Category: preparation

KS is still breathing. Sometimes shallow and fast. Sometimes it sounds like he is sleeping deeply. And there are also moments where the out-breath seems to create bubbles in his chest and it is difficult to inhale. 

There is a diffuser in the room. I put some rose oil in and also frankincense. Both scents he has loved in the past. I hope it isn’t too much. I switch it off regularly and briefly air the room. In the midst of all of this, autumn has arrived and the air outside is chilly. The dispenser changes colour all the time. I think he likes this as he has two lamps like that in his room, the Virtual Vihara room that has stood empty for almost three weeks now. 

It was three weeks ago that we had to go to A&E, were sent back for an apparent false alarm and then had to phone the ambulance early Saturday morning. It has been a traumatic journey since then and I am hoping this stop at the hospice is going to be gentle and soft. But I have learnt that whatever I have been hoping prior to this time, isn’t what is manifesting here and now. I hadn’t expected to feel so awkward and helpless at times, that I would not know what to say, what to do, what the right action would be. But this is what is happening. I may not always get it right, but there is thankfully a lot of help around. I have sat with him, meditated and chanted the long Vajrasattva mantra. But frankly most of the time I hang around, read, talk to people. I think somehow I had expected KS’s dying process to be more in line with his life, his character. But as I am sitting in this hospice full of sounds, busyness, full of kind strangers helping all the way, his worn-out body in the bed sometimes feels quite unfamiliar. I continue eating, sleeping, talking and going for short walks. But his life is approaching its end. How unfathomable. All seems so inadequate. 

I am sitting next to Kamalashila in the hospice in Clapham. It is the oldest hospice in London. I am the one who is benefitting from the lush green outside his window, as KS is not really opening his eyes much now.

In the background intermittently some sort of machine that sounds like a siren. And closer by the air mattress pump that gently changes the distribution of his weight. And even closer: KS’s breathing, fairly fast and shallow. But easy. He hasn’t woken up since I arrived here a few hours ago. I have been going home in the evenings, taken a bath, drank some tea accompanied by tears and then off to bed with a book. My lifelong habit of regulating myself through reading is helping me hugely. I arrive here before our usual meditation hour. Although he hasn’t really been here long enough to create habits.

I sat with him this morning, listening to his breathing. I was sensing into the pain of the here and now, some bitterness about what is happening and how it is happening. I opened to the situation fully on the in-breath and let go on the out-breath. It helped. People who work here take their time to talk to me. That also helps. They are asking me how I am. Telling me they are here for me. I talk to them about how we arrived here. And it is an astonishing and lengthy story. I am and feel more supported on this part of the journey. I relax into it a bit and feel grateful. 

Today Kamalashila was taken to a hospice in Clapham. During the weekend it became clear he was living longer than expected initially. This was after his stay in the ICU and his kidneys no longer able to support his life. The ward at Guys is extremely busy. Everyone is doing their very best, but there is too much work needing to be done by a workforce that is too small. So yesterday I asked the palliative care team whether we could consider moving him to a hospice after all. They agreed it was feasible and an application was made. Last week it seemed we didn’t have time for the application to be granted and KS too frail to be transferred. Since then he ‘plateaued’ and it seemed very much worth it after all to find a more suitable place for his final days. We had a very difficult day yesterday with KS agitated and frequently in pain, and frankly, not in very good spirits. The news this morning that a place was found in a hospice was very welcome. His sister Zoë and I both travelled with him in the ambulance. The paramedics were very kind. The ambulance drove southwards and we closely passed our home near Oval. We arrived early afternoon.
At some point later in the afternoon I asked him whether he wanted to have some water. There was also some apple juice, so we tried that. He hasn’t been able to drink from a glass for quite a while. He didn’t have enough energy for sucking a straw. So I thought I would ask whether they had any of those sponges on sticks that are used in the hospital. I asked one person. Then met a nurse in the hallway and told her I asked for something to help KS drink. Operation apple juice started. There were three different kinds of syringes and three staff members involved. KS’s bed went up and it reminded me of a space ship. The bed was also adjusted to put KS in a more upward position. A pad was placed over his chest. Different syringes were used. It didn’t go that well. He said: I am exhausted. I smiled to myself thinking about this scene when I went home this evening. The people in this hospice are incredibly kind and so very eager to please and help. It is wonderful. I was also very grateful to have something to smile about after a weekend that I do not wish on anyone.

