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

From The Best Making Memories Experience, To A Heartbreaking Announcement ...

We are now well into the middle of my favourite times of the year, I am clearly not built for Summer months as something always goes wrong medically & as I am a huge kid at heart, Halloween & Christmas are what I look forward to the most.

I have to start this blog out with some devastating news I never wanted to have to write about.... After a two year battle & three weeks in hospital fighting pneumonia, our beautiful nephew Jack passed away, aged just five. On the 27th October he took his last breathe. It was peaceful & painless with his family around him, we have his funeral coming up a week after next which will be themed with superheroes just like he was. Life will never be the same without his infectious laugh & beautiful brown eyes. 

 Things have been hard to cope with both emotionally & physically the last month, losing Jack was something we all expected, but never so soon & it still doesn't even feel real. I had a lot of things planned from Halloween onwards & it's been painful to want to enjoy them after life has been so unfair & a little child lost his life. However, I know Jack would have wanted me to be the big kid I am & have some fun, he even gave me (with a little help from his mummy) his old feed bag to help me become more mobile with my St Mark's Solution & it has been an absolute godsend so thank you so much angel....

Halloween has got to be a close favourite of mine of the year, if not the favourite. It's very hard to choose between that & Christmas...

This year I have totally wanted to make the most of it so my sister & I, with Stefan in tow, went to Dartmoor Zoo for Boo At The Zoo on the Saturday night before Halloween. I dressed up as 'prisoner' Harley Quinn & my sister was of course, the Joker. It was a very funny night being chased around a pitch black zoo by zombie staff with nothing but a torch - I don't think Stef enjoyed it quite as much as us, but he is a bit of a grown up compared to me! 

 The scary fun didn't stop there as on actual Halloween which fell on the Monday, my sister took me to Bygones & Model Village with a pub lunch in between. That was cool as we hadn't been to either of those places for years, and of course, I did a little dressing up for the occasion. The looks I got were quite funny, but I did get lots of smiles, and "nice to see someone's gone to the effort!" LOL!!

 I had a couple days to recoup & a hospital trip before I finally got to go on my birthday trip to ZSL London Zoo to sleep at Lion Lodge. Lauren & Stefan got it for my birthday back in July, but because of all the trouble going on with my tummy I haven't been able to go on it. Finally the day had come where we set off at 4.30am on Thursday & arrived at the park just before they opened at 10am.

We spent the day going through the zoo & were extremely lucky to see all the new babies, two tiger cubs, two gorillas, even a baby sloth! I loved the bat enclosure & the orb spider display & fell in love with the tigers & pygmy hippos, especially Thug. But the best was saved to last... 

 At 4pm we checked into our lodges & Lauren enjoyed a glass of prosecco, whilst I had my apple juice. There we were sat with the lions with just a pane of glass between us. Bannioo, the male, was curled up in his cave but the ladies, Indi, Heidi & Rubi were curled up on the heat rock right next to where we were staying - it was absolutely magical. The lodges were stunning, so cosy & warm, it was like a dream. We went for our first torchlight tour at 6pm around the zoo with our hosts Joy & Kerry & then had a lovely dinner in the garden room with the other guests. Straight after, we had another tour, and got to feed the pygmy hippos, the aardvarks & the porcupines. It was awesome to see them out and about at night. 

 We finally got back to the lodges round 10 to get our heads down but were woken by the lions quite frequently (which we didn't mind at all) Lauren & I took it in turns waking each other up every time we heard them, then my alarm went off for my morning med regime & you could hear Bannioo being extremely vocal so Lauren bolted up right, took a hot chocolate outside on the terrace & listened to them! It was the perfect wake up call, we couldn't stop smiling. We headed off to breakfast, which was lovely, before the keepers morning tour, their busiest time before the zoo opens. We got too see some animals eating their own breakfast & the places where they prepared it. As it came to an end we said our goodbyes & went to set off for Whipsnade Zoo...

