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Feeling Ostomistic
Monday, August 20 2018

I think this title is appropriate as we were served chicken for dinner at the awards night, sorry just being cheeky.


Me holding my award and framed certificate

On Friday the 17th of August, Russ and I drove up to Brisbane to attend the 2017 Great Comeback awards held by Convatec. I know we are in 2018, but it was 2017 when I applied and so the award is for last year but it is in this year which is confusing, but anyway, I won!

I was 1 out of 5 finalists from Australia and New Zealand.

It was such an honour to have been made a finalist, and I was incredibly shocked and surprised to have found out on the night that it was me who had actually won! There were so many deserving and inspiring finalists who have incredibly powerful stories to tell.

On the night at the awards ceremony, which was held in the brand spanking NEW boutique hotel called Emporium Hotel South Bank (I am dedicating a whole separate blog post to this, so stay tuned), there were video interviews of each of the 5 finalists presented. Each video is around 2 minutes long and consisted of images or videos being added in to share in the impact of the story.

I was in tears watching the videos, then mine, which was last to be presented, had me in a complete blubbering mess. I was so embarrassed as it was MY story and I know this sooooo well so it surprised me that it impacted me the way it did. I assume it was a build up of emotions felt on the night, I was incredibly anxious but I was also very overwhelmed, so once the tears started I couldn't stop.

I am sharing my video to facebook, but it is available on youtube too and will embed it below at the end of this blog post.

Please keep in mind that the original video was 22 minutes long and was chopped down to 2 minutes for the ease of viewing, so a lot of important points I made were missed. I did also thank my friends and family and also those who read my blog and  my tribe who encourage me (you guys), so I don't want anyone to be upset if they didn't hear it mentioned (because it was).

If you have an ostomy, or know someone with an ostomy who has a story to share and have done something inspiring or had a comeback post ostomy life, please let them know about the awards. It could be something like pre ostomy life you were too sick to travel so once you had an ostomy you travelled, could be you returned to work, you did something you have always wanted to do, you started a movement to inspire others, you went back to uni and graduated, or you found yourself and the joy of life from having an ostomy.... or it could be whatever your heart desired that you feel you made a great comeback thanks to your ostomy.... 

The Great Comeback is entirely your own comeback after ostomy life and could be anything, or could be a number of things, it is different for each person.

To apply you need to submit your story via the site, you do need to include certain aspects of your story pertaining to:

  • How life changed or was affected by your/their medical condition and having an ostomy
  • How you/their Comeback was achieved and the positive effects that have resulted
  • The role that others (family members, nurses, surgeons) played in your/their Comeback
  • Any current activities or interests that you/they are now able to enjoy or participate in, and any specific dreams or goals that you/they have accomplished or wish to accomplish in the near future
  • The learnings or advice from your story that others might find beneficial

I wrote my story out first in a word document and then copied/pasted it in the appropriate sections. I used the aforementioned topics as headings for each part of my story.

**Please note: the drop down box doesn't have NSW available to be selected, they are aware but have said to choose any state but write somewhere that you are from NSW. They are in the process of fixing this error up along with updating their site too.

If you have a stoma nurse who is amazing and deserves to be recognised, please nominate them too! 

If you have any issues with your or your stoma nurse nomination, please reach out to convatec directly via email

My video:

I do encourage everyone to apply, the program is a great way to not only share your story but to meet other members of the ostomy community. The awards are all about empowering and inspiring ostomates that there is still a life to be lived and enjoyed after surgery. I had a lovely night, which I will share in more detail in a blog post to come. 

Thank you to Convatec and the judges for choosing me as the 2017 winner and I can't wait to see what is to come.

 

Posted by: Talya AT 12:52 am   |  Permalink   |  Email
Sunday, June 17 2018

 Attention:

Calling all young females (u/55) living on the Mid North Coast or Coffs Coast with a stoma, check out this exciting and new FREE event happening in August!

My stoma nurse has been excitedly organising this event and I was honoured to have been asked to design the flyer, but I was even more honoured to be asked to speak on the night as one of the speakers.

  The event is FREE and is open to all women with a stoma and under 55 from the area, if you're willing to travel you can come along, just make sure you RSVP.

  If you have any dietry requirements aside from the stoma, let the stoma nurses know and call 0266567804, that way everyone is catered to.

  The night is going to be a fun night with the chance to get to meet other young ostomates under 55's and the hopes of connecting each other to form friendships as ostomy life can be rather lonely for some.

  There will be a fun activity for all to join in and will also have reps from different ostomy companies there with samples or to speak more. Guest speakers will include Allied health professionals as well as myself.

  This event wouldn't be at all possible without the fundraising done by the Coffs Coast Crafty Crew (scrapbookers) in April 2016, as well as the hard work from the organising team of stoma nurses.

I am really looking forward to the night, and looking forward to meeting others from the area. Whether you're from Port, Grafton or in between this event is open to anyone who would like to come, has a stoma and is under 55 and a female.

Did I mention it is FREE and catered?

Can't wait and I will see you there!

Posted by: Talya AT 11:04 pm   |  Permalink   |  0 Comments  |  Email
Friday, June 15 2018

Today has been a massive day, I have been running around from appointment to appointment between the cancer centre getting my port flushed and bloods checked to getting my long overdue hearing check done. As part of my promise to spend time this year doing things for self care and prioritising me, this appointment was on the list.

I felt rather relieved to have finally had the appointment, moreso for what came next.....

I knew I had hearing loss in my left ear and knew it for a while, part of putting off the appointment to getting them was out of fear for the cost. Ever since I was 18 (2009) when I had the cysts on my brain I noticed hearing loss then, something to do with the pressure in my head, which has only gotten worse over time. Then when I had chemo I noticed with most things about my health, that it deteriorated more, so I feel for my neighbours as the TV is always so loud but I also feel for those I have hurt because they felt I ignored them or the conversation or that I was rude because I sat in silence.

☟☟☟☟☟☟

But today I went and had my test and found out that I was eligible for free government subsidised hearing aids that I needed to pay $45 a year for batteries and servicing.

So today I got fitted and chose the colour and style, then in a fortnight I will get them as they have to be ordered - they will be fitted and I will be shown how to do it myself and then I have them for a fortnight to test run and make sure they will do what I need them to do.

If after a fortnight I am happy with them I accept them and they are mine.

It was a little overwhelming being told that I am eligible for hearing aids, not from a vanity perspective or worried for my looks, but because I can finally hear again and not miss out on conversations or pretend I understand and can follow along.

It gets so exhausting if I go to a family function or a social outing, even just a dinner date with Russ, if there is too much noise I can't hear and it gets tiring trying to focus as well as focus on not being in pain, and I tend to just sit there not saying much and can be labelled as rude, but it is just so so hard.

So I almost cried when I learned that I could be hearing in a matter of a fortnight.

I am hopeful and excited, I have needed this for so long.

I am not upset or worried, I am just grateful for our health system and that there is subsidised hearing aids that don't do fancy things but do just what I need and that is okay, would have loved to have gotten purple but Russ found a colour that would blend in with my ear and hair so won't stand out too much.

So I am okay, I am just grateful for all the new possibilities coming my way.

I learned years ago to never take hearing for granted and have been grateful I still had hearing but was just hard to hear in one ear.

So if ever you felt I was ignoring you or being rude, I most likely just couldn't hear you.

Posted by: Talya AT 11:47 pm   |  Permalink   |  0 Comments  |  Email
Monday, May 14 2018

NB: SORRY THIS IS OPEN FOR AUSTRALIAN READERS ONLY

It is here!!! It is finally here, the time you've all been promised is here.....

Introducing the:

Epic self care and self love package for one to be won by one of you!!

Firstly, thank you to all of our kind and generous businesses without whom this would not be as epic or love fuelled as it possible is.

✰ To see all the prizes - click here

To enter the competion:
Please do so below via the widget answering a question which will be judged by a panel of secret judges chosen by myself.
♥ Then please like or follow the businesses on instagram and/or facebook by clicking on the links below, as a way of saying thanks. 
  Please note : THIS IS OPEN FOR AUSTRALIAN READERS ONLY, sorry
♥ YOU have a week to enter, comp closes next Wednesday 13th June! So hurry!

You'll love their feeds!

Feeling Ostomistic Epic Self Care for One giveaway

Please Visit and like/follow the following businesses:

1. ✰ Gorgeous By Carly: click here for facebook     click here for instagram

2. ✰ Sugorma: click here for facebook     click here for instagram

3. ✰ Chatterbox_City: click here for facebook     click here for instagram

4. ✰ The Love Letter Co: click here for facebook     click here for instagram

5. ✰ Sophie Guidolin: click here for facebook     click here for instagram

6. ✰ Pink Pom Pom Printables: click here for facebook     click here for instagram

7. ✰ Salty Fox Co: click here for facebook     click here for instagram

8. ✰ The Scenic Route: click here for facebook     click here for instagram

9. ✰ Kiss and Co: click here for facebook     click here for instagram

I am so excited to offer this, and remember it is only for a week only, so hurry!! Due to postage restrictions this prize is only available for Australian readers.

Posted by: Talya AT 10:02 pm   |  Permalink   |  4 Comments  |  Email
Sunday, May 13 2018

NB: SORRY THIS IS OPEN FOR AUSTRALIAN READERS ONLY

For as long as I have had this blog I had set myself two milestones I wanted to reach:
1) reach 1,000 on fb and 2) celebrate 5 years blogging!

I know these might seem like small or insignificant goals, but to be honest when I first learned I was 21 had early stage bowel cancer and would require a permanent ileostomy for the rest of my life - I didn't know if it would be a blog worth following, because it wasn't sexy and appealling, so I worried if anyone would read my blog or engage with me or if they would judge me. I was worried I wouldn't be accepted and that I wouldn't help anyone. It is such a sensitive and private topic that I felt so vulnerable putting myself out there so openly.

All I had ever set out to do this blog was just to help at least one person, and I know in the past 5 years I have done that! AAAAAnd I found MY TRIBE of people who love and adore me too.

This week I also celebrated 5 years since my total colectomy and the moment I became an Ostomate for LIFE! I celebrated each of those extra days and minutes I have had with pure joy and gratitude, as much as my stoma changed my life it saved my life too. 

My stoma has helped me to have these extra days and years, and my blog became an outlet for me to share my experiences and hope to empower and help others on their own stories.

I am so grateful to those who interact/engage with me on social media, many become friends or like family; they celebrate when I have a win, they share my sadness when I am in pain; they encourage and support me to live and celebrate life to the full - and I have.

So this giveaway is for YOU as my way of saying thanks.

I appreciate every comment, like, message and email and love all of the support, as I believe in the importance of saying thanks I am showing my gratitude with this HUGE giveaway for you. 

The ultimate self care package for One!

Prizes:

1 x Pair of Multi Marble Delight Earrings - Gorgeous By Carly

Get ready to sparkle with these pretties! Made from premium acrylic with a glitter top with stunning rose Gold findings to make them super classy too. No two pairs are the same due to the placement of the acrylic, these babes are definitely OOAK!
For more details or to see more of their stunning earring range click here!

1 x Ultimate Body Goodness Care Set from Sugorma
Body CARE SET - Love Your Body

 
Natural luxury body care to love your skin. Vegan, palm oil free and cruelty free. Enjoy Foaming Cleanser, all natural Body Oil, light and fluffy Body Cream and Salt Fusion Bath Soak and Body Exfoliant, to naturally care for your skin. A wonderful gift to spoil that special someone... you know you deserve this!
To find out about all of the items in this pack, click here!

 1 x Neck Wrap Heat or Cold in Boho Feathers - Chatterbox City
Wheat free, Odour free and doesn't sweat either.

Designed to sit nicely on your neck and shoulders & sectioned into 8 segments so that you receive an even heat. Use this pack hand free so you can still get on with your daily activities while getting your much needed relief or relax back and wrap it around your ostomy bag for a great tummy relief.

To find out more about this heatpack or to view the other innovative packs, click here!

 1 x 'Hey Beautiful' Love Letter - TLL collective
A letter of inspiration, gratitude, mindfulness and love, delivering a special & important reminder.

 

A reminder that YOU are Bright, Brilliant, Beautiful and Brave and most of all YOU are loved.
♥ A letter to remind you that self-love & self-care is essential and that you are deserving of your own authentic genuine love.
♥ Trust your intuition & have the courage to follow its guidance and if you believe in ANYTHING today… let it be YOURSELF.
To take a look in more detail at the amazing Australian made products included in this pack, or to look at their other packs perfect for yourself or to send as a pick me up gift to another, view their website here.

 1 x 'More than words' book by Sophie Guidolin
The perfect book to motivate and encourage you to dream big, More than Words is a collection of my motivating quotes and mantras.

 

Each page within the book details a beautifully hand-scripted quote to lift your spirits, change your mood and focus your goals.
The perfect size for bedside reading, to keep on your desk or take in your bag for daily inspiration, with a ribbon marker to save your favourite quote. I know I find great value in using positive affirmations.

If this book sounds like it is something you NEED in your life, you can purchase a copy for $29.95.

 1 x Set of 50 motivational & inspirational quotes - Pink Pom Pom Printables


This epic set of ultimate sparkly and girl power motivational and inspirational quotes, to print and start adding positive affirmations around your house. Perfect for anytime you need a boost of self-love.

  

Whether you're wanting to view all the 50 designs in this pack, or to purchase the pack yourself to print off as gifts when popped in frames, or to start filling your home or bedroom, office cubicle or even if you are studying and want to decorate your bedroom. The need for and use of these beautiful prints are endless.... and SO affordable too at 90% off RRP to buy all individually.

Head on over to Etsy to view the full details of this epic motivational package!

 1 x Pink and mint green car diffuser 'french vanilla' - Salty Fox Co
The perfect addition to your car, it will leave your car smelling fresh and pretty without being too overpowering. Even my husband feels pride for a nice smelling car.

 

What makes these beauties so versatile is that they aren't limited to being used just in the car! I plan on adding some to our walk in robe to help keep the room smelling fresh, could add to the bathroom or toilet, or sneakily throw in your teenage boy's room. But no matter what, you will be left feeling serene and smelling pretty too.

Head on over to their website to view all the different scents available and while you're there check out their other designs too!  ♥ All handmade and all so, very affordable!

 1 x 2 pack of Notebooks and a set of Greeting Cards - The Scenic Route
These beautiful pack of notebooks and greeting cards are designed by a local artist who draws her inspiration from our beautiful and colourful landscapes and flora and fauna of Australia. Taking the Scenic Route is all about choosing the path less travelled, slowing down and enjoying the journey, appreciating the scenery, and embracing a sustainable life full of colour and beauty.

 

Greeting Cards:
♥ 
Pack of A6 gift cards featuring eight unique hand drawn botanical artworks, printed on 300gsm recycled card.

♥ Perfect for all occasions, cards are blank Inside, each comes with recycled brown craft enveloped, and individually packed in a biodegradable clear cellophane pouch bound by a brown kraft paper bellyband.

♥ Made with love in Australia and printed on 100% recycled paper using vegetable based eco friendly inks.

 

Notebooks:
♥ 
Set of two A5 noteboooks featuring hand drawn botanical artwork covers printed on 300gsm recycled card. One lined and one unlined, front page features "This book Belongs to" title page with signature The Scenic Route illustrated border.

♥ Splash resistant cello glazed cover, 48 pages and finished with pink saddle sewn binding, perfect handbag size for all of your important notes and daydreams!

♥ Made with love in Australia and printed on 100% recycled paper using vegetable based inks.

 1 x Bath tea soak + candle + clay mask set - Kiss and Co
The perfect treat after a hard day and you need to unwind, this is the ultimate self care solution. Heat up a bath and add in some bath tea soak, apply a clay mask and light the candle. Talk about relaxing vibes!

Relax and unwind with our mini pamper pack. Including:
♥ Our bath tea bag - a floral bath soak with essential oils and salt from the Dead Sea it is designed to purify body and mind.
♥ Our Australian Pink Clay Mask - designed for most skin types, this is a nourishing and moisturising mask that will leave your skin glowing!
♥ Our Lemongrass soy candle - coming into the winter months it is such an uplifting scent, and will have your home smelling divine!

Talk about an epic prize pack to win!!! 

Are you excited? I know I am!!!

To enter click here!!

 

 

 

 

 

Posted by: Talya AT 03:25 am   |  Permalink   |  2 Comments  |  Email
Saturday, April 21 2018

Disclaimer: This blog post contains spoiler alerts for Irreplacable You and discusses themes around Anticipatory Grief and cancer.

I spend a lot of my time watching TV shows or movies online via netflix, that it is often the only way I can try to escape my surroundings or my reality faced. Sometimes you come across a doozy of a show that has you wondering how you could get back those wasted 90 minutes of your life; other times you stumble across the goods.... but then there are times where you start to really get into a show only to learn that it is actually about cancer, and when you're trying to escape your cancer riddled reality, often these shows just aren't what the Doctor ordered when he said to "Netflix and chill".

Sometimes it could be handy if a show came with a disclaimer/warning, similar to that of the warnings put in place in Australian media when warning that there may be footage/images/voice recordings of deceased Indigenous Australians which may cause distress for viewers:
 "WARNING: Aboriginal and Torres Strait Islander viewers are warned that the following program may contain images and voices of deceased persons.” (ABC) This source also explains the cultural signifigance and meaning behind this practice too. 

With this in mind, there should be something similar to be considered when it comes to TV shows or movies that involve cancer, especially to the point that it may cause distress to viewers with The Australian Cancer Research Foundation stating that "most Australian's will be exposed to cancer at some stage in their life either personally or through family or friends" as sourced from "Cancer in Australia in 2017". When you consider that the Australian Cancer Council state that "1 in 2 Australian Men or Women will be diagnosed with cancer in their life before they are 85", that is a HUGE portion of the population that are exposed to cancer either inadvertly or advertly.....

So surely a duress warning is warranted after all, due to the amount of population exposed?

When a show ends up revolving around cancer or the premise of dying, it can be rather emotional watching it and if you're in a bad headspace mentally like I have been lately, you just end up bawling for hours on end and can sometimes lead to feeling in a funk for days if not weeks and can even unravel how well you are indeed coping with life. 

Very rarely however, I can find myself actually learning something from one of these movies or shows; which is rather surprising and unexpected when it does happens. I recently and surprisingly learned that how I have been feeling in regards to my prognosis, actually had a name!

Anticipatory Grief: The grief you experience without realising there's a name for it!

I recently stumbled upon a Netflix Original Rom-Com (romantic comedy, how it is a comedy is beyond me) called Irreplacable You, which introduced to me the term Anticipatory grief. Once I heard it, that this phrase actually had a name for it, I felt somewhat calmer about all the shit I had going on in my mind and started to get some clarity within myself. Choosing to read on may contain in spoilers of the movie, so spoiler alert friends.

But knowing about anticipatory grief made me feel normal in what I have been spending so long trying to process.

Anticipatory Grief, as presented in the movie, was in the way that Abbi (the lead, the protagonist of the story) was so caught up on being worried about how her partner (and fiance) Sam would cope after her death, that she created an online dating profile with the aim of seeking out "the right woman" whom she could ensure would have Sam's best interest at heart and that he would be okay and taken care of. Abbi was so focussed on making sure that everything was ready and prepared for that she had hoped this would make her anticipated death easier on herself and those around her.

It had the reverse effect as it made Abbi so focussed on life of her loved one's after she was gone that she lost sight of the living and the being present in the now. She alienated herself and by pushing Sam into another woman's arms, she lost him too. They did eventually rekindle their relationship and the day their wedding was planned for, it became her funeral, as she had died in the days prior.

But it really made me look long and hard at my own life.

I didn't know that there was such a term as anticipatory grief, and I hadn't realised that I had been living and navigating through it.

But once I knew that there was a name for a lot of what I have been trying to do, for the sole reason that I had died, such as:
Writing letters to my loved ones;
♕ Leaving behind memory boxes;
♕ Doing special things such as the photoshoot with my sisters as they wanted a letter and nice photos of us sisters together;
♕ trying to tidy up our finances so Russ can manage on his own and with ease;
♕ Planning my own funeral so that others could focus on their grief;
♕ or even in leaving gifts behind for future milestones I will have missed.

There have been other moments I experienced Anticipatory Grief without realising it:

I remember breaking down crying at my mum's wedding February 2017, like I mean full on hysterical tears. Everyone (all my siblings) were dancing and my mum came and sat with me and hugged me. She asked what was wrong: that was when the tears started and they wouldn't stop. I felt so guilty that I was ruining her special night with my sadness and grief, I was just so sad at the thought of all future family events and milestones I was going to miss, such as the wedding's of my siblings, and it all just got too much for me. I apologised afterwards and the following day, mum said it was okay and she acknowledged that it must be hard.

But I didn't know then that it was anticipatory grief, it also wasn't the only occasion that has thrown me for six either:
I remember tears felt for my nephew's first birthday as I was surprised I was still there to see him celebrate (was 6 months since entering palliative care), but the thought of him growing up not knowing me or knowing how much he meant to me does still upset me. For his first birthday I named a star after him, for his second birthday I got a bunch of kids books and wrote a heap of heartfelt inspirational messages inside each one, that I hope will help motivate and inspire him in the years to come.

There are so many other times too, poor Russ has had to deal with me and the various stages of my grief for so long. He sees it all and knows this stage is hard for me.... it is hard knowing that life will go on and that I will miss out on things, but I am also worried my life would have meant nothing or I would be easily forgotten, so I am trying to do memorable stuff and make a difference as I don't want to be forgotten... which is another form of anticipatory grief.

I often break down at the thought that Russ and I won't get to live out our dream of sitting on our back verandahs in our matching rocking chairs just laughing and chatting together, or we often find ourselves talking about our 10 year plan and what we will be doing without thinking and then it hits us and one of us is crying. I get upset at the thought of missing out on having a career, missing the wedding of my best friend and siblings too. I was fortunate to live to see one friend get married last November, a day I didn't think I would live to see, and we both hugged and cried so much that day she just kept saying how happy it made her that I could be there and the feeling was mutual, gah - I am crying now just remembering that powerful and emotional moment.

I must admit the thought of Russ moving on and finding love after I've gone has been on my mind a lot, but not to the extent (yet?) that I would actively seek out my replacement and set him up before I had died (like Abbi, in Irreplacable You); I know I tend to do things a little pre-emptively, but that (seeking out my own replacement) for me is a little too much. I had considered writing a letter to whomever came after me, but trying to put that pen to paper was just far too difficult everytime I have tried. What do I say or how do I begin, "so you're banging my husband and could give him a life I couldn't because my body was too stupid go ahead and have fun kids"... nah, it is too much. I want him to be happy and hope he isn't alone but at the same time I often cry at the thought that he will have a life I won't be a part of and I won't be here and it hurts thinking of him having a family and having a relationship with someone who is normal and can do normal things like walk or shower without assistance, and who isn't such a burden. I do worry about him though, if someone takes advantage of him when he is vulnerable (such as take our house from him) or his next partner doesn't understand Autism, how his mind works and just how patient you need to be at times; he says he probably won't try dating again. 

Noticing anticipatory grief in those around me:

Now that I know that it (anticipatory grief) exists and it has a name, I have been noticing it more and more in my own everyday life and pracitices. I have also been noticing the anticipatory grief that others have in their interactions or behaviours towards me.

Ways or some examples have been:
- Not inviting me to something because it was easier to exclude me than to try and accommodate me;
the list could go on but I would be here for days if I listed the experiences faced, and you'd be horrified if you knew some of the truth too.

Time for change, let's talk about Anticipatory Grief to Normalise it:

For so long I have felt guilty or ashamed for feeling grief or grieving over the loss of something due to being terminal, such as: the loss of friendships or social relationships; loss of my independence and being so reliant on Russ; loss of my ability to do normal everyday tasks such as dressing myself, showering, even walking; I know I felt grief over the loss of my bowel; grieving the loss of my connectedness to my community and feeling like I don't offer a valuable contribution to society; loss of career prospects; loss of being able to have a family and fertility.

I wished I knew then that anticipatory grief was normal and that it was what I have been feeling for all this time, it might have made accepting and acknowledging these feelings easier, rather than bottling them up because I felt like something was wrong with me for feeling how I did and feeling like it was all trivial, not realising this is a totally normal process and grief to experience.

Perhaps if people read more about anticipatory grief, they might then know to speak with a mental health professional to help work through their issues, like I currently am.

But most importantly there is nothing to feel ashamed of for feeling this grief or for grieving the life you're going to lose, it is only natural, but finding the right counsellor to help you through your issues is key. If you don't feel they are a right fit, try and search for someone who is.

Know you aren't alone and what you're feeling is completley valid, important and worthy of being acknowledged.

Posted by: Talya AT 02:25 am   |  Permalink   |  1 Comment  |  Email
Wednesday, April 18 2018

Stoma Nurses are the heroes of the ostomy community, well I know I wouldn't have made the last 5 years without my wonderful nurse by my side. So it was why it was an absolute honour for me to have been asked by the WOCN society to contribute to a tribute video they were collating for WOCN week, to say thanks for our nurses.

It was even more of an honour as it was to mark 50 years of WOCN contribution, and I felt in someway that it was a way for me to leave a mark in the world to say thanks to my Nurse and all the nurses out there. I am big on saying thanks and ensuring that I say thanks for those I love or those who have made an impact on my life.

This week 15th-21st April, is the WOCN appreciation week. WOCN stands for Wound Ostomy Continence Nursing, in Australia this is a Stoma Nurse who is also a Stoma and Continence Nurse.

If you wanted to see the tribute video, here it is. If it doesn't load below the link is here.

Thank you to all of the nurses for all that they do to help ostomates navigate life with an ostomy more smoothly. Most importantly, thank you for having our backs.

OstomyConnection shared their thanks for the amazing WOCN too, have a read of their post here.

Congratulations to the WOCN society on celebrating 50 years of service! And thank you for everything!

Posted by: Talya AT 11:17 pm   |  Permalink   |  0 Comments  |  Email
Sunday, February 25 2018

Did you know: there is an International Day for just about everything!

Feb 20 was International Love your pet day, but that is just about everyday amiright?? It is made easier when your pet is beautiful, funny, compassionate, photogenic and clever.

Fabmewlous Dusty:

Dusty is my (well, I should say OUR) beautiful little ragdoll kitten who will be 2 later this year! He came to live with us when he was just a wee kitten and it was a matter of love at first sight, Russ and I fell in love with him straight away. He was just so, so tiny and adorable!

Dusty was so tiny he refused to go anywhere without me and often demanded I carry him or he slept on my chest, of a night he refused to sleep unless he was snuggled up to me in my bed and he has snuggled up to me every night since. He is like a soft, plush teddy bear but he helps to make you calm when he purrs.

We have been gushing over him ever since he came into our lives and will show off pictures and talk about him every chance we get and to anyone who'd listen... yes, we are THOSE type of fur-parents.

Russ and Dusty have their own special bond and routines, just as I have with Dusty. 

I can honestly say with my hand on my heart that Dusty saved me and has made my life significantly better! 

Life BD (before Dusty) was fairly lonely and boring, to be honest the days were long! 

But since, it has been filled with: love, friendship, so many cuddles to count, laughs and companionship. He senses when I am sad and forces me to cuddle him, he is incredibly emotive and he has the most beautiful big blue eyes that just melt your heart.

Russ leaves for work at 8am and I am no longer alone while he is gone for the day, Dusty looks in on me when I am sleeping and often is close by. He can even sense when I am in pain and unwell and is extra affectionate! Dusty also makes me laugh a lot and makes me feel so very loved.

Did I mention he is so clever too? He plays fetch with me everyday! I throw his toy and he fetches it and brings it back for me to throw all over again.

I never realised I could love my kitten as much as I could, I always never understood people when they said their cat is not JUST a cat and is a member of the family... that was until Dusty came into our lives!

Dusty is our child, he is our furbaby and he has helped to make our house a home. He greets everyone who enters with excitement and love and he tries to protect our home too, he also seems to know everything that is going on within our house often you'll find him at the door or window being a stickybeak. But his most important job is excitedly greeting Russ when he walks through the door after a long and hard day at work.

Dusty is famous:

So when OstomyConnection shared their "15 ostomates who love their pets more than anything" I was so honoured to see that not only did Dusty and I make the list, BUT we were number 1 too!

Pop on over and meet 14 other ostomates who share a precious bond with their pets, click the link here.

I have been sharing Dusty's shenanigans on Instagram and Facebook, he gives me so many reasons to smile and he has become a reason for many others too, often I am emailed and they make mention of how they love Dusty or when I run into someone down the street they say he makes them smile too.

He has THE BEST facial expressions!

You can find more of Dusty on my Instagram/facebook account under @feelingostomistic, he also has his own page @fabmewlous_Dusty on Insta and facebook. 

I am grateful to the joy and love Dusty has given me and I am sure it is one of the major factors in me still being here. He helped improve my spirits and my outlook on life.

The best advice people gave me when I got sick was that I should get a pet as they are the best therapy, I am just glad I listened! Maybe a pet will help you too!

 

Posted by: Talya AT 08:22 am   |  Permalink   |  1 Comment  |  Email
Monday, February 12 2018

Please Note: All views in this blog are my own (and I don't claim to speak for or on behalf of anyone other than myself)... also, spoiler alert if you haven't yet watched episode 14 of the Good Doctor. I am just sharing my dismay at how something that saved my life was shown so negatively inflicting a stigma that so many fight to erase.

I have finally got around to catching up on the most recent episode of The Good Doctor, which I was rather enjoying up until this week. 

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Let me start by sharing (an ironic) quote from the episode:
“Questions are good: Leads to awareness and understanding. Who knows, even acceptance.”
- Season 1, Episode 14 titled "She"

The irony is that they could have shown more compassion surrounding how they approached the idea and livelihood with an ostomy.

Instead, they made the idea of an ostomy as this tragedy and that it was THE worst thing to happen in life. I get that it is a show, it is made up, but it doesn't make those living with the conditions feel any better or at ease knowing "it is just a made up TV show that thinks this" when the reality is so many look down on life with an ostomy and struggle to see that a life can still be lived....

"I’d rather an ostomy in tow than a tag on my toe" - Talya Goding

I really was enjoying this show and often talked of the compassion felt in each episode, but this week I find myself as someone with an Ostomy to be disappointed in how it was perceived and quite angry too.

Maybe some more consultation from those with lived experiences could better make the show better.

Just an idea?

Myself and so many in the community work tirelessly to try and help people understand a life isn’t over with an Ostomy and comments on tonight’s show sets our work back 10 steps... arrogance isn’t helping anyone.

Ostomate and proud!
I took to twitter too to share my frustration and dissapointment, but I also wanted to write a proper post here that hopefully can show the inspiring side to ostomy life too.

 

Here are what other ostomates and advocates said about the episode too:

No You Cantcer @NoYouCantcer

Here are some ostomates who inspire me and others:
I know that for many an ostomy is an emergency and can come as a shock; I know that for many (like myself and others) they have many issues with their stomas and constant issues; I also know that It can take some a long time to adjust to ostomy life and it can be rather hard; some struggle a lot with adapting and this affects their mental, social, physical and financial health.

But then there are other ostomates who have regained their lives and done things they never would have imagined, because of their ostomy and because they had the surgery, that in their cases were life-changing as much as it were life-saving.

I will introduce you to Zoey Wright, Laura Zapulla aka @stoma_licious, Sam Abarca aka @Aussie_Ostomate, Gaylyn Henderson aka @Gutlessandglamorous, Blake Beckford and Dana Marie. You may have heard of these guys before or seen them on instagram, you may remember Laura and Sam from my 20 Aussie Ostomates on Instagram post.

While these are just 6 ostomates, there are so many others out there showing life with an ostomy can still be lived and loved, but also that this can be a second chance many didn't have.

I am sharing these 6 ostomates because they have inspired me and I know they will inspire you too!

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Introducing Zoey Wright @zoeywrightx - Pro Fitness Model:
Zoey is such an inspiration to many! She is a Pro Fitness Model with an ostomy, she has helped inspire so many others with IBD and an ostomy to do fitness and to also be a model too. She helped many, including myself, see that fitness is a reality with an ostomy. She shares videos, words of wisdom. She is stunning and beautiful and incredibly courageous to boot! Zoey has an ebook launching soon, so keep an eye out for more deets. Find her on: Instagram Facebook Twitter 

Introducing Laura Zapulla @stomalicious - Ostomy travel blogger:
In the 6 months post ostomy surgery Laura travelled 3 continents, 17 countries over a total of 10 months - all with her ostomy in tow! Laura helped me to realise that travelling with an ostomy is achievable and can happen. I know she has helped many others to see this too. Laura loves to get her bag out on her travels and below is pictured in front of the iconic Eiffel Tower! Laura had always had a dream of travelling and living abroad and her health put a halt to her plans, now she lives in London and travels every chance she gets. She shares her tips for travelling with an ostomy and living abroad on her blog and social media. Find her on: Instagram Facebook Blog

Introducing Sam Abarca @aussie_ostomate - RN with an ostomy and training to be a STN too:
Sam is an Registered Nurse (RN) from Australia who became an ostomate after living with IBD. She had surgery and 8 months later she was back in her scrubs and helping to save lives everyday! She documents life as a nurse with a stoma, including pesky bag leaks, but she continually inspires others whether it is running for a marathon or training to be a Stomal Therapy Nurse, or even helping new ostomates as they adapt to life post op. I know my STN is my rock and I couldn't have done this without her, and I know how valuable a good STN is to an ostomate, so Sam having her experience as an ostomate is really going to be such a resource and tool. Wishing you all the best as you finish your STN certification Sam x Find her on: Instagram

Introducing Gaylyn Henderson founder of @gutlessandglamorous - helping to inspire the beauty in all of us:

"Anything that has the power to save a life can be nothing but beautiful!"
- Gaylyn Henderson

For over a decade Gaylyn adapted her life around her pain, her health issues caused from her IBD and struggling to find normalcy. It affected her emotional health too. It was then when she had her total colectomy and became an ostomate that she regained her love of life again. She often has spoken out about the stigma attached to having an ostomy that was the reason she held off for so long. Determined to change this for others, she founded the Gutless and Glamorous foundation with aims at helping to inspire and improve the lives of people with chronic illness and pays special attention to those with an ostomy or need to undergo life altering surgeries. She said (in an interview with BlackDoctor) her ostomy "saved my life and I want to highlight that those living with one can be both #GutlessandGlamorous. It is my goal to help erase the stigma." I think she has done an incredible job and believe she deserves a huge applause for all her tireless work from advocacy, support, education and fundraising for a cure. The world is a better place because of people like Gaylyn. Find her on: Instagram Facebook Twitter Blog

Introducing Blake Beckford @Blake_Beckford - Model, Body Builder and advocate:
Blake battled bowel disease for over a decade which led to him needing surgery for an ostomy. Blake became determined to get back into shape and regain his bodybuilder career and it led to him becoming a model. He has inspired ostomates around the world to get into shape and enjoy fitness, he shares tips and videos on his blog and socials. He even founded a site called OstomyReviewer which is this amazing site where you can rate and review ostomy products and see what other ostomates have said about it before you have ordered or purchased it, how genious and is such a good platform too! Blake started the hashtag #myillnessisnotyourinsult after ostomy life was insulted by some leading "news" sites and he tirelessly advocates and fights for ostomates. Blake is often quoted saying "my bag gave me a second chance" and he tries to be a positive role model for ostomates, continuing to instil hope in others. Find him on: Instagram Facebook Twitter Blog

Introducing Dana Marie Arnold @lovedanamarie - country music singer/songwriter, recently married:
If you haven't followed Dana on insta yet, get onto it. She is so positive and beautiful, she is an amazingly talented country music singer/songwriter (I love her music) and her feed always has you feeling warm and fuzzy. Her love of life and gratitude for all things, including faith, is contaious and she is so down to earth. She got married recently to her husband Tanner and looked absolutley stunning on her wedding day. On her blog she shares some great advice on living with a stoma, how faith can help you heal and more importantly, she shares tips on how to love yourself bag and all. I actually first discovered Dana back in 2015 when I came across her online course she had for "rock the bag" where she helped you find confidence and to love yourself post ostomy surgery, I started following her online and her feed constantly leaves me feeling positive. I'm not religious but I find comfort in her words at times. Do yourself a favour and follow her, you won't be disappointed. Congrats Dana on your wedding Day too! Find her on: Instagram Facebook Blog

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I have talked before about how my ostomy gave me my life back and how it saved my life, my ostomy is the reason I get to cherish the gift of each day I wake up, my ostomy isn't perfect and is complicated but it gives me life and that is precious. In the future I hope that there is more acceptance for life-altering and life-saving surgeries like an ostomy and that it is more accepted.

This is why I started my blog 5 years ago, so that I can share life with an ostomy and hope to inspire others to live their best lives. I am so grateful now that there are so many wonderful ostomy advocates and bloggers on social media.

My wish is that in 10 years there won't be a stigma for ostomy life, that ostomy life will be accepted and not made to feel embarrassed for pooping different... I have seen how much the landscape has changed in 5 years and it gives me hope for future ostomates and the next generation of ostomates that they will feel love and acceptance and never have to feel ashamed for something out of their control anyway.

As I say all the time, I'd rather an ostomy in tow than a tag on my toe, ostomy life has been a rollercoaster ride for me, but it has also gifted me the joy of living too - so I will always be grateful for that.

 

Posted by: Talya AT 11:43 pm   |  Permalink   |  0 Comments  |  Email
Friday, February 09 2018

I have had the pleasure of connecting with some incredible ostomates over the years, even had the chance to interview and chat with them for my magazine, which is always a great privilege. Some have even become great friends too.


My Interview with Krystal on Ostomyconnection.com

Last year I was honoured when Krystal Miller, who is an Aussie ostomate/advocate/IBD warrior and blogger more famously and belovedly known as Bag Lady Mama online, allowed me to interview her for my magazine. She was the cover ostomate for issue 2 and allowed me to get down and deep with my readers, and had a no filter no question off limits type interview.

Ostomyconnection.com reached out after the issue went live and asked us if we wouldn't mind if the interview was republished and edited to suit the readership and the site.

So last month I opened up my inbox to see the latest interview went live on their site. I was so excited to see how many were sharing the article around social media and how many loved the interview.

As a writer, or maybe it is just me, I tend to doubt myself A LOT - I mean constantly - so I always worry that people won't like what I have written or that it wouldn't be read/enjoyed.

I saw within a couple of days there'd been something like 888 shares, this gave me this huge smile and sense of "maybe I am doing something right after all" but to know so many liked it really made me so proud. I think I used the term 'proud as punch' on twitter, but I honestly am.

Of course I know my interview wouldn't have been what it was if it weren't for my wonderful interviewee, Krystal.

If you want to read the interview on OstomyConnection the link is here.

If you want to read the original interview or to read issue 2 of the ostomistic life magazine the link is here.

You can also find Krystal aka Bag Lady Mama online via:
Instagram @bagladymama
Facebook @bagladymama
Twitter @bagladymama
Or her site/blog

5 years ago I took a chance on myself and started writing about life with an ostomy, and I am just so grateful to the opportunities and people I have met along the way.

P.S I have another interview/article on another Aussie ostomate, Laura Zapulla who blogs at stomalicious, talking about how she has inspired and shown ostomates that you can have bag will travel and that having an ostomy doesn't stop you from living the life you are able to. She recently moved abroad which is a lifelong dream. So I am excited to share that interview soon. Laura has shared articles for me in my magazine about travel with an ostomy too. 

Posted by: Talya AT 11:03 am   |  Permalink   |  0 Comments  |  Email
Sunday, February 04 2018

If you could see me right now, you'd see that I have THE biggest grin on my face. Imagine a Cheshire cat style grin....

Yes, it's that huge!

Why?

I recently got home after a short stint in hospital where on Australia Day I almost died, it has been a rather upsetting and hard fortnight but I am home now and recovering (and catching up on everything).

I am so grateful and acknowledge my own privilege in that I could come home this time, but also that I continue to live for another day.

I was so scared on that Friday as I wasn't ready to die, I had so much I still was yet to achieve and do and finalise. I was scared that I felt things weren't ready and my anxiety since has been sky high, understandably so, worried about when or how close the end actually is - which is looming everyday closer, it is terrifying.

I know I have so much I wanted to achieve and goals I had set both personally and for my blog, which brings us to today's post.

Back when I started my blog 5 years ago I said to myself:
"I want to work hard to help others with their stoma journey, I want to have a blog still valuable in 5 years time and I want to get half a million views and just hope that I have helped at least one person in my time".

So I remember a couple of weeks ago - before I suddenly got sick and went to hospital - I had looked at my site stats as I was updating my media kit for January. It was when I noticed that my blog views were sitting 15k shy of half a mill.

I said to Russ: 
"It would be awesome if for my 5 year blogaversary I hit 500k views and hit 2 big goals in one go!"

I am not writing this as an intended brag post or anything, and I know for some blogs 500k views is their monthly or yearly visit, but I am sharing this as I am feeling incredibly proud as punch right now.

