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........

Isn't it ironic, don't you think?

Stormy weather ahead

I remember buying that album by Alanis Morissette, Jagged Little Pill, listening to Isn't it ironic on headphones in the shop and thinking it was the freshest thing I'd heard in awhile. Then the Irish comedian Ed Byrne did a skit of the song which has become his trademark and I could never listen to the song again. Until today.....

Isn't it ironic that the main reason I had this surgery was to close over the vampire wounds thereby preventing infection? Maybe I haven't fully explained life before flappy but having an open wound exposes you to risk of infection. I say open, it was always covered with a dressing but the bastard bugs are everywhere man! I've been hospitalized 3 times over the past few years with infection of the neck. It's a tough battle each time. You get to know the signs but it's still a battle to get you over the line to ED. You look for common denominators, links so you can be quicker to react the next time. For me it looked like a whole heap of stress and exhaustion right before a viral infection which would end up with me in ED with the skin infection. 5 days of IV antibs followed by a week of oral and the inflammation would slowly go down. The last event has got to have been the worst by far. I couldn't
swallow with the pain in my throat and I couldn't sleep cos I had to keep clearing the mucus from my mouth.. I was surrounded by a sea of spit laden tissues, it was gross. It ended quite dramatically when an abscess bloomed and burst on the front of my neck. The Reg took great delight in squeezing the gunk out and declaring 'look this is the eye of the infection" - a ball of green snot. But after that it was plain sailing the antibs could do their work and I was home the 2 days after.

After each event there's the inevitable conversation about plastics and when/if to do the surgery. It was always like a weighing scales, balancing the risk of surgery with the risk of another infection. Surgery had the risk of flap failure which meant an additional trip to theatre and another chunk of muscle taken from somewhere else. The 'what if that fails' question left me with the fact that there's no going back once you rip the front of your neck open. If flappy fails twice then you just sit it out in ICU until you die. I mean what else are you gonna do? All the major blood vessels would be exposed, that doesn't leave much quality of life, do you get the picture? That's the risk that kept me from the theatre door for 14 years. Just sayin.

So I lived with the risk of infection. Careful wound care and prophylactic antibs, the cephalexin twice a day which again was the subject of debate amongst the various docs. Was it actually doing anything? Was there an underlying infection there maybe in the bone? Taking the antibs prophylactic ally was a bit of a lottery ticket but one that me and J hung onto like a life buoy. Where's the harm in taking precautions. I lived infection free for nearly 3 years, but then was that a coincidence too? Was it also a coincidence that I hit another wall of infection when I came off these antibs for one week cos 'there's one way to find out if you still need them, fingers crossed'? Or that time it could've been a perfect storm, they only come round once in a while don't they? 

So I'm sitting here on the bed in my wee room on my own and that song comes in my head. Isn't it ironic? I wonder what Ed Byrne would think about my conundrum. I have the same presentation as previous infections but no gaping holes cos flappy is there Covering them. Oh and by the way, those prophylactic antibiotics I was on? They were stopped on D-day cos there was no evidence of bacterial growth on samples taken at surgery. Better to treat an infection specifically at the time of active infection. Which is where I'm at now. If this current infection is going to be a recurring calendar event then Ed would probably say that yeah it is ironic. But if it's just the consequences of major complicated surgery then it's just incredible bad luck. I appreciate irony but not in this case. I'll be glad to see the back of these bugs.

Medical disclaimer: Reenie is under the influence of drugs so cannot be held responsible for any shite talked on this post.

BREAKING NEWS: 
Rivers of caramel have been seen at the site of the battle of the bugs. Masses of bacteria have lost their lives as fighting continues through the night on flappy. The breakthrough came when Reenie noticed something resembling gravy on her pajama top. Looking in the mirror she beheld the most wondrous sight - pus running down the side of flappy in streams of gold! This is a sure sign that the white knights with their weapons of mass destruction, Flucoxacillin, are nearing victory. Watch this space we'll keep posting as the events unfold.

Battle of the bugs!

Morning campers! Boy I'm a sucker for a positive blog post me! Nice view but it's gonna turn to shit later. Ouch just dropped the positivity pen!

