Photo memories ...

I was talking to Dave, my husband, recently about photos. That he has so many pictures of me that are totally unflattering - mainly as for some reason I tend to look as pissed as a fart in about 90% of the pictures anyone takes of me 🙄🤣 Even though I don't drink and am sometimes the only sober person in the shot, I tend to look the worst! 😬

 

He has photos of me that to many would be blackmail material ...countless double chins, or in a bikini, walking around in my undies, or bending over or some similar, not so flattering, and often rather wrinkly, angles.

 

But I just laugh at them, at me, as I honestly don't care. 

 

Why? 

 

As after this photo everything changed.

 

He took this photo of me 7 years ago today - the day before my brain surgery was due. We had just been told, that bar emergencies, I was having my surgery at noon the next day. 

 

As he took the photo, of me holding the matching fluffy toy rabbit to my 9year old son's one at home, whilst trying to type to friends online to hold me in their healing thoughts and prayers for tomorrow (it wasnt easy with vision affected by hydrocephalus); I was just sitting there wondering if this would be my last ever photo? Or maybe the last one of me ever being 'even vaguely normal' again? Would I forever be struggling, a burden to my family?

 

I was terrified. Possibly more terrified of waking up not fully with it or severely disabled and having to rely on others, than I was of not waking up at all. 

So when I woke up, while being wheeled out of the theatre 6.5 hours after entering it, seemingly intact, able to talk, then over the next day seemingly recovering as was expected, being able to walk (better than I had for months 🙏) yet still feeling as drunk as a skunk and struggling with it and the constant visual movement. All that mattered is that I had survived, plus had the hope that I would recover to something like a 'normal' life... 

 

I realised - nothing trivial mattered anymore.

 

These pictures are from the day following surgery,  the first when I was still in special care and wired up, with a drainage tube directly into my skull! But the relief is showing...along with actually looking like I struggling from having my head opened up for a few hours!! 😬😂

 

 

And with these pictures, what I did know, is how I thought I looked didn't matter one iota. 

 

It doesn't matter what others think of me, but what I think of myself and at that moment I had just love. I knew I needed to love myself, accept myself, trust myself...and life. Something I wasn't that good at doing.

 

I no longer cared if someone thought me ugly, wrinkly, grumpy, or anything... 

I knew right then I was totally unfit, looked like shit, had no energy, my face showing the trauma I'd just been through, totally at my worst... but I didn't care. 

 

I was alive. 

 

I was human and having a normal human response... So does anything else matter?

 

Many others are too scared to show their own humanity, and hide it under a veil of make up and fakeness... But why? 

 

Why do we all have to pretend? 

 

Pretend that we are skinnier, more toned, more beautiful, have the perfect pout or whatever...  just not actually being yourself. 

 

Like what the fuck is a filter about?! 🤔😂 To pretend you're 20 again? Hey, fuck it, I'm 50 next year, and I'm happy if I've got a few white hairs and wrinkles... It's better than not getting this old. My life could so easily have stopped at 42...

The last few months before these pictures were taken had shown me I could no longer pretend at all (not that I've ever dyed my hair, had my nails done or gone to a beautician!) I'd been reduced to being totally dependent on someone else to look after me, then more to save my life. (Not even able to see the mirror even if I wanted makeup. Although it would have soon been smudged all round my face from tears anyway!) What good was looking nice to please others? Absolutely fucking nothing! 

 

So, as long as no one is violating or ridiculing me ... You see what you get and post what you want. (and if you do want to ridicule, take a long look in the mirror first and work out why you feel its acceptable to laugh at others? Does it make you feel a better person as you actually feel worthless yourself? 🤔)

And yes, sometimes I do put on make up and dress up... I even have been trying to make myself fitter by going to the outside gym daily... But thats a whole different story.

7 years.

Yet it seems like it was only a year or so ago, but also forever, at the same time. 

 

Thanks again Tim 💖✨

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.

 

💖💖💖💖💖

Sanity Amongst Madness

This it what has kept me going the past few months...

 

 

Nature

in my garden!

 

 

Watching Bee's...

 

...and the spiders eating them.

Appreciating the flowers...

and the sparrow's, and occasionally other birds, on our bird-feeder.

