Like a funeral selfie? An Open Letter to Emma G. Keller and the editors of The Guardian

Image credit: Serp / 123RF Stock Photo

Going into more than one kind of light.
Image credit: Serp / 123RF Stock Photo

In reference to Ms Keller’s astonishing piece “Forget funeral selfies. What are the ethics of tweeting a terminal illness?” published online on 8 January 2014.

First, my full disclosure: Like Lisa Bonchek Adams, I have Stage IV (advanced, metastatic) breast cancer, although I am perhaps not as close to the end as Lisa is. I have a blog. I tweet and I use Facebook. Ms Keller, do you have something to disclose? I am at a loss to understand why you felt it necessary to write this opinion piece and more particularly why you felt it necessary to blitz Lisa Adams with barely disguised ad hominem attacks.

There are so many hurtful elements in “Forget funeral selfies” that I cannot respond to all of them. Indeed, I don’t want to. I read the piece yesterday (It doesn’t seem be a journalistic article, and it’s not really an essay, either. I don’t know how to describe Keller’s text other than as a “piece”.) and was so upset by it that I put off writing this response until today.

Let’s start with “funeral selfies”, shall we? Quoting Keller, “Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her [Lisa Adams’] tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?” I’ll leave it to Keller to explore the question about her own “obsession” and her discomfort with it, though I think it would have been better for her on a personal level and would have led to a much deeper and more interesting essay had she done so before publishing.

Okay, then: funeral selfies – cellphone photographs some people take of themselves while attending funerals. They are in questionable taste at the very least, most of us would agree, and very self-centered at a time when our thoughts should turn to the deceased. From the beginning, then, Keller tells us what we are expected to take away from her piece: live tweeting one’s experience of terminal illness is bad form.

But how is tweeting (or blogging) my personal experience equivalent to funeral selfies, let alone “one step further”, a “deathbed selfie”? The comparison is so strange that I had a terrible time trying to take it in.

Then it came to me. Those of us who use social media to talk about our experience with our terminal illness are defying categories. Social media is supposed to be for people who eat in restaurants and play with their pets and attend sporting events and go to professional conferences, right? People with terminal illness are supposed to rest quietly in darkened rooms or lie sighing on chaise longues on sun porches or smile bravely as they murmur a few words to their nearest and dearest, right?

Could it be that Keller’s discomfort with her “obsession” with Lisa’s tweets is a reflection of society’s discomfort with death and dying? People like Lisa and like many of my brothers- and sisters-in-mets (my fond term for people who have metastatic breast cancer)—people like me—cause discomfort to some because we dare to bring our experience into the full light of day. We cause discomfort to some because we are living, living in acute awareness of our impending death, living in pain but living as fully as we can while we are dying.

I write because I am a writer. I’ve used words to try to understand and express my inner world since I was seven years old when I wrote an extended metaphor based on the life cycle of a silk worm. My writing has (thankfully) become more sophisticated as I’ve grown older and has become more of a consciously used tool of introspection. I suspect that is the case with many of us bloggers and, dare I say it, journalists.

Should we stop writing just because we are nearing the end of life? Should we forego the social interaction that is made so difficult by our physical condition but is facilitated through the new media? Should we lock ourselves away in a figurative darkened room so as not to chance disturbing the hale and hearty with thoughts of death?

This is not a question of ethics, Emma Keller; it is a social issue and an eschatological question (in the larger sense). It is not a social gaffe on the level of funeral selfies; it is an expression of our humanness, of our being as a social animal. Most importantly, it is not for you or anyone else to judge the decision of a dying woman.

The apology you owe to Lisa Bonchek Adams goes far beyond not having “given her advanced warning about the article”.

Respect

Pinktober Guest Post: By me!

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Today’s post is a slightly modified version of a post I wrote at the beginning of this year. If you want to know a little more about me, please take click the link. If you want to make me smile (she solicited shamelessly) please follow this blog and like my Facebook page.

30 percentI live in Israel. According to the Israeli Ministry of Health, about one in eight women in this country will be diagnosed with breast cancer during their lives. Medical sources agree that although only about 6% of breast cancer is metastatic at first diagnosis, close to thirty percent of all breast cancers, including those detected early, will metastasize.

