number 51

patient

Me, immediately before I lost my sense of humour.

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.

14 thoughts on “number 51

  1. msteele34 says:

    Yes, you are Sue. You are not # 51. And Mike should be able to hold your hand any damn time you please. So sorry for this dehumanizing treatment, but glad you are through the surgery. I have been thinking about you non-stop, but especially today as I am spending 5 hours in a chair with an IV at Childreb’s Cancer Care Clinic at Health Science. I am surrounded by adults and kids having chemo. II feel like an imposter, using health resources but they seem to have space for everyone. The staff and volunteers here are kind and gentle with kids, parents, adults and imposters alike. The rooms is designed to maximize natural light. There is coffee, tea, apple juice, Arroroot cookies, suckers and toys. One little girl drove herself to her chair in a bright pink toddler push car. I hope the next phase of your réarment is in a clinic like this. Xo to you and Mike and Arron, Ella and Isaac.

  2. championsforwellness says:

    I am so hurt and angry and frustrated for you Sue. Saying this is small comfort I’m sure. You are such a tireless champion for the patient and caregiver voice and it is appalling that this was your experience. I am glad you wrote about it. You give voice to countless others who will have had similar experiences, and maybe, just maybe someone from that clinic will read your post and think “wow, I need to do better”. Or maybe it will be another provider from far away who is influenced to change their practice as a result of reading your words. I desperately hope for this to be the case. Wrapping you up in a very gentle hug from down the road. ❤

  3. Linda Sharpe says:

    Hi Sue, I don’t know you, but I have to share the short version of my journey with ER+ PR+ Her2+ breast cancer. My story started out exactly like yours in terms of care. However, they wanted to do 6 months of chemo first. I pointed out to my surgeon that I have many, many allergies to almost all drugs. She said, “Oh well, we’ll see.” We did a little research and are presently in Phoenix AZ at a medical facility called Euro-Med where they do chemo treatments in a very different way- about 10% the amount, but still all six chemo drugs, but with insulin. (called IPT) I have just completed my 11th treatment and have 5 more to go. Of the five tumors, (it had spread to my lymph nodes as well as another tumor on the breast) there is only the one larger one left and it is extremely small. I have to really search to feel it! The people at this clinic treat me like a valued client and friend. They constantly are checking to make sure ” the IV isn’t burning as they can slow it down if so,” etc, etc.
    I am so sorry that you were treated so poorly. Maybe telling our stories will eventually be the ticket to better “service” in Alberta.
    The very sad part to my story is that my husband and I have to finance the entire treatments by ourselves even though it will cost a LOT less than it would have cost the Alberta government for me to have to treatments there. (Maybe not- they would have killed me first -LOL) Sorry not really a laughing matter, but kind of true.
    I pray that your recovery goes very well for you and that you never have any kind of cancer again. If you are interested in hearing more about IPT please don’t hesitate to contact me at my email address.
    Blessings to you. Linda

  4. searchingforsolidfooting says:

    I just…I just can’t even fathom. I am so hurt and saddened by this. Words Matter. Actions Matter. Compassion Matters. Kindness Matters.
    Your storytelling is so important, but I wish you didn’t have to tell it. I wish people would simply ‘do better’.
    You are an incredibly resilient woman. Intelligent, brave, strong, and all of your characteristics will help get you through this. That and the light at the end of the tunnel in all this.
    Thank you for continuing to share yourself so that others can be informed and learn.
    LOVE.

  5. seastarbatita says:

    This post made me so sad and so angry. Kindness needs to matter to everyone in healthcare. The moment it stops, they need to pack up their desks/lockers and move on. You are Sue, woman, wife, mother, most importantly, human being.

  6. srasmuss says:

    i am sorry. this is not good enough. until we are appalled enough, change will not happen. care should be not-negotiable. it is tragic that these stories exist – i will continue to share them with clinicians and clinicians-in-the-making in the hope that we will together learn and shift the set-point of normal. shayne

  7. Haide says:

    Sue, I have tears in my eyes after reading this. You are not just a number. I’m thankful for people like your husband, daughter, and family doctor. And I am so sorry to read about the lack of compassion and understanding on your hospital day. Thank you for using your gift of words to share this. I hope your words reach some of the people who have the ability to make changes.

  8. Edna Tiegen says:

    Reading your story makes me so angry. This should not be happening to a patient. And it has got to stop…What is it going to take to change this…we are not in a 3rd world country….If you don’t like nursing or being a doctor don’t work in this field. There has to be an outside investigation into hospitals and some staff….It is time to listen to helpful criticism from the public and work towards correcting these issues…

  9. Tanja says:

    I am so sorry to hear that this has been your experience – and I can only imagine how frustrating (demoralizing?) it must be for you, not just as the patient, but as someone who has worked so hard to build a culture that prevents that very thing. I have shared your blog with my daughter, a Radiation Therapy student at UofA … please know that your words are reaching into a new generation of health care professionals (and from what I have seen and heard, this program does work to prioritize person and patient-centered care). There is a vast difference between treatment and care … I have to believe that gap can be bridged, and I sincerely hope this experience was the exception not the rule in your own journey. hugs.

  10. sue robins says:

    I really love all these comments – thank you. I do write to help me process – putting a story together helps me make sense of random experiences and helps me heal.

    Thank you to those who are sharing this with students for teaching purposes…and for my fellow mama bears and friends for joining me in outrage that this kind of experience is still far too commonplace in health care settings. Next up? I’ll ponder what we can actually do and offer up some suggested solutions – alas I’ve been working in this field for ten years and I have no silver bullet.

    i do know that talking about it openly is a good first step. This is not okay and I KNOW those working in the health care system (administrators, admin support staff and clinicians) CAN do better. xo.

  11. Tara Hogue Harris says:

    Another person with tears in my eyes here. In the spirit of looking for the good, I’m so grateful you have Mike there, Ella to help you, lots of people who love you. I’m most grateful for your voice — it’s a powerful weapon. So happy you’re using it.

  12. Jen says:

    Sue! I’m so glad you are getting care for the cancer….but my heart aches…and the tears rolled. .. with your tale about the care for you! It makes me so so angry at the system that could be so so much better. And if anyone knows that patients are people and can and should be cared for…it is you! Stay strong and keep telling your story….I believe in your story and you! Love Jen

  13. Dan Green says:

    Look at the entrance requirements for admittance to university health disciplines and you will see that course emphasis is primarily scientific and mathematical rather than humanistic or interpersonal.
    This skews successful applicants to those who are smarter in solving mathematical and scientific problems but who often are less empathetic when it comes to interpersonal relationships.

    There is no question that we require high scientific standards in our medical training but we decrease the effectiveness of treatment when the training requirements eliminate many individuals who may not be as fluent in solving mathematical problems but who may be better suited to addressing patient feelings and needs. My mother, who was an instructor in “Nursing Arts” referred to this innate skill as being blessed with, good bedside manner.

    A balanced curriculum which would not exclude those less mathematically inclined could help provide more individuals capable of providing more humanistic outcomes.

    Dr. Dan Green
    University of Manitoba, Dentistry
    Class of 1969

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