[mhnevillParticipant]

I echo Debs' comments.

You must be feeling angry as well as overwhelmingly sad. Life does seem very unfair at times, and it seems so unfair that MM takes so long to diagnose.

Please be assured of my prayers too.

Mavis

[mhnevillParticipant]

Hi Shirley

I am so pleased for you. Long may the remission last and what great news for you and your sister. Both of you were brave to go down this line of treatment.

All blessings to you.

Mavis x

[mhnevillParticipant]

Hi Bridget

Sorry you are having such a hard time. do hope things start to get better soon. You are such a fighter and a real encourager to others.

God bless.

Mavis xx

[mhnevillParticipant]

Hi Keith

Hang in there! Isn't it difficult trying to drink so much liquid. I don't like the tast of water so am becoming quite an expert on low cal squashes! Isn't it odd when we find ourselves monitoring ourselves by the colour of our wee!!!!
Do hope you settle down on the Velcade and that it helps your numbers.

Very best wishes.

Mavis

[mhnevillParticipant]

Dear Em

Can I also welcome you to the site. Sorry your father is having it so rough, but one thing about being in hospital, hateful as it is, it does mean you are right under their noses and they will want to get things going.

One thong about this site is that you can be honest about how you feel.

All best wishes to you and your father. Hope to hear some better news from you soon.

Mavis

[mhnevillParticipant]

Dear Gaye

Have just caught up with these posts. So sorry you are having such a rotten time. I'm sure that in an earlier post you said you were awe of folk. I am certainly in awe of you.

Do hope the RT works well for you.

Love.

Mavis x

[mhnevillParticipant]

Hi Angie and Clara

Sorry for the need to welcome you to this site.

It does seem that things are moving very quickly for your parents. I do hope they feel happy with the pace of things.

All best wishes to all of you.

Mavis

[mhnevillParticipant]

Hi Tanya

Welocme to this Web site, sorry it has to be. So sorry about yoour Dad.
My only daughter has two small children and lives in London, I am in Yorkshire. I know that she can't do much apart from keeping in touch and visiting about every couple of months. Fortunately i do have a husband, but he hasn't brilliant health himself. I thnk we have to be willing to have other help which means having other people in the home. Something I think men find more difficult.

I do hope things go better than you hope. Would re-inforce the advice to insist that your Dad gets pain relief that works. Sometimes you have to keep at it.

Do keep in tpuvh with the list.

All best wishes to you and your Dad.

Mavis

[mhnevillParticipant]

Hi Keith

So sorry you are having trouble with veins on top of everything else. I've been there and have the tee shirt! You are right, it does depend who is doing it. I always wonder why the plebotomists, who get paid very little, in the scale of things, always seem to find a vein first time! My highest score was 15 tries!

Do hope the chemo is going well and the side effects keeping to a manageable level. You are always so encouraging to everyone else.
Let's hope that eventually they do them all by injection, even if it means a long wait for phamacy etc.

Very best wishes.

Mavis

[mhnevillParticipant]

Dear Sharon

So sorry you are having such a bad time. Having RT isn't easy when you have such a bad back, even when it is to help things long term.

Before i had an op to remove a plasmatoma from my spine (T12) I was also bed bound, being hoisted onto a badpan is great fun!!! The strange thing, I found, was that after I started taking steroids, which I think is the dreaded "dex" all my pain went. Of course, because I was on Hospital, not yet diagnosed with MM, I just took what they put my way, eight little tablets. It was like a miracle. I do wish it could do the same for you.

I was awed by the skill of the Consultant that removed my tumour, but am glad that you aren't having to go through that.

All love.

Mavis

[mhnevillParticipant]

Hello Angie and Clara

Welcome to this site which I have found so helpful. I am sure you will too.

Best wishes to your Mum, Angie, and I think it is your Dad, Clara.

Blessings.

Mavis

[mhnevillParticipant]

Hi david

I'm very glad you opened this thread because for all my reading i can't make sense of the different readings. My Consultant just gives me the para protein level and I was just told, when originally diagnosed, that my bone marrow just showed traces of protein. I have been trying to make sense of all this – especially as I read the American site "Myeloma Beacon" and they seem to go overboard with blood readings. I wondered if I should as the Myeloma UK Diary does give space for keeping all the readings!

Maybe it is something we could ask the Myeloma Publication to tackle – how the various readings relate to each other, what they really mean in the different situations we all experience. What i need is a book like the "Idiot's Guide" I have with various computer programmes!!!

Keep asking the questions.

Very best wishes.

Mavis

[mhnevillParticipant]

Hi Gavin

I was very interested in your decision to go ahead with treatment. I can imagine it was not easy to decide being in not too disimilar position.

From all I read about the dreaded MM it seems the important thing is to make the decisions that seem right to you. It is good that you have got onto a Trial as you will be very closely monitored. Also, you will feel you are doing something for the whole MM community – for that, thank you!

All very best wishes for the next months. Do keep us all informed of how things go. We will look to hear good things.

All blessings.

Mavis

[mhnevillParticipant]

Dear Jen

I'm very grateful for your answer, and so promptly. It gives me a much better prospective on things.

I feel for you having to cope on your own. I am very fortunate to have a husband who does all the cooking and fetching and carrying, as I also have chronic arthritis, which was what masked my MM in the beginning.

I do find this site so helpful and I have also booked to go on the Information Day, in Bradford, in March. I hope I may meet up with some of you who post then, although most folk seem to be based around London or in the North East.

Hope you manage to stave off treatment for a while longer. Do let us know how things go and whether they do eventually put you back on Velcade.

All best wishes.

Mavis

[mhnevillParticipant]

Dear Jen

Just picked up this strand. Sorry I can't help you as I haven't had any chemo yet, but do hope you get the second dose yuou want as it agreed with you.

Can you help my learning? What was the first regime of chemo you had, which didn't agree with you? Also, what numbers of para protein jogged your Consultant into action on each occasion? My pp is currently 7 and I am hoping thet, if it keeps at this level in the immediate future, I can hold off having chemo. Your input will be welcome.

All best wishes to you.

Mavis

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