Susan gets radiated

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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).  

12 thoughts on “Susan gets radiated

  1. Catherine Doyle says:

    I am sorry that everyone seems to have their head up their ass. Really unnecessary.

  2. ceedee52 says:

    not sure if this was already posted….but…..
    I am really sorry that everyone was such a dick to you. Really not necessary. Bad management.

  3. msteele34 says:

    Dear Sue not Susan,

    Thanks for this post. Sorry this isn’t a hand-written letter. Every time I read about your experience with numb, robotic, unkind, apathetic or uncaring staff I spiral into a seething rage. We both know it doesn’t have to be that way. I know it doesn’t have to be that way. We both know what a difference it makes when it isn’t that way. WTF is wrong with these people? My guess is that it is not an individual problem but a systemic one. They are part of a system that rewards them for turning their humanness off and punishes them for keeping it on. I think I told you that I have been getting IV iron treatments at CancerCare MB at the Health Science. Everything about the experience is so the opposite of what you describe. The building itself is designed for comfort with solarium style windows overlooking a courtyard for each of the treatment areas. The staff are, well, fantastic—they are patient, available, human and authentic. There are volunteers who come by with carts containing coffee, tea, juice, cookies and so on. The mostly Hutterite volunteers bring the ultimate comfort food, cream of mushroom soup and chicken noodle soup with the little packets of soda crackers at 11:30, the designated lunch time for the old and the sick. There is also a volunteer with an art cart who comes by offering colouring books, pens and pencils, puzzles etc. I am not telling you all this to brag about how great things are here, but just to concur that your folks could be doing so so much better at the human/humane side of care.

    But wow, 5 radiation treatments in! They really get down to business. I don’t know what it’s like to go through that. Does it get harder as you go along? I hope not and I hope you are holding up and getting through. I guess there are not a lot of other options.

    I have been working crazy hours, but it is starting to slow down finally. Did I tell you that I will be doing my practicum next year at St. Amant working with families of and individuals who live with disabilities? I really wanted this practicum for a variety of reasons, so I am grateful for it, though it will mean a year without my easy access to my peer community at U of W and a year of driving rather than biking or bussing, but worth it never the less. I will be needing your insight and wisdom in lots of instances I’m sure.

    I miss you my friend. I wish I was in Vancouver so that I could go with you to these appointments or drop Aaron off at school or whatever you need.

    Sending you love,

    Melissa

    >

  4. Katharina Staub says:

    Dearest Sue
    The inhumanity of your experience makes me cry.
    We are not made of stone.
    When you are vulnerable is when you need humanity, a smile, a warm hand, an understanding gaze.
    It’s so hard to see humanity in certain environments.
    I wish I could hold your hand and be there.
    Love katharina

  5. Donna Thomson (@Thomsod) says:

    I wish I wish I could be there to smile and teach those clinic people a thing or two about human kindness. I’m sorry it’s so difficult and I’m angry that it could so easily be a little easier.

  6. sally@cheal.ca says:

    Dear Sue,
    Two years ago I had a back injury. I was in excruciating pain and I had to have an MRI and a CT scan while one of my discs was ballooned out and pressing against a branch of my spinal cord. I cried through my MRI and my CT because I had to stay still in a position that was even more incredibly painful. Throughout it all, I felt like the technicians couldn’t understand why I was making their job so difficult? Why couldn’t I just keep still and why did I persist in writhing in pain and making their job difficult? I must have blanked it all out, because it wasn’t until I read your heartbreaking post, that I re-lived my experience. I am so sorry that you were treated the way that you were. One thing that I find incredible in my experiences with health care is that you tend to be treated better by the volunteers than by the paid employees. I’m not sure why that is, but they see you as a person, while the employees just see you as a diagnosis. This has to change.

  7. Katie says:

    I’m sorry you’ve had tough treatments where the radiologists seams uncaring.

