Thursday, 4 August 2016

Numbers

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 question...how long have I got? What is my number
And let me be clear on this....no 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. 


18 comments:

  1. I once (gently!!!) tipped my Old Man Wheely Legs bag on one wheel, precisely as if I were dipping it for a tango. My doc laughed his ass off (insofar as that's possible for an old Minnesotan, so what I really mean is that he smiled dryly and shook his head while his eyes twinkled at me), as did the chemo nurses, but no one else even dared to make eye contact with me! I always lived in fear I was going to drop one of the bags of chemo into the toilet somehow, but if I managed not to, in my infinite clumsiness, I have faith that it's actually impossible to do :)
    Hats off to you! Keep being amazing and giving the middle finger!

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  2. You are an inspiration Heidi xx

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  3. I couldn't get on with my old man wheels legs at all. Kept catching it in doors, and tripping over it - pretty much says it all really x

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  4. I was given 14-16 months 19 years ago. Not from breast cancer, from 'deadly' brain cancer. Yet am still here. Ain't nuthin but a number Heidi. I think all of us, cancer or no cancer just need to make the most of our time here EVERY DAY. And hope we don't get hit by a bus tomorrow. Love your blog lady. Huge bald kisses to you and your family. Xx

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  5. From the woman who was never meant to walk again Heidi I would offer you the perspective that the number is based on consultants experience of what might happen but it might not be your experience., it is their perspective. I take each day and live it to the full. Yes you have the opportunity to deal with some practical issues on the what if scenario but I wanted to slide in at the last minute and say: life, whoA what an experience. Keep thinking positive my personal trainer says your mind can be the difference. Go you rebel we are all behind you.

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  6. Heidi you are wonderful. I'd back you in a contest against the grim reaper any old day. Keep on keeping on. John (aka Cathy's Dad). Xx

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  7. Thank you for this Heidi, you don't have to share your strength and humour with us but you do and for me, a fellow BC survivor, your words are a wonderful tonic and they boost my mood no end. I've gotten out of bed with a proper spring in my step thanks to you. Keep on going lady and share with us for as long as you wish, you may think the support is all coming one way (yours), but its not, your words have me punching the air for myself and all of us. Cheers! JM xx (PS: did you get your pension early? I retired early and got mine without fuss but I'm allowed because I'm 55. I hope you don't have any fuss, give 'em hell if they try to delay.)

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  8. Heidi, No one really knows their number. Not you, not me, not anyone. We've been given the gift of life, and wonderful families and friends. Our only job: to love them. That's all we've got, for ever how long we are blessed to be together. Go out and have some fun. Those boys are at the right age to be a blast!

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  9. You are amazing. So brave and witty and honest. An incredible mother. I'm so sorry you are going through this. I don't know you but send you so so much love and support and hope. X

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  10. Your sense of humour is amazing despite all the doggy doo lala your going through u are a true inspiration and i applaud you. I have total respect to you for sharing your story (journey) as you are doing it with gusto and such a positive manner. Noone unless they go through a testing time can begin to imagine the emotion someone goes through but i see in you a beautiful lady who is taking everything in their stride but with a realistic head on their shoulders. Love respect to you and your lovely family. Xxxx

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  11. This comment has been removed by the author.

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  12. Your sense of humour is amazing despite all the doggy doo lala your going through u are a true inspiration and i applaud you. I have total respect to you for sharing your story (journey) as you are doing it with gusto and such a positive manner. Noone unless they go through a testing time can begin to imagine the emotion someone goes through but i see in you a beautiful lady who is taking everything in their stride but with a realistic head on their shoulders. Love respect to you and your lovely family. Xxxx

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  13. Your sense of humour is amazing despite all the doggy doo lala your going through u are a true inspiration and i applaud you. I have total respect to you for sharing your story (journey) as you are doing it with gusto and such a positive manner. Noone unless they go through a testing time can begin to imagine the emotion someone goes through but i see in you a beautiful lady who is taking everything in their stride but with a realistic head on their shoulders. Love respect to you and your lovely family. Xxxx

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  15. Can I call you a total fruit cake and nutcase? Suppose I've gone and dunnit. Hate it when someone says that they might get run over by a bus tomorrow. Doesn't help at all. Live alive. Need to try to put it in the box at the back of the mind. We must have the same audience at non chemo chemo time lol.Take care xxx
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