One shouldn’t let your job define you, nor should you let cancer do the same. It’s you, stupid, it’s who you are and those you surround yourself with; your family, your friends, that combine to define.
It was October 2017 and, frankly, I had been feeling a ‘bit rough’ since January and probably earlier than that if I’m honest. A gradual deterioration, nothing to worry about… just age creeping up as I’d turned 50, maybe one drink too many the night before, probably the stress of work, a bit of a cold, too much travel, caught a bug from the kids. Not to worry – I’d get over it. Besides, the doctors had said it was nothing – take a Nurofen, stop stressing.
My mother was only 19 when I reared my sweet ugly head in The Canadian Red Cross hospital in Taplow, Slough, a rather grim industrial suburb of west London made infamous by Sir John Betjeman, “Come friendly bombs and fall on Slough. It isn’t fit for humans now” and then, more recently, by ‘The Office’, as “Europe’s largest trading estate.”
My father left us on Christmas Eve when I was just three, which was a nice touch, giving me an early lesson in the predominantly male art of complete and utter selfishness. Still, he married another couple of times, broke the hearts and spirits of a few more women and is now on his own, in a care-home, near Slough. So… My mum, on the other hand, was (and still is) a wonder: beautiful, funny, strong and smart. We lived quite happily together until we were joined by my soon-to-be stepfather when I was seven. He, to his credit and my eternal gratitude, took me on and brought me up as his own. They married and we moved to a pub, The Jolly Woodman, where I enjoyed a charmed youth; hanging around in the bar picking up on local gossip, (drunken) political opinion and learning quick maths through scoring darts, shut-the-box and pontoon. I learned more in the pub than I did at school, where my main focus was football, girls and music. During weekends and holidays I worked on Slough High Street; I was a video game demonstrator at Woolworths, a coffee maker at BHS and a jeans salesman at Jean Jeanie, the coolest clothing brand (next to Mr Byrite) in the whole of Berkshire. I was paid £10 quid a day plus 1% commission. It was brutal: flogging ribbed stretch jeans, double breasted silk shirts and pixie boots. I just wanted to make enough to get out and as soon as I’d finished school, I disappeared to Europe where I spent two fabulous years working the Vendange in France and ski-instructing in Austria and Switzerland.
At 20 I realized, while it was beyond fun, it was time to get a proper job and do something better with my life, so I joined the Army. Initially as a private but I was fortunate enough to be spotted as ‘Officer material.’ I went to Sandhurst, the Royal Military Academy, and embarked on a short and, occasionally, glorious career. I served two tours of Northern Ireland, from 1989-94, which was going through a turbulent period before peace finally came in ’98. My first tour was to South Armagh where, as an inexperienced 21 year old 2nd Lieutenant, I had command of 30 soldiers in what was termed ‘bandit country.’ It was a far cry from Slough High St and the Alps. Mortar attacks, machine gun assaults, punishment shootings, petrol bombs and riots were a daily occurrence and, strangely, I felt more alive than I had ever been. I returned to Belfast as a Captain in 1992 where I worked in Intelligence and thought that this was it. My career and life sorted. Then I met a girl and, as these things do, everything changed.
Noni was/is the most beautiful woman in the world and I was hopelessly smitten. While she thought I was ‘a bit of a dick’ (she had a point), she was interested enough by a man in uniform to let me take her out when I was back on leave, which was quite often since I worked 20 days on and 10 days off in Northern Ireland. I worked my charms and it was made very clear that if the relationship were to have any legs, I’d have to keep mine by leaving the Army and getting a proper job. So the first role I was offered was to clear mines in Afghanistan and Cambodia. That very clearly didn’t pass the Noni test, so I got a job in the City of London and we married. The maths from the pub and the salesmanship from Jean Jeanie worked well and I did alright, although my first job was at Barings, which promptly went bust (not my fault, I hope). While I have never really enjoyed any job like I had loved the Army, the cut and thrust suited me and I was able to travel the world, without being shot at. We quickly set about having a family and Josh came in ’96, followed swiftly by Romilly, Raff, Zac and Ziggy. We enjoyed a great life in South London and made great mates; some of whom excelled themselves as friends years later.
My travel bug was never extinguished and, having specialized in emerging markets, I was eventually offered, in 2011, a great role in Hong Kong with a slightly bonkers, but incredibly dynamic, Korean firm. I jumped at it and we went, lock, stock and barrel, 7000 miles away to the greatest cultural melting pot on Earth. With our five kids, we traveled throughout Asia; volunteering at a children’s charity in Cambodia, riding bikes in China, skiing in Kazakhstan, boating down croc-infested rivers in Borneo and even getting caught in a devastating and terrifying earthquake in Lombok. We had the time of our lives! And the best bit of all was that I had a brilliant, funny, mad, loving family to enjoy it all with.
