[mhnevillParticipant]

Hi Lisa

Welcome to the site. Hope all goes well with your Dad's treatment.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Polly

You came into this MM battle in a similar way to me although I managed about 17 months before I had to start treatment. I had six rounds of CDT which knocked the PP right back, although I haven't been really cracking since the treatment finished about three months ago. I coped very well during the CDT – hope you do as well. I gave myself a heperin injection everyday and it didn't worry me at all.

All the very best. Do keep asking questions. I got shingles during CDT so do be watchful.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Andy

Just wanted to say Good Luck with finding a match for the All0 transplant. I have been reading about Jet's experieinces and admire those of you who decide to go down that route.

I am jealous of those of you who manage to meet up with others from the Forum, via your various hospital appointments or in a Support Group. It feels really lonely here in Bradford. In over two years I have only spoken to one other MM sufferer. Had I not had my set back in March, I was thinking about setting up a Support Group here, but haven't got the emotional energy at the moment. But who knows for the future! I do thank God for all of you on the Forum.

Lots of love.

Mavis

[mhnevillParticipant]

Hi Kerry

From all the reading I have done, and various chats with my Consultant, I get the impression that "Staging" isn't really very helpful as a way of us working out prognosis for our MM. Some people can have heavy symptons and go on and on, and other folk can seem to be doing well and then an infection takes them off.

I do wish Melvin all the best in his personal battle and feel sure no one is trying to keep anything from you. Just keep asking the questions!!

Lots of love.

Mavis xxx

[mhnevillParticipant]

Dear Vicky

So sorry your Dad has lost his battle againgst the terrible MM. MY sympathy to you, your Mum and all the family.

Lots of love.

Mavis x

[mhnevillParticipant]

Dear Ann

Just wanted to add my sympathy at your loss of John. What a blow for you and the family. You would have every right to be feeling very angry at the unfairness of it all. I just hope you can hold on to all the great memories you must have of your time together.

Much love.

Mavis x

[mhnevillParticipant]

Hi Helen

Just caught up with this thread. Sorry you have been feeling so under the weather. I'm not surprised. I remember when my daughter, then three, had whooping cough, we were up nights on end boiling kettles for steam to help her breathe! Youn ARE a tough cooky to have been working through it all. I hope your employers appreciate what a gem they have got in you.

Lots of love.

Mavis x

[mhnevillParticipant]

Hi Sarah Jane

Welcome from me. I am not on a Trial, but have just has basic CDT, but wanted to write and say that I didn't have any bad response to Dex so obviously some of us get lucky. I have had other problems, but that's MM for you!

All best wishes as you adjust to this progressive diagnosis – hope the drugs do the trick for you as for so many others.

Love.

Mavis

[mhnevillParticipant]

Hi Etta

Glad you have got through your 100 days post SCT so well. It must be difficult for you to contemplate going back on treatment again. I hope that what folk have contributed is helpful. Are you going to go ahead with it? Presunably you get to give your view.

Best wishes and love.

Mavis x

[mhnevillParticipant]

Hi Keith

So glad you are feeling well in yourself, in spite of the low blood results. This is what is important isn't it!

Keep well. Best wishes for next week's readings.

Mavis

[mhnevillParticipant]

Dear Rachel

I was devastated by the news of Paul's death and my heart goes out to you. I had missed it because I don't usually visit the under 50's!

I always felt Paul was a near fellow traveller as we spent 33yrs of our married life in Calderdale. We only moved to Bradford to get adapted housing. As others have said, Paul was always so supportive. I always found his posts so helpful.

Love to you and all Paul's family. I am so sorry you didn't have more years together.

Mavis x

[mhnevillParticipant]

Hi Emma

Welcome from me! You have had so much good advice from the others that there is not more than I can add, but wanted to say hello. I can sympathise with where you are coming from. I am 67yrs, diagnosed two years ago, and have one daughter and two young grandsons. Kate worries so much about them not knowing me as they grow up. Me, I'm hoping for many more years. I had six cycles of CDT finishing a couple of months ago. My PP are now nil and my bloods are near normal. I am not going for a SCT.

About pain. I have had advice from the pain nurse and take two OxyContin 30mg daily and these cope with the arthritic pain, but not the bone pain in my back. I am now trying diclafenac but not having too much success. I do find the Pain Team really great. Has your Mum spoken to them? The RR will hopefully help.

Do travel hopefully.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Kate

Glad to hear you are still battling on wothout needing any more treatment.
Good to hear from you again.

Love,

Mavis x

[mhnevillParticipant]

Dear Dai

I am so glad you have at last got through what has obviously been a most horendous episode in your battle. How is it that we can see the very best AND the very worst of the NHS! You wonder if the Policy Makers really appreciate what it is like on the ground. If only we had the collective emotional energy and clout to do something about it. Sadly, we can just about find energy to fight our own day to day battles.

I know we will all be rooting for you as "The Wedding" approaches. You and Janet, as well as the rest of the family, deserve a wonderful day.

I know what you mean about feeling a sense of your own mortality. I have been feeling this lately. The death of John Blackburn, (who I have written about in the "End of Life" Section,) really hit me, as I had just got to know him, via email, this last couple of months. And I hadn't even caught up with the news about Paul. That is a blow as he was so young and previously so active. (Where was this news posted? I completely missed it.)

A friend was encouraging me yesterday to just take "a day at a time", but even with the strong faith I have, I find it hard at times. Like you and lots of others, I just crave some days where quality of life feels really good. YET, why am I grumbling?

Yes Dai, good to have you back online. Your contributions are always so special and such an encouragement.

Lots of love to you and Janet. God bless you.

Mavis x

[mhnevillParticipant]

Hi Mike

Just wanted to welcome you to the site which none of us wanted to know about!!

All best wishes for the Trial. Glad you have so much faith in your Dr. it does help.

Look forward to hearing good progress.

Mavis

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