Hi Kay
Sorry to hear you think its,back again,just wishing you good luck for tomorrow,Slims in the same boat except he has never had remission,tomorrow we find out if the second lot of chemo Velcade has worked,I try not to think to far ahead,as we have been here before.
Hope all goes well Kay,best wishers Eve
Hi Nicola
I know its hard but may be your dad is better off at home,you do need that home visit to asses how much help is needed,you do not say if he has a carer who can provide a good level of care.
I know what hospitals are like,the nurses just do not have the time,My husband spent 22 days in hospital 9 in itu,I spent 12 hours a day there making sure he was clean fed and watered,basic nursing skills,which seemed to be lacking.
My advice is get your own GP to come out. Eve
Hello Pilgrim
I think you have done the right thing finding out as much as you can,Myeloma is sometimes very hard to diagnose,and often gets over looked as a cause for some ones illness,at least you have a good GP who has taken note of what you have said and acted on it.Many people get over looked until there bones start breaking then the correct blood test and urine test are done.
If the GP has taken blood and urine and has diagnosed possible myeloma,the only way it can be confirmed 100% is by a bone marrow biopsy,plus full body exray for damage to bones and MRI scan
It sounds very scary but I should imagine in your case at least you will know were you stand plus you have already had cancer,you will find other people on this site,that have not had the best of treatment until it was diagnosed.My advice to you is keep to this site also look at contacting Ellen the nurse who can send you information,so when you do see consultant you will know a little about the condition.Eve
Hi Nicola
Sorry you had to join this site,as for help no one would be able to help with so little information,may i suggest you ring Ellen first thing tomorrow.
Why have they sent you father out with out.with out some form of back up,How an earth are you coping ,what medication is your dad on,lots of questions,please ring Ellen, Eve
Dear Mari
Glad to hear your Christmas was good,Slim slept through most of Christmas,but it was still better than last year,wish I could get back into reading,to be able to stop thinking about this myeloma.
No Slim did not have sub cut,when I asked about it,was told it was effecting some people,also has not come to our hospital yet!!!!!
Its very hard to know if Slim is more lethargic as he has never had good health from starting Myeloma,and as he has been very ill any improvement is a bonus.Although they are talking remission,the constant bone pain is always there he has tried twice to cut pain killers,but cannot,I know he has a high pain threshold,so I am assuming its all bone pain,this does take its toll,and effect his well being on a daily basis.
Slim does have a small bloated stomach everything seems to have settled on his middle,but if you consider that he has lost 5 inches in height,that has to settle some were,his upper body is very noticeable small when sitting in the car,against his very long legs!!!!!!!{ 6ft 1 to 5 ft 8 } 5inches lost on spine.
Slim did not have the mood swings,so much on Dex but it is taken different with Velcade,before on CTD it was 4 days in a row,with Velcade he takes it same day as Velcade and next day then day off then Velcade and Dex and Dex next day,part of Trials.
His food taste changers on a daily bases,when he feels ok he eats well,but has never regained his good appetite,so its small amounts as many times as possible.
Hope this is some help,on the whole Slims health has improved,but all those months ago he was so ill,every one seems to be amazed that he has done so well. love Eve
Hi Dai
Well you seem to be doing well getting out and about,happy belated birthday wishers,are you one of these people who only get one present instead of two because your birthday is close to christmas?????
Slims sleep patten was all over the place awake in the early hours and tired and cat napping in the day,doctor gave him a very mild tablet to take said it was a ante depression tablet that they use as a sleeping pill,it did the trick but is asleep all night and still tired and cat napping may be it takes time to take hold,just trying to get some normality to his sleep patten.
His best time is morning eats well and goes for a walk with the dog,but by the afternoon,feels the cold and has heavy legs never suffered from PN just very sensitive legs.
Skin has just started to go very dry on his face so using a oil based cream.
I think when he began to feel not right over christmas,we assumed the worst,then as he felt better,we have assumed it was a sip of champagne and the glass of wine he had,he did tell me today the tablet for sleeping said no drinking!!!!!!I have to watch him like a hawk,his weight fluctuates on a daily bases,so its a battle to put some weight on him.
We see consultant on 6th so,all results should be in,and we will know were he stands,looking on the positive side and they are now talking about an appointment for Kings in London to consider SCT,
Anyway Dai enjoy the rest of the Christmas holidays,wishing Janet and you a happy new year.love Eve.
Hi Everyone
So glad everyone had a lovely Christmas,
We went to one of my daughters who,s husband cooked a lovely meal,Slim managed a sip of champagne,and some christmas dinner,then went to the land of nod,decided to take him home as everyone was tip toeing round him,was in bed by 5 pm.,Boxing day came and went for Slim,but I had a lovely walk along the sea front,it was a beautiful day,the dog made lots of new friends and for once found no cod heads to roll in.
