My hubby was diagnosed 7 months ago with MM. For the most of that he has had to sleep in a single bed in the living room as his mobility was affected by lytic lesions on his spine, ribs and back. Last Friday we had a stairlift fitted and he was finally able to sleep back in our bed. Now I have missed him so much at night and love him to bits but it struck me last night how much I had gotten used to having a little time to myself at night when I came to bed. I have along list of my own health issues so being there for him has been a hard road for me. Now Iam going to have to find a new way of finding me time and that is not easy. One thing that has helped me is keeping a journal. Every night when I went to bed I wrote what sort of day I had had. I have so far filled 2A5 books both of which hubby has read. I am struggling at times and although he is getting slowly more mobile at times I just want to shout to the world what about me.
Hi, When I was on treatment and recovering from SCT I have always been mindful that this is my disease and whilst it inevitably affects the family I have tried hard to minimise its impact. I always used to plan little treats for me – even a coffee with a friend – to brighten the day and I think partners should do the same. As soon as I recovered sufficiently from SCT my hubby went abroad doing his hobby – I know at diagnosis he felt his life and future, as he knew it, had ended and he would never do these things – but he does and is all the better for it. When I was on treatment and my daughter wanted to travel abroad doing stuff they went with my blessing and had a great time – life must not stop – do not let this disease take your life away without a fight. I have a friend who’s husband has had a terrible time with another cancer and she got so depressed she took an overdose – and she was the well one! You must find “your time” be it a new interest, craft work, coffees, pamper sessions, quiet time in the library even – anything away from the myeloma bubble. I am sure your husband can be left on his own for a little time at least. It is refreshing for both of you to have something separate, that’s yours, to do and I am sure your husband would welcome this as he no doubt carries a lot of guilt at the impact this has had on your life. I would suggest you actually write a list of things you would like to do that would brighten you life and reckon on how much time you feel comfortable leaving your husband alone. It is doable if you want it enough and would be good for both of you. Good luck
Myeloma has a major effect on carers,it is wise to know what to expect as the years pass and learn to come to terms with it,as the years go by you do learn to accept and come to terms with your husbands illness,so try not to look to far ahead as nature will take it’s course and as time goes by acceptance and a form of peace follows.
On a more personal note I would not have missed one day of the last 3 1/2 years,I find it very difficult to leave my husbands side and have become very protective of him in every form but this is a personal thing you have to find what ever is best for you, we are all different and as carers we handle things differently.there is no right or wrong way,just do what ever you have to,to keep yourself in good health
It is very early days for you,your husband has problems with his movements!!! As treatment progresses there is a good chance this might improve,in the years we have lived with myeloma,my husband has used a wheelchair when needed but most of the time managed to walk and this is very important excise is a must!!!!
As for your own space be honest with him,tell him,if he likes watching sport on TV plan time out,I found my dog very useful he needed walking twice a day,as Slim improved he came out walking as well,now I have that little space to myself again,so walk the dog when the carers come in.
I hope this helps you on your journey,why worry about tomorrow and spoil today.Eve
Mood is back to normal now. Thank you for your support. My husband and I are a very close couple, always holding hands, even on the sofa. I too would not want to be anywhere else , I will be at my husbands side throughout. We have only been together for 8 years and got married in August last year. So the cancer hit really hard. As for me time, I love sport as well and enjoy watching it with him. I am thinking of typing up the journals I keep taking out names and I might in the future self publish on amazon. If I can help 1 person with what I went through then it would be worth it