In my large mom purse, I carry around my high expectations for health care experiences. Being the mama bear of a kid of a disability has taught me a lot over the past 13 years. Now I’ve become a patient myself. Clinically, I know next to nothing about breast cancer, but I do know a boatload about compassion, respect, kindness and dignity.
I know the little things mean a lot. I know it takes only a minute to ask ‘what matters to you?’ I know that patients should have information shared with them in a way that they understand. I know the value of a kind touch and a gentle gesture. I know that hospital processes strip away dignity from already vulnerable patients. I know that what is a big deal for patients is often not a big deal to staff. I know that health care inflicts trauma on patients and that staff and physicians should be working hard to minimize that trauma with every single encounter. Most of all, I know that health care professions are intended to be healing professions, and I’m always disappointed when I bear witness to the contrary.
I had the notion that cancer patients were treated well. I think my tumour has been treated very well – and for that I am extremely grateful. I am also thankful to live in Canada, where inpatient hospital costs are publicly funded, and except for the ‘me not-working part’, our family won’t slowly bleed into bankruptcy like my American friends. The one thing I’m not sure about is if I’ve been treated as well as my tumour.
Last Tuesday, I had a partial mastectomy, another biopsy and a lymph node removed. So many strange encounters happened that day and I’m not planning on shutting up about best practice in patient and family centred care any time soon. I still believe that the only way change will happen is if we keep speaking up to tell our stories.
My husband and I arrived at the hospital at my appointed time, 6:30 am. The receptionist looked up at me and said sharply, ‘we don’t open until 6:45 – take a number and sit down.’
Like I was ordering deli meat, I took a number and dutifully sat down in the crowded, dirty waiting room. Posters were tacked up slightly askew on the walls and the fear was palpable in that little windowless room. We were mostly women waiting for breast cancer surgery – some alone, some like me, lucky enough to have a partner by their side.
‘Number 51’ they called. I stood up and followed the technician into the treatment room. I know they knew my name, and being referred to as a number set an uncomfortable tone for the rest of the long day.
Later, in a curtained pod pre-surgery, the nurse was assembling the equipment to start my IV. ‘Can my husband come in now? I need him to hold my hand while the IV is started,’ I asked, a confession of my needle fear. ‘No,’ she said, not making eye contact with me. ‘He can come in after.’
I shrunk back into my stretcher, afraid to make a fuss, hot tears forming in my eyes. The IV poke hurt, as did the tourniquet, and I had nobody to hold my hand.
Later, in radiology, wires were inserted in two places in my breast while I’m squished in a mammogram machine. This practice, done while I’m wide awake, is nothing short of barbaric. I hadn’t slept or eaten and was already whacked out with fear. My ears start ringing, my vision blurred, I couldn’t breathe and I knew I was going to pass out. The radiologist and tech stopped and gave me a break before I hit the floor.
‘I’m sorry for being such a baby,’ I said, very Canadian in my apology. Later, the Internet tells me that up to 50% of women feel faint during this procedure. Why doesn’t anybody tell me that so I can be prepared? Why isn’t there standard sedation? I feel grateful that my nurse friends coached me and I knew to ask for an order for sedation at pre-admission clinic. But the little Ativan doesn’t help much with my horror at more needles jammed into my breast and the sight of black wires coming out of my body.
I had counselled my husband on the drive to the hospital to ask the surgeon to talk to him afterwards so he can find out how my surgery went. ‘Okay,’ he says, strong, assertive and protective.
The conversation with the surgeon goes like this:
Mike: ‘Can you come and tell me how it goes after Sue’s surgery?’
Surgeon: LAUGHS and says, ‘Oh no, I’m too busy to do that. There’s a follow up appointment in a couple of weeks.’
(It has been six days and I’m still not sure how my surgery went. I don’t know how to get this sticky glue from the tape off me. I am bruised and scarred. I have blue dye seemingly permanently tattooed in my skin. My armpit is numb. My steri-strips are coming off. My hand has swollen up. I’m still really sore).*
Back from surgery, the nurse is eager to get me up walking so they can discharge me. I’m in a hospital gown. ‘Can she have a robe?’ my daughter asks, helping me out of bed. ‘No, just tie up the gown,’ the nurse responds. No? I’m cold and shivering and I have no clothes under the thin fabric gown. My daughter shakes her head at the nurse, goes to the supply cart, digs around for a robe and gently places it around my shoulders. My girl walks with me, pushing my IV pole while I shuffle to the washroom.
Another missed opportunity for a simple kindness. What is particularly awful to me is that I know to ask for what I need. My family is not afraid to speak up. But we were all dismissed, disregarded and not listened to in the smallest but most significant ways. I saw many people in the waiting room – what of the woman who was alone? Or the older lady who didn’t speak English? Or the woman there for a double mastectomy, her sad husband by her side?
This is random but relevant: Cleveland Clinic has released another great video about the patient experience. I’d add to their concept of ‘words matter’ that ‘actions matter’ too.
I am very fortunate that my dear daughter (a second year nursing student) stayed with me for the past ten days to be my caregiver. She distracted me, kept me company, fed me, looked after her little brother, drove me around and removed my dressings. Before she left, she gave me a list of Ella Rules to consider. Rule number ten said: Ignore stupid things – let yourself be upset but then let yourself move past it. This is sage advice from a 20 year old who has always been wise beyond her years.
I am not ungrateful for treatment, but I don’t feel grateful for my care. I do promise to go into every new health encounter with an open mind. As Ella advises, I will endeavor to either politely respond to or shake off negative experiences. For my own mental health, I can’t stew in this darkness. I need to stay in the moment and look for the light.
I’m not Number 51. My name is Sue. I’m a writer, speaker, mom of three, wife to Mike, advocate, friend to many. I like sushi, baths, books and yoga and I happen to have Invasive Ductal Carcinoma. Please treat me as well as you are treating my tumour – for I’m a real, live and still-breathing person too.
*note: I have an appointment with my family doctor today and I know she will take care of me. This experience has compounded my philosophy about the importance of primary care, even when you are in cancer care and surrounded by a bunch of specialists. Family physicians and family practice matters.
**edited to add: My family doctor fixed my ratty dressing, printed off the surgeon’s report, explained the contents of the report to me and then gave me a hug. THIS is what I choose to remember.