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Feeling Ostomistic
Thursday, October 04 2018

Trigger warning: Talks of mental health, vulnerability

You: Hi!

            Me: Hi.

You: How are you?

            Me: Fine.

You: Ok. What's up for today?

            Me: ...

- - - - - - - - - - - - - - - - - - -

I'm sure you would agree that this is, the normal greeting and conversation you would have with most people throughout your day. What purpose does it serve when it is offered by rote, and from both parties? 

There are times when the question might be just a little different and if you stop to think about your response you can create change. Observe.

You: Hi!

               Me: Hi.

Y: How are you?

               Me: Fine.

Y: Hmm... Do you want to talk?

               Me: Umm...

- - - - - - - - - - - - - - - - - - - 
This is when a life can change, your life, and it's totally in your control.

Hi everyone this is Russell, the Ostomistic Husband.

Recently, I had a bit of a breakdown at work. I got there to work okay, but then things just got just a bit too much for me. Luckily, we were made aware that there is easy access to a counselling service available to staff, through our EAP, so I had to sort of bite down on my pride and ask for help.... finally!

This was hard, but the hardest part of the day came next. 

Next, was the call to the counselling service which led to even more of a breakdown, so obviously there was more to it than just a momentary lapse in willpower. Just talking to them about why I was feeling so teary led to finding I was truly angry on the inside, and I realised it was about time that I started opening up for real and sharing these feelings with someone before they became more harmful…. If not only to myself but to others too, and its the least I want.

The tears were because I was really worried about Talya’s declining health; your best friend dying before your eyes, is enough to jerk a tear from even the most hardened macho jerk. I'd gotten to a point where I had to really start opening myself up to someone and letting them in. 

That hurt me because Talya is the most supportive and talkative person I know, yet, I was not letting her in. I know she only wants to get inside my mind further and help me work through this, but I think that I can’t talk to her about how I feel because that would not be me being strong for her. I also know that Talya doesn’t tell me how much pain she’s in all the time because that’s her being strong for me. 

I am so tired of us pushing against each other when we really should be pulling each other closer, so we can rely on each other‘s strength to be able to help us in our time of perceived weakness. The time is now.

The anger itself, was mostly a due to the fact that I can't control everything. I was finding that the more stressed I was getting the more time I'd have to take off work. Missing out on income didn’t help things, we would have to tighten the purse-strings at home for the following weeks as only small paychecks came in. That made things even more stressful so on spiralled everything down towards chaos and I thought, "Enough is enough! I have to man up. I have to deal with what’s going on inside, uncomfortable as it is I must move forward"

I have autism, so it’s hard for me to talk about feelings that I don't fully understand. But, I have to find a way of communicating my internal workings to someone so that they might be able to give me some additional tools to better deal with those feelings. I don’t generally feel emotions all the time, and when I do get them they are usually overwhelming and too powerful and it scares me. 

Unlike most people, I didn't get to learn how to deal with those feelings, in their varying degrees, when I was younger. So when I get some hot emotion it’s just like a huge slap in the face and I don’t know what to do. Actually I do know what to do; I do what most people in my position do, and that is retreat

So usually I retreat inside myself rather than looking for outside help. I think it best to stop talking, I just want to be alone, I just want to suppress those feelings and hope that in time they go away. I need to learn to recognise there are times that I can self heal and there are times that I require external forces to help me to heal.

What I'd been doing up to now was no longer working, so I had to make a change, it was only inevitable. I think that having this counselling service available to me is a lifeline that has been there for me for years, had I just opened my eyes and pride to the service. I know it is going to be a huge benefit to me. I may have the secrets of the universe poured into my open and receptive mind or I may only learn relaxation techniques to help deal with my grief, not just loss but the anticipatory grief too. 

Either way I will be in a better place than before simply because I answered a question posed to me in simple conversation honestly, not automatically.

So basically my message here is if you need help ask for it. If you can’t ask the people that are closest to you then for the sake of your sanity and health ask somebody else. 

Just do yourself a favour and talk to someone, even if you do all the talking and you realise what you need to do without them saying a word. The fact that they’re there means you are not alone and that you’ve opened up to them means you are able to start healing.

I just want all the blokes out there who are carers to someone who is chronically or terminally unwell, that I see you, that I am you and that you are not alone in this brother. We are the forgotten brotherhood in this story but if anything we should rely on each other.

Let’s remove the stigma that it isn’t the blokey thing to speak up about our feelings, but we shouldn’t feel ashamed for when we do cry, it is better than bottling it all in and an avalanche of problems emerging.

