Astrid’s Story

Ewing’s sarcoma at the distal femur
Age at Diagnosis: 44
Date of Diagnosis: 1989
Location: Norway
Hospital: Haukeland Sykehus

Diagnosis: I experienced pain in my femur while sitting on a sofa with my feet outstretched and my son on my lap, so I removed him and ran my hand over the place. I could feel a lump. When I bent my knee it was not so obvious. I had also had pain around my knee when lifting something heavy and walking downhill. So after a few days I saw a doctor and was sent for emergency x-ray on the 15th of September. I was very impressed how quickly it went. Unfortunately everything stopped up for some reason or misunderstanding which I don’t know, and I had to wait for many weeks before the next x-ray. I was a bit desperate and felt myself falling freely. (I am sorry, my English is not good enough). I kept calling the doctor because he thought I would be admitted within a couple of days. Nobody believed it could have been anything serious, but I knew because I had seen the pictures through a partly open door. Anyway I was admitted to the hospital 3rd of November for a lot of tests, and had to wait some weeks for the results. Eventually I started chemo in the middle of December.

Treatment: The hospital removed a piece of the femur and put a long piece of metal in from the hip to the knee and fastened it of course. They used a leg bone to connect the gap and blood vessels from my leg to recreate the bloodstreams.

I had chemo for 5 months before the operation and 6 or 7 months after. I am afraid I don’t remember which one now, but it was what they called a “protocol” – I understood it was a treatment used before.

I was very pleased with the doctors and the hospital. I had a telephone number to use with every minor thing (well I thought it was minor), but my immunity was so low because of the chemo I spent 7 weeks in isolation – a week at a time. 10 days after each chemo session I had blood tests every day until the values started to rise, usually for 10 days or so.

Recovery: I used crutches for about a year. My leg is a bit shorter so I have to build up my shoe. The only thing is I feel more tired. Otherwise I am well and have been working every day for 17 years.

Life now: I am pleased with my life, I have seen my children grow up, I felt it was hard for them, because twice I was told I had to amputate my foot all the way up to the hip, and they thought that was awful. But this doctor came from America and had learned something new and wanted to try it. I am so grateful. I can do anything except downhill skiing and snowboard (which I am a bit old for anyway). I plan to pension myself this year – a bit early perhaps, but it is a bit too much with work and a big house and garden. But I am well and, except for the tiredness, I am very healthy.

Thoughts and Hints for Patients: What shall I say? I was much older than most of you, I should think. I had children, and I did not want them to remember me sitting in a corner crying all the time (If I should die). I followed doctors orders not to mix with many people because of viruses and things. I made an appointment with the local doctor to see my children immediately if they were ill, and I did not have to worry about them, which I did of course. I know that there are new drugs for nausea because the last sessions of chemo one was given to me. It helped a lot. I think it was called zofran.

I am afraid I don’t have any inspirations except to show you can survive.

I was told to listen to music when I was given chemo, for me it did not help and the music I listened to is spoiled forever. But you get better in between the sessions and you have to remember that this is the chance you have. Try it!!