When You're Going Through Hell, Keep Going

For a long time, I haven't known what to say but now my thoughts are becoming clearer. Hopefully, they may help someone and, perhaps, you. 

I haven't kept a diary of the events since my cancer diagnosis in late 2022, perhaps because I was in denial about it. Even writing that sentence is hard, because it's confirming and accepting the most traumatising event of my life. Of course, I didn't want it to be the case. I haven't wanted to chronicle my experience during treatment or my continuing recovery from it, perhaps because I've felt that to do so would jeopardise it. Recovery is not guaranteed and the truth is that the treatment was so brutal, I am now more susceptible to illness than ever. I'm in a precarious position and you don't look down and take stock when you're walking a tightrope, you focus only on the next step. You don't look back and you don't look beyond the step in progress. For some reason, the influence of that fear is now outweighed by the hope that I can help others who have been, or are about to go, where I've been.  

When I was diagnosed with cancer in August 2022, it was, in a sense, no surprise to me. I had the same cancer that killed my father at more or less the same age and so, when the throat pains came in May of that year, I knew exactly what it was, long before the medical profession did. For a while before the formal diagnosis, I thought I might be ready for what would follow. I had seen the suffering, the partial recovery, the recurrence and the drawn out and torturous way my father died. I wasn't ready, of course, because unless you've actually had cancer, you can't be ready. Even in that case, I'm not sure it's possible.

I have always been what some people call "healthy living", mainly because I love competitive sport but I've also believed it would give me a good chance of avoiding what turned out to be the inevitable. Consequently, when I was diagnosed, of course I was terrified, lying awake in the witching hour, sweating, but the predominant emotion was fury. I was beside myself with rage at the universe but mainly at my body. It had betrayed me. It had betrayed my family and, most of all, my children. If you've ever had to tell your young children you have cancer and watch their trembling faces, their heartbreak, panic, confusion and profound fear, you will know what I mean.

The most harrowing meeting with the doctors was not about the diagnosis, it was about the PET scan which reveals the degree to which the cancer has spread and, therefore, whether or not you can expect any chance of survival. I was mute with fear, struggling to read the body language of the various doctors and nurses in the room. Of course it was pointless: they attend many meetings of this sort every day. On being told that my cancer had not spread and that it was treatable, I broke down in tears and still do nowadays if I think about that meeting. The consultant said there would be no guarantees and told me that there would be six weeks of treatment that would be extremely tough. She asked me how I felt about various things. I told her it was a very simple matter for me: that I was a lawyer and knew about the law but knew nothing about medicine. She, however, was a consultant and certainly knew all about medicine. I told her that I would not look on the Internet nor do any research on the matter. I told her that I would read only the material she gave me and that I would take any medication and turn up to any session she advised. To this day, my Internet search history does not contain the word cancer, chemotherapy or radiotherapy. This was not a planned or well thought-out strategy: it was a gut reaction to the situation. Since then, I have spoken to other cancer sufferers who told me that the worst mistake they made was to research their cancer and/or treatment on the Internet.

The treatment was more brutal than I could possibly have imagined. I'm not a great athlete but I know how to suffer and I had to use every single bit of my experience and all my best mind tricks to get through it. I was given six weeks of chemo and radiotherapy: the former once a week and the latter every week-day. Before the radiotherapy started, I went for a mask fitting. This involved lying on my back and having a warm, pliable sheet of plastic pressed over my head and shoulders. I had to stay still while it cooled into a hard plastic shell that fitted tightly over my face, neck and shoulders. The shell had fixings at the side, allowing it to be clamped down to the bench, holding me rigidly in place during the 20-25 minute radiotherapy sessions. I am claustrophobic and was advised to use Diazepam (formerly Valium) to cope with it. I did so on the first occasion but couldn't detect any effect and so went without it for the rest of the treatment. In order to administer the weekly chemotherapy, the nurses favoured a particular vein (they called it a motorway) on my right forearm for fitting the cannula. It was on the top of my forearm, not the soft underside, so when removing the tape holding it on after the session, some of the hair was pulled out. They apologised and told me to shave my forearm next time. I forgot to do so and it became a joke between us. When I still hadn't shaved for week three, I told them I wouldn't for the rest of the treatment because I didn't want to deprive them of their fun: a silly idea and unplanned. I was not aware of the reason for taking this position but I seemed to need these silly "victories" and refusals to flinch or give in.  

