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.
Next week on September 11 it’s been 2 years since my proctocolectomy, where my entire large bowel was removed and a j-pouch was made from my small intestine to act as my large bowel. Life has changed for better and worse in that time period, but overall I think that my surgery and illness has in a strange way had a positive impact on my life ever since.
I made a welcomed discovery today that not only is my hair long enough now to straighten the crazy chemo curls a bit more easily, I also have a full fringe!
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 smile to put on a brave face.
I smile to distract myself from my worst fears.
I smile to feel normality.
I smile because I have supportive family and friends.
I smile to show I’m more than my illness.
I smile because I have a future.
I smile because there is hope.