Speed bump! Back to ED

Don't panic Mr Mannering!

We hit the Emergency Department this morning (Sunday, 10 days post-op) cos the flap was oozing stuff. It's ok, it's a "superficial infection of the skin" just at the edge of the flap and I'm now on antibiotics, it will be fine. Best to be over cautious. Especially as so much time, expertise, money and worry have gone into this extreme makeover, don't want the flap becoming a mud bath of slurry for the bugs to wallow in. Uh-uh.

The decision making process to go to ED was interesting. So, we'd had the week 1 follow up with Dr J and the dressing clinic on Wednesday. "See you in 3 months and we'll sign you off" he says. Er, cool, great news. It wasn't til we were in the car on the way home that J and I looked at each other and said "Do you know what we're supposed to do to look after this flap?". The dressing clinic was mental. Screaming child with burns in one cubicle, phones going off, hospital photographer with blinding flash taking photos of the flap - "I will need an off the shoulder one if that's ok" I thought he'd never ask. My personal paparazzi! All three dressings were getting the spa treatment while the nurse was distracting us with talk of coffee and cheese scones. Before we knew it we were out the door without as much as a follow up appt. We were lost. 

The district nurse came out Friday and noticed a touch of redness on the edge of the flap. It had felt a bit scratchy but the doc had had a look Wednesday and was happy so we didn't think anything of it. She said if we're in any doubt or the redness spreads to just head to ED and get the plastics registrar to take a look. J decided to call the dressings clinic anyhow for a follow up appt so we could get our questions answered. 

Saturday night we struck another milestone, my first beer and Little India (Kadai Chicken and Aloo Gobi, oh and Choosa Tikka to start. Fecking deadly). I only managed about 4 inches of beer (Tui) but I broke my alcohol cherry all the same. Chuffed with our evening we headed to bed. I checked the flap and noticed it had started to drip, not a tsunami just a trickle. Ok. What does this mean? Infection? Failure? So began the dance of decision-making. You know that bit in Love Actually when the bride has just seen the wedding video that the groomsman has done and she realizes he fancies her? Then he goes outside and does this to-and-fro indecision dance because he wants to tell her he loves her but he can't cos it will screw everything up with his best friend. Well we were a bit like that in and out of the bedroom. Is it bad enough to go to ED? Are we being over cautious? Screw it, J says, there's too much at stake here to take chances. We slapped a dressing on overnight to collect "evidence" of seepage (ever the scientist me!) and set the alarm for 8am. This morning we got up and there had been no further seepage which was good. We headed to ED, were seen and out within an hour. Fantastic. Armed with 1 gram of Flucoxacillin 4 times a day in liquid form, tastes like Mercury, I'm not complaining. I'll wash it down with a Wetherall. Triffic!

Just a wee speed bump on the road to recovery is how my niece put it. Do you think she might take after me?

Flap's first private viewing

The resocialising began Friday night as we popped round to see the sisters who had arrived from the UK on Thursday. These are my aunts, three of my moms eight sisters, who had traveled for a holiday of a lifetime to NZ. All three have had a tough time of it over the last couple of years as they nursed their husbands through illness and buried them. There's only one brother-in-law alive today out of the eight. A very close, loving group of strong, independent women, who I hold very dear to me. There's many a memory that we will revisit over the next few months, some sad, some happy, some downright embarrassing! So to have gotten through our ordeals and be alive and kicking at the other end is indeed a miracle that we can now look back on together. I am so incredibly grateful that I got through this and the girls are here, I'm getting better each day, and we can spend some time making new memories together. Boy are we in for a few laughs!

Me and J, with the help of mom, set up a surprise visit. Knocked on the door, Aunty BJ came to the door, her eyes popped out of her head when she saw us. So many times she had opened the door to me back home, it was just the same, beams of warm, chocolatey love coming right out of her. Man it was good to see her. Up the stairs I went and opened the door "Surprise! Surprise! It's Cilla 'ere". They were gob-smacked! "Can't believe you're standing in the doorway only a week after surgery! You look fantastic!" "We've all been praying for you". I know you have and I'm eternally grateful because all of that collective energy, whatever you wanna call it, healing vibes, the power of prayer, you're in my thoughts, all of it from everyone, gave me strength and hope. Knowing you have family and friends rooting for you on the outside really helps when you find yourself stuck in the dark clouds.

