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.
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.
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:
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!
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.
Friday, June 15 2018
Today has been a massive day, I have been running around from appointment to appointment between the cancer centre getting my port flushed and bloods checked to getting my long overdue hearing check done. As part of my promise to spend time this year doing things for self care and prioritising me, this appointment was on the list.
I felt rather relieved to have finally had the appointment, moreso for what came next.....
I knew I had hearing loss in my left ear and knew it for a while, part of putting off the appointment to getting them was out of fear for the cost. Ever since I was 18 (2009) when I had the cysts on my brain I noticed hearing loss then, something to do with the pressure in my head, which has only gotten worse over time. Then when I had chemo I noticed with most things about my health, that it deteriorated more, so I feel for my neighbours as the TV is always so loud but I also feel for those I have hurt because they felt I ignored them or the conversation or that I was rude because I sat in silence.
But today I went and had my test and found out that I was eligible for free government subsidised hearing aids that I needed to pay $45 a year for batteries and servicing.
So today I got fitted and chose the colour and style, then in a fortnight I will get them as they have to be ordered - they will be fitted and I will be shown how to do it myself and then I have them for a fortnight to test run and make sure they will do what I need them to do.
If after a fortnight I am happy with them I accept them and they are mine.
It was a little overwhelming being told that I am eligible for hearing aids, not from a vanity perspective or worried for my looks, but because I can finally hear again and not miss out on conversations or pretend I understand and can follow along.
It gets so exhausting if I go to a family function or a social outing, even just a dinner date with Russ, if there is too much noise I can't hear and it gets tiring trying to focus as well as focus on not being in pain, and I tend to just sit there not saying much and can be labelled as rude, but it is just so so hard.
So I almost cried when I learned that I could be hearing in a matter of a fortnight.
I am hopeful and excited, I have needed this for so long.
I am not upset or worried, I am just grateful for our health system and that there is subsidised hearing aids that don't do fancy things but do just what I need and that is okay, would have loved to have gotten purple but Russ found a colour that would blend in with my ear and hair so won't stand out too much.
So I am okay, I am just grateful for all the new possibilities coming my way.
I learned years ago to never take hearing for granted and have been grateful I still had hearing but was just hard to hear in one ear.
So if ever you felt I was ignoring you or being rude, I most likely just couldn't hear you.
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:
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:
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:
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:
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.
Sunday, February 25 2018
Did you know: there is an International Day for just about everything!
Feb 20 was International Love your pet day, but that is just about everyday amiright?? It is made easier when your pet is beautiful, funny, compassionate, photogenic and clever.
Dusty is my (well, I should say OUR) beautiful little ragdoll kitten who will be 2 later this year! He came to live with us when he was just a wee kitten and it was a matter of love at first sight, Russ and I fell in love with him straight away. He was just so, so tiny and adorable!
Dusty was so tiny he refused to go anywhere without me and often demanded I carry him or he slept on my chest, of a night he refused to sleep unless he was snuggled up to me in my bed and he has snuggled up to me every night since. He is like a soft, plush teddy bear but he helps to make you calm when he purrs.
We have been gushing over him ever since he came into our lives and will show off pictures and talk about him every chance we get and to anyone who'd listen... yes, we are THOSE type of fur-parents.
Russ and Dusty have their own special bond and routines, just as I have with Dusty.
I can honestly say with my hand on my heart that Dusty saved me and has made my life significantly better!
Life BD (before Dusty) was fairly lonely and boring, to be honest the days were long!
But since, it has been filled with: love, friendship, so many cuddles to count, laughs and companionship. He senses when I am sad and forces me to cuddle him, he is incredibly emotive and he has the most beautiful big blue eyes that just melt your heart.
Russ leaves for work at 8am and I am no longer alone while he is gone for the day, Dusty looks in on me when I am sleeping and often is close by. He can even sense when I am in pain and unwell and is extra affectionate! Dusty also makes me laugh a lot and makes me feel so very loved.
Did I mention he is so clever too? He plays fetch with me everyday! I throw his toy and he fetches it and brings it back for me to throw all over again.
I never realised I could love my kitten as much as I could, I always never understood people when they said their cat is not JUST a cat and is a member of the family... that was until Dusty came into our lives!
Dusty is our child, he is our furbaby and he has helped to make our house a home. He greets everyone who enters with excitement and love and he tries to protect our home too, he also seems to know everything that is going on within our house often you'll find him at the door or window being a stickybeak. But his most important job is excitedly greeting Russ when he walks through the door after a long and hard day at work.
Dusty is famous:
So when OstomyConnection shared their "15 ostomates who love their pets more than anything" I was so honoured to see that not only did Dusty and I make the list, BUT we were number 1 too!
I have been sharing Dusty's shenanigans on Instagram and Facebook, he gives me so many reasons to smile and he has become a reason for many others too, often I am emailed and they make mention of how they love Dusty or when I run into someone down the street they say he makes them smile too.
He has THE BEST facial expressions!
You can find more of Dusty on my Instagram/facebook account under @feelingostomistic, he also has his own page @fabmewlous_Dusty on Insta and facebook.
I am grateful to the joy and love Dusty has given me and I am sure it is one of the major factors in me still being here. He helped improve my spirits and my outlook on life.
The best advice people gave me when I got sick was that I should get a pet as they are the best therapy, I am just glad I listened! Maybe a pet will help you too!
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:
The irony is that they could have shown more compassion surrounding how they approached the idea and livelihood with an ostomy.
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.
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:
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:
✰Introducing Laura Zapulla @stomalicious - Ostomy travel blogger:
✰Introducing Sam Abarca @aussie_ostomate - RN with an ostomy and training to be a STN too:
✰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!"
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:
✰Introducing Dana Marie Arnold @lovedanamarie - country music singer/songwriter, recently married:
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.
Wednesday, February 07 2018
CONTENT WARNING: DISCUSSES DEATH READ AT OWN RISK
What a massive couple of weeks it has been, if you were following along on social media you may have seen my posts from hospital updating on what was going on.
Australia Day, is often a day spent with family and friends remembering or celebrating what it is to be an Australian, I know the day has conflicted meanings and celebrations for everyone, but Jan 26th 2018 will be a day that I remember just how close I came to those pearly gates and how bloody grateful I am to live to see another day.
So this is what had unfolded:
On Tuesday Jan 23rd, I was brushing my teeth around 4pm when I had a really sudden sharp pain around my right kidney area and shot down my leg and my leg felt like it were about to snap. I hopped, literally, to bed and got comfortable and had a nap. I woke around 10pm and struggled to get up out of bed and then also get to the toilet.
The next day the pain in my right leg was a lot worse, I couldn't weight-bear and relied on Russ to help me move from bed to toilet back to bed. I was crying in agony.
Thursday morning I woke and trying to get to the toilet I was screaming in pain. Russ was heading to work and I called Palliative care who told me to call an ambulance. So Russ left for work and I went in the ambo to the hospital. I had fentanyl up the nose a couple of times and barely took the edge off, no amount of morphine was helping either. Russ went to work but by 10am he was at the hospital as he was upset and wanted to be with me. It was a comfort him being there as I was in agony and I was so scared. The pain was horrendous.
I was admitted to hospital.
The next bit is where things got dicey....
So overnight my heart rate went sky high, talking 144bpm (normal for me is 90-100). My o2 dropped too.
They monitored me but by next morning things weren't any better.
I remember friends messaging me around 10am and I replied back, I thought I made sense but it was all drivvle and nonsense but it looked fine to me, so I didn't think anything of it.
That was all I recall, I don't recall much after that point.
Apparantly, from the pieces I managed to compile in the days to follow, was that I was passing in and out of consciousness. I went into a deep sleep and they struggled to wake me.
I kept coming too during the "resus" which may have been around 3pm and saw bunch of folk standing around my bed, some were pushing IV drips in, someone pressed the big emergency button, remember my bed being wheeled to another room where doctors were talking to me. I was upset and frustrated as no one was telling me what was happening, turns out they were but I was passing out by the time I asked my question and them telling me what was happening.
I wasn't sure where I was and my speech was slurred.
They rushed me up to CT and did a full body scan, thinking I was having a stroke or heart attack. I am on clexane injections due to previous blood clots in my lungs, but also because the tumour in my abdomen has blocked off the major arterial blood supply to my small bowel and stomach and they were worried that maybe there were a clot in my small bowel (one of the forecasted ways I could die)...
So I was upset and asked them to call Russ, he arrived sometime after they called him (he was on his way to me anyway) and I calmed down a bit when I recognised one of the voices of one of my doctors off my palliative care team, it was just scary being unconscious and not being able to see who or what was being done to you and remembering I didn't quite know what was happening.
I did also keep telling them "I'm not ready to die today" and "ignore my DNR". I was adamant that NOW was not my time and I was crying saying "but I am not ready" and "I need to write my goodbye letters".
I was just so worried that I was dying alone and it was my fear.
So fast forward to post event, I was so hazy and tired. My body hurt from the siezures and all the medications, I was having trouble reading (still am) but also what I was speaking wasn't what my mind thought I was trying to say, even typing for a few days after were a struggle.
I am still so tired and exhausted, I am trying to rest, but it really has been such a difficult couple of weeks.
They don't know what happened, they think it were an infection, my leg is still giving me grief but I was just so terrified.
Had I stayed home and tried to "tough it out" at home like I usually do, things would be very different and I could have very well died in my sleep during the day alone.... which is one of my fears, is dying alone. Russ has a fear of coming home from work and finding me, he gets worried when he calls me as he leaves work (even before all this happened) that he never knows what is awaiting him at home... poor guy! This latest event hasn't helped his fears though.
But it made me realise a few things...
1. I am not ready, I still feel like I have so much left to do, including putting pen to paper and penning those difficult goodbye letters to my loved ones.
2. I have a newfound appreciation for every good moment of the day and just how grateful I am to be alive
and 3. That Russ has even more grey hairs now than he did a fortnight ago, but that I saw just how much me being sick has taken a toll on him.
But jokes aside, I honestly always thought that when it were my time to go that I would know that it was time and that I would feel this sense of calm and readiness, as if I felt accomplished and happy. Now, I worry that maybe there isn't ever really going to be a universal sign or feeling of totality and that maybe you won't know.
It has made me even more determined now to try and get my affairs in order and try and be the best version of me I could be.
So I am home now, pain meds have had a total overhaul, back to weekly palliative care visits and here's hoping there are a few more chapters left of my story.
They pumped me with so much fluid during the resus that my stomach swelled up really badly, so much that I thought it would just split open, so took duiretics to help shift the water and my stomach is resembling it's usual self but still sore. Even around my stoma was swollen from fluid.
It has been a difficult week adjusting to being back home, I am still feeling weak and tired, my brain still feels sluggish and I am just taking my time to rest and actually listening to my body for once. I am not going to push myself anymore and after starting off 2018 on a rough patch I hope theres a few good months ahead.
Thank you to all the love, messages, comments checking in on me, it is a comfort knowing so many care.
You're stuck with me for a little longer still, well I hope anyway!
Sunday, February 04 2018
If you could see me right now, you'd see that I have THE biggest grin on my face. Imagine a Cheshire cat style grin....
Yes, it's that huge!
I recently got home after a short stint in hospital where on Australia Day I almost died, it has been a rather upsetting and hard fortnight but I am home now and recovering (and catching up on everything).
I am so grateful and acknowledge my own privilege in that I could come home this time, but also that I continue to live for another day.
I was so scared on that Friday as I wasn't ready to die, I had so much I still was yet to achieve and do and finalise. I was scared that I felt things weren't ready and my anxiety since has been sky high, understandably so, worried about when or how close the end actually is - which is looming everyday closer, it is terrifying.
I know I have so much I wanted to achieve and goals I had set both personally and for my blog, which brings us to today's post.
Back when I started my blog 5 years ago I said to myself:
So I remember a couple of weeks ago - before I suddenly got sick and went to hospital - I had looked at my site stats as I was updating my media kit for January. It was when I noticed that my blog views were sitting 15k shy of half a mill.
I said to Russ:
I am not writing this as an intended brag post or anything, and I know for some blogs 500k views is their monthly or yearly visit, but I am sharing this as I am feeling incredibly proud as punch right now.
5 years ago I was told I had early stage bowel cancer and was about to undergo surgery to remove my entire large bowel and live the rest of my life with a permanent ileostomy for the rest of my life.
I was scared
I was alone
But I took a leap of faith and courageously started my blog.
I was worried that people would not be kind or respectful, or that people would be judgemental and rude. I also worried that maybe what I am trying to share wouldn't be read by anyone and wouldn't be providing value or meaning.
I was full of self doubt.
It is quite vulnerable when you put yourself out there and you don't know how this all would work out and how well your blog would be received. Especially given that it is a difficult and personal experience that I was putting myself out there during what is a private time of mine and my husband's life, but I knew that if I shared this openly and what I learned along the way that it could actually be helping someone somewhere. I know it helped me immensely to share this, gave me a sense of purpose.
Back then there weren't many ostomy bloggers, social media (instagram more so) wasn't as huge nor were those publicly sharing life with an ostomy, and ostomy life and living with a bag was such a taboo subject. It felt rather lonely and isolating, felt kind of like it was a dirty little secret and I wanted to try and change that and help the next generation of young ostomates to embrace their lives and stoma.
I had hoped that I could be part of the movement of helping to normalise life with an ostomy and raise awareness of that life as a young person with a stoma is still able and that life won't end.
So with hesitation I hit publish on that first post and was surprised by what followed.
I was thanked for what I wrote, I found people who respected my writing and it has led to some amazing friendships and I found my tribe and community.
I felt valued, I found self worth and I found that there was a sense of magic in helping others to feel less alone as they navigated their ostomy life or dealing with new diagnosis and what comes next or even in finding themselves again.
I know it is scary and daunting sometimes, but I know how much better it is when you find someone who you can identify and relate to or read something that creates an 'ah ha' moment... I just hope that I have helped others.
My milestone, that I thought back 5 years ago was unrealistic and unattainable but I still held hope and believed in myself and backed myself. I learned a lot in that time not just about life but also about myself.
My blog wouldn't be what it is without you guys, my tribe and cheer squad
Of course me celebrating this moment would be worthless if it weren't for every single one of you who read my blog, support me and my writing and have helped me create a community.
Thank you so much for your support, respect and kindness over this time, but also for your friendship too. Thank you for embracing me and for letting me be myself and helping me at times on my quest to find/discover/remember myself and for reminding me when I had forgotten.
I want to thank you and show you how much I appreciate you.
I have been looking at ways to celebrate my 5 year blogaversary, reaching half a million views to my blog and being close to 1000 facebook likes. So I am thinking of fun ways to say thank you, so please stay tuned.
What an Ostomistically amazing time it is to be alive!
I am grateful so much for you all and if I have helped you in any way please comment below.
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:
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:
#2. My stoma leaks a lot:
#3. I often sleep starkers:
#4. I am often in pain and bedridden:
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 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:
#7. Our house mightn't be visitor friendly:
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.
Friday, January 12 2018
I know I have chirped on and on (and on) about how we are struggling financially and that I am concerned about when I die and if Russ can manage it on his own. I know you're probably sick of hearing me go on about it, but it honestly is so stressful.
It is hard being on one income, I know it is overwhelming for Russ too.
So last week we got a letter from our bank informing me that as of today (the 12th) our mortgage will be going up $500 a month.
This really scares me.
Not only do I not know where I am going to pluck that extra $500 from this month considering we are already halfway through the month, but that I really am so stressed and upset.
Yes, I acknowledge my priviledge in that we have our own mortgage, but even when we were renting things were hard and the rent assistance really made the world of difference when it came to our budget. But it doesn't mean that things instantly became easier when we got out mortgage. I didn't realise how much harder it was to have your own place.
I see how worried Russ is over this and I know he is on the fritz of losing it as it was before this letter, now he is just even more stressed. I feel so guilty, I know it isn't my fault and that I couldn't help getting sick but it is my age old issue with that I should have gotten life insurance earlier or made more of an effort to do extra super contributions when I worked as it would mean I have more than $3000 in super.... which I am still fighting to get out mind you.
That is a fight for another day.
Yesterday I got a copy of Barefoot investor in the mail (thanks to a beautiful friend buying and sending me this copy) and started reading it, I have heard everyone rave about it and how effective it truly is, so it gives me hope for the first time that maybe I can get things under control this year.
It is one of my goals to get things neater for Russ, I don't know how much time I have and I think it will just be a massive peace of mind to know it is under control.
