Category: treatment

It is Tuesday. I am in the kitchen of our flat with my laptop. The washing machine has a few minutes to go. Life goes on. A few miles down the road KS is plugged into a frame with pumps, tubes, monitors. This is exactly what he never wanted. But who does? When he was still in palliative care, he would not have been taken to the intensive care. But here he is. And he said last week he felt his body is done. It has reached its max. It cannot cope.
I had hoped that by now he would have come out of the hypo delirium he is in. It is probably down to the kidneys not working at full capacity. But the relationship between these markers and the delirium is by no means simple. When I arrived by his side yesterday, it was clear he was a bit less present than he had been the day before. I was upset. I had hoped for improvement. I cried. A nurse offered me tissues. I refused. She said I had to be strong. I said I was strong and that crying did not make me less strong. I even told her KS tells me it is beautiful when I cry. It shows what is in your heart, he said. The nurse laughed and said, oh, is that what it is. I had to calm down after all of that. Nobody can help it. In some way she is right of course. But this interaction was not what I needed right there and then. Of course I often get things I don’t need and don’t get another heap of things that I do need.
I am trying to be faithful to KS’s values and beliefs, as we negotiate the untrodden territory of him not being able to voice his wishes. I am attempting not to second-guess myself too much. I am touching in with my feet to ground me. I am calling on my strength to support me, to do what needs to get done. To still look after myself in the midst of it all. To do what is right. But I also cry. And why do people have to rush towards me with tissues? I have a serviceable sleeve. Sometimes you even have to stop crying so people can locate a tissue and then wait for them to deliver it. I tend to feel the tissue is to make me stop crying. Because it is difficult to be with grief, with sadness, with heartbreak. But when I cry, my body releases tension. What would be helpful is to just kindly let me be, witness it, bear it. There will be more tears. We can count on it. I might even get tissues.

I wrote this yesterday on my iPhone.


I am sitting next to KS in intensive care. He is asleep. He is less agitated today. There are a million impressions to digest. Impressions from the past week. But before me are the impressions of right now. Different shades of purple on KS’s right arm against light skin. This arm has two canulas, one wristband and large patches of dark and lighter purple and blue green. Also some brighter red. Matching the red in his wristband indicating he has an allergy. Every time he is admitted to hospital or getting any medical treatment, he needs to answer the question: are you allergic to anything. He has to answer penicillin. He is then asked how he responds to penicillin and then he says he doesn’t know as it was too long ago, when he was a child. If the question is asked by a doctor, they will then tell you that penicillin is still the best. Not sure where this story about penicillin is going. I am going back to his wristband. Noting all the tubes going into his body. And then back to myself.

I am not wearing a face mask today when I sit with him. I have had to keep myself afloat with paracetamol this week. My system feels awash with stress and adrenalin. I am hoping for a morning of rest tomorrow. But this is of course not guaranteed. On the table next to his bed, a Manjushri rupa, his glasses and his phone. He hasn’t used his phone for a few days now. This is another thing to get used to. He is normally so often glued to his phone. I rang him a few days ago about finding the rings. But then things went down and he hasn’t been very vocal. It was the last time he could pick up the phone.

The physical markers of his body are stable at the moment. The tumour lysis syndrome seems to be under control. The severe constipation has cleared. But there is still infection and a body trying and working so hard to find balance and health with the awe-inspiring help of IC wizardry and skill. After I came back from an hour break with a friend, he seemed to be more responsive. There were a few minutes of presence and lucidity. During this brief time we had an absolutely amazing conversation in which he told me, loud enough for some of the nurses to hear: I am not going to die. It was much more magical than that. But I will not commit this to words here. It may or it may not be. We don’t know yet.

