[mhnevillParticipant]

Hi Nicola

I am so sorry that your Dad is having such a difficult time. It must be so hard for you too. I would urge you, while not giving up hope, to take seriously what he is saying. Maybe he has had enough. If things don'ty taker a turn for the better maybe you should be speaking to his medical team about paliative pain control and care rather than looking for yet another medical process. I say this because i can imagine myself wantng this at some stage,

Love to you all.

Mavis x

[mhnevillParticipant]

Hi Bridget

Good to hear from you and that you are on form as usual. I think the thought of you wandering round "Big Brother" in a bikini quite a powerful image!! I bet it would increase their ratings.

I have to say that the extra support side at my hospital is nil. Fortunately I didn't need it as I already had DLA following four ops for arthritis. I was once introduced to the specialist nurse, but wasn't given a card or any contact details. There is nothing up in the Clinic to say how to contact her. Very different from at St James's Leeds where I went for radiotherepy. I get the impression that our Clinic is very under pressure and under staffed.

Could have been spitting blood yesterday. I went to have my zometa infusion and heard one of the senior nurses say to a younf woman patient having her first chemo (I think for breast cancer) "well loosing your hair is the least of your worries"!!!!! I think I could get a reputation as being a grumpy old woman so I didn't say anything, but ……..

Have a good year Bridgret and do hope your new drug regime will be VERY successful.

Love

Mavis xxx

[mhnevillParticipant]

Hello Pilgrim

Welcome to this site! I know you will find it helpful.

I do hope you get a diagnosis one way or the other soon. Do bear in mind that, even if you do, if your protein level isn't too high you need not nessacarily need to have treatment straight away, apart form something for the bones – probably zometa monthly which isn't a problem.

All best wishes. Do let us knpow how you get on.

Mavis

[mhnevillParticipant]

Hi Glen

Welcome to the site that we all say we'd rather not belong to!!! What an upbeat post in view of all you have gone through in the last couple on months. I think we'd all say that a positive attitude really helps. although we'd all admit to down times with this dreaded desease that most of us had never heard of.

Do hoped the radiotherepy on the spine is successful. I had to have an operation to remove a plasmacytoma from my spine as it had wrapped itself around one of my vetebrae and was squeezing the spinal cord so that, finally I couldn't walk. Fortunately it was a success and I am now able to walk, but still with two crutches. In my case I had put the increasing pain and disability down to arthritis. I think that it is the trouble, no one thinks of myeloma as first diagnosis.

It is good that the chemo is bringing the numbers down. I do hope you get into a full remission.

All very best wishes.

Mavis

[mhnevillParticipant]

Hi Kay

Like others I am disappointed for you that your PP levels are rising. I do hope that Friday brings results that aren't as disappointing as you fear. Let's hope you have a good partial response to your SCT.

Do let us know how you get on.

Love

Mavis x

[mhnevillParticipant]

Dear Nicola

I am sorry your dad is having such a distressing time and that you are having to watch while feeling helpless.

Sorry I haven't got any specific medical type advoce to give you, but it does strike me that you need to have an honest conversation with your dad's medical team. Although it is difficult to say it, it would be terrible to put your dad through heavy treatment if there is not a strong chance of success. However, as you will have seen from watching this site, there are many who come back from the brink.

Do badger the medical team and speak to someone who knows what is going on.

Love

Mavis x

[mhnevillParticipant]

Hi David

Hope you have had a great holiday. Thank you for all your positive messages posted this year.

Wishing a continues remission in 2012.

Love to you and yours.

Mavis x

[mhnevillParticipant]

Hi Dai

Thanks for your greetings and a belated birthday wish from me too!

Sorry things are still tough for you. Do hope the PN subsides soon. I can imagine how difficult it must be for you having had some nerve damage in my legs some years ago. It is still difficult to get comfortable at night. Do you take any medication for the PN? I do hope, that underneath all this, the Velcade is doing some good magic and knocking out those dratted MM cells – it needs to be worthwhile for all the side effects you are having. Hope your influenza bout is now over.

A happy, healthy and musical New year to you and Janet.

Mavis x

[mhnevillParticipant]

Dear Michelle

However you may feel you are doing, you are very brave to have got your head round things enough to plan your husband's funeral, but we will all be hoping and praying that this is not the time you need it. Sometimes preparing for the worst is a neccesary part of being able to cope with all the distress and uncertainty.

Love in families is never lost, it is good that your children are loved by you both. That love will give you all the strength you need in the coming weeks.

I will be praying for you both that, having faced the worst possible outcome, things may in fact take a hopeful turn. As Bridget knows, they can pull things out of the hat.

Much love.

Mavis x

[mhnevillParticipant]

Dear Ed

Welcome to this site – know other carers will give you the support you need, but hope you can find some nearer home too.

I am now in the "wait and see" plus Zometa phase and take comfort with every consutation where this continues. I take heart that there are lots of folks out there for whom this phase lasts for years. I remember another member, Tom, saying how difficult it is with this diagnosis hanging over you, and of course this is so, but one good outcome is that it does make you value each day you do have.

Because you are both young there will be specific difficulties to face, but there are lots of younger folk on the site who will only be too willing to share with you both.

God bless all the family in 2012.

Mavis x

[mhnevillParticipant]

Hi Lyn

Just caught up with your posting. Sorry you and Pete have had such a difficult time and then eventually getting the mind blowing diagnosis of MM. It is such a lot to take in. After just over a year into all this I am just beginning to appreciate just how hard it was for Gordon when I was first admitted to Hospital, had emergency surgery and then the diagnosis!! I say this so you won't be surprised if Pete doesn't get it about how you feel – and no doubt you are trying not to show it.

One thing, this does all bring you closer together if you let it and, as someone else said, it does make you value each day.

May 2012 be a much better year for you both.

Mavis x

[mhnevillParticipant]

Hi everyone!

Yes, all the news that comes out, including latest stuff from ASH (See Myeloma Beacon Web Site) is so encouraging. Let's hope and pray we are all in this FOR THE LONG HAUL!!!

Lots of love to everyone for 2012 and many more years to follow.

Mavis xxx

[mhnevillParticipant]

Hi Shirls

Glad you had a good Christmas and that people spoiled you. As others have said – yopu deserve it.

We had a good Christmas. I drove to and from London, from Yorkshire, and was so grateful there was no snow this year as this was the first Christmas Day we have spent with the grandchildren aged 4 and 20 months. We were all so excited as they opened their presents. My daughter, a vegetarian, actually cooked a turkey crown for us!! We had a lovely family time. It was strange not to be taking services over Christmas,
but lovely to go into a packed church, in Charlton, for Midnight Mass, to the smell of incense!

I wish you a very happy and healthy New Year.

Love

Mavis x

[mhnevillParticipant]

Hi Jean and Frank

What a lovely day you obviously had. A good excuse to forget the dreaded MM and the bad time Frank has had the past few months. A lovely picture to bring back wonderful memories in the future. I still enjoy looking at my daughter's wedding photo and it was ten years ago. One of the best days of my life!

All best wishes to you both for 2012 – may it bring better news on the MM front and lots of good things.

Mavis

[mhnevillParticipant]

Hi Helen

Sorry about the infection and the alergy to the wig! What luck. Still, at least your hair is growing – another couple of months and this hard period will almost be behind you.

Amazed that you had energy to cook for so many.

Have a really good year in 2012. May it feel like a new beginning.

Mavis x

[Author]

Posts