Not having read the blog, their sons and daughters and grandchildren were blogging on and telling them about it, we went through a quick overview. These ladies are the greatest story tellers. As we swapped our stories, theirs of their battles with caring for their husbands, mine with my flap, it became apparent to me that these women had been to hell and back yet they had taken it all in their stride. The fears, anxiety, confusion, life/death moments, that me and J had just been through (not for the first time, people, we're old hands at this game) plus the exhaustion they must have felt with the physical and emotional stress of caring for men who were probably twice their build, left me speechless. And now they face a new chapter in their lives without their companion. Coming half way round the world at that age (not disclosing age!) is a major achievement. My hope for them is that they have a wonderful holiday, taking time to reflect on what each of them want for themselves for the coming years. Travel brings distance and distance brings perspective. I don't care what anybody says, that journey is life-changing.

It wasn't long after dinner that Aunty BJ came up to me and said "let's see what they've done to you". Straight up. I wasn't apprehensive about slipping my leopard print silk scarf off my flap because I felt at home. They knew me and my former neck but I was surprised at their reaction nonetheless. "Oh what a magnificent job! They have given you a whole new neck! You can see the shape of it it's fantastic! Look at it". They all loved my new neck! And so I loved it too!

Positive reinforcement is probably the technical term. I call it unconditional love. And I can't get enough of it!

Walking a crooked road to recovery

Two weeks ago today I was in ICU, the dark side, my personal Armageddon, I shit you not, a twister of emotions, voices juddering in my head, dipping below the surface, grabbing the lifeline that was my yellow brick road, somewhere, over the rainbow. Catch a breath. Reach for those memories, snap that photo, linger. Hope. Pray. Is anyone there? They're all here. Every step of the way. Near and far. I'm not alone then. I can do this. We can do this. Love. Love will lead the way.

Recovery started with all the unconscious work that my body performed while I was asleep. 24 hours of the good stuff, the not knowing, before the awakening and the mental game of two halves begins. Waking up to being an invalid no less, albeit for a short time, thank god, but incapacitated nonetheless. Totally underestimated how that would make me feel. Mrs multitasker running around at 100 km/h beep beep Road Runner! Get out of the way losers! Wakes up as Ironside, the '70s TV crime show set in San Fran with the guy in a wheelchair, paralyzed from the waist down from a sniper bullet, solving crime for the SFPD. You tube it up people. OK I'm being dramatic, it's allowed, the old artistic license. "God bless us and save us" as mom would say. 

Loss of independence is a mind-fuck. Will it ever come back? Bed baths, bum wiping, those nurses are worth their weight in chocolate. "Sorry to put you through this". "Ah, this is nothing I've just had 3 patients bleed all over me". My beautiful J was willing to step in but there was no way on earth that I was gonna let him wipe the shite off my arse. Too much information. It was just the once anyhow, I was back to the old self wiping on the second bowel movement. Triffic!

You create a list of Physical firsts. First poo, first wee without catheter, wound pump removal, blood lines out, walk with frame, walk without frame, set of stairs, etc. You leave hospital and come home to a new set of goals. Showering with glad wrap on your donor site (thigh), detangling your hair (product promo: L'Oreal Leave in conditioner, Elvive. Rec by Jiss, the chief of nurse motivators in Plastics. J spent 3 days looking for "L'Oreal Elixir" until we realized the elixir was the morphine and the conditioner was Elvive). Man it feels good to have your hair washed. I've upgraded now to a Lush leave-in product called "RnB", deeeeellluuuuussssshhhhh.

Still working through the list. The true test will be next week when J goes back to work and I have to move on to the next stage of independence. Resocialising is on the list. Too easy to become a hermit. Virtual socializing has been a hit! Sitting in my pants in front of the iPad. You'll find me in one of three places. Ground control: the indoor chair in the lounge, a bedside table either side with all my techy stuff, books, mags, crochet, at hand. Chair with a view: outdoor chair on the covered deck, come rain or shine, fresh air, sound of Tuis and the brush of the trees in the wind. That's the heart of our house that deck area. Third space is bed - available for afternoon naps, district nurse visits and a couple other things on the road to recovery. Mmmwwwwwaaaaaahhhahahahahahahahahahahahaha!

So that's been my world for the last week. While I've been developing my online persona you've probably been thinking she's doing well, she's probably doing cartwheels across the living room floor. Nah, I've been wrapped in cotton wool, pampered and fed peeled cherries and plums by my lovely man J. Not having to lift a finger except on and off the keyboard. I have felt like the cat that got the cream except mine has been spread all over my furry belly, dolloped with strawberry jam and licked off. 

How could I not recover so well? Next stage of recovery is resocialising. Off to see the 3 aunts who have arrived from England last night. This will be a tonic, no doubt with a vodka thrown in! 

