Welcome to the forum, although I’m really sorry to read about your wife. I can definitely share your sense of shock about the diagnosis. I was 36 at the time and pretty fit, although I wasn’t looking after myself as well as I should have as I was working hard in trying to get a promotion. I’d been getting a few colds and night sweats, but hadn’t remotely imagined it was cancer, then over one weekend I got a massive blood clot in my leg, followed by 10 days in hospital, loads of tests and finally a diagnosis of something I’d never heard of. Then you read the book they give you and the first line says it’s incurable, and then the world crashes in for a bit.
But now, after a difficult 18 months or so, I am now nearly 6 years in, over 5 years in remission and to all intents and purposes living a good and healthy life. I’m really hoping that your wife will experience the same. Yes, there are horrendous times to get through, but there is lots of hope too, and perhaps the best thing I can say to you two months in is to keep your head down and keep ploughing on. And use this space as and when you need it, it was a great source of support for me.
Oh Greg. Thank you so much for the mail. Your words have cheered us up. We were spoken to by a young Dr and he said, I’ll give you the answers first before you ask me. He then went on to describe what it was which went over our head then the real bit. It’s a killer that you will die from. There’s no cure etc etc.
course then he mentioned finding remission and when they said good day/bad days they definitely meant the bad days. We are slowly getting our heads round it but we also realise it’s a Hell of a journey unless you get a bit better slowly whilst having the tablets?
But your remission is very good news and gives us hope.
I’m glad my words helped a tiny bit in what I know will be a very difficult time for you both.
What you wrote about your wife’s doctor reminded me of what my doctor said to me on diagnosis. He said, “my job is to keep you alive long enough that you die of something else”. I thought it was an odd thing to say and not something I really wanted to hear at 36, but the more that time goes on, it has stuck with me and the more I think that he is right. Myeloma is much more treatable now than it was 20 years or so ago, there is so much hope in terms of what might be developed in the future as well.
In terms of good and bad days, my memory is getting a bit fuzzy (which is a good thing!). I remember the initial period being really tough as your body is trying to get used to the treatment and your mind is trying to get used to what has happened. It is not a linear trajectory and there were many bumps in the road, but I would say that hopefully you will be getting more good days as the treatment starts to do its job.
Greg you’ve cheered us up already as the professionals don’t really know how scary it all is.
I sort out all the daily tabs and an injection and Anita suffers from lots of sickness so wasn’t sure if I was killing her or helping with a cure. Course your measured on your blood results so it’s not a lot of hands on.
luckily her bloods looked good after the first 3wks of tablets so it’s given us hope.
i can’t tell you how much your journey has helped.
Have a great Christmas etc and hope I can still check in with you?
Merry Christmas Greg and thank you for your help this last almost three years. Sorry you have to be here John but welcome. Best wishes June and Gordon.
Hi John. Greg has been a big support to us. Our myeloma journey began three years ago and it’s been difficult but we are still here. My hubby is too old to be considered for SCT so it’s been chemo for him but for now that has ended simply because it’s causing more problems than solutions. He is so very positive and together we find joy and laughter in our lives. My advice is to use all the resources available to you but don’t overload yourself with too much. I just read and researched what we needed as it occurred. Have you visited the Myeloma UK site? Do take care of yourself and Anita and if you think I can help at all message me. June.
Hello June, we are like you and there seems to be nothing like news from other sufferers.
what a cancer hey. Anita’s body deformed in a few short weeks. Her backbone bent over to the right and a large hump grew on her back also her sternum started pushing forward and remember now she was still having tests on her heart and her pelvic area which as prior to this she was very fit. Course I got Covid and all we had was morphine for Anita and nothing for me so we were 2wks in total isolation.
Those were so bad as we are old enough to remember when the Dr came round to give an increased amount of morphine till you pass away and I was so scared I believed that was the job I’d been given.
now Anita is having the trials on the American way to deal with this and she has only been on it 4wks and it seems to be working. That was a miracle as Anita suffering from terrible sickness and can’t eat so lives on ensure drinks.
but I encourage her to eat bits as she has lost so much weight etc.
we are trying to be positive as much as we can be and hopeful.
so pleased years are passing for you which itself is a start. How’s hubby doing with the chemo, and how are you dealing with all your plans for a completely different retirement?
we see people our age or older walking as we did yet that’s only a dream now.