        

 

For a garden that, for decades, never had more than a passing pigeon or robin until only a few years ago; finding about 25 sparrows around the bird feeders is amazing. 

When the world outside our house has never been so insane,

 it's been calming to just sit and watch.

 

From the various bees, wasps, butterflies, dragonflies, damselflies, moths, grasshoppers & spiders to the fluffy fledglings being guided when it was safe to land (normally when our dog wasn't in the garden) and now seeing SO many more birds than ever before. Some even trusting me enough to continue feeding even when I am only a few metres away, one hungry pigeon still feeding whilst my son tipped the bird feeder towards him as he couldn't quite reach! 

Anyway... even while this year has been awful in SO many ways, masks everywhere being the final straw, this summer has been lovely in both weather (no planes!) and nature. 🌞

 

It has been my sanity amongst madness. 💜

© Pictures all copyrighted to Jo Barlow

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Scan Results...

 

 

"MRI scan looks excellent with no evidence of any residual tumour"

💗🙏💗🙏💗🙏💗🙏💗

"I am extremely confident, therefore, that your tumour is exceptionally unlikely to recur, 

however as per the genetics clinic advice I will arrange for you to have a follow up scan in five years time."

 

 

No words, but I'm sitting here laughing and crying at once!  

 

 

 

 

 

 

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A Very Quiet Birthday

Two days ago it was my birthday 🎂 I ended up spending it at home with my family. No surprise there being that the country is on lock-down! 😁

On the surface there was no presents (as no one could get to the shops), no meal out and I couldn't even get a takeaway of food I wanted.

Last Saturday evening also should have been having a birthday gig with my husband and son's band. It is the singer's birthday the day before mine so last year it was a fun event. Nothing pressured, just an enjoyable evening. But this year everything is on stop...

So instead I got a nice home cooked meal and my son making me a really tasty gluten free birthday cake. (Believe me tasty gluten free cake is a task in itself!) Nothing else different from any other day.

Apart from their presence in the present -

which I guess is the best type!! 💜

But then I never much liked my birthday, I hate people fussing over me as they are 'supposed to' rather than they 'want to' (Just to let you know - any other day of the year and I am up for treats!) and I am not the artificial huggy, kissy type. If you get a hug it's as I mean it, and care. We even chose to get married abroad as I didn't want a wedding what feels to me a fake, and expensive, parade.😬 So I guess 'nothing' doesn't upset me too much?! Not much different to lock down being quite like our normal daily lifestyle...

But I did get a birthday spent outside in the garden, with blue sky and no 'plane lines' (even if it wasn't as sunny as the day before.) The loudest noise for most of the day the birds nesting in the bird box in my garden, rather than the constant volume of traffic driving past, the constant line of planes in the sky or the rumble of a transporter dropping off cars to the garage nearby, or people revving engines. I spent much of the day planting seeds and sorting pots for growing veggies in what felt a far better environment than usual.

Plus, as it has rained in the night, when we went for a walk that morning the trees outside had dropped their white pollen, so it was like I had a layer of natures confetti at my doorstep, all down the road and at the park instead. Nature celebrated quietly with me.💜

And... for some reason, I still find the date of my brain surgery, my cranioversary, more of a celebration of still living than my birthday. Maybe as not many have a cranioversary day, or a second chance at life, it's a bit more special?







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How Others Stories Heal

Over the Christmas holidays I read a few things that really made me appreciate how others who have been in the same place you are, or were, are possibly the only people who really understand your experience.

How they can often explain in a way that you have not yet been able to voice, or even consciously accept - much less release.

Their words just holding your soul.

Both of these posts were the turning point on my decision to continue writing this blog again... (after being told I was prolonging acceptance in doing so!)

So two posts I want to share with you, - with the writers full permission. 

One was on helping someone else struggling with anxiety, after their brain tumour, and the daily struggle that ensues. Something that the 'pull yourself together' or 'just take a drug' brigade don't understand, in fact I don't think many can understand unless they have either been there themselves or watched a loved one struggle.

"I used to have really severe social anxiety to the point I didn't leave the house. I made a list of the things that scared me and then starting with the most easy I would try one by one. Going the shop was scary as I'd have a panic attacks and I would cry and have to ask my Mum to use my card and pay for me, or getting the bus would make me cry and run away. But the fact I was still trying it, made me take it as a win. 

