Super anxious

Hi

Try  not to worry it may be ok

even if it is myeloma it is treatable and their are many people on this forum who will help you with your journey 

Thank you . I'm just so worried. Dr Google has put the fear of God in me ... saying it's an incurable terminal condition. 

Hi LFT and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about the journey your diagnosis.

I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed way back in 1999 with a very rare (also incurable) but treatable type of Non Hodgkin’s Lymphoma (Stage 4 in late 2013) so although my Blood Cancer ‘type’ is rather different I do appreciate the challenges of this journey well.

You can Google this and get a 1000 answers but actually only a few are correct and up to date. There was no Dr Google when I was first diagnosed and I know that people who randomly looking at my condition would find some very confusing and inaccurate information and yes my cancer is incurable but  24 years later I am still here living a great life.

Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00, email or live webchat where you will find one of team there to help you out. We also have our Ask an Expert section but do allow a few working days for a reply.

For good information do check out Myeloma UK who produce very good information and run various support platforms including their Buddy Scheme, they also have a Support Line on 0800 980 3332

You may also want to check to see if you have a Maggie's Centre in your area as these folks are amazing and most centres do run monthly Heamatology Support Groups and the one I attend does have a few folks with Myeloma in it so worth checking.

Always around to help more or just to chat.

Hi LFT,

I really feel for you as I know the anxiety just the thought of what the doctor is searching for makes you feel. My husband has multiple myeloma, he was diagnosed in November 2020 with the disease very advanced. It was an incredibly scary time, in particular when you read what’s on the internet. A specialist nurse gave me some advice and said to just stick to the MacMillan and Myeloma websites, I listened and took the advice. All I could think about at the time was Myeloma and the implications of what it all meant. My husband was given 2-3 months without treatment, with treatment he is still with us two and a half years later. He went from being in excruciating pain and barely able to walk to regularly walking 4-5 miles. There are many many people who have had treatment that has enabled them to live a virtually normal life for years and the treatments have expanded and improved even over the two and a half years that Myeloma entered into our lives. I do hope the results come back as negative but hopefully hearing the responses you’ll receive will give you encouragement that all is not lost. Big hugs to you, Marion xx