Simply Saturday

Superhero food

Simply Saturday has been a blissful day out in Wellington spent with my man J. Brunch at Scopa on Cuba Street was deadly. I was hanging out for my usual, Gambaretti pizza (fluffy prawns, chilli and garlic) and roasted potatoes, which we normally get in the evening. But it was brunch time and so we switched to Scopa Eggs Bene with bacon for me and Abruzzo eggs (chilli scrambled eggs) for J. Wow! My eggs came on a hash brown which had a lovely splash of chilli which was soooo unexpected but totally divine! J's Abruzzo was killer hot for me but hit the hot spot for himself. Lovely lovely! Then we went to see "Deadpool" at the Embassy. Absolutely perfect movie to see today! Deadpool is a Marvel superhero with attitude. My kinda attitude. Thinking I may have to switch red suits and go over to the dark side, put Ironman on the rack for awhile and go parteeee as Deadpool. Loved the one liners referencing sinead o'connor too. Loved that movie. Totally stinking. There's a much censored link to the trailer below. Go see it! 

Click here for link to trailer for Deadpool

Keep on keeping on

Film therapy. Is there such a thing? Well I just googled it and there it is! You can do an online course in cinema therapy to learn how to use the power of movies in the therapeutic process. I'm not sure the DVDs I chose for my duvet day would count towards therapy. "Dark Places" is a book written by Gillian Flynn, the author of Gone Girl. I must admit that I did get the book out of the library but wasn't in the right headspace to read it, it was a bit scary and I didn't wanna add to the drug induced hallucinations I was getting at night. So I saw they'd made a movie and thought I could handle that one. Charlize is in it so gotta be good. She's the sole survivor of a family massacre which her brother has been imprisoned for based on her testimony when she was 7. 20 years on and she's pulled into a "kill club", a group of crime enthusiasts who want to prove that her brother is innocent. Sounds ok doesn't it? Well the flashback story got a bit weird and satanic and druggy. It was getting a bit too unrealistic for a 1985 storyline. And then the cows got hit.  I had to turn it off, midway through. Slaughtering cows in the name of Satan? Sweet God really? Charlize what were you thinking? You looked like you had just stepped out of Mad Max in your lunch hour to make this movie. My hunch is there will be some kind of child abuse going on somewhere in that story. Glad I switched it off. And I didn't issue you a spoiler alert cos it's a crap film and you're not gonna watch it! 

Cleaning therapy. It doesn't exist according to Google. But I cleaned the house anyway and it felt good. It felt even better when J came in and asked "did you Hoover up today?" "Yeah!" "Tut" he says, "you should be taking it easy". I'm glad the place is all nice and clean for the weekend. More time to watch crap movies!

"Wait and see"

"Wait and see". That's what one of my lovely plastic surgeons told me today. I'm a whole 8 weeks post surgery, whoop whoop. Whoop de freakin whoop alright. Two months down the line just one month off the 3 month milestone. How am I doing? Am I on track? Am I where we expected me to be? Have I reached all your expectations? What would we do differently if we did it all again? What did we learn? I feel like one of my own freakin experiments....And the conclusion is that further work may still be required. WTF??!!?? 

To be absolutely honest here I'm having a day of devastation. Not to be confused with degustation although I would much prefer a feeding frenzy right now of wonderful gourmet delights all packaged up in easy to eat bite sized bundles of lushness! I'm getting side tracked here sorry. Those mini burgers or freshly made pakora. Oops. Sorry. Back to the feelings of desolation, frustration, anxiety, and the "what about me, it isn't fair, la de de da la de da da da". So I rock up to the dressing clinic this morning to get flappy's hole checked out and have a post hospital-stay chat with one of the Docs. The good news is that the wee hole that squirted the pus has healed nicely thanks to a wee bit of silver. So just keeping that covered and clean. The Doc sat down and told me the scans that were taken at the time of the infection showed a gap beneath the hole that they are concerned about. The gap may just heal itself if it is shallow enough or it may hang around and decide to grow a few more bug cocktails. We'll have to "wait and see". In the meantime, I'm on the antibs for another week until I go back to see Dr J who is most likely to stop them so we can "wait and see". 

