Thursday, 16 March 2017

A Tale of Two Healthcare Systems

Six days from now, at University Hospital of North Durham, just up the road from Dave’s and my house, I’ll be having a hysterectomy – Lord willing and the creek don’t rise, as they say in the part of the world where I grew up and which, to this day, I cannot help sometimes repeating. Lord willing and the creek don’t rise. It’s quite the caveat, isn’t it? As if you need to hedge your bets not once but twice. As I look ahead to next week’s surgery, however, it seems an apt precaution; here in England, I receive my health care through the National Health Service (NHS), and this surgery of mine – originally scheduled for early February – has been postponed once already.

Departing the US for the UK, August 2015.
(We totally got bumped up to first class!) 
If this sounds like I’m getting ready to bash the NHS, let me quickly say that I’m not. When Dave and I moved to England in August 2015, it was almost one year to the day after my double mastectomy – the procedure which, for me, marked the end of my having breast cancer. I still get regular check-ups and tests, however, as a follow-up; I will have these for years yet to come. As part of that follow-up, too, I still take a daily medication. The hysterectomy that I am (ostensibly) having next week is a result of that medication. (It’s Tamoxifen, which does a great job at preventing a recurrence of breast cancer but can simultaneously do some funny stuff to other parts of your body.)

For these various reasons, in the 19 months that I’ve lived in the UK, I’ve had quite a lot of interaction with the NHS already. I am, on the whole, a happy fan of the system.

One of the first things I did when Dave and I moved to Durham was to enroll myself with the general practitioners’ group here in town. How did this happen? I walked down to their office and showed them my resident visa and proof that I live in Durham. I filled out 2 pages of basic paperwork. That was all.

North Road of Durham, on the way
to the pharmacy.
I saw a doctor, a GP, the following day. That doctor, after reviewing my recent history, referred me to a local oncologist to do some follow-up work. In my first appointment with the oncologist, I had a regular physical check-up with her, as well as an ultrasound (to make sure I was still cancer-free). She also wrote me a new prescription for Tamoxifen and got me signed up at a nearby pharmacy so that every 2 months my new dose would be ready and waiting for me.

Picking up my medication at the Boots Pharmacy down the street was, initially, a startling moment. 

“Now, do you pay for your medicines, luv?” asked the woman at the pharmacist’s counter.

I had to stammer around in response. Being used not only to paying for prescription drugs in the US but paying in fact quite a lot – even with decent insurance – I had no idea what she meant.

In the UK, however, as I soon learned, all prescriptions are free to those who make below a certain income level. After a little asking around, I found that Dave and I don’t qualify for the free drugs, and at the Boots counter, I braced myself for the fee. And how much did a 2 months’ prescription of Tamoxifen cost? A grand total of £8.00. (Just under $10.00.)

Since then, I’ve seen my oncologist, Dr. Taylor, every 6 months for a checkup. I’ve also visited my local GP for a few minor concerns; to get an appointment, all I have to do is call the medical center and ask -- almost always, they have an appointment available on that same day. Once I arrive, I’ve never waited for the doctor for more than 10 minutes. Most times, I’ve barely sat down and cracked open the latest Living North magazine before the nurse calls my name.

University Hospital of North Durham,
where I'll have my surgery.
At my last visit with Dr. Taylor, I told her that I’d had a little unusual bleeding. I thought I should mention it, since I knew that Tamoxifen could thicken my uterine wall and increase the size of a relatively small fibroid I had. (Neither of these developments are optimal.)

“It doesn’t sound like anything to be worried about,” said Dr. Taylor, “but would it make you feel better to have it checked out? We can do that, for your peace of mind.”

Ever since I had cancer, I’m all about checking everything out, so I said Yes. As a result, I had another ultrasound, this time obviously of my uterus, as well as an MRI. Following these procedures and a 40-minute consultation with a specialist in gynecological surgery, I opted to have the hysterectomy that will (probably) now happen next week. I’ve been told that I’ll be in the hospital after this surgery for between 4 and 6 days.