    But just so you know, in that building there are some caring staff. When I was there for radiation treatment, I was greeted kindly with “How are you?” and a smile… sometimes. The radiation staff in the room, sometimes it is more business-like, but sometimes they smile and talk about the latest movies. I’m sorry you haven’t had a chance to meet them (yet!), maybe next time, you’ll get a generous spirit, or two.

    There was more than one time when a machine broke down and they needed to call someone in to fix it. That time they were very backlogged and a group of us had to wait over an hour for our turn. The radiologists did apologize multiple times but I told them “it’s ok”. It’s not anything they can control. Also, “oh my goodness” there are SO many ppl getting radiation, and that makes me sad, because so many people are sick. So the machine breaking down is a thing that can happen. Just so you know.

    Anyways, I’ll wish that you get a chance to have some kinder ones. Or perhaps the ones you’ve met, if you meet them again, will have a kinder day when you have to go back.

    It is hard when the skin burns as you continue. But it also gets a little easier because you’ll be closer to be being finished. The skin does heal. It stays a dark color for awhile but it will fade. The radiated skin will be sensitive to sun light forever after this, but that’s ok.

    I’m sorry you got this disease. It is difficult and lots of emotions to process. Thank you for sharing your story. It helps me to process mine, too. Best wishes.

  8. Jen says:

    WTF? Sue I am so angry the system sucks so bad…and the people in the system aren’t engaged and compassionate in a system that really needs to be because you and other people who need the system..need compassion and love and support. I am so happy and proud to call u my friend and that somehow you have the strength to continue telling your story…please keep telling it and I only hope that it can get better. Love hugs and strength to you and Mike and your family.

  9. bmitzi says:

    Dear Sue – so very sorry you had such an awful experience. My first cancer experience was 1990 and there was much wrong – poems burst out at 3 am night after night. I was lucky to survive, but had to stop other patients suffering unnecessarily as I had. I began writing in medical journals, Health Service Journal, then British Medical Journal. My first conference was ‘Patient Empowerment’ – I was so lucky the patient voice was starting to be heard here in UK at last. I helped set up a cancer support group, then ran it for 12 years. Local media used to ask me to comment and I was asked to join the Community Health Council, which looked after patients’ interests = 8 years until they were disbanded (government!). In 2000 I was asked to write a chapter in Modernising Cancer Services ‘What Cancer Patients Need’ – which gave me the confidence to write my own book – my cancer story, which included those poems, and at the end of each event I included discussion sections looking at what needed to change, with research references to better/evidence based practice. ‘Nothing Personal, disturbing undercurrents in cancer care’ Radcliffe Publishind (originally Radciffe Medical Press) has spread worldwide and I’m so thankful it has helped change so many things that needed to change. I’ve been so fortunate to be a patient representative and change guidelines at national level. This has meant I’ve come across some wonderful health professionals who have restored my faith in the profession. I’m just writing this because your writing deserves to be shared and I hope you are recovering well. If you want to write more, it can change your life! What’s more, it can change other health professionals’ attitudes and improve patients’ lives. Last of all – if you take a look at Hearts in Healthcare and read what Robin Youngson (NZ anaesthetist) suffered when his daughter was in hospital – and how he has set up H in H online, spreading the word about putting compassion into healthcare – it gives hope for us all. Here is a doctor who knows what needs to change and is doing his best to make it happen.
    ‘My hand to you in love’ is what one doctor from the Kings Fund wrote to me after my first article in a medical journal – and I’d like to offer you mine – with many congratulations for your brilliant blog story. Warmest wishes, Mitzi (Blennerhassett)

  10. sue robins says:

    Mitzi – thank you so much for this wonderful comment. I’ve spent the past hour sifting through your great volume of work online. What an incredible testament to how writing can change the world. I’m now 5 months post-treatment, still healing in so many ways…but writing my way through it has been helping. THANK YOU for your support of my writing – I will continue on. And gratefully accept your hand to me in love. ps: I do have Dr. Youngson’s book in my bookcase!

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