Travellers and the Power of the Media

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

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

The hate and ethnic racism in the community shocked me. 

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

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

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

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

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

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

My thoughts are this:

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

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

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

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

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

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

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

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

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

Struggle, and ‘Which wolf will I feed’?

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

 “Don’t let your struggle become your reality”

 

Struggling with it!!!🤣

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

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

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

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

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

‘The woman who had the brain tumour.’

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

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

This quote pops into my head…

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

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

I need to feed the positive side.

💖

Tough Days

Today I didn’t wake up until 10.15, but I still felt shattered, had blurry eyes and no energy. After half an hour or so of laying in bed I finally got up, had a shower and made some breakfast (even if it was past 11 am!) I am sitting eating it and just feel awful. I feel blurry inside. Like I have not slept all night and have a hangover. (If I remember the feeling of a hangover correctly- I haven’t drunk any alcohol for well over 25 years!) 

I feel wobbly - but I am not wobbling, off balance - but not falling… just bleugh!

I try and continue with being vaguely productive, even if it’s just basic household tasks and making lunch, yet at about 2 pm I give up. I feel I’ve spent the whole day so far just trying to pull myself together and yet I need to sleep as I am not working correctly. I go to bed, put on my Vitali- Chi machine and crash. 

I wake an hour later and feel calmer inside. I still don’t want to move and so don’t for almost another hour. After a while I play some Sudoku games while still laying down to wake up my brain and end up staying upstairs until 5pm!

Downstairs I try and sort some urgent paperwork out and look on my laptop for information I need, but the laptop not working properly, and neither is my brain, I cant work out how to sort it out. I can’t cope today and I just want to cry.

Dave cooks and I eat dinner gratefully – feeling totally bloody useless – I have slept most of the day and I still cannot function enough to cook! 

I feel a waste of space, both for my family and myself.

After dinner I decide to cut some of the bushes back in the garden. Dave asks me why and I tell him I need to do ‘something’ productive today, even if it’s just cutting plants.

I give myself a long soak in the bath afterwards and go to bed with my note book. I need to write. 

People look at me or read something I have written and assume all is OK. 

But it’s not. 

If I didn’t have the option to sleep in the day and have my meals cooked I don’t think I could cope.

My tumour is out, my scan was OK, I don’t have any ‘long term’ or ‘severe’ problems. It’s over 2 years ago and so society says I should have ‘healed’ and got over it by now. Yet some days are just really bloody hard. Trying to continue. Trying to forget how I feel, when I don’t feel ‘right’. Having a panic as I wobble. Trying to refocus. Trying not to wobble or drop things. Trying to remember the correct words. Trying not to break down in tears. Desperately wanting to go back to sleep. Struggling to coordinate my thoughts and actions. 

Wondering what I did wrong. 

Did I deserve this? 

Do I do things to make it worse? 

I don’t know.

But today is tough. Damn tough.

Anniversary Musings

It's our 21st wedding anniversary today!!... and Dave asked me earlier what i felt on Facebook - and this was my reply.

I feel …

… A little old. My parents are the ones who can be old enough to be married 21 years! Not us! 

 💜

... Confused . I wonder where the time has gone. It doesn't seem 21 years ago. 

What happened to that girl ?  

🤔 💜

... Sad. As 5 of the much loved people that were at our tiny wedding ceremony are no longer here with us.

 😢 💜

... Grateful. Fucking grateful to Mr Jones and St Georges Hospital for allowing me still to be here today. 

💕 💜 💕 🙏 👼

... Amazed. That from all the shit we have been through we are still together.

 💜

... Defiant. And a ‘fingers up’ to all that didn't think we would stay together 21 weeks. 

💜

... Proud. That we have the 4 most amazing children. That we created. 

💗  💜

... A bit useless. As I know others think I haven't done anything with my life.

🤔 💜

... Rebellious. As I don't really give a fuck what others think. 

😘 💜

... Intuitive. As that somehow I knew 26 years ago that we had to be together - you and I are our biggest mirrors and lessons in life.  

💜

I love you  😘 

(though I'd love you even more if you'd listen to me  😂 😘 💜)

Art and a Wobbly Brain

Today these pictures pop up in my Facebook news feed. 
Memories of 2011. 

When I could paint.

I have always loved copying art work and did these paintings for a friend. I loved it, getting paid to have fun and what felt like a skilled accomplishment. But today it just brings up some pretty strong and horrid emotions. I just cannot paint like this at the moment. 

My brain simply cannot do it and it’s so damn depressing!

I first felt like I was struggling badly with my art in 2015. I had tried copying some simple art work, and couldn't do it properly so made the images more abstract and a bit rougher. I think looking back I had been finding things slowly getting tougher than normal before this, but thought it was as I was doing things slightly different to my usual. 

I had assumed I was going long sighted and needed some glasses. So went to the optician. I didn’t.

Clearly my brain tumour was causing issues with my eyes and coordination long before it was unmissable in the rest of me…

 
I have painted some abstracts painting since my tumour was removed, but even over two years later my fine detail is still awful.  I cannot even colour easily in between lines of colouring books and certainly not well consistently. 

So today I just sit and sob that I should have done more art years ago- but I didn’t. 
Maybe life got in the way as I let it? 
Maybe I was too scared to fail? 
Maybe I knew inside that I would get a tumour and if art had been my living, the ability would have been destroyed - and with it, me?

But it’s still shite. My kids are almost all grown, three of them are adults, only my youngest needs me as much. There is time for me now and this time should be increasing, time for my art – and right now it feels it’s no longer there. I find it hard on so many levels. Down to the fact that I cannot just go and paint and experience the bliss I once had. The satisfaction.

As it was I chose to have my kids when I was young and my ‘career’ was never a consideration. When I sit and really allow my tears and feeling, I am so glad in so many ways as ‘if’ I had a career and waited until I was older to have children it might never have happened. 

Plus if after surgery I had young children I think it would have destroyed me and my family. 

Personally I would never risk having another child after a brain tumour. I couldn’t knowingly bring a child into this world and then possibly not be there for it. Plus how much of an extra risk would it put on my body? 

So I guess, given the two options – kids or career, I chose the best. It helps me accept my reality slightly more.

Although I didn’t choose my brain tumour, I didn’t choose it to affect my vision and coordination, to affect the thing I wanted to do in my future. I know I might still be able to do something art-wise but different to what I always hoped and planned. 

Today it’s hard to accept.

Vestibular Neuritis and Explanations

On Tuesday I woke at 3 am to a nightmare, that I was dizzily spinning violently. I lay there in the dark telling myself it was just a nightmare, until I woke again at 6 am doing the same thing, this time I could see the bedroom and the swirling vision that accompanied it. 

Dave asked me what was up and I said I went madly dizzy when I moved my head, and as I showed him how, I felt like I was on a horrid swirling fairground ride! 

Just like when I first sat up after having my tumour removed. 
Oh hell!

A phone call to the hospital’s neurology department said there was no one there to talk to and I would need to go to A&E. So still wobbling (although the violent spinning had stopped) I get dressed, and Dave drives us back to St George’s. 

I feel totally nauseous, probably partly as I woke up so fast, partly as I am panicking as to what the hell this could be (and have all sorts of brain surgery worries running through my head) and partly as the spinning causes the nausea. I am sitting in the car unable to stop myself shaking and my leg moving, then stop myself retching and eventually throwing up! (Thankfully I’d not eaten since the evening before.) 

We get out the car and I have to do the arm in arm walk that I have done far too many times at this hospital, the memories and fears are all flooding back big time. Please let it not be my brain tumour or site causing problems… 🙏

A couple of hours later, after blood tests etc, we finally see a Doctor who does various neurological testing and says it is unlikely to be my tumour or surgery causing the problems, but in fact my inner ear! Vestibular Neuritis. 

The last MRI I had was only 6 weeks ago and there was no sign of the tumour reoccurrence or any issues showing such as raised craniosacral fluid, and it would be VERY unlikely anything changed since then, plus my neurological tests are all fine. 

He says they are waiting for my blood tests results which would show if I had any bacterial infection, but as my ears look ok and I have not had any pain, he said it is probably viral and tells me he will be back when the blood tests are through. 

