[mhnevillParticipant]

Hi everyone

I'd like to say how much i have appreciated all your postings and have already learnt a lot from you all. I do admire the courage you all show as you move on in your treatment regimes.
May you all know something of the joy and peace of this Christmas season and be surrounded by those who love you.
My special thoughts and prayers for Roz and Michael and David.
Love
Mavis x

[mhnevillParticipant]

Dear Bridget

I have just caught up with your disappointing news and you are always so encouraging to others. As a newcomer I have been impressed by your posts.

I do hope that the infection has responed enough so that you can have a reasonable Christmas.

I am sorry about the failure of the velcade, but having been reading so much about this dreadful MM I have taken encouragement by posts on the American MM site (Myloma Beacon and Patient Power) which have brought lots of hope to folk who have failed sveral regimes, yet still found something that eventually worked.

Do take care even your new friends, like me, are routing for you.

All blessings at this special time of year.

Mavis x

[mhnevillParticipant]

Dear Roz
So sorry thigns are moving to a very sad end after such a bravely fought battle against MM. I am so sorry that your own physical problems make supporting Michael as you would hope, so difficult, but i do believe you will be given strength to do this and I know that the positive thoughts of all your friends here will be helping you to do this.
Love and prayers for you, Michael and Andrea.
Mavis xxx

[mhnevillParticipant]

Hi Shirley
Just catching up on site and saw your posting.
All the very best for your SCT. Strangley enough just read an article about how good it is for young MMs to have one. Will be thinking of you and will look out for news of how you are getting on.

All blessings.

Mavis

[mhnevillParticipant]

Hi David
Glad to get clarifiaction about your postings. Even glader to hear that you are going home today. Go well and enjoy your escape. Just nice timing to regain some strength before Chrsitmas.
Warmest of best wishes.

Mavis

[mhnevillParticipant]

Hi David
You may not be posting but we will all continue to be remembering you.
Love.
Mavis

[mhnevillParticipant]

Dear Roz
My heart goes out to you. You are in that dreadful situation of almost beginning to grieve the loss of Michael before it happens. Of course you will be feeling "I want my husband!" You will also worry away at whether you could have stopped him having more treatment which, in the event, hasn't worked and which has resulted in this confusion.
Do try to be kind to yourself. You have only ever wanted what you felt was best for Michael, as you do now. It is this aweful disease that is doing these terrible things to Michael.
I do hope that the Specialist Nurse is coming to the appointment with you on Tuesday – is this tomorrow? It seems to me that you need to make it clear, that if Michael is to come home, you can only manage if he isn't on treatment, and if you are provided with sufficient support in your joint Care Plan to make it possible for you to cope. If they are able to do this. you could find you have some really special and precious days with Michael before you have to say "good bye", but you will need help.
My thoughts and prayers are with you.
Love
Mavis xx

[mhnevillParticipant]

Hi David
So sorry you have had this bad dip. Good job you are a fighter.
Still, it is nearly two weeks till Christmas so you should be well home by then and look forwarde to something better than toast!
I say a little prayer for you when I wake in the night.
Blessings to you and yours.
Mavis x

[mhnevillParticipant]

Hi again, David

Everything is relative isn't it, and I can't believe you are now giving yourself happiness rating 7! Do hope you are headed home soon because after a long stay it does feel like an "escape" and even if it is a bit scary without the immediate help at hand, it always feels good to be in your own place.
My prayer is that, by Christmas you are feeling so much bettter that you can really appreciate it.
Mavis.

[mhnevillParticipant]

* Dear David

Coming back to site after a couple of days it was really good to see you are upto writing your blog again even if you still are faily low with all the side effects of the treatment.

We are still all here cheering you on. Hopefully you will turn the corner soon.

All best wishes.

Mavis

[mhnevillParticipant]

Dear roz

I have been follwing the ssad time you and Michael have been having. My heart goes out to you. I realise how distressing it must be for you that, because of the state of his illness, Michael doesn't realise how much you are trying to do the best for him. Do put it down to MM and not to anything you have done.

I feel very sad that it seems as if you may be near to the end of this journey that has been so painful for you both. You will be given strength to cope just hold in there. You msut be strong to have coped this long, and to stand alongside Michael fighting this horrible disease, and the fact that Michael is phoning at strange times shows who he turns to when he is at rock bottom. Take some comfort from that, even if these conversations do lead to misunderstandings.

It seems to me that what Michael needs now is medication to bring his pain under control. I will pray that Drs will make right decisions for him and that you are granted the strength you need.

Do hope you get some rest this night.

Warmest thoughts.

Mavis

[mhnevillParticipant]

Hi David

Well, six is more than half way up. And as you say, it's important to be honest with yourself and knid to yourself when, naturally you will be feeling sorry for yourself.
Shame I can't be paying you to loose some weight for me! Enjoy the toast. It was the treat of the day when i was first admitted to my local hospital. The only decent food I got all day. When I moved to Leeds GI they didn't run to it!! I really misssed it.

Knw we all continue to route for you and look forward to more posts when you are upto it.

Blessings.

Mavis

[mhnevillParticipant]

Hi David

Just to let you know that my thoughts and prayers are with you as are everyone else's.
One thing about "down", the only way is "up" and from evrything of yours I have read, I know your strength of character will get you there in time.

Till then, let all our positive thoughts help carry you and yours.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Kevin

As a new girl i want to add my good wishes and commiserations to evryone else's. The willingness of you "old stagers", as it were, to share so honestly is a real help, believe it or not.

I do pray that something else is out there for you. I keep reading about these new treatments for refractory MM (hope I got the term right!)
Trouble is, this illness does constantly make you think of your own mortality, but it seems as if, the amount of fight and positivity folk have really does make a difference, and you obviously have that Kevin.

All blessings.

Mavis

[mhnevillParticipant]

Hi Sandie

I empaphise with your mother as I too feel really well at the moment, in spite of having had surgery and being diagnosed in Sopt/Oct this year – my paraprotein reading was 10. I am interested that you Mum's Onc has recommended treatment even though she doesn't ahve any other symptons.

As i have said in another post, I am not keen to be made ill with side effects when i don't feel ill at the moment and while I can be monitored to see that things don't take a turn for the worse. However, i may be living in cloud cockoo land, and may find myself on a tratment plan in the New Year.

Best wishes to you and your Mum. I know how much joy I got by struggling down South to a family Wedding in the summer. The last long journey I did before MM! Not likely to do another for a whil, so my philosophy is do things while you can!

Mavis

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