The After Effects of Brain Surgery

For some reason I have struggling with the side effects in my head over the last few weeks. I am sure cold weather and being in a cold wind makes everything in my head tighten up and feel number again. When I am out I put my hood up on my coat as much as I can, but that doesn’t seem to be able to stop the tightness feelings.

Then I had a cold and with it sinus pain. I have occasionally had similar for years before- when you bend down to reach something or sneeze the pressure behind your eyes, forehead or back of head increases and all but starts to pound. 

But now this same pain just reminds me of the months waiting to find out what was causing a similar pain in the back of my head and increased dizziness every time I moved, coughed or strained.

The pain I kept asking the G.P about and yet got no answer… 

I can count the number of times I ever had a headache on one hand before I had a brain tumour- so basically having even a mild ache just reminds me of it.

Today I saw a post today on a brain tumour forum where another person is struggling with the dents in their skull seemingly deepening years after surgery– they were told these were caused where they are put in a head brace during their craniotomy. Others also said they had problems with their heads often not even near their surgery site and so I thought I would write a post that may possibly help others realise their symptoms are ‘normal’. Well normal after brain surgery!😉

These are my symptoms today:

• When I wake up my neck feels twisted.
• I still can’t sleep comfortably in many positions.
• My head often gets tight and it feels like the skin pulls.
• I can’t feel much of my head!
• If I get a spot or something I cannot feel it.
• I have two scars, as well as a hole for the ‘drain’ tube during surgery.
• It can itch – what feels like ‘inside my skull’!
• The hair has mostly grown back.
• My head feels SO lumpy- even not near the scars.
• I have an area that sometimes clicks when I rub it, and feels constantly bruised.
• I have tender area on the top of my head.
• I occasionally get sharp pains in my head.

The first I am sure is as I had my neck muscles cut during my surgery and after have been told that some of the muscle has wasted, so I have a big dent in my neck on my right side where the muscle is ‘missing’. 

I know when I stretch the muscle it relieves the tightness a little, but when I wake, at the end of a long day, or am stressed I can really feel my neck muscles ache, the head numbness and my scalp pulling. Sometimes when I go out, I end up doing neck stretches as I am struggling with the aching in my neck, or the fact it feels like my head is tightening up.  

Cold weather definitely makes it worse. 

For months after surgery, no matter how I slept, I kept waking feeling like I had been laying crooked and leaning on my neck wrongly- and it took a while for the feeling to go away. I do still occasionally get this, but normally much milder.

At night I still am not able to lay in some positions without my neck hurting or head feeling tight, just lying on a pillow on my left side feels like I have been laying on a stone after a while – I just have to move. I have tried all sorts of contour and flat pillows, yet nothing seems to get rid of it. 

If I lay on my back I still prop my neck up on my left side with a cuddly toy to avoid me constantly tipping and twisting my neck to one side. If I am lying on my front I cannot face my right for very long before my neck muscles really start tightening. 

Some nights I feel I just cannot get my head comfortable.

I had my greater occipital nerve on my right side totally cut, so I know ‘why’ I have a numb head, but getting used to it is another thing! (See my post on when I first realised I would always have a numb head here) 

When I brush my hair, I get a referred tingle in what normally feels like 2 other places. I have had a heavy object fall on it, bashing my head and yet didn’t feel any pain - it was like it landed in cotton wool.

Just after surgery it felt like I had a 1cm layer of glue left on my head and a constant feeling of numbness. (Part of me really wishes I had known this was going to happen- but then maybe it is better to take one step at a time and not know beforehand?) Now it's 19 months after surgery and most of the time I don’t feel the numbness, unless I touch my head. Then it instantly feels odd. 

I just about have sensation if someone else touches most areas, but I am not at all accurate in pinpointing where the touch is. If I catch my hair or the cold weather ‘gets my nerves’ I have the numb feeling back and what feels like a wig on that part of my head! I can accidentally catch my hair and not feel my scalp pulling or pain at all.

Even if someone pulls part of my hair, I cannot really feel the pain and this strange sensation feels like the area is about 2 inches away from where they are pulling. 

Most of the time I can cope with it fine, but occasionally it upsets me and I get frustrated with it. It’s why I cut my hair after a few months as long hair seemed I was constantly triggering this ‘numb head’ response. Now my hair is growing back, the sensations seem to have improved a little (or I have got used to them!) and the feeling of wearing a part wig has decreased (although certainly not gone). The area that is shown green on the diagram is the worst of it, although the blue area behind my ears doesn’t feel right either, I have a little more accurate, although very dulled, sensation there.  

 

Picture from https://clinicalgate.com/105-occipital-neuralgia/

Oh and I have a really odd feeling every so often, where I lean on a seat cushion, a car seat etc at roughly the central of this green area shown above- and it is like I have just leant on a wooden board and its ‘pressing in’ the whole of my head. Like my skull ‘is’ the wooden board.

Then this numbness goes down my neck and that tightens and the wig feeling comes back- and it always stays for about 5-10 minutes after no matter what I do. It feels so wrong.

I have had some spots near the scar (when the area had been healing) and could only feel a tiny bump with my fingers and then at times a sharp nerve pain somewhere near the area if I scratched it. I have made spots bleed and not felt a thing on my head, just the bump- so every so often ask someone to look at it for me to check there is not a sore area.

When I knew I was having surgery, I obviously realised I would be having a large scar where they were doing the craniotomy and understood I would need a small hole at the front of my head where they would put the drainage tube in during surgery. 

