Tuesday 7 June 2016

Latest results and for Nan x


Nan, a lady from Hollywood who I have met via this blog has sent an email to ask why I haven't written my blog for quite a while - Sorry Nan! This is for you! And I hope all is well x 


I sometimes hide from the world, not really for any reason, not for any dramatic effect.  My brain seems to short circuit  and its then needs time to re-generate. I need to collect my thoughts.  But then, like Nan, friends and family get worried and I know sometimes questions like "is he dead?" are subliminally asked.  But at least when I'm back in the mood for talking, it gives me the opportunity to surprise everyone in a Den Watts fashion. (When I say that, i mean coming back from the dead, not the thing what he was court doing over the internet). 

I guess this is a form of depression. I do get down at times, and I don't like to write with that tone of voice, so I don't.  I try my best to pick myself up and remember what it's like to be ill, and then I can truly appreciate that moment of now, whatever that represents, whether it's being with Rob or taking the dogs for a walk, working at the market, being with family, listening to music, whatever I am doing right now, whatever it is, I know what it's like to fully appreciate that, and that can be really powerful. 


Nan was one of the blog readers that have tried to encouraged me to write a book, well.... I'm sorry Nan, I failed! I have written some words and then got bored, and started again, and yet again got bored, and so on.... After lots of boredom, I looked at the words I had written and scrapped the whole of the paragraph. Blar blar blar - cancer - blar blar blar - not well, and so on.  I started to write about what I wanted to write about and I found my writing seemed easer to write, which is a bit strange as cancer is the main subject, but by not writing about it seemed more fluid.


I have loved writing this blog, and I think my best writing is when I decide not to care and speak my truth. (Then go back into that writing, edit and take away any words where anyone could take you to court for slander and realise out of that 200 page essay, I only have a title). 


My health right now is this, it looks like the cancer has come back for the 5th time.  I have had a scan after my bloods had gone funny, they can't see anything on the scan, but the doctor has said we will have to keep an eye on my bloods as in the past, it has shown it has come back, so they expect that is the same again.  I will find out more in the next coming weeks.  Cancer research are following this with cameras and I think they may use it on "Stand up to cancer" on Channel four, I never get used to results, life seems very surreal.  But please don't feel sorry for me, having cancer five times is not something I am doing wrong, it's something I am doing right, I am still here. 


So, here you are Nan, here is the ideas of a very loose first chapter, hope you like x

........................

Dear Cancer,

Thank you...

Most will find it strange why I am saying thank you, you have pushed me close to death a handful of times now, you have made me gravely ill, you have punished my partner and family and friends for no reason at all, and I still say thank you!

You see you have have also introduced me to lots of people, amazing people, nurses looking after the sick, doctors trying to find a cure, charity workers giving their hours to challenge you, people running, getting sponsored, doing everything from meeting up with friends for coffee mornings to bathing in a bath of beans, putting change into a bucket, all of them creating an amazing network and making good, and showing the true meaning of humanity, all types of people, all religions and all doing things for people like me.  We seem to live in a time where only negatives are shown on the news, well, I am very grateful you have shown me the amount of good in all people.

You have shown me what to and what not to worry about. You have evolved me, challenged me, and grown me, you have shown me my strength, and with that, I am thankful.

You have made me realise that I can accept my fate, but with that acceptance I also know that I have the power to challenge it, and I also know that miracles are possible, and each day when I awake, this confirms that.

Cancer, you have made me who I am, and with that, I am eternally thankful, and now with respect, will you please fuck off!  We can both walk away from each other and still honour each other with distance between us.

Sadly, it doesn't seem to be working in that way, so... If we can't do that, let's try and live in union for as long as possible.

Yes, you cancer at times make me feel scared, and I have sometimes cried. But I have learnt that If you are scared, then you are about to do something brave, and that makes you even stronger than before, so let's all raise our glasses to cancer.

Carl....


Something strange happens to you when you join the cancer club.  If I see someone in the street that has no hair I want to run up to them and hi-fi them, I feel an instant connection.  I have never done this, I am worried they may tell me to piss off it's alopecia.  I find I now have this connection with people I don't know. They know what it's like, they know the stress, the sickness, the reactions from family and friends, they know what it can do mentally and physically, and with that, strangers that have never met can hold a deep knowledge, and a bond.

"You have cancer"

It's strange what happens to you when the doctor says those three little words. You take time to try and understand them, You have cancer! - I was sat up right in the hospital bed, my legs trapped under the hospital sheet, I was more yellow with jaundice than Homer Simpson.

I looked at the doctor, - "Am I going to live?".  My voice pitch hit a height that I had never heard me produce before.  I was asking a very serious question, probably the most serious question I had ever asked in my life, but in the style of a Bee Gee.  The doctor didn't answer, maybe he didn't hear me? Maybe due to my new voice, he thought I was taking the piss, I asked again, yet again, sounding like I had taken bin liner full of helium, "am I going to live?" Yet again, the doctor was silent.  I felt I was watching TV and that none of this was truly real, I looked at the doctor, waiting, maybe he was going to reveal the answer in an X-factor style, leave a bit of time, a close up of me, is he going to live, isn't he?  A sound of a very fast heart beat played as background noise.

The hospital curtains around the bed drop, a fan-fair plays, and a fireworks would go off - YES YOU ARE!  Suddenly I would leap from my bed, the jaundice would make me glo in the dark, I would sing the winners song, half way though the song the other contestants/patients would leave there beds and join in singing - But no, none of that, the doctor just stayed silent, it's probably a good job, as I can't sing.


I had a need to walk,  movement would help me get my head around what had just been told to me, get up and walk, get up and walk, sudden thoughts, rushed through my head, cancer, cancer?
Walking down the hospital corridor, the high-pitched child like voice had filtered into my body language, I was sucking the bottom of my t-shirt like it was a man-made fiber dummy. Wide eyed, people were looking at me like I had escaped the ward in which the patients had been sectioned. 


That was over three years ago, and a lot has happened in those three years.  I have become an expert of pancreatic cancer, I have seen what it does, I have felt what it can do and in a nutshell I have experienced the physical and emotional side, and I have seen how it can also effect family and friends, some have ran towards me and others I haven't seen since been told, but Its no ones fault, no ones other than cancer itself.  Everyone deals with cancer in thier own way, most people have a personal experience, and this reacts to how people respond to it.  My doctors have said that I have had so much chemo I must be super-human. It's funny as due to the chemo, I don't really feel human anymore. 


I was truly traumatised.  My brain started to shut down to deal with what was happening. Writing made me categorise my thoughts and put them in some sort of order, and it helped heal. You use what you can to deal and fight this, and that may mean just putting some words on paper, I was not going to win any awards for my writing, but to me, it helped more than I ever thought it would.
I started to write a blog, part autobiography, part therapy. One day, I was a fit, young and healthy man and today I'm not, and the stuff in the middle is a blur.  I  was 38 and worried about hitting the 40 mark and just getting older, I then got cancer, and now I'm 42, and can not really remember getting to 40! The situation as scrabbled my head.  I wrote a lot about "The situation" in the blog, I had such an issue to spell out what that situation was - and with time, it became easer.


The situation is this -  with pancreatic cancer only three percent of patients will be alive after five years.  The situation is, that I was one of the lucky ones I was one of the 20 percent that could be operable, but sadly I was one of the 80 percent that it comes back to, and if it comes back, there is nothing they can do about it. I am now in the situation that I have managed to get rid of it 4 times, I am going on to 4 years, the situation is unique.


It was a very personal blog, but then others started to read it.  It felt a bit vulnerable but my attention seeking side is far larger than my vulnerability so I carried it on, and it was nice to get encouragement to write more, "maybe you should write a book" was suggested.

