This topic contains 17 replies, has 11 voices, and was last updated by 
annd 11 years, 11 months ago.
Hi,
Husband 67 diagnosed with MM end of Jan 2012, never heard of Myeloma, we soon found out though, he still isn't very mobile, in bed mostly, had op end of Jan on T7, had to have an extra weeks break from chemo, was too weak to get into clinic.
As a carer I do find it very difficult sometimes, especially as he was a very active man, mountaineering, cycling, swimming, just to name a few. I have now become the main decider in the family, it would be good to sit down and have a good chat with someone outside of the family, just for support and to give me a clear head to carry on. G
Hi Gail
Reading your post,it could me writing it,only the year would change to January 2011.So you are not alone,you have joined many other people on this journey,because the carer has no choice,and some times is forgotten,because everyone worries about the person who is ill.
I use to worry about my husband,being very confused,plus lots of food being refused mainly because there taste can change,from asking for something,then tasting it.There world has suddenly got very small,and things that he would have not bothered about before become more intense,plus the tablets can cause anxiety,in time you will get use to it,and you will be able to sit down with him and explain your worries.
My husband is 67 and use to be very fit,he has aged plus lost a lot of weight and 5 inches in height.I will not get back the man he was,but he is alive and doing fairly well.He goes in for SCT on Sunday,so we are very grateful for this extra time.
You do not say were you are,but i am sure Ellen could fix you up with some one near you,it does help as only people going through this understand,so I would either tell people on here were you are,or ring Ellen.Eve
Hi
This too could be my story, my husband was diagnosed May 31st 2011 after being ill for 5 months with lots of severe back pain, he ended up having to crawl around because he couldn't walk.He had to have verboplasty on 3 vertebreas, I had to give up my work to care for him and also to run our business, we have a cattery. Peter became extremely confused with chemo brain, his taste buds continually changed, his moods and emotions were up and down and he also lost 4 inches in height.I agree with Eve,as a family we will never get back the husband, dad and grandad we had before Myeloma struck, but we are grateful for every day we have together. I had a great circle of friends and family around me, but we were also given a fantastic macmillan nurse to help and support us and still does to this day. Peter had CDT and a stem cell transplant in December 2011 and he continues to make a good recovery.Take time out for yourself, i know its not easy to do but i had a day a week to myself to do whatever i wanted to do.
Take care
Pat xx
Hi, Eve and Pat, Oh my goodness you feel all alone through all of this, I cannot thankyou both enough for your kind words and how very similar our experiences are.
Howard was also in severe pain for 4 months, it was only my insistance to the doctor that he went to hospital for tests that this came about.
It certainly is hard to watch the man you married change, and as you say we must be grateful for the days we have together.
Howard is about to have chemo for the third month, he is on the trial, when do they decide he will be ready for SCT, and how intense is this.
Thankyou both so much for replying, I now feel I can get help and vent my feelings to people who understand.
Very grateful, Gail xx
Hi Gail
I also am a career. My husband was diagnosed at age 57 that is 8 years ago now.It is not the easiest roll in the world and I so wish I had found this site back then. I was so worried in the begining all through the back surgery the SCT and the trial, then when the meds kicked in I was mad. How dare this person treat me and talk to me this way and upset the children and neighbours. After a while we realized he was our little junkie and we just went along with what ever, often not even telling him things as it would start him off. I just wish i knew it could have been talked over and explained to me back then,so please go for help and guidance to help you understand.
We did have 4 years in remmission when we almost forgot about MM except the dex days so all will be well and it's a new job for you and if you can get your head around that and not hanker for the old life it will help.
I went to yoga classes given by the cancer society so every one there was in the same boat so a few tears, some bad days, were just taken in their stride and it felt so good to be with people who understood everything without having to say stuff and put on a smile and say all is fine when it wasn't.
I wish you the very best with adjusting to your new role in life and hope you have a long remmission granted to you soon.
Love Teresa.