The Christmas Kereru

Do you ever have a sixth sense or have the feeling things are meant to be a certain way or that little messages get sent from our loved ones, our guardian angels? Could be the little man in your head telling you to put a dollar on the donkey in the next race. We have a running joke that dad has come back as a bumble bee and dive bombs us in the garden. Apparently bees are protective which might explain the dreams I had in hospital of swarming bees around a hive. There to protect me. Awesome drugs eh. Our Christmas Kereru story is one of those moments ...

As you know, the decision to go ahead with the surgery was taken a couple of days before Christmas. We saw Dr "Griff Rhys Jones" for a check up on the Monday, he did a "shock and awe" at the pulsating carotid and despite me saying "take a breath it's the first time you've seen it I've had it since June", Dr J was adamant we needed to do something. Me and my J were thinking, end of the year, 2016, yeah right. But we've got 3 of my mothers sisters coming over at the end of January and I've got a Learning Connexion course to start in February. 14th Jan. Done and dusted. Well we know how it all worked out now don't we, eh, hindsight and all, oh yeah, feeling pretty sure of yourself now eh Reenie. But back then during the run up to Christmas, time slowed down to the big slo-mo for us. We had all had a big, busy, stressful year and we were all looking forward to the big end of year exhalation. Catching up with family, beach time, Christmas ham, Heroes chocolates, new babies, wine-time, J on the guitar, mom singing Nobody's Child, bro singing Nobody's Child and the inevitable relationship-testing game of Articulate. Perfick!   

So we held back from sharing our news until after New Year. We didn't admit it to each other but every moment we looked on as if it could be our last. The Christmas toast - "2015 was a great year, 2016 will be even better" and the Auld Lang Syne that we forgot about and had to regroup everyone together for.  These moments were clouded with 'what if's'.

Let's go back to Christmas Eve. We kept our promise to go to mass with our newest family member, baby E. It was a beautiful evening. Afterwards me, J and mom came home, "opened the bar" and sat on the deck. We had company. In the form of a big, beautiful, bird sitting in amongst the lettuces, not moving a great deal. "Where's Woody?" We locked the cat down and observed Big Bird. That bird is not moving. It's not dead, could be stunned. They often smack into the window and take a while to get right. It was 9pm Christmas Eve and this bird wasn't going anywhere so we Googled "injured kereru". Drop bird off to Wellington zoo seemed the best solution for this injured native bird. Except the zoo was shut and we were away from Boxing Day for a couple of days. Ok we could lift it up, put it in a box and take it to a park and let it go. Go figure you mean. Nah. This bird was now in our care and we were gonna have to find room in the Inn for it. Our "stable" was a little hut made out of pongi trunks in the back garden. A little hideaway we inherited with the house, a potting shed. J whooshed Big Bird into the shed, put a pot of water and some nuts and leaves in there and nailed tarpaulin to keep the cat from getting in. There are loads of gaps between the trunks for air and weeds to grow through but not big enough for the cat to get in. Next day, Christmas Day, we checked on BB and he was right in the far corner under the bench. He wasn't going anywhere. Just before Christmas dinner, about 7pm, we took the tarp down to see if BB was ready for flight. He popped out alright and attempted a lift off but still not ready to fly. The wings opened out but one of them looked damaged. So back into solitary confinement for a few days. We'd check him again when we got back and if he was still struggling to fly we'd take him to the zoo. Boxing Day morning we set off early to meet up with family and our Christmas story about the bird in a manger made the rounds. 

We got back Tuesday and j went to check on BB. Unpinned the tarp. Looked under the benches. No sign of him. I went out and had a poke around. Nah. Not there. No evidence of cat action thank God. No feathers, no blood, nothing. It's like BB was never there. What The actual F***? Hang on a minute, what the hell happened to the roof? The plastic transparent corrugated roof of the pongi shed was split and there was a gaping hole of blue sky in its place! BB must have rested up, fixed his wing and made a run for it! It was a miracle! He rose again after the third day! Oh sorry wrong feast day. This was our good omen, our fortune cookie. Outside my window in Plastics there were two wood pigeons perched throughout my whole stay. One called Fred and one called George. My guardian angels... Sweet, sweet the memories you gave to me, you can't beat the memories you gave to me

