[les24655Participant]

I’ve just been told I have Mysaloma last Thursday, although it was suspected before. It has come as a huge blow. It is terrifying. I was given a whole load of documents. Leaflets sbout the drugs I’m going to have. The Myaloma introduction from Myaloma UK, a hleath diary. They all seem to paint the future really badly. I know it is supposed to be managable but emotionally finding it very difficult. No hope……………. Can anyone help?

[rabbitParticipant]

Hi Les, welcome to the forum.

It is one hell of a shock to get a myeloma diagnosis. Many of us on this forum have been there – the rest are the loved ones of people with myeloma. In short, we have all been there in getting told something traumatic.

It sounds as though you were handed some booklets, were told you had cancer, and then the doctor walked off. Understandable for overstretched staff, but not a great bedside manner.

I was diagnosed at the end of 2022. Had chemo over the first half of 2023. Still in remission. Going on holidays, working, spending time with family. Going to a rock concert in a few days!

I was traumatised too for a few months, then I snapped out of it. Life is for living!

I won’t pretend that it is easy, whether in terms of treatment (most people get some side effects on the way), or psychologically (I still get low at times), but people can live with myeloma for a long, long time.

Happy to explain jargon, planned treatment, your blood test results, etc.

Regards
Rabbit

• This reply was modified 1 day, 23 hours ago by  rabbit.
• This reply was modified 1 day, 23 hours ago by  rabbit.

[les24655Participant]

Hi Rabbit, thankyou for your reply and encouragement and I will phone you later this week just to talk to someone with hope, not just a iist of awful side effectd!!!!!
To be fair, the consultant who confirmed I had it and what the treatment options are was brilliant, as was her staff. However in the build up they discovered I had a crumbled vertebrae which meant big surgery on my neck, and I’ve been wearing the collar since the date of that surgery – 1st Sept. Although the earlier process people kept saying it might be caused by Myaloma, but no-one said what it was (except google) and whether I had, and never mentioned the word Cancer. The neck problem at that stage was the priority, I guess.
I was fit and active, retired but working part-time. Busy, and the next flat on my back, and 2 months later facing chemo. It has been an awful shock, and my emotions have been terrible. My family – wife and two kids – have been fantastic. It just feels like I’m living in the middle of a shot show (excuse my language). It’s good to be able to scream this stuff off into the ether.
Will phone when I’ve got myself together after all the medical shocks.

Les

[davidainsdaleParticipant]

Hello Les

Sorry to hear that you have been diagnosed with myeloma, something none of us want to hear.

I was diagnosed in 2013 with spinal damage and have had various successful treatments over the years. It can feel like a slog at times but they say that myeloma is a marathon not a sprint.

You may find it helpful to speak with other myeloma patients so it may be worth seeing if there is a local support group near you. Macmillan can also be a useful contact for information and support.

Hope this helps.
David

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