Yashobodhi's blog -

Wet socks

It has been a month since Kamalashila was here at home with me. It is still strange to be here on my own now. I am sitting on the yellow couch again. Only this time it is my couch. The sky is grey. The concrete building facing us (or rather me), the one I am determined to like because it is called Holland Rise, looks flat and dull. My legs stretched out in front of me. I am wearing his merino woolen socks and one of his jumpers. The colours match, which is a coincidence. The socks are wet. We would be making lots of jokes about socks. Wet socks are the pits. They are wet because I have been spraying the bodhi tree with water containing a splash of vinegar. I am still trying to bring the tree back to health.
A friend kindly came this morning to help with some admin around KS’s death. We will have to do multiple rounds to finish it all. Just now I went through a pile of hospital papers he had received since being hospitalised at the beginning of April. Discharges. Medication lists. Consent forms. Appointments for visits, scans and blood tests. I added these to the already quite bulky file of past appointments. Problems with his lungs, skin, teeth, kidneys, hernias, MS. A few days before he died I was lying awake in the night thinking about all the different doctors, specialists, nurses, porters, physiotherapists and other medical staff members he has seen in the past half year. There must have been hundreds. So much care and compassion. But at the moment I feel precisely nothing. Perhaps a touch of cynicism. I am not enjoying this. The lymphoma team sent a condolences card. I just hope this means they will stop phoning. Last week Kamalashila’s phone rang. I thought I would pick it up. It was someone from the medical centre offering him a vaccination. I bluntly said: he is dead, he won’t be needing that. The person phoning was deeply shocked. I was not enjoying that either. My brain doesn’t allow me to realise he is dead. Which is just as well.

I found this lovely drawing at the back of KS’s discharge summary of his hospital stay at Guys from 1-4 Sept.

It is final

A week later. My heart is in upheaval and aches. I have been to the rose garden in Kennington Park just now. Sitting on a bench, I opened some envelopes with condolences cards I had found in the letter box on my way out and read them. I very much appreciate all the loving thoughts being sent my and our way. I needed some time alone today. Yesterday I registered Kamalashila’s death at our local town hall. I had felt anxious about this. I do not like forms and formalities at the best of times. As the time for the appointment came and went, I became more irritated. I could not bear the jokes the warden made. I could not bear the informality of the staff there, looking at our records and whispering to each other. I felt outraged by the appointment not being on time, but going 15 mins over. I also could not bear the vicinity of my friend who is still kindly staying with me to support me. In the office of the registrar I was irritated with the seating arrangements, the registrar’s hairline and later also about the misspelling of the cause of death as lymphonia. That was one of the mistakes. I can see in retrospect this is quite funny. At last the correct certificate was printed.
More things about the afternoon seem funny now. I made sure my friend knew how to get back to my place. I knew she had a key. But I could not help myself: I fled. I just needed to be on my own with my excessive irritation. As I was roaming around in the Brixton Orchard, which is built over a nuclear bunker, I spotted my friend passing on the other side of the street. I hid among the trees. I can see how funny this is, in retrospect. I am certainly not proud of myself. After a while I walked into the opposite direction and it was then that I spotted the library. I spent an hour or so in the library, on the first floor, looking out over that wretched place where I had registered Kamalashila’s death earlier. It was real. It was official. He is no longer here. I started walking home and met a friend on the street. This was lovely and it was good to briefly chat about what had happened. I then went home. My friend came back after a while. I hid in my bedroom and then in the bathroom. I cried. My glasses collected my tears. I then cried all the way through eating the food my friend had prepared. It was not a good day. It was final. I am alone, in a way.

I cannot bear anyone too near now.

Wallpaper at Lambeth Town Hall, which I won’t look too long at.

Looking after Bodhi

It is only five days ago that Kamalashila died. A good friend is kindly staying with me these past days. We have taken all the excess medication, a big bag, back to the pharmacy, labels removed as requested previously. This included the end-of-life drugs. The bag was big and the pharmacist looked hesitant. I said: my husband died. She could not refuse. My friend and I gently sorted through clothes and taken some to a charity. We made a start tackling the bodhi tree in the virtual vihara. This is how I have started referring to the room in this flat that Kamalashila used for his online sessions. Where he sat and talked to visiting friends. Where he wrote at his desk. We also meditated there in the mornings. Back to the bodhi tree: it developed into a small tree out of a cutting from the tree in Bodhgaya. We were sent two cuttings by post twelve years ago or so, and because we missed the delivery had to collect from the post office a few days later. One did not survive the transit. The other is still alive, but going through various episodes of assault by insects, among other things. At the moment it is rife with aphids. Kamalashila would treat that tree and it hasn’t had much attention in recent times. So my friend and I have been removing aphids from leaves and stems with a sponge and soapy water. There are quite a lot of leaves. She regards it as a meditative activity. I am not that keen.
The medical examiner phoned yesterday about the death certificate. This was about what had been suggested as the cause of death. He had carefully gone through the medical records and was asking how everything had been and whether I had comments and suggestions about the care Kamalashila had received. It was a good conversation and he was kind and considerate, but it stirred me up. It brought everything back again. In as far as it had been away. It is all quite a lot that is coming towards me in the aftermath of Kamalashila’s demise. There is so much to do, think about, arrange, decide. Luckily a great number of issues can be dealt with further down the line. But right now I am experiencing overload. I also need to attend to how I feel, to experience the energies in my body. My heart is too full and tense. So I am sitting here and I write. It usually helps bringing some sort of order and perspective. It is all still too much. Far too much. How strange this all comes with a loss.

