Battles… won, I guess!

On Monday I got a message from Rosa saying she was free tomorrow and would I like some company for my zapping? Yes, I would. So off we went. I’d cancelled the dreaded hospital transport so I could walk in, because I was having a call with my bestie in Sydney. So I walked down the main road and across the canal, catching up on what had happened in the week since we last spoke. A lot, it always seems. 2-3 hour calls are never long enough.

Then I met Rosa in the foyer of UCLH and off we went down to where the big zappy machines are hidden in the basement. I usually (usually? I’ve only been there four times, what do I think I am, a regular or something?) don’t have to wait very long before they take me in but we were there for about half an hour before I was called. So I was particularly glad to have the company.

When they called me, they started our daily ritual of asking me what I wanted to listen to (it was the Hamilton soundtrack this time) and this time also asked who I had there with me.
‘That’s Rosa,’ I said. ‘She’s my best friend.’
Necessary detail, I’d decided.

After all your lovely comments, saying that making me carry around my Do Not Resuscitate form and hand it to them every time I go in is actually quite insensitive and there should be another way, I realised that yes, you’re right. There should be another way. It’s 2022, we have computers, patients should not be tasked with the responsibility for their own paperwork and told to carry it around and hand it in and take it back every day. Especially when it’s something so… traumatising.

So I decided to get up the courage to say something. To say we needed to find a different solution because it’s causing me quite a bit of distress. I’d practiced what I was going to say to Katie in Sydney, and then to Rosa as we walked down the steps to the basement. I’d thought of all the possible answers they might have and what it all might mean and was ready to stand my ground on the matter.

Clarence and I marched in, ready to have a difficult discussion. The radiographers were all lovely as they always are and I got my form out ready for them to ask for it, and put my serious voice on:

‘It’s actually causing me a lot of stress having to carry this around and hand it to you every day, a form which is literally about my death. Pulling it out every day is re-traumatising me. So I’d like to talk to you about finding a different solution to me having to be responsible for it and handing it over.’
‘Oh yeah, that’s fine,’ they said. ‘You don’t need to do that anymore. We’ll just update it in the system each day. No worries, you can put it away.’
‘I… you… what?’
‘Yeah, don’t worry at all. Just keep it in your bag.’
‘Well I don’t really want to do that either.’
‘Well if you can just put it in there somewhere and forget about it. But we won’t need you to give it to us anymore.’
‘I… uh… Ok.’
‘Are you and Clarence ready?’
‘Um… yes.’

And we got climbed up onto our little metal bed and got ready for our zapping, as I was told that there are a million things that Alexander Hamilton hasn’t done, but just you wait.

Me too, mate, me too. I am also not throwing away my shot.

I had a good laugh about that after. Right well, I guess we won that battle? Though it seemed to have been fought for me before I arrived… Don’t tell them that it might go in the bin in a safe space for keeping. But I might not always bring it… (hush).

We went for coffee after and shared a cinnamon scroll and I figured that despite this daily zappy zappy business, life is pretty good.

7 Comments Add yours

  1. Sheila Arter says:

    It’s so good to see you have such great friends to support you.
    Im so glad you spoke up about what was troubling and causing you distress so the paperwork issue could be resolved.
    Carry on having many more enjoyable days.

    Like

  2. Jane Doherty says:

    So good to have Rosa with you, especially to share a cinnamon scroll. It looked delicious.

    Like

  3. Glyn says:

    It was so crazy you had to be put thru that extra trauma each time 💪💪💪💪 you certainly deserved the yummy goodies afterwards ! So better to have company – Rosa suits her new eyeliner 🤪

    Like

  4. Tochi Balogun says:

    Hold on to that shot, beautiful brave one, you’re doing great and we are all inspired!

    Like

  5. Sharon Daly says:

    Such good news! One less daily stab of worry. I admire you so much, Jen. You’re a star!

    Sent from my iPad

    >

    Like

  6. Eilish says:

    So happy that you spoke up about that damned form and got things resolved! Xx

    PS I’m loving the non-sparkly but smokey eyeshadow!

    Like

  7. annie Payne says:

    Hey Jen
    Its swell to catch up on your journey
    I to have signed the “not to recusitate” on my simple plan for leaving this planet.
    I hope they honour this as we all have an image of ‘over being in this place’ but totally accept
    this is so young for you to have to face.
    I dont think there is any age that this is dictated.
    Your fight is stronger than most I think so we will love you all the way & appreciate the opportunity to share
    with you.
    Bunch of hugs to you Jen and family.
    xo Annie P

    Like

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