Monday 30 September 2019

Muddled Words and the Cerebellum

It's past 1.30 am and I am still awake mulling over today's frustrations.

I feel the amount I am saying the wrong words is getting worse. My husband reassures me otherwise, but my memory is so annoying I don't honestly know if it's the same or worsening  I know I am getting angry with myself each time it happens though.😐

Today my daughter went to get items out the still drying and hot dishwasher... I said to her to leave it 'as it's still cooking'. Her and my husband said 'dishwashers don't cook' to which I said 'I know but it's hot' and muttered 'I am fed up with saying the wrong words' 😥... My daughter then said 'Don't blame it on your op mum, as you've always been a bit stupid...'😳

I just started crying.

I know I have never been quick witted ever, and even 10 years or so ago a friend said I write far more eloquently than how I speak.  So it's not totally new...

But since surgery I definitely cannot reply easily to brief comments such as passing someone in a shop, give instructions easily, and I get muddled speech, with loads of wrong words, when trying to explain something (especially quickly) ... Since my surgery I have often said random words and had to start again in explaining, especially when I am tired.

But now I'm noticing it more... I don't know if it's as I am doing more, sleeping less (and so my brain is more tired), that my kids keep pointing it out, I am more able to realise I am saying things wrongly ... or I am getting worse... ?

I also wonder if fear of saying things wrong is actually making me stressed and therefore worse?

I know there were a few more instances today of getting wrong words but only a couple more of this 'swapping' of similar words. (Heating and cooking)

I also said this last week, as my mouth now says what it is thinking rather too easily...

Dave told me he saw the dog pee on my mint plants in the garden today. (I had just picked some mint for with our dinner)

The response in my head, and what I thought I said:
"I picked it from the top of the plant, he can't get his leg that high"
My actual response: (as witnessed by 3 of my family)
"I picked it from the top of the plant, he can't get his dick that high."

I can deal with the fact I say a rude word easily, but I can't deal with it as well when I was sure I said something else. How many other words am I getting wrong and not realising? 😕

Plus it still takes me days, even weeks or months, to remember to do less important tasks. I know I kept thinking I needed to book a dental check up for about 6 weeks before I actually remembered to call. It's taken me a week to remember to bring some bags upstairs to put items for the charity shop in.

As I was getting annoyed with myself this week, I again looked up Cerebellar Cognitive Affective Syndrome. (CCAS)

Why does no one seem to acknowledge this even exists, 
or I may be suffering with it? 

Yet it says:

"..the right side of the cerebellum will be responsible for language" 
"It has also been shown that lesions of the right cerebellum result in greater cognitive deficits." 

I had a 3cm area on the right side of my cerebellum removed. 😬😥

And others who had the same cerebellar tumours and surgery tell me they struggle in saying and doing things very similarly. I guess it's the cerebellums fine tuning that scientific studies talk about?

I also did the Cerebellar Cognitive Affective Syndrome test. My daughter read the questions to me, and whilst I realise we are only following the questions basically, I failed 4 of them. When it said failing 3 showed CCAS. 😟

Today I'm feeling like so much has been effected, 
that no one else even dares to acknowledge and talk about with me.

The only positive thing, is I have finally got my appointment for in November to see the Neuropsychologist ...

I hope this will help.🤞


Monday 23 September 2019

Autumn Equinox

I don't find this time of the year easy.
It's starting to get cold and I am so not ready for it.
I want spring to start again and give me chance to enjoy a decent summer.
Several more months, please!

Of being able to go outside and feel the healing power of the sun whenever I need it.
To have that 'extra room' to the house, the room that's full of nature.
Plants, birds, bees and butterflies.
To feel connected to life.
To feel connected to ME...

...but the sun is getting cold.
The wind even colder.
The leaves are falling.
It feels like everything is falling apart again.
Having to hibernate until the spring returns.

Life is on hold again.

Today the night is as long as the day.
Tomorrow we will have more dark than light.
I'm so not ready.

I am stubbornly refusing to wear my trainers round the park, and continue to wear my flip flops, even with cold toes.
Crunching through the leaves on the ground.
Wearing a t-shirt and body-warmer, as I just don't want to admit I need a coat.
Appreciating every ray from the sun.

Once we would have harvested our crops for the winter.
But barely anything has grown in my garden this year.

It seems like my life.

I feel I'm still needing to plant and grow, not to be held back by Winter.
The cold stopping so much.
I don't want to have to walk around with layers and fluffy jumpers.
I hate being bundled up.
Yet even then I'm always cold.
I hate the cold more.

So today I am struggling.

It's my son's birthday at the end of this month, but I know after that celebration the cold really hits.
I have three long months until December 21st when it's Solstice, the shortest day of the year.
And then another three until March, when I can finally feel some heat from the sun's rays again...
Part of me hibernates each year. 

I was born in Spring, 
I feel that's when life starts again.

After three and a half years, I finally feel like I am in control of my dizziness, my slightly wobbly balance and my head not feeling tight all the time. Enjoying the warmth.
Being able to exercise outside and feel healthier for the first time in years...
I am just about getting used to it.

