If you’re someone who thinks this blog is nothing but self indulgent ramblings, you may want to skip this post!
I have no good news to tell you, as my pursuit of HSCT in the UK has hit a serious set back this week. I phoned the appointments team in Sheffield (yet again) and was told that I have finally been allocated an appointment … on 5th February!!
I mentioned that Professor Sharrack had wanted to see me before 20th September and he confirmed that was the case, but that 5th February is the next available appointment.
Having already waited so long, this was really tough news to take. I appreciate fully that our health services are under immense pressure and that demand for this treatment is increasing, as more and more people are hearing about it. The situation is nobody’s fault (well, apart from the politicians who have underfunded the health service for years), but it’s still very upsetting.
I have spent the last couple of days talking with family and friends, trying to work out how best to proceed. Every day I am getting a little bit worse …I can’t keep delaying and delaying.
I have emailed Professor Sharrack to raise my concern, explain how this is affecting me and to ask if he can do anything to help. I suspect he has little to do with appointment allocation, so probably doesn’t know what the situation is. So far he has not replied.
I have also initiated a GDPR request to obtain a copy of my July scan report.
From next week I will be phoning the appointments team on a regular basis to see if there have been any cancellations (I don’t hold out much hope for this …if you’ve fought like mad to get an appointment at the HSCT Clinic, you are unlikely to cancel it).
If we can’t get some clear answers in the next few weeks then I will be back in touch with the clinic in Moscow and relaunching my fundraising campaign. I must admit that at first I couldn’t really face doing this – it really is such hard work! But I have been reassured by family and friends that they will help as much as they can and some have come up with a few fabulous fundraising ideas already!
It has been a tough week for all of us but I’m feeling a little calmer now. The road to HSCT has been long and arduous, with many unexpected bumps along the way …but I WILL get there in the end.
Thank you to everyone who has supported me over the last few days …you really are amazing 😘