Author: Yashobodhi

A week has gone by and there has been no health upheavals for KS. I am enjoying the calmer waters. If all goes well, he will be embarking on his second round of treatment tomorrow. It is an intricate journey of negotiating kidney values and the capacity of the heart to work with the drugs that will be entering his system. Luckily last week’s hospital event did not form too much of a hindrance to continuing the treatment plan. The best news is that the calcium in his blood has normalised. Hypercalcaemia has been the nemesis since all of this started to manifest in April. And now it seems to be in the past. We are not at all out of the woods yet, but it is a hopeful sign.
Even though it has been a relatively calm week, my system seems to be in overdrive. I have to tread carefully. I have been on long walks, have had baths and taking it fairly easy when I can. Yet my heart wakes me up in the middle of the night and then I just have to wait until everything calms down again. I can help a bit with cups of tea and some quiet reading, some paracetamol and antihistamine, but basically I just need to wait and gently feel into that body of stress. It has some clearing up to do. A backlog of tension.
Some parts of my life are starting up again. I go to a meeting, facilitate an online session for a museum, make a start with teaching some classes again. The day after we heard about KS’s revised diagnosis and prognosis, I filled in an application for a Lambeth tour guide course. Earlier this week I did an interview, gave a presentation and was admitted to the course. It is something for the future. There is now a plan for the year ahead. I am learning a new skill, putting more roots down where we live, meeting new people, spending time on research and hearing more about the past. I remember a Dutch Buddhist teacher saying: if you are looking after the now, the now will look after the future. It feels wonderful to have some plans. It feels this new step is a good way to look after myself now and in the coming months. May it be so.

Rain is coming down and streaking the windows, incidentally watering the plants in the planters on the windowsill. I am glad they are being looked after. In the background I can hear Kamalashila making an official phone call (to an institution). He is home. He came back from hospital yesterday evening. Another home coming. And I hope this one will last long. Or longer. Every time he comes home there is another list of medications to contend with. Start taking these medications and stop taking these others. Review later.

There are more medical calls and actions to go through today, but I also need to get down to some other bits of pieces that have to do with my working life. Which feels a bit like a piece of land lying fallow. I need to return to it. I crave to come back to it, but there simply has not been space. And there was that matter of preparing for Kamalashila’s death not so long ago. We are both keen to return to some sort of normality now. He even did a class from the hospital, using the interview room on the ward. I am looking forward to engaging with a bit more work, a wider realm. Creating more space for other people. The focus has been very much on KS and on myself this past half year. I hope this can change. But this I cannot choose. We will have to see how things go, how KS’s body will respond to more treatment. Rain is still coming down. It somehow blurs my vision. Clarity will come. There is no doubt.

It is Monday morning. Kamalashila is in hospital again. After a lovely day on Saturday with a walk to the park, pizza and ice cream, we noticed his temperature had gone up.* In this stage of his treatment you need to phone the helpline when the temperature is over 37.4 and if you have diarrhoea. It was. And he had had. So we phoned. The oncological nurse told us to go to A&E. A raised temperature could indicate an emergency. We took a taxi there and KS was seen fairly quickly. Shortly after twelve o’clock, after tests, KS was told they wanted to keep him in to do more tests. Luckily the emergency was ruled out by then. But the infection markers were high. He was going to be transferred to Guys (A&E is at St Thomas).
I went home, which involved walking back and forth a few times from the bus stop to the hospital’s parking garage. Taking the bus would mean a 15 minutes wait, so I ordered an Uber. This is half past twelve and not my favourite time to stand alone in a deserted concrete jungle. I will cut out the bit of me trying to find a toilet, trying to cancel the Uber, walking back to the bus stop and the Uber driver calling me to ask me where I was. The walking past someone trying to set fire to something, etc. I came home and felt wired. So I did not go to sleep until late. And then inevitably woke up early.
Kamalashila had been taken to Guys in the middle of the night. I received another porridge request and went to visit him with a rucksack full of stuff he would need for his stay at the hospital. A doctor came to speak to him at some point whilst I was there. He had by that time received multiple doses of antibiotics. She decided to stop all of that and wait. A bit later on she told us the source of the infection had been found. At that point it looked as if he might be able to come home today. Right now that is not that sure. He is in an isolated room because of the infection being highly contagious. I feel stressed out, but the writing calms me down. There is a lot of learning to be done with this increased risk of infection. I need some humour, but right now it is slightly difficult to grasp.