By week three, I was optimistic that my decision to decline a peg (feeding tube directly into my stomach) was a good one and that I'd be able to swallow right through the treatment. Unfortunately, I was not prepared for weeks four to six and several further weeks. By then, the effects of the radiotherapy had turned my throat into a raw mess. The pain was so severe that, even with a cocktail of drugs including liquid morphine taken orally, swallowing caused shaking, tears, white-knuckle clenched fists, panic and breathless exhaustion. I arrived at the hospital for my sixth and final chemotherapy treatment barely able to stand unaided. I wouldn't agree to use a wheelchair, however: another silly victory. I checked my resting heart rate regularly every day. During the treatment it had risen from the usual 48 beats a minute to 58 as my system tried to deal with the toxins. It was often higher and so I would try to reduce it as much as possible by relaxing and breathing steadily. Getting it down to within ten beats of 48 a minute was another silly victory, not to mention completely arbitrary, but again, it made a small difference. Having been escorted into the chemotherapy ward, the nurse looked at me worriedly and explained that if I felt too unwell I needn't have the chemotherapy as it was only one session and that it was common to miss one or two if not feeling up to it. For me, the question was only whether or not my weekly blood test showed I could accommodate the poison. She said that it was borderline. I asked her to proceed. This decision was not motivated by bravery but by fear. If the cancer returned and I had not gone ahead with the session, I would never be able to forgive myself.   

For several weeks my only daily objective was to swallow five small bottles of Ensure (sludge containing everything you need to survive). It took me all day to achieve this. Drinking one bottle would take up to an hour, after which I would slump into a stupor for a while, coming round in time for the next excruciating assault. Eventually I couldn't manage it. I lost weight, became too weak and contracted an infection that sent me to the Royal Berks.

There was no room in the cancer department and so I was put into a cardiology ward. It was chaotic, noisy at night and the nurses had no expertise in cancer care. They refused to give me the prescribed dose of morphine because they said it was "too much". I could do nothing to address this as I was unable to speak. I wanted to write things down for them but they were incredibly busy and didn't have the time to give me paper and pencil. Even when they did, many were not native English speakers and had trouble understanding my notes. I couldn't swallow but there were complications with the feeding tube. They managed to force the tube up my nose and down into my stomach but pushing any food through it made me vomit. I insisted they kept trying but after the fourth attempt they would not continue. The tube was painful and useless and it also prevented me from trying to swallow normally. There seemed to be no other plan and, although I was on a drip, I went without food for another forty-eight hours. Eventually, after pointing out to him that if nothing was done I could not recover, a consultant offered to pull the tube out. Despite having dropped to 10kg less than my usual weight, the hydration enabled me to gain enough strength to be able to begin swallowing the Ensure again.

During such harrowing experiences, thoughts are extraordinary. The gymnastics one finds oneself doing in order to get through the next few days, few hours, few minutes, few seconds, is incredible. The classic technique of breaking a problem into manageable bits doesn't really work because none of it is manageable in any ordinary sense; and this is only dealing with one's own suffering, let alone the suffering of family and loved ones. Eventually, I found myself assuming I would die soon and it didn't seem like a bad option in the circumstances, for many reasons. It would be a way out of having to endure any more pain; the fear of what new horror was next; the doomed struggle to recover; the trauma of dealing with anyone else's feelings; and the inevitable disappointment of having to do all this again at some point. Gradually however, somehow, very quietly, an underlying drive to survive seemed to take effect. Nothing about this was intentional. I made no decision to employ any strategy. Consciousness is a mysterious thing and I have no idea where this compulsion came from. I felt I had surrendered but in another, very important sense, I definitely hadn't. 

I was moved to the cancer ward, which was an oasis of calm and where I felt I could trust the care. Gradually, I found myself able to get up and walk more steadily. I began walking a lap of the ward once a day, then twice, then three times in a day. I can't say that I decided to do these things with any plan in mind: it was just easier to do them than not to do them. It was a mode of being with which I was familiar. It was a kind of training, albeit with no goal. I was living purely in the moment and had no capacity to do anything else. Again, there was no decision to limit my thoughts in this way. It just happened. If there is any lesson I learned from that experience, it is that there is a force directing us which is deeper than anything we can control. It is therefore unpredictable and inaccessible. It had put me back on the tightrope.

