Sally has kindly shared her story to help raise life-saving awareness amongst medical professionals and the public.
My symptoms started with a red, hot swollen knee that became increasingly painful, until I was walking with a limp. I used to dance a lot and the GPs put it down to a dancing injury, but I didn’t remember twisting or hurting it. I was put on a course of Ibuprofen for the pain but that had no effect. I was then put on a course of diclofenac but that had no effect either.
I saw several GPs at the same practice for about 6 months before I was eventually diagnosed.
I felt that there was a perception that I was just a young woman with hypochondria and making a bit of a fuss about not very much, but I was in a lot of pain.
Eventually I was referred to a physiotherapist and after a couple of sessions, he told me that something wasn’t right and that I needed to go to Leeds General Infirmary.
As soon as they did the X-ray, they could see something wasn’t right. They called me into a side room and said it looks suspicious. They said they were really concerned and that they were referring me to the Royal Orthopaedic Hospital, Birmingham for a biopsy.
I’m sure if I had the X-ray earlier it would have been picked up sooner.
I went to the Royal Orthopaedic Hospital for a biopsy. They initially thought it was a Giant Cell Tumour of the Bone, which is a benign tumour, and I felt quite relieved. I had to wait three weeks for the results, and they said they would confirm it over the phone, but they called and asked me to go back. I just knew something wasn’t right.
I travelled back down to Birmingham with my husband Peter, who was my fiancé at the time, and my parents because at that point everyone was really worried. But I still wasn’t expecting to be told it was bone cancer.
At my appointment, I was told it was bone cancer, osteosarcoma. I felt very shocked, incredulous really. I went blank and felt faint.
During the journey back home, I was in a state of shock, I couldn’t speak. It was horrendous, you just don’t expect anything that major at 26 years of age. I was fit and healthy and sporty.
It was such a massive shock after being fobbed off for months, that’s what made it worse, when you’re not believed. You do start telling yourself you must be overreacting or exaggerating. You start to ask yourself am I really in that much pain? Or am I just focusing on it and therefore imagining it.
At the point of diagnosis, they said it was quite a large tumour and I was told I would need nine months of chemotherapy and limb saving surgery. I was given information about the endoprosthetic knee replacement that I would have. I thought I could deal with that even though it was still a big operation. An amputation at that stage was never talked about and something I hadn’t thought about.
I had awful side effects from the chemotherapy, projectile vomiting and low white blood cell levels so after every cycle I would end up back in hospital being treated for an infection with antibiotics. I would have chemotherapy as an inpatient for 5/6 days then I would go home then I would be back in hospital with an infection. I also had extreme tiredness, I couldn’t get upstairs, Peter would have to carry me upstairs.
I spent a year in bed either a hospital bed or my own, completely cut off from everyone and everything.
After the first three cycles of chemotherapy over three months, they did another scan and found that the tumour had actually grown. Because it had grown during chemotherapy, the limb saving surgery wasn’t possible anymore and an amputation was discussed.
It was horrendous, I thought I had come to the limit of what I could cope with. Thinking about the surgery I would have had and having more limited mobility with the internal prosthetic, to then have another life-changing decision foisted on me. It was just unbelievable and really awful. It was my decision, I had to make the decision to have the amputation and it was just horrific.
I was 26 and about to get married. We had our wedding booked for August 2005 in Italy and we had to cancel the wedding because I was having my treatment, which was a big trauma and not an easy time for me and Peter. I also loved dancing and back then I felt that all that was about to be taken away.
After my operation to have the amputation, I started back on the chemotherapy, which was another 6 cycles, which finished in December 2005. I had some physiotherapy following my operation. They did teach me how to walk again at the limb centre, but it was fairly basic. Once you’re up and going that’s it. I taught myself to walk again through practising.
From a young woman’s point of view, it wasn’t just about the mobility, even though that was the main thing, I really felt the loss of femininity as I perceived it. I felt my legs were my best feature, to then lose that, it was a loss I had to come to terms with.
It did make me feel really unattractive for quite a long time. I guess it sounds superficial but it’s such a massive part of how you feel about yourself, like the way you move. I used to feel confident because I was a dancer, I felt quite elegant when I walked. Afterwards, always having a limp and walking being an effort, I just didn’t feel like me and I lost my energy and vitality.
I had a lot of counselling, and I went to see a psychologist at the oncology department, which was very helpful, and I had support from family and friends. I started to learn how to walk again in January 2006 because I was too poorly whilst I was on chemotherapy.
Peter and I got married May 2006, I walked down the aisle with one stick and holding on to my dad.
Later that year, I had a scan of my ovaries, and I was told they were completely inactive, meaning I was infertile. I always wanted children and we had just got married and that was another grieving process. But then unexpectedly I fell pregnant the following year, a year after finishing treatment.
