HIV/AIDS…….Lest We Forget…. Part II….The Angel of death passes over…

Part II……The angel of death passes over….

November, like rosemary, is for remembrance….

Mark Selly died just after Christmas. He was buried in a tiny medieval church on a grey January day.

In the midst of so much death there is often one that is emblematic for each survivor. For me that symbolic death was Mark’s and, as an eternal flame marks a grave, my memory of him illumines a dark past where so many were forever lost….

For six months, the last months of his life entirely consumed my life …visiting Mark in various hospitals…often three times a day…buying food to tempt him to eat…talking with his family…. bumping into mutual friends at his bedside…writing out his Christmas cards…collecting his benefit from the post office in Hammersmith miles from where I lived…. holding his hand….making him laugh… crying on the way home in the taxi….talking to the other patients in the ward when nurses were cleaning Mark and his bed after any one of the innumerable accidents…as we all called them… jokes with other families in the kitchens as we all fought to use the microwaves…putting tinsel on a ward Christmas tree… the camaraderie of death fittingly fitted around my job and my ordinary life… and through all this inevitable journey Mark smiled…always pleased to see me…pleased by the smallest kindness…

At first his life ebbed and then again flowed; then it ebbed and then again ebbed further off, until, gradually it gently ebbed away…

We all went to see him on Christmas day…. he was in bed, frail, emaciated, still smiling, grateful. When we arrived he was taking Holy Communion, wholly angelic, wholly believing, his eye caught our shadows… he saw us…then he smiled…the elusive smile…it had come to mean so much to me…

Afterwards I kissed him goodbye on the forehead. I never saw him again. I wasn’t with him when he died. I found it hard to forgive myself for that…perhaps I never have…

Afterwards life went on…

At first I’d shared my positive HIV test result with only one other person besides Mark. The number who knew gradually grew but it never grew to include my family, all my friends or my employer or work colleagues….My life divided into two parts….the one where I really was….full of anxiety and tests and waiting for their results…the results showing a slow dropping off the my T-Cell count….and one where I pretended everything was alright…a self-imposed duality that over time took an enormous emotional toll.

Like many, I volunteered for various medical trials…in the hope that this would help others…I was now well aware there was nothing much to be done for me…. I hoped it wouldn’t be too awful when it came. I took refuge in life’s fleeting pleasures…and perhaps too much alcohol and and perhaps too many recreational drugs. The weekends kept the creeping reality from overwhelming me…..

All the medical trials involved giving blood, as Lady Macbeth remarks of poor dead Duncan, I hardly believed I had so much blood in me…There were also all the additional hospital attendances…often squeezed into a lunch time….or after work…I had brain scans and all sorts of other stuff for Medical Research…and amongst them was a trial combination of AZT with either DDI or DDC…two new drugs recently approved for trial in the USA but not yet available for prescription. I signed the papers and I was put into the DDI blind trial….

The drug’s side effects were pretty disgusting. The tablets were large white and chalky and they made me vomit on occasion. There were other, less pleasant, side effects….holding on to your dignity, let alone holding down a job, when you have gas and diarrhoea isn’t easy…

The relentless fall in my T-cell count slowed and hovered at 200.

This was the first sign that there had been some sort of breakthrough. About a year later…the trial was closed and dual therapy became the treatment. At this stage there were other drugs also coming into use but these were delaying the inevitable…HIV eventually became resistant to all therapies. The tablets also had to taken on a very strict regime and smuggling them into the office for example…keeping them in a fridge…hidden…was another small step in a larger world of subterfuge….

The haemorrhage of death was staunched. But some did not respond to dual therapy…there apparently was more than one HIV virus…but those even with the more benign forms still gradually became resistant to the therapy. What was more…another more sinister aspect of the virus was revealed by those surviving. It turned out that whilst dual therapy stabilised T-Cell counts…and the new fangled viral load test….HIV continued to do permanent damage both to major organs and to the functioning of lymph systems generally. HIV related cancers and kidney and liver disease proliferated in HIV positive patients. And a new killer appeared on the block….HIV related TB. It wasn’t yet understood that these were in fact related to the virus itself and not merely a consequence of auto-immune deficiency….

