Jane speaking: Sitting at Philip’s bedside in the ward, waiting for the doctor to visit.
I was shopping for new pyjamas for Philip in Sainsbury’s when a call came from the nurse.
‘He’s going for his endoscopy now, not waiting until 4pm’.
‘I’ll be there in a minute’. I feel devastated that I am not there in his ‘hour of need’. And what’s more, I’m in Sainsbury’s!
‘No need to rush, he’ll be delivered back to the ward and you can meet him there’.
I wasn’t having any of that though – I knew from the previous time what it was going to be like, (unpleasant) and I wanted to be there for him. I left the pyjamas and rushed to the car.
Arriving at the Endoscopy Unit reception desk, I explained what was happening.
“’I’ll go and see if he’s there’ said the nurse. Returning a few minutes later, she confirmed he was in the treatment room.
‘He’s there all right, and hopefully they’ll come and tell you when he’s finished’.
It was the ‘hopefully’ bit that made me speak up.
‘I don’t feel very confident about that; I really want to be there for him; it didn’t work the last time and who knows what’s going to happen this time.’
She looked at me. ‘OK, I’ll go and see what I can do’.
Next thing I know I’m standing in the actual treatment room, and Philip is saying
‘Are you sure this is OK?’ (He doesn’t want me to be in distress, I think. But I’m clear I want to be there. All the hours of watching Casualty on the telly have inured me to what I might see – I’m not squeamish like him.)
I stand to the side of the bed, and hold his hand amongst all the different tubes. Philip asks me to say the Ho’oponpono prayer:
I love you
Please forgive me
And so I start whispering it under my breath, as the small amount of sedative starts to take effect. Two nurses, two doctors, one consultant and me. Plus, of course, the camera screen, where I gazed in amazement at the inside of Philip’s gullet and stomach. At least, what I could see of it through yet more food. Fortunately this time, because of the sedation, although there were a few groans, it wasn’t as bad as before.
But – the endoscopic camera showed that the food was not going through. I don’t know what that means, yet. Right now, I’m waiting for the consultant to show up and explain. I hope it’s not really bad news.
Later – (Philip speaking now, Jane typing)
6.30pm and Gamma Ray Man has just left. It seems that Jane knows almost as much as he knows, as he hasn’t seen a report, just spoken to the nurses, and Jane was present during the procedure! The crucial fact is that there isn’t any tube going up my nose. They couldn’t find any way through, and the gullet is blocked through to the stomach at the site of the original scarring. We don’t really understand this, but the fact is there is a lot of food debris in there which is not moving through.
‘The food you’ve been eating for the last couple of weeks looks like it’s still down there’ Raj said. ‘And it’s not moving sufficiently well.’
‘We have a meeting on Monday afternoon, 4-6pm, with the surgeons, and I’ll discuss what the possibilities are.’
‘What are they, as far as you know?’
‘The next thing to do, I think, as we can’t get the tube in in the way we were hoping, is a feeding tube jejunostomy.’
‘What’s that? And how do you spell it?’
‘It’s a direct entry into the small intestine, minor surgery’
(‘I liked that word minor’, says Jane, who’s typing this. )
‘So the idea is to introduce the possibility of nourishment and give the chance for the radiotherapy to have the required effect, because this takes time, is that right?’, says Philip.
‘And what about eating over the weekend?’ says Jane.
Raj has been promoted to a more ordinary human being, instead of a pretend superman. He replies, in a very human way, with kindly eyes.
‘There’s no way we can get more food in; all we can do is these’. He refers to the saline and glucose drips. (As we write this, he has obviously had a further thought because a nurse appears with another dispenser of phosphates in solution.)
‘I don’t know how I’m managing now, I’ve no idea’. I am amazed at how much my body is determined to stay alive.
He looked at me straight in the face. ‘Nor have I, it’s some sort of miracle. I can’t explain it at all’.
I hold my hand out to him, and feel warmed by his evident care. He is not keeping himself hidden behind a wall of cold professionalism, and I am grateful for that too. And I respect his courage.