Thursday, 14 August 2014

31. Patients wear make-up

All of a sudden, I am feeling much better.

Everything is relative, you understand. I won't be doing the London To Brighton Bike Ride quite yet. But I heard myself singing in the shower this morning. (Granted, it was And now, the end is near, and so I face the final curtain... but even so.)

The rate this is going, I might even have lunch and a conversation at the same time. Dear me, I can't keep up with my own life.

Just for the record, though, here are the next developments on the side effects front: Shortness Of Breath and aching hip bones.

"You took a long time," my husband observed when I returned from what should have been a 15 minute morning walk to get the newspaper. It was the SOB. Like an octogenarian with a heart condition, I had to stop several times.

It must be the depleted blood. With both my white and my red blood cells in my boots, there is probably not enough oxygen getting to my lungs. Oh, and then there was something about chemotherapy attacking the heart muscle. (I had to have an ECG before the start of chemo, just to check that my heart was up to the onslaught.)

I am not really bothered by my puffing. There is no particular need to make it to the top of the hill, and no reason why I can't sit down several times and admire the view on the way. My expectations are low. It's better that way: everything is a bonus.

It is quite extraordinary how you forget, even if you think you never will.

"How have you been?" the doctor will ask me shortly before the next chemo is due, pen poised in case my body has collapsed under the attack and the arsenal of chemo drugs needs reigning in, or the side effects need stronger ammunition.

"Fine," I will say. "I've managed." (Because this meeting with the doctor will happen in my promised Good Week, when my brain, if it has any sense, will have sent memories of side effects to an inaccessible deep dark pit.)

Like other patients in the waiting room, I will put on my make-up for the appointment with the doctor. I will rub some gel into my  hair (if there is any left) and I will smile. How am I? I am alright. I am coping. I am looking well, thank you, yes, everyone says that.

I've been told to keep a daily diary of side effects, so that I can report back accurately. But when I look at the list, my eyes glaze over. It says Fatigue every day, but what does that mean, really? Yes, I have been tired every day, but the type of tiredness has varied. Sometimes I've been splayed onto the sofa for hours as if pressed down by a heavy blanket, hardly able to move; other times I've gone for a nice walk along the sea shore, thinking I could easily make it back, only to sink down onto the pebbles all of a sudden and instruct my husband to go and get the car.

And nausea? Well, yes, a bit, but it wasn't that bad. Was it?

For the researchers among you (everyone else can skip this paragraph): it's the difference between questionnaire data (fatigue: tick; nausea: tick), in-depth interview data ("yes, I've been tired and a bit nauseous, but it wasn't too bad really"), and ethnographic data, with participant observers sending in daily reports from the battle field (this blog).

Do doctors and nurses ever know the truth about how their patients have been?

Relying (as they do, because what else can they do) on tick lists and patient interviews?

There are, of course, patients who are unable to stop themselves from sobbing in the doctor's office and who freely admit to feeling awful. But there must be many who, like me, seem to be perfectly OK, in control, articulate, on top of things. Easy patients, perhaps.

It is one reason why I need to write this blog, even in the low days. Especially in the low days. Because if I don't, I might fool myself (along with fooling the doctor and the nurse) that everything has been fine.


  1. Irene Do keep writing. Your insights are profound and if only all patients wrote a proper diary of their experience. You are so right about forgetting- if we didn't forget who would ever have another baby, for example!

    1. Thank you Sheila, I'll try to keep up the blog! Indeed, the parallels with pregnancy keep coming to me... like the way other women only seem to remember the unpleasant details when you are pregnant, and insist on telling you everything (seeing it as helpful advice). I suspect that if the experience of cancer treatment was as widespread as that of pregnancy, I would never hear the end of other people's past misery. I will try to remember, always, that (a) nobody needs advice on how to cope with cancer, and (b) the next woman's cancer experience (like her pregnancies) will be very different from mine...