So there are two possible outcomes of the "wait and see" approach that I can figure. The first and most hopeful is that we'll keep waiting and we will see no infection. If I were to draw what that feels like it would look like this:

The second option is that after maybe two weeks, or it could be six, who knows? I'll wake up one day and my neck will look like it's on fire. I could be anywhere in the country or in the world or I could be sitting still at home, "waiting and seeing". If this happens it will be a visit to ED but this time treatment will involve draining and cleaning out the gap, then sticking it together to close it. And this would involve another surgery..... You know the score, the "I'm awake" fiber optic intubation and the needle in the neck to relax the epiglottis so the breathing tube can go down. At least we know how to safely send me to sleep now. I'll know what to expect. Experienced hands. So it took me the drive from the hospital to straighten my head around all of this devastation and turn it around to be something manageable and not so devastating. 

I'm not usually down for too long, emotionally. I just need time to process. Can be ten minutes or a day under the duvet. Today it was both. Ten minutes in the car and then the afternoon under the duvet. I'm tired today. Getting up to pee 3 times a night cos of the Stabilising drug is a factor but not the only one. I'm mentally exhausted from trying to be on top of everything that's been happening to me. Trying to be one step ahead all the time. I'm feeling pretty yuk and over it to be honest. It feels like I have to reset the clock and start over again. Slowly slowly. But then I also have to keep hold of hope. Can't let that go. Cos there is a lot of hope in this latest news. And I know I am unable to be down for long cos I am a superhero aren't I? But for today, I'm mainly feeling devastated so I'm going back to the duvet with my cheese and crackers.

Bush Tucker Trial

Cats get nine lives right? Well I must be on life 7 at least? Maybe I'm not Ironman maybe I'm Catwoman? Looks like I got through another battle with the bugs. I chose to channel Charlize this time round. Screw the yellow brick road imagery that got me through the horrors of ICU. Mad Max Fury Road. A movie about survival. Stylish movie. Wicked soundtrack. And it has Tom Hardy in it. Winner.

Nice spot for hot chips

I'm out of hospital but I'm not yet done with the drugs. Three times a day I'm challenged to do the antibiotic equivalent of the Bush Tucker Trial. Round 1 is to crush the Probenecid tablet and try to dissolve it in water using a syringe. The Medsafe pdf pack insert says its dissolvable in alcohol.... Tempting, tempting! Then add the yellow slurry to a half cup of strawberry yoghurt. Mix rapidly with a teaspoon to prevent nausea turning into vomit. Eat the drugged yoghurt mix. Wait half an hour before proceeding to next stage. Round 2 take the liquid Flucoxacillin out of the fridge and pour 20ml into a measuring cup. Go to your happy place. Preferably with a fan blowing, like Beyoncé, on your face to prevent nausea. Take a deep breath, hold nose and swallow in 4 sips. Immediately wash down with half a liter of water and pop a Werther's original in your mouth. Say three Hail Mary's to prevent reflux. In half an hour eat a mallow puff, or after 20 minutes if you chew it slowly. I've got 6 weeks of this shit man! 

Survivors Survivin. Having something positive to live for and playing it out in your minds eye. My jobs not done here I guess. Just gotta figure out what I'm meant to be doing with my life now. I guess we all should have that question to ask ourselves, what is the meaning of life, my life. That doesn't usually pop up until you're at a crossroads, experiencing grief, facing illness or recovering from a traumatic experience that you thought you might not survive. In my experience there's only a small window of time when I think seriously about this question and that's usually when I'm in the throws of Survivin or just afterwards. If I don't nail it during this time, nail the answer or give the question some air, it puffs away as I recover and start to get back to normal. I do have a few buds on my tree of life that are gonna need some nurturing if they're ever gonna bloom..... 

click here for link to Mad Max Fury Road clip

Leaving hospital now! Whoop!

"I'm a celebrity get me out of here!" Is the perfect way to end my week of Survivin in plastics. I fought hard with my army of white knights, my Weapons of mass destruction and my legions of "virtual" Spartan slaves following me on the Internet. For a time there I was Spartacus! I have survived again.

