October 29, 2013
I know you're anal retentive and this is really shitty news but the bottom line is really a pain in the ass I'm afraid ... you have anal cancer but after the treatment all your problems will be behind you.
-- Collated from a cancer jokes site
Tasteless? Yes and not that funny either; but my oldest friend often uses the same gallows humour to help deal with reactions to the news he's heard not once but four times in total. John will freely admit he's not got a great track record with cancer but the fact that he can say that, after three different cancers and three years of fighting, means that his track record is actually pretty damned good.
It's a long and complex story that deserves more than a few thousand words but it's one worth telling because although people with HIV have a frighteningly higher risk of getting anal cancer than other people (up to 90% more chance according to many estimates), most LGBT people have little or no idea of what that entails. It's a story without end because John's still on the cancer treadmill, with no guarantees but still with a resilient determination to beat the tumours that should keep gay men awake at night.
When I heard the latest news my first thought was: "Okay, at least you'll know what colour cancer ribbon to get." How many of you thought brown? Doesn't that sum up how we feel about anal cancer; a cross between nervous giggling and butt-clenching horror? In 2013, the "C" word is still taboo for many people. Very few diseases inspire such a gut-wrenching fear for the future and nobody can put themselves in the shoes of someone who's just heard that they have cancer; no one. It's one of the most depressing pieces of personal medical news you can receive and perhaps even ranks above being told you're HIV positive. John's had to sit through both announcements but this particular cat has the legendary nine lives, or at least I hope he does because he's already used up a few.
In the darkest years of AIDS, when it seemed that that diagnosis alone was purely and simply a death sentence, patients met the most common cancer that came with it with an ironic shrug of the shoulders. What could be worse than having AIDS? A skin cancer on top was hardly going to change the outcome. However, the human herpesvirus-8 (HHV-8)-related Kaposi's was also a final irony for many; a series of purple patches that identified them to the rest of the world like a Nazi pink triangle. Many people looked in the mirror and saw the disappearance of fat and muscle, the sunken faces, wild eyes and pallid skin as being bad enough but clutched on to the belief that externally, other people still couldn't be sure that they were victims of AIDS. Kaposi's removed the doubt completely and AIDS patients felt marked as much as if they were wearing badges proclaiming their fate.
It was first of John's four cancers and sneaked in some time after his HIV diagnosis and initial treatment, beginning when he was admitted to hospital after a long period of high fevers. He and his friends had seen how Kaposi's could ruin a beautiful face and in some cases spread across the body. But in his case he was lucky enough, if you could call it that, in that his Kaposi's was limited to a few lesions on his arms and legs and none on his face.
This was a man who had kept his diagnosis of HIV to himself for a considerable period of time and it was only looking back in retrospect that I realise how hard that must have been; watching other people wrestle and finally succumb to the disease while keeping that secret to himself. Kaposi's must have been a constant fear, if only because that would have revealed his secret just as surely as hiring a sky plane advertiser to do it for him.
The Kaposi's was almost a side thought in the midst of all the other health problems but nevertheless it was a cancer and it was his first. Looking in from the outside, I remember being amazed that those lesions disappeared but for some people that's exactly what happened. It seemed odd then and still does, that a cancer could cure itself so to speak but the lesions did disappear.
Surviving HIV and full-blown AIDS and coming back from the brink of death is for most people enough of an achievement to reasonably assume that nothing worse could be thrown at them. For twelve years John never really gave cancer another thought. There were ups and downs involving all the things that normal people go through relating to work, relationships and fun. Yet although he used to say that being HIV positive, and having a dramatic medical past, never left his head even for a single day, there was no reason for him to think that the rest of his life would be any different to any other positive man on the planet.
In 2010, however, things changed dramatically. In June 2009, he had gone to his home doctor with what seemed to be a swelling in his groin but was told it may be an infected, in-growing hair, or one of those annoying abscesses or infected boils that happen from time to time. He was referred to his HIV specialist to take a look. The HIV specialist didn't think there was anything to worry about and sent John away with the instruction to keep an eye on it.