I didn’t realise until after the operation that I would also have an approximately 4cm long scar and subsequent dent in my head at the front where they got the drainage tube in! 

Touching this dent really made me squirm at first, after all it seems I can feel the inner sides of my skull and get my little fingers depth into it. I have been reassured that I cannot damage my brain as it is still a little further in and covered with a tough membrane, but it doesn’t stop me cringing and putting my hood up if I walk in woodlands or anywhere near trees as I am worried I will poke a branch straight in the gap! 

Some times this dent itches, sometimes it feels tender and achy around the area. I can just about feel the ‘hole’ where the drainage tube was now, as sometimes it feels sore and I can feel a dented area there.

The itching has got to be one of the most annoying and constant symptoms. I don’t know that anyone else that has not had brain surgery can understand what it feels like, but my best explanation is it is like getting an itch under shoes that you cannot take off, you can only scratch through the sole and not feel much, or above or to the sides of your foot where the material of your shoe is softer, but it’s not in the right place. You cannot properly scratch it no matter what you do. 

Someone told me they likened it to ants crawling in their skull. There is nothing I can do to stop the itch. Of course I end up scratching it unconsciously, then realising and having to stop myself and all but sit on my hands while I wait for the itch to subside. Sometimes I can itch my neck and it helps relieve some of the feelings. Mostly I just have to ignore it- and (as I was told by my neurosurgeon) hopefully help break the neuron connections!

My hair has mostly grown back. I am told there is no obvious missing hair on my main scar, and in fact the scar is very hard to see. At the front where the dent is, if I pull my hair in the wrong direction I can just about see a patch where the hair hasn’t grown, but no one has ever told me they have noticed it unless I actually move my hair and show them. One advantage of curls!  

19 months after surgery.

From a 30 or so staple surgery, you now cannot see any visible scar, and the dent (from muscle wastage) I can feel is hidden by my hair.

This is the only slightly visible scar - a tiny bald area and dent

Although I have to move my hair out the way to find it!

My head feels like a load of lumps and dents! The area of surgery literally feels like the skull has a plate on it, it sticks out more at the bottom and feels like a ridge to the side.

The natural bump at the centre back of my head feels like I have less of a bump on the right side as my head is still bigger there. I assume they somehow ‘pinned’ my head during surgery- I don’t know if any of my lumps or dents are because of this?

At the back of my head almost under my right ear at what is I assume the back- base of my skull, if I rub this area it still feels bruised and tender. Occasionally I can touch it and it feels like the bone clicks. I try and avoid it!

From the day after surgery I had a really sore area on the top of my head- nowhere near either of the incisions. It felt like my hair had been ripped out and the scalp damaged from the action.

After a few months it still felt extremely tender each time I touched it. Gradually this feeling has reduced and it only annoys me every so often- mainly when I am tired or run down. I have been told this is from the damaged nerve.

Sometimes I get a few sharp pains in my head, mostly at the back where the scar from the tumour is, but occasionally somewhere else. I think it is my version of a headache?

I often still touch my head, I guess in the hope I will get some feeling back. It sort of feels relaxing, yet at some point I realise yet again how little I can feel and I think it gets ‘too much’ for the nerve endings, so I end up just rubbing my head in frustration of the itch and numbness, my hair going everywhere, just trying to get it to work properly. I end up tying my hair up just to pull it all out the way so it dulls the sensations that’s its ‘wrong’.

I have been told that things can still improve, most of them within 2 years after surgery, so I hope it still keeps getting better?  But I guess it’s something I have to put up with as a side effect of being alive! 

I know I was told before surgery that my head would never feel the same again after, but since then I haven’t had much support at all with how it feels and if it’s ‘normal’. I guess the side effects are slightly different with everyone, and sometimes it’s better to live with hope that you will be the lucky one? 

Maybe my symptoms are lucky? I do appreciate they could be far worse.

A Very Happy un-Christmas

Saying you are not going to do anything for Christmas feels a little like I imagine it would be if you had just announced you had given up your well paid and respected job, have bought a camper van and plan to go driving around the world. 

Everyone thinks you are mad, but won’t say it – well not to your face anyway. 

Although I have a feeling more people would understand the desire to travel than the desire to stop the Christmas ‘celebrations’? But I didn’t celebrate the 25th, and (very surprisingly for my past Christmas record) it was a lovely day.

I had told the kids (and Dave) ages ago that I was not going to be celebrating it, but that they could do what they wanted to as I would not stop them. The kids chose to either go to their partner’s family, or my parents, and have Christmas with one of them. There was a part of me telling me that this shouldn’t be right- that I am somehow letting them down and ruining Christmas for them. But deep down I ‘knew’ it was fine, despite what society may think. 

I was doing what makes me feel best and with that I am sure what was best for them too. Plus if there is one thing I want my kids to learn is to do what brings ‘them’ joy and not what is expected or wanted from them. Loving and honouring themselves.  

Plus why would they want to be with me when I am just putting on my fake ‘oh isn’t this fun’ expression, hating every ‘celebration’, while silently just wishing the day would fast forward? I knew as a child when my family were stressed so why wouldn’t they too? I don’t want that for them.

I didn’t buy Christmas presents, nor send any cards or say Happy Christmas to anyone.

I did buy each of my children a fluffy clothing item for winter solstice and gave it to them on the 21st. Plus for Roan (who is only 11) I got a PS4 game he wanted to give him on Xmas eve (I felt too unkind giving him nothing when I had brought presents for all the older kids when they were his age). But that was it.