In 2016 I moved to a new firm and, with the move, came, for the first time in my career, some work stress. I tried to keep perspective; I should have kept perspective but it wasn’t easy. The demands placed on me and my staff felt unreasonable. The bureaucracy was incredibly frustrating and the ways of doing business completely alien to me. I was flying every week, to Beijing, to Europe, to the US, while not progressing the business, mostly fighting internal battles and generally getting on the wrong side of the local management. In my previous jobs, the travel and the responsibility was a privilege, here it felt like a sentence. I was falling and I was struggling…so I worked harder and stressed even more.
By early 2017, I was beginning to feel it. I began to get ill, quite often – little things, a slight cold, occasional headaches, that kind of thing. My eyesight, normally pretty good, was blurring, I was short of breath and felt strangely unfit, even though I ran every day. By May, after I had turned 50, I really began to struggle; my eldest son remarked, in a slightly amused but actually concerned way, that I was getting weak as I kept stopping for breath on a hill, “Come on old man”. By August, my pallour had changed to a greyish-yellow and strange lumps had appeared on my neck, under my armpits and my groin. I had terrible backache and then went down with pneumonia. Clearly there was something wrong and so I finally went to the doctor; a local Hong Kong GP. He sent me away with a packet of Nurofen and an instruction to “take a rest” which, of course, I didn’t. Our family holiday to Sri Lanka was typically unrelenting – touring across the country, surfing, safari, kayaking. I felt terrible as I could see the kids were worried that I was really struggling. My backache was excruciating, my heart kept skipping and I was not sleeping because the night sweats were saturating the bed, exacerbating my inertia and general bad mood.
Back in Hong Kong in early September, I went to the doctors twice more, seeing two different GPs. Again, I was sent away with one even suggesting I go and have the lymph glands in my neck (by this time bulging over my collar) ‘drained’. Incredible. So, on the eve of a globetrotting trip I had planned, to London, Luxembourg, New York and Miami, Noni took me to see a Western medical practice so I could have a vitamin C jab, in a desperate attempt to regain some energy and fizz. As I checked in, the nurse looked at me and, with some concern, asked whether I would, in fact, like to see the doctor. His name is Tim Trodd and, I suppose it’s fair to say, he saved my life. He cocked his head to one side and studied my pasty face. He then examined me and made me promise that I would not board a plane that evening. I knew it was bad and I promised I wouldn’t. He then sent me to have a scan somewhere else in the city and booked me an appointment to see a Dr Ada Ma at another address later that afternoon. Like a good soldier, I did as I was told and after the scan I went to the offices of OnCare to see Dr Ma. I suppose the name gave it away, OnCare…Oncologist Care; an oddly flippant piece of branding!
At OnCare they took my blood and 30 minutes later Noni and I were sitting opposite Dr Ma, a local Hong Konger trained in oncology in the UK, as she gave me the diagnosis. I had a form of Leukemia, most likely Chronic Lymphocytic Leukemia (CLL), but possibly Acute (ALL). I was at stage 4 and my blood counts were so low that it was a miracle I was still functioning at any level. I should have been dead; either through a heart attack (no white blood cells), or through anemia (no red blood cells), or just bleeding out (no platelets). She explained that I needed to get to the hospital right away where they were waiting to give me a blood transfusion since my counts were so low I wouldn’t survive much longer. We’d know in a few days whether I was ‘chronic’ or ‘acute’. If the former, it was treatable, the latter probably meant curtains. I didn’t have enough time to process everything I was being told. Noni was in floods of tears but I felt strangely calm; I just went with the flow, took a cab to hospital and got on with it as they pumped bags of blood and plasma into me. For the next week I went through the same each day; scans, bone marrow biopsy, needles, more blood taken and given.
We were told it was chronic, which was sort of a relief. The leukemia itself is treatable but there is no cure. It is a lifelong condition and it may eventually kill you, or at least its effects will. CLL is a very common form of leukemia in the West, but rare in Asia, and usually takes hold in the over 70s. It was no wonder the local doctors missed it and assumed I was just another bombed out Westerner! No-one really knows where it comes from and how it is ignited in your system. There is, seemingly, a link to Eastern European Jews, the Ashkenazis, where there is a high incidence rate compared to any other ethnic group. My father’s family were Polish Jews; they escaped to Australia before the Second World War, so I assume this is where it came from. Thanks for nothing dad.
