[mhnevillParticipant]

Hi Andy

Sorry your journey is proving a long one, but at least you are bashing those PPs down.

Keep up the good fight. We are all rooting with you.

Best wishes.

Mavis

[mhnevillParticipant]

Congratulations Wendy!

May this be the first of MANY MM free years! Thanky you for being ready to share your experiences.

Love Mavis x

[mhnevillParticipant]

Dear Pat

We all know whgat a horrible time it is waiting for diagnosis and, unfortunately, with Myeloma, it seems to go on and on!

Sorry you have had to join our group, but hope you find as much support from it as we all do. It is true, you do have to rely on your friends at this time. Aren't we lucky to have good friends and colleagues who are there for us.

All best wishes and welcome.

Mavis

[mhnevillParticipant]

Hi Ange

Like everyone else I am sorry you have had to join us. It is very confusing that MM is such an individual disease and it is sometimes particularly confusing if you have high para protein levels but still don't need treatment yet. This will be because you haven't any organ or bone damage. I do hope this situation lasts for a long while.

All very best wishes.

Mavis

[mhnevillParticipant]

Dear Dai

I'm glad you have the emotional energy to take up your complaint this time. So many of us let it go because we can't face the effort needed.

I think some of the weakness inb the system, which allows things to be so dirty, is the division between nursing and cleaning staff, and the division between cleaning staff and staff who collect rubbish. I used to get really frustrated as my ward never seemed really clean and tidy. I think some of the reason I didn't complain, is that the nursing staff were so willing to help me in other ways.

I also think the whole question of medications needs a thorough overall. It sounds as if many hospitals have the same problem. I went three days without my blood pressure tablet because it wasn't "written up"! When I reported it to the Staff Nurse, she said it didn't really matter!!! I wondered why I was on it then! Having said all this, this last time I was in hospital was the best I experienced for getting pain relief when I asked for it.

Oh Dai, I do hope things are improving for you. I keep sending you positive thoughts and prayers.

Best wishes.

Mavis x

[mhnevillParticipant]

Dear Gill

Like everyone else I am sending good wishes and prayers for you and Stephen. I am so sorry you are having such a difficult and distressing time. I do pray that you find some solution soon. Bless you for your courage.

Lots of love to you both.

Mavis x

[mhnevillParticipant]

Hi Dai

Do hope, that at last, you are really beginning to feel you are winning. I am so sorry that you have been fighting the staff as well as the condition. Why does it have to be so difficult. I often think we would be better organinsing our own meds!!

Best wishes and all my love.

Mavis x

[mhnevillParticipant]

Hi Tina

Have a lovely holiday – you deserve it. I do hope the weather is kind to you.

Lots of love as you prepare for the next stage of the journey.

Mavis xxx

[mhnevillParticipant]

Dear Vicki and Colin

All best wishes as Plan B looms.

Mavis x

[mhnevillParticipant]

Dear Scott

All the best as you go down this new route. I always feel grateful to those of you who are trialing new pathways before the rest of us.

All best wishes for all those trips to hospital!

Mavis

[mhnevillParticipant]

Dear Gill

Hope things continue to go better for you and Stephen.

Dear Eliz, thank you for information about hoist. I am now working on Gordon to give it serious consideration, but you know what men can be like!

Best wishes to all.

Mavis x

[mhnevillParticipant]

Hi Angela

Sorry you have had to join our "merry" band and that you are having to cope with a hip replacement as well as MM.

I have had four hip replacement operations! I had an infected hip so had to have one replacement in two stages!! It is a very straight forward operation. I had all mine by epidural which isn't half as frightenining as you'd think. If you'd like to ask any specific questions about the hip op or follow up, do feel free to email me on mh.nevill@btinternet.com or ring me on 01274 813584.

In any case, all best wishes for your SCT. I have just finishes six rounds of CDT but am not having SCT.

All best wishes.

Mavis x

[mhnevillParticipant]

Hi Gill

I am so glad that things aren't so grim for Stephen as first feared and that the radiotherepy is offering some hope of considerable improvement.

I do hope Stephen is able to get back driving soon. I have jsut begun driving again after five months. It feel very liberating. I have got as far as 20 miles on one trip. Unfortunately I do need help to get into the car, but hopefully will eventually be able to be able to cope on my own.

Next hurdle is to be able to get my electric scooter into the back of the car. Although it breaks down into five parts Gordon hasn't been well enough to lift it in and out yet. I am thinking about getting a hoist fitted. Has anyone got experience of using one?

Very best wishes to Stephen as he continues his treatment. Hope the radiotherepy doesn't make him too tired. Tiredeness lasted for several months with me.

Mavis x

[mhnevillParticipant]

Hi Tina

I am just over a week over six rounds of CDT. I still feel very tired, especially in the evenings, but I'm glad to say I am sleeping OK, apart from toilet stops!!

At least my taste is coming back, but, unfortunately, I am having problems with my teeth! Have been to the Dentist twice. If things don't improve I am going to have to be referred to the Dental Hospital because of the Zometa. My face is loosing some of its roundness, but my middle is still very bloated.

I am working at getting more mobile, but battling against back ache which my consultant says is the result of lesions in my spine. I have the pain nurse coming next week to see what might be the best way forward. I think all the sitting down isn't helping my back or my feet and lower legs which are very tight and sore.

I'm glad I haven't got a SCT to face, but send you all my best wishes for yours.

You are right, it is a lonely path facing MM. I don't know anyone nearby who also has it and I haven't met anyone on my trips to the Chemo Unit – all sorts of other cancers, but not MM. I have just bought and read John Blackburn's book "Sense of tumour" which I found inspiring. I am going to be transferring hospital soon, (to Bradford Royal Infirmary,)to be seen nearer home, so maybe I will meet someone there.

Hope things improve for you soon.

Love Mavis x

[mhnevillParticipant]

Dear Keith

Sorry that you are having to cope with the glucose discrepancies as well as the MM. Diabetes is a horrible complication I do hope your specialist can offer some helpful suggestions. It is hard to keep our spirits up when things are so difficult. Difficult for those around us!

Hope things get better for you soon.

Mavis

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