Thursday, 27 October 2016

Confessions of Buffalo Bill

So, I like to think that when you read my wafflings and rude stories your experience is heightened by knowing who is typing them. You know what I'm going through. I have incurable Inflammatory Breast Cancer and my little girl is in heaven. 
I think you think  'wow she's tough. She's so in control. She's so brave.' I'll let you in on a little secret....I'm manipulating you. 
You may have read my posts over the last 12 months and believed that my face doesn't change. That it is was fixed firm when the wind changed. You believe that every day I'm 100% positive. I'm sorry to break it to you. It's not true!!! I'm a fake. I'm wearing someone else's skin...I, my friends, am Buffalo Bill. 

I take ages to update you, some of the things you read happened bloody ages ago. Then I tell you stuff that isn't in chronological order. Then I skirt over things like they aren't important. Then I mask everything with humour. 
But why am I doing this? 
Because it works. 
Plain and simple. Writing helps me. Humour helps me. Positivity really helps me. It works. I feel bloody fantastic!!! Not only that, I'm convinced that I will outlive my statistics by a country mile. That's not my skin suit talking...that's the truth. 

But when things go bent I do cry and get hysterical and feel sorry for myself. I then blame myself and then I'm angry with myself for blaming myself. I've got enough to deal with without being mad at me! It's not fair to me! 
So, who can I be angry at? Whose fault is it that I'm here?  
It's no ones fault is it. There is no blame. Therefore, there can't be any anger. 

Hysteria does appear from time to time...its about how you bounce back. I tend to follow this pattern: positivity - bad news - hysteria - humour - positivity. 

I had my boob off in July. A few days later, a rash appeared below my scar. I thought it was just a reaction to surgery, someone may have left their tool on my chest whilst operating (wahey). So I watched the rash for a few weeks and then I went to Camp Bestival with Noah (I didn't take Tait as I thought he'd end up licking a portaloo). I had some quality time with the threenager, we went on the official biggest bouncy castle in the world. I got whacked in the face by some hero dad doing a flying karate kid reenactment for his uninterested 4 year old. 

I came back room the festival and announced to Scouse that I had a new rash. He was instantly on it, pushing me onto the phone to get an appointment. I think he sharted a bit too, he hid it well though. 
We got in the car to the Breast Clinic and I blurted out the following without coming up for air....

"I don't  wanna die. I'm too young. If it's back then I'm definitely and officially dying the boys will grow up without me and they won't remember me and Tait is only two he won't have a fucking clue who I am and what if you meet someone else and they move into my house and the boys start calling her mum and they introduce her as their mum at parents evening and the only memories they have of me are false ones enforced on them by you and my mates and what if she's mean to them and what if they love her and what if they think I've abandoned them one day when I don't come home and what if this woman lives in my house and you get married and then divorced and she takes all our money. What if she wants to move away and then my mum can't drive and won't see the boys everyday and what if my friends all like her and what if they think she's a cunt and what if I can't come back and haunt her and what if I can and what would I say and what would my code word be so that people knew it was me coming through from the other side it would have to be something rude like 'pull my finger' or I had threatened gemma with putting sanitary towels on her bathroom mirror instead of REDRUM. Which is funny isn't it and what if I have a long drawn out death in a hospice and have to keep saying goodbye and what if I get hit by a bus tomorrow and I've spent all day wondering how I'll haunt someone"

And breathe........

For fucks sake people, I can tell you it wasn't pleasant!!!!

I then looked up into the sun visor mirror and squashed my forehead fat together 'whoa what the fuck was that?' I thought.
I looked over at Scouse and he'd gone grey. He reached out a hand to me and instead of 'don't worry you're not gong to die' he said  'I know you're scared and I understand'. That's exactly what I needed to hear. No one really wants to be told they're acting irrational when in fact I believe it was one of my most rational moments I'd had.
I'm not referring to Scouse getting a new woman, I'm referring to the fear of death. 
I'm not overly concerned about a new girlfriend because you can't improve on perfection (yeah alright, other than my cancerous body) So I'm aware I'm a hard act to follow. 
We all die!!!! I hate to break it to you, but we all die. 
I am not scared of death. I am scared of my heart breaking when I say goodbye. I've done it before with Ally. It's a pain that rips through every part of you. A pain so crippling that you believe you will die from it.
I'm scared that the boys will think I've just left them one day. That I didn't bother to come home. I'm scared they won't have real memories of me. 

Are these fears irrational? No. No they are not. They are irregular not irrational
Not many people have to face their death. It's irregular to be constantly facing the thought that you may die soon. But let me tell you, it's a completely rational fear.  And one that has taught me a lot. That classic lesson of trying to live in the now just in case you get hit by the X3 to Cribbs Causeway. You need to bridle that fear and ride it like a fucking master!!!

I go for the appointment about the rash. There are a few back and fourths around what they think this rash is as they are all convinced it's not Cancer. Just a normal everyday rash. So simple. 
But they were wrong. 
Not unlike fake butter...its spread. 
This bastard cancer has now spread into my skin. 
Did you know you could have breast cancer in your skin? I have breast cancer in my lungs AND my I don't have little tits growing on my skin or bazookas in my lungs...its the live cancer cells from my Inflammtory breast cancer in those places. They have spread. 
What does this mean? Well it's not good news. It means my drugs are no longer working so for a second time we move to new ones. 
I'm gradually working my way down the menu and what started off as Ribeye steak is gradually becoming yesterday's leftovers. 
You start with the best thing in the market and work your way down. 
I'm now on a drug called Kadcyla. My oncologist has assured me though that this can be thought of as just as good as the last drugs, just different. Maybe a better fit.
Kadcya....A weird name. When I went for the first treatment of this drug 3 weeks ago my mum said "ere, you avin that Cadfael today?" Yes. Yes I am. I will spend all day riding a Benedictine monk who solves crimes over my shoulder. Phowaor. 
Now those of you that pray, please, I'd appreciate a little nod in my direction and those that don't can you cross your fingers with the intensity of taking a dump after three weeks of carbs.
I need these drugs to work miracles. 
I asked about 'numbers' again....people who start this drug live an average on 2.5 years if they work, if they don't, we are talking months. 

Well this is not acceptable!!! Noah starts school in September next year, Tait has just turned two, I have a new nephew arriving in January who has the best name ever  and Scouse is still refusing to eat fruit!!!!! I need to hit these mile stones. It's non negotiable. 

Now I appreciate this is awful news and you are now maybe a little sad. For different reasons...some will be sad as they are parents and are scared for me, some are sad because it might mean I can't write this blog when I'm dead (quija board?) and some are sad because they won't have me in their lives anymore. 
Can I just say that despite this latest news I'm not telling myself I have a short time left. Absolutely not!!! I'm not having it and quite frankly this cancer can go blow itself
I see myself in my 40s you fucking cunt!!! Kiss my crinkly brown star!!!! FUCK YOU!!!!!!!! FUCKKKKK YYYOOUUUUU!!!!!! 

And as much as I will enjoy haunting everyone, in a humorous manner, I'm not getting there just yet!!! I'm alive!!! I've never been more alive in my life! 
And I'm not going anywhere. Bears Grylls is right! Drink your own piss to survive and POSITIVITY POSITIVITY POSITIVITY
It's so much better then giving up.

Keep your skin suit for when you need it (mine has been made from the skin of my friends and family) and FYI if I do haunt you, my code word is Dib Dab in honour of Scouse, whose called Keith by the way xxx 

Last weekend in Cyprus with some of the Skin Suit.