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!
It may seem strange to dedicate a year to my hair, but it was both the lowlight and highlight of the year for me, and where I am with my hair now leaves me feeling really happy going into 2018. For the first time since losing my hair at the end of 2016, I can finally imagine myself having long hair again at some stage.
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.
I’m really happy with how my hair is growing out. A month or so ago I sacrificed some length, to give my hair some shape – and now I can really see the difference it makes. My fringe is long enough now to do some fun twists and braids, and when my hair is straight it forms a really nice pixie 🙂
It’s a topic I’ve been avoiding writing about, but a pretty significant part of my story and where I am today. I was in the middle of chemo and about to start a new experimental treatment when my boyfriend of 6 years broke up with me at the start of the year.
Recently I got some news that was not so great about new complications with my FAP condition, that has challenged my positivity and made me once again come face-to-face with the devastating and unfair disease that FAP is. Continue reading
Last week I was so lucky and excited to stand by the side of my good friend as she got married. I was so worried about what I would be able to do with my hair as it is still very short – but the hairdresser was very nifty and managed to do a braid for me, which also matched the styles of the other bridesmaids with longer hair. Most importantly, the bride looked absolutely stunning 🙂
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.