Month: August 2024

The week so far: two visits from palliative care consultant, two visits from medical team, one visit from the GP, four friends at separate times, two bags of fluids, some test tubes of blood and a urine sample taken away, and two trips to the pharmacy. Kamalashila’s sojourn in hospital has shaken up the balance of his medications. In some ways it is back to square one. For instance: the newly prescribed anti-nausea tablets make him less nauseous but cause him to feel sedated. It is now removed from the battery of medications and another drug might be tried out instead. A new equilibrium needs to be found within all the different forces that are at play in his body. It is so peculiar how a body gets less private as soon as anything medical is going on. We talk extensively about the functions of the body. What works as it should, what doesn’t work quite so well. Let’s talk about something more interesting, we say. We are silent. He is very tired. Time is precious.
Late in the evening a mouse runs out of the old Victorian hearth. It is surprised to see me. I do a classical ‘eek’. We part. What remains is a memory of awareness, pink insides of ears, a lively face and two perceptive eyes. A bit later KS appears in the opening of the door, just giving me a wave, a bottle of sparkling water in his other hand. My heart contracts.
The next morning, as I take a walk in the park with a friend, my phone rings. The doctor phones and says KS’s calcium is high again. She is on her way with another bag of liquid. As the liquid slowly drips from the bag into his body, some tears roll over my cheeks. Straight into my blood, KS says.

“Be yourself”, I said to someone.
But he could not: he was no-one.

This is my rendering in English of a short Dutch poem by De Génestet (1829-1861). It was playing through my head just now. Someone told me yesterday to just be myself. I was wondering whether I was going too fast and told her she was slowing me down. In a good way. And that was her answer: just be yourself. This sounds infinitely simple. But it kind of gave me some consolation. It is hard during these times – and at all times – to know how to respond. To know what is most helpful to say or do. And in the end it just comes. Whatever that is. An impulse comes from the heart. An interaction with all the conditions emerges. The wish to be helpful sometimes comes in the way of acting. But the action that is born spontaneously is often the right one, or at least the one that was born, so is therefore there. Is myself. It is being myself. Whoever that is. Or could be. Or could not be.

I was thinking not much would happen during the weekend, but on Sunday early afternoon Kamalashila sent me a text he was coming home. He had started to feel much better on Friday morning and on Sunday the calcium was low enough for him to be sent home. In the early evening we sat together on the couch quietly enjoying the sunlight coming through the front room windows. Thus one week ended and another one started.

Unfortunately his nausea is back. And we are back into porridge territory. This needs to be prepared according to very specific instructions. I am doing my best, but as the porridge inspection arrives the result is declared too thin and I haven’t been using the right implement. It needs another five minutes of his dedicated work until it has reached perfection. It is now ‘fine’. I live and learn.

Kamalashila seems to be surprised he is tired. I am not. He has spent a week in hospital, preceded by a few days at home after having been in hospital for a couple of days. I am not surprised after all those broken – often humid – nights, procedures, noises, lots of changes, medication, injections, impressions, interactions. I am tired after this week just from going backwards and forwards, from trying to keep up with events, from anticipating what is needed, from processing new information. The week has started calmly and long may it continue. I shall enjoy every single minute, at least when I remember.

August has come and if the oncologist was/is right this could be or have been the last month of Kamalashila’s life. But he seems to be doing much better with the cancer than predicted, according to the specialists. It hasn’t spread as much as was expected. It has spread though. As it is finding its way into more tissues, it is producing more pain.

Yesterday was a tough day. KS received an injection that should stop too much calcium coursing through his blood. And also a biopsy was made, which may or may not lead to some treatment. As I was walking along the river and through parks with an old friend from the Netherlands, KS was asleep most of the day or being wheeled to procedures. My friend and I were picking the shady side of streets and spending time in galleries till visiting times at the hospital were starting. Sitting next to KS whilst he was sleeping, sometimes holding his hand, I felt the Summer in my body. Thunder rolled over the hospital. The blue folding curtains around his bed were hinting at blue skies. The bright lamps overhead were emulating the sun. It was humid. He was mostly so exhausted he could not stay awake. But he told me he was pleased I was near him. And I was happy to be there, but worry was visiting as well.