Month: July 2024

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.

We are waiting for the IV nurse to come back. She is seeing a patient nearby, whilst saline fluid is dripping into KS’s vein. His calcium is too high again and he was been feeling more unwell this past week. This weekend he is getting two litres of fluid in four bags: one in the morning and one in the evening. The medical team members are fantastic, without exception. It is wonderful not to have to go into hospital for these procedures. In the meantime I am preparing a slow cooking tomato soup. Yesterday evening as the nurses were waiting for the second bag to finish, I baked a cherry cake. Which included eggs. And I hadn’t cooked with eggs for 20 years.

Food has been all over the place since KS became ill beginning of April. At first it was him not being able to eat at all and being constantly nauseous. That week in hospital he was eating mainly custard. When he came home he shifted to porridge. That was the only thing he could ingest. This was also the period in which he could solely drink Pellegrino, and even that was challenging. There was an episode of liking seedless grapes. This was soon over. He could not bear any cooking smells, which made cooking at home difficult. He would sit near the open window to inhale fresh air. We had of course stopped eating together by then. Which I found difficult. I would cook a batch of four days of food for myself in a multi-cooker with the lid on.

When the nausea receded with the help of medication, cake entered the scene. And chocolate. And fruit gums. This was also the result of medication to stimulate his appetite. He became quite voracious for a while. Later on he started eating fairly normally again. And we resumed having meals together and then also cooking for each other. This is where we are now, though my healthy eating commitment is on a slippery slope these days. All the way through our living together we have mostly taken turns cooking. But I have had periods of time in earlier years when I was too tired and uninspired to cook on coming home from work, and then KS would be the main cook. He would send me pics of what he had prepared, so I knew what was waiting for me. I tried to find one of those pics just now, but they have all been deleted. I felt a pang of loss.

Last week my drive to cook took a nosedive and KS kindly did most of the cooking. Luckily my inspiration has come back again this weekend. So yesterday evening I finally made that cherry cake. After trying lots of shop-bought cakes that always fell short because he felt there were not enough cherries. This one was a triumph. And a sweet, much needed pleasure.

I have always been afraid of losing Kamalashila. One way or another. The difference now is: rather than this being a fear, it is an actual knowing. Knowing I will lose him. But not quite understanding what that means, how that will be. So far, it feels like I am in a waiting room. My life is suspended in some ways. Not so much in other ways. I am waiting for signs that something may be about to happen. But at that same time I need to be here, now, alive and present. To be alert to all those signs that all is still well, still going on, going strong. Appreciating all that is here. A better image is a half way house perhaps. Another life may start later, as this one may be coming to an end. But yet it is still very much happening, unfolding, rich with inspiration and love.

The first strong reminder for me of his impermanence, arose in an actual waiting room. This was when Kamalashila took his blood pressure whilst I was registering at a Devon surgery. There was a machine. A sign said that if your blood pressure was over 190 (?) then go to the reception desk immediately. His was a bit over 200. This was a big shock at the time. It led us to reconsider where we were living and how, and to make changes.

Ten years later, in 2017 and back in the UK, KS reported losing sensations in his feet. A few weeks later this partial loss of sensation went all the way up to his chest, as if he was wading into the water. Would this losing of body sensations continue? Would it result in death? His experiences could later be attributed to MS, and luckily a mild variant. But there was a period of having no idea what was going on. Which was worrying and frightening. Yet, even with a diagnosis, also with the current one, there is still a strong sense of not knowing. Not knowing how things will happen, how it will feel, what it will look like. The only thing I can be certain of is love. That will also change, no doubt. But love is here and love is here to stay.

I often feel quiet these days. I have not much to say. I can feel upset. It can sit heavily in my body: in my chest and stomach. But it is hard to give it words. I look at myself as I am brushing my teeth. How amazing that my eyes are seemingly still when my head is moving side to side, teeth and hand engaging with the electric toothbrush. These motor movements that actually really do not need me. Rain is coming down softly. The new flowers in the planters outside the windows must surely benefit from that.

