Accepting Myself after Brain Surgery

This is not a post to brag about me, as I know I am far from perfect.

But this week I have had 3 people tell me how they love me, how amazing I am, and they just wanted me to know and realise this fact 💜 and then just gave me a hug right where I stood 💜 Plus a few other people who have spontaneously hugged me!

 

It has so helped me feel better about myself 💜

 

As ... sometimes it's hard to keep being 'you' in a world that wants you to be something different, a world that judges you on what you look like, every mistake you make and where what you possess equals how admired you are.

 

 

On lots of these I don't have much. 

Up until a couple of months ago I was starting to become totally depressed with 'me'.

The fact I still say wrong words so often after my brain surgery, the fact I'm so often fatigued, I have no money, barely any monetary possessions, no qualifications, many of the skills I had went a bit AWOL along with my tumour surgery & I realised I certainly had PTSD from it... plus I have certainly been feeling and looking my age. 🤔

A couple of months ago I realised I needed to let go of the 'shoulds', and to accept my 'faults' as they are.


Accept the 'new me'.

I would have been dead if it wasn't for an amazing team, led by Mr Jones who took my tumour out. They gave me another chance.

I realised again something that I knew inside but had been buried in the changes in my life ...

So what if I sometimes get the word wrong, 

struggle with feeling shattered, worthless or don't live up to 'normal'. 

So what if I don't look 20 any more, I'm fucking lucky to still be here. 

Heck I was born with red hair 

... I was born to be 'me' 

...to stand out and be a little different. 

I've always had a bit of rebel in me, 

so why am I taming and changing myself now? 

I went through the hell of surviving a brain tumour, the total and utter physical and mental exhaustion, the terror, the having to accept, having to trust... The comments and judgements that still happen when I'm tired or my brain and body have not yet woken. Their judgements, when no one knows anything about me, nor my life... 

The fully letting go of how others see me, after all how can you do anything else when you have been seen at your worst for months, where you spent most the time crying, feeling awful and you cannot even see well enough to put make up on if you wanted. 😑 Not that at the time I cared one bit. It was the last thing on my mind!  You totally lose the illusion that it matters.


Who wants to be a cloned, fake Barbie doll anyway? 
I like being REAL...

I never wanted to me anyone else but me,
so why was I getting so stressed with what I couldn't do now? 

I let myself off the hook. Stopped judging me. Stopped getting upset with my struggles and focusing on my positives and improvements instead. 

During the months of brain surgery recovery, where it took so long to wake myself up each morning and even longer to open my eyes. Part of me stopped judging with my eyes, and instead feeling with my heart. I needed to keep 'seeing' things that way...

Do I actually give a shit if I have wrinkles or an odd white hair? No, as if I shut my eyes I don't see that, I feel my soul. 

I have learnt so many lessons during the past few years...  Of what really matters.

After surgery I had been hit with the realisation that I had spent years, decades, worrying over so many issues, but how many had actually come true? Probably less than a handful!

But had a ever worried about getting a brain tumour? Not for more than about a minute! Did I get one anyway? 🤔🙄 And if I had thought about it, what would worrying about it have actually helped... ? Absolutely nothing. Just made me feel worse for far longer.

But for several months this realisation went again, disappearing with the daily struggles, the why's and the feelings of stuckness. 

I know I could easily worry about so much just from my head symptoms alone, and can easily think is it my tumour returning. However I had been talking to the lovely Ivana who reminded me how my thoughts create my experience. 

I could either see my half numb head and it's increasingly itchy or sore scalp sensations as a sign of a problem or that, instead, my nerves and muscles that were cut in surgery might be growing back and healing themselves? Sensations returning. Yes it might be that they are very weird at the moment, but which of these thoughts will make me feel better? 🤔

I also fully realised I'm an empath. I feel others emotions (the strange sensations are very often not my own) and their pain that I often don't think they fully realise. I am someone who will happily hug another person in this understanding.

