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.
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 »
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 »
Today is International Nurses Day, and as a patient I I couldn’t be more thankful for the kindness and expertise I’ve been shown in my care by nurses. Through my eye surgeries, my bowel surgeries, the day procedures I’ve had done, my few trips to emergency and currently at the cancer clinic, I’ve always felt like I’ve been in great care.Read More »
I struggle a lot knowing that I will live with my rare diseases for the rest of my life, while there are good days and stable periods – there will continue to be complications and potentially new things that are linked to FAP that will pop up. I’ll never be as care free and my life will never be as easy again as it was before I found out about all of this.Read More »
When something is less than perfect, we usually feel the need to cover it up or find a solution to make it better and more normal. I have big scars on my stomach from my surgeries and how I feel about them has changed over the last year and a half.Read More »
When you have a rare disease, you don’t have the luxury of a standard treatment path and every new option that becomes available is like winning the medical lottery. Read More »
I’ve had about 8 eye operations, 2 bowel surgeries and 2 chemo treatments, but the most traumatic experience so far has been losing my hair as a result of chemo to treat my desmoid tumour.Read More »