Dear Rebecca

I’m a serial worrier – about everything – and your comments are really positive – thank you!

Dear Mavis

Thank you for your reply to my post and for your good wishes, it means a lot to share that thank you. Nicki

UCLH seems such a good hospital with a very good record for SCTs, so I hope all is going well for you. Kevin was admitted to the ward there in November last year whilst he was ill with pneumonia as at that time it was thought he had Waldenstroms Macroglobulinaemia and the national expert in that, Dr D’Sa, practices from there. It is a lovely…[Read more]

Thanks you so much for your good wishes, it really does mean a lot, thank you. Nicki

Thank you for your good wishes – they do mean a lot even though of course we don’t know each other at all really!

As I have just posted in another reply, at 66, diabetic and not especially fit and with only one kidney, Kevin was perhaps not an ideal candidate for SCT but all tests showed he could get through it, and indeed he has and life is…[Read more]

Thank you for your good wishes Rebecca. I hope Kevin’s progress is hope for others who, like him, were not particularly young or fit at the time of SCT but who have got through the process well with virtually no side effects after just a  month.

We are lucky in that we both work largely at home ( we changed our lives this way after Kevin had…[Read more]

It’s interesting how different hospitals have slightly different protocols but if your husband is being treated at the JR in Oxford I’m sure he is in very safe hands as it has an excellent centre. We have been thinking of moving at some point nearer to relatives and the Oxford area would be first choice as it is near family and friends and because…[Read more]

Ouch! I can imagine Carol how it felt but when you got the results I imagine you felt it was worth it. You do wonder how much individual technique affects discomfort and duration of the biopsy. Kevin’s initial one ( to confirm diagnosis) took about 45 minutes in all I think and he said afterwards ‘never again!’ The second one he had in a…[Read more]

Hi

As we live so far (50 miles) from the cancer centre where Kevin has his treatment we were advised that Kevin may have to stay in for a few days longer post SCT because of the risks of being so far away, so we were expecting a three week stay in the area although Kevin was determined to get home as soon as possible!

From my understanding a…[Read more]

Hi Carol

I’m pleased to know all is going well for you too! I hope the blood results are looking good and you must be getting v excited with your forthcoming move to Australia. One of the pluses I guess that comes from having ‘cancers’ is that you can appreciate the good things in life more and become rather good at being hedonistic and then tend…[Read more]

I am sure you will find support on this site from both those with myeloma and also from their families who taking on the role of being carers unwittingly. Of course you are now in shock – it is a disease few are aware of and the ‘cancer’ label is frightening. The more you get to understand about it ( and hopefully you will find what you need, when…[Read more]

Dear Simon

I think we all inevitably have some anxiety about the unknown but I think you will find a lot of  posts on this site about people’s different experiences of SCT. The more informed you are, particularly about preparing practically,  hopefully that will allay your concerns to some extent. Hopefully you also have a specialist nurse or t…[Read more]

Thank you  Carol and apologies I haven’t had an opportunity to reply until now. I think everything you said has been very valid and helpful and so far Kevin’s experience has been similar to yours I think except his mouth has been fine except for a little thrush.

Re your analogy with childbirth I think Kevin now has a lot of empathy for expectant…[Read more]

Hi

I wonder if you have accessed the US based Myeloma Beacon website, I like the depth of information on trials and research, the weekly polls conducted through the forum and the general layout which I think is easy to navigate. However as it is US based,  standard treatment regimes are not the same as in the UK and different terminology and…[Read more]

That is brilliant news, cause to celebrate!

Nicki

Hi Ian

Kevin got cramps similar to yours whilst on CDT, especially in the last two cycles but it completely disappeared when he finished treatment. We were told it was a slight bit of pn but Kevin has had a few problems in the past with ‘trigger finger’ and from using a  keyboard a  lot so we thought initially this was coming back.

I really l…[Read more]