It is hard to imagine the joy I felt last week when Kamalashila was spending time on the Southbank with a good friend. Just the fact he could go out on his own, walk around and come back hours later. It made me so happy. He had, however, he was so sorry to tell me, lost his wedding ring. This is one of the rings that we ordered a few months ago. They had arrived and had turned out to be too big. Through no other fault than me having a narrowed awareness when it came to sizing. And KS’s fingers were thick with oedema at the time. So I was wearing my ring on my middle finger and his was on his index finger. Weeks later it occurred to me we could try my ring on his hand and have mine resized. It was a perfect fit on his hand. So I arranged to have the bigger one resized. I arranged it during one of these times he was either in or out of hospital: I have totally lost track. Then this morning as I was rooting around for a longer charging lead, because the sockets in his critical care unit are quite high up, I found the lost ring under his desk. I phoned him. I was so glad he picked up the phone, as texting is impossible at the moment. He was happy to hear it and called it auspicious. I very much hope that it is.

I do not feel like writing a post, but wanted to give an update. I am pasting below what I sent to the WhatsApp support group yesterday evening:

“Esther [Kamalashila’s sister, YB] and I were in Guys this afternoon. Unfortunately KS has been transferred to the Critical Care Unit. The next few days are going to be crucial. He has far too many toxins in his blood after the chemo therapy and his heart and kidneys find it very hard to keep up. He will receive special treatment for the overflow of toxins, basically cancer cells breaking down too rapidly. He also has a strong infection and the constipation is still not solved. He was more lucid today, but had had a difficult night. the confusion is probably caused by the infection and the kidneys not working well. Esther and I are going back tomorrow.”

I have located myself on the ground floor of the Guy’s Cancer Centre, next to the main hospital. There is a café. People are sitting around waiting for appointments, accompanying family members, staff members are having lunch, or perhaps people are just dotted around biding their time, like I am. But I guess not a lot of people may do that. I hope not. Kamalashila’s bowels are not showing any movement, in spite of attempts. It is complicated, with a big tumour there responding to the chemo, fluids, and masses of digested food.

This morning after feeling frustrated with breakfast offerings that do not contain fibre, he was adamant he needed beans. He asked for beans. Demanded beans. But of course he didn’t get anywhere. All food is standardised at the hospital. I saw somebody posting a pic of being in a German hospital and I saw fresh vegetables, salad, a healthy slice of bread. That is not how it is here. Food has been a big problem ever since KS became ill, and it is at its worst when he is in hospital. Though he had a week or so in the Summer when all seems to be going well on the food front. But this morning he was ravenous and he knew he needed to help his body with fibre. So after the failed attempt in-house, his next attempt was me. ‘Why a whole hour?’, he texts me. This is one of the texts that have come across clearly. The opioid pain killers are making it hard for him to be present and coherent at times. He has asked for them to be reduced. He has less pain this morning. I was so glad to hear it. Pain is a weird thing. And medicines build up. It is hard to get it right.

Anyway, back to the beans. Why did I need an hour to get there? It was mid morning, but I needed to have breakfast, hang up the washing, put some clothes on, and then heat up the beans, put them in a thermos, pack my bag and get on the bus. This all happened. Having delivered the beans, and watching him forcing himself to eat them, I could only stay for 10 minutes, as it was outside of visiting hours. So now I am here. Waiting for the visiting hours to commence.

Apart from a wobbly table, all is very well here, with me. With KS not so much. There seems to be another infection brewing and fluids are not going to the places they are supposed to go to. Luckily it is Monday. The PIIC line is being cleaned, or doctored, or repaired. This will make it easier to get bloods. The doctor has had to take some from his knuckle, which is not a great place. As I am sitting here with my elbows leaning on the wobbly table, my chin leaning on the palms of my hands, I just know this is life happening. It is no use not wanting it. It will come. It is here. It is moving. My prayer is now for the bowel to do the same. To give in and let go.

I came across this fence yesterday when I walked to the hospital (Bath Terrace, Southwark) and recognised it as recycled WW2 stretchers.

