109. Diagnosis Day


2 April 2014

It is cancer.

So there we are: I am a cancer patient. And from henceforth, I will either be a cancer patient or a cancer survivor.

(Or dead, but we won't go there.)

I felt strangely calm when the consultant told us.

She did a good job, by the way, and we joked about that afterwards, when she remembered that How to break bad news is my area of expertise. I knew, anyway, as soon as the breast care nurse called my name. They only involve those nurses if it's cancer.

[I remember this vividly. We had barely sat down when the consultant said, without any further ado, "It is cancer." I was grateful that she didn't follow the standard guidance for breaking bad news, Find out how much the patient already knows or suspects; give a warning shot ("I'm afraid the results are not as good as we hoped") to prepare the patient for the fact that bad news is coming and to assess how much she wants to know... She came straight out with it. My warning shots had already happened, anyway, the week before, when she had made her "Whatever it is, we'll sort it out" remark; just a minute ago, when the breast care nurse came to get us. Alarm bells in my head: ring ring, bad news is on its way.

"What is your job again?" the consultant asked me almost immediately after telling us "It's cancer". As soon as I reminded her, she put her arms on her desk and put her head down. Oh no. But I reassured her, smiling (yes, smiling!), that she had done it well. It can't be easy for the professionals, to have a patient like me, watching them like a hawk, analysing every bit of the interaction, including my own responses and emotions - even, perhaps especially, at such highly charged moments.]

We were both matter-of-fact, asking questions, nodding, yes, I see, OK then.

Looking at dates, getting the diary out. "When will  you do the operation?"

Perhaps the gravity of the situation hit me most strongly when the consultant turned to my husband with a brief explanation about "Your wife's cancer". 

It isn't just that I have cancer. My husband now has a wife with cancer. Beneath our matter-of-fact behaviour, I could see in his face that this was no trifling matter.

I found the breast care nurse oddly lacking in empathy, but the consultant asked if I had expected this. And I answered truthfully: Actually, I'm not surprised. Last week I was shocked, when I had fully expected to go home after the tests and that would be that, like going for a routine smear test, never anything but fine. Just the thing you need to do to stay healthy, just ordinary screening.

[That was the only mention of the breast care nurse I made in my diary on diagnosis day. But what happened immediately after that 15 minute meeting with the consultant has stayed with me until this day, and when I think of it in all its vividness, I can feel it all over again. The shaking inside, the vulnerability and the emotion. I've blogged about it once I felt able to. I have always hesitated before blogging anything other than praise for individual members of staff, because of the strong possibility that someone will link names to my nameless cast of characters. But I've come to the conclusion, rightly or wrongly, that I cannot be honest about my experiences without describing the actions of health care staff, and their effect on me - and that this is important - especially if, as is the case here, the memory still has the power to upset me a year later. To save you reading through that entire blog post on How to be a healthcare professional, here is the relevant part for Diagnosis Day, posted on 23rd July, almost three months after the event.

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, 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. She probably had no idea that underneath, I often felt shaky and utterly vulnerable.

Now, back to the diary entry for Diagnosis Day.]

I have been coping well all day. Now that I know I am having surgery, I did some retail therapy, bought some loose fitting tops, something that slides easily over a painful arm and chest.

My husband said he would absolutely hate anything to do with hospitals and needles and pain, and it would worry him, but it doesn't worry me.

"What worries you?" he asked.

What worries me? The children worry me. How to keep them from worrying? How to make sure they have their mum?

We must tell them, because I am going to tell everyone. I must tell people why I won't be able to give those lectures in May.

We will tell the girls tomorrow. My son is going on a 10 day school trip tomorrow and I don't want him to know before he goes. He won't have anyone to talk to about it, and although he won't want to talk anyway, it may help him to see that life won't collapse around us, life will remain normal. We'll have to wait with telling the girls until he has gone.

I am now waiting for an MRI scan and that takes a while.

Alarmingly, the consultant said that although it feels and looks (on the ultrasound) like a small and early cancer, it might be bigger than it seems, and they can only tell from the MRI scan results. Only then can they decide whether a lumpectomy will suffice or whether it will need to be a mastectomy.

I am trying not to allow that possibility yet: the possibility that this is anything but an early and easily treatable cancer.

So I have been OK, telling friends, finishing some work (there's that grant proposal to be submitted next week), cooking supper, watching TV with my older daughter, reading to my younger daughter.

But the tears are pooling, I know they are.

I am trying not to look sideways, because in the corner of my eye is that question looking straight at me...

What if it isn't OK?

What if this cancer is a long term companion?

Worst of all: what if my babies have babies of their own, and I am not there for them?