The Flap - first impressions

Some of you maybe wondering why the blog, what is she doing, she's normally so tight lipped about her medical things. Don't mention the war! The ultimate elephant in the room - my catchphrase in all those work meetings - applied to my own personal battle, one I chose not to share, a coping mechanism to enable me to work, live and love in this world. What was hidden were the feelings I would have most mornings as I did the daily routine of showering and dressing my hole-y neck. Mostly, yes we can! But the odd day when it would be WTF? What am I doing? Who am I trying to kid? I'm walking around with 2 holes in my neck, pumped with prophylactic antibiotics that we're not even are doing anything - my very own orange arm bands to keep me afloat in a sea of denial. Slap a dressing on, cover it up, go to work like having had childhood cancer and living with the long term effects of radiation/surgery is something everyone gets to deal with, c'mon. The truth is it could be a hell of a lot worse. People have to deal with a lot worse than I do. So this coupled with an inherent "live everyday like its your last" philosophy is what gets me out of the door everyday. But what I've come to realize is that it's the love, support, respect of those in my life that has allowed me to sit on that elephant in the room for so long without pressing for an explanation. 

The blog isn't meant to be all about the surgery, it's meant to go beyond this and be a record of the year ahead. There I go again, skipping over the elephant! Anyhow, it is what it is to whoever reads it. 

What I have had done has changed me physically. For a good while I'm going to look different. No band aid big enough to hide my flap. By the six month post-surgery point the skin graft should have settled to normal skin colour, So that's July. Yaroo! Let's recap on what's been done surgically... I have 3 sites on my body that have been sliced and repositioned. Three abdominal muscles were removed from my tummy and attached to a whole heap of blood vessels in the neck. This is the muscle flap, a rectus abdominus flap. No skin was removed from my tummy only muscle under the skin. This was because they wanted a bigger stretch of skin to cover the flap and overlap the muscle to wrap it around the front of the neck. The skin graft itself was taken from the thigh and used to stretch over the muscle flap. 

What were my first impressions when I raised the mirror on day 4 post surgery? It was like a volcano had erupted on my neck and the lava was rolling down. My very own purple Willy Wonka's Franz Josef glacier. A glacier in shape but thankfully not in size! It is a work of art, a masterpiece of surgical invention, a collaborative piece of creativity. Beautiful. Wild, raw, shockingly beautiful. I'll take it thanks. I can only say what I'm saying because I've had to face up to that elephant in the room. Naked. Exposed. In doing so I really believe it has given me the strength and courage to get through these last few weeks. It's like mind, body and soul have aligned and I feel complete. Being honest with yourself and those around you via social media. Priceless. The modern age, beats talking to each other eh! 

Twelve days post surgery and the flap is looking less volcanic and more raspberry ripple in colour. It's shrunk back a little so the contour is more neck-like. The changes ahead will be remarkable. I'm looking forward to a whole new wardrobe of shirts for winter and swimwear for next summer. I'll need to cover up from the sun for the next 12-18 months so some UV-resistant clothing will be handy.   

I still find it hard to comprehend the level of skill required to do this procedure. I'm in awe of the surgical team who did it, they're world class at what they do. "Thank you" doesn't really cut it, what words do?

Facebook Addicts

Helllooooooo! What a beautiful day! What are you doing reading this blog? You should be out enjoying the weather! Maybe the Kiwis at least. NYC is a bit chilly today. Oh but to walk on untrodden snow in Central Park is a dream come true. 

So, today I have mainly been Chanelling Lisbeth Salander in an attempt to reach you quicker with my new posts I have been setting up a FB Like and Share for the blog. Really...it's not easy. Trying to follow a you tube video and crack HTML code when it's 28 degrees in here is a challenge. But that's my game. So I have set up what's Called a "fan page" on FB just for this blog. Don't like the concept of "fans" but no controlling FB jargon! So the FB page is called Reenie Survivin and if you "like" it you should get notified when I post something new on here. As long as I remember to Share.

Seriously, Hacking NASA would have been easier. 

Hospital food

I've always believed that you are what you eat. The root of good health lies in nutrition (as well as a dab of genetics of course). So food for me and j would be a major player in recovery, up there with the skills of the medical staff, the power of positive thinking, the support of family and friends. And patience. Time. This is what you need.

You know I'm a bit of a goal setter, well the nurses on Plastics are Olympians in this field. "I think we'll get you in the shower and wash your hair today" What? What about the knots? "I'll get the frame and you can have a walk about" I have 3 less abdominal muscles how can I stand straight? "The catheter comes out today so you'll be up and down to the toilet every hour, I'll just take your frame away". Subtle but deadly effective! Progress was 30-50% everyday according to J. I needed that push.