That’s a fair amount of medical care, yes? That’s a fair of amount of medical practitioners’ time and resources used up by little ole moi. And how much, you might ask, has it cost me? How much is it going to cost me?

The answer is: 0, and 0.

If you’re a US American, this will likely stagger your brain. It staggers mine, anyway.

All I have to do to receive this array of healthcare – for free – is be a legal resident of the UK. That’s all it takes for me – or anyone – to receive healthcare from the NHS. As much healthcare as I ever need.

Dave and I have not bought medical insurance in the UK. We don’t need it. We’re enrolled in the national health system, which is enough. And – I have to say this just one more time – it is free.

Yes, we pay taxes. But our personal income tax rate here in the UK is surprisingly similar to what we’d be paying in the US: 23.4 % as opposed to 20.7%.[i] A difference, in other words, of less than 3%. It’s worth pointing out, too, that while the UK spends 9% of GDP on health care and covers every individual in the country, the US spends almost twice that on health care – 17% of GDP – but, even with Obamacare, still fails to cover 10% of the population. (This has something to do with US doctors being paid per number of tests they run and US drug companies wielding a lot of power, in a way they do not in the UK. Thus endeth my economic analysis, but if you want to read more on the topic, the Kaiser Family Foundation provides helpful and in-depth information.)

A friend of mine here in Durham, a physician who works for the NHS, had this to say recently: “I’m really proud of the NHS. I love it that it covers everyone, that I can treat any patient who walks through my door with exactly the treatment I think she needs without worrying about whether her insurance will cover it – whether she’ll be able to afford it. It gives me real freedom as a doctor. And it works for the best interest of my patients, too.”[ii]

My friend went on to describe colleagues of hers in the US, who have to scramble around looking for alternatives for some of their patients – looking for second- or third-best treatment choices – because those patients cannot afford the best option.

This is LITERALLY how happy I felt
when I heard that my white blood cell count
had gone up again.
It reminded me of my own experience in the US, when I was going through cancer treatment. Early on, my oncologist at the University of Wisconsin Health Center (UW Health) told me, “We’ll need to watch your white blood cell count as you go through chemo. It can really take out the white blood cells.” Indeed, it did. After my first round of chemotherapy, my white blood cell count dropped so low, I couldn’t get my second round of chemo on schedule. I had to wait an additional week, to get the white blood cell count back up. “But we don’t want to keep delaying your treatment like that, with every new round of chemo,” my oncologist cautioned. I’d need a new drug, to boost my white blood cells, the day after each chemo treatment.

But what was the price tag on this magic, much-needed drug, called Neulasta? Well, it came in the form of an injection. I’d need 5 such injections, from start to finish. Even with the price that Dave’s and my insurance company had negotiated, each cost injection cost $2,500.

My kind doctor in Wisconsin took the time to look this information up for me, while I sat in his consultation room. I remember him being very distressed on my behalf. I remember him and his nurse doing just what my NHS-employed friend described of her US colleagues: scrambling around on their databases, trying to find an alternate, less-expensive solution.

The best they could come up with was this. My doctor could write a Neulasta prescription for me, and I could buy it (at a lower cost) from my local pharmacy. Then I, or one of my loved ones, could administer this shot at home.

When I first heard that this was our finest possible solution, I felt mildly hysterical. I mean, if you know either Dave or me even a little, you’ll also know that giving ourselves or each other shots is about as far outside our bailiwick as launching our own flight to the moon.

Dave and I, summer 2014.
Dave, bless his heart, read up on the subject. He reassured me that it would be fine. And, despite much fear and trembling on my own part, I soon found that Dave was an excellent giver of shots. It became one more bonding moment between us in the long, strange journey of treatment for cancer.

But what happens to cancer patients in the US who can’t afford even to buy the Neulasta shot for themselves? What happens to cancer patients in the US who don’t have a loved one who is willing and able to jab the needle into their arm?

