Hello Jo, Jean, Vicky, Ali
I apologise for the bulk nature of this reply, but thank you so much for your cheery replies:-)

I got the parking space back!….. And a little note from personnel asking how I was!

Jo are you managing your new treatment well or is it very exhausting?
And Jean I hope Frank continues to improve? How is the…[Read more]

Hi Sue
I've never had a PET or MRI scan only CT, so MRI next week will be a first for me with mm, though I had a brain one as a research volunteer a few years ago…. And yes my brain is there,! I find the Revlimid tiring and it has probably worsened the peripheral neuropathy I had before diagnosis but not impossibly. I find it upsets my gut…[Read more]

Hi Ian

oh bug..er, sorry to hear that velcade hasn't worked for you but at least 70 isn't too high (at my last test my Kappas were 77). I'll be on Revlimid when I need to start but hopefully that wont be for a while. Definitely try and get some time off before you start your next treatment as your light chains aren't high enough or rising…[Read more]

Hi Terry

12 months remission is pretty crap, I had about 15 months and am now relapsing but don't need any treatment. Like you I was angry, devastated and depressed and very gloomy about the future. I have come to terms with it now and feel a little calmer.

You might want to check out my blog post about relapsing when I first found out. I…[Read more]

Hi Helen

We have very similar seats on the rollercoaster! I think the news is mostly good but its all relative to what stage you are at. The main thing is like me you are feeling well. The neutrophils probably due to the revlimid so maybe the week off will sort that out.

I'll be having a light chain test on Friday so back in the land of…[Read more]

Hi Terry
I have just posted along similar lines and am in almost the same place as yourself. I still work, a huge part of my identity is through what I do, and I just love my job. It is interesting and stressful, valuable and sometimes exciting and humbling too. Without my work what will I do? I like the banter, i get a great deal of personal…[Read more]

Hi Mary
My husband cornered the antibiotic wipe market, cleaned everything i was ever likely to touch and stopped all visitors and tried to cook. He managed 3 days cooking then self preservation stepped in and it was better to do it myself. I only ate very bland stuff for months and still don't eat as i used to. We changed beds and towels every…[Read more]

Hi I agree with Eva here, the drug arsenal for mm is still small so if a drug works and you can tolerate the side effects it's worth persisting and getting as much mileage out of it for as long as possible, then using it again in the future if you can. I have now spent the last 2 years on Revlimid with a few months off over transplant but each…[Read more]

Dear Sue
That is just an awful short time for you, I can only sympathise and hope all goes well on this next lot of treatment. It's such a tough road. Keep us posted on how you are getting on with it. I've been on the Revlimid for18 months now and had annoying but low grade side effects only.
Love Helen

Perhaps all we need to get better is more sunshine and beer! Love Helen

Dear Eve
It's really hard isn't it? And it feels unfair when you look and feel well! Make sure you have lots of anti midge stuff for Scotland, but it's always very pretty.
Love Helen

Well Tom, am envisaging you in the onesie:-P with a/bs and sorry face:-( hope you better soon
Love Helen

Oh how lovely, I hope you get them sorted, and next year I expect you to post a picture
Love Helen

Dear Vikki
I don't know what is normal and not normal still! I took nigh on a year to recover enough after sct to go back to work! So maybe Colin is trying too hard, who knows . Like Ali's mum, we have to do what we feel is best on that day! I have good days still, then I have really bad days where I struggle to get in to work, need lots of…[Read more]

Hi Jean
It's good to know he's doing ok, I still can't take wine or curry, my sense of taste is quite weird still, but it means I'm still very thin! Silver lining:-) actually it more likely means I drank too much before! As for the bmb… Results next week, but I'm fine really, I'm hoping I have a slow return to more treatment and fit in a few…[Read more]

Hi Maria,
What would be the alternative to a transplant at your age? It is the gold standard treatment for younger patients and even though my remission lasted just 15 months there are others who get 5 or even 10 years and no way of telling whether you're one of then. Although I didn't have a long remission I recovered fairly quickly from…[Read more]

Hi Jacquie
I finished my chemo on the 6th June and was booked for harvest on the 18-19th July. I waited from the 20th July when harvest completed to 15th August for HDT and SCT . Our hospital doesn't book HDT until successful harvest is completed so it is first available space after that….. About 4 weeks in all as they like you to bet fit as…[Read more]

Hi David
Re bulbs, did you tell her what it was supposed to say? Or is that still a romantic secret?

How is Frank today Jean?
Love Helen

Hi David
I have an old style passport which runs out on 29th April. We went to lanzarote 2 weeks ago. It was fine for Europe but lots of officials pointed its date to me! Had I been going to America I would have needed 6 months on it they said.
Hope that helps
Love Helen