On Tuesday during a big medical meeting, the decision was taken to not put Kamalashila through more new medical procedures. People came in twos: haematology, IC, palliative care, sisters. And there was myself and in the background KS: in the shape of the lasting power of attorney for health and welfare that he had arranged for me. It was difficult. It was strong. I cried and an unlucky someone offered me tissues. Over the course of that day and the next he was slowly freed from tubes and machines. He still has some, which are all about him being comfortable. He has not been able to take anything orally since last week. Perhaps the last thing he has eaten was a piece of mango. Last week he had a tube inserted through his nose leading into the stomach. This was to feed him and also to administer medication that needs to be taken orally but is not available in IV form. The food was originally also to help stabilise his bloods when the tumour lysis syndrome was playing out. The food has now stopped.
His kidneys are failing. His body is holding onto the water element. Unlike myself. Although I haven’t cried much these past two days. My role has shifted. I have became a protector of his space, alongside his sisters. People have asked me to pass on their wishes, but it looked as if it disturbed him when I did. It was taking him out of himself. He is concentrating on the dying process now. He was moved to a quiet room yesterday evening after a day of waiting for a single room in a hospital that was on ‘red’.
After he was settled in the side room, with Manjushri by this side, I went home and slept well for the first time since he was taken to the hospital in an ambulance. I knew he was safe. But also he was alone. He has been craving solitude for such a long time. His month solitary in November could not go ahead as we were moving back to London. Then as he was preparing for a month’s solitary in April, in a field near Glastonbury, he fell ill and was diagnosed with terminal cancer. Since then it has been one medical thing after another. No opportunity to go off on his own. So now, as he is approaching death, we are riding the fine line between trying to grant him as much solitude as possible and protecting the space. I am trying to act on his behalf, in his spirit, with his character and wishes in mind. It is the least I can do. I am also trying to look after myself a little. These days are the most challenging of my life so far. And possibly the most rewarding too. I feel privileged in helping to support him to die in a way that honours his life, in these far from ideal circumstances. Though actually, strangely, they may be kind of perfect.
