Hi Dai
With out taking over Stan and Mary,s thread I would slightly disagree with your figures,If they could only find why some people respond well and others do not,I can honestly say I do not know if Slim will get 6 months or 6 years,and i do not think the experts know either:-P
As for stress,mine was because I found people not doing the job they were paid for,I often looked at them and thought "you would not survive in the real world"I hated the fact that lack of care was the norm.,that was my anger,not why has this happened to us,I have never thought that,in our family a lot worse has happened and gone.The cards have been played.
I do except the emotional side at first is hard to cope with,this is the mourning side for life as it was,you pick up the pieces and think this is another learning curve,bring it on.I am sure I have other learning curves as we dice with Myeloma,and come to terms with what life has been dealt to me.
So Charlie and Mary,except this is a very emotional time,but you will get there,and as other things take there place,you will treat them like learning curves,or as Tom says onward and upward:-P Eve
Hi Winston
Welcome to the club,2003 until 2012,that not bad going at all,sad you are of remission but you gave it a good run,what did you first treatment consist of. 7 years which in it.s self gives everyone on here some hope.
I would have thought as they new you were in a situation,that they new it would come back,how did it get to the point of compression on the spine ,I ask this as I am aware that when it comes back it does not always show how much is going on in the bone marrow,the check up are on the bloods plus Kappa Light Chains.I would be interested to hear how your mm relapse was discovered.
I do think there are lots of new treatment in the pipeline,and I hope you manage to get some movement back,as the spine gets strengthened.Eve
Hi Polly
Well you are getting there,do not mention the pharmacy:-S :'-( >:-(,this is the one thing you will have to look forward to at the start of each cycle,in the hospital we went to they just could not get there act together,I can honestly say the drugs came up to the unit on time only once,and they would not even let me collect them,its not only annoying and frustrating,but when a person is feeling awful its not good for them,I put the fact of Slim catching pneumonia down to waiting with lots of people in clinics,the only place we went, were a lot of people were.:-P.
Tried complaining,I would of got a better response from a brick wall,so be warned.
I do not know how far you live from the hospital,but we did find it easier to go home in between bloods and having Zometer and collecting pills,some times we were in the hospital all day.
Polly you just have to stick with it,stay as healthy as possible and rest as much as you can,you must keep the drinking up,as veins collapse very easy,I do hope you have an easy ride,just listen to your body look after yourself Eve
Well put Dai
I think you do go through a time when you want to scream at the world,but you do get past that,and just think we will make the best of the time we have.
Mentally over the last 2 years I have mourned and buried Slim,looking back on it,I think it was just a way of preparing myself when he was very ill.We have talked about it and Slim tells me he prepared himself to die as well.So no denials between us.
We feel very lucky,and intend to enjoy every moment we have.Just in the process of booking New Zealand,will have to attend hospital every 2 months,for all checks Zometa and consultant,just told to go and enjoy are lives,but we are aware of the friends we leave behind,Love Eve
hi Peggy
Well all I can say is when we went up to Kings and went through the procedure with a doctor,nothing went as he said,different appointments came through some were done before stem cells taken some after!!!! Must admit i felt as confused as you,we had a similar conversation,after what we were told and what did actually take place!!!:-P
I think its about actually organising the whole thing its hard work in a busy hospital,they know that it will all fall into place,just forget about the person concerned sometimes,Saying all that could not fault them.
Before Stem Cells were taken,Slim was given a does of chemo to bring the cells into the blood,then he had to inject himself for about5 days,then stem cells were taken over a period of 2 days,this was done all as an out patient travelling 86 miles up to kings.Other people have had this done as an in patient different hospitals have different methods.
Hope this is some help.Eve
Hi Cathy
Nice to hear from you,Ivan has had a rough time of it so it might take a bit longer than most to make a recovery,Slim is 5 months past SCT and is only just starting to gain weight,and still is occasionally sick.
What sickness tablets is he on??? Slim had a few different ones,its hard to eat when ever thing taste awful,if you cannot get supplements down him,make sure he drinks a lot,milk helped Slim.Even now he drinks a couple of litres a day.
it must be hard with having to go back to work,I use to cook food,then he could not eat it,Slim did not touch meat for a long time,I would carry on with what you are doing give him things he can eat,try not to worry about the weight loss,you will find the hospital unconcerned,they know it will take time,just try to maintain the weight he has.Slim went to 61k,he is now 65,after 5 months.
You have the added worry of Dialysis, so fluid in take must be a worry.
I hope you make full use of people around you,because you will have to nag Ivan just to make sure he drinks,you could get the district nurse in she will help with supplements and any equipment you need.Eve
Hi Jean
Sorry can not help with the low temperature, but Slim had swollen feet,as Tom said you can get socks with loose tops it helps,I use to use Coco Butter Milk on Slims feet,a massage ever night use to help,got the circulation going,swollen feet are painful.Needs to get those feet up high a pillow under his lower legs of a night,but make sure his heels are not on pillow,.
I am not doing very well with our Scrabble Jean,I have 6 games on the go,and for some reason,everyone of them,is turning out bad,think my % marks for winning are going to plummet,your game is interesting as some of the words you are useing I have never heard. Love Eve
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
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
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 they do stage MM,its a mixture of bloods,Kappa light chains bone damage.:-P
There are 3 stages and I worked out my husband is at stage three because
He had,AKF plus Hypocalceamia (spelling)Tumour on spine plus breaks ,lesions on shoulder Blades plus on his Skull all spinal bones and ribs effected, sounds awful,I asked for copy,s of MRI scan plus kappa ;light chain results,after the first treatment CDT,the MM had gone up to 80% in the bones. I also get bloods every month.What you have to remember is all of that is damage caused by MM,get rid of the MM the damage is still there.You can understand why,they try to keep info to a limit,they do not know how you are going to react, once they realise that you keep up to date and not panic they will be more forth coming.If you do not ask!!!! plus you are not the patient!!!!!!
Slim also had septic pneumonia which damaged his lungs,left him with holes because if oxygen cannot get to lungs tissue dies,and leaves holes
Now for the good bit,He has got through all this,remission on Velcade,had SCT in May of this year,his last BMB showed no active MM cells at all in bone marrow.complete remission.00000,as you can guess after nearly 2 years,this is wonderful news.
So no MM but the damage is done,he lives with pain,and can no longer do things he use to do,but he is alive.
So staging does not mean nearer to the end,just means more complications.Get those books or search FAQ learn as much as you can,I live with a man that does not ask questions just get on with it,not a bad thing,it is the way he has chosen to manage MM,It works for him. Eve
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 what your situation is,but if you look at the long term,it is all going to change,
I would suggest you get in touch with the Mac milan nurses find out how much financial support you can get,and start to look at what the future holds.Some times its better to be prepared and know your options,I do not think any of us,go back to the life we new,we just adapt .Love Eve
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 asking.Learn what side effects to expect then it will not seem scary,take your Dex in the morning as you will find you get a bit hypo.Rest when you can.Eve
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 infection.
Good Luck,will not be long before you are home .Eve
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 strangers,then you know you have hit the buffers,a little white pill helps to keep your emotions under control.works wonders.
If you look at your feelings logically you are mourning,and it is understandable,this illness has taken so much from you and your family,so you have to work you way through it,it will pass,you will find out who your friends are,you will survive this,and believe it or not come out of it a more understanding person and a stronger one.Love Eve
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 hospital. Better to be save than sorry . They might decide to reduce the Thalidomide to half does and have blood thinning injections,wait and see what they say,no use worrying about it.I can only say being on the trials,gives you access to the experts in Myeloma .Eve