That was a year ago now. Since then I have been given the all-clear and my recovery continues, albeit not in a straight line, but I am no longer on any medication. I have had twenty counselling sessions, all of which have been helpful. One of the most memorable sessions was entirely unanticipated. After a few months, rather than being a positive thing, my living in the moment had begun to hinder me. It became a burden. Although I had resumed working at almost full capacity, looking after my children and seeing friends, I couldn't plan or imagine anything in the future. This meant I was unable to participate in some normal, arguably essential, activities. Then, with no intention to do so, I became aware of wanting to plan a holiday: something nice, in the future. I mentioned this to my counsellor and the act of expressing the thought out loud suddenly made it real. Without any expectation, I felt a huge surge of emotion and became a sobbing wreck, unable to speak. "You know what you've done there, don't you?" said the counsellor. I confessed I didn't. "You've dared to hope." she said.

In 2014, I rode an original 1975 red Mk2 Raleigh Chopper right up Mont Ventoux in order to raise money for cancer research in memory of my father. The ride was covered by the cycling press and raised around £10,000 donated by people from all over the world. During last year, I had been considering doing it again this year, ten years on. The idea was to raise more funds for cancer treatment and, in some way, to mark my recovery. I have decided against it now. I don't think I am capable of doing it any more. I have acknowledged that I am not the same as I was and, importantly, begun to accept it. People sometimes ask if cancer has changed my view of life and my priorities. It hasn't changed the latter: my priorities remain my children and other loved ones; and my health. It has, however, intensified my emotions significantly. I'm moved to tears regularly, sometimes by the beauty of nature or music but most often by empathy. It's as though daring to hope again has swung the pendulum further in that direction than it has ever been. Perhaps, rather than dealing with uncertainty by cutting my losses and protecting myself from pain by shutting myself down, I'm instead investing emotions in as much of life as possible, because this is the only life I'll get and every additional day is another I might not have had. I watched my children perform at a Christmas music event in December. They were on for about half an hour. The hall was dark and loud and I was pleased because I was able to avoid embarrassing them as I sobbed through the whole performance. A friend saw me and said "You must be so proud". I was, as any parent would be, but that wasn't why I was so emotional: it was the thought that it could have been different. I might not have made it. I might never have seen them play again. It was gratitude and pure joy at being alive.

Am I still angry at the universe and furious with my body for betraying me? I am constantly monitoring it. My energy levels are often very low, particularly in the evenings. The children are used to me going to bed at 7.45pm or thereabouts, well before they do. Any twinge in my throat is a severe jolt. Sometimes I get a pain that I'm sure feels the same as the one that heralded the beginning of the whole ordeal and it triggers real fear. I can't control that response and so I'm trying to learn to live with it. My whole mouth is still permanently uncomfortable and dry. This condition didn't start until several weeks after the treatment had finished. I was still exhausted and my state of mind very fragile, so when the consultant explained that my mouth and throat would never fully recover, my reaction was to ask if he had a gun in his desk and, if so, could he shoot me in the head. I was in shock and couldn't tolerate the idea of such pain remaining indefinitely. The discomfort has reduced a bit since then but, mainly, I have worked out a way of living with it. Most of the time I am able to prevent it colouring my view of life. 

The consultant explained that the six-week course of chemo and radiotherapy I underwent is one of the most intensive and violent currently prescribed in medicine today. For a long time this upset me, not because I regret agreeing to have the treatment - I don't regret it at all - but it was a violation: a savage assault from which I will never fully recover. We grow up with stories, mainly with happy endings and which contain the idea of justice and people getting what they deserve. There is an important sense in which these stories are valid but it's not in the sense we really want. Unfortunately, the default, happily-ever-after ending is nonsense. Bad things happen to bad and good people. Some people never get what they deserve, good or bad. 

One of the last things my father said to me continues to be useful in so many ways. He could no longer speak during his last few weeks and so we wrote to each other while I sat at his bedside. I still have the scraps of paper containing these scrawled conversations. During one exchange I had expressed frustration at not being able to control a situation. He replied "I don't want to scare you but we have no control over anything that really matters!" What matters, therefore, is that we learn from events and that we adapt accordingly. No, then, I'm no longer angry at the universe and don't feel betrayed by my body. It's doing a pretty good job so far under very difficult circumstances. In any case, it's the only one I've got and, with luck, it's going to get me from Henley to Paris on a penny farthing this June to raise money for Macmillan Cancer Support but that's for another chapter.