Thirty percent.

My breast cancer was self-detected and them confirmed on my first ever mammography. There was already lymph node involvement and the question of distant mets was raised and dismissed. The primary tumor was about as long as my thumb. All the factors together put the staging at IIB or IIIA. Within a year, metastasis was diagnosed – in my case, to the spine.

Practically speaking, this means that I will never be healthy again. While people can live for several years with bone mets (the most common site of breast cancer metastasis), life will never be the same. Life is never the same for anyone who has lived through a “cancer event”, but for those of us with metastatic cancer it means living with increasingly severe pain and the side effects of pain relieving drugs, with increasing fatigue and the attendant frustration. It means living from treatment to treatment, and a narrowing of one’s sphere of activity and social circle. It means coming to terms with one’s mortality in a very immediate way, while helping loved ones do the same.

These are some of the commonalities among people living with metastatic cancer. But we are still individuals right up to the end. We each have our own personality, coping techniques, level of insight, hobbies, loves, fears. We still have preferences for how to live our remaining time. Some of us strive for continuous positive thinking, some become social or politically active. Some of us reach out to others, and some prefer to be alone. Some are indescribably sad; others seethe with rage. Many of us are all of these things at different times.

I wrote the original version of this post on an iPad while resting in bed. The weather was nice and I wanted to go outside to try to repair some of the ravages that recent storms visited on my garden, but I was exhausted after ten minutes. Some days I don’t even get dressed because I know I’ll be spending most of the day in bed, but on other days I call a friend who takes me on short walks in the neighborhood. Metastatic cancer is helping me learn to be more flexible and to adjust my expectations.

I can’t say I am exactly the same woman I was before the cancer, but I don’t think I’ve changed all that much in some ways. I still prefer to avoid confrontation, and I still use humor as my primary defense mechanism. I still love poetry and novels and movies about people and feelings. I am still fascinated by the “people side” of history,  am still more of a process person than a goal-oriented one, and I am still competitive. (Lexulous, anyone?)

While I was in bed writing this post back in January, the man who helped me by cleaning my house accidentally bumped my bed and the jarring caused me pain. “I hate being like this,” I found myself yelling and then I felt ashamed of myself for “breaking down” in front of him.

He looked at me with kindness and a little smile. “I know,” he said in a broken combination of Hebrew and English. (He is Hungarian and speaks neither language easily.) “For you, this is very difficult. You are a very strong person,” he made a fist. Then he held his arms out in front of him, palms up, and swept them wide open. “And you love life, living,” he said.  “It is very hard for you.”

Yes and yes.

Addendum, October 2013. When I wrote this post, I was still refusing narcotic pain relief. Ten months later, I am taking it–not as often as my doctor would like, but more often than I want to. Almost daily now, in fact, even though I’m pretty good at dealing with pain due to many injuries in childhood and multiple orthopedic surgeries as an adult.

In the intervening months I’ve had to stop working in my primary profession. I’m grateful that I have a second skill that allows me to work at home, as I’m able. My sweet Hungarian helper had to quit because of back trouble, but we’re still in touch. I have a wonderful new helper now.

I’m going through a hard patch right now, physically and emotionally, due to cancer and other things. I’m very grateful that I have a profound knowledge that the only constant in life is change.

On the Evening of a Bad Day

I know that no one ever promised life would be fair. 

I know there is no reason that this shouldn’t have happened to me and no reason why it did.
I know that sometimes things just happen and we don’t know why.

I also know that I’m fine in myself, which is how I say that I am basically, fundamentally at peace and that a stream of quiet joy and serenity flows underneath all the hard stuff and that once I calm down I’ll be able to tap into it again.

I know all those things.

But right now? Right now I’m sad that I’m in pain and that I have advanced cancer and that my life has become so limited. (*)

I’m glad that I have friends around the world and that I can reach out to them and have contact within minutes, less. But I wish there was someone here who would put their arms around me and hold me and pray with me and stroke my hair and help me through the hard parts.