That was the problem. The specialist repeatedly told him there was nothing to worry about and for a year, nothing was really done about the lump in his groin, despite John feeling that there was definitely something amiss.
When I went to the home doctor in February to look yet again at this wretched lump, he said that the HIV specialist should definitely arrange a biopsy, even though he'd said there was nothing to worry about at my last appointment and a follow-up letter to the home doctor had repeated that. So I went to the specialist and pushed for some action. He finally sent me to the surgeon but was still more or less certain that there was nothing going on. He even put the fact that I'd insisted, at the top of his letter to the surgeon; as if to absolve himself from any responsibility for a wasted appointment!
Well, it turns out that they've found carcinogenic cells in the lump!
As far as I'm concerned, it's three strikes and out for the HIV specialist! I just hope that it doesn't eventually cost me my life because of his prevaricating and wrong diagnosis. I want to know what the home doctor thinks and if he thinks that a cancer surgeon in that hospital the right choice is, or whether I should go to an oncologist elsewhere for a second opinion. I trust my home doctor -- he's a good guy.
The next piece of news he received was that the spread of the cancer to the lymph glands had begun at least a year before, which meant that the original tumour, wherever it was, had existed longer than that. That didn't improve his attitude towards his current hospital and the HIV specialist one bit. Speed is often of the essence in cancer cases; the quicker it's found the greater the chances of it being defeated.
To cut a long and painful story short: It turned out to be a sort of bladder cancer that had lodged itself in the tubes between the bladder and the prostate. You have to remember, the investigations involved needles and tubes being poked and prodded into all the orifices you wish to keep to yourself and pieces of tissue being snipped out of organs you had heard of but quickly learned played vital roles in cancer investigations for men. He had to accept that being embarrassed or uncomfortable during these tests was a bit pointless and that you shouldn't try too hard to hold on to your dignity. You have to give yourself up to the medical machine and put your trust in the skills of people you don't know from Adam. Delayed or cancelled appointments, wrong assumptions and above all the endless waiting made the process that much worse and meant that stress levels were going through the roof. He had no choice; the system wouldn't be hurried but we all began to get the feeling that the last person of importance in the chain of events was the patient himself.
Eventually, the punishing courses of chemotherapy and radiotherapy that ensued took their toll. John was at his lowest ebb since all those years ago when he was so sick with AIDS. He felt like an old man and looked and walked like one too, with severe back pain and constant exhaustion. The only thing that kept him going was the fact that the lump in his groin was visibly shrinking but the fact that he couldn't wait for the old guy in the window bed to leave hospital, or pop his clogs so that he could get a bed with a view, did give us the giggles.
It didn't go well yesterday. During the morning I got an attack of the hiccoughs which was very tiring. At 17:30 I was done with the last infusion and tried to eat something but couldn't keep it down. You begin to realise what a deep effect chemo has on your body. After a few hours' sleep, I woke up with an enormous thirst and of course the hiccoughs returned. Slept again and then the nurse was at the door with the next post-chemo injection. Do you realise that stuff costs 1,500 dollars each time! I felt terrible the whole day and I'm not looking forward to the next few days -- think it'll only get worse the longer it goes on.
And after a few radiation sessions:
I think I'm really having problems from the radiation now. My intestines don't feel good. I often feel sick in the mornings and throw up even a cup of tea. In fact I have to vomit before I even eat or drink anything. Oh well, just three more sessions to go.
Finally, at the end of 2010, he could see the light at the end of the tunnel and the cancer was thought to be clear. It had been an exhausting year. Nobody can prepare themselves for what happens when you step on the cancer treadmill and although you know beforehand that it can take a long time and the side effects can cause serious limitations to your daily life, nothing prepares you for how wearing it can be both physically and mentally. He'd been let down and misled by a specialist he should have been able to trust and he'd been made to wait for unbearable lengths of time for the machine to get rolling but at the end of the year, after all the trauma, he at least felt that it was over and he could slowly go back to his old life.
Unfortunately, that optimism was misplaced and two years later, he was to go through the fight of his life.
Read Dave's blog HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck.