Monday 29 August 2016

The Toothless Trails. Trail 2: Ceebeebies world.

Seizing the day.

Let me tell you cannot seize every day. It's too bloody tiring. Some days, you should flop out of bed, face down onto the sofa, wear the same pants you had on yesterday, pick the crust off your Primark joggers and catch up with celebrity big brother. 
You don't have to wake up each morning and announce that 'today you shall learn Spanish', 'walk up Scaffell Pike' (personally I prefer Fan-Y-Big for obvious reasons - Google it.. It's real) or 'flit to Paris for a spot of snail munching'. No! It's too hard. 

But what I would recommend is filling any 'empty space' with something. 
If you have a weekend looming but no other plans then to deworm Fido or take Great Aunt Gravy-Chin out to buy some new marquee pants; why not go glamping? Or go on a forest combing walk? You could take Great Aunt Gravy-Chin with you. 
Have you heard of 'geo caching'? That's something we are starting. It's a treasure hunt and I was surprised to learn they are all over my town. 

Anyway, since I opened the one way door to Cancer-land, people rarely say 'no' to me so I've been doing a lot lately!

My Uni friends and I went to the Peak District with our kids. We can't call it a 'holiday' as the kids were there. It was an adventure. 
We quickly referred to the day trips we took as 'Funishment'. 

Adults: "Come on everyone. Let's head to Monkey-Land for some Funishment."

Kids: "Tait just bit me / I want the car seat with the sick on / Milo's Poohed his pants / I hate Monkeys / I wanted to open my own crisp packet / why are there trees here, I hate trees / why is that monkey touching his Winky? / I'm bored." And on and on and on

Adults: "everybody just shut up and enjoy yourselves OK. Mummy and Daddy have paid £5.30 to get in here, plus parking. You will enjoy yourself!"

FUNISHMENT. FUNISHMENT. La la la la laaaaaaaaaaaaa.

It was a huge 'team' effort. All working together to enjoy a group adventure. And then laughing when things most certainly didn't resemble 'The Walton's.' Like when Tait crapped in the communal bath. 
It was all going so well. The two youngest boys in the bath together. No one had bitten anyone, the bath resembled an Ibiza foam party, the tunes were banging (the babies in the bath go splish splash splosh etc) and the boats were being 'shared nicely.' 
Then suddenly, just as the older kids were about to get in the recycled water, a shriek of 'oh my god what's that in the water?' Booms across the bathroom. My blood runs cold as I immediately think 'SHARK!!!!!', then I remember we are in a farmhouse in Bradnop and Jaws was filmed in America.....'fucking hell it must be a floater' and sure enough a fleet of brown submarines had been deployed towards various coordinates across the bath. Cue my friend Cathy and I, frantically scooping our children out of the bath and wiping theirs butts with white towels to established who was responsible. (Good Night John Boy) 

We spent a day at Alton Towers. One of the items on the bucket and spade list . Toothless stayed at the house for this one. I bet she was pleased!!
It was very different to the AT trips of yesteryear. Gone were the days of coach trips that left Bristol at 6am to deliver a large group of pubescent teens reeking of BO to spend the whole day drinking coke, not eating anything that isn't 90% sugar and re-riding Nemisis or Corkscrew until we barfed everywhere. No no no! 
We now walked passed Rita Queen of Speed with our heads hanging low, to enter the world of CBeebies. 
It's like someone chucked the bedtime hour, some neon paints and a can of red bull into a cocktail shaker, gave it a vigorous shake and then opened it in your face. 
It was insane!!!!

The 'in the night garden' boating adventure was Taits favourite. True to form, all the animation was powered by the sound of farts. Upsy Daisy's mechanical skirt had got slightly stuck up and she was basically showing her Foof to all and sundry whilst shouting 'whoopsie daisy do'....It was just like Geordie Shore.
The Pontipines were hardly there at all and the Wattingers had completely fucked off. We were waved off the ride by Iggle Piggle and that stiff red blanket which you just know has been used as a jiz rag. 

The 'pirate ship' was Noah's favourite. Scouse almost lost his shit when I told him it was my turn to go on something with Noah as Tait was too small and had to stay behind. Luckily my dear friend Lou stepped in to look after Tait before Scouse had a melt down.
I came into my own here as if you've ever been to Bristol before, you'll know that we sound an awful lot like pirates. I was oooooing and aaarrrrring up a storm. 
Basically you get in these boats that have water guns on and you can shoot the public and they you. We launched the boat and were 'jolly rogering' our asses off until we rounded the corner....Josh, who is also 3, was promptly shot in the face by some over zealous dad and began to scream his head off, an extremely violent 8 year old used my bald head as a target and completely destroyed my drawn on eyebrows. Scouse was shooting everyone he could see (including the little two year old girl in the pink coat) while Noah was shouting "help me daddy" to which Scouse replied "Sorry I can't son, I've got pirate jobs".
Needless to say it was carnage. 
We then spent 30 minutes queuing to go in one of those stand up hair dryer things. We were reunited with Tait who wanted to join in the hairdryer fun and promptly shat his nappy on a colossal scale. We only realised he'd 'Conjured a Patronus' when the hairdryer began to honk of onions as his nappy was being cooked by the dryer and the fumes blown around us and subsequently the unsuspecting queue of soggy pirates. 
Ahhh good memories. Tait really sized his day there. 

The holiday was fantastic. Scouse and I worked well as a team. I think I can only recall one passive aggressive parent moment when Tait had chucked his curry everywhere and Scouse asked me to clean him up as I had not sat down yet to eat my tea. I replied that really as he was already half way through his meal, he could maybe do it. He promptly replied "there's no 'I' in team Heidi" and gave me his best shit-eating grin. As I turned back to the kitchen to get wipes I'm sure he didn't hear me mutter under my breath 'no but there's a 'U' in Cunt" 

I love spending time with my Uni friends and their families. I don't get to see them that much as they live far away but they've been there for me so much throughout all this crap, and will continue to be there for me even when they are going through their own crap. 
I sometimes forget that my friend Lou nearly died from Menigistis while we were at Uni. She has also had skin Cancer. She is my age. I don't forget because I'm so wrapped up in myself. I forget because she is one of the toughest people I know and she chalks these situations up to experience. She doesn't let them dominate. She doesn't wear the experience on her face. Yes, she wears a lot of sun cream, but she's really ginger and practically see through, so you'd never suspect Cancer was the reason.

And my friend Cathy. Well, she was the one who shaved her head when my hair fell out. She is extremely tough and strong in other ways, ways she wouldn't thank me for typing but I know you trust me when I tell you, she is nails.

I take my strength from my friends and family and the support of people I've never met. People like you.

When faced with this terrible illness that has taken so much from me and may take more in the future, all the bullshit around the edges falls away. I don't care much about my car, about a promotion or about nice handbags; I care about experiences. I care about making the best of everything with the people that mean the most to me.

Seizing the day is about making it count. Not because I think I'm no no! It's because I'm living. 

Thursday 4 August 2016


So I'm sat having Non-chemo chemo (keeps you alive but doesn't make your hair fall out) and I really need a wee. But I don't want to go because then I've got to drag 'Old Man Wheely Legs' with me. It's not that I don't like him or I'm ashamed of him...its just that we look like we are kind of dancing down the corridor together. Also the urge to hunch over whilst dragging his skinny ass, is just too tempting. I did it last time at Oncology and not one person laughed, except the nurse. What's with this crowd? 
Whenever I have succumbed to the 30 litres of 'post toddler night-riot rocket fuel (coffee)' I've chucked down my throat, I have had to unplug 'Old Man Wheely Legs' and we do some kind of crazy drug-machine-human tango to the bog. Dragging my bag of fluids, to empty my fluids to be replaced with more fluids, to the fluid despenser, fluidly.
It's one of the only times I feel I actually look like an ill person. 
So as I sit here crossing and uncrossing my legs, I've concluded I shall just piss myself. Because that's less uncomfortable.

 Me and 'Old Man Wheely Legs'
Here we are demonstrating the Tango

So, what's happening with me? 
The boob got cut up and then thrown into the 'body-part bonfire' underneath the hospital. Or plonked into a jar of vinegar. Whatever it is they do with chopped off bits.
When it was dissected, some Cancer was found. 
This may not sound like a surprise to the muggles (I had cancer of the bap after all) but the hope is that chemo gets rid of everything in the boob which puts you in the 'complete pathological response' bracket. I didn't  quite make that but it's almost clear. This is medium news. 

The NHS deem me as Non-Curable due to a belief that the Cancer has spread to my lungs. 
This is called Secondary Breast Cancer - it has left its primary residence and travelled to a second home. 
Once this has happened the 'door for cure' slams firmly shut. 
There is no going back. 
I am now on palliative care. Palliative is a term that I would associate with people very close to the drop off zone. Obviously this is not always the case because have you seen me lately??? 
5 of my chins have gone, leaving me with just 3. I've jumped out of a plane, my ass can again be contained within a 4-man tent as opposed to a marquee, my hair is growing back at about 2 millimetres a month and my scalp is the texture of a Kiwi fruit. I've been camping 3 weeks post mastectomy, body slammed my 2 sons regularly AND I haven't shat myself for at least 4 weeks. I FEEL GREAT! 
Numbers and labels eh? Puh!!!!

Let me tell you, I have asked the million dollar long have I got? What is my number
And let me be clear on one really knows. Of course I did push for this to be answered but maybe not for the obvious reasons. 
If you chuck my current info post mastectomy into a date generator then it spits out 4-5 years. I've already had Inflammatory Breast Cancer for 1.5 years so my 'C' in GCSE maths leads me to calculate (with a calculator) that computer says NOOOO hope for you living more than 3.5 years. 
Now I'm not being naive nor am I in denial when I tell you that that info is Grade A, 24 carat bullshit. And honestly, a few of my medical team would agree. 

Although that is a number. It is just a number. There is so little research on IBC that really nobody knows. There are people that will be given 10 years and then be gone in 10 days, there are people that will be given 1 year and out live us all. And there is of course no immunity to other deaths when you have Cancer....I could still be eaten by a shark or choke on a chicken foot at Nandos. No one really knows. 

A prognosis does make you get your admin together....we (Scouse and I) now have wills. We also have medical and financial power of attorney over each other....every time Scouse and I argue over the remote he says 'don't wind me up...I have legal powers to switch you off remember' and then I remind him that in fact I have the same power over him. That shuts him up.

One thing 'the number' generated was an impromptu midnight convo two days ago...

Me: Scouse?

Him: Yeah?

Me: Oh good. You're awake. Listen. We need to talk about something that's really bothering me since they gave me my number. I've been lying here stressing about it. I've played out in my mind.... the horrors of the end. And beyond all the really obvious emotional stuff that we talk about, there's another thing that's really stressing me out. I need to ask you do to something for me. It's so important that you must promise me you'll do it. 
When I die...

Him: Yeah?

Me: I'm worried I'll not really be dead and they'll bury me alive and I'll wake up in a coffin. Can you please promise me you'll double check that I'm dead?

Him: Of course Hun. I'll come back and stake you like a vampire. Night Night.

What a guy. ❤️

The prognosis gives me a number.
I imagine it like this....
That number is lying by the side of the road. I see myself in an open top car with my 3 boys around me travelling down that road, Ally is smiling down from the sky, and we go zooming passed that number. 
I stretch my fist firmly towards that number and confidently erect my middle finger.
The car keeps on driving, right off into the distance and disappears. 

I'm not kidding myself, but really, fearing something and fixating on it will not change the outcome. 
Exist in fear and sadness or live in strength and happiness. 
Either way, you end up the same. 
But you control your car.