[mhnevillParticipant]

Hi Jules

As others have said, Don't give up and be along with your mum as she battles against this wretched infection.

Lots of love.

Mavis x

[mhnevillParticipant]

Hi Scott

Glad to hear your are now in the "next" phase of recovery post SCT. Hopefully you will soon hear those words "full remission". Look after those kidneys! Hope you are drinking plenty …. bet you wish it could be something stronger than water!

Best wishes.

Mavis

[mhnevillParticipant]

Hi Catherine

I am sorry for your Dad's diagnosis and the need for you to join us on this Site.

I agree with Eve and David, you will get specific advice from Ellen on the MUK Helpline, but be assured that your Dad's responses to the chemo are quite normal. The combination of drugs do make you tired and lots of people have a difficult response to the steroids.

It is unfortunate that your Dad also has a broken shoulder to cope with, but again, the good news is, bones do heal.

I am the same age as your Dad and have been diagnosed for three years. I am now in remission following chemo and I didn't have a Stem Cell Transfer (SCT). This was by my own choice.

All best wishes for Uni. I'm sure your Dad will just want you to get on with your life and would be mortified if his MM disturbed your chances. I find that having a positive attitude does make a difference so your Dad has this going for him as well as your love and support. Regular phone calls telling him what YOU are doing will be a real boost for him.

Do ask any questions you like and one of us will try to help.

As David says, don't despair. Even in the three year's since my diagnosis several new powerful and effective drugs have come on stream. More are in the pipe line.

All very best wishes.

Mavis x

[mhnevillParticipant]

Hi Mari

It sounds as if you had a really great celebration of Stephen's life. I am sure that you found it very comforting to realize just how many, and how much folk appreciated Stephen. This was the last thing you could do for Stephen. I am glad it it was so special.

Lots of love for the coming days.

Mavis x

[mhnevillParticipant]

Hi Christine

I'm so glad to hear the news about Chris. It just goes to show and I'm sure it will encourage others. Long may this phase in his MM last!

So glad to hear your son did so well in spite of everything going on.

I know what Chris means when he said,in Paris,he could forget MM. While we were up in the Lakes last week I said to my husband "I don't feel as if I have a terminal illness!" Good to be able to put it on back burner from time to time. I think that is why some folk disappear from the Site when they are in remission.

Love to you both.

Mavis x

Keep strong both of you.

[mhnevillParticipant]

Hi Andy

I am so glad you are going off to Greece. Do hope the sun does miracles for you. Do hope the back op does the trick.

So agree we must do things while we can. We are off to Luxembourg for the third time in October. I want my grandsons to remember me as someone they could have fun with even though my mobility is so limited.

I love your slogan "every day is a gift – use it!". It encapsulates my philosophy so well. It is a shorthand way of reminding myself of it.

Blessings to you and all yours.

Mavis x

[mhnevillParticipant]

Hi Tom

Thank you for sharing all this.

Saw Sachi on the Andrew Marr show and he has a Bill going through Parliament to allow Consultants to try experimental treatments on terminal patients. Let's hope it succeeds. It would enable terminal patients to access these drugs in advance of Trials if they were willing to accept risks.

We all need to travel hopefully.

Mavis

[mhnevillParticipant]

Hi Eva

Good luck in your decision making.

Love.

Mavis xxx

[mhnevillParticipant]

Hi Dia

Just got back from holiday and saw your post. ( A very wet one in the Lakes! But as you can guess nothing could take away the thrill of being away.)

Sorry the Velcade is taking its toll, but, as you say, it is a means to an end. As you said in response to another post, there are so many new options on the horizon if you can just keep on hanging in there. If anyone can it will be you. I just crave some quality of life for you.

Love to you and Janet.

Mavis x

[mhnevillParticipant]

Hi David

You really must be peed off! Not without good reason. It is so unusual for you to be anything else but very positive.

I do hope they get you sorted out soon! I'm glad you are going to the Quality and Care meeting. We need to make sure things improve. It's why I have joined our GPs' Forum.

Hope the treatment goes well and does the trick.

Love.

Mavis x

[mhnevillParticipant]

Hi Sonya

Just to say hope all goes well for your father in law. It is wonderful that there are so many new drugs now. So many been developed in the three years since I was diagnosed.

Best wishes, hope the new treatment works well.

Mavis

[mhnevillParticipant]

Hi to all of you from me too. I have just been away so just catching up!

This is a great Site. Do ask any questions that occur to you. Someone will no doubt be able to help.

Lots of good wishes.

Mavis

[mhnevillParticipant]

Hi Barry

I haven't had an SCT so don't have anything to add on that score, but just wanted to welcome you to this wonderfully helpful and supportive Site that all of us wish we didn't have to join!

All best wishes for your continuing progress and for a very long remission.

Mavis

[mhnevillParticipant]

Hi Frances

As Tom says, it is very difficult to distinguish between arthritis and MM. I was diagnosed after a fall which isn't usual in MM.

I have lots of aches and pains, increasingly so, but it is the regular blood tests that show progression.

One thing that strikes me is, have you ever had a full body series of xrays? Because my aches and pains are increasing I am going to ask for one next time I go to the Consultant. This will show if I have any more lessions (weak spots). I have been on ZOMETA for over two years so I am hoping not!

It is hard not to worry,but I try to keep MM to the back of my mind.

All best wishes for many years of smouldering!

Mavis

[mhnevillParticipant]

Hi Gill

Just wanted to add my admiration and my best wishes for what you are attempting. Yes, Stephen's presence will certainly be willing you on. Rest in some lovely memories of special times in your special place.

Lots of love.

Mavis xx

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