No stressing over shopping or waiting for items to arrive in the post, no making myself skint and us struggling to buy dinner and pay the bills for the next few weeks just so people can have an extra present they don’t need which is supposed to somehow be a sign of our love.  

As society said so.

So we took the kids to my parents on Christmas Eve, I still got given some items when I requested not to have anything - so took them home with me (and which if I am honest has annoyed me as I said not to do so as I wouldn’t be buying anything back- but I did tell them, so I guess it is their choice if they still feel the need to buy things) and the day was about as Christmassy as I could manage. Many a time it came too close and I wanted to walk away, and I did escape for a walk in the woods with the dog. But I managed it and we left before dinner. I then got a headache coming home in the car and felt I needed to sleep to ‘reset’ myself after we got back. I don’t think many people can understand how physically draining a supposedly fun family experience can be?

My parents actually gave me a jigsaw puzzle, so that evening while Dave was watching some junk on telly, I numbed my mind into a meditative state by jigsaw! I was totally in my own little world for a few hours- just what I needed. 

On the 25th we didn’t wake until after 11, got up and took the dog for his favourite walk in the local woods, had some lunch and I fell asleep again! 

Dave watched some TV, cooked dinner (yes we had a delicious bean casserole with lamb noisettes) then later went over a friend’s house to see them. We spoke to each of the kids – who all seemed to be having fun- and I was just glad I wasn’t there. Not pretending.

I didn’t miss any of it, my stress levels have been half what they are for a normal Christmas, I don’t have to take anything back to the shops.  Put decorations back in the loft or tidy mess. I still have the same amount of money in my bank account. I didn’t have to pretend- I could be me and no one moaned at me for that, and my kids all did what they wanted.

A no stress, un-Christmas… I’m repeating it next year. 

Solstice Bliss

I love winter solstice – I have internally celebrated the shortest day of the year long before I knew anything more. 

These horrid depressing cold dark afternoons as well as evenings are now at their worst, and today is the day where it starts getting brighter again. 

The light after the darkness- which all felt so much stronger and emotional in 2016. A perfect metaphor for my year.

This morning, by some twist of fate, everyone went out. I had the house to myself. This is probably the first time in several years I have had most of the day alone. (I have 4 kids, one who is home educated and a husband who works from home- they don’t all go out for more than an hour at a time, and even that is very rare) So I took the opportunity to quickly put away the mess in my art shed and get some paint out!

I have barely painted since November 2015, that time I did some painting and I really struggled to see what I was doing properly and felt I couldn’t coordinate properly and didn’t know why. Then after the tumour I couldn’t even look at a picture without spinning, it took weeks to even see in the mirror to put mascara on my eyelashes and not all over my face or eye instead. Many months to even be able to colour in basic colouring in books and not just go straight over the lines. I couldn’t type without looking at each letter of a word on the keypad. 

I did a couple of paintings near the end of last year, and they didn’t feel, or look, right. I couldn’t do anything detailed and so stuck with very abstract ideas and basically they were not much more than art therapy for me. I felt angry with myself. Disappointed. So since then I didn’t really want to upset myself again and was a little scared to do any more and fail. I loved painting, it was better to think I could do it still, and yet chose not to, than face the fact I couldn’t now do so.

Yes my son was living in my art shed this year, but he has been gone for over 6 weeks and all I had managed to do was tidy it. Procrastination has been my middle name.

But today the shed was empty, I have a heater in there, I have all my paints, canvasses and brushes all ready and waiting to be used… and everyone was out, for several hours. 

If I fucked it all up, I could just pretend I never did anything and they would never know.

So I had no real excuse and just lots of reasons to try.

I was actually thinking of making something with mod-roc, just to feel the texture on my hands and make a mess, but realised I needed to use acrylic paints (my favourite) and get texture with them instead.

So I got a new canvas out and just felt what I wanted to do, I wasn’t planning to make a pretty picture if that wasn’t what wanted to come out, and it wasn’t. But then a few layers later and I realised I wanted to be positive, and so it changed. In the middle of a very wet layer waiting to dry I found the, somewhat unfinished, pictures I did last year and decided to layer over them. Give them emotion.

I still very much had my brain tumour experience in mind and needing to be expressed in the art. So one painting felt like the ‘me now’ picture with positive words, hearts and flowers. It doesn’t even feel like made up words- it feels real, how I am now. (At least most of the time!)  

Another had a darkness around the outside, and lots of red (I guess after all it was a blood vessel tumour and unconsciously I painted the colour that represented it) with brighter colours and ‘go within’ in the centre. I had to go within last year to start to trust I would be ok, to heal from the pain of it. 

Another had butterflies coming out of the chaos of the rest of the paint. The final canvas I painted over was from last year when I had tried to depict the image in my head of the Angel shadow figure at the other side of the room that I saw after my operation. I wanted to keep the rough idea of it, but the picture was messy and I needed to give it more depth; so basically painted over it and made the colours and shapes much bolder, plus added what I felt was being given to me at the time – love- painted in the form of a heart being given from the Angel’s hand. It still seemed to have a space at the bottom and so I wrote what I felt this image meant - ‘You are Safe’.

I literally finished this picture and put all four pictures on the wall to finish drying and Dave walked back in the door. Just as the light was fading too. Perfect timing.