What was that infection all about then? Well, most likely due to an infected suture/stitch at the top edge of the flap. There was a wobble for a second or two when the CT scan reported the "possibility" of osteomyelitis, that's infection of the bone. But the consensus opinion from all sides of the house is that this is calcified tissue leftover from radiation damage. I'm clinically well so the infection has responded to the antibs. No need to change treatment. I have my backpack rattling with oral goodies that taste of the requisite metal but this time I have a stabilizer which will keep the antibs in my body longer. Yes I have a new super power! I have the ability to stabilize stuff! Holding it in! The big plus is that I don't have to be too worried about taking on an empty stomach. I can eat away all day which is what I love to do so I'll be happy happy. The first thing I'm gonna do when I leave here is get hot chips and go to the beach to eat them (don't worry I'll be in the car away from the damaging effects of UV). Then I'm going home with my lovely hubby for a cuddle and a good cry!!!!!!! 

You know you're better when....

Visitation by the Priest

You know you're feeling better when all you can think of saying is "well Father do you think Spotlight deserved the Oscar?". It was me own fault - hanging onto some indoctrinated catholic guilt there are we reenie? - when I filled out the form for admission for surgery I ticked Roman Catholic. There was another box to tick if you wanted a visit from a priest which I left blank. I have had two different visitors come up to see me despite my preference not too. Why did I declare I was RC? its not like I'm actively engaged with the church anymore. I actually can't relate to the organized religion and haven't done since I was about 12. But I've been raised within a Catholic environment and I have my own sense of spirituality which is personal yet overlaps some of the Catholic virtues. I guess I'm a great believer in working from within a group or organization to make changes for the good. Ha, whatever, move over Hilary Clinton! Anyway, there it is I put down RC probably cos I would be damned if I didn't!

When the priest visited our house in the past we'd all hide in the kitchen and not open the front door to him. When mom was in her flat we'd actually have to hide under the kitchen counter to stay out of sight. Bad isn't it? So when the knock at the door came here I had nowhere to hide. There was no visual indication that this was God visiting me. Well you see that's what we were taught to believe, the church is Jesus house and when the priest visits us it's Jesus popping round for a chat. No priest collar or black robe, no bible. Then again Jesus wouldn't have any of those.

I had two visitors on different days. One female and one male. no prizes for guessing which one was the priest. Each had completely different approaches. Ok so there was probably a 30 year age difference which may have influenced their outlook. But essentially what they had in common was being Catholic and giving communion if you wanted it. Wonder how many takers they had for the dry wafer, sorry, that would be body of Christ, in a ward made up mostly of patients with throat issues? So, with the lady I felt comfortable talking about what I'd been through because she was interested, she was compassionate, she listened to me. I talked openly and positively. I felt good afterwards. Yep she asked if I wanted to receive communion, I declined. She said no problem. It was a friendly experience and I'd talk to her again. She was going in for her own surgery soon so she shared her thoughts on that with me. It was a two way normal conversation. Like you would have with a friend although I did feel I needed to drop in a few choice examples of how I feel I'm a good citizen and how we are Godparents etc, she chuckled, "I'm sure you are a good person Serena".

Today was the male visitor. He introduced himself as the chaplain, Father D, and asked me how I was today. I said really good. He seemed surprised and repeated "you feel really good oh?". Yeah I do. We did the where do you live question. I just gave one word answer. But with the lady I went into details about where we come from ,etc. He was old school And I could feel it as soon as he started talking. Patronizing. When he asked about communion I said no thanks. He asked again and I said nah it's been a while. He said "God's not looking down his nose at you"  - no, but you are you smug little man. "You can still take communion" - er, aren't you forgetting a sacrament there now Father, like confession now? I could feel resentment building up the more he went on. "I want you to think about bringing God into your marriage". Mmmmmm and how would you suggest I do that exactly? "you see at the end, we all will get to the end, the only thing we can take with us is God". Flipping eck. I offered up our Christmas Eve trip to mass albeit a little bashfully but he wasn't listening. I could've got me soap box out and given him a lecture on my approach to spirituality and religion and how I practice those morals in my life. What would be the point? I didn't feel I needed his blessing anyway. He left taking his shiny cream waist huggers with him.

