Category: preparation

Yesterday the deck of cards that is our life was completely reshuffled. After we heard the news about the biopsy showing Kamalashila has a different cancer than the specialists thought previously, we had a weekend of more fluids to help lower the calcium. KS became more weak and unwell and could not take more fluids. It was obvious something needed to happen to address the hypercalcemia. On Monday morning his phone rang and KS was offered an appointment with a haematologist. It turns out he has lymphoma, a blood cancer. He was admitted to hospital that morning and told he will likely stay there for two weeks. He will have tests and, if his body permits it, the first of a round of chemo. The doctor spoke of a good chance of remission.

As I am sitting here, glued to my chair, in some sort of daze, my body is demanding attention. I sense a vigorously beating heart, an internal shaking. Lots of tightness wanting to be loose. Another bat of an eyelid. Another swing of the pendulum. Everything is again wide open. Perhaps there may be a few plans for the future after all.
For now, words fail.

The title of this post is a phrase that regularly turns up on my Duolingo Italian refresher course. It means: I don’t know whether to laugh or cry. It came up time and again in my meditation earlier today. Piangere o ridere. Ridere o piangere. Just now I was crying. And just before that I was smiling.

Ten minutes before Kamalashila’s class starts, the medical team arrives to connect a new bag of fluids. He has phoned yesterday to tell them not to come at that time, but the message has not come through. They won’t have time to take the bloods, but in no time we work as a team, have the bag on a clothes hanger, taped to the top of a bamboo stick, the stick leaning against the wall next to his meditation seat. And all is set. Only he texts me a few minutes later that he needs me to pass him the tape, so he can tape the tube running from the bag to the canula to his hand. All set for the class then now. I feel stress coursing through my body.

The calcium is still going up, and so is the number of bags of fluids, and the pile of used plastic gear in our kitchen bin. I have learnt to disconnect the tube when the bag is empty. The doctor tells me in the hallway, behind the closed door to the virtual vihara, that the plan is to go onto two litres of fluids from now. They will take the bloods when the second bag arrives today. The fluid needs to go through slowly in order not to put too much strain on the heart.

Yesterday a friend who is a potter came to show her designs for the cremation urns. They look amazing. We don’t know whether she should rush making them or take it easy. The calcium is not behaving well, but yesterday a phone call came from the oncology nurse. The results of the biopsy are in. It is not the cancer they thought it would be. More information to follow early next week. Someone messages me to say they are looking forward to seeing me later that day, potentially. Plans are by definition provisional in our lives at the moment. I stick a laughing emoji on. Then hesitate to replace it with a crying one.

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.

The river flows unceasingly. As do the little groupings of people along the Covid memorial wall, opposite of Westminster. Ribbons of buses crossing the bridge. I am leaning on a balustrade outside of St Thomas hospital and typing on my phone. Our lives seem to fluctuate with the calcium at the moment.

I am weary. I don’t like feeling weary. I feel I am falling short. Not enough energy to engage, pursue. I am trying to find the right course. A right course needs to be found in it all. KS has been back in hospital since Monday. I don’t know what the plan is. KS doesn’t know either. A plan may be forming among the team of specialists. We hope to find out more today. The calcium is still the culprit, but underlying that is the cancer tricking the body into releasing calcium into the blood. This cancer is a trickster. The oncologist called it ‘naughty’. It just doesn’t tolerate treatment. It is stubborn. It is persistent. Not unlike its owner. Which is perhaps where the comparison stops. It is veering towards the unsayable, the unacceptable and the unbearable. ‘I don’t recommend it’, I said to the downstairs neighbour. Humour with the tumour. Naughty. Juicy. Rich with fluids. Poor with taste.

KS is home from hospital. The calcium is low enough for him to be released. We are both very tired, in different ways. It is lovely and sunny outside. Crisp edges of buildings against a blue sky. Tree tops that are gently waving. If all goes well, nothing much will happen today. I will go down again to stroke the neighbours’ cat. I am wondering though: how much attention is enough? I am trying to take my cues from the cat, but so far it has been hard to read. So I am going on my own sense of enough. I do not have much to give, dear cat. So it will be coming, giving you some treats, checking your food and drink, followed by limited stroking and inevitable going. I do not have much mental space to properly meet this cat. Apologies.

My attention has been very much focused outside of myself for these past months. For good reasons. But in the long run this isn’t going to work. I have set a up a group of helpers on WhatsApp. And, after I did my first request on it yesterday, it looks as if it is working. People are amazing. I am still trying to find ways to replenish myself and somehow it seems I am the only one that can help with that. But like with the cat, I do not have much space to meet this properly. What I can do is go there with an open mind, with no plans and no preconceived limitations. Wish me luck.

KS was fainting again on Thursday morning. The doctor came and suggested KS should go into hospital for a few days for observation and tests. I cried. It was the wisest course of action, but really not what we wanted. We took a taxi to A&E and KS was checked in. A few hours of waiting in a cubicle and then there was a bed in a ward without windows. He had been there before for a few nights, in April. More bags of fluids, more blood tests, more scans. For him it means: noise, lots of impressions, all the discomfort that comes with not choosing what you surround yourself with and what you ingest. Lack of sleep. But at least he is monitored and hopefully the calcium will come down (it was still going up in spite of all the fluids) and a cause for the dizzy spells is found.

I speak to a friend and ask her how I come across. I do not really know. That is why I ask her to tell me. Tired, she says. In the meantime I have spotted a mouse. A few times. And I am going to say hello to the neighbours’ cat in a while, because they are away from home and need someone to check in with their cat. There seems to be some sort of message in there. But I cannot pick it up right now. I am certainly not dancing on any tables.* I have found for a while that often when I read a message, it doesn’t really seem to process. So that is where things are at the moment. Cat and mice. Fluids. Not knowing. No dancing. Taking breaths. One at a time.

* The Dutch expression is: When the cat is away the mice dance on the table.

Since Saturday KS has had three and a half litres of saline fluids inserted into his veins, plus an injection to take care of the hypercalcemia, and his bloods have been taken twice. He will have a scan soon. He is not feeling that great in many ways. In the meantime I have turned to domestic action. I am baking, washing, cleaning, cooking and tidying up. I am even ironing. I watched a few YouTube videos on how to iron a shirt. And then also one on how to clean an iron. What an improvement. These activities give me a sense of accomplishment and perhaps also a sense of being able to do something useful and practical for KS. Lots of boxes get ticked.

There is not much I can do for him in terms of how he feels. I can talk with him, listen, cuddle, do practical stuff for him. I can be good company. I can give him space, advice and encouragement. I can be around when the nurses visit. But I cannot take away his pain, exhaustion or overwhelm. And then, with this, I need to look after myself. I sense my agitation and open up to it. I touch in with despair and upset. I stay there for a while. Then I emerge again. And apart from turning towards household chores, I take walks, do some shopping, see a friend, read a book or visit a gallery. And various combinations of these components. We seem to be coping. But sometimes it all feels like quite a lot to deal with.