This topic contains 10 replies, has 9 voices, and was last updated by 
Philipandfiona 10 years, 8 months ago.
Hi. I am a newcomer to the forum. My husband was diagnosed three months ago and is now into cycle 4 of CDT and has undergone surgery on a massive 8 vertebrae. I am struggling to hold everything together – we have two children 5 and 2, our own business (just the 2 of us) and I have a previous health issue requiring significant surgery. How do other people stay positive – and keep their partner feeling positive. I am just really finding it hard to accept that nothing is ever going to be the same again and all the things that have been so important to us now and for our future life are not going to happen. Any advice on with this whole cruddy situation would be great.
You have to stay positive and take one day at a time. Your husband will get mentally and physically fit. It was very devastating for all of us when first diagnosed. I was obsessed with end of life on this site but you will find good information and friends.
My husband had a compressed spine and needed a spinal operation. Contracted sepsis and a huge bed sore. Just home from hospital after one year. Had Cdt but had to stop at cycle 4 to let bed sore heal. Light chains slowly rising but has had no treatment since April. Ian was very weak but his muscles are growing and now walking with a zimmer. We can only hope he will get a good remission.
My faith gives me comfort.
Maureen
Hello
I am so sorry to hear your husband is suffering so badly and it must be so difficult to try to keep everything together as well as supporting your husband. It is so cruel when you also have a young family. I felt I had to reply to try and offer you some comfort and hope for the future.
I was diagnosed in May 2011 with kidney faiure and a tumour in my neck and 9 broken vertebrae. It was all a total shock, I was told I had just pulled a muscle in my neck initially. My para proteins were 67 at diagnosis. After intensive drug treatment, radiotherapy on the tumour and an operation to remove as much as possible and stabalise my neck, head and spine with metal rods, I then had six courses of cdt and a stem cell transplant in February 2012. I thought my world had come to an end, but with the support of my family and positive thinking throughout I can henestly say I am enjoying all life has to offer, I am drug free and have been since April 2012. I am in complete remission and pain free. Yes there are things I can't do, such as lift my grandchildren for a cuddle , or turn my head either way, but life is so precious you have to try and remain strong. I thought I would never be able to do any thing physical ever again but your strength does return. I have had holidays, just hosted a large family dinner, doing all the cooking myself and enjoyed every moment. There is light at the end of the tunnel, although everything must seem so black at the moment. I know it must be so hard for you with such young children. The treatment available is getting better every month . I hope you can take comfort from the fact that I have come through it all at I assume a much older age so please try to remain positive as I realy do think that helps everyone. My husband did struggle with the diagnosis and had counselling which he said helped, perhaps that is a route worth investigating. Macmillan nurses can help with that. Even though it must be difficult but just an hour or so away from all the illness and time to your self would give you a little boost. I will be thinking of you and hope you have the positive result that I have had.
Take care
Liz
Hi
i felt i had to reply too. I too have a young(ish) family – my children are 8 and 11. My husband was diagnosed 18 months ago following a snapped femur, had 4 cycles of CTD and an auto transplant and we are jsut now starting on round 2 as he relapsed after a year.
I can only speak from personal experience here, but i think you need to ask your husband what he needs from you. I doubt he needs or even wants superwoman. he wants his wife there supporting him and the family. it is really really hard to watch someone you love go through this and to feel so powerless, but i am sure your love and care for him is doing him the world of good.
throughout the last year and a bit i have been told by various people (who have had the wonderful good fortune never to be put in our position) that i have been brave. stuff brave, i'm just getting on with it. with small children it is impossible to pull the covers over your head and give in. it does nobody any good to wallow in self pity. i don't mean to be unsympathetic at all – quite the reverse.
i have had days where it has been hard to get out of bed, i have had times where only very loud music in the car can drown the sobs but…. you only have a finite amount of energy. Decide how you are going to use that best.
Do not be afraid to ask for help. others will want to help. there will be many friends wondering what they can do to help you – let them. it eases the burden on you, and in a strange way it helps your friends to do something.
and never underestimat the power of a good cup of tea / glass of wine / bar of chocolate / belly laugh with friends.
and good luck xxx
My husband is the carer and it is very hard on him. I'm "only" smouldering but also have severe rheumatoid arthritis. Got diagnosed with both when our sons were only 3 months old – they are 6years now. Good news is that it is working sufficiently well, but the bad news is that it drains the carer. The things I've needed the most from my husband is for him to ensure me that I don't have to feel guilty for "making him work so much more" and for not doing my share. Knowing that is is ok to stay in bed when I have to and knowing that he is ok to do my bits helps so much. Last year I more or less isolated myself from everyone – incl husband – since I could not take people talking to me about serious stuff (=me being ill) or unimportant stuff (=normal chit chat). I should probably say that I didn't isolate myself from my kids. My husband let me do this and after a year of having my head to myself (and lots of breakfasts in bed thanks to husband!), I pulled myself out of it and returned to the living world. I got sufficient distance to others and my own illnesses to move forward and get on with my life. I feel stronger and stronger, and although my husband wasn't sure at first whether I was really back, I think he now sees that I am much more "present" and much more in control of things. MM has had a profound effect on our family (minus the kids who are oblivious). I have no idea how my husband managed to find the strength to let me do what I had to do. I suppose what I am trying to say is that even when it all seems impossible, there is actually quite a bit of light ahead to steer towards.