It's fine for me to do what I need to reset myself. 

To be me. 

The full unabridged version of me.

With that... My mood nearly changed overnight! 😁💜

And my happiness, and hug levels, have rapidly increased  💜




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Words - Do You Think or Feel Them?

As you may have heard me say, I go to my husband's (and son's) gigs at local pubs and clubs most weekends. I often sit alone, and often end up singing to myself!😁

Yet many a time I have realised I only remember some of the lyrics, and I am a few seconds behind with the words I do know, like I have to hear them to remember them. 😬

It annoys and upsets me.

I get frustrated with myself and my slow brain.

As does any situation where I cannot find the words for what I want to say, when I want to say them. The more I try and think, getting frustrated that I cannot remember, the more I seem to not be able to say things easily...

If I am explaining something when I have time and feel calm - it's fine. If someone is rushing, I feel I need to give a quick response, or I am feeling stressed - I might as well just point to things, as it would probably be more effective!

I say "It's in the kitchen", when I am standing in that room and mean the lounge. Or sometimes even contradict myself and then add "No, no, the lounge, I mean the kitchen, no, the lounge, I mean the lounge, on the sofa." 😬

Or if I am wanting to say the table, but am looking at the sofa I just say the object I am looking at... or it can be what I am reading, or thinking ... Yes I have said a few rather awkward things. 😬 Like this incident I posted on my Facebook page a couple of months ago:

"Dave tells me he saw the dog pee on my mint plants in the garden today (I had just picked some mint for 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" 😳😬😂

It's like my brain is simply not fully awake, getting stressed and then randomly choosing a word from the multiple choice list in my head!

Anyway, back to the singing...

Last night I had to put on my music quite loud to drown out the sound of the fireworks for my rather anxious Collie, and as I was alone with loud music I decided to go for some sing along rock to add to my playlist, much of them sentimental songs from my childhood or when I was a teen back in the early 90s.

At the start I was trying to remember the words, as I felt it would help me just by singing them... (some of the songs I had just found in playlists on Spotify and so I hadn't heard them more than a couple of times on the radio in decades) and yet the more I tried to think what the words were, the more I was a few seconds late in singing them, if I remembered the words at all.

 Then I just gave up and tried to 'feel' the words instead of 'think' them ...  and suddenly I remembered  lyrics from songs that I hadn't heard for 20 or 30 years.

Somehow as the next line appeared it just was there in my conscience, if I stopped 'trying' to find it I 'just knew'...

I had a great hour or so singing along to old Fleetwood Mac, Gerry Rafferty and Rolling Stones, although I'm not so sure if the dog did.  😂



I guess it's all but the same as when someone asks you the name of another person and you just go blank, and the more you think about it the more you just cannot remember. But as soon as you say "I can't remember" and look away and then look back at the person you can just instantly say their name without thinking!

Plus I know that since my brain surgery I also do a similar thing with even quite common words, whether I am writing them down or saying them. It takes a while for the word to appear in my head and I have to either think of all similar words that are close in describing it or shut up and just wait for it to appear.



This was also a clearer example of a recent realisation I had when I was talking to a friend. She was someone who I felt comfortable with and able to express 'me' without having to worry how I sounded or what she would think of, or how she would judge me. We had chatted for about an hour when I suddenly realised that not once did I feel frustrated or stuck for a word. Yes sometimes, I guess, I was trying to discuss an emotion and it took a few words to get to the root of the feeling, but generally as my conversation was about my thoughts and feelings and not superficial things ...

I just knew the words ... as they were 'me'!

So just like feeling the music, I am planning to slow myself down and 'feel' answers rather than having to 'think' them...

I'll keep you posted. 💜

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No One There...

A while back I was sitting in the car listening to the radio when an advert started, it was from the Metropolitan Police saying "If you are ever the victim of a car theft or break in then you can report it online"

I double checked with my husband what they had said.

"So they seriously think it's acceptable to have someone break in your house, steal your items and then you email them?!"

