Multiple Myeloma

I was diagnosed with monoclonal gammopathy of unknown significance (MGUS) back in November, I had a routine blood test due to my Osteoporosis. I had bone marrow biopsy, MRI and Pet Scan very quickly, all three completed by 1st week inJan.
On return to Consultant in Feb, I was told that my bone marrow had shown up 10-12% of the naughtiness :joy: ( not that good at the technical stuff)
My consultant and McMillan nurse then explained that I now have Multiple Myeloma. I am still processing it, I try to put it in a box and keep it under the stairs but it keeps popping back out to remind me.
I am in the watch and wait zone, I am waiting for our second grandchild and try my hardest not to think I may not see them both grow. I am a young 66 and we generally enjoy a good social and family life, but those dark moments!
I have been through the stage of guilt as there are so many much younger than me, but on those dark days it doesn’t help.
I found this support group on you tube and after reading others posts I am very pleased to have discovered it.


Hi @Offroader55 I am so glad that you have found our forum.
I was also diagnosed through a routine blood test in another dept. in Dec 20 yrs ago, at 53 yrs old.
I came home and wrote my will and funeral music.
I was in shock for ages and worrying about the ‘what if’s, when if’s’ etc.
I think I had the same Jack in a box as you.
One of the bonus’s of our forum I that I can say how I am thinking and feeling on here and know it is OK.
I have always been on watch and wait, I think I am a very lucky girl and my 70th birthday, just before Covid times hit was my best ever with Colin the caterpillar cakes.
Perhaps just try and accept those feelings as natural and yes. I also get survivors guilt.
I did benefit from some counselling.
Just be very kind to yourself and try to take it a day at a time.
Try and enjoy your 2nd grandchild and please do keep posting how you are


Good Morning Erica,
Thank you for the lovely response to my first post.
Just listening to somebody in the same boat is very encouraging and good for the old mental health! I am so glad that I have found this support site and can share my feelings to people who feel the same.
Enjoy your Easter.
Kind regards,


Hi there

Myeloma is very treatable but not curable
I’m living with myeloma it’s been 7 years so far
My kids were my focus for living
Please if anything take this diagnosis as a will to live every day and make memories as time is so very precious
I live with myeloma I don’t fight it as fighting is negative and it needs a lot of energy
Living is kinder and less energy

Boxes have a tendency to flip open
Ask your team if you can have some counselling to process what’s happening I found it invaluable
Try not to make it the elephant in the room and get support from your family
I was given a booklet and I handed it around friends and family so they could read at their pace and invited them to ask questions any I couldn’t answer I asked my team
Take the control away from myeloma and back to you.
Make the most of this time being treatment free
Many of us are living well with myeloma some for more years than myself

The 10-12% of naughtiness is the amount of myeloma cells in your bone marrow
I was 75% on diagnosis as a comparison and myeloma found by chance after being admitted to A&E my myeloma had been active 6-8 months without anyone knowing
It’s really good to see that you are being monitored

I’m going to link you a myeloma uk guide


Hi @Offroader55, @2DB, @Erica.
I like your response 2DB. I have Waldenström macroglobulinaemia (WM) but for a longtime in monoclonal gammopathy of unknown significance (MGUS) given as Multiple Myloma.
Neither are, as you say curable but neither is the common cold (hope that’s not to flippant).
With 40 years remission for Hodgkin Lymphoma I have lived my life to best I’ve been able including a full 50 years of work paying my NI.
We are all different in both body and mind and that must be respected. My personal approach has always been as taking it as a sports-like challenge with a great Consultant manager and support team in both family, friends, the NHS and Forums such as this.
As Stephen Fry promoted on TV “Say Blood Cancer”.

Hope all goes well for you and yours.


Thank you 2DB, joining this support group has proved to be a very good move. I’m finding so much positive feedback it is doing wonders for my overactive brain!