Tag Archives: treatment regimes

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Trolling for a Cause

Okay, full disclosure: in my day, ‘trolling’ was either dropping a baited fishing line in the water behind the boat as you cruised, or watching out for Billy Goat Gruff villains under the next bridge. I didn’t realize just how much I was in need of a more recent update. I mean why does everything now seem to have an online reference? A diktat. That which was once perfectly happy as a denotative word, complete with papers as an official definition, has since wandered onto the wild side beyond the tracks and reinvented itself as a ‘connote’ –or whatever the noun for its once respectable verb might be. I suppose I could look upon their ilk as metaphors, but I suspect they are a little too slippery to be confined like that.

Maybe what has drawn my interest this time is an article I saw a while back on my BBC news phone app: http://www.bbc.com/news/world-asia-38267176 That I am being critical of matters to which I may, online at least, be naively party, has not escaped my notice. Irony, if not denotatives, can sometimes coexist, I suppose.

At any rate, it’s the issue of media advice I wish to address here. And the issue, I must confess, is problematic to say the least. In brief, a young London woman, Dami Olonisakin, began to write a sex and relationship blog, Simply Oloni, in 2008 because she felt that a lot of women didn’t have anyone to speak to. ‘It began as a personal lifestyle blog and she wanted to be the person that someone could speak to without being – or feeling – judged.’ Fair enough. She wanted ‘to give out impartial advice – something she believes can be more valuable than the opinion of a friend or a relative, who could be too emotionally involved.’ The identities of the participants and their problems were kept confidential and indeed she did not set herself up as an expert, merely an intermediary, as it were. She posted the problems on her Twitter account for her ‘26,000 followers to also share their advice and tips on the dilemma.”

It became quickly apparent, as she herself admits, that not every reader was happy with reporting the sorts of problems she receives. ‘”Not everyone has accepted that women are allowed to talk about sex freely, and we are allowed to embrace our sexuality; whether it’s choosing to keep your virginity until you’re married, or wanting to have casual sex, or wanting to be friends with benefits,” she says. “Your sex life is not a decision for other people to dictate.”’ And the critics were apparently not kind in their responses -they ‘trolled her’, to lapse into the vernacular for a moment: ‘”I’ve had trolls online telling me I’m ‘disgusting’ for suggesting that girls dating more than one man [at a time] is fine,” she says.’

A lot of things can be said under the cloak of online anonymity, to be sure and I suppose venting it serves some purpose or other… but as the inadvertent recipient of ‘trolling’ for writing a supportive comment on a news item a friend had posted online, I can attest to the concern –and even fright- that the vitriolic response elicited. It was almost as if someone had entered my house while I slept and spray-painted a hateful epithet on the bedroom wall. Perhaps I deserved it for daring to evince support for something in public -sorry, online; nobody agrees with everything, after all, but it was the emotions, the hatred, oozing from the words that felt threatening. And yet, maybe that’s just my age talking -presumably most youth today have evolved an internet shell under which they can shelter. But as the devastating effects of internet bullying have demonstrated, the shell is far from impervious. Far from universally distributed.

As bad as ‘trolling’ and internet bullying may be, however, I am more drawn to the courage of Oloni in recognizing the need that women –all of us, really- have a desperate wish to be heard. And to be heard impartially, non-judgmentally. Friends, clergy, and even doctors have the unfortunate habit of diagnosing and then advising; sometimes the person doesn’t want a diagnosis, let alone a treatment –she just wants someone to listen. Often the simple act of describing something to a dispassionate ear, is in itself a cure –or at least a relief. We don’t always require advice either –sometimes just a respectful silence. An acknowledgment.

This is often readily apparent in the privacy of my consulting room. I am a gynaecologist by trade, but occasionally ‘sounding board’ would describe it better. Deborah, a normal-appearing 38 year old Caucasian woman, was a good example.

She had been sent to me by a worried family doctor because of her heavy periods. Nothing the GP tried seemed to be working, so in desperation she had sent her reluctant patient to me to see what I could do for her. All of her tests were normal –iron stores, haemoglobin level, ultrasound of the uterine lining, and even a biopsy of those same cells (just in case) as she put in brackets.

On taking her history, Deborah assured me that her periods were quite regular and predictable, and on the whole, not any different from what she had experienced for years.

“I shouldn’t have mentioned them to Dr. Cameron,” she said once I had finished the history. “My mother and her sister both have heavy periods, so neither of them seemed at all worried when I was a teenager. But my GP seemed adamant: they were too heavy. In fact, she put me on all sorts of pills to decrease the flow…”

“And did they work?” I’m not sure why I interrupted her at that point, except for her eyes. They kept wandering to the pictures on the wall, or out the window to the tree outside. It was almost as it they feared to seek shelter on my face.

She shook her head at first, and then grinned. “Well, actually I didn’t take them -they were samples anyway, so…” She thought about it mid-sentence, and then suddenly revised it. “Well, actually I did take one and it made me feel sick, so that was it for the pills, I figured.” She shook her head sadly and then sent her eyes to explore the wooden carving of a woman holding a baby I’d positioned on my desk behind a plant to make it look as if she were hiding. “I felt like that woman,” she said, pointing at the carving. “You know, like I needed to hide from all her well-meaning advice.”

