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 💪

Self Healing

 

Today someone asked me on my brain tumour Facebook group what I meant by self-healing. I guess it’s a strange couple of words and an even odder one for many to actually apply.

For so many people it seems like they are not able to listen to themselves, listen to their body- what THEY want or need to do. They have been told as kids to not cry - ‘don’t be a baby’, to eat your greens - as they are 'good for you', go to bed by 9pm - like behaved children do, that you ‘have' to go to school - follow the rules and don’t misbehave, and constantly reminded that ‘we all have to do things we don’t enjoy’.

Then as adults it all gets compounded when you can only take days off work if you are sick or use your holiday days, and you have to be on time or you don’t keep your job - no matter what is going on in your life.

We are told to take paracetamol for a backache, to block whatever the cause is and keep going, it doesn’t matter if there is a physical reason that your back is struggling, or a mental one that is telling you another reason.

Whatever it is instead we are supposed to ‘toughen up’, ‘ignore it’ or ‘plough through it’… if you stop you are weak, lazy and probably letting people down.

Self ‘anything’ is not encouraged in society… you cannot miss a certain topic in school just as you hate it, even if you would happily do double of another topic you love instead.

You are made to get out of bed at a certain time, even if your body is still tired and will not be able to perform at its best in any way. Another hour asleep so you would be on top of your game is not permitted.

You are not supposed to stay at home if you don’t feel well- why else would schools give attendance awards to those that come in every day? (forgetting the fact they just spread a cold to half the class!) or work limits your ‘sick days’ so you won’t get paid.

So instead of listening to your body, we are encouraged to ‘take something to help it’ which is not healing the problem (no one is paracetamol deficient!) – instead it’s just covering the symptoms, covering ‘you’.

I could go on for ages about home education instead of schooling. I took my two youngest children out of school, when the schools’ rules and targets became more important than the child and they started to treat them worse than a prison would be able to treat a prisoner… (and no I’m not joking 😠) Or the whole capitalist society we live in and how wrong it is on so many levels…

I think many people also see their work and career as part of them, it defines them- after all society all but grades us by it (a housewife has no ranking and a brain surgeon is at the top!) 

So when someone cannot continue with their work (be it for weeks or years) for whatever reason, many people are in a void of not knowing who they are. Their life is on ‘hold’ until they are better and can go back to doing what they did before, or something equally meaningful in societies eyes.

It’s why when some people retire they get ill, or the kids leave the nest and the parents relationship breaks down. What are they now? Nothing!

It doesn't matter if you are unemployed, long term sick, unable to work, a housewife, retired or just not seeking work. They are always on the bottom of the list of 'what profession do you have' ... silently saying you are the lowest rank in society. I despise this.

But I will say what I mean by self-healing …

I just mean asking yourself what YOU need today, or even this minute. 


It may be to go and sit in the garden, to feel the sun on your face or tend to some plants (sitting down if you have to), to get a notebook and write down your feelings- release all the anger or fear on paper, to do a puzzle, to sit and drink a tea you enjoy slowly, to go back to sleep, to find a club/class/group/cafe to go to, make a meal you love, eat out, take a walk, play music, watch comedy films, do or start a hobby you've always wanted to... the list goes on and what will be right for one will be torture for another- they key is to do what you feel is good for you.

Also to be able to love and accept yourself just as you are - today, not thinking constantly what you think you should be, or what society wants you to be. 

I have red hair... it has slightly changed intensity over the years, and I now have a very few white hairs (mainly near my scars?!) ..but its still red. If, and when, it goes white, then so be it. If I chose to dye it, I may look different to others, but my hair will still be red (or white!). I could hate it and spend my life dying it every couple of weeks, or I can just embrace it's colour and texture and save myself a fortune and a lot of stress!

After all it's me and I don't see the need to cover 'me' up...

So, if you are recovering from illness, then let yourself rest and be weaker than normal. Accept your body as it is. Getting angry or frustrated that you cannot do something is not going to suddenly change it so that you can. Of course you can still have goals to push yourself another step - you don't have to accept that you will never change, just know that today you are still on that way to changing.

