Dear Jean,
I am so sorry to hear that Frank has been suffering such pain, and that you have had the worry of seeing him go through it, there is nothing worse than seeing your partner struggle with awful pain and not be able to help. I hope he is feeling more comfortable now and has some good pain relief to fall back on if he needs it. One slight word of warning, when Steve was using codeine for painrelief when his back was giving him grief he ended up with the most awful constipation, which really exacerbated his discomfort. We tried to adapt his diet to help but in the end he found movicol the most helpful. Being less able to move about down to the pain did not help matters either.
I do hope that both of you are feeling better and you can really enjoy Christmas with all your family, i know they will be with you very soon,
Much love Mari xx
Dear Keith,
Sorry to hear you are suffering with such a nasty infection. As I write this Steve and I are both huddled up in the sofa in front of the fire with exactly the same symptoms as you describe. he has been ill since this time last week and is having some trouble shaking it off, as you say I sure that is down to his compromised immune system. However I am normally fairly fit and its hit me hard as well. I am not sure if it related to the flu jabs for us as Steve had his a couple of weeks before me about a month ago. I thinkl there are some nasty bugs going the rounds and I agree they are probably viral. As a teacher i have noticed several students being away from school and i have done the usual thing of just getting to the end of term and then succumbing!
I hope everyone feels better soon and is able to fully enjoy the festive season,
Love Mari xx
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 very nasty cough and is feeling pretty low generally. He suffered with a lot of anxiety and fatigue with the CDT and i think he is dreading this next phase of the treatment. I think it is also hitting home that with the failure of his SCT, his time here has become shorter. He is worried about being able to work and how we will manage financially, and worst of all he is planning for the future. We both know we need to find a way to live with this without it breathing down our necks every day. All you brave people out there do this all the time and give us such a great example to follow. I really value being able to come to this site to share how I am feeling and to draw from your strength.
Thank you so much,
Love Mari xx
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, bloods are looking good. I dont know if this is an avenue you could investigate with your consultant? Our friend was being treated at Kings College in London,
Much love,
Mari xx
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 over the years,
Much love, Mari xx
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 age, where has the time gone, I still think I am 17!
Mari xx
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 have quite an effect on eyes. Everything has setled down now and his eyes are fine. I dont remember there being anything about eye sight problems on the information sheets we got from the hospital with the CDT drugs.
All the best,
Mari
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 I love it.
Keep feeling better and enjoy your knitting.
Love Mari xxx
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 and paralysis. He underwent emergency surgery and was told it would take him 12 to 18 months to walk again. He did get very low at times, and I think the CDT did not help, possibly the combination of the dex and thalidomide. His specialist nurse referred him to a specialist oncology counsellor and he found this hugely helpful and it brought back his usual positivity. To cut a long story short, he had his op in Jan 2010, followed by CDT and SCT in September 2010. He worked hard and he can now walk pretty well although he still has difficulty with hills, both up and down, and climbing stairs, and he can't run, but I have only ever seen him run between cricket stumps anyway!He found hydrotherapy very useful and spent a lot of time walking arund an round the pool to strenthen his legs. However he finds cycling and swimming much easier and he has regained his fitness this way. He was told he had complete remission following the CDT and went back to work in Jan 2011, full time in February. We have now had a year of normality, he has been very well and even cycled the London to Brighton in June. We had a great few days in Dorset this October, walking the coastal path. He had a great deal of neuropathy after his op, from his waist down, however this has improved steadily over the past two years and he now says he has about 95% of his feeling back with jut a little tingling in his feet, but this is still improving, even after all this time. I can understand your fears over the SCT, it would scare the living daylights out of me. However it is so worth it when it can give you your quality of life back, as I know it has for Steve and for so many others, many of whom post on here. Please ask if there is anything we can help you with. Stay strong and positive and I am sure you will see the light at the end of the tunnel.
With love and best wishes for the future, Mari and Steve
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 from so many of you on here. We are off to Bournemouth next week, half term, to see our daughter who is training as a nurse down there, so looking forward to some nice beach walks and lunches. We dont mind if its cold and bright, we dont even mind if its rainy, we will just wrap up warm and shout at the wind and the sea. My mind has been somewhat distracted by a very dear friend, who has supported us hugely while Steve was ill. She just had a recall from a routine mammogram, where they found something suspicious. Its our turn to support her and her partner now. It feels good to be able to return the favour, even though I would prefer to do it in some different circumstances.
I hope you are able to enjoy this lovely weather we are having, but as I type I realise it might be a north/south divide thing and some of you are being a bit less fortunate, whatever you get keep well and happy,
Love Mari xxxx
