What just happened……..?

A whirlwind comes into my bay and the curtains are pulled closed around us.
In front of me stand three people.
‘Do you remember me? Do you recognise me? Do you know who I am?’ Says the one who is clearly in charge.

It takes me a long time to recognise anyone in hospital Even if they’re my friends. You know how it is when you’re not expecting to see someone and they’re there, it takes a few extra moments to put two and two together. And I just see so so many people a day, and my eyesight is also pretty rubbish at the moment.

So I wrack my brain trying to work out what’s going on. But yes, I place him, he’s an oncologist I met once, briefly, a couple of weeks ago, a new consultant. I wish he’d just said hi and introduced himself like any normal person, maybe mention ‘we met two weeks ago before you started chemo’, rather than making me play some weird sort of guessing game to prove I remember him. Honestly, I come across so many (masked) people I really don’t need to be challenged to then recognise their two eyes. I’m ill, I’m in hospital.

‘Um yes, hi.’

Apparently they hadn’t been convinced that the infection was in fact in my face, despite me telling them, but seeing me in person (with the ol swollen face) they finally thought oh yeah it could be in the face actually. It’s seems so weird how unkeen they are to commit to anything though.

I’m like look, I’ve had an infection in my face for months, I know this. Now my whole face is swollen up, just like it always does every other time I end up with an infection in my face, the right antibiotics should get it sorted.

Then I get responses like ‘oh yeah maybe, but maybe it’s the PICC line?’ It’s not the PICC Line.
‘Maybe you’ve got a swollen face but maybe it’s actually some other thing that’s causing it? I wonder who we can refer her off to?’
Come on people, Occams Razor. It’s probably the infection we know about causing the infection we’re looking for. Don’t you think? Maybe?

Anyway, he came in guns blazing. I was thinking we’d just have some more antibiotics, glug glug, everybody’s happy. Though I’d appreciate finally finding the correct antibiotics at some point. But he immediately starts saying ‘ok so I think we’ll probably need to do something drastic, get the surgeons involved, put a drain in your face to drain the liquid out, so we might just do it or we might need to take you under general anaesthetic for it. Do you consent?
‘Just do it? You mean, without anaesthetic?’ I ask
‘No, we’re not the middle ages.’ He says with a laugh.
I mean considering some of the things I’ve endured, anything is believable by this point.
But ok, local or general, a drain, ok. If it needs to be done it needs to be done.

I asked why he thought this time was any different from other face swelling? We usually just waiting until the antibiotics kick in and then it starts going down again. Why are we trying to bring surgical options into it?

He explained that we need to manage it quickly so that I’m all up and ready to get going again by the time it’s chemo time. We can’t risk going into the next chemo with the infection still there so we might need to do something drastic to shift it. Because if we’re going to have any hope with the cancer, nothing can hold us back from doing the next chemo. I obviously agree. If sticking a straw in my face now means I’ll be able to have my chemo when I need it, I’ll do it. We’ve got just over a week until the next round of chemo is meant to start.

Then, he said to understand what we need to do, I would need to have an emergency MRI. An MRI. A bloody MRI. I just brooooooke. I cried and cried and I’d been all ‘yeah all this is fine’ and then when he said MRI I just though how bloody rude can you get. I’d had one 2 weeks ago, and one 4 weeks before that. And I’ve got one coming up in January. And you’re just telling me I’ve just got to cruise on down and get an MRI? I don’t even have anyone to bring with me to hold my hand (though I do have Clarence).

But then it all got a bit…. surreal.

Onc: just remind yourself when you’re in the MRI that you can literally just pull yourself out of it. There’s nothing holding you there,
Jen: I mean you can’t, they clip a cage over your face to hold you in and still and even if you press the button it takes a couple of minutes for them to get you out.
Onc: That’s not true. None of the MRIs we request contain a mask.
Jen: Not a mask, it’s like a cage that clips on over the face.
Onc: Well ours don’t have that.
Jen: They do, you literally ordered me one 2 weeks ago.
Onc: No, that’s not true. That doesn’t exist.
Jen: It is… The cage is part of the receiver coil, without it the MRI wouldn’t actually… work.
Onc: no, that’s not true. There’s no cage, there’s nothing holding you in.

Oh to go through life with the confidence of a Consultant talking about something he’s never experienced but knows he’s right about, so much that he tells someone who has experienced it many times that he absolutely knows better and they are wrong, even when they explain the science.

He also did the ‘I know it’s not nice that it’s loud’ thing. And I told him I love that it’s loud. If I can get through to the loud bit then I’ll be fine. It’s just the being shot off into the middle of nowhere and left there alone, indefinitely and trapped that I’m not a huge fan of.

He said some other strange things like ‘maybe take your necklace off now so you don’t forget’ like he really couldn’t understand that I do this literally ever three months. Or every two weeks at the moment, apparently.

I cried a lot when he left. Not because he’d upset me, the chat with him was fine. Baffling, but fine. Though actually listening to me and being supportive in my moment of MRI panic would have been nicer than just trying to drive home that he was right (especially when he was wrong and had no idea what he was talking about). I just didn’t know how I could possibly face another MRI. So I just sat on my bed and sobbed and sobbed. I couldn’t stop. It all just came out, everything I’d been holding together… I had a good cry, feeling sorry for myself. Then I went to the bathroom and cried in there for a bit. Then I went back to my bed and sobbed for a good while longer. The good thing though, is that crying makes you super tired so I slept really well. All rested and ready to try and work out how on earth I was going to make it through an impromptu Friday morning MRI….

7 Comments Add yours

  1. Glyn says:

    You must be exhausted …….so wish someone can be there to hold your hand🙏 your courage in the face of these daily ordeals is inspiring 🤩

    Liked by 1 person

  2. Stacy says:

    I am appalled, truly shocked and appalled, by the lack of decency and compassion in the doctors you’ve seen! And their arrogance! You are a warrior, my dear, strong, and smart, and courageous! Oh what courage you have! Your writing touches my heart, I pray continually for you 💕

    Liked by 1 person

  3. Jody says:

    Sending love to you. Always love and relief from this infection so you can get that chemo!

    Liked by 1 person

  4. Eliza anne killeen says:

    My heart breaks for you Jen…it all seems so callous and thoughtless. Is there no patient advocate to help you or one of the previous oncology consultants that actually listened to you previously that you could turn to for help now? I can’t imagine how exhausted and worn down you must be and going through it alone is so cruel. But if good wishes can help please know they are always with you.

    Like

  5. Eva Meland says:

    That consultant needs to go to empathy school! I feel for you… perhaps it’s good to have a meltdown from time to time. As you said, you’ve been holding it together for so long. You’re allowed to be human you know. Sending you warm hugs from Sydney xx

    Liked by 1 person

    1. Jen Eve says:

      A timely meltdown is always a good idea, it definitely helps to move through things, I’m a big fan! Thanks for the hugs, I can feel them and I’m sending some back xx

      Like

  6. jenanntuck says:

    Yes I agree with all of the comments. Sending love. Thoughts and love are with you. Xxx

    Liked by 1 person

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