But it was bliss! 💕 I ended up painting some with my fingers, to feel what I was wanting to show on the canvas. I did struggle a little with smaller details, but this might have been to do with the fact I couldn’t find any smaller brushes! But I could see ok, not perfect- but nothing like it had been, I didn’t drop the brushes on the canvas or feel somehow I couldn’t paint where and how I wanted to. I now feel I can try finer detail again on something else later, and accept it if it doesn’t work well. But the best part is I can ‘feel it’ again. And for that I am very thankful. 

Alcohol wishes…

Right that’s it. 

I am going to start drinking alcohol again. 
I know I haven’t drunk for 25 years, but I am fed up for being the only one sober all the time. 
I have stopped feeling confident about myself.
I need to take loads of selfies to prove my happiness and worth to myself. 
I feel I need to drink again to be socially accepted and society makes it so unsociable being teetotal, I feel an outcast! 
I miss the feeling of being slightly out of it, something taking me out of my body and having control over me. 
I want to gather with friends to drink, so I can forget about how insane and unpleasant my life and the world is. 
Just feeling a little pissed…

I want to go to gigs and talk about something so that the other person does not understand half of what I am saying and the other half wishing they couldn’t. 
I want to act inappropriate. 
I want to drool over young men and embarrass them and myself. 
To play with other men’s long hair in the way other drunken women do to my husband- after all surely they will like me caressing them? 
I want to heckle the band, and keep shouting at them the song I want to hear - as, like everyone else, I know if I scream loud enough they will be able to somehow play it without ever rehearsing it.

I want to forget much of my life – to take that chemically lobotomizing alcohol again. 
My life is crappy enough so I might as well be broke and hung over because I’m too scared to deal with it. 
Although being hung over is nowhere near as bad as having a brain tumour- and I dealt with that fine. The house will look after itself, as will the family, while I am slightly sedated and dysfunctional.

I feel I need alcohol to help spice up my empty life and make the boring gigs tolerable and wine o’clock the day away.
I am happy that my soul can die a slow death trying to fit into the herd. 
I’m fed up with not fitting in. 
Alcohol is an acceptable way to fit in. 
I am happy if my kids copy my behaviour- after all I am only showing them how to have a good time! 
I want to lose the responsibility for always having to drive everyone else home- others can stay sober and drive me for a change.

I miss that feeling of not quite remembering what happened the night before. 
If I said or did anything I would regret or if I gave my phone number to the nice looking guy at the bar… or went home with him…

I will also be able to stop worrying about what else I shouldn’t do- I am also going to eat those great snacks at the pub so I fit in.  
It will be great to put on a few pounds – so I can have conversations about how to lose my weight with other women. 
I need to fit in with the masses and long to diet.

The Chief Medical Officers’in UK say I can drink 14 units of alcohol a week safely, so I believe them, and that this amount won’t increase my risk of cancer or any diseases. 
I’m sure a few extra glasses over this won’t hurt, as after all they will be overly cautious in the advice. 
I know they would say if there were any risks to drinking. 
After all I believe all the government tells me.

I am more than happy to spend £30- £50 a night to enjoy myself and forget my worries for a while. 
I might get a job just to pay for it. 
After all, I am not the only one who works to fit into the system…

And finally, if I wobble, people might just think I’ve had a brain tumour instead, and not that I am too pissed to walk straight…

 …& just in case you were not sure, or don’t know me…I am only joking  💕! 

Anxiety and Brain Surgery

I read this today on a friend’s Facebook wall …

“You never really recover from depression.
Or maybe I should say you recover, yes, but you never really forget it. How could you? It's like being out on 'day release' knowing you're being executed later that evening when everyone else goes home for supper.
It's like being able to hear the rumble of bombers overhead, knowing they've come to destroy everything. And everyone else is queuing for lattes.”

I can so relate to this in my past ... primarily with the sheer terror last year of knowing I had to have brain surgery. Lose the last bit of control I was desperately hanging on to. Everyone else seemingly acting like all was normal, while feeling like I was waiting to be shot instead. Trying to keep calm and not go insane…

But then with more memories it brings back all the times in the past when I felt nothing but sheer panic with a little bit of depression thrown in. No one seemed to notice I was anything other than angry, a seeming control freak who didn’t want others to get drunk or complained about whatever problem was making me feel worse. What I couldn’t cope with, but was seemingly not an issue to them.

But have you ever been totally terrified and feeling you will lose control and wanting someone to support you- yet they are not able to be there for you? To hold or calm you, or drive you home, or even react properly as have had too much alcohol and are not ‘getting it’. The energy used to ‘keep going’ and drive yourself (and your precious family) home is simply exhausting. It feels even more of the world is heaped on your shoulders. 

And the fear transforms into anger and hate.

I coped with various levels of these feelings for years, and no one really seemed to be able to help or even understand. No I didn’t live with an alcoholic, but even one day a week of him going out and having a few pints and the panic and exhaustion that followed took me a week to recover from. I must have spent well over 20 years (yes years, not months 😢) with various forms of this, then the last 5 or so on a much lower scale as I had finally managed to address the issues and my inner demons using various alternative energy medicine tools to support myself.

Then I had the time stopping diagnosis that I had a brain tumour. The world was even more fuzzy and distorted for a few weeks than I ever thought possible. It beat the time when I was 17, and finding out my boyfriend had just drowned, several times over…

But I’d never worried about that one happening?! Apart from my Nan’s comment when I was a child about cutting off  my red curls if I had a brain tumour, I don't think the thought had even really crossed my mind. I found it almost quite ironic that it was probably the one thing I’d not worried over yet it happened anyway.

