An uncertain start

Happy New Year everyone

So it’s definitely been an uncertain start to this year and I’m not just talking about Covid. Just before Christmas, I was told that my paraprotein levels (the ones that measure how bad my myeloma is), had unfortunately risen from 4.2 to 8.1. A bit of a shock to the system as, despite my numbers often fluctuating, we had expected them to go down a bit further before stabilising. We certainly hadn’t expected them to go up to nearly what they were when I had my transplant. Effectively, it meant that we had to face into the fact that my transplant may not have worked.

Gutted doesn’t begin to explain how I felt. Having had 8 years of remission the first time round, I had at least expected to have a couple of years without having to worry. This news threw that all up into the air. Suddenly I was having to contemplate the idea of more chemo, more treatments and more side effects. It was bloody scary! And happening before Christmas, Nick and I decided we didn’t want to worry anyone with the news, especially the kids, and so we kept it pretty much to ourselves.

Before I say any more, I should say that since then, my numbers seem to have stabilised at just over 8. So we are now hoping that they will stay there and that will be my norm. No one really knows what will happen but at least they haven’t gone up in the last month. There is still a chance that they will tell me that the transplant hasn’t worked but I still hope that treatment is some way off.

I have to say it was super worrying when I got told. Suddenly all the fears that I had when I was first diagnosed came back. Would I see the kids get to major milestones, would I complete my #50KB450 (perhaps more importantly, reach my 50th birthday), would Nick and I ever get to do our trip to Rome, could Nick go for more responsibility at work if I was on treatment (I felt yes, he was obviously worried). The only bonus was that because we didn’t share the news, it did really help me to pull myself out of my dip very quickly…and thankfully I’ve stayed there so far.

So we’re back to a bit of a waiting game – the story of our lives now! If my numbers stay the same, we can all celebrate for as long as it lasts. If they start to go up again, it would mean stopping my current maintenance therapy (daratumumab) and going into a new treatment. I won’t even bother listing those here and now as I hope they won’t be relevant by the time I need to think about next steps. My consultant, who we spoke to today, is positive and if he is, we are!

So, like most normal people do when they’re faced with adversity, what did I do? Did I sulk in my room? Did I decide to focus on my diet? Nope, I decided to pop the pressure on and sign up for the Myeloma UK London to Paris bike ride 2021!!! At a time when I’m still recuperating from my transplant and still held back by the dara 🥴😂 I thought that signing up for a 308mile bike ride over 4 days was a good idea! And to be honest, as much as I joke about it, I do think it’ll be so good for me in terms of keeping a positive focus, keeping fit and losing some weight. All of which I need to do. And even if treatment does start up differently, it will be important that I can look after those other areas.

So if anyone out there can provide me with a decent electric road bike, any equipment or a new body, please get in touch! Or you can donate here

And for the time being, we just want to wish everyone out there not just a happy 2021 but hopefully also a healthy one. Keep safe and hope to see some of you this year.

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