I had an accident as we left, my bag literally exploded all over me, so my sister wheeled me too the nearest disabled toilet & had to run to the gate where our luggage was being stored to get me some fresh clothes. That did put a small dampener on the day, I felt utterly gross & upset that it had happened but it's something I am putting up with on a regular basis at the moment. Anyway, after a little cry & a clean up, we were on our way & got to Whipsnade just before midday. Unfortunately the weather was less to be desired as it started to piss it down, but that didn't put us off. I fell in love with the hippo's, Lola particularly as she moved & looked up at me as I called her name, we even got to see a gorgeous little baby elephant running around her mum & auntie. It was epic & an experience I will certainly never forget.

I am of course absolutely exhausted now. I did nothing today but stay in my PJ's, clean my animals & watch a movie. I was meant to have an early night but as you can see I am up writing this to you guys as I think I'm still buzzing after London & looking forward to the morning as Stef & I are travelling to the Birmingham NEC for the National Pet Show 2016! Another 5am start but it'll be well worth it!!

It'll be the last trip to enjoy now for a good while I would imagine, nothing has changed with my situation whatsoever. I am still irrigating, but nothing is happening. I am still on St Marks Fluid, (hence why Jack's bag is a god send) The next plan is to have a CT scan to see if the blockage as moved or got smaller or ???? Then I have no idea... No fucking clue.  There has been talks about getting London involved with a second opinion, and talks of IF surgery is the ONLY option, it won't be done until AFTER Christmas.

I just really wish I had a plan of what was happening rather than guessing every week. The more accidents I have with Steve the more upset I get. I would love a decent soak in the bath without a bag strapped to me & knowing my skin isn't getting burnt underneath it. I would love a pint of water, a bit of fruit & some green beans! I never thought I would say that but I am tired of eating shit! I feel unhealthy & I feel very fugly! Yet I am here, & others aren't, & other's are struggling more than myself. Two in particular who I am thinking of on a daily basis. Life is so very unfair, I know it's cliché but you just have to make the most of what you have & do the things you want. I think this year in general has shown many people that & I for one can't wait to see the back of it. 

 I will keep you posted with more news, better get some shut eye now else I will fall asleep in front of Supervet Noel!! I hope you like the pics . All the very best & much love xxxxxxx

Victor Meldrew...... Moan Moan Moan!

I honestly don't know where to start since I last wrote to you all so bare with me, I will try to keep it as short as possible so you don't get bored of my dribble!

I guess unless you are friends with me on Facebook or via other social media, you would have thought that Steve the stoma would have been tucked nicely back inside me now & things were on the up. I only wish I could be writing that update to you now...

Crumble Cuddles

 Unfortunately during the admittance of my scheduled reversal, they found I had a very bad blockage in my small & large intestine. Over the four days they tried several methods of unblocking, none of these worked & it was looking likely that Steve was here to stay for a while longer.  I did go down to theatre as planned, but only to have a camera look inside both my stoma & up my arse intto my colon!

As nothing went to plan, I was discharged late on the Friday with hopes that my CF team would discuss with other medical bigwigs & be in touch... 
After a few days, I went for more bloods expecting nothing but a text to possibly alter my immuneo suppressant dose. I was enjoying a nice day out with my sister, a spot of lunch & then a cinema trip, when I was told to call my CF nurse straight away. I had to sneak out of the movie & was told to pack and go up to my ward as soon as possible as my CKD (chronic kidney disease) was playing up yet again. Once I was admitted, my consultant then told me about the urgency of getting my bowl unblocked. I was put on more fluids & over the course of a few days had several enemas & laxative drugs 'attempted' to be put down my stoma. I also had a procedure to show the radiologist where the blockage was. They were only able to get four centimetres down my stoma & two foot up my butt so the blockage itself is a massive 6 to 10 foot long!!!!

A Gift In Hospital From My Hubby

 After trying an oil based enema on the Thursday evening, a few hours later I was in unbearable pain - my nurses called Stefan back up at about 11pm & I had morphine dose after morphine dose as they held my hands & tried to calm me down. It was agony, Stef left around 1am but I didn't get a wink of sleep. Nothing came of the enema, so I was allowed to go home again Friday late afternoon with the team having to have further discussions about what to do....

