Tuesday, 19 April 2016

Hyper Aware

People often ask me how do I cope so well with what is happening?
Initially I consider if they are talking about dealing with a rare and aggressive form of cancer with a very dismal prognosis, or, are they asking me about the loss of my daughter Ally? 
What I have established is that 9/10 times they are asking me about Voldertit. 
This is because people don't want to ask about Ally for fear of upsetting me. I totally understand. No one wants to be the reason that tears arrive. However, I feel I should point out that I am thinking of her every second. By mentioning her name to me you are not reminding me that my daughter died, you are reminding me that she lived. 
You are telling me you are also thinking of her and that is important. You see, Ally exists with me, always. 
I want to talk about her, I want you to ask about her, I want her name spoken as often as possible because she is a huge part of who we are. 

Every time I look at the boys I wonder how much Ally would have looked like them, what her personality would have been like and what her first words would have been. Would she have recited the word 'Bellend' as proud as punch after hearing it from her daddy just as her oldest brother did? Would she have had my sense of humour and our rogue ginger gene? 
I'll never know. 

So we go back to coping? How do I 'cope'? 
Well someone told me that everyone copes because what is not coping?
I guess it's dying? Some could argue that I'm already doing that... I'm stage 4 with no cure. I'll always have cancer. But then we are all dying right? We all go at some point but maybe we live our lives based on assumption of 'making old bones' and I've been reminded that death knows no rules. It rolls however it wants to. It smokes crack one day and goes to church the next. It does whatever it wants, to who ever it wants, whenever it wants. 
Death is very real to me so I put it to you...

Am I lucky?

My mortality is very tangible and will continue to be this way until I'm switched off or I become the epitome of irony 'Cancer-mum who risked life to save daughter who passed away after 8 days beats cancer only to be crushed by unsecured letter 'V' hanging off of 'VUE Cinema' Cribbs Causeway.' 

........seriously this has occurred to me!

 'Am I Lucky?'

I live with the knowledge that I may die a lot sooner then I planned.  Therefore I see the world in a slightly different way. I'm hyper aware that maybe when I do something now it could be for the last time. I don't mean like 'make a sandwich' or 'put the bins out' I mean if I go to the beach it could be the last time. When I take off my shoes and feel cold sand beneath my feet then dust that sand off to put my shoe back on, that could have been the last time I will feel sand. 

Now again, that can be said for any of us. What you are doing right now could be the last time you do it (please don't die reading my blog....that would mean I literally bored you to death) because don't forget that massive proverbial 'bus' driving around the world wiping us out one commuter at a time. 
That bus!!!!!! Remember everyone it could hit you at anytime!!!!!!
That FUCKING bus is getting more air time then this weird celebrity threesome story doing the rounds.... Can I say who it is? I doubt they'd gag me. Not good for PR......'tragic cancer mum who writes shit blog full of grammatical errors names celebrities involved in (cock)gagging order, is then arrested and forced into a line up with Phil Mitchell then subsequently thrown in gaol whereby her cancerous body shrivels into a skeleton on the floor, when found her twisted corpse had an outstretched finger pointing towards some really dodgy plastic coloured glasses and a Dolce and Gabbana carrier bag.'

No I won't say whose involved because really, does anyone actually give a shit?

So, I digress. Everything I do, I'm wondering if it could be the last time. 
It's exhausting but it's also kind of beautiful. 
Taking things in on that kind of level is one hell of an experience. I'm planning all these grand trips with the kids and they are so important to me but it's the small things (cliche ding ding ding) that really count. 
When I put Tait to bed and he has his milk and is calm (normally he's running around like he's being chased by the dude from Texas chainsaw massacre) I look at him. I mean I really look at him. His fingernails, his eyelashes, his hair and I take it all in. I absorb it and store it in my memory. 
When Ally was in NICU I didn't take it all in. 
I took in some things but I didn't really get everything locked down that I should have. 
I can remember when she was poorly that she looked at me and flicked her eyes from right to centre. That was the only time I can recall eye contact with her and it's crystal clear in my mind but why didn't I take in everything else? It's because I didn't observe things fully until I realised that actually things aren't going to necessarily be ok. 

I have been handed a pair of glasses that make me view the world in a different way to this time last year. I was a normal 32 year old with two young children driving her round the bend. Things have changed since then. (The bend driving is still the same)

None of us knows when we will die but we all assume we'll be grey, crinkly and rocking in a chair whilst looking at photos of our great grand children. 
Me? In theory I'll be lucky if I make 40. 
But I still visualise myself as that woman rocking in a chair, so thankful that I defied the odds and  so grateful that I lived my life as a hyper aware. Taking in every detail that matters. 

'Cancer-mums last words on death bed: I will remember it all, always.'


  1. I've sat here thinking about what to write and I don't really have any words. I guess this is why a lot of people don't say anything. I'm in awe, humbled, sad & terrified for you all at the same time. You are all in my thoughts often (including Ally!!) xxxx

  2. well written Heidi. Thinking of you and Ally.

  3. We all begin reading with a clear view and all end in a glazed watery eye view there is always a part in your blog that clutches the throat and makes it hard to swallow then tears flow and a rush of love for you and your family floods in when I think of how brave and damn honest you are x keep fighting and enjoy every blessing and breath of your children x

    1. That is exactly what I wanted to say but you said it very well so I'm not going to add anything. Except Heidi I think of you and your family a lot. You are one freaking courageous lady (even though you say you don't really have a choice but to be brave,you are).

  4. I find it astonishing how tragedy and humour are woven together so seamlessly when you write, reading your blog (grammatical errors or not) is like reading a script for a show that would run for 8 seasons on Netflix and would probably win loads of accolades at those award ceremonies. Except it's not a TV show, it's your life, and it's painful and heartbreaking and crazy and inspiring and poignant and yes, humourous all at once. Keep talking to us about Ally, we'll listen and respond because we care xxx

  5. I have read your blog since day 1 and I am so inspired by you. I know ally is proud to have such a strong mom. One thing I wanted to mention , and this may not be the right place, is if you've considered any of the stage 4 diets. There are many of them. Drinking tons of carrot juice, eating 8 cloves of garlic, eating sour sop fruit etc. my mom beat cancer recently and although she did chemo she has changed her diet to try some of the stage 4 diets out there. If you want to chat please let me know. Or if you just google stage 4 diet it might help you feel better, give you more energy and help your body naturally fight the cancer cells as well. Praying for you and your family always.

  6. Sweetheart you will always be in my thoughts, the boys and Ally. I'm so utterly proud of you and your strength. I intend to live every day in the same way. Being grateful for every moment and thank you for your vision. Having clarity of what's important and taking nothing for granted. You inspire me huni. Lots of
    Love xxxx