''there are so many people like you…''

So - now I am still trying to create my 'blog'. I think. What IS a blog anyway? Maybe what I should actually say is that I want to try to understand what happened to me on the day that I started to die.

At the moment, I have an #aRt project on a Thursday, copying alphabet animals by our wonderful art chap, Stuart. They were originally done by a woman, Casey Gerard. It’s been very interesting for me.

One thing - I have always had an amazing mind set about life. It's MY life - and it cannot be deleted by anyone or anything other than me. Hence - I refuse to die unless I say so. I have such a sense of humour right?

Recently, someone said to me that ''there are so many people like you with this brain 'injury' Sandhy!'. Hmm. Chuckalicious. Injury?

To be fair, if this does not happen to you - you can never really understand what happened to me, as A: we are all different, B: some things are far worse that one can ever understand. Unless they or you have it. And - hopefully - they or you will not.

It is something you cannot study for. You cannot 'imagine' how we feel. So don't be a smart arse and think you know. You don't. You have an idea.

The best - people who try to find out. Find out from you, what actually happened. If you know. I do not know a lot. Yet. But there are a lot of pages [360 pages to be exact] with all the sensible stuff on it. Things written by nurses. Doctors. Surgeons.

We paid £50.00 for a copy a few years back. But I could not read it. Or understand it. I now have a far better comprehension. And I know how to ask.

I would not wish what happened to me upon anyone. No matter what. When I had cancer, the way of dealing with it and communicating across it - talking to others who had the exact same thing…it was something that I could cope with well.

Having a massive operation. Having chemotherapy - meeting people who helped immensely. They tell you almost exactly what is going to happen. If I was worried, concerned - I had a number to call. If  I was lonely - I had friends to call, and they called me. I changed my life - and moved on. I was so pleased - and so happy. We dealt with it - my wonderful FH and me. Family. Some friends.

But to understand what happened to my brain? Well, I have to understand what happened and then I have to try to get YOU to understand. That is not particularly because of me - I am the same as I have always been in some ways [not all the same as I was before - I never used to lose it…] but I have all ways loved to help others.

Living in different countries with completely different types of people - different things that happen because the places give you different path ways. And the incredible people that you meet - they stay with you for always.

But when people tell me that there are ''so MANY people like you Sandhy''? That type of remark would have made me quite violent a few years back. And that is not a little 'be worried' remark. I became quite violent in the hospital. Through no ones fault - my head needed fixing - my brain and my mind. I needed to come back. But it takes so long.

Incredibly, I was Sectioned. Because I was determined to leave, I was kept in the hospital under the Mental Health Act. And I would not take the 'very powerful medication'.

I have always detested taking medication. And in looking back - I am very, very glad I refused. Incredibly, I cannot remember refusing - I could not speak much. I wasn't really 'there' yet. And not being able to speak - it is possibly the worse thing to happen to you in many ways.

Try to spend ONE day without speaking. AT ALL. See how you go. It is incredibly frustrating.

So I image I swore at everyone, and refused. I suppose not being able to say 'no' - makes you so afraid. You cannot make a refusal, if you cannot say 'no'. Ever.

So - a rather large apology for my beautiful hospital people. Honestly? I was not there. But I am now!

But - this is looking forward. This is after the beginning. Tut tut - as per, I am wandering about in my brain, getting ahead of myself.

I had no way to speak up properly and say; ''NO - you have no idea. You are not in my head. You do not ask. You think [this is also a good one…] that I look fine! And amazing!'' - sorry. But that's quite distressing. For weeks.

The one thing I have learned - getting better takes a LONG time. All our lives we rush and run. We hurry.

I have actually learned to look at what I have achieved - and in the last 6 years I've done pretty well. I think.

days ARE interesting

Days are always quite interesting. No matter what you feel like. It always gets better if you hang on. 

