Over the last thirteen years, Isabel “Issy” Kingdon’s life continued to change. “My recovery is long. There is a lot to it”, she explains. Sport has helped through everything in her recovery and getting to the mental place she is now.
In her mid to late thirties, Issy worked in special needs and was doing her PGCE course. Fit and active, Isabel was crazy about the outdoors and would cycle, swim and surf. She would do and try anything. Issy soon started running but noticed a pain in her leg. A sharp pain that she thought was a shin splint. However, the pain did not diminish, and her knee swelled up. She went to the hospital, and they said to let her knee settle. However, they said she had a massive tumour in her leg, and it was probably nothing to do with her knee injury. It was an incidental finding.
Nevertheless, as she finished her course, her pain got progressively worse. She saw a visible lump on her shin bone as her muscles began to waste. Issy took herself to the Bone Tumour Service. Upon biopsy results, was told she had a cancerous tumour in her tibia from her ankle to her knee. It had to come out.
“Am I going to lose my leg?” was the first thing Issy said. In hindsight, she finds her initial reaction ridiculous. Why? She finds her initial reaction ironic now as at the time the idea of losing her leg filled her with dread. Three years later she opted for an elective amputation.
She did not lose her leg originally. They removed the bone and salvaged the limb. Her entire tibia came out, and her knee joint. Issy had endoprosthesis, whereby her limb still looked like a leg, but there was a metal bone and hinge joint instead. Unfortunately, it failed. Issy was lugging herself around on crutches or a wheelchair. “I did not know which way to go. I was in so much pain. I was housebound with no quality of life,” explains Issy.
Amputation. It was hard to hear. But Issy thought, why bother to keep a leg she found useless. After a few months of toying with the idea, she had an elective amputation. It looked like a leg but did not have any function. The amputation was above the knee, and it felt like a great sense of relief. However, after a year of things going in the right direction, it started to go wrong again. “What is going on? I do not get it. No one could give me answers, and I was back in a wheelchair,” describes Issy. She went to see multiple surgeons, and she had her amputated limb revised three times. However, nothing was ever getting resolved.
“Sport has helped through everything.” Issy Kingdon
Issy went to a conference put on by The Limb Centre. It was about a new surgery for amputees called an osseointegrated prosthesis, whereby the bone is, anchored with a prosthesis rather than a conventional cap moulded. A hole gets drilled into the bone, and a permanent pin is, implanted. The prosthesis is, clicked on with an Allen key. At the time, this was not available in the UK. Thus, Issy flew to Australia. She was the perfect candidate. She had spent the last four years attempting to walk, so this was another chance.
By the end of 2016, Issy had the surgery and, after two weeks, was up walking. “It feels completely different, the start of me again. Yes, I do not have my leg back, but this is as near as it will get, and it is pretty amazing”, explains Issy. However, after a few months, there was pain again. After a very long time to diagnose, she found out she had a stress fracture in the bone. She was sent in for an emergency operation as it was dangerous. They had not seen anyone with this before.
The pain never went after surgery. She could not nip over to Australia to see her surgeon. After months of waiting, she discovered her hip had deteriorated. Issy needed a hip replacement. “I laugh now. But at the time, I was in shock. I had to go back to Australia for this operation as no one with osseointegrated prosthesis has had a hip replacement”, explains Issy.
The surgery was traumatic for Issy. They had not performed it before. Therefore, it was experimental, which she accepted. She was that far down the line there were no alternatives. “Go with the surgeon that knows your body, put your neck on the line and trust them”, Issy states. However, they could not finish the surgery in one go, and she had to go back to the theatre a few days after the first. The entire experience was traumatic. After another surgery a year later, Issy now has chronic neuropathic pain. It feels like it is never over for her. It has been tough psychologically.
“This has got to be it for me, the best I will be. I want to be better, but it comes to a point where I have to accept this. The pain will never really end.” Issy Kingdon
“The perception of people that see me is that I am just like everyone else. It is weird to know how to take”, says Issy. On the one hand, it is all she wants. But then it is hard when she feels as though people are looking at her as though she does not look the same as everyone else. Everyone wants to ask her questions. But then, it is hard to also deal with people expecting her to be able to do the same as everyone else. “Where do I want to be with that? I want to be perfectly normal. Am I disabled or not disabled?” questions Issy.