What happened to times when a local police officer came round ASAP, looked for finger prints if they thought it would help and seemingly tried to get a resolution on the case. Find the culprit and prosecute them.

Now you may have even seen the person who you think may have been involved, know some of their details of where they were going (with YOUR stolen items) yet you email them instead?!

I can only imagine how awful and neglected you feel as you don't even have a police officer listening - someone you feel 'may' be able to do something about it. Get your items back, some justice and stop them doing the same to others in the future...

Yet now, for whatever reason, it seems like they don't care. 
The people you thought would help 
don't do more than take your details.

But imagine you have details of the burglar, they spoke to you beforehand. You had trusted them to do a job at your house. You told them your concerns about the valuable items you had, you had even written it down to clarify it. While there they said things that showed they realised how valuable your items were but they said they had secured them.  That on a later occasion you even saw them carrying items from your house to their car, not knowing what they were...

But when you tell this to the police and they question the burglar, and give you their response - that they never said these words, that you were fine with them taking the items, that the incidents you and a friend both saw and heard didn't happen.

Then to make it worse, as they are a respected member of the community their word is taken over yours. How can you prove what you said and what they told you? You know they said things that would clearly incriminate them, but no one is listening.

 

They even lied about some things you know they didn't do or say but you have no proof.

 

Why would you video a conversation you had before you knew there was a problem?

You report it to the police and while they take your information, you get no support. No help in writing up your side of the story or checking they have details they need, you have to find your own witnesses, no help from a lawyer, nothing. But you still produce all the evidence you can find. Adding why you feel they are saying what they are now, and not what they did. Saying that you struggled for months after this incident, replaying it in your mind, knowing how much their actions hurt you. What they stole. How much you lost. You are still in shock from the incident, others have agreed their actions hurt you physically and emotionally, the lies just rubbing salt in the wounds.

Then, eventually, your case comes to court, and you have every hope that any judge who reads your info will do it justice. You don't want them locked up, just held accountable for what they did. Say sorry to you in person. Pay you back for what they stole and the direct expense you encountered from their actions. Maybe a contribution to your struggle and tears. But more importantly, to be fully held accountable, so it won't happen to anyone else.

You have faith that the 'truth will out' but after you give your evidence, your case is held in secret. 

You were alone, yet they had friends, family and support of others as they are a respected person. They also have both experience in knowing what to say and a legal team to advise them. Plus they are able to respond to each of your concerns and get the final say on what happened. You were never allowed to question them or hear any of what was said.

So after all this you get told that a small one of their actions was wrong...

... they shouldn't have shut the door in your face after they stole from you! 

But everything else they did was acceptable as they 'didn't mean to', and they are normally a respectable and helpful citizen. 

They didn't think the items they stole were yours or would hurt you. Their lies were believed (after all you cannot prove otherwise) and so they were just told to get their boss to say sorry.

Their boss can't even be bothered to sign the letter he supposedly wrote.

You feel sick, angry, upset, disgusted, violated, hurt 

and completely worthless. 

Your word was nothing. 

You are nothing and they don't care. 

No one cares.

But you still believe it was an accident on the judges part. Maybe you didn't explain it correctly? So you spend weeks writing your points again for an appeal, explaining how it happened. It takes months for a second secret hearing. 11 months in fact.

When you do finally get a reply they tell you that they haven't even read it as you didn't supply new evidence. But you did. YOUR evidence. It doesn't count.

Then you realise that they took so long with the case it is beyond the time limit for a private prosecution (even if you had the money.) You feel disgusted, unfairly treated and so angry. You know they are continuing working and none of their other customers know they steal... 

... That's how it is dealing with the Health Ombudsman. 

A total farce.



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It's a LONG Recovery...

It is now almost 3.5 years since my surgery to remove the tumour, yet I only just feel I am getting my health back.