We have our mortgage, debts, car loan plus our other bills. So I try each year to review things to see if there is savings to be found, so I am hopeful that this book will help me even more.
Plus, it is one of my goals to read more too, so this is already tackling my goals for the year.... maybe this year is getting off to a stressful start but it might be turning around? Always hopeful that things will get better, surely they have to?
A friend has put me in touch with a broker and hoping we can find a new bank with a better rate and can consolidate our debt which will mean freeing up a lot of weekly expenditure and might mean we can afford to start saving.
So tell me, have you read the book? Did it help you? What was the biggest take away you had from it?
I will let you know when I have finished reading it and what progress I make.... until then, wish me luck!
We also got Solar Panels on recently, they had a 5 year interest free offer, so we are really hoping that on our next bill we can see a difference, otherwise I am going to be rather upset. Russ assures me we will be better off and that it will improve the value of our home too. Do you have solar panels and do you see a difference? Next bill is March, so will let you know if there were savings to be had.
As always, thank you for listening and wish me luck as I tackle this mammoth task!
What goals are you hoping to tackle this year?
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 :
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.
Letter To My 21-Year-Old Self:
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.
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!
Monday, January 08 2018
I know there has been a lot of posts around social media this past week (well, more so New Years Day) about the whole 'non resolutions' or how people were dropping the making resolutions as they either never stick or it makes people feel overwhelmed and anxious. This has something to do with the pressure placed on how it is a "new year new me" and that you internalise this pressure for the need to change yourself.... so it gets pretty depressing when it is the end of the year and you are yet to do one thing you set out to do.
Well, I know for me I get horribly depressed each December when I realise that none of my unrealistic/unattainable goals weren't met, and I feel like a bit of a failure and get pretty hard on myself.
So this year I plan on doing something a little different... I give up on each year setting myself the task of finding that million dollar idea (maybe if I don't try so hard I will find it), or to feel bad that I didn't finish my uni degree, or that I haven't got a hot bod (#sorrynotsorry).
I am choosing 18 ACHIEVABLE things I want to accomplish in 2018.
#1. Self Care:
I purchased the ebook version off Amazon and by a quarter of the way into the book I was astonished, I could have sworn it was me who had written this book as it was just so incredibly relatable. It definitely has me hooked!
Self care isn't necassarily just candle lit bubble baths with a glass of bubbly and reading a book, it can be a whole range of things. It could be doing things that make you happy, here is a post I wrote back in 2016 about 5 things to do each to add happiness or meaning to my day. You could choose to meditate or do yoga, could do a course or learn a new skill, could do something on your bucket list, could volunteer, do a random act of kindness, buy yourself flowers, get pampered, get your hair done or watch a movie or show.
#2. To read more:
So I have been so focussed on micro managing every part of my day/life that I would say I was too busy to read or I didn't have the time, but I vow this year to make time to read more. Whether it be the ebooks I have stored on my ipad or tablet, or going old fashioned and reading the amassed pile of books I have acculumated over the past few years. So starting with reading "The Self-care project" I am setting myself the challenge of either reading 1 book a month or 18 books this year.
Let's do this!
#3. To say No more:
In saying this though, there will be times where I say no simply because I am physically unable to do something due to pain or health, so I am sure this will cause more stress as some might think my health is an excuse? As I said, a challenge... but I am not putting my health at risk for a ridiculous deadline anymore.
#4. Reducing waste:
One of my favourite quotes from Gandhi is "Be the change you wish to see in the world". Change is hard and takes patience and a lot of baby steps, but you can't expect the world to be better or changed if you don't play a part yourself.
So I have ordered some produce reusable bags from my Sister-In Law's business which will mean no longer using single use plastic bags for produce. We also plan on using environment friendly bags in replace of plastic bags and I hope to get a compost happening too.... as I said it will be hard, but I do hope it will help the environment.
I feel guilty sometimes being an ostomate, because my base plate and bags aren't biodegradable (that I'm aware of) so even if I used bio degradable garbage bags and buried it, it still wouldn't break down and would be just the same as putting it in the bin. So I hate having a bag that leaks multiple times a day as it means a lot of ostomy products are used and thrown away, and I feel guilty that I am impacting the environment.... but it can't be helped.
So if I can make changes in other areas of my life, it hopefully makes up for it somehow?
#5. See the snow:
I had always hoped to get to the US or Canada and see this in person myself, but while that dream won't happen, I am happy to settle for somewhere in Australia where it snows, there is a romantic log cabin with a fire and somewhere Russ and I can unwind and relax.
I have heard him say almost daily the past month that he truly wants to experience this with me. Watching all the romantic Christmas movies helped I think, but it has had him rather upset realising too all the things he wants to experience with me but not sure if we will.
It is hard sometimes trying to squeeze 80 years of experiences into as much time as we have left.
If you have suggestions, do let me know, I can't fly so anywhere that is easily train accessible or short driving trips in NSW will be best.
#6. Learn something new:
I am doing a course right now cert 4 in screen and media and learning at the moment how to write children's stories.
#7. Write that damn book:
#8. Write a blog post a week:
#9. Write a journal:
All of these writing cues would be kind of life self care I guess, since it is cathartic and all.
#10. Regularly meet with a counsellor:
I guess this would come under self care and taking time for my needs too.
#11. Go Swimming:
Don't worry I plan on being sun safe and have my SPF50+ rashie from SunSoaked and my Sunbella parasol to help me too.
#12. Go Glamping:
#13. Have a holiday:
#14. Explore the Coast:
We still have bucket listing adventures for Brisbane, Sydney, Newcastle and beyond. I am just wanting to see so much!
I am just really hoping to see/experience new places this year.
#15. Renew our vows:
I had always said when we get to 10 years we would renew somewhere fun and overseas, but not sure that dream of international travel is managable or if I could make it to our 10 wedding anniversary.
#16. Get back on our feet financially:
We tried to apply to several other banks who all declined us because we didn't have savings (everything went into our house) and so we had hoped to even consolidate everything into one loan to make repayments easier and more affordable but were declined. Despite having equity in the property. It is hard to have savings when every cent is going into the house, our debt, living expenses, medical expenses and the list goes on.
I am just hoping this year we have better luck and if we can't at least consolidate everything that we can find a new bank for our home loan. I just want out of their grip, just like Britain wanted out of the EU. If we can get a new bank and debt consolidation everything will be more easier, we might even afford a mini holiday.
Part of this is finding a new bank too. I just want and need everything to be tidied up and managable ready for Russ to take over when I die.
#17. See a waterfall:
#18. Try to get my pain under control:
I spent the better part of last year struggling with my pain. I know my doctors are doing their best to manage it, but it really is hard and affects so many aspects of my life. It is debilitating, exhausting, it makes me frustrated and irritable, it messes with my mental health and it just sucks. It is hard to manage getting out of bed most days let alone manage an hour of getting out and about. I missed out on a lot last year and I don't want to miss out on life this year because of pain.
☟ ☟ ☟ ☟ ☟ ☟ ☟ ☟
I know it was a long post, but I thought 18 made sense since you know it is 2018 and all. I feel good that it is all written down but now overwhelmed, which is ironic, but I will do seperate posts throughout the year both here and on social media documenting how I go... it means I can hold myself accountable now since I have told you all about this.
My list honestly could have continued such as "yet to finish unpacking", "yet to manage that room makeover" and so on. I just decided to choose things that will either improve my life, bring me joy or are somewhat achievable for this year.... and if I win the lotto that is a bonus!
Russ asked me what I have been writing/working on the past couple of days, he then rattled off a list of 18 things he *felt* I should do instead which all involved him and were very much Russ focussed or specific. I laughed and said, your list kind of defeats the purpose of several things on my list like taking time for me and saying no and putting me first.
To be fair, his list was most of what I do anyway which was:
Here's hoping 2018 is a good year and that I can do some of these things if not all. Despite spending over 80% of the year in bed last year, the times I did bucket list stuff or was out and about are some of my most cherished memories looking back, those memories I remember on my bad days.
I wish you a HNY2018 and wishing you health, love, success, happiness and clarity this year.
Thank you for reading, feel free to share something you hope to do this year in the comments below:
Thursday, December 14 2017
If you have just read part 1, You will have learned: how heat can affect those who are vulnerable or sick or with an ostomy; what are the different heat related illnesses to look out for; what are the symptoms of the heat illnesses; and lastly, how/what to do under each situation.
NB: It is important to remember that this is just an informative guide only and I am not a nurse or doctor, and any individual circumstances or advisement is based on each person's own circumstances. If you have questions to follow it up with your team.
So in this Part 2, I will be sharing tips to help you be more prepared for the weekend
But just in case you haven't read part 1 yet, basically here in Australia we are preparing for an extreme heat wave which will occur over the weekend and most of Australia will be experiencing temps of 35'c-45'c+.
I have an ostomy, ileostomy to be exact, I also have other chronic co-morbid health issues/illnesses and take various medications which put me at higher risk of sun related illnesses.
I started writing this post a couple of years ago but never finished it in time for it to be relevant, so I am finishing it ahead of this weekend, I only hope it might help someone to be more informed of their own circumstances and to know what to do.
Also keep in mind anyone you know who might be at a higher risk of suffering with the heat, it could be a neighbour who is elderly and lives alone, or it could be checking in on a friend, just to make sure they are doing okay - as the heat can affect many in different ways.
Part 2: Being prepared and tips to surviving the heatwave
I thought it might just be helpful to share different tips to help you get through the heatwave, if you have your own be sure to comment.
Tip #1: Never leave kids or pets alone in a car
Even on a "cool day" this is a no-no. While the temp outside might only be 25'c the temps inside that car can be 55-70'c! It can rise 40 degrees hotter than the outside temperature, so imagine how hot it would be on a day during a heatwave.... scary to think. The damage it can do is increase a child's body temperature, which could lead to brain damage... not to mention what it does to pets too.
I have seen videos and experiements where a chef has cooked a lamb while inside a car, to a vet documenting what it is like in a car. I do not suggest trying it out yourself, there are plenty of videos and information out on the interwebs about the consequences to leaving pets or kids in cars, which can be deadly.
A child left in a parked car under those conditions for even a few minutes can very quickly become distressed, dehydrated and can die from organ failure. If you see anything, you need to act quickly. If you wait, it can be too late.
What to do if you see a child or pet in the car?
You don't have to be an NRMA member to call for roadside assistance if it is in less urgent circumstances. Because of the grave danger involved, the NRMA drops everything to respond immediately to calls where a child is locked in a car.
For pets: Visit Just 6 minutes, a site by the RSPCA which outlines that it takes only 6 minutes of a dog left in a car to die. Here is a factsheet of pet first aid if you can rescue the pet from the car and can wait until the owner arrives. Call 000 immediately and ask what you're legalities are if you can smash the window. But some states you can receive a $200k fine and imprisonment for leaving a pet in the car.
Tip #2: Have plenty of water
You should drink two to three litres of water a day even if you don't feel thirsty.
Tip #3: Have electrolyte replacement on hand
Also important if you don't have an ostomy but have gastro or vomiting bugs during a heatwave too. Hydrolyte is an electrolyte drink which also comes in the form of icypoles too and can be found from most supermarkets or chemists.
Tip #4: Stay cool
If you are outdoors try and find a nice shaded tree and be sure to keep hydrated.
You could also use one of those battery operated hand held mist fans Kmart have them for $5-$10, or a spray bottle with water in it to help.
A cool tip, get it (lol) I have one of my heatpacks in a zip lock bag and in my freezer. This turns into a cold pack and means I have a cool option too. I get my heatpack/cold packs from Chatterbox City.
Tip #5: Keep plenty of drinks in the fridge prepared
Tip #6: Have ice packs or blocks in the freezer
Tip #7: Keep blinds drawn
Tip #8: Wear light summery clothing
Tip #9: Be sun smart and sun safe
Tip #10: Reapply sunscreen often
Tip #11: Don't lie in the sun exposed
Tip #12: in case of a blackout
Tip #13: Open the house at night or evening if a cool change is forecast
Tip #14: Pets or wildlife
Fill a kids clam pool sand pit thing with water and put in the shade and let your dog cool down when he needs to.
Tip #15: Keep your body cool but not freezing
Tip #16: Check in on those at risk
Tip #17: Watermelon
Tip #18: Foods
Tip #19: Wearing a stoma cover
Tip #20: Mashmallows
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I hope that you have found these 2 posts helpful on how to prepare for a heatwave with an ostomy, I know they have been long posts but there was a lot of information I needed to share with you. These posts do not replace the information of that of your nurse or doctors, it is a guide to help inform you of the risks and tips on getting through the heatwave safely.
Please be sure to seek medical attention if you require it and don't delay, heat related illnesses are deadly serious.
More Links through my research:
If you have another tip, be sure to let me know in the comments below. To read part 1, click here
Thursday, December 14 2017
NB: I am not a doctor or nurse, I am sharing information through my own experiences and also that of various credible sites online. The heat and how it may affect you can differ based on personal health issues, so please do speak to a professional regarding how to be safe in Summer based on your own needs. I am sharing the advice I have found and learned in the hopes it may help you to have a better awareness of how to prepare and endure the heatwave.
Here in Australia, we are 14 days into our Summer. We had a fairly non-existent Winter where we live near in northern NSW, and it honestly felt like a mild Summer. I don't recall having to wear a jumper at all and some nights we needed the air conditioning on. But temps were always around 30'c, it was so dry and warm that our grass and plants were rather dead looking - thankfully, after a lot of water and work, the lawn and garden are thriving.
But it did make me worry about the sort of heats and Summer to prepare for, and if going off the predictions for this weekend - I had a right to worry.
So this weekend, particularly Sunday and Monday, most of Australia will be experiencing temperatures ranging between 35'c to over 45'c, we are told this could be the first of many extreme heatwaves we'll need to prepare for this Summer.
..... 14 days in to December, this is going to be a long hot Summer!
Part 1: Knowing your risk and what to do
I know you're probably thinking, "big deal just go to the beach, no biggie" - well it actually is a big deal, especially to those vulnerable in the community which includes:
During heatwaves you can be at risk of heat related illnesses such as heat stroke, dehydration, overheating or hyperthermia, heat cramps. Heat can also worsen health conditions too. During this time the extreme heatwaves can attribute to bushfires or power outages (blackouts) too, so it is important to be prepared.
Summer and heat realated health issues and illnesses need to be taken seriously as it can lead to deaths, heart attacks, strokes and more.
How does having an ostomy put me at risk during a heatwave?
Then add in sweating and extreme heat to the mix and you're more susceptible to becoming dehydrated and suffering due to the heat. Aside from drinking plenty of fluids, also drink electrolyte drinks such as sports drinks or even icypoles filled with all of your delicious minerals and vitamins. Be sure to ask your stoma nurse or dietician what else you can do to help.
With the dehydration issues aside (I will share signs to look out for below) heat can also affect your stoma, such as: by your bag not adhering to your skin properly, using tapes/boomerangs these can help to secure your bags; you might get a heat rash, I know in Summer I get a heat rash where my bag sits against my stomach, I find wearing stoma covers helps with the irritation; Your output might be more watery due to dehydration, so have some marshmallows or gastro stop/immodium to thicken your output. Just remember your spare stoma kit and supplies if you do go out, just incase you happen to have a leak.
It is important to also keep in mind (during the heatwave) that if you are outdoors, doing any strenuous activities such as sports or gardening with an ostomy, you are at risk of heat cramps too. I will explain more about heat cramps below, but essentially due to excessive sweating the body loses water and salts (electrolytes) and when the salts in the muscles get really low these cause cramps. If your electrolyte levels are at risk of being low consider avoiding activities that might put you at risk of heat cramps, at least until you are rehydrated and the weather is as normal as it will be during Summer.
So what is dehydration and what are the signs to look out for?
NSW health says the symptoms/signs of dehydration to look out for are:
So what should you do if you or a loved one are dehydrated? NSW health offers this advice:
So what are heat cramps and what are the signs to look out for?
NSW health says the symptoms/signs to look out for are:
So what should you do if you or a loved one are suffering with heat cramps? NSW health offers this advice:
So what is heat exhaustion and what are the signs to look out for?
NSW health says the symptoms/signs to look out for are:
What to do -FIRST AID- according to NSW health:
So what is heat stroke and what are the signs to look out for?
NSW health says the symptoms/signs to look out for are:
What to do -FIRST AID- according to NSW health:
I know that this is a long and comprehensive guide on the signs and symptoms pertaining to heat related illnesses and what to do in terms of First Aid, in the next post (part 2) I will talk about being prepared and tips for enduring the heatwave.