Fellas, we need to be the best parts of ourselves so we can be the champions our women need us to be so lets make a pact that we will not go through this alone anymore. Yes, it isn’t us who are sick but we are the ones who are here holding their hand when they are crying, comforting them in their times of need, but we keep neglecting that this is all taking a toll on us too.

The pain at the thought of losing my beautiful wife is all to hard and real but I know I am not the only partner or husband out there who is feeling this anger and loss.

How about I start up a group called "The Ostomistic Husband brotherhood", where it is a fb group you’re welcome to join and share in the times you are struggling and need a little clarity or just need someone who gets it to know you aren’t alone, I won't be available to offer advice or act as a counsellor but should you need somehwere to ask for questions or need a safe space to open up, this will be it.

If you would find this group valuable comment yes under this blog. It is a safe space, men or partners or carers of someone ill or terminal.

I know there isn’t much support for the men and the carers but lets be in that change tonight.

It is only one day at a time that is given, but lets use that day to try and be the change we wish to see in the world.

Please don’t forget you’re not alone, I am you, I see you, I feel you.

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. 

 

Posted by: The Ostomistic Husband AT 07:46 am   |  Permalink   |  Email
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
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
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. 

☟☟☟☟☟☟

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!

☟☟☟☟☟☟

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

☟☟☟☟☟☟

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
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 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
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
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
Wednesday, October 04 2017

“Be the change you wish to see in the world”

– Gandhi

We all know that at some point our lives will end, but what we do in our life and how we live could be a legacy that we are leaving that would continue to live on well after we have died.

It is hard at times knowing that my end is coming, given my terminal prognosis and that I am living with the knowledge that I could have 6-12months. I do know that a year ago I didn't think I would still be here, but I am. So I am making the most of every single day.

However, leaving a legacy is at the forefront of my mind.

Everyday I wonder: "will I be forgotten?"
Every time I see my nephew who barely knows me, I wonder: "will he live life not knowing who I am?"
Everyday I wonder: "was there some lesson learned from all this?"

I have so many thoughts racing through my mind every minute of the day, these are just some.

One thing that I worry though is if my life meant anything or if I mattered... it might sound like a strange thing to think about or it might sound like a self-centred narcissistic thing, but it is hard somedays wondering "why me?"

So leaving a legacy and living a life that I am truly proud of is something of importance to me

☟ ☟ ☟ ☟☟ ☟ ☟ ☟

One thing that I have known and believed since I was a teenager was that I had a purpose in life and that was: "to make a difference or to change one person's life", so I have tried to live life with this desire to help behind every action - including my blog and magazine.

I was pretty excited to have been asked by Share the Dignity to write about legacies and living a life with a purpose. This is a piece I offered up as a volunteer contribution (I was not paid or incentivised in any way), this is a charity I have been passionate about supporting for the last couple of years and one that I know how important/needed their work is.

If you would like to read my article click here. (Feel free to leave a comment if it has helped you or if you liked it)

If you would like to find out more about Share the Dignity, click here.

Share the Dignity have their annual It's in the bag campaign coming up where people are asked to donate a handbag or backpack that is in good condition and fill it with items such as pads, tampons, toiletries and more. To learn more click here...

Being a Volunteer, despite being terminally ill:
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Last year I did two backpacks for teenage girls and filled with items I had collected since the Xmas prior. To find out about how I put together 2 bags on a budget, click here.


The bag and all the contents that surprisingly just managed to fit

I decided to sign up as a volunteer and collect the bags and deliver to the respective charities in the area. At one point I had over 300 handbags in my house. Two guest bedrooms were chock-a-block full of handbags and backpacks and there were a trail from the front door leading through the house!

It was an incredible experience and very overwhelming, only that I struggled with energy and pain and couldn't carry much so Russ stepped up for me and helped to deliver everything. Russ also helped me to check each bag for all the essentials and make sure that each bag had pads etc.

I was pretty proud of the work from our community.

Russ and I were delivering bags to a youth refuge and the owner/manager was in tears. One of the girls came out and helped Russ and I carry the bags and she said: " Thank you for doing this, you have no idea how much it means to me to know that strangers do care, that someone believes in me".

Another charity we were delivering to (was our 2nd delivery there that day as the car only fits so many bags) came running out of the charity as she had just received her bag and she hugged me and was crying and said "this were the best gift she had ever received". 

I am so happy that an incredible organisation that is Share the Dignity exists, I wish I could have done more to help but I donate pads when I can to their April and August drives and the #itsinthebag. I love that Russ got involved and was a champ in helping me last year, sadly I am not in good enough health to volunteer for a second year but I am trying my best to get a bag together when I can.

