Hi Shirl
Just seen your post ,do not know how I missed it.
Well stuck in hospital with the weather so lovely out side,no fun and tired up to oxygen ,you don,t have one of those massive tanks do you,or can you get about with a portable one?
I take it the info day was at your own hospital?
anyway at least your home now,this weather is going to last till Wednesday on the SE Kent coast,its hitting 30 deg.down here,Slim loves it first time he has not had to wear layers of clothes,and I can sit in the garden in the evening, with him,me drinking G&T him juice,but just to be able to do it,seems like our old life back a little bit.:-)8-)
Any way hope this oxygen thing does not last for long,good luck Eve
My word is
QUESTIONABLY
Leaving BLY
To me this is what life is about at the moment:-) Eve
Hi Min
Lovely to hear you are posting again,so worried for you at one time,knowing daughter lived away and son at sea.
I have thought about starting a support group,but it would not be practical for me personally.For a start no way would Slim go!!:-P,Have been trying to get him to go to London,but no go!!!!!
He is a very self contained person,its me that feels the lack of support.This site helps so much,I know just from Slim how we all deal with this so differently,Slim thinks about things for a long time,then asks.
I just wish that people who have remission would post more,like Peter so we could have good news,
Min you have so much knowledge to help people here,so yes I wish you would keep posting,you are a cyber friend.
Being deaf doe not help my situation either,hopeless on phones,need one to one situations large groups are a no no.
When things are said,I always wonder have I heard right,often ask people to repeat,one of the reasons I like every thing on paper.So I do not think I would make a good support group leader!!:-( Love Eve
Hi Peter
Thanks for replying,its just interesting the different ways Velcade is given,and with different drug combinations,and how effective it is on different MM,:-S
You are the first person I have heard from who was on Velcade and 3 years on is alive and kicking,half the problem is I am 80 miles away from a support group and this is a life line to me.Like most people I am looking for answers.:-) Eve
Hi Ellen
I have been posting on here since February this year,and found some thing I believed did not exist(cyber friends),so yes I mourn their loss,it also brings it home,this is going to happen to me.:-(
I would have loved my husband to have sailed through this horribly treatment,and come out the other side,like Jet,who only wants positive vibes in her life,most people would want to maintain a sense of well being 100%.
We have to find a balance,so people with good news do not feel guilty about posting,and people who are desperate for help,do not feel guilty about up setting people with their problems.I do not know how you can achieve this?
I do think,talking about death,could be helpful and practical,but to make it a separate issue,could isolate people,
You cover most topics on this forum,every thing is informing and practical,funny and sad at times,and we all try to share this.Its like the saying if you did not laugh you would cry.So I am sitting on the fence on this one:-S Eve
HI Min
So glad you are coming back to us,and so glad you have taken that first step,from reading your mail,I think you are a very strong person,and for awhile you worried me wondering if you could get through that black tunnel and see some light at the end:-),Grand kids,are a tonic,just what you need.
As for cars cannot help you,me personally I would buy a small camper van and start following the sun,I know lot of women who do it on there own,so that would be my choice,your dogs would love it.
Lovely to hear from you Eve
Hello Peter
Welcome to the site I hope you enjoy your your journey here,finding out new information and any help you need or can give:-)
How do you rate Velcade,how long were you on it,and did you have any side effects?????
Where you on trials? and what dosage did you have.It sounds so interesting.
I would be grateful for any info as my husband has just started Velcade:-(
Regards Eve
Hi Gill and you also Stephen
I am sorry to hear the news,but your Stephen have the right attitude,I can see were your thoughts are,Stephen will choose his time Gill but I think he just might surprise the medical profession.i think he has lots of things he wants to do,;-)
Slim wants to go fly fishing,will arrange it soon:-S
It,s very hard Gill,I wish there was something I could say,to make you feel better,I wish you and Stephen happy times,I think Stephen might have a few planned for you both.
Give my love to France.Eve
Hi Dai
Thanks I am fine,just feeling a bit low at this time,no reason,
Glad to hear your good news,and it,s lovely to see so many people coming on the site with lots of good news,
Just what we need after so much bad news,In some ways i hope Sarah and Min,do go on and get on with the job of living and enjoy their future,but as you say they will be missed.
I suppose if you have cyber friends,cyber mourning is the equivalent,to me I will be sorry if they go,but i do believe it means they are moving on with their lives,even if its just a small step.
Any way enough of this,did I read on here about someone who has been taking Velcade for 4 years!!!!!!! need more info how, were,why and when cannot find it!!!!
I am going to start decorating ,find it helps to keep busy,will look in,but feel I just need to keep very busy at this moment.Love Eve:-)
Hi
I hope Min has taken a little time out,may be,she has gone to enjoy her grand children,if she has she will come back refreshed,and stronger to cope with all those inefficient people who do not know her situation and have no understanding of it.
Min will come back in her own good time.Eve
Hi Gill
My,Stephen is brave I suppose it is better recovery with local,and chemo should finish off,I suppose Gill with all they go through,its just part of the bigger picture:-/.
Do understand were you are coming from,to me it seems like waiting for the next episode,I do not think sct now,I just wait!! as cdt did not work,will velcade:-P.I worry,and do not sleep,Slim doesn,t worry,and is unable to sleep,Velcade seems to keep him awake,even on his week off.WE are both sitting here at 4am drinking tea!!:-)
Slim would say to you what is the use of worrying when there is nothing you can do about it,may be we adapt as we go along,and go with the flow like Bridget.
Love Eve
Hi Graham
If Tom can do it you can,do not think they are a strict bunch,you have different issues when your younger with families,work and money so still worth trying,they can only say NO,and that,s nothing with all the other issues.:-S
If it is any help to you,at this time your face looks ravaged and you look into that mirror,it does get better," my husband has stopped looking like death warmed up" LOL he started at 12 1/2 stone and 6ft1in,then went to 9 1/2 st and 5ft 8in,I cannot tell you the joy of seeing him put on a stone.
So be bold ask to join. Eve
Hi Dai
How did the holiday go,plus the weather,must have just been nice to get away from treatment for awhile:-/
Soon passes it seems like yesterday you were saying about starting Velcade,Slims just finished second cycle,wish we had your turn round for bloods and Velcade,we do it in 2 trips.60miles all together.:-S 😛 Tried staying around longest 9 am arrival treatment 4 30pm.
Hot water bottle works for Slim,tried without it 3 nurses 5 jabs later!! starting to bruise tells the nurses I beat him up,I could swear one of the nurses believed him for a minute:-P
It seems to be lucking good for you,I see you are still awake through the night,if you find any thing that makes you sleep let me know,thats about the worst Slim has ,just cannot sleep,so we sleep in relays,one in one out,dog does not know which one to go with:-P love Eve
Hi Graham,
My first thoughts on reading your post,your 2005 and relapse 2010,and wondered how you have managed to cope with this all this time,family and friends are good,but its people on the same journey who understand.:-)
You are further on your journey,than my husband,but I can see you are going to be a great asset to this site,and I hope in turn people will be able to help you.;-)
I hope they manage a good harvest for you,some people on here are,going along the route of no SCT,It,s a hard call.There are new drugs coming along all the time.
You do not give your age,but you look young,you might think about joining the under 50 as well,they seem to have a good group,and when you feel like kicking off,as we all do,you can get away with it:-P
So its welcome to the journey,I hope you enjoy the company Eve
Hi Everybody
NOTIFY
My word for today IFY Eve
