In 1987, at just 17 years old and with his whole life ahead of him, Phil was diagnosed with osteosarcoma. 30 years since his diagnosis, Phil shares with us his incredibly emotional journey from his decision to have an amputation, to qualifying as a doctor and why it’s taken a quarter of a century to realise that he’s never fully come to terms with the events of ‘that year’.
I decided at a young age that I wanted to be a doctor and after leaving school I went on to study at Sixth Form College. Sport was also my life, participating in whatever sporting activity I could. My main passion was cricket and my long-awaited invitation to attend trials for the County cricket team came knocking, but sadly this was also around the time that my symptoms began to manifest.
I began to develop a vague gnawing discomfort in my left knee. Nothing more than an annoying distraction at first but the pain progressed to a level that began to affect my performance on the cricket pitch. I visited my doctor, who said I was probably suffering from growing pains, so I tried to continue as normal.
However, over the coming weeks the pain slowly magnified, never allowing me any peace and draining me of any sense of cheer and optimism. The nights became long and lonely, a time I began to dread. I would lie awake for hours upon hours, the pain gnawing away at me knee. I returned to see my GP and his response was very different this time. I knew now that something sinister was wrong and I was urgently referred to an orthopaedic surgeon. By this point the pain was becoming unbearable, having amplified exponentially. It bore the characteristics of an agonising searing-like sensation, akin to a hot skewer being driven through my knee. Each wave took away my breath, leaving me feeling nauseated and drenched in sweat.
My parents rushed me to A+E at Leicester Royal Infirmary. An X-ray was taken, and I was admitted onto the ward for the night. I was then transferred to Glenfield Hospital for a bone biopsy and the results were catastrophic. "I’m afraid you have a malignant neoplasm...unfortunately its bone cancer” were the doctors words, as he informed me and my parents of the diagnosis.
I heard nothing more than those few words, frozen in time, with my senses utterly paralysed. I was 17, it was so much to take in.
I didn't even know you could get cancer of the bone.
Thereafter, I was asked to attend the Oncology ward at Leicester Royal Infirmary for a discussion with the orthopaedic professor and consultant oncologist. We sat together on the bed, with the thin curtains drawn around the bay, as though it were a private, soundproofed consultation room. I was told I would require some sort of operation. The options were either the excision of the tumour and the diseased bone being replaced with a prosthetic knee joint, or a mid-thigh amputation.
At that time a bone bank had been recently established in Leicester and there was the potential option of a bone allograft (transplant). However, it wasn’t a particularly tried and tested technique, so the prospect of ground breaking surgery was doubtful.
The decision about the type of surgery I was going to have was to be based upon the success of pre-operative chemotherapy. The oncologist explained about the chemo regime and suggested that there were two clinical trials running and that I would be randomly selected to one of them. The regime would be either a 40-week trial of chemotherapy or a 20-week programme. Both were heavily methotrexate-based but the longer regime included Cisplatin as the other main drug. The allocation of my option was chosen with the flip of a coin and I drew the 40-week regime. My heart sank! I was asked if I had any questions, but none came to me as I was so shell shocked at the prospect of such a gruelling treatment regime.
The following Monday my first chemotherapy treatment began. I was given folic acid as a rescue therapy and massive amount of intravenous rehydration to flush it all through my kidneys. I had to drink 8 large glasses of water before I could be discharged and was instructed to take large sodium bicarbonate tablets before my next admission, to neutralise the damaging effects of the methotrexate. I lost my hair, which made me immensely self-conscious and I wore a cap all the time apart from when I was in bed or having my chemo. I had awful nausea, persistent vomiting and painful mouth ulcers. Pre-operatively, there were 4 sessions of methotrexate, followed by a 3-drug cocktail and after a couple of weeks off, another 3 back to back weeks of methotrexate. This took me to the point of the next CT scan which was to inform the decision for type of surgery I was to have.
I had a chart at home to tick off each week of chemo. Every time I went to the ward I would ask the nurses if they would measure my leg and check the circumference to see if it had reduced.
The aim for me was to have limb salvaging surgery, my heart being set on a bone allograft from the new bone bank.