In this time a nurse kindly asks for a urine sample and my permission to do a pregnancy test!… I go back to the cubicle laughing at the possibility and Dave deciding that a pregnancy is as terrifying as a problem with my head! I totally agree!

The doctor comes back a while later, saying my bloods were all fine, with no sign of any infection and I query with him could it have been a type of seizure or anything (I have not had one, I don't know what they feel like) and he says no - seizures don’t ever just cause dizziness, plus Dave tells me I was talking to him throughout. 

Also two years after my surgery (especially with everything looking fine on the scans) it would be very very unlikely to suddenly cause a problem.

As I then questioned it saying ‘It just felt too similar. The only time I have spun as violently as that or felt so dizzy is after the surgery and especially as my neck muscles are so tight at the moment it made me scared that something was wrong.’ 

I then added that the neck muscles didn’t feel that different to what they have done since my op, but they have ‘constantly been tight today, like I have a board inserted down my neck’ and he said “Is it as they explained after surgery what your side effects would be?” … um no… no one explained anything!

We were then given a discharge letter plus the choice of tablets (no thanks) which he said wouldn’t shorten the illness, just possibly help with the dizziness and nausea (double no thanks! - I don’t manage drugs well and even paracetamol make me feel sick) and so went home without them, still wobbly, but slightly less panicky.

It is now two days later and I haven’t had anywhere near such violent spins, but have felt my vision spinning gently since, especially after I sit up or look at screens too long, and had 48 hours worth of nausea (sea bands, ginger tea and homeopathy helped) plus still feel a bit wobbly when I walk or turn… but I guess I have got used to that over the last two years!

But what is getting to me is the fact he said:

“Weren’t you told about side effects after surgery?”

I had also seen similar a couple of weeks ago on a brain tumour support group Facebook page, when someone questioned when was I seen after my craniotomy. Now I did see the neurosurgeon 3 weeks after, when my neck was swollen (as urgent - checking to see if I had too much fluid on my brain), and again as a routine follow up at 3 months. 

Had a few neuro-physio sessions 2-4 months after surgery - but she could not advise me on anything to do with my side effects or surgery - apart from the balance side of it, and I saw the Genetics team to follow up if I had VHL (plus scans, blood tests, eyes tests.) 

But nothing about how I was, how I was coping, how I was healing, when to do things or what I should avoid, what side effects were normal, ideas on coping with agonising healing neck muscles, getting over the trauma of major surgery, help with our finances - or anything… 
basically we left the hospital 48 hours after surgery and Dave was my (unqualified) nurse, with my kids some kind of (also unpaid and unqualified) care assistants!! 


I didn't even get a leaflet with charity support lines to possibly help me…

After my 6 month scan, I wanted to see the results, ask some questions. I didn’t really know why I had a large deep hole at the front of my head, nor how big the plate was, were the various feelings and numbness ok, what were the chances of it ever coming back, if the dent in my neck muscles could be improved, or even were any of my neck muscles actually removed during surgery? 

I had emailed several questions to the surgeons secretary in December 2016 just after I received my scan results, but it took until August 2017 to actually see him and get the answers!! 

I kept saying it doesn't have to be Tim Jones, but anyone who can answer the questions for me, and I am happy to be emailed, written to, called or see them in person - whatever is best - but I would like to speak to someone please.

8 months is a long time without any answers! 

Although in the end by the time I got there I pretty much knew what many of the answers would be, as I knew what side effects I was still getting and so time had answered for me.

 ⇎⇎⇎

This was why I had started writing… I had no one to get these answers from, so I just started writing to myself to help release the trauma and emotions I was having. 

If I had seen a nurse or therapist maybe I would never have got to question myself? Plus there was a very strong drive to write things down so that no one who has to go through similar in the future should have to go it alone… it may be a benign, once removed tumour with no serious side effects, but I still had a craniotomy! 

Someone was ‘playing’ with my brain for a while! 

I still have side effects daily. 

And it is still singularly the most stressful, painful, emotional, exhausting, damaging thing I have ever experienced, compounded by not knowing what I should tell my kids or if I’d even come out of it alive and unscathed.