I felt the bile rise in my throat for the years of resentment I have had for this institute. Not only has it failed to evolve and adapt to this world we live in but it's been exposed as an institute that has hidden decades of paedophilia from its loyal believers and it's still standing. This man, Father D, represented this institute and although he probably wasn't a paedophile, I couldn't see beyond that because of his patronizing, oppressive behavior. The Catholic Church needs an extreme makeover. It needs more representatives like the lady who I met. Good luck to it I hope it finds a leader who is has some experience in change management. In the meantime, I'm thinking of conducting an experiment, I might tick one of the other religions next time and see what I think of the experience. Kerchang!

If you haven't seen Spotlight the movie get it on DVD cos I don't think it was the best film of 2015 but it was a palatable documentation of how the Boston priest abuse scandal opened the can of worms.

Click here for Spotlight film trailer

Battle update from the frontline

Surpise visit from the awesome foursome sisters today

I've been busy battling the bugs with my white army of knights and our antibiotic weapons of mass destruction. What a 24 hours! The last I posted was breaking news of an abscess bursting through flappy which was very dramatic and reminded me of that first time I met flappy in the mirror. I thought he was like a volcano going off. Well flappy erupted the other night and there was golden lava flowing down my neck. I took a picture but it's way too gross to post! I was so happy to see it I was fist pumping. With all that gunk out of the way the antibiotics have been able to really get in an do the job. 

On closer inspection the breaking point is in the non-flappy part, normal skin, right on the edge of the flap. I had an ultrasound done yesterday to try to find the collection of pus beneath the hole and measure how much is there. In ultrasounds, liquid is dark and air shows up as white but so does metal and bone. With my abnormal neck structure there's lots of calcified tissue from radiation damage which we know looks like bony bits so this confuses the interpretation of the scan. So we were on the fence with the results. Today I had a CT scan with a transfer dye to help show up the bony bits. So I did the easy bit, just lying down for a wee while, and now the Docs have to do the jigsaw. I'm hoping that these images will help them determine if its ironic or not! 

This is what I'm gathering from the various conversations and musings over the last 24 hours. There are two options that could have caused this infection. Either, one of the sutures/stitches has become infected or, there is a deeper infection possibly involving the bone (spine or jaw) which may have always been there or could've been introduced at surgery. If it's the bone option then it's ironic and I'm likely to be on the IV antibs for a while longer and it could recur periodically. If it's sutures then it's likely I'll go straight to oral antibiotics for a few weeks. So this is a big jigsaw puzzle to sort out for the docs and will be the basis of my get out of jail plan.

One other thing I've been struggling with in here has been the lines or candulas. The antibs are pretty rough on the veins so the IV lines don't last too long before they become too painful and need to come out. I'm on my fourth one in 5 days! A100ml of the good stuff is getting put through the line every 6 hours, however almost one a day is madness Ted. There were a couple of failed attempts too which meant we were running out of decent easy to find veins. Anybody feeling faint yet? So the last three lines were put in by an anaesthetist. One used ultrasound to find the vein! I never knew you could do that! And the speed and confidence of these guys is just incredible. They must do it in their sleep. They're like robots. Somehow I managed to rip the last line out of my arm today and didn't know I was bleeding out until the nurse came to give me a dose of antibs! Oops! No idea how I managed that but I felt bad about it. I'd just been for the CT scan and they used the same line for the dye, it's ok that's SOP apparently. It was checked and fine afterwards. I must've pulled it out with the sleeve of my pjs. Oops! Back down to Anaesthesia! I brought sweets this time to bribe them! "You're welcome anytime" he said, "hopefully I won't be taking you up on that offer" says me. 

So the morning ward round should be interesting. Should get the swab results from the lava, should get the CT findings and hopefully the docs will have pulled an all nighter and finished the puzzle, come up with a plan to get me out of here! I bet there's one piece missing........