I have done something cheeky, I wrote the first chapter, when I say chapter, it was a couple of paragraphs, I can't really describe it as a chapter and I then charged everyone to read it! Now! Before you all think I'm evil, the money went to Stand up to cancer. 

With the money going to charity I thought I would encourage me to write more, it didn't quite work. The thing is I have tried to write this now for ages, and, if I am going to be honest, it bores me! It bores me to write about cancer.  To try and encourage me I have read what others have wrote about the subject.  I would describe the genre as spiritual/depressing.  

I have struggled with what to write about.  I know this is not going to sell this writing but the subject matter really bores me!  I have looked at others that have written about cancer, and titles like "The Long Goodbye" are not titles I would run out to read. I start but never finish, and if I am bored about writing about it, then let's be honest, it's not a good sign for the reader. But one day, it clicked!  I want to write a cancer blog, but not about cancer! 

Having cancer has not all been bad. I never would have thought that I would be giving my point of view against the government for talking drugs off the cancer list publicly on channel four news, and been described as "articulate!" (I still have recorded everdence of this).  I never thought I would be in the papers and TV and feeling some form of power over this terrible diesiece, and this empowered me.  Mum and I have been on posters around the country for cancer research after a nasty reaction to chemo, as terrible as the reaction was, the poster was a strong image that helped the campaign.  I have shouted about pancreatic cancer, but if I am going to be honest, sometimes that shouting is hiding the screams.  A friend said I do talk a lot about it, well, let's just say, I am doing that as I am trying to get my head around it all still.

One of the many lessons I have learnt is to change that inner-voice. The one that tells us we are not good enough.  I have spoke to friends about this and it seems we all have this inner-voice, that first edits our thoughts, and with that, then changes our actions. I have learnt that if I can handle cancer then I am not letting that voice control my life in a negative way and since then, I have put my business up for awards, and put myself in situations that I would not have put myself due to the fear of failing or the fear of what others would think.  The inner-voice, has not become silent, it has simply change tactics.  Instead of it saying don't, it says do.. It's saying go for it.  It now allows me not to try and fit in, which gives the freedom to stand out.

As I am writing this, I am on a plane, flying back from Orlando. This was to celebrate time off chemo, and yet again my bloods going to normal,(sadly while editing I have learnt that the cancer as comeback for the 5th time)  this was now the 3rd lot of chemo, now let me quickly tell you about chemo, in not the greatest of details, but, wow! It can make you sick! And there is this thing called chemo brain.
How I would explain chemo brain is like this - I can not remember information stored in the past.  So, if I say where were you when Diana died, we automatically go into our stored information in our brain and pull it to the front, I now seem to have difficulty in doing this. Don't get me wrong, I know where I was when Diana died, I was on back of a motorbike in Paris taking pictures - too soon? I guess when there is information given to me, I find it hard now to store that information, so when this is required I'm not sure where to pull it from.

One of the great things about getting cancer is its now ok to have the right to take the piss out of it, i would not advice this in certain socail situations, believe it or not the cancer jokes go down better in the chemo ward but I don't recommend using in public. 

I do often play the cancer card! I have been upgraded in hotels, had queue jumps at theme parks, I have been excused of driving fines for driving in bus lanes. If you haven't got cancer, it may be in bad taste to use these to your advantage but if you have cancer, I recommend.

Anyway, so here it the start of my writing, - many pancreatic cancer things are about being ill and death, this isn't, this ones about rebelling against cancer and making it all about life, and living.


3 comments:

  1. Carl, what an amazing and interesting blog. I have read your last blog entry from beginning to end. I know Peta and I have read many of your previous blog entries. You are such a fighter and I love the fact that you provide such an honest account and point of view. Thank you very much. I admire you. Noemi

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    Replies
    1. Thanks Noemi, that's a lovely message, thank you for reading xx

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  2. I like that. "If you are scared then you are about to do something brave and then you will be stronger". I think that is the only thing pancreatic cancer has done for me. But I have been lucky enough to be enjoying my life and will be celebrating 2 years soon.

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