I was diagnosed with multiple myeloma on 11th May 2021 after a stay in hospital with kidney infection. The myeloma was picked up through blood tests during this stay. But I had been suffering with a very painful lower back for at least two years pre iously, slowing my walki ng and restricting activities. After my diagnosis I was called straight into the clinic for bone marrow biopsy and had full body mri. Confirmation and told six to 12 months to live. I have it affecting my spine with wedge shaped fractures throughout making me stoop, I have it in my hip, pelvis, shoulder ,neck and ribs. The pain is sometimes unbearable but I have morphine patches that pump me every hour, changeable every week, I have liquid morphine, and I also take paracetamol. I tried chemo during the Covid outbreak, but it made me feel like death warmed up, made me feel so poorly, eventually I opted for palliative care. I am 70 years old, and as there is no tumour to shrink or remove, its damaging me internally daily and nothing is going to stop it. Slow it down possibly but not stop it. So I have kept strong, try and do as much as I can, I live on my own, I walk regularly to keep myself as active as I can and mentally too. My annoyance is, apart from the consistent pain, the fact that I can't do all the things I used to do, and I am so, so worn out all the time. Everything is an effort these days but I persevere, it's not gonna take me yet. So my advice is keep positive, set goals, have things to look forward to, exercise as much as this horrible disease let's you and know your limits. Sorry if this is really long but I don't have much conversation on a daily basis as my social activities are somewhat depleted now. Hang on in there guys, be strong, it helps me for sure.
Hi Celery girl and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Blood Cancer groups. I don’t have Myeloma but I was diagnosed back in 1999 with a rare, incurable type of NHL Stage 4a so although my Blood Cancer ‘type’ is different I understand the challenges of this journey.
I am so sorry to hear about how your MM has progressed and your prognosis. This is such a hard time for you but it is often helpful to talk with others on the same pathway. I am not aware of anyone in this group in the same position so could I recommend that you join and copy and post the text from this post into our general Living with incurable cancer - incurable patients only group as this is a safe place to talk with others who are walking the same pathway.
The Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 or via Webchat and Email too. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear and our Cancer Nurse Team in our Ask an Expert section may be helpful but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and do run an online Hematology Support Groups.
Always around to chat.
