D - Day - Last Blog Of 2016

So this will be my last blog of 2016. Without doubt, one of the hardest years to get through since I can last remember.

After losing Jack in October, I thought we had been given our fill of heartache for one reason or another this year, but no. Just a few short weeks later, Andrew, who was waiting for his transplant call, died in the arms of his fiancé Helen. They had planned to marry & bring up their boys together as soon as he had his new lungs. He was literally the funniest cunt I have ever had the pleasure of knowing, every other word would be a swear word & he didn't even have to try to wind up the most pathetic excuse of a human being. I can't tell you how many times he was blocked from a group & suspended from Facebook! We had a lot in common & I am absolutely gutted he didn't get the chance he so very much deserved. Rest in peace Wardy.

You'd think that would be enough wouldn't you? No. We laid to rest a legend on Friday morning of last week. Kirstie Tancock. Literally, no joke she was a legend. I have known her for years as she was treated at the same hospital as me with the same CF team & we often were admitted together with whatever infection we had at the time. It's no lie when I say we weren't best friends, Kirstie loved the spotlight, & I was a little more reserved. We never had a fall out or anything we simply just slipped away from each other as the years passed. Kirstie had had two lung transplants & was diagnosed with chronic rejection just before the Summer. Harefield had tried to help with radiotherapy & other treatments but nothing was working. When I was admitted with my tummy problems, Kirstie was told there was nothing they could do for her & that she should return home & do what she wanted with what remained of the rest of her life. I was trying to deal with my own shit (fucking literally) but that cut deep. She had been basically like a CF sister to me & although we hadn't talked in yonks I just wanted to hug her.

So I reached out & sent her a message, to which she replied immediately. I just wanted her to know that despite everything, I was there for her & she wasn't alone. She was just as kind telling me the same & that she couldn't believe the news about my bowel. We have since kept in touch with messages every few days seeing how each other were getting on & hoping to lift spirits.... I was even going to take Crumble up to see her as she was desperate to have a skunk cuddle. Then came the news I never thought I would have heard, not for a long time. Kirstie, who fought every battle a CFer could face, had quietly passed away with her family around her. The night before she had posted on Facebook that she'd had a nice shower & things were feeling a bit better. Just a few short hours later she was gone. I honestly am still stuck for words. Back in the days of hanging around hospital corridors with each other at 2 in the morning talking about bollocks we promised each other that in years to come we would be two old ladies, rocking in wheelchairs with our knitting whilst nagging at Stu (Kirsties husband) & Stef...

It was our pact & now I am without her. Kirstie was inspirational. She was full on, that was just her character, but she made people stand up & listen. She raised so much money for charity & so much awareness for organ donation, she has left the most amazing legacy & she will never be forgotten. Not by anyone. It sounds a bit weird, but her funeral, or should I say celebration of life was the best service I have been too - don't get me wrong, it was heartbreaking & there were tears a plenty but it was 100% Kirstie. She had planned everything to a T, & it was perfect. I went with two of my CF nurses & despite the circumstances got to see & meet some transplant friends that I haven't seen in ages. The room was filled with hugs, tears & memories & I think she would have absolutely loved it. My heart goes out to Stuart, her husband, Lynn her mum & the rest of Kirstie's family - I can't imagine what they must be going through especially at this time of year where everything is so much harder because after all, it is about family....

Life is too short & the last few months have taught me that more than ever. I am so so happy to have sent her that message, in her own words, "we have been through a lot of shit together & that doesn't just get forgotten".

Sweetdreams Tinkerbell. You will always have a place in my heart.

So moving onto the situation with me...

Today was D Day.

I had my appointment with my surgeon, the man who saved my life in July & gave me Steve. As you know currently, I have Steve the stoma & because he plays a bit of havoc with my hydration levels & kidneys, I am on a solution to keep my head above the water 24/7 via my peg feeding tube & an amazing little bag given to me by my angel nephew Jack. (miss you so much handsome)

It seems to get me by, I have accepted Steve & the St Marks as just another new regime that's slotted into my life. Don't get me wrong, I have my bad days & boy do I fucking hate it, the mess, the pain, the embarrassment but again, just like everything else it is keeping me alive.

If you can remember I was given two options, 1) to remain as I am & continue as I have been the last six months (yes it really has been that long, I mean what the fuck) or 2) go for the operation, carrying risks.

Today, we discussed those risks.... My surgeon although he can't obviously say for sure, doesn't think the operation itself will be a problem, it'll be massive & invasive, they will have to open me up even more & remove the blocked parts of my intestines, then join back up to the other side. This is where it will get risky. The 'join' can become weak during recovery & break down, allowing poo, bacteria & god knows what else into your body, this will kill you. This is also on a person who doesn't carry the complications I do. The risk is much higher for me & if my join were to break down I would have no hope in surviving. I had already been thinking about what I was going to do for the last few weeks depending on what my surgeon said, but going in there today I had my mind 99.9% made up. Especially with the recent loss of Kirstie.

After Dr Bethune told me everything & asked what my opinion was I was 110% sure.

Steve & the St Marks are here to stay. The door has been left open, maybe six months down the line (but I very much doubt it) I will change my mind & want to speak to the surgeons again, but no. Just no way. My life is fucking complicated but I love my life. My eyes fill with tears at just the thought of leaving Stefan behind, my friends, my family - I mean who would be here to cuddle the skunks? Eat biscoffe from the jar with a spoon, yes the whole fucking jar... & literally be the face of any Nightmare Before Christmas / Batman / Joker / skunk & snake related meme on Facebook!

Kirstie didn't want to die, she had so much more left to achieve, Andrew was getting married, Jack was just 5! Just 5 fucking years old. How can I have my life saved 3 times & the just think fuck it, I'll risk it all because cosmetically I'll look better without a stoma.

Yes I get depressed about it, yes I wear maternity jeans now because nothing else is comfortable & yes, I would love to be able to sit on the toilet for half an hour playing on my phone like everyone else around here & having that amazing feeling when you go for a nice poo but tough shit Kim!! This is the hand I have been dealt & I will deal with it like I do everything else. I want to live for as long as I possibly can, I have far too much to loose, every day I wake up is a gift & I don't intend to waste it.....

2016 has been a terrible year, for a lot of people I know too - I am not going to be making stupid new years resolutions that you jack off within a 48 hour period. You know when you say to people, "oh, we must catch up! It's been too long" & it never happens... Well 2017 is going to be full of catch up's, full of caffeine free teas (sorry, just for me) snapchat stories, feet on the sofa & talking for hours on end because life is too fucking short for you to just let it slip you by, you'll all be telling me to fuck off!!

I will leave you with a few photos now of what I have been up to over the last few weeks just to try break the tension a little... Where ever you are, whatever your doing, have a wonderful Christmas. Call in on a friend, ring a family member you have been avoiding, forgive & forget. Make 2017 about what you want & how you can get it. I plan to.  All my love guys xxxxxxx

New Jared Leto ' Joker' Tattoo

Date Night With The Handsome One

Pretty In Pink For Kirstie's Celebration Of Life