[susannahParticipant]

Hi Gill This is the first time ive looked at the site for ages, I often wonder how the rest of you are coping. Its its two and a half years since Michael died like you some days it seems longer than others I to have done things that I never thought I never would .but I always believe Michael is with me. Would be nice to catch up drop me a line
love
Sue

[susannahParticipant]

Dear Eve I am so sorry Slim has passed away, and I hope everything went well for you on Tuesday.
I remember you when Michael was in his final days and the comfort you gave me with your kind words.
Love and Hugs
Suexx

[susannahParticipant]

Hi Gill no what you mean about songs, I don’t know if its because were more aware, I keep hearings songs from the past which meant a lot to us both, they seem to be playing all the time or have they always been played and I took them for granted ( god I do ramble on sometimes, but I know what I mean)
Strange isn’t it I feel worse now than I did 9 months ago, I don’t cry as much but its the emptyness, I feel like half a person.
It good to hear from you take care
Suex

[susannahParticipant]

Dear Ross Janet and family

I just wanted to add my condolences to the long list of names Your dad gave me great comfort during my husbands last months I will always be grateful for his kind words

Love to you all

Suex

[susannahParticipant]

Oh Gill Im so pleased your home safe. Stephen would be so proud of you. it did make me smile though especially the bit about loosing your car. I thought it was only keys we were supposed to loose!
Love
Suex

[susannahParticipant]

Dear Gill I think you are doing brilliantly. I cant even get rid of Michaels clothes. I take them out of the wardrobe fold them neatly and then put them all back again. I know its only six months since I lost Michael but I feel as though im going backwards

Take Care
Suex

[susannahParticipant]

Hi Gill I cant believe its a year since Stephen died. I just wanted to wish you all the best for your journey Im sure Stephen will be with you every step of the way. I do admire you

All my love

Suex

[susannahParticipant]

Hi Eve I think with myself and Michael. we both knew things were getting worse, but as there was always another trial or some form of treatment for him we just carried on,im not saying we buried our heads in the sand but we didn't face up to the fact Michael was getting worse. But looking back now im pleased we didn't. Once we new he only had 3 months left it destroyed us both, so given the choice again I would go on believing there is always hope.

Big Hugs to you both
Suex

[susannahParticipant]

Hi Gill it sounds wonderful . but I don't think Im brave enough yet,part of me is saying go for it,but its a big step

Suex

[susannahParticipant]

Hi Gill Its so good to hear from you. im pleased the journey went well ( I know you were worried about it) I scattered Michaels ashes last night (it was my birthday) I know how hard it must have been for you. But I don't know about you but I feel more relaxed myself now ive done it.Your house in France sounds beautiful. If you want someone to go with I have lots of free time!
Take Care

Suex

[susannahParticipant]

Hi Annette I am so sorry to hear about your, my husbamd passed away nearly 4months ago, his consultant told him he had 3 months to live. Believe me you do not want to know how long he has left,that is all we focused on and Michael lived his last 3 months terrified knowing he was going to die. if your dad is calm and happy leave him be as Angie says why worry what lies ahead you cannot change it. Enjoy the time with him,you will remember these moments, not like me I remember Michael a frightened man.Im not sure I know what your GP means about the calm before the storm.
Live for the moment
much love
Suex

[susannahParticipant]

Hi all I must say that I do agree about the trials being more important than the person. When Michael was on the Bendamustine trial there were regular phone calls asking what if any side effects he was getting and even when he had to stop treatment (this was because he had very low platelets and the trial criteria stated he could not be given any even though the drug was working,) we had to visit the trial team so he could still be monitored for several months after. But we were then shipped back to our local hospital for CDT.
Even in the early days Michael could not get Velcade or Revlimid because of our post code.we ended up going through our MP. But these drugs were on trial just 20 miles down the road.
Ive learnt a lot about MM and treatments over the years and my opinion is you have to fight for everything

Regards
~Suex

[susannahParticipant]

Dear Sue I am so sorry to hear about Keith another sad loss to Multiple Myeloma, my heart goes out to you and your family

God Bless
Suex

[susannahParticipant]

My thoughts are with Keith and his wife Sue. I always remember Keith from the old site when I was fighting for Velcade for Michael, he was always there to support me. God bless you Keith.
Love
Suex

[susannahParticipant]

Dear Dai Michael was in a similar position with the Bendamustine except his was low platelets, he had reduced doses missed cycles because of his low count but his consultant wouldn't give him a transfusion. Looking back we should have taken it further, but we assumed she was right. Saying that he did receive GCSF injections. I thought quality of life was important,your consultant obviously thinks telling you to stay away from your grandchildren will have no effect on you.
I know what you mean about the consultant catching up while you are there, she perhaps needs a wake up call!
Love
Suex

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