So it was a better year than last year,so next year has got to be better than this year,or as Tom would say onwards and upwards:-)
Hoping everyone else enjoyed there Christmas.Love Eve
Hi Dai
Merry Christmas and here,s to a good new year,this Christmas I was thinking it must be better than last year when Slim was so ill,well it was a bit better,Slim managed to eat half his dinner and was falling a sleep at the table,grand kids thought it was hilarious ,after tip toeing around him for a hour decided to take him home,boxing day came and went.:-(
How have you been effected since coming off Velcade,Slim thought he would feel much better,instead he now sleeps more day and night,has heavy legs (his words )and can go hot to cold in seconds,as you are not posting much,do not have any knowledge of what to expect.can you help,is this normal.Eve:-P
Hi Linda
Welcome,you are not alone and we have all felt exactly what your feelings are at this moment,even the guilt,wishing you had made hubby go to the doctors months before,looking for a reason why this myeloma started wondering about what the future holds and how an earth are you going to cope.
Treatment a bit mind blowing,we use to joke,eating so many tablets there was no room for food!!
As Bridget and Claudette says it does get better,I think the more you know about Myeloma,the better it is.It takes that fear away when things like side effect kick in,you begin to know what to expect and if you are unsure you can all ways come on this site or ask Ellen the nurse.
We were at the hospital yesterday,and bumped into the nurse who arranged our wedding in ITU,she was saying how well Slim looked,and how she thought he was not going to make it.I will not say it,s easy to get through this treatment and some of the pit falls along the way,but you will do it.
The hardest thing for a carer is being strong when your partner is feeling down,its not easy,they are the ones who are ill and you are the person carrying the burden,we would not be human if we did not cry and feel a sense of loss its your life too,so do not feel guilty.
I find this site has given me knowledge and strength,most people will have there first round of treatment and have remission and that has to be your goal,so stay strong and think this time next year,is going to be so different. Eve
Happy Birthday Dia,
many more of them,simply pleasures are the best,so glad your Janet and you are enjoying them.
take care love Eve and Slim.
Hi Sarah
Banks are there just to squeeze as much money out of you as they can.!!!!
If its any help in the future Sarah,we had an awful lot of problems with Slims mum,s banks,and had to go to the court of protection which in it,s self is a robbing legal organisation,but because of the problems we had,we decided that we had to make plans if anything should happen to one or both of us wills are not enough.
We gave each other the power of attorney plus one of my daughters if any thing should befall both of us,that piece of paper seems to be the only thing that banks consider,so it,s worth looking into for the future.It does not cost very much and should make things run smoothly. love Eve
Hi Mari
Dex for Christmas,at the least Steve should have a good appetite,and be on a bit of a high,a little bit more energy and less sleeping,that,s what I call a Christmas present from the nhs.
Hope the Velcade works for Steve,it seems to have worked for Slim,he has started on a tablet to help him sleep at night,sorry we did not do it earlier as he had his first full night in bed for a long time the Velcade effects his legs so does not sleep well when lying down.lesson learn,t.
have a nice Christmas love Eve
Hi Everyone
My Christmas wishes to you all,plus the team behind this site in Myeloma UK.
Today my main thoughts are to the people who have stopped posting for what ever reason,you might have left us,but your not forgotten,and to all the people who look in to this site but never post,remember you have something to give,and that,s your experience of Myeloma,which in turn helps people who come on this site for support and information.
Christmas is about giving,so I give you all my best wishes and hopes for another year,Love Eve
Hi Everyone
Yes I can accept some forgetfulness is age related,sorry boys and girls it,s the Chemo,we have lists for every thing you could imagine,and if things are not in hand reaching distance,they are never found again,stands up two steps,then cannot remember why he got up,good job he has not lost his sense of humour,we can at least have a good laugh about it.
I think in time it should get better.loves crosswords sudoku and scrabble,so it all helps,but if Slim does not use modern technology everyday eg; remote controls,he forgets how to use them,must admit GUILT I am not the most patient person,mainly because I spend a long time explaining,how to do it,knowing he will not remember in 2 days,so I have a tendency to take over,which is not the right thing to do,as the saying goes,Do not use it,you will loose it.
In reality you cannot expect,any different,it has,made Slim realise how difficult I find things having a hearing problem,so he now realises when I mis hear thing,or get words mixed up,its not very nice to laugh at some ones disability,laugh with them yes,but not at them .
So David your memory has gone,but your body is still alive and kicking,that,s what counts. love Eve
This is the week I dread before Christmas,shopping done even went to France for some goodies most Christmas presents bought,trying my best to keep away from the shops,because I know I will not be able to resist the so called Christmas bargains,I am a sucker for a bargain,and we all know the previous price was inflated.It is all a mind game,and I think this year is going to be the worst,people waiting last minute to see if prices get slashed.:-P
Will make out a last minute list of what I need and will do my best not to buy any extras.Eve
ps the list is getting longer lol