I admit I have had for years a bit of an exercise phobia as well as health anxiety which had stopped me doing what I thought was 'too much' for many years. Then about 10 years ago I was diagnosed with chronic fatigue. Not really any answer or what to do about it, but it somewhat helped to have a label as a way of explaining to others. 

It never felt right though.

So in 2014-15 when I was really struggling with my health and energy and could barely manage more than basic tasks, it just seemed I was getting worse. I limited myself to one task a day. If I went shopping I didn't do it on a day I also took my son out. Everything was planned so I didn't run out of energy.

In 2015, after a meltdown, I decided not to help my husband with his self employed business as I just couldn't manage it all. Not that I was doing a lot to start with. 

That year gradually got worse. If I did too much I'd need to rest for a day or so after. Then gradually the feeling I was 'not quite right' started, quickly changing in 2016 into feeling a bit wobbly and off balance, then into feeling downright drunk (Even though I am teetotal) Not to mention the strange shooting pains in my neck, going into my head - like someone flicking an elastic band at me ...

By January 2016 I was almost sofa bound. I had been told by doctors, physiotherapists and osteopaths that I needed to rest my neck, that this should stop my dizziness. So as the headaches started I just stayed there more, to the point that some days I could barely get out of bed from the pain. Needing to have a routine just to be able to sit down without it feeling like my head would explode. 

Yet the doctors still didn't think there was anything seriously wrong. Although I did get referred as non urgent to a neurologist for in another few weeks time.

By the time we gave up with the NHS and I had my private MRI, I weighed 8 stone 7. I felt like I was too skinny and ill. This was the day I was told about my tumour. The chronic fatigue finally made sense! 

Just over 2 weeks later at my pre op appointment I weighed 7st 13. 

I was wasting away. 

I was told to fatten myself up. But as I didn't have much appetite I just ate loads of chocolate!  And I did get to a pound or so over 8 stone the day before my op. 

This picture was taken on the 15th May, 

the day before I went to hospital. 

Even though I only spent 4 nights in hospital in total (2 before and 2 after surgery) by the time I came home my legs were so thin that when I looked at them my shinbone was sticking out as the rest of my leg fell away from the bone. It was horrid.

I had so little energy.

It took me over 3 months to be able to walk a short lap around the park with the dog again. I couldn't even manage to carry a washing basket upstairs. When we went to the beach it was as much as I could do to walk through the sand to get to the sea. I was shattered after, needing to sleep.

For the rest of the year I still had to rest after I did anything, even just walking the dog. 

However in March 2017 I decided I needed to challenge myself to get fitter, plus also challenge my belief that I couldn't exercise. So I tentatively started to go in the outside gym as I finished the dog walk. I knew I looked pathetic so I tried to go there only when no-one else was there. Thankfully it often was!

 

One exercise machine I could barely even lift, as it hurt my neck so much. Well I managed to lift two! 😂 Three of the others I could only do between 10-15 repetitions and I was shattered, although I did manage 30 on the leg press! I could only manage this and then had to come back home to rest, feeling my brain was shattered as well as my body.

Anyway ... Despite wondering why I kept it up, hoping that at some point I would get the benefit of being fitter- and not just far more exhausted, I continued with using it whenever I could. Yes I missed whole weeks at a time, but even in the winter I tried by putting a plastic bag over the seats so I could use them when they were wet. 

The fact my collie dog Enzo is a creature of habit and walked into the gates of the gym each day without asking probably accounts for most of the reason I went! 😬

Anyway... This summer I have finally noticed the positive side effects. 😊 

I felt muscles in my arms!😂

Not only that I no longer get so shattered after doing almost anything - my body is fitter from the exercise and no longer constantly reducing my limited reserves. 

To some what I do is still useless and laughable, but I know how much better I am, and where I started from. I am now able to do 100 repetitions of each of the 3 arm exercises, and the one I could only 2 of I can now manage 20. 😁 A 10x increase is not bad! Plus I have almost a similar % increase with being able to use the various other weights, 'twisting' waist toner or my time and speed on the cycle machine.