5 years ago I was told I had early stage bowel cancer and was about to undergo surgery to remove my entire large bowel and live the rest of my life with a permanent ileostomy for the rest of my life.

I was scared 

I was alone

But I took a leap of faith and courageously started my blog.

I was worried that people would not be kind or respectful, or that people would be judgemental and rude. I also worried that maybe what I am trying to share wouldn't be read by anyone and wouldn't be providing value or meaning.

I was full of self doubt.

It is quite vulnerable when you put yourself out there and you don't know how this all would work out and how well your blog would be received. Especially given that it is a difficult and personal experience that I was putting myself out there during what is a private time of mine and my husband's life, but I knew that if I shared this openly and what I learned along the way that it could actually be helping someone somewhere. I know it helped me immensely to share this, gave me a sense of purpose.

Back then there weren't many ostomy bloggers, social media (instagram more so) wasn't as huge nor were those publicly sharing life with an ostomy, and ostomy life and living with a bag was such a taboo subject. It felt rather lonely and isolating, felt kind of like it was a dirty little secret and I wanted to try and change that and help the next generation of young ostomates to embrace their lives and stoma.

I had hoped that I could be part of the movement of helping to normalise life with an ostomy and raise awareness of that life as a young person with a stoma is still able and that life won't end.

So with hesitation  I hit publish on that first post and was surprised by what followed.

I was thanked for what I wrote, I found people who respected my writing and it has led to some amazing friendships and I found my tribe and community.

I felt valued, I found self worth and I found that there was a sense of magic in helping others to feel less alone as they navigated their ostomy life or dealing with new diagnosis and what comes next or even in finding themselves again.

I know it is scary and daunting sometimes, but I know how much better it is when you find someone who you can identify and relate to or read something that creates an 'ah ha' moment... I just hope that I have helped others.

My milestone, that I thought back 5 years ago was unrealistic and unattainable but I still held hope and believed in myself and backed myself. I learned a lot in that time not just about life but also about myself.

Thanking you

My blog wouldn't be what it is without you guys, my tribe and cheer squad

Of course me celebrating this moment would be worthless if it weren't for every single one of you who read my blog, support me and my writing and have helped me create a community.

Thank you so much for your support, respect and kindness over this time, but also for your friendship too. Thank you for embracing me and for letting me be myself and helping me at times on my quest to find/discover/remember myself and for reminding me when I had forgotten. 

I want to thank you and show you how much I appreciate you.

I have been looking at ways to celebrate my 5 year blogaversary, reaching half a million views to my blog and being close to 1000 facebook likes. So I am thinking of fun ways to say thank you, so please stay tuned.

What an Ostomistically amazing time it is to be alive!

I am grateful so much for you all and if I have helped you in any way please comment below.

Posted by: Talya AT 12:58 pm   |  Permalink   |  1 Comment  |  Email
Friday, January 19 2018

I had wanted to write about this topic so many times last year, but each time I feared if I did it could somehow come across that I am some angry hermit who doesn't like visitors. 

I don't claim to talk on behalf of all the people who are chronically or terminally sick, I simply am sharing mine (and my husband's) views of how we feel when you have surprise visits. Sometimes surprise or short noticed visits are difficult and stressful, you mightn't realise but there are reasons that make surprise visits difficult.

It could be very easy for you and your loved one who is sick to know how you can better support them and what things or actions don't help them. Finding how they feel about their needs or issues and how you can better help could be a starting point so you both can understand.

It is hard when you're chronically (and also in my case) terminally sick and trying to navigate the waters of keeping up appearances, being social and people visiting often surprised and unnanounced. I know people care and they decide as a last minute thing that they wanted to visit me for the day but don't bother telling me as "it is fun to surprise you" thinking it will make me feel great about myself having visitors, but they don't realise surprise visits cause me a lot of stress and anxiety which I explain below.

Don't get me wrong, I like when people visit but only if 2 conditions are met:
#1. I have notice and #2. Providing I am feeling up for it.

There were a few times over the past couple of years when people had surprised visited me and despite continually asking for no surprise visits, they still happened.

Family and friends were outside waiting and were upset and bothered when I didn't answer the door, because I was asleep and had my phone turned off so I could sleep.

I NEED notice when it comes to having visitors for a few reasons.

#1. I sleep a lot:
I'm not lazy, I am sometimes tired of having to explain and justify my pain or tiredness, but there are days if not weeks or months where I am asleep and resting. I turn my phone off on my bad days or when I have had very little sleep and need un disturbed sleep. So telling me the day before gives me notice for then being able to make sure I am up and ready if I am ready.

#2. My stoma leaks a lot:
My stoma leaks a lot, 95% of the time when I wake I am dealing with leaks. It is really stressful when woken and knowing people are outside knocking and waiting/expecting me. It is something that makes me anxious when I do realise people are waiting for me, as if I am home alone I have to try and deal with a leaking stoma whilist trying to get to the front door quickly (often I miss the postie or courier and have to drive to Coffs to get my parcel). It is also why I get upset when Palliative care would randomly rock up without telling me and then were cranky when I wasn't home to answer the door when I was, I was just in bed asleep... so when my stoma leaks it can take me time to get ready. It means needing to get dressed and cleaned up and clean my linens if needed. It is something that I can need time to be ready, and knowing someone is outside waiting for ages makes me feel more flustered.

#3. I often sleep starkers:
Because my stoma leaks a lot, it is just easier to sleep with either no clothes on or just undies and no PJ pants. Sometimes I wear a top sometimes just undies and no top... so it is less laundry to wash because guaranteed my stoma leaks often in the middle of the night or when I wake and it is hard to have to strip down while trying to do a bag change - all while magically avoiding making a mess! If it is just going to be me home it is best if I know if anyone is coming so that I can have notice and get a chance to get ready. When you surprise rock up it can be hard as my clean clothes could be in the laundry (in the dryer) and I have to try and get through the house with just a dressing gown on and hope if you're outside waiting that you don't catch my streak through the house to get my clothes.... so I need notice if you plan on coming for obvious reasons.

#4. I am often in pain and bedridden:
When Russ leaves for work of a morning he shuts and locks the door as he walks out. So sometimes if I know someone is coming to visit I would ask him to leave the door unlocked and shut. If this is a day when I am barely able to get out of bed it can be stressful knowing someone will arrive and I can't exactly get up to open the door. I was criticised last year (well, 2016 too) when I wasn't much of a host and "don't make people feel comfortable or welcome" because I can't be a host. I think it is hard for people to understand that it is painful and difficult to stand and walk let alone be a hostess. If you come and visit, please have zero expectations of what I am meant to do... don't expect me to go above and beyond to impress you. I am not being rude, you might think I am, but if you wanted a cuppa help yourself. 

On days when I am bedridden I would love visits, providing you are understanding that I am in bed and you can sit in my room chatting with me. But don't expect me to get up and entertain you, defeats the point of being in bed resting. Don't ask "when are you getting up" or "why aren't you getting up" because it makes me want to kick you up the butt if I could because I don't need to justify myself to anyone.

#5. I can't just simply duck out to the shops:
If you just surprise visit me and I don't know you're coming, you very well could be having a cuppa without milk. Some days Russ will make his coffee for the day in his thermos and takes it to work, it is a guzzler for milk. So its very likely that he uses the last of his milk as he leaves for work knowing full well that he has to buy milk when he finishes work in the evening.

If you arrive and we don't know in advance, even if you tell me in the morning, if Russ has already left for work it is too late. I don't have a car and can't drive much anymore, so if you surprised me it would mean I wouldn't have milk or cake or anything and would be a terrible host (again) and I would be feeling so anxious all day if you arrived worried that am I going to hear about this from others about how I am a horrible host... I don't mind if you do turn up unnanouced, just don't be upset if I don't have milk or coffee and can't get to the shops.

#6. I need a chance to cancel:
I always will try and attend something regardless, but there are times when I am in too much pain or phsyically unable to attend. Giving me warning and time in advance of a visit gives me the chance to cancel within reason. If I had notice I could tell you ahead of time to not waste your petrol in coming up if I wasn't up for the visit, I would hate you to be disappointed with your visit or feel like I wasted your time. If you surprise visit me I can't give you the chance to avoid being disappointed with me.

#7. Our house mightn't be visitor friendly:
The entire household chores and running falls mostly on Russ' shoulders. He also works full time. He has a roster system of how he does the house, one day he does the rubbish and kitty litter (and every second day) and some days he would do the bathrooms or vacuum. If you surprise visit us, we will feel embarassed because the kitty litter might be due to be done that day or the rubbish. It can be hard when you surprise visit that I am anxious if you are judging us the entire visit and will go off and tell others about how we live, which has happened, and makes us less inclined to invite you back. 

I could go on about scenarios, there is so many more.

But I do love a visit, just prefer at least a couple of days notice at the very least to make sure the house is ready or that if you're staying the guest rooms are ready. You can visit, please just understand that turning up and surprising me isn't what works best for us. 

I know it is hard to understand, but please do reconsider and try to give us as much notice for when you want to visit. I want to have a nice visit with you but I don't want either of us to feel uncomfortable.

If you do decide to that day or morning to visit, please give me as much notice as you can. If you arrived in Coffs at 9am but aren't visiting until 4pm Don't wait until 3pm to call me! Tell me first thing so I can have time to assess if I am up for a visit or under what terms. If you don't hear back from me or Russ before 4 hours before you're planning on visiting then it might not be the best day. If you don't hear from me, try Russ. 

But if Russ says "today isn't the best day she isn't well" please respect his call.

Don't continue to turn up and then be upset if you're outside waiting for me for a while and I am asleep and don't know you're there until an hour after you've sat out there waiting. If you haven't heard a conifrmation at least 4 hours before arriving on if I am aware you're coming or if it is the right time, than maybe it isn't the most apporpriate time for a visit.

Again, none of this is said to upset anyone, I want visitors I really do - I just don't do well with surprise visits. My health IS declining and I am spending more time in bed, so surprise visits really aren't ideal for us anymore. #sorrynotsorry

As I said, ask your loved one how you can support them and what they need from you, in my case try to avoid surprise or unnanounced visits.

Posted by: Talya AT 10:19 am   |  Permalink   |  0 Comments  |  Email
Friday, January 12 2018

I know I have chirped on and on (and on) about how we are struggling financially and that I am concerned about when I die and if Russ can manage it on his own. I know you're probably sick of hearing me go on about it, but it honestly is so stressful.

It is hard being on one income, I know it is overwhelming for Russ too.

So last week we got a letter from our bank informing me that as of today (the 12th) our mortgage will be going up $500 a month.

This really scares me.

Not only do I not know where I am going to pluck that extra $500 from this month considering we are already halfway through the month, but that I really am so stressed and upset.

Yes, I acknowledge my priviledge in that we have our own mortgage, but even when we were renting things were hard and the rent assistance really made the world of difference when it came to our budget. But it doesn't mean that things instantly became easier when we got out mortgage. I didn't realise how much harder it was to have your own place.

I see how worried Russ is over this and I know he is on the fritz of losing it as it was before this letter, now he is just even more stressed. I feel so guilty, I know it isn't my fault and that I couldn't help getting sick but it is my age old issue with that I should have gotten life insurance earlier or made more of an effort to do extra super contributions when I worked as it would mean I have more than $3000 in super.... which I am still fighting to get out mind you.

Argh.

That is a fight for another day.

My Solution:

Yesterday I got a copy of Barefoot investor in the mail (thanks to a beautiful friend buying and sending me this copy) and started reading it, I have heard everyone rave about it and how effective it truly is, so it gives me hope for the first time that maybe I can get things under control this year.


So many have raved about the books!

It is one of my goals to get things neater for Russ, I don't know how much time I have and I think it will just be a massive peace of mind to know it is under control.

We have our mortgage, debts, car loan plus our other bills. So I try each year to review things to see if there is savings to be found, so I am hopeful that this book will help me even more.

Plus, it is one of my goals to read more too, so this is already tackling my goals for the year.... maybe this year is getting off to a stressful start but it might be turning around? Always hopeful that things will get better, surely they have to?

A friend has put me in touch with a broker and hoping we can find a new bank with a better rate and can consolidate our debt which will mean freeing up a lot of weekly expenditure and might mean we can afford to start saving.

So tell me, have you read the book? Did it help you? What was the biggest take away you had from it?

I will let you know when I have finished reading it and what progress I make.... until then, wish me luck!

We also got Solar Panels on recently, they had a 5 year interest free offer, so we are really hoping that on our next bill we can see a difference, otherwise I am going to be rather upset. Russ assures me we will be better off and that it will improve the value of our home too. Do you have solar panels and do you see a difference? Next bill is March, so will let you know if there were savings to be had.

As always, thank you for listening and wish me luck as I tackle this mammoth task!

What goals are you hoping to tackle this year?

 

Posted by: Talya AT 07:35 am   |  Permalink   |  0 Comments  |  Email
Friday, January 12 2018

I was scrolling through my Facebook 'on this day' memories when a post from this day, 5 years ago, came up.

The post was:

You see, I had a pretty MASSIVE and life changing decision that needed to be made.

I was told not long before Xmas 2012, that I had early signs of bowel cancer and that I needed to have a surgery called a total colectomy with a permanent (end) ileostomy created.

I was so scared, I was so alone and I didn't know of ANY other people with an ileostomy let alone a young person with one.

I was 21, why should I have known anyone, afterall I was ignorant and thought just older people lived with stoma bags, it was hard to fathom a young person living with one.

I ignorantly made this association as I presumed that people had a stoma at the end of their life and that their lives are essentially over.

So when I was told that I would be needing one at 21, for the rest of my life, I was really freaking out.

I tried to search for blogs about young people with an ostomy and couldn't find anyone. Social media wasn't what it is today, there was Instagram but it hadn't taken off, but there was still so much stigma around living with an ostomy and the social stigma too for that matter, that not many were sharing their lives publicly.

The media wasn't helping much when it came to sharing stories about people with a stoma either. They published such negative, fear mongering articles that had people, like me, perceiving it as death sentance or that it was THE worst thing imaginable.

But my surgeon said this to me :
"while this will change your life, it will also save it."

I met with my stoma nurse, counsellors and surgeon a couple of times to help me process the surgery. I hadn't told any of my friends or family, I didn't know how to bring it up, I knew they would have questions that I wasn't ready to answer, but I was worried about being judged.... so I decided to wait until I had to tell them, which was the week before surgery. I had so much to process as it was I just didn't need anyone else weighing in, they were pissed understandably, but they were also upset that I was trying to process such a huge thing on my own.

I had told Russ though and he had been coming to my appointments with me, as it was impacting him too. At the time I gave him the option to leave me, told him that I wouldn't hold it against him if he did as it wasn't what he signed up for, he told me to stop being ridiculous and it would take a lot more than that to stop loving me.

I couldn't have gotten through all of this and life to come, without Russ though.

He came to my appointments and asked my surgeons or stoma nurse questions, he even asked if when they teach me how to look after my stoma that they show him too so that he knew how to help. I think it was at that point I fell even more in love with him, which I didn't think was possible.

Russ said to me that it was my decision to have the surgery or not, but if it meant that this could be helping me to live as long as I could that he would appreciate me having the surgery.

So 5 years on, this is a letter I wished I could tell my scared 21-year-old self, I don't even recognise that part of me anymore I feel like this was a massive turning point in my life and I grew up A LOT in the years to follow.


21-year-old me

Letter To My 21-Year-Old Self:

Talya,

I know you have a lot that you’re dealing with right now and I know that you’re doing the best that you can under the circumstances. You are facing a life-defining decision right now, I can tell you this because I have watched you live through this.

Yes it changed your life but it saved it too.

Do you know how much pain you’re in right now and every time you go to the toilet? You probably won’t believe me when I say this, but you won’t be in agony multiple times a day. You won't even be needing to spend most of your day on the toilet either.

Do you know how you don’t leave the house, go out for dinner or stay over at someone’s house unless you know that a toilet is accessible and close by? Well, you won’t have to worry as much. You won’t be needing to quickly dash to the toilet every time you eat.

Do you know how you lost your enjoyment of food because of the above comments? You will find you can eat all your favourite and missed foods, given there are things you can’t eat anymore, but you will find you will learn to love and appreciate food again.

I won’t lie, there will be some pretty difficult times ahead, not only will surgery and the recovery be long and hard but it will be painful.

You will adapt to stoma life, but it will take time, so be patient with the process.

There will be times where shit literally will happen, it is to be expected, but trust me - you will get used to it. You will sometimes wake covered in shit, so just remember to empty your bag throughout the night and also invest in waterproof mattress protectors.

Sometimes leaks happen, it isn’t your fault, but always carry a spare set of supplies everywhere you go just in case. There will be a time where you’ll be caught out, it will be embarrassing and it will serve as a learning curve.

I know you’re apprehensive right now about surgery, but your stoma will serve to give you extra time… everyday is a gift and not a given right, learn to appreciate each day you wake up and all of the moments you have.

You don’t need to worry about Russ or your marriage, he will be there for you every step of the way. He will surprise you at how calm and collected he is even when you’re flustered and freaking out and covered in shit, even if it is in the middle of the night. He won’t mind helping with your bag changes or leaks, you just have to ask him.

He loves you for you and your stoma will soon be a part of you.

You will lose friends, because they don’t understand - it will hurt but don’t dwell too much on those who aren’t there for you and appreciate and be grateful to those who are. You will make some great friendships over the coming years too, you'll find people who embrace you for the wonderful person you are and won't be worried that you have a stoma.

Just remember what dad used to say to you and find comfort in his words offered.

The next 5 years will be incredibly tough and this is just the start of the rollercoaster ride known as life, this will be the first of many primary cancer diagnosis’ and the start of many surgeries.

Know your limits but also recognise when you need to ask for help too. Put your stoicism aside and ask people to help you, most are wanting to help they just are waiting for you to ask.

There’ll be times where you easily wished you could pick up the phone and call dad, but there’ll be times where you will draw from his presence and he will be there to guide you. I am sure he will be proud of you. 

Learn to pick your battles, know that some just aren’t worth the stress. You will come to learn to try and let everything go, everyone will always be having their own opinion or force their mindset onto you. Just stay true to yourself. Know your worth. Know that you aren’t what they think of you. 

It will be hard on your mental health throughout times over these next 5 years, there will be times where you spiral and it is important to always recognise when you need help. Find what drives your creativity, focus on writing or creating, find ways to give yourself purpose in your day.

You are about to start a blog, you are worried about putting all this out there publicly and worried about how other’s perceive you. But by doing this you are going to be helping so many, you will help save lives, you will help nurses in how they help support young people with a stoma, you’ll be nominated for awards, you will even start your own magazine for young people with a stoma and will even help others to feel less alone.

You’ll start your blog because you’re finding as a 21-year-old female that there isn’t much info out there at the moment when it comes to young people with a stoma and a blog, you don’t know what life will be like going forward, but you will feel that if you share it as you go that maybe you’ll help others who are feeling alone or worried too. You will meet other young ostomates too.

You’ll even be invited to speak about your time as a young ostomate.

But you will also get to do some fun stuff too, like catch the train to Adelaide, go to P!nk’s 2013 concert, Meet the Dixie Chicks and see them in concert in 2017, finally get to experience and see Darling Harbour, Go to Melbourne and accidentally stumble across the Offspring hospital, go swimming and do water aerobics, and do some bucket listing too. You'll finally get a tattoo too!

You and Russ will realise your house dreams in 2015 and will build a house, you’ll also have a very adorable and fun kitten who will make your days fun and full of love.

Then in 2016 you’ll need surgery to remove one of your tumours which will mean losing your stoma, your stoma will now be retracted and sit under your skin. It will leak a lot, it will be hard at times to lose all hope knowing the good stoma you had prior, but you will get through it. You will get used to daily leaks and waking up with a leak, it will affect your mood and what you do but you’ll be relatively okay.

In 2016 you will also enter palliative care, they will offer you a wheelchair - don’t decline out of pride or feeling like you aren’t worthy of it. You will learn to love your wheelchair and embrace it, just like you have your stoma.

So while you have a huge decision to make right now, I can tell you this now that you will be better off having the surgery. You will be okay, your marriage will be fine, you will love life and not fear it.

Don’t fear asking your stoma nurse for help, even if you feel it is a silly question, she will be one of your greatest supports. She has probably heard it all, you really couldn't do this without her....

But you have got this, your life will be changed but you will cope and adapt.... just breathe!

Write that bucket list now, start to see and do as much as you can and don’t keep saying there’ll be plenty of time, go travel when you’re able to and take lots of photos and always tell those you hold dear you love them and appreciate them.

Love,
your older and somewhat wiser self

P.S I just wanted to say thank you to each and every person who reads my posts, comments on social media or on here or has emailed me over these 5 years supporting my blog. Cannot believe it is 5 years later already!

 

 

Posted by: Talya AT 06:47 am   |  Permalink   |  0 Comments  |  Email
Friday, January 12 2018

NB: This post contains talk about poop

You always remember your first time doing a milestone. Well today I am celebrating the first time I showered without my bag on and boy I felt like a rockstar afterwards as though doing something mundane but great.... If you know what I mean.

There have been times where I have had a really bad bag leak, I'm not talking about a little seepage from under the wafer, I am talking a leak of cataclysmic proportions like a volcanic erruption or a poosplosion (the latter is real, trust me). My clothes, my linen and my mattress protector needed to be washed and soaked with napisan.

Then there was me, not only were the clothes I was wearing drenched, but so was I.

You know when you go to the beach once but for the next month you find sand everywhere and it gets into every nook and cranny? Well, that is how it is for me when I have a bag leak of epic proportions, except switch out sand for poo and you've got yourself a winner.

So in times of a cataclysmic bag leak it is best to just get in the shower and be hosed off and clean up the mess later.

I have always been hesitant though at jumping into the shower without a bag on, normally I would clean my self up the best that I could while sitting on the toilet and once a new bag is on I would then jump into the shower. Which often meant changing my bag afterwards.

I know what you're thinking, but WHHHHHHYYYYYY?

Well, it was simple....

I was scared.

I have never, in 5 years, showered without a bag on. 

I know many do and many have many times, but I was always hesitant.

One of my fears, with my first stoma (May 2013-feb 2016), was because essentially your bowel is stitched to the outside of your abdomen I was worried about the run off from my shower gel or shampoo/conditioner would affect my stoma or cause irritations that might leave me presenting to the emergency department explaining my issue and people think I am silly for not knowing better. It really used to play on my mind.

So I never did try with my old stoma.

Then this new stoma (feb 2016 to now) is a total pain in the ass, it is retracted and sits under my skin, essentially I poop out of a belly button looking hole. So because of this I was always worried that the run off or chemicals would get inside into my small bowel and cause issues, because, well, soap and shampoo/conditioner shouldn't naturally be in your small bowel... so I worried it was just a recipe for disaster.

But with both stomas I was also worried about the mess side of things, like what if it were active during my shower, what if it were active while I was drying myself and would have to shower again and the circle would go on, and on, and on. I also can't bend over or get down to clean, so I was worried about leaving another chore for Russ to do, so I feel enough a burden when my bag leaks this badly and he has to help clean me up.

So back to my story.

I was in bed asleep all day and woke around 6pm to find my bag leaked, I called for Russ to help me as it was too much for me to manage to clean on my own.

Each time it is this bad he always says "just jump in the shower and hose it off", but every time I say "uhh, no it's okay I will figure it out".

Except yesterday I really had no energy and said "what the heck".

I took my bag off and disposed of it, that way I could clean my stomach better and easier.

I had my first shower without my bag on, it was nice to have water running directly on my belly as opposed to wet towelling and washers. It was nice. I have a handheld shower head which has different notches you can turn it to for different settings, so I put on the more gentle of the settings and didn't hurt.

I was worried about the repurcussions of an active stoma.... but to my surprise there wasn't any disasters. My stoma had probably expelled everything it had stored in there (daily I have bowel blockages due to tumour issues) so sometimes it works all of a sudden and leads to poosplosions like this.


Me post shower, feeling like a freaking rockstar!

Now I know next time when I should just jump in the shower and hose off that it will be okay, that I won't die because my soap chemicals burned an ulcer through my small bowel or that showering with my bag off won't damage my skin if anything it helped it.

Thankfully it isn't everyday that I wake up with a leak like this, some days it is more managable, but it is uncommon to have a day where I don't wake with a leak. There have been a couple of times when a leak like this happened during the day when I was out (once at a wedding and once at a restaurant), so in those moments I can't just hose myself off. 

Have you tried showering without your bag? Were there worries you had too?

I know my worries might have seemed over the top, but I live with bad anxiety and that anxiety rules a large part of my life and very quickly my mind can esculate a situation.

I am used to bag leaks now, but it took a while to not be flustered. At first I would cry every time my stoma leaked and I would be so flustured and overwhelmed, so much that my husband would step in and help me. He always was the calm one. I used to play songs or music when I did a bag change to help distract me. When I got my new stoma and it leaked almost hourly I basically had an ipad set up and would watch something funny to distract me, the steps involved in doing a bag change took almost an hour each time and it just helped the time to pass by being distracted.

Now when it leaks, I am just so focussed on getting a bag back on as quick as I can because sometimes it can take a long time to stop being active long enough to whack the bag on.

If you have a frequent leaking stoma, welcome to the club.

But be sure to see your stoma nurse about why you have a leak and what you can do to prevent it, I know not all leaks can be prevented but sometimes there could be a new or better product for you to try.

With my first stoma I was have regular leaks every few days, I realised that my output was getting under my base plate, so my STN gave me rings/seals to try and it really helped improve the longevity of my bags and I was able to go 7-10 days between changes and my skin was still good... I do miss my old stoma, and it is important to note what worked for me in that situation might not work the same for you.

Of course there isn't anything to be done about this current stoma, and it could be the same for you, but sometimes your nurse or surgeon can help.

Posted by: Talya AT 03:40 am   |  Permalink   |  0 Comments  |  Email
Thursday, December 14 2017

If you have just read part 1, You will have learned: how heat can affect those who are vulnerable or sick or with an ostomy; what are the different heat related illnesses to look out for; what are the symptoms of the heat illnesses; and lastly, how/what to do under each situation.

NB: It is important to remember that this is just an informative guide only and I am not a nurse or doctor, and any individual circumstances or advisement is based on each person's own circumstances. If you have questions to follow it up with your team.

So in this Part 2, I will be sharing tips to help you be more prepared for the weekend

But just in case you haven't read part 1 yet, basically here in Australia we are preparing for an extreme heat wave which will occur over the weekend and most of Australia will be experiencing temps of 35'c-45'c+.


Image from Higgins Storm Chasing, providing a visual of just how much of Australia is to be affected

I have an ostomy, ileostomy to be exact, I also have other chronic co-morbid health issues/illnesses and take various medications which put me at higher risk of sun related illnesses.

I started writing this post a couple of years ago but never finished it in time for it to be relevant, so I am finishing it ahead of this weekend, I only hope it might help someone to be more informed of their own circumstances and to know what to do.

To read part 1, click here:

Also keep in mind anyone you know who might be at a higher risk of suffering with the heat, it could be a neighbour who is elderly and lives alone, or it could be checking in on a friend, just to make sure they are doing okay - as the heat can affect many in different ways.

Part 2: Being prepared and tips to surviving the heatwave

I thought it might just be helpful to share different tips to help you get through the heatwave, if you have your own be sure to comment.

Tip #1: Never leave kids or pets alone in a car
I know this hopefully is common knowledge, but you'd be surprised how many times I have been at the shops and found pets or kids sitting in the car while their parents or owners shopped. Even with the windows down or leaving the car running with the air conditioning going, the car is still going to be hot.

Even on a "cool day" this is a no-no. While the temp outside might only be 25'c the temps inside that car can be 55-70'c! It can rise 40 degrees hotter than the outside temperature, so imagine how hot it would be on a day during a heatwave.... scary to think. The damage it can do is increase a child's body temperature, which could lead to brain damage... not to mention what it does to pets too. 

I have seen videos and experiements where a chef has cooked a lamb while inside a car, to a vet documenting what it is like in a car. I do not suggest trying it out yourself, there are plenty of videos and information out on the interwebs about the consequences to leaving pets or kids in cars, which can be deadly.

A child left in a parked car under those conditions for even a few minutes can very quickly become distressed, dehydrated and can die from organ failure. If you see anything, you need to act quickly. If you wait, it can be too late.

What to do if you see a child or pet in the car?
The NRMA advises: You must make a judgment call as to whether it is a life and death situation and you would need to break a window yourself and call an ambulance, or whether you should call 000 and ask for police, who will get there as urgently as they can (and will break the window themselves) and they will call an ambulance.

If the child is clearly distressed, do not wait for help. Instead, break a window and remove the child from the vehicle until help arrives. If you break a window, and the child is simply asleep and it turns out not to be an emergency, it is possible that you could be required to pay for the window.

You don't have to be an NRMA member to call for roadside assistance if it is in less urgent circumstances. Because of the grave danger involved, the NRMA drops everything to respond immediately to calls where a child is locked in a car.

For pets: Visit Just 6 minutes, a site by the RSPCA which outlines that it takes only 6 minutes of a dog left in a car to die. Here is a factsheet of pet first aid if you can rescue the pet from the car and can wait until the owner arrives. Call 000 immediately and ask what you're legalities are if you can smash the window. But some states you can receive a $200k fine and imprisonment for leaving a pet in the car.

Tip #2: Have plenty of water
Water is important for helping you to stay rehydrated, make sure you have plenty to drink. Consider taking a bottle of water to someone who is experiencing homlessness, they might not have adequate access to water, it might not be a lot but it is a nice gesuture to look out for someone who is at high risk of heat related illnesses.

You should drink two to three litres of water a day even if you don't feel thirsty. 

Tip #3: Have electrolyte replacement on hand
If you're like me and have an ostomy and need to replenish lost electrolytes, make sure you have enough to get you through the weekend. I try and have a 1L bottle of sports drinks, I get the powder and mix in the water, and have a few of these made up in my fridge ready. You can consult with your Nurse or dietician over what is the best option for you to replace your lost electrolytes. Due to having no large bowel I am at risk of dehydration, which is worse in Summer and extreme heat. Salts and minerals are vital for your body's functionality.

Also important if you don't have an ostomy but have gastro or vomiting bugs during a heatwave too. Hydrolyte is an electrolyte drink which also comes in the form of icypoles too and can be found from most supermarkets or chemists.

Tip #4: Stay cool
This is important, especially if you struggle with body regulation, you need to find somewhere cool. Air conditioned is preferable, if your home isn't air conditioned maybe ask a neighbour or friend if you could join them, otherwise hit the shops and enjoy their air condiitioning too. If you don't have air conditioning find somewhere cool in your house and put on a fan. You could go to the library, cinema, art galleries, cafes too.

If you are outdoors try and find a nice shaded tree and be sure to keep hydrated.

You could also use one of those battery operated hand held mist fans Kmart have them for $5-$10, or a spray bottle with water in it to help.

A cool tip, get it (lol) I have one of my heatpacks in a zip lock bag and in my freezer. This turns into a cold pack and means I have a cool option too. I get my heatpack/cold packs from Chatterbox City.

Tip #5: Keep plenty of drinks in the fridge prepared
Fill as many bottles as possible and put in the fridge, some could be cordials or soft drinks, but limit the alcohol. Plenty of cool drinks will help keep you cool

Tip #6: Have ice packs or blocks in the freezer
Firstly, ice blocks or icypoles are a great way to keeping cool and hydrated in Summer. You could also freeze water bottles so they last cooler for longer, if you are going to the beach. Ice packs are good to keep on hand in case of first aid and if you need to aid in cooling someone down. See part 1 for how this works.

Tip #7: Keep blinds drawn
This will help keep your house cooler, even if you have air conditioning going, keeping the blinds drawn will help your system to not have to work overtime too. But if you don't have air conditioning it will still help if you have a fan too.

Tip #8: Wear light summery clothing
Avoid wearing lots of layers and wear something light and breathable, this will not only help in keeping your body cool but will aid in your body trying to regulate it's temperature. Avoid wearing dark or black coloured clothing. Clothing light in colour reflects the light better.

Tip #9: Be sun smart and sun safe
Slip, slop, slap. Sunscreen, a hat, sunnies and a shirt are not only safe ways of being out in the sun but also help in preventing melanoma. If you must be out in the sun keep out of the sun as much as possible - during a heatwave you should be minimising your sun exposure. Seek out shade.

Tip #10: Reapply sunscreen often
Even if it is overcast, you can still get burnt and when you're swimming sunscreen washes or rubs off after time, so everytime you come out of the water or as often as indicated on the bottle: reapply. Also if you do happen to get burnt, have some cooling after sun gel in the fridge to help your skin cool down, aloe vera fresh from the garden helps too.

Tip #11: Don't lie in the sun exposed
If you're planning on laying on the beach and reading a book, chances are you could fall asleep and get sun stroke. A heatwave isn't the right time to do this, seek out shelter or shade or plan your trip to the beach on a day where the weather isn't as hot.

Tip #12: in case of a blackout
It is important having items such as a torch, a battery operated fan, extra batteries, bottled water and first aid kit on hand in case of a power outage. Also, wrap medications that need to be refrigerated (such as insulin pens) in foil or place in an heat repellent container with some ice in case of power failure.

Tip #13: Open the house at night or evening if a cool change is forecast
This is self explanatory, but this might help to keep the house cool of a night or the next day if air gets circulating around, remember to draw the blinds early in the morning to keep the heat out and the cool in.

Tip #14: Pets or wildlife
Pets can be particularly vulnerable to the heat. Make sure they have shade and plenty of cool water to last the day. If you live near the bush, consider leaving a bowl or bucket of water out for any Koalas, kangaroos, dogs or cats or other animals that might want water.

Fill a kids clam pool sand pit thing with water and put in the shade and let your dog cool down when he needs to.

Tip #15: Keep your body cool but not freezing
It is important to remember that while you want to cool your body down that you aren't changing your temperature too quickly or suddenly. You could go swimming or lay in a bath if you run the cool water before the hot to cool down. You could set the sprinkler up or a water slide, brings back good memories being a kid and having a tarp and sprinkler on the yard and having a good old time. Just remember to be sun smart too!

Tip #16: Check in on those at risk
Keep a close eye on those most at risk, like the sick, the elderly and the young (a full list of vulnerable at risk perspns is in part 1). Do this at an arranged time at least twice a day. The heat affects everyone differently and adversely, be sure to make sure they have plenty to eat.

Tip #17: Watermelon
Would it be an Aussie summer without watermelon? I love watermelon, it is full of water plus it is a good source of electrolytes too! Make it fun by using cookie cutters to make fun shapes too. If you get sick of water, maybe have some watermelon to help replenish you. Your body will thank you too, it is oozing with benefits too. 

Tip #18: Foods
Enjoy delicious salads and cold meats for dinner, while a hot meal is delicious, it will only make you sweat and feel hot cooking away in the kitchen. But with the heatwave foods like strawberries, cucumbers, watermelons, celery, tomatoes and broccoli and lettuce contain water, which can be benefitial towards your water intake.

Tip #19: Wearing a stoma cover
I get rashes on my stomach under where my bag sits against my skin, especially when it is hot. I found last year if I wore an ostomy pouch bag cover it helped to relieve the rash as it wasn't plastic on my skin and it worked as a barrier between my skin and bag. If you find you get rashes too maybe speak to your nurse as she might have some bag covers or be able to point you in the right direction to where online you can find them. I had a friend make me some. Theres heaps of options if you google too.


My cover a friend made for me

Tip #20: Mashmallows
I find when I am dehydrated or in Summer my output is more watery. It is hard sometimes to keep my hydration up when this happens, but I have some marshmallows and immodium to help thicken my output. Sometimes a watery output is a sign of a blockage too, be mindful of this as you may need medical attention.

☟ ☟ ☟ ☟ ☟ ☟

I hope that you have found these 2 posts helpful on how to prepare for a heatwave with an ostomy, I know they have been long posts but there was a lot of information I needed to share with you. These posts do not replace the information of that of your nurse or doctors, it is a guide to help inform you of the risks and tips on getting through the heatwave safely.

Please be sure to seek medical attention if you require it and don't delay, heat related illnesses are deadly serious.

More Links through my research:
- On how medication/heat affects you:
- Heat related illnesses and what to do: NSW health
- SES heatwave fact sheet
- SES heatwave tips
- ABC heatwave tips
- Know your risk
- Heat and children: NSW health
- Cancer Council Australia slip slop slap seek
- Just 6 minutes pet first aid
- NRMA children in a hot car

If you have another tip, be sure to let me know in the comments below. To read part 1, click here

Posted by: Talya AT 10:15 am   |  Permalink   |  0 Comments  |  Email
Monday, November 27 2017

I am feeling a mix of emotions right now, I am feeling so relieved that the magazine is finally ready to be published and shared with the world... but that part terrifies me!

I feel guilty for the delay, health issues happened, but I still worked hard when I could manage to get the issue out.

I also feel mega proud right now!

I hope you enjoy this issue, there is some great content in there and work for issue 3 is underway (summer/xmas/holidays issue) so if you have any content you want to contribute get in touch asap, or keep an eye on the facebook page too.

If you're a business and wanting to advertise - we offer affordable advertising options and also offer affordable graphic design too. I am also open to collaborations, just get in touch.

I am really hoping you love this issue, there are 2 giveaways too.

In this issue I launch my NEW Stoma Diary, this is an ebook that you can download for FREE  and print or edit via your computer or tablet. It is aimed at helping NEW ostomates navigate the first 6-8 weeks post op and as they approach surgery. I have had my own stoma nurse look over it and she excitedly shared it with her colleagues too.

So sit back with a cuppa and have a flip through.

I have tried to get more male relatable content out there but struggling to get the guys to contribute, anyone that knows me knows I am stubborn and persistent and I endeavour to have more male content in here, I am trying my best so please don't be disheartened.

Finally, If anyone is wanting to join the team on a voluntary position I would love some social media help and develop a content strategy etc, I recently posted about this on the magazine facebook page too.

Anyway, have a wonderful night and I will anxiously await your feedback.

Posted by: Talya AT 12:02 am   |  Permalink   |  0 Comments  |  Email
Saturday, November 11 2017

CW: This post talks infertility, miscarriage and other heartbreak caused by having a faulty body


Our family photos Xmas '17, how tiny and adorable he was!

If you follow me on social media, no doubt you have met the gorgeous little furball Dusty who is a ragdoll x blue russian kitten. He has the most gorgeous blue eyes and has made every day over the past year filled with love, fun, adventure and cuddles.

Wait, 12 months on, is he still a kitten or is he a cat? I hate to think of him as a grown cat as he is wholeheartedly my little furbaby. I still like to think of him as this tiny little ball of fluff that relied on me.

Dusty has filled a void that I have had for far too long, and I know Russ will say the same.

Dusty is our baby, he is our child we never had and he is a spoiled little shit. I say that with lots of love. He has destroyed everything because he can, he makes a habit out of biting my ankles or backs of my knees, and he just throws tantrums if he doesn't get what he wants.... I love him, I do, but some days he can be a handful.

However, I know the huge benefit Dusty has had on my wellbeing, I believe he is a major part of why I am still here, he has filled our home and hearts with so much love, laughter, joy, and I know the last 12 months would have been a lot more lonlier and isolating if it weren't for him.


Russ and Dusty Hi-5ing as they visit me in hospital

Our Hopes for a family:

Russ and I have always wanted children, even before our first date 8 years ago he said "I am looking to settle down, to have a family, to find the one person to spend the rest of my life with". At the time the then 18-year-old me was like "hmm ok we'll see" it wasn't in my life's plan to have kids until I was at least 24, married and had a career and house. But then once we got to know each other, he supported me through several brain surgeries a month after we started dating, I knew there was something special about Russ and when he proposed a couple of months later I said yes. I was excited for what the future had in store for us, it was my chance for a new beginning and hopefully a family.

We had one misscarriage in February Valentine's Day (was the day of our engagement party) and it was the only successful attempt. We were shattered. We were hopeful that we would be a family one day.

Later that year we got married (July), then sometime after the wedding we learned that my dad was terminal with bowel cancer at 39 years of age and that it were a rare hereditary form that it was high probability that I too shared this gene. 

My doctors forewarned that I were likely to have cancer myself but wouldn't be until around 30 (boy they were wrong) and suggested we try and plan for a family right away and live our lives before surgery and cancer took over.

Our hopes and dreams as newlyweds of having the family we longed for were shattered now that we were gambling the life of a future child in our hands. We started meeting with geneticists, specialists, gynecologists, fertility specialists and counsellors to fully go over our options.

In 2012, 2 years after my diagnosis of FAP, I had investigative surgery of my pelvic area including my bladder and bowel.

I woke from surgery being told that I was in a medically induced menopause and that on top of the FAP I had severe stage 4 endometriosis and the chances of having a child with IVF was less than 1% and would be too costly.

So it was then that we put the plans of us having a family of our own to rest, we then said we would foster, adopt or get a kitten as Russ isn't a dog person.

