Tell Me I'm Okay

by David Bradford

  ‘Once a country boy, always a country boy,’ he said ruefully.

  He was looking for a double-decker bunk bed to furnish the place he was going to rent. I am puzzled now why he wanted this; it seems an odd requirement for a single man with one visiting male partner. By chance, we had a bunk bed in our back room we hardly ever used, so we were happy to let Trevor have it. Our last meeting with him occurred when Trevor and Derek arrived at our house, and carried out the bunk bed to a trailer loaded with all his worldly possessions for the trip out to Horsham.

  We never saw Trevor again. Derek told us he died at home some months later. I’ve often wondered if Trevor might have survived long enough to benefit from effective combination anti-HIV therapy in 1996 if removal of his appendix had not been delayed. Many patients diagnosed with very early HIV infection and high T cell counts in 1989, and in the years after that, did manage to last out until the coming of effective treatment. In pushing Trevor to allow disclosure of his HIV status, I was following established medical practice at the time. In hindsight, he would probably have been better managed if the surgical registrars had remained in blissful ignorance.

  I wrote letters of complaint to both the Royal Melbourne Hospital and Prince Henry’s Hospital about the poor treatment meted out to Trevor. Their replies, while mildly conciliatory, were basically supportive of their medical staff. I raised the matter at the next meeting of the Australian National Council on AIDS, of which I was a member, and I wrote to the President of the Royal Australasian College of Surgeons, urging him to ensure surgical trainees were made more familiar with HIV/AIDS management during their training. There was little more I could do. Over the next decade, little by little, the wider medical establishment came to adopt a less discriminatory and more rational approach to patients living with HIV, largely because of cases like Trevor’s. Trevor really was a beautiful and exceptionally talented man. Michael and I truly mourned him, although our sense of grief and loss was minor compared to Derek’s pain and suffering.

  * * *

  2030–50 mgs is the usual adult male dose.

  21‘Suck and drip’ is a method of non-surgical treatment to rest the gut, whereby a naso-gastric tube is inserted and then attached to a suction apparatus to keep the stomach empty of fluids, and an intravenous infusion is set up to keep the patient hydrated while she or he is taking nothing by mouth.

  Chapter Thirteen

  All My Patients

  I honour all my HIV patients. They were unique human beings who faced this terrible disease with their own inimitable brand of courage, denial, rage, madness, bravado, black humour, cynicism, outrageous behaviour, or quiet acceptance. It was a rare privilege to have been their doctor. I pay tribute to those who died before they could benefit from today’s effective treatments, and especially those who took part in clinical trials that furthered our knowledge, even though they knew it would bring them no personal benefit.

  The patients I found most difficult to handle (and to forgive) were those who not only threatened to ‘take others with them’ by having unsafe sex with their partners, but who actually attempted to carry out their threat. I remember one patient of mine particularly. He boasted he was always the active [i.e. insertive] partner in anal sex. He argued with me vehemently that if any gay man he met was willing to let him fuck him without a condom, then it was no fault of his. He felt no responsibility to tell him his HIV status. He said, ‘If after all this time, and the publicity about AIDS, they are willing to have sex with me without a condom, and let me cum in them, then that’s their look out. I’m going to die soon; why should I deny myself any pleasure I can get?’

  Fortunately, such patients were rare. Health Departments gradually developed mandatory reporting and counselling arrangements to assist doctors dealing with such recalcitrant individuals. My irrespon-sible patient died a short time later, as he had predicted he would.

  Doctors are only human. The Melbourne gay doctors in the first decade of the AIDS epidemic were no exception. We felt the loss of all our patients acutely. However inevitably, some patients get past your professional barriers and touch your heart more deeply than others. For me, Martin was just such a one.

  Martin

  Martin arrived one day, entirely unannounced, at the Carlton Clinic asking for ‘a bit of a check-up please, Doc’. He said some of his friends had recommended me because they thought I was ‘a pretty cool dude for a doctor’.