I feel one of the things that helped me most , yet also what upset me most, was when I knew I was having brain surgery others seemed to think it was ‘OK’ to be scared - panic- terrified... It was sort of understandable (even if I felt it a little dismissed about the severity of my panic, especially with the doctors) … 

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.

Yet the 1000's of times in the past when I had a similar level or sheer terror or panic I tried to keep silent, as I know when I expressed it I was either silenced or ignored or dismissed. Told that I needed to not think that way and ruin things, nor upset myself (or others) … This terror I had dealt with for years.

Alone

A brain tumour made it understandable. Acceptable. OK. I was allowed to feel whatever emotion I needed. Justified. Yet managing similar feelings for years - alone - made the silent internal panic easier to cope with. Both with the numbness before (I had dealt with far more severe panic attacks than this and survived) and after the surgery - when I was totally dizzy for 3 or so weeks after. 

Actually dizzy doesn’t do it justice-  it was like sitting on a spinning teacup ride at the fair while starting to feel a little nauseous if you tried to do anything than just go with it. Having to eat there, walk to the toilet on there, be able to think enough and talk so it made sense - still on the ride.   

Just knowing others were there and understanding my terror helped. They couldn't do much - but they were there, trying to do what they could and help. After all I was allowed to feel what I was feeling with a brain tumour. It was acceptable. Plus everyone said it would stop in a few months maximum. It had a time limit.

I think I cried several times a day for about 6 months, deep from my soul tears, enormous emotions - released all my fears, anger, bottled up feelings from 40+ years ... plus I felt a strange gratitude, a love of even simple things, something small would make me cry tears of joy. It might be happy-  but to me it was still another emotion you are not ‘allowed’ to express…

My internal prison was worse than brain surgery!

Although I will add - it's like having the tumour and brain surgery burst the bubble. I felt if I could survive that then I could survive far more than I ever gave myself credit for. I found out I am far stronger than I ever thought possible.

Most of the fear, anxiety and depression has melted away ... 💕 Combined with a little bit of CBT for deep issues  I knew I needed help to get rid of. But now I understood them. I could even challenge ‘myself’ to address them and take steps I wouldn’t have dared to before.

How much was from the fight or flight reflex – which is supposed to stem from your cerebellum (the area where my tumour was) - I don't know? But over 18 months later and it's definitely a case of living through hell to see heaven 💗

Yes you never really forget it ... X

Quote above from Tom Morley at https://medium.com/@vibenavigator

 

A Small Sacrifice

Today was the first time in years, ages before feeling unbalanced or having brain surgery, where I had to sign for a purchase where the signature on my card needed to match. (The card machine hadn’t worked properly so I couldn’t enter my pin number)

I failed.

The cashier looked at me and said the signatures look different and so took my card and just completed signature to her supervisor to check. When they came back over I showed the supervisor another card and told them I had brain surgery and my coordination loses it sometimes. The supervisor said the other card’s signature looked OK to what I had just signed and left.

I know I still can’t coordinate properly, I guess having a freeze in the middle of signing my name sums this up perfectly, but I also know I am totally grateful I am able to go alone to a store and buy the items I need without any fuss. I actually didn’t feel upset.

I all but wanted to show her my scar and photos and tell her exactly how a wobbly signature was justified and how proud I am. That she didn’t know anything up until I told her.

I keep thinking that maybe I should be upset? The tumour has changed me, yes it’s made me rethink plans I had with art work that I want to do. But it’s not like I made a living out of it, if I have to I will just paint in a more abstract style and accept and abandon the fact that I can no longer copy a detailed drawing well.

Today it seems a small sacrifice.

Crying in the Rain

I have always liked my own space, especially outside in nature, but since being ill there has been nothing better than walking outside and there being no one else around. Today’s dog walk was in the sleety rain and I was the only person at the park (I much prefer it when it’s too sunny for most people and I am alone- but hey the rain will do).

I walk round talking, crying and laughing to myself - without the worry that I will have to explain why I can barely see from tears to anyone else and release all my worries to the universe.  

I also sometimes still do my neuro-physio exercises where I turn my head from side to side or up and down as I walk, and often it can make me feel a little unbalanced and wobble. It scares me. So I asked myself, out loud, why…

Is it as I am worried the tumour is or will come back? Well yes I guess a part of me will always worry if it will return. But at the same time I know worry is a pointless emotion. It’s just going to stress me for nothing. Worrying won’t stop anything happening if it does, but it will pretty much ruin much of my life and make me more miserable about it all.

I never worried about having a brain tumour for more than about 5 minutes of my life before 2016- but I got one anyway! 😂 

Yet I worried about so much which hasn’t happened and ruined so many days, even months, years, over it. For what? Nothing positive. I gained fuck all from it. (Probably apart from a few wrinkles!)

I guess part of me is scared that the dizziness will get worse again. Actually the uncontrollable dizziness terrifies me more than the prospect of the tumour returning and needing more brain surgery! 

To feel you are drunk and you want to sober up 24/7 for 6 months was exhausting. Just the longing to eat without spinning, to walk without hitting a wall, to feel you cannot coordinate your legs properly, to stop feeling ‘travel sickness’ type nausea every time I looked at a screen. The only rest being when I closed my eyes.

That is what scares me, the thought of that coming back.

Yes I still wobble easier than most people if someone bumps into me, yes I still struggle standing still with my eyes shut and yes it gets worse when I am tired. But I am fine 99% of the time. I can even wear (wide) high heels and I don’t think I look too drunk! 