My daughter was born October 2007 and she was healthy, which was a concern because I didn’t know if my eggs were affected from the chemotherapy. I was over the moon to be pregnant, but I was also very anxious about something going wrong with the pregnancy. When you’ve had one health thing, you start to assume the worse for everything. The whole pregnancy I was in a high state of anxiety thinking something was going to go wrong and for the first few years of her life I was also very anxious.
Also, because it was only a year since losing my leg, I was still coming to terms with that as well. I was finding it very difficult to be the kind of mum I had imagined I would have been. In my head I was going to be the mum that was running around the park with my child, taking her swimming, climbing trees. The sort of things my mum had done with me, but I couldn’t do any of that. I would also find it very difficult to carry her especially as she got a bit bigger. I had to put her on reigns when we went out in case she ran off because I couldn’t run after her. I found that really difficult to come to terms with because I wasn’t being the mum I wanted to be, this was another impact of losing my leg.
In 2012, when I had my second child, I had totally come to terms with things so I was much happier in myself, doing what I could do rather than trying to chase something impossible. My focus during that period of my life was learning to walk, being a mum and returning to work.
A main turning point for me was sport.
I didn’t do any sport for 7 years and I just thought I can’t do sport any more, I didn’t think it was possible. That did mean I went through quite a long period of low-level depression because I was just sad for a long time.
I remember watching the 2012 London Paralympics and that inspired me to want to try sport again. I went to a disability sport exhibition and ended up talking to British Cycling and I was asked if I wanted to try out. At first, I was like ‘no’ but it planted a seed that I could do something for myself.
So, we got the old rusty bike out of the shed and Peter strapped my prosthetic leg to the pedal, and I rode around the block. I fell off loads of times, but gradually got better and stronger. I eventually got to the stage where I went for testing at the velodrome at Manchester and got on to the Paralympic development squad and spent the next three years on the Great Britain Team competing at world championships and world cups in South Africa and Italy.
It was a very exciting three years of my life, that I wouldn’t have had if I had not lost my leg.
Obviously, I would rather have not lost my leg, but it was something positive that came out of something really dark and an amazing opportunity I wouldn’t have had otherwise.
Travelling the world and meeting wonderful people was a turning point and has been ever since, even though I’m not competing anymore. I feel so much better about my body image and confidence because before I was cycling, I was trying to make my prosthetic limb look like a leg and blend in and try not to be noticed.
If someone asked me why I was limping I would get really upset because I thought people were looking at me. After cycling, I got so used to my limb functionality and that it’s sporty and cool, I now choose to wear a limb that looks prosthetic, and I like the way I look again and that’s all down to sport. I had come full circle to 100% acceptance of who I am and what I look like and what I can do.
I also made an incredible new friend, Liz Clarke-Saul, through cycling. She really helped me, having someone to talk to who really gets it, helped.
She was such a big part of my cycling experience; we were kindred spirits. We both had bone cancer, we both had amputations, she lost her left leg, I lost my right leg. We both had the same shoe size, so we use to say we’ll buy one pair of cycling shoes and share them. Sadly, Liz’s adamantinoma bone cancer returned, and she passed away in July 2020. I miss her every day.
My message to others would be to find that community that understands what you’ve been through, and you can be yourself and not have to put on a pretence.
How you feel at the time at diagnosis isn’t how you’re going to feel in the future. It is devastating to be told you have cancer, that you’re going to lose a leg, or your mobility or you’re going to have to go through chemotherapy. It is just terrible and dreadful, but you will get through it.
How you feel now isn’t going to last forever – you will live again and have a full life. You’ve got to hold onto that hope.
Give yourself time to grieve and feel the loss, it is ok to feel really bad about it because it is really bad. You don’t have to be positive 100% of the time, allow yourself to grieve. That’s what I put off for a long time. I just suppressed those feelings and carried on and kept going, which is good partly, but you also need to process it. You will rebuild and have a full life.
I felt for a long time I had to put on a smile when really, I was feeling absolutely devastated. That delayed my recovery.
Awareness is so important because I still hear about people going to their GP for months on end before getting a diagnosis. That really pains me that we’ve not moved on since I was diagnosed 16 years ago. I want GPs to be aware that if someone does come in, even if it’s once in their career, I want them to be listened to and get that diagnosis quickly. I want things to change. Educating GPs and medical students like the Bone Cancer Research Trust is doing now, is part of that.
In 2017, Sally received more devastating news, she was diagnosed with breast cancer. Sally underwent even more chemotherapy and ultimately had a double mastectomy. A true hero of the bone cancer and breast cancer communities, we are incredible grateful to Sally for helping us raise life-saving awareness and we are delighted that today she, and all her family, are doing well.