* Just to say it was not the pizza or the ice cream, but must have been something he encountered or ingested on Tuesday or Wednesday. We don’t know how this has happened.

It is the last day of the month in which KS did not die after all. He seems to be feeling better every day. He jokingly refers to himself as Kamalashila 2. He is cheerful, after a period of adjustment to the new conditions. He has had a blood transfusion yesterday and is taking a vast number of drugs every day. A new regime has started. We are on a learning curve to understand the ins and outs of this one. The who is who’s, and when to call which number.
We have done a bit of celebrating this week. First after KS came home from hospital on Monday. Then a few days later when I had managed to shift a number of objects that had been cluttering the flat. My bicycle went to someone who works at the hospital. I was so pleased about that. It had been taped to the wall under the broken coat rack in our hallway since we moved in last December, and I hadn’t been able to part with it. Goodbye.
I removed the old rack and installed a new one, with KS’s voice giving me advice and opinions from where he was sitting in the kitchen. Out of sight. When I put the coats on the new rack, I added Kamalashila’s winter coat that had been hanging forlornly on a hook in the front room. It appears as if he is going to wear it after all. I was glad we hadn’t passed it on already.
It feels great to have more space and fresh energy in the flat. I also took a bag of excess drugs back to the pharmacy. All medications that had been tried and hadn’t worked, or that had become superfluous. Meanwhile, somewhere in one of the cupboards, there is still the bag of end-of-life drugs the palliative care team had ordered for KS. We are not quite sure what to do with these yet. Will they be needed before they go out of date?

The taxi driver knows a better way to drive to the hospital. Not. We arrive there with only a few minutes to spare. We are in the wrong building. We should have known better. Having checked in at the right desk, 15 minutes late, we wait. After an hour KS’s blood is taken and the dressing around the Piic line changed. This also takes quite a while. We now have to wait for at least an hour for the blood results. We are back at the desk after an hour. We wait. We are waiting. Still waiting. There is a blood shortage. I have known about this for a while. This means that there may or may not be a blood transfusion, a nurse tells us. It may not happen today. Because it is perhaps too late in the day and a transfusion will take a few hours. If it does happen, if it is decided it will happen, it may have to be another day. KS is walking up and down through the corridor. I am delighted he has enough energy for some non-functional walking. He is back in the chair next to mine. And we are back to waiting.

I am slowly starting to conclude it may not happen today. But we are also still waiting for today’s calcium value, which could create a whole different scenario for the rest of this day. A nurse comes and tells us the transfusion will be tomorrow. What will happen, will happen, says KS. I don’t mind, he says. He is reading the news on his phone. Blood products are wheeled down the corridor. I am trying not to slide off my chair.

I study the windows. The patterns of accumulation of dust on the glass. I wonder if this phenomenon has a name. KS asks ChatGP and comes up with accretion. I observe the concrete wall, the lighting, the smoke alarm in the ceiling over my head, which has a number on it. I look at the radiators in this corridor. I count ten in this stretch of corridor. ‘You know what I mean?’, the woman next to us says to her companion. This is also something that gets repeated.
A nurse calls us in. And the outcome for today is they are taking more bloods now so they can match it correctly tomorrow (?). And a bit later we hear the calcium is within bounds. Gratitude flows. Not within bounds.

Kamalashila is home and a new chapter begins. There is some admin to do. In previous months I had thought we would be doing death admin for him by this time. But it is going through lists of medication together, with their amounts and times a day they need to be taken. KS has phoned the hospital and the GP, and the attendance allowance people have me currently in their queue. I feel my feet on the ground. The slightly scratchy wool of the carpet rubbing against my socks. Muffled voices from the flat below. Shouts from some people working on the street. My eyes pick up the movement of cables clustering outside the window. The reflection of clouds in a window set in the roof opposite the house. And apart from the clouds, dark unidentified shapes and nothing much else can be seen. It is time to rest, to return, to pace and then to begin again. But maybe it is a bit too early for that. Some cautious planning. Looking a bit further ahead. And ordering more porridge. Because we are back.