She was silent for a moment, so I waited. “I think Dr. Cameron had a thing about periods, actually. Each time I’d return for follow-up, she would smile and shake her head in that conspiratorial way women have –you know: ‘what a life we have to live’, and all that. She tried several contraceptives that I never took. And then she suggested a progesterone IUD that I refused.” Deborah finally allowed her eyes safe passage to my cheeks. “I only let her do the biopsy because she felt so upset about her treatment failures. She needed to find something. An explanation. Or better still, a solution.

“But I started to get really worried when she began to hint that I might need surgery. ‘Maybe just an ablation to get rid of the lining cells of the uterus,’ she added –probably because my face went pale.”

Deborah sat back in her chair and scrutinized my face, obviously more relaxed than when she’d entered the office. “Dr. Cameron suggested I see a gynaecologist that she was going to recommend, but I didn’t recognize the woman’s name. And anyway, I wasn’t so sure I wanted to discuss it with another woman…” A mischievous grin surfaced on her lips. “I figured I needed a non-participant… Neutral territory,” she added, her eyes twinkling. “And anyway, my mother sees you and she’s still got her uterus at seventy-three, so…” She blinked; it was my turn, apparently.

I shrugged and tried to suppress chuckling at her posture. She was comfortably ensconced –slouched, actually- in the far-from-comfortable wooden captain’s chair across from my desk, looking like she didn’t have a care in the world. I couldn’t remember anybody owning the chair –owning the office– like she did at that moment. “Well, Deborah, I have to say that I’m not worried about you.”

“No ablation? No hysterectomy…?” She pretended to pout. “Nothing?”

I smiled. “Well, if the periods get worse, you could always come back…”

The mischievous look returned. “Don’t worry, my mother would make me.”

 

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Early Morning Musings

There are times -often early in the morning after just getting to bed and then being awakened again to go to the Operating Room for some emergency, or more commonly, the Case Room for a delivery- when I wonder why I chose the field I did. After all, I could have gone into Pathology where microscopes never phone, or maybe Dermatology where a rash can usually wait until daylight to be evaluated. Things seem so much worse in the middle of the night.

But then dawn rolls around and things don’t seem so bad. I reconsider and re-evaluate the malevolence of the night and in the new light, I find I have new thoughts. Fresh thoughts. Happy thoughts, though seen through the aching of fatigue and the haze of bleary, reddened eyes. I am, I realize again and again, a Morning person. I relish the colours that spill over the sky from the newly born sun; I look forward to the world self-lit. I am an unabashed pantheist with respect to the freshly washed day. And I realize anew what a privileged life I live and what I have still to learn.

There are daily happenings I struggle to express -little things perhaps, but deeply meaningful in their context. Profound, even. Like the delivery of a child in the wee small hours to a woman with a major cardiac anomaly -one that may have ended in death in a setting less prepared than ours. My role as an accoucheur was admittedly minor -a technician really- but still, I was caught up in the moment. The woman smiled so loudly when I handed her the healthy infant that I just had to say to the beaming husband that he really had a special wife. There was a language barrier to be sure, but he shook my hand, looked me in the eye and said “Of course she’s special!” as if it was so obvious it didn’t even need to be said. I had to turn away so he wouldn’t see the little tear forming in my eye.

Or the time, a world away in Newfoundland, when I tried to bring some Western Canadian Wisdom to a staunchly self-reliant culture. I was working in the small little village of St.Anthony at the Grenfell Mission -a mission dedicated to ‘improving the health, education, and social welfare of people in coastal Labrador and northern Newfoundland’. I was a freshly minted specialist and too full of training to be mindful of the situation. I’d just seen a middle-aged woman with extremely heavy and frequent menses. She’d come to see me along with her obviously concerned husband, a local fisherman. I did what I had been taught in the big city schools and proceeded to discuss the differential diagnosis with them and the various treatment options available. After what must have been a lengthy monologue I asked them what option they preferred. I remember they both looked at each other for the longest time, and then at me. “Well, the way I figures it,” the husband said glancing at his wife, “When my family’s hungry, I don’t ask them fish in my boat what they wants. I jes do what I needs to do, boy. So do what you needs to do; fix my wife!”

Sometimes a difficult decision has to be made, and although the situation mandates explaining the reasons to the patient and their loved ones, and their opinions canvassed, in the final analysis they expect me to make a decision in their best interest. They have no way of knowing all the background that goes into making the best decision; ultimately and for better or worse, the buck, the expert opinion, really does stop with me -and the treatment if they agree. It’s a weighty thing to have to be a final arbiter; after all, they may disagree and seek a second opinion. But ultimately, a decision must be made by somebody. And that’s what they want: however onerous the responsibility, most are seeking someone to take charge of the situation. To do something.

