Hi newbie here reaching out to say hi. I was diagnosed with MM in Aug 2019 after needing emergency cord compression surgery on my spine. Drs had been telling me for weeks the intense pain I was experiencing was just sciatica but if I ever experienced incontinence to go straight to A&E and thats exactly what happened. After the surgery I was to learn that the pressure on my spine was caused by tumors and that I had in fact an incurable but treatable cancer. It's a day I'll never forget, coping with that and how to tell my children and family. I'm 4yrs in now having had an auto SCT in 2020 and 2 relapses. The reality of this is and it's prognosis is hitting me hard atm with only 1 line left before trials. How to cope with not knowing how long you have left is something I'm really struggling with. I'm trying to live in the moment but at 53 and with 2 young adult children it's really hard time stay optimistic and hopeful with also being realistic. Any suggestions or guidance on coping day to day would be good to hear x
Hi Bernie101 and a warm welcome to this corner of the Community although I am sorry to see you joining us and hear about your ongoing journey.
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 living with an incurable blood cancer.
I have relapsed multiply times over my years, had an Allo (donor) SCT back in June 2014, this fails by Christmas 2015 so my final role of the dice was a second Allo SCT in Oct 2015 and so far I remain in remission.
There are a few active group members at the moment so let’s look for them to pick up on your post. Why not click on the main ‘Myeloma Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00where 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
How to cope….. at my hardest point it was all about living from day to day looking for that next treatment to do it’s job. It’s coming up to 8 years since my last role of the dice but during these past 8 years a few new treatments have come on line that may help me if I relapse so in my mind there is always hope until hope runs out.
Always around to help more or just to chat.