Then over the years everything got that bit easier and easier. It has taken about 6 years for me to finally be 'normal' again but it is do-able 😊. As for the seizures I found mine was triggered by stress. But I also learnt that while having a seizure my heart rate with shoot up soooo fast, so I would learn how to try keep calm and breath and as my heart rate came down the seizure would be less severe and would end quicker. Obviously you will have times you just can't do this but it's definitely something to keep in mind 😊

Also with the depression I've learnt either writing down how I feel or speaking to a counselor or just someone who you don't really know is a massive help just being able to offload. I still have my days with my personality disorder, but it's okay to have bad days where you just sit and cry and sleep. It's picking yourself back up again what is important." - Beth Parker

How explaining and others listening, supporting, guiding with kindness and love really can help, but that often we just have to love ourselves more too. Not judge our bad days, or think that we are weak, stupid or wrong. Treat ourselves as kindly as we would a good friend.

One of the hardest feelings in the world is feeling alone -

 even when you are in a room full of people 😔

⬌⬌⬌⬌

The other post was of someone who had just returned home after his (elective) surgery to remove his cerebellar Hemangioblastoma (which was thankfully caught early and still quite small - before too many symptoms appeared) and had been seeking advice on my support group.

"First memory was coming too and in recovery. Lots of simple questions: Do you know who you are, where you are, what day it is, etc. So happy I did and felt my brain working but I had no voice as hard I tried. They said it was the anesthesia still in me. Finally could whisper and use hand signals. Dr. Patel came in and said I did great and it only took 3 hours. CT looks like everything is out. It most definitely was a Hemangioblastoma and profiles benign. Couldn’t sleep all night but relieved and did simple moves and stretches in bed. Good to be alive and recovery is going great. So appreciate the small things and focused on not overdoing it. I realize everyone is in different spots with this challenge. I appreciate you all and draw from your stories and strength!

Speech is great. A little sticky for first 48 hours and my mind was actually going faster than my ability to get words out. I think it was the drugs but I could not help cracking jokes to almost everyone. Also my sense of relief that my brain was in tact. Tired so fast though and my flashes of energy quickly overcome by fatigue.

I didn’t realize how much stress and dread I was carrying until I finally was brought back and knew my brain was working. It was looking at a clock in recovery and figuring out how long I’d been out, then moving my feet, feeling my brain waves fire up to know simple questions even though I couldn’t get my voice out for a few. It’s quite a surrender, courage and act of trust/faith to do this. I know I had a choice of delay and so far feel blessed by my decision and your support. Thanks Jo and all!" - Brian Gilmore

I just cried when I read this, yes some were tears of recollecting almost the exact same thoughts:

'Did my brain still work? Could I move my body? 

Did it all go OK during surgery and was the tumour all out?'

So yes neuropsychologist woman, you are right it 'brings it back'...



... but what it also brings back is a memory of the sense of gratitude, relief, strength and that overwhelming knowledge I'd survived, the belief that even a few deficits would be an acceptable trade for being alive. The reminder that small things we worry about daily, just don't really matter in the scheme of things. Where I could see the beauty in even run down old buildings as I went home... 

https://www.facebook.com/BrownnCares/

The 'surrender, courage and act of trust/faith to do this' and how those emotions and feelings never truly leave you. How they give you strength forever.

Plus some added acceptance, understanding and knowing of just how far I have come since then. The knowing that others have faced the same, will continue to face the same and being part of a tribe that understands you.

Tinged with a huge happiness that the support I (and others) had given, the words I had written, had impacted someone else's life for the better. Made a really tough time for them just that little bit easier in having the support I never had. 

So yes. 
No one does really understands it unless they have been though it themselves. 

💜

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Accepting Myself after Brain Surgery

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

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

 

It has so helped me feel better about myself 💜

 

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

 

 

On lots of these I don't have much. 

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

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

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


Accept the 'new me'.

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

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

So what if I sometimes get the word wrong, 

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

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

Heck I was born with red hair 

... I was born to be 'me' 

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

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

so why am I taming and changing myself now? 

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

To be me. 

The full unabridged version of me.

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

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




.

It's a LONG Recovery...

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

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

It never felt right though.

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

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

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

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

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

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

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

I was wasting away. 