My chief Mr Motivator has been my beloved J. Saturday morning he's in with a spring in his step, shorts on, whistle round his neck (nah, no whistle! Ha). A Pak n Save bag full of food. "You gotta eat, you gotta feed the flap, that's what it needs". It was like a scene from the Invasion of the Bodysnatchers. We had our own little pod, the flap, that we were feeding so it would grow strong connections with the blood vessels around it. But to eat I had to swallow and I needed to work out what I could swallow and what might get stuck - swallowing has always been an issue (steady now, don't get naughty thoughts) due to the narrowing caused by the radiation/surgery. I choked on a tiny thyroxine tablet a few years back so only crush n eat tablets with yoghurt. Annoying as I'm the last to finish dinner and I avoid certain foods like steak, unless it's velvety liver-like smooth and thinly cut, but still a little pink. "How do you like your steak, madam?" Pull up a chair and take some notes! 

On the menu for Saturday was chocolate milk, that's all I could cope with. My mouth felt like a hundred ants covered in sand had been running around in it. The choc milk wasn't quite like the Lewis Creamery ones, it was a complete meal in itself and was less smooth, lighter, ok for one day but I was over it by the end of Saturday. I craved tomato soup. The cheapo creamy one from the tin. And I craved roast chicken dinner with mashed potato, mashed carrots and gravy. And what was on the hospital menu, puréed lasagne. Lasagne, puréed. The dirty ..... (Catherine Tate, ya gotta love her). They went to the effort of making the lasagne, you know, that's 3 different pots, the mince, the creamy cheesy sauce, the baking dish. Then they put it in a blender and pulped it. I dunno, there's something sinful about that whole concept. What the f*** would Nigella think? I am only too grateful for the free food and I know the costs and effort that go into the prep but its like if you ever get upgraded to Business class you realize that good food can be prepared on a plane. I think there's a challenge here for Jamie Oliver, make hospital food appetizing, stimulate the taste buds, cos simple food cooked and presented well is a major uplifter when you're in hospital. You'll wanna eat more, you'll recover quicker and be out of hospital sooner, saving the DHB maybe a nights accommodation. What do ya reckon Jamie? You up for it? 

So after 10 hours by my side my lovely J goes home to cook a chicken dinner which he brings in the next day and I devour as he tells me how he had to catch a live bird that Woody had brought home the night before! I love that man.

5 nights in Plastics ward all inclusive

So, leaving ICU to head to the Plastics ward on the evening after my surgery I'm lying on an air mattress, which has a timed program of masseur movements, the bed is being driven by a couple of potential All Blacks and I'm heading to my own room with a view of wainuiomata hills and a pinch of Wellington harbour. People would pay for this on holiday here in New Zealand. And thanks to our amazing health system it's all free. How lucky am I? Blessed. Spare a thought for our American friends who may have to fork out a lot of money for this treatment. 

As I mentioned in the ICU post, the first night in Plastics I was wired. My temperature was 38, my heart rate was 133, I was a worry to the nursing staff. Having said that, the room was 35 degrees and both radiators were on full. Apparently the flap likes to be warm and cosy so greater than 35 degrees is the way to go. Yup maybe for the flap Hun but not the rest of the room! It was like a Swedish sauna in there. I couldn't sleep at all. The cold presses came on my forehead, hands and feet. Think cool like Fonzy. Think Ice Queen. Cool beers on a perfect Wellington day. Snow, snow, snow! White Christmas with Bing Crosby, yes, we watched it Christmas Eve! Happy place, happy place, happy place. 

Middle of the night the on call Dr came in to see me. A lovely Irish accent purring across the warm air. Blood tests for inflammatory markers, chest X-ray, urine tests all ordered for the morning. Questions about prophylactic antibiotics being stopped and whether there was any chance of aspiration pneumonia from the intubation. It felt wonderful to have that reassurance that the lovely Eve from the garden of Eden was on my case. I said I think I'm probably just hot, it's awful hot in here, raging hot. Were you born on the sun? 

I could not rest my busy head that night. I managed to comatose everything from the neck down. All my limbs were heavy. But the head would not stop thinking. It was like a non stop film running at twice normal speed, jumping around, like an 8mm projected film, lots of static. I had had this before, many times, 3am in the morning moments of insomnia, running through the previous day's conversations. There must be a name for this cos it happens soooooo often to me and probably many others to. You just gotta go with it. It's a bad movie but you're at the end of a row of people and the cinema is a sell out. Sit it out, don't panic, it's ok to lose a nights sleep. 

At the end of the night came the morning and relief that there was a new day, I was now on Day 3, I'd met my 24 hours post surgery rejection target, heading towards the 48 hour target when the risk of failure would be halved again. I hadn't had a stroke from the carotid tying. I would not be returning to theatre. Another milestone reached! That must be 4 now, so that's 4 bottles of Veuve Cliquot Rouge for the eventual party of parties!

