Moderator: Steering Committee
She went into hospital after becoming transfusion dependant to start chemotherapy prior to SCT as her brother was an exact match.
She developed complications during the treatment and spent some 40 days in ITC, fighting pneumonia and the effects of low blood counts, her immune system was not recovering and the prospect of the SCT slipped away.
She was treated very well by all the Doctors and Nurses at the Royal Sussex County Hospital in Brighton and I thank them all for everything they did for my wife.
She would have gone onto Kings in London for the SCT as she was under the expert attention of the Professors and I also thank them for everything they did for her.
My two daughters set about fund raising for Leaukimia Charities and to date have raised £2,800 to help beat blood cancers.
We as a family are devastated at our loss, but are so glad we had her with us for a number of years after diagnosis, which is down to the research and advancements in the treatments now available.
My advice to everyone is to remain positive throughout your experiences, we always did and strived to enjoy life to the full.
My best wishes are to you all for successful future treatments.
- Posts: 52
- Joined: 15 Apr 2010 16:56
- Location: Stoke Poges, Bucks
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 other Half Marathons, a 10 miler and a Spartan Race!
Like you, we as a family are determined to do all we can to help others in the future with more fund raising for vital research.
My wife was involved with the theatre and as a tribute they are organising a concert locally, with the ticket money being donated to Leaukimia Research.
She was well loved by all, so hopefully it will be a sell out ! A fitting way to remember her.
- Posts: 249
- Joined: 20 Nov 2008 14:05
we are so sorry to hear about your loss.
Please accept our sincere condolences, to you and the family, on behalf of MDS UK.
Thank you also for the courage to share this very sad news on the forum.
I know many users will be reading your post, and even if they can't find the words to reply to you on the forum, they are with you in thought.
We can see you have been a very active contributor to the online forum for some time, obviously do feel free to stay a member, if you wish, and if you feel there is some benefit for you or for others.
Your experience of looking after your wife and loving care for her will certainly always be of assistance to others - but everyone will understand if you need to take some time away to grieve.
We are sure the concert you are planning will be a very wonderful tribute to your wife.
And we hope it is a fantastic success at raising funds for research and awareness of the disease.
We'd be more than happy to advertise the concert on our website - please just send me the details - and feel free to post them on the forum itself.
For any queries:
Call 0207 733 7558
Please do not send me PM messages on this forum - I do not check it often.
This forum is purely for patient to patient communications. Thanks for your help.
- Posts: 75
- Joined: 04 Mar 2013 13:01
- Location: South East England
I am sorry to hear of your wife's passing. This must have been especially hard when she was so close to having treatment.
Thank you for taking time to let us know at this difficult time.
69 yrs hubby - CMML 1 dx Feb 2013
raised Monocytes was watch and wait
Nov 13 hydroxycarbamide.
Jan 14 blood OK back on w&w
Jan 19 disease advancement to CMML-F (fibrosis)
- Posts: 593
- Joined: 01 Dec 2009 21:52
- Location: Essex
I was so sorry to read of your wife's death due to complications of her pre SCT treatment. You must all have had such a sad and difficult time over those 40 days when she was in ITC. It is very hard for us with MDS to read of others dying. We know it may be on the cards for us and the horrible unpredictability of this disease is what makes it so hard to remain upbeat at times.A little bit of me loses hope each time I read such sad news. I strongly identify with your situation as I also have CMML (for 6 years this summer), my brother is an exact match for a SCT should I need (or want) one, I have been with my husband since 1968 so I can only imagine what you and your family must be going through and I hate the thought that I will probably one day put my own family through the same anguish.
It will take a long time but I hope that you will soon find life more tolerable without your wife and glad that you are doing something so thoughtful in her memory and to raise money for a good cause.
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