Dear casual follower,
Last night i suggested going to the 9 am Harry Potter showing....
This was met with some interest but also concern from Colin... and a reluctant desire from Bernie (he's a closet Harry fan).
Colin, was worried that he might be wobbly and have a seizure whilst in the cinema.
Fair enough... i thought... he's been having a wobbly day and actually had two seizures today, so fair enough.
however, we always see the Harry Potter films together.... i know he really wants to see it. and i chose that showing because...its the first... its early in the morning... generally Colin doesn't start feeling wobbly until the evening (as i guess the meds start wearing off) , it wasn't busy (i had Checked) and we could all see it together as i will be working away a lot in the forthcoming weeks.
there was an understandable amount of doubt about a trip to the cinema being a good idea... so i thought... Big shame... but i understand.
Imagine the Joy then dear word reader, when this morning I received a knock on my bedroom door. it was 8.30. Bernie and Colin were up and we were going to see Harry Potter...
This was excellent news.
And well done to Bernie for his gentle pushing... and mostly well done to Colin for taking some steps forward. and getting out and about.
We went to see the film, and it all happened without incident. WOOTY TOOT TOOT
The film itself... i thought... was excellent.... really really well put together, and handled the story and its dark moments very well... also i'm so pleased they are doing ti as a double film, because even as film 1 and only half the book its still at times, felt slightly like there was too much story. But lovely work from all the actors, particularly liked Bill Nighy, and Alan Rickman did some cracking subtle acting, that should delight those who read the book.,,,
Anyway, the best thing is... Colin.
He Went, He saw, He concurred that it was a good film.
I am so so so so so so so so so so so so so so proud of him. After his seizures last night it was a clear, determined, and brave step to get out. and it was incident free, and i hope he reaps the benefits, not just that it was was good film, but, more i hope, its a step towards rebuilding confidence.
Chris xx
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Friday, 19 November 2010
Thursday, 18 November 2010
Sooooo... let's talk about CANCER! YAY! .... part one!
Dear Reader,
I want to talk about cancer.
There, I said it... I didn’t think I was going to.
I almost didn’t say it because, I’m unsure of the reason of why I’m blogging about it. It’s a mix of feelings. A need for support. A need to feel united with somebody.... anybody... who relates. An opportunity for others to find support. I also feel guilt, selfishness and betrayal for writing about it.
But I assure you... and probably myself... that it’s just something I feel like I need to do. A way to put in front of me things and feelings and thoughts, in a format I don’t want to feel like I’m on my own with. A way of viewing openly and honestly what’s going through my head.
Not every post will be about this... but this may be a theme from now on.
5 Minutes ago I just watched my best friend and house mate, have a seizure. As seizures go, it was a full seizure, with all the normal shaking, noises, flatulence and such that go with it.
If you are lucky enough to have never seen somebody seizure, then all I can say is, it does an odd little trick in your head. The first time you see a seizure it can stay with you a while. It’s not shock as such...well yes it is...but more it’s some deep down need to want to help a fellow human, but a total feeling of uselessness and hopelessness washes through you, that stays with you and kind of makes you feel... a bit surplus.
Oddly from then on you can see many many seizures, and deal with them just fine. It’s always the first one that gets you.... I do believe however, it’s a good and healthy thing to see, because it makes you learn about them, what to do about them, and future proofs you against them... as it were.
Anyway I digress.
Back to my best friend and house mate, from here on, I shall call him.... Colin Buttermuff.... because that’s not his name.
Colin Buttermuff has just had a seizure.
Colin Buttermuff then cried for a long time.
Colin Buttermuff has a brain tumor.
A BRIEF BACKGROUND
April 2010. Colin Buttermuff and the rest of us. (His Partner “Bernie Futtersnack”, Brother “Gorilla Spactula” and Girlfriend “Mctippy Heals”, younger brother “Pancake Spactula”, mother “Splenda Magenta Dufflehat”, and myself “ Chris ‘I’m on a diet which gives me the god given right to secretly eat your cake’ Barlow”) . All went on a camping (not in the gay way... although gays were present) holiday in Glastonbury.
Colin, Bernie and I went early. Erected some tents (not in the gay way) and out of the blue, Colin had an unexpected seizure, and most of the holiday involved waiting around a hospital awaiting results... that and Bernie unnecessarily killing a spider (I find that sort of thing hard to forgive... tut tut Bernie... tut tut.)
THE RESULTS?...... NOT GOOD!
Colin was diagnosed with a low level Glioma.... of the Astrocytomas variety.