Which brings us to today. I am currently on three litres of St Marks Solution every day which isn't giving me much time off the peg feed machine at all. Even with all this fluid going in and drinking as normal, my CKD is still slowly raising each time I have my bloods done. I am seeing a lady next Tuesday, she is going to come to my house to save hospital admittance & she will try colonic irrigation. I am, if I am honest, really quite worried about this. One) because I really don't want anything else shoved up my arse, b) I will have no pain killers and I am panicking about the pain, especially since last week & option d) because I really am fucked off to the back teeth of all this shit.

People keep saying, "Wow Kim! People pay a lot of money for that procedure!" Yes, they may do, but literally, fuck off - I'd like to see the TOWIE lot go through 3 months of this bollocks, I can think of much better ways to spend a ridiculous amount of money... So there we go. Until Tuesday, I am just plodding on, we will see if this ass wash will work (after everything beforehand has failed) If it does, amazing, I'll eat my own toenails, but if not, I think the only option will be extremely invasive surgery which I really can't afford to have...

Especially at the moment. Stef, bless his heart has been struggling with a really bad cold that seems to have gone on to his chest. We have done our absolute best to keep me from catching it, I have avoided him at all costs, barely seen him, either being out the house or in separate rooms. However, my sister & her partner have it too, as does my brother & his partner, and Jack and Jim.... So the fucking obvious has happened & I have caught the lurgy and am kicking myself for feeling so rough and wishing at the same time my lungs aren't affected badly...  Why? Literally throw something else my way! Please!

Wow what a big fucking moan that was.... I am sorry, I absolutely hate feeling this way, seems all I do at the moment is shit on about my poor health when I am usually so so positive.

I guess I just like things to go my way, and since July, well, they really haven't. It's been one thing after the other & I am not coping well at all. Friends around me are really poorly, I lost a very good friend only just last month & our beautiful nephew Jack is back in hospital fighting pneumonia. I want to kick myself when I catch myself moaning about what's going on with me when other people are struggling so much themselves. Life is extremely unfair & 2016 has not been a year I want to remember if I am honest!! 

Stefan & I are going through the hardest time we have ever fought together. Don't ask me why, after a double lung transplant and then actual heart & kidney failure, some people would find this a walk in the park, but it's the not knowing of what will happen, the fact that we are three almost four months on! The fact that all my medical team have spoken to other hospitals up and down the country & yet no one has come across this before, they are going in completely blind and just trying to do their best for me, but nothing seems to be working and I am getting all the more fed up. 

Somebody even said to me that it must be embarrassing for me. Well, in all honesty, I've not thought once about the 'embarrassment' of having a stoma since I got Steve. I mean so may people have to go through having one with unexpected blockages or history of Crohns disease etc. I did sit for a minute and think wow, is it really bad? Should I be hiding away? 
I haven't worn make up now for the best part of three months, well since I had the operation. My hair is always clipped up & I am mainly wearing pj's or comfy lounge clothes. I don't feel pretty or as glamourous as I once did, I can't put my finger on it as to why but it's really having an impact on me. Hopefully in time this will improve? Who knows....

I have some piccies for you of the animals as always, hopefully you haven't closed down the window yet and scrolled down just in case I added some! I have lots of royal python hatchlings I am weaning on & will be available for new homes if anyone would like one! I have given my froggy a new home & the dogs & skunks are looking after me most days.... 

Raines New Live Plant Enclosure

Hatchlings I Have Had This Year

Two New Gorgeous Snakes For Future Plans!

 We are fast approaching Halloween and I can't wait as I am dressing up and going to Dartmoor Zoo with my sister, I just hope this is going to be a possibility what with everything going on.... Until then, I will take each day as it comes, I have decorated the house (much to Stef's disgust) & am stuffing my face with Halloween themed goodies when I can get my hands on them!!!

I just want to say a big thank you to people that have sent me cards , gifts & beautiful supportive messages, it really does mean a lot & I hope that I can get back on track & start being more positive really soon! Thank you once again and so sorry for the rant, I need my smile back....

