Even shopping is tough.

I've had to go to the shops in Kingston twice this week. I hate it. The appointment today was for the optician, to change my glasses. I had taken over a month (since returning from our holiday) to feel able to phone them to book an appointment, even though my glasses were literally hurting my nose and several times I just wanted to throw the bloody things across the room! But I felt my brain was just too muddled for a phone call... I couldn't work out what that first sentence would be without confusing them or them having to ask me to 'say it again please'. (And yes this has happened many a time!)

But I'd been forced to make a phone call after I took my son shopping (only going to one shop, getting out of there ASAP) as we both needed new shoes. But at the till my mind went blank and I totally forgot the PIN, even on a couple of attempts. When the cashier said I had one last try, instead of trying again I decided to get my son to pay for one pair of shoes so I could just use my card contactless to pay for the others. But afterwards I was in a complete tizzy, my brain buzzing... I somehow managed to walk at lightning speed back to the car, weaving around people in a freakish manner. It was like slow motion where I just aimed for the gaps in the crowd, and somehow my coordination played ball! - I think from the adrenaline. My son telling me to slow down as he couldn't walk that fast behind me with a big bag of shoeboxes!😁

I got home and rationalized if I went on my internet banking I could try and enter the PIN to work the number out while I logged into the card reader (as I've done weekly since I got it with no previous issues.) But I again typed in the wrong PIN and it blocked my card... Hence the phone call (The PIN is still a blank... I've had to ask the bank for the number to be resent to me!) 

Anyway, after that phone call (which I had to call twice and get my husband to listen to which was the correct number to press as none of the categories were for 'I've forgotten my PIN' 🙄) I thought I *really* need to make this phone call to the opticians too.. so called and booked an appointment for Sunday. (I just said I needed to book to get my glasses looked at as they hurt me! - I didn't actually need to explain the confusion I'd had with emails etc)

So today...  I was tired and my brain felt full before we even went anywhere. I was also feeling agitated as I'd spent a fair bit of money on my glasses and didn't want to just be fobbed off. Plus I also had to return a pair of the shoes as the sole was awful - slippery and felt like polystyrene. (And no, I didn't know why my son didn't realise that in the shop?!) 

Dave drove and we managed to get to Kingston and into the car park fine, down a lift and to sports direct reasonably ok. (Although why a few plants in a large wooden planter in the middle of a concrete jungle had 'green spaces' on them was a little too much woke bullshit for my liking! 😁)

Dave couldn't see a pair of shoes he wanted either so we stood in the queue at the till, only to realise when I started looking around that there was a sign above us saying 'refunds upstairs' which we hadn't seen as had entered the queue from the side of the shop. 

Really helpful! 

 

So after waiting a few minutes for it to arrive, we get in the lift to see the shop has 3 floors, no label on the buttons as to which of the other floors is the refund area. 🙄 So Dave said "go to the top floor and make our way down" as it's easier walking down the stairs than up.

Level 3 was only a small area, with boxes piled outside the lift and in the walkways. Not only completely disability unfriendly, but actually dangerous. Not even a staff member in sight to move them. 

So down one flight of stairs, I have to super hold on the rails when the stairs turn corners, have odd lighting coming through them or stripes or patterns on the flooring, otherwise it sends my balance off. Plus, if I can't easily distinguish the step edge, I have to really take it slowly.

But on floor 2 we could vaguely see a till area so went to the other end of the shop... Yes, refunds! Although we instead got a credit voucher as they don't do actual refunds. Even the guy on the till agreed it's silly they say 'refunds upstairs' but not stating on which floor level.

Just going in this one shop and when crossing the road outside I am already feeling I need to double check for traffic as I'm feeling a bit unbalanced, ungrounded and might have missed something. 

So off to the opticians... But today my coordination wasn't playing ball and it was much tougher to try and avoid people walking the other way, or the cyclists that think it's fine to still cycle at speed on what (I assume?) was a cycle area too. (Although there were no visible signs that it was a shared cycle path - and the whole area is all paved in a similar way. These shared pedestrian/cycle lanes I hate and would avoid if I could) Even seeing a cyclist coming towards me is unbalancing, and I have to all but stop still so I don't wobble in their way as they pass. The faster they are, the more I feel like I'm going to wobble into them as I can't react in time.

