Diagnosis of myeloma

Hi Darren,

Welcome to the forum, although I am really sorry for the reasons you had to post.

It is so hard to know what to say to any one individual who is diagnosed with myeloma, as everyone is different and myeloma can affect everyone in different ways. However, here are a few things that might help:

1. Steroids - I am assuming you are on them as part of your treatment cycle? I was on dex, and it is known to cause mood swings - feeling high one minute, low the next. Happy one minute, angry the next - I’d let your family know it might be the dex talking and hopefully they can give you some leeway - it gets better once you are off it.

2. Use this space to vent, share emotions, say those things you don’t want to say to your family.

3. Counseling - mention how you’re feeling to your medical team - they should put you in contact with some professionals who will allow you a safe space to talk about what’s going on for you and hopefully help you to process things in your own way.

4. Acknowledge that unfortunately myeloma is here for the long haul. But it won’t control your life. There will be a time when you’ll put it back in its box and regain some kind of normality again. And also, you’re never alone in this - there’s lots of people here who will have been in similar shoes to you and are here to help you as you get through it.

I really hope these help in some small way.

Greg

Many thanks for your kind words and for taking the time to reply they mean a lot 

Hello Darren

I'm not surprised you're still trying to come to terms with your MM diagnosis. It's a lot to take in and can be quite a long scary journey to get to diagnosis. So many tests and appointments just to hear the answer that no one really wants to hear.

Then the treatment starts and stretches out ahead of you. You have to get used to all the medication and cope with the side effects and as you say real life is still there with all the usual day to day worries and concerns not at least the financial  impact!

I do wish you the best of luck with the treatment and finding your way through it all. Things do settle down eventually for most of us I think but it is a long haul for sure.

I'm eighteen months from diagnosis and my life is fairly normal  at the moment. It can be hard to believe in the early months but things do get better. It's just a very different way to live.

Best wishes to you and your family

Sue

Hi Darren, 

so sorry to hear about you M/M diagnosis. Just hang in there as it does get easier. The treatment and side effects are rubbish but there is light at the end. I am 3.5 years into it and it took at least a year before I could talk about it without getting upset. I was 65 and coming up for a happy retirement when the shit hit the fan. I am3 years from my 1st autologous transplant and about to have another one in the next few weeks. I got 18 months remission before relapsing and struggling to make the decision to go ahead with this one as it wasn’t the best 3 weeks of my life.

It is a tough road ahead for you but you will get there. Just put your faith and believe in your doctors and the treatment available. I still have down days but there are more good than bad. 

 Good luck and try to stay strong.  Robert