[GillParticipant]

Dr S gave a great big hint tonight that Stephen should, maybe, put his affairs in order. He is only 56. We are more than likely talking about less than a year. He can have a second SCT but he was warned that he would not gain much time from it.

He has taken it far better than me I am a wreck.

Thanks for listening you lot

Gillxxxx

[brochoParticipant]

Dear Gill I had to read your post 3 times before it sank in my god no wonder you are in pieces! I have been told no more sct either but no-one has suggested giving up hence the revlimid Surely we just carry on with the current and most suitable drug and there must be new trials coming up . Steven and I are the same age and it is so incredible to think of giving up I know you have a good relationship with his consultant but surely they must have a treatment plan in mind Lots of love to you both Bridget x Oh and bollox to myeloma !

[GillParticipant]

You should be in bed madam:-) Yes he will be put on revlimid but we were told that it will not help for very long in Stephen's case. I don't think he was that surprised. He is back on crutches and in a great deal of pain and has always been very philosophical about the outcome of this b*****d illness. Me?? I am in pieces. Was brave when Stephen was around but he is now asleep, it is very late at night and I am falling apart

Gill xxxxx

[brochoParticipant]

Hi Gill I replied about half hour ago but it has vanished , the first time those gremlins got me!! Blooming laptop fell asleep before I did last night but I am always up till at least 2 and often later The annoying thing is the pn in my feet gets me up about 6 am whether I want to or not . I do hope you can get some rest today and it looks like being a sunny one Can you get to France for a well earned break , would do you both good lots of love Bridget x

[eveParticipant]

Dear Gill

What can one say,sorry does not seem enough,The only thing I can say is I believe no one dies until they have had enough,and there seems to be acceptance of death,
If it is any help to you I try to look ,at are life together and think of all the good things we have done,and when i look back I consider that we are very lucky people,I hate the fact Slim has this mm,and its turned are lives up side down,But there is always someone worst off than you,
Saying that do not let him give up,enjoy every moment,you make sure you post when you feel down I am often up in the early hours,its your time,to get this out of your system,so have your cry and in the morning put on that big smile that will keep him going. eve

[jmsmythParticipant]

Dear Gill

I am so sorry to hear your terrible news. I just don't know what to say to you. I can understand you being in pieces. You have been a tower of strength to people on this forum and I hope that we an be of help and support to you. My love thoughts and prayers are with you both.

God bless
Love Jean xx

[DaiCroParticipant]

Hi Gill,

I am truly lost for words.

I am devastated for you and Stephen and in the reverse of reflected glory I feel the weight of your news on my own back. Stephens tenacity and your positivity have both been massive influences on my mm journey and I can only hold out the hope that either the revlimid, or a second SCT will give you both much longer time together than the consultant's prognosis.

Later, with love.

Dai.

[MinParticipant]

Dear Gill,
What can I say to ease the heartache I understand you will be going through. I have always thought of your Stephen and my Peter as being in the same boat, similar age bone damage etc.
If it is of any help at all, Velcade did not touch the sides of Peters mm, giving him the added problems of Pulmonary embolisms, and therefore additional medication.
BUT he has responded amazingly to Revlamid which in many ways is very similar to Thalidomide which Steven responded well to.
Don't give up hope until there is non. How can they know how well he will respond to Revalmid? It is a wonder drug and worth a try.
It has some unpleasant side effects in the first two months but after that it gets easier.
On the plus side not so much Dex to take with it too. Don't give up Gill and don't let them give up on Stephen either.I know your devastated but have hope that the Dr is wrong and Stephen and you can now get a break in you beloved France as Revlamid will allow you to detach yourself from the hospital for at least 4 weeks.
Im rooting for you both Gill and refuse to believe the Dr can see that far ahead. Peters light chains went up to a recorded high of over 8thousand on Velcade and the consultant said could have been up to 10thousand by the time he started on the Revlamid, the 1st course brought this down to under 2 thousand, Im hoping that Steven can respond as well too.
Get the tablets and run of to your France to recover from this blow and show them that he is still willing to fight.
Love Min

[BADGERParticipant]

Hello Gill

What awful news Like minimouse how can this doctor look into the future like that who knows what revlimid will do I speak to a lady at my support group who was told three years ago not much hope they put her onto revlimid
which at the time she had to fight for three years later she is well and still in remmission she was too old for an SCT so its the revlimid thats working have you though about getting a second opinion not all these docshave all the answers
e
Much love Jo

[GillParticipant]

You are all such a source of support. Today is another day and Stephen and I have decided to live in the moment (according to dog experts that is what dogs do).

The sun has been shining here all day. We have 2 stupid little westies that have chased each other(and us) ragged and the okay dokay bitd has just sung his evening song. I know, I know????? Listen to your local blackbird they do say "okay dokay"

What would we all do without this site? Thank you so much for all the people that make it possible. Have a good evening everybody

Heartfelt love and good wishes from Gillxxx

[eveParticipant]

good on you girl,
Have a lovely evening eve

[lorraineyParticipant]

Hi Gill,
I also don't know what to say but just want you to know i'm thinking of you both. I don't post on here very often but I read all posts and follow everyones journeys. Stephen and I had our SCT's the same day, but unfortunately mine didn't work too well and have been on Revlimid since October 2009 and am now in remission. I was so pleased that Stephen reached remission after his SCT, i'm just sad it hasn't lasted longer 🙁 I really do hope Revlimid works for Stephen. Love and hugs to you both Lorraine xxxxx

[PerkymiteParticipant]

Chin Up Gill, it has taken me a while to post on this, I do find it hard. Like Stephen I am on my last year – if they are right of course and they are not!

I have been putting my affairs in order for the last 18 months; I have even redesigned my family grave and am in the process of ordering my headstone, any expense I can resolve now means less for Mo to worry about.

I have been a great fan of You and Stephen and I am sure, like Mo and myself, you are really going to enjoy the time you have left. I wish you all the happiness you can cram in.

Kindest regards

David

p.s. If I have said the wrong words I am sorry – I just get too upset.

[zasrsParticipant]

Hi Gill

Have just read your news, I am so sorry, but Drs do not always get it right, the human spirit is very strong. Gordon had approx 5-6 years on revlamid and had a very good quality of life even with the dex until it failed and he was lucky to be able to have another SCT. I live in hope that there is always another with luck,a new drug or treatment coming along.

Hang in, there enjoy the sun and the moment and life!!

with love Sarah xxx

[mhnevillParticipant]

Hi Gill.

What to say to you and Stephen? No words help and I feel sure it is worse for the care giver.

Yes, living in the moment is the best each of us can do with this horrible disease. Blessings as you try to do this. I have found the sunshine has helped in some ways, but has also reminded me of what I can't do!

All blessings to you both.

Mavis

[Author]

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