OK you bunch I award you Honorary membership of the illustrious order of "Night Owls".

The Night Owls were formed in Sri Lanka in 1997. We met in The Eden Hotel bar. Germans, Dutch and British and we seemed to spend most of the night, and I do mean night not evening, in the Bar together – having to be thrown out in the very early hours, in…[Read more]

Good luck with the new treatment Keith and enjoy that holiday, where?

Kindest regards – vasbyte

David

Thanks for the information gang, [i]for warned is for armed [/i]as some bright spark once said. So it looks like my next step should be Velcade, when it comes that is, and I have kicked the ball way way up the pitch Keith 😉

Not that it has anything to do with Relimid but I thought you would all be dying to know that I play a game called…[Read more]

Hello Wendy and Helen

I'd just like to say I found both of your posts quite heartening. You Wendy for doing a 10k run and you Helen for the trip to NZ. Colin and I love to travel so all of that seems miles away for us at the minute. Helen it's great to see that these things might be possible. Wendy also I was so pleased to see that activity is…[Read more]

Hi Jean

Have read your posts and I feel for you…..and know how you feel. These strong willed men eh? It is so hard to know what to do for the best. I worry day in day out and when the treatments are delayed I worry even more. I hope you and hubby get the best treatment whatever that turns out to be. The thing that makes me cross is that…[Read more]

Hi Helen,

Thanks your post has cheered me up! I feel positive most of the time, as does Colin, but he has dipped a bit just recently so I'm looking for all those good news stories like you. We'll keep going,as you do, but sometimes it's hard as you know. Roll on next consultant visit, perhaps mm will have disappeared ha ha!

Vicki

David,

You are an inspiration, keep going, enjoy all you can,remember numbers are only numbers and there to be proved wrong!. Hope the geraniums are doing well 🙂

Vicki x

Helen, thanks very much. It's reassuring and helpful!

Have you had and SCT ? Do you mind me asking how long it took for you to get from the start of the induction therapy to the SCT? I think colin is getting fed up now. He has just completed cycle 7 of dexamethasone,cyclophosphamide and revlimid. We are awaiting results of cycle 6 when we see…[Read more]

Hi Eve, Yes I agree with you about time lines.

At the time of my MM diagnosis, 2009, I was aware that this was considered a terminal illness. My first thoughts were that I must sort things out for my wife, how much time did I have, there seemed to be so much to do! When the Consultant told me not to worry about that in an offhand manner I…[Read more]

Hi Helen,

I have PN and I have had it since my treatment started in 2009. I call it sponge foot because that is how it feels. Most of the time I just ignore it, it does not affect my mobility as far as I can tell. I also get the odd tingle in my hands, in fact I have it as I type right now, but, again, it does not seem to affect my ability…[Read more]

Sponge feet sound like Peripheral Neuropathy, which is what I have, and if so you should definitely tell the Consultant.

The worst thing you can do is ignore Myeloma so you must also inform the Consultant that that is what your mother is trying to do. I know exactly where your Mother is coming from my Mother in Law was made of the same stuff,…[Read more]

Thanks for the info.

I am coming up to my final "sale by Date", original prognosis was max 3 years, and I am feeling fine. I planted my last 60 geraniums, from 360, yesterday and just the normal back ache from bending over otherwise I do not feel I am going to pop my clogs at any time soon:-D In fact I am now going camping down by the…[Read more]

Hi David and anyone else who is listening!,

I was wondering. Colin had a stay in hospital over the bank holiday weekend until Wednesday just gone. Came out Wednesday lunchtime with a load of antibiotics. Looking back he always seems to feel worse at the end of his cycle. Say days 15-21 onwards. This time he finished cycle cycle then 3 days…[Read more]

Hi Ann,

So far so good. I know what you mean about feeling useless!. I too ask Colin all the time if he is ok (and I expect he gets fed up with that too).I find it hard sometimes if Colin is very quiet, mainly because I think he might be worrying or sad. With regard to grumpiness think that might be the combination of dexamethasone and…[Read more]

Hello Jen,

Again sorry your family has been touched by this condition. My partner colin was diagnosed in October 2011 and has had 7 cycles of treatment. When he was diagnosed I read every website I could find and they all scared me to death. They were very depressing. I counsel myself to read this one only and correspond with friends on this…[Read more]

Hi Jean

Hope all is well with you both. See my post to ann. Colin has been in hospital but out now. He picked up a chest infection. Feels really fed up as he is wondering whether he will ever be fit again. Hope the treatment is going well form your hubby.

Vicki 🙂

Hi Ann and all,

Colin did not got to the consultant yesterday……he's been in hospital:-(

What happened was, last Friday (1st) he started to feel a bit unwell. Mind you he'd not really been right for a week. We had some friends over for a jubilee meal and he was not great all through. Saturday the temperature was going up and down and he…[Read more]

Well done Jacqui, Simple isn't it 😀 😀

Amazed you are out of hospital so quick. Just keep the bugs away as Tom says.

Kindest regards – vasbyte

David.

Hi Jane, Welcome. Reading your post you seem to be an old hand :-/ , that is with Myeloma of course.

Kindest regards – vasbyte

David