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I had a moment walking home last night when I was struck by just how normal everything was. I had been in the beer garden with friends for a work leaving do and was pleasantly buzzed after a couple of drinks. It was after midnight but the heat made it feel like 8 o’clock. The night had a muffled orange glow and, too hot to sleep, people were still out on the streets, not ready for the evening to end.
With cancer, normality is elusive. It is what I crave. Those daily pleasures I took for granted now hold a magical power over me, the mundanity that we spend our lives denigrating is now what I dream of. So when normality strikes after a while — and it did, walking home that hot happy night — the effect was momentarily bizarre. How could I be here, so happy, on such a normal end to a normal evening, when I had cancer and was undergoing chemotherapy? How could those two C-words — with their harsh lingering hiss — coexist with the reality of my walk home? It all just didn’t make sense.
I was nervous going out that evening. Like a hostage with Stockholm syndrome, a part of me has become attached to having cancer, to being ill. There is an unhealthy dependency there. I was excited to be seeing my colleagues, but nervous about whether I would make people uncomfortable and they wouldn’t know what to say to me. Nervous about the lack of lockable doors in the beer garden toilets, which makes emptying the shit bag a challenge. Nervous how I would cope in the heat, still a little weak from the chemo.
The beer garden at Riegrovy Sady, nestled in a thicket of trees at the top of a hill, has been a constant in my Prague life. It has always defined the summer, with its wonderfully utilitarian vibe that Czechs so effortlessly create. The beer is cheap and the guys serving are always drunk and sweaty. The toilets are foul, marijuana smoke hangs pleasantly in the air, and the foosball tables are always packed. Innovations come and go — cocktail bars, an expanded menu beyond the two types of klobasa, more big screens — but the staples, the cheap 10-degree beer, the benches draped in trees, the sizzling storms and mad rush to shelter from the torrential downpours, the same old faces year in year out, never leave.
You feel awkward turning up to a party with cancer. You desperately don’t want it to be about you, but inevitably it will be just a little bit, awkwardly and unwelcomely thrust into the limelight. Illness is an elephant in the room and, understandably, it makes people nervous. They don’t know what to say; sometimes people shuffle a little in their seats, wondering whether to bring it up or whether to let it slide.
But my colleagues were wonderful and I needn’t have worried. We quickly dispensed with the how-are-yous and the handshakes and the kisses and I made a couple of awkward cancer jokes and then it was gone, almost forgotten, and I was just me again — me being me at a work party. A few people said how good I looked and, smart ass that I am, I always make the same joke, “good generally or good for someone with cancer?” — but, believe me, there is nothing, nothing, nothing that I like hearing more right now than someone telling me I look good. Not because I am hopelessly vain, but your self-esteem takes a bit of a knock with cancer. You feel weak, ill, withered, my clothes hang awkwardly off me. Having a sock of shit attached to one’s stomach doesn’t make one feel like an attractive commodity.
As the evening went on, as people left in dribs and drabs to go home, to various concerts around town, as the beers kept flowing, as big white Bavarian sausages were devoured, as the urinals started to overflow and the man collecting beer glasses could no longer keep up, and as the sky darkened but the happy orange glow intensified and the air sweetened, I could feel the cancer leave my body. It was just a normal evening in Prague shooting the shit, like so many before and so many to come. I didn’t think about lymph node ratios or extra mural venous invasion; the radio station in my head wasn’t stuck on a constant loop of survival statistics and pathology reports. The soundtrack was refreshingly new, yet strangely familiar. Someone talked about their girlfriend woes; someone dissected the Great Gatsby; someone went to the bar; someone was persuaded to stay for another beer; someone speculated about how many murders were inspired by Holden Caulfield; and no one — absolutely no one — had cancer.
I didn’t want to leave and the old me — a not-doing-chemotherapy, not-riddled-with-cancer me — would have wanted to keep on, to move on somewhere else when the beer garden started to shut down, to chase down what was left of the night. But it was late, my shit bag was happily filling up, and I needed to sleep. Nothing that night was tainted. Everything was wonderful.
There is a special lexicon reserved for people with cancer: we talk of survivors and journeys. The verbs we use tend to be martial: we “fight” or we “battle” cancer. This vocabulary of struggle is partly a response, an appropriate antidote, to the way in which we perceive cancer: as an invading force that needs to be defeated. Cancer has always been a disease that lends itself to military metaphors, with swelling armies of cells on the march, its positions firmly entrenched in our organs, its stealth troops quietly setting up distant outposts in our bodies.
As part of this lexicon, cancer patients are almost universally thought of as brave. It is rare to see a headline about someone’s death from cancer that doesn’t describe the deceased as brave. “Swinton Man Loses Brave Cancer Battle.” Since my diagnosis many people have said they have admired my courage — and I thank them for that, as it’s certainly better than being regarded a spineless, simpering worm — but it always leaves me thinking: How exactly am I being brave?
People have told me that if it were them, they would be curled up in a ball, locked inside a dark room, not wanting to be around people. They wouldn’t be on Facebook, or blogging about cancer, and certainly wouldn’t be making jokes. They imagine a kind of mental shutdown, a recoiling of mind and body, where they essentially place themselves in quarantine.
With this notion of how they think they’d respond to having cancer, just living a normal-enough life is seen as being brave: going to work, looking after the kids, climbing mountains, running marathons. But ask any one of those people with cancer if they would regard themselves as brave and most likely they’d tell you, no, absolutely not. The default response to cancer, from the patients I have met in real life and online, is normally one of resilience: a very practical sense of just getting on with it and making the best of things.
