Hi Kay so sorry to hear your sct results are disappointing , I dont have any personal experience that would help but I am sending all the positive vibes I can your way Are you on Zometa or Parmidronate? One of these may help your bone pain which a lot of us have and those pains may not mean anything more sinister is happening just a rather…[Read more]

Hi Heather welcome to our merry band ! Good to hear your treatment has gone well so far and I remember that lost feeling after my sct 4 years ago It does get better though but remember you have been through a huge physical trauma as well as having to cope with the news you have myeloma. I was diagnosed 5 years ago after a year of agonising back…[Read more]

Hi Mari I am glad you had a good christmas. Dex is such a strange drug and it amazes me how differently we all react to it . I did get lots of bloating and water retention too and now always take ferusimide The other unfortunate side-effect for me is excessive wind , very embarassing ! I think the lethargy is something you are stuck with due to…[Read more]

Dear Mari
Glad to hear your Christmas was good,Slim slept through most of Christmas,but it was still better than last year,wish I could get back into reading,to be able to stop thinking about this myeloma.

No Slim did not have sub cut,when I asked about it,was told it was effecting some people,also has not come to our hospital yet!!!!!
Its…[Read more]

Hi David

Hope you have had a great holiday. Thank you for all your positive messages posted this year.

Wishing a continues remission in 2012.

Love to you and yours.

Mavis x

Hi Dai

Thanks for your greetings and a belated birthday wish from me too!

Sorry things are still tough for you. Do hope the PN subsides soon. I can imagine how difficult it must be for you having had some nerve damage in my legs some years ago. It is still difficult to get comfortable at night. Do you take any medication for the PN? I…[Read more]

Dear Michelle

However you may feel you are doing, you are very brave to have got your head round things enough to plan your husband's funeral, but we will all be hoping and praying that this is not the time you need it. Sometimes preparing for the worst is a neccesary part of being able to cope with all the distress and uncertainty.

Love in…[Read more]

Dear Ed

Welcome to this site – know other carers will give you the support you need, but hope you can find some nearer home too.

I am now in the "wait and see" plus Zometa phase and take comfort with every consutation where this continues. I take heart that there are lots of folks out there for whom this phase lasts for years. I remember…[Read more]

Hi Lyn

Just caught up with your posting. Sorry you and Pete have had such a difficult time and then eventually getting the mind blowing diagnosis of MM. It is such a lot to take in. After just over a year into all this I am just beginning to appreciate just how hard it was for Gordon when I was first admitted to Hospital, had emergency…[Read more]

Hi everyone!

Yes, all the news that comes out, including latest stuff from ASH (See Myeloma Beacon Web Site) is so encouraging. Let's hope and pray we are all in this FOR THE LONG HAUL!!!

Lots of love to everyone for 2012 and many more years to follow.

Mavis xxx

Hi Shirls

Glad you had a good Christmas and that people spoiled you. As others have said – yopu deserve it.

We had a good Christmas. I drove to and from London, from Yorkshire, and was so grateful there was no snow this year as this was the first Christmas Day we have spent with the grandchildren aged 4 and 20 months. We were all so…[Read more]

Hi Jean and Frank

What a lovely day you obviously had. A good excuse to forget the dreaded MM and the bad time Frank has had the past few months. A lovely picture to bring back wonderful memories in the future. I still enjoy looking at my daughter's wedding photo and it was ten years ago. One of the best days of my life!

All best wishes…[Read more]

Hi Helen

Sorry about the infection and the alergy to the wig! What luck. Still, at least your hair is growing – another couple of months and this hard period will almost be behind you.

Amazed that you had energy to cook for so many.

Have a really good year in 2012. May it feel like a new beginning.

Mavis x

Hi Chris

Sorry you have had to join us! I feel for you as you come to terms with this life changing diagnosis. I find, now it is over a year since mine that I have come to an easier accomodation with MM. Fortunately, so far, apart from surgery on my back and radiotherepy, and now monthly zometa, for my bones, I haven't had to have any other…[Read more]

Hi Dai sorry I missed your birthday post but good to hear you enjoyed yourself , I wouldnt expect any less of you! Sorry cant help with the pn problem although mine did go away after a few months of stopping Velcade and I remember thinking it was taking forever too I really enjoyed christmas and having 2 daughters ,grandson and dog to stay but…[Read more]

Dear Michelle I can only imagine the pain you are going through as Min said this bl–dy awful illness! Dont give up yet I was on Velcade and Revlimid neither one worked but my doctors have put me on Bendamustine and Thalidomide I am not on a trial but apparently these drugs can be applied for under special circumstances Ask your husbands doctors…[Read more]

Hi Chris welcome Although it has been 5 years since I was diagnosed I can remember feeling very confused , angry , sad and at other times flippant and off- hand about it, I imagine a lot of people would also recognise your description too so you are not alone. Believe it or not things will get easier as you get your head around the treatment and…[Read more]

Hi Dai
Well you seem to be doing well getting out and about,happy belated birthday wishers,are you one of these people who only get one present instead of two because your birthday is close to christmas?????

Slims sleep patten was all over the place awake in the early hours and tired and cat napping in the day,doctor gave him a very mild…[Read more]

Hi Jean I am so glad you had a good time it sounds wonderful especially having all the family together . I am sure Frank thinks its worth a few extra hours sleep .I couldnt open the photo but I will try again later Wishing you all a healthy happy new year love Bridget x

Hi Everyone
So glad everyone had a lovely Christmas,
We went to one of my daughters who,s husband cooked a lovely meal,Slim managed a sip of champagne,and some christmas dinner,then went to the land of nod,decided to take him home as everyone was tip toeing round him,was in bed by 5 pm.,Boxing day came and went for Slim,but I had a lovely walk…[Read more]