Hello again everyone, I’m working backwards here to catch up on the last fourteen days so I can then blog my progress in real time. 

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So… the first 2 days after surgery, I couldn’t stay awake for long periods at a time. It was like being on morphine & think I possibly had some given to me before I came round for pain relief. That said, I must have had a fair bit of anaesthetic for 7 hours worth of surgery. Usually I’m wide awake afterwards so I found myself fighting against it this time & losing big time! 😊

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I’d been told before I had the op that I was only allowed ONE paracetamol. I could have had better pain relief, and I have had a wide variety & a lot of them in the past, luckily I don’t take regular medication anymore, other than my Botox injections: that’s in my neck for Dystonia, not in my face 😉 and paracetamol sometimes. Over the years, I’ve had various side effects which means I now struggle after surgery to have anything other than morphine & or paracetamol. It was a new one on me that because of my body weight, I could only have one not two, which I’ve had for years at home & in hospital! I was intrigued to see how that was going to pan out!

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The pain wasn’t too bad to begin with in comparison to my other surgeries. My stomach was the worst, my head was just tight mainly but hurt if I laughed or pulled an expression. It’s amazing how much of your head & scalp is involved when you make an expression. It was more discomfort mostly, with the odd painful feeling but this did worsen through the night. It was hard to sleep as the wires down the left side back of my head were too painful to sleep on. I could only sleep on my right side. My stomach was more like an actual injury or surgical procedure had been performed. This was particularly painful when moving. I use my stomach muscles more than most people when moving as my hands & wrists aren’t really fit for purpose 😜. The one paracetamol as I’d thought, wasn’t really touching the sides, so I was given some oramorph. (Oral morphine) This isn’t really effective for me from past experience but takes a tiny bit of the edge off! The morphine that works for me is the hardcore injection version but I hate how it makes you sleep. Makes me feel out of control, something I don’t like! I didn’t want the hard stuff this time so I persevered as long as I could. I asked eventually if I could try the lowest dose of codeine. The last time I tried it I went green & had a funny turn so haven’t had it since, but wondered whether I should try again.

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I was given one co codamol, which I broke into four pieces and was going to try one quarter at a time  as a tester! Just as I put one of the quarters in my mouth the doctors came round & I spat it back out. I can’t believe how scared I’ve become of tablets. I used to have cocktails of them. I asked if I could please just have two paracetamols as I knew I’d be fine with them. It was agreed I could as I explained it would be short term. This proved to be enough & after a day of having them every 4 hours & getting them into my system,  I was a lot more comfortable so I continued with them.

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My head: It looks amazing! The second wound site is further across, you can just see the blue stitch. I thought I was going to have two big bald patches, so bonus!!!



My stomach- worried & scared how this will look long term but staying optimistic I WILL get my shape back! 


Day three, Friday 3rd Feb- two days after surgery:

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 Being turned on… hmmm not quite as it sounds!!!

I was moved to a side room today which was amazing. Although I’d met two lovely people, one of which I have continued to be in touch with. I could not have coped any more so it was a blessing in disguise. No disrespect to anyone but for what ever reason, it was not peaceful through the night to say the least! I was a little apprehensive of being alone though.

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I made my room my own & became the talk of the ward for ‘being so healthy!’ I want to heal as quickly as possible so there’s only one thing for that. Healing foods! This is tricky when you have to eat the main meals provided, there was nothing offered that I would have at home, well I would, but not the way it was made here. I’m not being ungrateful & it was tasty food as hospitals go, but I know it wasn’t ‘clean’ so would be processed and contain additives/preservatives & all the hidden nasties I like to steer clear of 80% of the time. Not to mention I had my arm twisted to eat a couple of puddings 😉. My mum brought me the odd M&S quinoa pots when she could and  I had my stash of goodness which I had for breakfast and meant I could snack well!

