[mhnevillParticipant]

Hi Dai

It was very interesting to hear the beginning of your MM journey, having known you so long "in the ether", as it were! You still don't seem to be completely lucky in the level of care you receive, even having made a move of location. I had an dreadful hip consultant, who could be "brother" to yours! I think they thought they were auditioning for the role of "God"! In order to be able to escape from him, I had to take along a friend, who just happened to be one of the hospital social workers, along to the consultation. For 18 months he had sworn my hip wasn't infected, in spite of all the evidence. Of course, by the time it was diagnosed it meant a complicated two stage replacement. Ho, ho, as they say!! Yes, everyone has a story!

Hope your latest treatment is now going well and you are, at last, keeping free of infection.

Love.

Mavis x

[mhnevillParticipant]

Hi Ner

So sorry that you Mum has such a bad introduction to MM. Has anyone said anything about an operation to remove the tumour, or are they just relying on the radiotherapy? I had an operation and then racking put in to support my spine. in my case this was followed by the radiotherapy. I didn't start any more treatment for another year, apart from Zometa for bone strengthening.

I do send all best wishes for your Mum and all the family. She is very young. I was 65 on diagnosis.

Love.

Mavis x

[mhnevillParticipant]

Hi Norma

Just wanted to say all the best for Monday. I do hope you don't get the news you fear, but, if you do, we are all here to support you.

Very best wishes.

Mavis x

[mhnevillParticipant]

Hi Tina

I wonder if losss of appititite is one of the longterm efffects of CDT as I haven't has a SCT, but still have no real appitite. I feel sorry for Gordon who cooks for me.

The only up-side of it for me is I have lost some weight and kept it off. However, I find not eating a balanced diet doesn't help the constipation!

Do take care and keep fighting!

Love Mavis x

[mhnevillParticipant]

Dear Andy

Just to say all the best with the continued treatment. Do hope you are both ablt to enjoy your planned breaks.

Best wishes.

Mavis

[mhnevillParticipant]

Dear Pheobe,

Like the others, I would like to thank you for your inspirational story and to wish you and your husband many more years free from full blown MM.
All these stories of infections are so scary. It is interesting that the Government is now taking the subject so seriously that they are encouraging the development of new antibiotics. Let us hope and pray the scientists are successful

All best wishes.

Mavis

[mhnevillParticipant]

Hi :Dai

Who would have put odds on you getting through round three, a few months ago! I admire your determination.

I go back on Zometa tomoorow, after four months off for dental work. Like you, my veins can be very difficult, but I am travelling in hope!! I only had shivers on the first cycle, nothing since, and as mt last back X-ray showed "no lesions", having been told my bones were full of holes a year ago, it seems the infusions do really work. Glad you are on board with them now as they say they ALSO have an anti MM effect.

Enjoy the break in treatment. – and the singing.

Best wishes.

Mavis x

[mhnevillParticipant]

Hi Jackie

Just wanted to welcome you and your Mum. Sorry you've had to join us. It does all sound so grim at diagnosis, but at least they are on your Mum's case. I'm sure she will do well. The important thing is to stay positive – there is lots they can do.

Best wishes to all the family.

Mavis

[mhnevillParticipant]

Lots of love Sue

Will keep you in my thoughts and prayers. You must have been very proud of Charlotte. Aren't we lucky to have a daughter. I love mine to bits, even if she and the family are about to go and live in Luxembourg.

Take care, be patient with yourself, you are on a long, sad journey.

Mavis xxxx

[mhnevillParticipant]

Hi Sandra

I'd forgotten that I had shingles while on CDT and it was very painful – round my middle. Still get a tightness, but nothing to worry about.

Take care.

Mavis x

[mhnevillParticipant]

Hi Paul

Sorry to hear your news. Keep fighting.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Jane

Sorry to have to welcome you. How wakeful for your daughter to be having to cope with the dreaded MM twice – unbelievable.

No one has said much about the side effects of CDT so I thought I.'d add a bit.

I had six rounds. I had no side effects from Dex, but did find food tasted really strange. I found I preferred things with strong flavours. I didn't lose any hair while on the drugs, but it went very thin afterwards. I'd recommend lots of conditioner and some products called "Aussie". It took me about three months to get anything like normal. The good news is, I am in remission now. I am not going down the route of an SCT because of my age and other health considerations. However, if you do, there are lots on the Site who will given you good advice.

Yes, keep positive and be kind to yourself. You must have said something like this to your patients, now it's your turn to look after yourself.

Love from Mavis x

[mhnevillParticipant]

Hi Tom

What's all this talk of not living till 67! I am counting on you still being around then to keep us all smiling!
We all need to travel hopefully don't we.

Re DLA, I got it for very severe arthritis, before I even knew what MM was (happy days!") also, am now over 65 . It was a struggle to get it then, but has been a life-line to me. I feel for anyone claiming today. I think you are all right – you need to be nearly dead already, and preferably bed bound. As I said to a Police Officer, about to book me for "Obstruction" , for parking in Skipton, on a yellow line with still room for two cars to pass, "you'll get old one day!" Those making current policy will also be old, or ill one day. ( By the way, a Traffic Officer came along and let me off with a warning!")

Keep cheerful and keep fighting everyone.

Love Mavis x

[mhnevillParticipant]

Hi Liz

It is so good to keep getting good news. Trust Kevin's light chain readings continue to fall fast!

Keep at the fight.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Tom

All the best for your second cycle. Will enjoy looking at blog.

Very best wishes.

Mavis

[Author]

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