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! 

Photo! The 6 week milestone!

Six weeks ago today I was out cold in ICU having gone through surgery to reconstruct and repair the radiation damage to my neck, a long term effect of surviving Hodgkin's disease over 45 years ago. Today I'm six weeks on from surgery and looking pretty good I have to say! I am so happy with the work of art that was created by those incredible surgeons. It is truly inspiring. What an incredible journey. And I'm still traveling. All aboard the transition express!! Toot toot!

A quick update on the three sites: Flappy is looking great, just a tiny spot of ooze that is clear fluid that I'm covering up, a bit of silver nitrate is being used to seal it up. This small area of ooze was caused by a suture/stitch getting infected. So the focus now is on getting flappy fit and moving. I'm out and about more this week so I'm driving and naturally moving my head and neck so that's feeling good. I have to remember to do my stretches regularly too although I'm not keen on risking undoing the healing process for the oozey area though. Tummy-tuck has turned a corner this week and is feeling totally normal again which is funny cos they always said it would take 6 weeks not a day before! Tummy is fine with the driving too. The scar is softening up and is a lovely big purple 'J' stretching from my ribs to my bikini line. That's my love tattoo! The donor site on my thigh is good just needs to lighten up a little as it looks a bit blotchy and scalded. Perfectly healed though.

The fourth site, my head, has its moments. It gets frustrated that the body hanging below it is still so slow and sleepy. Head is all ready to part-ee on a Saturday night but body is like, no feckin way Jose! Give me some quiet time and get me away from all this noise! Head is day dreaming of a glass of cool Pinot Gris while body is saying "I'm waking up dehydrated from this heat and you want me to add alcohol to the mix?" Body just wants to curl up in bed at 9pm and read a book but head is trying to pull body out of bed to check FB. Head gives in only when body agrees to reading another couple of chapters. But body pays the price when head rules the day and falls flat on heads face in the middle of the afternoon for nap time!

I feel I'm at a transition stage now. I've done the surgery, that's behind me, I'm still in recovery phase but I'm ready to move along to the next chapter in my life. That chapter was always going to be about developing my creative side. Unleashing the lion. Letting it roar and seeing what comes of its freedom. My plan was always to take on the Certificate in Art and Creativity at the Learning Connexion but I may not start that until later in the year as first intake was in February which I've missed. I've been going through the video presentations from the TLC site which hosted a Creativity Challenge last year and I was inspired by this talk called Twenty minutes. It's by a researcher from Kings college in London who asks what would you do if you were given 20 minutes a day free to be creative. It's part of a bigger national creative challenge that started last year in the UK called 64 million artists. The thing that struck me from the talk was we can spend too long just thinking about being creative, talking about it, fantasizing about it, good lord Pinterest has a lot to answer for in terms of time wasting on virtual creativity. Well that's something I'm guilty of, thinking too much and not having the time to allow myself to be creative. The 3 word mantra for this UK creative challenge is firstly 'Do' something creative, secondly 'Think' about what you've created and how you feel about it and thirdly 'Share' it by social media. But what if you don't know how to 'do' it or where to start or what classes as being creative. Quite simply being creative is doing something or seeing something that's new to you. thats my take but check out the talk cos the guy with the PhD says it better and has heaps of examples. Anyhow, I've signed up for this challenge on the 64 million artists website and the plan is that I'll receive an email each day with a suggestion for spending my 20 minutes creatively. Now I'm a bit late with this challenge, apparently it was set up for January so let's hope there's more than 31 days in their January! If I don't get an email I'll have to invent my own ways of being creative which will be interesting! 

I guess I am transitioning in many different ways this year. I didn't expect the extreme makeover to happen at the beginning of this year so my scheduling is a bit out. But I am lucky to have this time now and with the surgery behind me I am in the best possible place to make the most of all this free space in my head, my heart and my life. I think with any form of art you need to set time aside and you need to practice, practice, practice. Malcolm Gladwell said it takes roughly 10000 hours of practice to achieve mastery in a field. That's a lot of felt elephants! 

Another little milestone

I am 5 weeks post surgery. I am alive and well. 

Still can't believe it. We actually went ahead and did it. And it worked!?! WTF? Me and J have those moments every so often, sometimes at the same time, when time stops and you remember what you've been through and this warm, syrupy, snugly feeling disperses over your entire body until you are smothered in goo-ey loveliness. It's purest glee. I had one of those moments on Wednesday at the dressing clinic at the hospital. I've been going every Wednesday since I was discharged. As you know the dressings are getting smaller and smaller. Flappy has a postage stamp sticker on the front now which I am told will fall off at some point and then he'll be free (flappy is a 'he'? Ok I'll go with that). And so will I! Cos I don't need to go back on a Wednesday anymore! Yay! It may not seem like a big deal but it's another step towards independence and normality for me, if that's what I'm after?! When the Dr told me that I didn't need to come back until the follow up appointment in a month I got the goo-ey feeling. I said to the nurse, "this is just so good isn't it? I'm so pleased we did it". Poor woman must've thought I was on drugs. 

So it's all good on the physical front in terms of healing. How's my head doing? Well I'd say it's still bloody processing. I am dreaming like a crazee, every night. No nightmares though. I'm napping in the afternoon, it's a necessity, even if it's just a half hour I need it. I guess it's stamina that I need to build and I think light exercise is gonna help with that. So this morning I tried a few stretches to see if there were any remnants of Pilates in those muscles. It felt good to stretch my back out a bit and my calves and arms. My legs feel as heavy as tree trunks so I'm missing those 3 abs that formed my core. Tut! So I'll make an appointment with my Pilates physio in a week or so and see where we can pick up from. Flappy has been having a stretch too, he's stiff as a board. He's getting lots of moisturizing to soften him up too. 

Did a bit of retail therapy with my lil-niece during the week which is always good for the morale. And there's also quite a bit of exercise there walking round the mall, trying stuff on! Yep I'll take that. Then today, cos it's Friday, I achieved another little milestone, the first solo drive in the car since the op. Oh yeah! It was the weirdest feeling going out on my own in the car. It was like my body knew how to drive but my head was somewhere else. Like an out of body experience. Happy to say there were no "visitors" in the car today! Hehehe! But my head was fluffy! Like I was overcompensating. I only went down the road to Silverstream to post a parcel. It's like a 3 minute drive. But it was great to get there, park up, walk around, have a chat with the post lady, buy a pie, get back home, all without killing anybody. So I'd say that was another cherry popped - driving solo short distances, tick!