The opticians appointment was fine, she heated the glasses to mold them slightly differently, so I hope they will no longer hurt my nose.🙏

She suggested we could wander round Kingston a bit and come back later if I felt they were still not right... But I replied "No, I need to go home". That was enough.

We walked back to the car park to find that the lift in the entrance we had used no longer has a ticket machine to pay, so we walked to another set of stairs, to find the ticket machine had gone from there too! To go to the third area and find they now only accept card payments, not cash, and 1 hour's parking costs £2! (No wonder people don't shop in stores anymore.)

The one flight of stairs to the next car level has a raised area on the floor at the top, I managed to hit it with my toes rather than trip up it, then the water laying on the car park floor was reflecting badly in the lighting above and rippling and flashing in my eyes as I was walking. I have to look the other way to stop it throwing me off balance. Again when going down the circular ramp of the exit I need to look down as my brain is not able to process the movement and speed of the car correctly.

If I was tired when I left home, I was certainly tired when I came home. I opened a packet of biscuits to have with a drink, put one on the side while I put the biscuit tin away, then promptly knocked it into the dogs (raw) food bowl.

That sort of sums my day up!

I'm exhausted and it's not yet lunch time. 

 

 

Cerebellum Survey Results

Here are the results from the cerebellum survey I asked on my Hemangioblastoma Brain Tumour group on Facebook.The results are only from those who had a cerebellar tumour (not from those with a tumour elsewhere) and the subsequent surgery to remove it.

When I copied these results 54 people had responded.

Q1

When was your tumour removed? (latest surgery if had more than one operation)

Q2

Do you struggle with these issues?

The answers to 'other' were:

-Headache and occasional vision blurring.
-Overwhelm, then essentially mental “shut down” when faced with more than 1 or 2 things (even  simple tasks) to do at a time.
-Balance.
-Balance to some extent - e.g. can't turn head quickly from left to right and vertigo-like sensations (whether up high or not)
-Horizontal vertigo randomly
-Phantosmia - I smell burning sometimes, cigarettes, or more commonly like candles. Balance is technically fine in “tests” by doc/physio but I can wobble all over the place some days.
-Inability to multitask.
-Cognitive issues - problems reading faces, hearing what's being spoken.
-Tinnitus, eyesight issues, tingling down the arms, pain passing from my forehead along my head to my neck, loss of movement
-Very poor balance and mobility issues. Need to use a walking aid when outside my home.
-Hyperacussis (increased sensitivity to sound and a low tolerance for environmental noise), anxiety.
-Right hand tremor/
-Hard to hear with multiple sources of sound when tired.

 

Q3

Do you have any of these functional issues?

Q4

Are you affected by any of these?

Q5

Have your symptoms changed over the time since your surgery?

Q6

Do you class yourself as having a disability?

Q7

Have you been diagnosed with any related medical conditions since your surgery?

Other :

-The neurologist doesn't think the memory issues would be related to the tumor, different part of the brain, but his science is wrong because the whole body holds memory, not just one place. Eventually science will catch up to itself.
-Von Hippel-Lindau Syndrome (VHL)
-Stroke, Holmes Tremor
-Cerebrospinal fluid (CSF) issues
-Functional Neurological Disorder (FND), Post-traumatic stress disorder (PTSD)
-Additional tumor on spine
-Hemorrhage 1 week post op
-VHL
-Under-active thyroid/ peripheral neuropathy/ fibromyalgia/
-Recurrence of tumour in cerebellum and additional tumours on brain stem and spine
-Short term memory loss
-Spinal stenosis (probably caused by imbalance issues), Lynch Syndrome (MSH6 gene)
-Holmes tremor. New tumour has grown
-Surgery worsened compressed nerve issues in my neck from positioning on the surgery table
-Hydrocephalus
-Meningioma 

 

Q8

Do your issues affect you…

Other:

-They come and go
-Anxiety is there most of the time
-Hardly ever once every few months if that 

 

Q9

Are you?

Q10

What is your age group?

Q11

In general, are your issues…

My first thought on seeing these results was 

'Its not just me!', 

combined with almost instantly with the sadness and anger of 

'Why dont they believe us?'

 

From Q 2:

73% struggle with fatigue.

49% have brain fog

49% have issues with concentration and attention

45% have memory issues

43% struggle to find the correct words

37% forgetful

35% confusion/ decreased clarity of thought

24% struggle to type/write words

23% say the wrong words 

17% spelling has got worse

Although from my experience of the various medical professionals - only fatigue and, maybe, brain fog are related to the tumour/cerebellum, the rest have nothing to do with it! Categorically saying to me speech issues such as these have nothing to do with the cerebellum! Therefore, blaming my cognitive issues on 'Functional' disorders instead, and definitely implying its my thoughts about them and nothing to do with my tumour, surgery or cerebellar damage.

Yet the lowest score here is 17%, saying their spelling has also got worse. Something when I have explained to various neuro doctors has changed for me - that I now have to really think and spell out words, and get the tense of words such as 'send' and 'sent' constantly wrong, rather than just instantly write or say them as I did before - I have never received more than a look of total derision and a 'it's not linked' for,

Only 7% say they dont have any of these issues.

 

From Q3:

55% balance issues/ataxia

54% feel dizzy/wobbly (these top 2 are accepted by doctors as linked to cerebellum)

47% sensitive to sounds/too much conversation (this Dr's imply is unusual for the cerebellum)

32% weakness

32% whole body coordination/clumsy

30% hand control (I have been told by all the neuro Dr's that my hand issues are nothing to do with my tumour/surgery, although a physiotherapist said my issues were clearly stemming from my neck or brain - she couldn't test nerve points past my neck to distinguish which)

28% tremor/twitching/shaking

23% blurry vision  (Again, vision issues are supposedly not linked by the neurologists or ophthalmologists I've seen, despite several also having some of these same vision problems at times?!)

23% vision that changes

20% sensitive to lights/flickering

20%  swallowing issues (again been told it's not linked)

15% double vision 

4% nystagmus /eyes flicker

13% have none

Q4

63% Anxiety

34% easily overwhelmed

34% depression

34% no patience/short tempered

32% fight or flight/startle response exaggerated

28% nerve issues in head

26% nerve issues in body

24% nausea

20% sexual dysfunction/loss of libido

19% insomnia

19% motion sickness 

4% psychiatric issues

8% have none 

Some of these the Dr's acknowledge may be an issue, but more as a result of trauma and the stress than a possibility it could be related to the cerebellum. (Which it could be? but how to Dr's know if we've never even been asked?) Yet only 8% of us have none of these concerns.

 

Q11

61% worse when tired

50% worse when stressed

43% worse when anxious

28% variable for no clear reason

20% constantly the same 

Again, the amount of times I have been looked at like I am lying, or strongly exaggerating at the best, when I explain that my symptoms can change vastly. Yet clearly it's not just me!

'One day I barely notice, the next I can barely cope with them.' 

Also I feel I'm not believed that when they see me they think I seem 'fine' and so they don't see an issue. I am sure the only reason I am normally OK when there is that I get a burst of adrenaline on the 'stress' of being back at the hospital and never being believed - which actually boosts my thoughts and responses. Plus, that also explains why I feel 'burnt out' shortly afterwards and almost fall asleep or can't talk properly when I get home. 

 

Things need to change. 

 

Cerebellum studies have been done since the 90's with Jeremy Schmahmann's pioneering work on the cerebellum and cognition and changed the belief of how the cerebellum works... 

... isn't it about times things start to change within the actual medical profession too? 

 

.

Cerebellum - it isn't just about balance!

I got told at some point after my surgery that having a part of my cerebellum removed is the best area of the brain to be removed as "it doesn't really cause any issues".

Now while I fully accept that it would be far better than many areas, removing a 3cm area of brain and the required surgery certainly doesn't mean you will always have absolutely no issues!