I know there were times in my life where pads were a luxury and it meant going without food, it is no exaggeration at all, I am not ashamed of that point in my life I was simply trying my best, but do consider in your next grocery shop to grab a packet of pads/tampons and keep aside for the #itsinthebag campaign, even if you can't afford to do a bag but can donate pads that would be incredibly appreciated and it does make a difference.

If you were interested in volunteering for the it's in the bag campaigns click here, it truly was a hard yet rewarding experience. Or if you can't collect the bags consider offering your workplace as a collection point!

There are always opportunities all around us to help make a difference to someone else's life.

I know that even if you think it is a small act of kindness and that it wouldn't be noticed, it could in fact be a huge thing to that person and be the reason that hope is restored.

Posted by: Talya AT 08:05 pm   |  Permalink   |  0 Comments  |  Email
Wednesday, October 04 2017

In Early December 2015, I was 2 months into my chemo plan of weekly treatments and was rather unwell with the chemo side of things and was in hospital rather ill with an infected and dying tumour that saw me in hospital for the weeks and months to come.

It was around this time that I learned of the Share the Dignity #itsinthebag campaign, I think I saw it on TV or on Facebook, I tried to organise what I could for a bag. I didn't have much time or energy, so I did the best I could and sent Russ to the shops with a shopping list of things to get for the bag.

I wished I had of known earlier about the campaign and I would have been super organised, so I vowed the next year to start early and shop throughout the year when things were on sale and hoped to try and do at least 2 bags by being organised and nabbing great deals.

So the new year came and true to my word, I started getting organised.

To give and receive a #itsinthebag gift is something that can help improve the lives of a woman who is doing it tough. I have heard stories of how they got a handbag and it helped them to look and feel more confident/professional when going for jobs, I heard from teenagers who escaped a violent home situation and are in the foster care system and a new backpack is a luxury and having someone believe in helping them through school made them feel loved and worthy.... each of the women who receive a bag from you have their own incredible stories, and sometimes they need to be reminded of how incredible they are.

Some tips before you start your bag:
* Consider adding in a box of snap lock bags into your finished bag, this will help to keep opened liquids such as shampoos or body wash to not leak and spoil the bag.... to start with put your containers in a snap lock bag, even though it is new and unopened it doesn't take much to bump the lid. I found a couple of bags last year had this happen... it will save your well thought out gift too
* Consider adding in something for her to feel pampered or relaxed it could be a face mask, perfume or a candle, jewellery, a book, an eye mask, colouring in books.
* Some cheap thongs or flip flops for $2 are a great idea
* Consider a little something extra like a gift be it a gift card for coles to buy food, or to a clothing store so she could buy herself something new, even something like sunglasses or a scarf or jewellery is a nice gift to receive
* Pop in a Xmas card or a little note with some well wishes and thoughts
* If your bag is for a teen or young adult consider wrapping yellow ribbon on the bag handle so charities and organisers know who the bag is for
* If you have items that would be helpful for a new mum, consider popping them in to a bag as well, I saw quite a few bags last year filled with breast pads
* P.S. If you're worried about everything fitting or falling out, consider purchasing one of Share the Dignity's Bag protector, which is a drawstring bag that also doubles as a laundry bag or a shopping bag too!
 

Here is how I managed to organise a bag on a budget!

Best of all I were able to organise not just 1 but 2 bags filled with items following these methods.

#1. Write it all down:
Given I had chemo brain and was rather forgettful, I knew the first and most important step was to write everything down! First I wrote it out as a list; then I transferred this data into a spreadsheet (or even a table will do fine) and added in fields or columns for Quantity, price, date purchased, date received (if online shopping) and a tick box field for when items were packed into the bag.

I know it might sound over the top to do things this way, but this is how I have organised present buying for years and it also means I am accountable for my purchases.

You would be surprised how many times I have purchased something more than once because I forgot about it.... even though it has been a year since my chemo finished I still have a rather frazzled brain, so lists and spreadsheets helps me to feel in control of my memory.

#2. Go through your own cupboards:
Now that you have your list, go through your own bathroom cupboards or your unwanted gifts and see what you have that would help you save. I used to receive BellaBox, which is a monthly subscription for makeup/cosmetics/toiletries and I used to put all the items into a container.

NB: Remembering ALL items toiletries, makeup etc needs to be unused or unopened for sanitary reasons.

I found some hair dye boxes left over from when I dyed Russ' hair, some perfume sets I never used, some makeup that were unopened, spare toothbrushes and I also divided the contents of the container of cosmetics I received from BellaBox into two piles.

Having a chunk of things already meant I could save costs and could instead buy something else.