As Kamalashila’s second guest of today leaves, the flat falls back into silence. There is not much sound within, but I hear an aeroplane overhead, some shouting children outside and the engine of the occasional car passing by. In my experience it is hard to find a balance between engaging with people and being with myself. I think KS has always needed plenty of time to regroup, to come back to himself, go deeper into his thoughts after seeing people. But now it is more of a search. How does it work best. A process of trial and error. There is more intensity in the meetings and less energy to engage. More time needed to recuperate and more space to find the way to the depths. How does that balancing work? Wanting to meet people, and at the same time needing to really meet yourself. I have never found that easy for myself. But these days I need more time to quietly sit and feel and think and sense. Watching the clouds go by. Noticing subtle traces of rain meeting roof tiles and cables. Leaving drops on the windows. As the rain falls I keep looking and pondering.

Weariness hangs around the flat. Plus lethargy. KS has a chest infection and started antibiotics today. He tires more easily now and the infection doesn’t help. It is evening and I try to gather my thoughts. To find perhaps some lucid ones, clustered together around a topic or a theme. But so far I am only finding that weariness: inside of me and around me. A sense of being drained.

I suspect I am not the jolliest person to be around at the moment. Luckily people do not seem to mind that much. I can remember that earlier in the year I took the decision to make this a year of cultivating joy. I am not doing too well with that. Although there are moments of joy in the day. These make everything softer. Lovely friends. Heartfelt messages and words. Coming across sweetly scented roses in the gardens lining the streets. Noticing the fall of light on walls in the dusk. The changing cloud formations in the sky. A sense of peace as I walk on the pavement in a quiet and straight street. An exchange of smiles with someone waiting at the same counter. KS and I singing and humming together in the kitchen. Our lives so intertwined right now. But yet I am on my side and he is on his. Walking different paths in different paces. Sometimes singing the same tune.

On my way to deliver a workshop, I stepped into the wrong underground train yesterday. I had to go one stop back before getting on the right one. I was only five minutes late. Not too bad. Last week I got on a bus heading in the wrong direction in very heavy traffic and after quite a bit of confusion and plotting in snail speed, I ended up taking a much lengthier journey home. I also spill liquids over surfaces. Charity shop clothes I buy don’t quite work. They are the wrong colour, shape, size or length. Shoes arrive in the wrong size. As do the rings. We make them work by KS wearing his on the index finger of his right hand and mine is on the middle finger of the left.

We did a hand-fasting ceremony on 1 May 2007. This was incidentally the same date we recently heard about his prognosis. Back in 2007 we were on a Buddhafield team retreat. After KS came back into our tent during the night, he said: “I smell May blossom in the air. Let’s get hand fasted.” We did. I was delighted. We jumped over a broom stick under a big oak tree during a hilarious and magical ceremony on Buddhafield land in Devon. The whole gathering, including us, dressed in clothes from their dress-up trunks.

We were legally married during the winter solstice in 2011. The proposal came over breakfast. He suggested it at the table before putting a spoonful of porridge in his mouth. Let’s get married. And so we did. We were so pleased on the day of our very simple wedding. We never had rings. But a month ago I was talking to a friend who had been ring shopping with her fiancée. I told her I had wanted a ring but KS could not see himself wearing one. He just didn’t like wearing a ring. I felt it didn’t make sense for me to wear one if he didn’t. What it came down to was: I had wanted one, but didn’t push for it. I told KS this story when I came home. He said: let’s get ourselves some rings. And so we did. Unfortunately when they arrived yesterday we found they are slightly too big. I do not know how that happened. But we make do. And who cares it is on the wrong finger. There is no engraving on the inside, but on the outside there are radiating suns. Suns coming up and suns going down. This seems symbolic. And this seems to be what matters most. The thought of it. The gesture of it. The connection. All a bit clunky, but that also seems fitting.