Many a time since I gave spoken to a GP, or even a neuro specialist about the cerebellum's links with cognitive function, speech, anxiety or depression and they have looked at me blankly. They never say, 'I don't think it's linked to the area of the cerebellum your tumour was' or say anything to imply that I have understood it incorrectly - instead they clearly don't have a clue what I'm even talking about!

 

They sometimes say 'it mainly controls balance', then add 'you don't seem that affected with this'. But I've also been told "I've not heard of that link before." 

 

 

Are they the actual experts? 

Do doctors, even brain specialists, really know more than their patients?

 

Or could actually asking the patients 

 

'What things do you struggle with now?'

 

actually help both the medical profession and us patients out?!!

 

Even on Wikipedia it says this about Cerebellar Cognitive Affective Syndrome (CCAS)

"They reported that patients with injury isolated to the cerebellum may demonstrate distractibility, hyperactivity, impulsiveness, disinhibition, anxiety, ritualistic and stereotypical behaviors, illogical thought and lack of empathy, aggression, irritability, ruminative and obsessive behaviors, dysphoria and depression, tactile defensiveness and sensory overload, apathy, childlike behavior, and inability to comprehend social boundaries and assign ulterior motives"

This article 'The mysterious, multifaceted cerebellum', being a really easy to read and informative, the end of it saying.  

 

"What’s clear, however, is that the cerebellum can no longer be ignored — and that its connections throughout the brain and contributions to brain function may be much broader than scientists had initially imagined."

 

From - https://knowablemagazine.org/article/mind/2020/what-does-the-cerebellum-do

 

There are also these, basic but interesting, links (that every neuro doctor should know!) about cerebellum damage and its side effects.

Cerebellum Brain Damage: What Causes It & How Rehabilitation Works 

"Of note, the cerebellum also helps to regulate other visual functions, such as the vestibulo-ocular reflex (VOR). The VOR is what allows you to continue seeing a stable picture even when while you are moving around. These visual functions may also be affected by cerebellum brain damage."

This interests me as before I knew about my tumour, I complained to the GP saying my vision felt like I was looking through a video - moving up and down as I walked. Plus I have never felt my visual perception is back to normal afterwards, I can turn my head and lose balance and so can't look backwards easily, often feeling things are just not fully still around me. But again, I just get looked at like I spoke to an alien if I discuss it with a Dr!
 

Plus this article that everyone who has has, or knows someone who has had a brain injury should read.

Dealing with Sensory Overload After Brain Injury

Many of these approaches I naturally realised helped me long before I read this, and no doctor or therapist has yet to ask me, let alone help with them!

Also, as I had hydrocephalus before my operation, all parts of my brain must have been struggling beforehand. How can they know if being in this state for weeks caused damage or not? It drives me insane when they say its nothing to do with my surgery and yet the issues only started just AFTER it. Many a time I have said, it could have been the tumour, the hydrocephalus, the surgery, the swelling after... and I'm not blaming the hospital or staff in any way - but please acknowledge there is a problem! 

I also set up a survey for my Hemangioblastoma brain tumour group - asking those who had cerebellar tumours to list their current issues. The results are exactly what I have been saying for years and are so very similar, yet we are all ignored (and I cried when I read them) 

I will try and publish the results in another blog post soon x

And please search my previous blog posts on the cerebellum and its side effects for me. https://benignbraintumour.blogspot.com/search/label/Cerebellum

Missing area in cerebellum

The outside is missing!

Showing how messed up my neck is too!

Empty Inside

How can I explain to you,

What I can't even understand myself.

That I just feel empty inside.

Or that a part of me feels broken.

Just following the motions in living,

but half of me just feels dead.

I don't want to die, 

just not too sure I want to live either.

Well at least not like this.

I feel useless.

Worthless as I am.

Constantly a burden to you all.

When I'm tired, I can't think.

I can't cope with my body.

Don't want the constant struggle.

Aches, pains, brain fog, fatigue, 

always fucking hurting or needing to rest.

Having to take 5 minutes.

