pieterh wrote on 18 Aug 2016 10:08

There are no easy conversations when it comes to dying. Especially when it comes to a disease like cancer, which eats us up from the inside, a betrayal by our own cells. "Fight it," people still tell me. "Don't give up! We need you!" This notion that cancer is a fight… it's one I want to break down, and then rebuild, in this article. I've come to believe that death can be a positive social experience. Let me explain…

Let me start with this: one does not choose to fight, or give in to, a disease like cancer. Perhaps to any disease. In my body right now there is a holy war going on, and has been raging for years. My immune system has been doing its damned best to kill these rogue cells. And the rogue cells, unaware that they're destroying their own host, have been fighting back. It's no small fight. I've lost 15 kilograms in the last few months.

The odds are on the cancer, of course, which is why this family of diseases is a major killer. Our bodies have to keep winning, year after year. Any given cancer has to win only once, and it's Game Over. The only way to beat cancer, really, is to die from something else first.

So this is my first point. Everyone fights cancer, all our lives long. From birth, our immune systems are hunting down and killing rogue cells. I grew up in the African sun, pale skin burned dark. Do I have skin cancer? No, thank you very much, immune system! Much of my adult life I drank a bit too much, ate too much red meat, too few vegetables. Do I have bowel cancer? No, thank you again, you over-active beast of an immune system, you! Hugs.

And most of us can say the same thing, most of the time. We are all cancer survivors, until we're not.

Secondly I want to attack that notion that we can and should "fight", as a conscious effort. Then third, I'll try to explain some of the real fights that we the terminally sick do have.

So take this easy statement: "you must fight, Pieter. Don't let the cancer win!" It wraps up so many difficult emotions in a neat package. It fits into the "disease is mostly in the mind" 1970's era fantasy that still imagines meditation and positive thinking as the cure for rampaging gene mutations. And presumably cholera, malaria, and broken legs as well.

Worse is the implication of blame. When we die, did we not fight hard enough? If it takes me six months to die, am I doing a better job of "fighting my cancer" than someone who dies in six weeks? It goes beyond senseless into the cruel. We don't "lose the fight" against our cancers, any more than a cell phone loses its "fight" against battery exhaustion. The mutations will always win unless something beats them to it. It is a matter of when, not if.

That fist-pumping "you can beat it!" motif has more insidious effects. It drops responsibility like a ripening melon into the lap of the ill. It leaves the pep talker buoyed with their display of positivity and helpfulness. As a conversation with the dying, it is cheap and unintentionally nasty.

My neighbor, nice guy, every time we met over the last months, did the cheerleader thing. Finally I put on proper cancer face (shaved my head) and met him with my oxygen container, on the street outside our house. "I'm dying now, Hussein," I told him. "The treatment stopped working." He finally nodded, accepting it. Now finally we can talk about real things, like what will happen to my kids when I'm dead, and so on.

Clearing the table of the elephant poop of positivism, we see other creatures skulking about too. Worth mentioning:

• Diet positivism, from ketogenic to fresh fruit. Obviously, when you can, you should eat moderately and avoid junk foods, especially sugar. Yet a cancer patient is struggling with much more basic problems. When I have chemotherapy, I literally lose my appetite for days. Even getting a sweet pastry down my gullet can be a major victory. Thank heaven for drugs like Medrol (a glucocorticoid) that give me hunger again. From then, my body decides what it can stomach. Maybe it's buttermilk. Maybe it's chicken jalfrezi and chana masala. But heaven help you if you come to my bedside and propose that I should be eating more fruit.

• Alternative medicines and treatments, including marijuana, gene therapies, and so on. Apart from putting the responsibility for "trying hard enough to get better" onto the patient, it's poor advice. I assume you live, like me, in a city with a functioning medical system. With experienced oncologists who see hundreds, thousands of cases in their career. Who have access to databases of studies and data. With almost unlimited access to the necessary medicines. If you don't have these, then you are fairly doomed in any case. Can a single individual patient second-guess the medical machine? Is that really their duty?

Now I'll come to the real struggles of the dying. This isn't a full list, I've not done much field research. More of a sampler to show the point.

• Finishing the paperwork. By this, I mean cleaning up enough so that the survivors aren't punished. I've been lucky to have had time to do most of this. It's a huge job. I had hundreds of open projects and accounts. Each needs to be handed over to someone I can trust, shut down, or abandoned.

• Fighting off the wolves. You'd be shocked, yet I'm involved in arguments over money, and my humble yet non-zero estate. There are people who treat the dying as easy prey. I don't take it personally, instead I get my lawyers and notaries busy. I am grateful for portable oxygen and Uber, which has kept me mobile for the last weeks.

• Managing the symptoms. Cancer hurts. The right side of my chest aches, up to my shoulder and neck. I take opiates, two 12-hour Oxycodones, and then instant Oxonorm for moments when it's worse. With good timing I can get a night's sleep. If I mistime it I wake at 3am, from the pain. Yet I want to feel some pain, it's vital data.

• Finding food to eat. All my life I've been the one who shopped, cooked, served others. It makes me sad that I can't do this for my kids anymore. Yet it's pushed them to take over. My daughter does the shopping, and helps make food for me. I don't need to explain much, we know each other. I order an Indian takeaway. She prepares a thali-style plate, adds hot sauce, nukes it, brings it with a large glass of buttermilk.

• Staying happy. And, helping those around me to stay happy. It's far easier to be in a bad mood, tired, grumpy. People will excuse that. The chemo changes our personality, right? Well, perhaps, yet this is definitely within my control. I wrote in the Psychopath Code about emotional control. It takes effort, yet it repays itself many times.

• Staying fit and clean. If you've ever been bedridden, you'll know how hard it is to get up, and do things like wash your face. It's especially tough when you're getting chemo drugs that debilitate you. Yet you are only as strong as the work you do. I force myself to sit up, walk around, even to go outside if I can.

What's interesting to me is that in these struggles, other people are key. These aren't solitary conflicts. I've found that they bring my friends and family close to me. We're all involved in this slow process of dying. It may seem horrible, from some points of view. And yet, it is deeply satisfying in other ways. It has become an enriching thing, a collective work.

I'd much rather not die, yet if I'm going to (and it does seem inevitable now), this is how I'd want it to happen. Not fighting the cancer, with hope and positive thinking, rather by fighting the negativity of death, with small positive steps, and together, rather than alone.