I have for the first time in my life muscles that I can feel, and almost see, in my arms. The habit of making myself go there has finally become almost pleasurable! 

So many times it would have been FAR easier to stop...

But for someone with chronic fatigue for years, brain surgery and losing most of my muscle mass and weight from being stuck on the sofa for six months ... I am proud of myself. 😇









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Guidance & Path Finder

I have had an emotional weekend. No, make that a funny few weeks with emotions coming up in every part of my life to be sorted. It has not been fun, or easy...although I have got to the point I cannot handle things as they are and so sorting them needs doing...

It started with not even getting an interview for a (brain) charity position I volunteered for.

Where I said the reason I was applying was as I was a brain injury sufferer (as was one of the requirements they wanted) and want to change things, giving details of what I had written and done since my surgery.

I was offering my time for FREE and did not even get an interview! 

How's that for helping you feel you are useless?!

Then I went to a local holistic event yesterday. I'd totally forgotten about it, but it popped up on my phone so I decided to go along as it felt right.

After I got there I walked to the 'workshop' room and was chatting to a woman there waiting - who just happened to be presenting. It was very interesting as her talk was about how the brain can be reprogrammed, and how negative self talk harms our brain, and with it our health...

Which, coincidentally or not, I have been actively trying to just observe and listen to myself these last few weeks...

Part of what she explained was how you would never speak to a friend with the negativity you say to yourself, yet most of us to this and never even question it.

& I realised I'm the worst friend I'd ever have...

Plus I very much need to remember these words:

"I am enough."

Anyway a while later I walked past this same woman at her stand and chatted about part of my cerebellum being missing and does she think the therapy she does would still work? How I feel that my belief and emotions have got more negative since a year or so after surgery.

Directly after my operation, I was sure my cerebellum would be able to re route all the damage - as after all the cerebellum has the most neurons in the brain, therefore giving it the most chance to reroute itself easily.

Now I just feel I have a chunk of brain missing, and a part of me went with it...

I struggle with things because of it, can't easily do the things that used to bring me joy.. and no one cares or will help me try and improve it.. I am stuck by myself.


She showed me a metaphysical meaning book "Metaphysical Anatomy" that was much more detailed that others I had read in the past and when I read the brain tumour personality description I could only agree with most of the words... this was me to a tee..  
I'm buying a copy ASAP!!
 
For some reason I started talking to her about the fact that after my surgery, I felt I could do something. I had a purpose in being able to help others go though a similar experience. So I wrote a book, blog posts, articles etc to help them, as I felt better than I ever did before... plus I could earn a few £s with it, so it would work both ways ...

...but nothing much is working. I don't get much of an income, only a handful of people a year say anything has helped. 

Much of the time I don't even know if it has helped anyone as I dont get any comments...so is it even worth it?? (I totally appreciate that when you are struggling with your own health and life, thanking others is way down the list of things to do!)

Then I mentioned what my neurosurgeon advised me about not doing any more work with brain charities etc and 'moving on with my life'... and well maybe the universe is telling me this too when I didn't even get the volunteer position?! That I need to do something else...but what???

...just what...?

My enjoyment of art, painting and drawing, is gone as I cannot see or coordinate to paint or even to do a dot-to-dot or colouring book as I once could...
Crochet is a struggle while feeling my hands are vibrating and doing the wrong thing...
How do I manage sewing, embroidery etc when I struggle to even thread a needle?..
My hands feel useless when I even put on my jewellery, let alone try to hold it to make any...

I know people can learn all sorts of new skills... but I am too scared to try again and I know I struggled to even sell things last time, when I could do them easier and better, it just seems pointless even trying now.

She said to me that maybe I will get a new path showing soon, just continue doing things that feel good. 

That, yes, my surgeon was right in that when you keep focusing on the worst thing that has happened to you - your body cant ever let go. You are reminding yourself daily. Subconsciously telling your brain negative messages again and again.