The CT scan showed no significant response to chemo. The tumour had only slightly reduced in size and was very close to the skin surface. The treatment hadn’t done enough to save my leg. All surgical options were still theoretically available to me, but I was told that the bone allograft probably wouldn’t work because they would have to take so much bone away, there wouldn’t be enough tissue left to attach it to. The possibility of cancer recurrence was also likely to be quite high with any sort of limb salvaging surgery.
I pretty much decided on a mid-thigh amputation there and then. After having so much pre-operative chemo I was adamant that I wanted to minimalize any risk of recurrence. It had to be an amputation. There was no other option as far I was concerned.
It was the easiest decision I’ve ever made because it was so clearly the route that would give me the best chance of survival. I wanted to get rid of the cancer and I was willing to do whatever it would take to achieve that. The amputation gave me the opportunity of complete knowledge that there was total eradication of the cancer. I couldn’t contemplate the possibility of metastases at that time.
I saw surgery as the next hurdle, but I couldn’t really contemplate how life would be beyond that. More chemotherapy would be necessary, but my mindset was solely focused of getting through the operation. The need to have life was the absolute priority, even if it meant living without my leg.
The prospect of surgery offered me a strange sense of relief because I always saw the cancer as something of an alien. It felt as though it had a life of its own; a parasite that didn’t belong in me and which I was desperately keen to be rid of.
I had 2 weeks before my surgery to consider my options, but my choice didn’t waiver. I was grateful for having time away from chemo, feeling relieved and uplifted because it was the first time I had felt well in 3 months. I made the most of my time by trying to lengthen each day. I’d get up early and have productive plans for my time. When everyone went to bed, I would spend time alone watching music videos until I couldn’t stay awake any longer and then I’d get up again at 6am to enjoy the next day. Those days were precious and gave me a degree of normality. However, the red mark on the calendar signalling the day of the operation, rapidly approached. A controlled mutilation that would change me forever and beyond that lay a future I couldn’t predict.
The day before surgery my friends did their best to try to take my mind off the prospect of the operation. They were such kind people, we were all so young and the way they coped with a situation which they had no power to positively influence, was remarkable. Along with my family, they were the people that kept me going and I know I wouldn’t have made it through without them.
Monday February 15th, 1988, the day after Valentine’s Day, was D-Day. My mum and dad took me to the hospital, and my dad was asked to sign the consent form. He found it incredibly difficult and later told me....
he felt like he had signed my leg away.
My dad had tears in his eyes after signing the forms and we cried together. It was the first time we’d shed a tear that year, despite everything that had passed beforehand. The release of emotion was hugely cathartic and at that point, I knew with certainty, that I could live into a future with one leg.
After the surgery I woke up and asked the nurse if they’d actually carried out the operation because I could still feel my leg. They told me my leg was gone and that I was experiencing phantom limb pains. To reassure me, they showed me my bandaged stump. That was it, the cancer was gone!
I was so full of endorphins and adrenaline that week, that I didn’t feel any real pain. I also experienced an overwhelming sense of relief because the surgery was done, and the cancer was gone. I could think now of moving on and it was from that point that life restarted.
I was out of bed the day after surgery to start physiotherapy and they discharged me on the Thursday, just 3 days after the amputation.
The enormity of what I’d been through that week, really hit home during the homeward journey. I watched the world go by from the car window and realised that I had to live my life amongst all that busyness, with only one leg. The sense of vulnerability was immense and for the second time that year, I struggled to control my emotions.
The week following surgery, my physiotherapist encouraged me to walk using a ‘pylon’ and 6 weeks thereafter, I was fitted with a basic prosthesis. I was desperate to challenge myself and return to sport, so I asked my physiotherapist if I could have a try at the golf range. She laid down the gauntlet, suggesting that she was doubtful that I’d manage without falling over. Having set the challenge, I was determined to prove her wrong and we made a five pound bet that the following weekend I’d hit a golf ball 150 metres. So that’s what I did; I took out the driver from my golf bag and had a go. It felt amazing!
It made me realise that I could return to sport. I’d loved cricket and started playing again with my brother. Later that summer I started playing with my team again in competitive matches.
I continued with more chemotherapy after surgery, but the toxicity of the drugs began to take their toll. My white blood count dropped to almost nothing, so my chemotherapy dose had to be reduced and admissions were deferred a number of times. I became frustrated because I wanted to get it all over with. There was also, a fear factor associated with having breaks between admissions because I saw the chemo as a safety net that mopped up any cancer cells that may have been left behind. The fear of it returning, was significant and I worried a great deal when treatments had to be deferred.
