In case anyone wishes to know, my friend Pete successfully completed the marathon, hot and slow he says. So far he has raised £280.00, but I think this will be split with The Prostate Cancer Charity as well as Myeloma UK.

His Just Giving page is still open.

You kept your eyelashes?????

Wow! That's exciting. I was thinking of not buying a wig for my head, but maybe some of those 60's style huge spidery false eyelashes – just to make a point. Maybe I won't have to…?

Sitting here laughing… kinda!

I have the absolute opposite weight problem…

Throughout January, prior to being diagnosed, but unknowingly having hypercalcaemia, I had no appetite, felt nauseous and could barely eat a thing. I lost 14kg – that's 30lbs.

Since my diagnosis, I have a friend living with me who puts a lot of effort into…[Read more]

Hi Sandie

From my own experience, the radiologist's report will not be so necessary for diagnosing MM or not because of lytic lesions – they are fairly obvious. If you have a look on Google images, you will see. So I'm sure the haematologist will be able to tell immediately if it's MM or not.

However, what the radiologist was able to comment…[Read more]

Thanks for that snippet, Clara. Very supportive!

I think the experience for patients and those who love them is necessarily very different, so we all do what we need/can to make it work best for each of us/them.

Good luck next week.

Best wishes
Jet

All the time, Bridget! This whole experience is an ODD thing, innit?

I say just notice and celebrate it – it's what makes us so special! LOL!

Jet

Aha!

Thanks to Dai, Debs and Min for clarification. To be honest, all these figures are a bit meaningless to me and I've decided not to get too bogged down with it all. When the consultants/nurses smile and say things are going in the right direction, then I smile too. That's good enough for me for now.

The rest is just a matter of managing…[Read more]

Hi Eve

Sorry to hear you've had such rubbish treatment. You moan away, especially if it helps! 😀

My biggest moan was waiting for the flippin' drugs from the hospital pharmacy. First I was told 45 mins to 1 hour wait, which is fairly standard, on hard uncomfortable benches, with back pain, fatigue and already tired from blood test and…[Read more]

Ignore – mistake

Good luck with the Revlimid, Mike. I've found it's not a particularly nice drug in terms of side effects, but it is the NEW thing and the reaction I got from my nurse when I was randomised for Revlimid was very positive. And it seems to be working well for me!

It seems that they're basically trialing it at the first stage of treatment to prove…[Read more]

Hi Kay

Your post made me laugh out loud. Thanks! It reminded me of my first days on the drugs.

When I was first diagnosed, they immediately put me on Dex before any of the other drugs… I guess because I hadn't yet been told about or agreed to the trial.

Like you, I was totally hyper. Unlike you, I was in hospital without proper internet…[Read more]

Hi Dai

I will be there on Sat, with a friend. I am very fortunate in that I live a brief 5 mins away from the Village hotel, so if it does get too much in terms of information overload, or fatigue, I can just nip home. I doubt I will though.

I'm being treated at Nottingham City Hospital, so know the two doctors and both nurses (just not met…[Read more]

I'm amazed how low everyone else's PP figures are compared to mine. All well under 100 and seriously 1.8 must count as negligible!

To be honest, I'm more interested in how I feel on a day to day basis, e.g. with pain, energy and appetite. I just go with the flow when it comes to the medical/clinical aspects, trusting my doctors to lead the way…[Read more]

Hi Eve

Yes, it does seem to be such an individual disease. and dosage decided based on blood and kidney results. I don't think my Dex or chemo drugs are different to "the norm". But for Revlimid, I have been told that my dose is lower due to my current (poor but improving!!!!!) kidney function.

I currently take 15mg Revlimid every other day,…[Read more]

So sorry you have such a bad experience, Bridget.

I also have taste problems, which is possibly the most distressing of all side effects and the worst effect on my "quality of life", but I put it down to the Revlimid, not the Dex. Hmmm…

Hi Mark

I am 49 and was diagnosed on 4 Feb this year. I don't have any tumours, but do have kidney failure. I think they probably caught it quite early. I'd had back pains, loss of appetite and fatigue for about 6 months, but no idea it was anything too serious. As everyone else has said, MM is known for being a very individual condition, so…[Read more]

Hi Gaye

I've never written to any of my doctors, apart from a note to my GP asking her to complete a form for me, but I always call my GP and consultants by their first names. It makes me feel like we're in this together, like they're my friends who just happen to have a medical degree. Like Jo says, it just confirms they're human… and maybe…[Read more]