But each winter since my surgery, I have felt my body stop improving - even get worse again.
The cold wind hurts my head.
The muscles go tight and pull.
The nerves feel the chill.
My head feels numb without even touching it.
I wobble more when I get cold.
My body contracted.
It feels healing stops.

Winter is tougher now than it ever was... 
...but I'll take it a day at a time. 

Tuesday 17 September 2019

What Do I Wish my Family and Friends Understood After I had Brain Surgery?

Being diagnosed with a brain tumour, only having one appointment my neurosugeon before surgery, not having any other information other than this meeting, yet being told I needed 'urgent' brain surgery and then having the operation brought forward as even more urgent... all within a month of finding out about I had a brain tumour. I had not had much time to register what was happening.

So when I left hospital (which was only 48 hours after the end of surgery) I was in shock.

I felt violated. 
Trying to work out 'why me'? 
Still terrified. 
Not quite believing it was over. 
Yet elated I had survived.

I felt extremely vulnerable and delicate. My head and neck felt so sore. I couldn’t lean on it, much less sleep comfortably, I needed propping up with pillows, but I could barely do it myself. I felt like a newborn. Everything felt slightly numb.

I couldn't cuddle my 9 year old son, I couldn't even have his weight on my shoulder as it hurt my head and neck so much. I desperately wanted to continue to mother him as before ... but I couldn't. I had to fix and put myself first. Not something that had happened since I started parenting.

I also had all three of my older kids taking qualifications (GCSE's, BTEC and a Degree) yet I could do nothing to support them. I knew I had to put me first. Anyone offering support for them was extremely appreciated.

Then there were the physical effects that I needed to get used to:

My vision was awful, everything was a bit blurry. Plus I felt my world was constantly spinning. I couldn't watch TV to relax as it made me nauseous, it was worse looking at a computer screen. I could manage to send a short text and that was it, I would have to stop and let the nausea subside.

After a week or so I was all but begging for the dizziness to stop, 
to be able to eat dinner and see the spoon go in a straight line to my mouth, not feel like I was eating on a fairground ride.

(I have written about the other side effects I had previously, please see The After Effects of Brain Surgery and Cerebellum Surgery Side Effects)

Household noises such as the washing machine were too much, even a games console whirring was too loud and constant. I couldn’t cope with too many people talking.

Lights also hurt, the light coming through Venetian blinds was in lines and felt like it was flashing! My brain couldn't handle any stimulation.

I spent ages with my eyes shut!

Doing anything was hard. Even walking to the toilet was tough. It hurt to move, I needed someone to walk with me.

I struggled to sit on the loo seat correctly, my body felt fuzzy and so I had to double check I was doing everything ok. Remembering to flush the loo, wash my hands and dry them seemed to be a lot to remember in order.

Trying not to wobble or trip over something, or even just navigate the corners and turning to shut the door.

Finding the right words was also hard, most of the time I could say what I felt relatively well (albeit a little slowly), but try and describe something or give instructions of any sort (where memory came into it) was awful. I knew the thoughts were in my head, I just had to access them and this wasn’t a fast response time.

I was terrified on feeling so ‘out of it’, especially when I got tired. Each time I needed to sleep I had to trust that I would be OK, and it was ‘just’ tiredness and not that I was getting ill or having a seizure or blacking out.

The first couple of nights after I came home, I made my husband just hold me as I kept dreaming of a horrid metal taste in my throat and the feeling that someone was putting a tube in it!

Waking up left me extremely groggy. It took a while for my brain to wake up, and even longer for my eyes to do the same.

I would often lie there with my eyes shut for a while after waking not even realising I hadn't opened them yet.

I wanted someone with me 24/7. To calm and reassure me when the pains were too much or I felt dizzy (I was so scared I would fall over or have a fit) … and also wanted someone to just listen.

Please just listen.
You cannot put it right or change things, 
but just listening and understanding helps SO much. 💜

It was great to see people visiting, but also, I couldn’t stay awake for too long. I needed a morning and afternoon nap (for an hour or so!) for months, if I didn’t then I felt awful and got really exhausted later.

For several days, even weeks, if I tried to do anything even as simple as ordering online shopping, going to an appointment to remove staples etc- it just wiped me out. Physically and mentally. Even months later going to one place a day was more than enough.

As I had barely been able to move off the sofa for months, my body strength and muscle mass was bad enough that even walking for a short distance was exhausting. I just had to build my strength up slowly. Very slowly!

Even months later I was still unable to think clearly, or for long:

 The brain fatigue lasts for not only for months, but years...

I finally feel I am seeing positive improvement three years after my surgery.

I am now able to stay awake for a full day and even go out for the day without having to 'pay for it' later with being extra fatigued.

Yet still, if I have got particularly tired or stressed, my brain starts to 'switch off' again.

I cannot find words, I stutter, I cannot think clearly or make decisions, and my balance and coordination goes with it.

I may act it... but... I am not drunk!!! 

Even though my surgery was in my cerebellum, it effected so many of even simple normal day to day tasks. I could barely read my own handwriting, and hardly anyone else could decipher it!

