[mhnevillParticipant]

Dear Bridget

Sorry you still have to wait till tomorrow for the first RT. The fact that you are to have four sessions sounds like they are really taking it seriously and hopefully will knock this terrible pain on the head once and for all.

Much love – hang on in there.

Mavis xxx

[mhnevillParticipant]

Dear Sarah

I am so sorry to hear of your father's death so soon after Gordon's. I can see that you must be completely numb. The secret to getting through the next difficult couple of weeks will be to take each day at a time and try not to think too far into the future.

Will be praying for you.

Much love.

Mavis x

[mhnevillParticipant]

Yippee indeed Dai!!!

I am so so pleased for you after all the difficulties (they would let me put cr–!) of the last few months. Like everyone else I wish for you a very very long remission and a very well tolerated last two treatments.

Hope you don't disappear from the site as i value your posts.

Here's to music.

Mavis

[mhnevillParticipant]

Dear Helen

Glad to hear you are on the way up post SCT, even if it is a long haul. Good luck with the hair – I can understand what you are saying about that.

Strangly enough, this morning, at an early MacMillan Coffee Morning, I sat next to someone who had had chemo post breast cancer. She had been given an ice cap to wear while being infused and it stopped her loosing her hair. Is this ever considered for MM sufferers? I had never heard of it.

Do take care and make steady progress – here's to a long, long, long remissikon to you and all the other recent post SCT-ers!!!! (Has anyone heard from Jet?)

Love

Mavis x

[mhnevillParticipant]

Hi Min

Sorry you have so much to sort out. My husband, who used to be in banking, says that unfortunately you will have to get the Account put in your name only. Sorry, I guess it makes it feel so final. Perhaps it might help to think of the new Account, in your name, is one of the gifts Peter left behind for you.

Keep strong. All love.

Mavis

[mhnevillParticipant]

Dear Debs

So frustrated for you about the cancellation. I sometimes wonder if they realise what it does to get a letter like that.

Hope the Tens machine does some good.

Love

Mavis x

[mhnevillParticipant]

Dear Bridget,

So sorry the pain is still so bad. Hang in there, It's nearly Wednesday with high hopes for the RT from us all.

Love and blessings.

Mavis x

[mhnevillParticipant]

Hi Keith

Good to hear news from you. Sorry about the infection, but hope you make steady progress now.

All best wishes.

Mavis

[mhnevillParticipant]

Welcome Sandy

All the best for the SCT.

Mavis

[mhnevillParticipant]

Hi Barbara

Welcome to the site although I'm sorry that your diagnosis means you need to. Good that you don't need treatment yet – I hope this phase lasts for a very long time for you. How was your MM diagnosed? I'm interested what you para protein level is now. Having had a tumour removed from my spine and radiotherepy I am not currently having any other treatment than Bonefos. My para protein is now at 12.

Very best wishes to you.

Mavis

[mhnevillParticipant]

Hi Nadine

I'm sorry to have to welcome you to this site on behalf of your Mum. I am sorry for all the shock you and your Mum must be suffering from.

As someone a bit nearer your Mum's age, I'm 66yrs, may I put a slightly different perspective on things.

I gather that there are indications from tests that show whether results of SCT and other treatments are likely to be more or less successful in terms of remission period and overall survival. As SCT is a very debilitating procedure, because of the high dose of chemotherepy needed to kill off the MM, and it takes a long period to re-couperate, it is worth finding out what response your Mum's consultant would hope for. You need to be sure that you are not giving up the possibility of reasonable quality of life for the next 9/12 months without a strong hope of gaining many more months of remission.

At your Mum's age, because there are now very effective new treatments the question needs to be asked, particularly if she has any other health problems either seperate, or because of MM.

Of course, if your Mum is otherwise very fit, and the Consultant is very optomistic of a very good outcome, all the demands of SCT are no doubt worth it. For myself, I'm not keen to go down that road. As your Mum's team seem keen to take her down this road, presumably their answer to your question about outcomes will be re-assuring.

All very best wishes.

Mavis

[mhnevillParticipant]

Bonjour Gill! (Just!)

Hope the Improvers Class is a happy group and you have lots of fun.

Mavis x

[mhnevillParticipant]

Hi folks

I love the fact that I'm still alive!

I love the fact that there are people here who are willing to give of themselves even when they are really going through the mill themselves.

I love the folk who are researching with such passion to find a cure for this dreaded MM.

I love the fact that there are those – quite a few- who love me and worry about me. I love good friends who make the effort to keep in touch.

When you think about it folks. life still has a lot going for it … back to my first love!!!!

I love the fact that I have the gift of faith and the gift of a "half full" approach to life.

Love to you all!

Mavis x

[mhnevillParticipant]

Dear Roz

I am so sorry that you haven't been able to get the help you have needed, especially that Cruise has such a long waiting list. Hope you are onit any way – at least your turn will come eventually and you can decide then if you still want to take it up.

Do be kind to yourself and don't beat yourself up – even after nine months it is very easy in terms of bereavement and especially as you had had a long journey with Michael being so poorly before he died.

A lot of people who loose loved one after a very debilitating illness find it difficult to get that picture out of their minds and so it works against being able to get strength from good memories.

I do believe we can retrain our inner selves, but it takes time. If either every morning, or night, you look at a favourite picture of Michael, then look into the mirror and say something like "now Roz, don't you remember how happy we were when this picture was taken and don't you know that Michael wants you to be happy again!" If you can keep this up over several weeks you will be re-programming your mind and your memories. If you have any faith, you can pray for strength to do this.

You had a long time as a couple so it will take a long time to feel anything liked mormal again, but, with time it will happen.

Love never dies and so the love that michael had for you still surrounds you and can work for you if you can let it. I am glad you have had a good cry – crying is helpful as long as it doesn't lead to depression.

You will come out of the dark tunnel. You have been so brave over these past years for Michael – now you need to be brave for yourself. you can do it and it will be worth it. Michael will be wanting you to make something good of what is left of your life.

I know that this is a long post, but do hope it sparks at least a small flame of hope. I will pray for you. Do you have nay close family or froends to support you?

Love.

Mavis x

[mhnevillParticipant]

Hi Sylvia

So sorry to hear that after responding so well to the intial tratments of Velcade, and having so little side effects,that you have plateaued. As your PP is only 11 is there any chance of them leaving off further treatment for the time being till your numbers start to rise? I am sorry they are saying your MM is agressive although I'm sure I have read that it doesn't necessarily affect outcomes. I do hope that eventually they decide on another way forward that isn't too traumatic.

Of course yopu are entitled to feel down for a while, who wouldn't with this horrible MM, but keep fighting on, because you have stood up to the treatment so well it must bode well for whatever comes next.

Very best wishes.

Mavis

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