[mhnevillParticipant]

Hi Dai

Like everyone else I am delighted that the Rev and Dex are doing the trick. Long may it last. So glad the pain is already coming under control – that will make life so much better. You sound much more like your old self.

Very best wishes and prayers.

Mavis.

[mhnevillParticipant]

Hi Joe

Well done for going back to Uni. Very brave of you and bound to be difficult. Do be kind to yourself. Of course you will have times when you feel tearful – it shows how much you cared for your Dad. You can't just airbrush him out of your thinking. Expect this to go on for a good while. Iy is quite usual. It would be a very very hard person who didn't react in this way.

Glad you are looking out for your Mum too. Is she into texting? A very short text can be very comforting.

Lots of love.

Mavis

[mhnevillParticipant]

Hi Janet

Like everyone else, I am sorry that your remission seems to be fading. One thing about "forgetting" to ask "what next?" is that you aren't being rushed into a new decision but have time to think about the kind of treatment you might prefer.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Bridget

You sound as if you have had more fun and games. As if you don't spend enough time at Hospitals! Glad to hear your grandson seems to have saved his teeth. It is a big thing.

Glad it sounds as if you are keeping the pain at bay. I know it would be a bit uncomfortable but couldn't they give you some modern version of a back board to reduce the risk of damage to your spinal column? Can't think this is the first time they have come across it.

I know what you and Helen mean about missing work. Last sumer I retired for the third tme! No. 1 from my career in Community Education and 2. & 3. from two parishes as unpaid priest in charge. I went back to my last church yesterday to open the new disabled access. I think God must have a sense of humour! I parked in my usual place to take the shortest path (disabled slopes are always longer!) but it meant doing four steps – something I had always managed with the help of one of my crutches and the hand rail. Yesterday, because of my bad shoulder, I couldn't put pressure on hand rail, so ended up going the long way round anyway! At least I could say I had christened it before I prayed over it!!!

I rang up about dates for my xray survey and BM biopsy this morning. The Consultant was going to ring me. Three hours later her secretary said she couldn't find me on the system. It's all because I'm "Nevill" without an "e".

Happy days!

Love Mavis xxx

[mhnevillParticipant]

Hello Teresa

Glad Stuart clarified problem with Posts. I thought Moderator had taken against everyone's photo!!! Anyway, welcome to the site.

Don't know if I have got this right? You use "we" so do you and Peter both have MM? It seems very unlucky to have so much of it in your wider family. I guess most of us on here hadn't heard of it till we were diagnosed ourselves.

Sorry you have had such a bad time. Have you watched the various Webb Casts on Myeloma Foundation?

Hope they sort something out for you soon to give you something more to hope for.

Love.

Mavis

[mhnevillParticipant]

Hi David

Hope these unpleasant side effects soon wear off.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Andy

All the best for tomorrow – give it to them!

All best wishes.

Mavis

[mhnevillParticipant]

Dear Nicola

Just caught up with your very sad post. If they have put your Dad on the pathway the end must be near. I do hope he goes gently, suurounded as he is, by those who love him.

May God bless you all. You are in my prayers too.

Much love.

Mavis xxx

[mhnevillParticipant]

Dear Gem

Thank you so much for taking the trou8ble to answer me in such a difficult week. I do hope your Dad's funeral was a fitting clebration of his life.

Love.

Mavis

[mhnevillParticipant]

Hi Amelie

Sorry John's remission didn't last longer, but those two good years must have set him up well for the next SCT. Here's to a very long second remission. Do keep in touch.

Love to you both.

Mavis x

[mhnevillParticipant]

Hi Andy

Just wanted to add my best wishes for the new treatment. As they pump all these drugs into you, just imagine them kicking the pesky* MM cells into touch, and let's hope it does the trick.

* Wanted to use much stronger word, but thought it might not get past the moderator!!

Love.

Mavis

[mhnevillParticipant]

Hi Eliz

Thank you so much for your encouraging post and your encouragement. Do hope things go well for you on your MM journey.

Love.

Mavis

[mhnevillParticipant]

Hi Nichola

Like everyone else, I am so sorry to hear about your Dad's disappointing response to his treatment and his loss of morale. It is understandable, but if yuo all continue to surround him with love, and show him you don't give in, hopefully he will begin to get some fight back.

I think, sometimes folk do know "when their time comes", BUT it is also true that feeling depressed can also bring on similar feelings.

Do hope new drug regime begins to show some results. Look after yourself.

Love.

Mavis x

[mhnevillParticipant]

Hi Penny

Have you looked up Allo Transplants on the Myeloma Beacon (USA) Web site. I feel I read quite a lot on there.

You are very brave to be considering this, but I guess, if it presents the best hope…. Jet's comments were very encouraging about the lady who seems to have had a cure.

Do keep us in touch.

Best wishes in your decision making.

Love

Mavis x

[mhnevillParticipant]

Hi Kay, Tina, Helen and Dai

Thank you for replying and especially Dai saying it beat his MM back so quickly. I guess I could tolerate four months "in hope"! Common thread seems to be tiredness and dex days!! Typical when I was just wanting to be licenced as an Associate Priest in the parish we have retired to, and hoping to start a Bradford Myeloma Support Group.

Dia, do hope the dex will do some good for you. I remeber when I had it, when having my plasmotoma removed from my back, it took away all the pain. I couldn't sleep though, but put it down to being in Hospital. Four weeks without sleep!! You can imagine how glad I was to come home.

My Consultant hasn't come back with dated for full body xray and BMB as she said she would, but at least it gives me time to see if I can improve my kidney function by taking lots more water.

Trouble is, because of the creatine figures, she has said to stop taking diclafenac, which is the only drug that seems to cope with the underlying pain of my arthritis, so life isn't all that great at the moment as I can hardly move. Perhaps she is right, and some of the pain is MM related, but I can't help noticing that lots of folk on here have lots of pain even while on pretty agressive treatment.

Still, I am determined to keep positive especially as so many of you are having very rough times at the moment – Brigett and Dai especially.

Lots of love to you all.

Mavis xx

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