The woman waiting for the plane.

She's waiting. Sitting on the hard, formal, chairs of the airport lounge with tears quietly running down her face. Others, talking excitedly, walk past but as they see her they turn their heads away to avoid eye contact. Pretending she's not there. Not one person offering even the kindness of a smile. The reassurance of a gaze.

To others, she doesn't feel she even exists. Invisible. Just like her thoughts. If only they knew. If only they could see. Would then someone be kind enough to smile? To offer a kind word? To just understand?

Life with anxiety. Where even a positive happy experience can be turned into a mountain of fear. Terrified of what could possibly go wrong. Trauma reoccurring. Just as it did before. Those experiences that over time shaped her into what others see as a nervous wreck.

"Sitting here waiting... waiting... I'm waiting for my holiday but inside I'm sitting here waiting for brain surgery again. Waiting for something where I have no control of the outcome and am terrified at the possible prospects.

So now, I'm overthinking all the 'what if's' and just feel scared. I don't know what will happen. I can never know.

I just have to trust. Again.

Accept that Post Traumatic Stress Disorder has reared in ugly head again and in that acknowledgement it's a kind of release.

A fear still, but a release.

I might be crying at an airport terminal, or tears streaming down my face on the plane. But it’s OK.

I trust it’s OK.

I have to.

There is no other way.

I've won far harder battles before."

It doesn't matter if her anxiety is caused from nervousness, excitement, or downright fear. Her body just feels the same, it responds in the same way. Blank. Empty. Full of terror. Her fuzzy brain magnifying once again into the floaty, wobbly feeling she has been accustomed to for the last 6 years.

 
The invisible injury of a cerebellar brain tumour and the surgery to remove it. The resulting brain fog, loss of balance, coordination, and fatigue. A brain injury. The loss of words when her brain feels like its shutting down. Unable to explain to even to those who love her and will listen. 

Other people, most of the time, think she looks vibrant, healthy, and well; they cannot see the inside injury. Her scar is invisible, some of it hidden by her trademark red curly hair, the rest is internal. Her trauma is in her brain. But then there is the judgement of her looking and sounding like she's drunk, when in fact she's just tired. Sometimes physically tired, but others just emotionally.

An invisible illness.

A life where she often doesn’t belong.

Only a few understand the fight every day to keep going. Finding the joy and happiness in life rather than be drowned by the fear, getting frustrated by the parts of her she lost in exchange for her life.

Yet, most days she smiles, talks to anyone, especially those that she can feel also need the comfort.  She can tell. She senses their pain. She knows the frequency they are resonating. Always there for anyone who needs her. Others saying she's the only one who cares. Who understands. Thanking her for helping them deal with their own anxiety and trauma. Thanking her for her support and encouragement, her advice and experience. No matter the cause.

She's the one who tries to be there. To stop others feeling that pain she's felt far too many times before, when she felt all alone and that nobody else understands. 

A life full of anxiety. Anxiety that was only able to be acknowledged by others when they classed it as a 'traumatic experience'. Her thoughts and her life before that didn't count. No one saw her pain, even those that knew what was happening. They turned the other way, although they knew the traumas she endured, but they never uttered a word, never gave her support. Never said sorry. Her pain has always been invisible. So, she just kept silent. She learnt that no one listened when she shouted anyway.

Her emotions never mattered to those they should have. They were a nuisance, not easy to face. It was easier to say she was too emotional and distract her. So as a consequence, they stayed bottled up inside until they could no longer stay hidden. When she had a valid ‘excuse’ to be upset. When it all exploded.

The release from finally being allowed to cry.

So now, once again, she sobs, tears releasing the memories hidden in her cells. The feelings that need to be expressed to be able to move on from. 

She may look weak, crying, and pathetic. Yet she is stronger than many in allowing others to see the real her. In keeping going when she wants to stop. Caring when others can't see pain. Loving when others see hate or anger. That’s stronger than most of those people that walked past her blankly, grabbing a beer on the plane, a drag on a cigarette, to keep them going. She’s facing her fears head on, letting them wash through her to be released.

As she fights every day, both from people not seeing her struggles nor those invisible fears and demons in her head.

The ones she wants to remove from the rest of the world too. 

