What do you wish someone told you when you were first diagnosed with a brain tumour?

There are so many levels to this question… 

My first instant reaction is I wish I had been told:   

“That you will still be alive almost 3 years later!”

as just knowing I would get through the operation would have calmed my first fears…

I also certainly admit the fact that I WAS told that it was a hemangioblastoma as soon as I saw the scan photo and that 'they are slow growing, non cancerous tumours and can be fully removed during surgery' was a massive help in itself! Some positivity in the terror…

Certainly in the wish there would most definitely have been an:

 “I’m so sorry we didn’t listen to you, we truly fucked up in not diagnosing or referring you, or even realising there was an issue” 

from the doctors at Giggs Hill - my GP surgery.   

A personal sorry. 

Bringing me round some flowers or a card. 

Actually saying and meaning sorry, admitting they messed up and were at fault for not picking up any concern from my symptoms… 

(I’m still waiting Dr Vo and Dr Milne - better late than never...)

But trying to work out what else I would have liked to have known, left me muddled, as I don’t know what order of things, if at all, I would have liked to have known… 

• If I knew pre op that I wouldn’t feel ‘normal’ for a very long time, would it have upset me? 

Yes I am pretty sure it would have.

• If I had been told that I would leave hospital after 48 hours, would it have reassured and calmed me massively? 

Yes, just the thought of staying in for 5-9 days after surgery was terrifying.

• But if I had been told that I would leave hospital and come home with what felt like no support, would it have scared me? 

Yes for sure.

• That my vision would not be the same almost 3 years later, and I would still struggle to see things close up? 

Destroyed.

• That my abilities would change - that I would struggle to multitask or even cook dinner; forget how to spell or even think of the correct words, let alone struggle to say them and it take ages to get better? 

I wouldn’t have wanted to know, I couldn’t have coped.

• That my hair would cover the scar almost straight away, then grow back and no one could ever see it?

Massive relief, like someone telling me I no longer needed a limb amputated!

• That I would be able to go back and listen to my husband’s bands playing rock music a few weeks after? 

That part of me will still be there. Gratitude.

• If I was told I would have a numb, lumpy and dented head forever, a dip in my neck and none of it will ever feel the same? 

It would have been hard to accept, as don’t think you can fully understand until you can actually physically feel and understand what a numb skull means…

It took a couple of weeks after diagnosis to be told:

 ‘Your head might never feel the same, but you'll be alive’… 

I wish I’d been told that when I was diagnosed. 

The same words that have come to haunt, as well as comfort me, many a time since.

…in fact that is the hardest part. 

Not knowing. 

Finding out your own answers from struggle and time. 

Not knowing if the extreme dizziness after surgery would last for a week, a month or years. Even the neurosurgeons don't know. If you knew you only had another week to cope with, you could face it easier, not feel so down and defeated and just damn exhausted. It’s the not knowing that’s hard. Not having a crystal ball.

Other brain tumour survivors that I asked, who have had the same type of tumour, also had similar feelings:

"D'you know, it's probably a completely 'backwards' way of thinking, and not really answering the question, but I was so delighted to be told I had a brain tumour, having suffered horrendously for 3 months where it was feeling more and more like my GP practice thought I was making it all up, that confirmation that I WAS seriously ill was more than I could have hoped for.
It was an enormous relief!"

"I am sorry that I was not told how much suffering and struggle the recovery might cause - that it would change my life and my abilities. All the info given was based on the tumour and it's removal."

 

"I thought I'd have the op and be the person I had been 4 years before all the symptoms started. I'm worse now and can't work."

Although I am very grateful for not being religious after hearing this comment!:

"They would encourage me, instead of telling me that it may be a punishment from God. And that I need to search whom I had wronged and ask them for forgiveness!"

How punishment can come into it, I have no idea! 😳

And if you also had a brain tumour...please comment as to what you wish you had been told. 

❓❓❓

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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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Please don't say this to someone after brain surgery...

I know I don’t process things the same as I did a few years ago, events and conversations now replay in my head until I work them out. Sometimes it can be a few minutes later, sometimes it’s a few weeks!

This one has been going round and round my mind…

When I was out several weeks ago the person I was talking to has known me for about 5 years, they knew I had a brain tumour removed and also knew from talking to me previously that I still had some side effects. But they aren’t a close friend and as far as I know haven’t read my book or blog and probably sees me as being ‘back to normal’ as, in their eyes, I do what I did before when I occasionally see them.

I had for some reason mentioned something about ‘saying the wrong word again and it not ever being the same since I had my surgery’. I wasn’t after sympathy, just understanding. Clarification. As I often feel very self-conscious and judged that I can start saying the wrong things and appear drunk or stupid at times, especially when I am clumsy too. If someone doesn’t know my reason why, then I am sure they are judging me negatively.

