Part I - News
Exactly Two years ago I was in New York on holiday with Alison. We had a tremendous time seeing all the sights, eating all the food and revelling in the buzz of the only city where I'd be happy to live; I'm a convert to the country at heart. But beneath the pulse and thrill of exploring a place flowing with energy, I had an inkling that something wasn't right.
Prior to the holiday I'd been low on energy (lower than usual approaching half term), my cycling regime had dwindled to virtually nothing at all and yet I'd been losing weight. In New York it was wonderfully cold - ice blue skies and -5C made for perfect walking conditions and beautiful light for photography and yet at times even my layers of goose down couldn't keep me warm; often my fingers would become so cold it was impossible to operate the camera. I put it down to a virus and returned to work with tales and photos of NYC wishing for a break to recover from the holiday.
A week or so later I sat in the car park at Asda in Halifax. I'd dived out of work to run an errand but in truth I just had to get some air and some space to think. During the previous night I'd experienced my first night sweat, waking up in the darkness to find the sheets and duvet completely drenched and on the bed a damp outline of my body like a soggy cartoon crime scene. It shocked me. Panicked me. Totally preoccupied my thinking. With the engine running and heating pumping out to ward off the shivers, I did what I'd sworn I would not do - I googled my symptoms. Onto the screen jumped a list of web pages all featuring the same words. Hodgkin Lymphoma. My pulse quickened, breathing became short and I opened the car door to wretch onto the floor.
Truthfully I did not know what Hodgkin Lymphoma was but I knew it could not be good. Fumbling the phone with shaking hands I immediately called my sister - a Doctor who at the time was working on haematology in Liverpool. I babbled a mostly incomprehensible sentence but the gist of my meaning got through - is it possible I've got cancer? Firstly she was appalled that I'd googled at all but she calmed me down and directed me to the GP. Take a list of your concerns and request that you get blood tests as soon as possible. Sage advice.
What followed was like suddenly becoming entrapped in the eye of a storm in a small boat on a churning, threatening ocean. It was the start of two years of scans, tests, chemotherapy and the most medically brutal procedures that a person can endure until four weeks ago when the storm became calm. My body, once almost overwhelmed by cancer, was found to be free of disease. I am in remission.
On hearing the news, delivered in typically laconic style by my brilliant transplant consultant Professor Cook ("What's up? You’re nervous about the results? Don't be..."), Alison and I sat in dumbfounded, almost punch drunk shock. It sounds ridiculous to say it but hearing the absolute best news possible was just about the only possibility that we hadn't planned for because after two years of failures and partial successes, you develop a staunch realism that borders on the pessimistic.
Alison and my family will absolutely kick my a##e when they read this, but I had a very clear plan in my head about how things would go if the cancer could not be totally eradicated: Live every day as if it’s the last. By far and away the worst part of the process after the treatment is the waiting for test results. I’d been like a coiled spring but thanks to some wonderful advice and support from a psychologist called Professer Steve Peters, I had been able to rationalise my thoughts to a certain degree and drawn up a plan based on likely outcomes. I’d bought a fast car which I intended to use over the coming months for as many adrenaline filled track days as possible that could be enjoyed alongside many delicious meals and holidays. Alison would finish working to share the time with me and if and when the time came when I was too weak to enjoy these things, I’d deal with that in due course. I was going out with a bang. But it didn’t happen like that and I couldn’t quite comprehend it.
We virtually staggered from the office, joyous exhaustion causing slightly wobbly legs. It's taken me two weeks to start this blog and 2 more weeks to finish it because I'm still not sure the full enormity has sunk in and although we might only be at half time in terms of growing a new immune system, it feels like we're 10 nil up and heading for victory.
Part II – Reflections
I’ve spent hours reflecting on the last two years in the month since I got the news that no one had planned for. I told one of the other Doctors that we hadn’t really expected it to happen and he got pretty offended by my lack of faith – “That’s what we do here. We make it better.”
