Month: September 2024

A week has gone by and there have 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.