It has been a stressful and emotional few weeks for me, which have come to a head this week and led me to make a decision.
As you know, I have had the HSCT clinic in Russia on hold whilst pursuing the possibility of being treated in Sheffield, here in the UK. Today we made the decision to rebook Russia and start fundraising again. Lots of things have contributed to this decision…
On Thursday I had a meeting with a psychologist who works with my team. Amongst other things, she has occasional meetings with us to advise about difficult cases and talk about anything that’s bothering us. She is also a friend and knows about my health situation. I’ve been struggling the last few weeks, feeling very low, physically and mentally. Anyway, we spent most of our time talking about it all. It was so good to explain it all in words and acknowledge how difficult I have found this situation. She was so good at helping me to focus on what’s important and what I need to do. I think one of the reasons I have felt so down is that it feels everything is out of my control and all this waiting is really stressful … and I don’t even know what I’m waiting for!
That evening I fell at home and really hurt my foot/ankle. My leg gave way when I stood up and my foot kind of folded awkwardly under me. It’s the first time I’ve had a bad fall at home and it really scared me (and terrified the cat!)! It reinforced the realisation that I need to DO something now, before I get any worse. If I wait for the Sheffield option to run its course, another 6 … 12 months or more could go by and it could still be a NO.
On Friday I received a letter from Professor Sharrak’s registrar, regarding the outcome of my MRI scan, which took place back in June. It describes numerous lesions in various parts of my brain, but no active inflammation. I’m not sure if any of the lesions are new, as I don’t think they’ve been able to compare to my last scan (which was at a different hospital). Its worth mentioning that 4 years ago, I had no brain lesions, then some “tiny white spots” were found and these then increased in size and number between each scan. The letter is really unhelpful! And no change to my appointment (5th Feb).
I met with my lovely friend Anne on Friday afternoon and talked to her about everything – she told me how hard it is to see me gradually getting worse and how worried she is about me. She felt that no one one would criticise me for planning to go to Russia as soon as possible, having a definite date to work towards and doing all I can to give myself the best chance of getting better.
I spent much of Saturday with my children, Connor and Niamh. We went for a walk and then for lunch. They are both worried by waiting any longer and want me to be treated ASAP. Niamh has been terribly upset since hearing my appointment is in February and we all agreed we should focus on Russia and get me there as soon as possible.
So that’s where I’m up to!
I can’t tell you how much better I feel to have made this decision and to have the support of my family and friends. I am waiting for a response from the clinic with a date to work towards and will plan from there.
What do you all think?
We already have some fundraising plans brewing and some old ones to resurrect. We are open to ideas, offers of support or anything else that might help …please get in touch with one of us if you have any suggestions.
I want to say a special thank you to Sally, Anne, Connor and Niamh for helping me to get to this point this week and also to family, friends and colleagues for all your ongoing support 💚