Hole

It is three days after Kamalashila’s death. A nurse at the hospice had told me nothing would be happening during the weekend regarding registration etcetera. So I did not have to think about anything like that. I walked along the river with a friend. And yesterday morning I went to the hospice, accompanied by another friend, to go through all the steps that need to be taken. Later we had coffee and she listened to my account of the past three weeks. She accompanied me home and sat next to me as I made the appointment for the death registration. This felt very significant. I cried. We talked through what needed to be asked and said before I phoned the funeral directors to arrange the direct cremation. Kamalashila’s cremation will happen in the Lambeth Crematorium in Tooting. I smile when I type Tooting. It is a significant place for our Buddhist community.
Later in the day I met another friend who is going to help with the memorial service. We discussed possible dates. We talked about Kamalashila. About the last weeks. I came home. Cooked a meal for myself. I have hardly been home. I have only come home to sleep, have a bath, read a book, do some necessary chores. I went through the sad contents of the fridge. None of it has had much attention and a lot of it needed to come out and be thrown away.
This morning a good friend came to collect the drum Kamalashila wanted him to have. The beating of that drum reminds me of the beating of his heart. It represents his passion and his voice. I felt a bit sick when it was packed away. But it goes to the best home for it and was received with pride and gratitude. I know it will be put to very good use. Kamalashila’s virtual vihara feels clear and calm. There is no sense of lingering here. We have had a lot of months to prepare for his death, so we have talked about where things would go and how to approach this time after his death. But of course there are many bits and pieces that need to be decided on and that we hadn’t thought about. And it is quite early days. I feel I first need to process what has happened since the new diagnosis. I haven’t even sensed into the giant hole Kamalashila is leaving in the fabric of my life.

I found this on KS’s phone, dated 4 January this year. Not the best photo of him, but standing with a poetry tile on the Southbank. The verse is selected by his father who was a surveyor engaged with developing the Southbank.

No more I love you’s*

I still need to write. Kamalashila died yesterday morning. I am still here. It is incomprehensible. I do not know how I feel. I do feel something. I feel many things. But I cannot give it words. Sometimes I cry. Sometimes I just gaze ahead. I talk to friends and cry when I think about the past three weeks and the pain Kamalashila had to go through. I cry about the pressure I have felt making some decisions. I said goodbye to him a number of times yesterday morning, after he had died. I thanked him for our lives together. For all he has given me. I kissed his forehead when he was still warm. I stroked his hand. I kissed his forehead when it was a bit colder. I stroked his hand again. I looked at his chest. It was not moving, not heaving. No more laboured breathing now. I kissed his forehead later and it was much colder. I kissed him for the last time when it was 11 am. It was seven hours after he had died. He was quite cold. I took the Manjushri rupa. Left the scarf that was draped around it with Kamalashila. I walked out of the door and left him behind.
The last time I had seen him alive was the evening before. I had been looking in regularly to see how he was doing and sat with him for short periods. He was very close to death, the doctors had said. It could happen any moment. And you could see it in his face, hear it in his breathing. But when I walked in at 9pm and chanted a mantra for him, I saw something on his face that made me think: it is enough. He doesn’t need me here anymore. He wanted to be left alone. So I left. His sister Zoë and I were at the hospice. Both sleeping in different rooms. We asked the nurse to wake us up an hour after he had died. So he would have that hour still to himself. They checked him every 15-20 mins, by shining a torch on his chest, in the darkened room. The room felt very clean and quiet. He was clean and peaceful. The air was fresh.
At a quarter past five the nurse knocked on my door. He is gone, she said. We embraced. These nurses and doctors at the hospice are so amazing. He was later dressed in a suit and t-shirt. One nurse put a purple flower on his chest. She also opened the window. For his spirit, she said. Kamalashila 2, as he called himself after the new diagnosis, always wore suits. There is no space in the hospice for people to come and visit the body later on. But we had some hours. They stretched it till 11am because it was cold. I put a message in the group with helpers and good friends. Some friends came and sat with him. Outside his room we sat and talked. I talked a lot. The friends listened and witnessed. I felt held. Then at 11am I went in to say my final goodbye and collected the rupa. This part was now over. His body was going into the morgue. I went on the bus. Home.

*This song is playing through my head today.

Diffuse

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.

KS in Cornwall, 2012, in front of the Merry Maidens. I love this photo of him.

At the hospice

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.

Self reflected in values in hospice corridor.

Operation apple juice

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.

This is KS’s view from his bed in Clapham Common. He loves the colour of the flowers on the right.

This is different

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.

I found this on KS’s desk this morning, ready for him to take the next day. Of course he never took them because we had to phone an ambulance in the middle of the night.

Unplugged

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.

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