I am still sort of trying to start this from the ‘I am dying’ sort of day, but I am still struggling there. So, you’ll just have to hang on for the very exciting bit [which I can’t remember…grr]

And I am possibly cursing without even noticing. But that is simply my own way to try to cope. Although I think I’ve always sworn. 

Shocking. Oh shriek. 

I do chuckle when people wander around pretending that everything is perfect when they speak and what they say.

Fall over laughing, oh yes I do…

Excellent #aRt last week. And sorting the #design for our last room in the wonderful house. 

The aRt was absolutely exhausting. And strangely enough, I don’t get what they say is: “fatigue” after brain injury. I don’t get fatigue. I get something else. Have to explain that another day. I think [for me] that it is more like needing to make more effort and to think in a concentrating way. No ‘looking at the sky’ for 6 seconds and then carry on - if I do that, I wonder where the hell I am for 5 minutes.

Anyway. We were supposed to draw 26 letters [of the alphabet] - we had 3 minutes to work on each one, which we were copying from pictures on the screen from our ‘zoom’ aRt project.

Very hard for me to take it in within three minutes - sometimes I have to listen more than once. My husband listened to it all. It is hard for me to concentrate on something. I need the time to digest what I am trying to understand. If I don’t stop and let my mind work, my brain causes some unpleasant behaviour, which I could not stop in the first 2 years after the brain injury. But, well - now I am not as bad as I was a few years back. Because now I can concentrate. I could NOT concentrate. At all.

Now I hold onto ‘behaving politely’ - instead of telling people to f*ck off, as I need TIME and patience.

Sometimes I try to ‘get it’ - sometimes I get serious pissed off and run away to dig up the garden or cook something with chicken and piri-piri!

And as the FH said, if I had been picked up immediately, I would have also been a lot more likely to have been back to normal quite quickly. Or even remotely! I will never be ‘normal’ again.

I am seriously thinking of working with the e e cummings effect on my blog. Less thinking…

This week, the aRt project, part 2 of 4. I love going - but I still get stressed, as it is… [no, not embarrassing] - it’s a bit undermining. I have a very, very low esteem. It is very hard to understand in my own head that what I am doing is not rubbish. And it doesn’t matter who says how fab something I did is - it is simply mine. Unusual for me to think my work is brilliant.

But I am now back onto the way of what I’ve always done. aRt. And I shall get there.

without laughter today

''The most wasted of all days is the one without laughter''
e e cummings

Today I have been trying to do the ‘beginning’ of this blog - sort of saying ‘ok, I fell on the bed and started to die’’ or ‘I spent a morning vomiting in my toilet…then I fell on the bed and started to die’’ - PLUS…

I HAVE NO IDEA OF WHAT ACTUALLY HAPPENED. Other than what I have been told. And that sort of sucks, as I am told, then I cannot remember. Then I can. At least now, I can write things down!

As it became the very beginning of my ‘New Life’ it seems reasonably sensible to find out what actually happened from everyone who was there [wherever I ended up!].

So a tad peeved, but I will now be 're-asking'. I thought I could just run along chattering away...no. Not really.

So - in the meantime, that is me at Powderham Castle, telling the world that I and many others have aphasia. Happily, I can speak - it may be a load of tripe, but hey!

I can speak.

Tomorrow - it is my birthday! Please think about sending a little donation for my cycle this year? Raising funds for cancer down at our amazing Force cancer charity.

See here:
​Cycle 55 miles to help beat ALL cancer​

Thanks!

As I said in my last post - the first time in my life I had no power to help myself. And a long time ago I had a blog.

I had ovarian cancer, stage 3b in February 2008. Interesting - I though it was the worse possible thing that could have happened to me, other than I died of a nervous breakdown for being so worried about dying of cancer. Or my wonderful FH also having a breakdown too.

If only I knew then what happened since? I would have chuckled all the way through my cancer treatment, the incredible after care that I was given - the way that everything was explained, planned, shown and everyone helped me. With all the kind and beautiful people who dealt with me in the hospital, I felt so empowered. I was going to survive.