We Celebrated Bo's Second Birthday!!!

Cookie

Much love xxx

Just Keep Swimming

It was seven weeks to the day yesterday from my operation that introduced Steve into my life. I think I can without hesitation say to you that it's been one of the longest & hardest recoveries I have ever been through.

Just a few days after my last blog, I scared the shit out of Stefan as I was changing my stoma bag & passed out unresponsive. Lucky he was able to catch me, but my lips turned blue & he couldn't wake me. I don't remember anything & when I came too, I just thought it was my sugars... Two days later I was feeling like death & was admitted into Culm again with my kidney levels rocketing & severe dehydration.

Unfortunately, my little life saver Steve was now causing problems for me. Everything that passed through my lips would immediately go straight into my stoma bag so I wasn't getting any nutrients, hydration & my kidneys were really suffering. I lost 13kg in less than a week.

After a few days of constant IV fluids, I slowly started to pick up. I had also been started on St Marks Solution through my mini (PEG - feeding tube) this is an electrolyte solution to keep everything balanced. It's a pain in the fucking ass as I am meant to have 1000ml slowly going in through the day via my feed machine, then 500mls overnight & limit my normal 'drink' to 500ml a day, preferably milk as it's more absorbent. Things weren't going so straight forward until they put me on some tablets which has slowed by gut down & now the 'stool' in the bag is less like water & more like porridge so it shows I am absorbing more & feeling a bit better with it. Sorry for the graphic detail! Although it hasn't bettered my bloods, it's kept them stable & I am to keep up this routine until my reversal....

 Which just happens to be a little over a week away. I am to be admitted on Tuesday 20th to Culm East, have bowl preparation for the following two days (I have no idea what this entails as yet) & then have my stoma operation scheduled for the Friday 23rd!

This Is Steve!

 I won't lie, I am absolutely petrified. It has taken weeks for me to feel the way I do today & that has only been in the matter of the last few days. I am walking around, feeling stronger, tending to my animals & enjoying my food again to know that next week, it will all be taken away from me & I will have to start all over again. Up until now, I have had several breakdowns, thinking that things will never get better & telling myself I can't go through anymore. I can't do it, I see no light at the end of the tunnel & I don't want to go through anymore. My mind set may very well change again as I won't know till I am going through the process, but over the last few days I have felt more positive & been telling myself that I need to get in there, get this operation done & as soon as I wake on ITU & am coherent, get those physios to get my ass out of bed & walk....

I want to be back onto Culm, shitting through my asshole like the best of them, eating their revolting mush they call food so I can show my team I will be back home before my hospital room starts to feel lived in. I WILL NOT go through what I have done the last 6 weeks, I realistically cannot, it will break me. So I have to do this for myself. 

 I wrote in my last blog how hard I was finding things, don't get me wrong, I still have my bad days & I haven't battled my demons as yet, I think that is still a long way off until this second part is over with as I feel I am in living in limbo for the moment. I can't quite get on with life as I want too. But, the good thing now I have realised, is that I do have a future & I want that future more than anything so I have no option but to fight, to push for myself, for my husband, for my family & friends. It'll be hard & I may look back on these words & think what a bunch of bollocks Kim, you complete cockwomble you are as weak as you thought, but for now, here's hoping I find my balls & use them!

So enough of the nitty gritty, medical, depressing crap - it's been hard to get out the house what with being tied down on the St Marks shit, but I have had the odd few hours out every now & then. The dam thing isn't portable as such but I can take it in the car with me & strap it on if I go for a tuppy or lunch somewhere which is just what I have been doing to try & give me some sanity over the last week or so. 

 I have spent a lot of time with my sister, who has been a gem, trying to keep me from going insane, we went to see Suicide Squad in the cinema & she treated me to lunch at The Winking Prawn on another day so that was really nice. I have been able to get up to see the girls at the shop for an hour here & there when able & pop in & see my beautiful goddaughter & eat her play dough sandwich she made me. All these little things are what's helped me literally over the last week or so. Not forgetting my doting husband who has been making sure I eat well in the evenings & get some fresh air with the dogs up at the moors. The strain & stress of everything has really taken us through the mill this time, much harder than anything I can remember, I hope it has made us stronger, time will tell but I can't thank him enough for putting up with such a miserable, moody twat recently.

