After a surgery, especially one so big with so many unknowns, you’re left trying to regain consciousness while also piecing together the bits of your body. What’s still there? What’s gone? What do you have attached to you that wasn’t there before? You move certain parts of you, touch things either with your hands or your mind, check to see what you remember and what feels new.
Unravelling the painful areas and trying to draw back to the exact part of you that is screaming that it’s hurting.
The nurses are left trying to take stock too – What is hurting her? What is she complaining about? How can we make her more comfortable?
So let’s take stock.
My head was screaming. There was so much pressure, left to right, but particularly behind my ears. It turns out I had two drains, one one each side. The tubes came out behind each ear, but each made its way up to the top of my head. When I put my head back on the pillow, they hurt, a lot.
The pressure was partly due to that, and partly due to the dressing that stretched from one ear to the other, over the top of my head. I had a big cut across the top from one ear to the other, you see. One of the three ‘access points’ to my tumour. The headband is lovely, light blue. I call it ‘surgeon chic’. People thought that it was just a headband and didn’t realise it was a dressing. Apparently it is some new fandangled type of dressing they were trying out. I’m here for it. It’s cute.
But it really feels like I have a super tight headband on my head. The type that is really hard and pushes tight into your head. All my gals will know what that feels like. It gives you a major headache, right? I have got a bit more used to it, but I suspect it’s somewhat causing the constant headache that I’ve had. Though perhaps that’s also related to the huge cut across my head and extensive surgery I’ve just had…
Someone mentioned I get to keep my new style for 10 days. Also, a later investigation by my ward buddy showed that my head has been shaved under that band, all the way across my head. So that’s going to be wiiiiild.
When I woke up it felt like my head was tethered, tightly. I think the drains had been placed so that I couldn’t move my head… You know my MRI anxiety – well it’s mostly related to being tied in and not being able to move. Same applies here. When I couldn’t move, I felt panicky. So they re-placed the drains so they were looser and I felt less constricted. I still had monitoring pads all over my chest, which is always uncomfortable but I’m used to that. Though I’m sure I forget it until I’m there.
My tongue tentatively poked its way around my mouth, trying to understand what was going on in there. There was a plastic plate that covered what used to be the roof of my mouth. And more recently has been the skin and muscle from my back. Cool.
But as I explored, I found these little pointy things on the plastic plate. Teeth. I had teeth in my mouth. TEETH! I was happier than I could ever explain.
After the first surgery, I looked at my eyes to try and see Jen inside the foreign vessel that was my face. This time I had only one eye for reference. I think if I had woken up with no teeth as well, I would have struggled a lot more. There is trauma related to waking up with no teeth, as it happened 2.5 years ago. Waking up and thinking I had gone back to that PLUS having lost an eye… Finding those teeth honestly decreased that trauma by so much. When I told my friends this fact, they cried. They knew how much it would mean to me.
I know you all know that I wasn’t completely happy with my teeth. But that doesn’t mean I’m not still completely enamoured with my teeth team. They were there through this surgery. They dropped everything to get there within days notice. And they worked tirelessly throughout the surgery so I didn’t have to wake up with no teeth (among other things they did). And these teeth are temporary! How are they such great people?
They made my new plate/teeth on the spot during the surgery. I wasn’t expecting them. I’m told the surgery lasted so long because they were getting it right. They could have easily just made a plate and left me toothless, but they didn’t. They understood how important it was to me and they made it happen. They popped in first thing in the morning of my surgery with a portable drill and various kit and took my teeth away, so for a short amount of time before the surgery. I had no teeth and really couldn’t speak. I teetered on the edge of the trauma and tried to push it away, I had to concentrate on other things. I would deal with that on the other side. But I woke up without that trauma.
And it’s so hard to work out how to properly thank them for that. But I sent them both a message after and thanked them. I hope they understood. I hope they know.
Catheter. Look, some people don’t mind them. Some people find them uncomfortable. You know me, pain is my body’s response to everything. So catheters hurt me. A lot. Yes, every time it moves, but even when it’s just sitting there. It just hurts me the whole time it’s in. They put some gel ‘down there’ to try and numb it which I appreciated but it didn’t help. That’s not that bit that hurts. It’s having a tube ‘up there’ that hurts. I am well aware some people wear them for weeks and they are fine with it. Or they just get on with it. But not me.