Again, I am no health professional, I have only done 2 years of Nursing, but I just wanted to put as much information out there from reliable sources to help you be more informed when it comes to the heat and Summer... especially with an ostomy or any health issue, which can make your risk heightened. Please seek medical attention and don't delay, also remember to slip slop slap!
Please be safe and be mindful of how your medications can affect you with the heat, speak to your doctor or pharmacist if you are worried.
Sunday, December 10 2017
You don't need me to remind you that Christmas is around the corner and fast approaching, I am sure everytime you step into the supermarket you're reminded with visual cues.
But just in case you live under a rock.... there are exactly 2 Sundays left until Christmas.
so #keepcalm, don't panic - you've got this!
I have always had this dream of hosting Christmas one year, not realising the full extent of what that might involve, I naively and dutifully spent time preparing and getting the house and ourselves ready last year - as it was indeed my turn.
As my family live 2 hours away, this meant they needed to travel up the night before (for those who stayed the night) or the next day (for those who didn't stay). I am the oldest of 10 kids, then there are our partners and now nephews, so there were a lot of people coming for the couple of days.
So here were the things I did to help myself prepare and get ready for having guests over the holidays or throughout the year, based off of various guest's experiences or feedback over the past year....
My 10 top tips to getting ready for guests at Xmas time:
#1. Ensure there is plenty of toilet paper:
#2. Knowing the meals or menu ahead of time:
Yes, I designed and sent out a flyer for Xmas day - I informed the menu plans, what they needed to bring, accommodation options and also offered to wrap presents... I think the last part people may have thought I was joking about. But Talya doesn't joke when it comes to wrapping presents - I love it!!
#3. Prepare things before Xmas day:
#4. Ensure your guests have easy access to items:
#5. Have plenty of towels available:
#6. Have empty and clean bins near all toilets:
#8. It's okay to need 'me time' and step away for a breather
#9. Have a fan or cooling option available, especially if it is summer
bonus tip #11. Have plenty for your guests to do
So while I know there are plenty of ways to help prepare yourself and your house for guests, whether it is the holidays or anytime during the year, these are just some of the ways I have tried to ensure my guests had a good time when they visited.
Wishing you a lovely holidays, hope that you have a wonderful time with your family or friends and thank you for your support during this year and beyond, it really means so much to me! Every comment, message or email doesn't go un-noticed and are very appreciated.
p.s what other tips do you have for getting your house ready for guests or to ensure guests have a good stay? Let me know in the comments
Saturday, November 11 2017
Sometimes we think that society has advanced, but then there are times that remind you that the world around us is a cruel, judgemental place filled with so much hate and anger.
I think it is time that people stopped shaming people with disabilities, especially those with "invisible" disabilities. Unfortunately not all disabilities are visible and we should be open minded and not fast to judge and be cruel.
I saw several posts online today about how a young student had flyers and posters stuck all over her car calling her lazy for parking in a disabled parking space, or that she isn't actually disabled.
This girl is undergoing treatment for cancer including radiation, but these vigilantes shamed her and made her feel guilty about her situation.
As a young female who has cancer, I know how hard it were having chemotherapy and struggling with energy to go to the shops and do mundane things like going to the bathroom.
Due to my tumours, one is the size of a watermelon and is attached to my stomach, small bowel, both kidneys, my ribs, my liver and presses on my back, and also compresses the nerves and blood supply to my stomach, bowel and my legs too.
I have a disabled parking permit because I am unable to walk more than a few metres at the time before needing to sit and rest as the pain is too much and the pressure along with the numb legs isn't pleasant.
So I have a wheelchair and I am not ashamed of it.
My wheelchair has given my life and ability to enjoy and love life back.
But people, even family, recently said that they thought I had a wheelchair because I am lazy.
Yes I am overweight, but that isn't why I need a wheelchair.
I need a wheelchair because I have a watermelon fucking sized tumour slowly killing me through strangulation.
But hey I am just lazy arent I?
I know this issue of disability shaming is happening all too often, just people think they see something they need to be somewhat of a hero and stand up for "what's right", which they feel is belittling someone to feel less than about having a disability because it isn't a perceived acceptable disability.
But not all disabilities are visible.
AND a disability isn't just someone using a wheelchair.
If you look up the term of disability it is: a physical or mental condition that limits a person's movements, senses, or activities. It doesn't say it is limiting to those in a wheelchair.
You don't know what is going on inside another person's body, you don't know the struggles that person is facing, you don't know the shit they have had to put up with that day already due to their disability.
So before you think you HAVE to say something, remember the acronym THINK:
It might feel like your responsibility to call out every person you think is abusing the system, I get it, but while it helps you and your ego to feel better, you are destroying someone else's life just to make yourself feel better. Probably think you're helping to defend people, but you are just making people with an invisible disability to shy back further into their corner feeling shame for not being as able bodied as you.
In your actions just stop and think.... is this necessary? What will it achieve?
But you want to know what my doctor says to me everytime I break down crying in his office over someone disability shaming me?
He says: "Talya, if I didn't think you deserved it I wouldn't have signed off on it.... fuck the haters", so you can see why I love my GP so much as he has my back. A doctor wouldn't just hand out a permit if you didn't deserve it.
Yes, there are people who abuse the system, but it isn't your place to think you are calling someone out.
One incident last year: Russ and I were in the car and parking in the CBD, some lady stopped and argued with us for 20 minutes over if we could park there all because my husband had P plates on his car she wouldn't believe that the permit was ours because we were young. Young people have disabilities too and they come in all shapes and sizes.
Next time you want to shame someone, stop and think first.
If you feel you MUST do something to make yourself feel better, go and donate to charity or do something selfless for someone else. Making others feel good is a much better feeling than making yourself feel good for putting someone down.
There is so much anger and pain in the world already, let's not add to it hey.... be more kind to others.
The world needs more love and they say if we want to create change to start at home first.
Friday, October 27 2017
In July 2015, my husband and I met with a local bank, well a credit union, because we were told that they put their members first above their profits and were meant to be a great bank to deal with. We told the bank's home loan manager that we wanted to buy a house asap as I was going to start chemo in September and we really wanted to get settled in our own home sooner than later (knowing during chemo wouldn't be the ideal time to move house). We told him that I was terminal and we just want to start the next part of our lives. We wanted to make a home our own. We said how we wanted a level home as I am in pain and struggle walking stairs or distances. It was this employee that ran the sums and said we could build as it were cheaper to buy a house, so we did!
Now, over 2 years later our bank is using the fact that I have cancer and take pain medication against me, all because we asked for a better rate.
We are currently on a 4.85% interest rate. We keep applying for a cheaper/better rate and they keep declining us... using my cancer as a reason.
This isn't the first issue with the bank this year.
They changed their BSB number and who hosts their cards, as a result EVERY member got new cards which now won't work as visa debits online for purchases which is infuriating. The old cards worked fine. Then the new BSB also meant that no major banks were recognising this new BSB and for months we couldn't direct transfer money from our ANZ account to the credit union which our only option of paying our mortgage was by direct depositing into the offset account and we got charged fees each time.
THEN....☟ ☟ ☟ ☟
We approached the bank to ask for the 3.5% fixed rate they had advertised (was a limited offer). We wanted to fix the loan for financial security and knowing what the loan payments were so we could better set out weekly/monthly budgets; we also wanted to fix the loan due to the uncertainty in the market predicted over the next couple of years, rates were expected to rise, and we wanted the best rate possible.
THEN...☟ ☟ ☟ ☟
The bank said as a counter offer that they would allow us to switch to their OMG home loan (a limited time offer) of 3.8%, so saving 1% in interest to what we are currently paying. Told it was a straight process since we had signed the documents for the fixing and that it would be done without any issues. That was on the 6th of October
THEN... ☟ ☟ ☟ ☟
On the 23rd of October, I got an email saying "there is no definite answer if this variation change will be approved," the email continued "they have expressed concerns regarding your health, you mentioned do to me that you regularly take pain medication to help with your current circumstances, they are worried that you are not capable to sign legal documents yourself and have requested that you have a legal representative or Power of attorney sign on your behalf."
I replied that my husband is my power of attorney and that despite taking pain medication it does not interfere with my cognitive ability or influence my thoughts. I said I run this blog that is well read, I write for other sites/publications too, and that I also launched a magazine that I write/design/edit 100% myself and that I take pride in my work.
I said my Doctor would happily write a letter of support to state that my mind is in good health and that there isn't any issues cognitively.
THEN...☟ ☟ ☟ ☟
The response was " I am sorry that bcu has questioned your cognitive ability, we did not want to come across like that at all, I honestly do feel horrible. [insert institution name] will always have the best interests of our members and that is why we have requested the documentation. You have mentioned previously that you do take pain medication to help, and that you have forgotten if you had made payments to your current loans."
The last comment was taken out of context, when trying to consolidate our debts there was one credit card that had a late fee for the month and when this employee asked why I explained "I have been unwell and had a lot going on healthwise I simply forgot if I had paid it on time and realised the following day but it was a day late and got a fee which is all there".
I forgot one payment (on a card that isn't through their bank), now they are using this against me saying I am forgetful because of having cancer and taking pain meds and that I am unable to do my own banking.
I was told that my banking would need to be done with someone present overseeing things, that I would lose my online banking privileges and my card access too, because you know, apparantly I am not thinking clearly because I am asking for a cheaper rate and I clearly don't understand what I am wanting to do.
THEN... I received this email today☟ ☟ ☟ ☟
To go ahead with offering the lower interest rate "we would require that the variation be signed in front of a solicitor (at your expense), as you have mentioned that you don't believe your cognitive ability has been affected by your medication you are taking we need this to be signed in front of a solicitor to ensure that you are fully aware of what you are signing and they will be required to sign the document stating that you are aware of what you are signing."
To make it more patronising the email said "again we apologise if we made you feel like we are judging your circumstances".
Uhhhhh, how are you not judging me?
You are telling me that I am unable to think clearly for myself and that my cognitive ability is impaired, you are telling me I am not of sound mind enough to be ALLOWED to do my own banking, you are telling me that you believe that I don't understand what I am signing up for simply because I am requesting the lower interest rate to save myself money.
Next, are you going to tell me that the entire basis of your argument that I'm not of sound mind is: because I am Aboriginal? Or is it because I am a woman? Because, that is as ridiculous as you saying that I can't be able to think for myself because I have cancer. It is being prejudicial, patronising and discriminating.
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I feel so trapped, I absolutley loathe this bank, I wish I could afford to take my loan elsewhere.
If I win lotto tomorrow it would be 21 million reasons to not bank with them!
But it is complete and utter BS that they claim to be putting the best interests of members at heart, because all they have done these past months is cause me nothing but undue stress.
I take pride in every single thing that I do in my life, and a large part of that is because of my brain. I have felt my self worth and self esteem feel threatened with each email I receive telling me that I am no longer able to think for myself, it truly hurts me.
I can tell you that my husband is not thrilled about their treatment of me either, and if it weren't for having the home loan with them and being trapped, I would be changing banks ASAP. I will let you know the outcome.
I had given the bank until today 5pm to get their shit together, instead of working with me within reason they continued to patronise me and undermine me. I will be going to the financial ombudsman on Monday and seeing what they have to say.
Saturday, September 23 2017
June last year (2016), I was told I had approx 12 months to live. I then wrote a bucket list of experiences and achievements I want to do and started working my way through it all. I had so much fun living and loving life that the 12 months became a blur. It took me to learn I was dying to really start living life, ironic hey.
One thing I have always wanted was a tattoo, it was more working up the courage to do but also finding something that resonated so deeply to me. Having struggled to feel this conntectedness between ideas, I thought I might best get something custom drawn.
I approached an artist Tasha from Jubly Umph that I loved her work and asked her to create something for me that is so personal and is something that I could continue to feel inspired by everyday. She began working on sketches for me and after some tweaks we had the perfect drawing.
I was so excited when Tasha asked me to write a guest post about my experience for her blog, you can read it here. I talk about my inspiration behind the design and why a tattoo was something that meant so much to me.
When it was my birthday back in March I had some family and friends gift me money with the specific intentions it be used on a tattoo. One of my gorgeous friends Bee gave me an envelope that said "open on the day you go to have your tattoo done" and inside was some cash, I thought it was the sweetest and thoughtful gift.
So the day before I had my tattoo done I got a call to say there was an opening for the next day, I was pretty excited and incredibly nervous. Russ came with me and I am so glad that he did.
My tattooist Megan - turns out is my stoma nurses daughter, what a small world!
I had been researching her studio and work for months, then one day I was in talking to my florist about my birthday the flower crown workshops and I bumped into Megan she gave me her card and I realised who she was and kind of strangely fangirled as her work is so good. So I had complete faith in her work, I was just nervous as I didn't know if it would hurt or not!
The day for the tattoo came, I chose to get the top of my arm done as it is a big design but also so on my bad days I can be laying on my other side and see it and be reminded of my strength.
A stencil was made of the design and placed on my arm to check for placement before the outlines were done, but also to check if the scale and size was big enough. We did this a couple of times as the positioning was off, only because of a mole and scars Megan realised she could work these into my tattoo design.
Now came the outlines, it didn't hurt as much as I thought, just like scratching really. The outline was finished, I got up to stretch my legs and to have some pain meds as I was sore from tumour pain before jumping back in the chair. I remember feeling so proud and excited! I felt on top of the world!
Now came the next part, the colour!
BOY DID IT FREAKING HURT!
I was doing okay until about a third of the way through and I was just bawling my eyes out. Russ was standing next to me holding my hand and I was a blubbering mess.
I now understand why you get it done in stages, I just felt like I was buff but I felt like a sook and was so embarrassed that I must look weak. I left and got in the car and just cried and sobbed, it hurt for a week or so afterwards too.
Best thing to help soothe the itch is this ointment from Woolworths called Dr Pickle, it really helped to moisturise it when it was dry and helped to fight the urge to itch it too.
I was really happy with the tattoo and the artist really did an amazing job at bringing the artwork to life. If you wanted to see more of Megan's work you can find her on Instagram under @meganlouisebucks.
It has now been 5 months and the tattoo is looking so good!
I have had a lot of compliments on it, have had a few opinions from others but at the end of the day what I choose to do with my body is my own choice and when people get too judgey I just fired back with "I am dying so who really cares HOW I choose to live out my life, STFU". I am so over comments telling me how I should live out my days. I am only trying to do what makes me happy and to squeeze a lifetimes worth of experiences into the matter of months and days, so I am doing my best.
One shop I went into the salesguy was telling me how trashy I was because I had a tattoo and asking Russ what he thought about his wife ruining her body like that and how it reflects on him, Russ was pretty great and had my back but it took so much strength to not punch him in the face. Like seriously, how does me having a tattoo affect my ability to be a customer. Do you want my sale or not?
I did hear comments like "your dad would be so disappointed in you and would be rolling over in his grave, if he were alive he would disown you". That one comment stung though, but I do like to think that if dad were watching from wherever he may be that he would be proud of me for choosing myself and for choosing to do things that made me happy, I would like to think that he understood out of anyone how hard it is to go on living your life knowing that anyday it could end, I would like to think that no matter how I lived my life in my final months that he would proud of the person I have tried to be... I always put everyone else before myself, so I wanted my bucketlist to be about me and doing things I wanted to do.
Before 12 months ago I didn't really feel that I had any idea or sense of who I was as a person, I do feel that I am starting to find myself and finding how amazing life is when you stop and look around.
It took me dying to realise just how beautiful life really is.
But my tattoo has become a reminder for myself that I am a badass and that I am strong, on my worst days I need this reminder, some days I need to know that beneath all these health issues there is still a young 26 year old woman trying to hold on.
Guest post on my tattoo story
Do you have a tattoo? Was there a meaning behind it?
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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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.
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
Myth: A doctor can kill any patient and can cover it up by saying it was an assisted death
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
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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!
Thursday, September 21 2017
This is not a sponsored post, we purchased the car using finance through the car yard, not a brag post either just celebrating a milestone I never thought I would be alive to see.
A year ago today I experienced 3 things I never thought I would ever live to experience such as purchasing a new car with a big red bow on it or even buying my dream car of a Hyundai ix35...
One was also driving a car again. 18 months earlier I was unable to drive a car due to a large rockmelon sized tumour that sat under my stoma, As the steering wheel already sat on my stoma and stomach already it was near impossible to drive safely or comfortably. Then I got the PICC line in and that made things difficult, then surgery and chemo again I really wasn't up for driving at all. Plus everytime I drove it was painful as I felt every bump in our old car.
So imagine how excited I was to drive again!
