PS and I forgot to say more generally, phone Maggie/Ellen at Myeloma UK who have the full picture on treatment etc – there will I’m sure be various good treatment options.

Hi Molly,

Welcome to the site. Sorry you’ve had such a ride of it so far, but I think you’ll have a very positive experience with the NHS and myeloma. Obviously I can’t speak for everyone but in general I get the impression people feel we get excellent care – I do.

On financial aspects, get in touch with Macmillan – you can book a call with a…[Read more]

Haha, stop telling people about my warts David? 😉 And actually I’ve just remembered you may have an SA connection, hence the vasbyte?

A family tree sounds a great idea! I meanwhile am meant to be fast asleep so will keep this very short by my usual long standards – thanks for clarifying that it is still worth doing as long as I take those two…[Read more]

Thanks so much David for taking the time to reply.

It’s very helpful to know about the first point, contacting your doctor, and that if anything (even irrelevant) is not declared the whole thing may be void. I had not fully understood – but had worried about that. I remember reading about someone whose life insurance policy would not pay out as…[Read more]

Hi Vicki and Colin and everyone,

It’s a real pain, isn’t it? Here’s my experience with AllClear, for what it’s worth: I got an annual multi-trip Europe policy with them last May. It cost me something like £250-350 but I can’t remember exactly – didn’t seem too horrific for a full year, bearing in mind the myeloma. At this point I was in…[Read more]

Hi Jade,
I didn’t have an SCT just 4 cycles then the harvest and may do SCT in future – but I wanted to write and share thoughts just as I know what it’s like when you’re trying to plan ahead and figure it all out date-wise. I don’t know if you’ve factored this all in already but timing tends to slip: e.g. sometimes they have to delay a cycle by a…[Read more]

Hi Tom,
Sorry to hear that… But 4 years is a good innings and just think of the nice guy I meet sometimes in clinic: he got a 7 year remission and then a 10 year remission next time around. So maybe you’ll beat 4 next time – I dare you to!
Good luck with the BMB,
Helen

Welcome to Nick and all those of you I haven’t yet ‘met’ before!
Sorry you’re joining us but you’re not alone – there are a whole bunch of us here living this weird existence, although some like me only write from time to time. I had treatment last year and have enjoyed a good year this year in remission.
Helen

Hi Maureen,

It was great to read that Ian got home, even if a little later than planned. I hope he’s doing well now and even if the weather isn’t so favourable you’re finding plenty of things indoors to keep you occupied!!

take care and enjoy the run up to Christmas,

Helen

Dear all, and especially Dai’s family,

I’m very late to add my condolences. I think in some way I didn’t really want to believe it was true, and like others have said it was such a shock when I read the sad news: Dai was such an institution on here. Since that’s how it came across even in messages on a forum and never having met him, I can only…[Read more]

Dear Sue,

I never met Keith but I read his posts on the forum and he was so helpful in passing on his experiences and advice to other new myeloma patients starting out on this tough journey. He was clearly a very brave and lovely man, and you must miss him. I hope you are surrounded by love and able to take the time you need to grieve, and rest…[Read more]

Thanks Eve!
Yes it's nice to have something to look forward to and important still to have those days.
I'm actually reassured after yesterday. I haven't seen doctors or had results yet but the guy doing the test explained it and showed me the pictures and said it looked to him like my heart just has an extra sticky-out-bit, not a clot.
I was…[Read more]

Hi Andy,

It's great to read this news! I always notice that you worry about giving 'bad news' for newbies etc but looking in from the outside I always think your story is really encouraging, a story of hope. If at first you don't succeed, try, try and try again! I've hesitated to say that before because I'm not in the same boat and I realise it…[Read more]

Hiya,
I'm on pamidronate which is what they use at my hospital. I read some research about how zometa has been found to have good results in terms of increased remission etc, so I asked about why I'm not on that. At my hospital it's currently the policy to use P not Z but they're very similar. The research found that Z is better than another…[Read more]

Hi Maureen,

Good luck with the next cycle and the results, and getting rid of that bed sore! Hang on in there.

Helen

Hi all,

I didn't have SCT but lost my hair from the induction chemo.

It's grown back a fairly similar colour with a bit more grey possibly (I still have v few). And yes it came back quite curly which it wasn't before. Well, sort of wavy/curly – curly when out of the shower. Lots of it but very soft fine hairs. And yes maybe a bit duller…[Read more]

Hi Babs

Thanks loads, that's really helpful to know the £6000 / £16000 figures, I had no idea what kind of level they would ignore. Not something I'll have to worry about for a good while, hopefully, but like you say there are always these choices about things like mortgage overpayments vs keeping it in the bank, so it's important to try to b…[Read more]

Thanks Helen and Tom,

That makes lots of sense to me and is roughly what I'm doing – work and spend 🙂 as long as I can, finding out what I can sensibly about the future but meanwhile making sure I enjoy today. I just had a great long weekend break with a friend in Liverpool actually, and am looking forward to getting across to France/Italy…[Read more]

Hi Tom,

You really are a total hero for working those hours! I am not a morning person and have often been known to turn up late for 10am team meetings, even before MM. I hope you do consider taking some of your pension early or going part-time, even though the benefits system is so ill-suited to the situation you're in. You deserve a rest!!…[Read more]