Well I got through the night and even managed to sleep - with my ear plugs in. Which was nice. Pumping through the antibiotics at 2g a shot in the arm, every six hours, love it. The Drs came round this morning and could see an improvement from yesterday and have a name for the infection, it's cellulitis, I wiki-d it up and it's a skin infection that spreads quickly and is caused by streptococcus or staphylococcus bacteria. Symptoms are fever, tiredness, soreness in the area, redness and swelling. Bingo! I seem to be responding to the drugs although it could take between 7 and 10 days to fully recover. So I reckon I'll be here a few days yet until flappy settles down a bit. 

One of the ED Drs said a cute thing yesterday. She was an American lady really onto it, I liked her a lot. She introduced herself and then said, 'I've been looking at your list of medical issues that you've had to deal with and I'm surprised there isn't a whole hospital wing named after you'. Hahahahaha! You could've built a ward with the amount of resources I've pulled in over the years! Nah I'm not so high maintenance honestly. That's part of my problem, the head problem, you know? Not wanting my medical list to define me cos I am so like everyone else, right? Well, I'm getting better at embracing my story and writing this blog is part of that emancipation. But it is hard to let go of values you've been living your life by for over 40 years. I have to retrain my brain. And I think I'm gonna need some help with that. So I'm thinking of getting some counseling. When you're lying in a hospital bed you can come up with these things and then you get better, go home and think you don't need help. So you don't go to the GP to follow up on these things. Until the next bump in the road happens and you find its just a little bit harder to face another fight. It's just another knock back and we'll get through it cos we're great at survival mode. But it's taking its toll. Chipping away in the background. Two steps forward one step back. 

I can't say I'm surprised that I'm gonna need counseling. How the hell have I managed to get this far without it? and you know what, at least two of my friends have gently suggested it. So I'm going to do it. 

Another Saturday night in Plastics

I'm back in hospital. Nice view.

I honestly can't believe it. The last post was just two days ago - the one with the photo of flappy six weeks in - looking great. And now in a matter of 48 hours flappy has spit the dummy and I'm back in the Plastics ward on intravenous (IV) antibiotics. WTactualF?

What am I like? We had the weekend planned out, off to Wellington on Sunday for a day out, eating, shopping and cinema. It is our wedding anniversary this weekend and we were looking forward to a day of normality as we haven't had much of that over the last few weeks. I'd had a good start to the week and had met up with friends for coffee and lunch and a trip to the park. Did I overdo it abit this week? 3 trips out? I felt like I was coming down with a virus mid week, not sleeping great, blocked nose, sore throat. Then Thursday afternoon the glands popped up in my neck. And they kept popping up. Really tender. Mmmmmm. We were on alert. The sore throat and night sweats kept me awake enough to take panadol at 4am Saturday. When we got up this morning it was clear that J wasn't heading out for a cycle ride and we weren't going to our friends BBQ, instead we were going to ED at 10am. Reading this back now, in hindsight, I am wondering why the fuck that I didn't go to ED earlier? Ok it may have been Friday night instead of Saturday morning. Would 12 hours have made a difference? But looking at the speed at which the redness on my neck has spread today, I have the pen markings at the edge of the redness, I realize that every minute matters not just hours or days.So I've spent best part of today working through this and I have to say it's been a topic of fierce debate between me and my loved one. 

I think my head is at fault here. It's racing ahead of body again, wanting to be normal and "not a problem"! The force is definitely strong in this one. Not only forceful but also annoyingly independent verging on arrogant. Strong words indeed. This is me trying to give head a heads up here. Another lesson hopefully learnt. 

I don't want another Saturday night in Plastics hooked up to IV antibiotics. Cos I know what comes next, the oral Flucoxacillin which tastes like metal, the take away from Plastics to be taken for 7 days that's 1 hour before food and two hours after food. Which means I'm set back a week on the crooked road to recovery. Which means normality is on hold for another couple of weeks. This is a tough road to walk. Mentally more than physically. 

But as my loving husband tells me, "it's not the end of the world". And it certainly isn't. And things could be a lot worse. I am lucky to be alive. Each day we are truly grateful for. This is just a small blip and the antibiotics will do their job. It's not rocket science....... There must be a few more cliches I can pull out of the bag...... But at the end of the day I am here in this moment writing this blog and I am feeling grand. A little warm but you know how they like to crank the heating up in this place, thermometer says 23 degrees. 

For my devoted, endlessly loving husband, J, "is this your good ear George Bailey? I'll love you til the day I die!", It's a Wonderful Life we are having babe. Happy Anniversary!