The strange thing... when she sees others in that same place as herself. She smiles, asks are they OK. She listens. She cares.

Silently she sits on the plane, eyes shut, listening to a meditation on her phone, taking it one breath at a time. Allowing the physical discomfort in her head from the altitude of the plane to wash over her, along with the discomfort of her mind. Reminding herself it will pass. It always has.

Her husband is holding her hand, but right now she can’t even explain it to him, she can’t easily explain it to herself, plus her thoughts are too painful to say out loud, then there are others she wouldn’t want to hear what she says. She doesn’t need the judgement now. So, she smiles at him, says she’s OK and needs to zone out, while fully appreciating the strength and support his presence brings. She couldn’t do it alone.

She keeps going. She has to trust.

She's more than halfway there when she gets off the plane. The heat hitting her like a wall to bring her back to reality. Once again, she's fought the demons in her head, so now she’s feeling blank, exhausted, and empty. Yet still trying to act normal and not draw attention to herself when really, she just wants to sit down alone. Maybe get some sleep, the easiest way to be able to restart again. 

In the car ride, she can feel her soul start to relax... that familiar smell, the sound of crickets chirping, the warm air, the amazing views, the sights she's missed so much... she knows the way although she hadn't been back for years. 

It's been so hard to travel for a while. Brain surgery, having to be cared for, fatigued, not able to cope with planning or change. Not to mention that having no money from her husband losing his business while having to look after her and the family, playing a rather large part! Then lockdown, isolation, rules she couldn’t agree with…

Now, for the first time in decades, its just the two of them alone. 

Eventually, she arrives at the village she's known for 37 years... loved since she was 11. 

The place that as a child she never wanted to leave. Where she dreamed of living in a villa with an olive grove, being able to fall asleep hearing only the sound of the sea, of nature, of her joy.

Not much has changed. She just appreciates it even more now.

As she finally sits down in the sun. Feeling the much-needed warmth on her skin, hearing nothing but the sound of waves, leaves rustling in the breeze and the crickets. Swallows and butterflies flying all around her. 

She cries a bit more. But this time it's tears of joy. 

They are welcoming her home… once again she feels she belongs in this world. 

Her soul can finally start to heal.

 

💖💖💖💖💖

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:

.

Please don't say this to someone after brain surgery...

I know I don’t process things the same as I did a few years ago, events and conversations now replay in my head until I work them out. Sometimes it can be a few minutes later, sometimes it’s a few weeks!

This one has been going round and round my mind…

When I was out several weeks ago the person I was talking to has known me for about 5 years, they knew I had a brain tumour removed and also knew from talking to me previously that I still had some side effects. But they aren’t a close friend and as far as I know haven’t read my book or blog and probably sees me as being ‘back to normal’ as, in their eyes, I do what I did before when I occasionally see them.

I had for some reason mentioned something about ‘saying the wrong word again and it not ever being the same since I had my surgery’. I wasn’t after sympathy, just understanding. Clarification. As I often feel very self-conscious and judged that I can start saying the wrong things and appear drunk or stupid at times, especially when I am clumsy too. If someone doesn’t know my reason why, then I am sure they are judging me negatively.

But instead of understanding, the person said:

‘You can’t always blame it on that you know’,

 and awkwardly laughed. 

I laughed back and walked away ...  Trying to decide if this was meant as a joke, as a way of saying ‘you are no worse than the rest of us and we all do similar', ‘stop going on about it’, that I ‘should be ok and over it’ now, that I was in a pub and no one else there would even notice, or even implying that I have always been stupid?!  😝

But the words were still festering in my head… 

I hate having to try and explain something quickly, to be asked a simple question or give a quick reply. I almost always feel an idiot when I open my mouth. Judged as stupid. When I am not so rushed and am not stressed I can have hours where I feel in control. 

Yet the times when I hate it, I want to tell people the reason. So they might realise my brain is maybe not working as perfectly as it should, not that I am stupid or it isn’t working at all. So they know I’m not drunk, and they can't say things I won’t remember…

Why can’t people talk honestly with me? Ask about how it makes me feel? 