Trying to switch off.

Yet.

Never feeling rested.

Not able to fully relax.

My body pounding or exhausted.

Tingling, itching, sore or just plain numb.

That invisible itch in my skull.

constantly reminding me of that scene in Harry Potter -  

when Voldemort is inside him and he's just writhing from another's evil soul...

I have to be distracted to be happy.

Get myself out of my head. 

Switch off my negative feelings. 

But what the fuck can switch them off?

 

Every damn thing I enjoy I can only do for so long.

Before I hurt more, ache, feel dizzy, feel tired, can't think, can't type, 

forget what I'm doing while doing it.

Before someone notices that I'm not talking properly. 

That I can't pronounce something, 

Or said the wrong word.

Start dropping things.

My hands forgetting how to work correctly.

Can't see right.

Blurriness descending.

Hand eye coordination gone wrong.

Unable to move out the way.

 

While my head starts buzzing and pulling, 

Like its twisting inside.

Feeling all its weaknesses instantly. 

The physical and the mental scars start to breakdown.

And sleep tries to smother me.

Again...

 

Go to sleep.

Start again later.

Again.

Again.

Is it me just being weak?

Do I need to just get on with it?

Yet, if I try, I just fail.

I just don't know what to do.

The world is overwhelming. 

I don't know where to start.

There's just so much I need to do.

That I want to do.

But I just can't remember what. 

 

So I do nothing,

just scroll on my phone.

Until something reminds me.

Or I just want to cry.

Sink into the bedsheets forever.

Forever. 

Their tests say I'm fine

Because adrenaline hits well when faced with a challenge.

Something to make my life worthwhile.

A meaning.

Yet they tell me, 'Average, you're fine'.

No I'm not, 

And just maybe, just fucking maybe, 

have they thought this can't speak straight dipshit of a person was actually over average before?

That's,why I'm struggling now. 

Not that I've always been average,

but because my brain has changed.

Maybe that's why I can see through the bullshit?

The constant, drip feeding of the nudge team.

The 'stop you thinking' media.

The glaringly obvious manipulation and agendas.

The lies, the puppets, the distractions.

I'm blind to it all and see clearly at the same time.

And it hurts, it hurts so fucking much, that when they say to jump, others just say 'how high'.

Bending over to lose their rights, and their health, and their freedom... forever.

That of their children.

People I love.

I don't want to be part of that.

It breaks me to think of it.

I don't want to know.

I can't agree.

Exhausted even more from the pain of that division.

My babies...

I try and make plans. 

It works for a while.

Then exhaustion returns and I have to stop.

For a day, or a week.

How much is emotional and how much is physical I don't know? 

But I can't cope.

And after, I'm so behind on the daily chores that extras just aren't possible.

So when, or if, I ever catch up.

(When others help out)

I've just forgotten what I was doing...

Over and over.

Books are half read.

Clothes are half sewn.

Jewellery never finished.

The crochet needle still with wool on it.

Letters never written.

Survey results never published.

Blog posts in draft.

So many to do lists.

Their reminders silenced long ago.

And still the floor needs vacuuming, the washing putting on and the rubbish going to the tip!!

But it's too much.

So I just don't start.

And once again.

Tears just roll down my face. 

As I'm sitting there blankly.

Empty inside.

Until a customer knocks at our door,

And I wipe my damp face, put on a smile, and they never even know.

It feels like an act.

It's not me.

 

Or we go out.

Escape the reality 

Drowning in natures beauty instead.

Silence.

So healing.

So, so healing...

At gigs, I'm a different person.

The hidden me appears.

I even look different. 

I know I do.

I can feel it.

The switch has flipped.

I chat to anyone, I enjoy talking with others, laughing, 

Helping them, 

Being of use.

Being needed.

Being appreciated.

On top of it all for a while. 

Hyper focused and organised.

Content.

Happy.

Even joyous!

 

And then we get home.

The energy vampire in this house haunts me.

Tiredness returns.

My brain starts switching off.

My face changes.

A part of me disappears again.

It's been used up.

Washed away with the make up.