Courage is often defined as being afraid of something but carrying on regardless, like jumping out of an airplane, or charging a Taliban position to save your stricken comrades. The key difference is that such displays of courage come with a choice and those choices have consequences. We weigh the consequences, do the calculus, and make the decision. But for most people with cancer, there is little choice. I am sick and I will take the treatment to try to get better. It is no different to any other illness, no more gallant than undergoing surgery for heart disease. My treatment is a life raft extended in a storm and there is nothing remotely brave about clinging on for dear life.
Brave (or perhaps stupid) would be looking my cancer in the face and saying, “I’m confident I can beat this on my own. I’m going to the pub.” Or brave might be refusing life-saving surgery and chemotherapy, well aware of the grave consequences, because it is against deeply held moral or religious convictions. Brave would be choosing to meditate my cancer away so confident I would be in the curative power of energy pathways.
People have also said I’m brave for talking so openly about my cancer, but in a world overrun with cancer memoirs, cancer blogs, survivors’ forums, I’m not exactly breaking any sacred ground here. It is not 1910 and we are not shunting off cancer patients to windswept sanatoriums to die in a veil of silence. Nor do I have AIDS in early 1980s San Francisco, where prejudice, ignorance, and fear prevented people from talking openly about their conditions. And anyone who knows me knows I am something of an attention whore. I wrote a book about my feelings surrounding my father’s death, so I don’t exactly need much encouragement to share my inner-most feelings with a bunch of strangers. For me, having cancer and not writing about it would be truly courageous.
There was a piece recently in USA Today about Angelina Jolie’s decision to have a double mastectomy and go public about it. It was a sneery, uncharitable piece, written by someone with breast cancer, but it raised the question of courage.
To paraphrase, the author was basically saying that Jolie isn’t the brave one, the head-scarfed women battling metastatic breast cancer are the brave ones, fighting their terminal cancer with a dignified silence. That’s brave, not Jolie, with her looks, her publicists, and her army of stylists.
I suppose, being charitable to the author, I could see what she was trying to say and I certainly agree with her on the inevitability and laziness with which journalists use the “brave” word, but what was distasteful about the piece was her setting herself up as a judge of other people’s courage.
Going for an operation, let alone having a double mastectomy, is a frightening prospect for anyone. (I wept like a baby just before having my anesthetic for my resection. No stiff upper lip here.) Even if your chances are good, just having cancerous cells at large in your body with even the slimmest possibility of recurrence is a scary business. Cancer is not a competition of who suffers the most. I wouldn’t necessarily label Jolie as particularly “brave” for taking a sensible decision about her health as I just think that word is inadequate and unhelpful, but I certainly wouldn’t want to diminish what she went through by comparing her to others in trickier situations. There is no leader-board for courage.
So while I don’t think Jolie is particularly brave, nor do I think it is the best way to describe those women on the cancer ward. I bet they wouldn’t think of themselves as brave either and reducing their complex feelings and emotions to that easy catch-all “brave” is the kind of reductivism the author seems to dislike. People with more advanced cancers, with poorer prognoses, are just getting on with it because they have no choice, facing their own expiry date as people have always done, with faith, humor, fear, solace, sadness. They might regard themselves as fucked, unlucky, pissed off, sad … but brave, I’m not so sure.
So “brave,” while well meant and certainly not offensive, just doesn’t seem quite right to me. Ultimately, it is just semantics. Having cancer and being described as “brave” is just a linguistic tic, where a default terminology becomes so pervasive that we just use it without really thinking.
It is part of a lexicon that likes to give people with cancer almost super-hero-like powers, great warriors doing battle against an evil disease. It isn’t a lexicon that allows much humility in front of a rapacious enemy. Whenever I hear those martial verbs, or hear people being described as brave, I feel a little sorry for people with heart disease or Alzheimer’s, who, rather than warriors, tend to be portrayed as passive, voiceless victims, who never get to “fight” their illnesses but only ever “succumb.”
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The other day I was watching the Apple keynote about the introduction of the new iOS 7 when an old feeling surfaced: a pre-cancer feeling, a little wave of pleasure, something like buyer’s desire. Within the software’s crisply designed apps and new features, there was a promise of a better life, one that is more orderly, productive, and, yes, even filled with wonder. It is a life that looks like an iMovie demo reel, a beach scene with kids splashing around in a lush turquoise sea, bronzed, muscle-toned parents, an endless summer of joy.
But then as I watch the demo of the new calendar app, admiring its clean lines, the simplicity of its user interface, a feeling of sadness and despair descends over me, an unforgiving and impenetrable fog, as I remember that my calendar is just full of chemo dates and a reminder for my colonoscopy. I wonder how many iterations of iOS I’ll see before I die. I hope by the time I pop off we won’t have iPhones and our grandchildren will mock those clunky primitive bricks.
Since my diagnosis, these bouts of depression are not chronic, they are fleeting, more often than not tied to things I am doing, things that I see, reminders of my past life. When they do come, I have an overwhelming feeling that everything is tainted.
I have told myself repeatedly that I need to live for the moment, in the moment. Whether I live for another 5, 10, or 30 years, I don’t want to spend the rest of my life worrying about cancer, about recurrence, about dying. The rational part of me knows that this is good advice. I understand the need to cherish the moment, to celebrate the rising of the sun, the twinkle in my son’s eyes, the wonderful good will and good cheer that I see in so many people around me every day.
Sometimes this happens and I can run with that feeling, but more often than not there is an unwelcome equilibrium, a Newtonian state of equal and opposite reactions, where darkness always follows light. Sitting in Costa after my run, enjoying a bit of a generic jazz, waiting for my iced Americano, and I am overwhelmed with happiness. Or at an air show, watching the boys charge around on the grass with their polystyrene planes, feeling the sun on my face for the first time in weeks. Or sitting in bed with Marketa, with our ginger tea and our laptops, a blissful end to a blissful day.
