Shrinking the Silence

Sharing a voice on living with rare disease

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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Reflecting on my rare disease journey — July 4, 2018

Reflecting on my rare disease journey

I started my blog and sharing my story because of the isolation I felt, the intense silence I felt around rare disease in my daily life.

Hopefully I have helped a little and will continue to shrink the silence for those who read my story.

In my own experience, since sharing my story and joining the online social community, I feel like the silence has shrunk for me.

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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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January — January 31, 2018
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!

Shrinking and acceptance — November 21, 2017

Shrinking and acceptance

I call this post shrinking and acceptance because both of these things have happened with my desmoid tumour recently! My tumour has been stable since the start of the year, not to mention continually shrinking, and this has helped me accept it as part of my body that will probably always be there, but now I feel confident that it can be controlled and I am under great care.

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My A-Z of having a rare disease — September 18, 2017

My A-Z of having a rare disease

Appointments and adding a new doctor to my list every year.

Blood tests, so many that I no longer flinch when the needle goes in.

Confusion,  navigating the confusing world of the unknown.

Dehydration
and still taking a long time to realise when I am dehydrated.

Enduring the hard days.

Fatigue, learning that fatigue is much more than being tired.

Grief for my life before diagnosis.

Hope for more research, treatment options and my desmoid to disappear.

Intuition, knowing my own body and when something doesn’t feel right.

Juggling multiple things at once.

Kindness of people around me.

Laughter, it’s the best medicine for me.

Maturity, learning so much more about myself and what I’m capable of.

Nurses, being under great care every time I go for treatment, a procedure or surgery.

Operations and recovery.

Positivity, trying to be positive whenever I can.

Questions, endless questions.

Research, I’m great at searching google these days.

Support from my family, friends, nurses and doctors.

Trials, when you’re rare, you need to take experimental drug options that are available.

Ureteric stents to protect my kidneys.

Vacations to have something to look forward to (I would usually say holidays but I’ve already used H!).

Work, feeling lucky I can still work full time and have that routine.

X-rays and scans, “breathe in and hold your breath”….”breathe”.

Yearly endoscopies to check for polyps.

Zzzzzz on the days I need extra sleep.