When I was first diagnosed with breast cancer (and, to be fair, still freaking out), the social worker in the oncology ward thought I should be hooked up with a “buddy.” Someone, in other words, who lived locally and who’d had a similar diagnosis – who had already been through the same treatment I’d have. Perhaps because the database in Wisconsin was relatively small or perhaps because the exact kind of breast cancer I had was somewhat rare, the social worker struggled to find an exact “match” for me. When she did, the woman I spoke with, over the phone – my new “buddy” – was a 70-year-old living alone outside Milwaukee. Her name was Pat, and she was nothing but kind to me. But I also realized, by the end of that phone conversation, that while Pat’s initial diagnosis had been the same as mine, everything else that followed was about as different as two people’s experience of cancer treatment in the developed world could be. In short, I think she was a woman with few resources, personal or monetary.

Q: How could I could look happy,
in the
midst of chemo?

A: In large part, it was because I had my friend
Janet Thielke with me, making me laugh.
Pat had no one to take her to her chemo treatments. She traveled to them by bus or a taxi, and she sat through her treatments alone. When she was home, she was also alone. She remembered feeling cold all of the time. “Get yourself a nice warm wool hat to wear in the bed,” she said to me. “But even then, you know, it seemed like I still was cold.” Over the course of her chemo treatments, Pat became so run-down that she had to move in with her daughter, “and we don’t get along very well.” Surely the people in charge of this “buddy” system would have encouraged Pat to be comforting when she spoke to me. But she seemed to have little comfort to offer. To sum up, she said, “It was a hard time for me. But I’m sure you’ll do better, honey.”

I did, thank God, do better. I did much better. But I was lucky in many ways, not the least of which is that I came to cancer already equipped with the resources that would help me get through it: a regular, decent income; adequate insurance; a good baseline of health; a wide and loving community.

I think of Pat now as someone who, though she’d made use of the US healthcare system, had in some ways fallen down through its cracks.

But what of my own recent, somewhat unsettling experience with the NHS – the postponement, last month, of my surgery? It could be argued that the healthcare system of the UK has let me down, too.

When I learned of my surgery’s postponement and started telling others about, my friends in the US were at least as astonished as I. Some seemed to be even enraged. (We’re used to paying a lot of money for healthcare, and we think we should get what we pay for.) My UK friends, on the other hand, were all very sanguine about it. “Of course you’re disappointed,” they said, kindly. “You get your adrenaline up for the event, and then you have to come back down.” But it happens, they said; they weren’t very surprised. Some of them spoke from experience. “It’s because it was winter,” they said of my delayed surgery.

It seems there is limited bed space in the NHS hospitals, and in the winter, when the older population is at its most vulnerable, those beds tend to get filled up fast. Another friend of mine, who works in public health here in the North East, explained that no patient is released from the hospital until a team of healthcare providers have assessed the patient together and determined that she can leave in a healthy way. This assessment is not just about the patient’s physical condition but also includes the network of social support she’ll have back in her home territory. Elderly patients in fragile health won’t be returned home until it’s certain that they’ll have a local home health nurse available to pay daily visits, and a local social worker to ensure that the patient’s living conditions are safe.

Dave's and my street, here in Durham.
As a result, my friend said, all non-emergency cases take lower precedence during the winter months, and sometimes get pushed back a bit.

I never called Pat, my breast cancer “buddy” from outside Milwaukee, after that first phone conversation. I found her, through absolutely no fault of her own, to be too depressing for me. But I’ve thought of her fairly often since then. I think of her again now, as my thoughts return to the Durham  hospital, just up the road – as I think of entering its doors next Wednesday morning, Lord willing and the creek don’t rise. However many hundreds of elderly, unhealthy people that hospital took care of throughout our recent dark chilly winter, I hope many of them are safely home now. I like thinking that, here in Durham and its environs, those people have more and better resources to comfort and sustain them than a wool hat they might wear to bed.

[i] This is the average amount of federal and payroll taxes for a single-earning couple with no children.
[ii] On the flip side, UK doctors receive no remuneration or reward for prescribing additional treatments or tests. So, as my NHS-employed friend pointed out, you don’t see or fear physicians “milking” a patient with slews of procedures that aren’t necessarily needed. 

Friday, 3 March 2017

In Praise of Denial?

