After a bad fall, while ice-skating, I had my knee X-rayed as it was quite sore and bruised. My GP was simply ruling out any major damage. Luck would have it that, my X-rays were used as part of a teaching module and someone picked up on the shadow further up on the X-ray on the femur.
I got called back for another X-ray on the grounds that the first one did not develop properly. Unknown to me, they were taking pictures of the femur and not the knee. My GP then broke the news to me. I had no idea what he was trying to tell me. My mother was equally confused. It made no sense to anyone. Apparently, I was really ill but felt very healthy and fit! I had no symptoms other than, alleged, growing pains.
My treatment was less than traditional. I am Portuguese and was living in Portugal at the time, so my treatment started there. My treatment was a ‘simple’ surgery to remove the tumour but unfortunately, I had a series of mishaps, after an operation on the wrong side of the leg and after recurrence within 6 months of the operation my mum decided that enough was enough. She travelled with me from North to South of Portugal looking for an expert. Osteosarcoma was not really understood in Portugal at the time, they kept telling us it was unusual to survive it because for most people when they had symptoms it was too late. We were confident on the histological analysis so we 'just' needed to find someone who could treat me. Time was against us.
Somehow my mum managed to secure an appointment with Mr Steven Cannon (now retired, Professor S Cannon MBE) in London. We met him privately in Harley St. I will never forget how he spoke to me for the whole appointment. He was talking about treatment, operations etc while looking at me. I was no longer sent out of the room while people talked to my mum. He was talking to me! He acknowledged my feelings, my frustrations and agreed that this was a bad blow. He then suggested that we replace the femur at the Royal National Orthopaedic Hospital at Stanmore.
A whole world of prosthetics opened up in front of me and I experienced the best care - excellent medicine underpinned by great compassion. I had my first femoral and knee joint replacement in 1991. I had a series of recurrences every 3 years but again they were dealt with more excisions of the tumour. I guess because my osteosarcoma was caught so early on, it did not have the chance to spread. I never did chemotherapy or radiotherapy.
All in all, I think it was worth enduring the extra operations to save me from chemotherapy and radiotherapy. My head was not in a great place for a long time, so it was great to have the operations and then move on into a recovery period without having to deal with other treatments in other hospitals.
As an osteosarcoma survivor once you get over the hurdle of cancer you are then busy dealing with the mechanics of it all. Prosthesis that loosen up, rebushing, infections, etc. Having to go for check-ups regularly is almost like been given a free pass to enjoy life for a defined period of time. It is great when you have it to start with, then as the expiry date looms you become aware of how fragile everything is again. Especially when you get to the point where you have yearly check-ups. It is enough time to forget about it all only to have it all suddenly grind to a halt. From nowhere you are back in that waiting room bargaining for good news. I was finally 'promoted' to the much wanted "managed discharge" status in 2014. 25 years of being part of a cancer clinic was enough. I was so happy, I practically skipped out of hospital.
My biggest challenge to date has been the acceptance that an artificial joint is the present that keeps on giving. I was the healthiest and fittest I have been for a long time and since 2017 my shin bone has decided to complain. I'm due another operation to replace the shin and knee component of the joint due to loosening of the bottom part of the joint probably caused by the mechanical stress of the joint on the shin (a relatively soft bone). This artificial joint has been in place since 2001 so it is not surprising that it needs further surgery; most artificial joints last between 15-20 years. So, I have been back to my old hunting ground, the Royal National Orthopaedic Hospital for follow up appointments and soon for surgery and intense physiotherapy.
My darkest moments are connected with accepting that having had osteosarcoma has shaped me somehow. Only since my managed discharge I have been able to truly put many of my experiences to bed. Two years ago, I decided to seek counselling support. It was helpful to talk about how being in and out of hospital has shaped me as a person. I am finally at one with my body, I'm no longer ignoring its limitations.
I have discovered open water swimming. I feel truly able in the water. There are no scars, no visible muscle wastage, no limps to be seen, no special adaptations. It has given me the freedom to be me, just a 'normal' person, swimming at one with the universe. Swimming has been key to a strong body and a healthy mind.
For a long time, I refused to alter my life, I was in denial about having a condition. I was too proud to do so. About two years ago, however, I got an adapted swing crank for my bike. It allowed me to rediscover the joy of riding a bike. No more dangerously high saddles to compensate for little bend.
In 1997, I graduated from the University of Glasgow with a BSc Hons in Microbiology and then in 2001 with a PhD in Molecular Pathology and Cancer Studies at Glasgow University. I'm happily married and have 2 wonderful boys. I have a very close relationship with my Mum - more than anyone, she has lived my very positive and less positive moments. Always cheering and clapping in the front row. My zest for life comes from her. She rolls with the punches and comes out laughing. As a Mother, I also have responsibilities towards my kids. I want to be here for them, my husband and I want to enjoy life to the full and look forward to growing old together. He is my rock. He keeps me grounded!
The way I see it is like this: I enjoy live, I love my family and friends. I want to be around, I want to be fit and healthy to go places, travel, have a drink and a laugh. I am only here because I had the operations and was disciplined in regard to physiotherapy exercises.
I have met many bone cancer patients. Everyone is different, I would encourage everyone affected to make this their own journey. If you live in the UK, you can get some of the best clinical care in the world, but I worry that mental health is overlooked. When your body is misbehaving you need your mind to pull you through, make sure you look after it. Don't be afraid to ask questions, the more you understand about your condition the more you buy-into the treatment and recovery. Be kind to yourself! Trust your spirit, your body will follow.