Something I felt that I should talk about. The C-Word, the elephant in the room regarding HSCT and something that is potential a very delicate subject.
I’m absolutely not going to suggest that I’m any sort of authority, but totally wish to talk about how I’m getting on with it personally. In the hope it helps others who are considering HSCT and the prospect of chemotherapy for themselves.
Realising that this is a delicate subject, I for one am so fortunate that I have never had anyone close to me require life saving treatment with use of the drug to relieve them of their cancer or similar. Nor have I witnessed close hand it’s effects, …and dare I say devastation?
I’m so grateful that my requirement for chemotherapy is to bring relief, and I totally understand what it could mean for others.
Well over a week ago now I received my first dose. A four hour sit down, four days in a row. How was it? …I joked about it being very comfortable, like being sat back in a Winchester chair… And I still stand by that, absolutely, it may well have been water passed into my veins.
I did need to go to the loo a lot, a lot, lot! I think each dose was probably around 4 litres worth, plus saline drips and steroids too (I think). No biggie, just wheel the drip machine into the loo with you – sit comfortably.
And that was my four days. I’ve said before that I did research into the HSCT treatment I was receiving, but wanted to go in blind to what I would experience for the benefit of others. Not selfless, just incredibly frustrated at the scare stories, the expert advice we receive from medical experts suggesting we MS’ers are better off sticking to DMD’s and symptom drugs, rather than GET RID for ourselves. Using my blog to show others hopefully what to expect.
Now sat here long into my isolation time, I am feeling it’s effects. BUT NOTHING MAJOR – I’m pleased to say. Importantly, it has worked too, my blood tests confirm that my body is clear of the Leukocytes that have harmed me for the last eight years.
I’m already beginning to feel the benefits of a system free from MS too. (Woah, bit of a slip there – I need to save that for my next isolation post) 😉
The chemo effects, that’s what we’re talking about here. So firstly, yes it does kind of take what can be described as a good scrubbing brush to your digestive system. Though personally I had no nausea, or affected my appetite in anyway. But the passing of what you have consumed is the tricky part. I’ve gone many hours without needing, and in some cases only minutes apart. It can be small simple and painless, I have had one bout of early morning diarrhea, but far more of the former! Though this can lead to much paper use sadly and the effect that that can have on our posterior (not pretty reading – but being honest).
Skin. Well I’m a bloke, and my skin is ‘a bit dry‘. Now my wife, would rightly say ‘incredibly so and really need to look after myself’. There isn’t much I can do from isolation currently, but in all honestly and unlike me, I am looking forward to applying the moisture back. The current dryness could also come from the vodka swabs/bathes I’m using to clean with in the morning, as well as the added hand cleanser I’m using to look after myself. To some it could concern, but simply maybe after you’re home, just a good pamper trip to Boots (drugstore) for a job lot of quality skincare for a few weeks application might be all some might need to remedy and get back what’s been lost.
Worth adding. On the whole my body feels fine, I’ve never had greasy skin and my dryness appears to be mainly around my arms and hands.
Blemishes have arrived, though very few. more it seems where I might have knocked my feet rather than sprung-up. A blister on one foot, and some darker streaks have appeared close to toes. But all very minor.
Hair. Again it was well over a week a ago I shaved my head in anticipation. But I’ve still not noticed any loss at all. No gaps, areas – still just a headful of fuzz.
So there we are – that’s my chemo to date. It’s worked – and clearly it’s benefits FAR outweigh any negatives, into total insignificance.
I will add to this page as and when/if? Anything changes.
I really hope this helps any concerns with what many of us consider to be the scariest part of HSCT. …but is it?