It was great timing too as we had just moved out of town Russ needed to take the car to Coffs for work and I was stranded at home without a way of getting to the shops or doctors/hospital if I needed to, so a second car came in handy at times.
I don't think I could have lived and experienced as much as I have this past year without this car, this was one of the best decisions we have made. Yes we were struggling week to week drowning in all the debt, but the car gave me so many memories and opportunities to get out more.
This car has seen so many adventures and so many conversations, and many games of i-spy. We started our own game versions including "name all the different types of wood" and "name all the different names for water" and so many other nerdy variants of I-spy. Russ even compiled a playlist on his phone of perfect Talya and Russ road trip songs.
I never realised a car could help me to live life as much as this new car has, being higher off the ground it is a lot easier for me to get in, as it is also higher it is easier for Russ to get the wheelchair in/out so he is more inclined to want to go out.
The car even has butt warmers, these help to keep my back and bottom warm which helps with pain, stiffness and inflammation. I only discovered this 2 months ago and would have made all the long road trips and day outings better if I knew earlier!
I have been to Sydney 3 times on bucketlist adventures for the Dixie Chicks, Royal Easter Show and Vivid. We never would have gone to Sydney via road if it weren't for this car, our old car wouldn't have made it and only option would have been to catch the train which is double the time.
This car has brought so many beautiful memories and I look forward to more with Russ thanks to Betty our ix35.
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:
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.
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:
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?
Keep in mind:
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#3. Search on facebook for groups or support groups:
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.
Keep in mind:
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:
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).
Thursday, July 06 2017
I know I am pretty slack when it comes to updating posts on my blog the last few months, I have been having fun microblogging over at Facebook and Instagram as it has been more convenient to do updates than to do a blog post due to my health (and sleeping 20 hours most days). If you're interested in knowing or understanding more about what goes into a single blog post and why it can take hours to do one post, the wonderful Micheala from Not Another Slippery Dip recently shared an insightful post which you can read by clicking here!
Sometimes the internet can be a beautiful and magical place,
So all the way back in March (I told you I've been slack with my posts) was Russ The Ostomistic Husband's 37th birthday! What eventuated from me feeling guilty that I had ruined his birthday actually became one of the most beautiful gestures I have seen from people from all over the world!
On that same day I was being admitted to hospital for a bit of a respite break and to get my pain under control, it had been weeks since I had felt some relief.
Russ had to work that day, so it was a pretty early start for both of us as we packed my bags and Russ got ready for work and dropped me off to the hospital before he headed to work. Thankfully, my room was ready and available (surprised as it was 7.30am) and he helped me to get settled before he left.
But I felt immense guilt, it was his birthday... his day to be spoiled and showered with love. After all he makes me feel loved everyday and especially made sure I knew how much I was loved by others with the gofundme page he set up for my garden, so I wanted him to know just how many people care about him too.
What came next:
After chatting with my friend Kylie from Kidgredients in the lead up to his birthday, she suggested putting a call out on social media and asking people to write "happy birthday Russ from __insert location here__" and then take a photo of that piece of paper with a little bit of the background.
I went out to dinner with Russ the night before I went into hospital as we both had a free steak from Hogs Breath as our birthday steaks (a part of the frequent diners club you get a steak during your birthday month), so while Russ was at the toilet I took the chance to write my birthday message on a napkin and ran outside to capture it. In the background above is the iconic whale fountain.
What came next from my post was unexepected!
I was blown away by the response and all the thought and love that was being sent my way.
I even felt like I had travelled the world in one whole day, and seeing all the locations - my heart was heavy with love and excitement knowing how happy this made me feel- I knew Russ would feel the same way!
So once all the images were received (there were hundreds!) I then sent them over to Kylie who then turned the collection of images into a video slideshow!!
Sadly, not all could be fitted on the slideshow and if yours didn't appear please don't fret as Russ sat there individually looking at them on my phone for the next hour, so it wasn't forgotten or unseen and he appreciated it so much.
So 5pm came around and shortly after Russ arrived at my hospital room. I then filmed him and his reaction on facebook live, which you can watch below.
Russ sat there re-watching the slideshow a few times and even sat there for a long time scrolling through all the photos. If you couldn't tell from the video above he was in tears. The love he felt and knowing that so many people cared enough to take time out of their busy lives to do this, really meant so much to him.
Russ is one of those amazing guys who does so much for others without hesitation or needing to be asked and he doesn't ask for anything in return. He is the most loving, caring, kind and compassionate person I know: and he deserves to be recognised and rewarded, even if it was just for one day - his birthday - it just meant so much to him.
It is hard most days just knowing how tiring it is for Russ to work full-time and be my carer too, as well as dealing with the rollercoaster ride that is my cancer journey. Some days he is surprisingly strong, but other days he struggles and looks exhausting... it is hard seeing how taxing all this is on him, so I just really wanted him to know how loved and special he is.
I am so grateful to Russ and for everything he does, he is one amazing guy!
I just wanted to say a special thank you again to everyone who made this happen and a special thanks to Kylie from Kidgredients for all the time and love she put into the slideshow for us. Kylie has some delicious recipes on her site, especially for kids and lunchbox foods, even delicious snacks that are easy to make. Be sure to pop by her site - you won't be disapointed!
Kylie, thank you again for this special memory Russ will never forget, and most of all thank you for being one heck of a wonderful woman and friend. You helped me to create something truly magical.
Tuesday, June 13 2017
“Life is 10% of what happens to us and 90% how we react to it”
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.
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.
“Life always offers you a second chance… it is called Tomorrow!”
Sunday, April 09 2017
One thing that I have noticed time and time again since I have been sick and spending a lot of time in bed, is that I often felt uninspired and unmotivated. I feel if I wake up happy or feeling somewhat inspired I usually have more energy to tackle the day.
It all started when I was having chemo, I was so sick from chemo that I spent almost 6 days out of 7 in bed and feeling like absolute shit house. My room didn't inspire me at all, I had a beautiful and comfy bed (a must when you're sick) but as we were renting hubby was reluctant to let me make the room my own. We knew we would eventually be moving house and it was just more things to have to move.
So in June I stopped treatment and entered palliative care.
A week or so later I went into pillow talk and my brief was "I need a quilt cover that will inspire me, motivate me but make me feel happy". I found the perfect quilt with the thanks to a sales assistant, who was undergoing chemo herself at the time and she really understood how important it was for me. I wrote away thanking her and Pillow talk HQ.
It has been 6 months now since we moved house and aside from the quilt and a print on the wall, it still felt like I was missing a little bit more. I had a bed side that felt so clinical and reminded me of being sick every time I woke up or rolled over, it was covered with needle bins from my clexane or boxes and sheets of tablets strewn over. It really reminded me every day that I was sick, and it had really gotten me into a funk of late.
So I had been planning a little bedside table makeover for a while, well had talked about it.
It is school holidays and 2 of my siblings (Macka 14, Carson 12) came up to help me do things around the house, so we decided now was the time to makeover my bedside table but also my bathroom vanity.
So I am sure it ended up being the most memorable house clean or bedroom makeover they've ever experienced!
We emptied all of the contents off my bedside table into a basket to go under the bedside table for ease of access, then we dusted it down and went about the house finding items I had been collecting or already had.
Some of the items had been found on clearance or at a cheap price.
So I found some books on the bookshelf that I got for Christmas and have been meaning to read, and from all the images I have seen of "pretty bedside table stylings" it usually has books stacked on. The marble canister is good for hiding things like remotes for the fan, tablet sheets or jewellery.
My brother said it had to have a necklace in there too.
So this is the after, and while I am no interior designer, I am feeling pretty proud of how this looks... and I don't feel like I am reminded of being sick everytime I roll over.
So now the memorable (and humiliating) part to the story....
The basket wasn't fitting in the cupboard when we knew it should and was as if something was blocking it. The door was closing but was still ajar.
My sister reaches behind the basket and pulls out a red dildo (I hadn't seen it in about 5 years and didn't care for it) so I had no idea that it was in there, so my face I assume was as red as the adult toy.
I still feel so embarrased, haven't felt so humiliated in a long time, but it will be memorable story to tell in many years time or after I am gone. I did try to say it wasn't mine, they laughed and said "what it is Russell's?" which had them even more confused when I said it wasn't... how embarrassing indeed!!
"Hey, remember that time at Talya's when we were cleaning her room and found a giant red dildo in her cupboard".
I can now pass on knowing at least I have left them with one solid and hilarious memory.
Note to self: KNOW where you have hidden such toys, preferably in a safe place no one will EVER find again.
Saturday, March 04 2017
A year ago I was in hospital in Sydney recovering from major surgery, when some 6 weeks later I was being discharged and ready to head home. It was a 8 hour trip home and my shoes went missing, so I only had my black slippers and I had hoped we weren't stopping anywhere.
Turns out we stopped at not one but two RSL clubs for lunch, the first was full so we drove until we got to Karuah RSL club... so it was embarrassing! My uncle that day drove 16 hours to come and get me and bring me home, what a legend!
As I was preparing to be discharged I got the phone call to say that my little nephew had been born. His poor mum had such a long labour with him and I was relieved when the news came that both mum and bub were safe and healthy. I arranged to stop in on the way home to see my nephew and meet him for the very first time.
I was the first of his many aunts and uncles to meet him and I got a cuddle with him. He was absolutley precious. I felt a special bond with him that day that I could have sworn he smiled at me.
Over the course of the past year, I got to have many more cuddles with him. Each time he smiled at me and each time my heart felt like it was breaking, as I just didn't know how many more hugs I would get or if I would get to see any of his milestones. I cherished every minute I did have with him.
So when his first birthday was approaching, I was nagging his parents back in December with "have you thought of a theme yet", I was met with "His birthday is still 3 months away yet, we have plenty of time".
But I didn't know if I did.
I worried about missing his birthday or if I suddenly got too ill and was unable to make the day or if I would even be alive for his birthday... it is all very unsure at times.
When you are living with terminal illness, everyday you do wake up is a surprise, so I have been so determined to make sure I am prepared and not leaving anything unfinished.... so for me I needed to feel safe in that the invites were designed and printed and that I had contributed to the day.
So January came around and I was asked to design the invitations and that it was a construction theme. Well, boy did I have fun! I wanted it to be fun yet sophisticated but not too cheesy. I wanted to add a photo of him smiling, his smile and laugh is infectious and it just makes you feel so happy.
I also designed some other wares for the party (various signs and what not).
Being involved in the planning of the birthday and contributing meant a huge deal to me. It is my fear that I will die and be forgotten or that Leo would grow up and not remember me. I cry tears of despair and frustration often, about the fact that I would miss so much of seeing him grow up. It's not just him but also my siblings that I am upset about missing out on things, it is missing out on everything and missing major milestones like weddings, graduations or first child....
So I had hoped that looking back on the day Leo could be told "Your Aunt Talya designed your invitations" and that he would remember from photos that I was a part of that day.
Don't get me wrong, I'm not setting out to make his first birthday all about me, but just sharing how I feel facing terminal illness and participating in milestones knowing the ones I will miss. Maybe documenting how I feel might help someone else who is facing a similar situation to know they aren't alone in their feelings.
On the day:
We arrived around 10am, I was a little late as my stoma that day decided it was going to misbehave and leak.
I was really impressed with how authentic the setting out of the birthday looked - true to a construction themed birthday.
There were construction signs and barriers, there was a wheelbarrow for the gifts with a sign I made that said "dump your gifts here", there was a table with a sign alerting people to a hard hat for people to sign as a keepsake momento of his first birthday, there was a lovingly made (bu his mum) construction cake which he devoured and loved, and he was even wearing a kids sized fluro work shirt too!
One of my memories of the day was when Leo stood and danced and I saw for the first time him taking steps. I won't forget how much fun he had with the cake, he even was lucky enough to have 2 cakes (one was a cake smash, a family tradition) and there was cake everywhere.
I struggled for months thinking of a gift for his first birthday, knowing full well that he would get a lot of toys, I felt it needed to be something that was unique and precious.
I decided on getting him a star, it is in his constellation (Pices) and it is meant to be able to be seen from his house. I named the star "Sempiterno Leo" which translates to "Leo Everlasting" in Latin. I wanted his gift to be something he could always feel a connection with me when he saw the star, especially as I love star gazing and astronomy.
Besides, how many 1 year olds can say they have their own star!
I am trying my best this year to really live and make the most out of each day I am given as I just don't know if it'll be my last.
Leo, thank you for the wonderful year of smiles and memories. I am so proud to be your Aunt and I know that you have a whole tribe of people here to support you and protect you through life. No matter what throughout your life always know how much you are loved, how important you are to so many people and that you are never alone. Know I love you a lot and will always be looking out for you.
To his parents Max and Tahli, Thank you for really letting me be involved in his life and for helping with his birthday. It truly meant so much to me and helped with the guilt I was feeling for missing out on future milestones in his life. You have raised an incredibly bubbly and gorgeous son and I am proud of how great of parents you are to him. He is the most happiest baby I have ever seen and I am so happy he came into our lives. Never doubt yourselves, you are doing great.
Monday, August 22 2016
NB: This post is purely satirical... proceed to read with sarcasm
Recently, I was called Gross.... I was asked "how can you live like that?"
Well, I can and I do, and it is pretty simple. I wake up, I live my life and do stuff through the day and then I sleep... and repeat! See, easy!
You see, my daily routine is somewhat similar to a 'normal bodied routine'... I say somewhat as it is slightly different as it involves me essentially shitting myself 24/7 (oh the horror) but I can point out many similarities to our daily routines...
A typical day of mine goes like this:
7-8am: I wake up in the morning, and one of the first things I do is go to the toilet. Nothing like that first pee in the morning, except I also have to empty my bag. Which is usually mostly air, as most people fart all night. I fart too, just you don't smell or hear mine as it is trapped in a stoma bag.
8.15: I am sure this is where you take your coffee, the one thing that you probably need to get you through the day? I consume something too, my medication (thyroxine, endone and folic acid), I need these to survive and can't live without.
8.20-8.30: Just as my husband is getting ready to leave for work I call him in for a quickie.... he quickly jabs me and he puts on his shoes and then is off on his merry way. Then he can rest easy all day knowing that he helped to keep me alive that day with my blood thinning injection.
9-11.59am: The elusive siesta... some might call it sleeping in, some might call it taking a nap. You probably prefer an afternoon nap, but I have mine in the morning so by lunch time I am wide awake.
12-1pm: I have lunch.. this may vary day to day from leftovers the night before to eating dry crackers. If I am feeling adventurous I might even go out for lunch.
1-5pm: I would call this my 'work time'. I only have a 4 hour work day and mostly my work involves writing a blog post, designing fun little pictures.. who am I kidding, I am on facebook and shopping.
5.30pm: My husband comes home and cooks dinner. Dinner is usually something fancy like bangers and mash. In our household we aren't atypical to the stereotypes of the roles of a 1950's housewife; my husband does the cooking, the cleaning and the bringing home of the bacon.
6pm: We have dinner, talk about our days (he acts like I actually did more than just sit on fb all day) and then we just watch netflix and chill
7pm: We have our showers, everyone needs to shower. I just happen to need to do a bag change afterwards.. No biggie. We all need to change our underwear everyday (and my stoma bag is the underwear of my stoma)
7.30pm: Husband goes to the study and does computer related stuff (as he hasn't just spent all day around computers) and I go to my office (the dining table) and belt out songs. This goes on until bedtime.
8PM: Husband comes to give me another quick prick for the day, ensuring that he has kept me alive for the night.
10pm: We head to bed and read. Well, he tries to read; I just try to have a chin wag and nag at him about what he didn't do or needs to do the next day.
Annnnnnnd then I go to sleep.... and get ready to repeat it all the next day!
So that is my typical day, but also throw in having to do a bag change whenever I just decide to shit myself (you know because I have control over that and all).
So I am sure there are many similarities to our day... we all eat, sleep and shit. I just do it a little differently to you, but doesn't make me gross. Who wants to be normal when you can just be unique?
Oh, and having a stoma isn't the worst thing in the world.... some people have a stoma as it was either that or death.
It can be rather convenient too!
Imagine you're standing in the long queue at Big W to do the no deposit toy laby, and all of a sudden you need to do a poo! Oh what are your options? Either leave your trolley unattended in queue while you run off and pray that no one steals your loot or your spot in the line, or you just stay and wait and have an accident? Well, for me I can just do a number 2 at any time of the day and it conveniently collects into a pouch (that doesn't smell I might add) and then as it is full I empty into the toilet. No more missing out on sales for me!
But tell me, aside from now pooing differently has your life changed too much with a stoma?