#3. Sales, Sales, Sales:
Almost as much as I love shopping is my LOVE for a great bargain!

I start my Xmas shopping usually just after Xmas and take advantage of Boxing Day/Stocktake sales. I did this too when it came to my #itsinthebag planning and by having the best part of a year to shop and know what I was looking for, it helped me to nab some great buys at times.

I also take advantage of Click Frenzy deals, if you haven't heard of click frenzy it is this one day where sites offer crazy sales that are known for crashing the internet, it really is a clicking frenzy. I regularly scope out sites/stores like catch.com.au (formerly catch of the day), ozsale, kmart, reject shops as well as google.

I purchased a Roxy wallet that normally cost $20 for $5, so I grabbed 2. I found the eye masks (Kmart now have a range for $2) at Typo (with the help of a 50% off coupon) for $1.50, the beanie was from cotton on for 50c, as well as the notebooks. The backpacks were half price too. I got quality pretty design umbrellas on sale from Umbrellas & Parosols for around $6.95 on clearance too one was a leopard print.

Catch.com.au have 'club catch' where you receive shipping discounts as well as member only offers, sometimes there is ridiculously cheap priced offers but I find grocery store items like toiletries are really cheap to buy from here and are often a bulk buy too.

#4. Bulk buys and value for your dollar:
I found a lot of items I purchased were cheaper if purchased as 2 or in a pack/bulk. I found it was more value for my dollar and it meant that not only could I fill 2 bags but I also have a cupboard that is full of toiletries for guests, so it saved money and meant my dollar went further.

Say a pack of Pads were 1/2 price, it means if you purchased 2 packs that it would have cost the same as 1 pack would have, therefore doubling your price. Currently on Catch, they have a 6 pack of mesh bath sponges for $4.98 so 83c each.

Another example:
I purchased a 3 pack of good brand/quality hair brushes for $5! The brush for one on it's own were $10! 
I purchased my Aeroguard from Catch.com.au it was cheaper to buy a 3 pack at $10.47.
Roll on deoderant was a 12 pack for $10 from Ozsale.
Maybelline mascara and eyeliner packs 2 for $10 from Catch.

Just keep an eye out in catologues or online for good special buys, there really is great value to be found if you shop around and compare.

#5. Afterpay makes bigger cost items more affordable:
Last year I knew the biggest cost of doing the #itsinthebag bags were that I didn't have any backpacks or handbags myself that were in good enough condition that were gift worthy, the zips were broken and the bag were dirty - knowing this was a gift to lift someone up I didn't want to ruin this by her feeling disheartened.

I chose to organise my gifts for teenage girls, girls who are doing it tough. I knew a backpack would be great for school use as well as if they worked.

I took advantage of click frenzy sales half price or even less and grabbed 2 backpacks and put them on afterpay, which meant that I could break the repayments up over 8 weeks, which made it a little more affordable as well as not missing out on the sale.

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I really hope that these tips help you when it comes to organising your bag for the #itsinthebag campaign, just over a month before the collection period starts. Don't stress too much about how much or how little you put in, it isn't a competition and as long as you include the essentials such as Pads/Tampons, toiletries and the bag - then you are on your way to giving a woman the greatest gift this Xmas.

Last year my husband and I collected bags in our area and delivered to local charities who distributed them. This was such a rewarding experience and at one point there were over 300 bags sitting in my house!! The emotions felt when seeing each bag that had so lovingly been put together was truly incredible. I wrote about this experience here.

Everyone deserves some magic and kindness at Xmas.

Do you have friends who are doing a bag this year too? Why not arrange a date where they bring their bags and contents and you all sit around together and complete the bags. You could have wine and nibbles too, I am sure it would be a lovely and rewarding experience when shared with your best mates too!

Or if you can't put together a whole bag yourself, ask a friend if they wanted to do a bag with you and you could share the costs of creating it. She might even have a bag for you to use too! It is a perfect experience to share.

Posted by: Talya AT 09:30 am   |  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
Tuesday, June 13 2017

 

“Life is 10% of what happens to us and 90% how we react to it” 
- Dennis P. Kimbro

Facebook memories can sometimes be a double edged sword. On one side it shows you the silly and mundane status updates that have you questioning what on earth you were thinking way back when. Then there are the moments that your life changed in an instant in what feels like a lifetime ago, but was in fact a year to date. It has the power of instilling those emotions you felt at that time and can feel like a sharp stab at one’s own heart.

