Discovery Channel
Starting to feel like a topic.
The consultation went really well. All the pros and cons laid out in terms we could understand and completely relate too. My vision is deteriorating and will continue to do so thanks to the radiotherapy so vision loss being the biggest risk is actually only a matter of time anyway. Decision made. Following the biopsy procedure in Liverpool I have to say the team there filled me with support and encouragement as OM is what they do- Day in Day out. I’m pleased to say that several of the people they do see who are referred to them for investigation are free to walk out and continue their lives as normal. That would be so cool right now I have to admit. So with research forms signed and consent given I again wait for results. OMG- the last 4 months I have WAITED for so long for so many different results. It’s exhausting. It’s like watching a roulette table spinning in slow motion in outer space. Red or black, red or black, is it, isn’t it, will it, won’t it? Arghhhh! Tired. Body’s very tired. Brain’s a little mashed too and my veins, well, 3rd time lucky is my new moto in the anaesthetic room. Canular ‘v’ dehydrated system and multiple scar tissue’d entry points makes for an incredibly apologetic bunch of medical professionals as they attempt re puncture number ....?.... My arms look like I have a serious class A habit and my hands resemble those of an amateur boxer. Actually so does my half closed swollen eye come to think of it. It’s been funny being patched again- all those strange looks and questions. It becomes harder to answer them and takes longer now too as I’m learning more about this strange and rare condition. It is relentless though. I admire my family for happily walking out in public with me without embarrassment or shame, even they are starting to attempt to divert people from querying my appearance. I asked my doctor if he thought I was being a hypochondriac the other day. Having never been one in the past, I’m not actually sure what denotes one. I do find myself worrying when I don’t feel right; that something is really wrong- then I remind myself that something actually is really wrong so I’m learning to be slightly less expectant of myself and accept that I’m knackered. Pure and simple. So back to the waiting and the wandering that accompanies it. A week filled ahead with more hospital appointments, another scan and some blood tests (yippee- something else to await results from) and a bake sale!!!! The fun part of this diagnosis. Still loving the charity bit. It’s so rewarding and super humbling. I think it should be like national conscription and that everyone should have a bash at charity work/fundraising and awareness campaigning. I love it. It really brings out the good in people and makes everybody unite. I’m desperately awaiting my return to Yoga prior to 22nd April’s Charity Yoga event! I will be back on my mat and with a bit of luck- I may be able to maintain my balance (even if I have to sit down with my eyes closed!)
