Oesophageal Patients Association

"How are you?" - Is it really a question?

For most of my life I answered this question by saying "Fine, thanks" or "Not bad for a Monday" and having completed the ritual greetings, we then carried on to whatever we really wanted to talk about.

But after being in hospital for the best part of three months, losing a lot of weight, and looking distinctly rough, I noticed that the question tended to become "How ARE you?". I started to think that people wanted to know about what I had been through. And of course it was a genuine question. They were curious - interested - caring - and pleased that I was still alive. They are my friends after all. So I started to tell them about how I was getting on medically. It was a bit of a job to know when to stop, because for one thing it was difficult to explain everything, and for another, for the previous 3 months I had been thinking about very little else but my medical progress, so all the details came spilling out, quite naturally.

But after a while answering that simple question became a bit of a burden, on both sides, especially explaining what had happened (my oesophagus had split during an attack of vomiting). I got used to seeing the shock in people's eyes when they saw me for the first time after coming out of hospital. But I also realised that their eyes would glaze over when I was regaling them with too much detail. So I soon changed to responding "Much better thanks!" (not always quite true) and we then carried on much like before. I understand why some people simply never tell anybody else outside their family about their treatment, especially when cancer can be a taboo subject; everybody seems to have a collection of spectacularly awful things that friends have said to them.

But I still needed to talk a bit and come to terms with my situation and what had been a traumatic experience. Reflecting about things with my wife was the most helpful thing, but she had been carrying the burden of anxiety for far too long and we needed to try and restore normality to our lives and conversations.

Coming to terms with having been seriously ill is not as easy as we think. It takes time to work it all through in your mind, to grieve for lost good health and fitness, and to find a 'new normality' for what you can do, and eat. It often helps to talk about it with somebody who understands.

After a while I went to an OPA meeting at Guy's hospital. On the first occasion I was a bit anxious, because I knew that many people there had had cancer and I did not know what to expect. But as soon as I went into the room I saw that everybody looked normal - and friendly. David Kirby welcomed me. Everybody I talked to seemed automatically to understand about this confusing and difficult process of recovery. So, OPA meetings became something of a sanctuary where I could talk about what I was feeling without the risk of people saying the wrong thing.

At the time there was a possibility of having my oesophagus 'stretched' to make it easier to swallow food past the operation scars. Talking to others who had undergone this procedure gave me great reassurance (I had been really worried about it splitting again).

So hopefully these pages on healthunlocked.com can create something of that ethos and atmosphere, especially for those who cannot get to a patient support meeting, or feel that such events are not for them.


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