Sometimes it can be bittersweet and reminds me of the little ‘wins’ in life: like the time my husband got his P’s after 20 years as a learner driver and I felt immense pride for him but cried tears of relief that I now can take a step back and not be the sole driver; or that time that I drove a 4 hour round trip to spend Good Friday with my family (having had chemo the day prior) and felt so sick, but I was able to hold my nephew for the first time since his birth and he smiled and laughed with me and in that moment I felt an overwhelming sense of love and happiness, as if all is right in the world, for that boy has the most infectious smile that makes you feel so happy.

1 year = 12 months = 365 days = too many minutes and seconds to be happy

Today’s memory however, was that it was 12 months to the day that I was told chemotherapy was stopped, that I had exhausted all other options and was admitted to hospital under palliative care… I was given 12 months to live.

I remember that day clearly, I had turned up to my chemo appointment thinking it was a normal chemo day. I drove myself to the hospital and had expected to drive myself home; instead I called hubby and told him I needed him.

I remember feeling so terrified, I was scared now having been given a timeframe and I didn’t know what to make of any of it. What if I did life wrong, what or how was the best way to spend each minute of the day, was there even a right way? I didn't know what to do, I just knew I wasn't done trying just yet.

But amongst all the fear felt, I also felt so much guilt. I felt that I had failed my husband, my family, my friends and myself.

Most of all I wasn’t ready for the end.

I remember crying so much that day just being held and consoled by my husband, we cried together and despite no words being spoken we knew what the other was feeling.

So I started writing my bucket list and planning how I wanted to spend the next year, particularly, my final moments. I began organising my funeral and how I wanted my life to be celebrated. I tried to include my loved ones in organising/talking about my funeral and joining me on bucketlist experiences in the hopes that it helped them somehow.

But one thing I knew for sure, was that I was determined to spend the next year living life as fiercely and to the fullest as possible. 

Choosing my legacy and how I want people to think of me:

I wanted people to remember me not for the hardships I faced but for how I chose to face life, I wanted people to not pity me but to think “hey that is one strong, badass and positive chick”. I didn’t want the next 12 months of health issues/decline and struggles to define me, I was determined to try and help others.

I feel like the last 12 months have been incredibly exhausting, I feel like not only have I struggled with daily challenges but that I also have lived the most I possibly could have too.

In the face of adversity and a time I should have been selfishly focusing on myself, I started a magazine for other young people with a stoma that has been well received all round but also what I hope will be my legacy.

But my determination to try and help others didn’t end there:

I have tried to empower people to make better choices through learning from my mistakes, I have tried to challenge people to think about how they talk to or treat someone who is chronically or terminally unwell, I have tried to help others feel less alone in sharing my story openly and I have tried to encourage others to live their life as they see fit.

The last couple of weeks I have been struggling with depression and felt myself in a downward spiral. I have been told I am dying too slowly, that I am a burden on Russ, that I am a fraud because I am not on my deathbed now; all in a matter of weeks. 

I am feeling a lot of self loathing (and as a failure) as I had hoped a year on our finances would be in a better state, that things would be less messy and more manageable for Russ to takeover. Yet, despite all the frugal efforts made, I still don’t feel things are better 12 months on. I had also hoped to be prepared enough and finish my funeral preparations by now too.... but things need a lot more working done. I also hoped to have saved/paid off my funeral too (I don’t know who I was kidding). 

I just regret not having life insurance so much, it could have made life a heck of a lot easier.

So please if you can learn anything from this story is to never just take one opinion/advice from a person who is “an authorised representative”, to always get another opinion. 

I HAD life insurance and when I stopped working I was told that my life insurance would be void if I had no EMPLOYER contributions made, that I couldn’t just make them (the contributions) myself. My insurance lapsed as a result. I later spoke to them again (6 or so months later) only to be told that the information I was told was incorrect and I could have made contributions all along and I would still now be covered or be receiving the benefits owed to me.

That one person who incorrectly advised my rights has caused so much stress and inconvenience to my life and while I have been told that person no longer works there I have been left to live with this mistake $600,000 poorer… I didn’t question the advice as it had come from someone at the company, that I assumed them to be right. 

If only someone had of told me to get a second opinion. 

Same went for my thyroid cancer, a respected endocrinologist told me there was nothing wrong with my thyroid and a week later I was in Sydney having thyroid biopsies done as it was actually cancerous, sadly in “the sticks” there isn’t always a second opinion you can get but I am lucky that I sought one in Sydney. Or that time I was told I was diabetic from a Doctor without any testing being done and started medication, it didn’t feel right and made me sick, I saw a different doctor a month later and was diagnosed with anaemia not diabetes. 

Moral to the story, if it doesn’t sound/feel right always get a second opinion. 

Your best teacher is your last mistake

Though all of these moments impacted on my life, I learned valuable lessons about myself or others around me.

