[GayeParticipant]

Dear Kevin – I have tried twice to reply to your posting Not So Good Today but for some reason it won't send. Rather than try on your posting again I have started a new thread so that hopefully I can get my message through to you.

I was so sorry to read your posting about your health at the moment and the confirmation that your allogenic transplant did not work. That is not good news to receive. However I was touched by your comment that the decisions we take about our treatment are often a gamble – some pay off and some don't. I too took a gamble with a clinical trial which left one or two unwanted results but I don't regret it because there is no point. I admire your wish to want to go for something you hoped would give you a longer life – I think it was a brave decision and I am sad for you that it didn't give you the result you wanted.

Kevin, I know you were on Revlimid – are you still on this? I remember when we met at the Myeloma UK workshop in London, you told me that you were always positive and nothing I have read from you has shown me otherwise. Yes, I think there may be a few of us for whom 2011 brings its own challenges, but I know and I think you do too, that the wonderful people on this discussion board will be rooting for us all. I send you all the positivity possible Kevin and good luck.
Love, Gaye x

[GayeParticipant]

[GayeParticipant]

Dear David – It was my intention to post to you but having just read about Bridget's latest escapades – a proposed Indian sun dance in Luton and walking in the snow like a ballerina with a bowel problem (and the bowel problem is probably not one you wish to discuss right now!) I was thrown off course, but have now happily composed myself!

So sorry you are now feeling not great at the moment. It's a place where all of us who have had an SCT know so well, and some of us liked it so much we went back for a second time – I even know someone who has gone through it three times! Seriously it is not the most pleasant time but you will get through it soon and we look forward to when you want to start blogging again. You are very much in my thoughts David – get well soon!
Love, Gaye x

[GayeParticipant]

Do you know Nettie, I somehow get the feeling that you are really excited about's baby Erin's arrival and I also want to join everybody in congratulating you on your first grandchild! Such joy and I also love the name of Erin – it is such a beautiful name. The idea of Bridget doing an Indian sun dance in the snow is worrying but I would join her if I could to get rid of this snow so that you can quickly see your precious grand-daughter.

Again enjoy this wonderful moment Nettie!

Love, Gaye x

[GayeParticipant]

Thanks Tom and Dai – every time I resd this poem it still makes me laugh so I am glad you both have enjoyed it. Sorry about your cracked lips Tom:-S – when is this blooming weather going to go away. I freely admit to being a southern softie – I am even proud of it. Oh, I can feel Land of Hope and Glory coming on …………………!
Love, Gaye x

[GayeParticipant]

Hello Min – seems like the main roads are clear where you are but I bet the side roads are awful. Where do you live Min?

Yes, the beauty of it soon wears off and I too would be sharing your fed- upness with it all. We southerners are supposed to be complete wimps when it comes to snow – well I must admit to being one of them. Good luck!
Love, Gaye x

[GayeParticipant]

Dear Jean and Bridget – glad you like this one. As you say Jean it's the last couple of lines that catch us unawares. It did me too!

As I look out of the window I can detect litle snow flakes – I hope they stay little and infrequent.

Love, Gaye xx

[GayeParticipant]

Good morning David – glad to hear that you are still 10 in your happiness rating. I agree with all the other postings – you are a positive young man (note the creeping here David with young man!). Here in sunny Essex it is bitterly cold but a lovely blue sky and lots of frost – but no snow as yet.

In the Cliff vs Elvis competition I would have to go for the Pelvis. I remember my first year at an all girls grammar school when we jived around the wind up gramaphone in the playground to All Shook Up. Thems were the days ……! Keep up the happiness rating – thinking of you.
Love, Gaye x

[GayeParticipant]

When I was in for my second SCT I had regular visits from the Chaplaincy team even when I was in isolation. I am not a practising Christian but I just felt the need to talk to somebody, other than family and friends, about all the difficult issues that I couldn't express to those who love me. They were wonderful and all I had to do was ask for them to visit. Thankfully they did!
Best wishes, Gaye

[GayeParticipant]

Dear Lynnie – I am so sorry to hear of all the problems your husband has been experiencing and I am truly not surprised you are struggling with remaining positive and optimistic.

I could write chapter and verse about how I cope/don't cope as a patient but I can't as a carer. I sometimes think it is worse for carers because as patients we are in it and know how we feel. As a carer sometimes I think you must feel so helpless. I can't offer you much help in how to cope but I can say that you are wonderful in all the loving and caring for your husband. I am sure he knows that too. Lynnie I wish you all the strength you need and a very positive outcome to your husband's current situation. Hang on in there – you are being thought of on this discussion board.
Love, Gaye x

[GayeParticipant]

Hello Michelle – yes, itching is a side effect of Revlimid and I experienced it to a lesser degree. I didn't use any creams but I would suggest you contact Mum's team and tell them so that they can perhaps recommend a cream that will relieve the itching.

I do hope that Revlimid will help her. Will be thinking of you both.
Love, Gaye x

[GayeParticipant]

Hi Min – like Bridget I love the fact that you grassed him up to the day unit. Wonderful. How about 'Don't mess with me sunshine – you know I am always right' and decorate it with lots of green grass as a reminder!

I wish Peter well and it sounds like wonderful service from the hospital – when they sent the plasterer over did he do the ceiling at the same time …………Ooops, sorry Min, I am being silly!

I wish you both well and looking forward to the snow pictures if you get time. Thankfully in downtown Essex it hasn't yet arrived and hoping that it doesn't as what happened to Peter terrifies me.

Love, Gaye x

[GayeParticipant]

Good to hear from you again Vicky and welcome to the site.

David, I am really impressed with your happiness levels – I wonder how they will perform as time goes on! Yes you are a positive person and I know it is a must when dealing with myeloma and all that it throws at us.

You are probably in hospital at the right time to escape the snow and bitter cold – anybody out in myeloma land snowed in yet?

Keep the good work up David.
Love, Gaye x:-)

[GayeParticipant]

Hello Gill – no I have not heard of this trial and from what you say it doesn't sound as though your doctor has given you very much information on it. Did he tell you the results of your SCT? Does he want to give you this as a maintenance drug after your SCT? If you haven't had that information then I think it makes your decision difficult because of lack of information.

Can I suggest you contact either your consultant or a member of the team at UCH to get some answers to help you with your decision? You need to be really informed for your own sake. I do hope you get more information. Please keep us informed if you can.

Best wishes, Gaye x

[GayeParticipant]

Dear Bridget – phew, I feel exhausted just reading your story let alone experiencing it. If I had experienced the same as you my fingers would be bashing the keyboard to the hospital CEO – as I have grown older my Britishness has faded when it comes to bad hospital treatment, and what you have experienced is shocking. Trouble is when you are feeling rubbish it's hard to find the energy but you should not have had to put up with that. Your hospital PALS have to investigate all complaints if you wish to take it further.

David, as for your drugs, I know exactly what you mean. Like Bridget I always keep a close eye and check myself to see that I have the correct ones. I do hope your treatment is going well at this stage. I am thinking of you.

Love, Gaye xx

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