Thank you
This site is a life line to so many and a place to grieve. Thanks to all the team
Gill
No magic wand from here I am afraid. What did help Stephen a little was keeping extremities extremely warm (excuse silly choice of words)
Feet soed in warm water,loose bedsocks etc.
I wish you both well Gill xx
I have calmed down now but just wondering how they got on here Will we have a cure next? Snake oil methinks;-)
Gill xx
PS to Tom go into general and look for the post headed passports
Thanks for your thoughts Jean.
David I forgot that the site has moderators. I know that when I first joined I read that we are pretty much left to monitor ourselves and people generally only use "indoor language" with an occasional asterisk thown in.
But I was fuming when I saw this advert this morning
Love from Gill xx
Hi Sue
The first thing Stephen was told when he became ill was that pain management is the highest priority. Do get on to Michael's medical team and ask them to re-assess his pain control drugs.
It cannot change much for you or Michael but I am sure that you know everybody on here is routing for you both.
Love from Gill xx
Do check with the doctor but Stephen used Corsodyl toothpaste and mouthwash during treatment (not good to use it on a long term basis but it really helps)
He managed to get through all treatment with not one ulcer or mouth problem.
Good luck from Gill xx
All I can do is wish you tremendous luck with whatever you decide. As Nettie said this is such an individual illness, and with that comes very individual decisions
My husband only got 16 months remission with his SCT and the second did not take. He regretted that he went for the second but said that hindsight is a wonderful science and we both agreed that he should go ahead with it or be left forever wondering "What if".
Stephen was 53 when he was diagnosed He had a very aggressive form of mm and died 10 weeks ago 4 years after diagnosis.
Please let us know how you get on. It is always so nice to hear of people that get long remissions and respond well to treatment. I hope and pray that the cure for mm is within sight for everybody.
Love and good luck from Gill x
Hi Kes
mm is a complete and random illness. Some people live for umpteen years and others (like my husband) don't get that long.
Stephen and I decided just after he was diagnosed that if we did not continue our lives "normally" whatever that is he might just as well die there and then
We made no long term plans ie well in 8 years time you will get your state pension and we will ……. but we did plan a little way ahead ie shall we go to France next month shall we look at booking up?.
Yes it was bloody hard sometimes but we lived every day as normally as we could right up until a few days before he died He was 57 but we both decided that if we didn't "live" neither of us would have any life and we both wanted to get the best and most we could out of whatever we had left.
Please Please try to live your life as you would. I always said to Stephen "you are diagnosed to go first but Hey what's to say I don't get run over by a bus tomorrow" so we tied mm up into a little box wrapped it in string and put it to the back of our minds until we had to get it out and unwrap it
mm attacks your body please don't let it attack your whole life Plan your plans. Dream your dreams and live your life to the full. After all there may be a no 3 bus with yours or my name on it just around the corner:-)
Good luck and good health from Gillx
So pleased to hear your news
Tip for sore mouth Corsodyl you can get mouthwash and if she can bare cleaning her teeth the toothpaste helps a great deal
Keep the good news coming Gillx
Hi Colin
I have no idea what the phrases mean but I do know that when Stephen (husband) asked the nursing staff to explain they did.
Stephen made it quite clear from the start that he wanted to know everything. He was a great deal braver than me
God luck and good health Gill x
Thank you all for your kind messages and thoughts.
I am learning to start getting into my own routine and not "our routine". I walk the dogs, clean the house (lazily :-)and shop daily so I have human contact I even go out for lunch once a week. I am trying to find out about part time courses one to brush up my French and one to make my stick people look more like humans and yet sometimes it just wells up.
I sit down to watch something and keep looking to the sitting room door as I will have to fill him in about the bit he has missed. This morning I woke up and did what I have done for years (before Stephen was even ill) I think what day it is what I have got to do and did I get anything for dinner. I'd bought some chicken yesterday and fried some of that for dinner, there is still some left. I don't know if maybe I had started drifting but I suddenly thought "Why didn't Stephen have a dinner last night?" I just laid in bed sobbing until the dogs let me know they needed to go out.
Thanks again to all of you and keep well
much love from Gil xx
I hope your dad's funeral is a great celebration of his life. Good luck and keep strong for your dad
Love from Gill
Dear Rachel
I don't very often look at the under 50s site but having done so tonight I would like to add my sincere sympathy to you for your loss. mm is so unforgiving and spiteful. My husband died on the 11th September He was 57 and considered young to die from mm But being wiped out at Paul's age is unbelievable.
Much love Gill xxx
Thank you for that Dai
It was very much one that both Stephen and I loved It maybe explains my smart red hat and purple pashmina. I still have a purple dress ordered for his funeral but unpacked and unworn as it seemed a bit over the top. (we were both a bit non conformist but there are certain things that one does not do and dresses are not my thing.) Mind you I believe that purple used to be a mourning colour. Stephen would have known. He loved English History (sorry Dai Welsh history never came into it. xxxx
Keep well all of you Gill xxx
As somebody who lost the light of their life in September I send you my heartfelt sympathy
Gil xxx