If you do happen to make a mistake along the way just learn from it, don’t be too hard on yourself and be forgiving - you wouldn’t really be living if you didn’t make mistakes. Just learn from them and make yourself more informed for next time.
"A mistake is doing something once, the second time it is considered a choice."

So here is to time and life, may we all take everyday as it comes and try to stop every now and then to take it all in, or smell the roses as some say. Life is so precious and I am just grateful to still be here 12 months on and living by my promise of trying to help others. So learn from my life if not for helping yourself, help someone you know.

Time and life is something that can go by so quickly and before long it is a year or 5 years later, so it is important that you make the most out of it. To be cliche and all, it really can be taken away at any time. I know I am cherishing everyday I have; as I know age, time and life are all a privilege.

Always remember:

“Life always offers you a second chance… it is called Tomorrow!”

Posted by: Talya AT 01:36 pm   |  Permalink   |  0 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
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
Thursday, November 24 2016

I took the plunge this past week, and did something that has been on my bucket list for a while now.

I tried a CRONUT, and it was every bit mouth orgasmic as you would expect. Seriously, if you are in Woolgoolga (NSW) be sure to stop by The Next Phase on the main street for an experience you won't forget in a hurry.

But I did something even more terrifying.

I enrolled in a Diploma of counselling online, not that I have enough going on (cancer, facing mortality and living life).... but when I enrolled, before being accepted, I had to write why I wanted to study counselling.

Long before I was told that my disease is at the end stage, I wanted to study counselling and hoped that one day Feeling Ostomistic would branch out into counselling sessions online (via email, skype) or in person... so when I got my prognosis I made it a personal mission to study it before I cark it.

So there are two reasons why I want to study counselling, and both are pretty important to me:

#1. To help you:
There have been times where a reader has reached out to me needing support. While I am happy giving support through my lived experiences, sometimes I feel that a professional would be a better person to talk to. It has never been that I didn't want to hear you out or help you, but it was more I was worried about not being able to help you properly as I am not equipped with the skill set.

I always feared that I was doing more harm than good. So I wanted to study counselling to help me identify people at risk, people who have a need that they might not realise themselves and to make sure that I have the right tools to help you in your time of need in a way that is empowering, helpful and the right way.

#2. To help my husband:
My husband has Autism, and one thing that he struggles with is change especially suddenly. I have felt so guilty seeing his pain as I have progressively gotten worse, and knowing that I can't fix it is frustrating. But also it worries me that I won't be here (when I die) to help make sure he is okay and looked after.

Russ needs changes to happen over time and to be gradually introduced to the idea. But when it comes to my death which is inevitable, I am struggling to introduce this to him over time. He knows I am unwell and we talk openly about it and my wishes, but it is more after it happens I am concerned about.

So I am studying counselling to help me to learn grief coping techniques that I can teach Russ and help him to identify when he needs to seek help. I feel by at least knowing the tools to help teach him is a great place to start. I just feel so helpless and I worry about him a lot, but I hope that I can really help him.

So that is my two reasons behind enrolling in the course, the online college was pretty impressed with my maturity and selflessness... I really do try to lead as much of a selfless life as possible.

I just always felt my purpose in life was to help others, I just hope I can.

Posted by: Talya AT 11:38 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
Tuesday, August 09 2016

I am so excited! Our house that we have been building (for what feels like years), is FINALLY at the 4 weeks to completion point.

Woop Woop!

This means that in 4 weeks we receive our keys and we can start moving in, ending our time as tennants and time to pay off our own mortgage.

This will also be my final house I will ever live in, and if my plan for an at-home death falls into place this will also be my final resting spot... and this is a dream come true, something I never thought I would get to experience.

In my 25 years I have lived in something crazy like 47 houses (I can name every single house) because my parents rented and sometimes we moved every 3-6 months, and then I have moved a lot in my adult life too.

So I am pretty excited to finally have a house that I can make into a home and not have the stress of house inspections and being evicted and having to move EVER AGAIN.

I am also pretty excited for my garden escape to be built and to have a place I can go to escape that is my happy place.... some days I really need somewhere outside of the house I can go and have privacy (and where we currently live that isn't an option as there is no fenced yard).

It took a lot for me to want to ask for help to create the garden escape for me, and I felt that some might feel that a garden was a silly dying wish to have, but it has been something that I really want and need... especially as I am mostly housebound and this is rather isolating and some days I am so down and depressed I don't get out of bed.

I know things will only get worse as time goes on, so I know that I will need this. I used to love going to the botanical gardens when I was sad or angry and it was my happy place, but I can't walk far anymore before being in too much pain so Russ wanted to try and bring the garden to me.