I ask (if you feel inclined to) that if my blog or my writing has helped you or made a difference in your life, please consider treating me to lunch or a mango smoothie by clicking through to my paypal.me account.
I am mostly housebound so being able to go out for a nice treat would really help make my day that little bit brighter. Would also help me to feel appreciated too.
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.
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.
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.
Monday, July 11 2016
Canteen is an organisation (charity) that provides support and help to young people (like me) aged 12-24 to help them on their cancer journey. You might have heard about Canteen through their National Bandanna Day campaign that runs annually each October.
When I was younger I had a beautiful little sister who was fighting her own intense cancer battle, and canteen helped our family out with support and ever since then and after my sister's passing we continued to support Canteen through their National Bandanna Day, our way of saying "thanks for the support".
It wasn't until after my dad died in 2012, that we realised that Canteen was there to help us through our dad having cancer and then dying, we thought it was just for people who had cancer and didn't know we could join too.
It was a few days after my dad's passing and my siblings weren't coping, so I looked into signing us up and a short time later we went on a 'New Member's Camp' where we weren't the only new kids on the block.
What I didn't know at the time was that I had found a place where I belonged and could turn to when I needed support... I also didn't know just how much I would come to rely on Canteen.
After the camp I kept in contact with the staff at my local division and accessed the counselling support.
Late 2012, I was told that I had early signs of bowel cancer and that I required my bowel to be removed in the coming months. I turned to Canteen for help and support as I made the decision to have my bowel removed and live the rest of my life with a permanent ileostomy.
Because of my surgery I didn't go on any programs during 2013, mostly out of anxiety around living with a stoma but also I was in and out of hospital with pancreatitis that I just kept missing out, which again happened during most of 2014. I was going on an over 18's program but instead was in hospital the day before camp started.
During this hospital admission they did a scan and found there was a tumour, I then travelled backwards and forwards to Sydney for consults with specialists and having scans done.
Canteen were fantastic, the staff touched base with me each week and when they were in the local area they would invite me to coffee to see how I was going.
I decided to say thank you to Canteen for their support and organised a Halloween themed high tea fundraiser, which was an absolute blast and success raising $1200 for Canteen and is an afternoon that guests still talk about.
Then in early 2015 I had a PET scan and it showed my tumour had now doubled in size, I had a new tumour growing and that I also had thyroid cancer.
I turned to Canteen a lot during this year, and I was involved a lot as a camp leader or helping to plan different programs (even though I wasn't able to attend for health reasons). I offered up my graphic design services and would design different flyers and posters or invites for camps, I loved not only having something to do but to help in my own way of saying thanks for being there for me.
I actually just got home from an Over 18's program, and I am so glad that I went... During the past fortnight I was told my chemo was to be stopped and that there were no more treatment options going forward and that palliative care were called in to help manage my pain and symptoms and to help me feel more comfortable.
The past fortnight has been extremely tough to deal with, and I just really needed to escape and get away and just talk to people my own age with their own experiences... to talk with peers who 'get it'.
I had so much fun on the program, and despite being in a lot of pain I really enjoyed myself. The staff were amazing going above and beyond to help me, and the member's who attended were so kind and accepting.
To be honest, Canteen is the one place that I feel accepted and valued and not judged, and I think that is why Canteen works so well.... it is a safe place for you to explore your feelings and dealings with your cancer journey and you are surrounded by people who are as well.
I honestly don't know how I would have gotten through and navigated the last few years without the support and help from Canteen, and for that I will always be thankful and appreciative of all the times that Canteen was there when I needed them.
I age out of Canteen this year, so that was my last camp. I still plan on keeping in contact with the staff and offerring my graphic design services. But I have made some amazing friendships through Canteen that I will continue to cherish and keep in contact with.
If you are a young person aged 12-24 in Australia, or know someone who is affected by cancer (whether it be themselves, their parent or sibling who was/is sick) please let them know about Canteen by clicking this link.
Saturday, July 02 2016
I had my scan a month ago to check on my tumour growth and if it was responding to chemo or if there was any new growth. The scan showed a couple of new developments and one massive surprise.
I found out that my tumour was stable and showed no new growth or shrinkage (the surprise).
The two new developments were that I have a 17cm mass on my ovary and I also have 2 large blood clots (Pulmonary Embolisms) in my lungs.
I was called back to the hospital that day and taught how to inject myself with clexane needles twice a day. I was in shock and rather upset and my amazing husband took over and has since been giving me my twice daily injections.
I was so shocked as it was an incidental find and if it weren't for the oncologist bringing forward my scan by a fortnight I could have died... and as much as I thought I was okay and at peace with it....
Turns out I am not ready and that I still have so much life to live.
I thought maybe I did something wrong, but my doctors reassured me that I didn't. Apparantly the chemo and cancer combo can lead to blood clots due to my blood not clotting right... the only symptom I had experienced was a cough and shortness of breath.
So I have to have my injections twice a day.. my husband comes and gives me one in the morning before he leaves for work (along with my thyroxine medications) and then the other is at night before bed. I need to have these injections for at least 3-6 months.
Some tips if you need to have clexane injections:
#2. Find an area that has more fatty tissue so you can kinda pinch the skin, I find the fattier part of my thigh hurts less
#3. After you receive the injection gently rub the area or tap on and around your thigh, it helps to relieve the pain and I don't know how but it just really helps to relieve the sting.
P.S if you are experiencing chest pain that is new or shortness of breath that is also new, please don't hesitate in seeing your doctor or presenting to the emergency department at your local hospital
Monday, June 20 2016
It was almost a year ago now that my husband and I finally got a pre-approval for a home loan, after trying for over 6 years!
We were looking into buying an established house, and then a townhouse within a resort (but the strata was over $12k a year), so we were back at buying an established house. But we struggled to find something within our price range and budget that didn't need work done to it or had a pretty decent (and not squishy) bathroom.
But we couldn't find one that we fell in love with.
We then thought about buying either a block and building on it or a house and land package. We were out at Woolgoolga (where we have been wanting to move to for 6 years) and found the perfect house and land package that was well within our budget (and meant a little left over at the end for incidentals).
But when we enquired that afternoon, the contracts had just been put through and signed and was no longer available.
We felt a little disappointed that we missed out, but on the way home I decided we would call into the display home at North Sapphire Beach and just ask if they had any others coming up in the area within our price range.
The sales guy said there was actually a bigger block of land that was also cheaper that had come available that morning (due to finances falling through) and if we wanted a bigger house than the other house and land package offered that it was certainly affordable... all we had to do to secure the block so it wasn't available to anyone else was pay a deposit of $1000 which we did on the spot (we weren't letting this one go).
So fast forward to November and the land was finally registered with council, which meant we had 28 days to finalise our finances and sign the contracts, which happened a couple of days before Xmas... what an expense Xmas present to us!
So it wasn't until March this year that the slab was laid and the framework started, and we have been told last week that we are at the 4 weeks to completion mark, and I just cannot wait!
But during the process of building, especially as this is our first house and we have never built before, there were some things that we hadn't factored into our budget or allocated money to, and I thought that I would share these in case they help you too.
#1. You start paying electricity bill when the house starts getting built
#2. Budget in an extra 2 months of rent to allow for delays
#3. If you are renting, consider cheaper options to live to make building and living easier
#4. Really know what is and isn't included in your build
#5. Ensure that there is insurance on your house from the moment construction starts
#6. Ensure that your insurance is ready to kick in a couple of days before the hand over of keys
#7. When buying furniture or planning your space, take your house plan and measurements.
#8. Prepare to need to upgrade somethings as the house comes with very basic versions
#9. Before the build starts make a inspiration board
#10. Try and allow money for turf, fencing and blinds
#11. Consider buying giftcards to coles or woolworths for those weeks where money is tight
#12. Go into the tiler supplying your build and play with tile orientation
I am sure that there is more to add to this list, so I will continue to add to it and edit it as I think of new list additions. But for now, I hope these 11 tips help you if you are considering building a house.
Friday, May 20 2016
When I talk to a lot of my friends or peers who aren't sick I realise just how different our current life stages are.
I have some friends that are busy planning their weddings (which I am loving being involved as I just love LOVE and weddings and all things happy) but I am at the stage of my life where I am planning my funeral and my list of wishes I want to do before I kick the proverbial bucket... but just because I am planning my funeral doesn't mean I have given up or that I am not being optimistic or ostomistic I should say about my situation.
While I feel a little sad that this is my current reality, I am in no way giving up so please don't tell me that I am.
For me, planning my funeral and writing a bucket list or as I prefer to call it my 'happy list' I feel is somewhat empowering and it makes me feel I have control over my situation, and control is something that is often lacking when you are sick, especially terminal.
Why is it empowering you might ask? Well it is simple really... it means I have control like I said just before, but it also means that when the time comes my family and husband won't be left wondering what I wanted to have done.. and I have seen the arguments over funerals and who organised what or didn't organise and I want to spare my family that extra stress when they are grieving... albeit they will have to make arrangements and finalise the order of things like flowers and food as I don't know when I am going to die (and this is the hard part about planning your funeral). But I am planning on having everything written down and instructed and planned so all they need to do is make a couple of phone calls and order things... I want it to be simple for them and want them to feel stronger that they don't have to make these decisions.
One thing I am struggling with is having my family and friends involved in helping me plan my funeral.. which it will be more a party/memorial service as I plan on being cremated so there won't be a body. But, no one is wanting to help me and I understand it is hard for them but I just wished I could talk openly and be supported without feeling like I am upsetting them. And I don't want them to read this and feel obligated in anyway to talk with me or help me plan, it is just one of the hard things about my situation is that it is hard on those who love me.
I want a party like service where everyone is to wear colours, and I want to find bio-degradable balloons that I can have released, I want bright flowers, I just want it to be bright and bubbly like me and not dim and black and depressing because that isn't me.
I am working on a concept for my funeral called a 'waste free funeral' where things like flowers can be donated to nursing homes or people in hospital doing it tough to make their day brighter, or left over food to be given to homeless shelters or like the balloons I don't want them to impact on the environment. I want to have a great send off but I don't want to hurt the environment or others, so I want to give back where I can and this is my way of doing so.
But please, if I am wanting to talk to you about my funeral and I am all happy and chirpy please just think about what you're about to say as it hurts me when you say things like "well that is too depressing to talk about", or "why are you giving up" because I don't want to do this alone and I am not sad or hurting about this decision... as I keep saying it is making me feel empowered.
Sunday, April 10 2016
We know that chemo can be toxic to ourselves and we can get sick, but did you know that it can make those around us sick too if they are exposed.
Before I started chemo, I was invited to attend a chemo education session where I learnt things about treatment, nutrition and what it means to be cytotoxic.
When you have chemo you are considered 'cytotoxic' for the next 7-10 days. This means that your bodily fluids such as urine, tears, sweat, saliva, semen, poo and blood contains chemicals that can be toxic to others if they are exposed to it. They can be near you and not get sick, just as long as they don't come into contact with your bodily fluids.
So when you have chemo it is important that you be mindful of what you're doing to help protect those around you.
Here are 10 steps I take to ensuring the safety of others around me when I am cytotoxic
#1. Double flushing the toilet with the lid down
#2. Try and use one toilet for my use only
#3. Don't share drinks/cups
#4. Don't share food/utensils
#5. Use condoms if having sex even if it is just oral
#6. Double line your garbage bags when disposing your stoma bags
#7. Make sure you have disposable gloves handy
#8. If you are holding a newborn
#9. Wash soiled items seperately
#10. Wash your hands and make sure others do too
Saturday, February 20 2016
For those who have been following my facebook page would know of my struggle the past several months involving a rather aggressive and fast growing Desmoid tumour that was causing me issues and making me sick.
I haven't blogged much about my tumour and experience, just been mirco blogging on my facebook page. But today, I am wanting to write about my most recent experience which involved having the tumour removed and having a new stoma created.
According to the Desmoid Tumour Research Foundation a definition of a Desmoid Tumour is that these "... are tumors that arise from cells called fibroblasts. Fibroblasts are found throughout our body and their main function is to provide structural support and protection to the vital organs such as lung, liver, blood vessels, heart, kidneys, skin, intestines etc. and they also play a critical role in wound healing. When fibroblast cells undergo mutations they can become cancerous and become desmoid tumors (also known as "aggressive fibromatosis")..."
These tumours can be slow growing or extremely aggressive (which mine are) and can become life threatening when they locally invade or restrict on structures, organs or blood vessels.
I had two tumours (now I have one) both in my mesentery and one is also deep in my abdomen compressing on my kidney and also presses on my stomach and back often causing me pain when I walk short periods or am standing for a few minutes. Hell, even having a shower can quickly become rather painful and tiring! For those at home wondering how big this beast is, it is the size of a watermelon... but this one won't be surgically removed (too risky) and is the one that I have been told will eventually kill me over the next few years and the aim of the chemo is to try and shrink it or stop it from growing before it causes too much damage.
The tumour that was removed last week was the size of a rockmelon (see image below of side on view of my stomach) and has since left me with not only a huge cave-in of my stomach but a new stoma which I am trying to adapt to but it is proving to be a challenge.
Surgeons are usually reluctant to remove these tumours due to their aggressive recurrence and because the more surgery you have the more chances for more tumours to appear, especially when you have a genetic pre-disposition to these tumours caused by FAP.
But, the reason my tumour was removed was because it was dying inside (turning necrotic) and was causing infections, ulcers and fevers and it was decided that it was best to remove the tumour now in hopes of preventing further issues and to make me better enough to FINALLY resume chemo to work on the other beast.
So I have been in hospital since New Years Day back home in Coffs Harbour with the exception of a week where I got to go home, but then I was readmitted there for 10 days while I waited for a transfer to Sydney to have surgery. So I got to Sydney via air ambulance on Tuesday the 9th of Feb and had my surgery on the 15th of Feb.
The surgery went well and I was up walking the next day and had impressed the doctors so much (and myself for that matter) with how well I was doing that they were ready to send me home last Thursday. But my swelling went down on my stomach, and my stoma changed too and my bags no longer were sticking and getting a good seal so it kept leaking.... and leaking... and bloody leaking!
In a 24 hour period from Thursday to Friday I had experienced about 8-10 bag changes, I lost count, and my poor skin was so raw and sore it was quite uncomfortable. Then Friday to Saturday I had almost 24 hours without a leak, then the last 24 hours have experienced about 6 bag leaks and my skin is so sore I just want to cry!
It is so hard adapting to this new stoma, especially when it is so different comparitatively in size. My old stoma I miss so much as it worked and very rarely leaked, where as this one is so small and it is now sitting in a crease in my stomach where I never had a crease before the surgery, but worst of all it has become retracted and is under my skin.
As I said, I am REALLY missing my old stoma and struggling to like or adapt or feel confident with this new one. I know I needed my tumour removed and I know long term it should prove beneficial, but I am struggling to see the ostomisticness right now... which I feel like such a fraud as my blog is called 'optimism with a stoma'...
I know I have gone through this before, it was 8 weeks of constant leaks before I found the bags that worked for me and then I fell in love with my stoma and the new life and freedom it gave me... but I miss that freedom and confidence and just hope I can perservere and one day will fall in love with this new stoma too.
It was almost three years that I had my first stoma, it had become such a huge part of me and who I am and I know this will sound strange but I do feel a little bit of grief and loss over my stoma. I am not only grieving for my stoma but my independence, dignity, confidence and freedom.
If my tumour hadn't attached itself to my small bowel and stoma I wouldn't have lost such a HUGE chunk of small bowel, and they would have had more bowel to work with to create this new stoma rather than opening me up to dig more bowel out and opening me up for more risks of tumours and complications.
I know it is a process of trial and error, I just have to get through this next bit to fully accept my new stoma.
Tuesday, November 17 2015
Recently, my 18 year old brother graduated from year 12 and in the lead up to his final year 12 exams I gave him a piece of advice that I wish someone had of told me when I was undergoing my HSC in 2008.
I told my brother that no matter what his final marks were, that they didn't dictate his future or his ability to succeed. I told him that I loved him and all I expect is that he do his best and be happy with how hard he worked.
I wished someone had of told me that I was worth something even if I didn't get that perfect 83 that I wanted... or that someone told me that I wasn't a failure because I didn't get that mark. I felt so much pressure to get the perfect grades and that if I didn't go to university my life wouldn't amount to much without that university degree and a huge debt.
While my HSC marks were great (lowest exam mark was a 79 for Extension History *cough* nerd *cough*) because of my grade my university admission mark was only a 55.5, which I only JUST scraped into uni for Nursing (which I had to cease studying due to health reasons) but I until recently have felt like a failure because I am 24 and have no solid career or university degree.