In layman’s terms:
Roughly, that’s a very slow growing Brian Tumour made of brain matter. That grows in small firework/star like shapes.
Or for the total thickies like me:
He got stars in his head.
Now, tumours like this are apparently very VERY slow growing.... as in, they think (by they, I mean the qualified lot that always seem to want you to take your clothes off so they can have a feel. That, and, save your life) Colin may well have had this Glioma for around 10 years, if not longer, and in all that growing time it’s had no impact on how he lives, until now.
The result of which is, it’s been discovered late. Too late to operate. But this also can mean he could very well live a long and fulfilling life.
Then again, maybe not so long.... but, at the moment, it’s all very slow... with possibilities to manage it. :-S
Oh yeah... and it’s given him fecking horrid epilepsy.
The long and the short of it is.............
NOBODY UNDERSTANDS WHAT THE HOT FIERY HELL IS GOING ON!!
The truth is... there are treatments out there... there is research out there.... but they don’t really understand brain tumours. They can be very very slow growing and nothing happens for years and years and years.
Then sometimes they can suddenly speed up and change... for no reason. They can start to heal... for no reason.... they can cause epilepsy... and they don’t know why!!!
SO WHAT DOES THIS MEAN????!!!
This means that poor sods like Colin have to cope with this massive thwack of news, with no certainties, with epilepsy, a huge impact on there lives.... and simply not know what’s in store...
Basically... Colin is no different now, from how he was in January. When he was fine and healthy but still had the tumour. He just didn’t know about it. There was no epilepsy yet. He is perfectly healthy in many ways. The tumor itself is doing very little.... and growing so slowly that it is likely to do very little for a very long time.
It’s a good possibility that he could out live the rest of us, and have a better quality of life than the rest of us.
The fact that the tumour has caused Epilepsy is ‘sort of’ a side issue. It’s been caused by the brain tumour, but in essence, they are separate entities.
This means, with the right types and levels of epileptic drugs. They could manage the seizures. And Colin might live like every other healthy person for years and years and years. He could outlive us all!
There is, however, a few small problems there.... The words ‘Might’, ‘Could’, ‘Possibly’.
There are chances of very different outcomes.
IN THE NAME OF ALL THINGS DEEP FAT FRIED AND DRIPPING IN CHOCOLATE - HOW DOES A PERSON DEAL WITH THIS???!!!
How do you deal with something so huge and dramatic and life changing and horrid and terrifying... and yet ... maybe not?
And this is ultimately why I am writing this blog.
I guess I feel stupid, helpless, selfish.
Lost, confused, hopefully, cynical.
Because as a bystander, I don’t.... know.... what...to.... do....
It was an unfortunate timing that we received this news just before I had to leave on a tour. I felt like a total git for leaving for 5 months at such a time.... however, the contract was signed... there was no other work... Colin wanted me to go... and in truth, by being at home I could be supportive... but physically I could change nothing.
So I went... and obviously, stayed in touch and up to date.
I have now been back home for just under two months.
What I want to talk about is support and management of how people feel.
In the time I have been home I have seen Colin Buttermuff go from happy as Larry, pottering about, getting out and about, to wailing and crying, refusing to leave the house and simply living in abject terror and pain.
So daily ,As a bystander, who loves him, my question to myself is...
WHAT CAN I DO?!
Thus endeth part one....
xx
I want to talk about cancer.
There, I said it... I didn’t think I was going to.
I almost didn’t say it because, I’m unsure of the reason of why I’m blogging about it. It’s a mix of feelings. A need for support. A need to feel united with somebody.... anybody... who relates. An opportunity for others to find support. I also feel guilt, selfishness and betrayal for writing about it.
But I assure you... and probably myself... that it’s just something I feel like I need to do. A way to put in front of me things and feelings and thoughts, in a format I don’t want to feel like I’m on my own with. A way of viewing openly and honestly what’s going through my head.
Not every post will be about this... but this may be a theme from now on.
5 Minutes ago I just watched my best friend and house mate, have a seizure. As seizures go, it was a full seizure, with all the normal shaking, noises, flatulence and such that go with it.
If you are lucky enough to have never seen somebody seizure, then all I can say is, it does an odd little trick in your head. The first time you see a seizure it can stay with you a while. It’s not shock as such...well yes it is...but more it’s some deep down need to want to help a fellow human, but a total feeling of uselessness and hopelessness washes through you, that stays with you and kind of makes you feel... a bit surplus.
Oddly from then on you can see many many seizures, and deal with them just fine. It’s always the first one that gets you.... I do believe however, it’s a good and healthy thing to see, because it makes you learn about them, what to do about them, and future proofs you against them... as it were.
