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
Friday 19 November 2010
Thursday 18 November 2010
Sooooooo...Lets talk about CANCER! YAY!!.... Part 2
PART 2
Dear Peruser,
Let me give you some backwards glances into some of my previous experiences with disease...
My grandfather on my mothers side had suffered with cancer... but he had pulled through it... survived... and lived on... he eventually however suffered a stroke and died, just over a year after my mum died of cancer.
This take place between the ages of 10 and 12...
I lived with my mum. She was diagnosed with stomach cancer. After several aggressive surgery’s, a planet load of chemo therapy, and a PowerStation full of radio therapy , she eventually died within two years.
It was two years of agony for everyone.... god knows what she must have been going through in her head!
Two years of watching the most important person in your life go through pain, lose their hair, smell of chemicals, and ultimately die.
But!!! She NEVER stopped living. She got jobs, she cooked meals, she went out very often, wig on... and eventually giving up with them... wig off. She determinedly raised two children during that time. Apart from right near the end when after a holiday with our dad, my sister and I subtly didn’t go home, dad had taken over.
Even when she was most really quite ill and still in recovery from an operation, she would insist on answering the door...
I can still see her now hobbling across the room holding her tummy where the stitches / staples had been, from the op.
I even remember just days before she died, she was in a care home, and it was my sisters birthday, she barely made sense, and what she was saying was all jumbled up. Im not going to give details because what happened that day is deeply private to me. Suffice to say... she still managed to just about stagger through a very slow Happy birthday on the piano, in a way that made every note shake through me.
The point is...she lived... actually lived... right up to the last moments when, her body simply said no.... and she died.
The effect that had on me was... both devastating... but also enlightening.
As you can imagine, dear blog browser, that was my role model. That taught me that you have to work at life fearlessly and passionately because you don’t know what’s next for you. It’s led me to follow my heart so fiercely that it has at times caused great problems in my life.
But most importantly. You also realize that no matter what... there is always somebody worse off than you.
Also in the last year or so, I have had a cousin (29) killed by a bus. A childhood friend hung himself for being unhappy in himself. An older friend had a heart attack and died . A very wonderful teacher/boss/hero of mine died quite quickly of leukemia. An aunt died suddenly. And Last year I had quite a nasty cancer scare, and had to face that possibility.... it’s also a genetic risk in my family, and something that I am now being monitored on.... all of this has, of course, influenced my thoughts on death, my attitudes to life.
So what relevance does this have to my friend and house mate... Colin Buttermuff...well...
IT HAS LEFT ME IN A SITUATION...
Colin Is suffering.... Suffering badly....emotionally.
What’s making him immediately suffer is the epilepsy. This huge bastard thing that appears un-expectantly, embarrasses him, causes him extreme terror, anxiety, fear, tiredness, exhaustion and god knows what else.... but more importantly it’s a huge smack in the face reminder of his tumour.
A week ago, his family and I went out for dinner as a birthday celebration. Not long into the dinner, Colin had a seizure, a big one... the biggest in a long time.... (He is in the middle of a drug change, so the possibility of them happening was expected)... the surprise of the seizure, however, gave his Nan a bit of a funny turn.
The upshot is, he was devastated...felt terrible.... feels completely responsible... and has unshakingly remained so.
It’s been over a week. Colin has barely left the house. He sits in his room mostly. Getting him outside is an effort, and he does it with great reluctance. He is scared. Anxious.... and very depressed.
I love Colin very deeply. He is and has been one of the closest people to me for nearly 12 years. He knows more about me than any member of my family. And naturally, I hate seeing him like this.
I talked to him about how he was feeling... We talked at length.
I wanted to know what is going through his head... what is he basically feeling...
Essentially... He seems to have given up hope of living at all....
In fact he flat out refuses to engage with hope.
.... THERE IS NO HOPE INSIDE HIM....
Hope, to him, seems like he’s inevitably setting himself up to be disappointed, because he believes firmly that he will become a vegetable... and therefore, what is the point of living... what is the point of trying... what is the point of achieving anything in his life if that’s what’s going to happen to him... and it makes no difference if he has 5 years, 10 years, 50 years.... he is resigned that that is what is going to happen.
SO I talk to him... I try and encourage him to try living... to focus on the day in hand and to take it step by step.
He is refusing (at the moment) anti depressants... and although I completely agree it’s better for him to address and face the things making him sad and anxious... if he’s too depressed to do that... then what does that leave him. We also suspect that anxiety is often a trigger for his seizures.
