So peeps,
This is not my usual after a check up post, no, you are lucky to be getting an extra one.
Well it's nearly 11pm, I know, I know, way past my bedtime and really want to get this post done so I can go to bed, but something keeps on leading me away to piss about online rather than write this. If I were to do what my tutors at Uni would suggest, which is to reflect on why I am avoiding it, I would probably say it's because I'm avoiding it. Nothing like stating the obvious!
So, looking around the TCT ward at UCH was amazing. It was great to hear from the staff on the ward that they look after all their cancer kids in the way that I should have been looked after by my consultant in Edinburgh. It also brought everything back to me as I was shown a room that was similar to the room I had in Edinburgh. The difference being the amazing view of London from the window and the bathroom- it was massive! Also the nice wall paper on the ward, the kitchen, and chill out area with a TV, play station, pool table etc. Part of me is so glad that I had my own room and was so isolated. The other part is really angry that I didn't have access to a TCT ward and the correct care from the consultant.
The reality of it all was also brought to my attention with June (she wasn't a nurse, can't remember her role, anyways) explaining the different types of cancer that tend to appear in TYA (teenage and young adults) and when she came to Leukaemia she said that basically they get admitted and are there for at least 6 months without leaving (or don't....) It made me really realise how lucky I have been, and that whilst I say that part of me wishes that I'd had a bone marrow transplant, the idea of being on a ward for that time is not what I want, or wanted. There was also a guy there (I think 20, can't remember diagnosis) and he looked so miserable and when I smiled at him, he didn't smile back and I thought, fuck that. Fuck being tied to a hospital bed for 6+ months because I feel too ill to move. Fuck having no hair and being bloated from the steroids. Fuck not being able to go and sit in the sunshine (admittedly not for long as even when wearing factor 30 I still burn). Fuck not being able to pop home when I feel like it and being with my family, friends and my cats. I've never really realised how lucky I've been until Monday morning. And I feel like a bit of a twat for wishing that I had had different treatment. Yes my life is not always what I want it to be, and yes, I completely exhausted myself because I did a 'normal' amount of things at the weekend, so have had to take it easy this week, but my life is still mine, and I am in no danger of losing it (yet). I have been so lucky and have taken it for granted.
On a slightly happier note, here is a pic of my name from the credits of the film 50/50.
As always, with so much love, and a slightly wobbly smile,
XXX
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