I took all this in and decided, right away, that I would focus on one thing only and that was to get through this and to win. Easy to say I suppose. But I felt that I’d been through the tough part already – the gradual deterioration of my body and my mind, the pain and confusion of feeling yourself going under and not knowing why, the eventual dawning that, but for the brilliant eye of a stranger, I would never have seen my children again. That was the hard part. Now I had a path to recovery; I was in good hands, Dr Ma was brilliant, super-efficient and quite scary. So I just had to stay on that narrow path and to not allow anything to push me off it.
Being half way across the world wasn’t ideal. While I loved Hong Kong, it wasn’t home but that was just something I had to deal with; I couldn’t fly so there I was. I was lucky to receive the latest treatment and I reacted well. There were to be six treatments over the next six months and I liked the regularity and definite structure. I treated it like being back in the Army; a long knackering exercise or a six-month tour to Belfast. I knew it would be shit but just kept one eye on the ending and the other on the immediate need of putting a line through each day. We didn’t really advertise my illness – people found out and reacted in different ways. I was staying in a Seven Day Adventist Hospital, so no meat! Noni would smuggle in glorious beef stews and casseroles made by her mates. She would bring chicken broth in a thermos and her ‘special’ green juice by the gallon (foul but invigorating). I gave up my beloved coffee and started drinking green matcha. I dropped sugar as much as I could. When I had scans they would pump my body full of glucose and radiation, so they could see where the tumours were, as the cancer cells come out to devour the sugar, like hundreds of pac-men on speed. Seeing that made me realise how important diet is to prevention and to recovery. I stopped drinking alcohol all together during my treatment, which may seem obvious. But in the midst of such an abnormal situation, it is easy for patients to reach for the past as a way to forget the present; booze can seem like your closest friend, while it chips away at your mind, body and soul.
A few friends would come and sit with me, listen to Radio 4, ‘The Shipping Forecast’ and play scrabble, or just quietly be there. Other friends from home would send me kind messages of support or just funny (and often unfunny) pictures and videos. My brothers and sisters-in-law flew over from London, as did my mum and my father-in-law. I was overwhelmed by the sheer kindness and questioned whether I would have been that type of quality person too. I hoped I was but wasn’t sure whether I had that selflessness. Some people hid; I don’t blame them. It’s a tough thing to confront but I would say that, as a friend, you should and you must be there. Love is the drug.
Of course, the most difficult problem, aside from overcoming cancer, was how to tell the kids. They ranged from 20 to 10 years old and all, we knew, would react in their own way. We gathered them together, on the sofa, two months in, when they were all back in Hong Kong from university and school. I explained I was ill and that I was going to get better. I had Leukemia. We avoided the dreaded ‘C’ word which is far too generic and fear inducing, but they immediately understood. Josh already knew and stood firm, a tower of strength and calm for his siblings; Milly, our artist, broke down; Raff, our soldier, was stoic but cried; Zac, our scientist, consulted Google and informed us I had a “better than 70% chance of surviving…which is good” and Ziggy, our precious baby, wept buckets. It was awful. It was my fault and I was dragging them into my disease and they would also have to live with it too; it infects everybody. I felt terrible guilt, to them and, of course, to Noni. Noni, who I had fallen in love with 25 years previously, who had stood by me as I whined about my jobs, who had given up her burgeoning career in fashion to raise our children, who had flown around the world for my career and who, now, was also staring into a well of darkness and uncertainty, not knowing whether her stupid husband would climb out. Of course, they were all amazing. The love and the staggering maturity they showed, even now three years later, was and is beautiful and I thank God every day for them. My treasures.
I pushed on with the chemo and the transfusions, never straying from that narrow path. During treatments I would sneak out of the hospital and walk down a real path, called Bowen Road, a beautiful three-mile pathway that overlooks Hong Kong’s famous skyline. I would force myself to walk ½ km to a small temple, which had tiny statues of dancing Buddhas and sweet smelling joss sticks burning. That became my temple and where I could find my peace. It also made me smile. I’ve never been religious; I’m a fair weather Christian but I do now understand the sanctity of life. We found the same dancing Buddhas in a shop in Hong Kong and we have them, dancing around, still making us smile, in our home today.
I reacted pretty well, never losing my hair (which was a big deal as there wasn’t a ton of it in the first place). My lymph glands shrunk back to normal and I began to feel like the thousands of mini tumours that had been crawling around inside me were disappearing. After six months of solid treatment I was retested and given the ‘all-clear’; I was in remission. You’d think that would be the end of it but, in many ways, the worst was yet to come, emotionally at least. In Hong Kong there was no post-care, no one to speak to about what to expect or to do next. No further blood tests, no consultation, nothing. So I flung myself back into work, which was welcomed by my employer. Work was strange; while I didn’t expect or want any sympathy, in some cases, people would avoid me as though I was harbouring an infectious disease, giving me a wide-berth and never meeting my eye. The layers of frustration and loneliness built.