Sometimes people write very complimentary things to me in the comments of posts. That is part of the reason that I think it’s important to write about these times, too. Yes, I practice mindfulness—but not all the time. Yes, I know how to change my attitude—but sometimes I don’t have the strength to do it.

I get down, I get angry, I get lonely, I get frustrated. These feelings come and they are awful. But I also know that “feelings are not the boss of me”, as I like to say. I know that in a few hours or the next day I’ll be back to baseline.

So right now I’m going to make some hot chocolate and take a sleeping pill and set another pain pill out ready in case I need it during the night. I’m going to spend some time with my friends on Facebook—and these are real people, real friends—and then I’ll go to bed for the night.

This sonnet by Keats fits my feeling at this time. Sleep, comfort, loneliness, death.

To Sleep

O soft embalmer of the still midnight,
      Shutting, with careful fingers and benign,
Our gloom-pleas’d eyes, embower’d from the light,
      Enshaded in forgetfulness divine:
O soothest Sleep! if so it please thee, close
      In midst of this thine hymn my willing eyes,
Or wait the “Amen,” ere thy poppy throws
      Around my bed its lulling charities.
Then save me, or the passed day will shine
Upon my pillow, breeding many woes,—
      Save me from curious Conscience, that still lords
Its strength for darkness, burrowing like a mole;
      Turn the key deftly in the oiled wards,
And seal the hushed Casket of my Soul.

(*) Up to this point, the text is copied from my Facebook status.

Cancer cannot take this away

Image credit: pixelsaway / 123RF Stock Photo Used with permission.

Image credit: pixelsaway / 123RF Stock Photo
Used with permission.

Yesterday I was in enough pain to take the stronger medication for it. I was also sad and upset about several unrelated bits of bad news that I’ve received recently. I was feeling alone and needy and, truth be told, more than a little sorry for myself. I spent most of the day in bed, feeling drugged and loopy and groggy and dozing off and on, feeling needy and weepy when I was awake. It was not a good day.

Today I woke up and I’m in enough pain to take the stronger medication for it. I am still sad and upset by the bad news. I am still alone and I still need help with simple tasks. But I am not feeling needy, I am up at the computer writing this post, and I am having a friendly chat with my home help, L, who is here working her magic.

So what is the difference between yesterday and today? Yes, my home help L the wonder-worker is here, but the truth is that hours before her arrival I was up and showered and dressed in clean clothes and sitting at the computer doing my sorely neglected email. What changed?

The pain didn’t change. The fatigue didn’t change. The cancer didn’t go away. The sleep issues were not resolved. Why am I up and smiling today? I think it’s the A-word: attitude. Before I went to sleep last night I made a decision to change my attitude.

It’s as simple as it sounds and as difficult as it sounds. I wrote a short update in a Facebook cancer support group to which I belong, and I was complaining about everything from bone tumor pain to mosquito bites. I knew that I would get lots of “poor you!” and hugs and supportive comments and a joke or two in response. But by the end of the my update I found myself writing:

The best thing on earth is that tomorrow is a new day! And also I was able to get up and make some food and drink. And my home help is coming tomorrow. So I should just get off the pity pot and make a gratitude list. 

Damn. I hate it when I talk myself out of my moods! 

I somehow allowed myself to change the focus, to look in a different direction, to change my attitude. Sometimes that’s all it takes.

When I was an undergraduate (a long, long time ago in a galaxy far, far away) I was profoundly impressed by Victor Frankl’s Man’s Search for Meaning. This is one of the books that changed my life. In particular, this: “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” 

That blew me away forty-some odd years ago and it still does. No matter what cancer takes away from me. No matter what bad news I receive, no matter what problems I face, I have the freedom to choose how I relate to it. This doesn’t mean mindlessly smiling through a crap storm (remember – not recognizing reality is insane), but it means that I can choose to collapse under it, to fight it, to accept it, to try to change the circumstances, to move out from under it. I can choose to identify myself with the crap storm or to remember that it is separate from me, it is not me. As a religious woman, I can choose to put my faith in the hands of the Creator, remembering that in my religious tradition God helps those who help themselves.

Whatever I choose–even if I choose through inaction–it is my choice. That is the power that is left to me, “the last of the human freedoms”, and when I choose to exercise it I reclaim some of my personhood. My personhood, the choice of my attitude: cancer cannot take that away from me.

