Hi Mari and Ali
I hope you do manage to get away,will do you both the world of good,school brakes up soon,so that will be a rest for you Mari.

I agree Ali your mum is very brave,must be holding a lot of those emotions in,SCT is not only body draining it takes you in to another world of emotions,so your mum is holding her own,by taking control…[Read more]

Hi Dai
Well I would agree,and can see what you mean concerning damage to the skeleton,as you are aware Slims skeleton damage is extensive,but at least no compression,so the ability to put one leg in front of the other is there,even if there is pain.

My concern is you attend the hospital,bloods show no markers of illness,but as a carer I see a…[Read more]

Hi Helen
Well to some extent I would agree with your outlook concerning second cancer,but I also think it depends on what second cancers are rearing there ugly head,for example percentage wise are they blood cancers,they must have some dater on it ??????
If for example it was causing (PCL) using that as an example!!! as we know of at least one…[Read more]

Hello Dai
I like the old saying ( you are as old as you feel ),I think this should apply to health, (you are as good as you feel )
Your bug or what ever just might have been that, a bug,that even without the MM might have knocked you off your feet anyway.I have just had the same with all the symptoms you mentioned.
As a carer I look at…[Read more]

Hi Mari
I know110 for Platelets is low,but Slims have never been above 50,so I have given in worrying when he walks into a door or knocks himself,apart from wrapping him in cotton wool,I cannot do any more,and my attitude is if internal bleeding is the danger,why is no one very concerned.!!!!

I would agree they need to be very stubborn just to…[Read more]

Hi Etta,
I am sorry about your sister,I know a few on here who have had the same thing going on in there lives Jean lost her brother,I lost my Grandson,so we do understand how you feel,myeloma is hard enough without a death of a loved one.So you are entitled to feel low,we can only off sympathy,and a realisation that we do know how you feel Love Eve

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