It is Saturday. Kamalashila is still alive. But I am not sure for how long. I am sitting on a chair next to his bed. And typing this text on my iPad. (I know he is happy with me doing that.) His eyes are closed. His breathing shallow. Just now the battery was running out on a device that is feeding a low dose of pain relief into his arm. I was meditating when the noise started. It didn’t wake KS up. I went to find the nurse who is looking after him this shift. She had to go to another ward to find batteries. I was anxious about the potential of the noise disturbing KS. It didn’t and hasn’t. 

When I was meditating before this brief incident, I encountered noises of a helicopter, airco, the pump for his mattress, clatter and voices from the ward, somebody groaning. And the wafts of lunch being served on the ward, reminiscent of mashed potato and gravy. When I wasn’t smelling odours or hearing noises, I was feeling into the heaviness of my heart, sensing edges of dark thoughts. Allowing those edges to smoothen. I was breathing in heaviness and breathing out lightness. For myself. For both of us. For all of us. 

One thing I am sure of. All of this, all of this experience is different from how I had imagined it. I am not even that aware of having imagined it. But however we had been envisaging KS’s dying process: this is different. 

Another thing happens. KS is in pain. All over his body, he says, and he also uses an expletive. It is the first string of words in many days. I try to find his nurse. We are waiting for some more pain relief. Luckily another nurse comes and responds, and now it takes twenty minutes for this to work.

After Kamalashila arrived on this ward from ICU it took a few days to establish ourselves here. I needed a bit of time to recharge, to a degree, from the very intense time since this last hospital admission started. But now we seem to be in another phase again. He needs more support. I feel far less at ease taking time away from him. Even if he loves his solitude. Right now that doesn’t seem as relevant.

On Tuesday during a big medical meeting, the decision was taken to not put Kamalashila through more new medical procedures. People came in twos: haematology, IC, palliative care, sisters. And there was myself and in the background KS: in the shape of the lasting power of attorney for health and welfare that he had arranged for me. It was difficult. It was strong. I cried and an unlucky someone offered me tissues. Over the course of that day and the next he was slowly freed from tubes and machines. He still has some, which are all about him being comfortable. He has not been able to take anything orally since last week. Perhaps the last thing he has eaten was a piece of mango. Last week he had a tube inserted through his nose leading into the stomach. This was to feed him and also to administer medication that needs to be taken orally but is not available in IV form. The food was originally also to help stabilise his bloods when the tumour lysis syndrome was playing out. The food has now stopped.
His kidneys are failing. His body is holding onto the water element. Unlike myself. Although I haven’t cried much these past two days. My role has shifted. I have became a protector of his space, alongside his sisters. People have asked me to pass on their wishes, but it looked as if it disturbed him when I did. It was taking him out of himself. He is concentrating on the dying process now. He was moved to a quiet room yesterday evening after a day of waiting for a single room in a hospital that was on ‘red’.

After he was settled in the side room, with Manjushri by this side, I went home and slept well for the first time since he was taken to the hospital in an ambulance. I knew he was safe. But also he was alone. He has been craving solitude for such a long time. His month solitary in November could not go ahead as we were moving back to London. Then as he was preparing for a month’s solitary in April, in a field near Glastonbury, he fell ill and was diagnosed with terminal cancer. Since then it has been one medical thing after another. No opportunity to go off on his own. So now, as he is approaching death, we are riding the fine line between trying to grant him as much solitude as possible and protecting the space. I am trying to act on his behalf, in his spirit, with his character and wishes in mind. It is the least I can do. I am also trying to look after myself a little. These days are the most challenging of my life so far. And possibly the most rewarding too. I feel privileged in helping to support him to die in a way that honours his life, in these far from ideal circumstances. Though actually, strangely, they may be kind of perfect.

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.