And if this and the still somewhat slow or muddled speaking and thinking (well…and sleeping for England) are my only problems after major brain surgery then I can manage, and even thank my lucky stars. 

I am so very grateful that no one looks at me and sees a problem. (Many times when I have told someone they seem genuinely shocked and say they would never have known) I know others with brain injury hate the comments that ‘you look well’ when on the inside they feel awful or are struggling, but I am so grateful the problems are only on the inside and no one else can easily tell. If you see someone – how is another person supposed to react apart from saying what they see?

Plus I want to look well on the outside. I know full well that when the inside is hard to deal with my outside doesn’t look as healthy. I look tired, or old, or grumpy.

So if someone isn’t just pretending to be polite, it’s a pretty big compliment as I know I have got over much of the inner shit- not just brain surgery, but life in general! - and it shows.

If I wobble and accept it for what it is, a wobble, I can cope. After all someone removed a part of my skull, cut into my cerebellum and removed a 3cm blood vessel tumour for 5 or so hours!

I am probably still recovering, and even if this stays it is fine to manage with. Then the physical wobble is just that, and not an emotional one too. It’s only when I start overthinking that the emotional wobble arrives – then the worry from it shows on my face and it all magnifies in a downward spiral…

And you know what? I am proud of myself. Fucking proud.

I still want to hug my brain surgeon and often send him thanks in my thoughts – as I know I wouldn’t be here without him! But I did the fixing myself from the day I left the operating theatre.

I’m proud of any and every compliment I get now- I bloody worked for it!

So I start the park walk with tears mixing with the rain, and walk home with a grin. It’s OK. Today is OK and it’s just me, slightly imperfect as I am.

I accept it.

A Happy S.A.D. Non Christmas

I haven’t liked Christmas since I was a kid. When you grow up and realise that your life doesn’t get better from any gift no matter how amazing or expensive, as it doesn’t change anything else and how others treat you the other 364 days of the year, or how you feel inside.

Then you have kids and sort of get sucked into it- the 'you have to trick kids into believing a mysterious man gives them presents by their bed and the fact you ‘have’ to celebrate Christmas or it won’t be fun for them otherwise'- and the implication of how can you ruin that for them by not doing the same? Comments everywhere, from family to every commercial on the planet…

Yet it’s me that buys all the presents every year, (even those supposedly for me!) , works out the best we can afford with finances we have (I have never understood the paying back the credit card all year theory of Christmas) so that everyone gets something ‘they deserve’. 

Trying to work out what to buy to spend the same amount of money on each child, buying the presents for the family who don’t need them (well not now anyway- I can think of times of the year I could buy a gift and it be much more wanted, needed and appreciated), orders and buys the food, the wrapping paper, the tape, the cards. Puts up the tree, the decorations, the lights (and packs them all carefully away each January)…basically exhausts herself for one supposedly ‘special’ day. For a religion I don’t even belong to or believe in.

And I won’t mention the expectations on this day having to be ‘perfect’. The perfect family day that you can’t ruin (with your stroppy redhead temper!) Every year I don’t know if it’s the darkness, the coldness, or Xmas which makes me feel S.A.D (Seasonal affective disorder)?? …so bollox to all of it. I don’t have the perfect family and I certainly don’t have the perfect attitude.

And then I had a brain tumour…

Last year (7 months after it was removed) I didn’t do much- apart from bought a few gifts online and then sat in my newly gifted onesie all day, thinking:

‘Fuck it, I’m alive- what else matters?’ 

We didn’t have a tree or lights as I couldn’t get them down from the loft even if I wanted to… and I didn’t. Dave cooked as he chose to. I sat on the sofa bed in the lounge for much of the day reading a book while others watched TV. (yes we were so lazy we put the sofa bed down!) Just sitting in peace, the more ‘normal’ the day was the better.

But I still felt I was lying to myself, saying this crappy saying. I don’t wish someone a ‘Happy Christmas’ – I want them to be happy inside always, all year, be true to themselves, authentic, loving, understanding… not just a fake ‘aren’t we all happy’ bolloxy day.

So this year this is it. I am not doing any Christmas. I do feel a little guilty that ‘should be doing something for Roan our 11 year old, but I have decided the gift of him seeing my authentic self will be better than any present I can buy him. I am not buying cards, or presents, or putting up any decorations. I have said that I don’t want gifts for Xmas.

If anyone feels the need they can buy me something any other time of year. Give me a gift when I need it, means something or not when you are ‘supposed to’!

If my family want to do anything, I am not stopping them, just I don’t want to.

I feel like I might somehow celebrate the winter solstice on the 21st December. I have internally celebrated it for years- that shortest day which means light can only get brighter again. The darkness is at its worst and is going again from the increasing of healing sunlight. This slightly took on a different meaning last year when I lit a whole tray of candles to celebrate the darkness of a brain tumour fading from my life, as I sat and cried in a candle lit room.

This year I will give Roan a present that day, to stop my guilt that I cannot just do nothing for him. I might decorate a few candle holders. I might not. I’d consider putting lights up, but I can’t be bothered to get them, and know they would be then up until new year… So my salt lamps and candles will do.

And it’s the 1st December tomorrow- and I’m not dreading it! I’m just partly hibernating, slowing down, wanting to keep warm and rest and counting down the days until it starts getting brighter again.

I CAN change

It’s lyrics again. I love the lyrics in songs probably more than I love the music. Well maybe except for when you can feel the passion of someone playing amazingly and the instrument is speaking without words instead.

