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 💖✨

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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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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A poem to my surgeon and the nurses...

I wrote this last May, on my second cranioversary (my craniotomy anniversary!) but only just decided I will post it on my blog.

I never sent it to St George's, despite planning to after, as I felt it a bit odd and stalker like to do so! Maybe if you are a nurse or doctor you can let me know if it would be acceptable... but whatever, this is dedicated to you  💜 

...and especially to Mr Jones and all the nurses on Brodie Ward at St George's 💜😇💜

Thank you

I know it was your job

A daily task for you

But I don’t know if you truly realise

The thanks of all you do

My kids wouldn’t have a Mum

My husband not a wife

There would be an empty hole

If you didn’t save my life

As every day I know

That I wouldn’t still be here

Without your knowledge and your skill

And shed a silent, thankful, tear 

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