It has been a normal week. Nothing dramatic has happened to us. Admittedly, there are plenty of small irritations in our lives which cause discomfort. But that is normal too. The smooth flow of life without setbacks is an illusion, perpetuated by lifestyle product advertising. Like most people, we do our best to live with the irritations.
My dearest T is getting accustomed to her breathing machine and it’s helping her a lot, although some nights it works better than others. The problem seems to be with the fit of the mask. During sleep it can be partially dislodged, meaning that the flow of air goes across her face rather than into her mouth to keep her airway open. On the bad nights she hasn’t slept properly due to apnic episodes and is very tired in the morning. She is experimenting with different pillows and has requested a different mask from the hospital.
I am still waiting to see the surgeon about my diaphragm repair. He agreed to delay the surgery until after my scan result was known, but also said that he wanted to see me again before the procedure. That was the best part of a month ago. I’ve rung his secretary to find out what is happening but she doesn’t know and wasn’t able to find out as the surgeon was away. So I feel I am dangling again, having to prepare myself for another hospital admission but having no idea when.
I ought to be used to this situation, given how often I’ve been here over the past six years. But I still find it frustrating and disturbing. As a cancer patient in the NHS, you always seem to be inbetween scans, treatments and reviews. It’s more a permanent state than a transitional one.
When I was first diagnosed, surviving to five years was the big objective. But that is an artificial target. Statistics on cancers and patient survival are only kept for five years. And many cancers, mine included, are known to recur significantly beyond this deadline – even decades later. So you are never really free of the threat.
But surviving is what matters. All around us are many examples of the opposite: from famine in four countries in Africa caused primarily by wars, to the sudden deaths of family members, friends and acquaintances.
A group from Concern recently came back from the Central African Republic. It is the poorest country in the world, according to UN statistics. This large country, eight times the size of Ireland, has just 5 million people. They reported that outside the capital city there is no basic infrastructure: no roads, no water and no electricity. Most people get by in small-scale subsistence agriculture. There is no famine at present, but they are stuck in grinding poverty with many endemic diseases and virtually no medical care. The country’s mineral resources have been sold to the Chinese by the ruling elite, who also want to be the sole distributors of international aid. They don’t like NGOs. And aid is often distributed only at election time. This sort of fragile state is so easily pushed into famine by war, as has been happening in Somalia, Yemen and South Sudan.
Earlier this week I learned of the untimely death of friend, who I was close to when I lived in Glasgow, but who I lost touch with after I moved here. His partner, expecting him to be at home, had rung him but got no reply. After several attempts she went round to the flat and found him lying on the floor, as if asleep. He had died from a heart attack.
Having to live with a series of small irritations is the stuff of normal life. It means you are alive and kicking. Making the best of your situation, with humour and resilience is what matters. I’m trying to get better at it. I hope that as I progress along this road, bigger problems might become a little smaller.