My faith is something I’ve thought about a great deal during the whole period from diagnosis to remission. I was raised as a Catholic, strayed away from the Church during my teenage years and rediscovered a reason to be a part of it again through charity work at university. Many of my closest friendships have come about through the Church and best of all, it’s what brought Alison and I together. I’ve worked in Catholic education for 9 years and know that Faith Schools have something about them that you can’t measure, it’s just there. For two years I’ve received countless cards, prayer intentions and letters assuring me that God was on my side, and yet I’ve struggled deeply to believe this, reserving most of my prayer for angry rants directed “upstairs”. At times I even got angry at the thought of so many of my former pupils praying for me when they could be praying for way more important causes. I wasn’t angry with God about my situation – I always believed we’d win through there – but I was enraged by what the stress and worry was doing to those around me. It caused visible pain to those I love most and that just didn’t seem right or fair. I can’t speak for them though and I know how much support and comfort my family gained through prayer. I’m not yet the prodigal son; it’ll be a while before I can bring myself to stride back through the doors and thank God, but there’s definitely a part of me that feels alongside the science, there’s a small element of the miraculous.
I’ve thought about a great many other things too….
What if I lived outside the UK and didn’t have access to the NHS? Very few health insurance policies would have got me to where I am today. I reckon the bill for my treatment probably now stands in the region of £1 million. I’ll never pay that back in my lifetime no matter what I do as it seems unlikely that I’ll be signed by Barcelona any time soon. We all know it but we perhaps don’t hear it often enough – the NHS is awesome.
Will the worry of the cancer returning ever truly go away? After the initial exhausted disbelief, I’ve lived at a thousand miles per hour over the last couple of weeks, riding a wave of adrenaline, but haematologists never say you’re cured because they can never be totally sure. That’s a tricky one but I’ve reached the conclusion that I owe it to everyone who has treated me and supported me to make the most of what is a wonderful second chance. I owe it to my donor; I’ll write to him in due course to say, “Hi. Thanks for saving my life.” Where would I be without those who’ve supported me? The truth is, I wouldn’t be here. It is having so much to live for that has kept picking me up off the canvas. Simple as that.
When will my body start to return to normal? It’s hard to know exactly but last week I started simple training again in earnest. Basic core strength exercises based on pilates because after 2 years of virtual inactivity, I'm like a jellyfish. At first, I was shot after 10 simple squats but this week it’s up to 40 although I still have to smile wryly in knowledge that I used to push 100kg in the gym for fun. Will I ever get back there? I’m not sure I want to. It’s nice being able to get trousers and jeans to fit without breaking out the XXL…..
My immune system has a long way to go but soon I’ll start having my baby jabs – the same as little ones have to inoculate against childhood diseases like mumps, measles and rubella. I’ll catch many colds along the way and probably a few much worse illnesses but in time, I will be able to walk down the street without glowering at anyone who dares to sneeze in my vicinity and at some point, my body will feel like my own again. What a strange and wonderful thought.
Part III – What next?
Finally, I’ve spent a lot of time wondering, what on earth do I do now? That remains a question unanswered so I’m going to go away, think about it and update this blog over the coming months.
Thanks to all of the beautiful people who have got me to this point – the next bit is very much up to me and I will not let you down. I’ve got a lot of living to do and I’m excited.
For anyone approaching a donor stem cell transplant the website http://www.allinex.org/ has been set up by St James’ University Hospital and has a wealth of useful information to help you make sense of what is a massively complex procedure and hopefully allay some of your concerns.
Leukaemia and Lymphoma research offer support services and advice on all matters surrounding your illness so that you can arm yourself with information. They’ve also helped to fund much of the research for treatment that’s got me where I am today, so thank you LLR.
The Anthony Nolan Trust saves lives. Get everyone you know to sign up to be a part of the donor register either through Anthony Nolan or the National Blood Service. My donor was a 30 year old male from the UK. I may never meet him but he saved my life. That’s awesome.
You cannot underestimate the importance of your mind in beating cancer. I was lucky enough to get some personal support from Steve Peters for which I am so very grateful but if you want to gain some understanding of how you can mentally tackle your situation, read his book, The Chimp Paradox. It’s easy to read, clear in its purpose and will help you control the Chimp inside your mind that’s distracting you from the important business of getting better.
The photo at the top is of Alison and me walking in the Pennines near our house because we can!
If you've recently been diagnosed with Hodgkin lymphoma and have yet to receive treatment you could be eligible to take part in a new clincial trial. Read more here.