The trouble is that it is precisely these good moments that tend to spawn the dark thoughts. A friend of mine, who also has colon cancer and is one day ahead of me on her chemo cycles, described it like this:
Ironically, it is in my best moments that I sometimes experience my darkest fears. I think it is because in my best moments I profoundly feel how much I love my life and how much I have to lose.
This is it exactly: an anticipatory feeling of loss. Sometimes, especially when things are good, I just can not escape the feeling that everything is tainted. That this happiness is short-lived, an embalmer’s sheen on a corpse, a brief blast of sunshine before the clouds set in. And the moment is ruined. I ruin it. I allow these feelings — and perhaps even the masochist in me brings them on deliberately. If they don’t surface automatically, I dig deep until I find them.
I don’t want to live like this. Sometimes, it is not the dying, but the living with cancer that keeps me awake at night. Living a tainted life, where enjoyment is always sullied.
Now I have my chemotherapy to focus on and I am galvanized by my treatment. Like an alcoholic, I focus on getting through each day, counting down the chemo sessions like a prisoner scrawling on the walls. But there will come a time hopefully, after my chemo is done, that I will be in remission.
It is this time that I fear most. Not the being ill, but the being well. Set adrift into the vast uncharted waters of remission, with all of its hope and happiness and opportunity, but yet with all of its dangers, its circling sharks, its monsters lurking in the deep. The cancer might be gone at some point, but I will always know my statistical chances of it coming back. I don’t know yet how I will live like this, with all this hanging over me. I hope I can learn to manage it, that I can be taught some trick where changing my mood will be as simple as choosing a new Instagram filter. Setting a new default: from sepia to blistering sunshine.
Even though they might have had world-class surgery, cutting-edge chemotherapy, and a rigorous monitoring regime, ask some people how they beat cancer and they’ll tell you: it was the green tea, the kale juice, the turmeric enema twice daily.
It’s impossible to have cancer and not come across the anti-cancer diets, the nutritional experts, and the supplement peddlers who start spamming you the minute you drop the “C” word on Twitter. The attention to diet, though, is understandable. Not only is there some good evidence that it can make a difference with people’s prognoses, in a land of rogue and unaccountable forces, it is a variable we can control.
After being diagnosed, I became much more interested in diet. It was a bit bloody late for cancer prevention, but I was interested in what I might be able to do to reduce my risk of recurrence in the future.
I’ve never been brilliant on healthy eating, but in the last 18 months, before my diagnosis, I was a lot more careful about what I put into my body. I cut out much of the junk, lost lots of weight, and started to better understand food, in the sense of actually knowing what a carbohydrate was.
So mostly, apart from the new challenge of my ileostomy, I’m trying to continue my eating habits from before my diagnosis. But I’m also trying to lower my carbs even further and incorporating a few more specific “anti-cancer foods” into my diet. So: plenty of turmeric, Manuka honey, dark chocolate, and my daily favorite, the green smoothie.
I came across the green smoothie as a good way of getting fruits and vegetables down, with the limitations of the shit bag. So every day I’ve started blending spinach or broccoli, a banana, blueberries or raspberries, a bit of honey, water, and a dash of protein powder. The result is decent enough and I feel that I’m getting my vitamins.
Nutrition and cancer is a divisive topic. Wading into the debate is a bit like having a discussion about whether God exists: people tend to hold quite intransigent views. You’re either a believer or you’re not. Drilling into the details, it all gets pretty sectarian, which nutrients or proteins work, whether antioxidant A can counteract the good work of antioxidant B.
While there are plenty of snake-oil peddlers selling dubious supplements, the vast majority of anti-cancer diets seem eminently sensible, just offering sensible healthy-eating advice, cancer or no cancer: less carbs, more lean protein, less red meat, fewer big sugary cakes, more wholegrains, more fruits and veg.
You do hear a lot, though, about the people who “cured” their cancer with diet. (I have had a few people, since I was diagnosed, try to sell me their chosen lifestyle. Always under the cover of concern, but with that underlying and unwelcome implication of, “well, if you’d followed my rules in the first place, you wouldn’t be where you are now.”) The problem with some of the I-cured-myself-with-green-smoothies crowd is that if you really look into their claims, they are often a bit murkier than they first seem.
Classic case: colon cancer survivor has surgery to take out tumor and diseased nodes and refuses chemotherapy and starts eating snails and lima beans. Ten years later he is cancer free and has a website, beansandsnails.com, selling his wonder diet and his story, which of course conveniently glosses over his life-saving surgery. Of course, it’s possible that the snails and beans did cure him. But it’s also possible that they didn’t. His survival proves nothing. Depending on the stage of his cancer, anyone could decline chemotherapy and have some chance of being cancer free. I could have refused chemotherapy after surgery, live on a diet of Tizer and Aero Bubbles and remain disease free. But of course that wouldn’t be proof that those things had saved me. So I’m wary when people tell me about their friends who beat cancer by just following a macrobiotic diet, as invariably that wasn’t “just” what they did, and even if that was all they did (which proves nothing anyway), their assessment of what made them better is colored by the understandable need to think that they are the masters of their own cure.
That doesn’t mean for a minute I’m against any anti-cancer diet stuff, but I would like to do it in conjunction with traditional treatments and have little time for fundamentalists of any stripe. I want to throw everything at this fucking cancer and feel I don’t have much to lose. So if acupuncture helps me in some way, bring it on. By following a stricter diet, I’m being kind to my body anyway and if the turmeric, dark chocolate, and kale doesn’t help prevent a recurrence, then what have I lost? Nothing. I quite like turmeric anyway and no one ever killed themselves from too much spinach.
There is a problem though. This is what my cancer diet should look like.
And this is what it actually looks like.
The big old elephant in the room that is squashing my virtuous cancer-diet ambitions: Chemotherapy.
