Month: August 2024

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 Will they be needed before they go out of date?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.

We are in a different hell realm now, I said to a friend. But this one has many doors. But perhaps I am exaggerating. It is all so very mixed and there has been a lot of tenderness, clarity and love in the past months. After it became clear that Kamalashila most likely is not going to die anytime soon and now even has a good chance for remission, there is quite a bit of catching up to do emotionally and cognitively. I am talking to different friends to process what has happened this week. In the afternoons I go to the hospital to visit Kamalashila. He is feeling a lot better today, but is still too nauseous for much eating. This afternoon I will take porridge in a thermos flask. It is only custard and porridge for him at the moment.

I have a bit more time to myself in the mornings and feel more energy to engage with non-cancer related projects. But there are also phone calls to be made from and to the hospital, and emails to write. After starting the day upset, I am calming down and breathing more deeply. I am asking myself: what has actually happened? I keep going back to that conversation with the oncologist on 1 May. The colonoscopy had failed to produce any conclusive results. And somehow it was decided not to follow this up with a needle biopsy. Perhaps because the chances of KS surviving very long were statistically very slim at that moment. We don’t know. My mind is coming back to it, asking: Why? Why? But it is better to let that go now and cautiously start looking at the future and preparing for it as best as I can. Perhaps it is even better to just be here, now. But hey.