I am very saddened to hear the news of Dai's passing. I have been coming to this site for over three years and he was a huge part of the Myeloma Community here and meant so much to so many of us here. But I know this was such a small part of Dai's life and he has made a huge mark on this world and leaves a great legacy behind him, in so many ways.
My thoughts tonight and in the coming weeks and months are with janet and his wonderfully close family who I know will draw together now and support each other.
My love and condolences to you all,
Hedd, perfaith hedd,
Mari xxx
Dear John,
I am so desparate;y sorry to hear your news. I remember discussing amyloidosis with you as Stephen was diagnosed at a similar time, it seems to progress so very quickly and take away our loved ones with it's progress. It is 3 months tomorrow since I lost Stephen. I know that terrible pain that you are experiencing. I only hope you are surrounded by loving friends and family who can somehow ease your passage through this time. I have come to the conclusion that there is no way to make it better, we just have to live through it, and very slowly it some how becomes easier, I am still waiting for that. Be kind to yourself, and one day you will be able to remember the good times without too much pain. I am trying so hard still to remember the days before he became ill. I will PM you my email in case it would help you to talk about anything,
Much love, Mari xx
Hi Roz,
It's good to hear that you are doing well. I am amazed to hear it is nearly three years since you lost Michael, it seems no time at all. It is nearly 7 weeks since I lost Steve and I am not sure I am looking forward to Christmas, will need to do something for the sake of the children, and Steve loved Christmas. I am lucky to have some very good friends.
Hi Min, Thank you for your messages on Way Up, I have not really got into it. I am still not sure how it works. I think I need some time to work it out, but my friends have kept me busy and I went back to work full time at the beginning of September. I had been planning to give up so I could spend more time with Steve, but in the end there was no more time to be had with him.
Anyway my love to you both, and as Roz says, stay strong, Mari xx
Hi Maureen,
Yes, Steve had a plasmacytoma at vertebrae T8,9 and 10. He had a laminectomy where the top part of the vertebrae were removed along with the tumour. The tumour had been pressing on his spine and he lost the use of his legs. Learning to walk again was a long gradual process. He was lucky, he managed to walk a few steps, with help, only three days after his operation. They did catch him very quickly after the compression, he had the operation within 48 hours. However he seemed to go backwards and he was not walking as well a week or so later. He had no feeling in his legs and from about his diaphragm downwards. This gradually returned although i think he still had some numbness in his calves and feet. At first he could only walk a few steps and it was very slow. I suppose it took about 12 to 18 months before he could walk anywhere near normally. He found hills, either up or down challenging and he would tire easily. He improved over the months, and he was able to walk long distances.
I do hope that Ian is able to get back to walking to regain some normality,
Love Mari x
hi Scott,
Good luck for your SCT, don't place any expectations on yourself, sleep as much as you can, and before you know it you will be going home.
Steve has had two SCT's in Kings and it is a lovely place, staff are wonderful. If you don't fancy anything from the menu they can (and will) do some special bits and pieces for you in the ward kitchen. Steve discovered this just as he was about to come home the second time!
It gets really rough in the middle, and then, all of a sudden the bloods pick up and you are being sent home. It caught me out both times.
Just a note for Linda, I am not sure where you are visiting from. I used to use the train into Denmark Hill like Eve did, but I caught it in Sevenoaks. It is not a lot of fun but trains are fairly regular. I did drive in from time to time, traffic can be nasty but not too bad at the weekend. parking is easier across the road in the Maudsley Hospital, and a lot cheaper than Kings. Let me know if there is anything else I can do to support Linda while you are in, you will be needing all your energy to get better. Drop me a private message and she can have my email/mobile, whatever helps.
Here's to an easy ride and a long healthy remission for you,
Much love Mari xx
Dear Maureen,
It's a long hard journey, but the nerve supplies do improve and things we would consider miracles do happen.
I think this is a little way down the line for you, but Steve found hydrotherapy a wonderful help and we were grateful that his physios were able to arrange time in a pool for him. The water is so supportive and really helps to strengthen muscles.
I am thinking of you and hoping for a good recovery for Ian. Have a lovely time in Nice and Happy Birthday,
Much love,
Mari xx
Hi Maureen,
I have not been on the forum for a fair while and I had missed that your husband had such a bad time, especially with the spinal compression. This was something that Steve went through when he was first diagnosed. He lost the use of his legs, it was devastating, but I don't need to tell you that.
I don't know how your partner is doing, but it may help to know that Steve has been able to regain his ability to walk, although he is happier swimming or cycling. Sadly he will not be doing any of these any more as his heart is failing, but we have had some very good times, since his operation in January 2010. I hope things will get better for you.
Much love Mari xx
Hi John,
So sorry to hear your news, that certainly does sound scary. I guess it is probably the amyloids that have caused her problems in the intestines. Steve has it in the soft tissue of his mouth and he has terrible ulcers and swollen salivary glands. They come and go and are controlled by mouth washes. It makes eating difficult.
Usually dex and other steroids are prescribed with PPI's ( proton pumps inhibitors) like lanzoperzole and omeperazole which should protect the stomach.
I do hope June starts to feel better soon. We have been told that the meyloma chemo is the same treatment for amyloidosis and it can halt the progress of the laying down of the amyloid proteins in the tissue. Steve has deposits in his heart, which are causing heart failure. He is on a small dose of revlimid and we are beginning to see small changes in the myeloma but nothing in the amyloidosis.