The first protease inhibitors were available in 1996. This was an Annus Mirabilis. Some literally who were blind could see, some who were in wheel chairs could walk; the deaf could hear and it was miraculous…

Though some strains of HIV were resistant to protease inhibitors….these drugs were, unlike dual therapy, remarkably successful in halting and then reversing the decline in T-cells but more importantly they also prevented HIV from attacking major organs and the lymph system….but these properties were not immediately obvious…and in the UK those stable on the dual therapy of anti-virals were generally kept upon it…as the protease inhibitor was still viewed as merely another option to be employed as the HIV virus inexorably built-up resistance to each and every drug therapy….

So long term survivors went on with a therapy which in fact wasn’t offering as much protection against virus progression as initially understood….or hoped…and it would be another five years before this began to become clear…

My T-Cell count resumed its gradual decline and now hovered at about 100 and I was also put on Septrin to prevent PCP – the killer pneumonia….

But I had so far survived…and beyond the inconveniences I learnt to hide… recurring shingles and the unrelenting tiredness…that I learned to work through…I was lucky to be alive and really quite well…

So when I flew off to visit my lifetime friends Ralph and Manfred in California in 2001 I saw myself as a lucky survivor…..

The angel of death had indeed passed over and I lived to tell the tale….although I was living a lie…I was alive and that counted for a lot….

My family had been spared the ugly truth though they lived with its uglier fears….still now perhaps I would never need to burden them with the lonely certainties from which I had tried to shield them for as long as possible. My survival was its own reassurance…

We drove down through Central Valley to Palm Springs and then on to Las Vegas….that city of fortunes and the fortunate. Our first morning there I woke up not feeling great…bloated…maybe too much time in the back of a car. As the day passed I felt worse and worse. If it wasn’t for Ralph’s sister Nancy….there might well be nothing more to tell you…I was quickly on my way to the Sunrise Hospital. By midnight I was on my way to surgery….literally at death’s door. My chances of survival were not great…my intestine had already ruptured….and my immune system wasn’t best placed for the trauma of infection and major surgery. In addition there was one of two possible causes of the rupture…a chicken bone had perforated my gut…or I had cancer.

Within hours of the surgery I had a call from my dearest friends Andrew and Ian. Andrew, the most gentle of giants, had himself recently struggled with treatments for a brain tumour and had had to take early retirement. He said to me that whatever needed to be done they would help me with money…he offered me a portion of his pension lump sum. That call left me in tears. Once again I was struck by others’ selflessness. There should be a medal to honour that most special of human gifts….

Some leave their hearts in San Francisco…I was destined to leave a foot of intestine in Las Vegas. By the time I flew out of the city I also knew I had Large B cell lymphoma. This was HIV related cancer and the survival rates from it were virtually nil….

My doctors told me I had probably weeks left to live… It was a beautiful warm afternoon in May and even in London you could smell spring’s sweetness in the air….it was a Friday and that night, I went out to a bar in Soho with Peter…by the end of the weekend I’d planned my funeral and finished my will….yet everything seemed strangely the same as before…

I went on chemotherapy soon thereafter…There had to be a pause to allow the surgery to heal before the cancer treatment could commence. I decided to work through this….probably one of the worst and most consequential decisions of my life. I was rushed into hospital for a second time…the chemotherapy was too strong and wiped out my immune system. Now I understood what being sick really felt like… and also for the second time in a month I nearly died….as I lay in bed in the hot, hot ward…watching other sick patients shuffle to the toilets….for the first time I actually thought it might be a relief…not to….

There is a wonderful movement in the Dvorak Requiem….the Offertory, Domine, Jesu Christe, Rex Gloriae…one of those great tunes…. at the time it kept going around and around in my head….I was probably running a high fever…but it was so comforting…. now whenever I hear it I want to cry….sometimes I think maybe it kept me alive…I know that’s silly… a vain conceit…but it’s true… in my head….I heard that wonderful tune…

To be continued…..
Next week, Part III…..I am your healer….

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