[mhnevillParticipant]

Dear Briget

I have been getting a new computer so have been off line for a couple of days. I'm devastated to hear your news and angry for you. You have already had such a difficult year which you have coped with bravely while continuing to encourage others.

One thing, you are a fighter and it is good that you have got a medical team you have confidence in. I will pray they make some good decisions for you.

Glad Dai mentioned other possibilities to Revlimid. I feel certain you are going to get through this very rough period. I will be rooting for you and praying. God must be getting used to me getting angry with him on behalf of my friends.

Much love.

Mavis xxx

[mhnevillParticipant]

Hi Gina

It's good to hear your GP is looking out for you dear Mum. It isn't always so. Do hope she can come home soon and the news is good. Do let us know.

Love to you all.

Mavis x

[mhnevillParticipant]

Dear Sarah

I'm also pleased so many people turned out to wish Gordon farewell. I agree with Briget, it really does show how much he was respected and admired.

You have a wonderful family. I do hope that you find comfort and support for each other in the difficult months ahead.

Thank you to the family for their fund raising on behalf of the Myeloma family.

Hang on to the fact that Gordon's love continues to surround you.

God bless and keep you strong.

Love.

Mavis x

[mhnevillParticipant]

Hi julie

I've been interested to hear of your journey as i also started mine with a tumour! What are your para protein levels at teh moment. I have been wondering if they wait until you get to a certain level if nothing else too dreadful occurs. I am going to ask my Consultant in September.

I trust you and your husband have many more years to spend time in Spain!

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Min

All the best to Peter.

Interesting what you say about "I might get angry"! There have been a couple of ionteresting blogs on the American Site "Myeloma Beacon" about the experieinces of hospitals and how we do have to be the people who are alert to the risks.. Maybe Peter would be better off at home if they can't give him a room on his own post SCT, which is what he should have.

The Blogs also said how important it is to have someone looking out for you. Thank goodness you can do that for Peter – like about the drip.

All best wishes for these next difficult weeks for both of you. Hang in there both of you – it will be worth it!!!

Mavis

[mhnevillParticipant]

Hi Eve

I join everyone else in saying I do hope the Velcade works for Slim and without any serious side effects.

Hang in there through the Dex highs and lows – you are a wondeful carer!

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Gaye

Also thinking of you and praying for you. Do hope they have got that pain under control and that you can be comfortable in bed!!

Much love.

Mavis x

[mhnevillParticipant]

Hi Ted

Can i also say happy many returns of yesterday!

I am not hqving any active treatment at the moment – only taking bone strentheners, because I have problems in my spine.

I am 66, but if i had got to 80 without any treatment I should certainly think twice about starting any unlees it was absolutely neccesary and the old MM was progressing fast. In your case i doubt that that will happen. I do hope not. Do you take multi vitimins and vitimin D to help prevent infections?

Very best wishes.

Mavis

[mhnevillParticipant]

Dear Dai

Do hope this week's Velcade goes better for you, that the leg continues to improve, and that you get a good run upto your holiday. Surely it must be your turn to have some good luck.

And to Brigit

Do hope you too get over this tiredness phase. Mind you ,having had so much pain lately is bound to have taken it out of you.

Love to your both!

Mavis x

[mhnevillParticipant]

Hi Susannah

just to say that I hope Michael shakes off this infection and can resume the Trial soon.

Look after yourself. I know how much regular Hospital visiting took out of my husband.

Best wishes to you both.

Mavis

[mhnevillParticipant]

Dear Gaye

When I first came on the site i appreciated your posts and your support of others.

I do understand the decision you have made. Everything I read fills me with admiratin with what you all endure to prelong your life and to give this b….. MM the best fight you can. I am sure a time comes when enough is enough. I am glad you are being well looked after. I do hope the Hospice will let you stay till the end.

I do hope and pray that these days will be peaceful and as painfree as is possible for you. I firmly believe this life isn't all there is. I hope you can find some comfort in such thoughts, but, even if not, pray that you can come towards the end of your journey with heartfelt thanks for all that has been good in your life, and for the courage to battle so long.

So sorry things have worked out this way.

Much love.

Mavis x

[mhnevillParticipant]

Hi Pam

I add my sympathies to ohers. I am just glad that your father didn't have to suffer treatment for MM which would have diminished his quality of life further.

I am glad he had a peaceful end and is now free of pain and at peace.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Dai

At least you know what you are dealing with. Glad it hasn't travelled any further. Sorry about the Walfarin and stockings though.

As you say "upwards and onwards"!

Mavis

[mhnevillParticipant]

Hi everyone.

I found Dr Berenson's interview very interesting, particualrly as i have always said i wouldn't want to go down the road os SCT – because of my age and other non MM health issues, BUT mainly because of quality of life issues.

However, it was interesting to have seen this interview at this precise moment. Reading Jet's Blog of her SCT has almost made me feel maybe I could do this! Not heard from jet today – do hope she is still keeping OK.

As my PP was 12 least Hospital visit and everything else was stable, I am hoping not to have to make this decision, or to start CTD for a good while.
I feel almost mean saying this when so many of you are going through so much.

I am now taking iron tabs twice a day, courtesy of my new GP, and continue to take Bonefos. However I am wondering if I should be asking to go onto Zometa. Anyone any views? I read it is the NICE recommendation for newly diagnosed MM patients.

I can't believe it is eleven months since I was diagnosed and I wouldn't like to do those eleven months again with the spine operation and radiotherepy, but, having said that, I went to the funeral of a dear friend yesterday, who was younger than me, who was diagnosed with oesophical cance after me. There is no telling in life.

Although I'd rather not be a member (!!!) you are a marvelous bunch. I had the strange experieince of going to a service at a healing well a few weeks ago, in Thornton in Craven, while taking the water i prayed for you all.

Thursday I am taking a small service of Holy Communion, from a perching stool. This will be the first time since I had to retire as Priest in Charge in Steeton, North Yorkshire two months ago and return to our adapted bungalow. I will be holding you all in my heart at that service.

Love and best wishes to you all.

Mavis x

Mavis

[mhnevillParticipant]

Dear Dai

Sometmes I despair when I hear what messes happen. But silver lining of seeing the Prof is that precious two week break to look forward to.

Hopefully after the appointment tomorrow they will be able to add something to the treatment for the leg. I do hope the swelling goes down before Pembrokeshire!

Very best wishes.

Mavis

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