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

This picture was taken on the 15th May, 

the day before I went to hospital. 

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

I had so little energy.

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

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

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

 

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

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

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

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

I felt muscles in my arms!😂

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

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

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

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

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









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Beaches and Castles

Last weekend was busy. We went to Littlehampton to see my aunt and family and have a bit of a break. 

We had a quick trip to the beach on Friday, and for the first time since last October I was back on a beach. 😊😍 Though this time it was 1000x better as I was bare footed and warm, instead of cold from the rain and wind. It was so calming, even if we weren't able to stay there for very long that evening.

On Saturday I went to Arundel castle with my husband and son to watch their battle reenactment event, as well as looking around the castle and climbing the keep. 

I have no idea how many tiny, narrow, curving steps we climbed, but I was very impressed with how much my balance and coordination had improved as many of these steps were extremely steep, irregular and worn - yet not once did I trip!

Believe me that after once not being able to do this (or even walk in a corridor without walking into walls, or generally bumping into people) - 

I was very appreciative that I could now do so. 

I also managed to climb to the top of the keep, take pictures and look down - without my legs going weak at the knees, wobbling or feeling sick! 😁 Again a very strange experience as I have never liked heights... I am the sort of person who can wobble standing on a chair as it's too high 😵 😂 Yet here I was several stories up, even on wooden plank flooring that I could see through, and not only did I feel fine I was able to take photos!😲

Although with this climb, and afterwards walking around the tents, up and down the slopes looking at the various stalls, I did feel a bit shattered. Yet I simultaneously also realised that it was about 30 degrees and everyone else wanted to sit in the shade too.😁 But I felt normal. For the first time in over 3 years I felt 'me' again. 💖

In fact I felt better than the 'fatigued normal' I had been used to from long before my op. As I never would have been able to do this for a few years before I knew a thing about the tumour...

💖

That evening I also managed to beat Roan at a game of pool, plus play (a newbie version) of table tennis for 10 minutes. I don't catch balls. I cannot coordinate. Yet I managed to hit it most of the time and even catch the ball in my left hand if I felt I couldn't hit it. 😲 I decided my left hand was far better at catching than my right side. Although I am right handed my tumour was in my right cerebellum which (unlike the rest of the brain) links to the right side of the body, and well - I have a gap or two in my brain. 😂

A couple of days later, and despite bank holiday traffic chaos trying to stop us getting a parking space, we were able to get back to park near the beach. We had decided to go to a boating lake where they had pedalos. It had seemed like a good idea until I realised how hard they were to actually pedal 😂 but clearly using the reclining bike at the local outside gym had helped as I managed our allocated 30 minutes with my legs only feeling slightly achy after! Even if we did occasionally let the boat float gently for a few seconds.

But.... I went on a boat!!! Me... on a boat. 😲😁 Yes it was on a lake and not the sea, but (again rather pathetically) I used to feel nauseous floating on a lilo in an empty swimming pool. 😂 Yet not once did I feel nausea or wobbly or anything. Just how much had my tumour unknowingly been affecting me for years?

After this we then went to the seafront, where to Roan's amazement, the tide was out. So there were several metres of sand to walk on, and a very shallow sea for quite a distance.
Putting my feet in the stones, sand and sea - just grounding in nature.

And the sun was gorgeous.

It actually felt like being on holiday. 

Bliss.💙💖💙💖💙

I need to do this more often. 

I need to feel nature. 

I crave the calm and the peace...

I so want to move from the constant reminder of having a brain tumour. 

Somewhere I can reconnect with the earth. 

Reconnect with me. 

💗





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My interview with Aunty M Brain Tumours

Six months ago I had an interview with Aunty M Brain Tumours. 😊 Claire Bullimore, a brain tumor survivor in the U.K. interviewed me for her Brain Tumour stories.

Claire is a brain tumor support advocate, blogger, author, speaker, and social media guru, and also , like me, wanting to raise awareness of Brain Tumours.

Please take a look at her supportive information for others with Brain Tumours, read her story and like her Facebook page here.

I am sharing her info below:

Mother of 4 was Diagnosed with a Hemangioblastoma

 

 

Jo Barlow mother of 4 was diagnosed with a Hemangioblastoma in 2016.