 One thing you may have noticed in the pics is that I have had a hair change! Literally only on Friday evening, my beautiful, very talented sister in law pampered me & made my bright purple dry locks into a gorgeous, shiny, dark purple mane. I am so happy with it, I think it has given me an extra little boost with my confidence over the weekend & with feeling brighter in myself. You feel nothing but pig shit when you are sat in PJ's at home all day, strapped to a dead weight, watching countless amounts of Dexter & smelling of a four day old pasty. With massive thanks to my Keets, I feel a bit pretty :)

Sunday 11th September 2016

Just before I go, I have had a few people asking for the address of the hospital I'll be in next week. The address is Royal Devon & Exeter Hospital , WONFORD. Barrack Road, Exeter EX2 5DW &

I'll either be on CULM EAST WARD or ITU.

I have also just signed up to Instagram & snapchat!! So if you'd like to follow me it's....

invincibleinked for insta

& kkneil83 for vids to make me laugh on snapchat!

Thank you for taking the time as always to read all my bullshit. It does truly mean a lot to me. Have a great week guys xxxx

Three Times A Charm....

So I have been home almost a week now, slowly recovering after one of the most horrendous experiences I have ever gone through.

The day after my birthday I started suffering with stomach pains & complete loss of energy, I was still eating & going to the toilet so didn't think much of it until it came back with avengence on Thursday 21st July. I was taken into hospital & had lots of tests preformed & the conclusion was I had a bowel obstruction high up in my small intestine. The surgeons did not want to operate at all as it would be extremely risky & invasive so I was started on klean prep & hoped for the best within time it would clear....

Three days past, my stomach & chest were now ballooning from my body, I was in absolute agony, had a catheter put in & could barely breathe from the pain. It was Sunday morning & the surgeons came in to tell me they had done all they could & thought my only option was to operate. They explained what they would do but all I heard was empty words, I just held Stefan's hand & cried. Within minutes nurses were taping up my piercing's & removing my nail polish. I was wheeled to a curtained ward & moved beds, I had about six people round me at the time strapping on various wires & masks etc, all the while I was in a daze just staring at my husband in his bike gear looking helpless.

I then had to say goodbye, for the third time in 4 years I was saying goodbye, not knowing if I would wake up again or ever see my husbands face. I honestly don't know if I could face that again. They wheeled me away & sent me to sleep...

Monday afternoon, (I was told) was when they woke me up on ICU. The first 24 hours were a complete blur, I don't remember much. I was in agony & don't think I could talk. As the hours passed I learnt that the operation had many difficulties & took over six hours, my stomach had been sliced open & the blockage was really bad, lesions from an operation I had when I was just six weeks old had separated from my bowel like rubber bands & caused obstruction over the course of time. I now had a stoma in place (which I am still getting used too) A stoma is part of my bowl outside of my body which is protected by a bag. A poo bag essentially, which I need to empty several times a day as it fills. So for the last 3 weeks I have had the cleanest asshole in the south hams if you will. I have named my stoma 'Steve' it's a lot to get used too, but I learned even more importantly that Steve saved my life. If the amazing surgeon hadn't operated that day I sure as hell wouldn't be here & it's knocked me for six. I know it sounds ridiculous what with having my double lung transplant, then the heart failure the following year, but this series of events has completely well & truly fucked me this time.

I was in ICU for a week & then back on Culm for 5 days until they allowed me home to rest. My movement is very limited, I am finding the stoma harder than I thought I would to except & I have felt like giving up on many occasions. I can't tell you why, I just feel numb. I haven't got the energy to face people, I am sat home just waiting to get better & it doesn't feel like I am. I know I am in reality but it just feels so slow. I absolutely hate feeling like this because at the end of the day I am ALIVE! My life was saved again.... Someone sure is looking down on me as I always scrape by somehow. This time it just feels different, I don't have my usual positivity, my fight, my drive. I am constantly breaking down & still so scared of what the next few weeks will bring. The plan now is for me to get as strong as I possibly can so Steve can be reversed, I am petrified, more surgery, but obviously not as invasive this time I hope.