Issy has come to a point where she feels she has accepted this is as good as it gets for her. However, if someone says she can try something else to alleviate the pain, she will.
Nevertheless, one thing Isabel missed during everything was sport and the outdoors. She loves the outdoors and the beach. The beach has always been her place.
Being in a wheelchair, she struggled to get on the beach, let alone in the sea. However, she then discovered The Wave Project, a surf therapy charity. They give disabled people the opportunity to surf, which would likely be impossible without their support. Issy feels like everyone else when she is surfing with the team. The water is massively freeing. It makes her feel on more of a level playing field with others.
“The weightlessness of being in the ocean. It makes everything feel fine again. The emotions and feelings of being in the sea is a wonderfully freeing experience” Issy Kingdon
Issy has always kept up swimming, even after the amputation. However, being on a surfboard again, being in the ocean and picking up the speed, feeling the thrill of it is what makes her happy. She always feels amazing when she is in the sea. She always feels amazing once she comes out. The Wave Project enabled Isabel to get to the beach, walk on the soft sand and get into the water, all with their support. “Since I lost my leg, it has given me great insight and awareness of what people have to deal with every day. It has changed me” states Issy.
Taking up a new hobby is scary. Wanting to exercise but not feeling like you can. These barriers to being active are real. They are physical barriers, such as Issy not knowing how she can get down to the sea in her wheelchair and walk along the beach. There are also psychological barriers. Issy used to feel she would make a great fuss when going to the beach in her wheelchair. Feelings like this are why organisations like The Wave Project have helped reduce these barriers for Issy by providing her with specialised equipment and expertise. They have allowed her to get back into the ocean and do something she has always loved, surfing. It was a life-changer for her.
Issy struggled with her mental health. Early on, her goal was to walk. However, once she hit her target she imagined it would be without pain. When it was painful, and she realised she might never walk pain-free, she crashed mentally. Due to the number of surgeries and trauma she suffered, she began experiencing anxiety around anything medical. She suffered from panic attacks and anxiety attacks, and when she went to Australia for her hip replacement, she told people it was a holiday. She could not even face telling people it was for surgery or reading emails about it. Mentally she could not handle it.
Issy’s mental health has also benefited greatly from The Wave Project. She explains, “the surfing has had an overwhelmingly positive effect on my mental health, but so has being involved more with the charity”. She now also assists with the volunteer training and educating people about disability, making them aware of the barriers. This is empowering for her.
“When suddenly the thing you love to do most goes, and you lose it, it is hard” Issy Kingdon
Being driven and active, motivated by exercise and adrenaline, is a huge coping mechanism, and discovering the mentality and buzz to push yourself. Having that drive, Issy found this helped in her rehab, the want to get back into the swimming pool, and it stopped her from going down many slippery slopes to depression. “It is worth having a sport, even if you are not an active person. It makes things easier,” explains Issy. That is where adaptive sports, para-sports and organisations like The Wave Project come in.
In the last couple of years, Issy has had a lot of anger. She questioned why things kept going wrong every time. She has a pretty positive outlook on life, but she harboured anger. “Maybe it was the physical frustration of not getting where I want to be. The exhaustion, the surgeries, the rehab, the appointments and all the unknowns” describes Issy. She felt like an emotional wreck, and with that saw a therapist. Therapy enabled her to come to terms with accepting herself and being happy with where she has got, not constantly trying to push herself. “I cannot keep pushing for something that is not achievable, such as my leg growing back” explains Issy.
Losing a limb can affect your self-image. How you see yourself is one of the hardest things to accept. Issy struggled with this. You can feel negative about your body. However, she finds value in speaking to others who can see it from her perspective. Her best support has been with other amputees. It has been a massively positive impact on her mental health, and she encourages any new amputees to do the same. Advice from Isabel is to find groups on social media and find people who relate. To find that support is encouraging. Issy is happy to be contacted to share her experience and help anyone shed some light on what they are going through.