After being given the frightening diagnosis that she had a Hemangioblastoma. Thankfully, after successful brain surgery, Jo is brain tumour free and there is no sign of reoccurrence.

But, that was not the end of her troubles. Jo was left with many side effects.

She decided to write her experience through a blog to share her journey with the ups and lows.

Here is Jo’s story

 

When were you diagnosed?

22^nd April 2016

How did you find out about your diagnosis?

After giving up with various appointments with the GP and only finally being referred to a neurologist on the 3^rd time of asking, the neurology appointment came through for over a month’s time. After a week or so of waiting and I was getting worse by the day, sat on the sofa unable to walk or move far, my husband called my parents who agreed to pay for me to see a private Dr as it seemed the NHS was not able to see me faster. Two minutes in the room with this consultant rheumatologist  (we thought it was possibly damaged in my neck as it started with neck pains and couldn’t turn my head etc) and him seeing me walk he suggested I needed an MRI due to a rare problem with the brain as I ‘was drunk when not drunk’. I had a private MRI 2 days later, came home and had lunch and got called back to see the doctor an hour or so later…I knew it wasn’t going to be good news!

I was sat down and I saw on his computer screen this large white lump on my MRI picture, clearly a tumour in my brain. I was told then the neuroradiologist was 99% sure it was a benign hemangioblastoma and could be removed with surgery…

What were your symptoms?

• Feeling dizzy, losing balance, walking into objects (or thinking I will) feeling like I was walking on a boat (looking drunk when sober!)
• Legs feeling wobbly and weak
• Neck pain- sharp shooting pains. Head pounding at the base of the skull. Hurting when I turned around too fast.
• Headaches gradually increasing, including them waking me at night (especially if I laid on my front or tipped my head up)
• Increased head pain and dizziness when I coughed or strained
• Tingling/numbness in my head and neck
• Squinting to focus straight, vision jolting
• Clumsy

 

‘It’s all in my head they said’

 

How are you doing now?

I had a tumour removed less than a month later on 18^th May 2016.

It’s been an interesting journey, my tumour is supposedly all out and fine, and I am not seen as having any further issues by my neurosurgeon. But I still have daily struggles – fatigue, feeling unbalanced, being uncoordinated, vision issues, a numb head, head pains and soreness, neck tightness, being able to say what I want- certainly I am not able to respond as quickly, speech issues when tired, memory, not being able to multitask now, brain fog- all made worse when I am tired. But I fully appreciate it could well have been a lot worse. It’s made me appreciate life more.

What motivates you?

Knowing I have and am still helping others, with my book, blog and facebook group

 

 

What is the toughest challenge survivors face?

Navigating medical beliefs, especially those that are not right for you and doing anything alternative – where you are just ridiculed.

Knowing that when people think you look OK on the outside they assume the inside must be OK too…

Overcoming the frustration … of needing sleep, not being able to say what you think, not being able to do things the same as before, of having to change so many plans.

What is next on your agenda?

Hopefully, reach more people and help them go through similar without so much fear, pain and anger. Showing honesty and not pretence.

You can connect with me on my Facebook Page and join my Facebook Group which is a group that is only for those with hemangioblastoma’s (or family)

 

 

My 12 yr old son is home educated, so I am always at home with him, but when I feel able to I have been updating my website and blog. Occasionally I do some art (now very much more abstract!) and also help my husband with his bands’.

I didn’t have a job to ‘go back to’, and I don’t think it would be easy to be employed knowing I have issues with so many things and they can vary by day, I never know what I will wake up to

.

Who is your personal hero or are your heroes?

Anita Moorjani – as her work got me through my craniotomy.

My neurosurgeon Timothy Jones – for the very same reason!

What would you say is the most interesting thing you’ve ever done?

I wrote a book and published it myself just 16 months after brain surgery!

My book is: ‘It’s all in my head’ 

available on Amazon – Check on Amazon

 

Any advice for people or loved ones that get daunting diagnoses?       

You can always choose how to respond- it can totally change how you view the situation. If you will remember it as a nightmare, or a challenge.

Take time to listen to what ‘you’ want and not just go with what others suggest or fear based panic.

Look at alternatives.

For loved ones – just hold the person when they need it-  and listen, help them find the answers they need.