A friend, who has gone through several bouts of chemo and is an advocate of anti-cancer foods, warned me that chemo is not a good time to diet. And she’s right. During my on-weeks on chemo, all bets are off and just getting any food down is a triumph. A few days after the chemo pump is out, my appetite tends to dwindle a little bit. I become more fickle about food, like a fussy eight-year-old. I can have a love affair with Tabasco one minute and then despise its tight-ass-little-bottle the next.
But in a couple of days, my appetite returns with a vengeance and I just want to eat. Food becomes less of a passion, but an obsession, an unhealthy fetish — and my taste for bad, spicy, unhealthy, fast food just spirals. Sometimes the only thing I want is a Whopper, or a big bag of chips and dip. I go to sleep thinking about food. I check out menus online of restaurants I want to visit. I could do Man Vs. Food in a heartbeat. I could eat that unfeasibly spicy basket of ribs in under 5 minutes against a backdrop of cheering redknecks. I would eat Tommy if he was wrapped inside a burrito and topped with sour cream.
It isn’t just a taste thing. I need to consume more calories as I absorb less with the ileostomy. So, unlike before, I can eat that cheeseburger without me worrying too much about the effects on my withered cancerous thighs. And because I’m enduring the chemo, I tell myself that I can have a little treat now and again. Just a little hamburger.
Except those little treats have become a little too routine and I’m worried about being found dead on the toilet with a half-consumed Elvis burger on the toilet-roll holder. The London doner-kebabs-with chilli-sauce-my-friend are just too good and I can’t even lessen the blow by adding salad. Just chilli sauce, mate, thanks. No problem, my friend.
I have become a secret eater. The other day, on a shoe shopping trip with Marketa to the mall, I had to go to another floor to use the bathroom. Passing McDonald’s I thought, well, she’ll want more time in the shop, what harm could a little burger do? Or indeed a little Bacon Double Cheeseburger. I sat and ate it furtively next to the children’s play area, strategically sat behind a plant should my wife come and look for me.
And while out shopping with my mum the other day to buy a new salad bowl, she admirably held her tongue after I bought a “mega burrito” at the tram stop “for my dinner.” She mildly protested, but I played the cancer card, and she kept quiet. I felt guilty as the man wrapped the giant elephant’s leg of a burrito in foil and, ashamed, I tucked it in the bottom of Tommy’s push-chair. Later, I ate the burrito in bed, washed down with orange Fanta.
This state of play is not sustainable. The American Cancer Society has advised patients against eating burritos in bed. I feel conflicted every time I eat something bad. I visualize the cancer cells partying and breeding like rabbits, slavering their naked bodies in crushed Doritos and cheesy dip. I shouldn’t be so good to them.
So this week, I have been better about reining myself in. Chemo patients often put weight on and after losing a few kilos post op I have started to gain it back. That’s good, as I don’t want to look like Michael Stipe or Tom Hanks in Philadelphia, but I do need to be a bit careful. More green smoothies, fewer Elvis burgers. That is my mantra.
A number of people have asked me this and it is indeed quite hard to describe. I can only describe my own chemo combination, FOLFOX6. There are many different types and it affects people in hugely different ways. Given that I have only had two doses out of 12, I am an absolute rookie, a chemo newbie. So these are just my early impressions.
I arrive on Day 1. They stick a canula (needle plus tube) into my power port, which leads into my heart. Painless, but still something nice to get over with. Then they take blood from the port to see if all my counts are normal. If they’re all good, they flush it out with various things, which is again painless yet I find it unnerving, I suppose because it is so close to my heart. This time around, the pump didn’t work at first and started beeping in that anxious mild medical emergency way and I had to lie back down and the nurse fiddled around with the port and I start worrying that it had flipped under my skin and was going to implant itself deep into my heart and that was it, my time had come, and I had only just ordered my EasyJet Plus card …
But then, the reassuring Ivor The Engine rhythm of the pump starts and everything is working again and I don’t feel a thing. The panic passes. The child won’t be orphaned and the budget airline membership card will arrive in the post. In a few minutes, I’m relaxed again, the steroids start to kick in, and I settle down and eat a Waitrose Scotch Egg.
When Oxaliplatin, the nastier more brutish half of the FOLFOX combo, goes in, I don’t feel a thing: not sick, not anything really, just buzzing from the steroids and the oral infusion of Lucozade. Maybe I am really sensitive to the steroids, but they really seem to affect me. It is like being drunk without the blur. I want to call and chat to everyone. I suddenly think I’m really funny and charming. I think the cleaners are interested in my life story and tell the nurses some of the things I can see from the window. I find it hard to concentrate and move things around in the room and change the TV channel. I have conversations with people in my head. I text friends with wisecracks. I want to tell a member of the catering staff that I loved her for what she had done with the toasted ham and cheese sandwich.
At one point, after the Oxaliplatin was all done and I was having a nice big bag of IV glucose, I began to feel like I was coming up in a club. Like one of those inebriated nights in my 20s when the bass line starts kicking in, and you can feel the crowd, and you get those tingly-goose-bump-brain-freeze feelings in your head and you just want to go and give the nearest person a big hug. I texted my friend Will and he offered to send me some tunes.
After that initial first day of crazy chemo party, things slow down on Day 2. The steroids are milder now, just taken orally. They keep me awake, but not really buzzing. Wearing my mobile pump now, I am being infused with the second drug 5-FU and I slump into something more of a funk. There is a constant level of background nausea, but it is managed by the anti-sickness drugs and I feel like I still have an appetite for food. I have no way of knowing, but it seems milder than what many woman seem to experience with morning sickness.
With the ‘roids it was as if things were coursing through my veins, like electricity. My veins were on fire. But this new feeling, this new funk, is something different. It seems more like a process of slow and deathly osmosis, an insidious seepage of drugs that are slowly making me feel worse. It is like my body has got mold or damp, or is rotting from within.
