Thank you Dusk and Fiona – I’d never heard of GCSF but I’ve looked it up and it’s useful to know about.

I’m on partial remission, still taking lenalidomide and a low dose of steroids. My last blood test showed that my neutrophils were low, and so I’ve had a couple of weeks ‘holiday’ from the beastly drugs. I have another blood test next week. My consultant hasn’t really explained what this implies, though we’ve looked it up and seen that it’s made…[Read more]

It seems very unkind of your consultant to say that most people ‘sail’ through treatment. Also not true – people vary hugely in their reactions. But you will find that you get used to the complicated drug regime and better able to cope with it.
It sounds as though you need support which you aren’t getting. Have you got a Maggie’s Centre…[Read more]

Blood tests are the first port of call, and often the way people find out that they have myeloma in the first place. They indicate what the paraprotein levels are. – the bad guys. As far as I can tell, up to a pp level of 30, it’s okay. Warning bells ring beyond 30. They also give indications of kidney damage and general functioning. Xrays show if…[Read more]

If you’re nervous about the test, then get them to give you any pain relief that’s going – they shouldn’t make you suffer even in anticipation. I’ve had four so far – they aren’t pleasant, but they’re actually not too bad, and the nurse who gave them to me was very good, talking me through all the sensations.
The only time it was really…[Read more]

Signed, and posted on Facebook and twitter

Apparantly I did have a bleed in the eye, which is caused by pressure and is a result of mm medication, but it seems to have cleared up spontaneously. But my main problem is a macular hole ( a tear in the retina, which they say isn’t caused by mm – do I believe them? Anyway it entails an operation, after which I have to lie on my stomach for a…[Read more]

Dear Martin,
I’m 70, and was diagnosed with mm last year. I thought I’d got away without back pain, but in March what felt like a grumbling muscle suddenly got painful, and they decided I had three stress fractures in the lower spine. I found it quite hard to get notice taken of this at first but then attention kicked in, and since then…[Read more]

Thank you for all comments. I see the eye surgeon next week, and I must confess to feeling uneasy. I can cope with the chemo rubbish, but don’t like the thought of someone messing with my eyes! Wish me luck.

Thank you, Michelle and Rebecca. I think I shall sneak into the chemist and find a very gentle temporary colorant shampoo. My hair is very brittle and absorbent at the best of times, so I shan’t need to leave it on very long. Important to try and look good while all this rubbish is going on!

Do they send the results to your GP? You might be able to sidestep the process that way if they do. My consultant often forgets to send me the results.

Thank you for all your helpful comments – I went to my GP who put me on strong painkillers so at present I’m managing the condition, though I guess I can’t stay on them for very long. I had an x ray a couple of weeks ago, so I reckon I’m fairly up to date, and I’m about to have zometa. I’ll see how al this goes, and then start making a fuss if…[Read more]

Thank you Andy. That was a very helpful and reassuring post

Please can you tell us a little more about what these drugs are that we’re not being allowed access to? I’m currently in a somewhat stressful limbo of knowing that I’ll have to start chemo very soon, but with no idea of how it’s going to affect me, and precisely what the drugs involved will be. But I do need to feel that my haematologist is going…[Read more]

Dusk – my reply to your post came out sounding crosser than I meant it to. I wasn’t trying to denigrate your experiences of treatment – which have obviously been poor, just to say that mine, so far, have been nothing but good. And that I feel that the only way to put up with this nasty condition is to look on whatever positive side you can find. I…[Read more]

I haven’t posted very often, but I’ve found this forum extremely helpful – thank you everyone. I intend to have a bloody good Christmas, and I hope you all do too.