Dear Gail
Sorry we have had to welcome you to the site. I do hope you find it helpful to be able to share just how you feel. I am 67 yrs and I am the one with MM. I do feel for my husband as he just has had it all dumped on him. Same as with all the caregivers. We are so fortunate to have loved ones who do care. It is a hard journey for all of us.
Best wishes to you and Howard.
Mavis
Hi Gail,
I, like the others, know what your going through. My wife was diagnosed July last year and started on the trial late September.
It's not easy to see the person you love become moody, not eating, irritable, and seeming to waste away in front of you.
Don't take things to heart when they say things to you that you think hurt, it's not them just the medication. It will be a bit of a slog but every day I see Etta getting stronger and back to her old self. You MUST make time for yourself in all this, it's so easy to put your own life on hold but sometimes those days or hours away can be a real boost for you. Trust me I've been there!
I see you are into your 3rd month, a time when it seems the meds kick in a lot I found. Just keep your eye on Howard, remember that you know him best and you will know if something isn't right. Etta went through a stage of eating less and less, and I cant stress enough how much he will need to keep mobile, those Dex's really take their toll on the muscles so the more active Howard can be the better.mid in doubt just ask on here on check with your specialist nurse.
Keep smiling if you can.
Craig
Hi Gail, Just wanted to hallo and welcome (?). You have come to the right place you will find bags of support and people who know exactly what you are going through.
I was diagnosed in Jul 09 and have had various ops and a SCT. At the moment I am ?Stable? or on a "Plateau" my PPs have been at or around 2.3 for the last 15 months. My wife, Mo, of 50 years and I are enjoying the time we have been given and I have made constructive use of my days in all sorts of ways to try to make Mo?s life a little bit easier when I am not around to Mow the Lawns! We are off for a couple of days cycling in the New Forest.
Kindest regards ? Vasbyte
David
Hi,
Thankyou all so very much, I really feel for you all in your different circumstances, as a carer I don't feel I have the right to complain, especially when I have in front of me a very sick man trying so hard to come to terms with his life being put on hold.
I now feel I have a place to come for information, or just to vent my feelings to enable me to carry on.
Thanking you all again.
Gail x
Hi G
So sorry you had to join us but there are lots of good people on this site who have lots of experience of just about every emotional and practical aspect of coping with MM.
It´s nice to know that you can always come on here and ask/say the things that maybe arn´t quite so easy with family and friends. I really have found it a real support during the last couple of years. You ask away or simply have a moan – everyone really does understand and is on your side.
Best wishes
Carol xxxx
Hi Carol,
Thankyou for your support, I now feel I have a place to go when the going get's tough. I have had really down moments but you have to stay tough for them, I would never let Howard see how it is affecting me(not just yet anyway)he has enough on his plate at the moment.
I can't thankyou all enough, it looks like I'll be a regular visitor on here.
Love Gail xx
No Problem Gail I think your very brave to be coping so well.
Take care of yourself too and try and have a little treat every couple of days – even if it´s only a chat with a girlfriend or doing your nails!
Love Carol
xxx
Hi Gail
Well I thought I had replied to this one?? might have gone into cyberspace?
So A Warm welcome to you and Howard, you have got the good group and you will find the folk on here very good for info and a cyber hug as and when (well even when you feel you dont need it) you need it.
Love
Tom "Onwards and Upwards" xxx
Hi Gail.
Welcome to the forum. I was diagnosed with MM October 2011 – 3 days before my wedding so my wife has been a carer since we married. Not a nice start to married life! I think it can be easier for the suffer than the carer at times.
Feel free to ask ANY questions on here come along for a moan a shout a scream! You'll always find an ear or two and lots of support.
Take care
Andy xx
Hi Carol,
Yes I will take your advise, I feel when I have to go out I rush round thinking I have to be back quickly.
Howard is never left on his own, so I need to back off a bit and have a coffee and just chill.
We are off to the Macmillan Unit at Blackpool today for his third cycle, could you tell me when they decide he can have SCT.
Thankyou again for your advise, and you take care.
Love Gail xx
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