I also have talked to him about trying to focus on the fact that he has no idea.... nobody has any idea... if what he fears (becoming mentally damaged) is even going to happen!
It is a likely hood... yes... but also between now and then there could be a great many years of living a perfectly normal life. (Once they find the right level of drugs for his epilepsy), there is also a very real chance he’ll live for a very long time and maybe even die of something else completely!
He has a brain tumour.... and now epilepsy.
Now, they haven’t yet cracked the meds with the epilepsy... they’ve been close but nothing has yet proved perfect... it has however only been about 6 months of trying... and as the doctor said, of the drugs he has tried, NONE of them have yet been tried properly, or in significant enough doses, and there are still other drugs out there / combinations... yet to try. However, Colin, I think, fears he might be one a very few whom they can’t treat perfectly...
However, he doesn’t have seizures every day, in fact there have been gaps of 3 or so weeks where he hasn’t had any really. A few tiny ghost ones here and there. But nothing significant. It’s during those times he starts to regain confidence. He starts to feel better about going out and about. Having a meal out.
But it takes just one to destroy all that work.... and at the moment he is very very very down.
NOW FOR THE SELFISH BIT.... CONCENTRATE...
The trouble I now have is two things:
1) I have all the time, sympathy, and understanding for him and his predicament... but I cannot pretend that deep down I dont feel a twinge of anger, and flash of annoyance....
He is a young man... and yes he has been dealt some bad news, and yes he has epilepsy. BUT! There are good things too.... right now he’s not a vegetable, right now is isn’t having seizures every day.... right now, they are trying to medicate the epilepsy, and its nearly there, give it a bit more time.... Right now he has have every opportunity to live a full life for potentially years and years to come.
I even find myself at times wanting to slap him and say... ‘GET A FERGY TOOTLING GRIP YOU SILLY ARSE!! THERE ARE PEOPLE WORSE OFF THAN YOU!’
I want to drag him around cancer wards, and show him children fighting off lukeamia.
I want to him to meet somebody with a high level glioma that’s been given two weeks to live.
I FURIOUSLY want him to just appreciate the sodding life he DOES have and WILL have for the foreseeable future and not fugging waste it sat moping in his room.
I want him to realise that with this bad news comes the opportunity to face your mortality and make the most of your life... to make a difference in the world however small or great, and don’t waste the few good things you have been given.
I want him to consider that, the truth is anyone could have a brain tumour.... there is no public testing system... and anyone could find out when it’s too late. Any of us, could have one and we won’t know until we have developed epilepsy. And that the only difference between now and March this year is that he knows about it.... he’s had it for 10 years.... but only now does he know about it... and it that knowledge that’s making him choose to give up...
I want him to realise - what’s the point of giving up today because he’s going to be giving up for many many many years... why not wait until he’s really in the muck...and then consider giving up... that would be a start....
I want him to see that people much worse off than him (LIKE MY MUM FOR EXAMPLE) had more determination, and zest to fight and live...
I want him to accept that unlike my cousin (same age) who had his life taken from him devastating his family... Colin has the opportunity to look ahead and make the most of now.
.....but the thing that makes me cross the most is..... I WANT HIM TO REMEMBER THAT HE IS STRONGER THAN THIS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
All the things I have written there probably make me sound angry, selfish and that I have totally misunderstood what Colin is going through. And yes I can see that.
But dear reader, please believe me, I haven’t.
What I am doing is being honest. The whole point of writing this is, I guess, is a chance for me to be honest. These are things I haven’t said to him... and probably won’t.
But they are things that have at times flashed through my head... feelings I have that just simmer deep inside. And although they may sound harsh, I think there is some justification, and reasons there that I feel them. They are not coming from a bad place... they are coming from a place desperate for Colin to find a way of living again.
2) My other problem is... I feel an overwhelming sense of guilt at the moment. I don’t know how to conduct my life.... I like to get up and go out, I’m fierce with my career, I spend nearly every waking hour doing something, be it painting, puppet making, writing, job hunting, working... ANYTHING... just doing something productive.
In a way I am the opposite of Colin. I am so so terrified of dying young, from seeing my mum die young, my family dying off, having a scare with cancer... having to be watched because I’m a high risk of getting it. I am SCARED TO DEATH!!!! Of dying young....
But the consequence of that is I want to achieve EVERYTHING NOW! I’m 27 and I’m pissed off I’m not at the top of my career.... I want to publish a book, I want to illustrate kids books, I want to tour more, I want to make films, I want to write and produce my comedy series, I want to fall in love... and I want ...no... I feel, I desperately need to do it now! Just in case I die tomorrow.