At that time, I loved the hospital! And everyone in it too. Because I was still ‘here’.

Then, I could speak in constructive ways. I could make the things that I wanted to tell you into something that helped me to express my feelings and my life and to make sure that it was comprehensible.

And I wanted to help other women that had the same thing - ovarian cancer. At that point, no one thought any of us would survive.

But we did.

I had masses of blog friends. Some of which I still have now. Some of my beautiful friends are gone, because cancer is so hard. It took them. But they are still with us. Still with me. You never forget if you understand what anyone is really going through. If you stop and listen. Hard! Or you have it yourself.

A wonderful thing to find friends though. A wonderful thing to manage to cope with the cancer. A wonderful thing to be happy even when you are struggling with a horrible disease.

My fab 10-year design job in Europe had to come to an end - too many operations, chemo and rather difficult for a while. Hard to walk after chemo - exhausted and I became quite over weight. And feeling like crap. Walking to the local shop I had to stop half way up the little hill to cope. It made me determined.

This is now a way for me to try to blog again. Determination.

For you - I have aphasia, which is a really frustrating thing for writing, reading, speaking…and for anyone who does NOT have it - no, you cannot EVER understand what it feels like. And I wouldn’t wish it on anyone. Ever. A subarachnoid haemorrhage / brain aneurysm and a small stroke 4 days later made me slightly pissed off. 6 days in a coma - chuckalious.

Aphasia is one of those things that happens when you brain gets damaged. In different ways. And everyone is different afterwards.

I am going to push this up while I am trying to find some money for our brilliant Force cancer charity. I will be [hopefully!] cycling the Nello in June. In the meantime, I am going to try to explain what happened to me in 2014.

And to explain that having cancer actually helped me to have a brain injury. A little mad do you think? Hmm.

It could all rather interesting - or it may be a tad boring…if the words are ridiculously pointless [to you] and they are not able to be understood; run away. Do not look back.

Aphasia makes your speech different - if you CAN speak. And the brain gets damaged, which means your entire core changes. Hello friends - the ones that are still here.

If it is even interesting at all, have a read - I shall be trundling out more of my Dramatic Life for the blog. And for the people who are remotely interested.

I am going to try to start at the ‘beginning’ - the day I almost died. Again. BUT - doing this with my interesting mind? It could go completely backward. Or not. And I have to ask people who were there whilst I ‘wasn’t’ to collect some of the things I cannot remember.

Boom boom - see how I go!

Trying to explain - it may take months…

I used to do a blog. 12 years ago. I didn't know how to do it, but it was a good place to deal with cancer. And it worked. It helped me to recover. And I met the most wonderful people that I loved [and still love] and they love me. We discovered many things about what was trying to kill us; here in the UK and in the US - and we helped one another if we could. I got better - spend time with family...had great jobs [again...]

This time was different. This image is the very last time I was 'ok' before I had a brain subarachnoid haemorrhage / brain aneurysm.

6 years ago I almost died. Again. 

So. What actually happened?

I certainly didn't jump out of bed and start waffling on about my ''crazy couple of months'' by chattering onto my blog. Or to my mates. Because I could not concentrate. On anything.

Because I could not speak properly any more. I could not write any more. I could not READ any more! I could not explain what a coffee cup was, when put into my hand. Or what I would like in my sandwich for lunch; I KNEW but I had no perception of how to ask the correct words. I really thought I was asking politely - but I was speaking like what some people call a 'retard'. Pretty chuckalicious hey? Not.

I didn't know who most of the people that I saw were called. Or who they were. The first thing was when I did not know my FH's name. For me that was neither here nor there. I was many miles away in my battered head. But my FH was shocked. 

It takes a LONG time to come back.

I only know some of what actually happened. Because having the type of 'injury' that I had is not something that you can trundle out of the hospital in a few days. Or a few weeks.

It's not something that the majority of people can 'recover' from easily - my FH was informed that my death was 'right there'.

12 hours before my head was to be operated on, my FH was told to rush to the RD&E hospital, as they were convinced I was at deaths door.

