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Sally_McNamee
MemberI can’t say how sorry I am to hear about Neil’s passing. 5 years ago when my mum was diagnosed Neil was a tremendous source of knowlege and support, as he has been to everyone who uses this site. He never failed to explain things to me and try and keep me calm. His family should be proud that he was such a great friend and inspiration to all of us in this MDS family.
MemberHi again
Well I said things might have changed since 2003 – the specialist I mentioned is Dr. David T Bowen. He’s pretty famous. He’s also now working at a teaching hospital only 60 miles from where Mum lived. Had he been there in 2003, who knows what a difference that would have made …
Oh well, no good thinking ‘if only’. But it might be worth you contacting him if you have to come back to the UK.
While I’m posting can I please say hello to old friends – hi Neil! And Barb Greene, don’t know if you’re still reading but hope you are well. I’ve moved to Canada since Mum died and really enjoying it.
SallyMemberHi Trish
I used to post a lot to the forum when my Mum was ill. She died in 2003 from MDS/AML.
I believe Prof. Mufti is excellent, but my experience in the UK was not good – although as always, every case is different. Because of her age (74 when dx), my mum was not offered any treatment other than transfusions when required and tranexemic acid (i think that was right) to prevent bleeding (it didn’t). My experience with the NHS was that I had to battle for everything for Mum, and I’m sorry to say I mostly lost the battles.
However, your experience might be very different, and things might have moved on since 2003. Plus, if you can get to see Prof. Mufti or the other specialist of note in Scotland (sorry, forgotten his name – David something. I’ll try and find details and post them here) the treatment you get should be much better.
I never found a support group in the UK, but can’t praise this one enough. It is such a good source of information and support.
I wish you and your husband the very best of luck.
SallyMemberHello again,
I meant to say, in relation to tx, she had 2 units every 3 weeks following discharge from hospital following the SAH. In effect, having transfusions only lasted from October – February. We made the decision to discontinue tx when it became clear that it was just cruel to take her out of bed, into patient transport and then spending 7 hours in the clinic when the benefits were negligable and she was clearly confused and uncomfortable. From the time of discontinuing tx to her death was around 6 weeks.
I am pleased that this information is of help to some of you. This kind of discussion is hard to write and, I would imagine, harder to hear for those of you who may have this to come. However, it’s not all bad. We had some very special times together in the last few weeks and I wouldn’t have missed being with her at the end for anything.
SallyMemberHi,
My mother died in April 2004 from MDS which transformed to AML. She was not offered any treatment by her Drs (we live in the UK and that’s fairly routine practice with the elderly) so in effect only received palliative care. I can share with you what happened to her, but you must remember every MDS patient is different.She lived 15 months from diagnosis. Following a sub-arachnoid hemmorage 8 months after dx, she suffered from cognitive problems. She went on to develop Sweets Syndrome and suffered frequent nosebleeds, bleeding from the Sweets sores and bleeding generally through the skin. Patti is right about the sleeping, the last 3 months she mainly slept, becoming more and more frail until at the end her body was almost skeletal. Her doctor said that sleeping herself away was ‘the best we could hope for’. She did eventually die peacefully in her sleep, and it was a blessing for her.
MDS is, as we all know, not an easy disease to live with for patients and carers (understatement!). I hate it.
I continue to read the messages on the forum frequently and would like to take this opportunity to pass on my best wishes to all here. Although many of you will not know me as it is so long since my last post, I admire each of you enormously. Keep your chins up and keep fighting!
Regards,
SallyMemberHi Tah. My mum was given this drug under the name tranexamic acid in the latter stages of her illness. This was in fact the only treatment other than tx that she was offered. I don’t know that it did any good to be honest, she would bleed from her skin copiously even with the drug. May have been worse without it though.
Sally
MemberCarrie, thanks! Peeps are so cool!!
MemberSorry, but I have to ask. Being in the UK I have no idea what ‘peeps’ are! Please, please, enlighten me!
MemberRon was dx within a week of my mum with the same classification – RAEB. It’s very strange that they died within a week of each other – but a year apart. Barb and I have supported each other on and off this list, and like Suzanne I feel like I’ve lost part of my family. Barb is a star. She and Ron fought to the last, and we will continue to support her as she fights to carry on without him. Miss you Ron, love you Barb.
Sally
MemberDear Deb,
I know how you feel about wanting to know what’s going to happen. I’m going to tell you about my mum’s death. I’m telling you all this in the hope that it will help you prepare – as much as we can ever prepare for the loss of a loved one. I have to qualify this with the comment that not all MDS patients are the same, and there are no guarantees. But the best we can hope for is that if it’s going to happen, death comes with dignity and peace.
3 months before my mum died last March from RAEB/AML I asked her consultant what would happen. She said that gradually her body would shut down and she would begin to sleep herself away – and I remember very clearly her saying “that is the kindest thing we can hope for”. This is roughly what did happen, although she had some awful skin involvement and did suffer for a while, but the last 5-6 weeks were very peaceful, and she was kept comfortable. She had a collapse on the friday, and didn’t wake up again after that until she died sunday evening, 21st march.
I held her hand as she died, and in the last minutes she opened her eyes and looked at me. I don’t know if she knew I was there or not as she struggled with her breathing. Although at the time holding her hand while I knew she was dying was so hard that I didn’t think I could do it, afterwards I felt priveliged to have been with her and helped her in her final moments. I now feel that it was possibly one of the best things I’ve ever done. Isn’t that strange?
I hate MDS, and I hate the way that she suffered. But I’m glad I had those last few peaceful weeks with her.
Sally
MemberDear Barbara and Ron,
I check the forum out every day to see how you’re doing, so I’m very sad to see that the news is not so good. I know how hard you’ve both tried and what a journey it has been.
I can’t give you any advice on treatment, but can talk about my experience with Mum. It’s a year, almost to the day, since I had to decide no more treatment for her and I have to say it was the best decision I ever made. We had six weeks where she was (mostly) very comfortable and sleepy and where, when she was awake, she was pleased to see me and could enjoy the chocolate bars I brought her. I wouldn’t have missed that time for anything.
I will be thinking of you both and hoping that something turns up.
Love
Sally
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