Happy anniversary Sandhy!

I died on the 19th of May, 2014: I suffered from a subarachnoid haemorrhage in my brain - called the subarachnoid space. The space was filled up with blood.

It was everywhere inside my head. My neck. A lot of blood. For over 15 hours. Dying. Quietly. 7 years ago now.

I had a horrific, unimaginable headache that pushed me into a coma. I never even knew. With those type of headaches, no one remembers them. They are beyond saving sometimes.

But I helped my own survival - I left the building. Waiting for help.

My brain has 6 aneurysms. One [the worse one] of the subarachnoid haemorrhage area was clipped. The other has been bandaged. The others are still sitting in my wonderful head. Fingers crossed. Thank goodness they check it every year.

I have a titanium plate in my head. I hit that head a lot. My mind does not look or see. It waits for the brain to tell it. So - a lot of painful bangs on my poor head. At least I don't cry every time now. I can used the mind a little more. Better than hoping someone will stand in front of me all the time - I would probably be rather violent. I always try my best. Always.

But sometimes? No one understands. And at last, I understand that. I understand that people think I am stupid. Slow. Unattractive - such awful lack of self now…

Anyway. The subarachnoid haemorrhage and the Brain went on causing quick death - so I also had a minimal stroke 4 days later.

Today, on the 19th May 2021, I am still here.

My FH went to work.

Today I spent the day alone.

Because I remember this now. Piece by terrifying piece. It has taken a long time - and it's hard.

But - I am still here. And my FH is too.

So! Happy anniversary to my FH - and: happy anniversary Sandhy! You have survived three times now - once through ovarian cancer. Secondly, having a 4 hour operation after 15 hours lying on the ground in a coma. Waiting. And third was the bloody stroke. Not being able to run. More help in my head…but it did wake me up!

Surviving. 

''The face surrounded by lots of hair. The face without Bells Palsy – the face before all this BS cancer stuff happened – and to think I was complaining then!!

The old face I had was actually rather a nice one actually. Ah vanity vanity...''

           

       

a bad week

This week has been one of those weeks. 

When your head is almost on fire with rage and upset and distress.

When your heart breaks because everything seems to go wrong.

Bad week. 

Life post my Brain Injury

Fury

/ˈfjʊəri/

noun

noun: fury; plural noun: furies; noun: Fury; plural noun: Furies

1. 1. 

   wild or violent anger.

   "tears of fury and frustration"

   • extreme strength or violence in an action or a natural phenomenon.
     
2. "the fury of a gathering storm"

   
   
3. 3. 

   GREEK MYTHOLOGY

   a spirit of punishment, often represented as one of three goddesses who pronounced curses on the guilty and inflicted famines and pestilences. The Furies were identified at an early date with the Eumenides.
   

   Phrases

   like fury — with great energy or effort.

   "she fought like fury in his arms"

Adjusting to 'Life post my Brain Injury'. Even now, 6 years later...but at this stage, I am [at last] understanding what life is actually about. 6 years has made a lot of difference in the world. And in people. And in me.

Most of the time, I am trundling along, hoping for the best. Moving forward. Hoping that new people that I meet will become friends. Or neighbours. On just people you can speak too when you are working in you garden and they walk past.

But quite a lot of people are not like that any more.

They are about as interesting as having half your head removed. 

As your brain has been totally battered, then perhaps when you start to recover, as you look for help, in small ways, it doesn't really happen.

Because, surprising [for me] a lot of people are extremely unpleasant.

They are not like animals. They do not understand the pack.

Animals hunt their prey by working together with other members of its species. But humans?

They lie.
They deceive.
They scandal behind your back.
They discard you - like rotten fish.

And - such fun darling! They talk about you as if you will never understand what they have said. Because we struggle to grasp things immediately. We have to ask. We need a bit of patience. But that doesn't happen all the time.

Because you are a ''Stupid'' person in their eyes [but they never say that out loud…] - that is what happens when you have a brain injury. Life changes so much.

Small piece of advice, all you who have a massive brain injury; always hope for the best. But never rely on people unless you know absolutely that you can trust them.

In your life after traumatic brain injury, you have to ask for help.

And some times, others are just too busy. A tad distressful. But hey - onward and upward. Right?

MRI

Extreme #wind on our hill, scary trees at the end of our garden, ‑1 °c temperature [eee!! Ey?] and yet ANOTHER trip to the Royal Devon & Exeter NHS Foundation Trust this morning. Early. 

Brain scan [MRI]; every year. And no matter what anyone thinks, feels, says - this is the scariest for me all year until I’ve arrive on the other side this morning without having [perhaps literally] a small breakdown beside the horrible MRI creation. Thank god for the amazing people that look after me for this.

Today, speaking, common sense and bravery? Perhaps after the extreme noise in my head, the nervousness of using my same poor #head to make sure I don’t do anything the wrong way. I seem to do lots of things wrong, so my bravery is small today. Hey - onward and upward 

To be honest? That is where I say fuck. A lot - in and out of my head. Not just being jolly. It appears at it’s noisiest and most violent because your head does NOT want to go in there...

