Shrinking the Silence

Sharing a voice on living with rare disease

Making decisions for myself, not my illness — November 28, 2017
Shrinking and acceptance — November 21, 2017

Shrinking and acceptance

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.

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Starting to look like a pixie — November 11, 2017
Going through a breakup with chronic illness — October 25, 2017
When bad news strikes — October 15, 2017
Hair goals – a braid! — October 3, 2017

Hair goals – a braid!

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 🙂

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My A-Z of having a rare disease — September 18, 2017

My A-Z of having a rare disease

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.

2 years on from my surgery — September 4, 2017
10 month hair progress – a fringe! — July 25, 2017
Going on holiday with extra baggage — July 21, 2017

Going on holiday with extra baggage

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.

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