So we all know how traumatising my first drain experience was. For that reason, the Registrar said he wouldn’t do the other one that afternoon. I’ve been trying to work out how things fit in to the passing of time and it’s all over the place. I said that the first drain came out on Thursday, but photographic evidence says it was actually Friday.

Anyway, this isn’t particularly important except that when the Registrar said ‘we won’t do the other one today, we’ll do it tomorrow or the next day’, it just so happened that ‘tomorrow or the next day’ were both the weekend. And he wasn’t in. Timed that well, didn’t he!

So on the Saturday they came in first thing and said they were taking the other drain out and I told them that I needed pain killers beforehand because it was a horrific experience yesterday.
‘Oh it probably won’t be as bad this time…’ They told me.
‘I’m not taking any chances…’ I replied.

So they prescribed me Oramorph (a syrup-form of morphine) to be had half an hour before the drain was meant to come out. And I was told to keep pressing my morphine button (everyone kept telling me I wasn’t pressing it enough). So I kept pressing it. And waiting. And pressing it. And waiting.

Eventually the doctors came in again and said that it was too late and they didn’t want to take it out and then leave for the day. I agreed. We decided tomorrow would be the day. Before they left, they told the nurse that they wanted the drain de-vacced in the morning before they came back. She said she didn’t know how to and they said ‘it’s easy, just do this and this and this.’

I stressed about how horrible that part of the process was the first time. The doctors said to have some Oramorph before it was done. I wasn’t convinced that was going to help but that was the next day’s problem. Someone had said along the way that the seal had been broken during the first de-vac, so I hoped that would mean the second experience would be less traumatic.

I’d been doing a good job of preparing for the experience that day though… That amount of morphine was horrible. My pain was still constant and loud, but I felt all floaty and slow. I had to take myself off and lie down and just have some time to myself listening to music. The combination of pain and morphine was not something I would hurry to experience again. I felt like I was hovering a few inches above my body.

The following day I was once again given the Oramorph. The nurse then clamped the drain (as if to prepare to de-vac it) but then went to leave and go about her other tasks.
I said ‘Oh, they said it needs to be de-vacced before they come.’
‘No,’ she said to me, ‘clamping it is fine.’
‘But they said it needs to be de-vacced, which as they explained yesterday means doing this and this and this.’
‘No, they said that it’s fine to just clamp it.’
‘Well, I’m not sure that’s the case. Could you check?’

She went to go and call them. I can imagine how this phone call went. Well, I heard one part of it.
‘Hi, I’m just calling to check that it’s ok to clamp the drain?’
‘Yes, you can clamp it.’ (I’m guessing this part)
‘Ok, thanks.’
She then comes in to me and says ‘no, it doesn’t need to be de-vacced, it’s fine to just clamp it.’
‘Ok…….’
What more can you do?

The doctors came in a little while later and the first thing they did was pick up the drain and say ‘why was this not de-vacced?’
‘RIGHT?!’ I replied, feeling like I was a doctor too, like we were all in on this together. ‘I told the nurse that was what was needed.’
Doc number 2 said ‘Oh, she called me to ask if she could clamp it… I didn’t realise she meant instead of de-vaccing it…’
Jen, who seems to think it’s important for everyone to know that she’s right, then said ‘could you please go and tell the nurse that you did want it de-vacced AND THAT I WAS RIGHT?’
‘Of course,’ Doc number 1 said.

I don’t think he did do that, which I think is probably fine. I’ll let that one go (you can tell I really did well at letting it go considering I’m writing about it here, weeks later)

But the world didn’t end – it was also fine for him to just do it then, too. And there was nothing even remotely as traumatising as the first time. In fact, I didn’t feel anything. Then he set about cutting the stitches and pulling it out. That part hurt a lot the first time too, so I wasn’t looking forward to that bit either.

‘What kind of music do you like, Jen? Who’s your favourite band?’ He asked me as he worked away.
‘Oh, music?’ I replied, pulling my mind away from the pulling at my head. ‘Oh I suppose The Beatles are my favourite…’
‘I’m trying to remember what you said last time.’ I don’t know whether he was bluffing or if this was a memory he had. Either way, I felt special.
Then he asked Doc number 2 what his favourite music is and we discussed that for a bit. I felt a bit of a pull and a small bit of pain, but hardly anything. Nothing I couldn’t handle without a second thought. I was then amazed that after we had all discussed our music tastes, I seemed to be detached from the drain.
Hardly felt a thing.

He was gentle, he took his time, he made the effort to chat. And what a difference it made. I am well aware that the de-vaccing part was particularly bad, which was pretty much unique to my first experience. But I still think taking a bit longer and being more gentle makes a difference.
Not to mention feeling prepared.

Psychologically, they say there are two coping mechanisms – Monitoring and Blunting. The example that is given is when you’re at the dentist – do you prefer to know exactly what’s being done or do you prefer to close your eyes and just let them do whatever they need to? The first is called Monitoring and the second, Blunting.

To be perfectly honest, I haven’t met many people who fall under the Blunting category. Perhaps to some extent it is an age thing… We’ve grown up with the internet, and we are used to knowing everything. We don’t like to be surprised. Especially when it comes to health things. But I know people of all ages who want to know what’s being done to them, who want to know what to expect. And I do know health care professionals of all ages who have said to me that preparation and communication is incredibly important. So I wonder where the ball is getting dropped with regards to adequately preparing someone for what is about to be done to them…

Perhaps our ideas of ‘adequate preparation’ aren’t quite meeting in the middle. Perhaps when you’ve done something many times you forget what constitutes ‘enough’ to the patient. Or perhaps so few times, and you’re not entirely sure how to prepare someone.

But these are our bodies. And through all of this cancer stuff, often the only way we can have any semblance of control is by understanding what’s being done to us, and knowing what to expect. So I think it would be safe to say that most people would want to know exactly what to expect in any new situation. I think healthcare professionals should generally take more time, where possible, to prepare their patients for what they’re about to do to them.

Don’t wake them up in theatre after a surgery without first telling them that’s what’s going to happen and explaining why it’s going to happen and that it’s not anything to worry about.
Don’t go cleaning out a tracheostomy and choking your patient before explaining exactly what you’re about to do and that it will be unpleasant but these are the reasons for it and the feeling is only temporary. (I don’t think I adequately wrote about that one at the time because I was scared of offending someone. Evidently times have changed.)
And don’t go de-vaccing someone’s head drain without first describing what it’s going to feel like and how long it’s going to last, etc.

I’m aware that some of the types of information like ‘how it feels’ is going to be difficult to come across for someone who hasn’t been through it. But I’m sure the information is out there…

Anyway, both drains removed, and I was glad to be a bit more mobile so I could zoom over and sit on C’s bed to chat, or get to the bathroom more easily. These moments are progress. Drain removal is a big sign of progress.