I wasn’t half wrong when I said that cancer follows me everywhere.
Fresh out of the armchairs-and-tissues room of my new breast care nurse, I took my youngest daughter shopping for the uniform she will need when she starts secondary school in September. Sitting on the top deck of the bus, all of a sudden, I saw my breast care nurse smiling at me, larger than life.
I had to interrupt my daughter’s highly important chat. “Hang on a minute!” I said, craning my neck. “I think that was my nurse on that advert.”
My iPhone picture, taken on the way back, wasn’t clear enough, so I googled “Macmillan Cancer Support Adverts”. And yes, it’s definitely her. It even has her name on it. I can’t escape. Fortunately, in the case of this lovely nurse, I don’t feel the need to escape.
It’s interesting how it takes just a minute to establish whether a nurse is of the helpful and supporting kind.
I have given hospital staff the benefit of the doubt, giving them a second and third chance to help and support me, but I’ve rarely been wrong in my first impressions. Which has made me think a lot about what it is that nurses (and doctors, and social workers, and physiotherapists, and radiographers, and receptionists) do to make their patients trust them and feel supported by them.
I am writing this blog post for the health care professionals among you. (Everyone else, feel free to go and have a cup of tea instead.)
I have whittled it down to three key points, all of which can (and will) be shown in the first few minutes.
- This nurse (doctor/social worker/physiotherapist/receptionist/etc) recognises me as a unique individual, and treats me as such. Not just a number (or a breast), but someone who matters.
- This nurse has time for me. (Even if they have little time. During the few minutes they spend with me, their focus is on me alone.)
- I can show my fragile side and this nurse not only copes with it, but she conveys that it is OK and she doesn’t think less of me.
There are many ways in which these three things (or the lack of them) can be communicated. I could write a book about my observations so far – not least observations of myself, the unexpected impact a nurse’s throwaway remark has had on me, the way in which a non-verbal response to my slightest wobble has sealed the deal on future interactions.
Be warned: it only takes patients a few minutes to make up their minds about you.
How much of themselves they show you, how much they will admit to their true feelings/symptoms/questions, will depend on it.
I have felt free to ask the most minor of questions if I felt safe with the doctor or nurse. I have also carried questions around with me, feeling their heavy weight but not daring to ask them in case they were silly, and instead spending hours googling for the answer.
(This has surprised me. If I, an associate professor in nursing, have a question, then surely I can be confident that it is not a silly question? But I have found that as a patient, I am so vulnerable that my professional confidence crumbles.)
It makes me shudder to think of myself as a hospice nurse two decades ago, the many times I must have got it wrong for my patients. I wish I could go back and apologise.
There are unique features to being a patient-with-baggage, the baggage of inside knowledge.
I even work at this hospital. It always makes staff sit up when they hear my answer to “What do you do? Where do you work?”
I will keep those insights for another day, another blog post. Suffice it to say that I need to be spoken to as an intelligent fellow professional whilst being treated as an ignorant patient who doesn’t know anything about breast cancer treatment, and who will try but often fail to keep up the professional facade. That’s not an easy task for my doctors and nurses, and all hail to those who have managed it.
But some things are really quite simple.
On my second meeting with the surgeon, a junior staff member who I’d never seen before called me out of the waiting area with Irene pronounced correctly. That has never happened to me before, anywhere. I usually have to prick up my ears to pick out a mumbled EYE-reen, English-style, rather than the correct Dutch pronunciation ee-RAY-na.
I felt instantly known and important: I felt like me.
When I complimented her, she said, “The surgeon told me I must say it like this.” I was amazed and almost moved to tears by such thoughtfulness. If I think I am going to have more than just passing dealings with a healthcare professional, I do tell them how to pronounce my name, but most don’t remember and need weeks, even months, of training.
I knew in that instant that I mattered to this surgeon, and she never disappointed. She remembered everything about me.
Contrast this with the ward nurses who came to my bedside without looking at my name at all, and without introducing themselves.
Some were brilliant (“Hello, I’m X, and my job is Y. I am here to do Z.”). I might offer them a snippet of important information about me. Others simply turned up and started fiddling with drips/bedsheets/forms, with hardly a glance at the patient in the bed.
Or how about the surgical breast care nurse, who I’d asked to meet because I wanted to talk through some of the details of my situation. I was reeling from the recent news that I needed a mastectomy. It was seven weeks since first met her, when I received my cancer diagnosis.
When we sat down, she not only needed me to remind her of the details of my diagnosis, but she also asked me: “Who is your surgeon again? Is it Mr X?”
It wasn’t. I was flabbergasted, because this nurse had sat in on most of my meetings with the surgeon, including both times when I was given serious bad news. Times that were etched in my memory, probably forever.
I knew then that I could not get my questions answered, or my feelings supported. That meeting ranks as one of the lowest points of my cancer journey. It was worse than being told I had cancer (because I’d suspected that – but I hadn’t been prepared for feeling so utterly unimportant). It still upsets me now, thinking about it.
Of the many examples fighting for a space on my blog, I will tell you two contrasting stories. Both concern my two breast care nurses’ responses to a few little tears that I could not hold back.