But instead of understanding, the person said:

‘You can’t always blame it on that you know’,

 and awkwardly laughed. 

I laughed back and walked away ...  Trying to decide if this was meant as a joke, as a way of saying ‘you are no worse than the rest of us and we all do similar', ‘stop going on about it’, that I ‘should be ok and over it’ now, that I was in a pub and no one else there would even notice, or even implying that I have always been stupid?!  😝

But the words were still festering in my head… 

I hate having to try and explain something quickly, to be asked a simple question or give a quick reply. I almost always feel an idiot when I open my mouth. Judged as stupid. When I am not so rushed and am not stressed I can have hours where I feel in control. 

Yet the times when I hate it, I want to tell people the reason. So they might realise my brain is maybe not working as perfectly as it should, not that I am stupid or it isn’t working at all. So they know I’m not drunk, and they can't say things I won’t remember…

Why can’t people talk honestly with me? Ask about how it makes me feel? 

I am sick of people saying 

‘No one would know’

… of course they would if they gave it more than a few seconds thought. I guess yes they might not know I had a brain tumour, no one can see that scar, but surely they would know I have ‘some’ kind of issue at times? 😬

• Do people not hear things in the same way I feel that I speak? 
• Do they not notice it when I randomly say something odd or can’t find a word? 
• Maybe they just think I sound like anyone else up the pub and why am I even caring? 
• That I just say simple words, as maybe a foreigner would? 
• Maybe they are too polite to say anything? 

But then it seems there are two different approaches from people who know you have had health issues:

One is where someone (and it doesn’t even have to be a close friend, but someone who knows what happened) walks up and says:

How are you doing? How is your health? 

And possibly even adds in the phrase: 

And how are YOU (dealing with it) now?

... Whilst listening! 💖

The other type is where people ignore you, pretend nothing ever happened, that nothing is wrong now and act like your life smells of roses! If you mention something about your health they don’t want to hear, or cannot face, then the act like they haven’t heard you, quickly change the subject or give their opinion while not listening at all. 

Occasionally they will say something like:

“I had vertigo once for a few days, it was horrid” 

or 

“Just have a drink and forget about it” 

– maybe they are meaning to be helpful (I try and take it that way!) but sometimes I want to scream… 

“Seriously? I spent 6 whole months feeling drunk 24/7, not able to eat without spinning, laying down at night and feeling the room move, watching TV gave me nausea, unable to ever 'sober up' before it started again. 

I wanted to focus but I couldn’t, yes my body acted drunk but my brain wasn’t inebriated – it was desperately trying to control the situation, to control the panic. 

Do you SERIOUSLY think I want to drink to FORGET it???” 

  😵😵😵

But this said, I don’t think many people do think, and even less want to upset you on purpose. I just don’t think anyone can truly understand unless they have been there or somewhere very close… 

But please, if you are ever with anyone who has a health issue and mentions something, just say 

“How are you managing at the moment?” 

and LISTEN.

and please...

Don't ever say "Have a drink and forget about it!"

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WHY??

Why?

Why is this world obsessed by beauty?

Why is this world fascinated with new?

We are we made to believe in perfect?

Why are our feelings distorted from true?

Why do people not care for others?

Look after what’s here and not start anew?

People are killing, people are dying

Wars forever, on what ‘the bad’ do

How do they manage to divide us?
Make them not human, say the untrue?

People are human and yet they’re the enemy

They are ‘a bad bunch’, it’s not just a few

So we bomb them, destroy them

Call them a Muslim, a terrorist or Jew

Say why they’re different, say they’re not like us

Block out our feelings and subdue

Elderly dying, no money to help them

Food banks for workers, just care for the few

The homeless have nothing, the kids with no dinners

Why don’t we stop this? It’s not taboo

We are paraded with fashion, like it all matters

Need new gadgets, a house with a view

The grass is always greener, your life will be better

Everything valued in what goods you accrue

And while we are lusting, wanting the latest

We’re distracted away from all the rich do

Tax evasion, controlling, tracking devices

But call them ‘smart’phones – do you have a clue?

Shares in arms, they make their money

Take others resources, kill the animals too

But people still but it, people still buy things

‘We are here to help’- if only they knew!

There’s no profit in caring, no profit in love

No control of the people and all that they do

Keep them sedated, fighting the irrelevant

Too poor to argue – we don’t need a coup

Divide and conquer, keep them distracted

Trump, Putin or Brexit – it all makes me spew

We need to wake up, we’re destroying the planet

The animals living here, and ourselves too

We need to stop sleeping, awake from our slumber

Have heroes who matter, change things and imbue

Ethical business, stop feeding the greedy

Not people who only make money from you

You don’t need an iPhone to be someone special

Fake nails, fake hair fake tits – just be YOU!

There’s no money in natural, no profit in reality

Stop feeding the greedy, it’s long overdue… 

 🙏

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