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My shrine to wellness:


My battery was due to be turned on today. I have to say, me being the freakish me I am, I was apprehensive. I wondered what might happen to me… maybe I would start having some kind of fit, maybe my head would explode or fall off… who knows! I’d asked what could happen, the answer was ‘anything.’ My surgeon was joking but still, I was scared. Part of my brain was now wired to a battery in my stomach. So signals would be sent to do certain things, hopefully good ones i.e. turning off the culprit muscles, but some side effects can happen which can be a bit weird e.g. Double vision, tingling in my hands, speech problems etc… oh shit/sugar 😣😇. For my specific Dystonia, (cervical; which has nothing to do with the cervix) this is just the start of my journey. It can take up to a year to get the ‘frequency’ just right to feel relief without side effects. So this has to be done very gradual hence the time scale!

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All went ok. I felt very strange, bit slow like a robot, relief from symptoms immediately but only short term as is natural, but that was it. Felt ‘normal’ again after a few minutes. I can convince myself I’m feeling weird very easily so not sure if it was me or the tuning! I’m hyper sensitive to feelings/sensations but also aware that I’m easily scared & a little paranoid too!

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Saturday 4th- My boyfriend was coming to see me today. I had hoped I could wash my hair as it was gross. Literally matted with blood! It was soooo crispy. Nice! No such luck though. Day three was wash your hair day, but in surgical stuff, not shampoo & conditioner! This stuff seriously strips your hair of everything! It’s what you use before surgery too. Ah well. Let’s put him to the test! I mustered up the energy & put my makeup on instead so felt better after that. We had a lovely time, having my own room was just perfect. We watched a film & gently snuggled on my bed. Perfect! He lives in London so the long distance thing is hard work at times like this.

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Sunday was hair wash day. Yaaay! I was so tired though. Found it difficult to wake up & come round. I knew I needed to be up & showered & wash my hair. Although I couldn’t wait I just couldn’t get started today & Adam (My boyfriend) was coming back to see me. I eventually mustered up some energy to go for it. It was a nightmare. My head was still sore so I couldn’t rub it in properly.  It’s not proper shampoo so hard to get any kind of lather. I’m not really squeamish, but it was like turning on a tap of blood  & you could smell it with the heat from the shower (sorry). The consistency of the wash is not much thicker than water so I just poured it all over me. It had to last another two washes too but was just going everywhere. I was definitely feeling emotional & frustrated.

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When back in my room, I sat with what I can only describe as a dripping wet birds nest! I’d taken a wide tooth comb & was trying to gently comb my ‘hair’. It really was impossible. My head hurt & was just a mound of dreadlock type knots. I couldn’t help but cry! God knows what they did to me in theatre. The staff caught me upset & came to my aid. Two of them tried to help but agreed I was too sore to do anything with it yet. I managed to brush around the knots & dry little sections of hair. I got back in to bed feeling beaten & went back to sleep feeling sorry for myself! When Adam turned up, I was still asleep, he must have thought blimey, what a difference to the day before. He was lovely & tried to wash my hair again over the sink & brush it for me. It was no good but it made me feel better that he tried & we did make a little progress & sections we dried looked normal.

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The knotted mess-doesn’t look that bad on the pic

After my mini melt down & doing a good job of making my hair look ok somehow! 




Monday 5th Feb:

 Home time 👌🏻🏡 

As always when I leave hospital I’m so relieved to be going, but a little apprehensive. I do feel safe in hospital but I don’t really want to be there. I was ready for my own bed and pillows. The hospital ones were ridiculous. I don’t even know how you could call them pillows. With flat pillows & a lumpy head it wasn’t a good combination. But the bed lifted up so I was moving the bed up & down throughout the night to relieve the pressure off the back of my head. I didn’t have this snazzy feature at home but thought my memory foam pillows would be a great substitute! 😜

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Me leaving: makeup is just wonderful! 


I have to say the staff were amazing. Really lovely people. Everyone who I came in to contact with seemed to genuinely care. I felt very grateful & thanked the nurses and surgeons for doing a great job!

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My next blog will bring us up to real time which will mean shorter blogs… I hope! Think there’s enough here for now. Told you I was bad at keeping things short. Till next time. Thank you for reading.

Love Rachel x

 

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