But it took me telling my brother that his life won't be over if he doesn't get into uni, to realise that my life was never over when I didn't get into the course I wanted or because I didn't finish that university degree.. instead I have had a pretty interesting life the last few years and I have done my best to grab life by the metaphorical balls and to make the most of it.
I am a big believer that when one door closes another door opens, and that opportunities exist everywhere you just have to be looking for them!
I always wanted to have a career in health helping people and I thought that it was because I could do so through nursing. But I have since learnt that I can achieve this through my blog and writings and that I want to be a social worker and counsellor. It was through my nursing studies that I realised I was more interested in the holistic picture and the social aspect of my studies and that I can make a difference in other ways. Then I started my blog when I needed to have my bowel removed and an ileostomy, when I couldn't find ANY resources pertaining to life of a young female with a stoma, and so began Feeling Ostomistic.
This wasn't the only opportunity I have found by chance.
I know I don't talk about it a lot, being a taboo subject and all... but I suffer from Borderline Personality Disorder and as my way of coping (in a healthy way) I turn to crafts and keeping my hands and in turn my mind busy so that I can distract myself... this had always been sufficient in helping me to cope. That was until I was diagnosed with FAP and dealing with my dad's terminal bowel cancer when I realised I needed something more dynamic.
So I turned my coping mechanisim of a creative outlet into a cottage enterprise Made With Love Cards And Crafts, where it quickly turned into a busy little handmade business that became respected not only around Australia but globally too (with products being sent to Ellen Degeneres!!). I had eventually gotten so many orders I had waiting lists and had to turn clients away as I just couldn't physically do all the work. But then my health got the better of me and 18 months ago I stopped taking on orders as it got too hard being in hospital. I sometimes do the occasional card for family or friends but haven't formally taken orders for a while...
But because I now had no creative outlet and was spending weeks and months in hospital, I quickly found myself feeling down and in a bad place mentally. I knew I had to find another creative outlet and venture that could be fulfilling of my creative needs, that was busy and kept me distracted, and also was mobile so that it could come to hospital with me and didn't require being made or supplies.
Then a lightbulb moment happened, and I decided to invest in myself and start Goding Consulting where I offered graphic design (logo, flyers, business cards) and assistance with setting up social media pages. This was a business that I had the skills for, and being entirely based on my computer meant it was 100% mobile and could be taken to hospital with me...
In fact it was so mobile that it followed me to Sydney for 5 weeks during my hospital stay and RPA media called me "a hospital bed entrepreneur". I have taken a break since October 2015 to focus on my health more.
So 7 years on since my HSC my marks mean nothing to me and hasn't dictated the path I have created for myself.
My marks didn't dictate my self worth or my lack of future accomplishments, it just made me determined to look for my own opportunities and make the most of what life gives me.
So to all those students whom like my brother are awaiting their final marks, I hope that this message helps give you perspective that there is life after year 12 and there are plenty of paths you can take... just be mindful of the opportunities that present themselves as they might not always be obvious and will need to be found... but they are out there!
Monday, November 16 2015
Hi and welcome to Chemo Diaries: My experience, which will be a monthly series of posts written like a diary about my experience as I undergo chemo. This is the first month post and is also for the month of October, 2015.
Thankfully there is heaps of information out there to help understand the type of cancer treatment you need and how it will effect you. I have found CanTeen have some great resources for helping me to understand what to expect from my cancer journey (even booklets on fertility after treatment). Other great places of information I have found are from the Cancer Council as well as the chemo education sessions I attended at my local cancer centre.
As I read in the Canteen booklet "Your guide to dealing with cancer ages 16-24", chemotherapy (chemo) is one of the more commonly used methods to treat cancer and it works by using drugs called cytotoxics to kill or slow the growth of cancer cells. As explained in the booklet (and from my own experience) chemo also kills your good cells too, making you feel very sick, fatigued, and also why you lose your hair (I am yet to experience hair loss). I also experienced really painful mouth ulcers recently (was so bad I couldn't eat, read more about that below).
Initially I was planned on having monthly doses of Caelyx but after a severe (almost-died-reaction) to it my oncologists decided on weekly doses of Methotrexate and Vinblastine combination to try and shrink these tumours, and as my oncologist explained "to help give me relief to enjoy each day".
I didn't go into chemo with the expectation that one day I will be cured and tumour free, I know that isn't my reality and I don't want to have unrealistic expectations. But I just want my tumours to shrink enough so I can FINALLY be pain free and enjoy what is left of my short life. I have so much I want to still do (read about my happy list here) and I hope to be well enough one day to travel.
My experience so far:
This concludes my first month of chemo experiences ranging from my portacath surgery to starting two different chemo regimes and as my husband said to me recently, "I know it is horrible right now, but the sad thing is you will get used to feeling like shit... just imagine when chemo is all over and you will look back and think 'It is good not to feel that crappy'. If anyone can do this, you can".
I love that he has so much faith in my strength, although I constantly wonder and feel like I am not strong enough to do this.... my husband is like my own personal cheerleader! I don't think I could have done this without his support...
One month down, just 11 more to go!
Tuesday, November 10 2015
One thing that I am learning more and more each day as I progress through my chemo regime is just how much fatigue I have and how little energy. I am realising the need and importance for energy conservation and working on improving this for myself and hoping to share a blog post to help others too, afterall being chronically sick is exhausting.
Another thing that is exhausting is dealing with the emotional side of living daily with a chronic and terminal illness.
I realised yesterday, that in order to help conserve my energy and to prevent just how exhausted I am feeling today, that I should try and keep my mental breakdowns and panic attacks to a mininum or at least save it for the times that need it most, or best yet to wait until you have all the facts and a confirmation from your primary care physicians before freaking out.
This is what happened yesterday and the lead up to it.
Monday 09.11.15 1PM AEST:
I left there trying to hold it together as I was hoping it was a fluid cavity as that could be fixed with a surgery and drain, but a new tumour I couldn't handle.
Monday 09.11.15 3PM:
I felt like the biggest dickhead ever and felt horrible for causing my family further heartache, but my heart was broken as I was told the wrong misinformed information and I hadn't yet seen my primary doctors to have it all confirmed.
To my followers that were supporting me yesterday during my freakout, I am so appreciative of your help and sorry for an undue stresses caused for worrying about me... It was not a cry for attention I legit thought I was on the brink of dying (so scary).
Much love to you all x
Tell me in the comments below, a time where you freaked out before knowing all the facts
Friday, October 16 2015
Earlier this month on the 2nd of October, I travelled the three hours south of Coffs Harbour to Port Macquarie where I had an operation to put in my portacath (port for short) for ease of use/access during chemo.
I just realised how funny that I had to go to Port to get a port (HAHA).
I spoke with a couple of friends who I met through Canteen that have gone through treatment and I asked them how they got their chemo. One said she first had it via a drip in her arm then got a port put in and loved it, and my other friend had a Hickman line.
I had met with the vascular surgeon and he showed me the port I was getting, which was this awesome metallic purple Power Port and given purple is my favourite colour I thought that it was the coolest thing ever, although my doctor thought I was weird given that you won't see it as it is under your skin... but knowing it is there and that it is purple is all that matters!
On the day of the surgery:
The night after surgery:
How is the port accessed?
It turned out the needle was defective, so they tried a new needle and it worked using the head turned far to the left and coughing tricks.
I have since had my port accessed multiple times during chemo, but also for fluids when I have presented to the Emergency Department with dehydration and fevers.
For more information on ports and if it is best suited to you or your chemo regime speak with your oncologist or your chemo nurse who can provide you with booklets and information.
Thursday, October 08 2015
October over the recent years has become known as the 'pink month' a month dedicated to the sole purpose of raising awareness of breast cancer but also to encourage women young and old to take charge of their health and become more breast aware.
It wasn't until a breast cancer scare earlier this year that I realised I needed to be more aware of my breasts (even though they're so in my face I can't not know they're there) but more be more aware of the changes and dangers going on inside.
In February I had my routine pet scan which my thyroid, breast and stomach lit up on the screen. I was told that there is something suspicious going on in my breast (left) and that I needed to have it checked out.
The following week I was admitted into hospital to undergo a bunch of routine investigations into my breast, thyroid and armpit. First I had the ultrasounds done on my thyroid and breast and stomach, which were followed by fine needle biopsies done of my thyroid, stomach and breast.
The breast biopsies were inconclusive, so I was scheduled for core needle biopsies, a mammogram, another biopsy this time putting in metal clips as identifying markers, another mammogram, then a CT scan a few days later.
Thankfully my breast wasn't cancerous and I am monitoring it every few months for changes, and while I am lucky that the changes going on in my breast were detected early, there are thousands of Australian women who aren't as lucky.
Did you know that in Australia 1 in 8 women will have breast cancer by the age of 85? Breast cancer is up there with bowel cancer as the leading cause of death among women (according to the ABS).
So I am wanting to raise awareness of breast cancer this month and also as a unique way of celebrating 200 likes on Facebook (thank you all for the support), I decided I would set a little challenge!
If you head over to my facebook page by clicking here, you will find an album of 10 FREE fb awareness covers for you to download, save and upload, these you can see below.
But there is a catch....
As I have created these awareness covers for you to use for FREE, I ask that you join me on a challenge I have set for this month...
#1. I ask that you become more breast aware this month by giving yourself a thorough check of your breast and armpits for any lumps of noticable changes. If you're eligible to visit the breast van for screening, look into making your appointment. You can also speak with your GP about having a breast aware check done.
So... will you join me this month towards being more breast aware?
Not sure what involves a breast mammogram, biopsy or breast ultrasound? Stay tuned for these posts coming soon!
Monday, October 05 2015
NB: This is a Sponsored Post
For most of the families or couples I know, live on a budget and it is often paycheck to paycheck. I know this is the case for my husband and I aswell.
It wasn't until my husband lost his job in 2012 (when his employer went into administration) and at the same time my hours had been reduced from 24 contracted hours weekly to 4 (unless I picked up extra shifts), so I had to learn quick smart a) how to budget, b) how to make the money we have from each pay count and c) how can we manage when there is more money going out than coming in.
Up until this point, I had never created a budget. But once I had, I saw how much EASIER it made managing the bills, and three years on I am still finding the success it has helped us to better manage our finances.
I wrote a list (table) of all the money that we had coming in, and all of the money that needs to go out on bills and also allowing for food. Because of how tight things were I didn't allow for things like shopping, movies, going out for dinner or date nights as these were 'luxury expenses'.
My expense list looked something like this: (NB: this is an example only)
Then there were the yearly bills like car registration and CTP Greenslip (so roughly $1000 annually) which I put $20 a week away into a seperate savings account so that we had the money there when we needed to register the car.
Up until the last month, I have been paying the same amount in bills as I had done 3 years ago. But it got me thinking that IF I reviewed my current bills what potential savings could I find?
Reviewing the mobile phone plans:
Reviewing your bank accounts:
Credit Cards and Balance transfers:
Reviewing our Home insurance:
Reviewing our Private Health Insurance:
So I was on a mission and enquired through Health Insurance comparison with the type of cover I have now and what I pay, and wanted to find out if there were comparative policies that:
Thank you Health Insurance Comparison for such a seamless process to help compare the right health insurances for myself, and for helping me to save money on future surgeries. Don't forget to compare, save and go in the draw to win a year's health insurance for free!
So while you might feel loyalty to a particular company, you also need to feel loyal to your wallets and if you can shop around and find a better deal on other areas of your financial spending (power/gas/phone/internet/loans) you can afford to go on that nice holiday, or better yet buy that pair of shoes you WANT but probably really don't need...
or better yet... do what I am doing and using all of the savings and money you would otherwise have spent on bills towards purchasing your first home!
Thank you for reading my 5 top things to review when you're living on a budget to help save yourself a lot of moolah!
Monday, October 05 2015
NB: This is a sponsored post
Sometimes in life, things happen that can be unexpected and often out of our control. But if we are prepared and have a contingency plan in place, it can help us to navigate through those difficult times with a bit more ease.
A contingency plan, is a plan that is designed to be implemented during a future event or circumstance. A contingency plan is also sometimes referred to as a back up plan or a risk management plan.
In my life, I have several of these risk management plans that I have shared with those that it most affects, and in each of these plans it explains in detail the steps that need to be taken.
Some contingency plans you might have (or need) in your life may include:
1. A will
2. A funeral plan
3. How you will pay your mortgage and bills if you were to lose your job?
4. What were to happen if you were no longer able to care for yourself and you needed to move into a residential facility or home?
5. How will you or your family survive if you became sick and unable to work or if you unexpectedly passed away?
Saturday, September 26 2015
NB: This post contains raw emotions
I am sitting here writing this approximately 3 days out of having my first round of chemo, and if I said I wasn't shitting myself, I would be lying and quite possibly with my pants alight.
You see, even though I have known for a while now (little over 3 weeks) that I would be needing chemo I thought that I was okay with it and had accepted it, and that I was ready, but the more meetings I have with my oncologists and chemo nurses and waiting for vascular surgeon to put in my portacath and the more involved this process gets, the more overwhelmed I get.
It all started earlier this month, I went to Sydney and met with my oncologist to review my beastly desmoid tumours, and it was concluded that it was time to try chemotherapy to shrink these tumours after all other options had been exhausted.
My oncologist told me I would be needing to have a drug called Caelyx, which is predominately used to treat breast cancers but has had some clinical trials where it has been effective in the fight against desmoid tumours.
So I left the Sydney appointment with the relief of knowing that I can have chemo back home and would need to organise a local oncologist, which I first met with on the 17th of September. In this meeting I was blown away with how thorough he was and he knew EVERYTHING about my history and I was really impressed with how much research he had done into my rare tumours and disease.
It turns out that the chemo that I NEED to save my life comes at a price. You see, the drug currently isn't on the PBS (Pharmaceutical Benefits Scheme) and is $6,000 AUD per dose of chemo, meaning I would be needing to come up with $36k, which I don't have.
So I called my Private Health Insurer, who told me that "we only cover chemotheraphy if done as an inpatient and if it is on the PBS, unfortunately we can't cover your chemo". I was so upset and started considering what my options were.
My oncologist presented three options to me, these were:
By this point it was a Thursday and I was told that I had until Monday to make my decision.
After talking at length with my husband and family, and writing a pro's and con's list I decided that we will go with option 3.
I got a phone call on Tuesday morning from my oncologist to say that the drug company has responded and approved 3 initial treatments and pre-approved a further 3 more, so 6 treatments in total!
I was so relieved I was crying and calling my husband and family to tell them the great news, I felt like I had won the lottery! Honestly!
Because of how rare my disease and tumours are, if this drug works for me then it might help other people with the same disease and options, and might provide some hope to those who feel all has been lost.
While I am so appreciative for the chemo being supplied, I am trying not to get my hopes up ..... if it doesn't work I really don't know how I could cope if I felt that all hope is lost, as it stands I am petrified of my future and what my life will entail for the next 12 months, and I am just praying that this works.
My husband and I have attended chemo education sessions, so we know what to expect and what is involved, just being only a few days out of starting chemo I am shitting myself, and finding myself feeling rather anxious, angry and scared.
... If I click my heals together 3 times and imagine a secluded beach in paradise, with Ryan Gosling serving me cocktails while topless, will I be transported there?
...CLICK.... ......CLICK....... ......CLICK......
Maybe it only works if you're wearing glittery red heels?
P.S I need your help! While my chemo is being generously supplied, I am struggling financially with all of the other medical costs (scans, medications, specialist consults) as well as getting to and from chemo and trying to manage life in general, things are a bit tight..
Sunday, August 30 2015
There is something about being chronically sick and told you're essentially "a ticking time bomb" that really helps to put things into perspective.
When I was first diagnosed with FAP in 2010 (I was 19), I was told that I wouldn't be at risk of bowel cancer until I was 30. It made me realise just how much I wanted to do and achieve while I still could.
Then in late 2012, I found out the polyps in my bowel were turning cancerous and that I only had a matter of months to act and have all of my bowel removed. You would think that this would cause more of an alarm and prompt me to want to do a lot more with my life, but as the bowel cancer risk was removed, I naively thought that my risk of cancer would be removed and I could get on with my life..
But boy was I wrong.... My cancer journey didn't end there. In fact, I was diagnosed with thyroid cancer earlier this year too which thankfully was successfully removed in April while it was still in the stage I phase, remained contained within my thyroid meaning it hadn't reached nearby neck tissues.
