So I’ve now been on treatment for 6 months and I am ridiculously fed up with feeling exhausted and good for nothing for 3/4 of the week. What is worse, is that my figures for the last 2 months haven’t improved, if anything, they’ve gone up ever so slightly. We’re still hoping that’s a blip but it does make you wonder why you put yourself through the grimness of chemo if it doesn’t do what it’s meant to do.
I shouldn’t moan. (But I will).
Other people have it far worse than me. Their side effects are worse (or they say they are!), they suffer with bone issues on top of all of the chemo treatment, they have other significant side effects or additional complications that make it worse.
But I just hate not being able to do the things I normally take for granted. Some days, I haven’t even had the energy to walk Marley. Others, I can’t make dinner for the kids and they have to do it themselves while I’m asleep on the sofa. The ironing piles up to the point the MIL offers to do it. I can’t really work now as I can’t focus on it and I don’t know when my bad days will happen sometimes, and working, even in my job, can take it out of me. Sport, and especially netball has had to be paused. I can’t go out more than one day at the weekend and even that, exhausts me the next day. And then when I do feel well, I do silly things like wallpaper stripping that totally wipe me out afterwards! That’ll teach us for continuing the house renovations right up to transplant date!
Basically, my whole life has pretty much gone on hold, and its a total drag if I’m honest. I’ve gone from feeling (even if I wasn’t ‘myelomawise’), 100% fine to feeling like I’m about 50% most of the time. It’s a strange concept taking drugs that make you much worse before they make you better. I know when I get to the transplant I’ll feel like 0% for a while, but it feels like the journey moves homeward at that stage. At this moment in time it still feels like I’m touring with no idea of what direction I’m going. Maybe I’ll feel better once I have a transplant date in the diary.
Anyway, I’m ok so this really isn’t a call for sympathy. Last week I was REALLY fed up, this week only semi fed up (at the moment). Today I feel ok – I normally do on a Monday until late evening…that’ll be the devil steroids (although they seem more under control now and the sleeping tablets help counteract that side of them too). Wednesday and Thursday are my worst days normally. And I just have to make the most of the weeks where I don’t feel bad on a Tuesday or Friday….I never quite know. Perhaps I need to avoid that wallpaper stripping in the house….but I get so bored if I don’t do anything!
Enough of the wingeing though. On a positive, my friends in Belbroughton arranged a brilliant ‘no frills’ disco for my #50KB450 at the weekend. It worked brilliantly, hopefully wasn’t tooooooo much work for them all, and raised £500 for Myeloma UK and my target. And it was loads of fun!!
It will take us over the 10% mark which is great! If you want to see an update on what has been going on just pop to my #50KB450 tab at the top of this page. The next event is that Deb and Brigitte are doing a 3 hour body combat event in Stourbridge on the 29th Feb.
Finally a big Happy 18th Birthday to Holly for Wednesday! She has really generously asked friends to donate to her fundraising page for #15KB450 instead of presents – not many 18 year olds would be that selfless! She’s also doing the 2020 challenge and running that many miles in 2020….mental! If anyone else would like to support her, it would obviously be great!