[mhnevillParticipant]

Hi Gill

Like everyone else I was very touched by your Post and your courage doing that long drive and finding such a fitting resting place for Stephen's ashes. As Dia says, it will be something to draw you back to your lovely French home. And what a vision you have for it -I can feel it and I'm certain you will have much joy in finishing off your place in your way. I think you will enjoy the challenge in a sad but happy way if that makes any sense.

I'm sure in four or so years time you will wonder where you got the strength and determination to do what you have done! You have already been a rock for Stephen, now that strength is for you and for continuing to establish your new, different life.

Lots of love.

Mavis xxx

[mhnevillParticipant]

Hi Annette

So sorry to read your Post, but glad you and your family are with Dad for these last hours. It will be such a comfort to him, and to you later. If you read this, do keep talking to your Dad even if he doesn't respond. They say that hearing is last faculty to go.

I firmly believe death doesn't have the last word. Hope you have something to hold onto, even if it is only that love never dies.

Lots of love to all the family and my prayers for you all.

Mavis xxx

[mhnevillParticipant]

Hi Mandy

I have had this for some time and it has been worse in this hot weather. I also got cellulitis ( red legs and very sore). Four lots of anti-biotics haven't completely chased it away.

Perhaps our legs, and their circulation, are a bit of a barometer of our general well-being.

Keep cheerful.

Mavis

[mhnevillParticipant]

Hi Jean

Agree with the others press for an MRI scan. I'm surprised they didn't offer it. I had spinal cord compression because of a plasmacytoma and was very lucky to regain my mobility. They have now given me a card to carry so that if I have symptoms like Mike's they will be taken seriously.

Good luck.

Mavisb

[mhnevillParticipant]

Hi Dai

How odd about your disappearing Post! I thought I had read this before.

Hope things continue to go as smoothly.

Love.

Mavis

[mhnevillParticipant]

Hi Maureen

So glad you at last have some good news! Roll on Ian's homecoming.

Love.

Mavis x

[mhnevillParticipant]

Hi Pauline

So sorry Marc has this other problem to deal with. As his SCT isn't for another couple of months, isn't there any way you could have a week or so without any treatment so you could have a holiday? There are obviously difficult days post SCT so hope you can manage some quality time.

As Eve said in a different post, you have to try and stop MM completely dominating your life! Easy to say but harder to do, but worth the effort.

Love.

Mavis x

[mhnevillParticipant]

Hi Georgina

As your Dad's pain is mainly in his hips are they sure it is all myeloma pain? Has he had any arthritis? I found all the pain wasn't controlled by morphine etc when my pain nurse said I probably needed to also get back on anti-inflamatories. I di, eventually could come off the Oxycodine and have been much better. Stiil pain but manageable. I know they aren't keen on anti-inflamatories because of the kidneys, but in the end I decided I needed some quality of life now. As it happens, so far, my kidney function hasn't worsened.

Best wishes to your Dad.

Mavis

[mhnevillParticipant]

Hi Jackie, again!

Piggy backing ob Eve's posting, have you come across Jet's Blog? In it she suggests listing 50 things you want to do before you die. I haven't been able to list 50 yet, but am working on the ones I have. It is a way of focussing the mind and gives you something to work towards.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Anette

Sorry you and your Dad continue to have a very difficult time.

As I've said before, do try and make each day as good as you can. Hopefully the infection will abate a bit and you can share some happy memories of past days together.

Well done for keeping so strong and as a eve says, you are doing the most precious thing for him that you can, which is being there on this last difficult journey. You being there for him will help him keep calm and less fearful.

Lots of love and prayers for you both that when the time comes death will come as a gentle friend.

Mavis x

[mhnevillParticipant]

Hi Carol

So sorry that you are feeling down. My CDT took six cycles to bring me into full remission. I had heparin injections all through it. Not on waferin.

Good news for you is that post CDT you will have Velcade in reserve for if/when you relapse. That's hoe I look at it as I am 68 (65 when diagnosed) and I have decided not to go down the SCT route. Don't want to give up 6/9 months of quality life for what might prove to be only a short remission. I feel with so many new options coming on stream – three since I was diagnosed, I will take my chances. But, of course, it is a very personal choice. I had other health issues so feel I have enough to cope with without self imposed suffering!

Hope things go well for you. I am always amazed at how quickly time passes. I'm sure you will get home soon – maybe in time for Christmas.

Love.

Mavis x

[mhnevillParticipant]

Hi Tom

Just wanted to send you my positive vibes too! At least the days are passing. Do hope that as you have the "better" sort of C diff you don't suffer as badly or for as long as Diane.

Here's to a long remission.

Love Mavis x

[mhnevillParticipant]

Hi Jackie

Do read Dawn's post in "General" on coping with emotional effects of MM and follow link to Mindfulness. It is an interesting idea as I have been following it.

It easy to allow the thought of MM control all your reactions to life always waiting for what might be next. But let's face it no one, even those without MM don't know how long they have left of life. All any of us is today. The more I can live like this the better life is.

Do hope life can get better for you. How are things in the rest of your life? Perhaps the core of the problem isn't the MM but something else. Be kind to yourself. After all, treatments for MM aren't a walk in the Park. What have you had?

Very best wishes.

Mavis x

[mhnevillParticipant]

Hi Eve

Glad that Slim seems to have turned the corner for the time being. Do hope clots haven't done any longtime damage AND that the treatment does some magic for Slim.

We are planning to go back to Luxembourg again in four weeks. My daughter is looking into their version of the Access Bus so hopefully we will get into the city this time. My daughter isn't confident enough to drive there yet although she manages well around the countryside.

Keep strong Eve. As you say, one day at a time.

Love Mavis x

[mhnevillParticipant]

Hi Dawn

Thank you for this. I shall enjoy reading it. Instead this is how I try to live, but the reality is often miles away.

Love to you for your journey.

Mavis x

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