Actually, I’m a little surprised to still be here. When I was diagnosed in 2005 with myeloma, the average survival rate was 3-5 years. I remember my first radiation appointment and the radiation oncologist said oh, 3-5 years survival. I just about fell over right there. But here I am. And even more amazing, after […]
I know that I probably do this post every year, but every year I am even more pleased to reach another ‘stem cell’ birthday. 4 years ago today, I was given back my stem cells at the Marsden in Surrey. … Continue reading →
My mother arranged the party for me. It was my eleventh birthday and she’d invited a number of my friends over, via the mother to mother telegraph. She invited an equal number of boys and girls and they began to show up at noon, the time on the invitations sent out after the MTM telegraph […]
I am thirty years old. I have just turned thirty years old. It is no coincidence. Today, the 24 May, happens to be my birthday. Great Stuff. Super. Cool.. I would prefer if it were not my birthday today. I would have said the same thing last year, but I will say it again, I […]
I have won the drug lottery, my ticket has been picked out of the hat! My lovely research nurse rang to tell me the good news, rescuing me from a weekend of anxious waiting and topping off what really was … Continue reading →
Starting off with this, please take a moment to listen before reading on, its quite uplifting. http://youtu.be/BaQdwTsVtCY That’s the spirit I am adopting, so no more doom and gloom, especially not on my birthday. That doesn’t mean I am not … Continue reading →
Free Nelson Mandela – Special AKA
Does this sound overcautious? It does, a little, to me. But… well, I’ll spare you the scare stories (you can imagine how they end). I know that my immune system is still compromised. My neutrophil counts are good, but neutrophils are “non-adaptive”: they fight generic infection. If I happened to get something my neutrophils couldn’t deal with, I would be reliant on my adaptive immune system (the bit that learns and remembers), which is led by lymphocytes. My lymphocyte levels are still very low (myeloma is a disease of lymphocytes).
On top of that, if just so happens that last week I’d certainly been exposed to more infection risk than normal, as I spent half a day digging out a blockage in the pipe to our septic tank (of which, best no more said).
Still, I was reluctant to make the call, because I knew what would follow. And sure enough it did: a trip into hospital, three hours sitting in a ward having blood tests and waiting for results, in which nothing particular showed up, being prescribed antibiotics, and sent home.
One of the nurses managed to alarm me a little further by saying it was good I’d come in now, because at least if anything flared up and I needed to be admitted, I’d probably be home again for Christmas. I’m not sure if that was meant to be reassuring?
Having by now missed the party, I got home and went back to bed. I’ve learnt this last years that it is usually better to rest when I feel ill, rather than battle on. And sure enough, on Monday morning I felt much better.
Better except for the frustration at missing the party, and the lurking suspicion that I’ve just had a textbook case of man-flu. It’s ridiculous, really, for me to accuse myself of hypochondria, but that’s what it feels like. Not that anyone else has accused me of hypochondria, I should clarify. The doctors all took me perfectly seriously. My parents – who had come for Gyles’ party – were helpful and sympathetic, and poor Marisa, on whose head it all fell, as ever, got on with everything with the same grit and determination as always. She’s had practice, of course, but that can’t make it easy. Certainly doesn’t make me feel any better about the whole pathetic charade. Even the children take it in their stride – Gyles seemed totally unphased by my absence from his party.
I hate myeloma, in the little things as much as the big things, that it does.
So there we are, Colin & Deborah, Lorna & Mike and I sitting in the garden on Sunday afternoon after the party, talking about the party, the great music, the friendly people, the fabulous weather and the amazing raffle prizes, … Continue reading →
A pity party is one “in which you spend your time feeling sorry for yourself and whining endlessly about how crappy your life is.“ (as defined by Urban Dictionary). It would be very easy and understandable for any of us … Continue reading →
When the day that lies ahead of me seems impossible to face. When someone else instead of me always seems to know the way. Then I look at you and the world’s alright with me Lovely Day – Bill Withers*One year on. Still me A year ago today, my doctor ca…