Hi Mike

Well as you know,the patient does not get much choice,it,s either trials or treatment as laid down by NICE and all of this is still a post code lottery, If you are lucky and can find a Haemotologist that has a special interest in Myeloma and also has some perspective about the awful damage and pain it causes,physically and…[Read more]

Hi Amelie
Well i hope John has a good recovery,and starts to feel better,I do not envy you a winter in Denmark,but I suppose as we are use to wet weather you are use to the snow and cold,my husband spent many a winter in Denmark,one of his hobbies,was blowing wholes in the ice and diving,use to be in the Marines!!

I was interested in your…[Read more]

Hi Andy

Good luck with the Radiotherapy,
As to the catheter,well the question must be why did they put it in????loss of control or your condition at the time it was put in?????.
There seems to be grey area,s with your low back,chemo works on any form of cells,they know chemo has not worked to reduce your cells,so why have they not given you…[Read more]

Hi Liz and Kev
Congratulations on another granddaughter, Myeloma puts everything into perspective,for all the family. Also you appreciate the event a lot more when you thought you would only have the one grandchild.
I hope you have lots of first ahead as a family,first steps,first school,first boyfriend,and lots more. Love Eve

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…[Read more]

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…[Read more]

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…[Read more]

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

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…[Read more]

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…[Read more]

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…[Read more]

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

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…[Read more]

Helen

You did it.Eve

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

Hi Teresa
I know this is a hard time for you and your family,I hope you have a palliative care team,coming in to help you.
I can only send you my best wishes,and hope you achieve those small goals,that you talked about.Peter has a goal with the grandchild on the way.
Love Eve