Tell us something about yourself that people probably didn’t know… anything?

That I go to gigs almost every weekend. My husband plays the guitar and my son bass – in the same band!

It’s a good test to practice how I can always choose my feelings – I can find it too loud, irritating, panic and I cannot cope or I can sit back, relax, trust and enjoy the music

---

Conclusion

I am so grateful to Jo for sharing her story and I give a high-five for writing her story for others to benefit from. It is not easy to write a book which is so personal to a person and be so vulnerable to showing the good and the bad.

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Cranioversary Celebration!

Last night.

I have felt I needed to celebrate my 3-year cranioversary for over 6 months. It was still such an emotional time for me. Thinking about the events of 2016 still made me cry.

Then not receiving ‘confirmation’ from the Health Ombudsman that ‘the doctors were wrong’ nor getting a decent apology or paying me back for my private costs, still felt raw. 

Like they had gotten away with almost killing me, yet no one even cared. I wasn’t worth it. There was no justice, no closure, no moving on.

So - I wanted to somehow celebrate my ‘second birthday’ the day that meant I was able to live again. 

Do something to celebrate with others.

Organising a fundraiser for St George’s Hospital Charity and The Brain Tumour Charity seemed right - they had both been very much part of this journey.

This last month or so had been a struggle. I am sure my body had all the emotions of three years ago hidden and trapped in its cells. I had the same palpitations that I had before my op (and had these each anniversary after!) My neck I kept moving and then getting odd pains, my head ached strangely and then my scar areas just hurt. 

I even got a couple of colds with coughs that ‘pulled’ my body to accentuate all the head feelings, the aches, the nerve damage, the tension. A spot came up on the top my head to remind me of the pain - in the exact mirrored position of where my nerves were damaged and felt as sore. As well as feeling occasionally like I'd been hit by a bus from all the coughing, which again just  reminded me of 3 years ago with the emotional shock and aching from crying…

Each time a date passed when an ‘event’ happened my body would tell me, and I would re-read my book and match the dates exactly with something- the date I found out, the day I saw the neurosurgeon, the day I went to hospital etc.

Yesterday I read a Facebook memory- and just cried. 

The terror of waiting for my operation that day and that insane fear of walking into theatre…

Not knowing the outcome.

Then Dave saying ‘I’d done it’ as I was being wheeled out of theatre. 

The knowing I was OK.

The feelings were still so raw of what could have been, 

what was, how much it hurt.   

        

Organising this event partly distracted me, but also it felt like a celebration. 

A healing. 

Re-living.

For a while last night, I felt more than a bit overwhelmed. Trying to organise raffle prizes, balloons, banners. Then music starting, people talking to me. Selling raffle tickets… so for a while I escaped to the garden. Talking to friends and just reducing the amount of stuff going on in my head.

Then suddenly I walked back inside and was sitting next to another friend and I realised it was alright. 

I was having my ‘second birthday’ party, yet it wasn’t about me, it was about the charities.

I don’t even know if others even knew how much I was celebrating, but that was perfect.

I’d all but lost my voice, so couldn’t even talk very loudly or speak through the mic even if I wanted to, and I very much had to conserve my energy and words, or I'd start choking!  I was forced to slow my mouth down so it had to think before I spoke, and I said to a friend:

 “I have now celebrated my second birthday, 

my second chance at life and I feel I can let go of the painful emotions of it now, and just keep the good ones.” 

Suddenly I sat there realising I could celebrate it- the 'new' me... 

The new me was happier than the old one, more trusting, more appreciative... 

Even with the wobbly times, fatigue, tired speech etc… it was ME - and I was fucking proud of myself!

Yes, my soul had been injured, but it was finally healing - I was accepting all of what happened. 

Finding the lowest points mean I can really appreciate the better times.

My parents were there, my kids were all there. I was proud of each and every one of them. Others telling me how amazing the kids were. Feeling like I hadn’t fucked them up after all with having to cope with a mum with a sick brain…

And gratitude.

3 years ago I woke up after surgery knowing something different inside, something that changed me for ever.

And I am more than thankful.

💖💝💖

AND:

I raised £498.70 on the night and even more online - taking the total to an amazing £723.70!!
£371.70 to St George's Hospital Charity 💜
£352 to The Brain Tumour Charity 💜

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