Having #aphasia - being utterly boring...

If you would like to really understand another persons extreme change in the mental, physical and lack of confidence [ha - rather understated...zero confidence], see my own ‘report’ on me - about having aphasia. It was so much easier to tell people all about ovarian cancer. Because I could think comprehensively  - I employed humanism. I loved everyone.

In my mind, people should embrace other human achievements in education, classical arts, literature, science...all the things that I loved. And still love. For others - not simply for yourself.

I could read. Once. I would understand in a millisecond...chatter about anything. Book, design, countries I went off to work in and lived in - people whom I knew, understood and loved. Or at least emphasised. Giving others importance. Making other peoples ideas more clearly defined. Argue. Discuss. I loved it. And the people I met love me back.

Firstly - LOOK IT UP! It is not something that we ‘get over’. We get a bit better. If we are lucky. Myself? Hmm.

So, I have that, plus [tada] a big fat interesting chaos inside my marvellous head. There is the Mind. And, the is the Brain. 

My cunning plot is to make sure that when I try to use a word, and I don’t “understand” or “remember” the word [but I KNOW I know that bloody word....] I make sure that I get that word out of my mind, into the “I Refuse” #brain. 

Then; repeat. All day. 

Today I suddenly had the word: eTHa. And I knew it. But I couldn’t definite it. Or spell it. 🤬

It is a very interesting word. A common activator of Thiocarbamide - containing drugs acting on different Mycobacterial targets. Things you learn at high school. And when you have interesting drugs that you take for “mental Anything attacks”.

It used to be a chemical compound. Ethanol. Volatile. Definitely volatility in my that it ‘goes away’. Anyway - another day with many things happening...another word slapped onto the aphasia, and happily put back in my mind.

#onwardandupward

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...''

           

       

patience gains the day...

This week my #brilliantbrain found a fabulous 'new' word...'retrospect'! 

Getting ''new words'' is a rather interesting thing for aphasia people, as we all know, all these words were in our brains initially, all our life. Until I had a brain 'injury' [that word really is irritating]

But with this? Ha. Half the time, we can't remember our own names. And NO...this doesn't happen to us all 'as we get older'. When people say that? Not too clever.

Something that I have not been capable of doing for 7 years. Capture the words that I have sort of lost. It just doesn’t stop moving forward with the things that are inside my head - but hidden away. Softly, softly, catchee monkey....

Last night I watched 'the Officer and a Gentleman' - a wonderful old film with Richard Gere and Debra Winger. And so many memories popped into my head from that time in 1982! 

And I am SO happy that even NOW my #mind and my #brain STILL recollect things that I thought I had lost.

Lord Baden-Powell also said: "don’t flurry; patience gains the day." Sometimes it is hard to proceed 'cautiously' in order to achieve you own objectives. I am horribly impatient. I certainly 'flurry' - a lot...I have always thought that life is so short! So many things to see and do. So many wonderful people to meet. 

And yet. After ones life changes - there are so many people who are rather uninteresting - they distress others in their own thoughtlessness.

And like doing all the things you did before the horrendous brain operation. Sometimes I feel I have become lost. 

But I am very impatient. Sometimes angry. Despairing. Sad. Violent.

Other days? I am the happiest person in the world. 

#gettingbetter #braininjury #survivor #aphasia 

Trying to think - logically

I keep doing pages for this blog. And I never get to the end. So you never see them. I have no self esteem. I feel discarded. Ugly. Not able to read what I have written - nor write quickly; trying for hours. It sucks. Mostly.

But sometimes you get a massive jolt. It is a roughly shaken push. A crash within your mind. Somewhere in your brain. Because sometimes you realise that surviving cancer, then surviving the massive brain injury and a few more little fun sidebars, still leaves many things that can affect you. Waking up is quite scary some days.

Specifically if you want to help others, and it is very hard.

I think that soon I will have to stop reading and watching the News. Not because it’s too hard to understand. Not because it is hard to read. #aphasia

No. But because seeing what is going on in India is horrendous. Many are desperate to find some form of help...and there is almost none.

Living in our country is interesting. People *complain* about almost everything. 

No one seems to really understand how grateful we should be.

Whining about creating new houses and not noticing our incredible hospitals - our doctors - our nurses - our police - our British government...space. Lack of funds - almost everywhere. People battling on to keep there families, friends - working colleagues. All trying to go forward with the COVID-19. Which, apparently, will ‘disappear’ eventually. Perhaps cancer will do that too? Eventually? Sorry to be sarcastic, but really? 

Many news reports are spoken by liars. Which makes me so angry at the news! And the journalists. Tut tut. 

So. Almost everything is there to look after us all. And NO it’s not perfect. How could it EVER be perfect. It has people.

At this point [and no, I am not religious] it breaks my heart to see the amount of people dying. In other country’s. In our own.

As it is difficult to give proper help in another country, when we need to do that here too.

So perhaps we should all consider what we really have. And stop whining!

And send what some people would call prayers. Others creating intercession for others by simply keeping them in one’s mind.

“Be careful” is not just physically - being careful for and of #everyone in any way is harder. Crying does not help.

But still. It is heartbreaking. I hold them in my heart. And I am so happy to be alive.

 

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?

 Traumatic Brain Injury. What? And yes - I am rather a bore about this. 😊

Anyone who would like to know what really happened to all those people you know [or don't know] that had a brain 'injury'.

Perhaps you noticed it on the news - in a film...at the bus stop...you look at people who look all weird. All broken. Friends tell you about 'people they know' that had such an 'awful' time. But they are ok now!

Of course they are. Most of the time the facts are 'invisible'. Sometimes the word 'invisible' changes into 'ignoring'.

A lot of these people struggle. Perhaps they can't speak. Or count. Or grasp a fast conversation mentally; or understand in a moment. Or read. Aphasia is very sutle really, unless you ask. A lot of us can't understand numbers. That really so sucks. Buying things is very chuckalicious. Not.

Or no-one bothers to see if they need a little help because asking for something - even a bus ticket - can be very very HARD!!

You who have never had a massive, traumatic brain injury - have a read sweetie pie. Because you CAN read. Try to get your head around the fact that it could actually happen to you...it's a little bit like having cancer. But harder.

And I can assure you - I speak with complete honesty about that. I have been through both.

I will always have the jolly aphasia.
That I can manage. Now.

I have actually stopped becoming horrendously violent. It has taken nearly 6 years for me to actually understand that shooting people is not allowed…heh heh

The interesting change of everything that happened while I was dying of a massive brain injury...it has been hard. But - onward and upward. Forever.

Saying to any of us who have this forever non stop #brain injury, ''but you look GREAT'' - it is not very useful. [note: polite remark by the Sarcastic Moi, right?]. Right.

We need people to understand that our lives have changed.

We are frightened. We are afraid. 😶
Useless.
We feed so awful. We need help - but it is hard to ask. Especially when people are too busy.

We want to find and see our old friends; our family; neighbours; people that we worked with - that they might suddenly come out with: ''hey - we read an article - now we have a small idea of what really happened! Just tell us what is really happening for you now. Can't we give you a hand?''

But that does not often happen - everyone thinks that either they can't cope with dealing with it, or they pretend that we really MUST seem fine…🤦‍♀️

If you would like to read and interesting article, please have a look here: 
Traumatic Brain Injury

Let me know what you think. Could be interesting for me that's for sure.

P.S.: The MRI scan was great this year, as all the aneurisms I have in my head have stopped moving / growing etc. Big yay!! Loving my surgeon…

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