The mobile pump is both a blessing and a curse. Of course, it is way preferable to being attached to a drip and I am completely mobile. But I am still walking around with a bum bag full of drugs being pumped into my heart. I do feel a bit vulnerable. I wouldn’t feel very handy in a fight or rescuing a dog from a burning barn. I might have to leave that to a small child if there was one nearby.
Forty-six hours later, Day 3, the bum bag pump is removed and I feel elated. The nice South African nurse with the ornate gold teeth does it and tells me about the Free State where he is from. Then I go to Oxford Street and buy some jeans as my old ones don’t fit and I’m sick of looking like a withered cancer patient. To celebrate, I put a few quid on the Derby and then lose it all. There is for a while, a feeling of freedom, a momentary respite, without that damn pump. I don’t have to worry about leaving it on a table and then walking away and feeling that horrible yank as I nearly pull the line out of the port. I don’t have to worry that security guards think I’ve got something hidden under my coat.
The next few days, post pump removal, are perhaps the strangest. I have a general sense of not feeling quite right, a bit off kilter. When its less intense, it is just like being run-down and worn-out. But when it is at its worst, it is like the feeling you might get coming down after a 3-month booze and heroin binge and then suddenly going cold turkey and being asked to give a presentation on grain harvests at a Monday morning meeting. A bit shaky to say the least. But mostly I just feel sluggish — most appropriately with the weather here — rained on, washed out, mildly depressed. I blame the ‘roids.
I go for a run in the rain, the endorphins cancel out the bad vibes, and I feel just that little bit better.
One of the most frustrating things about having cancer, apart from the whole possible early death thing, is the lack of control. While the wonders of medical science can certainly work their magic to get you well, much of what is happening at a molecular level in your body remains a mystery, even to the pros. I am supposed to feel empowered, to take ownership of my treatment, but mostly I just feel like a hapless bystander. The beast will wreak what havoc it may and the best I can do is to just accept it, stiff upper lip, yes cancer, thank you, sir, yes take anything you want. You are not in the lap of the gods, but rather you are wedged inside their sweaty ass crack.
This is no way of living though and if I really did think like this all the time, I might have to contrive some kind of Breaking Bad scenario for myself. So given this dismal state of utter vulnerability and futility at the mercy of this bastard disease, I quickly realized that I needed something empowering, that I wasn’t content to be a mere spectator to the pillaging of my body. I need to believe that there is something I can do — not something the doctors can do or the drugs can do — to improve my chances and move the prognostic needle. Some people swear by the green tea, the turmeric, the juice diets, the power of prayer. For me, it’s exercise.
I have always been a gym-goer, but in that slightly-overweight-do-45-minutes-on-the-bike-and-then-reward-myself-with-Pad Thai kinda way. The gym didn’t make me particularly lean or even that healthy, but it did ward off the potential of obesity or bad health. (Er, until the whole cancer thing that is.)
But in the last few years, particularly the last year, I have become a lot more serious about running. I lost a good deal of weight and I managed to overcome my shin splints to get out regularly on the road, 4 or 5 times a week. I’ve done half-marathon distance and plenty of fast-ish (for me) 10 Ks. For me, running has been a revelation. It had always been something I had done from my cross-country days at school, but then my twenties and a roll of fat got in the way.
A lot of writing about running is remarkably dull, because it is hard to encapsulate just how good you feel after a run with mere adjectives. And like listening to people’s dreams, listening to people describe their own happiness in a variety of different ways, makes you want to thrust an icepick into their eye.
I have been that annoyingly smug happy runner. Buzzing after a long 20 K on a Saturday morning, dripping with sweat, warming up from the cold with a take-out coffee, watching my boy charge around the living room, life was just wonderfully wonderfully good. And right then, I wanted to share that moment with whoever was around me, which was only ever my wife. So I would tell her how great I felt, how I really felt strong out there in the 15th kilometer, and it was so different to the run I did 13 days ago, remember I told her about that one, when I went a little bit too fast just out of the park and had to slow a bit coming past the bus station.
'That's nice,' she'd say.
‘But you remember the one I told you about, right, nearly two weeks ago?’
‘Can you put your clothes straight in the washing machine because I’m putting a load on?’
I don’t begrudge her her response. In fact, her reaction to my endorphin-charged enthusiasm is fairly representative of most people’s responses to other people talking about running. It’s probably best to just do it quietly, stay mostly silent (unless with fellow runners), and not become a bore. So, in short: running is important to me. It makes me feel really good.
It was something that I was worried about after my operation. Would I still be able to run with 30 cm of my colon and a slice of my bladder missing? How long would it take me to get my fitness and energy levels back? Would I still be able to run during chemo?
There is good reason for me to keep exercising right now. There is plenty of evidence to suggest how beneficial exercise can be during chemotherapy, in terms of reducing fatigue and getting patients through the whole program. More importantly for me, there have also been a number of very positive studies about the benefits of exercise on colon cancer recurrence rates. In one study, participants who exercised more improved their recurrence chances by around 50 percent. Of course those are just stats, and they come with all the usual caveats about any medical research, but they’re impressive nonetheless. I choose to believe them, just like some cancer patients believe in the power of Senegalese seaweed. Exercise has become my talisman, my lucky charm.
As my oncologist — who is very keen for me to exercise through treatment — said, while the evidence about exercise and cancer recurrence certainly isn’t categorical, when it looks like a dog and walks like a dog it probably is a dog. For me, it’s a no brainer. Even if it doesn’t improve my chances and I do pop off a bit earlier than I would like, at least I’ll be doing something I love. And at least I can keep boring my wife on a Saturday morning with a long discussion of how I beat my PB with a slight tactical shift in the final third.