I am sick of people saying 

‘No one would know’

… of course they would if they gave it more than a few seconds thought. I guess yes they might not know I had a brain tumour, no one can see that scar, but surely they would know I have ‘some’ kind of issue at times? 😬

• Do people not hear things in the same way I feel that I speak? 
• Do they not notice it when I randomly say something odd or can’t find a word? 
• Maybe they just think I sound like anyone else up the pub and why am I even caring? 
• That I just say simple words, as maybe a foreigner would? 
• Maybe they are too polite to say anything? 

But then it seems there are two different approaches from people who know you have had health issues:

One is where someone (and it doesn’t even have to be a close friend, but someone who knows what happened) walks up and says:

How are you doing? How is your health? 

And possibly even adds in the phrase: 

And how are YOU (dealing with it) now?

... Whilst listening! 💖

The other type is where people ignore you, pretend nothing ever happened, that nothing is wrong now and act like your life smells of roses! If you mention something about your health they don’t want to hear, or cannot face, then the act like they haven’t heard you, quickly change the subject or give their opinion while not listening at all. 

Occasionally they will say something like:

“I had vertigo once for a few days, it was horrid” 

or 

“Just have a drink and forget about it” 

– maybe they are meaning to be helpful (I try and take it that way!) but sometimes I want to scream… 

“Seriously? I spent 6 whole months feeling drunk 24/7, not able to eat without spinning, laying down at night and feeling the room move, watching TV gave me nausea, unable to ever 'sober up' before it started again. 

I wanted to focus but I couldn’t, yes my body acted drunk but my brain wasn’t inebriated – it was desperately trying to control the situation, to control the panic. 

Do you SERIOUSLY think I want to drink to FORGET it???” 

  😵😵😵

But this said, I don’t think many people do think, and even less want to upset you on purpose. I just don’t think anyone can truly understand unless they have been there or somewhere very close… 

But please, if you are ever with anyone who has a health issue and mentions something, just say 

“How are you managing at the moment?” 

and LISTEN.

and please...

Don't ever say "Have a drink and forget about it!"

.

And back it goes...

After saying I felt normal for two days, my body has decided to remind me it's not.😒 For the last few days my neck has felt awful, cramping neck muscles below the 'dent' in my neck (where the muscles have wasted), the left of my spine aching as I know I have not been sitting or laying straight from the neck pain, plus the skin around the whole of my scar (from my neck to my ear) is just tight and seemingly pulling at times.

Each time I move I can feel the skin tugging, and sometimes I can feel it even when I am still.

It was only recently when I stood behind a bald man tapping his head to the music at a gig that I realised just how much the skin and muscles on our heads move. As he moved his head I was watching how the various muscles and the back of the head and neck responded, and that often there was a ridge of muscles showing - no wonder my neck struggles at times with so much muscle wasted and much of one side of my head having been cut open.

Even if the surgeons did a perfect job, there will be scar tissue from cutting into it and the muscles, as well as the fact that as I cannot feel much of my head I probably now move and use it differently?

I have also had the 'I cant wake up yet' exhaustion. Even after 9, or more, hours sleep I just cannot open my eyes easily and have to force myself to look at something to keep me awake. Although I have recently been doing more chores than I had been, so I guess a energy backlash is expected.

I have to keep focusing on the fact that I am now generally able to do more each day than at any time since several months before surgery, so about three years in total - in itself a positive.

Plus ... my dog has been sniffing my neck again recently. 😟 I know this shouldn't concern me, but he sniffed it loads before I knew I had a tumour and then stopped once it was removed (see here) ... so it does concern me, maybe more than logic wants to admit.

I think he knows I am tired and aching and is just 'checking up on me'. Who knows? But I cannot imagine the comments if I ask to get my head checked again as the dog is concerned!! 😂
Tim Jones would finally think I have cracked - not that he thought I was far away before. 😜

For now I am watching him and trying not to get concerned as he doesn't look stressed in general (although he did have a few days when he looked upset- but it is firework season) and his skin is OK.


I am also glad I treated myself to some Reiki this week. An hour of bliss in an otherwise stressful achy tired week. It feels like my neck muscle has been slowly relaxing since.

Maybe I just need to do some art and forget about all else? But I know it isn't going to happen, as I'm far too tired for even basic daily chores. So I just have to keep on doing the best I can and hope I get some better days again soon.

There is one advantage of hitting the bottom, in that you know 

you come back up again.

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 💪