Bella xxx
hello
Its so hard when you first get that diagnoses for both patient and carer {im the carer)i remember looking at my husband and kids and realising nothing was ever going to be the same again and just breaking my heart. My youngest child was only 3 at the time, that was three and a half years ago and its been arollercoaster but i can honestly say although life may be different than we expected we have lived life to the full together making the most of each day. we have done things and went places that we never would have befor myeloma. i supose you realise how precious life is. Dont be too hard on yourself its only been a few months and some days will just be about surviving, getting through. but dont worry you will smile again you will have fun days and holidays also sad days and weepy days. on those days the people you love will give you the strength you need to keep going. i guess what im trying to say is myeloma is an awful thing, of course your devistated both for yourself, your husband and your children. take things a day at a time and let your family and friends help when you need a break. i wish you and your wee family well in the midst of it all.
blessings, Rosie
Hi Flitterfly,
Apologies for not replying sooner but I've just read your post, Although we have just the one 6 year old and don't run a business our future has also taken a massive hammering because I was diagnosed with MM just 6 weeks after moving out to Germany, we have no job security, my wife started work Dec. last year, I cannot work, the doctors are very strict about that and I gave up my UK job to come out here, we have our daughter going through big change in her life – new country, new school, new friends so I can empathise how you feel. As for my wife, she is the carer and probably goes through far more than me because whilst I have the medical care, she has nothing. We have shed a lot of tears and both found inner strength, she a lot, me a little. Our motivation is our daughter, I'm 50 and have had the majority of my life, our daughter's life is just beginning. We wanted a better life for ourselves and instead we have a different life. We focus on the good things like the travel, new friends we are making and family. The bad things we address, we don't ignore them but we work to make sure they don't run our lives, case of making sure the tail isn't wragging the dog I suppose. I still try and do positive things like attend language courses for foreigners, I have a little job in an old peoples home, I still ride the bike and do the housework. My wife stays positive because that's her personality and she has had her problems here too. But by setting objectives, arranging trips and things to do at the weekends, it gives us some form of normality, it is us in control, not the MM. Hope I haven't rambled on too much.
Richard
Hi Fitterfly
You seem in a similsr situation to me, 3 kids. my husband was also so strong young and strong minded, and he very quickly changed, and its heart renching to see him struggling,Its been a year now stem cell done,2 spinal operations, still not in remission hes been made redundant!and all the way through it only had total 42 days of work !!!!What helped him was being kept focus working, even though he scared people being in work with the way he changed so quickly! He didnt even tell any one he was ill, however obvious something wrong when lose half body weight, your hair and your bent over in pain,when they finally found out 7 months later when he had stem cell, he had cancer they made him redundant, this is now whats killing him hes trying to be the man he always was, Ive come to terms that things will always be different, but thats the thing, its different, and you will both slowly adapt.
As long as your husband is getting the correct medical care from the doctors , the only other thing you can do is try and talk together,and ensure you make sure your mentaly ok, make sure you get a break if that means escape through work or a hobby or meeting some friends for a cup of tea, so you dont get depressed, remember you and giving time to you.I found that slowly making my husband do things for him self again, has made him feal better about him self, he goes for a walk to the pub 5 mins down the road and back every night for an hour so he can have some space to think, and always has done, even after his stem cell transplant,just to keep some of his old normality,also gives me time for me! things will never be nomal again, but we are both just starting to accept that, it takes time, try and do some nice things , so not consontracting what you cant do any more, so what if the house if a little more untidy! you cant do everything….little steps, start getting bigger, he will not want to see you upset,its hard but it does slowly start to get better, thinking of you..and good luck
Hi Sarah
Reading your posting,I think you do not know how strong you are,just to cope with this disease,and keep the family together,with all this worry,is an achievement in it,s self. So be kind to yourself.
I would say 3 months in to treatment is the worst time,the Chemo kicks in,the weight loss shows,fatigue is awful,so I can see why you feel,things are never going to be the same. I cannot say they will be either.Many people have a good remission,and go on to lead the life they had before,look at are lovely Tom,on wards and upwards!!!! , many do not but I can tell you that you will adjust,every one feels there life has been snatched away.
This will make you a much stronger person,take the attitude if we can get through this,!!!!,My own personal saying which is on my fridge,is why worry about tomorrow and spoil today.
As for your husband,while he is on treatment,he will look ill,the disease and Chemo,are responsible,he may never look the same man as he was,and no one knows what the future holds,we all know exactly how you feel,because we felt the same!!!,and we are here to help you. Eve
Thanks to everyone who has responded. It is so horrible that there are so many of us going through the same thing. I have pulled myself together and things are OK at the moment. He's finished his CDT treatment and has been randomised straight for SCT with a good partial response to the chemo. He starts the harvesting in a couple of weeks. Ironically he is looking pretty good at the moment. He had all 8 vertebrae cemented two months ago and is off crutches and looking much straighter. He has lost a lot of weight already partly due to nausea on the chemo and partly due to the diet the local cancer nutritionist suggested. The dietician has reversed the no dairy, lots of nuts diet and recommended high fat everything which is making a difference. Hoping to get a bit more weight on in preparation for the STC. His personality is back now that he is off so much pain relief which is lovely for the children as 'Daddy has come back'. We are learning – one step at a time. We have made some decisions about work. And we are looking forward to a good family Christmas together before things get a bit more stressful.
Hi Flitterfly, i thought i would just check in to see how you are doing? I hope you’re managing and had a good Christmas together, and that things don’t look so bleak from here now. x
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