This topic contains 14 replies, has 10 voices, and was last updated by 
Lynda 12 years, 2 months ago.
Hello everyone. My name is Lyn and I am carer to hubbie Pete who was diagnosed with myeloma November 5th, 2011(a date we wont forget in a hurry).He had been suffering on and off with a bad back for 18 months and we went to GP as things were not improving. We happened to mention that Pete had been suffering with night sweats which must have rung alarm bells as she did some more blood tests which found the myeloma.
For a few weeks everything seemed surreal,and we felt very,very scared. We realised that life was going to be very different from now on.Pete has had bone marrow done and has started on chemo,this being his 6th week. He has been amazingly brave about it even though he is having some side effects from the chemo. I have been up and down like a yo-yo. I seem to have days when I feel full of promise especially when he is having a good day. These are intermingled with periods of crying which I think is when I am feeling frightened and I feel so guilty when this happens.
I have read many messages of hope and encouragement on this forum especially from Eve that has given me the strength to do this and I hope that I will also be able to help others.
I know that 2012 is going to be a challenging year but i hope that everyone on this forum will be able to face it with courage, determination and hope.
Hello Lyn, I hope this doesn't sound a negative response to your message. My husband was diagnosed in 2000 and although the next 10 years (we were only given months at the beginning) were full of stress, anxiety and for him a lot of illness we also had 10 of the most fulfilling years of our lives. We knew every day was precious so we lived them to the full. He took on new projects which seemed impossible but he completed them. We travelled as much as we could during his remission. Even after his kidneys failed we holidayed in France and he dialysed there. He died a year ago and I miss him but I have no regrets. So all best wishes for you and Pete and enjoy your life together. Claudette
Hi Linda welcome to the group Nowhere will you find more support and first hand experience of myeloma from such a fantastic bunch of people! I am glad your husband isnt having too many problems with his chemo Although everything seems very confusing at first it does get better You will find that hospitals , treatment and everything that goes with it become part of your normality rather than a huge dramatic event in a fairly short space of time Dont be too hard on yourself if you sometimes need a good cry , we all do sometimes, there is always someone on here to help ease the burden for those times Wishing you both all the best for the coming year Bridget
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
Welcome (?) to the group Lynda. I suffer from Myeloma and my wife is the career however I just would like to wish you and Pete well, I am sure you will not only learn a great deal about Myeloma from this site but you will meet some really nice people.
Kindest regards – vasbyte
David
Hi Lynda
I too wold like to welcome you to the site that you would rather not be a member. I am a carer (hate that word) for my hubby and I have received tremendous support, advice and comfort from the wonderful people on the forum.
My very best to you and Pete
Love Jean xx
Hi and welcome. I have to agree with the others, the support you will get here is wonderful. I am a carer to my husband Phil. He was DX 2004 at 30. He has done well but the past year MM has been taking a toll. The feelings you have are so normal. You will have good and bad days just like he will. Phil was just admitted into hospital for the 2nd time this week and tonight I'm taking it harder than I was the other day. Some days just effect you differently. I started a support group in my area and would recommend finding 1 near you. They can be a great way to find out about how things have effected others, different treatments that are starting, what to expect at appointments and just to talk to others that can relate is wonderful. Also, don't forget to take time out for yourself. being a carer can take a toll on you as well. You need to be "healthy" as well. Even if it's just meeting someone for a coffee for and hour- take the time… You may feel guilty at first (I did) but you need to be able to take that deep breath.. I hope all goes well. We're all here if you need us. All the best and keep us updated…
Chelle xx
Hi Linda and Pete
Like the others A warm welcome to our little group.
Yes its a daunting thing being told you have MM then told it is a Cancer:-( but take notice of the new treatments that are on the way every month we seem to hear about this and that new treatment
May I just say never ever feel guilty about your tears or feeling down all I ask is to pop on here and sharre it we all can and wil help you and Pete through the bad bits and also smile at your good Bits, if you feel like a rant do it on here if you need to share some good news share it on here.
Wishing you Both a good journey.
Love Tom "Onwards and Upwards" xxx
I just wanted to say Thank you to you all for answering my post. I was blown away by the fact that people had taken the time to reply especially when I realise that you all have your own problems to deal with.
All your replies have given me encouragement and most of all hope for the future. I realise now that we are not alone in trying to cope with this.
I hope in time that Pete will come on the forum and talk to you guys too.
I will keep you all posted and of course try and give support where needed.
A very Happy New Year to you all
Love Lynxx
Hi Lyn
Just caught up with your posting. Sorry you and Pete have had such a difficult time and then eventually getting the mind blowing diagnosis of MM. It is such a lot to take in. After just over a year into all this I am just beginning to appreciate just how hard it was for Gordon when I was first admitted to Hospital, had emergency surgery and then the diagnosis!! I say this so you won't be surprised if Pete doesn't get it about how you feel – and no doubt you are trying not to show it.
One thing, this does all bring you closer together if you let it and, as someone else said, it does make you value each day.
May 2012 be a much better year for you both.
Mavis x
Dear Mavis
Just wanted to say Thank you for your message of support and good wishes.
I am blessed that we are a close couple anyway, but this has made us even closer and your message to value each day certainly rings true.
It certainly sounds as if you have had quite a year, but I sincerely hope that 2012 will be a good one for you and Gordon.
Lyn xx
Hi Lyn,
I care for my wife Etta and as many of the others have said, it's not easy and there are times when you wonder how you will cope.
