Monday, 14 July 2014

16. How to be patient

This is what I’ve learned.

Patients have all the time in the world.

They don’t have diaries - at least, not diaries with things in them, like work appointments or activities or staying-in-for-the-boiler-man.

Or holidays. Definitely not holidays.

(By association, patients’ families don’t have holidays in their diaries either. If they do, they are in danger. Any moment, a doctor can come along with a great big red pen and put a stop to any holiday plans. But patients don’t mind, of course, and neither do their families. Their only concern is standing to attention in order to get better.)

Patients are free and available to turn up at the hospital any time they are summoned, whether that is tomorrow, next week or next month.

Furthermore, patients are patient.

They don’t mind sitting and sitting, and then sitting some more, whilst doctors and nurses and receptionists  bustle about, disappearing behind closed doors, appearing again. Clearly, these doctors and nurses and receptionists do have diaries, and their diaries are very full.

Patients watch. They follow the nurses’ movements, their heads moving in unison like Wimbledon spectators, waiting for the final announcement: game, set, match, Irene Tuffrey! Your turn.

“Sorry everyone, but the clinic is running an hour and a half behind schedule.” 

I’ve heard this twice now. When that happens, the people in the full waiting room shift around a bit, perhaps look a fellow patient in the eye, briefly, resigned. Then they go back to the magazines they are pretending to read. (I suspect I’m not the only one who cannot focus on reading.)

Sometimes it seems that appointment times are simply academic: a vague indication of whether you should come in the morning or in the afternoon.

If appointments are on time (and in all fairness, sometimes they are), patients are grateful. They feel as if they’ve been given half a free morning, unexpectedly.

Copyrighted image taken from Getting On With Cancer

Patients can spend hours in waiting rooms, but they never complain.

The licence to complain is reserved for busy people, like customers in a post office queue who have better things to do, or travellers at passport control who have lives to live.

This is a steep learning curve for me. Only a couple of months ago, you’d find me leafing through my diary to see when I could fit in a dentist appointment. I postponed my initial breast clinic appointment because I was too busy attending a conference.
My first question to the surgeon, the week before I was given my cancer diagnosis, was: “If it turns out to be cancer, when will you treat it? Will I be able to speak at a conference next week? Or run a workshop in Germany in a couple of weeks’ time?”

I put my diary on the doctor’s desk, showing her how full it was. You see? There was no space to fit cancer in.

But now, my diary is empty.

Once I was given my diagnosis, and the surgeon told me gently that it would be better not to go to Germany (or even speak at that London conference), I spent several days cancelling things, emailing apologies, crossing things out.

Now, all I have written down is things like chest drainage and surgeon follow-up appointment and oncology outpatient appointment.

There are other things in my diary too, things that concern my children, like end-of-term-ballet-class-when-parents-are-expected-to-come-and-watch and assembly and sports day. But they are written in pencil, ready to be rubbed out when the hospital summons me.

When I first told my children that I had cancer, my younger daughter was most upset that I would be unable to come to her school’s Easter celebrations where she had a performing role, because it clashed with my appointment for an MRI scan. “You must tell them to change the appointment!” she cried. “What I’m doing is much more important!”

Whilst I am getting used to being patient, I do find it hard to ask others to wait with me.

Nobody has complained. My husband has waited stoically alongside me, only allowing a brief resigned smile at the “it’s going to be another hour and a half” announcement. His pen has been hovering over the August holiday weeks, but he hasn’t written anything in because we don’t yet know what my treatment plan looks like.

He doesn’t complain and he never questions the need to come along, but I do, because I know that unlike my own diary, his hasn’t been emptied. It is important that he is there whenever I am going to be given new information or explanations, but if appointments are simply for medical procedures, I prefer to go without him. I feel bad enough as it is, putting my family through all this.

Mostly, I also decline friends’ offers to come along. I don’t want to be sitting there and worry about wasting their time as well as my own – however much they assure me that they don’t mind. Perhaps that is my need to stay independent and in control.

And I am genuinely quite happy to wait on my own. I spend the time observing the staff, noticing who is best at communicating with waiting patients, who looks hassled, who inspires calm and confidence. I observe the other people in the waiting room, trying to guess who their companions are and what they are there for (I’m sure other patients do the same, even though we pretend to respect each other’s privacy by not staring too much). I am trying to work out the hospital systems, trying to understand why the patient who arrived an hour after me is seen before me, and why I need to wait a total of three hours for a couple of ten-minute pre-operative appointments.

