Shrinking the Silence

Sharing a voice on living with rare disease

Tuesday — October 7, 2021


Tuesdays have been for treatment for longer than I can remember

Since late 2016, Tuesday has been my treatment day… and since January 2017 every Tuesday I have been getting the same drug pumped into me…

But as of this week, Tuesday will be the same as any other day, not treatment day. I am in the limbo of stopping my current treatment and waiting to start a new drug, which will likely be a daily tablet.

I haven’t been in this place for many years, and it’s a scary place because your mind is just thinking about what side effects the new treatment will have on you, what impacts will it have on my life and most importantly… will all of the side effects be worth it and see my tumour shrink (can only hope!)

So you can imagine that I’m both excited and nervous to have my Tuesdays back.

More to come on this new era of dealing with my desmoid tumour. I see my oncologist again in 2 weeks to finalise what my plan is to shrink this bugger of a tumour!

I struggle with my mental health and that’s ok — November 27, 2020

I struggle with my mental health and that’s ok

I’ve been meaning to write about my experience with mental health for a while but it is a really hard one to tackle. I hit a bit of a milestone last week though, which has got me reflecting of my progress over the last 5 years. 

I had a session with my psychologist last week and we realised that I have been doing pretty well for a while now, so I left without making another appointment, knowing that I can come back if and when I need to. It’s a great feeling but also one that comes with a bit of fear because therapy has been like a security blanket for me and also got me through some pretty tough times – my diagnosis of FAP, recovery from major surgery, breakups, toxic work culture of an old job (not my current job!). But the good news is that I have learnt some very helpful strategies to cope if I need them again down the track and I do continue to be on medication which keeps my symptoms of obsessive thoughts out of sight! 

It took me a while to seek help, and the reality is the trigger was my diagnosis of FAP but I was struggling with my mental health prior to this but was just doing pretty well and masking it and going on with life because it wasn’t something that was really spoken about. Anyway, back to the timeline… so when I got diagnosed I saw my GP who gave me a referral to psychologist and was very diligent in following up on any other support I may need. I appreciated the thought but was there thinking… I’m fine? I’m 25 and I just need to push on and focus on the surgery ahead of me, aint nobody got time to talk about my feelings!

As surgery loomed closer and pretty difficult conversations  started being discussed I realised that I wasn’t coping so I made my first appointment and here I am 5 years later not looking back. I was very much a closed book for the first year or so, thankful that they persevered and got me to open up because I don’t know what state I would be in now if I hadn’t gotten on top of what I was feeling. In the year after my diagnosis and leading up to surgery I was a mess of dark thoughts because I was in a limbo where I needed to put my 100% trust into specialists I had just met – a common thought was what if they’ve got the staging wrong and cancer is already growing in me, am I going to die young? I needn’t have worried because my surgeon is a champ and very skilled so I am A OK! 

So I did open up a little through these sessions – but I still remember the realising how much I was still holding in when I was finally allowed home after my surgery. I had been cared for around the clock at hospital and when I came home it was such a relief but also terrifying because I was faced with a long recovery ahead of me and the knowledge that monitoring and regular surgeries/procedures would be part of my life forever. I broke down, uncontrollable tears! For those who have met me you would know that I rarely cry so this was very unusual but quite cathartic. 

As I got through my recovery from surgery, my psychologist encouraged me to think about how I could find an outlet for what I was going through, and soon after I started this blog, Shrinking the silence, which has helped me so much. I’ve always been better at writing down how I’m feeling or going through, so it was the perfect spot. I had been journalling before but there was something about putting it on a public page that made it more real and it also had the other purpose of potentially reaching others who were going through a similar diagnosis and struggling to find helpful information and personal experiences (trust me… when you have rare disease or cancer the internet can be terrifying and quite negative). 

So at this stage, life was pretty dandy – I was back to somewhat normal life, back at work and working out how to stop living in my illness. Then came along my good friend, desmoid the aggressive tumour. Out of nowhere I now saw an oncologist and had to start chemo. Cancer is scary, terrifying, but everyone who works in the field of oncology are amazing people. My oncologist was very intuitive and could sense that I was coping by not focussing on what was happening to me and just pushing on (very true). He would ask me each appointment for 3 months or so how I was coping and I would answer back, yep I’m fine, doing well… lots of support around me, talking to a psychologist about it etc etc. 

He left the choice to me which I appreciated, but let me know that I might benefit from seeing a psychiatrist and exploring if medication could help me in this really tough period. What I hadn’t mentioned to him or anyone was that I was having some pretty terrifying thoughts on a regular basis that were really upsetting me. A month or so later I asked him for a referral and I’m so glad I did. I’ve been on medication for a few years now which help with my obsessive thoughts and enable me to go about life with limited set backs. 

If you’d asked me 6 years ago before any of this medical stuff happened to me if I would consider seeing a psychologist or psychiatrist, let alone be on medication for it, I would have laughed at the idea. That in itself is a scary thought because I desperately needed help but didn’t want to believe it myself. 

Aside from the obvious of controlling my symptoms – therapy has opened up a whole new world for me of valuing myself, my boundaries and my relationships and I couldn’t speak more highly of seeking help for your mental health.

The wake up call to listen to my body — October 12, 2019

The wake up call to listen to my body

This is a pretty insignificant public plantar pot, but I happened to have a run in with it a few years ago. And by run in, I mean I was walking up to the shops and the world started spinning and next minute I was lying in the plantar, woken up by a passer by-er.

I walked past it today and it made me think how much better I have become in noticing my symptoms and acting before it reaches the point of no return.