Russ set up a gofundme page to try and raise the funds needed to make this magical garden escape for me, and we have been so humbled and appreciative of all the support and donations so far! The link to the gofundme and to read my story thus far, https://www.gofundme.com/gardenfortalya

For what the working bee will involve (for those who have expressed interest) and my vision for my special garden and landscaping, please read on below. There is two sections: the main special garden (is my priority), but we also would appreciate any help in the rest of the landscaping (such as turfing, creating some gardens, laying pavers, mailbox) etc.

I have had a lot of family and friends ask what help we need in the garden, but also what things we need for the house. So I decided I would write this as a blog post so that I can just send them the link and they can read it, as opposed to me explaining it repeatedly.

Please note: I am not writing this expecting to get things for free, expecting charity or expecting anyone to buy things on our list out of obligation; especially as some of the things we need are costly. But if you want to help in the form of letting me know of a good sale going on, or a tradesperson that you know can help (and won't charge an arm and a leg and is reliable/trustworthy) please let me know! Or if any businesses would like to help out with a discounted price on an item we would be so grateful... I am really wanting to make a home that I can comfortably live out the rest of what time I have left.

1. Why a working bee?
We had a lot of family, friends and members of the community that couldn't contribute financially but said they can help with labour and skills they have, which will be a huge help. We also found that even those that did contribute financially felt they wanted to do more to help us.

As more and more people expressed interest in helping us, Russ and I decided that we would organise a weekend after we had moved in and settled in where we could invite people over to help us with the labour of helping our garden and landscaping. Neither Russ or myself have skills when it comes to building things and neither have had a house where we needed to do gardening, so we really appreciate all the help that has been offered.

Due to my tumours and state of my health, I won't be able to get out in the yard and help, but I am planning a lovely lunch/BBQ for everyone as my way of saying thank you but also making sure that everyone is well fed and has fuel to continue on into the afternoon. [If anyone would love to be my BBQ cook, please let me know].

I also hope that this working bee will feel like a community type project that brings people together and know that they are making a huge impact in my life and helping me to enjoy what time I have.

Once we have moved in and I have more of an idea of dates, I will create a facebook event for people to express interest in the working bee (to help me also to know catering numbers).

No one is to feel obligated to help in any means, we just thought it would be a nice way to bring together people who are able to help out.

As Russ and I have invested all our savings into building this house and paying for my medical expenses (keeping in mind we are a one-income household and are really struggling), we are trying to save money where we can.... so by people offering to come and lend a hand to save us paying someone in labour costs is really helping us out.

2. Help we need for the special garden (and help at the garden working bee):

The gofundme page that was set up by Russell will be used to fund this special garden, at the moment we are at 50% of our fundraising target and most of this funding will be consumed by the pond and water feature installation and the creation of a rock bench and pavers. I also need to buy a fence and gate, plants and koi fish... it would be awesome if we could reach the target goal and I can have the garden of my dreams and my true tropical Oasis... it is quite a big garden measuring 6.1m x 15m!

Below, is a list of the things I dream/envision in my garden escape:

Pond and water feature installation:
As the pond will be the main feature of the garden and as the garden allocated space is large the pond will be rather big as well to really make a statement.

Concrete/stone/rock bench:
I dream of having a beautiful seat that I can sit on when I am sad, when I need to escape from the world or when my stoma is playing up and I need to have a break from wearing a bag. Leading to this seated area that overlooks the pond will be a windy path through my garden.

Bamboo like plant for a screen:
One of the major reasons I need this special garden retreat is so that I can have some privacy to sit outdoors if my stoma is leaking and I just want to leave my bag off and air out my skin... I would feel more comfortable if I had a privacy screen and I feel one that is like a bamboo plant will tie in with the Zen/Japanese feel. Update: Have ordered some plants called 'tiger grass', would appreciate help planting these.

Hardy oriental type plants:
As a part of the pond build there will be a tree installed to provide shade to the pond, but I am hoping to plant other oriental type plants that are hardy in other areas of the garden to make it feel more relaxing.

Pavers and garden path:
I want to create a nice path winding through my garden and leading to my pond and a bench I will sit on in front of the pond. I want the sides of the pavers to be gardens of plants that will grow and feel like the garden is bigger than it is. I would like little miniture grass in between the pavers.

Colourbond fence and gate:
I am needing help to install a colourbond fence and gate to the front of my garden (that is the front side of the house) so that the yard can be accessed if needed but it still provides privacy and screening. I originally wanted this to be a feature rock wall but the costs were going to be $8k so I settled for a colourbond fence and just hope it doesn't detract from the garden space.

