It is February in Glasgow, and through the window of the relatives’ room I can see the cathedral. All lit up against the dark night sky, its beauty for a moment replaces the sadness in my heart. Just a stone’s throw away, my precious dad is ‘sleeping’.
This is the sleep partly induced by the syringe driver which has morphine in it. It is connected to my dad and it is necessary because what is important now is that he suffers no more.
Who would have thought that at fifteen years of age his fate was already sealed? An apprentice electrician on the shipyards, just a boy who loved both playing football and watching it.
My dad would in days to come talk about his fellow workers, who would play football with pieces of asbestos. They were blissfully unaware of the dangers. He would become quite angry as he recalled that once the dangers of asbestos had been realised, he was told if symptoms did not show in the twenty years since exposure he would be clear. It was sixty-five years later it reared its ugly head.
As my dad was told after an admission to hospital, he had indeed been affected by asbestos. He was thought to have pleural mesothelioma, a cancer caused by inhaling asbestos fibres. Initially when I heard my dad’s probable diagnosis I thought about the other men and women who came into contact with asbestos on the shipyards. For some perhaps a trade they wanted to do, but for many others a job taken because of the need for work, a job for people who didn’t get a lot of chances in life. My dad had wanted to be a journalist. If he had had the chance to do that would he have met the same fate?
A disease people didn’t talk about
In my career as a nurse I had looked after people with cancers; this cancer, however, I had little knowledge of. I remember talking to a junior doctor on my dad’s ward at Glasgow Royal Infirmary and explaining that it seemed to me that this was a disease people just didn’t talk about. It is too horrific.
Those were dark days, and as a family we tried to support each other. The specialist nurse from the palliative care team was supporting my dad and the rest of us nearly every day of his last hospital admission. I often found myself wondering how she coped with her job. I left nursing two years ago for personal reasons and there was much talk with regard to the lack of compassion of staff in the NHS around that time.
If we expect nursing staff to do a good job and not suffer from ‘burnout’, they should have a level of pay that allows them to have a life outside their work. By that I mean being able to eat, pay rent, perhaps even having an interest outside of work. We were shown compassion many a time by the majority of staff. Porters, domestics, nurses, auxiliaries and a very sympathetic consultant. He met with us and made us feel he had time to answer our many questions and even though the news he had to deliver to us was bad, he still managed to support us.
Compassion, comfort and dignity
There was talk of getting my dad home, but he had taken a turn for the worse and that looked impossible. When my dad was discharged home in October, the mesothelioma specialist nurse had tried to get him to speak to Marie Curie nurses who would be involved in caring for him. Even though he had supported the charity for many years he felt that this was a signal that his time was up and he wasn’t ready for that. He finally agreed to them coming to see him just days before his last hospital admission. Alas, he was admitted to hospital one Monday and they were due to visit that Thursday. It was not to be.
At one point we were asked what we thought about my dad being transferred to a hospice. I have never been in a hospice but I have heard a little about them. As a family we all agreed that the nursing care would be no different, and as all his current nursing staff knew my dad we felt to move him would not be in his best interests. So his last days were spent in a single room in Glasgow Royal Infirmary.
Much as we had hoped to have my dad back home, I wonder if as a family we would have coped. The nursing care that he needed, and the strain that would have been put on our mum, who has her own health issues, I fear would have been too great. To the families who manage to do this for their loved one, I absolutely salute you. My dad was a very proud man and I was allowed to be his daughter, not his nurse, and I know that is what he would have wanted.
In the Accident and Emergency department on a previous admission, when I asked for the nurse to help him to use a urinal, I honestly thought that I must have grown horns by the way she looked at me. For the dying, in the end, I believe comfort is the most important thing, but we must strive equally to preserve dignity.
My dad was a man who believed in equality and fairness. Recently there have been moves to compensate women with mesothelioma. In doing the simple task of washing their partner’s, dad’s or uncle’s overalls they have been exposed to asbestos fibres and suffered this disease. Surely these women must be compensated?
My dad lost his voice a few days before he died, caused ultimately by this illness. We found ways to communicate, and we became his voice. It is my hope that in writing this I can help in some small way the people who are struggling to have their voices heard.
There is no cure for this disease. Research is ongoing. A woman in Derby, Mavis Nye, has had the disease for eight years, whereas most people with a pleural mesothelioma diagnosis die within one year. I am sure Mavis is important to her family but she is also very important for the ‘mesowarriors’ as she calls them. Mavis has an immune system that fights this cancer. This provides hope for all the people diagnosed with this disease.
Each year 2,500 people are diagnosed with mesothelioma in Scotland. All public buildings that were built before the year 2000 will have asbestos in them. More teachers and other public sector workers are being diagnosed with asbestos related diseases. It is imperative that there is more education and awareness surrounding the care of buildings which contain asbestos.
Featured image: Glasgow Sunset by Jimmy Pigg Creative Commons Licence CC By-NC-ND 2.o
This article was first published on Labour Hame