April 2014 -- getting my head shaved,
at the start of my chemo treatment.
My experience of breast cancer began, as it does for many women, with my finding a lump in my breast. In short order, this discovery led to a mammogram, a follow-up mammogram, a biopsy, and a diagnosis. Bing, bang, boom. Less than one month separated that initial cold shock of fear in the shower when my fingers landed on the new bump to my first sitting down in the chemotherapy chair.

For the particular kind of breast cancer I had, my treatment involved four months of chemotherapy first, then a double mastectomy. The goal of the chemo was to shrink the tumor, pre-surgery, as much as possible – ideally, to shrink it right out of existence.

But from the day when I found the lump – the day that began my whole cancer experience – I never touched that lump again.

I knew it was there, especially at first. In those last weeks before chemo, the lump was just really sore. Likely this was because it had been prodded and poked a great deal. But, too, I think the soreness grew out of my new hyper-awareness of this thing – this intruder, this alien form – in my body. I perceived it as sore.

April 2014, in Madison, Wisconsin.
Early chemo treatment.
My awareness of the lump continued, but in a different and ultimately much more positive way, during the first several sessions of chemo. Almost as soon as the chemical drip started up, I felt a crackling sensation in the exact place in my breast where I’d found the lump. Only there, a square half-inch, perhaps: an extremely localized sensation. It was as if the thing was on fire, being burned up, burned away – a visualization I found very helpful. When I mentioned this crackling or fizzing sensation to my chemo nurse, she replied, “Oh yes, a number of patients here talk about that. It’s almost as if the chemo knows exactly where in your body it’s needed, and it targets that place.”

Whether this is medically provable or not, I don’t know; I never did any research into breast cancer nor into its various treatments. (More on this in a moment.) But those few times in the chemotherapy chair were the only occasions, after my initial discovery of it, in which I was physically aware of my lump.

I avoided the thing – and any physical awareness I might have of it – with a vengeance. I never lay on my stomach, for fear of feeling the lump when the floor or the bed pushed back against it. In yoga, whenever we did any prostrate-on-the-mat postures, I always adjusted so that my chest was never mashed into the mat. Putting on or removing a bra, I was diligent not to touch – never touch – the part of my breast where the lump was, or had been. (I don’t mean to get too graphic here, but it’s hard to talk about breast cancer without speaking, too, of your breasts.)

My strategy throughout my cancer treatment -- right up to the post-surgery final report that my body was, thank God, clean of cancer -- was to visualize my breast as a water balloon, filled completely with water and nothing else. Clear and light! Nothing in there to worry about! As long as I never felt around for the lump, this visualization was increasingly easy to sustain. And it helped me feel better already.

Midway through my chemotherapy sessions, my oncologist made the announcement that he wanted to feel the lump again for himself, to see if or how much it had already shrunk.

I must have made a face when he said this, for he did a little double-take at me in response. “Is that all right with you?” he asked.

I gathered myself. He was my doctor. Of course it was all right. I said, “Sure. Do what you must. Feel the lump.”

“Don’t you ever feel it yourself?” asked my doctor.

“Not on your life!” I said, vehemently.

 “I don’t think I’d be able to stand not checking,” my doctor said. “Curiosity would get the better of me.”

I tried to explain that curiosity was not what was driving me then. It was, rather, the daily or hourly conviction that my breast was a water balloon.

He and his nurse both laughed a little. They may have been scandalized. The nurse even said something like, “Deny much?”

I was somewhat offended by this. I probably looked it, too, for the nurse quickly added, “Well, but at least you come to all your appointments. At least you are getting your chemo.”

That was the main point, I thought: to do everything I had to do to get better again, and then think no more about my lump, or about cancer at all, if I could help it. I did attend all my appointments. I got my chemo and my white blood cell-boosting injections; I gargled with salt water three times a day to prevent infections, and I avoided the sun, which because of chemo could burn me more easily; I cut my alcohol and red-meat consumption down to almost nil, and I rested, the days after chemo. I did everything the doctors told me to do maintain my health and more importantly get rid of the cancer. I did it assiduously. But I did not want to give the disease any more of my time and energy than was necessary. I did not want it to dictate my waking hours.