Running after the operation was hard at first, with the stitches from my stoma pulling and the poo-bag flopping around my middle. I had started with just regular 5 K walks and then, one momentous day, moved up to a slow jog. I still remember that first time I ran, crawling along the Prague streets, at one point mocked by teenagers for my feeble pace, but I have never ever felt more proud of myself. Tears were literally streaming down my face as I ran, this indescribable torrent of emotion, better than any personal best that I was most proud of. I was a sub-3 hour marathon. My rivals were toast. The ultimate runner’s high.
The first run on chemo went well. The stoma stitches were out and, mechanically in the colon region, I was feeling much more normal again. My bag didn’t cause any issues and I didn’t have to sneak into the toilets of a vegetarian restaurant to empty (as I did on a previous run). My body was starting to feel like my body again. Whenever I have been out again since, I have basked in this feeling of bliss. The euphoria was about much more than the physical achievement of running after surgery: I was reclaiming my old life before cancer. For 40 minutes — 40 wonderful minutes — I got my old world back.
Negative feelings have a habit of sneaking up on me these days. The sun will be shining, I’m feeling relatively good, walking to the shop, and then I’ll see an old man on the street and that will make me sad. Sad because, for that moment, I don’t think I’ll ever make it that far, that I’ll have the chance to grow old and potter about and carry a stripy shopping bag on my trip to the post office.
I don’t feel that way when I’m running. The negativity is kept at bay and I would power past the old man, leave him for dust. As I make my way up the hill in the drizzle, I feel that same rush of adrenaline, a feeling so overpowering that I am 100 percent confident that I can beat this thing. Or run an ice marathon maybe! In swim wear! I even fist-pumped once when I got home and sort of shouted, ‘Yes!’ I don’t think anyone heard me, though, as I was in the bathroom and did it quite quietly.
Because when I’m running, I’m not the guy crying on the floor in puddles of shit, nor the squeamish guy, nor the cancer patient snapping at his wife for an imagined infraction, nor the guy who shouts at his 22-month-old son for no reason other than that he is pissed off that he is ill, but I’m the dude who beats cancer with running, who gets kitted up and braves the cold weather to run run run, body bent into the wind and rain, never ever giving up. That’s the guy I want to be.
They are stealthy, these reminders of my past life. Little monuments of memory that stop me in my tracks. They are not the things I would expect, the grand moments of family life: birthdays, celebrations, anniversaries. They are not even the more day-to-day loveliness: Tommy splashing at bath time; saying goodnight to big elephant and little elephant.
The things that jolt me to remember my old life, a life before cancer, are impossibly mundane, seemingly insignificant. The WeightWatchers app on my phone; a set of placemats; a piece of paper detailing how to fix my WiFi printer; an ugly hole I made hammering in a nail. All of these things have now assumed a grand meaning, like relics, the lint from the sleeve of an old saint.
Sometimes the memories are better formed, more than just visual cues. The policeman, stamping his feet from the cold, who I always nodded to on my long runs that took me past the Czech parliament. Listening to Jake Bugg on the Metro, sleepy on my way to a morning shift at work. I can take one look at the calendar we bought at the beginning of the year to help us better manage our household and childcare duties and it leaves me almost clutching for breath. Just seeing “FS” or “MT” or “MM” written on the day-planner, the secret and cherished language of our family life, can bring floods of tears.
I am, though, guilty of a degree of selective memory. Living in a world of illness, the past suddenly looks very different. The sky was always blue. I forget the screaming babies and remember only the smiles; the walks in the park in blistering sunlight, but not the drudgery of doing the dishes.
But of course that world that I remember isn’t real, it is a trick of memory, a mere simulacrum. With hindsight, I have ascribed beauty and meaning to things that didn’t exist. I was actually in a bad mood half the time when I was listening to Jake Bugg; that policeman never acknowledged my nod and my legs were always hurting just coming over the hump of my long run. I have conveniently forgotten that Life Before Cancer was the usual fare of frustrations and petty annoyances with life, people, work.
With cancer — or I suppose any imminent threat to your own mortality — it is hard not to assume some irritating sage-like qualities, as if your thoroughly trivial (in the grand scheme of things) brush with death has put you on a plane of enlightenment higher than any of the other 7 billion humans. There is a tendency to act like one of those tiresome travelers who tell you how you can’t possibly appreciate life until you have whispered to the wind at a reiki retreat atop the Andes, that you should celebrate the beauty of the moment, breathe it all in, deep down into your lungs. I have indeed caught myself a couple of times, post-diagnosis, telling people to chill out, to not get bogged down by life’s trivialities, but then found myself thinking if anyone with cancer ever told me such a thing I would have nodded and smiled and made some platitude but inside I would have mocked them for their utterly predictable and hackneyed response to life. They probably deserve cancer, thinking like that, the uncharitable me might have thought.
So, on reflection, those visual cues, those reminders of my past life, can be jolting and set me down a path of wistful and self-indulgent nostalgiazing. But what I really miss, on reflection, about the mundanity of my old life isn’t the beauty encoded within life’s little things, or as my friend amusingly put it “profound insights about the nature of life and mortality” as I allow a butterfly to land on my thumb. What I’m really looking forward to, when all of this cancer shit is done with, is to worry again about the things that aren’t worth worrying about. The work stuff, the ego stuff, the imagined transgressions against me, the shop assistant who mocked me with her tone. The stuff that matters.
It was an ominous sign I shouldn’t have ignored. When I got to the hospital for my colon resection in April, the first person I saw was a stoma nurse. I lay down on the bed and she measured me up for either a colostomy or an ileostomy. (The colostomy bag comes out of the large intestine; the ileostomy comes from the small.) That was funny, I thought, as she was drawing big dots on me with a permanent marker, they hadn’t said anything about a bag. Or maybe they had and maybe I just forgot. I hoped they weren’t going to sew my asshole shut too.