So. 9.30 this morning. 45 minutes of complete hideousness. The noise, for me, is possibly almost as incredible as being unable to “behave” as this is GREAT! See? For fucks sake...

I hope it’s still 45 minutes. They help me by telling me the minutes are passing - and how many I still have left. And DO NOT move. 

And those of you who have had this, keep your fingers crossed for me. #scary 

03 - 09 02 2021

This is sort of going backward and forward, as I did a really speedy blog this morning, as I was in that 'shriek' mode. Hospital appointments do my head in [always], but this year has been quite bothersome, to say the least! So - hang in there, hopefully I shall find a way to do this in a proper order. Aphasia is extremely irritating. 

So - I AM still attacking my blog! But February is a very difficult month every year. This week I had my bloods taken for my CA 125 check. Even that it is quite frightening.

Last time I had many sticking attacks on both arms…on the fourth one I did get slightly peeved. But the proper phlebotomist arrived and she took my blood samples and it all went well. So last year I had a massive blue bruise all along both arms. Shocking for most, but for all this time, I have sort of got used to it. I always know that it is useful - so the pain doesn't last long! She says…

AND! Bargain - on my right hand side, the feeling is far, far less than on my left hand side. Woop woop! Thanks for one small good thing from having a little stroke.

This year I was so worried [for an entire week] but for some reason I had the most incredible nurse that did my blood. I felt absolutely nothing!

So that was rather an exciting day - off to the local Exmouth hospital, where our doctors work, plus part of the hospital is a Minor Injury Unit. It's completely different to the doctors surgery that I had in Exeter. This is bigger. So I worried about going. Mainly because I have the CA 125 blood test, and [as usual] my blood refuses to be removed.

This time I had the most incredible woman - she did my bloods, I didn't even FEEL it! I told her to note that my blood refuses to be removed. She did it so well that [and I am sounding a bit bonkers here] I didn't actually feel it - at all?? Great.

But - the best thing. For me anyway - she had obviously checked my notes. And apparently she did work in an intensive care unit [ICU]. So she was so incredibly understanding of how I am. It was the very first time that someone really understood what happens when you have a massive brain injury.

Interestingly, [from this super nurse] it can be so much more worse for the friends / relatives when it happens. Because when you have that kind of chaos going on in your head, you aren't there. At all.

Anyway - in the meantime, one of my fingers has a horrendous nail that has been  a sort of abscess underneath the finger nail for about two years [yes - gross. REALLY gross!]. So I asked her about that as well. I was feeling brave!

And she sorted that for me too! Yay! I have CHOPPED off my nail and send it off to the hospital for testing. It takes three months [and it is pretty gross] as they make a biopsy to find out what is living in my finger nail! Yuck. Times ten.

Last Friday was a little bit worse, as I had to go up to the RD&E hospital for my breast mammogram. 10 years I have been doing that, since ovarian cancer blah blah. So popping up there is usually simple, even when your #brain has broken.

Trying to be sensible and do my normal blog isn’t really very clever with my mind and my brain going into distress. Hence this one being in the wrong place in the cue.

And the word distress… well even that isn’t quite what I mean. Distress has got nothing to do with how I feel - it’s more like I think I’m just making a big drama. And other people almost refuse to understand.

That nurse did make me cry. She was so understanding because she has worked in the place where you are when you have a coma i.e. you have a brain injury or, like me, a total nightmare in my head. When I got outside I was crying but it was a good type of crying.

She did she did not lie and she understood.
Which is very unusual.

Now I have been for my breast check [waiting for the letter in the post - 7 to 10 days] and for my CA 125. Which is a serious check because last year the CA 125 had gone up. Happily last year I had three checks and it had gone back down again.

Fingers crossed. And I hope to be a little more constructive with putting this page together here.

Busy week…

This week is a type of week that I think is a ''Learning Curve'' - about a lot of things. Love it. 🔫

Last week: VERY SCARY!! VERY upsetting.
This week: not SO scary today 🦸🏻‍♀️💪🏻

Last week: I had to make my own map; and deal with my own 'curve' [that word is a lovely polite word right?]
This week: I know exactly where the #Oncology department lives...right next the ''Had Lots of Chemo'' department.

Where I am going today I know the right level, the correct section and again, my head in its mask. 🙀😁

After coming in for so many years I do not think twice. They take really good care of me. No matter what. Even going in is not as scary as last Friday. Yay! And the #doctors, #nurses, #everyone - are #kind.

Fingers crossed for good news later💃❤

#aphasia #nhsheroes
#cancercheck #CA125
#threeoffour #hospital
#RD_EWonfordMedicalOncology
#onwardsandupwards
#cancersurvivor
#braininjurysurvivor

''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!

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! 💪🦸‍♀️