Don’t forget: Anyone who is affected by metastatic breast cancer is invited to submit a post for me to publish during October. If you are interested, please contact me at the email in the sidebar or tell me in the comments. We want to hear your voice!

Boarding Pass

Image Credit: By cartoonist Kate Matthews.  Check out her work at www.facebook.com/cancercartoons Used with permission.

Image Credit: By cartoonist Kate Matthews. Check out her work at http://www.facebook.com/cancercartoons Used with permission.

Will it surprise anyone that death and dying are fairly often in my thoughts? Not in a morbid way, but as an event I will soon attend, a fact of life, the next step. I’ve written several posts about it. My favorites are Living in an Undefined Space, It’s not death, it’s the dyingand One Advantage of Dying? 

Perhaps that is why this cartoon spoke to me so loudly. Yes, people do say that to people with advanced cancer.

They are not mean-spirited people or cruel or pathologically self-involved people. Usually, they are people who love me, who don’t want me to be depressed or morbid, who are trying to cheer me up. It isn’t a horrid thing to say, but it is, I’m sorry to say, misguided and, however unknowingly, disrespectful of my situation and my feelings about it.

I don’t think anyone would seriously claim that the awareness of death experienced by a person of average health or a person who has a chronic, non-lethal disease is the same awareness as that of someone who has a disease that is fatal and cannot be cured. Metastatic breast cancer (MBC) is “managed” but there is no medical cure. It will kill us. It will kill me.

So what does that mean to me? How does it affect my life, my decisions? I’m not talking here about limited ability to perform activities of daily living (ADL) or about quality of life impaired by pain, anxiety, treatment side effects, and so on. I’m talking about the awareness of the relative imminence of my death: what does that do to my inner world? How does it affect my life choices day by day?

The biggest effect, I think, is that more than ever I am striving to be kind to people. Kindness is greatly under-rated. I don’t think I’m much different from other people in finding it much easier to say “I love you with the love of the Lord” (or whatever) than to do something kind for someone who may have hurt me. Yet acts of kindness speak much louder than words.

A friend of mine gave up most of her free day today to accompany me on my first walk outside the house in months. That was kindness. Other friends take time to email or text me encouraging or funny little messages. That is kindness. Just “being nice” to people is kindness. It’s easy when it’s someone I like. When it’s someone about whom I feel indifferent or even dislike – whoopsy! That’s a whole ‘nother thing!

A couple of weeks ago, my then household help broke something, a pyrex bowl with cover that I use quite a bit. He told me about it, and my first reaction was frustration and even anger. I took a breath and decided to be kind instead of angry. He didn’t do it on purpose and he knew he shouldn’t break things. It was an accident and he didn’t need me to make him feel bad about it.

“Oh well,” I said. “Be sure to clean up all the little bits. Pyrex is a bear when it breaks.” And that was that. I chose kindness over anger. Neither option would change the reality of the broken bowl, but a kind response is a concrete way to show that I value people, value that young man, over a glass bowl.

Valuing people and letting them know I value them is another area of concentration for me since my MBC diagnosis. Being kind is part of that. So is being polite, not blaming people for things that are not their fault and not going overboard when they are at fault. It’s a question of priorities. Which is more precious: my late pizza delivery, a broken bowl, a mistake in my grocery order… or the person I am talking to?

Of course I get angry and frustrated; I’m not pretending that I don’t. All I’m saying is that I am learning to prioritize the more important over the less.

In a novel I read once, an old woman said, “I wish I knew when I was going to die.” The people around were a little shocked and asked her why. “Because then,” she replied, “I should know what book to read next.”

Priorities.

Cancer, anxiety and mindfulness

It’s no secret that a cancer diagnosis makes people depressed and anxious. It is less known that some medicines used in the treatment of breast cancer can cause anxiety, particularly hormonal treatments.(1)

It is even less well known that, in contrast to the depression, which tends to decrease over time, the anxiety tends to persist and may even become worse.(2) This study was cited and discussed in the New York Times “Well” blog post “Anxiety Lingers Long After Cancer” by Jan Hoffman.

