eve replied to the topic Colin SCT plan b! in the forum Treatment 12 years, 1 month ago
Hi Vikki and Colin
Just popped in to wish you the best,you do not need it though,you both seem to have the right attitude,will all be over in a months time,and although it will seem a long time to get back to good health,you do get there.Eve
eve replied to the topic Two hospitals in one day in the forum Treatment 12 years, 1 month ago
Hi Andy
You will get there,it sounds like a good idea to me,crack on up wards,might be worth talking to Shirley on hear,I know she has had one.
Look at Myeloma Beacon Survives people on there have been going for many years,they say it,s the nearest thing to a cure.Eve
eve replied to the topic Staging??? in the forum Newcomers 12 years, 1 month ago
Hi Kerry
There are books you can get to tell you all about MM if you ask Ellen the nurse I am sure she will send you some,plus what ever hospital,Melvin goes to should have given you some.
I asked and was told they do not do staging any more,which was completely different from what the books said,when we went to Kings in London,I was told…[Read more]
Gill replied to the topic Sad news in the forum Under 50s 12 years, 1 month ago
Dear Rachel
I don't very often look at the under 50s site but having done so tonight I would like to add my sincere sympathy to you for your loss. mm is so unforgiving and spiteful. My husband died on the 11th September He was 57 and considered young to die from mm But being wiped out at Paul's age is unbelievable.
Much love Gill xxx
Gill replied to the topic Stephen It was a real celebration in the forum End of Life and Grief 12 years, 1 month ago
Thank you for that Dai
It was very much one that both Stephen and I loved It maybe explains my smart red hat and purple pashmina. I still have a purple dress ordered for his funeral but unpacked and unworn as it seemed a bit over the top. (we were both a bit non conformist but there are certain things that one does not do and dresses are not my…[Read more]
Gill replied to the topic live life in the forum End of Life and Grief 12 years, 1 month ago
As somebody who lost the light of their life in September I send you my heartfelt sympathy
Gil xxx
eve replied to the topic My 39 year old Melvin's MM Journey……. in the forum Under 50s 12 years, 1 month ago
Hi Kerry
I have just found your original posting,full of so much detail,it does explain why you feel so frustrated and angry,I can only say I am sorry I missed it completely,like so many others.
After reading this,I think you should sit down with your consultant,and ask a few questions,the compression of the spine is not good,I do not know…[Read more]
eve replied to the topic SMM has become Myeloma – immediate treatment in the forum Newcomers 12 years, 1 month ago
Hi Sarah
They will not use radiotherapy on your spine unless you have compression of the spine and cannot bear the pain,chemo will do the job just as well.
Just concentrate on your tablet regime,it helps to do a board with the days and times you have to take them,as it is easy to forget what day you are on,some hospitals provide a chart worth…[Read more]
eve replied to the topic REVVING UP FOR SCT! in the forum Treatment 12 years, 1 month ago
Hi Chris
All sounds good,ask your wife to bring your favourite mug in,it helps with the drinking,rather than have hospital mugs.
It all takes a few days to kick in,do not worry,nurses have seen it all before,you should be able to have a walk round when it is quiet.You will not see them much as they keep away only do what is needed,because of…[Read more]
eve replied to the topic I feel so miserable! in the forum Newcomers 12 years, 1 month ago
Hi Kerry
I think Tom has summed it up,you are just feeling what we have all felt at one time or another,you will work your way through this,but find some space just for yourself,instead of being a task to walk the dog,make it a pleasure,your own space.
The only time you have to worry is when you are bawling at strangers,or crying in front of…[Read more]
eve replied to the topic Just Diagnosed in the forum Newcomers 12 years, 1 month ago
Hi Mary
This thread is getting so long,it will be a record soon,IF you sign in and go to the section you want example General or Carers.Scroll right down to the bottom and you can start another discussion.
Mary Slim had a good few infections you will get use to it,first sign of low blood pressure or temp or just not very well,ring the…[Read more]
eve replied to the topic starting treatment in the forum Newcomers 12 years, 1 month ago
Hi Ali
Tell your mum not to rub the site after injection,this is what causes the bruising,try not to touch it,hold the tummy firm,and make sure ,to use alternative sides.
Slim has very little flesh,but never had bruising only the flesh getting a bit hard.
Polly I know it,s hard,I make a better carer than patient,I know all the theory but…[Read more]
eve replied to the topic starting treatment in the forum Newcomers 12 years, 1 month ago
Hi Polly
Well my advice is to go on the trials,you will be randomised for CDT or CDR first one is standed treatment second one is a new version,both available as first treatments.It is the Velcade which is second line treatment that is important,Velcade at the moment is second line treatment that is still under trials,so could be with drawn,but…[Read more]
eve replied to the topic CTD Completed – thank heavens! in the forum General 12 years, 1 month ago
Hi Kevin
Just come on to say good luck with your SCT,it is hard going but like most things you will feel better just takes some time.Eve
eve replied to the topic Still angry in the forum Carers 12 years, 1 month ago
Hi Lorna
Hope you are feeling more up than down,this illness brings you down to earth,big time,but saying that it does make you appreciate what you have,in your case how lucky you are to find the man you love.
Some one once said to me life is like a card game,you have been dealt your hand and it is how you play it that counts.
I feel down at…[Read more]
eve replied to the topic Spoke too soon! in the forum Side-effects 12 years, 1 month ago
Hi Pat
Glad you managed to sought you pain out,pain can drag you down,and it is the last thing you need.Tramadol is effective but again not a slow release,your own doctor will not like you having a controlled drug,plus they are addictive so watch out for side effects.
Going once a week will take away some of the strain,when Slim was very ill…[Read more]
eve replied to the topic Still angry in the forum Carers 12 years, 1 month ago
Hi Everyone
I do not think I ever felt angry with are situation,sorry we had put off doing many things,wish we had not put them off to a later date,but that,s life,you take your chances.
In fact I felt lucky,we do not have much money but we have not waited for retirement to do lots of things,I just looked at people,s lives around me.So anger…[Read more]
eve replied to the topic Low Blood Counts in the forum Treatment 12 years, 1 month ago
Hi Keith
When you feel well the last thing you want to do is spend time in hospital,it was always a fight to get Slim there when I thought he needed to be checked over,you tend to think you know what is best,but I know from Slim there is a fine line between being well and being confused and he crossed it many a time.
The platelets below 20 is…[Read more]
eve replied to the topic It's not the cough etc etc in the forum General 12 years, 1 month ago
Hi Helen
Well you must be feeling rotten ,I asked should Slim have all his childhood injections again,and was told,only needed them if he had donor cells,sounds if there might be a case for having boosters.
At least you now know what it is,which must give you some peace of mind,are you having to have a lot of time off work,this cannot go down…[Read more]
eve replied to the topic SMM has become Myeloma – immediate treatment in the forum Newcomers 12 years, 1 month ago
Hi Sarah Jane
It,s all a bit mind blowing at first,and naturally you are worried about your child.Try to take one day at a time,and get help to sought out your problems,the easiest way to do it,is contact the Mac Millan Nurses.
They can help you with all forms,get things in place now because you will not feel like doing it later,blue…[Read more]