In 2013, in the months that I were free of bowel cancer and rejoicing for my new lease on life after having surgery to have an ileostomy, we started training to be foster parents. In 2014, we learned of the new tumour where the bowel used to be and was told that I now couldn't be a foster parent until I had been 5 years cancer free and had a stable life - bringing a kid into a house with a sick parent could be traumatising for the child - so we said we would wait for that day to come.

Which brings us to 12 months ago:

We had moved into our own home, now as home owners we could have a kitten. We were scrolling through facebook one day when a lady posted a photo of Dusty and said he was available in 2 months time (late october). I quickly messaged expecting him to have been sold already, but to my surprise he hadn't found his forever home yet. Later that day Russ dropped by on his way home from work and paid for him and had his first cuddles with him.

Russ was completley smitten and in love.

It filled my heart with so much joy seeing the bond they've shared over the past year.

Dusty cuddles up to me a lot through the day and the night, but as soon as Russell's alarm goes off he shoots off the bed and meows all excitedly as he knows he is about to be fed. When Russ comes home Dusty runs to the door to greet him, Russ will pick him up for cuddles and often rolls around on the floor playing with him. 

It is a comfort some days knowing that Russ will not come home to an empty house once I've died, that he will always come home to seomone who loves him and needs him and I think (hope) that Dusty will be a great comfort for Russ.

I know a cat isn't a child, but Dusty is our little baby. He is funny, mischeivious, smart, playful and loving.

Dusty is so clever! He plays fetch. He learned when he was really little that I spend a lot of time in bed when I have bad days, so he learned if he wanted someone to play with that he needs to play on the bed as I am laying down, and it has worked really well.

He at times has sensed when I am upset or anxious, he often checks on me during my bad days, he also sometimes wakes me up by poking me in the face with his fish-on-a-stick-toy, but he has made me feel full and loved. He is so protective of me it is adorable.

I now feel like we are a family and we have Dusty to thank for completing our lives.

I know I post a lot of Dusty posts on social media, but most days he is the best part of my day and I want to share that with the world.

I always had been told that pets are theraputic, but until this past year I wasn't a believer. I get asked why I haven't died yet and what has changed in the past year and my answer is Dusty.


Have you got a little furbaby? Have you found the benefits they have made to your health and wellbeing as well?

Posted by: Talya AT 05:40 pm   |  Permalink   |  1 Comment  |  Email
Friday, November 03 2017

Recently, I was asked to be the Australian writer and contributor to OstomyConnection.com which is a site dedicated to being a hub on all aspects of ostomy life.

I was asked to write an article on:
20 Aussie Ostomates who you can connect with on Instagram.
You can read the article by clicking here.

Despite there being approximately 44,000 Australians living with an ostomy, it can at times feel frighteningly lonely and friendless, especially if you live in remote or rural areas of Australia (like myself). 

When I was 21 (in 2012), I was told that I needed a permanent ileostomy due to early stages of bowel cancer. I didn’t know anyone to help me understand ostomy life, especially my concerns as a young person (moreso, a young female) and navigating/living a fulfilling life. So I sought out a local stoma support group but at the time there was a 40 year age gap with the nearest age to mine, which made me feel more alone and unable to relate to them or their lives.

So .... I turned to the internet - particularly social media - in a desperate search for proof that a life can still be lived with an ostomy. At the time there weren’t many bloggers or people publicly sharing their life with a stoma, so it was hard back then to find “your people” or someone who just got you and could completely empathise with you.

Today, Instagram has a community of over 800 million users!

That is 800 million chances to find your community that you want to connect with or to be inspired by…. After all, a friendship is born at the moment that one person says to the other “What! You too? I thought I was the only one.”

One of the perks of social media is the ability to connect people and to help them feel less alone and isolated.

Whilst I know that there are thousands of Aussie Ostomates on Instagram, here are my top pick of 20 fellow Aussies that I know you’ll not only find relatable and awe-inspiring through the lives they lead, but that you’ll also love. Each contribute vastly to ostomy life.

I look forward to bringing you many more articles.

You can read the post here https://ostomyconnection.com/news-and-culture/20-ostomates-in-australia-to-connect-with-on-instagram 

 

Posted by: Talya AT 12:54 pm   |  Permalink   |  0 Comments  |  Email
Friday, September 22 2017

WARNING: This post discusses death, dying, suicide, euthanasia and could provide a trigger. Continue to read at your own risk. Opinions discussed are of my own and I have no paid or unpaid political affiliation with Dying with Dignity NSW, nor have I been asked to write on this topic. This is purely something that I feel deeply about and it is a topic I have been wanting to write for a long time. These are my views so please be respectful

I am not one to usually talk politics with you, but this is something that is quite personal for me and something I have had discussions with Russ at length about. It is a topic that is misunderstood or misrepresented in the media, in order to create fear and hate and divide people. This is more than just a topic for me, it is something I think about daily, and that is that I deserve to die with dignity and compassion.

This week (on the 21st of September) in NSW legislative parliament, a bill was presented to the NSW upper house called the Voluntary Assisted Dying Bill 2017. This bill was created to help terminally ill adults to die on their own terms with compassion, respect and dignity.

There has been many heated debates referring this to "euthanasia" which is misleading a lot of people, politicians included, by the myths and fear mongering tactics employed by those who are so loud in their opposition of this Act. According to "Assisted Dying: Setting the record straight" an e-Book written By NSW Dying with Dignity, euthanasia is referred to as "life ending medication administered by a doctor". Under the proposed bill in NSW, a person who is at least 25 years of age, of sound mind, who is living with a terminal condition and is estimated to be in the last 12 months of their life based on the opinion of several medical experts, and is Experiencing severe pain, suffering or physical incapacity to an extent deemed unacceptable to the patient, can SELF-administer a lethal substance to end their lives and if they are unable to they can nominate a doctor or loved one to help them.

There is a need for this, a need for a law that protects and has the interests of those (like myself) who are dying from cancer or other terminal illnesses to die with compassion on our own terms when we deem the pain and suffering to be too much AND give us dignity in our deaths.

I have read reports of persons ending their own lives under horrific circumstances as they can't face this anymore. I know there have been times I have considered this, not out of depression but merely out of desperation. How can I go on knowing that the pain and my quality of life will only get worse - I didn't have any hope for the life I could still live as it is so hard... then add the feelings of guilt knowing you are hurting those you love and the FOMO (fear of missing out) on life and it can be too hard to bear. So YES, I can empathise with how someone can choose this.

Then referring to the above comment can lead to families suffering after witnessing a loved one's traumatic or "bad" death. By choosing this law families could ensure they get to say goodbye, a person could feel at peace themselves knowing they have no unfinished business, a dying person and their loved ones could make a beautiful moment or ceremony or way to commemmorate a life before it was over and it could help them to have control over their deaths and give everyone a better experience of the death.... I am not saying the loss of a loved one is easy by any means, but it could help give comfort to KNOW that they were not in pain, they were happy and they were surrounded by love.

I know my biggest fears are dying in pain and dying alone.

It scares me everyday.

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But at the end of the day it comes down to the fact that I want to and believe that I should have the ability to die with dignity.

I remember back to my first university lecture on Ethics and the law when I was studying Nursing and the topic came up on Euthanasia. The whole room was literally divided and there were many debates, we even had to do an assignment on the topic. I got a High Destinction, but it was such a hard topic. I know then my heart was divided, I was being told that "NO, it is illegal" but my heart felt that morally it was unfair that someone should die in pain.

This lecture was before dad's cancer and many years before my own, but regardless of my own experiences of mortality, I do still believe that there can be dignity and compassion and respect in dying.

Because there are so many myths out there, I want to try and dispell some, to help show this bill won't affect anyone other than those who are terminally ill and living in their last 12 year of their lives.

Firstly, I am not saying my life or those with terminal cancer isn't worth living or anything like that, I believe in living life to the full and strongly belief life doesn't have to stop being lived. I plan on squeezing the most out of my life, and it is something I try to do everyday, but I know there will come a point where I am too sick and I am just simply existing and suffering in pain and only then is that when I want to say "hey let's do this". If this bill was already law (and it is something I have discussed at length with Russ) we would wait until we knew there wasn't much of my life left.

Truth be told, I have been told that my death is likely to be extremely painful and that pain meds won't help me... My pain levels now are barely managed and I am on high dosages already, knowing my pain is going to be tenfold compared to what it is now scares the crap out of me... I would much rather die happy and at peace... wouldn't you?

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Myth: This will hurt those who are vulnerable within the community.
I know there are a lot of arguments against in the community as it could hurt those who are vulnerable such as the elderly or those with a disability, those who are of low socio economic status or even those with mental health issues.
Fact: To be considered under this bill you HAVE to meet criteria including being in the last 12 months of your life and living with a terminal illness, be confirmed to be eligible by not 1, not 2 but 3 different medical professionals including your GP, specialist and a psycologist.
Fact: YOU CANNOT JUST REQUEST IT if you do not meet the criteria

Did you know? That under this bill you can change your mind at any time too. You won't be forced to proceed if you no longer wish to. It will always come down to your choice, afterall it is the point of all of this which is to give you a choice in how you die if you're palliative and 12 months or less to live.

Myth: Assisted dying is suicide, legalising it will ruin society as a whole
Fact: People who are dying and want to control the manner and timing of their death are not suicidal. I know I am not suicidal but I am going to die, I just want to die on my own terms and have control. 
Fact: Having a choice is empowerment, having dignity is empowering.

Myth: A doctor can kill any patient and can cover it up by saying it was an assisted death
Fact: Only a patient will be administering the medication and would have met strong criteria as well as having 3 medical practitioners sign off, it isn't something that can instantly be done.
Fact: as this is patient administered it removes the need for a doctor to assist, therefore they are not going against their hippocratic oath of 'thou shall do no harm'. Again, it is not causing harm it is offering dignity.

Myth: Doctors don't know when you'll die, only GOD knows, no one can know these things so don't listen to a doctor they are wrong all the bloody time
Fact: You can look at a patient's scans and assess an esitmated life expectancy, yes nothing is ever certain but doctors know what signs to look for in someone who has 12 months to live.

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I could go on about all of this for a long time, but you can view these myths and more in the "Assisted Dying: Setting the record straight" an e-Book written By NSW Dying with Dignity, to learn more about how this law WILL ONLY AFFECT those who need it.

I know it is a heated debate, I know some oppose it under religious beliefs, but do have a read up of just how important and life changing this could be to someone like myself - a young person dying from cancer.

Dying at 26 sucks enough as it is, it is painful, it is scary and most of all I have no control or relief. I know at some point in the next 6-12 months things will get a lot worse and more painful and I just wish that this was available if I felt it was too painful. Just to know there is an option to give me control in the end would give me hope that I won't be in pain forever and I could be at peace in the end.

I know I would only do this IF or WHEN the pain got too much, I would try and hold out as long as I could before. 

Please visit Dying With Dignity NSW to learn more or to follow the progress/updates of the legistlature or to read other people's stories on the bill.

Regardless of your personal stance on the issue, do consider reading up on the benefits this could help to people like myself dying from cancer. It might not be something that will be able to assist me through my death unless it is passed within the next 6-12 months, but it is something that could at least help those in the future to have dignity in their death.

P.S If you feel that this bill should be passed please consider writing a letter to your local MP to voice your concerns and to help get this bill passed. Click here to find out how you can help! 

Posted by: Talya AT 10:40 am   |  Permalink   |  0 Comments  |  Email
Sunday, July 16 2017

I am going to set a scenario:

You have been called back to your doctor's office to review recent tests done and while you're waiting patiently (and anxiously I might add) to find out what has or is going on you can't help but hope that you will hear these three words "ALL SEEMS FINE". You try not to think about what you will do if that doesn't happen as you don't want to "rock the boat" or whatever the colloquial phrase is.

You know speaking of things you tell yourself, I was in hospital once with this lady who told me that she "willed herself to get cancer" and that it is possible that I did too... It is safe to say we were not on the best of terms and those 4 weeks of my life were horrible!

So back to that Doctors appointment...

The door opens, the receptionist calls your name and you walk in and take a seat. There isn't often time for small talk and the Doc gets straight to the point. "The results are in.... the test show you have [insert illness]....". By this point you may have zoned out completley (why you should always have backup) and gone into shock, it is naturally your bodys way of protecting you.

But you will leave and head home, all while you are wishing you knew what the doctor said.

Instead you turn to DR Google and start googling your disease and symptoms. You shouldn't have gone there, you have opened yourself right up to trouble and a vortex of stress/worry! Dr Google brings up all this images and medical reports that are so grim and scary and you feel yourself on the brink of a panic attack...

You compose yourself and stop for a moment...

You know NEED support but you don't know where to turn... so that is where this post will hopefully provide some insight.

Where to find support and information after a diagnosis

I know the above scenario might seem over the top or seem unlikely, but I can tell you that it was from my own personal experience on how I handled situations where I got bad news.

I learned Google was not my friend nor was Dr. Google, I found after the first few times that it really wasn't helping the situation aside from making the diagnosis a bit traumatic.

But here are ways to find support without causing yourself harm in the process:

#1. Speak or consult with a professional:
If you felt you missed what had been said in your initial appointment, consider making a second appointment and bring a support person with you - in case you zone out again and struggle to rememeber what was said. You could consider recording on your phone so you can take notes later, or you could even take a journal filled with questions to ask away and write it all down.

When I was told that I had bowel cancer it was during my lunch break at work and I had just quickly ducked off to get my colonoscopy results back, presuming it was going to be another "all good see you in 6 months" type of appointment I wasn't phased and didn't take anyone with me. I did zone completely out during the consult and returned to work barely holding it together. I didn't remember anything after the initial words were spoken.

So I booked another consult and took my husband with me this time as he was eager to hear the plan going forward, and to be honest so was I. He told me the game plan going forward, my hubby heard it all as I zoned out again, but he referred me to a stomal nurse. She became my biggest life-line these past 4 years and has helped me on so many occasions.

By being referred to a health specific nurse, she not only became an invaluable aid and support but also someone who really knew her stuff and you felt safe in her hands. She guided me through the surgery, what an ostomy is, how it works, what a stoma appliance looks like, how it will feel, how or what would change... she also told me the support that was available to my husband as well as there being a local support group too. 

You could even find value in speaking to a professional like a counsellor or social worker to help you process your diagnosis, help you to even find the support networks available (they might be inclined to search for you) and there might even be financial help available as well (that you otherwise wouldn't know to access).

It is important to really get a good grasp on what is available, so don't underestimate the support from the professionals.

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#2. Lived advice and experiences are very valuable and helpful:
If you want to learn first-hand experience, or if you want to know how life will be like for yourself or maybe a loved one, then lived advice is always going to be the best. Not only can you learn about how it is to have the disease and any issues pertaining to life, but you can also know how to tackle that issue head on. You might find that the lived experiences to help inspire you on your journey. 

One of the benefits of learning from lived experiences is that it can offer you a perspective or advice that a Doctor or health professional might not necessary know, and while a Doctor might know the text book side of things they might not be able to give you a total view of things. Still refer to your doctor for any health issues and management, but don't discount the account of a real person either.

How will you find these types of advice?
Through blogs of course! A lot of people at different stages of their illness, diagnosis or life decide to start a blog. Sometimes the blogger is even happy to answer questions or allow you to reach out. Search (on google) your illness followed by blog and it may show up with blog names. Otherwise, sometimes on official sites of a disease there are links called "resources" where bloggers might be listed. You can always search youtube as well for any vloggers (video bloggers) who might talk about their health issue or journey.

HOT TIP:
If you are on social media consider searching via the hashtag use too, to help you find and connect with people sharing their lives online. For me if I were wanting to search for someone with an ostomy to reach out and connect online I might try: #ostomy #ileostomy #stoma #youngostomate #nocolonstillrollin. I could always try disease specific # too like #_diseasename_ e.g #cancer #bowelcancer #fap #thyroidcancer #endometriosis.

Keep in mind:
Some bloggers, like myself, talk about life authentically and openly with a chronic illness and disease. We don't do this for sympathy or to look for attention by showing the bad parts of our life. I know for me personally, I would find more value in following and reading a blog that talked about the good and the bad as opposed to sugar coating everything - it wouldn't be of much help if my lived experiences were censored. Just keep in mind that it can be raw, it can be emotional, it can be confronting but it is real!

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#3. Search on facebook for groups or support groups:
You would be surprised if there isn't a group out there for your illness or disease, with there being 1.94 billion users (according to Facebook's recent report), there would be someone out there with your disease looking to connect with others online. I thought when I was first diagnosed with FAP that there wouldn't be a support group, but even though it is a rare disease there are still plenty of people online looking for support.

You can also google "support groups for _INSERT DISEASE_" as there are some forums online and support websites dedicated to helping to support you during any stage of your illness.

I learned a lot from connecting with others in groups, especially about treatment options or stoma issues, so there is a lot of value in groups. 

HOT TIP:
If searching online don't limit your searches to a specific location or country, this will give you more chances for getting results. And don't be afraid to search on the 2nd and 3rd pages of google too.

Keep in mind:
With the group situation there are people in there from all stages of their illness or health journey, some might have more symptoms than others or might live with other co-morbid diseases. Some people posting could be posting about their current situation but that doesn't necessarily mean that it will be yours either, so don't let that scare you off from posting. Everyone is new to their diagnosis or reality at some point, so don't be afraid to ask for help or ask what other's stories are, just remember they won't all be the same story to tell.

Some members posting might be partners or parents of a person who is unwell, some groups only allow patient members to join others allow carers to join too. If you are a carer and if your daughter or son is in the same facebook group as you, be mindful of what you post ABOUT THEM, it is their story to tell afterall and you might disclose personal details that they hadn't told their best friends let alone strangers online, so be mindful of their privacy and respect what they have told you in confidence too.

One last thing I have to add is sometimes being a member of facebook or online groups can get a bit too much at times, I know when I am struggling myself I tend to either leave the groups or I turn off notifications so that I don't see posts on my feed, sometimes it gets too much dealing with your own health issues and being privvy to others' too.... it can feel like you just can't escape your disease, and sometimes you go to facebook to just escape life and it is hard when you are surrounded by your reality online too.

For me, I struggle a lot of times with my mortality and hearing/reading about a member of the group who passed away is really confronting. Friendships made online are real and just as much valid as real life friendships, so it can be hard at times when a friend passes away.

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#4. Ask your Doctor, Nurse, Case worker, Counsellor or Social worker for local support:
Finding local support can sometimes be hard, not everyone likes to be social and meet face to face or you might find a lack of local resources or people with your illness if it is rare. Your Doctors, Nurses, case worker, counsellor or social worker might be privvy to other support networks that you aren't aware of. If there isn't anything specific relating to your illness, consider asking your doctor or nurse if they have any other patients looking for support, like a buddy program or start your own support group!

You could offer to write an open letter that your doctor or nurse could pass on to local patients who might benefit from some peer support, be sure to leave your contact details on the letter... You could help be the change that is needed locally! Imagine, if you are struggling and feeling alone the chances are others are too!

Otherwise you could consider making a flyer (canva is a great place to start and east to use) and you could advertise your new group in the paper, on noticeboards or even online in local groups!

The above suggestions are just a few ideas I have used on finding support after a new diagnosis, if you have any suggestions feel free to let me know in the comments below!

I know that a new diagnosis is hard and can come as a shock but googling your diagnosis or illness will only cause you more upset and harm you, these are ways I have found support after a new diagnosis that is not only positive and supporting but it is constructive as well.

Dr Google doesn't always have the right answers and can lead to damage or traumatising you, which isn't what you need when facing a new diagnosis.

Take a deep breath and big hugs, there is always support out there just waiting for you to find it. It might not always be an easy or quick overnight find, but be patience and perservere, someone out there at some point felt alone too.

Please be kind to yourself, this is a hard and stressful time. Take some time out for you and self care and try and do something that makes you happy or takes your mind off things.  Here are some things I do for me and to add happiness to my day

If you're in hospital and are looking for things to do to pass the time, I wrote an article in issue 1: of The Ostomistic Life (pages 34-36).

Posted by: Talya AT 12:46 am   |  Permalink   |  1 Comment  |  Email
Thursday, July 06 2017
I know I am pretty slack when it comes to updating posts on my blog the last few months, I have been having fun microblogging over at Facebook and Instagram as it has been more convenient to do updates than to do a blog post due to my health (and sleeping 20 hours most days). If you're interested in knowing or understanding more about what goes into a single blog post and why it can take hours to do one post, the wonderful Micheala from Not Another Slippery Dip recently shared an insightful post which you can read by clicking here!

Sometimes ​the internet can be a beautiful and magical place,
I know I have seen the impact and difference that social media and the internet has made to my own life and those around me, but to see complete strangers come together on several occasions this past year to help us is truly heart warming. People whom I only know from their online presence and otherwise would not have met them, have became good friends to me and have helped to create what has been the most amazing 6 months filled with memories and moments I cherish and I hope that they will too for years to come..... this post is just one of those magical moments created!

Background:

So all the way back in March (I told you I've been slack with my posts) was Russ The Ostomistic Husband's 37th birthday! What eventuated from me feeling guilty that I had ruined his birthday actually became one of the most beautiful gestures I have seen from people from all over the world!

On that same day I was being admitted to hospital for a bit of a respite break and to get my pain under control, it had been weeks since I had felt some relief.

Russ had to work that day, so it was a pretty early start for both of us as we packed my bags and Russ got ready for work and dropped me off to the hospital before he headed to work. Thankfully, my room was ready and available (surprised as it was 7.30am) and he helped me to get settled before he left.

But I felt immense guilt, it was his birthday... his day to be spoiled and showered with love. After all he makes me feel loved everyday and especially made sure I knew how much I was loved by others with the gofundme page he set up for my garden, so I wanted him to know just how many people care about him too.  


Russ visiting me in hospital with our furbaby Dusty! High-5!

What came next:

After chatting with my friend Kylie from Kidgredients in the lead up to his birthday, she suggested putting a call out on social media and asking people to write "happy birthday Russ from __insert location here__" and then take a photo of that piece of paper with a little bit of the background.

I went out to dinner with Russ the night before I went into hospital as we both had a free steak from Hogs Breath as our birthday steaks (a part of the frequent diners club you get a steak during your birthday month), so while Russ was at the toilet I took the chance to write my birthday message on a napkin and ran outside to capture it. In the background above is the iconic whale fountain.

What came next from my post was unexepected!

I was blown away by the response and all the thought and love that was being sent my way.

I even felt like I had travelled the world in one whole day, and seeing all the locations - my heart was heavy with love and excitement knowing how happy this made me feel- I knew Russ would feel the same way!

So once all the images were received (there were hundreds!) I then sent them over to Kylie who then turned the collection of images into a video slideshow!!

You can see the video slideshow here!

Sadly, not all could be fitted on the slideshow and if yours didn't appear please don't fret as Russ sat there individually looking at them on my phone for the next hour, so it wasn't forgotten or unseen and he appreciated it so much.

So 5pm came around and shortly after Russ arrived at my hospital room. I then filmed him and his reaction on facebook live, which you can watch below.


Russ loved the beatiful gesture and seeing all the different locations

Russ' response:

Russ sat there re-watching the slideshow a few times and even sat there for a long time scrolling through all the photos. If you couldn't tell from the video above he was in tears. The love he felt and knowing that so many people cared enough to take time out of their busy lives to do this, really meant so much to him.

Russ is one of those amazing guys who does so much for others without hesitation or needing to be asked and he doesn't ask for anything in return. He is the most loving, caring, kind and compassionate person I know: and he deserves to be recognised and rewarded, even if it was just for one day - his birthday - it just meant so much to him.

It is hard most days just knowing how tiring it is for Russ to work full-time and be my carer too, as well as dealing with the rollercoaster ride that is my cancer journey. Some days he is surprisingly strong, but other days he struggles and looks exhausting... it is hard seeing how taxing all this is on him, so I just really wanted him to know how loved and special he is.

I am so grateful to Russ and for everything he does, he is one amazing guy!


Russ is known for his background antics in our photos - here he is licking my hair, don't ask!

Thank you:

I just wanted to say a special thank you again to everyone who made this happen and a special thanks to Kylie from Kidgredients for all the time and love she put into the slideshow for us. Kylie has some delicious recipes on her site, especially for kids and lunchbox foods, even delicious snacks that are easy to make. Be sure to pop by her site - you won't be disapointed!

Kylie, thank you again for this special memory Russ will never forget, and most of all thank you for being one heck of a wonderful woman and friend. You helped me to create something truly magical. 

 

Posted by: Talya AT 08:18 pm   |  Permalink   |  2 Comments  |  Email
Friday, May 05 2017

NB: This post was also written to be published on abiggerlife.com

This week marks 4 years since I had surgery to remove my large bowel and to live life with a permanent ileostomy due to bowel cancer. I was 22, and until only a couple of months prior I had no idea what an ileostomy was; I naively thought that anyone living with a stoma had a colostomy and didn’t realise that wasn’t the case.

So you can imagine how much I had to learn and understandably was very overwhelmed with information.

One thing I struggled knowing was what exactly it were that I needed to not only see me through my surgery but subsequent time recovering at home and in hospital.

So I thought I would share with you my 10 must-haves on surviving the early days of ostomy life!

I wished I knew these when my life with a stoma began 4 years ago...

#1. A hairdryer:
Do not underestimate the importance of a good seal around your ostomy appliance. This is usually achieved by heating up the base plate or wafer. Sometimes I find sticking under my breast or armpit can suffice, but I know in winter I struggle with body heat. Learn from my mistake and avoid having to send your other half out at almost midnight searching for somewhere that sold a hairdryer (no joke, this is what happened), thankfully there was a chemist open and voila my bag was finally sticking. I now take my hairdryer everywhere with me, even if it is only going away for the weekend! 

p.s It is also very helpful at drying your stoma bag after a shower if you aren’t needing to do a change and require it to be dry... we also use ours in winter to quickly warm up our bed before jumping in.

#2. Invest in some supportive garments:
Not only can wearing supportive underwear help to support your stomach after surgery and help with preventing a hernia, it can also make you feel more secure and safe when you are adjusting to wearing a bag and having it sit against your skin. I found wearing high waisted briefs helped me to feel secure with my bag tucked under my undies. I even found some sites online that made underwear specifically for Ostomates like Vanilla Blush or White Rose Collection (to name a couple).

With the help from my Stoma Nurse I was able to order some hernia belts from some of the companies/manufacturers. She helped to measure me and choose the right one to suit my body and stoma.

#3. Hydration:
When you’re an ostomate and have had part of your bowel (intestine) removed, you are at risk of becoming dehydrated and lacking in certain vitamins/minerals. Not only will you need to drink more glasses of water, but you will also need to be replenishing the electrolytes lost through your output. I met with a dietician and nutritionist who told me to have some sports energy drinks and hydrolyte on hand and to have one a day. I look for the specials and will buy a few bottles at a time, but I also buy the powder to add to water and reuse the bottles that way. It is always important to consult with your stoma nurse or dietician or nutritionist to determine what will be best for you, as your body will need to replenish the important stuff that you’re losing.

In summer if you sweat more or if you are unwell with a fever or a case of gastro, you may need to increase your electrolyte replacement drinks to avoid dehydration. Again talk with your healthcare professionals on what works best for your situation.

I also find the enery drinks can also help to thicken output as well

#4. Metamucil, Marshmallows, Jelly Beans and Peanut Butter:
These are a staple to have on hand, especially if you tend to have watery output as these tend to help your output thicken. Chat with your dietician or stoma nurse to see what would work best for you. I keep a pack of jellybeans in my stoma kit, just in case I do need some urgently.

hot tip: I take a few marshmallows half an hour before a bag change, I find it helps to manage my output a little better while I am doing a bag change.

#5. Gastro stop or loperamide:
My ileostomy output has always been all over the place, but I was advised (by my stoma nurse) early into my life as an ostomate to have some supply on me. Sometimes my output can be so watery or too much output and need it to slow down or I might be unwell, I take a couple of tablets to see if things begin to settle and thicken. It is important to seek advice on if this is right for yourself by your stoma nurse or to determine how much you should be taking as you don’t want to risk being blocked up either. I have a supply of tablets in my handbag and in my stoma kit (for when I am out and about) and I also have some in the bathroom.

#6. Linen and mattress protection:
My stoma tends to leak often and sometimes I will wake up with my bag having leaked. I found it important to have a waterproof mattress protector to protect my mattress. As an added measure of peace of mind for myself I also sleep on a “Kylie”, it is this padded with a rubber waterproof underlay and any leaks I do have don’t go through to my bed. It is really difficult to change my sheets and mattress protector on my own as my mattress is so heavy, so if it is soiled I just put it in the wash and put a new one on the bed ready for next time I go to bed. I found these at a home care aid store locally, or your nurse might be able to help source one for you.


My bed with a kylie

#7. Stoma supply storage:
Where or how you choose to do your stoma appliance change is up to you and differs on personal preference. For myself, I like to sit on the toilet when doing a change. I found a craft trolley with drawers and have it set up in front of the toilet so I can easily grab things. A friend I know likes to stand near her vanity basin and in her cupboard is her supplies for easy reach and use. It is important to have everything somewhat organised, as when you are mid change it is frustrating to search for something you need, so I have plenty of stock in easy reach and ready to go.

If you want to read a post I wrote on stoma supply storage inspiration, click here!

#8.  Wet wipes or Chux cloths:
I know it is personal preference how you might choose to clean your stoma when doing an appliance change. Wet wipes (like baby wipes) are handy for when you are out and about you might be forced to change your stoma in public, and without access to water these are a lifesaver! At home you might prefer to fill up a bowl or basin with warm water and use chux cloths to clean your skin ready for a fresh change. I tried different methods at home to see what I was most comfortable with until I found what worked best for me. I also make sure I have a pack of baby wipes in my stoma kit too.

#9. Scented garbage bags:
When I was new to life with an ostomy I would be overwhelmed each time I had to do a stoma appliance change. A few months after being home from hospital, my husband thought he would help by bringing home scented garbage bags from the store for me to try and see if it helped with the overwhelm of the smell. I have since used these and they really help a lot. I have a roll in my stoma kit I take when leaving the house and another for using at home.

Here is a post I wrote about choosing to use scented garbage bags and adding them to my stoma kit.

#10. Room spray or freshener:
I am saving the best kept secret for last, but you can thank me later! I was always so embarrassed when using public toilets and the stench of my output, that I started carrying around a can of toilet odourising spray with me in my handbag…. it only drew more attention to myself. I searched for compact sprays or spritzers that I can carry in my handbag or stoma kit and spray before I empty my bag or do a change. I found mine from scentsy or Poopouri but friends have found theirs from chemists or stores that sell scented wares. I take mine everywhere and is a lot more discreet.

Here is a little post I wrote a while ago along with the room spray I use.


See! It fits discreetly inside my kit

....................................

I don’t want to overwhelm you with too much information (I could be here for days sharing my wealth of knowledge), but these are the 10 best tips I have for managing the early days of being an ostomate. 

You will be sore for a while so listen to your body if it needs to heal and rest, as you have been through a massive ordeal, even mentally/emotionally/spiritually. I wished there were sites like a biggerlife.com when I became an ostomate, it really would have helped me to adjust to life as an ostomate knowing there is lived advice to help me on my way.

Posted by: Talya AT 09:13 am   |  Permalink   |  1 Comment  |  Email
Sunday, April 09 2017

One thing that I have noticed time and time again since I have been sick and spending a lot of time in bed, is that I often felt uninspired and unmotivated. I feel if I wake up happy or feeling somewhat inspired I usually have more energy to tackle the day.

It all started when I was having chemo, I was so sick from chemo that I spent almost 6 days out of 7 in bed and feeling like absolute shit house. My room didn't inspire me at all, I had a beautiful and comfy bed (a must when you're sick) but as we were renting hubby was reluctant to let me make the room my own. We knew we would eventually be moving house and it was just more things to have to move.

So in June I stopped treatment and entered palliative care.

A week or so later I went into pillow talk and my brief was "I need a quilt cover that will inspire me, motivate me but make me feel happy". I found the perfect quilt with the thanks to a sales assistant, who was undergoing chemo herself at the time and she really understood how important it was for me. I wrote away thanking her and Pillow talk HQ.

It has been 6 months now since we moved house and aside from the quilt and a print on the wall, it still felt like I was missing a little bit more. I had a bed side that felt so clinical and reminded me of being sick every time I woke up or rolled over, it was covered with needle bins from my clexane or boxes and sheets of tablets strewn over. It really reminded me every day that I was sick, and it had really gotten me into a funk of late.

The before☟☟☟☟

So I had been planning a little bedside table makeover for a while, well had talked about it.

It is school holidays and 2 of my siblings (Macka 14, Carson 12) came up to help me do things around the house, so we decided now was the time to makeover my bedside table but also my bathroom vanity.

So I am sure it ended up being the most memorable house clean or bedroom makeover they've ever experienced!

We emptied all of the contents off my bedside table into a basket to go under the bedside table for ease of access, then we dusted it down and went about the house finding items I had been collecting or already had.

Some of the items had been found on clearance or at a cheap price.

So I found some books on the bookshelf that I got for Christmas and have been meaning to read, and from all the images I have seen of "pretty bedside table stylings" it usually has books stacked on. The marble canister is good for hiding things like remotes for the fan, tablet sheets or jewellery.

My brother said it had to have a necklace in there too.

So this is the after, and while I am no interior designer, I am feeling pretty proud of how this looks... and I don't feel like I am reminded of being sick everytime I roll over.

The After☟☟☟☟

So now the memorable (and humiliating) part to the story....

The basket wasn't fitting in the cupboard when we knew it should and was as if something was blocking it. The door was closing but was still ajar.

My sister reaches behind the basket and pulls out a red dildo (I hadn't seen it in about 5 years and didn't care for it) so I had no idea that it was in there, so my face I assume was as red as the adult toy.

I still feel so embarrased, haven't felt so humiliated in a long time, but it will be memorable story to tell in many years time or after I am gone. I did try to say it wasn't mine, they laughed and said "what it is Russell's?" which had them even more confused when I said it wasn't... how embarrassing indeed!!

"Hey, remember that time at Talya's when we were cleaning her room and found a giant red dildo in her cupboard".

I can now pass on knowing at least I have left them with one solid and hilarious memory.

Note to self: KNOW where you have hidden such toys, preferably in a safe place no one will EVER find again.


Have you ever had a mortifying moment at the hands of kids? Comment below or comment under the facebook post, please make me feel a little less embarrassed!

Posted by: Talya AT 05:00 am   |  Permalink   |  0 Comments  |  Email
Saturday, February 04 2017

The moment is here - The magazine was born!

Welcome to the first issue of the Ostomistic Life, a free quarterly eZine dedicated to helping young people with an ostomy to navigate their lives. It is founded by a young ostomate for young ostomates... but anyone can read it.

When I originally started my blog it was because I was struggling to find relatable content because representation in the media matters and since was a passion of mine to try and help other young people with a stoma to feel less alone. I learned graphic design and had a dream of one day starting an online magazine... and I have!

I had originally planned this to be created and launched at the end of 2015 but I started chemotherapy and wasn't able to dedicate the amount of energy, time and love that this baby needed... which brings us to now!

I hope you enjoy the first issue, it has been curated with incredible content from an array of contributors as well as some pages to win.

Thank you for sharing in this exciting moment and happy reading.

ISSUE 1 | The Ostomistic Life eZine

I know I only have the Australian Stoma support groups/sites listed, I underestimated how long it would take to collate the whole world. I am still working on this and will be added as each page is ready (apologies)

If you love it let me know.

Work on issue 2 has begun, click here to sign up to receive the next issue straight to your inbox. For articles I am looking for or if you have a topic you want to discuss please get in touch. Some ideas can be found via the pinned post below or on the facebook page

Posted by: Talya AT 12:16 am   |  Permalink   |  3 Comments  |  Email
Friday, November 25 2016

Earlier this year, I was on a Canteen camp for members aged between 18-25. At 'camp' we not only talk about cancer but Canteen organises various workshops that help to teach us valuable skills, and often skills that we can implement in our lives right away.

Some workshops are about stress management and coping mechanisms, others are about learning to cook healthily on a budget (first time ever making hommus) and the ladies from Newcastle Permanent came to talk about budgeting and to teach us tools to succeed. I really enjoy all this money related.. I love saving money, I love frugal shopping, I love bargain hunting but I also love spreadsheets and budgets (yes I heard you yawn), I really do miss my days working in finance at a bank.

Another workshop we had was about gratitude, creating a gratitude jar and telling people when/whom/why we are thankful; we also talked about what makes you happy and the value of people and memories over materialistic objects.

We were introduced to the Science of Happiness, which was a video where several people were asked to think of someone they are thankful for, to write down why in a letter and then they were asked to ring the person to tell them.

The study concluded that people who were grateful or showed grattitude in their lives were in turn more happier than those who didn't.

I highly reccommend you check out the video on youtube by clicking here, it is such a heartfelt experience... well for me it was anyways.

I have been feeling a little overwhelmed lately with my life and been struggling with facing my mortality at 25, struggling financially, but I also have felt a little lost around my self worth and value. Now, I don't want you to roll your eyes and think I am asking for sympathy or being an attention whore, I'm not trust me, I do have an important message if you keep reading on.

I decided to join some of those blogging groups where you learn how to make a lot of money blogging, kinda regret joining as it has me feeling more pathetic than I was before I joined.

Now blogging for me hasn't always or ever been about the money, I blog because I want to help others so they feel less alone, but then there are costs to running the blog like hosting fees ($30 a month) and sometimes I wished I could find sponsoring to not only help cover the running costs of the blog, but to also give me a little bit of pocket money.

So in this blogging group a coach talked about how if your blog isn't gaining the attention of sponsors or advertisers than you must be doing something wrong and that there is no value in your blog if people aren't wanting to advertise that the readers (you guys) are being sent the message that it isn't worth it.

So you can imagine I felt pretty embarrassed, pathetic and wondered is it worth it all?

So fast forward to this week, where I got an email from a reader who said:
" Hi Talya, I know you don't celebrate thanksgiving but I wanted you to know that this year I am thankful for your blog and for your help you have given me.... Your posts about chemo and an ostomy helped me to be prepared.... I am glad our paths crossed"

I tell you what, I re-read that email several times each time with tears.

I felt pride, self-worth, appreciated and needed in the first time in a long time, and it was something I really needed to hear. While I see so many people reading my blog posts, I never know if anyone gets value out of them or if I am actually helping others. So it made the world of difference being told thank you.

I also realised that money isn't what makes MY blog valuable, it is me.

So it got me thinking just how good it feels to be told genuinely that someone is thankful for you or something you did, and that person also feels happier knowing they have made you happy.

So if there is a blogger who has helped you, please do ocassionally stop by and leave them a comment or an email thanking them, it made such a difference hearing that for me personally and I am sure other bloggers would appreciate it too.

While I have been feeling down lately that I didn't have much of a legacy to leave behind, I realised that this little blog of mine is what I am leaving the world with.

I ask (if you feel inclined to) that if my blog or my writing has helped you or made a difference in your life, please consider treating me to lunch or a mango smoothie by clicking through to my paypal.me account.

 

 

 

 

I am mostly housebound so being able to go out for a nice treat would really help make my day that little bit brighter. Would also help me to feel a little appreciated too.

Posted by: Talya AT 01:53 am   |  Permalink   |  0 Comments  |  Email
Friday, September 02 2016

I am often asked and often daily, how do I remain so happy or positive despite everything going on in my life.

I am a big believer in self-care practices, and one of the tools incorporated into my day-to-day routine is doing at least 1 thing for me or something that I know will make me happy.

I also designed myself a 2016 calendar, with each month a different quote or positive message to myself. I look at this daily and it is pinned above my computer as a reminder of not only what needs to be done that month but a positive message to live by too.

A big part of my bucket list (also calling it my happy list) is mostly things that I want to achieve because I know that will make me happy.

But I also know that no matter how bad today gets, the sun will come up tomorrow and it is a fresh new day.... there are 365 days in the year and that is 365 opportunities to make yourself happy!

So I thought I would share at least 5 things I can do to make my day that little bit brighter.

#1. Learning to say no and knowing my limitations or delegating:
I have found that if I am feeling a little overwhlemed during the day or over a week I will set myself the task of trying to say no, especially to things that I know I either don't have the energy to deal with or just I know it is something I really don't want to do. If it is something I know can be done an easier way or know someone who could probably do it better than I could I delegate that task/chore.

#2. Crafting or creating:
I know a lot of people think that they're not creative or don't have a creative bone in their body, but I don't think this is true. I think everyone has the ability to be creative one way or another. It could be something like expressing yourself with your outfit or hair or makeup. For me, I love craft especially papercraft and can completely zone out. I also like designing things on the computer too.

#3. Writing or journalling:
I write a lot everyday... I write lists, I write blog posts (even though I have no intention of ever publishing some) or I write goofy love notes to Russ. One thing my dad did before he died (that I didn't get until afterwards) was a letter he wrote to me and it is something that I cherish. I am working through a list of people I am writing letters to, which are to be given out after I die. This also comes into the next step too.

#4. Grattitude:
I am so grateful to a lot of things and especially to a lot of people. If someone has done something for me, even if it is just a small token, I like to make sure they know that I am grateful to them. I also have a grattitude jar where I write down something that has happened that day or something someone said or did and then at the end of the year I read back through and find reasons that made me grateful. 