If instead you see your life as just doing what your body tells you, then it’s not so much on hold... you are just doing differently. Being in the moment. Looking after yourself for when you are either able to work again or find something different that you enjoy.

Problem is when you start listening to yourself... your world changes and you can never go back to blocking your feelings or emotions again.

A close up photo of my hair in sunlight.

                  

Changing Email - I can't cope or decide

My husband is changing my email address, as we have realised it is far cheaper to use another internet service provider, telephone package etc. I will say when he signed up to change ISP he thought I could keep my email address... but he now thinks that we have to pay to keep it.🙄

So I am going to need to get a new email using my website address... (and possibly use another computer just to add to my confusion -as my laptop is getting a bit old) but it feels I have SO many people to contact, contact groups to set up, businesses I use, shopping sites, affiliate links, book promotion contacts and emails, health ombudsman etc, plus all the important contacts like Dr's who I need to notify... 

I started trying to change them today, going through my new emails and many of them you cannot easily change email. Some you can change every other piece of contact information, but have to email them individually to change the email address😕

Some I have forgotten the password for (and as I need to log on to change things, I will need to do this while the old email is still active or I cannot receive the email password reminder)

Some my kids are already using with my 'new' address so we cannot have two accounts on the same email.... (as I had the new email set up a while back - before I got ill - and so when they needed an individual email as I wasn't using it, I let them use this email instead ...) So I need to change theirs or get yet another email name from my website... 😒

 ...and I want to scream.... 

My brain cannot cope with it. I don't understand if my email details are stored in outlook or BT, and if they will still be here once the email address goes. I can't seem to 'get my head' around any of it. 

Just like anything I do that is different to my usual routine. I can update my website, but unless I have done it recently, I forget how to upload it every damn time - as there are a certain number of actions needing to be done and I never remember them all... the frustration is enormous. 

It got so bad earlier that I couldn't even work out how to save my email contacts in the contacts folder...
 

It's so annoying when you cannot explain yourself, don't understand what will go and what will stay, have forgotten most of my passwords making the job ten times harder, but have loads of info I really don't want to lose and yet need to remember what it is! 

I know my husband thinks it's as simple as me asking how to write an email and totally obvious- after all he does this sort of thing every day. I'm sure he thinks I am being stupid and hysterical...

But my brain definitely feels broken tonight 😭

And just as I was managing to get some things from our clear out finally on eBay (the having to take pictures, word things correctly and weigh items I have been procrastinating over for a few weeks since I had the house tidy and was knackered after..) and not have them sitting in our front room... now I  have been told I need to sort my email ASAP!!! 😭

So I'm going to bed now, as I just cannot think straight. Will have to look at it again tomorrow hopefully with a less fatigued brain... x

 

 

Travellers and the Power of the Media

This is my first ‘non brain tumour’ post I have written. But I feel my experience of having major brain surgery and all the people who could have judged me (but didn’t!) and all those who still judge me now, has made my view on judgement even stronger than before.

A couple of weeks ago on a Friday we had a group of about 60 caravans turn up at our local recreation ground. I was initially alerted to this on a local Facebook group despite the gates of the park only being about 200m from my front door. The posts were all along the lines that “the p***** have arrived” and how they caused ‘serious destruction’ ...by breaking a rotten signpost and opening a (possibly unlocked?) gate! 😐

The hate and ethnic racism in the community shocked me. 

We live in surburbia in Surrey – the posh part of England (although I am not in this league by any means) and I know many around here live in their own little bubbles protected by money away from the reality of life that many of us face. But the instant disgust, anger and fear against these travellers even daring to use ‘our’ land was palpable.

Anyway, me being me, I still walked my dog round the park - around the outside of the caravans, still used the outdoor gym and even went and said hello to one of the women there. I only saw one other local resident in the park in the two days, everyone else had disappeared.

But I had no trouble, saw nothing too disgusting, just rubbish (most of which was in bags and that could easily be cleaned within 5 minutes by all these people if they wanted to) and mud where the water tap had been left on (by who?) next to the cricket pitch.

