Hi Sue,

I find it hard to believe that it's the drug company who is witholding the Pomalidomide. If it's a matter of cost that will be down to the Health Trust covering your area – and not fitting the criteria? what is that all about? – have they explained this to you?
Patrick recieved Pomalidomide on compassionate grounds, as you would…[Read more]

Dear Jo,

So very sorry to hear of the loss of your father I am sure he put up a brave fight against this B * disease. I lost my husband last May, we were together 34 years and I know how hard it will be for your mother. It will take some time to just remember the good times- but you will, believe me. As Bridget says stay strong and you will get…[Read more]

Hi Sue,

My email was down for a bit but is up and running now. Hope to speak soon.

Tina x

Hi James

My husband was a fairly regular visitor to the gym but had to stop when he was 53 because of mm The trainers had never heard of mm and could only suggest a regime that people with heart problems follow. It was not at all suitable for Stephen as he has collapsed vertebrae

David is right but swimming was out for Stephen as to his…[Read more]

Hi Eve

We live in Orpington and when I visited Stephen in Kings found the train the easiest option 10 minute cab journey to th station this end an a down hill walk from the station to the hospital more difficult back to the station but not lumbered with strange desired morsals of food:-) I hate driving in London and found parking was expensive…[Read more]

Hi Penny,

My husband had a SCT in Dec 2007 and much like Elizabeth sailed through and did not suffer with either sore throat and diarrohea. His main suffering was due to boredom!! Patrick was up and running in about four weeks.
Best wishes to you

Tina

Hi Dave

As you will know mm is a very unique cancer and no 2 people seem to react to either the illness or the treatment in the same way.

Stephen was diagnosed when he was 53 . Unfortunately, although his SCT harvest was really good, he got less than 18 months remission. There were plenty of stem cells left for his second transplant but it…[Read more]

I am in tears over your post but do understand. Who will advise me over our 2naughtie Westies? Who will be there instead of you?

Good Luck Min. I wish you all the best. I am sure that Peter was a rock for you but he was also a lucky man to have found you

Gill xxxxx

Wonderful news Tom

Congratulations and love from Gill xxx

Hi Bridget

What a bummer. Stephen had radiotherapy for pain and when the pain came back was told the same as you They cannot zap the same spot twice. He had spent a week saying that the radiotherapy had made things worse ( he was told it would be worse before it got better) and then at least another week wanting to marry the guy that prescribed…[Read more]

Hi Sarah

Just wanted to wish Henry the very best of luck My husband had 2 SCTs and had very little side effects (oh boy did I take some strange edibles to Kings College Hospital)

One tip When you get him home serve him tiny amounts of food on a side plate It doesn't overwhelm and he can always have seconds. Stephen craved home made Shepherds…[Read more]

So sorry that you have had to join us but welcome. My husband has had 2 SCTs but relapsed quite quickly . He is now on revlimid and (fingers crossed) it seems to be keeping the mm under control.

We were told some time ago that mm is regarded as quite sexy in medical circles ie. It is an illness that doctors are very interested in and are…[Read more]

Hello Jean

Hi jean sounds inapprpropriate 🙂 The rash that you described is just the same as Stephen got to start with. He had been pruning our wisteria using a small scaffold tower and slipped. He landed on his bum and as the day progressed it became painful. He asked me to have look (the things we do for love) it just looked red but no…[Read more]

Nice to have met you in name even better face to face. You have made me feel guilty my picture is quite old I always loved it as Stephen is pinching my bum off camera hence the giggles:-) . I must post a more updated photo. Me fatter and Stephen with less hair. Before chemo his hair grew backwards now it grows forward

PS did you know that you cannot get shingles unless you have had Chicken Pox?

My husband (Stephen was diagnosed in Nov 2008 aged 53 ) has shingles at the moment. He is in agony. It attacks the nerve endings and causes a huge amount of pain. He is sore but he says he can put up with that but the pain is v.v. Bad (this from a man with several collapsed vertebrae who has to rely on walking aids to leave the house and does not…[Read more]

Sorry to see you here but a huge welcome

Gill x

Hi Sue,

Great to hear you don't have to go through with Chemo – brilliant news. If you ever want to private email me don't hesitate – pa.davis@virgin.net

Keep on harrassing the medics for treatment for Michael I am sure something will come along soon. I know how draining it ca be but in the meantime stay strong and look after…[Read more]

Oh Sue I was really worried about you both, thankyou for taking the trouble to let us know how you both are doing. What an awful few months you have been having although not just the last few months I know. Have you asked about Pomalidomide for Michael or is he too unwell at the moment for any treatment?
What about you? do you have a treatment…[Read more]

Hi Tom,

I love your song choice – have you heard the Platters version?

Tina