#5. Do something for someone else:
Whether it be dropping around a meal if they're having a hard time, or taking them out to coffee, even as little as watering their plants while they are away is a kind gesture to do for someone else. I like to try and find at least one person I can help or do something for of a day, and it makes me feel better about myself as I did something for someone else. Even smiling at someone (a stranger), or saying "hi" or giving a compliment can help boost their day and make them smile!

Bonus - Do something for me:
This might sound strange given my whole list is about doing things to make me happy, which in itself is doing something for me, but I try and do one specific thing that can be selfish or indulging... but it is something just for me. Like today, I was having a stressful week and was in a grumpy mood so I went and treated myself to lunch overlooking the ocean, was just me on my own, and it was nice just doing something outside of the house and something that I needed (you need to eat). Other things could be getting your hair done, having a facial, eating a nice caramel tart or buying something that I want just because. I also like to chat to friends or browse sale sites for a bargain... Russ tries to say I am most happiest when spending money (he is a comedian or so he thinks). You might even enjoy going for walks and find walking (or running)  makes you happier.

P.S Tell me, what do you try and do that makes your day happier or brighter?

 

 I ask (if you feel inclined to) that if my blog or my writing has helped you or made  a difference in your life, please consider treating me to lunch or a mango  smoothie by clicking through to my paypal.me account

 I am mostly housebound  so being able to go out for a nice treat would really help  make my day that little  bit brighter. Would also help me to feel appreciated too.

 

Posted by: Talya AT 09:57 pm   |  Permalink   |  1 Comment  |  Email
Friday, August 26 2016

Today, and as it seems a lot lately, I am constantly met with doubt and disbelief when I share my story/prognosis or the fact that I am 25 and terminal with cancer. It almost always makes me feel like people assume that I am making it up.

For the past year my husband and I have been working on a new segment/section of my blog called 'The Ostomistic Husband' which will be posts and topics written by him and in the hopes of showing the perspective of how a spouse feels or views their loved one's illness. 

So, take it away Russ!

☟  ☟  ☟  ☟  ☟  ☟  

All too often I have Talya tell me how annoyed and upset she is because someone has just told her, “You can’t be dying. You don’t look like you’re dying of cancer so it mustn’t be that bad”.

I’m sure you have heard the same from someone you know with an illness; it seems to be all too common.

I myself believe I have a mild autism which makes me: crave routine; shy away from human interaction; find it difficult to create and nurture relationships as I don’t readily say what I feel inside; have processing issues regarding certain tactile sensations, etc.

These things are not visibly apparent and are not easily discernible even when you are interacting with me.

Why? Because I’ve spent a LOT of time learning how to go about my day, to fit in without drawing attention to myself unless I feel safe to do so. As such, it pains me to hear that Talya is being judged by her outward appearances and not by the effort she makes to display her frightening lifestyle in a manner palatable for those around her. She is always trying to alleviate others…

Fear.

I think that is probably the major force behind the “You don’t look like you’re dying of cancer so it mustn’t be that bad” line.

No-one wants to admit that a young person as outwardly vivacious and spirited as Talya could be dying inside, because that means that they too, may have something as monstrous within them (and not show any signs).

After all, they look fine. Don’t they?

Talya and I see this very differently.

She feels that people are constantly attacking her; sometimes bluntly and sometimes in a back-handed way.

I feel that people are constantly protecting themselves; outright denying the facts about her health (in fear for their own mortality) or suggesting that it can’t be as bad as all that (simply hoping that it could be true, were they in that position).

People don’t want to accept change, they are afraid of the unknown. I get that, more than most.

In the private studies I’ve made on human nature, and by simply watching people react to a situation then react to their own reaction, I believe that people are generally afraid inside (and what a perfect evolutionary trait in self-preservation that is). Some have learnt to deal with that most primal of instincts internally, while others still say, “You can’t be dying. You don’t look like you’re dying of cancer so it mustn’t be that bad”.

All in all, I feel for Talya a great deal in the aforesaid circumstances but I remind her that she is simply better at hiding her pain than some others are at dealing with their fear.

I say, “If they want to blurt out hurtful statements, without understanding what you are going through, to make themselves feel better, that’s on them, not you. But please, see it from their point of view too”.

No-one wants to live in fear.

 

About the Author:
Russell, a husband in his mid 30's, is a computer salesman by day and a unicorn husband by night*. He enjoys long walks on the beach, playing Pokemon Go, he loves lamp, and he loves all things nerdy! He hopes through his writing and sharing of his experiences of having a young and terminally ill wife, might help other men to understand what not to say (to avoid getting yelled at) or how they can better support their loved one. If you want to connect with Russ (or send him topics/questions or areas of concern you have) send him an email via russell @ feelingostomistic.com.au. Russ really loves his wife and wants her to enjoy what remanining time she has, so he has asked for help to build her a garden escape and needs your help ---> click here to read more about the why behind the garden.

*He is the sort of husband that everyone wishes were real, but doesn't believe actually exists.

 

 I ask (if you feel inclined to) that if my blog or my writing has helped you or made  a difference in your life, please consider treating me to lunch or a mango  smoothie by clicking through to my paypal.me account

 I am mostly housebound  so being able to go out for a nice treat would really help  make my day that little  bit brighter. Would also help me to feel appreciated too.

 

Posted by: Russell AT 02:12 am   |  Permalink   |  2 Comments  |  Email
Monday, August 22 2016

NB: This post is purely satirical... proceed to read with sarcasm

Recently, I was called Gross.... I was asked "how can you live like that?"

Well, I can and I do, and it is pretty simple. I wake up, I live my life and do stuff through the day and then I sleep... and repeat! See, easy!

You see, my daily routine is somewhat similar to a 'normal bodied routine'... I say somewhat as it is slightly different as it involves me essentially shitting myself 24/7 (oh the horror) but I can point out many similarities to our daily routines...

A typical day of mine goes like this:

7-8am: I wake up in the morning, and one of the first things I do is go to the toilet. Nothing like that first pee in the morning, except I also have to empty my bag. Which is usually mostly air, as most people fart all night. I fart too, just you don't smell or hear mine as it is trapped in a stoma bag.

8.15: I am sure this is where you take your coffee, the one thing that you probably need to get you through the day? I consume something too, my medication (thyroxine, endone and folic acid), I need these to survive and can't live without.

8.20-8.30: Just as my husband is getting ready to leave for work I call him in for a quickie.... he quickly jabs me and he puts on his shoes and then is off on his merry way. Then he can rest easy all day knowing that he helped to keep me alive that day with my blood thinning injection.

9-11.59am: The elusive siesta... some might call it sleeping in, some might call it taking a nap. You probably prefer an afternoon nap, but I have mine in the morning so by lunch time I am wide awake.

12-1pm: I have lunch.. this may vary day to day from leftovers the night before to eating dry crackers. If I am feeling adventurous I might even go out for lunch.

1-5pm: I would call this my 'work time'. I only have a 4 hour work day and mostly my work involves writing a blog post, designing fun little pictures.. who am I kidding, I am on facebook and shopping.

5.30pm: My husband comes home and cooks dinner. Dinner is usually something fancy like bangers and mash. In our household we aren't atypical to the stereotypes of the roles of a 1950's housewife; my husband does the cooking, the cleaning and the bringing home of the bacon.

6pm: We have dinner, talk about our days (he acts like I actually did more than just sit on fb all day) and then we just watch netflix and chill

7pm: We have our showers, everyone needs to shower. I just happen to need to do a bag change afterwards.. No biggie. We all need to change our underwear everyday (and my stoma bag is the underwear of my stoma)

7.30pm: Husband goes to the study and does computer related stuff (as he hasn't just spent all day around computers) and I go to my office (the dining table) and belt out songs. This goes on until bedtime.

8PM: Husband comes to give me another quick prick for the day, ensuring that he has kept me alive for the night.

10pm: We head to bed and read. Well, he tries to read; I just try to have a chin wag and nag at him about what he didn't do or needs to do the next day.

Annnnnnnd then I go to sleep.... and get ready to repeat it all the next day!

So that is my typical day, but also throw in having to do a bag change whenever I just decide to shit myself (you know because I have control over that and all).

So I am sure there are many similarities to our day... we all eat, sleep and shit. I just do it a little differently to you, but doesn't make me gross. Who wants to be normal when you can just be unique?

Oh, and having a stoma isn't the worst thing in the world.... some people have a stoma as it was either that or death.

It can be rather convenient too!

Imagine you're standing in the long queue at Big W to do the no deposit toy laby, and all of a sudden you need to do a poo! Oh what are your options? Either leave your trolley unattended in queue while you run off and pray that no one steals your loot or your spot in the line, or you just stay and wait and have an accident? Well, for me I can just do a number 2 at any time of the day and it conveniently collects into a pouch (that doesn't smell I might add) and then as it is full I empty into the toilet. No more missing out on sales for me!

But tell me, aside from now pooing differently has your life changed too much with a stoma?

 

 

 I ask (if you feel inclined to) that if my blog or my writing has helped you or made  a difference in your life, please consider treating me to lunch or a mango  smoothie by clicking through to my paypal.me account

 I am mostly housebound  so being able to go out for a nice treat would really help  make my day that little  bit brighter. Would also help me to feel appreciated too.

 

Posted by: Talya AT 07:05 am   |  Permalink   |  0 Comments  |  Email
Monday, August 01 2016

Last year I heard about this incredible organisation called Share the dignity, which is a charity that helps to support homeless women and women in need when it comes to 'that time of the month'.

Their slogan is "no woman should have to choose between buying food or buying sanitary items", this really struck home for me.


Image courtesy of the Share the Dignity facebook page

When we often think of homeless or poverty we imagine people living on the streets, in their cars or in refuge shelters. But this isn't always true. You can have a roof over your head and be poor or poverty stricken.

According to the Australian Council of Social Services (ACOSS) there are 2.5 million Australians living under the poverty line, which for a country deemed 'the lucky country' that seems like an awful lot to me.

When the campaigns from share the dignity were being shared around on social media, there were comments that I observed that went along the lines of "that is an exaggeration surely, you aren't that poor that you can't afford pads or tampons or choose between that or eating"... as I said it was the general gist of the conversations going round.

But I know firsthand how stressful and hard it is when you do get your period and you honestly have to make the decision between buying pads or food... because it happened to me on several occassions.

When I was a teenager I felt embarrassed each month to ask for pads or tampons as I knew they were another expense we couldn't really afford (and I felt guilty asking). So when I got my first job I was rather elated that I could take responsibility for myself and I had money to buy pads and other personal care items I needed. I was independant and I didn't have to ask to buy them as I was in control of my own money.

I took living at home cheaply for granted and it wasn't until I moved out of home that I realised that rent and living expenses are so costly!

The day after graduating year 12 (Nov' 2008) I moved to Brisbane and was living in share housing. My rent was $100 a week and all the utilities were shared. I needed to pay for a train ticket to and from work and leading up to Christmas I had a lot of work and was doing okay... then Christmas came and went and the hours dropped to 8 hours a week which was $80 there about. I wasn't entitled to centrelink as my dad earned too much (even though he wasn't financially supporting me, it didn't matter to them). I was struggling to find another job and I was struggling to pay my rent and had to keep borrowing $20 off of a familly member each week to cover my rent. I didn't have money for food, I didn't have money for the train, I didn't have money for pads. I tried to stay at my boyfriend's house through the week so I could eat... it felt so humiliating!

Then my plans to study at university in QLD fell through, and I was offered a HECS supported place in Coffs Harbour so I moved. Centrelink finally offered me youth allowance which was $290 a fortnight. The house I was renting was $145 a week so my centrelink was consumed by my rent. I had to resort to borrowing $20 each week (off of family) so that I could buy food and pay for the bus to uni (I couldn't afford petrol). I tried so hard to find a job but I kept getting knocked back. I was a struggling uni student.

But there were times where I had to choose between food or pads, and it was a difficult decision. I have endometriosis so my periods were always rather heavy and it meant that I needed more than 1 packet of heavy pads each month, and I am allergic to pads but found the Libra overnight pads to irritate me the least (but they were costly)... but for that week that I had my period I was literally living off of those cups of noodles that you add hot water to and it cooks it... there were nights where my housemates took pity on me and would cook extra food that night so I could eat properly.

Then I moved into a cheaper share house where the rent was only $120 a week so out of my $290 a fortnight payment I now had $50 a fortnight. I felt so rich! I didn't have to call up family desperate for $20 anymore and my housemates cooked everynight and were happy if I gave them money towards groceries and they let me eat with them... also meant I had money for pads each month.

Unless you have been in that situation, you don't know how satisyfing and what a relief it feels to know that you don't have to choose that week between eating or buying pads.

At the end of 2009, my situation changed and I moved in with my then boyfriend (now husband) and his rent was only $180 a week so we went halves and it meant my fortnightly student allowance could go even further.

How you can help to share the dignity.....

So this August I ask you when you're next doing your groceries to buy an extra packet of pads or tampons and drop off to one of the Share the dignity collection points, so that they can be distributed to charities such as womens shelters to help women in need to have dignity when it comes to their period.

To find a collection point or learn more about what they do, visit their website.

P.S they also have a #itsinthebag initiative where they ask you to fill a handbag with a list of essential items and it is handed out to homeless women at Christmas. I am working on 3 of these handbags to pass on, these are handbags I was no longer using (and still in good condition) so what a better way to give them a new purpose! Find out more about this campaign here.


Image courtesy of their facebook group

 

 I ask (if you feel inclined to) that if my blog or my writing has helped you or made  a difference in your life, please consider treating me to lunch or a mango  smoothie by clicking through to my paypal.me account

 I am mostly housebound  so being able to go out for a nice treat would really help  make my day that little  bit brighter. Would also help me to feel appreciated too.

 

Posted by: Talya AT 02:10 am   |  Permalink   |  0 Comments  |  Email
Monday, July 11 2016

Canteen is an organisation (charity) that provides support and help to young people (like me) aged 12-24 to help them on their cancer journey. You might have heard about Canteen through their National Bandanna Day campaign that runs annually each October.

When I was younger I had a beautiful little sister who was fighting her own intense cancer battle, and canteen helped our family out with support and ever since then and after my sister's passing we continued to support Canteen through their National Bandanna Day, our way of saying "thanks for the support".

It wasn't until after my dad died in 2012, that we realised that Canteen was there to help us through our dad having cancer and then dying, we thought it was just for people who had cancer and didn't know we could join too.

It was a few days after my dad's passing and my siblings weren't coping, so I looked into signing us up and a short time later we went on a 'New Member's Camp' where we weren't the only new kids on the block.

What I didn't know at the time was that I had found a place where I belonged and could turn to when I needed support... I also didn't know just how much I would come to rely on Canteen.

After the camp I kept in contact with the staff at my local division and accessed the counselling support.

Late 2012, I was told that I had early signs of bowel cancer and that I required my bowel to be removed in the coming months. I turned to Canteen for help and support as I made the decision to have my bowel removed and live the rest of my life with a permanent ileostomy.

Because of my surgery I didn't go on any programs during 2013, mostly out of anxiety around living with a stoma but also I was in and out of hospital with pancreatitis that I just kept missing out, which again happened during most of 2014. I was going on an over 18's program but instead was in hospital the day before camp started.

During this hospital admission they did a scan and found there was a tumour, I then travelled backwards and forwards to Sydney for consults with specialists and having scans done.

Canteen were fantastic, the staff touched base with me each week and when they were in the local area they would invite me to coffee to see how I was going.

I decided to say thank you to Canteen for their support and organised a Halloween themed high tea fundraiser, which was an absolute blast and success raising $1200 for Canteen and is an afternoon that guests still talk about.

Then in early 2015 I had a PET scan and it showed my tumour had now doubled in size, I had a new tumour growing and that I also had thyroid cancer.

I turned to Canteen a lot during this year, and I was involved a lot as a camp leader or helping to plan different programs (even though I wasn't able to attend for health reasons). I offered up my graphic design services and would design different flyers and posters or invites for camps, I loved not only having something to do but to help in my own way of saying thanks for being there for me.

I actually just got home from an Over 18's program, and I am so glad that I went... During the past fortnight I was told my chemo was to be stopped and that there were no more treatment options going forward and that palliative care were called in to help manage my pain and symptoms and to help me feel more comfortable.

The past fortnight has been extremely tough to deal with, and I just really needed to escape and get away and just talk to people my own age with their own experiences... to talk with peers who 'get it'.

I had so much fun on the program, and despite being in a lot of pain I really enjoyed myself. The staff were amazing going above and beyond to help me, and the member's who attended were so kind and accepting.

To be honest, Canteen is the one place that I feel accepted and valued and not judged, and I think that is why Canteen works so well.... it is a safe place for you to explore your feelings and dealings with your cancer journey and you are surrounded by people who are as well. 

I honestly don't know how I would have gotten through and navigated the last few years without the support and help from Canteen, and for that I will always be thankful and appreciative of all the times that Canteen was there when I needed them.

I age out of Canteen this year, so that was my last camp. I still plan on keeping in contact with the staff and offerring my graphic design services. But I have made some amazing friendships through Canteen that I will continue to cherish and keep in contact with.

If you are a young person aged 12-24 in Australia, or know someone who is affected by cancer (whether it be themselves, their parent or sibling who was/is sick) please let them know about Canteen by clicking this link.

Posted by: Talya AT 03:45 am   |  Permalink   |  0 Comments  |  Email
Friday, May 20 2016

When I talk to a lot of my friends or peers who aren't sick I realise just how different our current life stages are.

I have some friends that are busy planning their weddings (which I am loving being involved as I just love LOVE and weddings and all things happy) but I am at the stage of my life where I am planning my funeral and my list of wishes I want to do before I kick the proverbial bucket... but just because I am planning my funeral doesn't mean I have given up or that I am not being optimistic or ostomistic I should say about my situation.

While I feel a little sad that this is my current reality, I am in no way giving up so please don't tell me that I am.

For me, planning my funeral and writing a bucket list or as I prefer to call it my 'happy list' I feel is somewhat empowering and it makes me feel I have control over my situation, and control is something that is often lacking when you are sick, especially terminal.

Why is it empowering you might ask? Well it is simple really... it means I have control like I said just before, but it also means that when the time comes my family and husband won't be left wondering what I wanted to have done.. and I have seen the arguments over funerals and who organised what or didn't organise and I want to spare my family that extra stress when they are grieving... albeit they will have to make arrangements and finalise the order of things like flowers and food as I don't know when I am going to die (and this is the hard part about planning your funeral). But I am planning on having everything written down and instructed and planned so all they need to do is make a couple of phone calls and order things... I want it to be simple for them and want them to feel stronger that they don't have to make these decisions.

One thing I am struggling with is having my family and friends involved in helping me plan my funeral.. which it will be more a party/memorial service as I plan on being cremated so there won't be a body. But, no one is wanting to help me and I understand it is hard for them but I just wished I could talk openly and be supported without feeling like I am upsetting them. And I don't want them to read this and feel obligated in anyway to talk with me or help me plan, it is just one of the hard things about my situation is that it is hard on those who love me.

I want a party like service where everyone is to wear colours, and I want to find bio-degradable balloons that I can have released, I want bright flowers, I just want it to be bright and bubbly like me and not dim and black and depressing because that isn't me.

I am working on a concept for my funeral called a 'waste free funeral' where things like flowers can be donated to nursing homes or people in hospital doing it tough to make their day brighter, or left over food to be given to homeless shelters or like the balloons I don't want them to impact on the environment. I want to have a great send off but I don't want to hurt the environment or others, so I want to give back where I can and this is my way of doing so.

But please, if I am wanting to talk to you about my funeral and I am all happy and chirpy please just think about what you're about to say as it hurts me when you say things like "well that is too depressing to talk about", or "why are you giving up" because I don't want to do this alone and I am not sad or hurting about this decision... as I keep saying it is making me feel empowered.

Posted by: Talya AT 07:39 am   |  Permalink   |  0 Comments  |  Email
Tuesday, February 23 2016

I know having a loved one in hospital or unwell can be rather distressing, and I know more than anything just how much you want to help them get better.

I myself, have spent a lot of time in hospital and after a recent surgery with a hospital stay I thought that I might give you some ideas or suggestions on how you can support a loved one while they're in hospital. I guess these could even apply to when a loved one is at home chronically ill or unwell.

When a loved one is sick, you don't have to buy flowers to show them you support them. Here are some ideas to help you next time:

Suggestion #1. Calling them
I know that you're concerned for them and want to call them daily or every other day for updates but as much as I know you care and want to support me this actually is something that I find frustrating.

You see you might call me once a day, but so are a lot of other people all asking the same questions so I feel like I am constantly repeating myself and all the phone calls can become rather exhausting after a while, or you might just be having an 'off' day and just want to be left alone.

Also keeping in mind that when someone is in a hospital room sharing with 4 other people it can be hard to have an actual conversation without feeling like everyone in the room is listening... there just isn't privacy when you're in hospital and this makes me uncomfortable so I prefer to text or facebook message.

Solutions:
#1. Nominate one family member to call and relay the message back to those who are asking. Or if too many are upset they're not getting a turn to speak to the person in hospital create some sort of roster and take in turns of calling and relaying the message to others.
#2. Send a text message before calling and ask if now is an ok time to talk, as they might be asleep or might not be up for a chat. If they don't answer straight away then they aren't available, but they can reply when they are.
#3. Send texts instead of calling as it can be easier to reply to when they're up to it or as I mentioned above I prefer text is just more private than having a conversation in such a public room.

Suggestion #2. Flowers
I know when you're visiting or thinking of a loved one your first instinct is to buy them flowers. But flowers while they are beautiful and can make someone feel loved and smile, they also are rather expensive and will die.

Instead of buying flowers think of practical things they might need and either are unable to go buy it themselves while they are in hospital or they mightn't have the funds to purchase (especially as money can be tight when in hospital and if they have to take time off work to be there).

Solutions:
#1. If they have a laptop and are using a prepaid wireless dongle, purchase some credit or recharge for them to use
#2. If they have an iPad and enjoy reading books purchase an iTunes gift card so they can get some new books to read
#3. Make up a little care package with some comfy slippers and essential toiletries if they were in a rush and didn't get to pack these even include an eye mask and ear plugs to help them sleep a bit better
#4. If you know that they've been colouring in to keep them occupied you could buy a nice set of pencils or colouring in book in case they have used up all their book or pencils
#5. If you drive past their house and notice their lawns are looking a little neglected offer to give it a mow, or keep an eye on their pets it can be a stress they don't need to worry about

Suggestion #3. Food
Unless you're in a nice private hospital, the food in most public hospitals I have been in can at times be rather inedible leaving you rather hungry and annoyed.

I spent so much money this last admission on food as I found myself having to resort to the hospital's expensive cafe in order to get something that was half decent to eat. But sometimes you don't have the option to walk to the cafe to get food.

Solutions:
#1. Offer to bring in a nice home cooked meal for them to enjoy
#2. If there is a cafe but they're unable to walk there themselves offer to go get them something enjoyable
#3. Pick up or arrange delivery of some yummy take away and sit somewhere in the hospital and have a meal and chat

Suggestion #4. Make them feel at home/comfortable
When I am in hospital for long periods of time I quickly become homesick especially when home is so far away. For me I have some things with me that makes me feel comfortable and a bit at home which are some cushions/cuddle pillows (I can't sleep without cuddling up to these cushions) and also have my Redkite blanket with me.

These are some things that I find brings me comfort but others might find comfort in having a photo on their bedside of their family.

Solutions:
A reader suggested after reading this post, that if they have pets it can help with their recovery and feeling more at home if you brought their pets in for a visit. There might be a garden or somewhere close by that you can sit at, and if you can't walk far you might be able to be wheeled out in a wheelchair. She went on to say a visit from her fur babies really helped her in her recovery.

Suggestion #5. Respect their privacy
When you're in hospital you can feel vulnerable and often feel like you have lost dignity. But when you are visiting a loved one it is important to be mindful and respectful of how they might be feeling and to not make them feel worse.

Don't take a photo of them without their consent, and especially don't go posting that photo on social media.

Another thing you shouldn't do is share things they have told you in private or that the doctors may have said without their permission, this goes for social media. I know that your first instinct is that you want to update people on their condition but don't give out the specific and private details of the ordeal, not everyone needs to know the specifics. And if they share an image with you, don't text/send that image out to your contacts. It can be rather upsetting when they find out to know that things about their life/recovery have been shared without their permission.

Suggestion #6. Offer to do their laundry
If you are really wanting to offer support and help while they are in hospital, offering to wash their dirty clothes can be a huge help. But you need to be prepared that some of those articles of clothing might be dirty or soiled. It might be embarrassing for the patient to accept you washing their clothes especially their delicates, and it is important that you make them feel comfortable and not embarrassed about the state of their clothes, as they might be a little anxious about handing over their PJ pants that became soiled after a bag leak.

If you do end up washing their clothes, and if their clothes are rather dirty and soiled or stained, it is not your place to tell others in a gossip sort of way as it would be humiliating and tarnish any chances of the person asking/accepting help again.

While these are just a few suggestions I know the list could be longer. So if you have a suggestion that you think would help others comment below and let me know. I would love to hear your ideas of what makes you feel more supported when in hospital.

Posted by: Talya AT 05:57 pm   |  Permalink   |  0 Comments  |  Email
Thursday, December 17 2015

November (like October) involved not as much chemo as I would have liked and meant more time spent in hospital.

NOV 3RD, 2015: Had chemo today, was the first day in 3 weeks that I have had it was also Melbourne Cup day. I felt rather seedy the following day(s) and rather tired. Even the blandest of foods I couldn't stomach and wasn't until a few days after chemo that I actually ate something. I actually ended up being admitted into hospital on the 5th of November with fevers and suspected infection somewhere. I had a CT scan which showed my tumours haven't shrunk but they hadn't grown much.

Was a little traumatic on the Monday(9th) when a doctor came to tell me that I had a new tumour and I spent hours crying and hyperventilating, only for my other doctors to come and tell me it was a tumour I already knew about.

After that incident, I asked to be transferred to the Private Hospital and had a few days of rest to let me recoup.

NOV 10TH, 2015: No chemo today as I was in hospital


Me before chemo - lunch at Mangrove Jacks

NOV 17TH, 2015: Had chemo today, was the first day in a fortnight I had chemo. My mum picked me up early and we went and had lunch by Mangrove Jacks, it is this really lovely restaurant situated on Coffs Creek and is majestic.. such a tranquil spot! Was rather funny at lunch there were these seagulls in the water being chased by big fish, the poor birds were paddling their little legs as fast as they could to get away!

 My port bled today for the first time in ever, which had me excited that maybe all the issues of my port were behind me. I did wake this morning to a bunch of sweet texts from my sister (14) and brother (18) wishing me best of luck for chemo. I am loving the family support recently, it is reasurring knowing you're not along in this huge battle.

I started some new medication today, my oncologist prescribed me lorazapam which I am to take the night before chemo, the night after I have had chemo, and the day after I have chemo which will hopefully help keep my body calm and works well with my other medications he gives me during chemo like ondanzatron.

I had fevers a couple of days after chemo, but with some panadol I was able to manage the fevers at home, but have been sufferring bad with kidney pain and migraines.

NOV 24TH, 2015: Didn't have chemo today, they tried to use my port but it wouldn't even flush saline through! I went and had a portagram done, which is a scan of your port to see if it is working and turns out the thing is blocked! I have to come back on Thursday (26th) and have a procedure done to unblock it.

I decided to wear my storm troopers headwrap to chemo today along with my Dior lippy I got from Look Good Feel Better workshop (loving the pink!). I got a lovely compliment from the volunteer today, she said "you always look pretty with your hair wraps". A compliment from a stranger always makes you feel better.


Me all ready for chemo in my storm troopers head wrap

NOV 26TH, 2015: Today I am having my port unblocked. It is a surgery that requires the doctor to make an incision into my groin and going in through the artery he can feed a cable up past my heart and chest and to my neck where my port is and unblock it. The surgery went well and was a success and the port started bleeding back. The surgeon also was able to reposition the port so it wasn't sitting so high up.

I woke up half way through the procedure and it was rather bizarre just laying there not able to feel anything but know that you are being poked and prodded.

Once I was awake, I had to stay in bed for an hour to reduce any complications post surgery and then I was allowed to sit in a chair, have a sandwhich and wait for a couple of hours before I could be discharged.

The incision site was rather sore for a couple of days and chemo will be scheduled for next Tuesday (1st Dec).

Even though it is month two of this chemo saga, it is only something like 4 days (cycles) I have had of chemo because of all the interruptions such as surgeries, port not working and being in hospital. Here's hoping things go a bit more smoothly next month... I am a bit anxious about Christmas and hope to be able to spend it with my family.

 
Posted by: Talya AT 01:41 am   |  Permalink   |  1 Comment  |  Email
Tuesday, November 17 2015

Recently, my 18 year old brother graduated from year 12 and in the lead up to his final year 12 exams I gave him a piece of advice that I wish someone had of told me when I was undergoing my HSC in 2008.

I told my brother that no matter what his final marks were, that they didn't dictate his future or his ability to succeed. I told him that I loved him and all I expect is that he do his best and be happy with how hard he worked.

I wished someone had of told me that I was worth something even if I didn't get that perfect 83 that I wanted... or that someone told me that I wasn't a failure because I didn't get that mark. I felt so much pressure to get the perfect grades and that if I didn't go to university my life wouldn't amount to much without that university degree and a huge debt.


Me in my senior years of school

While my HSC marks were great (lowest exam mark was a 79 for Extension History *cough* nerd *cough*) because of my grade my university admission mark was only a 55.5, which I only JUST scraped into uni for Nursing (which I had to cease studying due to health reasons) but I until recently have felt like a failure because I am 24 and have no solid career or university degree.

But it took me telling my brother that his life won't be over if he doesn't get into uni, to realise that my life was never over when I didn't get into the course I wanted or because I didn't finish that university degree.. instead I have had a pretty interesting life the last few years and I have done my best to grab life by the metaphorical balls and to make the most of it.

I am a big believer that when one door closes another door opens, and that opportunities exist everywhere you just have to be looking for them!

I always wanted to have a career in health helping people and I thought that it was because I could do so through nursing. But I have since learnt that I can achieve this through my blog and writings and that I want to be a social worker and counsellor. It was through my nursing studies that I realised I was more interested in the holistic picture and the social aspect of my studies and that I can make a difference in other ways. Then I started my blog when I needed to have my bowel removed and an ileostomy, when I couldn't find ANY resources pertaining to life of a young female with a stoma, and so began Feeling Ostomistic.

This wasn't the only opportunity I have found by chance.

I know I don't talk about it a lot, being a taboo subject and all... but I suffer from Borderline Personality Disorder and as my way of coping (in a healthy way) I turn to crafts and keeping my hands and in turn my mind busy so that I can distract myself... this had always been sufficient in helping me to cope. That was until I was diagnosed with FAP and dealing with my dad's terminal bowel cancer when I realised I needed something more dynamic.

So I turned my coping mechanisim of a creative outlet into a cottage enterprise Made With Love Cards And Crafts, where it quickly turned into a busy little handmade business that became respected not only around Australia but globally too (with products being sent to Ellen Degeneres!!). I had eventually gotten so many orders I had waiting lists and had to turn clients away as I just couldn't physically do all the work. But then my health got the better of me and 18 months ago I stopped taking on orders as it got too hard being in hospital. I sometimes do the occasional card for family or friends but haven't formally taken orders for a while...

But because I now had no creative outlet and was spending weeks and months in hospital, I quickly found myself feeling down and in a bad place mentally. I knew I had to find another creative outlet and venture that could be fulfilling of my creative needs, that was busy and kept me distracted, and also was mobile so that it could come to hospital with me and didn't require being made or supplies.

Then a lightbulb moment happened, and I decided to invest in myself and start Goding Consulting where I offered graphic design (logo, flyers, business cards) and assistance with setting up social media pages. This was a business that I had the skills for, and being entirely based on my computer meant it was 100% mobile and could be taken to hospital with me... 

In fact it was so mobile that it followed me to Sydney for 5 weeks during my hospital stay and RPA media called me "a hospital bed entrepreneur". I have taken a break since October 2015 to focus on my health more.

So 7 years on since my HSC my marks mean nothing to me and hasn't dictated the path I have created for myself.

My marks didn't dictate my self worth or my lack of future accomplishments, it just made me determined to look for my own opportunities and make the most of what life gives me.

So to all those students whom like my brother are awaiting their final marks, I hope that this message helps give you perspective that there is life after year 12 and there are plenty of paths you can take... just be mindful of the opportunities that present themselves as they might not always be obvious and will need to be found... but they are out there!

 
Posted by: Talya AT 12:26 am   |  Permalink   |  0 Comments  |  Email
Monday, November 16 2015

Hi and welcome to Chemo Diaries: My experience, which will be a monthly series of posts written like a diary about my experience as I undergo chemo. This is the first month post and is also for the month of October, 2015.

Thankfully there is heaps of information out there to help understand the type of cancer treatment you need and how it will effect you. I have found CanTeen have some great resources for helping me to understand what to expect from my cancer journey (even booklets on fertility after treatment). Other great places of information I have found are from the Cancer Council as well as the chemo education sessions I attended at my local cancer centre. 

As I read in the Canteen booklet "Your guide to dealing with cancer ages 16-24", chemotherapy (chemo) is one of the more commonly used methods to treat cancer and it works by using drugs called cytotoxics to kill or slow the growth of cancer cells. As explained in the booklet (and from my own experience) chemo also kills your good cells too, making you feel very sick, fatigued, and also why you lose your hair (I am yet to experience hair loss). I also experienced really painful mouth ulcers recently (was so bad I couldn't eat, read more about that below).

Initially I was planned on having monthly doses of Caelyx but after a severe (almost-died-reaction) to it my oncologists decided on weekly doses of Methotrexate and Vinblastine combination to try and shrink these tumours, and as my oncologist explained "to help give me relief to enjoy each day".

I didn't go into chemo with the expectation that one day I will be cured and tumour free, I know that isn't my reality and I don't want to have unrealistic expectations. But I just want my tumours to shrink enough so I can FINALLY be pain free and enjoy what is left of my short life. I have so much I want to still do (read about my happy list here) and I hope to be well enough one day to travel. 

My experience so far:
29.09.2015:
Met with surgeon to discuss portacath surgery. I had to drive down to Port Maquarie (roughly 3 hours south) as the surgeon here in Coffs wasn't available until the end of October and my chemo was to be started sooner rather than later. I really didn't want to have a PICC line to have chemo and I am so glad I advocated enough to let me go to Port for a consult and surgery as I got a Purple portacath. My doctor thought I was strange for being excited about a colour of a device implanted under my skin... but purple is my favourite colour and it made me feel so much more positive about the whole experience.

02.10.2015:
Today was the day that I had my surgery in Port Private Hospital (their sandwiches still don't beat Baringa Private at Coffs... in fact no where yet does) and the surgery went well. I was in a lot of pain and in pain for days afterwards but you can read all about my experience over on "Portacath and What to expect when you need one for chemo".

07.10.2015:
My first day of chemo, 5 days after my port was put in and I am feeling hopeful about this treatment. It was like it was a blessing and everything fell into place, it was like it was meant to be. There was something hopeful about this one bag (below) of chemo Caelyx that was worth $6000 AUD for the bag that made me think that this would work.

The day involved getting there early to start chemo, then I had to have my port accessed and blood taken. While waiting for the blood tests to come back (to make sure I was well enough to have chemo) I had some bags of fluids to keep me hydrated and a nice toasted sandwhich.

It was about 2PM when I had my first try of chemo, and beforehand I was warned that this chemo has side effects of a reaction (in rare cases) that results in feeling hot like you're on fire, sometimes pain in your back and heavy chest with inability to breathe. It was about 5 minutes (if that) into the infusion when I started feeling warm in my face, then it radiated to my whole body. I stayed calm and thought "this is okay, a little bit of heat never hurt anyone". Then it intensified around the same time that it felt like an elephant was sitting on my chest. My chest felt so heavy I couldn't breathe no matter how hard I was trying. Then the pain started in my back around my kidneys and was rather pulsing, it was so painful and then pain shot down the nerves in my legs and my whole body was going into spasms and my heart was racing.

By the point that my chest was heavy I had called the nurse over and they were frantically trying to stop the infusion. They called over the doctors who advised an ECG was needed and to give me anti-reaction meds to try and control the pain and slow down my heart rate.

It was then decided after an hour that we would try it again, but this time at a much slower rate, which the same symptoms (despite the anti reaction meds) started about a minute or two in.

08.10.15:
I spent the night before in hospital under observation after the reaction yesterday to ensure that I was okay and ready to try it again this morning. Except even with the anti reaction medications and slower rate of infusion (would have taken 6 hours to complete) I still reacted and realised that I am allergic to Liposomal Doxirubicin and that it is not the right chemo.

The doctors consulted with my Sydney oncologist who decided I would try the weekly over 52 weeks regime of Methotrexate and Vinblastine.

14.10.15:
Today was the day that I started the new chemo regime of Methotrexate and Vinblastine (a low dose weekly course of combination chemo that has had success in clinical trials). I was pretty nervous about starting a new chemo given how horrible the experience was last week when I reacted and could have died to Caelyx. The day started off getting there early to meet with the doctor and to have my bloods taken. While we waited, I was lucky to be in one of the rooms with a bed so while I had fluids infused through my port, I just napped. I got very little sleep the night before as I was too scared and anxious.

Due to the high toxicity of one of the drugs, when the Nurse has to manually push through the drug she has to sit there with me the entire time to monitor my port and make sure that it doesn't leak into my skin as it can cause nacrotic skin tissue like a chemical burn. She became my chemo buddy. I didn't feel any side effects and even felt so fine that I was able to drive home.

17.10.15:
I found an hour after chemo I started feeling the nausea and felt rather seedy like I was hungover, which I didn't feel like eating for days, for someone who loves food even the thought of it made me feel sick! I ended up feeling a bit sick all day with fevers then had a 39'C temperature, which I was told anything over 39'C means a trip to hospital. Turns out I had excoriated skin between my butt cheeks like big raw ulcers.

I spent the next 2 weeks in hospital and my chemo (was to be on the 20th and 27th) were postponed as I needed all the healthy cells possible to heal my wounds. I had twice daily applications of zinc (sudocreme), Rectinol (creame for heamoroids it has a numbing agent in it) and another gel based cream that was also an anti fungal but had local antiseptic. The most horrible part of having raw skin was when it needed to be scrubbed clean and washed. It was excruciating and while I have a high pain threshold I was screaming and often in tears. It wasn't very pleasant. They think it was a combination of chemo and my immune system was down and it was the reason for this. But I lost all dignity when many people were looking at my bum and cleaning it and poking it... I felt so embarrassed that this happened even though it wasn't my fault. But the nursing staff were great and while I felt embarrassed they did good at making sure I was okay.

This concludes my first month of chemo experiences ranging from my portacath surgery to starting two different chemo regimes and as my husband said to me recently, "I know it is horrible right now, but the sad thing is you will get used to feeling like shit... just imagine when chemo is all over and you will look back and think 'It is good not to feel that crappy'. If anyone can do this, you can".

I love that he has so much faith in my strength, although I constantly wonder and feel like I am not strong enough to do this.... my husband is like my own personal cheerleader! I don't think I could have done this without his support...

One month down, just 11 more to go!


 

 

 
Posted by: Talya AT 04:32 pm   |  Permalink   |  0 Comments  |  Email
Tuesday, November 10 2015

One thing that I am learning more and more each day as I progress through my chemo regime is just how much fatigue I have and how little energy. I am realising the need and importance for energy conservation and working on improving this for myself and hoping to share a blog post to help others too, afterall being chronically sick is exhausting.

Another thing that is exhausting is dealing with the emotional side of living daily with a chronic and terminal illness.

I realised yesterday, that in order to help conserve my energy and to prevent just how exhausted I am feeling today, that I should try and keep my mental breakdowns and panic attacks to a mininum or at least save it for the times that need it most, or best yet to wait until you have all the facts and a confirmation from your primary care physicians before freaking out.

This is what happened yesterday and the lead up to it.

Friday 06.11.15:
I went for a CT scan of my abdomen for a suspected fluid leaking into my abdominal wall and possibly the reason I had fevers and have been in hospital since Wednesday night. The scan was to also compare my tumour growth and check on the tumours to ensure that those hadn't yet turned septic and were the cause for worry.

The doctors confirmed that either there is a new tumour to the right of my stoma or that it is a cavity that is filling with fluid from my bowel or stomach and needs to be drained. Surgery was discussed but they decided to do an ultrasound on Monday to get a better view of what is going on.

Monday 09.11.15 1PM AEST:
I went for an ultrasound and the radiologist came in and said "that isn't a fluid cavity that is a tumour and without knowing this patients prior history I suspect it is a desmoid tumour". He turns to me and says "I am sorry you have a large tumour 10cm x 11cm".