More importantly...
I want to touch peoples lives. If I was to die tomorrow, I want people to be at my funeral thinking, what a shame, he brought something good to my life...
I want to leave a positive mark on the world in some way.... it’s an almost feverish desire.
I guess, therefore, it my desire to live, that’s at odds with Colins desire to give up...
But also, I feel terrible for going out, and trying to do these very things.
I simply feel bad about doing things, and him not coming.... or him sat at home being sad...
But what can you do? If I stay at home all day everyday, I’ll not be a good influence on him eventually. But then not being here, I guess I’m not being supportive...
It’s left me. Unsure of myself.
This has taken me a long time to write, so I’m going to wrap it up now... as I don’t need to reach a conclusion, and the point of this is to discuss view and develop my thinking, over time and into the future.
However, I will finish by saying this.
Right now I’m at a loss.
I don’t know what to do.
I want to help Colin.... and I want to help him be happy. But he is very depressed.... and to be honest... fair enough... he has every right to be and every reason to be... but I want to help him live.
And the thing that upsets me most is this..
No matter how much support... no matter how well he does.... no matter how much we can help, and no matter how much improvement he makes.... just when we think we see glimmers of hope and happiness..
Colin is hit with a seizure like the one he just had... and then follows the tears.... and then follows the unravelling of all the good work he had achieved.... and to be completely honest.... I’m not surprised... the seizures are bloody horrible for him to go through... and it’s heart breaking and sickening to see the emotional and physical devastation they leave him with. They seem to be a force that neither he nor us can compete with.... and they seem to be winning.
And when I see them...
... I’m sat feeling... hopeless... like a useless friend.
Chris xx
Dear Peruser,
Let me give you some backwards glances into some of my previous experiences with disease...
My grandfather on my mothers side had suffered with cancer... but he had pulled through it... survived... and lived on... he eventually however suffered a stroke and died, just over a year after my mum died of cancer.
This take place between the ages of 10 and 12...
I lived with my mum. She was diagnosed with stomach cancer. After several aggressive surgery’s, a planet load of chemo therapy, and a PowerStation full of radio therapy , she eventually died within two years.
It was two years of agony for everyone.... god knows what she must have been going through in her head!
Two years of watching the most important person in your life go through pain, lose their hair, smell of chemicals, and ultimately die.
But!!! She NEVER stopped living. She got jobs, she cooked meals, she went out very often, wig on... and eventually giving up with them... wig off. She determinedly raised two children during that time. Apart from right near the end when after a holiday with our dad, my sister and I subtly didn’t go home, dad had taken over.
Even when she was most really quite ill and still in recovery from an operation, she would insist on answering the door...
I can still see her now hobbling across the room holding her tummy where the stitches / staples had been, from the op.
I even remember just days before she died, she was in a care home, and it was my sisters birthday, she barely made sense, and what she was saying was all jumbled up. Im not going to give details because what happened that day is deeply private to me. Suffice to say... she still managed to just about stagger through a very slow Happy birthday on the piano, in a way that made every note shake through me.
The point is...she lived... actually lived... right up to the last moments when, her body simply said no.... and she died.
The effect that had on me was... both devastating... but also enlightening.
As you can imagine, dear blog browser, that was my role model. That taught me that you have to work at life fearlessly and passionately because you don’t know what’s next for you. It’s led me to follow my heart so fiercely that it has at times caused great problems in my life.
But most importantly. You also realize that no matter what... there is always somebody worse off than you.
Also in the last year or so, I have had a cousin (29) killed by a bus. A childhood friend hung himself for being unhappy in himself. An older friend had a heart attack and died . A very wonderful teacher/boss/hero of mine died quite quickly of leukemia. An aunt died suddenly. And Last year I had quite a nasty cancer scare, and had to face that possibility.... it’s also a genetic risk in my family, and something that I am now being monitored on.... all of this has, of course, influenced my thoughts on death, my attitudes to life.
So what relevance does this have to my friend and house mate... Colin Buttermuff...well...
IT HAS LEFT ME IN A SITUATION...
Colin Is suffering.... Suffering badly....emotionally.
What’s making him immediately suffer is the epilepsy. This huge bastard thing that appears un-expectantly, embarrasses him, causes him extreme terror, anxiety, fear, tiredness, exhaustion and god knows what else.... but more importantly it’s a huge smack in the face reminder of his tumour.
A week ago, his family and I went out for dinner as a birthday celebration. Not long into the dinner, Colin had a seizure, a big one... the biggest in a long time.... (He is in the middle of a drug change, so the possibility of them happening was expected)... the surprise of the seizure, however, gave his Nan a bit of a funny turn.