I recently wrote about the things I do to (attain and) maintain mental health, and in an earlier post I wrote about my choice to live intentionally, to live an examined life:

This business of living intentionally isn’t New Age or mystical or Buddhist or maladaptively introspective.  It only requires pausing in your day, or even in your week or month, to be aware of your interior and exterior worlds. What am I doing? Is it what I want to be doing? Is there a change I’d like to see? Can I bring it about? What path am I on; is it likely to bring me to where I want to go?

I started this practice when I was about fifteen years old. I was a member of a dramatics group and the director used to have us sit quietly at the beginning of each lesson or rehearsal to do a “here and now” exercise. It’s very simple. You start by sitting still in a comfortable position and saying, “Here and now, I am aware of…” and naming what you see, hear, smell, feel. You do this quietly, in pace with your breathing. As you physically relax, you can close your eyes and your awareness gradually switches to the interior world.

By interior world I mean thoughts, feelings, wishes, desires, discomfort, contentment, hopes, satisfaction, anger, delight… a kind of mindfulness. It was a great exercise for me at that difficult age, and it remains so when I am in a tizzy or need to get back in touch with myself.

I was very interested to see that my intuition about using mindfulness to cope with stress and anxiety was borne out in a small Danish study that was published this past April in the European Journal of Cancer.(3) The investigators provided a “structured, eight-week group mindfulness-based stress reduction program (MBSR)” and found that even a year later it had “clinically meaningful, statistically significant effects on depression and anxiety after 12 months’ follow-up, and medium-to-large effect sizes”.

The women participating in the study had been diagnosed with breast cancer at Stage I, II or III and had undergone surgery. I wonder if the results would be different with participants who have Stage IV cancer (advanced or metastatic breast cancer). As usual, however, we mets-ers were not included. (A topic for another post.)

In any case, the statistical results are far less important to me than my lived experience: mindfulness exercises and meditation and living an examined life help me to cope better with stress and anxiety, and that is all the proof I need. Studies like this one, however, might lead cancer centers to provide MBSR or similar approaches to patients in their survivorship programs, and I think that would be a very good thing.

Notes:

(1)See, for example, this page at BreastCancer.org.

(2)See, for example, a UK study published in Lancet Oncology online in June of this year. The abstract can be accessed free of charge at PubMed. (Click)

(3)The abstract can be read free on line at the journal’s website. (Click)

From Denial to Acceptance?

acceptance is keySlowly but surely, cancer is chipping away at my dignity, my autonomy, my self-image.

Last week I agreed to my oncologist’s suggestion of treating my apparent depression and anxiety disorders as a quality of life issue, and accepted my GP’s prescription of an SNRI. I know that objectively that was a good decision. I know that this is one way of taking care of myself and being sure that my needs are met.

Nevertheless, it feels like humiliation. I wrote about that recently, so I won’t repeat myself here.

Back to pain management, a quality of life issue par excellence. For a year or so now I’ve been white-knuckling, trying to avoid taking the narcotic pain relievers and when I eventually do take them, I’ve been taking minuscule doses that have little or no therapeutic effect. It’s not like I don’t know that; I’m reasonably conversant with these dosages.

As I’ve written before (as in this post from about nine months ago), my issues with narcotics are dual. On the one hand, I hate the way they make me feel. I hate that sleepy-dopey feeling, the impaired judgment, the excessive emotionalism, the lack of impulse control, the inability to do things that have to be done. I live alone. I have a house to maintain. After requiring my medical retirement, my employer was kind enough to give me alternative employment that I can do at home when I’m up to it. That has to get done if I want to keep getting a paycheck.

The other issue with narcotics is that I’m mildly allergic to them. My whole body starts itching, inside and out, and so I have to take an antihistamine at the same time as the narcotic. Antihistamines feel yucky, too.

So the decision for me involves balancing two elements. Which will be worse at any given moment: the narcotic-antihistamine impairment and discomfort or the unmanaged pain?

Last night I realized that (yet again) I’ve been an idiot, that my pride and self-will, my “machisma” has been causing me to make really bad decisions. I took a ridiculously tiny dose of Percoset last night and not surprisingly was up pretty much the whole night in pain.