Online I heard that other ‘bad’ incidents had happened, but I did not see them. Was I just lucky not witnessing any problems? Or was it as I didn’t judge them, and smiled as I walked past that they didn’t judge or attack me either? I hope it’s the latter.

But online the hate and saying that these people are ‘all’ awful and “they should be thrown in the North Sea” etc is seemingly more than just racism that has gone on for centuries, much of which has improved, but is the same as any ‘target’ our government and media doesn’t want us to like. The media is like this now, just in the same way it has been throughout history when they wanted one group to hate another and go to war… 😠

So why don’t the elite and media want travellers?

My thoughts are this:

• They are not ‘controlled’. They are not bound by having to pay their mortgage or rent and so cannot lose it all if they upset the status quo too much and revolt.

• Therefore they are ‘dangerous’. Travellers could survive far better than most of us could if people revolted over the atrocities committed by our governments.

• They are off grid. So are not as tied by contracts, smart meters, addresses. They are not paying money for services every month. They are not tracked as easily - except by vehicle or mobile phone.

• They believe they can own the land by being the sole users of it for several years, without now paying rent to anyone. Totally against our country’s view that someone owns everything- that they can buy land if they have enough money (even if they have never set foot or used that land). That a tiny amount of land in popular areas is worth millions- just for land. So owing it just by using it is not a very popular view in our consumerist society!

So I wonder how much of this hate and racism is allowed to continue, as well as temporary transit sites are removed, insisting travellers 'have' to travel each year, just as it’s a good plan not to encourage more people to become travellers of any type, and to try and encourage those that do travel now into houses? 🤔

Do the people that run this country want us all tied down, needing to pay our mortgage/rent, council tax and bills, kept in work they hate for fear of losing it all? 

Where they dare not do anything about things that the Government or authority do that they don't agree with as they cannot risk losing the investment of their property, or lifestyle?

I believe there is far more to this 'hate' of gypsies or travellers than we are told.

But since my surgery, I try not to judge people. We have no idea from a look, comment or simple action if that person is being hateful on purpose, has never been shown or treated another way or is nothing like we have been ‘taught’ they will be. I have not lived their life to judge them, or even listened to their story...  Just as I ask you to not judge them (or me) either… maybe you would think and act differently if you had?

Struggle, and ‘Which wolf will I feed’?

I read this quote today and I am ‘struggling’ with it…

 “Don’t let your struggle become your reality”

 

Struggling with it!!!🤣

Yes it very much feels life is a struggle at the moment. Not only with my after brain tumour symptoms, but my very much niggling (ache to sending sharp pains into my hips) backache, tiredness from waking up before 8 am (as we have builders refitting our kitchen and that’s when they arrive), finances, kids things…

I know regarding my tumour I have been feeling this for a while. I purposely stopped following several brain tumour groups as a few weeks ago I realised I needed to separate myself from them for a while, focus on me, focus on moving on. 

I am always going to be a brain tumour survivor, but I don’t want it to define me, there are other parts of me too, some of them feeling very much hidden right now.

For the previous twenty odd years my life focused on my kids. I haven’t had a ‘proper’ job since I was a teen, and although have been working part time self-employed with Dave I didn’t actually get paid as I helped him. The money he got just went into our household finances. It might sound odd to many but I actually found part of me again when I was forced to listen to my body after the brain surgery!

So although part of this time has been extremely healing and positive, but I don’t want it as my identity either. 

‘The woman who had the brain tumour.’

I’d like it to be the artist – but I am very much accepting that I cannot do what I once did. It would be a struggle, yes. So maybe not much of a better identity?- a struggling artist!

So I am pondering this in my head. Writing my thoughts down. Listening for answers. The thought I need to find ‘the opposite of struggle’ and have that as my identity.

This quote pops into my head…

 … and once again I know I have to change the ‘wolf’ I listen to.

Instead of the struggle I need the positivity, the overcoming, the presence, the acceptance, the helping, the healing, the joy, the loving. 

I need to feed the positive side.

💖