I left there trying to hold it together as I was hoping it was a fluid cavity as that could be fixed with a surgery and drain, but a new tumour I couldn't handle.

So I broke down I couldn't stop crying and I was freaking out that there is a tumour somehow in between two other tumours and my stoma and where on earth is it fitting and is my stoma going to be okay, will I be okay, does this mean my death is looming nearer than I expected? These were all questions running through my mind then the biggest freak out of all was "I can't die just yet, I am too young".

I was howling (literally) uncontrollably and couldn't stop crying. I needed support I needed someone to tell me I was going to be okay... I called my husband at work and my mum who came and sat with me and brought me a drink and some lollies.

Monday 09.11.15 3PM:
My doctors came in, first my bowel surgeon who was talking to me about my tumours and explaining how sometimes they can die from the inside out when chemo is involved and that the centre is liquid and can become septic.

Then my oncologist and his team came by and he asked what had me so upset. When I told him he replied "I am so sorry for all this upset caused but someone told you the wrong information, you don't have a 'new' tumour you know it is there it is the big ball under your skin at the top of the stoma". I was all confused and said "Wait whaaaaaat?"

He replied "it is new on the scans you've had here at the hospital, but not new on the scans that you had back in August which is why I asked your husband to bring them in, I am so sorry someone told you you had a new 4th tumour but you still only have the three."


My tumour the "new" one. To the left of the image is my belly button, my stomach normally would end there but that is how big the tumour is.. see it resembles a ball!

I felt like the biggest dickhead ever and felt horrible for causing my family further heartache, but my heart was broken as I was told the wrong misinformed information and I hadn't yet seen my primary doctors to have it all confirmed.

They saw how fragile I am and have transferred me over to the private hospital for a few days respite to help me recover, regain my strength and collect my thoughts again.

Lesson learnt... don't freak out until you know all the facts

To my followers that were supporting me yesterday during my freakout, I am so appreciative of your help and sorry for an undue stresses caused for worrying about me... It was not a cry for attention I legit thought I was on the brink of dying (so scary).

Much love to you all x

Tell me in the comments below, a time where you freaked out before knowing all the facts

 
Posted by: Talya AT 10:57 am   |  Permalink   |  0 Comments  |  Email
Monday, October 05 2015

NB: This is a Sponsored Post

For most of the families or couples I know, live on a budget and it is often paycheck to paycheck. I know this is the case for my husband and I aswell.

It wasn't until my husband lost his job in 2012 (when his employer went into administration) and at the same time my hours had been reduced from 24 contracted hours weekly to 4 (unless I picked up extra shifts), so I had to learn quick smart a) how to budget, b) how to make the money we have from each pay count and c) how can we manage when there is more money going out than coming in.

Up until this point, I had never created a budget. But once I had, I saw how much EASIER it made managing the bills, and three years on I am still finding the success it has helped us to better manage our finances.

I wrote a list (table) of all the money that we had coming in, and all of the money that needs to go out on bills and also allowing for food. Because of how tight things were I didn't allow for things like shopping, movies, going out for dinner or date nights as these were 'luxury expenses'.

My expense list looked something like this: (NB: this is an example only)

Then there were the yearly bills like car registration and CTP Greenslip (so roughly $1000 annually) which I put $20 a week away into a seperate savings account so that we had the money there when we needed to register the car. 

Up until the last month, I have been paying the same amount in bills as I had done 3 years ago. But it got me thinking that IF I reviewed my current bills what potential savings could I find?

Reviewing the mobile phone plans:
The first thing I reviewed was my current mobile plan. I thought years ago (when I worked at a local Telstra Business Centre) that the best plans for value were the ones for business customers, so the last however many years I have been paying a lot when I was barely getting any value.  And being in the country, I needed to have the best mobile coverage so it kept me loyal to telstra.

Turns out, if I went back to being on a consumer only plan I can be paying less a month with unlimited calls, unlimited SMS and a whopping 6 GB of data (considering I went over my previous 1GB allocation each month, this was exciting). I also was given 25GB as bonus data during my first month and I could also get an iPhone 6 for less than I was paying previously!

With this new plan, it also meant that if my husband transferred his phone account into my name, and if it were on the same bill as mine he could drop down to a $50 a month plan with 2.5GB of data (when added to my data we now have 8.5GB to use each month) and he gets $1000 in call allowance too.
We saved $50 a month in my husband's plan alone, and $60 a month in mine so $110 a month in total!

Reviewing your bank accounts:
I have found before from my own personal experience and from working in a bank, that it is good practice to review your loans and bank accounts at least annually, as circumstances change it is important to ensure that the loan and products are still working the best that they can for you especially as the interest rates are always changing.

I recently reviewed our Personal Loan we took out when we purchased our car, and found that the current interest rate we have is almost 3% lower than the current rate offered.

However, while we haven't saved any money from reviewing the loan we are in the process of hoping to buy our first house and have plans to incorporate that loan into our mortgage, which will mean we save $135 each week

It is also important to give your loans a health check to make sure that you are still covered with the protection side of things, not only does it offer peace of mind if you were to become sick, to lose your job or pass away, that if you're eligible for the protection it is worthwhile having. I know I had to use the insurance side of my loan and credit card when my husband lost his job and the payments were covered for 3 months. Going off of our loan, that was a saving of $135 a week or $1620 in total that was then able to be used towards other bills.

Credit Cards and Balance transfers:
I know how hard it can be to fall into the trap of having a large credit card debt, and no matter how much you're paying in repayments each month it still feels like you're being killed by the bank's interest rates!

I have learnt over the years how to save money on your credit card, and more importantly how to make your credit card work for the best for you. (keeping in mind that advice is general based on my own experience and you should always consult financial advice and read the Product disclosure statements)


With the Credit cards, sometimes it can feel like you can never get in front of the repayments, and when times have been tough I had a balance transfer of our credit card and it helped us save so much money! The benefit of the balance transfers is usually the banks offer a promotional period say 12 months where they won't charge you interest on balance transfers during that period.

We did this on our bankwest credit card for $5000, and we were able to budget and pay it off in a whole year! We set a minimum of $50 a week payment and if there were weeks where we had the $100, we would pay that amount.

By doing a bank transfer we were able to save ourselves paying 19% interest p.a on the credit card, and it means that we now saved ourselves approx. $915 p.a in interest!

Reviewing our Home insurance:
A few months back, I was speaking to a friend about "adult things" which included talking about insurances and stuff. She told me that she was paying almost HALF of what I am paying, and she was the same age just different suburbs.

I always put down the fact that our insurances cost more than my friends was that it apparantly "floods" and a "high crime area", so I never thought anything more of it.

So I started to shop around and get quotes, and while I found a few that were happy to offer a cheaper rate it came at the risk of "due to the known risk of flooding, we will insure your property excluding flood". Knowing my luck (since I am not THE MOST LUCKIEST person that it would flood).

So I went back to our existing insurer whom we were currently paying $3000 a year in premiums, and said we were looking at going elsewhere unless they could help us with a better quote.

They came back and said as we were only renting we could have just contents insurance. Imagine my surprise when it came in at only $612 a year! That was less than $60 a month and less than $15 a week! We were paying $250 a month before or $60 a week!
So we saved ourselves over $2300 a year!!

Reviewing our Private Health Insurance:
I know in the past when things have been a little tight, my private health insurance (along with my car and home insurance) were some of the expenditures I was willing to let go. Not because I felt I didn't NEED them, because I did but because it was an expense I couldn't justify between meaning if we have insurance for this week or if we ate food this week.

There was no doubt the struggle was (and for many) real, and I know how important it is for your money to be spent in the best way possible for yourself and your family.

One thing I recently learnt, was that I needed to review my Private Health Insurance more regularly than every 5 years!

I have been with my current provider for going on 5 years, and I thought I was happy with the cover being top hospital and no extra's and that I thought at $70 a fortnight I was getting a great deal.. I was happy until a couple of recent circumstances where 1) they would only cover my chemotherapy IF the drug was on the PBS, and 2) they no longer cover aneasthetics and I had a $1000 bill from the aneathetists for putting in my port. After speaking with the aneathetists secretary she explained that my health fund WAS the only fund they have to charge to the client.

So I was on a mission and enquired through Health Insurance comparison with the type of cover I have now and what I pay, and wanted to find out if there were comparative policies that:
1. covered aneathetiscs
2. was top hospital cover and covered surgeries
3. Had a partnership with the hospitals I frequent
4. Included ambulance cover

The consultant was SO helpful and talked me through my existing policy and comparing policies that were better.

He came back with a plan through AHM that was $3 less a fortnight, included extras like optical/dental/chiro/physio/remedial massage. Or if I wanted just the extras for my husband it was only an extra $10 a fortnight of what I am paying now!

Not only has Health Insurance Comparison helped me to save a lot of money such as $1000 aneathetists bill for 1 hour for admissions I needed it... and if it were based on my surgeries this year it could be over $20,000 a year it helps me to save! PLUS the rebates with extras like dental and optical too!

Hot tip: If you are done having children and no longer require having pregnancy or birth related inclusions, remove these from your policy and you will already be saving!

Thank you Health Insurance Comparison for such a seamless process to help compare the right health insurances for myself, and for helping me to save money on future surgeries. Don't forget to compare, save and go in the draw to win a year's health insurance for free!

So while you might feel loyalty to a particular company, you also need to feel loyal to your wallets and if you can shop around and find a better deal on other areas of your financial spending (power/gas/phone/internet/loans) you can afford to go on that nice holiday, or better yet buy that pair of shoes you WANT but probably really don't need...

or better yet... do what I am doing and using all of the savings and money you would otherwise have spent on bills towards purchasing your first home!

Thank you for reading my 5 top things to review when you're living on a budget to help save yourself a lot of moolah!

Posted by: Talya AT 06:18 am   |  Permalink   |  0 Comments  |  Email
Monday, October 05 2015

NB: This is a sponsored post

Sometimes in life, things happen that can be unexpected and often out of our control. But if we are prepared and have a contingency plan in place, it can help us to navigate through those difficult times with a bit more ease.

A contingency plan, is a plan that is designed to be implemented during a future event or circumstance. A contingency plan is also sometimes referred to as a back up plan or a risk management plan.

In my life, I have several of these risk management plans that I have shared with those that it most affects, and in each of these plans it explains in detail the steps that need to be taken.

Some contingency plans you might have (or need) in your life may include:

1. A will
This is probably (in my honest opinion) one of THE.MOST.IMPORTANT  risk management plans you can have in place. A will not only explains your wishes for your belongings and assets, but also can be important if you have young children to detail whom you wish to care for them in your absence.

If you have a blog or an online business (digital assests), there is also now an added clause that allows you to explain what is to happen to these when you die. You may wish to have your social media accounts closed, or request to have these left open as a memorial; or in my case I have specific instructions regarding my blog such as the hosting is to be continued to be paid and my site is to be continued to remain active for a resource that my younger sisters or anyone needing a safe place to turn to, can still do so. I even have a blog post (unpublished) and content that is to be updated to my site when I do pass away, so that others know that there won't necessarily be someone to answer any queries directly.

But your will should be updated every 2-5 years, as life happens and circumstances change, it is important that these are reflected in your will.

2. A funeral plan
You might have specific instructions in your will on where you want to be buried or cremated, or how you wish to pay for your funeral, or you might have been super prepared and met with a funeral home and have your funeral already pre-paid and planned out so that when you did pass away your family were able to grieve and be there for each other as opposed to making funeral arrangements.

I know that talking about your funeral wishes can be rather morbid, personal, upsetting and confronting to our family and friends, but it might help you feel at ease when times are tough and you are battling some serious health obstacles that you know your wishes are known.

For me, I know this is something I have done, and it was really hard being only 24, but the reality that I am faced with is one that is uncertain and I know when the going gets tough that this is a plan that might need to be actioned.

I have told my husband (and have it in writing and in my will) that I am to donate my body to science due to my rare disease and progression of said disease so that they can use my body and tumours to study and hopefully I can be part of a cure moving forward. I wish for my remains that aren't needed to be cremated, and for a joyful ceremony to be conducted at the botanical gardens where everyone is to wear bright and happy colours, and where it will be a celebration (a memorial service as you will) rather than a saddened atmosphere.... after all, I am a happy and bubbly person!

Up until I got sick, I had always wanted to be an organ donor. But knowing now that my organs and body parts wouldn't be able to be used by another I decided instead to donate my body to the organisations studying my disease and making a cure.

3. How you will pay your mortgage and bills if you were to lose your job?
When you take out a loan, credit card or mortgage you will be asked if you wish to take up loan protection. A lot of people are reluctant as they see it as an additional expense, and in truth we think that our jobs are secure and we are safe.

The reality is that you can never be too safe or secure in a job, and from my own personal experience it is something I realised was important to have in place.

My husband and I had always had protection on our loans in case we got sick or lost our jobs and was arranged through our loan provider. We had this for one of our car loan. Then in early 2012, I found ourselves applying for a quick fix finance loan for $15k to consolidate a couple of credit cards and a loan I had to take out to pay for my colonoscopy (which was $5k). 

My husband and I thought we were safe in our jobs, he had been working for a national company for 5 years and I working for a bank for the past 18 months. We were on really good incomes and planned to only have this loan for a couple of months so we could pay it in one loan and have a bit more breathing room. Because we only planned on having it temporarily we declined the loan protection.. our interest rate was 40% so we knew it needed to be paid quick smart.

Three days later, I was told my contracted hours were being reduced from 24 to 4 a week due to the bank doing a massive job cull and reshuffle and there wasn't the hours there.... it was okay, I knew we would be fine as we still had my husband's job...

The next day we got a phone call saying his employer had gone into administration and that they were closing in a month.

HOLY CRAP!  We now had $15k of debt that wasn't covered and we had no idea how we could make the repayments at 40% interest... we regretted the decision 4 days earlier to decline that loan protection.

Lesson learnt, never be unprepared again! I have since made sure that our loans, credit cards are covered and that my husband has income protection through his life insurance, which our friends over at Life Insurance Comparison can also help with!

4. What were to happen if you were no longer able to care for yourself and you needed to move into a residential facility or home?
I know we often don't like to think of what will happen when we get older, or what were to happen if we were to become permantly incapacitated, but this is a plan we should certainly talk to our family about and express our wishes while we still can.

While we might want to always stay living our life out in the home we love surrounded by family, this might not always be as easy as we wish. If there is round-the-clock medical care we need this can become rather expensive to organise to happen in your home and it might be easier on ourselves, our family and our carers if we were to live in a residential facility where we had the help and support we need.

It is also important to consider the safety aspect, will this be safer for me as a long term plan? And the finance side of things needs to be discussed to, whether you can afford it or how you plan on paying it. This could be something you incorporate into your retirement plan to accomodate for additional later-in-life medical costs.

5. How will you or your family survive if you became sick and unable to work or if you unexpectedly passed away?
I decided it was best to leave the most important contingency plan for last, which is of course, talking about our life insurance.

We protect our homes in the event of flood/theft or fire, and we protect our cars in the event of a crash, but surprisingly we often don't think about insuring number #1 (ourselves).  I know I thought of insuring my husband before I decided to insure myself, which by the point I enquired I was 19, recently diagnosed with FAP and was told that if I "got to 40 without cancer and had a total colectomy, I could then be insured".

I always assumed that life insurance was only of benefit when we died to help pay for things like our mortgage or help support our families.

But DID YOU KNOW that you can access insurance if you were to become sick or disabled? Well it can! Our friends over at Life Insurance Comparison, helped to explain in a guest post for us how Life insurance can help you while you're alive and when you become ill or disabled. I really reccommend having a read, as I know I (and a lot of my readers) found it rather valuable and learnt something new about the importance of insurance and how it can help them!

This post was sponsored by:

 

Posted by: Talya AT 12:53 am   |  Permalink   |  0 Comments  |  Email
Saturday, October 03 2015


Today is World Ostomy Day, a day celebrated worldwide through a social campaign "Many stories, One voice" and using the hashtag #MyOstomyStory.

I first joined the ostomate club back in May 8th 2013 after a 6+ hour operation to remove my large bowel, most of my rectum and to have my permanent ileostomy formed. It was probably one of the hardest decisions I have had to make, I was only 21 when I was told my bowel was showing early signs of turning cancerous and that I only had mere months to have it removed before it had fully turned and spread, which by the point of the surgery I had just turned 22 (read my story here).

While it was hard to go into my surgery excited (or OSTOMISTIC as I put it) as I didn't know what life as a young person (especially a female) would mean after I had an ostomy, but little did I know it was one of the best decisions I could have made.

I am aware that there are many reasons people get a stoma and while these aren't always planned surgeries and can be done in an emergency situation, or that there are some that are permanent and some that are temporary, I think it is important that we celebrate ourselves and our ostomies, as I know without mine I wouldn't be here today. And for that I am eternally grateful.

So in celebration of World Ostomy Day, and for those who have or are considering having one, here are my 20 pieces of ostomy advice I have for you. If you are unsure of what a stoma/ostomy is, you can read about it here in one of my earlier posts!

Stoma tips and life-hacks:
#1. Keep Hydrated
This might be something you hear a lot, but it is so important when you have an ostomy (and even when you don't) that you keep your body hydrated at all times, especially in summer. But when you have an ostomy you are at greater risks of dehydration and dehydration can also cause fatigue. I have also been told by my stomal therapy nurses to drink an electrolyte sports drink at least once a day to help replace the salts and minerals that my body is losing. I drink a 1 litre drink of this a day plus a couple of litres of water. But I know when my body is feeling dehydrated (and especially when my output is more watery I get tired, really shakey and have no energy.
Read: my tips on avoiding a watery output

#2. Your boobs become a valuable asset
An important thing to remember when doing an ostomy bag change is that in order to get the most out of the bag and to prevent leaks you need to a) have a good seal and b) you need your bag to be sticky... so whenever I do a bag change the first thing I do is put the bag I intend to use tucked under one breast, while the seal/mouldable ring (I use coloplast mouldable rings) is placed under my other boob. I sit there for at least 5 minutes before starting the back change process so that it has time to heat the glue. Reason I use my breasts is that my stomal therapy nurse in our first consult told me "placing under your boobs is one of the warmest parts of your body and makes things more stickier". If you don't have boobs you can utilise, read the next tip.

#3. Invest in a hair dryer
In all honesty, the very first time I bought a hair dryer in all my life was the first day I was home after being in hospital from my bowel surgery, I remember sitting on the toilet naked and crying as I was about to do my 10th bag change for the day, I was sore, my skin was sore and I was like "f#$% this, I can't do this anymore". My husband kept asking "what can I do to help" and as it was middle of winter and cold I couldn't produce enough body heat to keep my bags sticking... so my husband had the best lightbulb moment ever and ran over to the supermarket and purchased the most decent looking hair dryer they had (from memory was about $20) and he plugged it in and sat there heating the bags up... they became so much more sticky! I now take my hair dryer everywhere with me!

Other tips to help make your bag more stickier can be read here!

#4. You'll find many uses for your hair dryer
Apart from your hair dryer being used to make your bags more stickier, I also use mine to help dry my bag after a shower especially when I don't need to do a bag change. I am one of those people that can get a few days out of each bag so I just sit there for about 5 minutes after my shower drying my stoma bag and stomach. Also, it is great to use in winter to quickly warm up your body after a shower, I don't know about you but where I'm from it gets so cold in winter!

#5. Avoid foods that cause blockages
One thing you really don't want when you have a stoma is a blockage, trust me when it is not only painful but is rather scary. There is a list of foods that you should avoid because they don't break down or they often would in people who have all their bowel. I remember when I first had my stoma I had a craving for Hawaiian pizza (Ham and pineapple) and imagine my horror when out come pieces of pineapple whole! Same goes for peas, corn, nuts, coconut and some foods like celery and tomato also don't break down. Your stomal therapy nurse can provide you a list of foods to avoid.

#6. Avoid foods that cause winds
Foods, when you have a stoma can a bit of a nuisence whether it is foods that cause blockages (mentioned in #5) or these can cause wind. Wind, when spoken about when you have a stoma is referring to your stoma farting.. and sometimes it can be rather noisy (when you don't want to be noticed for the girl with the farting tummy), or cause your bag to fill up quickly with air (sometimes so much your bag literally pops off or explodes). Although, sometimes stoma farts can't be avoided and just happen. But my husband is so sweet, when we are in a meeting and my stomach farts and I start turning red he just makes noises or coughs to draw the attention away... what a sweet heart!

#7. Avoid drinks that cause winds
Foods aren't the only reason for wind or fart production coming from your stoma bag, what you drink also plays a big part. Foods that are fizzy and gassy or alcohol can also cause wind. I also find after I have had aneasthetic from a gastroscopy, ERCP or from other surgeries that my bag fills up with more gas too.

When out and about:
#8. Take your stoma supplies kit everywhere you go when you leave the house
This should become part of your routine, I have two stoma kits one I keep in my bathroom and the other is a smaller and discreet version I keep in my handbag. Trust me when I say that when you don't have your kit on you, you'll probably experience a bag leak. I know my worst bag leaks in public have been when I didn't have a kit on me and it was horribly noticable through my clothes. Was a horrible and traumatising experience and one that brings me to my next piece of advice...

#9. Always pack a spare change of clothes
I find if I am going to a conference where I will be gone from 8am to 6pm or when I was doing studying on campus at Uni (and can even apply for work situations), have a big day of shopping planned or spending a good part of 16 hours travelling to Sydney to see specialists and driving home, I always take a change of clothes. I at least pack one change of pants, a shirt and a pair of undies. Thankfully, I am a bit of a crazed nut when it comes to my clothes and I have 4 pairs of the same pair of jeggings and they are the most comfortable versatile pairs of pants I have ever owned, so thankfully it just looks like I change my shirt.

#10. Jeggings or any elasticised pants will become a staple in your wardrobe
I wear jeggings... there I ADMIT IT... and I am not ashamed! Thankfully my jeggings actually look like jeans and are almost as thick so you can't really tell, but I found it so uncomfortable to wear pants with zippers and buttons, as I found they always sat RIGHT.ON.MY.STOMA and when my bag would start filling up either the bag would explode and I would be left in an embarrased heap, or  it was rather uncomfortable. I love my jeggings that they are elasticised waist and can wear them up higher over my stoma and much more comfortable.

#11. Baby wipes aren't only used for babies
I know what you choose to clean your stoma comes down to personal preference, I know some prefer to buy some chux sheets and cut up to use as a rag for cleaning your stoma, or others use wet toilet paper.. but personally I prefer baby wipes for a number of reasons. Firstly, they come in handy travel packs that can fit in your handbag; secondly, they are always wet and if you are out and about and don't always have access to water it is handy; thirdly, I am sensitive to how things feel on my skin and find baby wipes are much smoother where I find cloth rags are rough and scratchy. I use huggies shea butter baby wipes and have for years. I also sometimes (when at home) sit the wipes in a small container of warm water to remove a lot of the chemicals and to water it down. But most of the time I don't bother.

Stoma kit advice:
#12. Add scented garbage bags into your stoma kit
For the first couple of bag changes I was relying on using plasic shoppings bags to dispose of my stoma bag, and my husband wanted to try something when shopping one day and found these scented garbage bags that are small in size, and not only do these help to mask the smell of the contents of the bag when doing a bag change, but if you happen to be somewhere that there isn't an immediate place to dispose of in the bin and need to carry it in your handbag, it is discreet and you won't smell it. Just double bag it to ensure one layer doesn't pierce and the contents goes through your handbag.

#13. Invest in some sort of room spray
Have you ever emptied your bag when you're in a public rest room, and you feel so embarrassed by the smell coming from your cubicle that you hide and hope no one realises it was you when you emerge from the change room? Well if you have, you're not alone. So many times I was left feeling embarrassed that things were a bit too smelly and spraying toilet spray (if you're carrying a whole can around in your handbag) can not only be bulky but just as noisy... so I have the perfect pocket sized solution for you that was given to me as a Christmas gift last year, it is a thing called Room spray by scentsy and I have it in my handbag and in my stoma kit and promise there is no more embarrassing moments in public toilets! You can read my review of it here!

#14. Always have at least 3 of each item on hand in your portable kit
I have developed a bit of a rule when it comes to my stoma kit that I have with me in my handbag, is that I have at least 3 quantity of each item in my supply kit (excluding my scissors, stoma powder). So I have three stoma bags (in case I have more than 1 leak or accidentaly pierce a hole when cutting out the hole), I have a handful of adhesive wipes and barrier wipes, a handful of the brava elastic tape (banana wafers I call them), 3 mouldable rings and at least 6 of the scented garbage bags (in case I need to double bag, or a bag gets a hole in it). Here is a guide and checklist I wrote for when packing for a holiday with a stoma!

Storing your supplies at home:
#15. Have a cupboard within a reach of your toilet
I learnt very early on, how much of a hassle it is when you need to do a bag change and you're stuck sitting on the toilet home alone and can't reach your supplies. I was lucky that I have a large bathroom which could perfectly accomodate a cabinet that fits in between the toilet and the shower, which I have filled with stoma supplies. It also acts as a bench/table for me to lay out my supplies I need to use too. And to the untrained eye, guests just think it is a towel cupboard! But I do know not everyone can have a bathroom that is as accomodating, so you could look into getting a portable trolley with shelf space underneath and a flat table like top and you can wheel it into the bathroom when you need to use it, and when it's not in use you can store in the linen cupboard or wardrobe etc.

#16. Never wait until you're on the last handful or box of supplies before you re-order
Postage can always be unpredictable here in Australia, so I find it is always best to have a buffer when you need to re-order your next order of supplies. I find once you are almost at the last box to order your supplies that way you can allow for any delays in postage arriving, or if you have any unexpected bag leaks. 

Mental preparedness and a stoma:
#17. When doing a bag change play some music
I know sometimes I get rather flustered or overwhelmed when doing a bag change and especially found this was the case when I first had my surgery. I now have it as a part of my bag change routine that I have some music playing in the background which helps me to feel calm. Others might find that by playing a movie or tv show on their ipad/TV can be a pleasant distraction too.

#18. For me, my life truly began when I had my stoma surgery
I know that it is very easy to fall into the trap of thinking pre-surgery that your life is over and that you won't be able to live a normal life once you have a stoma. I know I was guilty of thinking this way, but my life honestly was given back to me when I had my stoma surgery. Before my stoma, I would be house bound because I had irritable bowel and always needed a toilet near by but also that going to the toilet and eating was a very, very painful experience. I can now enjoy going places, going out to dinner eating foods I once couldn't eat and I have more freedom now. I have control back over my life and my bowel was no longer defining me or what I did in my life. Although there is the chance of bag leaks when out and about and there is more involved when you go 'number 2' these are manageble and long term think of the how much life you were missing out on!

#19. If he truly loves you, having a stoma won't matter
I know sex and a stoma are two taboo subjects, but just because you have a stoma doesn't mean you won't ever be intimate with your partner or husband ever again, and if he loves you he can look past the stoma and not make you feel insecure about having one. Just because you have a stoma doesn't mean you're no longer considered sexy or attractive, you just now have a new adaptation to your body. If you feel insecure or conscious about your stoma during intimacy, there is lacy bag covers you can wear or put a towel over your stomach. But no one if they truly love you will make you feel ashamed for having something that saved your life.

#20. You can still swim when you have a stoma
When I first had my surgery, I was a bit saddened during summer when everyone was going to the beach and enjoying the water or swimming in the pools, I was worried because I had a stoma that this wasn't for me anymore. I was worried the bag would fall off during swimming and would be humiliating, but when I eventually realised I can go swimming I was so much more happier. While I admire those who can rock a stoma and a bikini, I don't quite have the confidence yet to do so (or have a bikini body) but I feel more safer and secure wearing a one piece that has a lining in the stomach area and I feel this gives me more confidence when swimming and isn't a noticable giveaway that I have a stoma. I also love doing water aerobics and find it is much enjoyable for me having a stoma than exercising and sweating and my bag becoming unstuck. 

[end of advice]

While, I have so many more tips to share than just 20, I thought that 20 would be enough for now and to help you get some tips at your fingertips. But if you have some other stoma hacks or tips you wish to share, feel free to comment these below!

Posted by: Talya AT 09:32 pm   |  Permalink   |  0 Comments  |  Email
Sunday, August 30 2015

There is something about being chronically sick and told you're essentially "a ticking time bomb"  that really helps to put things into perspective.

When I was first diagnosed with FAP in 2010 (I was 19), I was told that I wouldn't be at risk of bowel cancer until I was 30. It made me realise just how much I wanted to do and achieve while I still could.

Then in late 2012, I found out the polyps in my bowel were turning cancerous and that I only had a matter of months to act and have all of my bowel removed. You would think that this would cause more of an alarm and prompt me to want to do a lot more with my life, but as the bowel cancer risk was removed, I naively thought that my risk of cancer would be removed and I could get on with my life..

But boy was I wrong.... My cancer journey didn't end there. In fact, I was diagnosed with thyroid cancer earlier this year too which thankfully was successfully removed in April while it was still in the stage I phase, remained contained within my thyroid meaning it hadn't reached nearby neck tissues.

It wasn't until a year ago that I had this drive and motivation to want to do everything I have ever only imagined in day dreams, was re-ignited and has been a continual driving force (and distraction this past year). It made me realise that while I was content with my life and my accomplishments so far, that I didn't feel entirely happy, and I knew that there was more I wanted to do and see.

So I decided I would write a happy list, as opposed to a bucket list for one of two reasons:
1. it sounded more positive than saying bucket list
and
2. it would be a list of things I want to do, that would truly make me happy within myself.

What was the changing point for me, was when I was in hospital for pancreatitis when the doctors did a CT scan that revealed there was this new and rather large tumour and suspected it was a desmoid tumour. These types of tumours are really rare, but they can also be rather deadly and life threatening and these 'aggressive fibromatosis' can cause death.

To put it bluntly, when I was first diagnosed with FAP my doctors said that they "hope that you don't develop desmoid tumours... if it isn't the cancer from the FAP that kills you the desmoid tumours will".

So while I am only 24, I have come to terms with the fact that this condition will kill me, I just don't know when. Some doctors mentioned up to a year if the tumours continue to grow at the rate they currently are (thankfully last lost of treatment is keeping them at bay and no new growth) but others have said 5-6 years.


So it helps me to have a list of things that I want to do, that will make me happy but also offer my life more meaning. 
My 5 reasons for having a happy list as opposed to a bucket list is:

#1. Happiness
It was a no brainer that happiness be one of my reasons for wanting to have a happy list, as the word happy was in the title of it. Now, I'm not saying I'm not happy at the moment because I am but I want to be more happy.

For me a big part of my happiness has always been results driven and I am more happier when I feel like I have accomplished something, which brings me to my next point.

#2. Sense of accomplishment and fulfilment (purpose/direction)
My husband always seems to be getting cranky at my when I mention how I feel like I haven't accomplished much and want to have more of a purpose or direction of where my life is headed. The comparison thief plays a big part of this, but no matter what I do or try to do I still feel that I need to do more and often meaning bigger things.

And this has only gotten worse over the last year as there is still so much that I want to see and do and I don't know how to achieve it all. I want to die knowing that I made the most out of every day and I want others to see me as this amazing and successful person as opposed to "that girl that was really sick".

I want to be known as more than what my illness defines me as, as I am so much more than that girl that's really sick. But I also don't want my family or friends to say I was a lousy person because sometimes I was too unwell to make it to social events.

#3. Is more empowering and motivating
I find having a happy list helps me to feel more positive and optimistic about my future plans, as opposed to being depressed at the thought that I want to do things because I could die.

For me it is more empowering to see it as a positive of things I have dreamed of, and motivating to help me want to do it. I find other's are more accepting of my happy list of things to see and do as opposed to it being my bucket list.. which brings me to #4.

#4. Offers inclusion of others
Through being more positive about things I want to do and especially things that involve others (like my family and friends), I find they are wanting to join in and get excited about the activity or goal at hand, as opposed to being depressed that I am only wanting to do these things as I might die.

I also find that through having a happy list and being more positively about things that I hope this helps my family to remember the times shared and make memories with me and link these memories with happiness and fulfilment rather than sadness and loss.

#5. Works as a distraction
If I said it was easy knowing you have a chronic illness that can kill you is easy, I would be telling a major fib... and that isn't what my blog is about! Some days it can be extremely hard when I have new progression or diagnosis' or travelling the 16 hour round trip to see specialists in Sydney. Some days it can be too much and I easily feel overwhelmed, and not wanting to get out of bed to face the world.

But I find that my happy list serves as a distraction tool, and while I don't think I can ever completely forget the reality I am faced with every day, I can use my energy to focus more on the things that are important to me and that I want to see/do... and for me keeping busy is the ultimate distraction and one of the many coping mechanism I have.

Things on my happy list include (in no particular order):
☐ Being tumour free
Have confidence to be the real me and show others who I am
☐ Finishing a counselling course
Making a difference to someone's life
☐ Writing a book and telling my story
☐ Come up with a kick-ass start up idea
Win an award
☑ Have my product in a national newspaper
​☐ Travel around Australia
Have my own house
☐ Have a Japanese garden where I can escape my reality
☑ Get a kitten preferably a Ragdoll
☐ Have an office where I can be inspired to write and create
☑ Go on an all expenses paid business trip for my blogging
Do motivational speaking
☐ Be an entrepreneur and make at least $100k in one year
☐ Become a successful blogger, so successful and influential that I would be given a car (if not free, at a huge discount)
To have a family and my husband to have a child of his own 
☑ Have a celebrity receive a product you made (Ellen received one of my Santa Keys last year!!)
☐ Being there for my siblings when they need me
☐ Reaching 1 million views on my Made With Love-Cards and Crafts blog (currently at 390k)
☐ Reaching 500k views on Feeling Ostomistic (currently at 285k)
☐ Have my own magazine column
Start an online magazine
☐ Start a Not For Profit
☐ Do something newsworthy
☐ Lose a lot of weight, and be healthy enough to start exercising
☐ Become rich enough to have someone cook for me and drive me around
☐ Finish a university degree
☐ Go on a cruise
☐ Travel the Great Ocean Road (Melbourne- Adelaide)
☐ Travel to Kangaroo Island
☐ Vist Tasmania
☐ Visit the Pink lake in WA
☐ See a sunset from the West Coast
☐ Visit Coober Pedy

☐ Learn photography
☐ Meet Ellen Degeneres
☐ Have my own TV show making crafts... be the next Martha Stewart (without being in prison)
☐ Write for a big blog

I know some of these may sound over the top, and I admit they are but if you're going to dream you might as well dream big as well as being realistic... now if I could just find the next multimillion dollar idea, I will be well on my way to taking over the world (not quite literal).

So tell me, do you have a happy list and what is one thing you want to mark off your list? Feel free to comment below.

 
Posted by: Talya AT 05:50 am   |  Permalink   |  1 Comment  |  Email
Monday, August 24 2015

I recently had a brain MRI as I was experiencing recurring symptoms I had when I was first diagnosed was arachnoid cysts on my brain in 2009, so as the symptoms had returned (the headaches, hearing loss and vision issues) I thought it was best to have a repeat MRI. The scan confirmed that the cysts that had been fenstrated (drained) back in 2009 had returned and were as big as they were then, and after consulting with my brain surgeon we agreed to monitor it for 6 months as this is the least of my conerns right now health wise.


My most recent MRI scan showing my brain (yes I do have one) and the cysts

So I had a reader message me after my scan, sharing that she too was going to have an MRI but she was feeling a bit concerned as she didn't know what to expect as she hadn't had one before, so she asked if I could share my experience and any tips to help her prepare.

What to expect when you need an MRI scan
& how to prepare for one in 10 easy steps!

What is an MRI machine?
MRI stands for Magnetic Resonance Imaging, and according to Better Health Channel it is a scan used for diagnostic imaging that uses a magnetic field and radio waves to help view what is going on inside your body, but is more commonly used to look at soft tissues (such as organs, and muscles) that don't show up on an X-ray.

An MRI also takes high resolution images of soft tissues and the picture is more clearer than a CT or X-ray.

How does the proceedure work?
You will be asked to lay on the scanning bed, which moves and slides you into the MRI tunnell. Sometimes (depending on what part of the body is being scanned) they will strap down or put a cage around the area so you don't move that part of your body, reason being if you move at all the images become blurry and you may be asked to re-do your scan. When I had my brain MRI they put this cage/mask over my head and secured it to the table so I couldn't move.

Some scans can take up to an hour to complete, and the tunnel you slide into is very small and it is normal to feel a bit claustraphobic as well, but there is an intercom inside the tunnel and you're given a button to press if you need to speak to the imaging technician.

The machine is also very loud (can be compared to that of a jackhammer), so you may be given ear plugs or ear muffs to wear. Some machines also have headphones that play music.

How much does a scan cost?
As the MRI is a specialised pieces of equipment it is also very expensive to run. Depending on the reason for the scan or where you're getting the scan done at can influence the price of the scan. Medicare (is the system we have here in Australia) bulk bills in some cases, but most of the time there could be an out of pocket expense. But it is best to ask when making your appointment what costs will be involved. One MRI I had in 2009 cost $685, so it is best to check up front.

Some places may also allow you to pay the gap and charge the rest to medicare, but as I mentioned before it is best to check with medicare and the imaging place what costs will be involved.

Can anyone have an MRI?
While most people can have an MRI, it is always best to check with your doctor or the radiologist if you have any concerns. While it is considered a safe procedure, some people may not be able to have the scan if they have a pacemaker or any implant, any metal in their body (that can't be removed) or people who are pregnant. It is always best to check with your doctor though if you have any concerns.

How to prepare for an MRI in 10 steps:
#1. You will be asked to not have anything to eat or drink for at least 4-5 hours BEFORE the scan, but this can vary depending on the part of the body being scanned or the time of day. It is important that you follow the fasting guidelines to ensure the best result of your scan.
#2. Allow at least an hour for the scan, and allow for additional time involved if they are running behind schedule or if you have paperwork you need to fill out.
#3. Remove all piercings and metal from your body, if you have any internal implants or metal objects it is best to tell someone immediately BEFORE having your scan.
#4. You may be asked to remove all clothing and put on a hospital gown, this is incase there is any metal on your clothing such as your bra, studs on your jean pockets or a zipper etc.
NB: Wear comfortable loose fitting clothing that doesn't have any metal to avoid having to strip down into a hospital gown, but not all practices will let you wear your own clothing either, so always ask. But I always wear tracksuit pants and a loose t-shirt when I have any scans.
#5. Turn your mobile off or to aeroplane mode before your scan
#6. If you find yourself feeling claustraphobic in confined spaces, it is best to tell someone before your scan. They can sometimes offer a sedative or anti-anxiety medication to help you relax. Otherwise if you know how to meditate and if it helps relieve your anxiety you can practice that.
#7. If you have an iPod or phone with music on it they may be able to play this for you and you can hear it through your headphones. The machine can be really loud with a lot of banging and clicks (sounds like a jackhammer).
#8. If you don't wish to listen to music and want to try to meditate or have a nap bring a set of ear plugs.
#9. Pack some panadol if you're prone to headaches which are brought on by loud noises to offer some relief after the scan (consult with your doctor first if panadol is right for you)
#10. It can be quite cold in the scan room, so bring a pair of socks to wear on your feet to help keep you warm. You may be offered a blanket too.

ONE thing I like to do after my scan, is to go for a nice lunch or coffee with a friend. Not only does it help ease the anxiety I feel while waiting for my results to come back (can be a couple of days) it also is nice after having had starved all day prior to the scan.

These tips are based on my own experience of having multiple scans, and I am sharing to help you in the lead up to your own scan. The scan isn't invasive and no need to be scared of the scan. But it is perfectly normal to be anxious about the results, I know I usually am (especially when waiting to review my tumours).

As always, if you're needing to ask a question you can always connect with me through email or via facebook. Please remember I am no Doctor, so it is always best to consult with your physician as your first point of contact. I am only sharing my experiences on this topic.

You may also like the following topics:
* PET scan and what is involved
* CT scan and what is involved
* Thyroid biopsy and what to expect
* Breast Mammogram, biopsies and what to expect
 

p.s If you find my tips and blog helpful, please take a moment to vote for my blog in the Heritage savvy bloggers competition. With your help I (and if I win) I am starting a new support website (and app) to help other young people who live daily with a chronic illness. By taking a moment to vote not only will you be helping me to help others but I am confident that this website will change the lives of many (and if you're in Australia you could win $100). Please remember to confirm your vote via clicking the email they send (check your junk/spam too).

 
Posted by: Talya AT 06:48 am   |  Permalink   |  0 Comments  |  Email
Friday, August 21 2015

NB: This post is an entry for the Heritage Bank Savvy Blogger Awards  please click on the icon at the bottom of this post, to vote for Feeling Ostomistic and you could be in the running to win $100 and help me to win a share of $11k which I want to use towards my chemo (and medical costs) coming up. Would mean a lot if you could support me.

Without a doubt you might have heard about the extremely over-the-top wedding in Sydney recently, if you haven't you may have been living under a rock... in that case I will summarise it for you. This super rich couple had a wedding which they closed down entire streets in Sydney causing traffic chaos, and their wedding car fleet involved cars worth a collective of $50 million dollars, as well as hiring helicopters, sea planes... but to have a nice wedding do you NEED to spend millions?