Not much happening here this morning. I am not feeling much. But perhaps I am feeling a little bit empty. Kamalashila is still in hospital. He can go home when the calcium has gone down to safe levels. And when the blood is looking good and there are no signs of any adverse reactions after the first round of treatment. It may be he can go home tomorrow. But perhaps not. He has been in hospital for two weeks now. I have been visiting every day, always arriving around 4 and leaving around 7pm. I do not do too well with this kind of regularity, but I tell myself it won’t be for long. And it is for a most definite good and dear cause and I do it gladly. There is just something oppressive for me about these kind of routines.
I usually arrive with coffee. We have been trying out different kinds. It is always a latte. We have been trying chilled ones these last days. Yesterday I seemed to have hit bull’s eye with a carton of latte. But it is not sure how long that one will last. There is a long list of foods that seemed to get the green light initially, but then needed to be dropped a few days later as they no longer appealed. Porridge has been struck off a while ago. He is still nauseous, and doesn’t have much appetite. He does have a few things he can and will eat. This afternoon I will try some Indian sweets, which seemed to interest him when I mentioned them yesterday.
I am sitting here on my yellow couch and now I clearly sense I am weary. This situation is all-consuming. There is not much mental space for much else. Kamalashila’s body needs to find some sort of balance. And on my side I need to maintain my sanity and sensibility. I keep touching in with friendship, love, tenderness and inspiration. Also I keep coming back to the space of my heart. Finding myself strangely happy and alive when I arrive there.

It is Friday. Two weeks after we heard about the new diagnosis. Kamalashila’s treatment started on Wednesday, after a lot of preparation and some delay. Actually quite a lot of delay as he had been on the palliative path since the beginning of May. I felt quite privileged to be there when he received the first component of the treatment, a targeted therapy drug. Finally the cancer is actually being treated and at last this was not about alleviating and managing symptoms. It was a hugely significant moment. Of course there is no way of knowing how he will respond and if the drugs are doing what is hoped for. But it is incredible there is now a chance for a longer life, hopefully in reasonable health. It may not happen. But it may happen nevertheless. It is mind boggling what is happening now. Kamalashila is doing well and may be able to come home at the weekend. I am not counting on it. But perhaps it may go ahead?

Here at home I have rearranged the furniture in the front room and the bed room. Getting rid of some broken pieces. Marking the change in our lives. A new arrangement, a new outlook, another spin of the wheel. Here we go.

Monday has come. I had been wondering how to take my mind off what was supposed to be happening at the hospital today: KS’s first round of treatment. But through a series of innocent mistakes the PET scan that should precede the treatment is not going ahead. It means two or three days of delay. I am off to run some errands and as I am walking the streets I feel into my disappointment. It seems to be lodged in my stomach. As my mind repeatedly goes back to what has happened, I sense into my frustration. I try to be curious about it. I feel the edge of a strange contentment, but then we are back again to a level of frustration that makes my jaw go rigid. This goes back and forth for quite a while. When I text Kamalashila a few hours later, he seems to already have let go of the impact of the delay. He is reorganising his space, it seems. There are a few requests of bits and pieces that I should take with me when I visit him later today.

It feels good to have a few things going that are under some sort of control. After I come home I make granola as my current batch is running out. I am researching spelt risotto recipes (though it should have been barley, but hey ho). As the granola is cooling down and the nutty flavours keep presenting themselves to my sense of smell, it is time for some writing. Another way of putting things into some sort of order. Giving them shape. I fall into counting breaths. I drop into helplessness. I arrive where I am.

Kamalashila has now been in Guys hospital for a week. A week of lots of saline fluids, medication, fluids with medication, taking blood for tests, and then later today a blood transfusion. A few days ago he was fitted with a piic line. This makes things much easier because his veins are curly, apparently, which makes these procedures more complicated. The wound around it was bleeding a tiny bit when I arrived. He said I looked white as a sheet.
Tomorrow is a big day. A different Big Day than he was envisaging a month or so earlier in his blog. But this past week was all about preparing for the first day of his treatment. There is quite a lot that could go wrong in the first hours after that first infusion, but the probability of that happening is not very high. Yet, I sense fear in my heart. I feel shaky.
Last weekend he really reached the end of the line of what was possible with managing the hypercalcaemia. The revised diagnosis marks the end of that path and it did not come one moment too soon. Treating the actual cancer forms the beginning of the new path. There is no choice here. Not really. But he will be very closely monitored and there is a real and concrete possibility of remission. I just fervently hope he will start to feel better soon.