pieterh wrote on 04 May 2016 05:10

On Monday I got home from the hospital. It was nice, as hospitals go. My sisters and mother came to get me, and after hours of paper work and last minute urine tests, the doctor gave me my papers and told me I was free to leave. Without oxygen, I sat quietly during the taxi drive home and then got home.

As I sat down in my living room, surrounded by the material of my life, my children, my family, my cats, I cried. The overwhelming sense of joy was so intense that I almost started tripping. Then I found the oxygen, and things came back into focus.

The chemo, this first round, was miserable. I wanted to write a happy note about the lack of side effects, to cheer people up. Instead I spent most of Friday and Saturday vomiting, in one case projecting green-yellow vomit across several meters of my room. I think I'd eaten a couple of olives for supper. Hospital rooms and staff take this kind of thing in their stride. A few sweeps and it was all gone.

I'm not a good vomiter, and the doctors gave me increasing doses of different drugs to fight the nausea. Only when my oncologist said, "if you vomit again, we'll stick a drip back into you and start brain scans," did my body realize this had to stop. It's like an anti-placebo. The threat of not getting free, and worse, switched off all my nausea like flicking a switch.

Curious to see how it goes with the next round of chemo next week, now that I know the effect is at least partly psychological.

Vomit or not, I'm dying. I'm on palliative care, and the doctors did not switch off their slightly grim "we'll do what we can" manner. So different from their "oh, you'll be fine!" faces.

To be clear, I'm not resigned, hopeless, or fatalistic. I'm absolutely determined to beat this cancer, by sheer force of will, and blind hope in the miraculous. This is how I'm designed, like a unbreakable self-righting toy. Put me into any situation, no matter how impossible, and I will always find a way to make things work. Yet I know that I'm bullshitting myself in this case. "Always" only ever means, "so far, so good."

Status: awesome :)

I can feel the cancer growing in me, my breathing slowly getting shallower and less easier. It is like the atmosphere has lost its essence. I breath oxygen through a tube, one liter a minute, and live with this cable like in the old times, when computers could move as far as their wires. A portable saturation meter (thank you, Amazon, you've made my life so much easier over the years) tells me I'm at 96%.

Sometimes I take off the nose piece, and "go WiFi" for a few minutes, maybe half an hour. This lets me put my sons to bed, tell them stories. Gregor, the youngest, is so comfortable in my arms he falls asleep after two to three minutes, always.

Freeman listens to my stories with attention, as he has always done. Over the last years we told the stories of Bobolan the Magician, who built the largest magical university ever. It all started at the End of the World, when Bobolan had to find five precious stones to restart the Sun. That story took us a month to tell. Jack Vance, Terry Pratchett, forgive me for taking a few riffs from your songs.

My children seem to be doing well. They are calm and cheerful, focused on their daily rituals. School, computers, feeding the cats, helping in the house. It took a day or so for us to adjust after my absence and return.

There is no hiding that I'm sick: my medical bed with its motors and cables is in our large living room, the center of our home. When I cough, my kids hear it, they can follow my slow downwards curve.

Not that I'm getting weaker. Hospital left me weak and thin, 14 kilos lost, slow shuffling walk. Now I am quickly getting back in shape, up and down the stairs, WiFi. Being at home means I feed myself. Food has taste again!

And home, I have space for my friends and family as they visit. I hope the funerary procession of that Sunday ten days past is finished, when fifteen people visited me in my small room. Some I'd not seen for years, decades. Why, I wonder, would you come to see me sick, when we don't talk in real life? I get it though, the social rituals of saying goodbye. I notice that flexibility, being able to greet the not-yet-dead in much the same way as observing silence in presence of a body.

A friend came up from Paris with a bottle of wine, warm socks, chocolate drops she made in her restaurant. My daughter ate the chocolates. I put the socks on. We opened the wine. Wine and beer, I asked my doctor, before checking out. How much can I drink? He frowned… if you're not taking medication, then a glass or two can't do any harm.

She told her colleagues, "I'm taking a few days off work to say goodbye to a friend who's dying." A strange reason, perhaps, and yet spending a couple of days together, slowly talking about life, knowing this is the last time we'll see each other… it feels as natural as cooking a meal with friends.

I think "euthanasia" as a term has some problems. It's too easily hijacked by the "death panel" lunatic fringe who believe that pain and suffering is our destiny. Switch off your Internet and heating, you psychopaths, if that's what you really think. No, what they really mean is "I claim the authority over others."

Let's use the term "planned death," it is accurate. Planning our deaths. It may be a luxury for some, and for others, besides the point, yet for those like me who see the road ahead, I claim this to be an essential Human Right.

How else can this all work? My children don't want or need to see me rot and fall apart. They don't want me to go away again, disappear into that machine called "medicine." Talk about a lifelong trauma. I can offer my children a model of control, careful organization, order out of chaos. It's what I've always taught them. Chaos is the default: do not wait for others to fix it. That's your responsibility: organize your world, take control.

Not all doctors are willing to kill their patients. It is the first discussion I had with my new family doctor. "Are you on board with the whole killing me when it's the right time thing?" Sure, he said, your oncologist already asked me that before choosing me. Good man. We signed a contract and shook hands.

My oncologist. I have to say, a wonderful woman. I joked with my sisters, when the tall male head oncologist visited me in my room, that I was grateful to finally see a real doctor. My sister, a doctor, pretended shock and outrage. In truth, my oncologist took me under her wings and pulled every string necessary to get me home in the best of conditions.

A planned death is not a moment in time, like a car accident or a fatal stroke. It is a process. A social process that involves hundreds of people, each doing their part, grieving their loss, accepting their own mortality.

I'm proud and immensely grateful to be able to experience this, and share it with you.