I didn’t realise there were so many things and emotions I’d built up over the two years since finding out I had FAP until now, and a lot of my blog posts so far have been catching up on this time of my life that has been crazy and overwhelming at times.
Since sitting down to write this blog I’ve actually realised that 2017 has been a good year so far. A good year for me right now probably doesn’t look like the typical 27-year old’s good year, but given what was thrown at me in 2015-2016 I’ll take it.
In January I started a new treatment, the no name drug that’s been nicknamed BMS “90210” after the TV show, because the sequence of numbers are too hard to remember. Coming in to the new year, I already knew that the chemo I had been on had stabilised the desmoid tumour in my abdomen and shrunk it. I had my first scan in April since starting the new drug and the results showed further shrinkage which was such a relief to know that it is working. I’m glad it is working because this drug I’m on is much friendlier on my body than chemo. I don’t feel bugged down after having it and I don’t get extreme fatigue like I did on chemo.
The fact that my tumour is stable at the moment also means that I haven’t had any ‘bad news’ doctors appointments for a while now. There was a period where every appointment I had with numerous specialists was bad news, or to discuss a new treatment or surgery which always weighs a lot on my mind.
Physically, this year I feel the best I have in years, which surprises me seeing as I have no colon, a large tumour in my abdomen and getting fortnightly IV treatment. But before I found out I had FAP, I felt terrible and exhausted all the time. I had no energy because majority of the time my iron levels were depleted because of the rectal polyps bleeding. Then after my bowel surgery when I lived with a temporary stoma, I also struggled a lot with absorbing nutrients and electrolytes so I lacked energy and always needed to rest and recharge myself.
I was recently at a talk as part of the Sydney Writers’ Festival, and one of the panel members was a Sri Lankan writer Anuk Arudpragasam who talked about relationships in his book The Story of a Brief Marriage (the book is set in a displaced person’s camp during the final days of the Sri Lankan Civil War). He talked about one scene, where the main character finally managed to ‘do a shit’ despite being severely malnourished and how that brought him great happiness because it humanised him again and proved to himself he was still living despite his situation.
This connected with me on what I’ve been through over the years way before diagnosis, where I felt ashamed and abnormal because I couldn’t go to the toilet properly. I’m finally at a place where I am comfortable with my new normal for bowel movements, which if someone with normal bowel movements experienced would probably be very alarmed! But for me I feel I have gained back normality in the year or so that it’s taken my body to adapt to the j-pouch (internal reservoir made of my small bowel, that is acting as my large bowel).
As I’ve said in other posts, the hardest part for me has been keeping my mental health throughout all of this and I’ve had many moments where it just seems too hard. Starting this blog has been a massive step for me, but helped me more than I could have imagined to process everything that has happened so far. Recently I took the next step and shared my blog outside of my family and friends through submitting some of my posts to a few online publications (hello to everyone who has found my blog from The Mighty!).
So that’s where I’m at so far. I’ve got faith in you 2017, don’t let me down!