Holidays, Treatment plans and celebrations

I thought I’d make the most of my hospital day to update my blog.

It’s been a while since I wrote, and that’s been for good reasons – whilst we didn’t manage to get away for a nice hot relaxing holiday (too expensive at half term!), we did manage to get away for a week to Scotland. Sounds straightforward, but I did have to get agreement to put my treatment on hold for a week.

I have to say, that was the best thing ever. It sounds ridiculous, but whilst I knew that a lot of how I was feeling was due to the drugs, you do start to question whether a lot of it is an excuse….was I making it easy for myself to be grumpy by blaming the drugs? But it became clear on my week off, just how much it was the drugs impacting me. I was so much calmer, much less ‘tetchy’ and much more happy to let things lie. I felt good too. Not so tired and my taste came back.

It was absolutely lovely and we certainly made the most of it. We started off at a forest cabin in Strathyre…..walking, cycling, eating and drinking! A hot tub was a welcome chance to have quality chats with the kids and really get back to the basics. We even found time for a game of Monopoly and a bit of scrabble! We then went on to Edinburgh (with a small distillery detour for Nick!) where we traumatised Rebecca with the ‘Rocky Horror Show’ (bad parents – had forgotten how risque it was!), did the Camera Obscura, a tour under the City, and walked up Arthur’s Seat (well the footstool next to it 😉 ) By the end of it, when we left, I was definitely ready to come home for a rest. But it was a fabulous few days away that had been much needed for us all.

The other thing that we did while we were in Edinburgh was to go and visit the Myeloma UK offices and meet the teams! I’ve been fundraising for them for nearly 10 years now and never been up to see them so it was the perfect opportunity. I was going to go on my own, but then our son, Sam said he wanted to come too. So all four of us went along. It was great to see them and speak about all the work that they’re doing! What was really amazing though was that Sam was totally inspired by the visit and has decided to do his own fundraiser towards my #50KB450 – he’s now chosen to do his own #15B415 where he is doing 15 challenges to raise awareness and money for Myeloma UK. Within 24 hours he’d blown away his initial target, so he’s really happy already! If anyone can help him with any challenges, please do! Even if it’s just to help tweet about it that would be great! Feeling super proud of what he’s doing as he’s doing it with very limited input from me!

While we were at the offices, we were also able to talk about an award that I’d been nominated for….and for which, I’m excited to say, that I won as ‘Helpline Volunteer of the Year’ for my work with Myeloma UK. I didn’t go to the ceremony, partially because I am trying to limit how much I do with my tiredness, but also, if I’m honest, because I really didn’t expect that I had a chance of winning it! I was totally gobsmacked when they told me, but very proud! If you’re interested in knowing more, there’s a link here: https://www.myeloma.org.uk/news/helplines-partnership-award-success-for-myeloma-uk/

What was also great was that just before we went to Scotland, I had seen my consultant for my monthly catch up. My numbers are continuing to reduce….now 11.3 so a nice steady decrease. They’ll be looking for that to go down to as close to zero as we can do but it’s halved now and I reckon I’m around half way through the initial chemotherapy treatment. The other news my consultant gave me was about those timings. Apparently once I get to the end of January, I’ll come off the velcade and the dexamethasone part of the DVD. Since those are the drugs that I ‘think’ are giving me the worst side effects, I’m over the moon that there is an end in sight for those. I’ll keep going with the darathumamib infusions (once a month), but I’ll basically come off everything else.

This will give my body a chance to recover for a couple of months before, drum roll, I have my Stem Cell Transplant (No.2). I’m so relieved to have an idea of when this might happen now. I know things can still change but not knowing when it might happen was really frustrating me and my control freak tendancies. At least now I can plan how life might look for the next 6 months, even if I have to change it down the line. Strange really. Most people want to put off these things but I just want to get through the transplant with the hope that life WILL go back to normal in the months afterwards. I’m trying not to wish time away now – Nick is right that we should be enjoying and making the most of it – but I do want to get past the transplant as I know how awful that will be.

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