Shrinking the Silence

Sharing a voice on living with rare disease

Tag: FAP

I would make an excellent undercover cop — September 22, 2020

I would make an excellent undercover cop

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I’ll start by saying that I have no ambitions to join the police force, if anything this analogy is a sign of my love for crime shows!

As I’m sitting here in the cancer clinic for my three-weekly treatment, I’m also working from my laptop and to the best of my colleagues knowledge I’m “working from home” Being chronically ill like I am, I have gotten pretty good at my undercover life as a fully functioning member of society and I am aware of my privilege to be in a position to do this. Those who aren’t are in no way any less part of society.

But there are moments where I stop and think – what on earth is going on here.

This morning is one of those where I reflect on what has become normal for me, is probably unfathomable to your otherwise healthy 30 year old. I say this not for sympathy because in all honesty I have come to terms with my life and adapted my expectations so I am now incredibly happy with what I am ABLE to do (with a few mid week sneaky hospital admissions here and there)

I do chuckle to myself thinking of acquaintances reactions if I told the whole truth: oh yeah I was in hospital overnight for surgery and back in the office today… my plans for Friday night? Oh my oncologist is admitting me to hospital for IV fluids.

Jokes aside, the secret life never ends even when physical symptoms or ailments aren’t in my life. There’s always the mental symptoms when I’m going on with my life like – is my tumour growing? It’s stable now but what does this look like in a few years? I know that many people I’ve come in touch with through social media can relate to this feeling. You can be medically released from treatment but once you’ve had a diagnosis of anything, it’s with you for life in some form or another.

I’m so appreciative of my treatment team who have adapted their ways of talking to me and treating me with my age in mind. Not easy when your main specialists are colorectal and oncology …. I’m not the usual demographic that’s for sure. It’s had a huge role in me being able to achieve and experience things a twenty something year old, and now 30 year old, should.

Chronic illness in times of covid — August 9, 2020

Chronic illness in times of covid

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It’s been a while between blog posts! I read my last one again which was from March (a whole lifetime ago). I was writing about deciding whether to go on holiday, when I thought I still had a chance of going to the UK. Quite funny now given how things escalated pretty soon after that post.

It’s got me thinking though that it has been an interesting experience being someone who still needs to have regular oncology treatment and my regular FAP monitoring scopes when really I’d rather avoid these areas… mainly for the safety of more vulnerable patients.

March – June was a very stressful period because I had three procedures I needed to get done… and all of them were pushed back a few times because of covid. I finally got to my gastroscopy scope date in May, and low and behold, I presented with a random fever so I couldn’t have it done that day and instead had a covid swab. I got the swab done to be sure but also because I was due for my next iv infusion at the cancer centre in a few days and the thought of going there with covid was terrifying.

This then sent me into a huge stress because I had colorectal surgery booked in a week later which had been a hard spot to secure because of restrictions on elective surgery. I was so worried about catching not only covid but also a cold or the flu… anything that could stop me from going ahead with the procedure. I cancelled all plans, mainly stayed inside and was quite obsessively checking my temperature. I’ve never been more relieved than the moment I got my temperature checked in pre-op and it was all fine.

Thankfully after that went ahead my “I can’t get sick” panic eased and I then managed to have the other two procedures pretty stress free.

I don’t need to have my next procedure until December and it’s been a nice couple of months off and only having my three-weekly oncology treatment to go to.

Then for me there’s also my tendency to mask my chronic illness to just get on with living my best life and being a normal 30 year old. So it did actually take me a good month or so into covid to realise I did need to be a bit more careful for my own health. I admitted to one of the anaesthetist’s that I didn’t immediately consider myself in the high-risk category, to which he gave me a knowing smile as he had just read my 5 editions of hospital notes which definitely suggested I was high-risk!

Sometimes I do forget that my body is hindered by of all my surgery, my ongoing treatment – and the fact I can forget sometimes is telling of the skills of my surgeon and my oncology team for getting me on a treatment that gives me little to know side effects.

It hasn’t been easy navigating health things during covid, but the hospital and treatment centres I go to have been very good with covid safe measures, and whilst I faced delays… I always knew I would get a new date very soon, so I am very lucky.

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

The wake up call to listen to my body

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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

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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

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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

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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

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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

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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

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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!