[mhnevillParticipant]

Hi Tom

Just caught up wit this. So sorry you got this news, and just before Christmas. Still like everyone else, I know you’ll kick it into touch again. And what advances those four years have bought. Think of the Velcade Three bravely battling to get it available for all, then the injection rather than infusion, and the other drugs. It sounds like some interesting things are coming out of this year’S ASH as the result of Trials.

We do appreciate you so much.

Lots of love.

Mavis x

[mhnevillParticipant]

Hi Nick

Sorry, I haven’t been on for a few days.

I decided not to press for SCT partly because of other health issues, but mainly because as there is no guarentee as to how long a remission it would buy, I didn’t want to spend precious months feeling so rotten for an unspecified gain. Also there are a new arsenal of drugs coming on stream so I have chosen to put my faith in them! HOWEVER, I’m sure I would have made a different decision if younger and fitter.

Like Ted has said, it does pay to learn as much as you can so you can be an active participant in your treatment programme.

Do have a good Christmas in spite of MM, it is one way of showing it who is boss!

[mhnevillParticipant]

Hi Harmony

Happy Christmas. Do hope it is a very special year. One thing about a diagnosis of MM is it does make you value each day. Perhaps in this way, it is one of its gifts!

As Andy says ” each day is a gift, use it well.”

Blessings to you and your family.

Mavis xx

[mhnevillParticipant]

Hi Tracy,

Welcome. Your response to the diagnosis and the treatment is quite normal. MM is hard to come to terms with and an ongoing battle. I do hope that the chemotherapy does its magic for you and that you progress steadily to a very successful SCT. Do be kind to yourself and find ways to make “being at home” more pleasant. I imagine you would find it very tiring to return to work just now.

All best wishes. Keep in touch.

Mavis

[mhnevillParticipant]

Hi Nick

Just wanted to pop in and welcome you to the a Forum – sorry you have had to join us! Sorry you progressed to MM so quickly. How did you get diagnosed?

I just hope you do as well on CDT as I did. After six regimes I have now been in remission since summer 2012. Of my own choice I have not gone down the route of SCT. I am 68 years. I wish you well with all your treatments.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Gill

I’m so glad you have called in to see us. I do hope your plan for how to cope with Christmas works for you. You are the important one in all this. I am glad though, that there will be family around over the Christmas season. They will all be feeling a gap at the table too, as it were.

Do hope you and your best friend can spent some special time together.

All blessings.

Mavis xxx

[mhnevillParticipant]

Dear All

I have tears in my eyes as I write. I feel as if I have lost a very dear friend even if we only knew one another through this site. I have been wondering about Dai, and praying for him, longing to hear some good news, and just trusting that his "farewell" party had been very premature. It seems now that he must have known.

Dai was the father of this Site for me and such an inspiration, and through his posts I came to admire Janet for her never ending support of him. I just take comfort that his passing was gentle and with family. What we would all wish.

I do hope that Dia's funeral is a fit celebration of his life. I wish I was nearer to Nottingham. I was always hoping to hear that Dai had got back to playing. Maybe you will have one of his songs. I shall try and find some on the Web to listen to as I remember the loss of my friend. I know Dai had faith and remind myself that death never has the last word.

Ross, thank you for writing.

My love to Janet and all the family.

Mavis xxxx

[mhnevillParticipant]

Hi Luciano

Just wanted to welcome you to the Site that none of us wanted to join.

I sympathise with your wife. I sometimes think it is almost worse for those who support us. They suffer MM at arm's length as it were.

Do try and do what Ted says, go away and try and live life as normally as possible. As MM so often affects the bones that is probably why the Insurance Companies are saying no to skiing. But if you feel there is no MM bone involvement, keep trying. Maybe your Consultant would give you a letter of support if this is the case.

All best wishes to you both. This is probably the biggest challenge you will face together, but it could make you stronger as a couple.

Mavis

[mhnevillParticipant]

Hi Jaspar

Sorry we have had to welcome you to this Site, but as you are already finding, it is full of helpful people.

You didn't say how your mum was originally diagnosed or how old she is. I would just put another side to what has been said. Because CDT or the Trial alternatives work so well for the majority of people, your mum doesn't have to move, he'll for leather, down the route to SCT. It is a very unpleasant experience, but as people on here who have experienced it say, "doable!" But not everyone gets a long remission. There could be the alternative of harvesting cells for a later SCT if your mum wanted it.
I think age is a factor in making these decisions. I am 68 years and haven't gone down the SCT route. I had CDT and am now 16 months into remission and know there are other drugs out there, more coming on stream all the time, for when I do relapse.

All best wishes to you and your mum.

Mavis

[mhnevillParticipant]

Hi Karen

Your Consultant sounds a bundle of fun! Good job you seem to know how to take her. Glad your readings are all normal! Long May this situation last.

All best wishes.

Mavis

[mhnevillParticipant]

Hi Maureen

Do hope you manage to get a support package in place so Ian can come home next week.

Love Mavis x

[mhnevillParticipant]

Hi Harmony

Somehow I missed your first post. Sorry you have had to join us on here, but welcome any way! I do hope you will be smouldering for many years to come and in the mean time many more treatments are coming on stream. Also, the American "Black Swan" Project just might come up with a cure for the enemy MM!

We all need that fighting spirit, it is what keeps us going.

Sending you love for the fight.

Mavis

[mhnevillParticipant]

Hi Maureen and Ian

Just wanted to pop in to send my best wishes. Do hope that the antibiotics do their trick and Ian's back stays infection free.

Love to you both.

Mavis x

[mhnevillParticipant]

Hi Sarah

I'm so sad to hear your sad news after your mum had fought so hard to hang onto life. She was a brave lady and I'm sure her legacy to you will be the strength to get through this sad time with dignity. I do hope her funeral is a fitting memorial of all the love and friendship she gave to others. I do hope you will take comfort from the number of folk who attend to show their love and appreciation.

Love and prayers.

Mavis xx

[mhnevillParticipant]

Dear John

Only just caught up with this sad news. So sorry you have lost your darling June and so young. There are no answers to the "whys" of such a waste. I do hope that June's funeral manages to be a fitting memorial to all she has given to you and all who knew her. Do try and take comfort in the words of the Service. Death never has the final word. What you had with June will always be with you.

Cry, rant, talk to her photo, anything to get through these next days and weeks, but love, the love you had together, will be holding you up.

God bless you and all your family.

Love.

Mavis x

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