My dad and I at my wedding

I remember when I was planning my wedding years ago I wanted to have the big white wedding, and I was panicking at the cost it was all coming to (something like $10k+) and so was my husband well then fiance... and very quickly the wedding planning was becomming more about pleasing everyone else and catering to their needs rather than creating a day that was perfect for my husband and I.

Because of how much our wedding was going to cost we were planning it for 2 (almost 3) years away. But then something happened (rather fate as you might call it) and in the middle of June my then fiance (who struggles with large numbers of crowds and public performance) was rather overwhelmed with the wedding guest numbers and gave me an ultimatum....

He said either we get married in a month at the courthouse or we don't get married at all!

So I said that I will change our plans and organise a wedding in 4 weeks on a limited budget as long as we have a nice honeymoon and I get to have a nice 21st 2 years later and it be the wedding reception I had of hoped for....

Let's clear one thing up... there was no way I was getting married in the courthouse and I knew I had to plan a nice low-key wedding that was still memorable, that my husband would agree too and decided to make it as nice as I possibly could on a limited budget.... 

All in all, our wedding cost us just under $2500 and that was including everything!

Here are 10 ways I helped to save money on my wedding in under 4 weeks of planning, and I don't regret it at all!

#1 the dress = $220
My top tip when it comes to shopping for your wedding is to head to the stocktake sales in either June or after Christmas, as you will find some amazing bargains! It was lucky that all the stocktake sales had just started when I started planning my wedding in June something like 5 weeks before I was planning on getting married.

I knew it would be almost impossible to find the perfect traditional wedding dress in my size and budget within 4 weeks, and I knew I also wanted to be different to the norm as well.

So my wedding dress was this beautiful purple formal dress that just happened to be on special for $220 and was a perfect fit. Purple is my favourite colour too, so I knew it is a dress I would be happy in and happy to wear again.

#2 the tux = $250 (including jacket, pants, tie, vest & shirt)
We were lucky that we found the perfect suit on sale (thank you stocktake clearance) and imagine my delight when the entire combo including the tie, vest and shirt came in at just $250! The tux alone was normally $500 odd.

My husband has since worn the suit to weddings, funerals and job interviews.... and if you too saw him in the vest and suit you'd hire him too (bow chicka wow wow) [He would kill me if he knew I said that...truth...]

#3 the wedding bands = $300 for both
When we walked past the Micheal Hill Jewellery store, and Russ decided he wanted to check out wedding bands (and saw they were on special) and decided to buy them to put them away, it was the event that sparked his sudden need to get married and realised that the longer time went on the more he was getting anxious and couldn't do it.

So we found the rings were on stocktake clearance my wedding band was $200 (including a gorgeous row of diamonds) and his simple 'boring' band (as I say) was around $100. Was an absolute steal!

#4 the celebrant and photographer = $1200
How I found our celebrant and photographer was by an absolute fluke. I was at work (at the time as a telco department manager in a now closed electronics department store) when a customer came in needing a new phone contract. I happened to sell him the top of the range iPhone 3s (was THE.BEST.THING.AT.THE.TIME) and we got chatting about his business.

He told me he was a wedding photographer and organised elopement packages or small wedding packages which included the celebrant and photography during the ceremony and 1.5 hours afterwards (and all the photos printed in an album and on a disc too).

I went to the lunch room and found Russ (we happened to be working together at the time... he a computer salesman and I in the next department over selling phones and iPods.... no we didn't start dating when as co-workers.. and yes I got the job there after we were engaged) and told him I might have found us our celebrant and photographer. Russ came downstairs from his lunch break and the guy was still in the store (now needing to buy a new laptop) and we got chatting more about what he could offer us.

He said he had packages starting at $700 but for what we were wanting he could offer a small wedding ceremony and photography package for $1200. This was strictly 25 guests, the set up of the ceremony, the photography (including disc and images printed), the celebrant and filing of paperwork and any other legal fees.

While this meant we could only invite a small number of people to the ceremony (and I know some were a bit peeved about it) but it was all we could afford and had the most important people to us there. However, as we were having the reception/after party back where all my family lived (2 hours south) everyone was invited and most people understood (having had been married themselves knowing too well the cost involved).

#5 writing my own wedding ceremony = Priceless
I wanted our wedding ceremony to be really special, and to also help save on the costs of the celebrant I decided that I would write our entire ceremony (except for the legal blurb the celebrant has to state and a couple of readings), But otherwise the rest I wrote and composed myself (with of course the help from Russ).

#6 2 tier wedding cake = $200
When I went around getting prices of cakes from different bakers most were in excess of $600+ which just wasn't in my budget. I thought I would test the waters a bit and ask how much it was to have a 2 tier cake made (and left off the word wedding) and surprisingly it was much cheaper.


Our wedding cake

#7 bouquet of flowers = $30
Similarly, I found flowers (just like cakes) suddenly had a surcharge applied when you mentioned the word wedding. All I wanted was a nice bunch of white lillies with some nice white ribbon tied around them. These were $30 when the word wedding wasn't mentioned, and when it was it became $150.

I also thought it would be pretty yet simple if my sisters held one pink gerbra (with ribbon tied around) instead of a bouquet. I also gave them bubbles to blow through the ceremony so they wouldn't be bored and run a muck (they were afterall only 7 and 8). And a lot of the photos with the bubbles turned out beautifully!


My flowers

#8 Flower girl dresses = $50 each
Just like our attire we found the girls flower girl dresses reduced on the stocktake clearance racks for just $50 each! They needed a little adjustment to be made to the bodice, but otherwise were a perfect fit.

#9 Food at the reception (free for us)
We decided to have our reception/after party at a local pub that was a familiar spot for my family. I wanted it to be informal and inclusive of everyone, and as the pub did $5 feeds, I asked everyone instead of buying us a gift to insted pay for their own meals and drinks. My dad and pop ended up putting a tab on the bar as a wedding gift, which everyone (including us) were appreciative of. Although, it didn't last terribly long (even though it was only covering beer, soft drink and wine).

#10 Venue hire (free)
When I was looking into planning my wedding I was searching for places that were FREE or very low cost involved for both the ceremony and the reception. For the ceremony we got married on a headland overlooking the beach (and had whales breaching just off the headland- was magical) and didn't need to pay a fee (although check with your council as some require a permit). And then for the reception, we just hired out the pub as a private function and although I offered, they didn't accept money for the venue hire.

I didn't have it decorated much, just some tablecloths, DIY balloon centrepieces and the cake table decorated. But you can find some amazing DIY wedding decor on pinterest or local selling sites.

More ways to save on your wedding..
* I did my own DIY invitations (which were rather basic) before I had even dreamed of starting my own handmade invitations business (making my wedding invites seemed to have sparked an interest in handmade invitations for me).
* Hair, I visited my hairdresser a week prior to have my hair colouring and trim/tidy up done along with a hair trial. Best to get the colouring done at least a week before and not the day before so you have time to prepare in case you don't like it.
* Makeup, sometimes you can find students at TAFE who are studying and needing experience who can offer their services at an affordable rate. Otherwise, you can always reach out to your friends or family who are familiar with makeup and ask for their help.
* Wear in your shoes before your wedding day, nothing worse than walking around with sore blistery heels and feet.

While it may seem like my wedding was rushed (honestly had 4-5 weeks to plan it) I am so glad that I got married when I did rather than waiting until 2012 like we initially planned on getting married, as this meant my dad was able to walk me down the aisle and be there on my wedding day (not long after our wedding he was diagnosed with terminal Bowel Cancer, and passed away in March 2012).... I now have memories I will forever cherish from that day and conversations had (that still make me laugh). I don't regret have a cheaper low-key wedding, and after 5 years of wedded bliss this year, only proves that you don't need an expensive wedding to make a happy marriage.... also saving costs where possible meant we could go on a nice honeymoon to Hamilton Island for a week.

One last tip... A wise person told me before my wedding that I needed to savour every moment of the day and take it all in, as the day goes rather quickly especially when you're excited, and you don't want to miss out.... they also went on to say that if you make it back to your hotel suite and you are too tired (or drunk) to consumate your marriage, that it is okay and not to feel pressured that you HAVE to do it on that night... there is always the next morning and you have your whole marriage to worry about that (hehe).

Hope some of my tips shared can help you on your wedding planning, if you have a tip for others feel free to share it in the comments below.

 

 
Posted by: Talya AT 10:56 am   |  Permalink   |  2 Comments  |  Email
Saturday, July 25 2015

I have been thinking a lot lately about my life and especially my health and what I have gone through and learnt. One thing that keeps popping into my mind is just how much being sick affects every aspect of my life!

When you think about it, being chronically sick interferes with your physical, mental, social, spiritual and financial health. I know my bank account has taken a massive hit since I had to stop working almost 3 years ago and with the never ending medical expenses (scans, blood tests, doctors fees, surgical fees, hospital excess fees). I also know people stop inviting me places because I often cancel last minute because I am stuck in bed, in pain and unable to drive (and have no one to drive for me).

I know a lot of people only associate health with just being physical, but I wanted to bring the attention to our health being holistic and incorporates the several key aspects of our life.


Here are some ways we can make small, manageable changes to our health:

PHYSICAL:
Try to do at least 10 minutes of walking 2 times a day, start off small and gradually build it up. They suggest doing 30 mins of walking a day. But start off doing what you can handle. 

My hubby won a free fitbit through his work, and he has been using it for almost a year now and loves it. He wears it everyday and he isn't happy until it celebrates that he has reached 10,000 steps. Even on his days off he will offer to walk home from the shops so he can get his count up. It has been a good way for him to improve his health as he is competitive and it makes him want to work more (and in the end earn more sales and bring home more commissions)

MENTAL:
Find a hobby, especially one that is reliant on you using your hands to build something not only will it act as a distraction but it will also help you to feel accomplished by building something or making something... something you can say "I made that".

When I was first diagnosed with FAP I wasn't coping AT ALL. I was trying to come to terms with my dad being terminally ill and the stress of what was in store for me was too much. I quickly found myself in a downward spiral and started doing creative things to help me cope. I always had loved scrapbooking and craft, so I started doing card making classes. I realised there wasn't any handmade invitations out there so I started a handmade business which kept me so busy! Within days my husband had commented on how much I have changed and seem happier and it has been my saving point the last 4 years. I know when I am in hospital for lengthy stays I feel myself getting a bit depressed and once I get home and start making things again I feel myself feeling more content and happier. For me it works!

SPIRITUAL:
Spiritual health isn't just solely based around your religious or cultural practices or beliefs, spiritual also involves your own personal beliefs and values. If you are someone who believes in Karma and the importance of doing a good deed, set yourself a challenge to do one selfless act at least once a week where you are doing something good for someone else. It doesn't mean necessarily footing someone's entire grocery bill but could be something as little as sending a card and gift voucher anonymously to someone you know who isn't coping well with life lately, or walking up to a stranger in the street and giving them flowers. Or asking the cashier to use the change from your groceries towards the next person's.

There are so many ways you can perform selfless acts, and it will make you feel better about yourself by bringing jo and happiness to others.

SOCIAL:
It is important when you're chronically sick to have a support network of not only family but of friends too. I know it can be hard as someone who is an introvert and suffers social anxiety on top of being sick to suggest to make changes. But think of it as making progress towards improving this aspect of your health rather than the word "change" which can seem daunting.

Some things you could consider is if you're not well enough to go out to a restaurant, organise a little lunch or morning/afternoon tea with your friend and catch up over coffee and cake. You could even join a group of people with like minded interests or hobbies, or volunteer somewhere.

Or if you're anything like me and enjoy writing things down and helping others, you could always start a blog. It is a great way to connect, network and meet new people, while predominately online there could be blogger meet ups in your area or workshops you could attend or conferences.

I am heading off to Problogger and there is an estimated 700 attendees so I have 100 promo handouts for my blog and will challenge myself the task of talking to and introducing myself to 100 people over the course of 3 days... as someone who is an introvert and suffers from social anxiety I AM SHITTING MYSELF!! (gotta laugh that it is quite literal... stoma humour)

FINANCIAL:
There are some people that can save really well, then there are others (like me) who have been using shopping as a way to deal with my emotions (bad, BAD habit to have). So instead of calling it saving, change your mind set of creating financial targets. If you work out a small or achievable amount you could save each week, after 6 months or a year you will have more money than you realised.

Even saving as little as $10 a week will give you little over $520 for a year (plus whatever interest you made) or as little as $20 could be an extra $1000. Do that for 5 years and you have earnt yourself over $5000 (plus interest, I suck at maths so don't ask me to work out compound interest). To help remind you to transfer the money, either do it once your pay comes in and you pay your bills or write on a calendar $10 on each Wednesday to remind yourself to transfer it. If you can afford $50 a week to save, then you will have $2600 (plus interest) each year!

We can all do little changes to start improving our holistic health, and hope that I have given you something to think about on how you can start 'progressing' towards better health.

P.S if you have any suggestions or ways that you improve your health through small changes, please leave a comment and share ideas for others reading.

 
Posted by: Talya AT 08:58 am   |  Permalink   |  Email
Friday, July 24 2015

Today marks 5 years since I walked down the aisle and said "I do" to my incredible husband.

We have gone through so much these past 5 years, and when they say marriage is for sickness and in health they weren't kidding!

We have often been told that our love story is incredible and a true testament to how much you're willing to do when someone you love is sick or ill.

I met Russell (my spunky hubby) when I was 18 and this crazy and bubbly first year nursing student at uni. I needed a new laptop after my laptop decided to go for a bit of a swim during the March '09 Coffs Harbour floods... so I desperately needed a laptop to keep up with uni work.

I headed off to my local Wow sight and sound electronics superstore (which has since closed) and was on a mission to find a new laptop. I was greeted by this rather adorable and spunky computer salesman (and I could tell he was a bit nerdy too) so I pulled out all my charm and wit and tried to pretend to understand whatever computer mumbo jumbo he was going on about... it was so hard to focus when his eyes were so dreamy!

I was a poor uni student who didn't have contents insurance or much savings, so I needed to apply for finance for a laptop.

I spent the next couple of hours chatting with this salesman while we were doing the application, and he claims I was hitting on him (I say otherwise) but when I was rejected for finance I was about to head home and decided I would ask for his number but just like GE and flexirent, he too rejected me.

A couple of months passed and I had received a scholarship from uni and had some savings in place to attempt to buy the laptop again. So I tried to wait until a couple of months had passed before I returned to the store in the hopes he wouldn't remember me.

I had even gone to the troubles of dying my hair a red/purple colour and cutting it really short.

So the day came in July (3 months later) and I wondered into the computer department when I noticed the hot salesman. I tried to avoid his attention (I still felt the shame) and pretended to be busy looking at computers when he walked up and approached me. He smiled and said "It's Talya isn't it" and I felt my face turning red like a beetroot and in my head I was cursing with a few "f#$%, f$#%, f$#%"'s and really wished he hadn't of remembered me.

But I felt my face returning to normal and told him I was ready to buy that $2000 laptop I wanted and would need a new printer, MS office word and some extended warranty (I was every computer salesman's dream customer.. one that knew what they wanted). He started to get it all organised when he said to me "I am sorry for not getting your number that day, I have regretted it everyday since and just hoped I would see you again and not be shy to get your number".

So we got talking and he asked what I was up to since I saw him last, and I told him how I had been sick and waiting to have brain surgery in a month's time.

His response was "What superpower are your getting?" which was pretty typical for a nerd, and made me smile. I left with his number and a new computer and sat by my phone waiting for 5.30pm to come so I could call him.

We chatted for ages on the phone and organised to have a date the following sunday and chatted every night leading up to our date. It was like we had known each other forever, and I really felt that I could be myself and could trust him. There was that instant connection.

My friends gave me a bit of a hard time over the age gap. I was 18 and he was 29, but never has it felt like there was this gap between our ages. Sometimes I think he is a kid with the way he acts and carries on... but they do say it takes a long time for males to mature LOL.

So we went on our first date and we started dating and he really helped me come to terms with my upcoming brain surgery, which I was so scared about (and it was also going to be filmed for the RPA TV show).

Russ was there for me through my brain surgeries even though he barely knew me, and my dad really admired that in him and the way he took care of me when I was sick. So I was almost in the second month out of three for my hospital stay (I devleoped golden staph/MRSA in fection after one of my surgeries so was 2 month treatment to rid me of the infection) when he proposed.

We got married the following July, and everyone thought I was being married because I was pregnant (which I wasn't and yet to have a child) or that it wouldn't last because I am too young or that I was rushing into it.... what many failed to grasp was when you are faced with life or death you soon realise how crucial it is to make the most of everyday you are alive... I was doing just that, living life at its fullest and not missing out on any opportunities.

Our wedding was a beautiful, intimate and relaxing day. Aside from the usual family drama that comes with a wedding, the day was better than expected. The weather held off, and we got married on a headland and saw whales breaching in the background, it was truly magical!

Best of all the wedding (including our outfits) was under $2500! I wanted to save as much on the wedding so we could have the honeymoon we dreamed of!

Not long after our wedding I started a traineeship at a bank and learnt of my dad's terminal bowel cancer and that it was a rare inherited type known as FAP. I started screening and testing which was confirmed I too inherited this disease and started meeting with an array of doctors and specialists who wanted me to fastrack having a family (preferably via IVF to diagnose any embryo's affected with the gene).

It was hard being a newlywed and finding out that your dreams of having a family and that you're at a 80% risk of bowel cancer and prone to other tumours and cancers and will require 6 monthly surveilence.

It was a lot for us to come to terms with, but we got through it all and Russ was there for me.

2012

Dad lost his battle in March 2012, 3 days after my 21st birthday and Russ supported me through my grief.

Wow went into administration and Russ was made redundant in April, and he struggled to find work. I was able to pick up extra shifts but things were so difficult. I was finding my health especially my bowels deteriorating and I was in constant pain, but I had to keep working or we would have lost everything. I lived off of our credit cards to help make ends meat, as I was now needing to work enough to cover 2 incomes.

In September Russ thankfully got offered a job with a well established company coming to Coffs and it meant I could reduce my hours so I could finally go to Doctors appointments and catch up on colonoscopies.

After a few months on the waiting list to see a gynocologist, he booked me in for investigative surgery the following week as he discovered I had a large mass on one of my ovaries.

So I had a colonoscopy on Oct 8th and a laporoscopy, cystoscopy and hysteroscopy done on the 10th and it was discovered I had severe stage IV endometriosis with my surgeon saying "it was one of the worst cases he has seen in his career and in someone who was 21". I had a 15cm round enometrioma removed off of my left ovary along with the lining of the ovary, a couple of 7cm masses removed and a hundred 1 and 2cm sites removed as well.

Because of the extent of the damage I was placed in a medically induced menopause for 6 months and it was horrible. I was so sick and it took me a few months to recover from the surgery (sex was a no go, just hurt too much and still does) and I made the decision to stop working so I could recover and focus on my health. Russ was great about it and was so supportive and did everything to help me get better.

The week I finished up working (was Nov 24th) I found out the results from my colonoscopy, which showed the polyps in my bowel and rectum were in the early stages of becoming cancerous and I had an estimated 6 months to have my bowel removed before the cancer fully turned and spread. I was told I would need a permanent ileostomy.

2013

The start of 2013 involved a lot of appointments with stoma therapy nurses and surgeons to ensure I understood what was going to happen. I was really struggling to come to terms with the idea of having an ileostomy and knowing it will be a lifelong decision was rather daunting.

Heck, all I wanted to do was be a normal 21 year old and I felt that my health was taking a lot of normalcy away from me.

So the surgery was scheduled for April, which was cancelled just as they were about to put me under and rescheduled a month later at the main hospital (for safety reasons) so it meant another month of trying to process it.

Russ was incredible through all this, he came to all my appointments and even asked to be shown what to do to help me do a bag change and wanted to be involved. He was there when I had my surgery and helped me to get out of bed and walk around (which was so painful) but he also would come and visit me every day for the month I was in hospital even after he had been working all day and would take home clothes to wash and bring me new clothes the following day, he would even help me to shower.

And no matter what has happened, he has never seen me as gross or disgusting because I have a stoma and continues to be attacted to me and love me unconditionally.

In 2013, I also developed acute recurrent pancreatitis which meant a lot more visits in hospital

2014

This year wasn't as intense with as many surgeries but still had a lot of pancreatitis visits to hospital.

It was also discovered in July that year that there was a large abdominal mass, and was sent to Sydney for investigations and ordered to have PET scans, which after reviewing the October PET scan the doctors wanted me to repeat it in Feb 2015, so it was months of waiting to see what these tumours were.

2015

In Feb' I had the repeat PET scan which showed there was activity on my thyroid, breast, multiple tumours in my abdomen as well as the bigger tumour now completly blocking my left kidney. This meant being admitted into hospital for further tests which went over a period of 5 weeks. I was in hospital some 800kms away from home, and it was really hard for Russ being home working and he wasn't coping trying to come to terms with everything. But in true stubborn male form, he wouldn't talk about it all either.

He helped me through my thyroid surgery and I wasn't very well and he helped me to shower and take care of me. When he arrived the morning after my surgery I was still sedated with a ventillator attached and tubes hooked up everywhere, he didn't cope well seeing me how I was and when I saw how I looked even I was worried.

I just found out I will be needing brain surgery again, and still waiting to see if my desmoid tumours will shrink or if I will need chemo, but it has made all the difference knowing that no matter what happens my husband will be there to help me.

He works so hard to help support us while I haven't been able to return to the workforce and he is great at putting up with my mood swings, some days I am coping but other days I am a mess, and he doesn't judge me. He always knows the right things to say!

But in the 5 years I have been married and been chronically sick, I have learnt 5 very important things:

#1
it is okay to ask for help. This is something I have struggled with my entire life and I felt I needed to be so independant that I wouldn't ever ask for help. I realised that if I don't ask for help that others especially my husband wouldn't realise I need help.

#2
it is okay to be dependant on someone else. I always felt that I had to be my own person and felt so guilty when I first stopped working as I wasn't contributing and became financially dependant on my husband. But not just financially but emotionally and pysically too. There have been times where in all honesty I was too sick to shower, wash my hair or even wipe my own bum. But he has never made me feel pathetic or to be embarrased of needing his help. Heck he has even had to feed me after I had brain surgery. I don't feel there is anything left to be embarrased about around him, and he just takes everything about me in his stride and loves me no matter what.

#3
it is important to have things that you do on your own and don't always have to do everything together as a way to help you cope with illness and being sick. My husband loves his gaming and computers whereas I love my craft and being creative. We know to respect each other's space when we need to deal with things and I think it is a big part of us being able to get along so well (we have never had a fight).

#4
to have an intimate marriage doesn't necessarily mean it has to be intimate in a sexual way. I am thankful that I have an amazing husband who understands that while sex is enjoyable for him, it isn't something I enjoy doing due to the endometriosis and all the scar tissue. But he has never made me to feel bad for not wanting to have sex, and never forces this on me. Even before I got sick our relationship wasn't based solely on sex. We communicate a lot and have shared intimate moments through him taking care of me in times of sickness. Showing intimacy isn't just about sex.

#5
Any medical or life altering decisions is something that should be done together and not something that you have to only take on the burden on your own. When you get married everything you do becomes a team effort, and there have been times where I struggled to make a decision on my own and really valued Russ' input. I was really against having the surgery to have my stoma and collectomy and I didn't want the surgery but he insisted and told me he would rather have me alive than be dead. 

A huge thank you to my husband for helping me through the last 5 years, without you I don't believe I would have made it. You're my hero x

 
Posted by: Talya AT 01:00 am   |  Permalink   |  1 Comment  |  Email
Friday, July 17 2015

NB: This post contains the word 'shit'. If you'll be offended by the use of the word, please stop reading now.

Sometimes when things go horribly wrong, all you can do to keep yourself from breaking down and crying is to just laugh... this was a scenario I found myself in this week... and after all 'shit happens'.. in my case quite literally!

You see, I was invited to Melbourne this week for an exclusive bloggers workshop and was amongst the company of some of my blogging idols and heroes (even being in the same room let along being invited to the same event was pretty huge for me personally).

But what is one thing that can go wrong when you have a stoma... and something that you only ever think you're being overly paranoid about when in public?

........

........

If you guessed having a huge bag leak then you guessed correctly!

I was halfway through a 4 hour meeting/workshop when I quickly ducked off to the toilets only to realise that my bag had started leaking and was causing a bit of a mess. Of course the toilets were all the way down stairs and my stoma kit was all the way up in a seperate room (where everyone's bags and luggage was kept).. so I was sitting in the disabled toilets panicking thinking "shit, what the heck am I going to do?".

See I knew if I was in the toilet too long it might look suscpicious, or it might be even more suspicious if I ran upstairs grabbed my stoma kit, ran back downstairs and spent the next however long doing a bag change... so I realised where it was leaking and the bottom part of the bag that you close up was no longer sticking closed, so I emptied it, gave it a bit of a clean with some handtowels and ran upstairs.

I then did a bit of a McGyver trick and got the elastic tape (or I refer to them as banana wafers) and taped the bag closed.

I returned to my meeting and resumed my seat until the intermission (when everyone was mingling over wine, cheese and appetisers) I raced downstairs with my stoma kit and DID THE QUICKEST BAG CHANGE IN MY HISTORY OF HAVING A STOMA. No joke. It was the quickest change I have ever done, and thankfully no one noticed I had gone to the toilet for a second time in only a short period of time.

But it made me realise that I could have been better prepared and in hindsight I realise how, and I hope to share 5 ways to be better organised for when shit strikes...

5 ways to be better organised for a meeting/work when your stoma bag leaks

#1. Inside your handbag, briefcase or laptop bag have a seperate clutch or toiletry bag, that is dicreet and doesn't look like a toiletry bag and inside have enough for 1 bag change. So when you need to duck off to the toilet just grab your clutch and own how discreet you're being. Even if you don't have to take care of a bag leak, at least then you are prepared for when the moment strikes and you need to transform into a stoma bag changing Ninja!

#2. Always get to your meeting earlier than expected to so that you can allow time to go to the toilet and empty your bag, as nothing is more embarrassing than trying to excuse yourself from the meeting and as your bag is full and you apply pressure standing up your bag more or less bursts and it can be rather embarrassing (this has happened to me before when I was studying on campus).

#3. Always have a change of clothes or underwear with you. This one can be a bit hard if you only have a small handbag, thankfully I have a larger tote style handbag that is big enough to fit a change of clothes in. But if you have a locker at work or school/uni always have a spare change of clothes on hand, so that you are ready for when you have a bag leak and you don't have to go home in poo stained clothes, or sit in soiled clothes for the rest of your shift.
TIP: If the toilet in your bathroom at work has a cabinet under the sink, leave your spare change of clothes wrapped up in a plastic bag or within an enviro bag so that you don't have to walk all the way out to your desk to retrieve your clothes, it can help you be more discreet. The same can go for places where your meeting or workshop is at, leave your stoma kit/change of clothes in the cupboard as a precaution. Just remember to collect it before you leave!

#4. Always carry some scented garbage bags in your handbag and stoma kit, so that if you have to dispose of your bag and there isn't any bins around and you have no choice but to carry your soiled stoma bag in your handbag until you can find a bin to dispose of it in.. at least it will help mask the smell a bit. Just soon as you find a bin, dump that shit (LITERALLY).

#5. If you have had to leave your meeting and people notice you have been gone for a length of time and start commenting (and rather then saying what really happened, unless you want to) just pull out the period card... no one especially men will ask more questions and your female co-workers will just look at you with an empathetic tone that says "I totes get how you feel".

I really, really hope that no one finds themselves in any situation where you have a bag leak in public, let alone at work or in a meeting. But I hope that this guide helps you to be better prepared for the worst case scenario. And by having these measures in place, it will help you to be more calm and collected when the 'shit hits the fan' and also helps put your mind/anxiety at ease.

p.s have you ever found yourself in a situation where you had to do a bag change or had a bag leak and it was the worst possible timing? If you are brave, feel free to share your story in the comments below. You can always post 'anon.' by simply writing this instead of your name.

 
Posted by: Talya AT 07:47 am   |  Permalink   |  Email
Tuesday, June 30 2015

NB: THIS IS A SPONSORED GUEST POST

In life, we all have our regrets and in hindsight wished we could go back in time and with the knowledge that we know now and not repeat the same mistakes again. I have many of these moments where I wished I did things differently or better and one of them was going to see a financial planner when I was 18 or 19 and something that was in place before I was married.

You see, not long after my wedding my dad broke the news that he was terminal with bowel cancer and that his type was caused by a rare disease called Familial Adenamatous Polyposis (FAP), which was caused from a mutation of the APC gene (a tumour supressor gene) and that it was also genetic. I underwent tests and was confirmed that I too had this disease, and as I was a newlywed I decided to apply for life insurance and was rejected on the grounds of the condition and as it is something that I have seen numerous insurers about and none can find an insurer willing to insure me as I am at high risk of cancer and more than likely will die earlier than healthy/normal peers my age.

Then I got sick in 2012 with severe endometriosis and required surgery to remove a 15cm round mass off of my ovary along with the lining of said ovary and removing/excising hundreds of sites of endometriosis. My surgeon said it was one of the most severe cases he had seen and especially in someone who was only 21. Because of the extent of the damage I was placed in a medically induced menopause which was truly horible. It made me so sick I was unable to work as I had these insufferable migrains and the nausea and hot flashes were cruel.

The week I stopped working was the week I was told that my bowel was turning cancerous and needed to have my bowel removed. So either way I would have been forced to stop working as I was told I needed 12 months off of work to recover, and then I was diagnosed with pancreatitis in 2013 which meant every other week I was in hospital for 7-10 days undergoing treatment for that, and then the desmoid tumours were diagnosed along with the thyroid cancer this year has meant that I haven't been able to return to the workforce as I am just not well enough to be considered reliable for work.

I can tell you the last 3 years have been hard financially, emotionally and physically and one thing I wished I had in place was life insurance to help me financially while I can't work, and money has been so tight and often stressful. I am just thankful my husband can work so hard to provide for us and support me while I am unable to work.

I really wished I had some sort of security in place, and it is something I hope through my mistake you will consider.

So I asked our friends over at Life Insurance Comparison to help explain how life insurance can be used while you're alive and become ill or disabled, and Sally has written a great guest post for us on this topic.

How Life Insurance Can Help If You Become Ill or Disabled

Wondering how you'll pay the bills if the main earner in the household gets ill, has an accident or dies can be a hugely stressful experience that can be avoided through life insurance. At Life Insurance Comparison, we're here to help you to navigate the often confusing world of life insurance so that you can get the right protection for your needs. We'll work with you to buy the right amount of cover and the most appropriate type of product to support your family if the worst happens. 

When you first think about life insurance, what comes to mind? If your initial thought was to with death, you may be unaware of the full benefits of life insurance. Many people mistakenly believe that life insurance only comes into its own if the policyholder dies but it can actually be an invaluable form of financial support if you become seriously ill or disabled and cannot work as a result. None of us want to think about the idea that we might be unlucky enough to experience this but it pays to be prepared.

In this post, we look at the ways in which life insurance can offer peace of mind if illness or disability occurs during the lifetime of the policy.

Life Insurance and Illness

If you become ill and are unable to work because of this, the subsequent stress could make your situation worse. Even if your lack of income is only a short term proposition, you could be under severe pressure to make ends meet if you don’t have savings to fall back on to tide you over. Fortunately, life insurance can provide an income to ease financial stress.

The exact nature of this income depends on the type of life insurance product that you buy. Income Protection Insurance will provide regular monthly payments that can be anything up to 75 per cent of your usual salary, which can be used for day-to-day living expenses while you are not working due to illness or an accident, while Trauma Insurance offers a lump sum payment if you are diagnosed with one of the medical conditions that are covered by the policy.

You’ll therefore need to think carefully about the kind of life insurance protection that you would want to have in place if you were to become seriously ill or disabled. Would you prefer to have a regular income stream coming in each month that can be used regardless of the situation? Or would you rather receive a lump sum payment if you diagnosed with a serious and traumatic condition such as cancer, a heart attack or stroke?

Life Insurance and Disability

Life insurance can also help if you become disabled and cannot work. In particular, Total and Permanent Disability (TPD) cover provides a lump sum payment if you become permanently disabled and this stops you being able to work. This type of life insurance cover is usually needed if a professional has confirmed that you will never be able to work again due to a new (and not pre-existing) disability. 

How Much Life Insurance to Buy?

Underinsurance is a huge problem in Australia in general, and this is definitely true for life insurance. This is because many of the Australians who do have life insurance don’t have enough cover to provide full peace of mind if the worst were to happen. You may already have some degree of life insurance through your superannuation fund but this is usually extremely basic and does not offer much protection at all. To be safe, you’ll need to have additional life insurance cover in place to fully meet your needs so that you are not caught out financially if you need to rely on the income.

With Income Protection Insurance, you’ll want to safeguard as much of your salary as you can afford (up to 75 per cent of it) so that you can still experience a good standard of living while you cannot work.

With Trauma or TPD cover, you’ll need to make sure that your lump sum payment is substantial enough to cover everything that you would want. You’ll therefore need to think about how much you would realistically need for regular outgoings and also factor in medical and rehabilitation expenses (if you don’t have health insurance that would cover some or all of these latter costs). Trauma insurance is generally the most expensive type of life insurance but it can turn out to be the most cost effective if you need to call on it.

Ideally, you should look to buy as much life insurance as you can realistically afford so that you are less likely to be underinsured. If you want the lump sum payment to be able to act as a long term source of income, this will obviously be more expensive to buy but would be very useful if you are unable work for over a year due to serious illness, an accident or temporary disability.

Thank you Sally and Life Insurance Comparison for explaining how beneficial it can be to have Life Insurance while you're alive! If you found this post helpful (or any on my blog) please feel free to leave a comment below.

 
Posted by: Talya AT 04:20 am   |  Permalink   |  1 Comment  |  Email
Saturday, June 13 2015

NB: This is a sponsored post

Lately, I have been thinking so much about how differently life as an adult actually is when compared to what I thought it would be like as a teenager. Oh how naive was my younger self.

There are things I never thought were important or necessary until the time came and I realised it was too late.

Here are my 5 things I believe that every adult should have in place:

#1 Life Insurance Policy
Growing up, I always thought that a life insurance policy was something that was only necessary when you had died to help you pay for your debts or your funeral or to help your support your loved ones.

I didn't realise that having a life insurance policy can actually be of help if you get sick and need time off work, or if you suffer an illness or injury and become disabled or unable to work again, the life insurance policy can help you out.

What I wished was that someone had of said to me when I turned 18 to get insurance, as it wasn't until I got sick that I went to take out a policy and told that I am now 'unsurable'. There were so many times that I wished I had that extra financial assistance when I was too sick to work.

I did however make sure that once I was married that my husband has the necessary cover in the event that he becomes sick. We met with our financial planner at our bank and set up the policy to be paid out of his super fund. It is convenient for us paying it this way, as I am often in hospital sick it is one less bill to remember to pay. We were able to nominate the total insured amount we wanted as well.

#2 A will
I know a will isn't something that a young person often thinks about taking out, or a common misconception is that "I have nothing to leave in my will, so having one is pointless". A will is more than a document that states who will receive your car or the balance of your bank account, it is also a document that can leave instructions for your afterlife such as whether or not you consent to your body being used in organ donation, or where you wish to be buried or if you are to be cremated.

A will also has instructions over who is responsible for your digital assets such as a blog, facebook etc and what you're wanting done with these digital assets when you die. My husband understands my clear instructions of what I want to be done with my blog etc when I die, he knows that I want to keep my blog open as a resource for all the young people in the future who have FAP or will be needing a stoma and are looking for support when they feel alone.

My husband and I were struggling to find a time that suited both of us to visit a lawyer, so we were so happy when we came across Nest Legal an online legal firm, not only did it mean that we could organise our wills from the comfort of our own home, but also meant working around a schedule that suited us and not around when both my husband and I could make it. It was a very convenient solution, and so lovely to deal with.

#3 Enduring Power of Attorney
It is a false reality that only 'old people' need an enduring power of attorney in place. The sad reality is that we have no control over what misfortunes or illnesses may come in the future, and it is important that we have things in place to not only help yourself but to help those around you to understand your wishes.

An enduring power of attorney is a document that is as important as your will, and is a document that nominates someone to act on your behalf for financial, legal and health matters if you become incapacitated or unable to make decisions for yourself.

It is important that you discuss with your loved ones whom you wish to appoint and what roles you expect of them. It is important to choose someone there won't be conflicts of interest with or someone who can remain impartial to decisions and can act with your best interests in mind.

To learn more about the different roles and responsibilities of a power of attorney, the NSW Trustee's and guardians has some great info.

#4 A Regular GP
Up until 2011, I didn't have a regular GP. It was more of a 'what ever doctor can bulk bill and is available' sort of situations I was finding myself in. Tell you what, it was rather an inconvenience... You would see a doctor and tell them all the issues you've been having lately and your past medical history then he would come up with a diagnosis and then the next time I needed to see a doctor it was starting the process all over again. It wasn't just wasting my time, it was also wasting the doctors time.

As my medical history was becoming more and more indepth with each visit, I made the decision to 'shop around' for the right GP and I happened to have found him 4 years ago and never looked back. It is really helpful now having 1 GP who receives all the correspondence from doctors, scans and blood tests rather than having a few doctors and not remembering which GP you saw for what issue.

Trust me, having a regular GP will make life easier!

#5 Health insurance or Ambulance cover
I know I have mentioned before how beneficial it is to have health insurance (read my 12 reasons why here) but it is also important to at least have an ambulance cover in place. A trip to the hospital in an ambulance can very quickly become an expensive excursion, I have received bills for $800+ just to go to the other side of town! Luckily, I had cover in place.

You never know when you or your family might need an ambulance and there is nothing more stressful when you're dealing with an emergency than worrying about how you'll be paying for it, instead focusing your energy where it is needed.

If it is health Insurance cover you need, speak to the guys over at Health Insurance Comparison to find out what policies there are to match your needs or lifestyle.

I have no idea why I was in such a hurry to become an Adult, some days being a kid sounds so much easier.

So while these might be my list of 5 things I believe every adult should have in place, I know that you might have other suggestions. Feel free to leave your suggestions in the comments below, it might be of value to another reader who hadn't thought of it.

DISCLAIMER: While this post was written by myself about my experiences and the 5 things I believe every adult should have in place, all views expressed in this article are mine. This post was written for Health Insurance Comparison.

 

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Posted by: Talya AT 10:45 am   |  Permalink   |  1 Comment  |  Email
Saturday, June 13 2015

There are some things in life that people shouldn't have to endure, but thankfully there are organisations out there to lend a much needed helping hand when you need it.

When I received my Cancer diagnosis earlier this year, Redkite were there for me and without their support I am certain my journey would have been completely different.

Redkite were there for me when I was alone in hospital for over a month in Sydney, 800km south of home.

Before I was referred to Redkite by the hospital social worker, I had seen Redkite on tv but never actually knew what it was that they did or how they helped others. Little did I realise that they were an amazing organisation helping young people aged 0-24 with Cancer and their families.

Here are 5 ways RedKite helped to make a difference:

#1 Red Duffle bag filled with goodies called a support pack
I remember when I was in hospital and got my diagnosis I was pretty devastated to say the least. I was anxious about what the future had in store for me, and I felt so lonely as my husband and family were 800km away.

When my youth support worker from the RPA Youth Team came in carrying this huge Redkite duffle overnight bag, I thought it was the coolest gift. Inside the bag was some amazing essentials that made the biggest difference to my hospital stay, and also since coming home.

There was:

  • a toiletry bag filled with toothbrushes and toothpaste and toiletries;
  • this super snuggly redkite blanket I take with me everywhere;
  • redkite travel coffee mug;
  • redkite drink bottle;
  • $50 coles gift card;
  • magazines;
  • visual arts diary with coloured pencils;
  • and there was so much more!

I take the blanket with me everywhere I go and snuggle up with it everyday, it is so soft and warm. I also use the bag heaps as well, often accompanies me to hospital.

#2 Financial assistance in the form of Coles or petrol gift cards
With all the travelling to and from Sydney this year, these petrol vouchers have made the biggest difference between whether or not I made it to the appointments. Let's just say things have been super tight this year with so much being spent on medical expenses (doctors, pathology, medications, radiology, hospital excess, surgery costs etc). The coles vouchers have made a huge difference too and has meant being able to buy groceries.

I am so appreciative that there is the support there when times are tough to help you manage financially.

#3 Education scholarships
If you're a young person with cancer and you're also studying or still in school, Redkite have education grants for up to $1000 that can help you with things like tutoring costs, course fees, stationery, or equipment.

These education grants can be a huge help if you're studying and help you to achieve your goals or ambitions. For more information click here.

#4 Dare to dream scholarships
These are national annual scholarships open to 15-24 year olds who've had cancer. The scholarships require you to enter a creative entry based on what your dream is and how having cancer has gotten in the way and how the scholarship can help you to make your dreams happen.

