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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Why I smile

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.

Catching up on my thoughts

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.Read More »

Learning to trust

I have no medical training, and probably know the most about the human body now than I ever have (I was never good at biology!) Learning to trust in professionals to treat me in the best way possible hasn’t been easy for me. I’m much better now but when I first was diagnosed I was constantly anxious that they had it wrong.Read More »