[eveParticipant]

Hi Amelie

John is lucky to have enough stem cells for a second sct,and not have to go through another harvest,is any after treatment planned after sct. ??????

How long did John get from first sct to mm coming back?????

Am I correct you are based in Holland,do they have a criteria to follow or is John on trials,or is he treated more as an individual with individual needs'
Love Eve

[eveParticipant]

Hi Mike
This is just a welcome to the site:-)

When I read your post,my own immediate thoughts were so selfish,one was we will have our own resident expert,as this is what you would become,you might not know much about Myeloma at present,you will learn,just to prepare yourself[just incase]:-P
Then my thoughts were for you as a person,and I hope it never gets to the position of full MM.

So you are very welcome,but so sorry you have joined this roller coaster.Eve

[eveParticipant]

Hi Mari
Good luck with the harvest and try to get that holiday in between,when we asked about gong away we were told no to going abroad,my daughter did say at the time,don,t let them rush you,but like all things,you just want to play your part,I think a holiday would have done us the world of good,i suppose with are added burden,it just took to much out of us.physically we both seem to be going through the mill.So you make sure you go while you both feel fit.

Can I use this post to ask if any one knows how Gill and Stephen are doing????Gill has not been posting and Stephen,was having problems,any one know. Love Eve

[eveParticipant]

Hi Stephen

Found another song that is fitting,WE got to get out of this place,by the Animals,takes me back to my youth.Eve

[eveParticipant]

Hi Sue
I think you have to ask yourself if it had been your own consultant would you feel the same.If the answer is yes,then ask for a second opinion this is your right.!!!!
The consultant is not yours and may be did not feel comfortable having to tell you,it is a decision that is usually made after consulting other people,You need to talk to someone I suggest may be getting in touch with Macmillan nurses.
As you say it is progressing fast,he is feeling well so it,s hard to accept,and when you have a consultant who cannot handle this situation you are entitled to some sympathy unfortunately they are not trained.
No one should have been put in your position,but they do not have the time,to explain.
There is only one person who can decide enough is enough and that is your husband,if he is prepared to try he should be given the chance,talk to him he might just be trying because you want him too.
He might just choose to plan his time left and enjoy it,without further intervention!!!!.Eve

[eveParticipant]

Hi Keith
I think I have come out in sympathy,think there is a bug going round,thought i was getting better then went down again,doing my best to keep away from Slim
With both of us being ill,I feel quite vunerable,as not use to this,we are both walking round like two old codgers,moaning every step of the way,dehydration makes your bones ache headaches,so if you cannot get enough water down you,try tablets to keep you hydrated sell them in Boots.Eve

[eveParticipant]

Hi Jen
if I am correct your Dad is on Velcade,There is a long list of side effects,so don,t worry to much,when he goes into clinic they usually real off a lot of questions,anything that is abnormal is looked at.
The Dose of Velcade can vary its usually decided by blood test,its a good thing as they check the bloods each time.If any of his levels fall very low the dose can be reduced,although they like the patient to follow the course they are given.
Hope this helps.Eve

[eveParticipant]

Hi Tina
Well i would agree with helen, if you are managing a Motor Home, thats good,Slim cannot manage ours.
As for the burping or hiccups,just keep explaining its because of the drugs people will understand,18 months and SCT Slim still hiccups like a gooden!!:-
P
You are an eager beaver!!!!,just look at it as part and parcel of the course.
Love Eve

[eveParticipant]

Hi Pennie

I have to say I never fail to be amazed.
First as your brother has the knowledge let him help you,,he will be able to tick all the boxers,plus apply for disability blue badge.

It will be nothing like your wages,but you might be able to work from home,plus it will pay for some one to clean,and you can earn more money.
You and your husband have worked all your lives,this is your entitlement.

Sorry if I sound abrupt,its not with out feelings,you do have to consider the time you both have left,and make the most of it. Eve

[eveParticipant]

Helen

You did it.Eve

[eveParticipant]

Hi Dai
Well one time I would have just done as I have been told,I have had Slim in to hospital twice since he came out on the first on June,both times raised temp,plus visit to DVT clinic,his nuets and plates are still below normal ,so I think best save than be sorry.:-P
I was told if he is ever sick bring him in:-S ,well if i took him in every time,we would be come a part of the furniture,I think also Slim would stop telling me any problems he has:-/ This is were the fine line comes in.

When is a stomach upset,or a raised temp,just what it is or turns out to be more serious,I now just do ops,for a couple of hours,saves going to hospital,and because if Slim is ill we have to go to A&E,your lucky Dai that you can go straight to clinic.

Dai if the DEX is giving you a lot of trouble it can be reduced,even on trials they allowed this,and do not forget Dex hides infection,no outward signs just confusion in Slims case,plus a bit un steady on his feet,this caused mass blood clots plus holes in lungs with pnuemonia ,So be careful

[eveParticipant]

hi Pennie
You do not say how old your are,your husband is entitled to Attendance Allowance ,it is not subject to how much money you have,plus you might be entitled to carers allowance!!!.Worth seeing about .

I cannot help with the REV.but you have coped with other treatments,my husband is retired,but I do get concerned about him driving,so I drive.
Hope this is some help Eve

[eveParticipant]

Hi Beverley

This is just a welcome to the site,and hope you keep on smouldering for many moons.

By being diagnosed early,it means they will keep a careful eye on you,learn as Much as you can ask Ellen for books on it.

My husband went full in to MM with a lot of damage,and we do not know how long he had it.
So my advice is learn as much as you can, but knowing they have you in there sight at all times EVE

[eveParticipant]

Hi Mari
Amazing we are 70 miles down the road,and had nothing but sunshine all day,a bit windy,I watched my daughter sitting in Wimbledon with just one quick shower,It came down at my other daughters nr.Dover in sheets,but did not rain much 9 miles up the road.:-S
I think they do have different polices on different wards,as Slim was in Davidson when he went in,food was better but they had a bigger kitchen,so things like cheese on toast was available,Waddington just had a very small kitchen,and when i asked for iced water was told it was not allowed,I think Slims fluid intake would have been better if this was available.As luke warm drinks are awful.Love Eve

[eveParticipant]

Hi Everyone
The procedure working up to a sct differ from hospital to hospital.
Slim was like Steve,s we travelled up from Deal that day and got back at 8pm.
Slim did his own injections,we did stay up in Kemsing for the harvest as it took 2 days,Slim found it tiring he was dosed up with Calcium through a driver,because of feeling sick.
At Kings they do not allow ice or lollies or food to be brought in,because of infection,but other hospitals allow it.
I conformed until the last week,got fed up of going down to kitchen looking for something he fancied only to find ,no one there or it was [I will bring it up]he did not feel like it after an hour,s wait,so bought food in myself.
So my thought are all hospitals are different,and you need to find someone who has had a SCT in the hospital you are going to,plus recently as things change so fast. Eve

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