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.
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.
This January has been harder mentally than most for a while and filled with a bit of dread, I wasn’t really sure why. Continue reading
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!
I recently made a big decision, to change jobs. I start my new job this week and I’m really excited for a new challenge at one of Australia’s biggest Cancer NFPs. Over the years I have held back on taking risks and trying new things. It is easy to be consumed in my constraints because of illness and forget to live outside of my comfort zone.
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.
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.
I struggle a lot knowing that I will live with my rare diseases for the rest of my life, while there are good days and stable periods – there will continue to be complications and potentially new things that are linked to FAP that will pop up. I’ll never be as care free and my life will never be as easy again as it was before I found out about all of this. Continue reading
When you have a rare disease, you don’t have the luxury of a standard treatment path and every new option that becomes available is like winning the medical lottery. Continue reading