The upshot is, he was devastated...felt terrible.... feels completely responsible... and has unshakingly remained so.
It’s been over a week. Colin has barely left the house. He sits in his room mostly. Getting him outside is an effort, and he does it with great reluctance. He is scared. Anxious.... and very depressed.
I love Colin very deeply. He is and has been one of the closest people to me for nearly 12 years. He knows more about me than any member of my family. And naturally, I hate seeing him like this.
I talked to him about how he was feeling... We talked at length.
I wanted to know what is going through his head... what is he basically feeling...
Essentially... He seems to have given up hope of living at all....
In fact he flat out refuses to engage with hope.
.... THERE IS NO HOPE INSIDE HIM....
Hope, to him, seems like he’s inevitably setting himself up to be disappointed, because he believes firmly that he will become a vegetable... and therefore, what is the point of living... what is the point of trying... what is the point of achieving anything in his life if that’s what’s going to happen to him... and it makes no difference if he has 5 years, 10 years, 50 years.... he is resigned that that is what is going to happen.
SO I talk to him... I try and encourage him to try living... to focus on the day in hand and to take it step by step.
He is refusing (at the moment) anti depressants... and although I completely agree it’s better for him to address and face the things making him sad and anxious... if he’s too depressed to do that... then what does that leave him. We also suspect that anxiety is often a trigger for his seizures.
I also have talked to him about trying to focus on the fact that he has no idea.... nobody has any idea... if what he fears (becoming mentally damaged) is even going to happen!
It is a likely hood... yes... but also between now and then there could be a great many years of living a perfectly normal life. (Once they find the right level of drugs for his epilepsy), there is also a very real chance he’ll live for a very long time and maybe even die of something else completely!
He has a brain tumour.... and now epilepsy.
Now, they haven’t yet cracked the meds with the epilepsy... they’ve been close but nothing has yet proved perfect... it has however only been about 6 months of trying... and as the doctor said, of the drugs he has tried, NONE of them have yet been tried properly, or in significant enough doses, and there are still other drugs out there / combinations... yet to try. However, Colin, I think, fears he might be one a very few whom they can’t treat perfectly...
However, he doesn’t have seizures every day, in fact there have been gaps of 3 or so weeks where he hasn’t had any really. A few tiny ghost ones here and there. But nothing significant. It’s during those times he starts to regain confidence. He starts to feel better about going out and about. Having a meal out.
But it takes just one to destroy all that work.... and at the moment he is very very very down.
NOW FOR THE SELFISH BIT.... CONCENTRATE...
The trouble I now have is two things:
1) I have all the time, sympathy, and understanding for him and his predicament... but I cannot pretend that deep down I dont feel a twinge of anger, and flash of annoyance....
He is a young man... and yes he has been dealt some bad news, and yes he has epilepsy. BUT! There are good things too.... right now he’s not a vegetable, right now is isn’t having seizures every day.... right now, they are trying to medicate the epilepsy, and its nearly there, give it a bit more time.... Right now he has have every opportunity to live a full life for potentially years and years to come.
I even find myself at times wanting to slap him and say... ‘GET A FERGY TOOTLING GRIP YOU SILLY ARSE!! THERE ARE PEOPLE WORSE OFF THAN YOU!’
I want to drag him around cancer wards, and show him children fighting off lukeamia.
I want to him to meet somebody with a high level glioma that’s been given two weeks to live.
I FURIOUSLY want him to just appreciate the sodding life he DOES have and WILL have for the foreseeable future and not fugging waste it sat moping in his room.
I want him to realise that with this bad news comes the opportunity to face your mortality and make the most of your life... to make a difference in the world however small or great, and don’t waste the few good things you have been given.
I want him to consider that, the truth is anyone could have a brain tumour.... there is no public testing system... and anyone could find out when it’s too late. Any of us, could have one and we won’t know until we have developed epilepsy. And that the only difference between now and March this year is that he knows about it.... he’s had it for 10 years.... but only now does he know about it... and it that knowledge that’s making him choose to give up...
I want him to realise - what’s the point of giving up today because he’s going to be giving up for many many many years... why not wait until he’s really in the muck...and then consider giving up... that would be a start....
I want him to see that people much worse off than him (LIKE MY MUM FOR EXAMPLE) had more determination, and zest to fight and live...
I want him to accept that unlike my cousin (same age) who had his life taken from him devastating his family... Colin has the opportunity to look ahead and make the most of now.
