[GillParticipant]

I am so sorry that your dad has reached this stage of mm so quickly. Love and prayers for you and your family Gill x

[GillParticipant]

Dear Joe

I am so sorry for your loss. Please read Min's post "a week of firsts" It is my husband that has mm and sometimes I dread what the future will bring but life will continue in some way or other.

Please stay in touch on here. I know that everybody on here has you and your mum in their thoughts

Kindest regards Gill x

[GillParticipant]

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 shame he can only manage about 5 strokes (about 2 more than me)
Walking does seem to be the answer and we bought a dog. It was not a knee jerk re-action as we had always planned to have a dog when we retired and were home all day. Stephen becam too ill to work and so I took early retirement

Mind you we didn't plan on 2 dogs but when the first one was about 20 months old we got a second for our sins. We don't regret either of them. The are a constant joy and Stephen says when he is feeling unwell they get him out of bed in the morning. Probably that has something to do with both of them standing on their hind legs by his side of the bed and squealing until he gives them a couple of cherios each. Idiot husband keeps a little bowl of cherios on his bedside table:-S

I do hope your treatment gets sorted out

Good luck Gill

[GillParticipant]

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 although I took Stephen by car when he was admitted and picked him up on discharge

Love from Gill

[GillParticipant]

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 did not take. He is now on Revlimid and not doing too badly. He will be 57 next month. (I am 5 years older any other ladies out there got a Toy Boy:-)

I do wish you luck Dave Let us all know how it goes.

Kind regards Gill

[GillParticipant]

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

[GillParticipant]

Wonderful news Tom

Congratulations and love from Gill xxx

[GillParticipant]

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 it as he felt so pain free

Dribbling comes with age I think nothing to do with illness I do it all the time. I wake myself up wondering who on earth is snoring and then find I have dribbled on my pillow. Definitely classy.

As for the cost of treatment We are still partly covered by our health policy and see the invoices they pay. Thank whatever God or Faith you believe in for the NHS. Not wanting to get political I don't think we pay enough into our NIC contributions. I think we should pay more and it should be ring fenced for health not other benefits

Gillxxx

[GillParticipant]

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 Pie topped with grated cheese and crunched up crisps to give it that lovely crunchy baked top. He could only manage a couple of spoonfuls but declared it was the best food he had ever had in his life.

And yes we do eat less basic meals than Shepherds Pie sometimes:-)

Anybody want my recipe for Chicken with Smoked bacon and lettuce? Our kids mock us as foodies and love to come to dinner. You can imagine the leg pulling that Stephen got for his "longing " for shepherds pie

Good luck Gill

[GillParticipant]

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 working hard to understand and control it

It seems that the further forward the drugs go the more the medics are trying to use drugs rather than SCT

All the best Gill

[GillParticipant]

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 bruise.

A few days later the area turned into a red rash that changed into black pimples and eventually turned into blisters. He has now gone from very bad pain (nerve endings) to very very sore blisters. The poor man is walking like John Wayne

Stephen was prescribed aciclovar (for long term use) and cream but has found that using lashings of good old fashioned calamine soothes better.

I cannot let him ask for calamine in the chemist as he asks for camomile by mistake

Tea or a camomile lawn anybody?
😎

[GillParticipant]

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

[GillParticipant]

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

[GillParticipant]

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 mention pain very often but has to use morphine)

I have no idea what it must feel like but suffice to say (close your eyes gents) most of the blisters and pustules are between his inner thigh and all over his scrotum. He says he could put up with that if he could stop the pain

He was prescribed cream but finds old fashioned calamine lotion better. Boots 79p. Suggestion don't just dab it on stand over an old towel and practically bathe in it. He is using one of the towels we dry the dogs off with. Yes I did wash it first 🙂

Love from Gill

PS to jean Do you have a Practice nurse at your surgery? We can always get a same day appointment with her and if she cannot prescribe what Stephen needs or is concerned about him she calls in one of the GPs between appointments. Maximum wait 20 minutes or so. She advised us to go down this route and it seems to work

[GillParticipant]

Sorry to see you here but a huge welcome

Gill x

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