Apologies for it being a considerably long time since my last blog. Initially this was because I was having far too good a time enjoying feeling almost normal again. However, this was soon not the case and I was admitted to The Royal Marsden for a good couple of weeks with a weekend's break in the middle.
Anyway, I shall start from the middle of October, when I had a lovely lunch out with Grace at Zizzi's - it was brilliant to catch up and it was so kind of her to drive all the way to Kent. It's so frustrating not being able to drive at the moment but the drugs I'm on just completely wipe me out. I managed to catch up with Lucy and Ellie and bake an extremely yummy coke cake and had a delicious lunch at the Bake House in Biddenden. Lottie and I also went pumpkin picking and carved them out for Halloween, as you can see below.
We then managed to squeeze in a visit to Boo's for lunch along with my Grandparents, it was so nice to see them all. Sara, Will, Thea and Etta kindly visited us briefly on Halloween, it was good to catch up. Can't wait to catch up with everyone properly at Christmas :).
Phil and I managed to get up to Bluewater after a standard Monday visit to the Marsden. We saw Spectre in the imax there, which was pretty cool, and started a bit of Christmas shopping. Amy visited at the beginning of November, and we went out for lunch at The Oak on the Green in Bearsted, which was very nice. Again, it was so kind of her to drive all that way to see me. Phil and I also finally got to catch up over dinner with Sean and Kath at The Park Gate, it was good to see them.
Unfortunately, the following day I started feeling unwell. That week, because I had been doing so well, my doctor wanted me to start reducing my Prednisolone so that I could begin being weaned off my immunosuppressants. However, my skin didn't like the idea of this very much so I stayed on a slightly lower dose instead of completing the weaning process. My guts also had a bit of a tantrum about the lower dose, and I started having stomach cramps that wouldn't even go away with Codeine and Paracetamol. I was feeling really unwell and had to cancel plans to meet up with Maddie and spending a nice weekend with Boo and my Grandparents :(. The following Monday, I had my bone marrow aspirate and check up with the doctors who then admitted me to sort out the stomach cramps. I discharged myself on the Friday as I was fine by then but throughout this time the small amount of neuropathy I had been experiencing had also got worse.
I was experiencing tingling in my fingertips and toes initially but now this has progressed up to my elbows and knees, and is very painful as well. I had a nice weekend at home despite the pain, but was back in Monday for a check up, and the doctor admitted me again to treat a virus that can reactivate post stem cell transplant, and had in my case. The drug required to treat it had to be given IV and can affect your electrolytes so I had to stay in for at least a week of treatment. There is some concern though that this drug has made my neuropathy worse. However the doctors don't really know and have referred me to a neurology specialist at St George's Hospital to try and work out what is going on. I had to have a brain MRI, which came back fine, and I also had to have a lumbar puncture to take cerebral spinal fluid (CSF) samples. The results of this I'm still waiting for but I do have a high amount of protein in the sample, which is indicative of inflammation, so they're keeping a close eye on me for a good while until I have my referral appointment and more results come back. It does mean that at the moment I'm on a high dose of Tramadol and Paracetamol just to take the edge off the pain. I got discharged yesterday but have to go for a check up tomorrow, and I'm hoping that I might actually be able to stay out of hospital this time!
A big thank you for everyone's support throughout this time, and for all the visitors I've had to the hospital - I'm sorry it's not the easiest place to get to!
Much love to you all xxx
