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.