How not to be a nurse
This happened on diagnosis day. As mentioned, I was prepared for this bad news. In the surgeon’s office, I asked all the right questions. I listened to (and understood) all the answers. I was in practical mode: Right, now we know the score, let’s get on with this.
But then the breast care nurse, who had sat in on the meeting with the surgeon (see above), took me and my husband to another room next door. To support us in whatever way we needed, I’d imagined. Taking those few steps, I couldn’t hold back my tears.
All it needed, really, was a nurse to turn to me, look at me (and at my husband), and acknowledge those tears. Perhaps just say that this must be a huge shock to the system, and of course there are tears. Sit down and listen to me, or at least give me a few minutes to process the overwhelming new state of affairs. But above all, I needed someone to look at me with compassion.
But there was no acknowledgement of my tears. Instead, the nurse sat down at her desk, back turned to me, and handed me a fat folder that said Primary breast cancer resource pack. I took the hint and did not cry again. I swallowed back my tears and dragged my competent side out of my guts.
“My cancer bible!” the nurse said brightly, enthusiastically circling the relevant details. “Everything you need to know about your cancer is in here. And here is a leaflet for a breast cancer support centre. It’s not far from here! You can get complementary therapies there, talk to other cancer patients…”
I spluttered that I didn’t think I wanted to go to a cancer support centre, but was told that these centres are really very good. It sent me into must-protect-myself-from-attack mode. I’d only been a cancer patient for ten minutes, I didn't yet feel like a cancer patient, and the last thing I wanted was a leaflet on how to be a cancer patient.
What I wanted was someone asking me: How are you? and help me listen to my own answer.
Perhaps, if I’d been given that space (even for a few minutes), I might have been open to receiving information. But without it, the information felt like an assault.
I heeded the unspoken message: this is not a nurse I can be myself with. This is not a place where I can cry. And I have acted accordingly. I have mostly been cheerful, in control, efficient in my dealings with this nurse. I have kept things practical, never hinting at the fact that practical issues were the least of my problems (well, lack of spare Softie aside). She probably had no idea that underneath, I often felt shaky and utterly vulnerable.
The sense that I have to explain and justify my feelings or choices has been one of the hardest things to deal with in my interactions with health care professionals.
This same nurse came to find me on the ward a couple of hours after my mastectomy.
“How are things?” she asked.
“I’m finding it really tough at the moment,” I answered, trying and failing not to cry. (All I could think about, and cry about, was my mother. I had never felt so vulnerable in my entire life.)
“Really?!” she asked, sounding genuinely surprised. “But the surgeon said the operation went really well!”
Enough said. Case lost.
How to be a nurse
I can already see that my new breast care nurse is someone I can cry with. That is high praise indeed. It might even be the litmus test.
In fact I did cry in her office this week, to my own surprise because I was so determined to be in control of my emotions. But she started talking to us about the challenges of looking after children when you’re having chemo. Even teenagers. Even the kind of teenagers that we are blessed with: helpful and understanding ones.
“It’s going to be hard,” she said, “because when they want to push the boundaries, even a little bit, you will be tempted to let them. Anything for a quiet life. You (addressing my husband now) are going to have to work hard to keep the boundaries the same, because she won’t be able to do it.”
We have talked about this a lot at home, even with the children themselves. I could be rational about it. But here was the lovely breast care nurse looking at me and talking about it, acknowledging the challenges we face, noticing my sneaky leaking tears. She simply nodded and handing me a tissue. It felt hugely supportive. She seemed to understand that my tears were not necessarily for fear that my children might throw a wobbly, but for my distress at the daunting and terrible prospect of spending so many months without enough energy to remind them to load the dishwasher. Here, clearly, was someone who was prepared to sit through any distress and walk alongside me.
Most staff have been like this. I’ve been lucky.
The stories of the less-than-ideal scenarios are longer, because they stand out in my memory. But really, most staff have been excellent.
There was the lovely young physiotherapist who came to see me the day after my mastectomy, to show me the exercises I should do at home. I explained why one of the exercises was too painful.
“Look,” I said, showing her. “I’ve got a drain that loops all the way under my skin and tickles my under-arm nerves every time I move my arm this way.”
“You look at your scar really easily!” she commented, sounding amazed. “Most women find that really difficult.”
“Well,” I explained, “to be honest, the mastectomy is the least of my worries…” and I proceeded to tell her about my mother.
“That’s given me goose pimples all over!” she said. “I can’t even begin to think about that.”
She didn’t stay long, but after that, she had my full attention. She had listened to me, even though it was only for a minute, and as a result I was ready to listen to her.
Here is my request to all health care professionals: make no assumptions about your patients.
Don’t go in with pre-conceived ideas about what she needs to know and what you need to achieve. See each patient as someone with a different story to tell, a new and unique way of coping with cancer. You may know about cancer and all its paraphernalia, but you don’t know your new patient and her family. You don’t know how cancer affects them.
And you will only find out if you listen, because your patient will be working hard to hide it from you.
So thank you, thank you to all of you who have seen through me and listened to me.