So, a bit more of my self-image crumbled away last night. My image of myself as strong in body, mind and will, as a person who copes, a person who is in control… *poof*. I need to find a new base to stand on, and I’m going to try to start thinking of myself as a person who does whatever is necessary to take care of herself, even when that means adjusting long-held ideas and values.

Reality changes. Fundamental human values, in my opinion, do not change, but other kinds of ideas do. It is time for me to adjust the way I gauge my personal strength. It is time for me to step out of these last tattered remnants of denial and squarely face the reality of where I am with this disease.

I have metastatic breast cancer. I will never be healthy again. My pain and disability will increase. That is reality plain and simple, and as I wrote in a post about another issue:

Accepting an unpleasant or bad situation – war or abuse or cancer, for instance – doesn’t mean that I endorse it or like it. It just means that I have looked at reality and noticed that it is real. Not accepting reality is fairly insane. I can’t even work to change something until I have noticed and accepted that it is real.

At the same time, I am still the same person I was before diagnosis. I am still bright, I still have talents, I still have the ability to love and be loved, the ability to work effectively. The disease has not yet taken everything from me, and I still have the ability to cook, to watch movies, to read or listen to books, to be in touch with friends, to tell abysmal jokes, to help others and be helped by them. I can be grateful for these things while still acknowledging the devastation my disease has wrought.

It’s not going to be easy, but I’m pretty sure that this what is the landscape of the next part of my journey will look like.

The Electrician Didn’t Come

The urge to write has its own mind, body and force of will. Holding it back would be like stopping a flood with a spoon.I want to write a blog post today, but I don’t have a topic. I mean, it’s not like there aren’t plenty of topics floating around. I could just reach out my hand and grab one, but none of them are really calling my name. Yet I have the urge to write.

When I get the urge to write, it’s like needing to sneeze. No way on God’s green earth am I able to repress it. It’s got to come out. Even on those rare occasions when I’ve been without computer or paper and pen I’ve “written” essays or articles or poems or songs in my head because when that writing feeling comes upon me, I have to write. No way around it.

So I need to write, to scratch that itch, to sneeze, to breathe deeply because I suddenly realize I’ve been holding my breath. That’s what it feels like.

Let’s see. I could write about my last unpleasant encounter with my oncologist, whom I generally like, but I don’t feel like getting into all that right now.

I could write about my garden, which is looking much better since I fixed the computer-timed irrigation that had somehow gotten turned completely off. Funny how regular watering improves the look of a garden in summer. But that’s not a whole post.

I could write about my struggles with myself—my pride, my skewed self-image—in terms of accepting the limitations of my illness, using my walker, taking medicines as prescribed instead of deciding I know best. (I generally take far less pain relief than the doc wants me to, for example.) But I’ve been there and written about that so many times.

I could write about some new interesting research developments in the world of cancer treatment in general and breast cancer research in particular, but I’ve come to realize that I’m a poor science writer. (Oh! Does anyone have any ideas on how to learn to do that well?)

I could most certainly write about certain political developments in my country and around the world that make my blood boil, but I’ve pretty much decided to stay away from politics in this blog. I don’t want it to become divisive.

So then: what shall I write about?

The electrician was supposed to come to fix a couple of things this morning, but it turned out the police had my part of the city blocked off. I heard the helicopters and sirens, but I don’t know what happened. Anyway, the electrician couldn’t get through. He’ll come on Tuesday.

While I was waiting, though, I was able to go out into the sun and trim back the sage that is growing over the pathway next to it. I can’t do much gardening at all these days, so it was fun even to go out with my walker and lean over and do a little bit of trimming. I enjoyed the sun and the smell of the flowers and herbs and the sounds of the bees and the birds and the feeling of the herbs on my hands and my fingers in the dirt.

My new medicine is causing some nausea (an expected and transitory side effect), so I took a piece of chicken out of the freezer to defrost. I’ll make some chicken soup and rice or something like that later on, I guess. I’d like to have a salad or gazpacho, but I’m not sure my stomach would handle it.

