He didn’t look too bad. He had lost weight from the time I had last seen him which was about six weeks ago. He was a bit slower to answer questions and he looked exhausted, but he didn’t look all that different. The lower leg ulcer looked worse, he had also developed a skin infection in his hip. He made it very clear to me that he did not want the infections to be treated. He did not want to go back into the hospital. He knew that untreated infection could lead to death. That’s what he wanted. He wanted to die as he felt he did not want to continue living after almost ten years of worsening pain. A decade of decreased function, of being unable to do the things he liked. He had been an active grandfather previously but he couldn’t do a lot of the things he loved to do with his grandchildren. Walking was difficult at times and he was worried about how his family were doing as he knew looking after him took a toll on them. He would never consider assisted dying but he wanted assistance from a higher power. He had been praying for his lord to take him.
I found myself having to really question myself as to what I was doing. Professionally I was promoting self-care to everyone at work, and to the audiences at the lectures I was presenting. I felt like a fraud at times as I wasn’t practising what I was preaching myself. I had to do what it said on my packet I had to stop and have a break for myself. That meant a stop to the blogging and the daily writing. It was supposed to only be for a few weeks but it ended up being three months, and it was okay. I’ve restarted things again but at a smaller scale. I started timing myself for ten minutes a day. I would write for a minimum of ten minutes a day and what would appear would appear and we would see how it all went.
I was back again, writing daily, posting to the blog daily and it felt good. I hadn’t realised how much I had missed the therapeutic aspects of the writing. Also the writing community engagement had been missing over the three month period. I was back in the swing of things again and it was good to feel more like myself again. Some of the pieces of writing ended up being work pieces or parts of assignments I was doing for online courses. Things started feeling too stretched last week and I had to release the pressure again. People all around me in the different parts of my life were struck down by non-Covid viral illnesses and I wasn’t keen to join them. Instead of writing I went to bed. Instead of doing 15 minutes of Duolingo Spanish I only did the bare minimum to maintain my run streak. No-one was going to reward me with a badge for least amount of sleep had in a week. Gamification of my own health wasn’t worth it, in the real world it’s not so easy to spawn yourself back.
I’ve had another short break from the writing and I haven’t beaten myself up too badly over it. I am back again today and will be back again tomorrow. It’s the accumulated efforts over time that add up. What am I writing? My dailies which will become blog posts, which will become who knows? And that is okay. I just need to use the writing muscles again. To reactivate the nerve pathways. To gather up my energy again and make something with it. Daylight savings, travelling between time zones in the past week, and general life stuff have affected how I lived my life in the past fortnight. Other things out of my control have happened and have had to be dealt with. It will all be okay. All we can do is keep on going. One foot in front of the other. One word in front of another. We’ll see where we end up. We’ll see what comes of it all. Take it easy on yourself. There’s a lot going on. Be gentle and kind to yourself.
Our gathered experience and that of other doctors told us that people with her burden of disease would not be expected to still be alive.
When she had been admitted it was thought she might only have days left to live.
She had proven us wrong over and over again in the past weeks.
How was she doing it?
How was she staying alive?
None of us could explain it with our science.
It would be up to experts in other disciplines to explain what was happening. Experts in fields such as survivalism, spirituality, true love, and gamblers who specialised in beating the odds.
It is rare enough for one person to beat the odds once, but for three different women to beat the odds three times, it might’ve been easier to win the lottery.
What did they have in common?
They were loved by their families. They did not want to die. They had life-limiting illnesses which would rob them of time too soon.
They were all mothers, two had children who were on holiday from school, and the other one parented a boy who despite marriage had yet to grow up.
What differences were there?
Two of them had almost died prior to their admission to our inpatient unit.
They all had different pains, the physical aspects which we controlled quickly. If only the non-physical aspects could be controlled as easily.
Two of them had poor appetites but forced themselves to eat. The other one was ravenous but had trouble swallowing.
One of them was too scared to leave her room let alone venture home. The other two enjoyed sunbathing and wanted to spend as much time at home as possible.
Two of them wanted to cling to life for as long as possible. They were willing to do anything to stay alive. The other one had been approved for assisted dying but might or might not go through with it. She just wanted to have the option in case her suffering became intolerable, by her definition.
Two of them held on to hope and celebrated every little victory. The other one had made difficult but practical decisions for the shortened future she had accepted.
One of them had lost her mother many years ago. Another’s mother visited often but disagreed with her use of medications to prolong life. The third mother could not bear to face her daughter’s harsh reality and refused to fly over to meet her.
All three had deteriorated during their admission, making us think they were approaching their end of life. They had all recovered again to some extent, but their overall condition continued to fluctuate wildly.
What was going to happen next?
Impossible to predict, but time would likely declare the outcome for each of the ladies over the next days.
palliverse.com 