Still, I oscillate between acceptance and frustration about being patient.

Of all the different kinds of waiting, I find waiting for information the hardest.

Right now, I am annoyed that I still don’t know what my chemotherapy plan is. When does it start? How long will it last? I am guessing it will start in a few weeks’ time, but my appointment with the oncologist is not until next week.

"Come back in three weeks' time," they'd said. "Then they will discuss the treatment options with you."

I would be very nice to know these things sooner. I would feel more in control of my destiny. (It would also be nice for my family to know what the shape of their summer holidays will be.)

But like a good patient, I will wait and see.

My reflections on How To Be Patient have made me think of the people in one of my research studies. They were expert at it.

Between 2005 and 2008, I spent a lot of time with 13 people with intellectual disabilities who had cancer, trying to understand their experiences. Officially, it was called work. I called it a privilege. In many ways, these 13 people turned out to be my role models. Now that I have cancer myself, they shine brightly in my memory.

I wrote about Having To Be Patient on page 176 of my book. I had been reflecting on the extent to which the days of many people with intellectual disabilities were rather empty, even before they were ill. Much of their time was spent simply sitting around. Not for them the full diaries, the multi-tasking lifestyle. For some, having cancer brought an unprecedented amount of attention and (hospital-based) activity.

This is what I wrote about Sally, who had autism, intellectual disabilities, and bowel cancer which had spread to her liver, lungs and spine.

The people in the study seemed remarkably patient during their illness, and perhaps this was partly because of their long experience of empty days. Sitting around seemed much more difficult for me than for them. Here is a description of a visit to Sally at the hospice [quoted from my field notes]:
“It is hard for me, just sitting here like this. I am used to multi-tasking; I am tempted to reach for my newspaper, and briefly consider it, as an acceptable way of spending silent time together. But I quickly realise that it would achieve the opposite: it would block her out. So I sit, just as she is sitting. And I sit. And I sit…
Another feeling emerges as I am sitting with Sally, and it is the feeling that I am slowly becoming disabled. The tedium of nothing happening, of being so utterly dependent on others to make things happen in your life. Because this boring sitting-around is, of course, not new to Sally. Like many people with learning disabilities, she is rather expert at it. She is patient; her expectations of life, of her days, are not high. I can manage it for an hour, but a whole day would probably make me want to scream. Of course, the comparison is slightly unfair, because I am not ill. In her position, physically weak, life very slowly ebbing away, it is not particularly unusual to accept doing absolutely nothing, to preserve energy for visitors. But even so... it takes an hour of sitting for me to glimpse just a shimmer of what it feels like.”
Now, I am ill. Not nearly as ill as Sally was, but ill enough not to be able to read an entire newspaper. That was OK for a while, but now I am getting impatient to start my life again. My expectations of life are high, and that makes it all the more difficult to be patient.

Copyrighted image taken from Going To Out-Patients

Let’s look at the bright side, though: my time spent patiently observing things in the hospital has led to various ideas for improvement.

I think I know how things could be better organised. More importantly, I have also observed what makes a good receptionist or an effective health care professional.

If you are a hospital manager reading this, you are welcome to get in touch, and I'll tell you all about it. However, I’m afraid I won’t be able to see you until I feel better, after all my treatment. Some time next year, perhaps.

By then, of course, you will just have to wait until I’ve found a space in my diary.


  1. Hurrah, Irene. You've captured exactly the problems with outpatient clinics, and I hope you get flooded with requests from hospital managers in a year's time, and can help them sort out the (often) horrible experience of being patient. As a high-level user of the NHS, most of my experiences have been great, but the bad ones really stand out. I feel I become institutionalised and dehumanised after a long patient wait, unable to engage fully with the consultant I am eventually seeing. I wonder if that is the experience of many people?

    1. Yes, it's extraordinary how one poor experience amidst lots of good ones can be utterly devastating and stay with you... It seems that being treated as someone who matters, is key. Even if the wait is unexpectedly long, it really helps if someone acknowledges this and tells me what is going on, not just as a general announcement but as an individual. Looking me in the eye, personally. Irene, I'm sorry, but this is why the doctor is seeing you later than expected.
      I will ask the hospital managers to form an orderly queue outside my office next year!