WHAT A WEEK
/Well I’m glad that one’s over. It can only get better from here!
Last Sunday, I had such bad back pain that the sciatica in my bum and upper thighs was too painful to allow me to sit down. On Monday morning I booked in an emergency spine scan for the Monday evening because I was worried (in fact in a blind fear) that there was a huge tumour pressing on the nerves in my back and causing all the pain. By Monday lunchtime I had developed such an acute headache over my left eye that I had lost vision in my right and had also vomited. I was admitted to hospital for 24 hours and had my spine scan as an in-patient on Monday evening.
Tuesday morning the results came and THANK THE LORD there was no tumour causing my sciatica. Simply that I have a degenerative condition in my back and it looks more like that of a 60 year old having been involved in too much exercise. My severe headache, with the loss of vision and the vomiting the day before was more than likely to be due to stress……...can’t imagine where the stress comes from.
Whilst I was in the hospital I had another brain scan and the ‘fluff’ in there has already got bigger than the last scan a few weeks ago. Whilst the Professor says that this is not too surprising because the immunotherapy that I’m now back on takes a while to kick in, it was not the news we wanted. I still feel increasingly travel sick, nauseous and pretty groggy every morning. The ‘fluff’ is meant to be non-symptomatic, but I’m not so sure to be honest.
We went to see Frank Saran on Wednesday, the radiotherapist who administered the targeted radiotherapy successfully to the beds of Terry, Junior & Tyrone last year. This was another belter of a knockout blow for the week. The ‘fluff’ in my head is too spread out for him to be able to give the same treatment. He went through it on the scans and it looks like whispy cotton wool everywhere so he wouldn’t know where to start the treatment and where to stop. The same dosage to a large area in order to cover everything would kill me off straight away.
He explained that his only option was to give whole brain radiotherapy which is a much lighter and less targeted dosage but to my whole head. This would involve me having it every day for two weeks, becoming very very tired, my brain becoming slower and me losing all my hair. Not ideal. We agreed that we would give my current immunotherapy treatment another 6-8 weeks to work before we set off down this route.
There is lots of logic behind this:
1) The immunotherapy worked so well for me before so we just have to pray that it does again
2) Giving me all types of treatment in one go will make it impossible to see which specific treatment works the best for me
3) (My own logic) I can’t cope with everything all at once so bit by bit suits me OK for now
I have now had two more hits of immunotherapy and I am lined up to have the vaccination booster on Thursday of this week. This means in 6 weeks’ time when the next scans are due I will have had 4 shots of immunotherapy and 3 rounds of vaccines. Here’s hoping and praying they do their job.
I can’t really even begin to put into words what this last week has been like to be honest. I think I’ve been in a daze and shock and I feel like I’ve been repeatedly punched sideways, knocked down and kicked in the head. BUT, I have been picked up by my incredible husband, my incredible family and my incredible friends.
The week finished with my little sister Jem, running the Brighton marathon for me in 4 hours and 9 minutes. She showed me afterwards that she ran the whole thing with my name written on her wrist to get her through it and this is what I’m clinging onto at the moment.