I struggled to help my son with 'school' work, I couldn't read things out loud correctly, I couldn't say them correctly either.

I felt like my brain was failing. 
I felt like a failure - to myself and my family.

And even three and a bit years later...probably the hardest thing to 'get over' is the fact that:


Monday 9 September 2019

My Tree

I love this tree.

My, now adult, children used to climb it when we moved here 19 years ago. It was their stopping point on our walk back home from nursery and then school. One of my sons got stopped by the local policeman for being too high up in its branches without supervision! 😲😂 Until the poor man saw me marching towards him (about to ask was he really telling a child off for climbing a tree) and he suddenly decided to leave...  I've realised over the years people tend not to argue with a redhead.😇😂

We first took our dog as a little puppy out of the house and he sat near this tree.

My youngest son is almost 13, yet still climbs this tree frequently and swings on the branches like a monkey. He is that child that sits in trees when he is angry!

Over the years we've often looked at the ladybird eggs and larva on it. How there are more ladybirds if there are greenfly on it too. Well I did - as they climb! 

I know my own grandad, who was born in 1923 in a house less than 100m from my door, used to walk up this very road (then a cart track with fields at the side), scrumping apples on his way to school.

My Nan, Grandad, Mum and Aunt used to live in a house almost opposite mine as young children, also walking to the same school as my older children did.

... was this tree here then?


Each day I walk the dog round our local park, use the outdoor gym when my body and the weather are up to it, and unless it's pouring with rain or blowing a gale I sit on the now almost fully broken branch at the trees side. Even when it's wet and I don't want to sit, most of the time I will still lean on or hold one of its branches for a few breaths.

I breathe in the tree. For almost a year (since I posted this - Even Trees Wobble)  I have now consciously sent it's balance and connection to the earth back into my body to help ground me. To stop and accept my wobbling.

Even when it's branches are moving the roots are firmly in the ground. Strong. What I need to feel in myself.

It helps.

I often lean my head back onto its trunk. Leaning on the horrid numb part of my skull that I cannot feel properly. It feels like the trunk is extending into my brain, down into my neck. The 'board' I feel in my head when I lean on it like this.

But as weird as it feels it also feels alive, that the tree is somehow reconnecting my head, my cut nerves.

Or that it doesn't matter. 

None of it matters in the scheme of things.


Tuesday 3 September 2019

Balance Beams

Almost every day I take my dog, Enzo, for a walk around the local park. Often I also use the outdoor gym there. More often when it's dry and sunny, and not very frequently in a wet winter.

Since I started using the gym in spring 2017 I have tried to use a balance beam most of the times I go there. After a few months I was able to walk it most times without falling off, so I started testing my balance by looking from side to side and up and down at various speeds and angles while I stand on it - trying not to fall off! (Sorry for the swearing if you have ever seen me there! 😬)

Sometimes I feel I am able to walk along it and turn quite well - as long as I keep looking down at where I am walking! Yet on other days even with looking at my feet, I struggle to walk along it without wobbling. Struggle to turn around, and cannot look up, or to the side, without falling off.

This difference has never seemed to link to anything obvious. Apart from I am not very good if I have just used the gym and my legs are weak!! 😂

The hardest part I find to cope with is that sometimes I am useless for a few days, or even weeks at a time. Then I start to worry if this is the first sign of another problem with my cerebellum... so I get stressed and worried about it, and then inevitably I start to wobble more! 😔

Once I have a few days of improvement then it reassures me that my brain is probably alright and it was one of those things, after all I did have a 3cm tumour removed that was embedded in my brain.

In my cerebellum - the part that controls balance. 

Before surgery I could not even put my heel to toe, so I remind myself how amazingly our bodies heal and the fact I can even stand on it at all is something to be proud of.

It's the same when I wear heels when I go out. My favourite boots are not that high, and I normally feel quite balanced in them, yet sometimes I can stagger and wobble as I walk. (Actually make that frequently! 😂)

Yet I accept this issue better. Maybe as it is most often only when I am tired, stressed, or carrying something. But also that when I was a teen I had my toes pinned, the tendons cut and so lost sensation from them. So I have never had great balance in heels since. Needing to wear boots as my ankles are very narrow never helped much either. So wobbling in heels is something I have done for many years! 😬 Although I do wonder how much my balance issues for many years were caused from my head after all?!

Anyway, when I went to Arundel Castle last week I realised that my balance was probably better than many people's. (see my previous blog about the steps!) I just need to be sensible as I know I can wobble if I turn quickly, or look up etc.

I also have had some Bowen Therapy recently (from Alison at and I wonder how much that has helped me in the fact it has realigned my body better? I have felt better in general since I went... 😊 I also had some treatment from Alison just after my surgery and I especially felt it  helped realign my neck where the muscles had been cut, as well as my body in general. It stopped my neck leaning to the left - even when I felt it was straight,! Plus it also helped with the dizziness and coordination. Maybe it has just helped my body heal again to another level?

So when I have used the balance beam the last few days I have felt better at it. I have managed to stand and turn looking around without falling off. 😊

No doubt I will wobble again and some point soon, but I will remind myself to not stress about it. 😬