Anyway I digress.
Back to my best friend and house mate, from here on, I shall call him.... Colin Buttermuff.... because that’s not his name.
Colin Buttermuff has just had a seizure.
Colin Buttermuff then cried for a long time.
Colin Buttermuff has a brain tumor.
A BRIEF BACKGROUND
April 2010. Colin Buttermuff and the rest of us. (His Partner “Bernie Futtersnack”, Brother “Gorilla Spactula” and Girlfriend “Mctippy Heals”, younger brother “Pancake Spactula”, mother “Splenda Magenta Dufflehat”, and myself “ Chris ‘I’m on a diet which gives me the god given right to secretly eat your cake’ Barlow”) . All went on a camping (not in the gay way... although gays were present) holiday in Glastonbury.
Colin, Bernie and I went early. Erected some tents (not in the gay way) and out of the blue, Colin had an unexpected seizure, and most of the holiday involved waiting around a hospital awaiting results... that and Bernie unnecessarily killing a spider (I find that sort of thing hard to forgive... tut tut Bernie... tut tut.)
THE RESULTS?...... NOT GOOD!
Colin was diagnosed with a low level Glioma.... of the Astrocytomas variety.
In layman’s terms:
Roughly, that’s a very slow growing Brian Tumour made of brain matter. That grows in small firework/star like shapes.
Or for the total thickies like me:
He got stars in his head.
Now, tumours like this are apparently very VERY slow growing.... as in, they think (by they, I mean the qualified lot that always seem to want you to take your clothes off so they can have a feel. That, and, save your life) Colin may well have had this Glioma for around 10 years, if not longer, and in all that growing time it’s had no impact on how he lives, until now.
The result of which is, it’s been discovered late. Too late to operate. But this also can mean he could very well live a long and fulfilling life.
Then again, maybe not so long.... but, at the moment, it’s all very slow... with possibilities to manage it. :-S
Oh yeah... and it’s given him fecking horrid epilepsy.
The long and the short of it is.............
NOBODY UNDERSTANDS WHAT THE HOT FIERY HELL IS GOING ON!!
The truth is... there are treatments out there... there is research out there.... but they don’t really understand brain tumours. They can be very very slow growing and nothing happens for years and years and years.
Then sometimes they can suddenly speed up and change... for no reason. They can start to heal... for no reason.... they can cause epilepsy... and they don’t know why!!!
SO WHAT DOES THIS MEAN????!!!
This means that poor sods like Colin have to cope with this massive thwack of news, with no certainties, with epilepsy, a huge impact on there lives.... and simply not know what’s in store...
Basically... Colin is no different now, from how he was in January. When he was fine and healthy but still had the tumour. He just didn’t know about it. There was no epilepsy yet. He is perfectly healthy in many ways. The tumor itself is doing very little.... and growing so slowly that it is likely to do very little for a very long time.
It’s a good possibility that he could out live the rest of us, and have a better quality of life than the rest of us.
The fact that the tumour has caused Epilepsy is ‘sort of’ a side issue. It’s been caused by the brain tumour, but in essence, they are separate entities.
This means, with the right types and levels of epileptic drugs. They could manage the seizures. And Colin might live like every other healthy person for years and years and years. He could outlive us all!
There is, however, a few small problems there.... The words ‘Might’, ‘Could’, ‘Possibly’.
There are chances of very different outcomes.
IN THE NAME OF ALL THINGS DEEP FAT FRIED AND DRIPPING IN CHOCOLATE - HOW DOES A PERSON DEAL WITH THIS???!!!
How do you deal with something so huge and dramatic and life changing and horrid and terrifying... and yet ... maybe not?
And this is ultimately why I am writing this blog.
I guess I feel stupid, helpless, selfish.
Lost, confused, hopefully, cynical.
Because as a bystander, I don’t.... know.... what...to.... do....
It was an unfortunate timing that we received this news just before I had to leave on a tour. I felt like a total git for leaving for 5 months at such a time.... however, the contract was signed... there was no other work... Colin wanted me to go... and in truth, by being at home I could be supportive... but physically I could change nothing.
So I went... and obviously, stayed in touch and up to date.
I have now been back home for just under two months.
What I want to talk about is support and management of how people feel.
In the time I have been home I have seen Colin Buttermuff go from happy as Larry, pottering about, getting out and about, to wailing and crying, refusing to leave the house and simply living in abject terror and pain.
So daily ,As a bystander, who loves him, my question to myself is...
WHAT CAN I DO?!
Thus endeth part one....
xx
Subscribe to:
Posts (Atom)