Hello all,

Thank you all so much for all the supportive messages of hope. We saw the consultant yesterday and we are waiting for the letter to tell us when the velcade will start, proabably next week I assume, surely before Christmas. We both feel we want to get on with it now as the myeloma is rampaging again. Steve has got another cold with a…[Read more]

Dear Sue and Michael,

So sorry to hear your news,it must be a real knock back for you. One of our friends in the local support group had the same problem with bendamustine, he was very poorly. Since then he has been having low dose of melphalan and this has helped him hugely. He had his last treatment in September and has been well since then,…[Read more]

Dear Eve,

I am delighted to hear your good news, you and Slim certainly deserve it after such a difficult time. I wish you and your family a wonderful Christmas and some time to put this horrid disease behind for a while. I know you can't wait to get out in your camper van and off on your travels as soon as you can,

Much love, Mari xx

Dear Gina and Linda,

My sincere condolences on the loss of your lovely mum. I am glad you were able to go and see your mum today. I remember doing the same when i lost my mum and it has given me a great deal of comfort since then, I remember it with warmth, not sadness. I hope you can remember your mum in all the good times you all had together…[Read more]

Hello everyone, this is a nice idea, its good to know where you all live. Steve and I also live in Kent, Tunbridge Wells, but no we are not disgusted! Steve is treated at Pembury Hospital here in TW and at Kings College Hospital, under Professor Schey. Steve is 55 and I am 54, tomorrow. It still comes as a surprise to me that I have reached this…[Read more]

Hi Dave,

hope things are going well for you and you are still getting on OK with th CDT. I was thinking about what you said abut having eye problems. I had forgotten about it but Steve did have problems with his eyes. He kept thinking the prescription on his glasses was wrong and kept going back to the optician. He was told that anaethestic can…[Read more]

Dear Bridget,

Like Gill, I am delighted that you have your 'mojo' back. That must mean you are feeling better. We are lucky enough to have an original'Bridget'. You made a lovely hat for Stephen this time last year when he had his SCT. His hair has all grown back now but I have your soft snuggly hat in my car, I wear it when cold and or wet and…[Read more]

Hi Dave,

I am sorry to hear you have had such a difficult time, but you sound such a determined and positive person I am sure you will fight your way through this and get yourself back to as normal as possible before long. My husband Steve has had a similar experience to yours. He was a little older, 53, when his plasmacytoma caused compression…[Read more]

Dear Gill,

I dont know anything about this treatment, but we have great confidence in the staff at King's and I wish you both well with the treatment and dealing with the dreaded dex. Let's hope it has the great effect of keeping the Beast well and truly at bay,

Much love, Mari xxx

Dear Bridget,

I am so pleased to hear from you and that the treament is going well so far. Long may it continue to go well and have wonderful results for you. Keep well and good luck with all those injections,

Much love, Mari xxx

Dear Eve

I am delighted to hear your news. I hope you were both able to enjoy this sunny Sunday with your a load off your mind,

Love Mari x

Dear Dai,

Like Janet I qualify for a flu jab because i am diabetic so we are both due to have our flu jabs. We have both had pneumonia jabs in the past and I agree with Gill in thinking that they last for ten years, at least,

Mari

HI Eve, and everyone else,

Thank you for your kind words, We are both feeling a bit calmer now. Steve has another appt on 30th Nov when we will see what has happened to the PP levels, we are still hoping its a blip.He does not have any symptoms at the moment, which is a good sign. We will take what comes tho and just keep going, great example…[Read more]

Thank you everyone for your kind words and offers of support in the future. I know the time will surely come when we will need that support. Maybe I did react rather too quickly on Wednesday, it was such a shock as he has been so welland we had such highhopes for the outcome of this SCT. I know that others have been here before us and have come…[Read more]

Dear Julie,

I am so sorry that you have lost your dear mum to this awful disease. My love and sympathy goes out to you all at this time,

Love Mari xx

Dear Ellen,

As a carer who is facing the eventual but certain loss of my partner ( with mm) and as someone who hs witnessed the grief of those who have recently lost their partners I can only say, Yes Please we need somewhere we can talk about grief and loss

Mari

Dear David,

I am sure I remember reading something somwhere that Zometa has been shown to have an active effect in preventing relapse. I cant rememeber exactly what I am afraid. I know Eve is pretty clued up, maybe she will know. Steve mentioned this to his consultant and he, Prof Schey at Kings agreed and swapped Steve from Pamidronate to…[Read more]

DearMin,

I was just reading through some posts and thinking how much I missed reading your posts and hoping you would still come back. I feel totally inadequate when it comes to saying anything that might bring any kind of comfort to you. I am so sorry you are feeling so unhappy, I cannot begin to imagine your grief, but as someone with a very…[Read more]