Yet again it was ‘Free bird’ that got me, but this time it wasn’t the instrumental part, it was the words “I can’t change” and “…this bird you cannot change”… and at the same instant it made sense as to why this is often played as a funeral song.

The person cannot change- so they die. End of. They couldn’t change… their habits for a healthier lifestyle. They couldn’t change their hate and anger. They couldn’t change their job, their debt, their priorities, their addictions, their risk taking, their fear, their belief system, the belief of others, belief of what’s ‘normal’ … change themselves.

Of course this won’t apply to everyone, there will be some who changed nothing had treatment and are ok, and there will be people who have accepted their death. Learned their life lessons and feel death is just a part of the bigger picture, but from the people I know who have died this seems a minority.

But there are so many stories of people with a ‘death sentence’ of all types of cancer, Parkinson’s, leukaemia, MS etc who have healed, have changed. They changed themselves. Some will have done so alongside the conventional treatments (if this feels right and healing for ‘them’, then it’s right- I had surgery after all!) But many will have, supposedly, ‘spontaneous remissions’ without any chemotherapy, drugs, surgery or radiation. Yet they fully changed their lifestyle, their diet, their toxic emotions or whatever was needed for them.

If what you are doing now has given you an illness then expecting to just take a pill, continue as before and expecting to heal is madness!

You need to change something be it your toxins you absorb or eat, your lifestyle or attitude. To expect to stay the same and heal is just insanity. As the quote says: 

“Insanity is repeating the same mistakes and expecting different results.”

I know I did change after I found out I had a brain tumour. I addressed and lost many of the unconscious beliefs I had about myself and others. I cried for weeks releasing trapped emotions I had (as well as doing energy release techniques), I addressed every single reason possible as to why and how I manifested this tumour into my life. Even those emotions that hurt- a lot. I don’t believe I was a victim, I never felt something outside of me was to blame. 

I’ve had this experience for a reason, for lessons (and written them in my book). 

I changed my (already ‘good’) diet, I meditate, I get healings, I use the outside gym near me daily (I’d never been there before), I addressed my fears… I’m still working on them, on ‘me’. This will be a lifetime of change. Listening to my body.

Maybe more people will also realise they can change? And hopefully before they get ill in the first place.

Art, Procrastination and a Brain Tumour

I have an ‘art shed’ at the end of our garden. It was bought with the money I was going to use on continuing the second year of a part time art diploma. But instead we decided to make a permanent place to use for art instead.

It then got cold and damp and needed insulating and I did so, but struggled to spend the money on ‘me’ to fix it. It was all a ‘waste of time’. Plus I find one small problem with art- you want to stay there all day, which doesn’t work well with home educated kids and a family. Not to mention fatigue, where if I did too much I couldn’t handle the household chores on top very well, and so I procrastinated. 

Then in 2015, I started struggling to focus on the more detailed work. The last thing I painted , when I needed to outline it, I really struggled. My eyes felt they were wrong and blurry, so I changed it a little and made it more abstract, but silently gave up.

Then I got ill, then I found out I had a brain tumour, in my cerebellum- the very part that controls fine motor skills and coordination (amongst other things)… I couldn’t even see, or walk, straight.

The night I had brain surgery still attached to drips, I was holding my fingers together as you would hold a pen, trying to see if I could move my hand to write my name. Silently writing invisible signatures under the bed sheet. Crying. Wondering what I would do if I could never paint again. The thing that I love, yet the only thing I have always held back on. Scared of failing.

A few weeks later and while I could hold a pen ok, I would still write the wrong words, letters were in the wrong order or not legible. I couldn’t spell as I forgot how to spell words I knew easily. I had to sound them out in my head each time. Even forming letter shapes was sometimes hard, the fluidity wasn’t there, it was somehow broken in my brain. Yet I wrote. I scrawled notes that only I could have ever deciphered, and then typed. I hit the backspace far more than any other letter on the keyboard, often two or three times a word, as I kept typing the words wrongly, and spell check was ever so needed, but I kept going.

The colouring books I had bought before the operation to entertain myself I couldn’t do properly. I couldn’t see where the pen nib was properly and I couldn’t coordinate to keep the pen were I wanted- or even within the lines. It felt the most depressing thing to do, somehow torturing myself on what I now couldn’t do. Patience Jo, learn patience. I accepted that maybe I would only ever be able to paint abstracts from now on? But hey, people paint with their feet. I just need to give myself time.

A few weeks after my op, my son moved back here to live in my art shed- as somewhere cheap to live- followed by his girlfriend. Well it didn’t really matter as I couldn’t see it anyway, my world was still spinning violently, but all my artwork and materials got packed up (with me all but shoving it in boxes as I couldn’t see it correctly) and spread around the house, in the loft and under the stairs. By the time they moved out it was cold again, and I didn’t feel up to sitting in my art shed even if all the items I wanted were already there, and there was no way I could get in the loft or carry things as my body was too weak to do much. But I managed to tidy it a little and paint a couple of very abstract paintings- helping me release a little of my trauma with art therapy!

Then last March, my son and girlfriend moved back in! Once again the few of my items were tidied away into various boxes and corners of my house. I still wouldn’t know how I would be able to paint.

A couple of the times in the summer I tried using watercolours, or did a pencil sketch, but found it so hard- and even more depressing. I’d constantly go over the lines of where I wanted to go and it didn’t really help my confidence that I could do much.

So I wrote a book! I often couldn’t type or write correctly, but I kept going until I wrote seventy thousand odd words and edited and published the book myself.