Applications close on the 13th of July. For more information visit here!

#5 counselling and help
One thing I have learnt from my cancer journey is just how lonely and distant you can become from those close to you, cancer can also be really isolating as well. There were times where speaking to Redkite really helped me to cope and learn new coping skills, but to also just have someone to talk to that isn't directly involved. It was hard talking to my family or husband about how I was feeling as I didn't want to burden them with my feelings and thoughts, so it was good talking to someone who understood.

Redkite can be contacted via 1800 REDKITE (1800 733 548), Monday to Friday, 9am – 7pm AEST or support@redkite.org.au.

Did you also know that they offer help and support to help you return to studies or the workforce? They can offer an individualised plan for 15-24 years who've had cancer and are wanting to return to studies or work. They work with you through setting a range of goals and a realistic plan to help you achieve them.

I would like to say a huge thank you to Redkite and for everyone reading this who donates and supports them. Their work that they do to help support young people like me who have had cancer is so important and has made the world of difference to my life. I will always be grateful for the support and help. 

Disclaimer: I wanted to write about my experiences with Redkite not because I was asked to or felt obliged to, but because I don't know how I could have gotten through this year without their support and help. I am sharing my experiences as they have made the world of difference to my cancer journey and I know first hand how important their work is. Please donate and support them so that they can continue helping young kids with cancer and their families.

 

 
Posted by: Talya AT 02:58 am   |  Permalink   |  Email
Sunday, April 12 2015

 

NB: This is a sponsored post

When I was 19 and was newly wed (literally a month before) I had my first consult with my colorectal specialist as I had just been diagnosed with Familial Adenomatous Polyposis (FAP for short). FAP is a rare inherited disorder which occurs because of a mutation of the APC gene. For those (like myself) that aren't experts on human anatomy and physiology, the APC gene (Adenomatous Polyposis Coli gene) which is known as a tumour suppression gene, is responsible for suppressing tumours in the colon and digestive tracts. So when you have a mutation of this gene, it in turn significantly increases your risk of not only colorectal cancers but other cancers too.

I only found out I had this disease as my dad had been diagnosed with terminal bowel cancer which was caused from the FAP.

So it was in this initial consult with my amazing colorectal surgeon that he asked me if I had Private Health Insurance, and when I replied that I didn't he said to me "First thing to do when you leave here is to get yourself covered. You're going to need it in the years ahead".

So I left his office and started researching different providers and the main thing I was looking for in my cover (at the time) was to be covered for colonoscopies and gastroscopies and also to find which one I had the shortest wait on to claim for a pre-existing condition, which was 12 months (some are 18-24 months).

I became overwhelmed with my research and really wished I had of gone through a company that specialises in health insurance comparisons, such as Health Insurance Comparison, as it would have made things so much easier. Instead, I went old school and called every provider that came highly recommended or I had heard good things about. I ended up going with NIB, as they were the best fit for me and my situation and have had my cover with them for 5 years now (but still good to compare what all the providers can offer you).

There are different levels of cover to suit each individual's health and situation which fall under Hospital and/or Extras. Hospital cover, refers to the cover needed for hospital admissions or proceedures (there are some exclusions which you will need to find out before getting a policy, for example I am not covered for pregnancy or IVF related, but covered for most proceedures). Extras cover, refers to things that aren't covered by Medicare and includes things like optical, dental, chiro, physio, psycology, weight loss programs and some non PBS medications (there are more inclusions depending on the level of cover you need).

One thing that I didn't realise before I was 19, was just how beneficial having health insurance could be. I always thought that if I had just a medicare card that it was enough and to be honest I thought it was an expense I didn't need.

"But once I got the Private Health Insurance cover and have had it now for 5 years, I have learnt just how wrong I was when I thought I didn't need it!"

Here are 12 ways that having Private Health Insurance (PHI) has benefited me over the last 5 years..

#1: I get to choose who my treating Doctor is.... 
When you are sick and have become familiar with a Doctor or Surgeon and have built up a relationship of trust with them, it is a no brainer that you would want them to do your operation/proceedure or to treat you. When you are admitted into a Public Hospital as a Private Patient, you can choose who your doctor will be for the duration of your care.

#2: By using my PHI in a Public Hospital, I am actually helping the hospital! 
Each Public Hospital has medicare funding, and when a patient is admitted to the hospital as a medicare (public) patient all the costs associated with their stay e.g. blood tests, doctor consults, theatre fees, medications, accomodation etc is all charged to the medicare allocated funding of that hospital. So when I am admitted as a Private Patient in a Public hospital, the hospital is paid more and directly from the health fund, meaning that when I have scans or need to stay overnight the money goes directly to the hospital and can help them to provide more services to patients. I have had public hospitals send me a letter of thanks before to show their appreciation of me using my PHI in their hospital. If it means I can help others, I am all for it!

n.b: when you are admitted as a Private Patient in a Public hospital, usually you don't need to pay any out of pocket expenses such as your excess, but it is always important to double check with your hospital and policy provider.

#3: In a Public Hospital, you will get some great freebies if you use your PHI!
Have you ever had to stay in hospital for a number of days (or weeks) and have realised just how expensive it can be to hire out the tv? I think some hospitals charge between $6-$9 a day. So if you're in there for 5 days (for argument's sake) you could be looking at spending between $30-$45 JUST ON THE TV HIRE! I don't know about you, but I would much rather have the spare cash to get a drink or magazine from the gift shop. BUT if you use your PHI in a Public Hospital not only will you receive the TV hire for FREE, but you'll also get a FREE daily paper saving you up to $2 a day! C'mon who doesn't love a FREEBIE?

#4: You can sometimes get your own room.
In a Public Hospital the private/single rooms are pretty scarce and are given to patients on a clinical needs basis (whether public or private) but when there are patients who aren't requiring a single room, you can request to have your own private room (subject to availability) and is something you can discuss with the hospital. I don't always get my own single room, but sometimes I do for a couple of days, which is nice to just have some privacy and peace. This is different to the room settings of a Private Hospital, which most times I have stayed in the Private Hospital I have had my own private room with ensuite.

#5: When you need a surgery, you don't have to worry about long Public wait lists.
There have been times where for this reason, having PHI has saved my life. I am not saying that to be melo dramatic by any means, it is the truth. When I have gone to see my specialist and they have realised that I need to have a proceedure done quickly, they have booked me into the private hospitals on the next theatre lists. Examples of times have been:
a) I was experiencing really bad pains in my abdomen and pelvic area for months and when I got in to see a specialist he had me booked into theatre the following week to investigate what was wrong. I had a hysteroscopy, laporoscopy & cystoscopy and was diagnosed with stage IV Endometriosis. I had a 15cm round mass removed off of my left ovary with the lining of said ovary removed, a couple of 7cm masses removed from my uterus and hundreds of 1 & 2cm sites removed from elsewhere in my pelvic and vaginal area. My surgeon said it was one of the most extensive and worst cases he has seen in his career and for someone who was only 21, and to help me recover put me in a medically induced menopause for 6 months. I would have been waiting A LONG TIME on the public system to be seen, and who know's how much worse I could have been!
b) I was experiencing a lot of rectal bleeding and pain, and trying to eat food was not only an unpleasant and painful experience, but was resulting in really bad case of 'the runs' and there were times I felt I might not make it to a toilet. I saw my colorectal surgeon, who booked in for a colonoscopy that week at the Private Hospital and it was discovered that the polyps in my bowel had grown bigger and were starting to turn into cancer. So thankfully I had my bowel removed a couple of months later before it had time to fully turn into cancer and cause trouble.
c) Recently, I was diagnosed with Papiliary Thyroid Cancer and saw a specialist down at Sydney who is going to remove my thyroid (in a couple of weeks) and thankfully I had PHI insurance as the earliest he could do it on the public lists at the public hospital was August and that is still 4 months away! Instead, I am going to a new cancer hospital in sydney and I had control over where I had my surgery, what specialists and when I had it.

#6: You can sometimes get your glasses for FREE*
If you need glasses and can't afford the $400+ (or if you are saving for that holiday but need glasses and its an expense you don't want to part with), check with your Private Health Insrance extras cover as you may be entitled to a FREE or discounted pair of glasses. I get my glasses from Specsavers and sometimes they have a 2 for $199 special offer and have partnerships with different health funds that you can be entitled for the glasses for FREE or discounted and sometimes with no gap to pay either! Seriously, if optical is something you need it is something worth looking into as it can save you money! IMPORTANT: Check with your PHI first on what entitlements or extras cover you have before you purchase your glasses. They can also advise you on how you can claim your glasses under your cover.
*When I say FREE, some policies entitle you to claim all or most of your costs back to the PHI, check with your policy and provider.

#7: Speaking of extra's cover, how painful is a trip to the dentist on your wallet?
Just like optical extras cover, dental cover can help you save money too! It is important to speak with your insurance provider about what dental cover you are entitled to and how to claim before you get your tooth pulled so you know what to expect with any gap or out of pocket expenses.

#8: A ride in the Ambulance can become rather costly, but if you have PHI it can be FREE to you.
If you have PHI, your bill will be directly sent to your provider and depending on your policy and cover you might not have to pay anything additional. I remember once my sister had an epileptic seizure and my parents got sent a $900 bill. You never know when you might need it, but it is always best to make sure you have the cover there.

#9: Staying in a Private Hospital can be quite expensive if you aren't covered.
I was so shocked when I received a letter to show what was paid to the Private Hospital for a 3 week stay (was in excess of $21k) and thankfully was all covered by my policy. Except the excess of $250, which I have to pay twice a calendar year, my admissions don't cost me any extra and the level of comfort and care is really top notch. Don't get me started on the FOOD!! My first night I stayed there as a part of my 3 week stay (when I had my total colectomy), I had Roast Duck for dinner! Seriously something you would pay $40+ at a high end restaurant. Even the breakfast was gourmet! And I love having colonoscopies just so I can have their sandwiches (if only they sold them to the public I would eat there all the time), yes I have an obsession with their sandwiches, but when you have them you will understand just how good they are. Oh and did I mention FREE WIFI and FOXTEL in your rooms too, as well as private rooms with own little balcony (well the Private Hospitals I have been to have had WIFI and FOXTEL). It really is a great environment to recover in.

#10: Sometimes we need a little EXTRA help...
If you are needing additional services like psycology, braces (orthodontics) or speech therapy, these can sometimes be covered under your extra's package and can be claimable up to 75% back for some funds. These aren't the only extra's that you can be covered for there is a whole list of additional (and rather costly services) that you can claim back on. This is another way that you can save by having PHI. Always best to consult with your provider on your cover etc.

#11: You could be paying LESS in Taxes!
If you earn over a certain threshold and don't have PHI the Government may charge you more in taxes. There are also incentives given by the government to try and get more Australian's using PHI and offers rebates which are organised through your tax return. You will receive a financial statement at the end of the financial year ready to do your tax return.

#12: If you take your policy out before you turn 30, you'll avoid paying the LIFETIME LOADING FEE!
To try and incentivise more people taking out PHI earlier on in life (before you are 30), the Government has introduced a Lifetime Loading Fee which is a 2% additional fee applied for every year you are over 30 when you take out your cover. As explained on PrivateHealth.Gov, if you are 40 when you take out your PHI policy, you will pay 20% more than someone your age who took out their policy before they turned 30. The maximum loading is 70% and if you hold your policy for 10 continuous years it will be removed. The Lifetime loading fee will be calculated when you enquire about a policy, but best to do it before you turn 30 so you save in the long run! As I was 19 when I took out my cover, I don't need to worry. However my husband didn't take out a cover until after he was 31, so this applies to him.

My advice to you....
If you are chronically sick, or if you know in your future you will be needing operations, proceedures (like colonoscopies etc) or if you would benefit from claiming back on extra's such as optical, dental, chiro etc it would be best to look into how having PHI could actually be helping you in the long run. I know being sick is expensive, and there are some expenses we just can't avoid but I know I owe my life to having Private Health Insurance and I am so glad that I have it. I pay my premium fortnightly which is direct debited from my account (also get discounts applied for direct debit payments. But honestly, it is best to shop around and speak to the different providers about how they can help you and your health needs or speak to a comparison provider like Health Insurance Comparison who can help guide you to finding the right policy.

Thanks to Health Insurance Comparison, you could win a year's worth of PHI! Click the ad below to find out more!

I hope that this is a helpful guide into how beneficial having PHI is for me, and I hope this helps you to know a bit more about how it can help you too!

DISCLAIMER: While this post was written by myself about my experience in how beneficial PHI is to me and all views expressed in this article are mine, this post is not affiliated with specsavers or NIB but was written for Health Insurance Comparison.


 

 
Posted by: Talya AT 07:37 am   |  Permalink   |  Email
Tuesday, April 07 2015

When I was diagnosed with cancer earlier this year I did so much reading and research and read every pamplet I could find related to my cancer.

But there was one thing that I learnt about cancer that wasn't in any of the brochures or books that I read... there wasn't anything that would tell me how I should expect to cope or the stages of emotions I would experience.

Just like the 5 stages of grief, I found there were 5 stages to my cancer diagnosis and journey.

#1 shock and denial
I remember when my doctor told me that I had cancer, I had just gotten back from having some breast biopsies done when she came to tell me that my thyroid biopsies that were done two days earlier had come back positive for papiliary thyroid cancer. It was 5PM on a Friday afternoon and she just got the results as she was leaving for the day.

I remember the feeling of disbelief, that while I knew it was always a possibility it was only a 2% chance. I didn't think it would happen, especially at my age. 

I remember hoping that it was a mistake and that it was made in error.

It wasn't until I called my family and husband back home to tell them the news that it really sunk it. It hit me all of a sudden and I just couldn't stop crying

#2 pain and guilt
All I wanted to do was apologise to my husband and my family for them being upset and for them hurting over my news. I felt guilty to my core that I was having to put them through another family member with cancer especially with everyone still grieving and hurting from the loss of my dad to bowel cancer in 2012.

All I wanted to do was take away their pain and tell them that everything is okay.

I didn't want to tell them just how upset I am/was or that I wasn't coping as I felt if I was being strong enough for everyone to see then they won't be upset, I felt if I were to show just how much I am hurting that they wouldn't be able to cope.

It was like an endless circle.

#3 anger and bargaining
If I said that I wasn't angry or didn't experience anger you could call me a liar... but even though I have had my thyroid removed and all the cancer even a month later I am still feeling this anger. Well.. I don't know if it is more anger or irritability but I know that my emotions and reaction to the journey I have been on this year isn't quite finished.

I know there was bargaining (and still often happens) that I kind of put it out to the universe that if I were to win lotto I would donate to the charities that have helped me and then as good karma it should be enough that I have no more issues from this disease FAP that has caused havoc in my life and mysteriously get cured from all ailments... Then and only then, can I become a normal 24 year old... whatever normal is!
 

#4 depression, reflection and lonliness
Has anyone ever said that having cancer is actually really lonley? Well it is. It is like you have some sort of plague and people fear they will catch your cancer, so they best steer clear. You will lose friends, but you will also realise just who your real friends are.

You will have so much time reflecting on your life that it makes you so much more depressed. I turned the big 24 in March, and I always knew growing up that by the time I turned 24 I would have been married, had started a family, owned my own house, finished uni and had a great career... I turned 24 and all that I have out of my dreams of accomplishments is that I got married. I look back on the last 6 years since I left school and feel like an absolute failure. All I seemed to have mastered is being sick and being in hospital! Brain surgeries in 2009,  endometriosis surgery 2012, total collectomy 2013, pancreatitis 2013-present and thyroidectomy 2015.

And the next person to tell me 'go for a walk' or 'you really shouldn't complain your life isn't that bad' might just get their head bitten off. Depression (having had it since I was a child formally diagnosed when I was 12) isn't something that you can just walk off!

One thing I can certainly reflect on is how much I have lost because of FAP and cancer.

#5 acceptance and hope
It is a hard task to become fully accepting of your situation... like  fully accepting means you understand that you won't have a normal life, or accepting the fear that each new day might be your last. Acceptance is scary. Acceptance is the understanding that this is just how it needs to be, that there is a purpose for all this pain and suffering. I have always believed that my role in my life was to try and help others and make so much of a difference that I will save someone's life.. so I have accepted that I am going through all this torment with FAP, cancer and desmoid tumours because someone out there needs to hear my story whether it is complete strangers or if it is my two youngest sisters who will have their own FAP journey ahead of them.

I know it sounds cynical, but I have to  believe and accept that me going through all this serves a purpose....

The word hope is a noun, and it can be a pretty powerful word at times and gives off a strong desire to want things to happen as you want or expect them to. I learnt this week how upsetting it is when hope is taken away from you. I have been on a 3 month trial of temoxifen and sulindac to shrink my desmoid tumours invading my abdomen. I had my CT scan this week and realised the tumours haven't shrunk and are growing. I go back to Sydney next week and have it reassessed and hope (there's that word again) that we can find a treatment that works... I am mostly bummed because I was hoping for a miracle and that the tumours have gone away and that I could be experiencing a pain free day... I was so hopeful that this was almost the end of these tumours.

Don't forget that there is help out there...
CanTeen offers amazing support to 12-24 year olds living with cancer whether it is themselves, a sibling or a parent/caregiver who has a cancer diagnosis. They offer FREE counselling support both online and over the phone. Head to http://www.canteen.org.au/ to find out how they can help you or your family

RedKite is another amazing organisation that supports young people 12-24 with cancer and also offers financial assistance as well as counselling. To access counselling call 1800 REDKITE (1800 733 548).

Cancer Council also has a program called Cancer Connect where you can connect with someone who has experienced cancer and knows how you feel.  You can call 13 11 20 to find out the different support available to you.

HeadSpace is a not for profit organisation that helps 12-24 year olds with mental health issues. They have an online help available as well as help at local centres.

Beyond Blue 1300 224 636 is the number to call to chat with someone or they have web/online chat available too. Beyond Blue are a great resource to helping you understand your depression or anxiety and has a lot of information on their websites.

Kids Help Line 1800 551 800

Lifeline 13 11 14

 

 
Posted by: Talya AT 10:23 pm   |  Permalink   |  Email
Wednesday, January 21 2015

 

I seem to be driving my husband insane lately...... well more insane then usual.

Ever since I had my bowel removed and no longer frequent the toilet hundreds of times a day (that is no exaggeration by the way), that I have kind of become a self titled toilet creeper.

Now I don't want this title by any means, but now that I don't spend so much time in the bathroom and more so on the toilet, I am really starting to notice how long others spend on the toilet.

Which my husband says is driving him insane.

Reason being, is I am a strong advocate for bowel cancer awareness, bowel cancer screening but importantly that bowel cancer can happen to young people not just in older people (people over 50).

My husband, is having a 'half way to retirement' party in March for his birthday (my joke that he is old and turning 35... well there is an 11 year age gap afterall..), so I have become a bit paranoid lately that he spends too much time on the toilet and he needs to get checked.

Do you know how frustrating it is when you're waiting to go out to dinner, waiting to serve up dinner, or waiting to do something and someone is in the bathroom for an hour holding you up?

Well, that is how I feel and felt my concern was warranted. Rewind to 2009-2013, that was me!

Turns out he is just addicted to playing games on his iPhone, and as he works 8 hours a day it is the first chance he can play all day. Honestly, his routine is walk in the door, say hello, go to the toilet, then have a shower.

So while I felt my concern is warranted, and turned into a toilet creeper, I think my husband is okay.

But it doesn't remove my anxiety...

I think as long as I am alive I will be advocating that if things change and are not 'normal' bowel movements, that you should see your doctor. As early intervention and diagnosis is key for beating this dreaded and horrible disease.

Well I guess being a toilet creeper isn't so bad, as it might just save his life one day!

p.s Lesson for all those men (or women) who spend time on the toilet addicted to playing their games on their phones... your partner might just think you need a colonoscopy.

 
Posted by: Talya AT 07:19 pm   |  Permalink   |  Email
Monday, January 19 2015

 

I try and be as ostomistic as I can about the whole 'having an ileostomy' thing, and never try and say that I hate it (because truth be told it is SOOOOOOO much better then sitting on the toilet in agony for most of the day). But there is one thing I absoloutley HATE and feel embarrased over, is the stench that is left behind when I empty my bag.

If you have read my post of the 10 things they don't tell you when you get an ileostomy, you would know my 4th tip was that "your output will smell horribly", which it does. I made a comment about how you should "be prepared to have many cans of air freshner, and one in your handbag" for when your out and about.

So I must admit I have tried the whole taking a can of toilet spray with me in my handbag when I go to the shops, and boy has there been some awkward stares when you are at the checkout line rifling through your handbag to find your wallet when out falls a can of toilet spray or as my husband likes to refer to it as "the stink be gone can", and you have to try and justify THAT YOU ARE NOT STEALING TOILET SPRAY... let's just say shit gets really awkward.

So what if I told you that I have found the perfect addition to your stoma kit, that not only will it not cause awkward or embarrasing stares, but will at least help you retain some of that dignity (that is otherwise flushed away).

Introducing the Scentsy Room Sprays!

For Christmas, my husbands mum and sister had made up this cute little basket filled with all these delicious smelling products, and one of them was a Bora Bora Blossom Room Spray. So when my mother-in-law mentioned well gave examples of times where it has come in handy and after seconds of spraying the mist the house smells so much nicer and the smell has completely faded away...

So of course my darling husband pipes up and says "Oh that would be awesome so you no longer stink up the house" (gees thanks Russ I love you too) it actually gave me a great idea for its use.

So off I went to add this spray to my stoma kit, and it is amazing! I spray it just before I empty my bag when in a public toilet (or at someone else's house) and then again once I have finished to be safe. And I love it!

It is compact and not bulky, it is discreet in the sense that it looks kind of like a body mist or perfume, AND IT IS SILENT!! No more of this "shooooooosh" sounds from the toilet cublicles as I spray the smell away, and no more waiting until everyone leaves the toilet before I emerge to avoid those judgemental stares!

Best of all, it is only $12.25 and comes in a 80ml bottle, and as you only need a couple of sprays/squirts at a time, you won't run out in a hurry!

Oh and did I mention it comes in a large variety of scents too?

Seriously though, this is my favourite item in my stoma kit!!

 
Posted by: Talya AT 01:01 am   |  Permalink   |  3 Comments  |  Email
Sunday, January 18 2015

 

Are you looking at returning to studying on campus this year?
Do you have a stoma and worried about if this will affect your studies?

Well believe it or not that was some questions I had this time last year. I had just found out I had been accepted into a course I have been wanting to study for a few years and was worried how I could manage full time study as I now had a stoma.

So I thought I would share with you some tips/products I found that helped make my life easier when studying on campus, and a few of you have been emailing me this same question, so thought I best do a post for you all.

Sharing my 10 tips that made studying on campus with a stoma easier!

#1 Meet with the course coordinator or support officer BEFORE the study term kicks off
For those who know me, know that I am a very stoic person (some say stubborn) and I haven't quite grasped the concept that IT IS OKAY to ask for help. 

I started studying last year and tried to get through the first few weeks before I realised that I needed help. I was finding that for 4 out of 5 days each week we would be in a classroom that was small and it was cramped, but I was in pain for 6 hours a day because of the desks. There were some desks that sat right at the height of my stoma and really pushed against my stoma all day and it was uncomfortable and painful, and don't get me started on the chairs. The chairs were cutting the circulation off in my legs/feet which since I first was diagnosed with pancreatitis I have had issues with my feet swelling, so this only added to the pain and discomfort felt each day in the classroom.

After a few weeks I worked up the courage to meet with the course coordinator to see if there was any chance that there could be accomodating desk and chair in the room that I can use. I had these arranged, but the people who were in my class became a bit judgemental about it all so I felt uncomfortable to return to class (so I instead changed to an online campus as it became too upsetting).

So I suggest before you start studying on campus, that you meet with someone and ask to check that the desk and chairs in the room are accomodating to you having a stoma and won't cause you any discomfort. It would have been much easier at the beginning of the course for me if this was in place to remove people asking questions later on.

#2 Find the right bag/backpack
One thing that is super important when studying on campus is making sure that you are supported in not only facilities at the campus but also in having the right and essential items to help you get through the day.

I am sure by now your doctors and stomal nurse has discussed the importance of hernia prevention and practising techniques that will help eliminate any chance you get a hernia, after all having a stoma will increase your risk of developing a hernia.

One way you can do this is by finding the right backpack that not only is comfortable to have on your back, but is also at the right height too. You want a bag that doesn't cause your back to hunch forward.

Some tips to remember when choosing a backpack:
* Make sure the bag has 2 even straps, this helps to distribute the load evenly. Bags with 1 strap can cause damage to your neck, shoulders and back.
* Choose a bag that fits you and is appropriate for your body size (weight and height), the bag should rest comfortably on your back
* The bag should have adjustable straps and buckles to allow the bag to be lowered or heightened into the right position
* The centre of mass should be at weight height not higher or lower
* Opt for a bag that has a waist belt, so that your bag can be closer to your body when moving/walking to prevent injury or strain
* Straps should be padded and wide to help distribute the weight, also easier on your shoulders and waist

#3 Don't have a heavy backpack
So we all know what happens when you are studying whether as an adult student or as a student in school, that you have so much to carry each day between books, lunch box/drink bottles. But if you carry to much in your backpack not only will you likely cause yourself back damage but also run the risk of herniating your stoma/abdomen (remember that after all you DO need to be wary).

Last year, I knew I didn't want to run the risk of a hernia or damaging my back while having my backpack full of text books and what not, so I invested in getting a zippered folder that had a binder inside to hold my books in place, and also had enough space for my text book too. I carried this around with me and it wasn't too heavy either and it meant there was less in my backpack. I got mine from PB TEEN in the US and had it shipped to Australia, as I had spent a good 2 weeks searching for one that I liked in stores and online in Australia and kept finding boring plain black leather ones.. don't get me wrong if you like that style then that is great, but I like things to be a bit of fun and eccentric like me. Postage was great and I had my new folder within a week or so.

If you don't fancy carrying a zippered folder (compendium) around, you can always look into a backpack on wheels so you can wheel it around... also helps remove the heavy backpack issue too!

#4 Packing your stoma supplies
There is one thing you should always do, and that is every time you leave the house make sure you pack your stoma kit. The last thing you want to do is be on campus stuck without your supplies in the even that you had a bag leak or accident. I got a nice toiletry bag made for me (but you can purchase these anywhere, even an insulated lunch box works perfect) and inside have enough supplies for a couple of bag changes. I also have some scented garbage bags (read my review/reccomendation here) and also a clean pair of undies in case the others are accidentally soiled.

If you are unsure of what to pack in your stoma kit, download our FREE packing checklist guide here!

#5 Invest in a diary
One thing I have learnt the last couple of years is that my memory IS NOT what is used to be. I have found it only got worse after the 6 month course of being in a medically induced menopause, and even noticed that with having a stoma I have troubles remembering things which could be linked to being anaemic or deficient in vitamins and minerals (as my body is not absorbing these as much anymore)... Although my husband is somewhat disappointed that I still recall enough to win a disagreement and to prove my point.

But I found by having a diary I could write down things I needed to do for each class and as homework, but also is useful to write in reminders for assignments too! 


I got this really pretty and thorough diary from Typo and it is so elegant that the pages are lined with gold. Just a lil' bit fancy (really need to pronounce it like fun-cay, you know how some like to call target tarjay).  I think this was around $30 or less.

#6 Pack your lunch each day
I know how tempting it is to have that little bit extra sleep of the morning, and just how much of an inconvenience it is to pack your lunch when you can just buy it from the cafeteria/canteen on campus.. 

Well not only can studying be costly, but if you can help reduce costs each day, your wallet will be better off! And besides if you pack your own lunch not only do you know what is in your food, but you can save time standing in line trying to decide what you can eat or what won't disagree with your stoma.

Wanting some great and nutritious lunch box tips and ideas? Then read this article by Mum Central, which has 5 fresh ideas for your lunchbox.

#7 Keeping your lunch and snacks fresh
If you have read the above article and are planning on packing some fresh food, or foods like yoghurt you want to keep refridgerated and cold, you would be needing to ensure that your lunchbox stays cold enough.

We all know that foods that sit in lunch boxes can sometimes not look or be as fresh when it comes to lunch time if the lunch box is not kept cooled enough, which can also lead to causing upset stomachs (which we don't want).

So what if I told you that I came across this amazing product last year that was a refridgerated lunch bag that literally kept my food cold, fresh and appetising for up to 8 hours! Would you believe me? Well you better, because the Fridge-to-go lunch bags (as the name suggests) acts as a fridge on the go. It is pretty innovating how it works, by putting these panels (look like lunch box ice cubes) in the fridge over night, then putting in the lunch bag in the morning, and it keeps your food cold all day! Seriously was the best product I had last year to help me survive on campus study! They also have a FREE ebook on fresh lunch box ideas if you subscribe to their mailing list too!

Trust me when I say there is nothing worse than a  yucky, hot, salad at lunch time.

I purchased the mini fridge cooler bag as it had more room and loved it!

#8 Keeping hydrated through the day
One thing that I know I need each day is a litre of electrolyte sports drink (like Maxx, gatorade, poweraide etc) to help replace the fluid and electrolytes lost throughout the day. 

When I started studying on campus last January it was so hot around 36' each day, the classrooms had no airconditioning and everyone was sitting literally shoulder to shoulder with some sharing a tiny desk. It was hot, it was gross and it was making me feel sick. Read some earlier posts on hot to manage living with a stoma in summer heat here.

So for me there is nothing more refreshing than a nice, cold beverage on a hot day, so rather then having to freeze my drinks to ensure they stay cold all day (which sometimes when you NEED them they are still frozen) I purchased the wine cooler fridge-to-go bag, which fits my 1LTR electrolyte drink in perfectly! So not only is it good for keeping wine cool but also drink bottles too!

I remember waiting at the bus stop at 3.30PM after classes had finished for the day, and pulled out my drink bottle and it was still cold and felt refridgerated. It was so REFRESHING!

#9 Don't drive each day either take public transport or car pool
One thing that helped me to be more organised each day was taking the bus to uni/TAFE. Not only did it save on the stress of trying to find a car park than walking a mile to get onto the campus, but it also helped me to save money on petrol costs. 

#10 Purchase a power bank for your phone
If like me you use your iPhone (or other phone) all the time, then you would know how frustrating it is when the battery runs low and you are waiting for an important phone call/email/text.

I went into my local electronics store and purchased a power bank charger for my phone, which has been an absolute lifesaver on a number of occasions! Simply charge it up the night before, then put it in your bag when you leave the next morning. When your phone starts running low on the battery grab the USB cable and plug one end into your phone and the other the charger, and watch in awe as this contraption with NO power source is charging your phone up!

I purchased mine (a pink one) from JB-HIFI for around $40 and I take it everywhere I go when I am out and about, and when my phone starts looking tired and sick I just plug it in and give it a fresh bout of life!

I really hope that these 10 tips that helped me to study on campus with a stoma help you too!

P.S if you have a question or issue you want help/advice on, please send through an email from my website or a message via my facebook page. If my blog has helped you in any way please let me know!

 
Posted by: Talya AT 08:29 am   |  Permalink   |  Email
Wednesday, December 17 2014

 

We all know that one person in the family that no matter where you go, they always forget to pack something!

In my family I am sure they all would say that person is me... I swear sometimes I would forget my head if it wasn't screwed on (lol).

I went away last weekend and in a rush packed my overnight bags and restocked my stoma supplies.....

I was in a rush and was rather fllustered and thankfully didn't have a bag leak as I just realised I grabbed the entirely wrong stoma bags!

So it got me thinking how many other people with Stomas are finding themselves stressed, flustered and overwhelmed in time for Xmas, and especially those who are heading away for the holiday season.. so I decided I would create a check list printable for you to download, print off and pack your bags.

Just like Santa, we need to make a list and check it twice!

I know for me personally, I tend to only get bag leaks when I am away from home and become stressed. This is my first Xmas with a stoma that I will be going away, and as I won't be just able to zip back home to grab a supply if I do get a bag leak I need to make sure I am prepared first!

If you too need a checklist of what supplies to pack, to help make things more enjoyable and easier this Christmas, then click here or on the image to download your FREE checklist.

If you think I have forgotten or left anything off the list please let me know!

Have a lovely Christmas, and don't forget to enjoy and cherish those loved ones in your life.

 
Posted by: Talya AT 01:48 am   |  Permalink   |  Email
Tuesday, December 02 2014

It isn't very often that I have a moment or two spare to just sit and dwell on my thoughts... actually I try to avoid it if possible as it can often cause more harm then good.

It is moments like these that I often think to myself if I could go back in time and meet my younger self (gosh I sound so much older then 23 right now) what messages or pearls of wisdom would I share?

Here are my 5 things I wish I could tell my younger self:

1. YOU are worthy of being loved!
You might think this sounds strange, to tell your younger self that you are deserving of being loved. But if you have grown up not really knowing that you are loved and aren't worthless you will become a young adult that is so insecure, that one day you worry that you just won't be loved anymore. I can tell you I know what it is like not knowing that you are loved, appreciated or worthy of being loved until you happen to be buying a computer and this older, quirky, nerdy, HOT AS and funny computer salesman decides that he wants to spend the next 2 hours trying to sell you a laptop and chatting (I really mean flirting) with you.

You will leave the store with neither a laptop nor his number, and will go home and feel sorry for yourself. You need that laptop as you will become so frustrated with how slow your much loved "Toshi" Toshiba laptop has become since recently finding itself in your bedroom that was inundated with flood waters. You try and perservere for 2 months with your Toshi gradually dying, and just try to work up the courage to return to that shop, hope the hot salesman that rejected you does not remember you (or see you) and that you will leave with a laptop.

But before you return to the store, be sure to cut your hair short and dye it a deep red/purple colour (trust me you will ROCK it) and then return to the store.

What you won't realise is just that once he turns and looks at you he will instantly recognise you and acknowledge you by name. You do let out a loud "oh fuck!" and try to hide your embarassment.

But my dear, don't fret because you will leave the store that day with not only a new Toshiba "Toshi 2.0" laptop but also with his number, which you arrange a date a few nights later.

You will soon realise what it is like to have met someone who is so caring and doting and would honestly take a bullet for you. He will surprise you and your family by sitting with you a month after you start dating as you go through brain surgeries over the next 3 months in hospital.

He will surprise you 3 months after you start dating when he calls and says "Guess what I just bought?.. A $5500 engagement ring!". You will be shocked and instantly feel upset as you thought everything was going great but he must of been in love with someone else as surely that ring isn't yours.

But it was, and surprisingly your overprotective father will let you become engaged at just 18.

You will marry on your 1st wedding anniversary, a ceremony that is low key and intimate with a bigger party/reception with your family and friends. The day will have its many hiccups, which you will just laugh about afterwards.

You will go through many, and I mean MANY obstacles in the first 5 years of your marriage which only will make the bond and love you share deepen. You will be paranoid that it will all become too much for your husband and he will want out, but he tells you to stop being silly and when he says he loves you, you can tell he really means it.

So while it may seem right now that you are alone and that you won't ever find the happiness that your friends have or feel like a freak at school because you are the only one without a boyfriend, you're prince charming is only a couple of hours away waiting for you in a computer store!

2. As soon as you are old enough, get life insurance!
You may roll your eyes at me for trying to have 'that' grownup talk with you, but it really is something that you need to organise before it is too late. Don't wait until you get married to look into it, or when you start trying (and failing horribly) at falling pregnant. You need to do it as soon as you are eligible.

See, what you (or our dad) don't realise is that deep down in our DNA we literally have a ticking time bomb within us.

You will have been told by Dad weeks before your wedding day that he is unwell but getting tests done. But you won't realise until your actually walking down the aisle arms linked that there is something seriously wrong. You pester him the whole time you are walking towards the waiting guests about what is wrong as you notice in 2 weeks since you last saw him that he has dropped a lot of weight. You keep pestering him and he will keep sternly replying "Not today Pumpkin" followed by "I am not doing this today, this is your day and we will talk about it after your wedding". You know deep down something is wrong but you put on a brave face and continue walking what feels like forever to your wedding. Be sure to cherish and take in the moments from that day.

A week after your wedding you get a phone call from dad asking you and Russ to drive down tonight for a "urgent family meeting". You know that in your entire life, not once has there ever been a family meeting. You know something is wrong....

You learn that your dad is terminal with bowel cancer and only told he has a matter of years with agressive chemo left. He waits until your siblings leave the room to process it all, and he informs you that the type he has is extremely rare and it is also inherited. The punch line is that he is confident you too are a carrier.

Now if you haven't organised your life insurance by this point you better do it now, as once the genetic testing and colonoscopies start in the next couple of weeks and confirming you do indeed have FAP, you will be void of any life insurances as it now is a known medical condition and the insurers are smart enough to know that FAP will more then likely lead to cancer. So you are too risky to be insured.

You will be overcome with guilt forthwith as you have nothing but debt to leave your husband if you were to die today. You feel terrible that you won't be able to help support him or look after him when you're gone.

You will have WISHED someone told you to get life insurance.... that's why I am telling you now!

3. Fight more for your health!
You will be bedridden for days each month, which means missing school and work and being in immense pain from your periods. You know that you aren't the same as all your friends as you were very young when you first got your period and it has always been painful, but you were told that it was normal.

You will see doctor after doctor to try and identify why you have such bad pain, why you vommit for days, and why you have diarreah when you get your period. You will be told again and again that it is normal and not to worry.

You tell doctors for years that you are certain you have endometriosis, but only told that "young people don't get endometriosis" and that again "this is normal".

You go through this horrible time for years and you will give up on fighting for answers until you are 21. You will have been referred to this incredible OBGYN who after a thorough consultation with you and your husband, books you in for an invesitgative laparoscopy, hysteroscopy and cystoscopy the following week.

You go in for your surgery and wake many hours later to be told that "you have severe stage IV endometrisosis" and that "it is one of the worst cases I have seen in my career". You will be advised that due to the extensive damage caused involving removing a 15cm mass from your right ovary, 7cm mass from your uterus and hundreds of 1 & 2cm masses from your pelvic area, that it is advised to go through a 6 month course of a medically induced menopause to let your body heal.

You will have wished that you fought harder from 12-21 for answers, as this level of damage could have been avoided and possibly could have still allowed for you to conceive naturally.

Don't listen to the opinions of 1 doctor and demand to see a specialist.

4. Get health insurance
Although it isn't something that you see worthwhile or value in, it is something that you are going to NEED and I mean RELY on!

See, you never thought about health insurance until you needed it (just like life insurance) and as you will have learnt you have a pre-existing condition, you will need to serve a waiting period of 12-18 months before you can claim.

Ever heard older people complain about how horrible colonoscopies are? Well trust me when I say they are! You are going to need A LOT of these and there will be a few that needed to be done urgently and requiring you to pay $5k as you are still serving your waiting period on your health insurance and the public waiting list is too long.

But there are some great perks to health insurance! Like getting your own private room where available, having your surgeon/doctor of choice, getting the TV on free of charge, Having the paper delivered each day to your room and having proceedures done when they need to be done rather then waiting. Don't forget the health insurance pays for your ambulance rides too!

Oh and don't get me started on the private hospital! Imagine a resort, but it is a hospital... seriously! The nurses are so much less stressed then over at the public hospital and are so lovely and patient. THE FOOD is something you would pay top dollar for at a restaurant. My first night I had roast duck... I had never had such a delicacy before! There were even other awesome incidentals too like FREE wifi and Austar too!

But the best part of having private health insurance is the privacy and peace of mind. You know you have your doctors who know your case and you trust with your life, but also when you have your bowel removed when you're 22 you will find it much better being in a private room then a public room with 4 other patients (including men) and not having much support.

So be sure to organise it before it was too late, as it will save you so much money too!

5. Spend more time with Dad & understand just how much he loves you
Although you speak to him everyday and are close, you will be wishing after he died that you had spent more time with him.

Be sure to tell him you are sorry for all the things you were forced to do and wished you didn't.

Make him know that you love him and just how important he is to you.

When he lectures you for stuffing up, don't take it as him thinking you are a disappointment or a failure, take it that he cares enough about you tell you that you stuffed up and listen to his advice. He will pass on many, MANY words of wisdom. Listen to him as he know's what he is talking about and isn't just saying shit for the sake of it.

When he invites you camping or to do family stuff and you decline becuase you have to work, take the time off work because those will be memories you wished you had.

Laugh at his jokes and at his quirky and often embarrasing behaviour. You will realise how much you miss his laughter, and miss him everyday after he passes away. 

Don't try and get his attention by doing things that will make him mad, and worst of all DON'T lie to him. Always be honest with him, he won't always believe it is the truth when it is, but it is so much worse when you keep things from him (like hiding a $900 fine you got and lost your license the day after you got it).

Appreciate just how much he cares about his kids and how much he is willing to help you when you need it. Appreciate that while your dream was to move to Brisbane and go to uni as soon as you graduated (so you didn't apply to the university closer to home) that your dad had other plans. When you ring to tell him you stuffed up big time and Brisbane was a mistake that you didn't get into uni, he will then tell you that he went behind your back and applied to the university closer to home and that you got a full commonwealth supported place and you start in 2 weeks. You will then realise just how much he loves and cares for you and even when he knows you are making a mistake, he still makes sure you have a plan B (even if he doesn't share that with you).

