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 💜

.

My fundraising event!

To celebrate my 3 year cranioversary (my craniotomy anniversary!) 

on the 18th May 2019 

I am organising a fundraising event for two charities which helped me during and after my surgery...

St George's Hospital Charity 

and 

The Brain Tumour Charity

My favourite rock covers band Ransom are playing that night (Ransom includes my husband, Dave, and my son, Zach 😁) and I will be holding a raffle as well as collecting money for both charities.

So far I have been offered some amazing prizes including:

A Neurodevelopment Screening and Treatment Plan worth £850

A free Reiki treatment

A pyrographed guitar

Lunch for 2 at The French Table in Surbiton 

Some Feel Good Music Collection CD's

An iChill Music CD

A Louise Hay Affirmations CD

A Riverford Cookery Book

A Mens Muscle Ease treatment from Clarins

Bottles of Wine and Sherry...
Several Children's games. toys and puzzles

     ...if you would be able to donate a prize of any kind please email me at info@jobarlow.co.uk

Please come and support us on the night at: 

The Cricketers Pub, 81 Clayton Road, Chessington KT9 1NQ 

- starting at 8.30pm 

Please see the Facebook Event Page for more details - https://www.facebook.com/events/589502011510391/

If you are not local or not able to make the evening, to be in with a chance of winning any of these fabulous prizes please donate to my fundraising page https://uk.virginmoneygiving.com/JoBarlow - and let me know which prize(s) you would like on the site when you donate. For each £1 donated, I will allocate you a ticket (listing your choices of prizes for if you win) 

Hope to see you there!

I am also donating:
£1 from each of my paperback book sales to both of the above charities, 50p to each for all Kindle e-book sales, plus...10% of any sales of original art on my website!
... PLEASE consider buying something!

Also from the 11th - 25th May 2019 I will be holding an art exhibition at Dittons Library, Thames Ditton - where again 10% of any sales will be for these two charities. 

Some of the Raffle Prizes so far...

 

My 6 month fundraiser...

I want to do something special to celebrate my 3 year cranioversary (the anniversary of my craniotomy!) next year...

SO... for the next 6 months - from now until Saturday 18th May 2019

I am fundraising for both:

'The Brain Tumour Charity' and 

'St George's Hospital - Neuro Appeal'.

I am donating:
£1 from each of my paperback book sales to both of the above charities
50p to each for all Kindle e-book sales
plus...10% of any sales of original art on my website!

... PLEASE consider buying something!

I am also using it to motivate me into doing more art work again... from the 11th - 25th May 2019, I will be holding an art exhibition at Dittons Library, Thames Ditton - where again 10% of any sales will be for these two charities.

ALSO... right now for the next 7 days my Kindle e-book of 'It's all in my head' will be selling at half price, gradually increasing over the week back to its normal selling price. I will still donate £1 of any e-books sold in this time. (50p each towards the two charities)

Finally... I am planning a raffle for a 'music event' near the 18th May (not yet finalised), but if you have any donations or offers of events, free meals, treatments etc for prizes then I would be very grateful. There will also be fundraising tins for both charities so you can choose who you would rather donate to.

PLEASE SHARE & DONATE... Donations are starting now at https://uk.virginmoneygiving.com/JoBarlow

The Price You Pay - The Financial Impact of a Brain Tumour

I find this PDF hard to read 😥

 

... as the time between being diagnosed with a brain tumour and the weeks of healing after were TOUGH. 

When I could barely move off the sofa, walking into the garden or to the toilet took major effort, I was scared to shower by myself in case I fell and then didn't have the strength to even dry my hair! I felt drunk beyond control 24/7, and was trying to hold myself together and ignore the constant spinning in my world. I couldn't see straight as much as I tried, nor could I look at moving TV or computer screens without awful travel sickness type nausea after just a few minutes, I often couldn't think nor explain myself without it draining so much energy it resorted me to tears... when my husband and family had to do EVERYTHING around the house, basically my kids had to ‘baby sit’ ME, and to top it off - Dave had to try to keep up with his self employed business! These weeks were probably tougher than actually having brain surgery! 😢

We had NO support, advice, help or idea how I would heal or what I should, or could, do.

We were incorrectly advised that we couldn't claim any PIP, ESA or carers allowance and told that we could not get any more financial help than Tax Credits. Despite this I had sent off for some claim forms, but I couldn't see, or think, enough to fill them in - but as we were told they were pointless anyway, I never did. 😡

During these few months, several of my husband’s clients’ disappeared- along with our income.

So not only did we have the stress of not knowing what was happening with my health, the fact 3 of our kids were taking various exams (GCSE, BTEC and Degree levels) and everyone was under pressure with the extra house chores, and their attempt at nursing!

We had the extra stress that our income had almost disappeared and we had no way of increasing it, or even knowing if we could pay the bills that month and buy enough food...

Almost 2 years later we are still struggling... if I do too much I cannot function for a day or two. Even on a good day I can still struggle with coordinating cooking dinner and the 'turning in circles' in the kitchen, as I get food and cook, as it throws my balance off. I still need to rest each day, some days (if I have been busy the day before) for most of it! 

I cannot book things in advance as I don't know if that day I will be just too tired to go. If I get up too early then I feel ill and exhausted for the whole day- I need a good 9 hours sleep, and often manage 10 or more. When I am tired I just cannot say the correct words, or explain what I mean, I do things wrong, I drop things, forget things and am uncoordinated - and sometimes I fall asleep sitting up on the sofa!😢

Yes, maybe I 'could' go to work, but its pointless as we would just lose the same income in tax credits. I want to do more self employed work, on my terms that suits my energy and build up our income that way.

Maybe you could support me in buying my book or some art work?

'I' know that I had a 3 cm lump removed from my brain...but most people say I "look ok now", that I "look like normal" or “just back to how you were”... so it feels not many others seemingly know or care that I am not the same. 

My problems are invisible to most. 

I don't even have a visible scar on my head. The scar that you could see just after surgery on my neck, now no one can see as it has healed so well, and most of it is under my hair... the hair that is now almost as long as it was before the surgery. No one knows. 

 My scar is inside my brain...

I wish I had known about this support back then, and this information is just showing the starting of the support that needs to change (as highlighted in the PDF booklet), as we need FAR more than basically being told 

“Your tumour is removed, now go home and get on with your life” 🤐

So I decided, I order to help get this support to others, I am going to be helping with fundraising for The Brain Tumour Charity - so if you know anywhere that will have a collection tin- please let me know … and hopefully others in the future, who are in a similar position that I was, will find out sooner the help and support they can get and need.

- Please share 💕