Many of my blog posts are written as I still see people asking on various online support groups these similar questions, I see them being reassured and less fearful by knowledge and support, yet other people are providing this for free. 

As I asked before, why isn’t there a craniotomy support nurse and a counsellor available for all patients after brain surgery? 



Not just those who have cancer or ongoing problems? (Although from what I have read online it doesn't even seem all cancer patients have this support!) Why if the hospitals cannot provide this do they not at least give out the contact details of the various brain tumour support groups?

It needs to change… 
Anything will be a start… 
Please… 
You cannot just send people home to get on with it… 

Facing Brain Surgery - Yet Hair Still Matters!

One of my (possibly totally illogical) fears when I knew I would have to have brain surgery was would they shave a large part of my head. I know hair grows back, and it really is a minor part of all that is being done, but I have always had long hair and it’s felt ‘a part of me’ for a very long time. 

Thinking you might lose it is not something I wanted to face on top of everything else, when I was already feeling extremely vulnerable and didn’t want the world to know I was having brain surgery. 

Plus my hair hides a multiple of things - and it is probably my defining feature. If it had to be done then I would just have to face it, but I remember asking on a brain tumour group if it was likely they would shave much, as I needed to know. 

As to cut it all off would be a bit like saying I was going to lose a limb - lose a big part of me - and I would need to ‘get my head around it’! Thankfully they told me that the surgeons normally just shave a small amount either side of where they will cut and minimise any hair loss.

I guess part of my fear of losing my hair was also a memory I had. Recalled vividly while wondering why I had just been called to go back to the consultant to find the results on the same afternoon I had my MRI. Terrified as to what ‘problem’ they had obviously found. 

In the drive back to the hospital I just repeatedly had a vision of me as a young child walking up the front footpath to my house with my Nan walking behind me admiring my curly red hair saying:

“Is this what I have - a brain tumour? Did she know what would happen? Why on earth did she say this? Am I really going to have my hair cut off?”

I know I was also scared I had Multiple Sclerosis or some other degenerative brain disease, but somehow inside I knew it was a tumour even then. This was going to have to happen…just like my Nan predicted…😨

I really wasn’t ready to have my hair cut off, but had looked online at ‘back cuts’ before surgery, where they all but shave the back part, near your neck (where I knew my cut would be) so I could keep the top long, this seemed bearable, but how would I predict how much of the area would be shaved in surgery? 

In the end I decided to leave it until after the operation - partly helped by feeling so ill and not sure I could face the hairdressers, let alone having to wash my hair there and bend my neck over the bowl. 

My neurosurgeon said he was planning to make a straight cut up the centre back of my head, and would leave as much of my hair as possible -  I could have a back cut after.

As it was he didn't cut a straight line, I have a bump on the centre back of my head which he said wouldn't have been the easiest place to put a plate over afterwards. So I had a S shaped scar instead, starting at my neck and going towards my right ear. 

I also didn't realise I would be getting a fair sized amount of hair removed at the front of my head - for where the drainage tube would be inserted during and after surgery.

Here are my pictures just after surgery. As you can see the surgeon only shaved a minimal amount of hair for the size of the cuts.

Just before surgery I had tied my hair up in a top knot ponytail, assuming they would leave it tied up out the way and still be able to access my head. But clearly this didn’t work as after my hair was simply a glued mess! I looked at myself and thought I looked like a witch, who knows what others thought? It certainly made me look like I had just had brain surgery! 😁

This was the attractive mess I woke to the next morning, and the back of my hair was glued together in a lump, not tied up! The glue gradually unglued itself, but not enough to brush it or even tie it up again neatly.

When I was discharged 2 days after the surgery, Dave and I were told that I could wash my hair from the next day, but he had to do so very carefully for only a short time, avoiding rubbing my head at all and using gentle shampoo. (I only use Faith in Nature shampoo - which does not have SLS as this irritates my scalp and this was brilliant) 

We were also warned that it would take a couple of attempts at washing to get all the glue out. 

What we were not told was that when Dave washed it, huge clumps of hair that they had obviously shaved during surgery would also fall out with the glue!

