Shrinking the Silence

Sharing a voice on living with rare disease

Tag: Desmoid tumour

Tuesday — October 7, 2021

Tuesday

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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 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.

Letter of appreciation — August 25, 2019

Letter of appreciation

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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. 

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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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!

Shrinking and acceptance — November 21, 2017

Shrinking and acceptance

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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

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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.