My name is Linda and I am 68 years old. I live in England in the county of Lincolnshire with my husband Jonathan. I have three grown-up children and six grandchildren. I had no idea I had myeloma. I did not feel ill. I thought I had pulled a muscle in my back after a long uncomfortable flight from Cuba in February 2014. I rested and took care moving around. It did not get any better. The pain changed places; sometimes on my right, other times on my left. When I moved in a certain way a sharp pain felt like a pulled muscle. I found I could not sleep on my side - too painful. In the mornings my shoulder blades felt as if somebody had trodden on them with hob-nailed boots. My chest was painful, yet things improved once I was up and about during the day. I did not go to the doctor, "What can they do for a back pain?" I thought. After 3 months of very gradual worsening I did go to see the doctor; but after various tests e.g. "Can you press down on my hands?" nothing produced the sharp pain I had been experiencing, and I felt a bit of a fraud. My doctor did take a blood test, as I had not had one for many years, and sent me off for an x-ray. I was told to take pain killers and come back in a week if nothing improved. I went to see a physiotherapist, but again after various tests no sharp pain occurred and I could complete all movements without discomfort, so I was pronounced "just a little stiff on one side" Ö.. I felt a fraud! After a week on painkillers and still feeling as if I had been run over by a bus I went back to my doctor. The x-ray showed normal wear and tear. The doctor took more blood tests. The following day driving along the motorway after a visit to watch my granddaughters in a school talent contest I had a phone call. It was the police, my doctor had been trying to get hold of me and would I go immediately to the emergency department of our hospital. My kidneys were close to failure. I spent a week in hospital, after which, luckily, my kidney function was well up. As we had already booked a weeks holiday in Portugal, due to fly out a few days after coming out of hospital, I was given the all clear to go. My older sister and her husband arrived the day before our flight, while my younger sister and her husband intended to meet us at the airport the following day. Late that afternoon I had a phone call from my doctor asking me to go and see him. A blood test result had come back showing I had myeloma. We went on holiday. It was not a good week, that first week in June 2014. As soon as I arrived back home from Portugal there was a letter waiting for me, I had an appointment at the hospital the following week. After extensive tests I joined the UK Myeloma XI clinical trials program, throughout which my care has been excellent. The first month on lenalidomide was pretty grim as I came out in an itchy rash, first on my neck and face which travelled down my arms, trunk and legs. My hands swelled up and also my feet. The dose was reduced and that sorted the problem out. I had my stem cell transplant in early December 2014 and was home for Christmas. Now 9 months later I feel almost back to normal. So my message is this Ö.. DO go and see your doctor if you are experiencing:
- Persistent back and chest pains which seem to fluctuate in intensity and change to different locations
- Yet no pain when poked or prodded
- The feeling of a "pulled muscle", which can't be repeated at will
So now it is time for me to support the Myeloma Crowd Research Initiative (MCRI) to make sure it can't happen again! Find my MCRI fundraising page here.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of HealthTree Foundation (formerly Myeloma Crowd).