The end of that little story in my oncologist’s office is that I did let him palpate the lump, and it was smaller, and he was quite pleased about this. As was I. But as soon as I got out of that room, I went right back to my visualization of my breast as a water balloon. I never did touch my lump again, and after a while, it was gone.
This patient looks somewhat less disgruntled than
I probably was.

When I was first diagnosed, my oncologist had given me a huge and quite beautifully produced book on breast health and breast cancer. It was pink and white – of course – and chunky and thick as a doorstop. The oncologist had even marked some chapters for me to read. I took it home and put it on my living room bookshelf. I thought I would read it someday. But a strange thing happened, those first weeks after my diagnosis. I found myself moving that breast book higher and higher on the bookcase, until it was practically wedged under the ceiling. I eventually put it in the recycling bin, without having once cracked its covers.

The same thing happened to the shoebox-sized package of information that the local breast cancer survivors’ support group sent – it got recycled, too. Why should this one aspect, grave though it was, take center stage in my life? Why should I give it that much attention, when there were so many other things I could be doing, which felt much more energizing and affirming of life?

Once, during those months, a friend sent me a video clip of a project in France, wherein cancer patients were given surprise makeovers in order to distract them—“if even for a few moments”—from their illness. Watching that clip, I was mystified by the idea. Were these people really not able to forget their disease for a few moments?  As I wrote in my journal that afternoon, I could by then go for whole chunks of the day without a single thought about cancer.[i]

In dealing with a major crisis such as a life-threatening illness, writer Michael Kinsley notes two basic strategies: confrontation and denial. They are “equally valid strategies,” Kinsley opines in a 2001 essay for Time magazine, and “the choice between them is one of personal taste.” Kinsley had been living with Parkinson’s disease for eight years by the time he wrote this essay, though almost no one else knew about it. In his essay, “In Defense of Denial,” Kinsley first revealed his disease to the public. Shortly after his own diagnosis, he writes,

“I chose denial. If ever you're entitled to be selfish, I thought (and still think), this is it. So I see a good doctor, take my pills most of the time and go about my business. I couldn't tell you some of the most basic things about Parkinson's and how it works. .  . . Most days for the past eight years I've hardly given a thought to Parkinson's disease.”

Years later, in a 2015 This American Life podcast, “Don’t Need to Know Basis,” Kinsley went on to explain why he’d chosen denial over confrontation. The strategy of confrontation, Kinsley argues, is the one that our Western culture strongly prefers. In times of severe illness, cultural expectations dictate that we join the community of fellow sufferers; that we put our illness at the center of our lives. To some degree, we build a new identity around our disease. Denial, however, involves trying to live your life outside the world of your illness. While you follow your doctor’s instructions – while you do what is medically needed –– you dwell on your disease as little as possible. You don’t study it; you do not join groups; you make no more concessions to your illness than are absolutely required. In choosing denial as his initial response to Parkinson’s disease, his interviewer notes, Michael Kinsley gained “eight years of privacy and relative normalcy.”

Michael Kinsley.
The word denial has negative connotations, of course. I’d like to find a more positive way to express this approach to living with illness. What term would work better? “Controlled attention” or “limited attention,” maybe? The level of attention that allows you to respond to your crisis while also continuing to live your life as fully and joyfully as you can.

How we react to crisis depends on our individual context, of course. As Ian James Kidd remarks in his essay “Being Ill, Living Well,” a person’s response to grave illness depends “on many things – the nature of the illness, one’s temperament, the sorts of practical and social support available.” In other words, each person’s experience of illness is different, and I suspect that even an illness as common as cancer manifests in a slightly different way in each and every body.

In short, I don’t mean to be prescriptive as I suggest that a healthy form of denial – of “controlled or limited attention,” if you will – may be one possible response to the current political crisis in the U.S. I don’t think such a response is for everyone. For some people, I am convinced, keeping up with the hourly news cycle from the White House is galvanizing. -- energizing. Perhaps those individuals are the real activists. They are, at least, more temperamentally suited to that position.