After so much treatment, I eventually hit a wall and during one admission, shortly after a nasty episode of sepsis, I knew that I couldn’t go through any more chemo at that time. The paradox however, was devastating. I was in bits, thinking that I'd failed, and that the cancer had started to expose my psychological vulnerability. I’d never turned down the chemo before and it felt as though I’d failed all those around me who had worked so hard to give me my life back.
Following a short break, I returned to chemo, recommencing my 40-week regime. Around that time, I returned to my studies at 6th form college. I would do my homework on the ward with a vomit bowl by my side trying not to be sick on my completed pieces.
My 18th birthday approached, and a party was planned to invite and thank all those that had helped me through my journey. On the day of the party, I was told that I needed a bone marrow biopsy because my blood counts were so low. They took a sample of marrow from my pelvic bone with a wide-bore needle that sucked out a core of tissue. A couple of stitches were inserted into the wound and off I went to the party. We had a fantastic evening and somewhat against medical advice, I had a couple of beers.
My anaemia and low blood counts continued and in addition to needing a number of blood transfusions, my chemo dose was reduced again. I’d started to vomit even before the chemotherapy was started, having developed a phobia of drip stands; just seeing one would trigger the nausea. With each admission, I felt increasingly ill and the recovery time took longer and longer. By November, it was clear that my body couldn’t take any more, but I knew I could never make the decision to stop chemo before the end of the 40-week regime. My fear of failure was too great, and I knew I’d forever regret it, if the cancer were to return. However, my Oncologist took the decision out of my hands. He knew how much I was struggling both psychologically and physically, so he made the decision to stop the chemo two rounds short of the 40-week regime.
I walked out of the hospital that day and felt an overwhelming sense of relief. The weight of responsibility to complete the chemotherapy had gone and it was time for life to start again.
On reflection, I had mixed emotions about being free from the chemo, realising that my safety net had well and truly gone. However, I knew I had to get on with life, but having been almost institutionalised for a year, I was unsure how and where to start.
Life did re-start! I qualified as a doctor...
I have travelled the world and have worked as a flying doctor in Australia. I continued to play most of the sports that I loved before my illness but also discovered new sports. I was fortunate enough to have had the opportunity to scuba dive on the Great Barrier Reef and I was even asked to join the Paralympic Volleyball Team.
In 1998, I had my 10 year follow up appointment with the Oncologist. I was told that it would be my last appointment and that I was finally cured. 1998 was also the year I started my GP training and in which my wife gave birth to our first daughter. Having been told that the chemotherapy would probably make me infertile, my daughters arrival into the world was nothing short of a miracle to us. Since then we’ve had a second daughter, another miracle that I never expected and for which, I feel so incredibly blessed.
It was only a couple of years ago that I realised I’d never really come to terms with the events of ‘that year’. I think I’d been in denial for many years and I’d approached the cancer, like I would approach sport. Winning was everything, the cancer was an opposition that I couldn’t afford to lose to. As useful a technique as it was at the time, I realised that I had largely ignored the emotional fallout of the events of that year.
All my friends and family were on the same journey as me, but they took a parallel path that ran either side of my own. They carried me when times were hard, but their suffering was no less than mine. I recognise now that our paths failed to cross enough, and I didn’t recognise the extent of their pain. Talking is so important and as I found just before my surgery, the collective expression of emotion, is an incredibly powerful and cathartic experience.
The support of my family and their ability to continue to establish normality in the home environment was one of the most essential contributions they could have made to my recovery. They never realised how much they’d helped me because I just didn’t tell them often enough.
People suffer in different ways. My suffering at the time was more physical than mental. However, I still can’t go to public swimming pools, I’ve never taken my children swimming and I have huge regrets about that as a father. I used to be reticent to go out in public in a pair of shorts, but the world has changed enormously since 2012 Paralympics and it’s now less strange to see people with prosthetics on the streets and competing in sports.
After everything I’ve been through, 30 years on, I still have many things left over from that year that I have to conquer.
My work as a doctor over the last 20 years, has allowed me to see cancer from an entirely different perspective. It is a huge privilege to help cancer patients through their own journeys and to witness the bravery and almost super-human resilience that people exhibit at times of great adversity.