>Bollocksy bollocks (sorry mum and dad!)

>Bollocksy, bollocksy bollocks!!!!

Well, I had my results today and sadly they didn’t quite reflect the positive attitude that I have been feeling this last couple of months.

Long and short is that my haemoglobin has gone down to a level of 9.9 from 10.9 (paraprotein as an aside back up to 43) and my consultant isn’t very happy about this. He has basically said that if it doesn’t go up again in the next 2 weeks that he expects the recommendation to be that I start chemo in the summer. Gutted or what. So I’ve given blood today to check my lightchains and my ferratin levels, and then I have to give it again on the 21st. He’ll then take it to a panel on the 22nd and on the 23rd we get to find out if he thinks I need treatment. I’m off on hols that day so it’s not great timing but hey you can’t choose everything.

Funnily I seem to be handling this ok. I think that perhaps I have spent the last 12 months (literally to the day!!) considering what could happen so when it has become closer, I’ve been expecting it. Yes, I’m gutted. Yes, I’ve shed a few tears. But I’m doing ok. And that’s great to me.

Again I need to thank C for his words of wisdom about what chemo can stand for. It sounds so scary to most of us, but it sounds like the reality is that CTD (which is what I’d be on) has lowish side effects and that I’m likely to be lethargic, followed by manic, followed by hair thinning. But the whole stereotype of no hair, throwing up everywhere and not being able to live, seems to be unlikely for my situation. And that all sounds doable đŸ™‚

There is still a chance I won’t need to do this. If my haemoglobin goes up again,it could just be a blip and maybe the chemo can wait until after the hols, after Sam has settled into reception at school and after the kids are just that couple of years older. But if not, we’ll deal with it.

The consultant also talked about an auto transplant which scared the living daylights out of me. Before he hadn’t seemed to want to talk about STC’s at all, and now he was discussing the sibling transplant that has a 25% mortality rate attached to it!!! But I’m not prepared to go there yet…certainly not till we know for definite that chemo is a neccessity and even then, I think it would be my last option.

Funny, I’m writing this in a sort of state of static. None of it really seems real. I seem to be making everyone else feel better about what is happening to me. In wierd way, I think it is how I like it…to be in control. I even feel more in control than N. That is absolutely unheard of. My rock. But I quite like the opportunity of repaying the favour for once in the last year….in fact once in the last number of years!

To those of you who have given words of advice and help in the last 12 hours, thank you so so very much….it makes it so much easier knowing that people are there for us…..we are so lucky to have the loveliest families around, the bestest of friends, and the nicest of acquaintances. And I’d thank each and every one of you for your kind words and messages of support.

Hopefully this will come to nothing and I’ll feel like a fraud. But if not, at least I know that we are surrounded by people who love us. And that WILL get us through this absolute bastard of a disease. (sorry again mum and dad!!)

xxx

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About Deb Gascoyne

I am wife of one, mother of two and a person in my own right :-) I have used my diagnosis of myeloma to allow me to focus on what I CAN achieve and not what I can't. My blog is a way of me spilling out....it is for me more than you I'm afraid. But if it helps you along the way, that is an absolute bonus for me :-)
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One Response to >Bollocksy bollocks (sorry mum and dad!)

  1. Sandy says:

    >A wrenching time, to be sure… and frustrating when time itself can have the appearance of being foreshortened by one decision or another. I intend that your team, with your input, makes the right decisions to allay fears and provide the best treatment for your long-term health.

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