Jan

That’s the way to go!!! No regrets enjoy what you have and never give up hope.

The fact is no one knows what lies in the future,just enjoy and never give up hope,it will take people a long way,and every day is a bonus. Love to you all.

Hi Kaye

It was my husband who died,and it was a long slow death,so when you are not expecting it,it’s harder,grieve hits you very quickly and brings out all sought of emotions.

It is very hard for anyone to speculate what went wrong concerning your mum,if you write or ask to see her consultant I am sure he would explain why it was not picked up…[Read more]

Hi Kaye

I am so sorry for your families loss and for the way the Myeloma progressed without being spotted,I personally think people should learn all they can,and not have this blind faith in doctors,at the end of the day,they are just trained people,and family should ask questions,even if it’s only for your peace of mind.

When people are…[Read more]

Occupations have been talked about concerning Myeloma,

If you think about it chemicals exist in basic materials for every day use,for example wrapping on food,which is put into a microwave !!,

Jobs that you have done in your life ,Farmers service Men,anyone who came into contact with Chemicals,I think why there is no direct research into this is…[Read more]

Hi Jan

How are things,!!! I do not post so much now but look in to see how everyone is doing,and looking at your post I thought you needed some surpport at this stage you are at!!!!

The doctors are telling you to prepare yourselfs, and it’s not a bad way to go,because if this does happen at least it will not be such a shock as last time,and…[Read more]

I’m also sorry to hear you dad has lost his battle against MM. I am glad you were able to be with him right near the end. I do hope his funeral will be a celebration of his life.

Love Mavis x

Done. Good lunch! Mavis

Hi Brian,
I,ve been smouldering for 6 years but am awaiting my recent bloods results which may change my status. Bisphosphonates have been mentioned as the next step even if i have not progressed.
Kp s thread on a confusing journey is well worth looking up .Martin has had a pet scan which I suspect is the best test to reassure you are a…[Read more]

Hi all

My husband Frank was diagnosed with smouldering myeloma in September 2006. He had all the usual. BMB, scans etc. the only treatment he had was Zometa, bone strengthening infusions. Last year in April my husband was turning 70. Although his blood results were good and felt ok his consultant decided to do a SCT. He went through this in…[Read more]

Done 🙂

Hi Tom

You mention the pain is in the left rib as before could it not be a weak spot that’s now susceptible to all kinds of everyday things that we do without thinking especially when we feel better, it’s normal to get the jitters when pain comes especially nerve pain that can be a bitch my advise would be get it checked out if its worrying you…[Read more]

Hello,

Everyone is different on their MM journey but the 100 day assessment is not necessarily the best response you will get from your SCT. My husband Phil was diagnosed with a PP level of 32. After 6 cycles of velcade-dex-dox on the PADIMAC trial his pp was down to 5. At the 100 day assessment after a SCT they had dropped to 3. They…[Read more]

Jeff Frank takes the tablets twice a day and they are 75mg. He had horrendous pain from and after the shingles. He said he felt like a gorilla was crushing every bone in his body. Once he started the tablets he felt a lot better but still gets some pain but not as bad as what it was. Consultant said months ago he could have this pain for some time…[Read more]

Jeff not sure if this is related. My husband was prescribed Pregabalin for pain after a bout of shingles. His consultant told him not to stop them unless he discussed it with her. She said he would have to be weaned off them. He got up yesterday and felt terrible (he’s been feeling good for some time). He said he was feeling so weird and no…[Read more]

Dear Eve, having been away thought I’d pop in and see how everyone’s doing?
And was saddened to read of slims passing, me and kev send you our heartfelt condolences
And hope yesterday (the 9th) was everything you wanted it to be a celebration of slims life.

Thinking of you eve love liz & kev xx

Hello Everyone,well it’s 6am,and today I am coming to the end of a journey!

Last day to make sure every thing goes right,visited Slim yesterday,and took masses of Sunflowers to line his coffin,if you have followed this journey you will know how much we enjoyed France and the fields of sunflowers,they represent a big part of our lives together,all…[Read more]

Thanks Peter. Macmillan were my first port of call, and they have given standard advice about my rights under the DDA and I am obviously going through the usual channels via my work. The support centre in my hospital is very good, but it was specifically myeloma work related issues I was interested in. I believe, given my age, that it should be…[Read more]

Hi Gill

Reading your posting,you could have been talking about Slim, Stephen and Slim must have come out of the same mould. Lol

One of the people from the past described Slim as a gently giant,that was her memory as a little girl.
I had to stop and think about the way she saw him. The last four years took there toll as he fought to stay alive,…[Read more]