  Martin was just twenty and doing a TAFE course in hairdressing while an apprentice at a large salon in Carlton. He had grown up somewhere on the Bellarine Peninsula, southwest of Melbourne, and had gone to school in Geelong. After finishing high school, he had taken the earliest opportunity to get a job in Melbourne, and with a sigh of relief he headed away from home, bound for the delights of the big city. Martin looked a total innocent, although the sexual behaviour he later recounted to me belied that first impression. He had spikey, highly gelled black hair, a flawless complexion, fashionable clothes, unbelievably even white teeth, an engaging smile, and wide blue eyes. He was definitely in my ‘stunner’ class of young men. I prayed inwardly: ‘please, not another HIV positive!’, as I established rapport and asked about his social and sexual history.

  Yes, he liked men rather than women. Yes, he had been with numerous male sexual partners since he arrived in Melbourne six months ago. Yes, he practised safer sex ‘most of the time’, but there had been a few ‘slip-ups’ in the past six months. Yes, he knew about HIV and other sexually transmitted infections and yes, he was, ‘mostly a bottom, Doc’. No, he had never had a check-up before, and no, he never used recreational drugs apart from the occasional joint if a friend managed to get hold of some marijuana.

  ‘How’s your health at the moment, Martin? Have you noticed anything abnormal?’

  ‘Only my mouth, Doc. It just doesn’t feel quite right. For the last couple of months I’ve had this lousy taste all the time. But I guess I’ve just been sucking too many cocks lately.’

  Full of foreboding, I asked him to get on the couch for examination. I found white unblemished skin, from which the pervading and tantalising scent of palm-olive soap exuded; dark curly hair under his arms and in his pubic region; firm pectorals; a clearly defined abdominal six-pack, as Martin admitted to being ‘a bit of a gym bunny’; and absolutely no abnormal physical signs, except for a hard line of unmoveable white exudate (firm plaque) along the edges of his tongue.

  ‘I’m glad you’ve come for a check-up, Martin. How do you feel about having an HIV test as well as the usual tests for STIs?’

  ‘That’s cool, Doc. I was sure you’d recommend it.’

  ‘How would you cope if the test came back positive?’

  ‘Oh, I guess I’d be a bit sad, but a couple of my best friends here in Melbourne are positive, so I reckon we’ll cope with it together.’

  I just knew his results would be positive. Martin had a positive swab from his rectum for gonorrhoea, positive blood tests for syphilis, and his HIV antibody test was positive too. The hard white line on the edge of his tongue was unmistakably oral hairy leukoplakia, a well-known HIV-related clinical sign. Martin took his diagnoses bravely, although my own reaction was far less unemotional. I struggled to keep the tears out of my eyes.

  ‘Never mind, Doc. Nearly every gay boy has to go through this these days. I’m not the only poor sucker. It’s the price of sexual freedom, I reckon.’

  We went through the usual routine – treatment for his gonorrhoea and syphilis, advice about getting any sexual partners he could remember in for testing and treatment (his memory was poor for most of them), blood samples for T cell tests, advice about healthy living, safer sex in future, coming back for three monthly monitoring. Martin was relaxed and happy about it all. ‘It’s a bit of a shock, but Doc, if you’re on my side, I don’t mind going through all this. You’ve been really awesome. I’ll be back in two weeks to check on my T cells. Thanks for everything.’

  With an ache in my heart I watched
him go. So beautiful, so young, so innocent, and yet so doomed.

  Martin’s T cell count was 280. He was already considerably immune deficient. But he was happy to take my advice on everything unquestioningly. His trust in me was absolute. It was hum-bling and very scary. He agreed to participate in the AZT trial for people with early HIV infection. Almost certainly he was assigned to placebo, as he had no side effects and his T cell count continued its inexorable decline. He saw me regularly and complied beauti-fully with the trial’s requirements. A year after diagnosis he showed up at the surgery complaining of extreme tiredness. He looked as appealing as ever, although I noted with distress that he had lost weight.

  ‘I’m finding it hard to get through a day’s work, Doc. I’ve had to drop going to gym. Being on my feet all day in the salon is almost more than I can cope with, and I just can’t concentrate on the TAFE lectures.’

