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.
Right now I feel that my life has been put on hold for the last 2 years. First it was the 6 or so months after my major surgery that I needed to recover and get used to my new ‘plumbing’. Then when I was finally better I was starting to plan my life again like looking to challenge myself more at work and booking in holidays for the end of the year. Then I found out that my desmoid tumour had returned after surgery and was growing aggressively. I then found myself with bowel blockages due to the very large tumour and being advised not to go on my holiday as I might need emergency surgery, and doing that overseas wouldn’t be the best. That was probably the worst period because I was very concerned and scared about my health and also frustrated about the limitations it was putting on my life and what I had to miss out on.
I feel like now I have come out of one of the scariest times of my life and feel much more confident that I will overcome this desmoid tumour. I still feel overwhelmed about how I’m going to stay positive and get through my ongoing treatment, where there is also no set end date except for when my tumour decides to shrink to a decently small size, and stay that way for a decent period of time. For now I am going to try and focus on a few things that help take my mind away from my health.
I want to go on a holiday, overseas, somewhere different where I can feel I’m having a proper break. At the same time I’m extremely nervous to travel in case anything happens and I need to go into hospital in a different country where the doctors don’t know my issues or medical history. But I do know deep down a holiday would do me a lot of good so I am aiming for a July getaway. Then later in the year I am a bridesmaid for my friend’s wedding in the Whitsundays, so a week away with great friends is also something I’m looking forward to a lot. I always find that holidays are what keep me going and I have had some great holidays around Australia in the last year, which I’m so glad for and have definitely kept me sane.
Stay out of hospital
Last week I was in hospital after losing a lot of fluid, I fainted while I was walking to the shops and then needed to stay a few days in hospital to replenish the electrolytes I had lost through lots of IV fluids. Being back in hospital made me feel feel frustrated again and lose my positivity, instead I was thinking about how this disease will keep getting me and wishing I was completely healthy. Yet this is only the 4th time since my FAP diagnosis, surgery and desmoid tumour that I’ve had to go into emergency and stay a few days in hospital, and for that I feel so lucky.
So I also am going to take extra care to look after myself and keep myself out of hospital because while things are hard every day, it’s much nicer knowing that despite all my issues, it rarely requires me to be in hospital.
Changing up my look
I still don’t love my short hair and the way I look. Then there’s the curls which are impossible with short hair. I try to straighten the unruly bits of hair that curl up at weird angles, but because it’s so short the straightener makes stand up on end even more. I also can’t help but miss my long hair, being able to choose if it’s a good day to leave it down, or if it’s a bad hair day to disguise it in a messy bun. I can’t do anything to speed up the re-growth, but I can at least dye it and make it a bit more fun or at least mix it up a bit – so that’s what I’m going to do, and maybe it will make me like my hair more as it is.
Keep talking and keep busy
I’m generally a lazy person, I like my alone time and I like resting! I easily fall in to the trap of not going to the effort to do things, but I feel much better when I do fun, different things and recently I’ve stopped doing that as much. So for the next few months I am going to aim to find new things to keep me busy, alongside my lazy days watching Netflix. Anything I can do to distract myself from feeling sorry for myself or thinking about my health makes each day much much easier to get through. Yoga has been on my to-do list for a long time now, so my first thing for next month is to go to some yoga classes.