‘About 5 percent of patients will need them,’ the nurse said, ‘it’s just a precaution, darling, don’t worry.’ I wasn’t particularly worried actually. The bag wasn’t going to kill me — if it helped get me better it was the least of my worries. For now, they were just black dots, covered with a bit of cling film. Then, in those few horrible pre-op days, I was more worried about the possibility of peritoneal metastasis (a question mark on a scan), which would drastically worsen my prognosis. So of all things I was worried about now, I could deal with the specter of a shit bag.
When I came around groggily in intensive care after the operation I had a quick feel around downstairs — a sort of roll call for my organs. Not that I could distinguish much with all the dressings and drains and the numbness and I was so high anyway I’m not sure if I’d be able to distinguish my groin from my armpit, but there was a new addition to the unit: a bag attached to my abdomen on the right-hand side.
The doctor explained that I had an ileostomy and I groggily said something — an attempt at a stiff upper lip as if I was reclining on a bed in the English Patient in a bomb-shattered villa — ‘very well, very well, yes no pain at all, whatever needs to be done, doctor.’ The surgeon later explained that the bag was only for six months, to let my colon heal. They would reverse it after chemo and I would be crapping again how the Lord intended.
Back on the ward, still in a twilight zone, comfortable and high as a kite from the epidural, not very much came from the stoma (the looped stub of small intestine that protrudes from my skin and from which the poo empties into the bag.) I will spare you the picture of my actual stub. I threatened to show it to my wife and she said she would leave me if I did, cancer or no cancer. (If you’re intrigued, there are plenty of pictures on the Internet. www.myhotstomapics.com is particularly good.)
At first, the emptying was done by the nurses, but after watching them doing it enough, I finally managed to sit down on the toilet like one of those emasculated males whose wives insist on them peeing sitting down, and emptied it myself. I wiped my new plastic anus and then folded the little pouch shut — no more unhygienic than going the normal way really.
The next big step was changing the bag, something usually done every two or three days. The stoma nurse, who from the beginning has been quite lovely, showed me how one morning. I stood naked in the hospital bathroom and she showed me how to remove the bag with some spray adhesive remover. The bag peeled off and I saw the stump for the first time, red and bold, like the tip of an angry and underused penis, or a recoiled sea anemone under attack. The nurse showed me how to wipe it with a tissue and then clean around it, carefully carefully over the stitches. I could feel myself physically shaking, unsettled more by how it looked and the very idea of this thing poking out that should have remained tucked up inside my body than how it physically felt. As I quickly discovered, there are no nerve endings in the stoma, so when I touched it I couldn’t feel a thing.
The nurse showed me how to dry the skin around the stoma and then fold over the new bag. When it was on and affixed I felt a minor sense of accomplishment and, still shaking, caught a glimpse of myself in the mirror: gaunt, heavy-eyed, standing naked with a distended belly, my buttocks sagging like an old man. The nurse said I had done brilliantly and I felt about 80.
I quickly got in the routine of living with the stoma. I can’t eat raw vegetables or salads and salty carbohydrates like crisps are ideal, so not all bad then. A diet of Doritos and Monster Munch could be worse. I have managed to run with it, by pulling up my boxer shorts grandfather-style to prevent it from moving around, and have had a night out in London with friends wearing a regular tight-ish shirt, without the fear that everyone could see that I was packing a bag of shite. It’s the little things, but they really do matter.
There was one particularly bad moment, though. Since my diagnosis, I have thrived on adrenaline, a good deal of gallows humor, and while I certainly cried a lot with Marketa in the first few weeks and done all the why-mes and self pity blah blah blah, I don’t think I had hit really rock bottom. That moment came when I was in Cornwall staying with my Mum, not long after being discharged from hospital. I had been having problems with my stoma for a day or two. The pouch was coming away and not sticking to my body. I had had a few leaks when the bag got too full at night. I wasn’t sure if the hole in the pouch wasn’t cut right or whether it was because the skin was irritated, but I could feel it pulling and the bag was constantly coming away from my skin. You don’t feel very confident popping out to the shops when you’re worried you’re going to leave a trail of shit behind you.
So, when my mother went out, I set about changing it. I set up all my cloths, sprays to loosen the bag’s adhesive. I prepared my razor to shave that part of my stomach and opened a pot of cream to treat the sore part. At first everything went according to plan and I took off the bag to reveal the swollen red lump of intestine. I cleaned everything as the stoma nurse had shown me and then, just when I was about to place a new bag on, the bastard became active, pumping out liquid at a furious rate, first into the sink then down onto the floor and the bath mat. I grabbed some cloths and cleaned up the mess but it just kept pumping out, liquid shit dripping down onto my scar dressings and onto my legs. Every time I got myself clean, and stood prepared to attach the bag, the stoma began erupting again, despite me actually shouting at it and even imploring God to make it stop.
Then I really lost it and started sobbing, hyperventilating, which just made the stoma weep more brown liquid onto the floor, and then I bent down to pick up a towel, and that movement caused the biggest eruption of all, and with liquid shit everywhere I crumpled into a ball on the floor, crying uncontrollably, producing sounds from deep within which I never thought were possible.
It was a low. But the good thing about having a mini-meltdown is there only one way to go from there. After lying on the floor for a few minutes and looking up at the blue, cloudless sky through the skylight, and after the various liquid flows had begun to subside, I realized that I was a 36-year-old man lying on my mother’s bathroom floor in the foetal position surrounded by little puddles of shit. It was probably time to get up. So I did, and thankfully my stoma lava flow ceased, with just the odd spurt now and then, and I managed to dry my skin and get the new bag on. It’s funny how a good cry and a fresh bag can make the day look a hell of a lot brighter.