Exactly what I do daily...

I need new messages. 

I wandered away, looking round the rest of the holistic stalls, letting myself be drawn to whatever felt right. I had wandered round most of them, none feeling like it was anything that would be right for me, what I needed now.


Until I got to a stall by a company called Healing Forest where they had the most amazing smelling products made of Palo Santo and pendants made from this wood.

They all were lovely in their own way but  I was drawn to one engraved with a wolf paw - the sign next to it saying

'Guidance & Path Finder'. 

But the pendant shape was oblong and looked too a bit too masculine. I asked if they had it in other shapes and sure enough they had another one in an oval - perfect.  I ended up buying some essential oil & natural incense sticks from the wood too.  It was only after I realised the oil is used for anxiety, depression, headaches and emotional trauma... 

I am now trusting I get the guidance I need. 

When I got back home, I looked up the book on Amazon, and sure enough it has loads of great reviews. But also written by the author is another book "Finding Your Own Voice, Your past can control who you are, until you find your own voice" ... I might be looking at that book too! 

💖

                                                                 






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Depression, Anxiety and No Tribe

Sometimes when I really need something, it just kind of appears in my life. A few weeks ago someone mentioned the book 'Lost Connections' as an amazing read, so I added the book to my Amazon cart. A few days later I received a voucher, so I ordered the book for free.

I spent the next couple of days reading and understanding what he was saying in it... and thinking how life would be so much different if we had financial stability, a different society, a group of people to support us. A tribe.

A couple of weeks after I finished this book, I see this TED talk from the author Johann Hari. It simplifies much of what he said in his book within 20 minutes.

I wonder what it would have been like if someone was there to support me before, during and after my brain surgery? Would I have felt so scared and traumatised if I was able to talk to others about my concerns and them answering from experience?

This was the reason I wrote my book, 'It's All In My Head', and have continued to try and post articles on my Facebook page, keep writing this blog... in the hope that it would help others when they are facing a similar situation in the future.

Yet I know it hasn't reached anywhere near as many people as it could have. I don't have the connections, the support or the money...

And somewhere in this feeling I still can't be useful, the depression and anxiety are back.

I had a honeymoon period after my surgery where the anxiety and depression I have struggled with since a teen, seemed to have been taken out with the tumour... but they've crept back. It feels harder to cope with at times as I know it stopped and fully wonder if I did something for it to return. What did I forget? What changed in my belief system for it to return? What's causing me to be stressed?

Reading this book and watching the TED talk makes me think it's probably just as my life went back to 'normal'...

When you are ill, you are allowed to cry. To be sad, angry, or release whatever emotion you feel. As I wrote in my blog post on 19th December 2017:

 "A brain tumour made it understandable. Acceptable. OK. I was allowed to feel whatever emotion I needed. 

Justified."

People were there. (Although not Doctors or medical support... but that's a whole different story!) Yet I had more support than normal, a tribe where I felt wanted and worthwhile. People who wanted me to get better, and who listened to the frustrations of it all. Friends brought presents, sent messages or even just give you their time and visit.

"No one tried to talk me out of crying, tell me it was my fault... friends sent healing and support, offers of help,
my husband just held me." 

What happened since?

That support stopped.



People think its all over and I'm better now. I look well. I don't cry all day. (Well not in public!) My tumour is gone. No one really understands how frustrating the side effects are. Feeling trapped in what I can do to change things. Both from my tumour side effects, as well as my life in general.

People get back to their own lives, their own family, back to our society of making money so they can survive.

Society feels so broken in so many ways. 

After reading this book and talk, I wonder what it would be like if someone 'bought a cow' for me now? When I really need support to feel useful and connected.

Is it as Johann Hari says: 

"Depression is really just human beings with unmet needs"? 

A signal of something much more? 

I still have a way to go...

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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.🤞






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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.
Empty.

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. 

💜

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. 

Confused. 

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:

.