And my username has gone weird.

And when I try to edit a post, the old text disappears.

I hope you make the right decision and that all goes well for you and your mum. X

I have had intravenous Zometa every two months since Sept 2009…[Read more]

I hope you feel better today. I am taking a bit of a risk, but I thought I'd share a story about my Dad. He was an extreme practitioner of 'gallows humour" as you will see, but there is maybe a bit of inspiration in there as well.

I sat with him in front of a grim-faced Consultant, a nurse and a McMillan nurse to receive the…[Read more]

Cheers

CN

Anyway, I wondered if anyone could answer this:

When I had my stem-cell harvest, two packs of my cells were frozen. One was used for my transplant and the other was to…[Read more]

I have had zero paraproteins, or at least "immeasurable" amounts since my stem cell treatment in September 2009. The Consultant I saw most recently told me that the levels may have now increased, and I am waiting for the definitive result.

My question was going to be – At what level do they start treatment again? – but I…[Read more]

I saw this on the BBC website and thought it might be of interest. Take it for what it is.

Cheers. CN.

http://www.bbc.co.uk/news/health-14572284

Nile Rodgers from Chic has cancer – like us! Watch him play and it'll cheer you up!…

http://www.youtube.com/watch?v=mMqRxDZpWIg

I still take the anti-histamines and it sorts it out.

I get Cetirizine on prescription, but you can buy it over the counter in Boots, etc. It's what sufferers take for hay fever and other allergies. I am not medically qualified to recommend it for John of course, but I hope you can ask his doctor about it.

I saw little kids having treatment whilst I was in the Marsden. It is very humbling.

When I first got home from the hospital, I was very itchy and after showering, my skin would go blotchy…[Read more]

Felt very rough from about two days after stem cell transplant. Sickness. Not wanting to eat. Tired.

Went home feeling weak, tired and sick.

Felt better about four months after stem cell transplant.

Been feeling better than ever since then (18 months).

CN

He said I have slightly lowered calcium levels and this might be something to do with it. But he said it is more likely to be repetitive Stress injury due to the guitar playing.

He even suggested I might give it a rest for a while. :-S

Anyone…[Read more]

For instance, I live near Gatwick Airport.

I think you should start a new thread about this, so more people get to see it.

😎

The index finger of my left hand has recently become difficult to bend. I am unable to form a fist with it as it will not clench far enough. It is often worse in the mornings and sometimes goes away after it is lightly excercised. There is not really any pain, but it is uncomfortable and sometimes makes a muffled "click" when…[Read more]

I sent you a PM about treatment – hope it helps.

KWilson – I also have problems with missing family. It's a nightmare. I am putting it off, as it is hard to deal with.

My mum took part in clinical trials for the Myeloma. She was getting on in years and I think she knew she had nothing to lose. I like to think she helped me…[Read more]

I have a questionnaire to fill in and return to my local hospital.

It is interesting, as my mother had Myeloma and I always suspected that might be a factor in my developing the disease.…[Read more]

I go to my local hospital and am weighed/ measured. Then a drip goes in – it is only a small bag and it is complete within about half an hour. I got a bit of a backache the first time, but since then, it's been fine. They told me to watch out for gum problems whilst on it, as holes can appear leading to…[Read more]

I just looked at the packet to check.

I know. If I use this 🙂 next time…

I would also like to join the Under 50s clique.

(Sex, you say….?)

My toilet was twenty yards away with a chair, and drip tubes to get past first. Then my PJ bottoms would have to be held up, as they were too big. The toilet was shared with three other patients who I think waited until they saw me move slightly towards the door before rushing to the throne room and locking themselves in.…[Read more]

They tell you that because they have to, but it does shake you up.

I suppose it's a bit like doing a parachute jump and the instructor saying "Of course, it is possible the parachute won't open and you'll be squished". It's stating the bleeding obvious.

On the subject of side issues, does anyone else have seemingly never-ending coughs…[Read more]

J

Dai – You big baby! 😉 I played in my duo at a wedding a month or so back and that was the first time live since SCT. It was a doddle apart from the packing-up.…[Read more]

I had pains in my shoulder after coming home from SCT. I had physio which had little effect.

The pain gradually went away, but I feel a general weakness in the affected arm still after 14 months.

I put it down to lying awkwardly in bed in hospital. I had a drip, etc in the affected arm and wondered if I held…[Read more]

Is your username your real name – or the name of a Black Metal band 🙂

I was on the old site, but can't remember my log in name. However, this new site looks good and seems to be popular.

My name is John and I have MM.

I am just over 14 months remission following an autograft at The Royal Marsden. Feeling great/ back to work/ back into my…[Read more]