Thursday 15 September 2011

So here's the deal....

When I say Welcome to my world, I'm kinda welcoming myself into it too. 

The world I used to know has changed dramatically in the space of 23 days and will never be the same.

My name is Wendy and I'm 30 years old.  I have a fiancee, Tim, and between us we have 3 boys, aged 10, 8, and 6 - Mr 6 lives with us full time.  We live on a small block of land in the Palmerston North area, and have a farmyard of animals to keep us busy.  Up until my world turned sideways I was a part time preschool teacher and full time student - I'm 12 weeks out from finishing my diploma of teaching ECE... how's that for timing?!  As you will appreciate if/when you read on things on this front are currently on hold, but I am sure that it wont be too long before I am back to work and get this study stuff completed... I WILL graduate with my girls early next year.

This is my story from the last 20 odd days... it's a lot to take in. I am aware that some of you may know already, and some might just be joining me, so bare with me and if you get through it all - thank you and I hope you will continue to join me on my journey....

After suffering for the best part of 7 weeks with progressively worsening headaches and nausea, 6 return trips to the GP (prescriptions for 18 tablets a day to manage my pain which was NOT ), two to the osteopath and two to a Bowen therapist it was the insight of my Mum to book me into an Optometrist to have my eyes looked at. On the 24th of August 2011 I fronted for my appointment and the problem was immediately evident with the first test undertaken... he could see that the optic nerves in both eyes were under considerable pressure which clearly wasn't normal and the possible cause of my headaches.  We continued on with the testing and on the bright side I didn't need glasses however he said he'd inform my GP of what he'd found.

  Within half an hour of leaving the practice that afternoon I received a call from my GP informing me that the Optometrist had phoned and demanded I be seen, so I headed immediately to them where my eyes were examined for the FIRST time by the GP in the 6 visits I'd made.  She agreed that yes there was some swelling and ordered a CT scan for the next day.

I returned to work next day as normal and awaited a time for my CT scan appointment.  At 2pm Mum came to meet me at Broadway Radiology, as she was in town and thought moral support could be needed (thank heavens!) and we waited for our turn.  The staff were lovely and the scan very straight-forward and not at all stressful... until the Radiologist came in followed by a gaggle of people - with Mum - and my heart sank.

  I was told VERY gently that "there is something going on in your brain" and that they needed to get me to the hospital so an ambulance was on its way.  The rest of that moment was a blur, with me needing a wee lie down and Mum heading away to try and make phone calls - Dad was working in Wanganui, and Tim was in Wellington on an overnight business trip.  Us girls were left to sort it for the mean time and the ambulance arrived faster than I'd ever thought.  Everyone was being so gentle with me, frighteningly so... almost like they were expecting me to drop dead in front of them.

 The Radiographer's hands were shaking as he delivered the news to us in the CT room, and everyone was visibly shaken... clearly not an every day occurrence for the team.  My hands managed to stop shaking enough for me to dial my best friend Nicci so Mum could tell her what had happened and please could she meet us at hospital for extra girl-power.  Poor Mum also had to ring Tim and ask him to come back from Wellington - a drive he said he 'barely remembers', and poor Dad who arrived pretty quickly too.

The ambulance staff were amazing, very kind and gentle - and once at A&E they waited with me as Mum was ushered urgently through the door.  I had managed to call work in the ambulance and let them know I wasn't coming back and that I didn't really know what was going on but it was serious, but up until that moment in Broadway Radiology I assumed I had a sinus infection gone wrong and that I'd be back at work to finish the day as I had been for the last 7 weeks.  Nicci arrived shortly after Mum, and brought her two beautiful children which were a wonderful distraction in slightly stressful times.

The Registrar arrived promptly and put me through a series of tests and observations - I'm not stupid and gathered immediately they were testing me for stroke symptoms so I kinda figured it was a pretty big deal.  The prognosis was pretty urgent - the team at Broadway Radiology had notified the neurosurgeons in Wellington before they had broken the news to me, so it was a case of awaiting their decision although talk was made of a chopper ride down that afternoon for surgery.

Thankfully the call was made to the team in Palmerston North and I was started on steroids to reduce the swelling in my brain and I was admitted for the night with plans for an MRI in the morning.  Hospital stay is average... the staff were amazing even though I was woken 2 hourly in the night to make sure I was still remembering who and where I was and that I hadn't had a stroke - nurses truly do not get paid enough - in my whole stay in both hospitals I NEVER got a bad one!

The scan next morning(Friday 26/8/11) brought some excellent tranquilizing drugs and I actually have to say I enjoyed the experience... go the IV Hypnoval!  The same Radiologist from the Broadway practice came to oversee it, and was just as wonderful as the day before - he took Tim in to show him what they found and described what he assumed it could be - a Glioblastoma Multiforme - and what the next plan of attack could be which was reassuring for both of us.

The next plan was waiting for transfer to Wellington to the Neurosurgical team which happened on Sunday afternoon, and within the few days in Palmerston North I was inundated with visitors and the positive spirits and attitudes were amazing.  I felt ridiculously healthy to have a tumor inside my head, and had no evidence of a headache (due to the steroids I'd imagine) for the entire time.

 Transfer to Wellington was via St John Ambulance - one volunteer and the paramedic was working overtime just so they could get me down there... again another service that deserves recognition.  This was a much shorter trip than I had expected and I know that Tim was a bit disappointed he didn't get his chopper or fixed-wing ride, but we got there safe and sound and in time for dinner!