.....but the thing that makes me cross the most is..... I WANT HIM TO REMEMBER THAT HE IS STRONGER THAN THIS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
All the things I have written there probably make me sound angry, selfish and that I have totally misunderstood what Colin is going through. And yes I can see that.
But dear reader, please believe me, I haven’t.
What I am doing is being honest. The whole point of writing this is, I guess, is a chance for me to be honest. These are things I haven’t said to him... and probably won’t.
But they are things that have at times flashed through my head... feelings I have that just simmer deep inside. And although they may sound harsh, I think there is some justification, and reasons there that I feel them. They are not coming from a bad place... they are coming from a place desperate for Colin to find a way of living again.
2) My other problem is... I feel an overwhelming sense of guilt at the moment. I don’t know how to conduct my life.... I like to get up and go out, I’m fierce with my career, I spend nearly every waking hour doing something, be it painting, puppet making, writing, job hunting, working... ANYTHING... just doing something productive.
In a way I am the opposite of Colin. I am so so terrified of dying young, from seeing my mum die young, my family dying off, having a scare with cancer... having to be watched because I’m a high risk of getting it. I am SCARED TO DEATH!!!! Of dying young....
But the consequence of that is I want to achieve EVERYTHING NOW! I’m 27 and I’m pissed off I’m not at the top of my career.... I want to publish a book, I want to illustrate kids books, I want to tour more, I want to make films, I want to write and produce my comedy series, I want to fall in love... and I want ...no... I feel, I desperately need to do it now! Just in case I die tomorrow.
More importantly...
I want to touch peoples lives. If I was to die tomorrow, I want people to be at my funeral thinking, what a shame, he brought something good to my life...
I want to leave a positive mark on the world in some way.... it’s an almost feverish desire.
I guess, therefore, it my desire to live, that’s at odds with Colins desire to give up...
But also, I feel terrible for going out, and trying to do these very things.
I simply feel bad about doing things, and him not coming.... or him sat at home being sad...
But what can you do? If I stay at home all day everyday, I’ll not be a good influence on him eventually. But then not being here, I guess I’m not being supportive...
It’s left me. Unsure of myself.
This has taken me a long time to write, so I’m going to wrap it up now... as I don’t need to reach a conclusion, and the point of this is to discuss view and develop my thinking, over time and into the future.
However, I will finish by saying this.
Right now I’m at a loss.
I don’t know what to do.
I want to help Colin.... and I want to help him be happy. But he is very depressed.... and to be honest... fair enough... he has every right to be and every reason to be... but I want to help him live.
And the thing that upsets me most is this..
No matter how much support... no matter how well he does.... no matter how much we can help, and no matter how much improvement he makes.... just when we think we see glimmers of hope and happiness..
Colin is hit with a seizure like the one he just had... and then follows the tears.... and then follows the unravelling of all the good work he had achieved.... and to be completely honest.... I’m not surprised... the seizures are bloody horrible for him to go through... and it’s heart breaking and sickening to see the emotional and physical devastation they leave him with. They seem to be a force that neither he nor us can compete with.... and they seem to be winning.
And when I see them...
... I’m sat feeling... hopeless... like a useless friend.
Chris xx
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
Serious Stuff?
You know,
I think one of the reasons I am dreadful at updating this blog is because I try and keep it cheerful and frivolous.... or educational.
Now, I have been working on many projects of late, but many I can’t share with you because of copy write reasons or because they are private projects I want to keep under wraps until I have them finished.
So I ask myself, what do I write about. What should I discuss... and why would anybody want to read it.
Well as I said, my problem is that I try and keep this blog light and fluffy and straightforward. Everything life never is.
And that’s my problem. I’ve always been at my best when talking about real things. And so dear reader, I am going to bump this blog up into the realms of real life and talk about some serious stuff.
This is a warning....
The next post is the serious stuff.
Love
Chris x
I think one of the reasons I am dreadful at updating this blog is because I try and keep it cheerful and frivolous.... or educational.
Now, I have been working on many projects of late, but many I can’t share with you because of copy write reasons or because they are private projects I want to keep under wraps until I have them finished.
So I ask myself, what do I write about. What should I discuss... and why would anybody want to read it.
Well as I said, my problem is that I try and keep this blog light and fluffy and straightforward. Everything life never is.
And that’s my problem. I’ve always been at my best when talking about real things. And so dear reader, I am going to bump this blog up into the realms of real life and talk about some serious stuff.
This is a warning....
The next post is the serious stuff.
Love
Chris x
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