  I examined him and found with a sinking heart that he had a firm lump in the right side of his neck. ‘Have you noticed these swollen glands in your neck, Martin?’ I asked.

  ‘Can’t say I have, Doc, but I have had bad nights lately. I wake up feeling very cold and shivery, yet I’m wet as if I’ve been sweating. It’s so bad I often have to get out of bed and dry myself with a towel and then go back to sleep with a fresh towel around me.’

  I explained to him that we needed to get a sample of the swollen glands in his neck. To hurry things up, I said I would ask a friendly surgeon at the Alfred Hospital to do it. While he waited in the surgery I rang and made an urgent appointment for him in the outpatient clinic at the Alfred. The results were soon through – handsome, innocent, naive Martin had developed non-Hodgkin’s lymphoma.22 The histology report stated that it was highly anaplastic, indicating an aggressive malignancy. My surgeon friend recommended referral to an oncologist colleague of his at the Alfred.

  Martin responded initially to a course of combination chemo-therapy and radiotherapy. He scored another six months of relatively pain-free and reasonable quality life. He gave up work and went on a disability pension. He continued to come to the surgery regularly. He became frailer and weaker but maintained his smile and his charming apparent innocence. As far as he could, he continued to make the most of Melbourne’s gay life with his many friends.

  And then the day came when he arrived to see me looking somewhat more serious than was his wont. ‘Those glands have come back, Doc. If anything they’re bigger. And I’m weak as a kitten.’

  I examined him gently. He was right. There were large matted glands in his neck, in his armpits and in both groins. His spleen was enlarged and he looked thin and wasted.

  ‘It’s time for me to go home now, Doc. I’ve talked to Mum on the phone. I told her everything. She wants me back. Dad and Mum say they don’t care if I’ve got AIDS. They love me and they’ll look after me. Do you know a cool doctor like you down that way?’

  ‘Wouldn’t you like to go back and see the oncologist first, Martin? Just to see if he’s got something else up his sleeve for the lymphoma?’

  ‘I reckon not, Doc. I don’t think I’ve got long to go. I’ve had a great time here in Melbourne, but home is home and if Mum and Dad want me, that’s the place for me now.’

  As it happened, I did know a Geelong doctor who was gay-friendly and who knew all about HIV/AIDS. I wrote a long referral letter for Martin to the Geelong doctor. As he stood up to leave, we looked at each other almost shyly, then I held out my arms. He fell into them and we hugged. For the last time I smelt that unforgettable palm-olive soap aroma.

  ‘God bless, Martin,’ I managed to say as I blinked back the tears.

  He grinned, ‘God bless, Doc. Love ya always!’

  I missed Martin’s visits to the surgery. Even when he was most unwell, his smile was like a ray of sunshine on a gloomy day. But I couldn’t regret that I would not be the one providing terminal care for him. I am not sure I could have faced his final deterioration.

  Leslie

  Brian and Leslie, two of my gay patients from back at the MCDC, turned up at my Fairfield clinic one evening around 1990 for HIV antibody testing. I’d met them in my first few weeks at the MCDC – a gay couple brave enough to attend the dreaded government clinic for their sexual health problems. Unusually for the time, they then lived in the CBD. They’d started out as my patients and later had become friends. Leslie was into flowers, and so on the afternoon of Christmas Eve 1980, a large bouquet of Australian native flowers had been delivered to the front desk. The accompanying card said:

  To David, in appreciation that friendliness has at last happened at the Clinic. Love from Leslie and Brian.

  I was very touched. No other patient, in my fifteen years of medical practice, had ever sent me flowers. Brian and Leslie had attended the clinic frequently during that year. They were devoted to each other, but their relationship was an open one and they had several other casual sexual partners. They’d had stayed in touch during my time at the MCDC, still attending for check-ups, and the need for treatment on occasions. They were both outspoken gay activists, but their underlying, kindly natures seemed at odds with the aggressive stance they sometimes took in public.

  They had decided the time had come to know their HIV status.