I had lost consciousness that morning - for the first time in my life I had no power to help myself. 

Planning? Just a day at a time…

 

Planning? Just a day at a time…

I am still scared to do this. The blog.

In my mind I say: "lets do it!". Determination. Onwards and upwards. I have decided to bite the bullet. Blah blah.

However. In my brain, my incredible clever little brain, it says: "do NOT do this. Nobody likes you. Everyone will laugh if you can't spell...or read properly...and gosh darling! You are horrendously ugly now. Tut. And so sloooow"

So the battle begins. Every single day. Between my brain and my mind. Interesting.

But after 6 years of having no confidence - what can one do?

Fight your way forward. Stop 'hoping' for people to help you to feel better. Be pleased if you can still get up and move. Be happy if you can read reasonably well. Don't curse every five minutes because things are so complicated and everyone thinks you are a twit. [See? Using a polite word there…excellent]

So hey! I am determined. But now I have spent ages typing this. So I'm off.

But I've started - and will try my best to make it more interesting. Or not.

The "Battle of the Mind with the Brain". And just me in the middle going "fuck!" - but less than I used too!

I think…

Help me to fund raise for Force! ‍
https://uk.virginmoneygiving.com/Sandhy_Robinson-Jones2021

Planning a cycle in 2021!

Help me to fund raise for Force! 😊🚴‍♂️
https://uk.virginmoneygiving.com/Sandhy_Robinson-Jones2021

A long time ago I had a blog.

I had ovarian cancer, stage 3b in February 2008. Interesting - I though it was the worse possible thing that could have happened to me, other than I died of a nervous breakdown for being so worried about dying of cancer. Or my wonderful FH also having a breakdown too.

If only I knew then what happened since? I would have chuckled all the way through my cancer treatment, the incredible after care that I was given - the way that everything was explained, shown and everyone helped me. With all the kind and beautiful people who dealt with me in the hospital, I felt so empowered. I was going to survive.

At that time, I loved the hospital! And everyone in it too. Because I was still ‘here’.

Then, I could speak in constructive ways. I could make the things that I wanted to tell you into something that helped me to express my feelings and my life and to make sure that it was comprehensible. And I wanted to help other women that had the same thing - ovarian cancer. At that point, no one thought any of us would survive.

But we did.

I had masses of blog friends. Some of which I still have now. A wonderful thing to find friends. A wonderful thing to manage to cope with the cancer. A wonderful thing to be happy even when you are struggling with a horrible disease.

My fab 10-year design job in Europe had to come to an end - to many operations, chemo and rather difficult for a while. Hard to walk after chemo - exhausted and I became quite over weight. And feeling like crap. Walking to the local shop I had to stop half way up the little hill to cope. It made me determined.

This is now a way for me to try to blog again. Determination.

For you - I have aphasia, which is a really frustrating thing for writing, reading, speaking…and for anyone who does NOT have it - no, you cannot EVER understand what it feels like. And I wouldn’t wish it on anyone. Ever. A subarachnoid haemorrhage / brain aneurysm and a small stroke 4 days later made me slightly pissed off.

Aphasia is one of those things that happens when you brain gets damaged. In different ways. And everyone is different afterwards.

I am going to push this up while I am trying to find some money for our brilliant Force. I will be [hopefully!] cycling the Nello in June. In the meantime, I am going to try to explain what happened to me in 2014. And to explain that having cancer help me to have a brain injury. A little mad do you think? Hmm.

It could all rather interesting - or it may be a tad boring…if the words are ridiculously pointless [to you] and they are not able to be understood; run away. Do not look back.

Aphasia makes your speech different - if you CAN speak. And the brain gets damaged, which means your entire core changes. Hello friends - the ones that are still here.

If it is even interesting at all, have a read - I shall be trundling out more of my Dramatic Life for the  blog. And for the people who are remotely interested.

Boom boom - see how I go! 💪🦸‍♀️