[mhnevillParticipant]

Hi Sue

Just posting to ask how things are with Michael. I do hope and pray that as you approach Christmas there is something to look forward to.

Much love.

Mavis x

[mhnevillParticipant]

Hi Shelly

Thank you for taking the trouble to post at what must be a very sad time for you. I'm so encouraged that your Mum coped so well with all the treatment. How long did she live post diagnosis?

I know your continued contributions to the site will be welcomed.

Very best wishes to you and all your family.

Mavis x

[mhnevillParticipant]

Hi Dai

This C Diff seems to really have got you "on the run"! (Excuse the humour!!) So sorry it keeps coming back. It's this downside of antibiotics that they keep warning us about. We do need another breakthrough like when penecillin was discovered. I wonder if there is research into this?

Glad you are soon to be back driving. I know, for me, it is like being let out of prison now I can drive again. This last couple of weeks have even seen me being able to get into the car and out without help, so this is real liberation. Hope the runs soon get under control so yo too can take advantage of the bright days we have been having. We had a day in Ilkley on Wednesday, for me, it was as good as a holiday as it was so long since i have been able to manage it. I am getting a dab hand with my electric scooter which makes shopping possible again. Just at the right time with Christmas coming. DO hope you will be able to enjoy sme of these things soon with Janet,

Much love.

Mavis x

[mhnevillParticipant]

Hi Sarah

I had six rounds of CDT and this banished the PP completely so for the time being my only treatment is a four weekly infusion of Zometa for bone strengthening. Like your Mum, I have decided not to go down the SCT route and feel very comfortable about it.

You don't even have to get down to zero PP to be able to have a drug free period so keep looking forward. I'm now getting toward three months post CDT and am feeling better every day.

All best wishes to your Mum and you!

Mavis x

[mhnevillParticipant]

Hi Andy

Like the others, I am gutted thst you can't find a donner match. However, I'm glad the drugs are working. The donner transplants don't sound like a walk in the park, so maybe, with your battered bone marrow, going other routes may not be such a bad thing, IF they can find a combination that whacks the blasted MM into touch.

Very best wishes to you and Steph.

Mavis x

[mhnevillParticipant]

Hi Sarah

So sorry you and Henry are experiencing the down side of the NHS just at the time when you need it to be at its best. I know that feeling of frustration and feeling powerless to change things.

I really admire Henry for keeping on working. I do hope you don't have finacial pressures as well as everything else.

I do hope and pray things change for the better soon.

Much love.

Mavis x

[mhnevillParticipant]

Hi Vicki and Colin

Somehow I have missed all your batles witht he SCT thus far. Just wanted to sign on and say that I do hope things get steadily better for you and that a really long remission make it very worth while. I have just been reading of one of nine years.

Lots of love to you both.

Mavis x

[mhnevillParticipant]

Hi Jo

Good to hear news of you! Do hope this next round of treatment gives the old MM a run for its money!! They keep saying that MM is on the verge of becoming a chronic disease let's hope it is for us even if it is a real drag at times!

Much love.

Mavis x

[mhnevillParticipant]

Hi Carol

Just caught up with this post. So sorry to hear that you have relapsed. What we all dread. Never the less you sound as if you are coping well now you have got over the initial shock. Well done! I do hope the PAD works well for you. From all I've read, I wouldn't worry that you are putting off thughts of having another SCT after such a bad experience last time. With all the new drugs coming on board there seem to be lots of other options.

Much love.

Mavis x

[mhnevillParticipant]

Hi Kerry

Sorry Melvion is having such a hard time of it, and you too, as you give him such wonderful support.

Is there the possibility of another Surgeon, elsewhere, doing the operation on Melvin's spine? We have some marvellous ones at LGI (Leeds) They did the operation to remove the tumour on my spine (T10 I think) and built some racking to support it. I then had 10 shots of radiotherepy. While I was in hospital I saw some miraculous results of surgery on others.

All best wishes to you both.

Mavis x

[mhnevillParticipant]

Hi Babs

Welcome to the Site, but sorry you have had to join it! You are well on with the journey, and should be able to get planning now for some enjoyable happenings. None of us would chose life with MM, but we are all committed to making the best of our lives as we can, and we can spur one another on.

Lots of love.

Mavis x

[mhnevillParticipant]

Hi Kes

Welcome from me too, and as others have said, we are all here to support you all we can.

Goodness, as you have got through to round five of CDT you are doing well. Those last weeks go very quiclky. I remeber counting the days off: nineteen, eighteen etc!!! Just be warned you could have a bit of a dip as the chemicals work their way through your system. I did, and am only just really getting back to something like normal two months later.

It is very natural to feel low, but as Dai says, things are so much better for us MM suffers now, even than since I was diagnosed 2 years ago.

Are you going on to a SCT? I didn't. If you are, because it is quite a gruelling procedure you may be as well to see if you could get some counselling support, seeing as you have been so low in spirits.

Is there a Support Group near to you or are you near enough to one of us to have a visit? There isn't a Support Group in Bradford and I would have found this an extremely lonely journey were it not for this Forum. (THANK YOU ALL SO MUCH!!!!!)

What are your main physical symptoms? Can any of us give you any advice about those?

Finding new things to occupy you is difficult. I am working on this. I am wondering about getting an Ipad so I can watch "TV catch-up" on it, read books and play games. I have also started a small Slimming Group in my home and am thinking what other Group would appeal to my retired neighbours.

Do keep coming back to the Forum for support.

All bast wishes and love.

Mavis x (aged 67yrs! Have you seen the Under 50s Section?))

[mhnevillParticipant]

Hi Sue

So glad to hear Michael is now home. I lit a candle for Michael, at church this morning, and prayed for a miracle that you could all have some lovely days together.

Love to you all.

Mavis xxxx

[mhnevillParticipant]

Hi Sue

Couldn't sleep well last night – unuisual for me, so was thinking and praying for you and Michael a lot. Do hope Michael is calmer now. It is a time when he could naturally feel frightened. Hope you are able to spend time with him, – and perhaps other members of the family. Is it your daughter in the photo with you?

Lots of love to you all – and all blessings at this most difficult of times.

Mavis xx

[mhnevillParticipant]

Hi Eva

How do you get on the myeloma listserve? I haven't heard of it before,

Lots of love.

Mavis x

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