  Brian’s test was negative, but, sadly, Leslie’s was positive. I found it difficult to break the news. But, Leslie took it as I expected he would, with defiant fortitude. He came to see me regularly. He must have been infected for some time, as his T cell count immediately after diagnosis was 250, well below normal. Over subsequent months, the count dropped precipitously. I remember doing a house call once when he had a fever – they had moved to an apartment in Port Melbourne by then – but fortunately, it wasn’t serious. However, in all too short a time, Leslie developed an opportunistic infection – I cannot remember what it was now – that required inpatient treatment at Fairfield for a few weeks.

  I was amazed at the matter-of-fact way in which Leslie coped with his illness and his steady refusal to let HIV dominate his life. He continued working until it was impossible for him to carry on. Even after retirement, he worked part-time for the Victorian AIDS Council. I saw him regularly at Fairfield. Like most patients, he tried AZT and its successors, with only limited effectiveness.

  Leslie had an ambition. He came from Tasmania, but had never completed the Cradle Mountain walk. With his time short, he was now determined to make the attempt. With a T cell count below 100, and little remaining physical stamina, I was doubtful that he would ever manage the journey. But, I didn’t count on the strength of his resolve. He had friends who were willing to go with him, and in late 1991, they set off.

  My fiftieth birthday fell on the first of November. Michael had planned a celebration at our home in Richmond and Brian and Leslie had been invited, but only Brian was able to attend as Leslie was in Tasmania. On the morning of my birthday, a very large basket overflowing with Australian flowers arrived from the florist, with a card from Leslie wishing me a happy birthday and apologising for not being able to attend the party. And, a week or two later, I had a postcard from Devonport.

  Leslie had completed his Cradle Mountain walk.

  Soon after his return, with his T cell count now below 50, his eye-sight began to fail. He had developed another serious opportunistic infection – cytomegalovirus (CMV) retinitis. To save his sight, the new infection required admission to Fairfield Hospital for an intensive three-week course of an intravenous drug called DHPG, or ganciclovir. Despite this setback, Leslie now had another ambition: a trip to the United Kingdom. The logistics were complicated. To ensure the CMV infection didn’t recur, he would need ongoing intravenous infusions of DHPG three times per week. In Melbourne that could easily be done at the Day Care Centre at Fairfield, but how, I wondered, could that be managed overseas? I did a little research and discovered there were AIDS centres in some UK hospitals, where DHPG could be obtained. However, Leslie and his travelling partner would have to learn to administer the intravenous infusio
n themselves. For this purpose, he would need a Portacath inserted into his chest wall.23 Leslie was undeterred. The Portacath was inserted and the necessary instruction for Leslie and his travelling companion was carried out by the nursing staff in the Fairfield Day Centre. In April 1992 Michael and I received a postcard. It read very typically:

  We’ve made it to a very cold Edinburgh. It’s sleeting, but quite a spectacular place. Doing the DHPG is a bit tedious, especially when one is tired. Otherwise we’re doing OK. No Day Care-type service. They just give me supplies for our home use. Off to the Lakes District tomorrow.

  Leslie and his friend survived the overseas trip, but Leslie was not to survive much longer. He was re-admitted to Fairfield with another opportunistic infection. For several weeks, he put up a brave fight, but the end was never in doubt. He died peacefully of AIDS in Ward 4, in late 1992, a year before his fortieth birthday. I was quite heartbroken to lose the boy who always sent me flowers.

  Paolo

  Not all patients were so easy to deal with. In many cases, there was an underlying anger and bitterness that their prospects of living were being taken away at such an early age. Some patients sought release in drugs and became irrational, destructive of themselves and others. Given the circumstances, I found these reactions understandable and forgivable, even if it was not always comfortable to be the treating doctor. Paolo was a case in point.

  One of my Carlton patients, Luke, was a laboratory scientist who worked for a small, independent pathology firm in North Fitzroy. About six months before I finished at the Carlton practice and moved to Cairns in 1993, he made an appointment to see me and arrived looking uncomfortable. He made it clear he had not come for a medical consultation but rather to ask ‘a very big favour’. Having made that plain, he seemed uncertain what to say. I tried to set him at ease, saying I would be happy to help him if I was able. He stumbled and stuttered over the story, but finally it all came out.