It wasn't until a year ago that I had this drive and motivation to want to do everything I have ever only imagined in day dreams, was re-ignited and has been a continual driving force (and distraction this past year). It made me realise that while I was content with my life and my accomplishments so far, that I didn't feel entirely happy, and I knew that there was more I wanted to do and see.
So I decided I would write a happy list, as opposed to a bucket list for one of two reasons:
What was the changing point for me, was when I was in hospital for pancreatitis when the doctors did a CT scan that revealed there was this new and rather large tumour and suspected it was a desmoid tumour. These types of tumours are really rare, but they can also be rather deadly and life threatening and these 'aggressive fibromatosis' can cause death.
To put it bluntly, when I was first diagnosed with FAP my doctors said that they "hope that you don't develop desmoid tumours... if it isn't the cancer from the FAP that kills you the desmoid tumours will".
So while I am only 24, I have come to terms with the fact that this condition will kill me, I just don't know when. Some doctors mentioned up to a year if the tumours continue to grow at the rate they currently are (thankfully last lost of treatment is keeping them at bay and no new growth) but others have said 5-6 years.
#2. Sense of accomplishment and fulfilment (purpose/direction)
#3. Is more empowering and motivating
#4. Offers inclusion of others
#5. Works as a distraction
Things on my happy list include (in no particular order):
I know some of these may sound over the top, and I admit they are but if you're going to dream you might as well dream big as well as being realistic... now if I could just find the next multimillion dollar idea, I will be well on my way to taking over the world (not quite literal).
So tell me, do you have a happy list and what is one thing you want to mark off your list? Feel free to comment below.
Monday, August 24 2015
I recently had a brain MRI as I was experiencing recurring symptoms I had when I was first diagnosed was arachnoid cysts on my brain in 2009, so as the symptoms had returned (the headaches, hearing loss and vision issues) I thought it was best to have a repeat MRI. The scan confirmed that the cysts that had been fenstrated (drained) back in 2009 had returned and were as big as they were then, and after consulting with my brain surgeon we agreed to monitor it for 6 months as this is the least of my conerns right now health wise.
So I had a reader message me after my scan, sharing that she too was going to have an MRI but she was feeling a bit concerned as she didn't know what to expect as she hadn't had one before, so she asked if I could share my experience and any tips to help her prepare.
What to expect when you need an MRI scan
What is an MRI machine?
How does the proceedure work?
How much does a scan cost?
Can anyone have an MRI?
How to prepare for an MRI in 10 steps:
ONE thing I like to do after my scan, is to go for a nice lunch or coffee with a friend. Not only does it help ease the anxiety I feel while waiting for my results to come back (can be a couple of days) it also is nice after having had starved all day prior to the scan.
These tips are based on my own experience of having multiple scans, and I am sharing to help you in the lead up to your own scan. The scan isn't invasive and no need to be scared of the scan. But it is perfectly normal to be anxious about the results, I know I usually am (especially when waiting to review my tumours).
As always, if you're needing to ask a question you can always connect with me through email or via facebook. Please remember I am no Doctor, so it is always best to consult with your physician as your first point of contact. I am only sharing my experiences on this topic.
You may also like the following topics:
p.s If you find my tips and blog helpful, please take a moment to vote for my blog in the Heritage savvy bloggers competition. With your help I (and if I win) I am starting a new support website (and app) to help other young people who live daily with a chronic illness. By taking a moment to vote not only will you be helping me to help others but I am confident that this website will change the lives of many (and if you're in Australia you could win $100). Please remember to confirm your vote via clicking the email they send (check your junk/spam too).
Friday, August 21 2015
NB: This post is an entry for the Heritage Bank Savvy Blogger Awards please click on the icon at the bottom of this post, to vote for Feeling Ostomistic and you could be in the running to win $100 and help me to win a share of $11k which I want to use towards my chemo (and medical costs) coming up. Would mean a lot if you could support me.
Without a doubt you might have heard about the extremely over-the-top wedding in Sydney recently, if you haven't you may have been living under a rock... in that case I will summarise it for you. This super rich couple had a wedding which they closed down entire streets in Sydney causing traffic chaos, and their wedding car fleet involved cars worth a collective of $50 million dollars, as well as hiring helicopters, sea planes... but to have a nice wedding do you NEED to spend millions?
I remember when I was planning my wedding years ago I wanted to have the big white wedding, and I was panicking at the cost it was all coming to (something like $10k+) and so was my husband well then fiance... and very quickly the wedding planning was becomming more about pleasing everyone else and catering to their needs rather than creating a day that was perfect for my husband and I.
Because of how much our wedding was going to cost we were planning it for 2 (almost 3) years away. But then something happened (rather fate as you might call it) and in the middle of June my then fiance (who struggles with large numbers of crowds and public performance) was rather overwhelmed with the wedding guest numbers and gave me an ultimatum....
He said either we get married in a month at the courthouse or we don't get married at all!
So I said that I will change our plans and organise a wedding in 4 weeks on a limited budget as long as we have a nice honeymoon and I get to have a nice 21st 2 years later and it be the wedding reception I had of hoped for....
Let's clear one thing up... there was no way I was getting married in the courthouse and I knew I had to plan a nice low-key wedding that was still memorable, that my husband would agree too and decided to make it as nice as I possibly could on a limited budget....
All in all, our wedding cost us just under $2500 and that was including everything!
Here are 10 ways I helped to save money on my wedding in under 4 weeks of planning, and I don't regret it at all!
#1 the dress = $220
#2 the tux = $250 (including jacket, pants, tie, vest & shirt)
#3 the wedding bands = $300 for both
#4 the celebrant and photographer = $1200
#5 writing my own wedding ceremony = Priceless
#6 2 tier wedding cake = $200
#7 bouquet of flowers = $30
#8 Flower girl dresses = $50 each
#9 Food at the reception (free for us)
#10 Venue hire (free)
More ways to save on your wedding..
While it may seem like my wedding was rushed (honestly had 4-5 weeks to plan it) I am so glad that I got married when I did rather than waiting until 2012 like we initially planned on getting married, as this meant my dad was able to walk me down the aisle and be there on my wedding day (not long after our wedding he was diagnosed with terminal Bowel Cancer, and passed away in March 2012).... I now have memories I will forever cherish from that day and conversations had (that still make me laugh). I don't regret have a cheaper low-key wedding, and after 5 years of wedded bliss this year, only proves that you don't need an expensive wedding to make a happy marriage.... also saving costs where possible meant we could go on a nice honeymoon to Hamilton Island for a week.
One last tip... A wise person told me before my wedding that I needed to savour every moment of the day and take it all in, as the day goes rather quickly especially when you're excited, and you don't want to miss out.... they also went on to say that if you make it back to your hotel suite and you are too tired (or drunk) to consumate your marriage, that it is okay and not to feel pressured that you HAVE to do it on that night... there is always the next morning and you have your whole marriage to worry about that (hehe).
Hope some of my tips shared can help you on your wedding planning, if you have a tip for others feel free to share it in the comments below.
Saturday, July 25 2015
I have been thinking a lot lately about my life and especially my health and what I have gone through and learnt. One thing that keeps popping into my mind is just how much being sick affects every aspect of my life!
When you think about it, being chronically sick interferes with your physical, mental, social, spiritual and financial health. I know my bank account has taken a massive hit since I had to stop working almost 3 years ago and with the never ending medical expenses (scans, blood tests, doctors fees, surgical fees, hospital excess fees). I also know people stop inviting me places because I often cancel last minute because I am stuck in bed, in pain and unable to drive (and have no one to drive for me).
I know a lot of people only associate health with just being physical, but I wanted to bring the attention to our health being holistic and incorporates the several key aspects of our life.
There are so many ways you can perform selfless acts, and it will make you feel better about yourself by bringing jo and happiness to others.
P.S if you have any suggestions or ways that you improve your health through small changes, please leave a comment and share ideas for others reading.
Friday, July 24 2015
Today marks 5 years since I walked down the aisle and said "I do" to my incredible husband.
We have gone through so much these past 5 years, and when they say marriage is for sickness and in health they weren't kidding!
We have often been told that our love story is incredible and a true testament to how much you're willing to do when someone you love is sick or ill.
I met Russell (my spunky hubby) when I was 18 and this crazy and bubbly first year nursing student at uni. I needed a new laptop after my laptop decided to go for a bit of a swim during the March '09 Coffs Harbour floods... so I desperately needed a laptop to keep up with uni work.
I headed off to my local Wow sight and sound electronics superstore (which has since closed) and was on a mission to find a new laptop. I was greeted by this rather adorable and spunky computer salesman (and I could tell he was a bit nerdy too) so I pulled out all my charm and wit and tried to pretend to understand whatever computer mumbo jumbo he was going on about... it was so hard to focus when his eyes were so dreamy!
I was a poor uni student who didn't have contents insurance or much savings, so I needed to apply for finance for a laptop.
I spent the next couple of hours chatting with this salesman while we were doing the application, and he claims I was hitting on him (I say otherwise) but when I was rejected for finance I was about to head home and decided I would ask for his number but just like GE and flexirent, he too rejected me.
A couple of months passed and I had received a scholarship from uni and had some savings in place to attempt to buy the laptop again. So I tried to wait until a couple of months had passed before I returned to the store in the hopes he wouldn't remember me.
I had even gone to the troubles of dying my hair a red/purple colour and cutting it really short.
So the day came in July (3 months later) and I wondered into the computer department when I noticed the hot salesman. I tried to avoid his attention (I still felt the shame) and pretended to be busy looking at computers when he walked up and approached me. He smiled and said "It's Talya isn't it" and I felt my face turning red like a beetroot and in my head I was cursing with a few "f#$%, f$#%, f$#%"'s and really wished he hadn't of remembered me.
But I felt my face returning to normal and told him I was ready to buy that $2000 laptop I wanted and would need a new printer, MS office word and some extended warranty (I was every computer salesman's dream customer.. one that knew what they wanted). He started to get it all organised when he said to me "I am sorry for not getting your number that day, I have regretted it everyday since and just hoped I would see you again and not be shy to get your number".
So we got talking and he asked what I was up to since I saw him last, and I told him how I had been sick and waiting to have brain surgery in a month's time.
His response was "What superpower are your getting?" which was pretty typical for a nerd, and made me smile. I left with his number and a new computer and sat by my phone waiting for 5.30pm to come so I could call him.
We chatted for ages on the phone and organised to have a date the following sunday and chatted every night leading up to our date. It was like we had known each other forever, and I really felt that I could be myself and could trust him. There was that instant connection.
My friends gave me a bit of a hard time over the age gap. I was 18 and he was 29, but never has it felt like there was this gap between our ages. Sometimes I think he is a kid with the way he acts and carries on... but they do say it takes a long time for males to mature LOL.
So we went on our first date and we started dating and he really helped me come to terms with my upcoming brain surgery, which I was so scared about (and it was also going to be filmed for the RPA TV show).
Russ was there for me through my brain surgeries even though he barely knew me, and my dad really admired that in him and the way he took care of me when I was sick. So I was almost in the second month out of three for my hospital stay (I devleoped golden staph/MRSA in fection after one of my surgeries so was 2 month treatment to rid me of the infection) when he proposed.
We got married the following July, and everyone thought I was being married because I was pregnant (which I wasn't and yet to have a child) or that it wouldn't last because I am too young or that I was rushing into it.... what many failed to grasp was when you are faced with life or death you soon realise how crucial it is to make the most of everyday you are alive... I was doing just that, living life at its fullest and not missing out on any opportunities.
Our wedding was a beautiful, intimate and relaxing day. Aside from the usual family drama that comes with a wedding, the day was better than expected. The weather held off, and we got married on a headland and saw whales breaching in the background, it was truly magical!
Best of all the wedding (including our outfits) was under $2500! I wanted to save as much on the wedding so we could have the honeymoon we dreamed of!
Not long after our wedding I started a traineeship at a bank and learnt of my dad's terminal bowel cancer and that it was a rare inherited type known as FAP. I started screening and testing which was confirmed I too inherited this disease and started meeting with an array of doctors and specialists who wanted me to fastrack having a family (preferably via IVF to diagnose any embryo's affected with the gene).
It was hard being a newlywed and finding out that your dreams of having a family and that you're at a 80% risk of bowel cancer and prone to other tumours and cancers and will require 6 monthly surveilence.
It was a lot for us to come to terms with, but we got through it all and Russ was there for me.
Dad lost his battle in March 2012, 3 days after my 21st birthday and Russ supported me through my grief.
Wow went into administration and Russ was made redundant in April, and he struggled to find work. I was able to pick up extra shifts but things were so difficult. I was finding my health especially my bowels deteriorating and I was in constant pain, but I had to keep working or we would have lost everything. I lived off of our credit cards to help make ends meat, as I was now needing to work enough to cover 2 incomes.
In September Russ thankfully got offered a job with a well established company coming to Coffs and it meant I could reduce my hours so I could finally go to Doctors appointments and catch up on colonoscopies.
After a few months on the waiting list to see a gynocologist, he booked me in for investigative surgery the following week as he discovered I had a large mass on one of my ovaries.
So I had a colonoscopy on Oct 8th and a laporoscopy, cystoscopy and hysteroscopy done on the 10th and it was discovered I had severe stage IV endometriosis with my surgeon saying "it was one of the worst cases he has seen in his career and in someone who was 21". I had a 15cm round enometrioma removed off of my left ovary along with the lining of the ovary, a couple of 7cm masses removed and a hundred 1 and 2cm sites removed as well.
Because of the extent of the damage I was placed in a medically induced menopause for 6 months and it was horrible. I was so sick and it took me a few months to recover from the surgery (sex was a no go, just hurt too much and still does) and I made the decision to stop working so I could recover and focus on my health. Russ was great about it and was so supportive and did everything to help me get better.
The week I finished up working (was Nov 24th) I found out the results from my colonoscopy, which showed the polyps in my bowel and rectum were in the early stages of becoming cancerous and I had an estimated 6 months to have my bowel removed before the cancer fully turned and spread. I was told I would need a permanent ileostomy.
The start of 2013 involved a lot of appointments with stoma therapy nurses and surgeons to ensure I understood what was going to happen. I was really struggling to come to terms with the idea of having an ileostomy and knowing it will be a lifelong decision was rather daunting.
Heck, all I wanted to do was be a normal 21 year old and I felt that my health was taking a lot of normalcy away from me.
So the surgery was scheduled for April, which was cancelled just as they were about to put me under and rescheduled a month later at the main hospital (for safety reasons) so it meant another month of trying to process it.
Russ was incredible through all this, he came to all my appointments and even asked to be shown what to do to help me do a bag change and wanted to be involved. He was there when I had my surgery and helped me to get out of bed and walk around (which was so painful) but he also would come and visit me every day for the month I was in hospital even after he had been working all day and would take home clothes to wash and bring me new clothes the following day, he would even help me to shower.
And no matter what has happened, he has never seen me as gross or disgusting because I have a stoma and continues to be attacted to me and love me unconditionally.
In 2013, I also developed acute recurrent pancreatitis which meant a lot more visits in hospital
This year wasn't as intense with as many surgeries but still had a lot of pancreatitis visits to hospital.
It was also discovered in July that year that there was a large abdominal mass, and was sent to Sydney for investigations and ordered to have PET scans, which after reviewing the October PET scan the doctors wanted me to repeat it in Feb 2015, so it was months of waiting to see what these tumours were.
In Feb' I had the repeat PET scan which showed there was activity on my thyroid, breast, multiple tumours in my abdomen as well as the bigger tumour now completly blocking my left kidney. This meant being admitted into hospital for further tests which went over a period of 5 weeks. I was in hospital some 800kms away from home, and it was really hard for Russ being home working and he wasn't coping trying to come to terms with everything. But in true stubborn male form, he wouldn't talk about it all either.
He helped me through my thyroid surgery and I wasn't very well and he helped me to shower and take care of me. When he arrived the morning after my surgery I was still sedated with a ventillator attached and tubes hooked up everywhere, he didn't cope well seeing me how I was and when I saw how I looked even I was worried.
I just found out I will be needing brain surgery again, and still waiting to see if my desmoid tumours will shrink or if I will need chemo, but it has made all the difference knowing that no matter what happens my husband will be there to help me.
He works so hard to help support us while I haven't been able to return to the workforce and he is great at putting up with my mood swings, some days I am coping but other days I am a mess, and he doesn't judge me. He always knows the right things to say!
