Plans, progress and dinosaurs

This time last year I was in the midst of my comprehensive exams, trying to pull together my research ideas into a coherent whole, enough to convince the examiners at UBC that I had enough knowledge to move into the research phase of my doctorate.

This time last year I was in a different job, in a different province and married. Things have changed.

It’s axiomatic that doing this kind of in depth introspective work alters you. Also that you’ll smugly assume at the beginning that you are somehow exempt from that. You’re not.

This last year has reminded me that when we think we have it all figured out, life throws us a curve ball. Or as the old Yiddish proverb goes – Man plans and God laughs. Which reminds me of my all-time favourite:

Dr. Ian Malcolm, “God creates dinosaurs, God destroys dinosaurs. God creates Man, Man destroys God. Man creates dinosaurs”
Dr. Ellie Sattler, “Dinosaurs eat Man….. Woman inherits the earth” (Jurassic Park)

 Yeah, OK, not really the same but chaos theory, am I right?

This last year has also shown me the need for cheerleaders. As well as from my EdD cohort (shout out to Chickadee Nation!) I draw a lot of doctoral-type support from Twitter. The recent #ImmodestWomen tweets have got me cheering. Women with doctorates are changing their Twitter handles to ‘Dr’ to make a point that if they’ve achieved something, they should be able to be proud of itPostings from people doing doctorates can also be inspiring, encouraging and motivating. I love reading the “I finally did it” posts with the pictures of happy people in funny hats. The “OMG why did I start this” tweets can be funny or sad – depending – but usually trail a number of comments like “you got this” and “keep going!” I’d like to think if I was having a terrible day/week/month I’d get my share of cyber hugs as well. Recently my virtual buddy Janice posted about taking a break – people shared with her how hard it had been for them, and how taking a break was sensible and necessary if she needed one. It sounds trite (and I would have scoffed at this three years ago) – but sometimes it really IS about the journey. We don’t want to burn out before we get there.

So after a move to Alberta (home of many dinosaurs!) I’m unpacking my notes, downloading the reference management software on my new laptop, and getting on with it. Or starting to. Or thinking seriously about it. I’ve posted the “things I need to do to be called Dr. Bolderston” table on my wall (see pic!) and put up my “you should be writing” memes so it’s a good start.

Even though my dissertation is about 11% done* since I started my EdD I’ve developed an LGBT healthcare research niche, published, presented and changed a few things for the better. It’s hard to separate the doctoral work from my daily practice (which is the whole point of a professional doctorate – so well played UBC). As an example, I was talking to a volunteer patient last week – she generously gives her time to be “treated” by our radiation therapy students at the University of Alberta. She told me that last year she had to play a patient with prostate cancer. I said, that’s amazing! It must have been so cool for the students to learn about trans patients. She looked at me strangely and said – well, no, we just didn’t have any men volunteering! But think of the missed opportunity, I said, we could rework the whole scenario! I’m not sure if she is going to sign up for that but it’s an easy way to queer the curriculum just a little bit. Impact – right?

So whether I start on my discussion section tomorrow, or next month – graduate this fall or in 2021, I’m (89%) OK with that.  Just remind me when I post the “OMG why did I start this” tweet!

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*probably a generous estimate

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Do I look gay enough?

Last week was my last one at BC Cancer. It was also my last week working in healthcare, after 30 plus years of being within earshot of the radiotherapy treatment machines beeping away I’ll miss the clinical environment. I’m moving provinces, to a job teaching and researching which I know I will love, but still there’s a sense of loss as I say good bye to helping patients find the exit (up one floor), working with clinical educators (universally awesome) and eavesdropping on waiting room conversations (some jaw dropping, some touching). I marked my last week with a lot of goodbyes, an evening of too much beer and some lovely speeches and a photo shoot at the Vancouver Cancer Centre.

The session was organised by our director of patient experience, to take some stock photos for our education material, posters etc. I was asked to take part because of a (mostly) off the cuff remark I made at a meeting a few months ago that I wrote about in this blog. We’d been reviewing our patient education material to see if it included representation for LGB and T people – it mostly didn’t. The images had been carefully selected for ethnic and racial diversity but (to me) no one looked remotely gay enough, the smiling women were all femme and long haired and all the couples were heterosexual. No one seemed to care much except me and a gay colleague – we were videoconferencing and had a lot to say to each other with the microphone safely muted! We both know that representation matters, that LGB and T patients scan the healthcare environment for signs of safety and images on walls and in brochures are important.  A good example is the Canadian Cancer Society booklet “Sexuality and Cancer” (below). Finally, in a fit of frustration, I said that I’d volunteer to pose for a few stock pictures (I think the words I used were I’d be happy to “butch it up”). There was an awkward silence and we moved on to the next agenda item.

So, I was surprised to get an email inviting me to pose as a patient for the photo shoot last week. I felt considerable pressure not to let the side down (especially after my comments!) That morning I spent a lot of time staring into my wardrobe – I skipped the usual floral top and earrings, going for a baseball t shirt and denim jacket. I’d just had my hair cut so spiked it up. Was that enough? Was I identifiable???

The shoot was done in a crowded clinical area with patients coming and going around us. We had a pharmacist in a lab coat playing “the doctor” and a room full of patient volunteers. I felt a fraud as I listened to their stories, one woman with late stage cancer talked about her previous two terrible and current wonderful oncologist and how she’d learned not to put up with bad healthcare professionals (“time is too fucking short” she said). I knew one volunteer from other groups and sprang it on her that she was going to be my partner. She took it well. When the photographer asked for “family” shots he looked at the man next to me and suggested we come in. I grabbed my new lovers hand instead and we went for it.

The first scenario was “bad news” – I was the patient (only fair as my other half had already been through that).  We giggled a lot, but also managed some serious award-winning acting with lots of loving embraces, hand holding and emotion. Then we were told to “talk” to the fake doctor (who did a good job of telling me about my upcoming chemo regime). We were encouraged to use our hands and gesticulate (I guess talking alone doesn’t shoot well) and we took a lot more pictures.

As I left (and hugged my temporary wife farewell) I weaved through actual patients, attending a new patient clinic, some of whom would be getting bad news for real. I hope some of the pictures we took make it into the waiting rooms and elevators, and I hope I looked gay enough – that we looked like a real couple. I’d love to think that in a few years someone sees me in my baseball shirt and denim jacket and relaxes just a tiny bit. That they feel that the cancer clinic is a place for them. It was a fitting way to say goodbye.

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We’re all stories in the end

This quote (from Dr. Who)  has been rattling around in my mind for a while*. When we last left off, I was writing stories from the discussions with my participants. I’d written three and a kind of prose poem thing that I wasn’t entirely sure about. They’re all in different voices, or styles – one is from the viewpoint of a patient partner, for example. I’ve mined the transcripts for ideas, and the writing was surprisingly easy and unexpectedly enjoyable. I’ve never delved into fiction before and, although this was shaped by our conversations, it was very different from my usual writing. After four I hit a roadblock. I knew there was something else I wanted to say but I couldn’t unpack it. I wrote a few false starts, tried to write in the first person, wreathed my idea with heavy figurative language – nothing worked.

 

I met my three participants again recently, we sat in a borrowed house and ate cookies and I read them the stories. I’d anticipated blank looks, comments like “well, that wasn’t exactly what I said” but they were receptive and encouraging.  They got it. We talked about the missing piece and Naomi, who is the quietest one, said something that stayed with me. My final story will be jumping off from that, and will pull all three of my participants back in, as they should be, front and centre. After weeks of being stuck and irritated, I think I can see the path ahead. There’s still a long way to go, I have to write “back stories” for each piece – showing the relevance of what I wrote and linking it back to the wider conversation and body of knowledge. Then I have to build the rest of the dissertation – the traditional bits like the literature review and conclusion. But the heart is the stories and I think it’s starting to beat.

 

Here’s an example from one of the false starts– it was meant to be a build up to an encounter with a gay patient that left a lasting impression. I decided not to use it, it didn’t fit with the conversations we’d been having and felt too similar to one of the other pieces. But it’s a little look at what I’ve been doing and tiny part of my own story from back in the day.

 

I’m late again, lacing up my trainers at the last minute and hurrying for the Wellesley subway. It’s January, the mornings are dark, and it was hard to get out of bed. Anna has a day off and was still asleep. I made tea and instead of getting in the shower crawled back into bed with her for an extra twenty minutes. My shift starts at ten but it’s nine already, and the trip is longer that the time I have. Checking my purse for transit tokens, my paperback and lunch money I head out into a deep freeze morning. I’m underdressed, didn’t grab my scarf, and my face is immediately cold. We’ve been here for seven years but still the Ontario winters are a shock. On really cold days my nose hairs freeze, a deeply unsettling feeling. Sometimes my legs are numb when I stumble into the cancer centre, the Marks and Spencer’s thermal undies my mum sent still in the drawer at home. Today, though, I am in luck. The connections work out, I’m off the subway and onto the bus in less than half an hour. I even get a seat. It’s warm and steamy, the windows are fogged and it’s hard to see out as we head along Davisville, adding passengers as we go.

There’s a steep turn into the hospital and I shuffle forward, clinging to the pole among the crowd of people pressing towards the exit. Steeping off the bus, I thread my way between patients walking slowly, unsure where to go or shuffling towards chemotherapy appointments. Through the automatic doors into the sun filled atrium, smiling at the white-haired volunteer in her yellow smock, I impatiently press the elevator button. I’m still going to be late, just a few minutes, but I still need to change into my scrubs. If I’m late, someone on the early shift will be late for their coffee…

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*Fun fact – the last time I mentioned Dr. Who was back in October 2015!

LGBTQ representation matters: images, patient material and safe spaces

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I love this image of a smiling person with their dog (SPWD) used by Macmillian in the UK as part of their support for LGBTQ people affected by cancer. I don’t know how SPWD identifies sexually or what pronouns she (?) uses that fit with her (?) gender identity but as well as looking happy SPWD does look distinctly….non heterosexual, dare I say queer? I think she/he/they would firmly fit under that wide umbrella definition. Why is this important and why do I care? I’ve been pondering representation (visual and otherwise) lately as I dive into my dissertation and a recent discussion at work has got me thinking.

I’m part of a group looking at LGBTQ patient experiences, and how we can make them better. Actually, there is a lot of solid evidence out there so the HOW isn’t really the question – it’s the WHEN and the WHY DON’T WE that preoccupy me.  Very broadly we know that improving intake forms (asking about sexual orientation and gender identity); making the space welcoming (signalling safety) and educating staff are three key areas. Where I work, I am really happy to say, we’re starting to change all of these things. We’ve amended our intake form and we have some grant money to develop staff cultural competence training. Training is really important – if we’re asking about sexual orientation we need staff to understand why, and how the information is relevant to that patient’s care. It’s also important to teach people why LGBTQ people might feel uncomfortable in a hospital or clinic, why they might be reluctant to come out and why just seeing a “safe space” sticker (or a rainbow pin on a staff member’s lab coat) might help a tiny bit.  Cultural competence training is important because that pin or sticker means nothing if we then misgender that patient, or fail to recognize their “friend” is actually their partner of twelve years.

What does this have to do with SPWD? My meeting was to look at the results of a review of some patient education material routinely given to patients. The booklets and pamphlets were examined to see if they were inclusive for sexuality (LGB) and gender (T). The best example was a pamphlet for screening for cervix cancer which listed groups of people who should be screened that included:

  • Women in a same-sex relationship and
  • “Transgender individuals” with a cervix

Great! The worst examples were the very, very pink flyers for mammography that didn’t list men (including trans men) as possible candidates and were full of infographics that used (pink) skirted female icons and photographs of very feminine women of various ethnicities.  None of this was very surprising.  What was surprising was the general consensus in the room that the organisation had done their best, there were only so many “populations” one pamphlet could cover (replacing one of the several femme women with someone like SPWD wouldn’t be hard) and….adding same sex couples and/or people who visibly flagged as queer might signal to heterosexuals that this material isn’t aimed at them. That was my favourite. As if I wouldn’t pick up the booklet that was asking me to donate money because it had a bride and groom on it, or the booklet on sexuality and cancer that had no obviously queer couples (that’s a bad example, most of our material has little or no useful information on queer sex).

These examples might seem trivial, but they are part of the landscape in our cancer centres and hospitals. They matter. They signal that we have thought about being inclusive, being welcoming and are willing to move from our positions of “it’s good enough” to “we could do better”.  Yes, there is only so much we can do but next time we redesign a booklet, or edit an instruction sheet we can also make sure it isn’t just one more barrier for our LGBTQ patients to climb over.

Image: Macmillan Cancer Support, UK

Things get personal

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The long gap since my last blog has been niggling at me. It’s not that things haven’t been happening, it’s more that too much has been happening. I started a blog about “impact” a few weeks ago that got way too intense too soon. Then I questioned why I hadn’t posted it, and who was my audience? I went into an introspective spiral about how the tone and purpose of this blog had changed over the last two (!) years. It’s shifted from a light-hearted look at a new university world to what it feels like to be emotionally invested in your research. It’s become very personal. We use the word messy a lot in class, that’s because this stuff is messy, it spreads and gets everywhere so I shouldn’t have been surprised.

In the last six months my marriage has ended. The course wasn’t the main cause, but it helped knock out a few foundational supports. Despite the fact that my ex-wife has been such a large part of this work. I’ve bored her to tears with stories and drafts, agonised with her about whether I could do it and drained our joint finances with school fees. I told my supervisor about our split, she said “Yes, that happens a lot with this kind of study”. I jokingly said there should have been a release to sign but I probably would have risked it anyway. It really wasn’t the kind of impact I had expected.

It’s been a seismic event; the ripples are still rattling the windowpanes. As we move into the new part of our lives my ex-wife and I find ourselves looking at what it meant to be married, what it means now. We’re trying (as many couples do) to remember why we were together in the first place, and we’re largely succeeding. We have new partners, we’re working out how to live this new way without regret or rancor.

I find myself looking at assumptions that are at the centre of my research question in light of these changes, what does it mean to come out now in 2018? What does it mean to be a lesbian outside the safe harbour of a marriage? What does this mean for my sexual identity? Anything? Nothing? Doing my interviews last year, I was back at the place my marriage began. There were echoes of it everywhere, the offices I worked in, the people I knew who asked about my wife and the boys, my participants who knew us as a couple for twenty-something years. How does this affect my data, I wondered like a good qualitative researcher, my strong emotions and this bittersweet sense of love and loss?

I figured, I can let this paralyse me, stop writing, wallow for a while. Or I can realise that this is all part of it. Whether it’s a job change, a child leaving home, the end of a relationship – it’s happening all the time to all of us. I remember hearing stories from our previous cohorts and feeling smug that nothing like that would happen to me. I forgot the fundamental rule that life is fragile, full of the unexpected.

There are, of course, no easy answers but I move forward, juggling this as one more thing. I want to continue this blog, but needed to be honest about where I am. I’m hoping sharing this will unblock me and set the stage for the next and final part of the process, writing up my dissertation. As always, stay tuned!