Monday, 8 October 2018

The Alternative Guide for After Brain Surgery


You realise why they have a full length mirror opposite the toilet in hospital bathrooms. Simply as you cannot turn your head to look sideways to find the loo roll or look down at what you are wiping. Just use the mirror! 😂

If you are in any way sensitive please note that steroid tablets stop you sleeping, or in fact relaxing. Making you feel like, what I can only imagine, is overdosing on coffee spiked with amphetamines. So make the most of sleeping while you can immediately after the general anesthetic. It was the only occasion where I slept for more than 2 hours at a time for the whole week I was in hospital. As soon as I stopped taking the steroids, I was shattered.

In hospital (probably another lovely side effect of the steroids) you will hear every bleep or noise of all the various machines (and each person has at least one machine), the phone ringing, the nurses talking outside – just everything. Each bleep will be like an alarm clock going off and jolt you to your core every time. 😣 Like I said... you can't sleep!

Get some music and use earphones to stop yourself going insane. I had an iPod with various meditation, relaxation or healing albums, many of which I was already used to, so I could just listen and know my body was relaxing even if I couldn’t sleep. It blocked out the hospital noise as much as it distracted me with something I liked. I also had a variety of music, including a live album where I could pretend I was back at a concert and listening to the whole stadium singing alone (feeling happy is so healing in itself) and also some heavier songs for if anything kicked off on the ward that I wanted to block out. Seriously - my iPod was my number one must have - music saved my sanity! 💜

Ear plugs were far too much for me, as it amplified every bodily noise inside me (which wasn’t good when I was already hypersensitive from the steroids) plus they didn’t distract or block out the ward noises.

The day after surgery it felt like I had a tap dripping in my head… It’s almost like when your ear clicks, but inside your skull and it shakes you up on every level! Don’t worry it’s just your cerebrospinal fluid filling back up again. I did my version of craniosacral therapy – holding my hand on my sacrum area and visualising bringing the fluid down my spine and the universe healing me, which I am sure really helped. My sacrum started pounding under my hand as the clicking in my head reduced, then stopped. Although if you do it for too long you get a numb hand and if you tell your neurosurgeon what you are doing expect them to think you are just a little insane!😉

You feel like you have a bee buzzing inside your brain- in the area where the tumour was. Apparently this is ‘normal’ too.

Having a tube stuck down your throat for several hours really feels like you cannot swallow or cough fully after. Raw honey was so soothing, and don’t try and eat anything other than small pieces of soft food for a few days. Biting into a whole apple is not a good idea!

Arnica, have some Arnica homeopathic tablets… and take them every time you need a pain killer. In fact most of the time I felt they were better than the pain killers and also I didn’t have the horrid side effects of feeling ill and nauseous too. I don’t care if the nurses thought they were placebo… it’s the best placebo I’ve ever had! 😀

And while we are on Arnica … Arnica cream. Oh my! This was my addiction! Put it around the scar (not on it) and it felt like someone had just massaged my head, un-knotted the pain, cooled it and calmed me all at once. Every couple of hours I kept asking someone to apply some more 💜

They glue your hair away from the incisions. It’s not so bad on yourself – unless you look in the mirror or try a selfie! 😬 But looking at 5 other women in the ward all with their own variety of huge scars and mad stuck up glued hair is slightly disconcerting. They all look like they have been in some awful horror film and are still in prosthetic. The bruises many have on them also add to this look really well... 👀

Leaving hospital is surreal. It all looks different in the same way another country does when you first go there on holiday. You see signs on buildings, birds in trees and even beauty in Tooting! Make the most of it, it doesn’t last long!

The first few weeks at home after brain surgery I slept most nights without waking, plus also needed 2 decent naps a day minimum. I could sleep 11 or more hours a day for months after. Before surgery I used to wake up when my kids so much as walked to the toilet in the night, after they could have had a party in the room next door and I wouldn’t have heard! I often woke to find my whole family were up and showered and I never heard a thing or be told the dog barked for several minutes in the night, or the doorbell had rung. 😫 It’s also a great and very valid excuse for not answering the phone etc.

If you have surgery in your cerebellum, they cut your neck muscles. This hurts. Far more than anything else did. About day 10 the muscles started cramping up and I ended up taking paracetamol and codeine (after not having any pain killers since day 2) They didn’t really help much and I just felt spaced out and nauseous instead. The best thing was to get someone to press the muscles and lightly massage them as it stopped the insane cramping. When I moved position or got up to walk to the toilet my husband literally had to stand behind me as I walked continuing to press the muscle as hard as he could just to make it bearable. 😱

As the numbness and swelling in your head wear off, it is replaced by an itch you can’t scratch – inside your head! It feels like it is under your skull and no matter what you do, you can never itch it. It’s just like an itch under the bottom of your foot when you have thick shoes on and can’t touch it no matter how much you scratch around your shoe 😒… it can drive you insane! The best thing to do is either scratch your neck as it can ‘sometimes’ help relieve it a little (but you have to be careful not to do this too much and make your skin sore) or just sit on your hands. It goes off eventually!

You wish it was Halloween and you felt quite a bit better than you do - so you could actually go out. As you know you would win the best Halloween costume ever with real staples in your head. 😁

If you ever want to get rid of someone show them the photos of the staples in your head – they kind of start to freak out and go a little squeamish and leave soon after 😂 (Unless they are a nurse or doctor…well actually it works with some of them too...  😕)

You may feel like you are dreaming the whole experience of brain surgery as it doesn’t quite feel real. Unfortunately you aren’t, it’s just a weird dream like experience that continues for weeks.😬

But... the upside is. For a while after you get a sort of high... you survived brain surgery... what should have killed you... and you feel just a little bit proud 💪


finding the wood through the trees

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