The Drs ward round this first morning in Plastics would be interesting. It was a Saturday but both my plastic surgeons were on for the weekend, nice. J arrived at "crack of sparrow". So did the docs. All talk of so far so good, flap really doing well, amazingly well, a quick zip through what they found under the skin - just crunchy stuff mainly, no sign of necrosis, bones intact (that's the spine, shudder!). Concerns and much discussion about the cause of the temperature spike and trachy heart rate during the night. Swinging between post surgery effects plus a hot room to possible signs of infection. The prophylactic antibiotics and any chance of aspiration pneumonia were rightly quashed. Having been awake for the intubation had reduced the chances of aspiration of any blood to the lungs (I'd had this happen on a previous attempt to intubate me so it was top of my concerns - a weekend in hospital with pneumonia tripping out on drugs was something that occasionally still haunts me). So bloods taken for culture came back clear, chest X-ray clear, let's try getting up and moving around. Stretching the lungs out a bit. A bit of recliner sitting. Perfick! That third night, Saturday, I slept the couple of hours in between the checks. It only got better, until I was clocking up 3 sets of 2 hourly naps during the night. 6 hours sleep! Brilliant. 

Saturday evening was also groundbreaking in that it was the night of the first bowel movement. Anyone who has had surgery will tell you that you will not be let out of hospital until you are able to prove you can pass a a solid. It's a big deal. A goal! My bro said "you won't feel human until you have your first shite Serena". I couldn't agree more. 

Home

first night in my own bed! How good was that!? Ok so it's an early start, 6am here in NZ, averaging 6 hours sleep a night, old habits die hard! Under strict instructions to sit still and stare a lot. Can't help feeling excited. It's like Christmas morning! 

Coming home yesterday - it hasn't sunk in yet - was sensory overload. Different voices, faces, noises, traffic, sunshine, green, people, all beautiful to see. A week in my life. Long week, long days, long freakin nights! I have the attention span of a flea. Can read one page of my book at a time. Looking at the Guardian's guide to the worlds cities in pictures yesterday online was lovely. Craving colours. 

Absolutely ravenously hungry! Talking about food, dreaming about food, reading about food, love food. I have about half hour of tongue action before my mouth gets tired and I can't eat any more. Except for Ice cream! 

Lots of processing still to do so I'll be blogging away later today......

To ICU and beyond!

thankfully the airheads kept me under for the whole night after surgery. Breathing tube still in until the following morning must've been hard for j to see but I couldn't have been any happier. I woke up in ICU truly believing that it was 10am Thursday morning and they had failed to intubate me. The lovely Windy Wellington couldnt convince me that it was a whole 24 hours post surgery, nah, you're lying I told her. Turning to J I said tell me honestly she's having me on right? No babe, the operation went ahead, it's gone really well, you've been here all night with a tube down your throat. "amazing! It's amazing! I can't believe it. It's amazing". It was amazing that I had no recollection of any of it post epiglottis. 

ICU is one of those places that I dunno, I always thought would be peaceful gardens of tranquility.patients in various states of rest fullness, drug induced comas, that kind of scene. Maybe it was party town that day but it was all whistles and bells down there from where I was lying. I had to go to my happy place a few times during the day. The day felt like the night cos of the dimmed lighting and my own body clock was screwed from not having processed the day I missed. So I was wired. Your imagination carries you away when you are behind a screen or curtain. So voices get exaggerated and noises fire up your imagination until you really believe you are in the middle of awar zone in Vietnam in the 60s,with Charlie sheen carrying you out of the jungle to a backdrop of Adagio for strings. God they give you good drugs in ICU.

Finding your happy place should you need it:

Preparation prior to surgery should always involve watching your favorite movies. Just not the ones where people die like About Time. Couldn't do that one even though it's a fave of ours. Musicals are especially good. "A spoonful of sugar helps the medicine go down" is abit obvious but trying to remember what comes after "tea a drink with jam and bread" is a good one when you are trying to focus your head away from the emergency trachy going on in the next cubicle. That yellow brick road couldn't have looked any more golden as I tried to remember what the tin man needed and who Dorothy met first on her way to the emerald city. Music has been key to most of my happy places. I was so lucky to have an ICU handheld radio - who uses these nowadays? - to hold onto like a comfort

blanket while my legs trembled below from anxiety. 

Musical hallucinations got me through a few special moments in ICU. can you imagine working there  day in day out. To the team in ICU I salute you, one day was enough for my nerves. You're legends. 

