Treatment and Road to Recovery
Tuesday, 13 August 2019
Simon describes his diagnosis and treatment
It’s September 2011.
I collapse at home in my living room. I regain consciousness but I’m immediately confused and irrational. On the floor I’ll become aware that I’m unable to move my legs and have no strength or no way of getting up.
Until this day I still find it quite difficult to piece together everything that followed from this moment as instantly I had become very ill.
Still on the floor, I managed to get the attention of a local friend by calling him. My friend came to the house and realised there was no way of getting me off the floor, it became apparent that from the waist down I was completely paralysed.
The moment I collapsed was at the point when the tumours put enough pressure on my spine to break open my spinal cord.
An ambulance was called and they took me to the neurology department at the John Radcliffe Hospital, suspecting a slipped disc or sciatica. Over the next couple of days I was given a variety of tests, examinations and scans, until after approximately 48 hours I was given the shocking news that I had non-Hodgkin’s lymphoma, a very aggressive form of cancer.
I was told that I had two very large tumours - approximately the size of apples – at the base of my spine. The moment I collapsed was at the point when the tumours put enough pressure on my spine to break open my spinal cord.
From there I was then transferred to the cancer/haematology unit at the Churchill Hospital in Oxford where I stayed for almost 9 months. Doctors immediately started very intensive and aggressive chemotherapy - It was the most horrendous experience ever. Each cycle of chemo lasted for 19 days, for 24 hours a day. I would then get a five day break before starting the next cycle. I had fifteen cycles.
Each cycle of chemotherapy made me sicker and I lost all of my hair, went down to just over five stone in weight, was continually very ill and developed secondary infections such as pneumonia and retinitis.
The cancer spread and various other conditions arose. It felt like I was in and out of the operating theatre every other day and I had an emergency colostomy operation to make my bowel inactive due to the disease.
I was paralysed from the waist down the whole time due to the compression of the tumours on my spinal-cord and in December of 2011 – when I was particularly unwell - it seemed unlikely that I would live to see the New Year.
Life threatening situations arose, such as anaphylactic shock when I became allergic to penicillin. I also went into respiratory arrest and needed a lengthy period of CPR to try and bring me back, on top of the battle of fighting cancer.
I was determined to fight with everything I had and I wasn’t going to give in, despite the fact that my health was deteriorating daily along with the tremendous weight loss and weakness. I made it into the New Year.
Then, in April 2012 after another MRI scan (on my birthday!) I was given the most unbelievable news. The two apple sized tumours have both shrunk to half the size of a pea. For all intents and purposes, this meant that my cancer had gone into remission which was absolutely amazing!
Of course I was still exceptionally unwell - and would be for some years to come – and the team at the hospital didn’t quite know what to do with me. I was in remission from cancer but was still paralysed from the waist down.
At this stage I was transferred to the Oxford Centre for Enablement (OCE) where I would stay for the next three months with the goal of enabling me to reach a level where I could potentially go home in a wheelchair with some degree of independence. I had intensive physiotherapy with the occupational therapists, working on everyday tasks as simple as washing and dressing myself, getting myself a drink, alongside learning about life in a wheelchair. I was told it was highly unlikely I would ever leave a wheelchair and that I had to make the best of the situation I was in.
I made a commitment to myself that I would push myself as hard as I could, and I would at some point leave a wheelchair regardless of how bad my mobility was.
The entire time I was at OCE I was desperately unhappy. I had just spent nine months fighting cancer and was now having to accept a life ahead of me wheelchair-bound, grieving for the life that I’d left behind which had always been very active and sporty.
Every day when I was told to make more effort and to accept I wouldn’t leave the wheelchair I kept motivating myself to push further and harder because I was not prepared to accept a life of being wheelchair-bound and dependent on people for everything.
This is when I made a commitment to myself that I would push myself as hard as I could, and I would at some point leave a wheelchair regardless of how bad my mobility was. I eventually went home in September 2012 after a year in hospital, and here my next challenge started.
My bed was moved to my living room, I was wheelchair-bound within my house and I had four care visits each day. I was extremely dependent on others.
On a daily basis I focused on getting stronger and stronger. I was still paralysed but with determination I would be able to stand with people supporting me or independently weight-bearing and leaning on a Zimmer frame.
So, after a 51 week battle, almost 20 operations at this point, 15 cycles of chemotherapy, and a catalogue of various other medications due to secondary infections such as pneumonia, I was home but feeling fragile and weak, rather low in my mental state and had mixed feelings about the future, this is where my battle really started.