I said I had no major side effects from dose 1 of Erubulin. Spoke too soon, havnet been sick or anything, but the fatigue is awful. I have been mainly horizontal since Sunday - just about walk dogs round a short circuit and then lie down again. Housework, what is that? Have managed to make myself a veg stew today, so maybe been a bit more vertical today. No doubt by Friday morning I will feel fighting fit, just in time for dose 2 on Friday afternoon. I know fatigue isnt the worst side effect i could have, and many have and are having much worse, but it does sap positivity.. Still I get next week off so am really hoping that full energy returns for a while.
Full sympathy to anyone going through worse, or the same.
I missed the routine when my treatment stopped. It is a sort of comfort.
Sarah
My treatments gave me PTSD so I was so glad when they stopped.
Stuart x
Sometimes it is hardest when the treatment stops.
seems like you are coping well x
Ruth
I think you're doing great guns if you can walk your dogs. I get the comfort and snuggling bit and think whoever invented hot water bottles deserves national recognition. I've just bought an electric blanket - never had one before - so hope it helps with the dozing off as that's something I now need to do sometimes. You ain't weird OBS. Hugs. Rainie x
Well today should have been treatment 2, but blood test showed low neutrophils - so have to skip this week and start again 17th. At one level is a pain and I have never been neutropenic before, so bit scarey. However glad to have a couple of weeks to recover and hopefully get those white cells back up. All other bloods normal so thats good.
I was struck today by how understaffed the unit was, 2 staff down and so the treatments were running late, so am sure staff were glad to have me off the list. The waiting room was full, unusual for aFriday afternoon. I am increasingly worried about the impact of Covid and flu over the winter on our poor NHS staff, and increasingly mad at the incompetence and complacency of our Govt. And mad at people who wont get vaccinated or wear their face masks - under your nose is not good enough, especially in a hospital. I can feel the likelihood of angry words rising when I see such stupidity and carelessness.
Don't get so mad OBS, just do what you are told to get yourself ready for the next treatment.
You won't even get satisfaction from getting humpy, we are all surrounded by muppets, just keep out of everyone's way.
Are your dogs barking at the news, of course not, they are experienced to know when something is a waste of their time.
Try to enjoy your enforced time off my raving lefty friend. Xxxx
Hi ownedbystaffies sorry to hear this, but this may explain the fatigue you were experiencing. I too am concerned about the hospitals and our wonderful NHS staff. Our local hospital are currently treating A&E patients in the ambulances outside the hospital, as there is no room inside. So of course the ambulances are tied up and can’t go out to their calls. It’s all very worrying.
Lead by donkeys has never sounded so insulting to donkeys, enjoy your extra week between treatments, enjoy the dogs, and just be your lovely self when you are next in the unit, hopefully they will be sufficiently staffed.
Sarah
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