But you know, it’s not all death and taxes. There are some truly delightful moments, even in the dead of night. I had been following a friendly couple through their labour and in the course of my visits as the night wore on, I discovered that he was a violist in the Symphony Orchestra. Although they were playing that evening, he didn’t want to take the chance of missing the delivery of his first and anxiously awaited child. But in case she delivered early, he’d brought his viola and it sat in its little black shell in the corner. He never so much as glanced at it as far as I could tell. Unfortunately, labour did not progress as we had hoped and so somewhere around three A.M. I decided she needed a Caesarian Section. They were both disappointed, of course -so was I, in fact- but were both reassured by the ability of being together in the OR. And yet as I checked to make sure her epidural was working and then made the skin incision, I wondered aloud where he was. It had seemed so important to him to be there with her. I asked her about it. “Oh, don’t worry about him,” she said from behind the drapes. “He’s got it all planned.”

I could see the anaesthesiologist grinning behind his mask: he was obviously in on a surprise. For me, the only surprises so far were the father’s absence, and the fact that the doors to the OR were wide open -something that would never be allowed during the busy daytime hours. So I continued with the operation and in a few minutes extracted a big, healthy and screaming baby. Suddenly, echoing along the empty corridor outside I could hear a viola playing Happy Birthday. You can’t wipe your eyes when you are scrubbed -a nurse had to do it. But only after she’d wiped her own. I still can’t listen to the tune without a sigh and a deep breath.

My field is hard and at times difficult, but there are moments… Many of them, in fact.

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Victim

One of the things about illness is that it seems unfair -especially if it involves pain or limitation. To some degree, I suspect we all give in to self-pity in the throes of the process; maybe it’s a coping mechanism: a world view that allows us center stage for a while, an excuse to treat ourselves to some unaccustomed luxury. And why not? It’s only a temporary aberration, limited not only in duration, but in magnitude as well. Tomorrow will undoubtedly be better – the flu will have diminished, the sprain begun to heal. Reality -Life- will peek around the corner and beckon us.

But suppose it’s not; suppose its the same -or worse? Suppose the pain and debility persist and we find ourselves powerless in the grip of something we cannot understand, let alone control? What then? What if you seek help and are told there’s nothing to be done, or that the treatment, even if successful, will come at a once-unacceptable price? At what point do you become someone else? Something else? At what point do you somehow become a victim –someone demeaned? Disempowered? At what point, in other words, do you give up? Assign blame -or assume guilt?

These are vexing questions to which I have no clever answers. But they are problems -dilemmas- that we all encounter as we travel through our days. Certainly the chronicity of pain is a problem in gynaecology. A problem in endometriosis in particular. Perhaps in some future blog I will discuss the condition more fully, but for now suffice it to say endometriosis has the potential for becoming a chronic source of on-going pain with treatment regimes that might include surgery and affect fertility. It is surrounded by myth and misinformation that adds to the burden; it has variable clinical presentations making diagnosis or even suspicion difficult. It can be over-diagnosed on the basis of inadequately investigated symptoms carrying with it the inevitable worry and concern about the future. It can be under-diagnosed leading to multiple unsuccessful treatments and distrust of the medical establishment and their lack of effective medication -a gold mine for alternative therapies.

All understandable I suppose, and yet treated or untreated, I have concerns for the person behind all this -the person experiencing the pain, the person who is experiencing this by herself, as we all must experience pain. I remember an ad in a medical journal years ago. It was an advertisement for a medication for endometriosis and it was a picture of a beautiful woman in an alluring nightie curled up in the fetal position on a rumpled bed. The caption read: “Trapped in her own body!” I was sufficiently disturbed by it to fire off a letter to the company. What it had assumed -indeed encouraged everyone to think- was that she was a victim, someone on whom a punishment, or at the very least an unfair condition, had been imposed.

Unfair? Of course it is unfair -but the word, the description, is inapplicable, really. Pain, diseases, injuries are not judgeable as fair or otherwise. Some are perhaps preventable, some avoidable, all undesirable but unfair..? I suppose I take issue more with the powerlessness of the woman implied in the ad, though. The message is to surrender, I think, like in one of those police shows where the criminal is surrounded with no chance of escape. For him, we are led to believe, the chances of anything he does that might result in his freedom are non-existent. He must give up, not only his freedom and perhaps how he would like to see his life unfold, but also hope.

The analogy is wearing thin here, for sure, but I’d like to think that hope is not what that woman in the ad has lost, that she does not think of herself as merely an undefended receptacle for pain, a defenseless body being assaulted and beaten on a bed somewhere. I’d like to think that she still sees herself as a person, a subject. Not an object: a thing acted upon, something incapable of acting on its own behalf -powerless. I realize that I say this from the  safety of my own health, as an unexperiencing voyager upon the surface of someone else’s disease. And yet despite the distance imposed I can still feel the suffering, however dilute. I can still encourage her to take some control, if only of very little. Any control, any sense of being able to influence direction is important. Even if the outcome, the destination, is unknown, walking along a path wherever it leads, is better than staying lost. It is hope renewed. It is the first step to recovery.