Just if you get angry with him because he won't let you go out with that boy you like (but knows he is trouble), wear makeup, or tries to be over protective - just remember that life is short and he won't always be around, so don't waste time being angry over little stuff just know he cares enough to protect you.

So younger self, while these are the 5 important messages for you I have some short/brief ones too!
* Don't speed- it isn't cool and it is embarrasing when you have no license for 6 mths and have to rely on everyone for a lift!
* Don't get into debt -  yes it is very tempting to have that new car and credit cards but trust me you will regret by 21!
* Learn to save more!
* Stop smoking - not only is it bad and expensive but it is gross. Trust me when I say you'll find other things to release your stress!
* Don't study so much - looking back 20 hours a day spent studying is just crazy! Enjoy life and enjoy having friends, they won't always be there for you, and you will wish you were less alone!
* Don't worry about trying to fit in - once school is over you won't ever see or speak to those bullies again, they are only apart of a brief period in your life!
* Do more of what makes you happy and stop trying to please everyone, you will only be left even more unhappy.

As dad always would say "Always remember Pumpkin,
that no matter what happened today the sun will come up tomorrow".

 
Posted by: Talya AT 09:33 am   |  Permalink   |  Email
Wednesday, October 29 2014

Sometimes it can be frustrating when you spring a leak (a stoma bag leak that is, not a spring onion) or when you're trying to do a bag change and your bags just won't stick!

I have 5 handy and quick tips to getting your bags to stick better and help you to prevent a leak!

1) The very first thing I do when I am about to do a bag change is to grab one of my bags (don't cut it yet if it isn't a pre-cut), fold it in half and place under your boob. No joke- this works wonders! Because the glue on the stoma bags is more stickier the warmer it gets this is a great way to warm your bag up which means make your bag more stickier.... I KNEW having huge boobs would come in handy one day hehe

If you're a guy I don't think this step ^^ will apply to you (sorry)

2) Grab a hairdryer and put the settings on a high heat and sit there for about 5 minutes heating the bag up. Make sure that you are heating up the wafer part that will stick around your stoma. You don't need a fancy hair dryer, I just bought a cheap one from a department store and it works a treat!

3) Using your adhesive remover wipes (I love my Coloplast ones) ensure that all of excess adhesive residue from your last bag change is removed.  I then using a wet washer will give the skin and area a bit of a wash (trying to not use a lot of soap as this can make bags not stick). Also make sure that the area is completely dry!

If you use Stoma adhesive powder, it is important to make sure that you wipe off any excess powder where your bag usually sticks, as this can also stop the bag from sticking. I use my skin barrier prep towlettes (like the adhesive removing ones, also coloplast) to prepare my skin for the bags and to remove any excess powder etc.

4) When I am ready to put the bag on I get both hands and kind of put them around the stoma (one on either side of the wafer plate) and press firmly and hold for a while. This adds extra (natural) heat to the bags and helps to make them a little more stickier.

5) To create some extra reinforcement of the bags I use 'banana wafers' (correctly known as elastic tape) and I use two of these to help secure the bags. One wrapping around the bottom and sides, and the other wrapping around the top and sides.

Those are my 5 quick tips to make your bags more stickier!

If you have some quick tips that you've found to make bags more stickier share them below!

Ostomistically Yours,
Talya x

 
Posted by: Talya AT 08:58 am   |  Permalink   |  Email
Sunday, October 26 2014

Last week I found out that Feeling Ostomistic had been chosen as a finalist in the 2014 BUPA blog awards under the social good section.

I have had a lot of people ask IF I won what would I plan to use the money for, or more what would I do with it.

I have plans to further my studies (currently studying a Diploma in Community Services) but I want to go on to study a Diploma in Counselling.

I want to further the support my blog offers to include niche counselling of young people living with an Ostomy or associated health issues.

I know first hand how there can be days where living with a stoma can be quite overwhelming but more so with the other health issues that goes with it.

I want to offer counselling from a supportive place that when I say "I understand", I really mean that I understand!

There is nothing more frustrating then trying to speak to a counsellor and get support and when you're talking to them they just have a look on their faces like they have no idea how it feels or how you feel as they haven't had that experience.

And that is where I want to be the point of difference!

I want you to feel supported, understood but I want you to feel empowered that none of this defines who you are.

But importantly I don't want you to feel alone!

So winning this award would mean a lot of support and awareness to those who need it most.

Please help me make this vision a reality and VOTE for Feeling Ostomistic in the SOCIAL GOOD section today!

Everyone who votes goes in the draw to win an iPad Mini too! All you have to do is enter your email, that is it!

Voting ends 7/11/14 and awards night is 14/11/14, I will keep you in the loop! 

Until then...

Ostomistically Yours,
Talya

 

Posted by: Talya AT 06:20 pm   |  Permalink   |  0 Comments  |  Email
Wednesday, October 22 2014

Last night something unexpected happened.... Don't worry it wasn't anything bad, it was actually a changing moment for me...

And it all started with two small words that have so much meaning.

Those words were "Thank you!"

I have always felt that it was my mission or 'purpose' in my life to help someone else and make a difference to someone's life.

I would spend a lot of my free time (when I wasn't at school or work) during my High Schooling years volunteering and doing charitable work which then continued on through my time at Uni when I was studying to become Nurse. I felt that maybe this was how I was going to help make a difference.

When I started Feeling Ostomistic last year it wasn't for the attention, sympathy or pity through sharing my journey and the struggles faced, but was for a way that I can help support, encourage and empower someone who needed it most.

I knew how hard it was for me (who was 22 when I had my surgery to remove my entire large bowel) to find information and support that was aimed at a younger person as everything I found was more suited to the older population or geriatric care respectively.

So I realised that if I was struggling that there was bound to be others out there struggling as well.

I knew I wanted to help create social change and awareness that bowel cancer and issues affect younger people not just older people, but more wanting to advocate and make people aware of the importance of bowel cancer screening at any age (if you are showing signs that there is something different about your bowel habits).

But importantly, I wanted to help encourange people to not be embarrased about talking with their doctors about their bowel issues- which in our society is a big issue as people are just too afraid to find out or too embarrased to talk about it.

So last night I had a friend message me telling me how grateful she was of my blog and for making her feel encouraged and supported to go to her doctor to discuss problems she has been having and putting off.

She also wanted to make sure that I knew that it is important that I continue to share my voice and awareness- that my voice is being heard and change is starting to happen.

I didn't set out to do this blog for the grattification or praise, but it really was a moment of realisation for me that I am helping people and that my message is being heard and in return helping to save a life one blog post at a time!

If you have felt supported or encouraged from reading and following Feeling Ostomistic please let me know by commenting below (you can change your name to protect your privacy if you wish).

Ostomistically Yours,
Talya

 

 
Posted by: Talya AT 08:40 am   |  Permalink   |  Email
Monday, September 29 2014

Today I went for my first ever PET scan.

Now before you ask... no it wasn't a scan for my pet, I don't even have one.

The PET of PET Scan stands for Poistron Emission Tomography.

Why was I needing this scan done?
If you have been following my story the last couple of months you may remember
me mentioning that Doctors had found a large mesenteric mass in my abdomen
and they requested I see specialists down in Sydney (600km south of where I live)
to get their opinion on what is a suspected 'Desmoid Tumor'.

I saw a specialist in Sydney in August on the 26th, and he said he needed to consult
with a multi-disciplinary team for their expertise who will meet within a fortnight from
the time of the consult.

Up until Last Tuesday I hadn't heard anything which I assumed 'no news is good news',
but my Doctor here in Coffs called me to let me know that at the first multi-disciplinary
meeting it was decided that it needed to go to an even higher meeting, where my
case was introduced and the Doctors came to a conclusion.

They thought it was best if I went for a PET scan ASAP as they think that the mass in my
abdomen could be a secondary tumor, that there could be cancer somewhere in
my body but not sure where. But also because they want to see if this mass in my
abdomen is benign or malignant and if it is a desmoid tumor they cannot biospy.

Normally I am pretty good at holding myself together and not letting things get
overwhelming or upsetting. But I was finding it so hard to not break down and
cry while on the phone to my Doctor. I was really glad I had my husband home
that day to help me deal with the news and the day ahead.

So by Wednesday I had an appointment for the following Monday Sep 29th,
at Lismore Hospital which is only a 2-3 hour drive north. I was lucky they could
fit me in so early especially as they only do the scans twice a week! And it was
more convenient for me to travel there rather then Newcastle or Sydney.

I know leading up to the scan I had no idea what to expect as I only knew two
people who had these scans being my late dad (who passed away March 2012)
and a friend I met the same age as me on a Canteen camp.

But I knew it was important if I blogged about this experience in the hopes of not
only sharing it with someone who may be wanting to know what to expect, but
more for my family and friends who are curious to know about what it was like.

What to expect when having a PET scan?

Now first things first, this scan is a non-evasive scan and doesn't hurt
(with exception of the canular)!

1) You will be advised of your fasting requirements such as the last time
you can eat or drink something, and also to advise how much water
you need to drink. It is important that you don't even chew chewing gum
as the sugar in this will effect the results of your scan.

2) When you are called through you will be asked to change into a
hospital gown with the exception of leaving on your underwear
and your pants. But you need to make sure your pants don't have
metal studs, zippers, buttons etc.
I knew my jeans had metal studs on the pockets, so I just brought a
pair of tracksuit pants with me to change into.

3) You will be weighed and your height measured to confirm the right
dosage of the radioactive glucose substance.

4) You will be ushered to a small, quiet room where there is a recliner
chair and it is here that a canula is inserted and the substance is
injected into your vein via an IV drip over 2 minutes.
This is painless and doesn't have any side effects or makes you feel
any different like what a CT contrast dye does.

5) You will be told to remain calm and relaxed over the next hour so
that your body can absorb the radioactive substance. They suggest
that you have a little nap, which I did and it went so quick.

6) Once the hour is up you are asked to go to the toilet before the
scan and then taken into the scanning room. You will be asked to
lay up on the scanner bed and instructed how to have your arms
and legs. Find a comfortable position as you will need to remain
still for around 30 minutes, which is the duration of the scan.
Surprisingly the scan was so quiet so I just had another nap.

7) After the whole body scan is complete you will be taken to
another small room where you will be brought a sandwich
and a drink and to sit for a while until instructed to leave.

So all up the process took around 2-3 hours, so just be sure to
accommodate up to 3 hours if you need to ask someone to
wait for you or to pick you up afterwards. Although you should
be able to drive yourself home if you prefer, but you would be
best to check with the Doctor or technician.

You also will be advised to avoid contact with anyone who is
pregnant, breastfeeding, a baby, child or very ill for
a few hours afterwards as you are still considered to be radioactive,
so avoid being in close proximity to anyone including hugging.
You will also be told what time you are 'radioactive until'.

So I hope that this is informative and can help you to prepare
or understand what to expect when having a PET scan.

Ostomistically Yours,
Talya x

 

 
Posted by: Talya AT 08:29 pm   |  Permalink   |  2 Comments  |  Email
Saturday, July 12 2014

There are many disabling and debilitating health conditions that are considered 'Invisible' illnesses.
Now don't take the word 'invisible' as meaning it doesn't exist.
Because they do... Trust me.

But an 'iNVISIBLE' illness is referred to an illness that you can't see with the naked eye,
most often refers to illnesses and diseases that are going on inside of your body.

SOME invisible illnesses are: 
*CANCER *ANXIETY *DEPRESSION *PTSD *CHRON'S/UC *EPILEPSY *PANCREATITIS
*ENDOMETRIOSIS *IBD *HEART DISEASE *RENAL FAILURE *ARTHRITIS *MS *MUSCULAR DYSTROPHY
*AUTISM *MIGRAINES *FIBROMYALGIA and the list goes on!

You would be surprised the amount of judgemental things I hear daily from people.
Now it isn't just STRANGERS that say this, it is FAMILY/FRIENDS too!

10 THINGS AVOID SAYING TO SOMEONE WITH AN INVISIBLE ILLNESS

​1. "But you don't look sick!"....
You tell me that I don't look sick, yet get horrible offended when I get upset at you. When you have been dealing with sickness for a while you tend to get better at hiding that you are sick... By hiding I mean putting on a brave face and smiling and pretending everything is okay.

But it is also important to keep in mind that while i don't look sick on the outside, internally I could be in agony or discomfort- quite often feels like there are hundreds of knives stabbing me internally.

2. "Must be good not to work!"....
You see, just because I currently don't work it isn't out of a choice or because I am lazy. I am far from it. I am a real honest and hardworking person who would love nothing more to be out working again. I don't currently work because a) my doctor's haven't cleared me to return to working, or b) I don't think it is fair that if I am in hospital for lengthy stays (as I often am) that it would be unjust that I be a burden on my colleagues and expect them to cover my shifts when I am sick.  

I hate that I am having to expect my husband to work so hard and that the medical bills and other expenses are piling up. I really feel bad enough about my situation without you making me feel worse. If I COULD work right now I would in a heartbeat, but most employers aren't empathetic or understanding when it comes to employees being sick- trust me!

3. "Maybe it is all in your head"....
It is funny, that although I am often seeing my Doctors or specialists (sometimes weekly) that people still think they can tell me that 'it is all in my head', despite the fact that there is factual proof that this isn't so.... I don't have an illness where I imagine a sickness or imagine that it is debilitating- I live it everyday..... Everyday I am faced with the reality of what living with these diseases has impacted on my life, my well-being, but also how I can manage day-to-day activities.

.....Now on the topic of what is in my head... I know there is certainly a brain up there, as I have seen my brain (along with millions of Australian's) when my brain surgeries were filmed on the RPA tv show.

4. "Surely it isn't that bad"....
I have had several people tell me that "surely it isn't that bad". If it wasn't that bad would I have had to have my entire colon removed at 22, would I have been put through a medically induced menopause at 21? Now I know that some think that Doctors want you to see them or have surgeries as they get rich off of sick people, but I genuinely believe my specialists and have entire trust in their care of me, that they have my best intentions at heart not their own.

Also its not an exaggeration when I say that endometriosis is a bitch! When I get my monthly visitor, guaranteed I will be in bed for days as the pain is excruciating, the nausea and vomiting is debilitating and the bleeding is so heavy that on top of my really low iron levels that it makes me so much more tired.  It also isn't an exaggeration when my Doctors are considering a full hysterectomy due to the pain and complications from my endometriosis.

5. "There are people worse off then you"....
I know there are people with much worse and debilitating conditions then mine, but saying to me that because I am feeling upset and down about everything that was going on or if I need to talk to someone about what I am going through doesn't mean that what I am going through isn't valid enough and that I don't deserve to sometimes have a bit of a down day/week... because you know what ? I do deserve to sometimes be upset because I can't always be strong, I am human, I am trying to be strong, but importantly I don't always have my shit together!

6. "If you get more exercise and lose more weight"....
I know that I am fat/overweight/obese whatever you want to call me, but I am okay with it. Not because I am lazy and don't want to exercise, but because sometimes it is really hard! When I am feeling up to exercising on days that I am feeling more 'alive' I attend a swimming/aqua aerobics class which I love! But  there are many factors that make exercising hard for me whether it be the fact that my joints since the menopause ache and my bones hurt, or that exercise induces the stabbing feeling in my stomach. I know you are reading this thinking "excuses, excuses" but I bet you didn't realise that every night I eat a chicken and salad for dinner or that I never always was the size that I am.

Before I had my brain surgery I was a normal size 14/16 and I was happy, I know I wasn't stick thin but I was happy with my curves and didn't let that define me. I spent 3 months in hospital having multiple brain surgeries with the last 2 months fighting a dealy MRSA infection that was on my brain and throughout my blood. I could have died! The only way they could fight the infection was to pump me through with high doses of steroids used to fight certain cancers which little did I know caused significant weight gain! I was discharged from hospital 40kg heavier. Can you imagine the shock when all the clothes in my suitcase were some gorgeous tight fitting skinny jeans and tops that no longer fitted. If it wasn't hard enough almost dying I had to adapt to how people were treating me.

With every new health obstacle it gets harder and harder to lose weight as the next is more debilitating then the last. But please understand I am trying to do what I can when I can. I am sure if you felt the pain of hundreds of knives stabbing your stomach you wouldn't be exercising either!

7. "Change your diet"....
If only it was as easy to just change my diet and all my health issues just vanished! Instead I would need to change my DNA as that is where my problems lie is that it is genetics that are causing the FAP. Every night I have a chicken salad for dinner and have for the last 3 years. So it isn't a matter of changing my diet and every issue will magically disappear! 

8. "You're just depressed you need to get out more!"....
As much as I hate to tell you, the reason for me being down sometimes or depressed that it has nothing to do with needing to get out more. Have you ever thought that the reason I could be feeling depressed might be that I have had an absoloutely horrible day, or I just might not be coping on that particular day?

But you also don't realise that I suffer from social anxiety that it is hard for me to want to be social or be around other people. But please don't make me feel like being I can't be upset when I don't feel I am coping.

9. "Aren't you feeling better yet?"....
If I was feeling better, wouldn't I know? Sometimes it isn't a matter of just clicking my fingers and everything will be okay. Unfortunately, when I am getting over one health issue another pops up. But what most people don't understand is that most of my conditions are chronic meaning ongoing, and as much as I wish things would get better or that I would get better it isn't reality. It is what it is and there isn't much more I can do except dealing and treating each issue and living one day at a time!

10. "You are just wanting attention/sympathy!"
Time and time again I hear people say that they feel that I am just wanting sympathy or attention... I don't want pity, sympathy or attention! I am open and tell people about what is going on so that they stop asking questions or gossip, or simply because I want to talk about things and to get them off my chest. Having an extensive illness is quite a burden most days and at times I just need someone to chat too. But I also want to help raise awareness of the health issues. If I can tell someone about what is going on with me and my experiences, maybe just maybe they will meet someone one day who too will need some help or advice.

So please think carefully next time you speak to someone living with an invisible illness.

I know a lot of the time people do generally mean well, but there are often times where what you are saying can be quite upsetting and be damaging rather than actually helping. My intention for this post wasn't to offend or upset anyone, but more to raise awareness of how hurtful words can be and to be mindful next time you think you heard of the cure for cancer and that I should go and try it... if in doubt of what to say the more respectful thing can be silence.

 
Posted by: talya AT 12:57 am   |  Permalink   |  Email
Thursday, May 29 2014

Menopause... The one thing women dread about getting older and going through 'the change of life'.

You always hear women express their feelings towards menopause and as a young women you think
"surely it isn't really that bad".

Boy was I wrong!

When I was 21 I was diagnosed with stage IV endometriosis and had surgery to remove what was found.
On my right ovary I had a 15cm round mass (an endometrioma) which was removed along with the lining of my ovary.
I also had a 7cm mass removed from my uterus along with another 5cm mass.
Through the use of lasers over 200 1- 2cm sites were excised.

I remember waking from surgery and my surgeon came to speak to me when I woke up.

He told me that in his career, my case was one of the more worse conditions he had seen, and as a result of the damage
that I would need to be placed in a medically induced menopause for 6 months to try and let my body repair.

I was prescribed 6 courses of Zoladex injections and given my first the following morning.

I had no idea what to expect!

All I kept thinking to myself was
"doubt menopause would be that bad".

Afterall I was excited to not have my period for 6 months!

Ever since my first period (was in year 5) I have had extremely bad period pain along with heavy periods.
When I was in year 7 the pain started getting that bad that I used to vommit and would curl up in a ball and just cry.
Later it became a 'norm' to get diorreah and bleeding during my period.

No one believed how bad my periods were. I kept being told to "just suck it up"
and that it was only "just period pain".

It wasn't until I was staying with a relative in grade 9 when I was up all night with vommiting and diorreah
and bad period pain, that she came and chatted to me about it.
She told me how much she suffered (even to this day) with periods.
She sympathised with me, she cried with me, but she also gave me something to help control the pain.

Due to events that happened I ended up moving in with her a couple of months afterwards, and one of the first things
we did was to go to the doctor. She was determined to get me the help that I needed with my periods
as they were just getting worse. We tried all sorts things from different types of the pill,
to specific period pain medication available over the counter.
Nothing helped!

BUT one thing doctors kept saying when we discussed endometriosis was that
"Young people don't get endometriosis".

My periods became that debilitating that I had to have time off work and school, and often I would be at work
(I was a checkout operator) and suddenly would get pain, nausea and passout.

They were never regular enough that I could 'predict' and
so many people (except for my Aunt) thought I was faking it.

When I got older, I found my periods and symptoms each month were getting worse and
I was lucky in 2011 to have found a GP that wanted to look into what was going on
and wouldn't just pass it off as 'being overweight' like many before.

He got me reffered to a specialist who listened and understood and empathised.

He told me that in 2 weeks he would book me in for a cystoscopy, hysteroscopy and laperoscopy.
He was determined to find out what was wrong.

I was so relieved when he told me I had endometriosis,
it meant years of sufferring finally had a name.

So I started my 6 months of injections of Zolodex and was happy I had no period.

But I must say I sympathise with all those who complain about menopause and how horrible it truly is!

The hot flushes were the worse!
I always felt hot and gross and would be standing in line at the supermarket and next minute I am dripping in sweat
and feeling like I am ready to just about to pass out.
It was so humiliating!

The vaginal dryness was pretty uncomfortable and at times felt like sandpaper. Was horrible!
Made sex more uncomfortable then it already was (down side to endo is painful sex).

I found there were some days where all I could do was lay in bed due to the horrid nausea.
If I ate food I would have to try so hard not to fall asleep afterwards.

The other downsides to the menopause was the weight gain, excess hair growth (now have a beard),
the headaches, moodswings, hormonal and bloating.

Gosh, I would just break down and cry at the slightest thing whether it was reading a newspaper, watching tv,
talking to someone... just anything slightly sad I was just a blubbering mess!

Although they say that it was a reversible menopause, it has been 12 months since my last injection
and I still suffer from some of the symptoms. My periods returned around 3 months after the last injection 
and have never been the same. I have spoken to my doctors and they said sometimes it effects the hormones that much
that it can sometimes still be like part of your body is still in menopause.

I still have the excessive facial hair issues, hot flushes, hormone fluctuation and nausea.

Part of me is dreading having to go through all this again,
......but for real this time!

When people learn that I went through menopause at 21 they don't believe me or that
doctors can medically induce a menopause.

Please remember zolodex and menopause affects individuals differently. Due to the pain and recovery from the surgeries
along with the medically induced menopause I had to cease working and employment. The week after I stopped working
I learnt that I was needing to have my bowel removed within the following 6 months. It was a very trying and emotional time.

Menopausally yours,
Talya xx

 
Posted by: Talya AT 12:19 am   |  Permalink   |  Email
Tuesday, May 27 2014

 

Colonoscopy: 
Is a visual examination of the colon from the cecum to the rectum
via a colonscope which requires sedation.

So you just had a visit with a colorectal specialist and he has informed you that you are needing a colonoscopy.

A colonoscopy can be used to detect a range of issues or illnesses going on in your colon. I am certain your specialist has discussed with you the importance of the proceedure and how it will happen. You won't feel any pain during the proceedure as you will be sedated. Your doctor would have told you about the special diet that you need to take, along with colon preparation as well.

In the period between 2010-2013 I have had around 10-12 colonoscopies, and I want to share with you my:

10 tips for helping prepare for a colonoscopy

And to help you be more comfortable the day before as well!

Tip #1: I think it is only fitting that this tip comes first, as from prior experience I think it is one I consider important...

DO NOT SCULL THE COLON PREP SOLUTION.

As tempting as it is to hold your nose and scull the solution (because it tastes horrid and you want it over), there are a couple of reasons why you shouldn't:
a) it will bring on the urgency of cleansing your bowel- prepare for a bit of an explosion when you reach the toilet
b) it will upset your stomach and make you feel nauseated
c) you may not actually make it to the bathroom (learnt that one the first time)

Tip #2: The day before your colonoscopy you can only eat/drink CLEAR FLUIDS.
The first time I went for my colonoscopy my dad told me to stock up on lemonade iceblocks as they are:
a) clear b) filling and c) trick your stomach into thinking it has had 'food'.
I swear by this! I also drink apple juice, soda water and mineral water too.

Tip #3: I say this with brutal honesty- DO NOT LEAVE THE HOUSE THE DAY YOU TAKE COLON PREP.
If this will be your first colonoscopy you will soon see why I reccomend staying home and close to a toilet! There will be times where you will literally be running as fast as your little legs will carry you. There may be times where you might not make it to the toilet. If like me, you would be that exhausted come night time you just sleep on the toilet. If you don't live alone, I really hope you have a second toilet as the last thing you need is someone taking their time while doing crosswords or sudoku, while you are eagerly urging them to hurry along!

Tip #4: Invest in some baby wipes or vasoline.
Now.. have you ever had a really bad case of 'the runs' and found your bottom felt like it had been burnt, & was stinging? Well imagine that, but 10x worse. Your bum will burn, it will sting and it will become more and more irritated with ever wipe. I found that baby wipes and vasoline helps- It will still sting but not as much.

Tip #5: Keep an eye on your circulation in your legs.
You might think this is odd, but you will be sitting (often rather uncomfortably) for many, many hours. So it is really important that you find ways that can help your circulation and blood flow to your legs. I found I would often get pins and needles if I had been sitting for too long. So I invested in a bath step (a toddler one is perfect) to keep my legs slightly elevated and not so much dangling. If possible look into replacing your toilet seat with a more cushioning or padding seat (your buttocks/thighs will thank you), along with not crossing your feet/legs while seated. And if possible stand up or shake your legs every now and then to keep them moving and blood circulating. 

Tip #6: Try and find something to entertain you.
I found that it made the time go quicker if I set up a little table/bench in front of the toilet with my laptop so I could watch some tv shows or DVD's that I had. Also if you are into reading but haven't "had time to read" lately, this is the perfect opportunity. Grab that book and prepare to immerse yourself into the story and escape the 'shitty' situation you are in. Pun intended!

Tip #7: Prepare to sleep on the toilet
I know I briefly mentioned this above ^ but you will be that exhausted andso 'over it' that you will just want to sleep... whilist still sitting on the toilet. This might sound so strange, but in all the times that I have had a colonoscopy, I found that I got more sleep the night before if I just propped a pillow up beside me and slept. Think of it like sleeping in the car while travelling.. just you are on your toilet. 

Tip #8: Keep your fluids up!
When you are having a colonoscopy, you lose a lot of fluids and can become dehydrated very quickly! It is really important to keep up your water intake, I suggest getting a water bottle and just drink from it constantly. Also don't just start drinking plenty of the fluids the day before, start many days before and also having hydrolyte iceypoles, or drinks like gatorade and poweraide can give you a lot of the electrolytes needed.
NB: That the two days prior to your scope you only have clear fluids and cease drinking any drinks with colours.
*But as always, please consult your doctor, nurse or health physician on what is best for you and your situation.*

Tip #9: On the day wear baggy, comfy and loose fitting clothing.
You will want to thank me afterwards for this tip. After your colonoscopy often you feel so bloated and blegh that the last thing you want is clothes that feel too tight or trying to do up buttons (when you still feel groggy). Also remember to take a jumper, often when sitting in a hospital it can be quite chilly, and when you finish and are sitting up eating something (often for a while before being discharged) you may get cold.

Tip #10: Organise at least the day before and day afterwards off work.
The day before the proceedure is when you need to take your colon prep, and needless to say you really don't want to be at work on this day as you will literally be on the toilet for most of it. As for the day afterwards; you shouldn't drive, operate machinery or make important decisions as you are still considered to be under the effects of anaesthetic which can often cloud judgement, or make your head a bit 'foggy'.

*Different people react differently to anaesthetic, so important to follow any instructions provided by your doctor*
It is best to arrange to have someone collect you after your proceedure,and at least have someone with you overnight.

Now, I know that no one finds colonoscopies especially the preparation fun or comfortable, but I hope that these tips and advice can help you feel more comfortable.

I have offered the advice above based on my own experiences. Your own experience might be different or could
be similar. If you have any questions or concerns it is best to consult your doctor, nurse or health physician.

 

 
Posted by: Talya AT 03:55 am   |  Permalink   |  2 Comments  |  Email
Monday, May 05 2014

 When your BAG gets WET do you find it FRUSTRATING with how long it takes to dry?

Well I have found the PERFECT solution for you!

I used to like swimming and enjoying nice relaxing spa baths, but always found when my bag got wet
that it would take FOREVER to dry and no matter how much I patted towel dried, my bag just wouldn't dry!

I often would be sitting there for HOURS patting my bag dry and would become so frustrated and
would walk around with a small towel wrapped around my bag/stomach because I just gave up!

Now I know what you are thinking 'Why don't you just change your bag?'.

Well good question BUT if I changed my bag EVERYTIME I showered, I would soon quickly run out of supplies.

Well my conundrum and search for a solution happened recently when I started doing 'Met Aqua'
which is similar to water aerobics but much more fun!

So after my first class I found that although the rest of me was dry I had to drive home from the
class with all this towel padding so my clothes wouldn't get wet...

Well no matter what I tried I just couldn't find a fast drying solution...

That was until I came across an amazing, innovative and eco friendly product
that is designed right here in Australia!

Introducing the Wovii- The Super absorbent
and fast drying towel!

I took my wovii along to my swim class today and within seconds of drying my skin
was dry and I wrapped my hair (which is pretty thick) in the towel for a minute or so
which was also dry AND best thing of all...
THE TOWEL WAS STILL DRY!! 

Normally towels are so heavy when they are wet
but this towel is so absorbent and so light!

When I got home I got the wovii and wrapped it around my stoma bag for around 5 minutes
and it is completely dry! Even the adhesive banana wafers were dry too!

I am so happy to have found this amazing towel and it seriously will make my life
and living with an ileostomy so much better!

I purchased a Wovii taster bundle to get the different sizes.
The hand towel I used to dry my stoma bag
.

Their colours are so beautiful! I already have my next colour purchase in mind!

IF your order is over $50 your post is FREE (Australia Wide) otherwise it is a low price of $4.95!

Ostomistically Yours,
Talya xx

*Feeling Ostomistic is not paid for reviews, and often will offer reviews on products I have purchased if I feel strongly about the product and of the use that it has. If I publish a review it would only ever be a positive review about why I love and personally reccomend the product. In some cases products are received in exchange for a review, but mostly I have purchased the products*

 

 

 

 
Posted by: Talya AT 11:41 pm   |  Permalink   |  Email
Wednesday, April 02 2014

There are times where more often than not, that I get overwhelmed when changing my bag and afterwards get really clammy and feel like I might pass out. It isn't so much to do with the stench but more it just can get too much to deal with and gets a bit emotional.

But I have been trying a new tactic the last couple of months and after just finishing a bag change I feel more at ease.

I will share my new tactic with you.

I step out of the shower and dry myself, then I go and sit on the toilet (Not that I go to the toilet but more its just personally more comfortable to change my bag seated).

Before I start my bag change prep I turn my iphone music on shuffle and have music playing.

I have always been a person who from a very young age has loved music and can relate songs to feelings or times in my life but more I grew up listening to music and it is something I love, especially belting out a tune or two.

So after I turn my music on I get myself set up which involves:
*Filling a small plastic container with fresh water
*Getting an empty plastic bag (without holes) and tucking it under my stomach and then tucking my bag into it. Trust me it makes things so much easier and less messy!
*I then begin to cut the supplies needed for the bag change, so cutting my bag to size (I am lucky that my bag size hasn't changed size since June 2013) and then I cut the chux cleaning wipes into thin usable sized pieces and put in the water container.
*I set out beside me my stoma adhesive remover wipes, skin barrier wipes, mouldable ring, stoma adhesive powder, my bag and also banana wafers.

I then start removing my bag using the adhesive removing wipes and without realising I am wiping to the beat of the music and whistling the tune.

So next thing you know my bag is removed, My stoma is clean and my stoma is prepped for a new bag.

Usually takes around 3 full length songs all up to complete, but I don't notice how long it has taken or consciously aware of what I am doing as I am relaxed and at ease.

Tonight the song that was playing while I was changing my bag was 'Carry On' by Fun (which I really love) and I was listening to the lyrics and it was pretty much summing up how I have been feeling the last couple of days, and when the song was over it had me in a much better mindset then I have been for days.

The lyrics that really struck a chord were:

"Cause we are 
We are shining stars
We are invincible
We are who we are
On our darkest day
When we're miles away
So we'll come, we will find our way home

If you're lost and alone
Or you're sinking like a stone
Carry on
May your past be the sound of your feet upon the ground and
Carry on"

Listening to these lyrics really have me remembering that I am a fighter, that I have been through the worst of it that I need to pick myself up and just simply carry on. That no matter how hard times seem and how bad some days are just need to pick myself up and carry on. The past is the past and there is no point dwelling on it as I believe our past helps shapes who we are.

So on our darkest days we will find our way and we will get through this.

Ostomistically Yours,
Talya xx

 

Posted by: Talya AT 10:38 am   |  Permalink   |  0 Comments  |  Email
Tuesday, April 01 2014

You know what I am really sick and tired of? People who are judgemental and quick to judge to judge me.

Today I went along with my husband who was fixing a friends computer and I met his new partner as his late wife passed about a year ago.

We were sitting there talking (well more her whinging and complaining about everything) and I was trying to be supportive and engaging in conversation. Well that was until she started with her judgemental banter.

At first she started talking about 'boat people' and how she claimed they come to Australia illegally and get more money, more entitlements and benefits than 'Australians' more so pensioners.

She went on about how Pensioners are living under the poverty line and how illegal immigrants and even 'young people like you' don't work yet get more money than pensioners.

She went onto say how she feels she is being punished by centrelink for having a partner and assests and how she is fed up of being the victim of 'poverty'.

So thats when I piped up and quite frank couldn't bite my tongue much longer.

I asked her what evidence she had that illegal immigrants get more money than Australians? She said 'it is just what I have heard'.

I then asked her what she meant by her comment 'people like you' who don't work. She said that the younger generation, like myself have no work ethic and just choose to stay home at the expense of tax payers and as she knew I wasn't working that she assumed that was what I did.

I was quite angry at this point as one thing that frustrates me more is people who don't know me decide to judge me.

I said to her "I don't work out of choice or because I am lazy but because I am unwell." When I told her that I had my bowel removed last year due to bowel cancer and before that had to stop working as the medically induced menopause I was under made me too ill.

I told her that I have held a job since I was 14 and worked fulltime up until my health forced to me stop.

All she said was 'oh, I just assumed you wanted to stay home as I knew your husband worked'.

I told her that if I could have a conventional job I would, that I don't choose to be sick and I work my ass off in any given job.

There was no apology, there was no empathy.

Mind you I do dress nicely, we have a nice car and I have nice jewellery. But these are all things that my husband and I have worked hard for to have and things I had before I stopped working.

I always love the quote 'You should never assume. It makes an ass out of you and me'.

You should never judge someone and there is a saying that:

"Until you have walked a mile in someones shoes

you should never judge the path someone has been on".

Although someone looks normal or healthy you should never assume there is nothing wrong with them. Most illnesses are invisible to the naked eye meaning you can't see what illness and disease someone has on the inside by looking at them. As most people I know who are sick just grin, bear a fake smile and to the unknown looks like everything is A.O.K.

 

 
Posted by: talya AT 08:30 am   |  Permalink   |  Email
Monday, March 17 2014

There have been many things I have had to do for the first time since having my stoma, and some are things I thought I wouldn't be able to do.

I had heard from other ostomy members in the past year that they can no longer go swimming as their bags just fall off.

So you can imagine hearing (well reading since it was online) just how humiliating it could be.

Here in Australia we are blessed with great temperatures all year round and some of the most beautiful beaches and swimming places in the world, especially here in Coffs Harbour.

So imagine my upset when I thought I would never be able to go swimming again in public or in company of family or friends.

The summer just passed would have to have been one of our hottest summers ever and boy did I feel so alone!

My husband and family would spend days/afternoons at the beach or would go and visit family who had pools and while everyone was having fun and enjoying themselves, I was sitting on the poolside faking a smile that I was enjoying watching everyone have fun.

But the truth was I wasn't. I felt so alone and so excluded that I decided I wouldn't go along to any family functions if they involved being at the beach/pool as I just felt like I didn't belong.

Although people were quick to judge and ask if the reason I wasn't swimming was because I was fat and embarrassed with some answering "well.. just fix it".

But I would just hold my head high and say something along the lines of "I can't swim with my ileostomy". No one ever asks why, thankfully it saved me embarrassingly having to say I was worried my bag would fall off and output would go everywhere. I know it sounds graphic and gross but thats how I feel sometimes.

Well...

Last week I went away for a few days with my husband and we stayed at the Nambucca River Tourist Park. We needed a break and the last holiday together was our honeymoon in 2011.. so it was well over due.

Being mid-week in middle of March there wasn't many people staying but more the pool wasn't crowded.

I decided I would give swimming with a stoma a try, since after all we were on holidays and the pool looked so refreshing.

I did the 'get into the swimsuit' dance and made sure my bag was tucked in securely and wondered on down to the pool.

I was so anxious and nervous that my bag would fall off and it would be a disaster but much to my surprise it wasn't!

I was swimming around in the pool for over an hour and just relaxing with my husband.

He commented that he hadn't seen me so happy and smiling and having a good time in forever, that he had forgotten what happy Talya looked like.

In that hour I totally forgot that I had a stoma and was enjoying the first time in 2 years that I had been swimming.

We went back to the villa we were staying in.

I was going to change my bag but as I was going swimming again tomorrow I decided not too as once it had tried it was basically intact!

In fact even 2 days after my first time swimming when I did do the bag change (knew I wasn't planning on doing more swimming as we were leaving the following morning) it was still an effort to get the bag off, that it had that much tack to it.

So I don't know why people were saying that their bags just fall off when they were swimming, and it certainly was a lesson learnt that I should always do things first and try myself before taking the word and advice off of someone else.

Swimming Ostomistically,
Talya xx

 

Posted by: Talya AT 06:24 am   |  Permalink   |  0 Comments  |  Email
Friday, February 28 2014

"Don't be shy about asking for help.
It doesn't mean that you are weak,
It means that you are wise"

I was raised and taught to be self reliant and to never ask for help. So it has been something that I thought would make me appear weak and pathetic that I was better than someone who asks for help.

I realised yesterday that I have been wrong for many years.

Even when I went through my brain surgery, my endometriosis surgery, the menopause then my bowel removal surgery I never asked for help. Call it stoicism or stubborness but I call it being weak.

There were times where I needed help but just never felt right asking for help.

I say it was being weak because it takes someone strong to admit defeat and ask for help.

But yesterday I did ask for help and it felt great!

I had been studying for the last month to be a social worker doing a Certificate IV at TAFE and have been too embarrased to talk to someone or ask for help, and was ready to drop out.

I wasn't asking help academically as I am smart and capable of studying, it was just being less than a year after my surgery I thought I was ready and realised I wasn't mentally, physically and spiritually ready.

There was a whole week I had to have off because of the Endometriosis, then there was a couple of days I was in hospital because of my pancreatitis and my pancreas flaring up.

I decided that before dropping out I would meet with the course co-ordinator to discuss my options whether there was a part time option I could do a couple of days a week rather than fulltime or if there was an at home option I could do.

Well yesterday I met with the co-ordinator and told her about my health issues and that I didn't feel okay to do fulltime.

I spoke to her about how I had time off because of my endometriosis, and some days because of my pancreas. I also told her about my social anxiety, depression and that I didn't feel comfortable being in the class with 40 students as I felt so judged.

I told her about how the desks in some of the rooms are at the height of my stoma and for 9 hours it cuts in and is rather painful and also how the chairs in some classrooms cut the circulation to my legs.

She told me that I should be in the Diploma class and will work towards getting me in the class which has only 6 students in it. She also said I could do two days a week and would take 18 months (and can pick the workload up as I feel better). Apparantly I could get RPL for some subjects as I had completed similar Nursing subjects.

But what was one of the things she talked about that I wasn't aware existed was disability support services. She said she would like to see them involved which under their funding would mean having a one on one tutor for the work that I miss when I am sick, especially when my endometriosis takes a week of being house bound. Also through the disability support services that I would be entitled to having furniture in the room that is accomodating for my physical  health conditions such as a desk that is the right height or a better chair.

Before I left she said to me that she could tell it took a lot of strength to ask for help and that by asking for help and arranging the meeting it showed that I was in fact strong and that there is support there for me.

I left feeling confident and didn't feel weak at all for asking for help.

I realised if you don't ask for help you don't know how much better things could have been.

If I didn't take the courage and ask for help I would have dropped out or went to class being in pain because of the desks and chairs.

So it is okay to ask for help and get the support you need!

Talya xx

Posted by: Talya AT 10:38 am   |  Permalink   |  0 Comments  |  Email
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~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

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Talya Goding - Feeling Ostomistic   talya@feelingostomistic.com.au  |  0447 426 860

Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.

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