Here you are: over 600 words about nothing because the urge to write came upon me. Does this happen to you, too? And as long as we’re talking, is there anything you’d like me to write about the next time I get the urge and I’m light on topics?

Pain, physical and mental

Collage of words: pain, anxiety, stress, depressionFirst a quick update on the cancer front. There is new pain in my ribs. The diagnostic radiologist didn’t see anything on the ultrasound, so she’s recommending a PET-CT as the next step. I haven’t been able to reach my oncologist (who is the one who has to order it) through the clinics where she works, so I’m going to call her on her mobile. I don’t like to do that, but after discussing it with my GP, that’s what I decided to do. I’ll try to reach her today. I don’t like being importunate and I always avoid taking advantage of anything that might smack of privilege, so it was a difficult decision for me to make.

Then there are the mental health issues. When I saw the onco a week or two ago I discussed my anxiety with her, and we talked about the prevalence of anxiety in people with cancer. She was very emphatic about it being a quality of life issue and strongly encouraged me to talk to my GP about it.

Now, I have never explicitly stated in this blog that I used to be a mental health professional, but perhaps the time to “come out” has arrived. Like many MH providers, I apply a double standard to myself, preferring to think that I can deal with just about anything using my own resources. Like many MH providers, I’m full of bull puckey. In point of fact, I am well past the point at which I’d suggest to friends, let alone patients, that they need help.

So I packed up my false pride and machismo (machisma?) and asked my GP, who is a former colleague, what he thought. He kindly and matter-of-factly asked a few open questions and offered me Venlafaxine (also known as Effexor), a drug that is used for depression, anxiety and even neuropathic pain (like post-mastectomy pain syndrome). I’ve agreed to give it a try, along with my usual routine of quiet prayer and meditation, mindfulness exercises and as much exercise as my exhausted body can tolerate.

So that is what taking care of myself looks like today. Writing openly about these difficulties is also a way of taking care of myself, and maybe also of encouraging other people to take care of themselves. That is the paradox of writing a blog like this. I started it for myself, and its primary purpose is still to provide an outlet for my thoughts and feelings. Over time, more and more people have started reading it, and some people have told me that they are able to relate to it and get something positive from it. That makes me very happy. Thank you.

(When I get news about the PET-CT, I’ll post an update here or on the blog’s Facebook page Telling Knots, the 30%.)

Cancer is Not Pink: Men with Breast Cancer

This is not a picture of breast cancer.

This is not breast cancer.

I am a wimp.

It is so easy for me to sit here and expound: “I am so marginalized! The breast cancer awareness community doesn’t talk about people with mets. We scare them. That 30% figure just doesn’t bear thinking about. That’s why they marginalize us.”

And we are marginalized. That is a true statement. But so are women with mental health issues who have breast cancer. And migrant women. And refugee women. And women in war zones. And homeless women. That is all true.

But you know who is really marginalized? Men with breast cancer. How often are they even mentioned? How often do you (do I?) think of men when thinking of people with breast cancer? Pretty close to never, I’m betting.

Yesterday I encountered Breast Cancer Brothers, a Facebook community page not unlike Telling Knots, the 30%, and I had the opportunity  to exchange a few words with a man who, like me, has metastatic breast cancer. I received a nice comment from his wife, thanking me for sharing their family photo on the 30% page.

My world was jolted.

I admit that it is not very often that I look at my situation and think how much easier it is for me than for someone else. Yes, people have said really stupid things to me about breast cancer, but can you imagine what the men have to go through? I cannot, not really.

I put out a request on Breast Cancer Brothers inviting any man with breast cancer at any stage to write a guest post for this blog. One man has accepted the invitation, which makes me very happy. Maybe more men will agree, too. I’d love that.

Cancer—breast cancer—is no respecter of persons. Cancer does not care if we are rich or poor, married or single, gay or straight, independent professionals or temp workers in a warehouse or street dwellers. Cancer does not care if we are male or female. Cancer is not pink.

I’d like to make a request of everyone who is reading this post: please go over to Breast Cancer Brothers and show them some support. Like the page, leave a comment. Show them that while some of us may feel marginalized, while some us truly are marginalized, we will not marginalize each other.