Me and Etta are very close and I've found the best way is to be honest with her about everything. There came a time with her treatment were she was practically a pill popping zombie and it was breaking my heart, but I just kept smiling and trying to keep positive for her.
She is currently off her meds as she wasn't eating, lost almost 4 stone and ended up in hospital in December. Now she's like her old self again! Slowly learning to walk as the steroids just wasted her muscles away, eating a lot better and drinking too.
She gets down about "not being able to do anything" but I keep pointing out where she was a month ago, a week ago etc and telling her just how far she has come which seems to help a lot.
One thing I would say, if Pete is getting depressed than ask to talk to someone about it. Etta went to see the specialist psychiatrist (psychologist? I always get those two mixed up) and that did her the world of good, she's also on a low dose of anti depressants which once they kicked in have been great!
As the others have said, you HAVE to take time out for yourself. I poo pooed this at first thinking yeah, right, but by god you need it after a while. Even if it's just an afternoon to yourself where you know you don't have to rush back.
Also if there are any support groups for carers in your area then get in touch with them. They're full of good information. Don't think you can do any of this on your own, help is there. Sometimes you have to fight to get it, but it is there so use it!
With the emotional side of things it can be hard. I've had a few good cries, sometimes together, sometimes alone when she's asleep. It's hard but you pick yourself up and carry on. I know that Etta got upset at one stage as she said I wasn't getting upset about her illness, but I explained to her that me crying all the time in front of her was not going to help the situation any and that I do get upset but try not to let her see it. Don't get me wrong, we still have the odd cry, when she saw how much hair she had lost that really upset her even though I had been telling her how thin it had been getting over the weeks, and that set us both off!
Mostly though it's my positivity that seems to bolster her through the rough times. Trying to focus on how much she has improved rather than how bad she is is one way I look at things. Also having goals as well. I know it sounds odd but actually going out to the shops complete with wheelchair, head scarves, red book, drink, tissues, phone, you name it she made me carry it and we only went out for 30 mins!
But now we do this 3 or 4 times a week for longer and longer periods and she can see its not scary, or hard and the panic is lessening after being cooped up inside for so long.
Anyway, I think I'm rambling here. Basically what I'm trying to say is it's not easy, there will be times when you wonder how you can carry on, but you will. Just think of the good times to come and if there is support there, use it!
Love,
Craig
Hi Craig,
Thank you so much for your reply.Your encouragement and advice has lifted my spirits and I have dusted myself down,lifted myself up and am more ready for the challenges ahead!!!!
Etta certainly sounds as if she has been through the mill the last few months but I am glad to know that she is improving with all your love and support.
Pete has improved since I last posted(dont know where the time goes)His back has improved and I have gradually weaned him off the morphine drugs and diazepam that was making him like a zombie.He is about a month behind Etta with his CTD.Apart from Steroid highs on Tuesday and the inevitable tiredness he seems to be coping quite well. The Doctor has just upped his Thalidomide to 100mg from 50mg so I hope he will be o.k. on that. We will just have to see. Went to the hospital on Tuesday last for the initial visit for stem cell transplant. They all seemed very nice and the Specialist took his time explaining the procedure even though he was running very late. Have another appointment in March in which they will go into it in more detail and pending Petes paraprotein level will discuss dates for collection. I am totally amazed at what they can do and appreciate that we are lucky to have that chance, but I must admit to being overawed at the enormity of it if that makes sense. Pete is now just saying "Bring it on" which is great but because i have researched it I know how awful he will feel initially. But in the long run its to hopefully get him back to enjoying life and thats what I have to think.
I hope Etta continues to feel better so that you can relax a little too.
Please keep posting and let us know how you both are doing.
Love to you both
Lyn
Hi L yn its so good to hear that Peter has improved , it must be a huge relef for you . The stem cell transplant is scary but try not to get too anxious , there are lots of us on here who have gone through it and although its not the most pleasant time it will get better The benefit of having a long period of remission without the need for treatment makes it worth going through Having just read both yours and Craigs posts it brought home to me how hard it is to support a partner with myeloma . I am sure Etta and Peter feel much better just knowing you are there for them. I know I would be lost without my husbands support Like Etta I get very frustrated at not being able to do things I used to and poor Jeff sometimes bears the brunt of my frustration. I agree with Craig about being honest , I know Jeff will always tell me exactly how things are , good or bad, whereas other relatives are not always able to as they are worried I will be upset My advice to both of you is make some time for yourselves too Go and do something which has nothing to do with myeloma or hospitals whether it is walk or shopping or a hobby You need to have a break and I am certain it will make Etta and Peter feel less guilty at being responsible for putting you under pressure My husband goes out for a few hours on Saturday evenings and will go to the cinema ( I dont go as the seats make my back very painful) and I am much happier knowing he has some fun love to you both Bridget
Hi there Bridget
Thanks so much for replying to my post. I have taken on board what you have said. I used to work in a busy pharmacy seeing lots of people but most of all working with a lovely bunch of girls. I finished after 10 years there to spend more time with Pete in September last year only for him to be diagnosed with Myeloma 8 weeks later. I think I must have been psyshic as there is no way I would have been able to have carried on there the way Pete has been. Hopefully going to get a weekly get-together sorted soon which will keep me going!!!
I do hope that when Jeff has his Saturday evenings at the cinema you manage to do something nice too.
Love Lynx
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