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.
It was several months after my colorectal surgery that I was thrown into the oncology world for the rare desmoid tumour that I have. I went through chemo and dealt with common side effects to many cancer patients, like hair loss and nausea. Still to this day I receive IV treatment (now I am on an experimental drug, not chemo) and get this at my local cancer clinic once a fortnight. I’m part of the cancer world, that no one wants to be in, but if you have no choice then it is a truly supportive place and I feel lucky to get the top quality care and empathy I do from my oncologist and the nurses.
When I do see other patients though, I do sometimes feel like a bit of a fraud. Here I am, getting on with my day-to-day life. For now I have a good, long prognosis for life, I have no side effects from my treatment and I am pain free. I live with the fear that my desmoid will start growing aggressively again, but I don’t have the fear of it spreading or of it returning (it probably won’t ever disappear from my abdomen, but as long as it stays stable I feel comfortable).
What we all have in common, no matter what our diagnosis is, is chronic illness. My body has had to endure so much to stay alive and healthy over the last few years and it does take its toll and I’ve noticed it a lot more this year. I like to think of as the moment where my body decides to catch up with what it’s been up against (I know, I did have a bit of a long winded introduction to get to the subject of my blog post).
I work at a not-for-profit charity and one of the areas of focus is on survivorship and offering people support and programs once treatment finishes and they are in remission. When I was diagnosed in 2014 with FAP, I wouldn’t believe myself that I am now saying that the hardest point of being ill is when things get better, or stable at least, and you have a long clear road ahead of you with less frequent appointments and essentially, more of your life back.
I have to work hard every day to not let my illness define me. I know I should feel happy that my appointments are every 3 months now, but there is something comforting about being busy with the plan ahead and getting health back on track. When it is on track….what’s there to do now? Luckily my doctors are very supportive of this and know that as a young person in particular it is challenging and I am getting the help I need to maintain my mental health.
One of the big impacts of having major colorectal surgery and chemo has been becoming pre-menopausal (which I’m hoping is temporary, but who knows until I stop treatment). I don’t regret the treatments I have had, without the chemo to stabilise (and now shrink!) my tumour I would have needed major surgery that would have left me very fragile. The down side is that I am now a 28 year old, who feels like a 50 year old woman. Because of my desmoid tumour that is known to grow with estrogen, I can only take a small dose of estrogen to tackle some of the menopausal symptoms I have.
It doesn’t stop my day, but I often need to make a significant effort to push through the day and not give up. When I am in a period of feeling exhausted I have learnt to give myself a break and look for the warning signs when I need to take it easy and recharge.
My body has certainly thanked me for this more sensible and restful approach to life.