I don't think you will have missed much by not going for the SAP scan. It was a biopsy which confirmed Steve diagnosis and the NAC have not been involved in his treatment or advised us about the future at all.
Good luck with you journey and i hope you can bring June home soon,
Much love Mari xx
Hi Eve,
I have only just come across your post. This is a very difficult one.
As you will know I have posted here often in the past. For me this forum has been about hope. We all know this disease is awful but we have all moved on through hope. Yes, sadly we have lost many of our number on our way, all of them much too soon, and we all know what is inevitably there for all of us.
I have stopped posting recently because hope has been hard to find. We have been dealing with hospitals, pain, disability and worst of all, loss of hope. I can't post about this, what does it give to anyone else. Everyone knows it is there, but no one wants to dwell on it. Stephen and I have been processing what all of this means to us. His condition is deteriorating and the doctors are talking in terms of months. We have no hope but we still have to make what life is left to us worthwhile. This is so hard. I know you know this Eve, you and Slim have been going through similar struggles. I am so sorry for you but I know you don't want my pity and commiseration, any more than I want it from anyone else. It is so hard to accept, I don't know why. That too, is another reason that I have not been posting, I could not bear the supportive comments, so kind and well meant. I have left so many simmilar comments for others in the past, and I really do not want to be the one in the position to receive this sympathy. I know that Steve and I are still in denial, and this week has been a bit of a landmark in our acceptance of our situation. I know I am grieving already, I am angry, I am frustrated and I so overwhelmingly sad, I cry at a moments notice, I wish I didn't. We are slowly beginning to have the conversations that we need to have to say good bye, but there are times I just want this ride to stop and let me get off, but there is no exit.
I don't need to tell you any of this Eve, I fear that you are pretty much in the same place. This has not been very well thought through, it's pretty much just a stream of consciousness, but maybe it explains why I am not posting much. I don't want to bring my anger and grief into this place of hope.
Most of you still have hope and in many ways I hope you don't see this, but if you do, keep hold of that hope, there is still life left for you, live every day as if it might be your last, and keep hold of hope,
Much love to you all, but especially to you and Slim, Eve,
Mari xxx
Hi John and June,
my husband Steve has also been dianosed with AL amyloidosis. You are right, it is nasty. He went up to the NAC in the Royal Free hospital in london. They were very good, they put him up in a hotel across the road over nightand he had the SAP scan and he had a fat biopsy from his tummy. He also had to go to The Heart Hospital in Marylebone for a Heart MRI which confirmed he has cardiac amyloidosis. There seem to be so many side affects of this disease, he has a very sore mouth and his jaw muscles get tired very easily. He also has carpal tunnel syndrome which is also related. We are struggling to get our heads around it. Like myeloma the symptoms can be very variable and individual. I am still stunned as to how this happened. His light chains were measured at 890 by the Royal Free but thankfully his kidneys have not been affected, yet.
I don't know if June has been to London yet but I hope everything has gone well for her,
Best wishes,
Mari
Great to see those numbers looking so good Dai, I remember that they have not always been so good.
Glad that velcade is working for you, keep going in the right direction,
Much love Mari
Dear David,
Absolutely chuffed for you, great news, have a fabulous holiday. Greece sounds lovely, I have been enjoying pictures of Santorini, no idea if Stephen will be fit to travel any time soon and it is probably horribly expensive, but it's good to dream.
I will throughly enjoy thoughts of you jetting away,
Much love, Mari xx
Dear David,
Thank you so much for your good wishes, it means a great deal. We always used to feel blessed because despite the illness Stephen managed to maintain a reasonably good level of fitness and strength. He has declined seriously since the Second SCT. That is why I posted and why I feel so strongly that it is such a fierce treatment that it can knock the body badly and it is so hard to recover, especially second time around when the disease and previous treatment have already taken its toll.
However I am cheered today, by everyones support, I have missed you all, and by a text I have just recieved which tells me that he is having his best day for months, and he is enjoying a coffee in the sunshine, so where there is life there is hope.
I have taken to using a motto in these tough times. It comes from Julian of Norwich, ( a woman, although that makes no difference)
[i]All will be well and all will be well, and all manner of thing will be well.[/i]
Amazing how that has helped me even in the darkest times.
Have a lovely day everyone,
Much love, Mari xx
Hi Jo,
so pleased to hear you are doing so well, long may it continue.
I believe a first SCT can be a wonderful chance for a good remission.
It's a second SCT I am concerned with. After a relapse the body and bone marrow is much weaker and and SCT can be a very difficult thing for the body to cope with.
It is a very personal decision and I know that there is some discussion about the efficacy of SCT compared to the new drugs there are today.
Much love Mari xx
Dear Helen,
Thank you so much for your perspective. That really needed saying, I think as a carer I am so caught up in not losing Steve that I forget his needs.
When he was first diagnosed, I needed to know everything, he didn't but he knew that I knew. He would not even come to this website, he still won't. Over time he started to ask me and he calls me his head of research. We have an unspoken rule, I don't tell him unless he asks. I dont go to all his consultations, even if at times he has needed me to physically get him there. It's a very difficult road to tread but I am very grateful to you for pointing out that it is indeed the patient who has the right to know, and only the patient.
I hope things are going well for you, i have been away so long, I feel very out of touch,
Much love, Mari xx