From the person who often quits before she has started, I did it. I completed a whole book and got it printed 16 months after the date of my brain surgery.

Once I finished I got the desire to paint again, I ‘want’ to do work that is detailed- but who knows if I can easily or not? But mostly I just want to feel the paint on my hands as I work with the textures. Yet it’s October and my son is still living here, so I keep waiting… I’m getting good at that…

I was asked did I want my art shed after he moved out as after all I had not used it much in 2 years… and I almost broke down in tears screaming “it’s mine, don’t you dare take that away from me!” 

Although I am also a little nervous …will I be upset if I still cannot look at work in detail? Will I be able to do any work that I can sell? Or will it just be a large amount of personal art therapy?

He is moving out within a few weeks, then I need to find all the storage shelves that have been dismantled, the boxes of materials in the loft, the paints, the paper, the canvasses. So I have things where I need them when I want. I know it will make me feel grumpy as I hate doing chores I shouldn’t have had to do, that I will have to get others to help me (I still can’t climb in the loft) and it will be cold …

but I know my soul needs to paint. It told me to write quotes on canvas before I even had the tumour removed. I need to do it. To heal me. 

Negative days and dreams are OK

I’m sitting here and I don’t know what to write, but I feel sad. I feel there is nothing I can write that is positive… maybe I don’t need to be positive? 

Maybe I should just embrace the fact it’s OK to feel crap, hating the cold weather, the lack of sun, the dark evenings? Just accept the tears, that the leaves are falling off the trees, that things are falling apart?

I guess I could deal with it far easier if it was just for a few weeks, maybe even a few months, each year? But it’s 6 months. ½ a year. ½ a year of not feeling the warmth and healing from the sun when I need it.

I want to cry.

I want to move.

I want to live abroad.

It’s funny as the first time we went to Corfu (when I was 11) I just felt ‘at home’. That total peace inside – that my soul was home. I felt the similar in Majorca, swimming in the warm waters of the cove at night under the stars. Again when we went to Spain last month. That contentment inside.

How do I change it? I don’t know.

I just know I need to. Somehow.

Dedication to my Tumour

Today I had 2 notifications on Facebook that I looked at one after the other. The first said:

"I fucking hate brain tumours and everything associated with them." 

The second post was a quote from Sargent Johnny Joey Jones (http://johnnyjoeyjones.com) with a picture clearly showing him with artificial legs from above the knees, saying:

"People ask how I stay so positive after losing my legs… I simply ask how they stay so negative with theirs."

These two sayings are just it… the difference is us. How we deal with our situations we find ourselves in. I really do understand that one of the hardest things is to love ourselves- with ALL our faults and problems, but I only really understood what he meant by this quote after having my brain tumour.

Saying you hate brain tumours and everything associated with them, especially when you either still have one, or have had one surgically removed seems to me so very wrong. You are hating a part of you - what you are now, and with that you will always have pain. It feels the hate will always keep you having and focusing on symptoms from your "fucking brain tumour."

I learnt so many positive lessons from my brain tumour. It caused me to digest and really absorb all the self-love books I had previously read, understood, but not properly digested and were not part of me. The guidance in them just suddenly was in me, part of me. I got it.

You need to love you, to be able to totally unashamedly look into the mirror and be happy and grateful with all you have.

I am so thankful every day that I can do what I can do and although, yes I do get a little annoyed or frustrated at times with what I have lost. (and occasionally angry when trying do to something in a rush!) Most of the time I try to accept or improve things I need to do from a state of loving myself rather than hating myself for what I cannot now do.

As Anita Moorjani says very clearly in her books:

"You need to do all from a place of love- and that way miracles and healing can occur."

My brain tumour taught me:

That people I know care so much more than I realised.

As do people I didn't even know… Dr's and nurses who literally are there to help heal you.

Strangers who pray for you and send healing.

That our bodies are amazing- they can heal from so much. I mean - shit - I had my skull opened up, my brain fiddled with, but my body has healed itself. Yes the surgeons stapled me up, but my body healed and removed the swelling etc innately.

That we have an inbuilt strength, love and healing power.

That being 'you' and loving you, is the best you can do for yourself and your family

Happiness is a state not a place and you certainly can't buy it!

To listen to myself. (and action it)

Or as I put in my book dedication to my tumour:

"You almost killed me, but you saved me too." 

💗

 

                                   

Weekend of Synchronicity

Just woken after a very busy weekend of synchronicity …

On Saturday Dave asked me to put something back in the car that was parked outside the pub he was playing at ...and walking past my car with her son was Elaine - who had the exact same brain tumour removed also at St Georges with same surgeon!

I met her on line on a brain tumour support group - baring in mind I have only seen 3 other people online who have ever had the same tumour as there are only approximately 40 a year of them in UK!! 

Knowing she was OK after surgery was a life saver to me before I had my op…

But to literally walk into your 'tumour sister' you had never met was amazing!💖

Then yesterday Dave and I went to Kent to see his old boss (also a Dave) who had just got married and was having a mini music festival in his pub garden! Dave got the job with him back in 1995  (when he was unemployed after Adam was born) as his boss wanted to learn guitar and so Dave taught him to play…

And yesterday his old boss sung many songs he had written during the bad times in his life (when we lost contact with him for the last 15 or so years after his first marriage broke down) ... To me it seemed like the music saved him - he could express his pain through writing music. 

So Dave being employed by him and teaching him guitar might just have saved his life too!