Epiglottis

Looking back to D-day I realize I only met some of the 20 or so medics for the very first time literally minutes before heading into the theatre. Theatre 4 I remember. Felt like a VIP as the queue of people wanting to discuss their role, the necessary consent and risk of .... Er.... Death with me was out the door and round the corner. Should've sold tickets on eBay! 

For us it was a huge deal but for these guys we are one of many. But no-one made us feel anything but special, cared for, taken seriously. All of the teams were focused with the plan and positive. Well, cautiously optimistic as "Dr GRJ" put it to J at the end of the operation. A mere 6 hours which was pretty good going.

The Airheads were in control it has to be said as they had hands on the breathing. Nerves of steel. Head honcho was the Yoda of Anaesthesia. He exuded zen calmness and control in the midst of all the fear I was trying to suppress. He was exactly what I needed. His wingman, Shakira - I know but I can't remember how to spell his name! Shakira the rego had walked me through their concerns briefly a couple of days before. It was all coming down to the epiglottis. That was the thinning bit where the breathing tube was likely to get stuck. Yoda had seen it on the scan. But along with all the other risks with Anaesthesia I kind of hid the epiglottis fact away as it was only briefly mentioned. Shakira had nonchalantly said oh if we do have a problem we can stick a needle in your neck and relax it, yeah anyway Shaka, let's move it along abit eh. 

So I walked into theatre 4 with my gown flapping in the wind, having left my backbone in the other room having to wait out the day. At least I had something to do. J had to wait it out. We knew the first hour would be crucial, all about the intubation. I can remember the lovely theatre nurse who was busily prepping me, totally focused, very normal, like she was setting up the market stall, get ya bananas 2 pound a pound! I remember the spray to numb the mouth and throat. Then the steady story of the cameras journey from the outside into my insides, like a David Attenborough documentary. We're going through the tunnel now, the tunnel king from the Great Escape dictates from his view of my inner tubes. It's all going well until they reach the epiglottis. It's the epiglottis I hear them say. Epiglottis! Oh ok I'll just try to relax the epiglottis then, that should do it, eh. Then a blackness and it's the last thing I hear until I'm waking up in ICU a whole day later! 

The next day Shaka came to see me. I said what happened was it all about the epiglottis? Yeah he said. Oh cos I really think I helped by relaxing the epiglottis when I heard you guys saying it was a struggle. Nah he said we used drugs, what you mean it wasn't an act of God then? Nah he says, it's us, we're the gods! I'd have to agree with him. Nerves of steel those guys. 

3 2 1 and I'm back in the room

wow. Amazing to have this operation out of the way. Couldn't wait to get back online to you guys. But it's been a bit of a shock and awe trying to get my brilliant head around this. Soooo many crack up stories to share with you. Can't wait but will have to take it slow. 

Just wanted to let you know I am ALIVE!!! And so far so good. All the docs are so happy with how it's going. Recovery will be rough. I didn't really believe I would get to the recovery part as the challenge for me was always going to be the first hour, intubation, putting the tube down to breath. Did I mention it was a fiber optic intubation, cameras lights action shoot with me AWAKE. You gotta love those Airheads. 

More later....

Hasta La Vista, baby

D-day.
It's time.
I'll be out for a couple of days. See you on the other side.
Reenie xxx

Compartmentalisation

twas the night before surgery and all through the house, not a creature was stirring not even a mouse.

The cats gone mad mind. Howling away to himself. Poor Woody. He's displaced. Been a bit bitey tonight. Bad cat.

Nil by mouth from midnight. No fluids after 6am. Check-in at Koru lounge at 7am. Flight to New York at 9am. 10 hour flight on the narcotics express arriving in the High Dependency Unit in time for dinner. 7 night stay in the Holiday Inn. Perfick. Note added January 21st: not actually going to New York, that's just my favorite place, my happy place, the place I'll go to in my dreams, when the monsters come. Surgery is in Hutt hospital, Wellington, New Zealand. 

Compartmentalization. That's my coping mechanism. I'll wake up on the day and deal with what's right in front of me. It's just a day right, one day, 8 hours of my life when I won't be in control. That is totally achievable. Achievable because we've spent the last 14 years deliberating, analysing, questioning, considering, risk-benefitting the f*** out of this puppy until we can say, in all honesty that we are READY!!! Which is great. But what about the feelings, can't control those, that's not in the PowerPoint. So we watched Inside Out (watch it citizens of the world!) and now I can visualize Joy and Sadness, Fear and Anger! They're like old friends. Perfick.