There are plenty of forums for fellow ostomites, some of them very helpful in terms of care and diet. I have learned, for example, just how relieving it is to clean my stoma in the shower and then do my bag change after that, all clean and relaxed. On some of the forums, people become almost affectionate towards their stomas. They give them names like Rod or Sylvia. (Do they sit next to their partners in bed and say, ‘I think she looks like a Sylvia, or maybe Madge?’ I am glad I am not in bed with those people.) But I shouldn’t judge as there are many people who have theirs for life and it’s probably best at least to come to some kind of mutual acceptance and understanding. You’d have to really.
I don’t accept mine, though. I hate it and I can’t wait to be rid of it. It is a constant reminder that I am sick. If I named it I would call it “cancer” or “cockface,” and if it were my child I would neglect it.
After a mix-up with the room (they had no record of my booking), everything went smoothly and in no time I was sitting in a chair being infused with anti-nausea drugs and magnesium. I was a bit worried about them accessing the portacath (pictured above next to nipple), a port under my skin just next to my left collarbone, which they implanted a few weeks ago. It’s where they’ll give me all of the IV drugs, but they can also take blood from it and put in contrast for future scans. So quite handy really, and means fewer needles being stuck into my arms and hands. I was a bit squeamish about them accessing it for the first time given its location so close to my heart, but all was good. It was painless and soon enough I was comfortably reclined and looking out onto Marylebone Road, watching the traffic trickle by.
Each person has a pod, a chair surrounded by various machines and touch screens. When reclined, they remind me of the pods in sci-films (just minus a body-shaped perspex lid really) where people are cryogenically frozen and then emerge drowsy, but fortified, to fight future apocalyptic wars. I had always imagined a chemo ward to be a sad place, with a crypt-like reverence, full of desperately ill looking half-humans, so beaten down by their cancers and the chemo-poison that they could not even raise their bandana-tied heads, let alone muster a smile. But, this day, at least, it had the feel of a sort of cheerful up-market cosmetics salon, where well-to-do ladies came for procedures on nameless parts of their bodies and the rest of us — staff included — were simply too polite to ask. There was a lot of laughter and a lot of good cheer.
My chemo nurse was particularly warm and helpful, going through all the drugs and their potential side effects and which drugs we could use to control the side effects if they appeared. When he left and it is quiet, I sit back in my chair and watch the traffic again and listen to the inhalations and exhalations of the pump and the hushed sounds of other people’s conversations. From the window (below), I watch school girls at the end of their day, huddling together on the corner, eating crisps and mucking around, and I feel a pang of nostalgia for something or other, although I’m not quite sure what.
After a few preparation drugs and various flushes, they bring out the first big gun: oxaliplatin. When it goes in, I don’t feel a thing except I’m a little wired from the steroids — although that might be the pot of strong coffee I just had. I am becoming to feel quite relaxed, guilty even, in too much comfort as I watch London go by, drink bottled mineral water, and sip organic-roast coffee. It is hardly Solzhenitsyn’s Cancer Ward.
Then the steroids really kick in and I’m chattering away to the nurses and gnashing my teeth like a crack fiend, or that annoying coked-up dude at a party, telling them about that time that I went to Regents Park but wasn’t sure of the best way to get in and it’s funny because it was raining but then it stopped and did she live far from here and did she know if they sold Lucozade in Waitrose and was that building next door connected to the London Clinic because in the end I think you can get through to the park just past the music academy so that was all good and it should be still open right, the Waitrose? Right? Lucozade? Right? It looks like you’re quite sensitive to the steroids, one of the nurses said, and I nodded and gnashed like a mad man.
After the infusion of the first big gun ends, I now have a pump with the second drug, 5-FU, which sits inside a bum bag. I am more mobile now, not attached to a drip, and can potter around the room or go out.
After dinner, I go for a walk down Marylebone High Street. It is strange to walk out, with my pump hidden under my coat, my chemo secret safe like a stealthy terrorist. It isn’t particularly warm but there are people outside the pubs, after-work drinkers. Sometimes the presence of normal life and the bustle of the street can be invigorating. It is one of the reasons I am happy to have my treatment in central London. Sometimes it lulls me into a sense that I am not ill, that I am part of this tapestry of everyday life. But at other times, it makes me feel quite the opposite: a reminder of what has happened, what I am doing, what I am facing. At those times, I do not feel a part of this life that exists around me. I am not with the guys bantering outside the pub sinking a few cold ones. I am not buying salmon fillets and wine to take home for a quiet evening in with Marketa.
This struggle with the normality of other people’s lives has been a constant since diagnosis. I often have a feeling of looking at things from afar, as if I was watching one of those time-lapse cityscapes that have been sped up to show blurry streams of people and traffic. A feeling that I am an observer and not a participant.
At my most negative, I would begrudge people their “normal” lives (selfishly oblivious of course to the many problems many of them might have, the illnesses, the breakups, the lost children). I hated the couple clinking glasses in the pub, the overweight guy behind the counter in the grocery store who should have guessed I had cancer and treated me with more compassion when I fumbled with my change. I resented families I saw through the windows of Nando’s, with piri-piri sauce on their sticky smug cancer-free fingers. I was annoyed by the frantic mothers pushing children and hated the complacency of their fucking Bugaboo drinks holders and floral parasols. This resentment was not just limited to people, but more amusingly I even extended it to infrastructure: I resented the buses, the taxis, the buildings — the bastards, just standing there, all arrogant and stoic in their, normal-people holding and transporting roles! It all didn’t make much sense.
Today, maybe because of the mild high, the feeling of otherworldiness from the drugs, I didn’t feel angry with the world. After being in the hospital all day, I lapped it all in, was invigorated rather than depressed by the carry-on of normal life. I walked down towards Waitrose, and with a breath of cold air, felt just the slightest hint of neuropathy, the tingling and numbness in my hands which is a common side effect of FOLFOX (the combo of drugs I’m having). But it was very mild; it might just be from the cold. I bought Lucozade (because that’s what ill people drink) in Waitrose and then walked slowly back to the clinic to settle in for the night.