Brilliant that it has gone Keith – I hate drugs when they affect my taste. Whatever you told it to do it seems to have taken notice!

Love, Gaye x

Dear Bridget – I love the casual way your doc says there is always a way to get the drugs you need! I like him/her.

When NICE gave the OK for Velcade to be used it excluded it for first line treatment using it only after relapse. As time goes on I think we will see more and more people going on it for a second time, particlarly as they can…[Read more]

Jo – go to the bottom of the treatment home page and there is a button saying start discussion. Press that and you are ready to go. Good luck with the bendamustine. I know that Patrick has had bendamustine but I've no idea if it was a combination drug or on its own.

Love, Gaye x

Dear Susan – yes, I have had velcade twice. Once to prepare me for my first SCT and the second as treatment on its own along with dex. It sounds as though it really suited you well. I had a gap between both treatments of about 2 – 3 years. Your doc may well want to try you on something else so just ask him all the questions you need to know.…[Read more]

Dear Sylvia – I am sorry I was a bit confused about your surgery and it all makes sense now. The balloon kyphoplasty is a doddle compared to your experience and of course Bridget (aka metal mickey, mother whale etc etc). I can understand your need to feel someway normal and I truly hope your treatment will bring that for you. Hold on to that…[Read more]

Dear Sylvia – I have had two operations on my spine, known as balloon kyphoplasty. The operation is done by keyhole surgery where cement is inserted into the collapsed vertebra. I was in overnight for both ops and the relief from pain was almost instantaneous as well as a return to my ease of walking and posture.

I am sorry that you have…[Read more]

Thank you Keith for your very kind words. As always they mean so very much to me. What I have found in posting is how many of us are beating the times the docs give us – I call it my sell-by date and that really spurs me on for future patients. They will get there but in the meantime we have to get on with our lives with hopefully improved…[Read more]

Dear Jenny – I am so glad your lovely Dad is now in the hospice where I am sure you are all being treated with such dignity and love. He has made his decision but I know how painful it must be for you. I echo Tom's wise words about counselling (tears and all). Most hospices provide this so do use it if and when you decide to want it. In the…[Read more]

Thank you all for your lovely and different replies which goes to show there is no standard way of living with myeloma. It seems we very much need support and love which isn't always forthcoming for some, denial seems to appear throughout as our way of dealing with what we find hard to deal with.

I wasn't sure if my thought for the day was…[Read more]

Dear Bridget – so glad you have finished all your RT and hope you will feel the benefits sooner rather than later. You must be exhausted going up to London 5 days although at least you are in a car which helps. I have to go up by train and taxi to Barts so anything like transfusions and RT I always have at my local hospital which saves the…[Read more]

Dear Min – I am glad Peter starts his Revlimid today and I wish him good luck with it. I found it very tolerable and was able to live a near normal life with it although it did make me very tired which I caved in to rather than fight it. Good luck with sexy dexy!

I laughed when you thought that Revlimid packaging looked cheap compared to…[Read more]

Sarah – I see the phantom hand has come back again on your shoulder after being airbrushed out! It never fails to make me laugh!
Gaye xx

Dear Jo – great picture and good to see you in full feature. Well done – you finally cracked it!
Gaye x

Hello everybody and thanks for all your messages. Dai, the pompoms it shall be. They come in a red capsule – no writing – zippo. As basic as you can make them. I started the second week today and the dexy blighters floated like a butterfly down the old throat this morning. No up-chucking today Min – I took control. Not much change in the…[Read more]

Thank you all very much for your help. I can't take tramadol as it contra-indicates with another drug I take. Typical. Tina, at the moment I am just taking co-codamol but it doesn't even begin to touch the pain. Keith I am so glad your pain has gone now you are on treatment. Bliss!

I read that Susannah York died last week of advanced bone…[Read more]

See what you started Phil! By the way when you had your last Bone Marrow Biopsy can we asume it was WITH anaesthetic or was it a re-run of the Benny Hill opening shots! Come on, own up!

Love, Gaye xx

Dear Jenny – I am so very sorry to hear about your dear Dad and all the awful feelings and emotions it has stirred up in you all. I understand his decision totally and he has every right to make it. But what now? As a great supporter of hospice care, if the palliative care team can get him into one and he wants to go, he will receive wonderful…[Read more]

Thanks for all your replies and support. I am happy to report that my beloved dex sailed down the throat today and happy to start its tricks. May God bless them and all those who sail in them ….!

No need for the dex sarnies today Min but a cracking idea for the next potential up-chuck!

Pompous letter is taking shape in my mind re hospice…[Read more]