[mhnevillParticipant]

Glad to hear that Velcade is working for Mike. Probably helps to make the bad temper bearable!

Hope your holiday gives you both a much needed rest.

Best wishes.

Mavis

[mhnevillParticipant]

Hi Philip

What a bumber !! This sure is a peculiar disease and there sometimes doesn't seem to be any rymne or reason why things happen. Hang onto the fact that your blood readings are Ok and let's hope the tests come back with nil results and that these are just strange symptoms which will pass.

Keep cheerful.

Mavis

[mhnevillParticipant]

Hi Tom

It is good to have good news stories on here as well as ones sharing difficulties. I think it must really encourage newly diagnosed members so please do keep coming on!

May your remission continue for ever!

Mavis x

[mhnevillParticipant]

Dear Jo

So glad to hear Velcade has done good for you! Here's to another long remission.

I am still doing well and off to Luxembourg, complete with electric scooter, next Saturday! Prayers appreciated!

Love and prayers.

Mavis xxx

[mhnevillParticipant]

Hi Mari and Steve.

So sorry that Steve's second SCT didn't work. Do hope Revlamid does the business when he gets on it. Don't despair, there are lots more options coming available.

Thank you for your honest sharing. Like Jo I didn't go down the SCT route.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Anthony

I'm interested in your question and Helen's reply. I often wonder if my Myeloma is connected to the fact I had to have a double hip revision, including a bone graft, following infection in a previously infected hip which my Consultant denied for over 18 months!

But in the end, I decide, I can never really know! Maybe it was the hair dye! Vain woman that I am!

Do hope things go well for you. I haven't gone down the SCT route. I had CDT drug treatment for six cycles starting 18 months after treatment. I am now in remission, but still lots of back pain.

You will find lots of help here if you ask,I have.

All best wishes to you.

Mavis

[mhnevillParticipant]

Hi Richie

Welcome from me too. Sorry you have had to join the Site on behalf of your Mother. It does sound like the end of the world when you are diagnosed with Myeloma, but as you go on, you realise all is not lost! There is a lot of help and support out there and there is hope.

While your Mother is in hospital they will no doubt decide on a treatment programme if she needs one straight away. Not everyone does. When you know what they plan there will be lots of people on here to explain and share experiences.

Things are so much more hopeful for Myeloma patients even than when I was diagnosed nearly three years ago. You don't say how old you're Mother is.. I am 68 yrs!

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Annette

I am so sorry your Dad has progressed so swiftly and for you seeing it and feeling the pain alongside him. As Eve has said, there is no sure answer to " how long?" I have walked this journey with many individuals in my role as priest, and I know just how an uncertain walk it is. I agree with Eve that you could do with getting help lined up for when you do need it, either at home, or in the Hospice if your Dad can avoid being admitted to Hospital. Is he in a great deal of pain? If so are the Palliative Care team helping?

Do make sure you get help when you need it. I remember from someone else on the Site that they as career had to make the running to get the help when they were in your position.

Making memories is important as is "saying goodbye" to friends and family to many people. Is there anything special your Dad would like to do before the end that you could make possible? One of my neighbours was able to take her husband to their favourite local beauty spot the day before he died. That has always meant a lot to her.

Love and prayers.

Mavis x

[mhnevillParticipant]

Hi Chris and Christine,

Keep hanging on in there.

Hope your Son's exam go/went OK.

Love Mavis x

[mhnevillParticipant]

Hi Andy and Steph

You are both an inspiration!thanks! Making the most is the key isn't it. Yet I found myself loosing it the other evening. I had dropped my sticks for about the fourth time and was surrounded by dropped papers. I just felt so angry I couldn't do ordinary things. I should be used to it by now as I had bad arthritis before I started with back tumour and the dreaded MM!

Still, all that was just a blip and yesterday, for the first time for several years I took part in two services with help of crutches and perching stool! Soall is not lost. We just need to " live. In the day", but easier said than done. I feel very lucky to have the gift of faith, it still doesn't make for an easy ride, but it sure holds me up.

Do keep enjoying your breaks and enjoy this English sub too!

Love

Mavis x

[mhnevillParticipant]

Hi David

So good to hear the Velcade is doing its magic!

I took the chance and renewed my Passport. I had to have a new photo and with no glasses and no smiling I look like a corpse, but what the hell! Just a fortnight now and we are off to my daughter in Luxembourg. When I ordered my Passport it felt a real act of faith, but I'm so glad I did it.

You get yours renewed I'm sure, post Velcade, you will use it lots.

Love.

Mavis x

[mhnevillParticipant]

Hi Helen

So sorry things are so difficult for you. It isn't fair that the service is so poor and the waiting area so uncomfortable.

I know that both Chemo Clinic I have attended were refurbished by private fundraising! I have just transferred to Bradford Royal Infirmary for my infusions. The Haematology Day Unit is very well organised. Whenever possible your drugs are waiting for you. Amazing thing is, I know it is small, but I have yet to meet another Myeloma patient!

I do hope you are feeling better soon.

Love Mavis xxxxx

[mhnevillParticipant]

Hi Tom,

Just wanted to wish you a smooth a road as possible and a full remission as a result.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Anthony

Haven't anything to add to what others have posted but just wanted to say WELCOME from me too! Sorry you have had to join us.

I always write down the questions I want to ask the Consultant so I don't forget any!

Best wishes.

Mavis

[mhnevillParticipant]

Hi Helen

I thought I'd come back to you on this thread! I think I missed this because I haven't been on so much. I feel bad because, as I have been feeling better I didn't want to be reminded of Mm all the time. I always remember how Bridget was so faithful supporting everyone in spite of how I'll she was getting. It is a challenge isn't it! I am saddened how many more folk are joining the Site. I am now finding it hard to keep up with everyone's story. People like you, and other long timers are special to me because I have appreciated all your support.

About carpel tunnel, by the way, I had injections in both wrists and over a number of weeks they have been completely cured. I then had two. Injections for clicky fingers and they too have been very successful. I feel like I have been given new hands. Just a thought they might work for you. It would be one less thing to cope with.

Do hope the Velcade doesn't cause too many complications and that you don't lose your hair.

Would you have other interests if you gave up work? I think it must be time to seriously consider finishing. Can you get you pension enhanced if you leave on health grounds? I know things have changed with schemes since I finished.

Take care. – lots of love.

Mavis xxx

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