In the lead up to this incident, the signs were there. I had started a new treatment a few months ago that my body was still adjusting to. It was less full on than chemo so I let my guard down on keeping up with anti nausea drugs but the reality was I could hardly eat because I was so nauseous and I was definitely experiencing diarrhoea. Yet it became my new normal so I didn’t even think to discuss the symptoms with the nurses. I just kept going and going until my body couldn’t go anymore.

I fainted and was very lucky that I fell into soil and not solid concrete as I did hit the back of my head. I spent the next few days in hospital rehydrating myself.

Dehydration is always going to be a risk for me, it comes hand in hand with having no large bowel to hold and absorb water and nutrients like I did before. Since this day I’ve had more times where I’ve become dehydrated and I have picked up on things like how the taste and satisfaction of water changes and how I feel disorientated and struggle to speak coherently. I’ve also learnt that with dehydration or UTIs that I regularly get, things can go from pretty mild to extreme in a very short time. When I first got sick I didn’t want to be the type of patient who was always asking for help so only really mentioned problems when they were at that point of no return. Reality is, doctors and nurses want to help but can’t when they don’t know the full picture, so I’ve gotten better at reaching out as well.

It’s not easy to have to slow down or check yourself into hospital when chronic things pop up…but I know now from experience that when I do act early, I’m better off in the long run.

Any body, whether it’s chronically ill or perfectly healthy, has limits – don’t forget to notice your normal and what you can do when you’re physically struggling.

So many things to be happy about — August 30, 2018

So many things to be happy about

After two years of active treatment for my aggressive desmoid tumour, I finally feel like things are back on track and that there’s more going for me than just hope, I have consistent scan results that show shrinkage each time.  The tumour hasn’t grown since the end of 2016 and things are looking promising that it will stay that way for the near future at least.

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Acknowledging my medical trauma, three years on — May 2, 2018

Acknowledging my medical trauma, three years on

In September this year it will have been three years since I lost my bowel, it’s taken me this long to fully appreciate how much this has affected me. The bowel is a funny organ to lose. You often hear of throwing parties before amputations or things like that. When it comes to your bowel, how do you send it off in style? It’s not exactly an organ we talk about openly.

My fight or flight response at the time definitely was to fight. I pushed through and didn’t let my emotions get in the way of moving past each hurdle and making a full recovery, although very importantly I did start seeing a psychologist because I did have a lot of fears and anxiety around the diagnosis. I had no idea how to process the news that I needed to have major surgery to remove my bowel. I barely knew the importance of my bowel (I definitely do now that I no longer have it!).
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When you’re invisible — April 21, 2018

When you’re invisible

I don’t look sick. This brings about lots of assumptions about me.

Without knowing me well and just by looking at me, you wouldn’t know that I have short hair because it fell out from chemo. And that because of that chemo and the ongoing treatment I have now I often feel tired and out of energy.

You wouldn’t know that I have a tumour the size of a large mango in my abdomen.

You wouldn’t know that I’m missing my large bowel that means I don’t absorb all the nutrients and fluid that would be useful to have.

You wouldn’t know that I really need that seat on the train, but I’ll make do with leaning on the stair walls.

You wouldn’t know all of this because in order to not be defined by my illness I try really hard to maintain normality and keep going and pushing myself.

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When your body starts catching up with you — April 11, 2018

When your body starts catching up with you

I’ve recently realised that I’m at a stage in my journey with rare disease that my body is catching up with me, and a lot of my problems are chronic and aftermaths of necessary surgeries and treatments to save my life. It’s taken me a few years of being ill to truly appreciate that a large part of my life is dealing with chronic illness, that will never go away, and will leave me with periods of feeling fatigued and dehydrated.

I have diseases that are very rare and that involve monitoring and removing cancer before it becomes a problem. This means that one of my hats is cancer. Yet I’ve never felt I am the true story and example of bowel cancer, because I was incredibly lucky to find out about my FAP just in time, when the polyps were starting to change to cancer, and I had my bowel removed. I am still at risk for cancer, with pre-cancerous polyps all over my duodenum, stomach and ampulla, but these are monitored regularly and removed when they start growing.

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The reality of being brave — March 7, 2018

The reality of being brave

I recently saw a fundraising page for someone shaving their hair for charity. What stood out to me was the campaign logo which said “be brave & shave”. Don’t get me wrong, I’m all for campaigns like this that get people involved and raise money for an important cause, the problem I have is with the language used and assumptions it makes about what it’s like to lose your hair to chemo.

I’ve written before about how much I struggled with my hair falling out and as it continues to grow out I still to this day think of it as my biggest challenge to get through so far. Bravery is part of my experience but not in the way it’s sometimes depicted in fundraising campaigns.

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Cancer and me — January 18, 2018

Cancer and me

I have a funny relationship with cancer. It keeps wanting to crawl into my life. It has a few friends on the inside of my body who are getting the area ready for cancer to grow and be victorious. (as is the nature of FAP where pre cancerous polyps grow in my stomach, duodenum and ampulla). But I’m one step ahead and they’re out of my life before cancer can take over.

I do have a relationship with cancer’s close cousin, the desmoid tumour. Unlike your typical cancers he isn’t malignant and doesn’t spread. He’s benign, but don’t underestimate his power, he is on cancer’s side not mine. He wants to rule my whole abdomen and when left to his own means he will do exactly that and take down nearby places like my urethra in the process.

We’re getting along at the moment and I couldn’t be happier. My body has claimed back it’s own space for now.

Then there’s the people on my team, taking a stand against cancer with me. The nurses I see every fortnight for my treatment and my oncologist who makes himself available to answer any of my questions or concerns, and is finding me the best treatment. And my family and friends who are there for me all the time.

Keep trying, cancer!

2017, the year of my hair! — December 27, 2017