This is a very difficult question to answer, if you look at the research papers some of the people at the fore front are in the London hospitals but that is not to negate some of the wonderful experiences that Dai and others have had in regional hospitals.

Prof Schey ( pronounced Sky) is Chair of UKMyloma Foundation, works at Kings. My husband…[Read more]

Lovely Dai, made me weep right here at my desk, better pull myself together as I have thirty 13 yr old boys waiting for me in fiteen minutes time!

Beautiful words but I am very glad you are not going just yet,we still need you a while yet,

Mari

Dda iawn Dai, absolutely delightful news, you are obviously one of a growing breed of Velcade ninjas!

Keep up the good work,

Mari x

Phew, I am so chuffed for you, all we need now is for them to sort out your pain, and Gaye's too. Surely in this day and age no one should suffer pain like this without them being able to do something about it.

On the housework front, remeber what Quentin Crisp said, after the first two years it does not get any worse! It works for me.

Look…[Read more]

Oh Tina, I am so sorry to hear that you have lost Patrick. You have my deepest condolences and I will be thinking of you so much. I hope you can remember Patrick in all the good times before this awful disease took him,

With much love, Mari xx

Dear Kathleen,

You are perfectly normal. My husband had his SCT in September 2010 and has made the most amazing recovery. I have to pinch myself when i think about how poorly he was this time year. However I was weeping at the drop of a hat, and fearing for him all the time, watching him like a hawk and looking for any possible symptoms or…[Read more]

Good Luck Dai, I have followed you particularly as you seemed to be just ahead of us in your journey with myeloma. I will be thinking of you are you start on the next stage.

I am sorry but i m with Janet, we are desparate for rain down here in the South East,

Love Mari x

Dear Bridget,

Have just seen this and I am so sorry you are having pain. However I am with Dai and I really hope you end up feeling silly!

I am thinking about you and hope they can sort things out soon for you,

Love Mari xx

Dear Gill,

I find they are very good at Kings, and will give you a printout of the blood work if you ask for it. We also get a copy of the letter from Dr S ( now prof :)) and that usually has pp readins in it

Mari x

Hello David,

Yes it was 17 the week before he had his Stem Cell Harvest. We were told that the myeloma cells do not survive the feezing and defrosting process so any included in the harvest would not have gone back in.

It was pretty scary that they came back so quickly between CTD and SCT tho

Mari

Dear Jean

I hope you have a great holiday, enjoy the break and I hope Frank is not in too much pain. We has a great holiday in France when Steve's ribs were bad and had a good time despite it,

Look after yourself

Mari xxx

HI Jet,

Your post made me smile. I am not a cyclist but my husband is. He had his SCT in Sept and the last two weekends he has cycled 14 miles. He is training for the London to Brighton bike ride in June. Just over a year ago he could not walk and still struggles walking uphill yet on a bike he flies again. It was great seeing him getting his…[Read more]

Dear Dai,

I am so sorry to hear your news, dont know what else to say, except my love goes out to you and your wife, and I hope the next phase of your treatment goes well,

Mari

Dear Jean,

This sounds very much like the pain Steve had in the summer before he was officially diagnosed. Sharp pains in the side of his chest/ribs. He thought he had a pulled muscle. It was very sharp but eased in a few days, and happened on either side of his body two or three times. This was in June/July, by November he was in severe pain…[Read more]

Dear Amanda,

I am glad you have got your counselling sorted out. My husband Steve was 53 when he was diagnosed. We both had counselling from specialist oncology counsellors and they were brilliant. We no longer see them but still have a line open to them if we need it again. I hope you have as good an experience as we did.

I hope your mum is…[Read more]

Dear Gill,

I think as Debs says its very individual. Steve was diagnosed with smouldering myeloma in 2004 with PP levels of about 7. These increased slowly until he ended up with a tumour on his spine in autumn 2009. He was told they would not start treatment unless his PP levels reached 30. However they were 24 in Novemeber 2009 and they…[Read more]

Hello everyone, this is a lovely idea Min, its been lovely to see you all introduce yourselves. I have not been here for a long time but its half term next week and i have some breathing space. Stephen, my husband, has MM and we live in Tunbridge Wells. We have two children in their 20's and a rather elderly cat. Steve was diagnosed in 2004 with…[Read more]

Hello Sarah and Gordon,

Delighted to hear that all is going so well, brilliant news. And I agree with you about Dr S's assistant, he really is lovely and very straight forward. Hope things just keep on getting better for you both,

Love Mari x

Great to hear you are home, I am sure you will feel so glad to be starting to get back to normal that your recovery will really take off!

All the best,

Mari xx