But in the 5 years I have been married and been chronically sick, I have learnt 5 very important things:
A huge thank you to my husband for helping me through the last 5 years, without you I don't believe I would have made it. You're my hero x
Tuesday, June 30 2015
NB: THIS IS A SPONSORED GUEST POST
In life, we all have our regrets and in hindsight wished we could go back in time and with the knowledge that we know now and not repeat the same mistakes again. I have many of these moments where I wished I did things differently or better and one of them was going to see a financial planner when I was 18 or 19 and something that was in place before I was married.
You see, not long after my wedding my dad broke the news that he was terminal with bowel cancer and that his type was caused by a rare disease called Familial Adenamatous Polyposis (FAP), which was caused from a mutation of the APC gene (a tumour supressor gene) and that it was also genetic. I underwent tests and was confirmed that I too had this disease, and as I was a newlywed I decided to apply for life insurance and was rejected on the grounds of the condition and as it is something that I have seen numerous insurers about and none can find an insurer willing to insure me as I am at high risk of cancer and more than likely will die earlier than healthy/normal peers my age.
Then I got sick in 2012 with severe endometriosis and required surgery to remove a 15cm round mass off of my ovary along with the lining of said ovary and removing/excising hundreds of sites of endometriosis. My surgeon said it was one of the most severe cases he had seen and especially in someone who was only 21. Because of the extent of the damage I was placed in a medically induced menopause which was truly horible. It made me so sick I was unable to work as I had these insufferable migrains and the nausea and hot flashes were cruel.
The week I stopped working was the week I was told that my bowel was turning cancerous and needed to have my bowel removed. So either way I would have been forced to stop working as I was told I needed 12 months off of work to recover, and then I was diagnosed with pancreatitis in 2013 which meant every other week I was in hospital for 7-10 days undergoing treatment for that, and then the desmoid tumours were diagnosed along with the thyroid cancer this year has meant that I haven't been able to return to the workforce as I am just not well enough to be considered reliable for work.
I can tell you the last 3 years have been hard financially, emotionally and physically and one thing I wished I had in place was life insurance to help me financially while I can't work, and money has been so tight and often stressful. I am just thankful my husband can work so hard to provide for us and support me while I am unable to work.
I really wished I had some sort of security in place, and it is something I hope through my mistake you will consider.
So I asked our friends over at Life Insurance Comparison to help explain how life insurance can be used while you're alive and become ill or disabled, and Sally has written a great guest post for us on this topic.
How Life Insurance Can Help If You Become Ill or Disabled
Wondering how you'll pay the bills if the main earner in the household gets ill, has an accident or dies can be a hugely stressful experience that can be avoided through life insurance. At Life Insurance Comparison, we're here to help you to navigate the often confusing world of life insurance so that you can get the right protection for your needs. We'll work with you to buy the right amount of cover and the most appropriate type of product to support your family if the worst happens.
When you first think about life insurance, what comes to mind? If your initial thought was to with death, you may be unaware of the full benefits of life insurance. Many people mistakenly believe that life insurance only comes into its own if the policyholder dies but it can actually be an invaluable form of financial support if you become seriously ill or disabled and cannot work as a result. None of us want to think about the idea that we might be unlucky enough to experience this but it pays to be prepared.
In this post, we look at the ways in which life insurance can offer peace of mind if illness or disability occurs during the lifetime of the policy.
Life Insurance and Illness
If you become ill and are unable to work because of this, the subsequent stress could make your situation worse. Even if your lack of income is only a short term proposition, you could be under severe pressure to make ends meet if you don’t have savings to fall back on to tide you over. Fortunately, life insurance can provide an income to ease financial stress.
The exact nature of this income depends on the type of life insurance product that you buy. Income Protection Insurance will provide regular monthly payments that can be anything up to 75 per cent of your usual salary, which can be used for day-to-day living expenses while you are not working due to illness or an accident, while Trauma Insurance offers a lump sum payment if you are diagnosed with one of the medical conditions that are covered by the policy.
You’ll therefore need to think carefully about the kind of life insurance protection that you would want to have in place if you were to become seriously ill or disabled. Would you prefer to have a regular income stream coming in each month that can be used regardless of the situation? Or would you rather receive a lump sum payment if you diagnosed with a serious and traumatic condition such as cancer, a heart attack or stroke?
Life Insurance and Disability
Life insurance can also help if you become disabled and cannot work. In particular, Total and Permanent Disability (TPD) cover provides a lump sum payment if you become permanently disabled and this stops you being able to work. This type of life insurance cover is usually needed if a professional has confirmed that you will never be able to work again due to a new (and not pre-existing) disability.
How Much Life Insurance to Buy?
Underinsurance is a huge problem in Australia in general, and this is definitely true for life insurance. This is because many of the Australians who do have life insurance don’t have enough cover to provide full peace of mind if the worst were to happen. You may already have some degree of life insurance through your superannuation fund but this is usually extremely basic and does not offer much protection at all. To be safe, you’ll need to have additional life insurance cover in place to fully meet your needs so that you are not caught out financially if you need to rely on the income.
With Income Protection Insurance, you’ll want to safeguard as much of your salary as you can afford (up to 75 per cent of it) so that you can still experience a good standard of living while you cannot work.
With Trauma or TPD cover, you’ll need to make sure that your lump sum payment is substantial enough to cover everything that you would want. You’ll therefore need to think about how much you would realistically need for regular outgoings and also factor in medical and rehabilitation expenses (if you don’t have health insurance that would cover some or all of these latter costs). Trauma insurance is generally the most expensive type of life insurance but it can turn out to be the most cost effective if you need to call on it.
Ideally, you should look to buy as much life insurance as you can realistically afford so that you are less likely to be underinsured. If you want the lump sum payment to be able to act as a long term source of income, this will obviously be more expensive to buy but would be very useful if you are unable work for over a year due to serious illness, an accident or temporary disability.
Thank you Sally and Life Insurance Comparison for explaining how beneficial it can be to have Life Insurance while you're alive! If you found this post helpful (or any on my blog) please feel free to leave a comment below.
Saturday, June 13 2015
NB: This is a sponsored post
Lately, I have been thinking so much about how differently life as an adult actually is when compared to what I thought it would be like as a teenager. Oh how naive was my younger self.
There are things I never thought were important or necessary until the time came and I realised it was too late.
Here are my 5 things I believe that every adult should have in place:
#1 Life Insurance Policy
I didn't realise that having a life insurance policy can actually be of help if you get sick and need time off work, or if you suffer an illness or injury and become disabled or unable to work again, the life insurance policy can help you out.
What I wished was that someone had of said to me when I turned 18 to get insurance, as it wasn't until I got sick that I went to take out a policy and told that I am now 'unsurable'. There were so many times that I wished I had that extra financial assistance when I was too sick to work.
I did however make sure that once I was married that my husband has the necessary cover in the event that he becomes sick. We met with our financial planner at our bank and set up the policy to be paid out of his super fund. It is convenient for us paying it this way, as I am often in hospital sick it is one less bill to remember to pay. We were able to nominate the total insured amount we wanted as well.
#2 A will
A will also has instructions over who is responsible for your digital assets such as a blog, facebook etc and what you're wanting done with these digital assets when you die. My husband understands my clear instructions of what I want to be done with my blog etc when I die, he knows that I want to keep my blog open as a resource for all the young people in the future who have FAP or will be needing a stoma and are looking for support when they feel alone.
My husband and I were struggling to find a time that suited both of us to visit a lawyer, so we were so happy when we came across Nest Legal an online legal firm, not only did it mean that we could organise our wills from the comfort of our own home, but also meant working around a schedule that suited us and not around when both my husband and I could make it. It was a very convenient solution, and so lovely to deal with.
#3 Enduring Power of Attorney
An enduring power of attorney is a document that is as important as your will, and is a document that nominates someone to act on your behalf for financial, legal and health matters if you become incapacitated or unable to make decisions for yourself.
It is important that you discuss with your loved ones whom you wish to appoint and what roles you expect of them. It is important to choose someone there won't be conflicts of interest with or someone who can remain impartial to decisions and can act with your best interests in mind.
#4 A Regular GP
As my medical history was becoming more and more indepth with each visit, I made the decision to 'shop around' for the right GP and I happened to have found him 4 years ago and never looked back. It is really helpful now having 1 GP who receives all the correspondence from doctors, scans and blood tests rather than having a few doctors and not remembering which GP you saw for what issue.
Trust me, having a regular GP will make life easier!
#5 Health insurance or Ambulance cover
You never know when you or your family might need an ambulance and there is nothing more stressful when you're dealing with an emergency than worrying about how you'll be paying for it, instead focusing your energy where it is needed.
If it is health Insurance cover you need, speak to the guys over at Health Insurance Comparison to find out what policies there are to match your needs or lifestyle.
I have no idea why I was in such a hurry to become an Adult, some days being a kid sounds so much easier.
So while these might be my list of 5 things I believe every adult should have in place, I know that you might have other suggestions. Feel free to leave your suggestions in the comments below, it might be of value to another reader who hadn't thought of it.
DISCLAIMER: While this post was written by myself about my experiences and the 5 things I believe every adult should have in place, all views expressed in this article are mine. This post was written for Health Insurance Comparison.
Tuesday, April 07 2015
When I was diagnosed with cancer earlier this year I did so much reading and research and read every pamplet I could find related to my cancer.
But there was one thing that I learnt about cancer that wasn't in any of the brochures or books that I read... there wasn't anything that would tell me how I should expect to cope or the stages of emotions I would experience.
Just like the 5 stages of grief, I found there were 5 stages to my cancer diagnosis and journey.
#1 shock and denial
I remember the feeling of disbelief, that while I knew it was always a possibility it was only a 2% chance. I didn't think it would happen, especially at my age.
I remember hoping that it was a mistake and that it was made in error.
It wasn't until I called my family and husband back home to tell them the news that it really sunk it. It hit me all of a sudden and I just couldn't stop crying
#2 pain and guilt
All I wanted to do was take away their pain and tell them that everything is okay.
I didn't want to tell them just how upset I am/was or that I wasn't coping as I felt if I was being strong enough for everyone to see then they won't be upset, I felt if I were to show just how much I am hurting that they wouldn't be able to cope.
It was like an endless circle.
#3 anger and bargaining
I know there was bargaining (and still often happens) that I kind of put it out to the universe that if I were to win lotto I would donate to the charities that have helped me and then as good karma it should be enough that I have no more issues from this disease FAP that has caused havoc in my life and mysteriously get cured from all ailments... Then and only then, can I become a normal 24 year old... whatever normal is!
#4 depression, reflection and lonliness
You will have so much time reflecting on your life that it makes you so much more depressed. I turned the big 24 in March, and I always knew growing up that by the time I turned 24 I would have been married, had started a family, owned my own house, finished uni and had a great career... I turned 24 and all that I have out of my dreams of accomplishments is that I got married. I look back on the last 6 years since I left school and feel like an absolute failure. All I seemed to have mastered is being sick and being in hospital! Brain surgeries in 2009, endometriosis surgery 2012, total collectomy 2013, pancreatitis 2013-present and thyroidectomy 2015.
And the next person to tell me 'go for a walk' or 'you really shouldn't complain your life isn't that bad' might just get their head bitten off. Depression (having had it since I was a child formally diagnosed when I was 12) isn't something that you can just walk off!
One thing I can certainly reflect on is how much I have lost because of FAP and cancer.
#5 acceptance and hope
I know it sounds cynical, but I have to believe and accept that me going through all this serves a purpose....
The word hope is a noun, and it can be a pretty powerful word at times and gives off a strong desire to want things to happen as you want or expect them to. I learnt this week how upsetting it is when hope is taken away from you. I have been on a 3 month trial of temoxifen and sulindac to shrink my desmoid tumours invading my abdomen. I had my CT scan this week and realised the tumours haven't shrunk and are growing. I go back to Sydney next week and have it reassessed and hope (there's that word again) that we can find a treatment that works... I am mostly bummed because I was hoping for a miracle and that the tumours have gone away and that I could be experiencing a pain free day... I was so hopeful that this was almost the end of these tumours.
Don't forget that there is help out there...
RedKite is another amazing organisation that supports young people 12-24 with cancer and also offers financial assistance as well as counselling. To access counselling call 1800 REDKITE (1800 733 548).
Cancer Council also has a program called Cancer Connect where you can connect with someone who has experienced cancer and knows how you feel. You can call 13 11 20 to find out the different support available to you.
HeadSpace is a not for profit organisation that helps 12-24 year olds with mental health issues. They have an online help available as well as help at local centres.
Beyond Blue 1300 224 636 is the number to call to chat with someone or they have web/online chat available too. Beyond Blue are a great resource to helping you understand your depression or anxiety and has a lot of information on their websites.
Kids Help Line 1800 551 800
Lifeline 13 11 14
Tuesday, March 03 2015
Back on the 3rd of Feb, I had to head back down to Sydney for my next PET Scan (click here to read what to expect when you need a PET scan) and the scan showed that there was activity on my thyroid and in my breast/armpit (which is new) but it also showed there were new tumours just under my scar from my ileostomy, and some under my ileostomy as well as the larger mass was now compressing my Kidney.
My doctor saw me after my scan, had said he wanted me back in Sydney on the 9th to be admitted into hospital so they could undergo further tests and start treatment for whatever these tumours were (they were still speculating about what it could be). At this consult I was only told about the breast and the tumour blocking my kidney (I didn't know of the additional stomach tumours or activity in my thyroid).
So first came a team of Endocrinologists, who wanted to chat about my history and asked me about my thyroid and if I had noticed any changes. I mentioned to them that my neck at times feels a bit bumpy and sometimes it feels like I have trouble swallowing or that I can feel like something is pressing on my neck and I am choking.
I told them about my entire medical history and weight issues, and how I have seen some endocrinologists before who seemed more interested in taking my money then actually helping figure out what was wrong.
They told me that my thyroid showed up on my PET scan as an area of interest and that I would be going the following day for an ultrasound of my neck.
I had the ultrasound, and a couple more doctors came in and then they left and were chatting, and came back and told me that they can see a lot of nodules on my thyroid and that there are some enlarged lymph nodes. A doctor confirmed later that day that I have a multi nodular goitre.
They told me "it is probably nothing to worry about but we will do a biopsy to be safe".
The biopsy was the following day and was done in a special room where there was a CT, ultrasound machines as well as a lot of surgical gear. I had a FNA (fine needle aspiration biopsy).
I had to lay flat on the bed with my head tilted back so my entire neck was exposed. The Doctors then re-did an ultrasound to confirm that the lymph nodes and nodules they saw were the ones they needed to biopsy (there was 2 of main concern). They confirmed the lymph nodes were the correct ones and the biopsy proceedure started.
As they were biopsying each side I had to turn my head as far as I could.
They then applied the local anesthetic, which hurt a lot. It is a pretty sensitive and uncomfortable area.
Then they did the biopsies. They had to do several attempts at each of the two lymph nodes to make sure they had the best samples. There was also a cytologist there to confirm the quality of the samples under microscope.
Although they had numbed the area it still hurt and also was uncomfortable. Everytime they penetrated the lymph node and jiggled the needle about it was sending a shooting pain up my jaw, into my ear and into my head. It was like it was hitting a nerve. It was horrible. But as soon as they removed the needle, this went away.
After the Biopsy
After the biopsy was done, I was brought back up to my room and as my neck was so sore I asked for some ice packs to place on my neck. During the night my neck got a bit swollen and irritated, so I had some panadol and applied more ice.
My neck only hurt for a day or two afterwards and I just applied ice the entire time. The ice helped with inflammation and also to relieve the area of pain.
I felt as though I had been attacked by a lymph node sucking vampire!
The Results and What's Next
My results were back the following day (I just had gotten back from my breast biopsy) and was told that it was positive for Papillary Thyroid Cancer related to my FAP and I was just in so much shock I couldn't stop crying.
The doctor sat with me as I called my husband to tell him the news, and she told me that this is the best cancer to have out of all of them it is the most curable when caught early, and she started telling me about the surgery and what it will involve.
I know I shouldn't have been so shocked as when I was diagnosed back in 2010 with FAP I was told then that in a timeline of cancers it would go colorectal and then some people get thyroid, pancreatic and so on. I just always hoped that I was one of the luckier ones with FAP that just needed the total colectomy and that was it.
I am due to have my entire thyroid removed on the 30th of April, then I come back for the radiation weekend about 4-6 weeks after to kill any remaining thyroid tissue.
Stay tuned for what to expect with a breast biopsy and also a stomach biopsy.
I have been given some really useful guides by my doctors about the upcoming surgery and thyroid cancer which most can be found online from the cancer council's website, Another resource I read was or a really informative guide I found useful from Genzyme Australiasia.