I was so glad to get my catheter out on the second day, I asked it it could come out and they decided that would be ok. Thank goodness. I was slightly worried I then wouldn’t be able to wee – this is what happened after my surgery 2.5 years ago. They had taken it out when I woke up and I wasn’t able to urinate so they had to put it in while I was awake. I’m traumatised by that experience, so I did not want it to have to go back in after having it out. But it wasn’t necessary. On day 2, the day after surgery, I walked myself to the bathroom for a wee. Best wee of my life.
Something felt like it was tapping me on the cheek when I moved, but there was nothing there. It turns out it was the packing inside my cheek moving around. It rattled when I moved. It didn’t hurt, but it felt incredibly weird. There was something in there that wasn’t there before. In fact my bracelet said ‘Intentionally Retained Foreign Object’. When I read that I felt a bit more compassion for the packing. I too am an Intentionally Retained Foreign Object.
I also had air going through into the side of my facial cavity, which just felt super strange. They told me not to talk. Yes, I found myself in the position once again where I could not talk. They got me a whiteboard and I was immediately rushed back to memories of my tracheostomy. I had been repeating to myself like a mantra ‘at least I don’t have a tracheostomy’. I felt like I could handle anything as long as I didn’t have a trachy. Not being able to talk is obviously nothing compared with that but it’s a memory, isn’t it. They got me a whiteboard and I was back to writing.
I was told that the problem would only exist for a couple of days, until things settled. But it wasn’t great to be blowing air up there. So they decided to shove something up my right nostril. The one that is blocked off. It looked like a huge piece of foam, but I was promised that it would fit. I didn’t want it, but they said ‘let’s try it and see’. So up it went. It fir but it felt horrible. So much had been done to me, the last thing I wanted was some painful, uncomfortable thing shoved up my nose. So I waved my hands – no, I shook my head – no, I had fear in my eyes – no. So they took it out. I was much happier not talking. I’m also not convinced it actually helped anything.
My eyelid, of course, is sewn shut. I believe the muscle from around my temple has been stretched over the gap that my eye left, and my eyelid closed over it. I will, of course, talk about the loss of my eye in great detail in due course.
Once again, my face was swollen. Nothing on what it was the first time, but still significant. The swelling increased over the following few days before it was able to start getting better, as expected. They say day 4/5 is the worst so it really helps to be armed with that knowledge. Myy lips, and everything inside my mouth were also swollen, of course.
I had no feeding tube. They had told me I would, but I woke up without one. This was a relief. I found out that they had tried, but the mess that they had previously made of my nasal passages meant they couldn’t. So I went a few days on only water, but then I was able to start drinking my food. This was fine by me. I much preferred it
One femoral line in thigh, check.
One arterial line in sore arm, check.
One cannula in the back of the hand of the same arm, cannula not used, check.
One cannula in back of other hand, cannula not used, check.
Failed attempts and bruises at different points on my wrists, check
I’m sure at some later date I will think of other things, but this is all my brain gets to right now. It’s all I can touch at this moment. If you sing this post in the tune of ‘Ten Dual Commandments’ from Hamilton, I will not blame you.
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Sending so much love and support. Keep going. xxx
That headband does look pretty cute on you Jen, shame it’s not more comfortable! Love Love
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If I can’t get comfort, at least I can have style 💁🏻
Two thumbs-up to the dentists for recognising your needs & helping you out in that way 👍👍.
If they cut your scalp from ear-to-ear then I dread to think what kind of manipulations they were doing to you…
Also, when I saw no NG tube I thought “uh-oh, they didn’t give you a PEG did they?” – glad to see that you dodged that bullet at least!
You have suffered so much. But hopefully there is now an end in sight. Wonderful work by the dental team , and everyone else also. All my love, jkxxx
Thank you. In limbo at the moment but there will be movement again eventually. I’ve got the right people on the case. So grateful!