Who’s in charge, and does it matter?

I’m writing this hurriedly after an appointment laden week. It’s been a sea of waiting rooms and repeating the same things to different faces. I’m asking some questions that I don’t necessarily have the answers to, and then I’m going to finish up sharing my personal waiting room survival kit. Here it goes!

Earlier this week I saw my Neurosurgeon. It was a standard procedure follow-up – you know, to see how things are going – with my rehab, recovery and brain.

Since she is one of my favourite consultants it’s always a pleasure to see her.

On the way home – in traffic with one very impatient Uber driver, I thought about the sheer number of people involved in the care of someone like me – that is, living with a brain tumour.

It’s a bit like a clinician-led relay race. Generally speaking, it kicks off with a Neurologist, Neurosurgeon or maybe an A&E department. And, then? Well, it gets messier. The race begins, and the baton is passed around clocking up some major miles.

Who’s in charge though? Overall?

Neurosurgeons want the thing out, but also have specialist knowledge about the long-term management of specific tumour types, like, for example, Gliomas.

Oncologists, on the other hand, seem (in my experience) to be a bit more broad-brush. Find the most effective way to target those unwanted cancer cells and get on with it.

Whilst in the consultation, I couldn’t help noticing that my surgeon hadn’t been part of a recent letter between several members of the team.

You know that feeling? When you realise that you weren’t included in the email about “Joan’s” leaving do drinks? Well, it happens to the best of us. Even Neurosurgeons (side note: I am being entirely tongue in cheek here… but you get the idea).

Given the fact that all the systems are fairly joined-up and accessible, technically speaking it probably doesn’t matter. But, who decides who gets that cc’ and who doesn’t?

My Oncologist may be wearing the trousers, but my surgeon still needs to have a say in it.

If you are also cared for by several clinicians, how do you know who’s in prime position? Maybe you feel confident that it’s all really clear-cut and that’s great! Let me know – is it just me?

Sar x

My waiting room survival kit

Hospitals have a number of things in common. You’ll probably have to wait, temperatures will fluctuate, and if you have a memory like mine you’ll need to take a list.

Here’s what you’ll find in my waiting room bag.

Layers

Those fluctuating temperatures mean you need to be able to strip off at a minutes notice. Opt for lightweight jackets, and cardigans and you’ll be ready for any rising (or falling) mercury, as well as unexpected blood tests (think sleeves!).

Something to read

The waiting. The waiting. The waaaaiiiitttting. Books are a great shout. Even if it means just carrying one around and actually spending your life on Instagram. You’ll feel like a better person.

Phone

You don’t leave home without it (see point above on Instagram), but your phone is also handy when it comes to appointment dates/times and keeping notes on things you want to ask or say.

Hand cream

All that hand gelling. I mean, it’s brilliant for infection control but your hands don’t love it all that much. Give them the perk up they deserve with prettily packaged, great smelling, hand cream.

Lipstick & balm

A cheery lip is the way to a cheery heart (mostly). Make sure you’ve got some colour on ’em as well as a balm, in case the air-con/heating causes aggro. Don’t forget your mirror.

Folding walking stick

OK, so this won’t apply to many of you. But I find a folding stick is the best solution for a day that involves a lot of sitting to standing action. Walking sticks get in the way and have a habit of falling over. It’s irritating, but, a folding model completely deals with this.

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2 Comments

  1. Brian Ockell
    September 17, 2018 / 7:30 am

    There is so much truth in this wonderful blog. I often try to discern whether the writer is from the USA , which is more usual, or the UK. It matters little but helps me better understand different health systems

    • SarahGaffney
      Author
      September 17, 2018 / 7:33 am

      Thanks for your comment Brian – I’m in the UK 🙂

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