eve replied to the topic New to this site but not to MM. in the forum Newcomers 12 years ago
Hi Babs
Get that letter from the consultant and book it,it will do you the world of good,since remission,we have had a cruise,been to France and now NZ,we do not have a lot of money,but when you now your chances of living until you are 80 are not great,it,s not important.
Hi Jean
Thought I would say hello while on,we never seem to be on line…[Read more]
eve replied to the topic New to this site but not to MM. in the forum Newcomers 12 years ago
Hi Babs
IT is a bit of a bummer,comes and knocks you side ways,all your plans for the future,flying out of the window,well i am a carer and I felt like that:-P, still do some times,it,s a big learning curve,but look around you,all ways someone worst off than you:-S
My husband had his SCT in May so a little ahead of you,and we are off to NZ…[Read more]
eve replied to the topic Rev/Dex Update As Promised in the forum Side-effects 12 years ago
HI Keith
Well,you answered your own questions,so does that mean it was not so much of a shock or is it a combination of relieve plus your ready for the next hurdle,??? I am amazed that I could not find a lot of trials for people in your position in the uk. To put it bluntly you must feel any new trial offers some hope. I looked at cancer…[Read more]
eve replied to the topic New and need advice on Myeloma XI in the forum Newcomers 12 years ago
Hi Ali
Must admit I felt cheated for Slim,I had done a lot of research and 33% chance of no treatment and 66% of treatment,Slim got no treatment,to be truthful felt deprived,and I am just a carer lol.
Saying that have got my head around it,now looking forward to 6 weeks free,then 2 weeks of test and consultant,so there are some good points…[Read more]
eve replied to the topic Colin SCT starting, here goes!!! 🙂 in the forum Treatment 12 years ago
Tom I have to say it,you are as bad as Slim,
Slim was being sick and I went out to the desk and spoke to the doctor who said he could go home,as long as he was not sick, mhhhhhhhhhhhh.He had told her he was not being sick earlier,I told her," he tells lies",who did she believe,An ex marine who could look you in the face and lie.
I rest my…[Read more]
eve replied to the topic A wee bit confused in the forum Under 50s 12 years ago
Hello Stewart
Well a very bonny welcome,and congratulations on your new baby:-)
Well MM is the last thing anyone needs or wants,but saying that on here you are going to see and hear lots of people who live with it for many years,so you will learn to cope with it.
First may I say forget that diet,you will need all your body to sustain the…[Read more]
eve replied to the topic BMB Tomorrow in the forum General 12 years ago
Hi Keith
You sound very down,and who can blame you,I would agree they know the results,the meeting will be to decide the next treatment,in some ways they are trying not to leave you in a state of not knowing,but they forget,you become an expert on yourself.My advice is look on here at all the trials taking place in you area or not,and go armed…[Read more]
eve replied to the topic REVVING UP FOR SCT! in the forum Treatment 12 years ago
Hi Chris
Sounds if things are going well,they have taken your tube out,well well they must think you will not need any extra,s to help you improve like platelets.So that must be good,when you start feeling better you tend to want it to constant,well everybody is going to tell you it will take time,its something you cannot rush,if you stop and…[Read more]
eve replied to the topic Oh – Oh it's back in the forum General 12 years ago
Hi Carol
I am so sorry Carol,cannot help with PAD,Andy is the one to help you as he had PAD but it did not work for him:-(
Your right,you do not have to put on a brave face here,we do understand,although Slims in remission,the brain says when do we have to start going through this again,never said at home but the thought is there,then I give…[Read more]
eve replied to the topic New and need advice on Myeloma XI in the forum Newcomers 12 years ago
HI Eric
Hello and welcome.You must be wondering why you have not had any reply,s???
Well if i may explain,because you went into an old thread,although it shows a posting it has come on screen in the middle of an old posting.The best thing to do is ,log in go to the first section,which you did,then scroll down to start discussion ,then you can…[Read more]
eve replied to the topic Waiting in the forum End of Life and Grief 12 years ago
Hi Sue
May be the answers lie in what you did not hear!!!!!
When Slim was being taken to ITU a doctor in front of me said to him,you are being taken to ITU "I cannot promise you,you won,t die",he did nor ask and he cannot remember:-P.
Sue you need to speak to someone may be a consultant or your own doctor,you need to ask for a second…[Read more]
mhnevill replied to the topic Waiting in the forum End of Life and Grief 12 years ago
Hi Sue
So glad to hear Michael is now home. I lit a candle for Michael, at church this morning, and prayed for a miracle that you could all have some lovely days together.
Love to you all.
Mavis xxxx
eve replied to the topic Neutrophil recovery after SCT in the forum General 12 years ago
Hi Phil
This disease has no normality,so one persons story,has no baring on your,s,my husbands neuts and platelets took a long time to become stable.The thing they look for is,although the neuts dip,they look for a little gain each time,my husbands went down to o.3 when he was taken back in,he is now 6 months on and plates are 84 should be…[Read more]
eve replied to the topic Waiting in the forum End of Life and Grief 12 years ago
Hi Sue
If it is any help Sue,Slim had panic attacks when in ITU,and of course I was not there,and I was there 20hrs out of 24.made me feel awful,but he did say to me they were bad dreams,and we did talk about them after he came home.
So glad to hear he is coming home,make time just for you and Michael,you will need all your strength in the…[Read more]
eve replied to the topic Ahhh so this is Dex….. in the forum Carers 12 years ago
Hi Emma
Glad to hear your mum is feeling better,there is so much to learn when starting treatment,so it is a big learning curve.:-)
When your mum starts treatment everything will be explained,about tablets when to take them and the best times,there are a lot of tablets so go out and buy a pill box,and make a chart makes life easier.
Kidneys…[Read more]
mhnevill replied to the topic Waiting in the forum End of Life and Grief 12 years ago
Hi Sue
Couldn't sleep well last night – unuisual for me, so was thinking and praying for you and Michael a lot. Do hope Michael is calmer now. It is a time when he could naturally feel frightened. Hope you are able to spend time with him, – and perhaps other members of the family. Is it your daughter in the photo with you?
Lots of love…[Read more]
keznmel replied to the topic hospital again….. in the forum Under 50s 12 years ago
Hi guys – Thank you so much for your messages. It really is overwhelming receiving encouraging messages from you all. Thank you – I am so glad I have joined this site.
I hope this finds you all well – lots of love and best wishes.
Take care Love Kerry xxx
keznmel replied to the topic Hospital again…… in the forum Newcomers 12 years ago
Hiya Wink… Thank you for your message.
You are right, it is the damage that MM causes that is the really problem! I always say that if Melv just had Cancer to accept without the disabilities that it has caused, he approach it with determination and fight with everything he had. However, as he is slowly losing 'who he is' due to no longer…[Read more]
keznmel replied to the topic Hospital again…… in the forum Newcomers 12 years ago
Hi Megan – Thank you for your message.
It sounds like you have both have it tough too. I'm sorry.
I understand what you are saying about the beg of the MM journey and we are so happy and positive regarding the PP levels, it's fantastic and a step in the right direction regarding the Myeloma. However, the damage that the Myeloma has caused…[Read more]
mhnevill replied to the topic Waiting in the forum End of Life and Grief 12 years ago
Hi Eva
How do you get on the myeloma listserve? I haven't heard of it before,
Lots of love.
Mavis x