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.
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.
Around this time, 2 years ago, I first stepped into the cancer clinic that now is a regular spot for me. I was nervous, uncomfortable and the mere thought of seeing an oncologist just didn’t seem right at my age.
I was coming into the situation in a less than usual way. I didn’t have a cancer, well not malignant cancer. Instead I started the process of explaining to the nurses that I have an aggressive benign tumour that was rapidly growing as cancer often does. I had no specific number of treatments, I wouldn’t even know if the chemo I was on would work at all, there were only a handful of other cases to go from.
I was also nervous having been through the IVF system which I had a very bad patient experience and felt like I was just being shuffled through the process. Sadly there are so many people affected by cancer these days so I thought I would just be another number in the oncology system.
I was very wrong and in fact the oncology doctors and nurses I’ve been lucky to have are the most caring and empathetic in my whole medical care.
I didn’t realise starting the chemo journey that there would be so many other chronic illness things to pop up as a result of the underlying tumour. Since meeting my oncologist I’ve then been referred on to multiple other specialists for things like ureteric stents, hormones, bone density tests, yet my oncologist remains a central point who understands everything and that is a nice reassurance to have.
Then there’s the regular blood tests before every treatment. This started to me as a routine, admin part of my health but now is also part of my care, where the receptionist and staff at the pathology clinic know me well and do their best to help me get seen quickly each time I go in. Simple acts like this make a tedious life as an oncology patient bearable and human.
I don’t know what the future holds for my treatment but I know I’m in good hands in the oncology world.
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!).
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.
I often write and think about how unfair it is to face such health challenges in my 20s when I should be at the prime of my life. It was also my young age that almost didn’t get me diagnosed in time to have preventative surgery. I was too young to be considered to have cancer, instead I was just not exercising enough and needed to improve my diet.
On the flip side, I feel that my age has really contributed to me getting such great care and having doctors, nurses, allied health, secretarys, admin staff go the extra mile to make my life easier and digging for treatment options that factor in how much life I have ahead of me.
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.
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.
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:
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.