Dear Carol

I am so very sorry for your loss of your husband Brian. It seems so very hard that you had such a short time after his disgnosis. I cannot tell you that your pain will ever go, I have no experience of such grief, but I hope that day by day it will decline and you will be able to remember Brian as he was in the good times before this…[Read more]

Dear Eva and Sue,

It may help but I remember a conversation with Steve's consultant during his SCT. The bone marrow is knocked out by the melphalan but can regenerate iself without a transplant, but slowly. They give the harvested cells back to improve this regeneration in the process of grafting. I think that for some people the process can…[Read more]

I am chuffed to bits to hear your news Dai, but so sorry to know you have had such a tough time over the last few weeks. I admire your strength and positive outlook. I wish you a very happy and long lasting relationship with Rev and Dex,

My love to both you and Janet,

Mari x

Dear Gail,

You poor thing, I know this must be very hard to see the man you love changing in such a way. I saw the same thing with my husband. He became very anxious and depressed when he was undergoing his CDT. Partly it was to do with the treatment and partly the shock of diagnosis and the complete change in his life. He was a very active…[Read more]

Hello Tina,

It seems that a reaction to allopurinol is actually rather common. My husband was fine when he took it with CDT but had a dreadful reaction when he had it with his SCT. He went red then purple from head to foot, and then lost an entire layer of skin, all over, and yes I mean ALL over. Poor man, he felt dreadful. Luckily they will…[Read more]

Excellent news Tina, keep on going and I hope you see the right kind of progression next time around,

Love Mari xx

Dai, once again your strength, commitment and bravery have inspired me. You hang in there, fight your corner and keep this disease on the run. I am certain that a positive attitude can play an active part in the way the treatment works,

much love to you both, Mari xx

PS where can I find 'The Secret', I would like to watch it

Dear Eve,

I am glad things are going to plan for you now. it must be tough for all the family after what you have been through lately. I am glad you are able to stay with your daughter, it makes the journey much shorter for you. Steve has got the dates for his workup in mid june, then stem cell harvest in mid July, followed by the transplant in…[Read more]

Good news Andy, I hope the nasty BMB is better than you fear, the idea sets my teeth on edge but hopefully you will get the results you are hoping for,

Much love,

Mari xx

Dear Gill,

I am so sorry to hear your news. I know you and Stephen must be feeling desparate. Is there really nothing else they can try? Any trials, bendamustine or even going back to some of the previous treatments? It must be hard for you because if he wont let you go to the oncologist with him then you will not have had a chance to ask…[Read more]

Yes Gill I agree, it feels so strange to be going back to all that again and I have to admit to being more than a little nervous, especially second time around.

It's so good to see you posting again, I have missed seeing your presence on the board. I guess this means you are back from France. How are you both? I hope Stephen is feeling well and…[Read more]

Hi everyone,

I did try to quiz Prof Schey about the different protocol but he was not letting on. Steve got the impression that it is an old protocol that they have realised works rather well. We will let you know as soon as we find out but we dont expect the transplant to take place until late summer early autumn. Steve is having one more…[Read more]

Dear Sarah and Henry,

I am so glad to hear that Henry is feeling so much better. I remember how wonderful it feels to start getting some normality back into your life. I hope that life beginnings to feel much much more normal for you both and Henry achieves a lovely long remission,

Lots of Love,

Mari xx

So sorry to hear you have been poorly Dai, but glad to hear you are on the mend, look after yourself and get back to normal soon,

love Mari x

Dear David,

Steve and I left Kent yesterday morning in pouring rain to arrive in Bournemouth at lunchtime to bright sunshine and temperatures 5 or 6 degrees higher. We had a lovely lunch with our daughter and walked on the cliffs of Hengistbury Head, it was glorious! Carys, our daughter, who is nursing down there, tells me Bournemouth is always…[Read more]

Thank you Wendy xx

Dear Susan

I was really shocked and saddened to hear that Sharon had lost her battle with this awful disease. I remember her posting on here often. My thoughts are with you and her family and I send my condolences for this very sad loss,

Mari

Hello Eva,

Steve's consultant is very clued up about the current research and I got the impression that it very much informs his clinical decisions. He was talking about the statistical data supporting various regimes but he did not go into any detail about what the protocol is. Steve got the impression that he was talking about going back to…[Read more]