Joyful activists -- including Bella Abzug.
At the same time, I’m aware of a number of friends who, for the past month, have felt trapped in a cycle of despair and anxiety caused by absorption in the U.S. news feed. I’ve heard writers say they can no longer write; artists say they can no longer make art. With some friends, it’s not just that they’ve become less productive, but that they feel paralyzed.

I sympathize with the way the news from the D.T. administration can suck you straight down a black hole. The news is so bad, so often, we can’t help but be mesmerized by it, in the same way our eyes follow a car accident on the highway, often against our own will. Too, there’s the fear that by not paying close enough or regular enough attention to news from the White House, we are shirking our duties as citizens. In the first months after the U.S. elections, I tried to keep up but I couldn’t. I found the news cycle demoralizing. I could hardly stand to hear D.T.’s voice. Still, I’d go through spasms of guilt over not staying on top of each new development. Did you hear what D.T. just said – or did – or grabbed? a friend would ask, and I’d freeze with guilt. I did not. I had not been doing my duty.

With time, though, I find I react to this new disease of our country much as I did to my own, personally, three years ago. I don’t want to give it any more of my energy than I have to.

It’s not that I don’t despise the ideals and policies of the current president and the people with whom he’s surrounded himself. It’s not that I don’t stand against the current administration with every fiber of my moral being. I do, and I do. And I’ll continue to let my representatives in Congress know about it, through at-least-weekly emails and calls. (They don’t want to hear it, I’m sure. I am telling them anyway.) I’ll continue to donate money to organizations that push back[ii] against the D.T. White House. I will vote in 2018.

I’ll take my chemo, in other words. I’ll get my shots. I’ll avoid the sun and wash out my mouth with salt water, and I will rest when I have to.

But I will not let this disease diminish the light I’m able to bring to the world. I want to find a livable balance. A balance between my fear of not knowing enough – of not paying enough attention to the U.S. news cycle, whatever “enough” may be – and refusing to let the spew of evil emanating from the White House prevent me from doing my work.

April 2014 in Madison, Wisconsin.
I’m making an effort these days not to check the news feed until late afternoon, when my writing is done. When I’ve contributed what I can for the day of my energy and talent to the work I believe I’m called to do – to making my art.

I think we each have to monitor ourselves. If the news cycle makes you want to stand up and fight, then thank God for you. But if it paralyzes you or makes you less productive than you'd be otherwise, then I hope you’re able to step away from it. I hope you’re able to keep making the contribution to the world that you alone are able to make.

The impact or size of the work doesn’t matter. What matters, rather, is not letting D.T. and his minions take that from us. Not allowing them that much power.  

#     #     #

As I write this, I keep thinking about what the journalist and breast cancer survivor Barbara Ehrenreich termed “bright-siding”: the impulse, within the Western world, to turn every story of illness or crisis into a triumphant narrative. I don’t want to be guilty of the kind of positive thinking that tries to make light of a real calamity. I want to acknowledge that with this presidency, as with any major illness, there will be repercussions even after it’s over—even after DT is replaced, please God, by a wiser and more compassionate president; even after an ill person has been given a clean bill of health once again.

On a somewhat related note, two announcements:

1.      Many of you know that I was scheduled to have a hysterectomy in February, for complications caused by the post-cancer drug I now take. That surgery has been postponed until 22 March. I hope to write about my learning to be a patient in the U.K. – where the National Health Service works quite differently from what I am used to – for my next post in Wuthering Yankee, two weeks from now.

2.      From now on, I'll alternate between writing at Wuthering Yankee on one week, and at Pink Wig Redux on the next. In solidarity with several close friends and family members who are now going through cancer, I've decided to resurrect the blog I wrote 3 years ago, during my own cancer treatment. (That blog was called The Adventures of the Pink Wig  – hence the "new" Pink Wig Redux.)  

[i] This is not to say that an undercurrent of anxiety didn’t run through those months of my life. It did. But it was that only: an undercurrent, not a tidal wave.

[ii] By the way, I love that this list of organizations that push back against the D.T. administration comes from Cosmopolitan magazine. The resistance is everywhere!