After celebrating a false alarm on Friday, KS wakes up in the night with terrible pains in his abdomen. I phone 999 and an ambulance is sent. It arrives after about 20 minutes, which is fantastic. It is now becoming more difficult to get anything in or out of KS’s veins, so the morphine cannot be administered via the vein. It has to be orally, which takes more time to kick in. By then we are in the ambulance and shortly after that we are on our way. The two excellent paramedics look weary coming to the end of their shift. After we have arrived at the hospital and before we go in, KS gets another dose of morphine. We are now in a cubicle in the Majors ward and it is nearly 6am. KS gets a scan. After quite some time and a shift of staff, we hear that the problem doesn’t seem to be as serious as was feared. KS is still in a lot of pain. A nurse walks in after the takeover and says that KS is free to go home as the potassium is not dangerously high. Here I start crying. I am more upset than I remember being since this whole journey started. KS is still in a lot of pain and I feel desperate. I explain this is wrong, and this info is about yesterday evening. It is all understandable, but yet it is hard. It is also very cold and KS has lots of blankets piled on top of him. The nurse tells me later the heating has stopped working a few days ago. I am getting a cup of tea to warm me up. For KS it is nil by mouth, as they say. By midday things seem to clear up. It was said it was not serious. KS is able to walk around a bit to stretch his legs and he has less pain.

We will now be waiting for the haematologist to decide what needs to happen next. And the hospital is on weekend time, so seeing a specialist is much slower. I take the opportunity to go home for a few hours to receive the broadband engineer. KS is adamant I should go as it is important for us to have a working internet connection, he says. After I go, things go down again. His blood pressure drops and it is hard to get a working drip for him. I reenter the cubicle a few hours later when everyone is working to make this happen. By this time (5pm) he hasn’t had some important meds for quite a while. I have brought them along from home, and we access a list of medications on his phone, and soon he is getting the most important ones. He is also transferred to the medical ward. A haematologist comes and because of the blood pressure dipping, he still wants to make sure nothing is damaged in that bowel, which could happen as a result of the chemo. Now we are waiting for the surgeons, who have been operating the whole day. KS is sleeping through most of it now, finding it difficult to be present with so much pain medication in his body. But occasionally he comes out with a joke, an apology, a grunt or a tired smile. I leave, which is difficult to do but which makes sense. He texts me late in the evening he will be transferred to Guys hospital. Which is where he is now. It means the bowel was considered to be undamaged and other treatment can start to help the bowel and the pain. I have spoken to the nurse who is looking after him this morning. I will go to see him this afternoon when the visiting hours start, but I am taking the morning to decompress, text and write.

I was very much enjoying a week without medical emergencies and some new and exciting offers of work flowing in. All was going well, apart from the broadband packing up and a family crisis. KS had his second round of treatment yesterday and all the various fluids went in one after another without any problems. The doctor had wanted another blood test, so this was attempted. Not much blood came out so the nurse ended up sending three vials with a small amount of blood to the lab, hoping it would all add up to be enough. After all was done, we had a bite to eat in the cafe of the cancer centre village, collected more drugs from the pharmacy, and then took a taxi home .

Today I went out shopping in an attempt to spend a voucher somebody very kindly sent to cheer me up. Next time more lucky. When I came home and walked into the flat, KS told me the doctor had just phoned. His potassium was too high and he had to go to A&E. Ok, I said, let me make a sandwich. I did and we took a taxi to A&E. We waited, an ECG was done, and a blood test, and then we waited some more. KS was feeling fine. We were hoping it was a false alarm. After a while the nurse helpfully told us the potassium was not high enough to be treated. It had either come down since yesterday or it was a false reading. We then waited for a doctor to arrive to confirm all of this. And this is what I am still hoping the story will be as I am typing on my phone sitting in a cubicle with KS. I am hoping we will just be going home together a bit later this evening. I am hoping we will celebrate a false alarm. And it was and we did. Home, and we encountered two foxes on the way.

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.