I’ve been home a week after my stay in Southampton General Hospital for my stem cell transplant, and it’s been tougher than we all expected (in spite of being told that it would be difficult).
For a start, on the very night I came out of hospital Heidi came down with a bug and was violently sick during the night. I was torn between wanting to get up and help and knowing that I needed to keep clear of infectious people for my own safety. Fortunately, she wasn’t sick again, but developed cold/virus symptoms. She saw the doctor the next day, who was almost useless – just took a quick look, diagnosed sinusitis and prescribed antibiotics.
Two days later when she had chance to ask for a second opinion from our brother-in-law, David, who is a very well-respected local GP, it turned out to be a viral infection. She is feeling better now.
So Christmas Eve was hard work, with bits of present-wrapping left to do, as well as staying up late and carting sacks of presents up and down stairs.
Christmas Day was lovely. The kids had all bought me really fantastic presents, which made me feel really special – I don’t think I’ve had this many presents since I was a teenager! And Heidi’s mum and dad came over and cooked Christmas dinner for us, which made it a lot less strenuous than it could have been.
My only frustration was that, because of my damaged taste buds, I could not manage to eat my normal huge portion and I couldn’t taste anything, even when I covered everything in cranberry sauce!
And my limitations have increasingly depressed me, to the point where I admit to losing my smile. The comment has been made that I was chirpier in hospital, and I admit to being slightly sullen, dragging myself off the sofa only when I really have to, and only really springing into life when someone needs to have a go at the kids for something. To be honest, when I have things to do, like replacing our TV stand that broke, or helping to set up some of the kids presents, I can’t seem to hide how physically difficult I am finding it. All this is making me come across as a bit of a grumpy old man.
I’ve tried to explain that it was easier in hospital to be chirpy for 2-3 hours when Heidi and the kids were visiting, and even then I would be sat in bed while chatting with them. And then when they’d gone I could immediately put my head down and have a kip without getting off my bed! That’s entirely different to having to get around the house and keep up a smile for 16 hours.
I am also fed up of two things mainly. The biggest thing is my lack of taste. Everything tastes horrible. The only things that are vaguely palatable are very sweet things like trifle or ice cream (or cranberry sauce). I can’t even stomach chocolates or cake. So I don’t tend to eat very much, so I’m still losing weight. That’s still not a disaster, as I’m still a bit overweight, but it has made me realise how much I enjoy eating food!
The other thing is my lack of energy. I know that they warned me of this, and it’s probably worse because of not eating properly. But almost every time I stand up or walk around the house I get light-headed and dizzy. Things that would normally be easy for me are really hard work. Even when I give up and go to bed, I go out like a light for two whole hours, and still don’t feel any better afterwards!
It’s hitting me that everything I’ve been warned of is likely to be true. This is going to be a long recovery process.
Today I had to go into Basingstoke hospital primarily to have the stitches taken out that were left after the removal of my Hickman line, but also to have a blood test and reconnect with my haematology doctor. It was all pretty unremarkable. All the blood counts are fine and apparently I’ve done very well.
But it still feels like a long way to go before this round of struggle is behind me.