November 1, 2013
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
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."
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.
Early in 2012 John started to have problems with a lump in the anus. At first he thought it was another haemorrhoid problem. It was often irritated and sore and stood in the way of bowel movements and he made a few trips to the home doctor to have a look. After trying creams and even an antibiotic treatment to deal with what looked like an infected area, little had changed and the doctor sent him to a surgeon to get a second opinion. He received a diagnosis of a cutaneous skin tag, which is a benign tumour that people commonly get in areas where there are folds of skin. In this case, it was a 'thrombosed' skin tag which meant that there was a build-up of blood in it but this is not too unusual and normally removal of the tag removes the problem also. So John was set for another minor operation with the knowledge that material would be sent away for further investigation. On the surface of it, little to worry about.
In May 2012, the skin tag was removed but while he was waiting to go home, the surgeon came along to tell him that not everything had been removed. It was apparently quite large and they were worried about the chance of incontinence if they'd taken the whole of it away. It was after all on a fairly critical part of the body.
It took 10 days for the results of the biopsy to come back but John wasn't particularly worried -- it had all seemed like a fairly routine procedure.
Unfortunately, the pathologist's report showed that the tissue had enough malignant cells to indicate a first-stage anal carcinoma (tumour, cancer). This time the results were faxed through to the specialist cancer hospital with the country's best cancer experts. An appointment had been made with a radiologist and John was told that the treatment would consist of radiation and that the tumour was eminently treatable, without damage for the anus itself. The first appointment in the diary would be the following day.
The fact that things started happening quickly meant that John had little chance to dwell on the news. Of course he was shocked, scared and dreading what was to come but a lot of the waiting that had characterised his bladder cancer was eliminated by speedier organisation and that meant that he had little choice but to once again put his faith in the system and see what happened.
It's a different sort of cancer this time and the treatment should begin between in the next two weeks, probably after an appointment with the stomach/intestine/liver specialist. In the meantime, I have to have a special CT-scan of the exact area their going to irradiate. The doctor thinks I should be done by the first week in September.
There were once again administrative problems with the specialists at the old hospital. The urologist there was still responsible for cystoscopies and other tests regarding the bladder cancer but when John called several times to ask if those tests and checks should still go ahead in the light of the new circumstances, nobody rang him back and frustrations began to build up once more. John ended up having to lose his temper again to get any form of response; something which a patient beginning treatment for a new form of cancer, shouldn't be worrying about. In the end, the urologist called him back with the usual excuses and he was allowed to skip the next control and was wished the best for the difficult times to come but it gave him every reason to cut all links with that hospital and let the cancer centre take over. The problem was that irritations like that cause you to begin to suspect everything:
At the moment, I've got the idea that the diagnosis of a thrombosed skin tag was made too hastily. Maybe they shouldn't have cut into it at all and just sent biopsies away for further study. What if they stimulated the cancer into action and have made it worse?
He now had to face the investigations to find out if the cancer had spread to other parts of his body and that involved various tests and scans. There's not much point in listing all the various investigations that take place -- it just doesn't mean that much to the casual reader but there were a lot and because they were working quickly, it involved a couple of busy weeks travelling to the hospital to have scans, echoes and blood tests. It was exhausting and John didn't know whether he was coming or going, especially as they won't give anything away until they have an overall picture and can tell the patient exactly what's going on. Just to give an idea of how intensive the process was, here's how he described a PET-scan he had:
Your whole body is scanned. You're injected with radioactive glucose and because cancer cells burn off more glucose, they should be visible on the scan. You can't eat or drink for 6 hours but in the two hours leading up to the scan, you have to drink a litre of water (no milk, sugar or sweeteners) and just before the scan you have to go to the toilet and empty your bladder.
Actually, apart from some suspect activity in the stomach, the PET-scan didn't reveal too much that was alarming but he needed to have a gastroscopy to look in the stomach to see what was going on there. This mean that other echoes, x-rays, blood tests, biopsies etc were postponed until that was done and so it went on. Test after test and all the while, you know you have anal cancer, you know it's going to be treated but there are a thousand questions going round your head and basically you just want to close your eyes and let it all be over. Not only that, but John knew what he was heading for and knowing how hard the treatment was, made it seem that he was living through a recurring nightmare.
Read Dave's blog HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck.