a letter to pre-cancer me

me and mike

Me and my Mike, before the cancer.

Dear Sue:

On February 6, after two mammograms, one ultrasound and two breast biopsies, your family doctor will phone you to tell you that you have breast cancer.  The days following will feel like you are looking down the barrel of a gun.

Here are ten things I wish I could have told you, my numb newly-diagnosed self, six months ago.

  1. There is a lot of waiting. It is better to accept this rather than agonize over it. You are at the mercy of a booking clerk’s phone call at all times, particularly in the terrible purgatories between diagnostics and when you are actually diagnosed, and the time between diagnosis and the beginning of treatment.
  2. Tightly hold onto the ones who show up for you. Love the ones you are with. My husband has been my rock. My children are my greatest comfort. Be open to new people coming into your life. (My Twitter friends, many of whom have chronic stuff going in in their own lives, have really stepped up for me, as have my old colleagues from the children’s hospital where I used to work).  Allow your husband and kids to help you. This can be particularly difficult for those of us who are used being the nurturers. You may feel vulnerable and guilty about this, but that’s okay. Be openly grateful for their love.
    On the other end of the spectrum, it will be awful to be openly dumped, ignored or ghosted by family and friends. (The same thing happened after Aaron was diagnosed with Down syndrome, but that doesn’t make it any easier this time around). Try not to ruminate on these lost people. Their poor behaviour reflects more on them than on you. If somebody says something stupid, shake it off the best you can and consider this article: How not to say the wrong thing. It will make you feel better.
  3. Hang onto the little things, for they may end up being your big things: the chirping birds, the smell of lavender, the flowering cherry trees, some old jazz on the stereo. There is great value in meditation and simply breathing – I stumbled upon these simple strategies late, but they have been my calming saviours when I was under the radiation machine, waiting for the doctor in the clinic room or just generally freaking out.
  4. Try out different things to help you heal. Commit to long walks. Attend mediation classes. Ask about relaxation programs and therapy services at your cancer centre. Try out a support group. Go for a pedicure or massage. Canadian Cancer Society offers a Look Good, Feel Better Program, which is about wigs and how to apply make-up, but it is a pleasant way to spend a couple of hours. Look into supportive cancer care organizations, like Callanish or Inspire Health or Wellspring.  Short rant: I have been asking and asking about mental health services since early February and not one health professional mentioned Vancouver-based Inspire Health, which offers free classes like: yoga, meditation, exercise, art therapy – which I totally could have used for stress relief. This angers me, as it feels like I have been left to suffer, which brings me to…
  5. You are on your own to look after your mind. I was shocked how little the mind-body connection is considered in the hospital setting, even though science has definitively told us that stress is not good for you. The hospital will treat your tumour, but not you. You have to figure out your own support and go outside the cancer agency to find help. (See #4).  Also, hang onto that compassionate member of your health care team (for me, that’s my family physician, who calls me on the phone just to see how I’m feeling). These people are special and rare and can compensate for the other, less kind folks you will inevitably encounter.
  6. Side effects suck. Side effects are a real thing that took me by surprise. They are also often dismissed as trivial or minimized by clinicians – a hematoma the size of a grapefruit under my arm! Tamoxifen-induced insomnia! Fear of lymphedema! A burned and scorched breast! Weight gain! Debilitating fatigue! Permanent radiation tattoos! What is a big deal for patients is often not a big deal for clinicians. I’ve found that online forums, like Cancer Connections help – you can commiserate with others going through cancer, or at least read about what to really expect.
  7. There’s no shame in asking for sedation before procedures or anti-anxiety meds to help you through this terrible time. Always be brave and pipe up because it may not be offered to you otherwise.
  8. Use your voice. Ask if you would like a warm blanket, or are uncomfortable, or have questions. Don’t forget, in Canada, taxpayers are actually the funders of health care. It is your right to speak up. (Donald Lepp’s essay, The Art of Complaining: Going Rogue, has some good advice on speaking up at the system level).
  9. There are many affronts to your body. These are not things that you could ever dream up as a layperson. For instance, when they say they will ‘inject dye’ in you before the sentinel node removal, they mean a person in radiology will actually stab your nipple with a needle full of blue dye, and that blue dye will remain in your nipple for months afterwards. There are other indignities: fine wire insertions, scars, bruising, itching and burning. These affronts are weird and will make you feel especially vulnerable and fragile. So you must, more than anything else, please please…
  10. Be kind to yourself. My therapist gently suggested that I treat myself as I would treat my beloved daughter Ella. This advice helped.  Cut yourself some slack, my lovely.  As Brene Brown says, You are enough.  And as my dear friend Isabel Jordan has reminded me when I needed it the most:  You are the Queen, Sue. Listen to all these wise women.

I’m not gonna lie, this is going to be hard.  But you will do it because you must.

Love,
Future Sue.
ps:  Never forget it is love that is going to help you heal in the end.

an open letter to radiation therapists

June 9, 2017

Letter to folks at Radiation Therapy

I’m done! I moved a crabby, wounded animal on my first week of treatment through to feeling a glimmer of joy today that this cancer business is done (for now).

You have helped me these past four weeks. Thank you. I always presumed competence, but it was your kindness and humanity that set you apart. Here are the small things that meant the world to me:

  1. Eye contact, introductions and smiles.
  2. The offer of a warm blanket.
  3. Chit chat – about the weather, colour of my nail polish, my family, plans for the day.
  4. Helping me on and off the table.
  5. Covering me up as much as possible.
  6. Telling me what you were doing as you went along. (This lessened anxiety, a lot).
  7. Your respectful treatment of my husband and son when they came in.
  8. Being open to answering my questions. Prompting me to ask questions. Saying, ‘what questions do you have’ instead of ‘do you have any questions’
  9. A reassuring hand on me.
  10. Not appearing rushed, even if you were.
  11. Your demonstrated compassion: empathy for fatigue, burning, itching, how crappy this whole experience is.

I am grateful for all those so-called little things. I think medicine can cure (sometimes) but it is the love that actually heals us patients.

Please keep doing these things, even if the system tells you otherwise. They matter.

Warmly,
Sue Robins.

(Shared with the Radiation Therapists on my unit at the cancer agency (and their manager) on my last day of treatment.  Although I’m quick to provide ‘constructive feedback’, I also strongly believe in saying thank you too).  

I am a Patient & I have had an Experience

Screen Shot 2017-06-08 at 3.51.06 PM

My treatment is over now and I am running out of excuses for naps, begging off obligations and almond croissants.  I am achingly exhausted earlier and earlier every day and I have been told this fatigue will continue for several weeks. This cancer treatment is killing my social life.

As my oncologist says, two minutes of radiation is like spending the day in the hot sun, so I’m lurching around with a version of constant sunstroke.  My boob is super itchy which is an annoyance but not debilitating. I asked the Radiation Therapists, why do some people get burned and itchy and some do not and they did not know.  I have no idea what research is going on over at that fancy Research Building across the street, but apparently it is not research on side effects like itchy boobs.

I promised not to be complain because I did not need chemo and I did not need a mastectomy and for those reasons I am lucky.  Or rather, I am a lucky unlucky person because I still have breast cancer and being diagnosed with cancer has really messed me up, mostly in my mind.  I hope this blog isn’t negative.  I hope I don’t sound like a victim. I’m just trying to be a real person.  My experience having breast cancer has been surprisingly complicated and not all pink ribbons and teddy bears.  It has shaken me to my core.

Two weeks ago, I had a voice mail message from a manager at the cancer agency.  Apparently someone had forwarded my blog and told him to call me to talk about my ‘experience.’  I arranged to meet with him and Mike and I showed up to his windowless office before one of my daily radiation treatments.

He was a pleasant fellow, new to his job.  It was clear I had been labeled a ‘complaint,’ when in fact I had not contacted them with a complaint at all.  I was only writing about my own personal experience for my own blog.  True, my blog is public, but it feels creepy that my blog is being monitored in this way.  I felt reported.  We chatted about the patient experience in general and I emphasized that I hadn’t complained, but that I did have some ideas for improvement.  He wrote down a few things and that was that.

Later, I asked the people who had forwarded my blog for an in-person meeting with them and suggested that maybe they could have asked me if I wanted to have a manager  contact me.  I would have liked some choice in the matter, as opposed to someone assuming I wanted a call.  I got the ultimate brush-off message back and my request for a meeting was totally ignored.

Feeling discouraged, I then followed up, sending on a couple of general videos about patient experience (this and this), asking to meet with the administrator in charge of Patient Experience.  I am a Patient and I have had an Experience after all.  I sent that email ten days ago and have not heard back. I can take a hint.

It has always puzzled me why patients with feedback are silenced and pushed away.  Don’t professionals learn through challenging situations?  Aren’t ‘complaints’ just constructive feedback that can be used to improve care and service?  Am I the most naïve person on earth?

With all this ignoring of my requests and emails, I’ve realized that I’ve been labeled as ‘difficult’ – maybe even ‘crazy’ or ‘hysterical’ (terms I’ve heard used by staff for families – usually mothers – at children’s hospitals).  This is humiliating.  As I told the manager, I want to help. Patients have good ideas and aren’t actually stupid.  But I do not have any credibility at this cancer place beyond being ‘only’ a patient.  To administrators, patients are a generic cluster of diagnoses, not real people with ideas or opinions.  We are all a bunch of nobodies.

It was silly, or maybe arrogant, for me to think they want my help.  When feedback from patients is solicited by hospitals, through tools like surveys and comment cards, it is okay.  But when patients approach them with feedback that is not overtly asked for, we are shut down, brushed aside, minimized, gotten rid of, seen as a problem that needs to be handled.  I see this now.  We are supposed to shut up and be grateful for care.  Me and my itchy boob will zip it for now and stop rabble-rousing with the organization (and please know that I am grateful for the care, and brought in nice chocolates for the Radiation Therapists to my last appointment) and move forward.

Maybe one day an authentic chance to give feedback will be offered to me.  I was given a patient satisfaction survey to fill out a few days ago, but it had only a tiny spot to write ‘one or two ideas for improvement.’  I dutifully scribbled in a couple of thoughts – about orientation and waiting rooms – but I actually have about 100 ideas for improvement, but there was no room for them on the page.  No matter.

Currently, I am sick of the whole health care system.  Now is the time for me to rest, begin healing and scratch around to find a little bit of peace in my heart.  There are books to read, walks to be taken, music to be listened to and, most important of all, people to love.  Thank you to all who have shown up for me.  xo.

where’s my freaking silver lining?

MndfulBeath

I keep reading that people who have had cancer are now better people: they know what’s important in life, focus on the positive and appreciate every moment.

Here’s what cancer has done for me:  uncovered all my unresolved pain, given me a ball of anxiety that has set up permanent home in my stomach, caused me to waver in my confidence and made me feel even more vulnerable than I was before. (Recall, I am the person who transferred out of nursing because I wasn’t tough enough.  Plus, I’m a Pisces, astrology sign of the super-sensitive).

That’s some silver lining, cancer!  It is more like an ugly brown lining! Thanks a lot cancer!

Obviously I have a wee bit of personal work to do.  I remain shocked how cancer care in this province totally disassociates the mind from the body, and how mental health isn’t integrated into the medical care.  So I’m pretty much on my own with taking care of my mind.

Here’s one thing I’ve discovered that has helped so far:  breathing.

Meditation is a practice that can take a lifetime to master.  My sister-in-law referred me to The Calm Monkey right after my surgery.  I dragged myself to one of Wendy Quan’s sessions, sore and particularly raw.  I left feeling a bit better, with a couple of counting practices that I actually used under the radiation machine to calm the f*ck down.  I also attend the cancer agency’s weekly relaxation classes (Which I’m grateful for.  Please don’t cancel them!).  There I’ve learned you can trick your body into feeling like it isn’t under stress, even when it is, just by breathing.

I’m not into woo-woo stuff, but meditation has been scientifically proven to help with stress.  (Look, it is even sanctioned by the Mayo Clinic).  Mindfulness is a practice, so it takes practice.  I think of it as a little gift of self-compassion.   I’m such a newbie that I have no actual meditation advice to give.  But if you are feeling stressed and anxious for whatever reason, here are a few articles that have helped me:

Surely you have three minutes to spare?  Try this.

New York Times has a super Meditation for Real Life column.  How to be mindful with a barking dog!  How to be mindful while holding a baby!  These are sweet and easy to do.

My friend Louise Kinross has published a great interview in Bloom about how mindfulness helps with depression and stress in families who have adult children with disabilities.

The Calm Monkey’s blog posts have suggestions for beginners.

Now everybody does cancer differently.  Everybody does life differently, too.  But whatever you do, however you do it, my friends, don’t forget to breathe.  Inhale.  Exhale.  It is a good place to start.

just show up

Screen Shot 2017-05-26 at 5.03.58 PM

A young woman who is dear to my heart recently posted this to her Facebook page. Her dad sadly died earlier this week.

If you have something to offer, a meal to make, time to visit, just show up or give if you can. I can’t tell you what we need. We have no idea. So just show up.

This is the wisest thing I’ve ever read in relation to a loss or crisis.

Just show up, however you are.   That’s all you have to do. I am grateful to those who have continuously messaged me to see how I was, even if I responded only sporadically. Many of my old colleagues from the children’s hospital I used to work at have been exceptionally good to me: meeting me for coffee, checking up on me, sending me bits of inspiration. I’m lucky to know many mama bears who also have kids with disabilities – they understand that you are not guaranteed a pain-free life. They meet me for lunch & walks and send me funny gifs. I’m grateful to my adult daughter who phones and FaceTimes me regularly and texts me every single day. My eldest son sends me emails, always signed with love. My youngest son knows I need extra comfort – he pats me on the hand, carries the groceries and we watch cooking shows together in our pajamas.

My dear husband is my rock. He works two blocks away from the Cancer Agency and unfailingly meets up with me for coffee or a quick hug every day. Once he surprised me by coming to the waiting room and I was pleased to show his handsome self off to the other ladies. He always shows up for me, even though I know this cancer has hurt him deeply too.  This is in sickness and in health.

Just show up. I, too, have to show up. I have to show up to treatment – Monday to Friday for twenty days, without fail.  Each day I show up differently:

Day 1: I was furious and wounded
Days 2-5: I felt angry and crabby
Day 6: I walked in like a boss, strong and confident
Days 7 & 8: I was pained, terribly hurt and broken
Day 9: This was my worst day yet, rock bottom, sad and despairing
Day 10: I actually felt a glimmer of okay

How I show up affects my perception of my experience. On day 1, when I wrote Susan Gets Radiated, I was very low. On day 7, I observed the unfriendly radiation therapist – the one I referred to in my post – tie up another patient’s robe for him and pat him softly on the shoulder. I was not feeling angry that day, and I felt myself softening towards her. Yesterday I showed up in tears and admitted that I was having a rough day. She reassured me in her usual brisk way, but she also extended a tiny branch of kindness, commenting on the colour of my toenails. Less distracted by pain, I saw her in a better light now.

My subsequent Radiation Therapists have been gentler and friendlier. Last week I brought Aaron in and one young RT was exceptional in taking the time to explain everything that was happening in a way my boy could understand.

On better days, the bad part of the patient experience is still there (The price of parking! The blaring TV!), but I notice other things too: the housekeeping lady who chats with me in the elevator, the warm blanket, the tea cart that shows up in the waiting room, the way all the staff introduce themselves by name. I’ve figured out that people bring their dogs into work on Fridays. Finally I caught wind of someone playing the piano in the lobby.  My vision is not as blurred by fear as it was the first day.

I wish these tiny touches were more consistent, but I grab onto them when I can. I have a theory that the whole patient experience should be designed (with patients) around our worst possible day, which is often our first, most scared day.  Then these small comforts that directly contribute to healing are there all the time, every day, no matter what.  I strongly believe that hospitals should be healing environments.  Medicine can cure (sometimes) but it is always the love that heals.

Today was a better day.  Mike was back home after being away on a business trip and we carpooled to the hospital together, listening to CBC Radio in comfortable silence. I went for a walk before my appointment and struck up a conversation with a lady in the crosswalk about pedestrian safety after we were almost side-swiped by a truck (!). We continued walking together, chatting for a couple of blocks. I stumbled upon a food truck that served Taiwanese Lemon Tea. I was thirsty so I stopped to buy one and I asked a fellow customer who was holding her tiny newborn – oooh, how old is your baby?  For the first time, I noticed that there are actually hundreds of tiny white flowers blooming right in front of the Cancer Agency. The Vancouver skies were uncharacteristically blue and sunny today.

Inside the building, I didn’t have to wait to see the doctor – my name was called right away. My oncologist didn’t have his regular stool in the clinic room, so he hopped up on the treatment bed and I sat on the chair sipping my lemon tea and we talked about his philosophy on why people get cancer. (Rogue cells mostly, he concluded).

Later, when I was lying in the stark radiation room, Abba’s Dancing Queen played on the speakers. Some days I can’t hear any music at all, but today I did, loud and clear. I closed my eyes during treatment as I always do and realized that for the first time in many months, I actually felt okay. This feeling might not stick around until Monday, but I’m gonna take okay and run with it for this sunny weekend. Ten treatments down, ten more to go.

Susan gets radiated

Screen Shot 2017-05-22 at 8.06.23 AM

From the Happster’s Instagram feed

At 8:15 am, I walked into the sad building that is the Cancer Agency. So dated and scuffed, the elevator always packed, the piano in the lobby sitting empty. I go upstairs and dutifully wait in line to register. Last time I didn’t stand on the left, as the tattered sign instructed me to and I was scolded. This time I knew better. ‘Follow the green line to Treatment Area 7’ I’m told. So that’s what I do.

Treatment Area 7 is at the very end of the building. I walk past the other treatment areas and peek into the waiting areas. They are filled with people in various stages of pain.

I’m feeling especially sad for myself because I’m alone.

I get to Treatment Area 7 and sit down. I notice other women there already changed into gowns. It is only women. I don’t know if Treatment Area 7 is just for breast cancer or what. Nobody tells me anything.

I’m not sure if the staff know I’m there. I don’t have a gown. I try to ask a woman across from me – ‘excuse me’ I say but she is immersed in her phone and doesn’t answer. She wears a scarf to cover her bare head and I feel guilty that I don’t need chemo. I don’t bother her again.

I’m now thinking there’s no way they know I’m here because I don’t have a gown. So I get up and present myself to Treatment Area 7’s desk. A young man looks up, annoyed. Just go sit down he says. Okay, I say, compliant and small. The TV is blaring a shrill morning news show in the holding area. There’s no peace here. I sit and close my eyes.

The same young man calls my name, ‘Susan’ he says. Call me Sue! I say cheerfully. Nobody calls me Susan anymore.

He’s still annoyed with me. I must be like 25 years older than him. I am an old woman to him – worse, an old woman with cancer. He has the information he needs to share with me on a wipeable plastic piece of paper. I know after he’s done with me, he will just wipe all my information off and replace it with someone else’s.

First he wants to set me straight for coming up to the desk. ‘Don’t come up to the desk,’ he says. ‘That interrupts us and we are busy working.’ I nod like I’m supposed to. ‘Next time put this pink card in that box so we know you are there.’ I protest meekly: ‘I didn’t know. It is my first time.’ He stares at me blankly, like it has never been someone’s first time before. ‘The receptionist just told me to come here,’ I say finally, quietly.

This seems like a dumb thread of conversation, so I give up, defeated. I hope he’s not my radiation therapist because I don’t want him to see my scarred and beleaguered boob.

He hands me the pink card with my appointment times for next week on it. I cannot get over how archaic and paper based this whole thing is. It is like 1961. What if I lose this coveted card? I’m sure that means I’m in trouble. I can’t help but peek at the times.

Three of out five of them are either early in the morning or late in the day. When they called me last week and asked my preference for time, I said 10 to 1 pm. There are only two mid-day times. Immediately I start panicking, thinking about how I’m going to get childcare to get Aaron back and forth to school. Crap.

Um, I say, hesitant to interrupt his reading of the information from the plastic sheet. ‘I can’t come at these times,’ I say. I bring on yet more annoyance. ‘I can talk to the clerk but I can’t guarantee it,’ he says.

I reluctantly pull the disability card. ‘My son has a disability. Not just anybody can pick him up from school.’ This is a bit exaggerated but mostly true. I don’t know if this helps or just makes me look more pathetic. Patient has cancer AND a kid with a disability. Sad. ‘We’ll see,’ he shrugs.

I follow him around as he shows me where to get changed. There’s some complicated formula for the gown thing – I’m to wear the same one every time so they don’t have to wash it as much. I leave it in a numbered bag and hang it back up afterwards. I have to remember my number.

Okay, I keep saying, nodding. At the end, he says, reading off an invisible script, ‘if you have any questions, just come and ask us.’ I am puzzled by this comment. I thought I wasn’t supposed to come up and speak to them. Maybe it depends what kind of question I have.

I get changed and look at myself in the mirror. I look terrible. My hair is frizzy. My hair colour is all fading and I look unhinged. My mascara is smudged under my eyes. Why did I bother wearing make up? I haven’t slept much. In fact, I haven’t slept much since I found that ominous lump last November, which was six long months ago.

I sit back down. They call my name again, ‘Susan’. This time I don’t bother to correct them. Susan it is. Maybe it can be Susan who has cancer. Sue does not have cancer. I’ll go back to Sue later.

The radiation therapists are both women, but they are considerably less warm than the staff who did my CT scan last week. No chit chat, nothing. Climb up here, they say. I was going to joke ‘this is just like the spa!’ but I opt to say nothing. They do not seem like the joking types. They do introduce themselves, but everything they do feels like they are ticking off a box on the list.

I have to hold my breath when I am radiated. I cannot believe how stupid this sounds and how long it took the researchers to figure out if you have cancer on the left side, holding your breath during radiation helps prevent heart disease. At least I hope it does anyhow.

‘At your CT scan, you let some air out while holding your breath.’ the radiation therapist says. Immediately I feel shame. ‘They told me I did a good job!’ I say, lightly. ‘You let some air out,’ she repeated. Then she produces what looks like a clip to hang clothes. ‘If you do it again, you have to wear this,’ she says. I don’t want to wear a clip on my nose. I have a recurring nightmare of suffocating underwater because I can’t breathe. ‘I’ll do better,’ I promise.

The lights are blaring above. I wonder why they can’t turn them down. I read once there is sometimes music. There is no music here, just the whirring of the machine. I close my eyes. They are yanking the sheet under me to put me in the right position. I pretend I’m sitting on the beach in Kaua’i. I imagine watching the waves flow in and out. I keep breathing. I think, someone should teach patients relaxation techniques before they start treatment. I have to work more on relaxing. Right now, I’m the least relaxed person on Earth.

They exit the room and I’m alone with the machine. I already hate the machine. This is the coldest and least human kind of health care. I crack open a tiny bit and start crying. My hands are above my head, in some sort of weird S&M position and I can’t wipe away my tears. I can’t cry and hold my breath at the same time, so I’m a bit panicked. I have to calm the fuck down.

They talk to me through an intercom. Apparently there’s a video camera on me so they probably saw me crying but they don’t care. I wonder if other women cry. The faceless voice instructs me over the speakers. I have to take deep breaths in and hold them for a long time. I am obedient, scared of getting the nose clip and try to comply. My poor left breast is exposed, both to the air and to the burning radiation rays. Slash, poison, burn. That’s cancer treatment in a nutshell.

I feel nothing now, but later my skin will be burned. It is cumulative so I’ll be scorched after a few more sessions.

It is done. I don’t know how long it took. Maybe 10 minutes? I get off the table and stand awkwardly in the room. ‘You can go,’ they say, pointing to the exit. Thank you, I say. I thank everybody for doing their job. I know this game. If I’m not overly grateful, I’ll be labeled as difficult, which won’t help if I need a favour one day.

I need to ask about my appointment times, but there’s that guy sitting at the desk again. I march back up there, taking my chances. I need my pink card back.

He’s busy using liquid paper of some sort to change the times on my card. Now only one is not mid-day instead of three. Thank you so much, I say, again. I see the door across the hall says, ‘radiation booking clerk’ so I know this hasn’t been much effort for him.

I get changed and get the hell out of there, following the green line all the way back to the elevator. I can’t figure out where the stairs are, so I stand silently in the full elevator for only one stop, looking at the floor.

I sit alone in the cafeteria with a tea, waiting for my Mike to arrive.  He is rushing to get here after dropping Aaron off at school. One burn down, 19 more to go.

(Note:  I wrote this ten days ago after my first day of radiation.  I’ve tried to shake this experience off and let it go.  Since then, I’ve had five more treatments.  The experience has improved because:  1.  I know what to expect and 2. Sometimes I am assigned a friendly radiation therapist.  I am sticking to my contention that one little smile in health care always helps).  

learning to breathe again

Screen Shot 2017-05-11 at 8.05.22 AM

The Butterflies and Pebbles Instagram feed is the best.

Yesterday when I was at a local bakery, happily meeting a new friend and drinking tea, my phone rang. It was The BC Cancer people. I felt like yelling in the phone: STOP CALLING ME YOU CREEPS but then I remembered that I have cancer.

Over three months post diagnosis, I finally start radiation treatment on Friday at 8:15 am. They give you two days’ notice and it is at the worst possible time, as I have a kid to get to school for 8:50 am, but there was no negotiating with the person on the phone.  My whole life lately has been entirely at the mercy of booking clerks.

They (whoever ‘they’ are – I’m not even sure) dole out information into little tiny packages, only telling you the details of the very next step, which pushes you into even a more heightened state of anxiety because you don’t know what’s coming around the corner.  It turns people into wounded animals.

This makes it impossible to plan or even think about the future. Besides there is a version of the near future where I might be dead, so maybe it is best not to think about that anyhow. I suddenly understand the notion of living in the moment that everybody wiser than me keeps going on about.

At the therapist last week, I was jumping around topics like I was playing whack-a-mole and she finally said to me – after I spent 50 minutes splaying out my thoughts like machine gun bullets – why don’t you put both your feet on the ground and close your eyes? I did that and immediately I calmed down. We mutually decided that my one take-away task was to work on relaxation.

On Monday I nervously drove myself to a relaxation class at the cancer centre. Now being nervous going to a relaxation class is kind of stupid. But I there I was.

There were about seven people in the room, all women, who I presumed to be in treatment or post-treatment. It opened with a roundtable segment – the anticipation of which increased my wide-eyed nervousness. To my great relief, nobody introduced themselves by their diagnosis – instead we had to share an image that was calming to us. I didn’t have an image, but I did have an auditory memory: the sound of the croaking frogs outside our bedroom window that puts me to sleep when I go to bed, and then lulls me back to sleep when I wake up my typical five or six times during the night. (Thanks for the insomnia, Tamoxifen). The croaking frogs turn into singing birds when the sky lightens and even thinking about those sounds gives me a small zing of calm pleasure.

I was the only ‘new’ person in the room and many of the ladies seemed to know each other. I also felt young, which doesn’t happen very often anymore. I’d describe many of the women there as sad. I am sad too.

The facilitator was a social worker and had a lovely way about her. I didn’t have my little notebook out, so I can’t remember much she said, except this: we can trick our bodies into feeling calm by breathing. If we take nice deep breaths, our bodies feel we are calm, even if we are not. This makes sense to me. Don’t forget to breathe, silly.

Later, we laid down on mats and were covered by blankets by volunteers and the facilitator walked about, giving a guided meditation made up of all the images we had shared with her. Then, oh my god, the volunteers came around and touched our heads and feet in a most therapeutic way and man did that feel good. This might sound weird but it really was the best thing. I realize how little we touch each other in this world, especially in health care environments. Most touch in the hospital involves inflicting  pain and this gentle touch is the perfect antidote to that. I think more healing touch could help make hospitals more human again.  (I have so many ideas to make this whole cancer experience better for patients, but nobody has bothered to ask me my opinion).

Afterwards, everybody packed up the mattresses and pillows like after a yoga class and we met back in the circle. At this point, nobody had spoken to each other directly. One woman leaned over and said to me: I like your nail polish. I smiled at her generous olive branch, tears threatening to spill behind my eyes.

I was happily and calmly heading back home when three of the older ladies said to me, ‘we meet up for coffee afterwards. Do you want to join us?’ Sure, I’ll just go to the washroom first, I said, overly enthusiastically. I went into the washroom, locked myself in the stall, and cried like I was a little girl again.

These women all knew what it felt like to be the new person. They hadn’t forgotten what it felt like to feel scared all the time. I felt on-my-knees grateful for this kindness.

Later, in the cafeteria, I found out little pieces of their own stories and I shared a bit of mine. When I confessed I only had stage one breast cancer, one woman admonished me: you don’t ever only have cancer, she said. You have cancer and that’s always a serious thing. Then they said, ‘watch out or we will mother you!’ I blinked back tears and nodded, biting my lip, starting to break open again. Being cared for is the one exact thing that I so desperately need.

Tomorrow morning, I will be at the cancer centre, wearing a thin hospital gown. When I’m laying at the mercy of the radiation machine, as they line up the punishing rays with the tattoos on my poor beleaguered left breast, I will close my eyes, remember to breathe, surrender and draw upon the spirits of the kind women who have gone before me.

Cue the frogs, my friends.  Namaste.