I should have been rejoicing. But I was out in the same world again, still weak, still recovering from the trauma. I caught a slight chill from standing under an aircon unit and, bang, I ended up in hospital again with pneumonia. I had a hacking cough which I couldn’t kick and my head was constantly cloudy. I couldn’t focus and I began to feel like I was genuinely going insane. As it turned out I was suffering from what is known as ‘chemobrain’ but I had no-one to tell me what the hell was now happening. Surely I was better so what was going on? My family had had enough. My wife was at her wits end. But what none of us realised was that this is a common condition; cognitive impairment or cognitive dysfunction can happen for nine to 12 months after treatment. I was cross, my mind wasn’t working properly, I shouted…a lot, unforgivably I almost hit my son Raff for no reason at all. He stared at me in fear like he didn’t recognize me as Ziggy looked on horrified. I thought I was going mad and Noni, lovely Noni, told me she couldn’t carry on with me like this, that she even questioned whether she loved this person I had become.
In the fog of my mind, I realized this situation was untenable. Exercise was always my go-to place to feel better, to sweat out problems, mental or physical. I had read that exercise is the best natural cancer treatment, alongside diet. So I started running again and forced myself to not allow work to get the better of me and to shake out the gremlins in my head. The trails in Hong Kong are fantastic; looping in and out of forests, over hills and onto golden beaches; mile upon mile, and I ran like a maniac, finding the freedom I was craving. I signed up for The 2019 London Marathon, giving myself a specific aim was important in this mission. I began hiking again with Noni and we talked and we cried and we reconnected. As I regained my fitness, so my mind started clicking back into place. Of course, I had been stuffed full of drugs and they needed to be exorcised from my system and this was the way to do it. I was able to reflect on the past year and to kind of make sense of it all and to plan for the future.
I decided we needed to move home; to be back in our safe place, with family around and with healthcare that really ‘cared’. The children needed us all in one place too; the logistics of flying everyone around the world were complicated and exhausting, so it was time to take stock and to move on. So, last year, we moved back home to London. Leaving Hong Kong was, at the time, a relief. Of course I miss it now and wish my experience hadn’t been tainted by 18 months of sickness. I have started my own company too and work my own hours for my own benefit. In one sense I’m more patient at work nowadays, more understanding than I ever was. In another I do not suffer fools gladly.
The support here in the UK is incredible. I was welcomed into The Royal Marsden, as a NHS patient. My first consultation was with a wonderful haematologist, Dr Dima El-Sharkawi, who patiently explained exactly what I had been through, what I should expect, where the risks lie and how they would be there for me now and forever. How wonderful is that? We walked out of the meeting with Noni in floods and I could see people thinking “poor things, must have been bad news”… but, no, it was the incredible relief from knowing that there is a safety net and you are not alone in this. Initially I had quarterly blood tests and, as I have improved, it is now every six months. But they are always there, ready to answer any question, to listen to any worry, to act upon any issue. It is a family from family and you are made to feel protected in their arms. We are so lucky to have them. There are many support groups too where one can find solace and comfort for any form of cancer. From Macmillan’s to Maggie’s to the Teenage Cancer Trust and others. There is no need to feel alone.
I completed the London Marathon, running for a leukemia charity, in just under four hours, slightly slower than I had done 20 years previously, but not too bad. Noni and the kids cheered me on and I felt tremendous achievement and a release of sorts. So now we live in a lovely place, with our children all in the same country and often at home. We all suffered but they pulled me through with their unconditional love and extraordinary determination. When my step-father was himself dying of small-cell cancer, Noni was always there; I remember when he was slipping in and out of consciousness, he saw Noni and said, “Ash, I can see an angel.” She truly is. Noni looks after me and guides me through every day – keeping a beady eye on my sugar intake and catching my eye as I greedily reach for a second glass of wine. I am drinking some alcohol now in moderation, but very little. Frankly I can barely drink now anyway – I get what the kids call “greasy eyes” and turn a vibrant shade of pink. Not a good look. I think she also kind of likes me again (although I am still ‘a bit of a dick’).
But the truth is I do also put on a brave face. I feel as though I won that particular battle but I know I am weakened, I am vulnerable, and there is still a war to fight, which I may yet lose. But, in the meantime, I am a better person and will strive to improve – it is so important to self analyse and assess whether you are the person you want to be. I never did that before, so I suppose cancer has also helped me. I will be that friend who stands by you when you fall. I will be that husband who loves you unconditionally. I will be that father who protects you to the very end. I will be that stranger who will tell you to go to a doctor when you feel sick… and to keep going back and back again until you have it nailed. Never give up.