THANK YOU

To everyone who has read this blog, joined the site, sold their souls to mr Google, I thank you. Thank you for taking the time to make a comment - just a note that if you don't see your comment appear immediately it's because it's In a queue waiting for me to approve it for publication. Please follow me, subscribe for email updates, keep reading my blog cos I am loving writing it. Thanks for all your warm thoughts and words of support and encouragement. 

I have an army of love-soldiers behind me. We march the morrow!

Specially for J: "Are you afraid to die, Spartacus?" "No more than I was to be born"

Pre-Op Post

Stage One of engaging with the elephant in the room is now complete! Pre-Op meeting with Anaesthetic team and bloods done today. I am finally going ahead with the surgery I have been procrastinating about for the last 14 years. D-Day is Thursday, 2 sleeps away. Ready to roll, lock it in,  booked it, packed it, fecking off.

Was a tad nervous when the anaesthetist said he was still waiting for my patient files to arrive this morning, all 4 volumes of them. BP rose a little when the main guy to send me off to sleep was on a day off today so wouldn't get to meet him til the big day. But have to say after an hour of head locking and water torture we're pretty happy with the plan. I particularly liked the "patient controlled Morphine pump" that will deliver my very own cocktail at the touch of a button without having to leave a tip. God I love a gadget me. 

It will be standing room only on Thursday as there'll be 3 anaesthetistanaesthetist (that is such a hard word to spell!) - gonna shorten it to the Airheads, easier to spell. So 3 Airheads, one called Hans Christeien Anderson, 2 plastic surgeons (one who reminds me of Gryff Ryhs Jones, so he'll be Dr Jones from now on), an Orthopod and a Vascular surgeon. Should be selling tickets on eBAY at this rate.

Why all the fuss? It's not like yer Kim Kardashian (can't believe Kardashian auto-populated just then! FFS!). Well, until this week I really thought I was something special. Always being told by Docs that they hadn't seen a case like it. But thanks to FB and the power of my hairdresser I've discovered that there are at least 300 other long term survivors of Hodgkin's Disease who have similar symptoms from radiation fibrosis as me (did you Wiki-it yet??). Anyhow what's going to happen is they'll take....hang on this is the gorey bit so if you're not interested scroll down to the next paragraph...they'll take 3 of my abs and connect or graft it to my neck. Simple eh. Well the complication is that the neck has been irradiated back in the 1970's to try to cure the cancer (Hodgkin's) when I was 2. But that didn't quite do it so they operated to remove pretty much everything on the RH side of the neck. Which did cure me of cancer. Thank God! But the radiation still lingers, forever, in the tissue. Apparently, the radiation sort of boils up the skin and then it reforms with a different structure. It goes rock hard and woody over time and then breaks down exposing the blood vessels - perilously in my case as the carotid is very near the surface. For me, the radiation fibrosis has caused a couple of holes to appear which were manageable for over 10 years with dressings but open to infection, which happened a couple of times. 

So, just before Christmas, the decision was made to make a date for the extreme makeover ASAP just in case I snag the skin while shaving and cut the carotid. End of. Cuts the options down a bit eh. Me and J were obviously shell shocked and decided to keep it on the down low until after NY. Couldn't face going through the story with everyone, near and far. Geminis love to be centre of attention but this one definitely needed a shell to crawl into so my lovely husband provided that haven with his hard, protective Cancerian shell. Stoppit!

And so ends the first hurdle in the race. 

Blog etiquette

I've been pondering this whole blog thing for the last two days. Why blog? How long to blog? Whose it for? Do you tell anyone about it? Do you use your real name? Do you anonymize your friends but they'll work it out anyhow right? What is the blog etiquette? Can you swear? I can't write without swearing. How PC do you need to be? Who polices' it? Isn't it abit self-obsessive? Could be downright boring, stream of conscience shite.......

Ah f### it who cares, no-ones gonna find the freakin thing on google anyhow.

Back to the navel

first pass the first post

In the beginning.... Too boring .... Once upon a time.... Too dreamy..... Where to start? How to start? Why start?
Why?
I'll tell you why.
You have to start talking at some point. You can't keep it all in. So this is me making a start, to talk, blog, record things about me, what's happening in my world. I don't wanna miss any more moments, any more moments of memory making. And now is more important than any other time. The start of a year out of work. The chance to try something new, get creative, take time out, destress. And also schedule in that "elephant in the room" to have it's surgery having dodged the surgeons bullet for 15 years.
So that's the first post installed for the white picket fence I'm building this year. Here's to a happy ever after!