And the crap part returns.

Back to the me that I don't want to exist.

 

Empty.

 

Empty inside.

.

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 💖✨

I thought...

I thought I was angry, a stroppy red head,
But I'd had so much trauma, I often wished I was dead.
No-one seemed to notice, no one seemed to care,
They couldn't see past the surface on what really was there.

I'd been scarred as a toddler, scared as a kid,
Abused as a teen, not fully realising what he did.
I thought it was normal, thought it was fine,
Didn't know that my childhood really wasn't mine.

I thought I was grown up, I thought I was cool,
But all along I was played like a fool.
Yet everything was hushed up, "Don't mention it again",
Until in the end my soul was crying with pain.

So the anger exploded, the fears came to light,
But I was just judged, "She really isn't right".
Of course I wasn't, these traumas lay inside,
Haunting me daily, opening my fears extra wide.

I thought I could tell them, let my truth start to be seen,
But no one wanted to hear that perfect they'd not been,
"Forget about it all, just focus on your now",
Although my mind didn't seem to understand how.

And still no one listened, still no one cared,
"Just don't be so sensitive, be glad you were spared".
But, how can you be normal when you're dying inside?
Too scared to live, just wanting to hide.

I thought I was crazy, I kept reliving the pain,
I must have been guilty, felt I was insane,
Never once mentioned by those that had known,
Memories haunting me, I felt so alone.
I didn't want to be me, yet to scared to tell,
That every day I felt I was living in hell.

So I blocked up the pain, pushed it all down,
Until one day it burst and I felt like I'd drown.

I thought I'd address it, I thought I'd be brave
But it also felt like I was digging my grave.
I wasn't the bad one, it wasn't my fault,
But my life as I knew it, had come to a halt.

So the pain just erupted, there for all to see,

Finally, someone was listening to me!
Releasing the trauma, releasing the fears,
Connecting the dots, and a lifetime of tears.

I thought the old me is going, a new life begun,
I often wish it'd been sooner, so it could all be redone.
To look back with fondness, rather than wish it away,
To love every moment, to live for the day.

I realised I was powerful, realised I was true,
Happy with what I have, appreciating what I knew.
Finally knowing what it means to be free,
And for the first time ever, I finally could be me!

I thought I had got there, thought I finally knew Jo,
I wish she would stay though, the negative of me go.

Yet the darkness keeps returning, I have to again turn on the light,

Once again I'm trying, as I want to look back knowing I did alright.
Know that I healed my soul, that I healed my pain,
And never, ever would it happen again.
But for now I keep trying, knowing my goal,
That every part of me finally feels that I'm whole. 

 

.

Prayer and nature

Today after my dog walk round the park, I once again sat on my favourite tree by the gates. Sitting right next to the road where my mother, my aunt, and I know my grandfather walked to school on the then dirt track.

Where on his way to school he used to go scrumping apples from the then orchard where I am now sitting. Where my great-grandmother also had walked to that same school well over 120 years ago. My great-grandparents and my great-great-grandparents probably also walking past this spot on their way to church for several decades. 

Where my family had been living since 1875, always less than 130 metres from my house!

As I sat there, on this spot that connects me to them,  I once again thought about my ancestors and the many times I've prayed for them to support me, give me the strength I need to continue.

And I realised sometimes that's all we have left... prayer.

Many people on my brain tumour group say they are sending prayers to others, many say they pray themselves, that praying gives them strength and it's there when there is nothing else left.

It doesn't matter to me of you call it God Allah, Jesus, Grace or the Divine Source . The intention is the same.

The knowing there is a bigger plan is the same.

The love is the same.



And with that thought and the tears rolling down my face, a robin appeared in the branches of the tree I was sitting. Singing its amazing song. Stretching its body, up and down to balance itself against the movement of the branch in the wind. trying to keep its balance. Going with the flow of life...

Prayer and nature, sometimes it's all we've got. 

But sometimes it's all we need. 🙏🌱💖💫 

 

My Great-Grandparents

My Grandad riding (backwards!) on the road at the side of the park!

 

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