A nice big feature rock:
I know this might sound strange but I would love a feature rock in the garden and hope to have moss growing on or around the ground near it. When I die I want to have a plaque fixed to the rock that will be like a headstone. I plan on being cremated, but I want a memorial spot that my family can visit and go to. I want this plaque to read a funny line and my name and the dates (birth and death) along with a quote to help uplift or motivate them when they are sad and down and are visiting my rock. I don't want a grave, and I would only have a headstone if I felt like I wanted a place for family to feel connected to me, and I hope they will find my garden and rock this equilavent.

A bonsai tree:
It wouldn't be a Japense/Zen/oriental garden without a bonsai!

3. Other areas of our garden/landscaping we would love help with at the working bee:

Turf:
We are trying to get turf organised, I think it is 380 square metres but will need help laying it. I am certain between my brothers and Russ this can easily be done, but if you want to lend a hand the more help the better.

Garden Shed installation & concrete slab:
We need to store the mower, whipper snipper and gardeny things (rakes, hose etc) and rather than filling the main garage with trip hazards I feel it might be tidier and easier if we have a garden shed out the back. We are thinking a 3m x 1.5m  or 3m x 0.75 garden shed might be perfect and will allow us to store some trestle tables and plastic outdoor setting too. We would love a hand with installing the shed and laying the concrete slab, if anyone has experience in these please do get in touch (if you can lend a hand). 

Succulents:
I would love to have a succulent garden somewhere, even as a raised timber garden bed, or one of those decorative boxes that go in the centre of a table.

Trees:
I love watching birds playing in trees, and would like to plant some trees that attract birds especially lorikeets. Also love wattle and hoping other trees can be more native/hardy type trees that have a pretty flower and attract birds.

Gardens:
I am wanting simple garden beds with hardy elegant plants. I have some hedge/screening type plants arranged for the front of the house.

Timber trellis/pergola thingy:
If you watched the latest season of House Rules it was the SA backyard transformation by Clare and Hagan that had the timber trellis thingy above the outdoor pizza oven. I would like one of these in the back left corner of our yard with climbing vines going up over the top. We want to put the fire pit under it and some comfy chairs and sit outside and stare gaze of a night. If anyone knows how to build one and can help build me one I would love you forever! We also want to put some sandstone pavers under it too (but like a checkered pattern).
Image inspiration: https://au.tv.yahoo.com/house-rules/31783747/garden-transformation-sa-backyard/31783748/#page1

Mailbox:
I would like something that ties in with the house and doesn't look cheap and is sturdy. I would like a rendered brick mailbox if possible but have seen there are now concrete stone mail boxes with a rendered look which are pretty cool too.

4. Our list of things we need/want (in no particular order of importance):

Air Conditioning:
We know that this will be one of the more costly expenses (aside from the landscaping) and we are starting to research and get quotes for installation of different businesses. We initially need aircon in our bedroom and the lounge room, and later one in the dining/kitchen. As I don't have a thyroid my body gets hot really quickly and adding in menopausal hot flushes summer is really uncomfortable. I even sweat and am uncomfortably hot during winter and need the aircon on.. it is ridiculous I know but healthwise it helps feel more comfortable.

Blinds:
We will need to add blinds to the house and this is another costly expense. The rooms of priority are our bedroom and the media/lounge room, which we would need blockout blinds. We also need a blinde/shade for the glass sliding door from our ensuite to outside. If anyone has any recommendations of companies or installers please let me know. Once we save up enough we will put blinds in the other bedrooms, dining/living room.

Upright Freezer and cooked/frozen meals:

Russ' mum has bought this one for us as a housewarming and is planning on cooking a bunch of meals I can freeze and reheat for dinner, and the frozen meals will help so much.. if you feel like cooking a bunch of meals too I will happily accept!
 

Tea-towels: 

We honestly in 7 years have only ever bought 1 teatowl and it hangs on the side of our fridge... it was meant to be this cool bamboo and super absorbent but it does jack shit! No joke it is useless.. so we end up using towels to wipe up the dishes and I really need FUNCTIONING tea towels that dry and don't leave fluff all over the plates either.

Pillows: 
We need pillows for the spare bed, but also need to update our existing pillows on our bed. We have been using the same pillows since 2011 and they are starting to wear thin and causing head aches and neck strains.

✰✰✰✰✰✰✰

I really cannot wait to get started on the garden and to make this house into a home. I hope those that come to the working bee will enjoy the BBQ.

Much love and so many thanks,

Talya & Russell

Posted by: Talya AT 04:52 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
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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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