I had only felt up to attempting to wash it 2 days after I left hospital, even then I wasn’t able to muster the energy to lift my hands for long enough to wash it myself , was disgusted with how fake and ‘wrong’ my head felt, terrified I would damage a staple or something as I couldn't see what I was doing. 

So I sat in a shallow warm bath (I was told not to soak the scar in water) while Dave showered and washed my hair. It oddly felt like a test to see how I could cope, my husband having to nurse me, but one that I knew I wasn't allowed to fail. 

I managed a few minutes, then these clumps of hair fell out - maybe each only a few centimetres patch from where they shaved me- but my hair was well over 30 cms long! So the amount that fell out seemed extreme. Huge horrid clumps I couldn't feel. 

It felt like he was touching a wig attached to me, not my own hair. I felt sick and cried. I also hated it when Dave touched my head, I knew he was touching it, but I couldn't feel it properly. 

I kept asking him how much glue was on my scalp and he said only a little, yet I felt like I had a centimetre thick layer of papier-mâché on it. 

(It would take me another 3 weeks to find out that the main occipital nerve was cut in my neck, and my head would be staying numb) 

Plus I felt insanely dizzy, so all I managed was to sit there with my eyes mostly shut, trying to hold it all together while crying stupidly. 

After all the clumps of hair and most of the glue had fallen out, I said that was enough and Dave put a towel on my head, helped me out the bath and found me clothes. He then had to gently dry my hair while I felt I could barely stay sitting upright much less hold the hairdryer to my head. I normally dry my hair with my head upside down, but I couldn’t bend my neck from the pain, so he partly left the roots damp as I couldn’t cope with any more. 

My daughter put my hair in a plait, trying to cover as much of the scars as possible (my 9 year old hated seeing them!) And it stayed like that for a couple of days.

This picture above was taken on the 26th May, 8 days after surgery (when my neck muscles really hurt- excuse my face!)

The picture below was taken on the 30th July - 2 months after surgery

But as you can see even then the scars were hardly visible within the rest of my hair.

In the end I decided against the shaved back cut, due to my scar not being only in the centre at the back and having to shave a too bigger area. 

But several months later (even after I had got over the fact I would always have a numb side to my head) each time I touched a patch of my hair, or it got caught slightly in my handbag shoulder strap, or I moved my hair at the back.

I had this horrid sensation that I was touching a wig as my hair did not feel connected to my head. 


Plus it also triggered me far too much in being able to feel the numbness without actually touching my head. Which most of the time I couldn't now feel unless I was either in a cold wind or I touched it. 

I also had the added annoyance that I mostly tied my hair up - but if I leant on a hair clip it felt like my whole skull had a metal plate inserted in it! I hoped that if I got it cut, by the time it grew back I would have either got a bit more feeling back or just get used to this numb feeling - which I would hopefully get used to better as my hair grew again. 

I also hated the tufty bit of hair at the front of my head, which as I tied the rest of the top of my hair up- stuck out as it couldn’t be tied.

So in October 2016 - 5 months after surgery -  I got the back of my hair cut to the same length as the parts that were shaved. I simultaneously hated it (I wasn’t me!) But loved it as it did exactly what I wanted - it stopped me constantly feeling the numbness.

Two years later and my hair length is almost back where it was, although I have chosen to keep the top shorter so I don't need to tie it up - it doesn't get in my way, and I still don’t like leaning on hair clips. 

I actually measured my hair length 2 years to the day after surgery and it was 13 inches!! - apparently 12 inches is the average growth rate for 2 years. I am back to being ‘me’!

I also feel the numbness far less, I think the area I cannot feel is only a tiny bit smaller when I touch it than it was before my haircut, but I normally cannot touch my hair and feel the wig sensation. I think my body just doesn’t respond to the feelings the same now. So the haircut idea did as I wanted!😊

I also read the book ‘Do No Harm’ by Henry Marsh recently. One page which really stuck out about shaving hair was: 

“There is no evidence that the complete head shave we did in the past, which made the patients look like convicts, had any effect on infection rates, which had been the ostensible reason for doing them. I suspect the real - albeit unconscious - reason was that dehumanising the patients made it easier for the surgeons to operate.”

I am glad our surgeons now realise we are human! 💗