I was sent for an MRI in June 2010 with the follow-up appointment arranged for the August; this follow-up appointment showed another growth on my knee requiring a biopsy. I was very upset as I'd assumed if another lump had been found I'd have been called earlier, I also had a horrible memory of the previous biopsy, which was painful to say the least, and got a bit tearful thinking I'd have to go through it all again. The doctor, although sympathetic, told me that he sometimes has to tell people they have cancer. I asked for a biopsy under general anaesthetic and handed in the necessary form.
I didn't hear anything for a while and I was controlling the pain with anti-inflammatory drugs. I thought it couldn't be urgent so, therefore, didn't initially chase up the biopsy. I made several phone calls and was told that someone would get back to me. I was starting to feel that something was wrong as the knee was beginning to swell and the painkillers weren't controlling the pain. Luckily, I had private insurance cover and phoned the hospital to arrange a biopsy which was carried out in in September 2009
...returning to the 11 October 2010, after eventually arriving at Stanmore my diagnosis was a left distal femur high grade undifferentiated pleomorphic sarcoma of bone. I also had two indeterminate lung nodules plus a small cyst on my left hip which needed investigating. I was alone and in a state of shock. I joked "well at least I won't lose my leg", they just looked at me in a way which I knew meant that I might!
The end of October found me having a PICC line inserted and starting my first cycle of chemotherapy at University College Hospital, London. The drugs used were doxorubicin and cisplatin requiring me to remain in hospital for four days. I coped with the chemo as well as I could and managed to keep healthy through the winter; helped by marvellous staff at the hospital and district nurses who visited me at home and took bloods. I also tried to do Pilates when I felt able to, asking the instructor to come to the house; after all I was receiving sick pay from work and wasn't spending my money on anything else. I felt in a state of limbo during this time, as if I was in some kind of time warp! The whole experience of chemotherapy and the associated side effects were very traumatic but I thought "I either deal with it or don't, there is no in-between, just get on with it." By Christmas I'd completed three cycles plus two blood transfusions and was ready for my operation.
The operation, carried out on 29 December 2010 at Stanmore Orthopaedic Hospital, was a distal femur replacement. Weirdly, I found the prospect of having an epidural nearly as frightening as the operation itself - something about needles in backs - never had one before! I came round from the operation and immediately reached down to see if my leg was still there and was immensely relieved to feel that it was. I was in a lot of pain and justified in dreading the epidural as it hadn't worked properly and had numbed the wrong leg! I had to have morphine but was back on the ward relatively quickly.
I've always been a very active and sporty person and was determined to exercise to reach my full potential post replacement. My physio started the next day and I was able to walk around immediately although achieving the required bend in the knee to be discharged from hospital was another matter. The exercises were extremely painful, but I needed to obtain a 90 degree bend before I was allowed home. I had a machine on my bed which I rested my leg on and it pushed the leg backwards and forwards and I had two sessions of physio each day. I was beginning to become obsessed with the number of degrees I could bend my knee to every day and I was questioning the amount each time it was measured. I was finally allowed home after ten days just short of the 90 degrees required, but with the threat that if I didn't achieve it I would have to have it forced.
My chemo restarted about six weeks after the operation - three more sessions with the cisplatin replaced with carboplatin as my kidney function was low. There was a physio working on the cancer ward so I saw her every day and I hired an exercise bike to use at home. Initially, I couldn't even turn the pedals a complete rotation but after a while I managed this. I was recommended an excellent physiotherapist, a young triathlete, who could empathise as well as treat me.
I was in tears after some of the physio sessions and had to check with my consultant that I wasn't doing any harm to the prosthesis by working so hard. With encouragement, I got a personal trainer at the gym for a few months to help me get my fitness back. It took over a year to achieve a 136 degree bend in the knee and more than a year to have the confidence to stop going to the physio as I had come to rely on her. My two daughters were wonderful during this time, wanting to put their studies on hold for a year but I would not hear of it.
I went back to work in the May, I work with a lovely girl who is brain damaged with left sided hemiplegia she's a joy to work with and if I ever start feeling sorry for myself, I take inspiration from her. I'm having three-monthly check-ups and X-rays on my leg and lungs. I have peripheral neuropathy in my feet which won't get better and one leg slightly shorter than the other, but I think I escaped lightly. I'm not allowed to run anymore and don't want to return to badminton as I can't play like I used to and find it depressing. I now cycle regularly at the gym as this maintains the bend in the knee and I've even played a bit of squash. I feel that Pilates is a really important exercise and at least now I don't have to pay for the instructor to come to the house!