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.
For the first time since my surgeries and desmoid tumour, I went on holiday overseas, to Hawaii, with my rare diseases in tow. I was so nervous in the lead up, as with me… whenever I end up in hospital it is usually out of the blue and the last thing I wanted was to end up in hospital overseas. Luckily all went smoothly and I had an amazing time soaking up the sunshine and catching up with my good friend who showed me around the island!
It was also the first time going on a long plane trip since having my j-pouch (aka no large colon). I know that the altitude can cause a few problems so I was worried that on a 10 hour flight I’d be in and out of the bathroom a lot – but actually on both flights I had no issues at all and with my trusty aisle seat a bathroom was always nearby.
Taking a trip for me now means I have to do a bit more preparing with my travel insurance, doctors letters and making sure I have packed my medications – but it is do-able and this trip has shown I can get away with minimal issues, even while on active treatment for this desmoid tumour.
There’s something about getting on a plane and going far, far away that really made me feel I’d had a proper break from work and all the medical appointments associated with my current treatment.
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
I’ve had about 8 eye operations, 2 bowel surgeries and 2 chemo treatments, but the most traumatic experience so far has been losing my hair as a result of chemo to treat my desmoid tumour. Continue reading
The last couple of months have been hard for me. I think last year I was in the groove of things, I had recovered really well from my bowel surgeries and even when I got the news that my desmoid tumour had come back, I was feeling positive and treatment didn’t seem to daunting. It soon started growing really aggressively and for a few months it was pretty scary and I did wonder if it would ever stop growing. Continue reading