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Anal Cancer: One Blow After Another

Part 2 in the Blog Series "Anal Cancer: A Gay Man's Nightmare"

November 1, 2013

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Cancer is a curious thing ... nobody knows what the cause is, though some pretend they do. It's like some hidden assassin, waiting to strike at you.

-- W.H. Auden


2011 Bureaucratic Injustice

Dave R.

Dave R.

It had taken the best part of 2010 to finally ascertain what sort of cancer John had. There were reasons for that: they'd called it bladder cancer but in fact it turned out to be a cancer found somewhere between the bladder and the prostate. The communication ran along the lines of, "Hey, if we tell the patient he's got bladder cancer, he knows roughly which area of the body we're talking about"; a condescending approach to say the least. Its treatment had been an unnecessarily long process, with misdiagnoses, delays, cancelled or forgotten appointments and the careless attitude of an HIV specialist who brushed him off with platitudes, and after all that ... the treatment began!

As anyone who has had cancer knows, chemotherapy and radiotherapy are experiences that are difficult to describe. Even people who are close to the patient, and can see the physical effects, cannot possibly imagine what those two treatments do to a person, both physically and mentally. Having emerged from all this at the end of 2011 with somewhat vague assurances that the cancer was gone, John turned his frustration with the process to setting a few things straight. He was angry and justifiably so. The cancer patient has no choice but to surrender his or her independence and dignity and put trust in the skills of the experts; but when the specialists let you down and you're not taken seriously, the process becomes ten times more difficult. However, John knew that he would be doing himself a disservice if he put up with it as so many are forced to do. As Maya Angelou said: "Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean."

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In the spring of 2011, with the support of his home doctor, John decided to put in an official complaint via official channels, regarding the repeated insistence of the HIV specialist that there was nothing wrong and that he could ignore the growing lump in his groin. A year's treatment of a cancer that had already spread to the lymph nodes in the groin had been lost because one man couldn't be bothered to investigate further. He knew from the beginning that there was little chance of any concrete success and he knew that at best, the specialist would get an internal rap on the knuckles, because when it comes to complaints like this, hospitals and their specialists close ranks like clams on the sea floor. In Europe, the litigation culture is nowhere near as strongly developed as for instance in the States; there was little chance of a court case or damages but that wasn't what John was looking for anyway. He just wanted an official admission that things had gone wrong and action taken to make sure it wouldn't happen again. Realistically, there was little chance of even that small gesture but he was angry enough to go ahead anyway.

He had a list of 57 instances where his treatment had been inadequate.

I'm not a hysterical patient. I agreed to all the treatment and put all my energy into that because the prognosis was good. I know that deep inside, I went through that hell and I'll have to live with the ensuing trauma. The controls and checks in the coming years will ensure that I never forget but the point is: if I'd been properly diagnosed in the first place, the outcomes would undoubtedly have been far less serious.

All his complaints had to be presented to a complaints commission at the very hospital in which it had happened, which hardly inspires a feeling of impartiality and in the end, his fears were justified. In July, he received the official conclusions from the complaints commission and as he'd expected, his complaints were rejected. They found that the HIV specialist had acted according to his own expert opinion and as there were no official guidelines regarding swollen lymph glands in HIV patients, there was no case to answer - the man had acted to the best of his ability. They did acknowledge that the specialist should have followed up after hearing the final diagnosis but basically 'these things happen' and they couldn't find any reason for neglect on his part. John took it all in his stride; he had expected nothing else but at least he'd got it out of his system and exercised his right to justifiably complain. Needless to say, he immediately changed his HIV specialist. Somewhat resigned to the situation, he said, "I'll never blindly trust so-called expert opinion again but I'll rely on my own gut feelings and instincts from now on."

Little did he know that he was going to need those gut feelings more than ever during the next two years.

During 2011, he was still recovering from the year before. There were checks and controls which seemed to show that the cancer of the bladder area had disappeared but he was experiencing all sorts of 'plumbing' problems. Problems with urination, bladder and urinary tract infections needing many visits to the urologist and the oncologist, plus the normal HIV check-ups and of course the usual poor communication between departments and crossed lines, but he was getting used to those. In August, he even had an inflamed haemorrhoid removed, which seems a minor and common complaint but was an early indication of the 'war zone' that the following two years were to bring.

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