Shrinking the Silence

Sharing a voice on living with rare disease

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

I would make an excellent undercover cop

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

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.

Letter of appreciation — August 25, 2019

Letter of appreciation

I never would have anticipated having such grief and emotions over your departure from my treatment team. 

I’ve cried multiple times and then when I thought I had come to terms with the change, I felt all the emotions again when I had my first consult with my new oncologist. 

Funny that just like any relationship breakdown, there are triggers and reminders. The trigger for me the other day was being in the consultation room where so much has happened, with a new doctor – starting a new chapter in my desmoid tumour adventure. 

I realise that incredibly good and incredibly bad news was delivered there… and ultimately… trust, report and a caring doctor/patient relationship was formed in consult room 2. 

I’m not an easy person to win over. I like to challenge things and find ways to maintain that little bit of control in my life. You picked that up from the first few appointments and worked that into how you talked to me, and it didn’t go unnoticed. 

In the early days, every time i saw you I was incredibly nervous about what news would be shared, what my scan results would be. Every time, you delivered news to me in a calm way that made me feel I could keep going and have complete trust in the process.  Here I am, three years later and still showing up every 2-3 weeks for treatment.

Trust takes time to build, but with my rare and aggressive tumour…time wasn’t on our side, yet you managed to get me onboard with starting chemo. When chemo wasn’t slowing down the tumour at a satisfactory rate,  you took ownership of my care during a multidisciplinary team meeting where the general consensus was to operate. That was the moment I really knew you were on my side and were willing to go all out to find the best treatment for me – always with quality of life in mind. 

A rare disease and tumour like a desmoid isn’t easy to come up with a treatment plan for. It really touched me that you found opportunities whilst overseas for conferences to reach out to drug companies trialling treatments for desmoid tumours to find out more. 

You may no longer be my oncologist, but I will always remember everything you did for me through the hardest and scariest time in my life. 

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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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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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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Another year of being rare — February 28, 2018

Another year of being rare

Today is Rare Disease day. Last year on this same day was the first time I shared my story on social media and I can definitely say I’ve never put myself out there like that before, but I’m so glad I did because in the rare disease and chronic illness community, we need as many voices out there. I’ve also learnt more about myself than I could have ever imagined at the same time.

The hashtag for this year’s Rare Disease Day is #ShowYourRare.

Here’s what my rare looks like in a year:

  • Close to 50 regular blood tests, then add a few from hospital stays
  • My portacath accessed close to 50 times for IV treatment
  • Give or take 30 hot and humid summer days struggling to stay hydrated with no colon – the struggle is real
  • Unknown impact on my fertility
  • 6 day procedures
  • 2 new doctors making it a total of 6 specialists I regularly see
  • 1 amazing treatment with no name, keeping my desmoid tumour stable with next to no side effects, and all thanks to research.

Research also happens to be the theme of 2018 and is so important for rare diseases. Trial and experimental drugs, like what I’m on at the moment, offer so much hope for diseases like desmoid tumours where the treatment path isn’t as clear cut because there aren’t enough patients to base success rates off.

This year I will need to rely on research and other options once again because the stock of the drug I’m currently on expires this year.

I am also so lucky that my rare also looks like this:

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I have my challenges but my rare disease was caught in time to be treated effectively and not reactively, and I can continue to live a full life.

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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