My amazing lungs have done me so proud, the last few weeks, there is no way I would attempt lung function, but they have had my sats steady as a rock after coming off oxygen & I am clear as a bell so things could have been a lot trickier during my recovery. The day after I was woken from the operation, was my four year anniversary with my beautiful lungs, we had planned to go to the Eden project to celebrate but it wasn't to be. Instead, Stef brought me in a great big pink 4 helium balloon which made me smile as I lay there unable to move. I don't know what it is about July & August but I don't think I was made for Summer. Everything seems to go tits up during this time so think I will just celebrate life in the Winter from now on! 

I want to thank you all for your lovely messages of support, love & encouragement since I fell ill. Please forgive me if I haven't responded, it's very much baby steps for me at the moment in everything I do. I am sure things will become a lot better for me as time passes & I heal but emotionally I have taken a good battering as well as my body & I am feeling totally lost.

Thank you for taking the time to read

xxxxx

Life Is Precious, Treat It So

This isn't going to be a very nice blog, but I won't drag it out either. The world seems to like to test us in many ways & it's been one hell of a week for heart strings as I have just woke from another sleepless night to find out that another dearest friend has lost their fight not even a year post their double lung transplant.

My gorgeous friend Sarah, who had the most zany zest for life passed last week after many infections beyond her control. I last saw her & her lovely husband at my latest Harefield clinic. It was her 50th Birthday & she looked like she had slept with a coat hanger in her mouth as Dr Carby was letting her go home early so she could celebrate the day with her beloved, her smile was so big, she was so happy, I'll never forget that huge squeeze she gave me walking out the door. It was unexpected so I am still finding it hard to come to terms with the news that she is actually gone, my heart goes out to her husband, family & friends in North Devon.

Sweetdreams Sarah xxx

For the last couple of months it's been very difficult watching a close friend & her family coming to terms with losing her dad. After a horrendous short battle with a very aggressive motor neurone disease, George passed quietly last week at home surrounded by his family when there was nothing left the hospital could do for him. My friend has been in absolute bits & it's been very difficult to know what to say or do, you feel incredibly helpless, but hope that they know, I am here if or when they need, 24 / 7.

There is a collection in memory for my friends father, for the motor neurone disease society so if you have a few spare pennies this month & it is close to your heart, your donation would be greatly appreciated....

https://www.funeralzone.co.uk/justgiving/donate/17757/14943 

My friend, Andrew is going through absolute turmoil battling with his last stages of cystic fibrosis on & off the active transplant list at the moment. He's constantly being admitted & put on hold for his new lungs because he just becomes to poorly to be able to accept the huge operation. He has also had five calls to date & none of which have been a match. I really do feel for you & Helen my sweet, I hope that you get stronger every day & get those new shiny lungs you have been fighting so hard for...

& then it brings me to right now, receiving a message in the early hours that my little friend Hayley, after barely six whole months with her new lungs lost her massive battle with constant complications due to her transplant. This girl was incredible, she was pint size but packed a punch (reminded me a lot of myself) & had the most beautiful smile. I bonded with her instantly when we started travelling together to the clinics & back & her dad was a hoot. She thoroughly enjoyed meeting Crumble my skunk & couldn't wait to pop round & see the rest of the zoo. Sadly, it is not meant to be, and after losing their second daughter to cystic fibrosis I am absolutely heartbroken for Hayleys family. I hope you can rest now sweetheart, you & your sister have each other now. 

Sweetdreams Hayley xxx

I guess all I can say here is, forgive, forget, laugh as much as your body will let you & tell those ones around you that you love them. You will never know what is around the corner in this drama we call life, but please don't take it for granted, not one second as you will never know when you just might regret it.

Take care, have a peaceful Sunday & thank you for reading as always.

xxxxx