 Within an hour of arriving in Wellington we were met by a Neurological Consultant by the name of Tim Killeen who arrived with his ipad and showed us the scans (which brought it home for me why the medical team were in a panic in Palmerston North) and outlined what their plan could be.  He was very informative and explained with no stress and no bullshit about whether we were dealing with a problem, or a major problem.  He explained that I was approximately two weeks out from having a stroke which would have had definite neurological deficits attached, but he also said that if any brain tumor was lucky to have, the position and the 'lobe' it was in was the best place to have it - in terms of surgery access. This put is at ease somewhat, and we were informed that surgery would probably be Tuesday, but the Surgeon would be around in the morning to discuss it further.

Monday morning rounds were an eye opener - the surgeon was a human precision instrument - Calvin Klein from head to toe, with his consultants and minions falling over themselves to be in his presence - very young - although I've never met a neurosurgeon before so I'm not sure what I was expecting... I'm also told he drives a motorbike! http://www.healthpoint.co.nz/default,70603.sm;jsessionid=7B760786C970468503B6316252EF5695?service=70499

He delayed my surgery by a day to conduct a 'stealth' scan - a fancy MRI to plot image guidance for surgery... his concern was because of my being left-handed and the tumor being on the right side of my brain that he didn't want to affect my motor function by removing too much or poking around more than necessary - he explained that it would be during surgery when they decided how much of the tumor they could safely remove, weighed up against me waking up still me... as the right frontal lobe affects mood, memory and personality - and of course my left handedness.  So that afternoon my head was shaved in patches and some foam 'fiducials' (tap-washer things) were added to my head in order to act as markers in the scan and surgery.  I braved the public cafe that afternoon to have some non-hospital time with my amazing family - the surreality of the situation was evident for each of us... nobody could believe it, but we remained positive and upbeat, just wanting to get the 'job' of surgery over and done and that would be the big problem out of the way.

 MRI Tuesday afternoon was no big deal - very quick - and Tim was getting very good at rubbing my feet and being a goof at the end of the table to take my mind off the tiny noisy tube I was thrust inside.  Then it was a waiting game... I got to see Toby, our 6 year old, who had come down for the day when we got news the surgery had been delayed it was a great opportunity to have a day with Mum and Dad as we weren't sure how long after surgery we'd be able to see him... with my bandages and potential bruising I didn't want to frighten him by bringing him back too soon after surgery.

Surgery day was a blur, up at 6 and last medications - into theatre gown and met the Anaesthetist before we went down to theatre.  Saying goodbye to my family was the hardest part, as was the painful first syringe of anaesthetic - think my line was a bit blocked - but I was out before it was fully administered thank goodness.  I woke up peacefully - a huge fear of mine was waking up in a panic with tubes in my throat - thankful again that this did not happen.  the recovery nurses were wonderful and I felt fantastic on that afternoon - even managing a thumbs up for a photo, and a glimpse of the surgeon as he came to visit later in the afternoon.  The surgery itself went well he said, they were able to get 90% of the tumor which he was very happy with - and so were we.  I was fine, seeing, hearing, talking and in very little pain so was relieved that the hard part was over.

Thursday was the WORST day... the euphoric medication they had filled me with the day before had well and truly worn off, the right side of my face had blown up and I could no longer open my eye... the pressure bandage was just that and all I wanted to do was sleep.  I don't remember too much pain but the swelling definitely unnerved me and cold flannels and witch hazel compresses were the order of the day.
 It was an excellent opportunity for my Tim, Mum and Dad to get in some long-lost practice of spoon feeding me as I lay flat - it's been a while since any of them have fed a baby!

  Thursday was also the day that the Physio tried to get me up and out of bed... I managed to walk slowly to the bathroom, took one look at my face in the mirror and promptly fainted... needless to say I was back to bed for the rest of the day.  I think I wasn't prepared for the sight of my face, and it gave me a big fright - I'm such a big baby!

Friday was post-op MRI day - I was wheeled everywhere in the bed due to my previous wobbly day, but was feeling much better and my eye was beginning to open which was a comfort - and better for the balance. That afternoon my wonderful Mummy and my nurse Emily got me up and about 'her way' and not the way the physio tried the day before, which was much more successful and greatly appreciated by myself not to be rushed!  Toby came down for the day again to see me - he laughed nervously at my black eyes and told me I needed to stop playing so much rugby.  It was a relief to see him as I knew he'd have been processing it all in his own way, but for him to see that I was up and about, and still Mummy made me feel at ease.

The weekend was spent killing time, removing bandages and dressings one by one, and receiving visitors which we were not short of - again - truly grateful for my support network and the people that came out of the woodwork to check up on me... it was amazingly humbling and uplifting.    Noises were made amongst the medical team about transferring me back to Palmerston North Hospital for a few days come the Monday, but after assessment from Tim the Physio, Tim the Occupational Therapist, Tim the Neurological Consultant and Tim (the fiancee... obviously a popular name in that generation?!) the decision was made to discharge me into the care of my family and we were allowed to head home into the big wide world.

  I was very conscious that my Tim was in need of a big rest, having been my rock and spending every night bar one (Mum muscled him out to swap for a night so he could actually go and sleep in a bed) by my side in random chairs the hospital could conjure up, so was relieved not to have to transfer to our home town but back to a hospital.  I have since decided that if I ever come into some money I will be donating lazy boys to hospital wards for sure! 

The trip home was a ginger one - I was fine but Tim was driving and clearly nervous about his cargo... the sun was shining and after nearly 11 days in hospital I was happy to bask in the sun and snooze and begin to feel semi normal again.  Mum had prepared a delicious welcome home meal, and we had some friends to visit and join us for the meal also.  We opted to stay the night with the family, taking Toby to school and returning home the next morning.

Home was surreal... I didn't particularly want to be there but I didn't know where I wanted to be... I had the overwhelming urge to be doing something but was aware that I wasn't allowed to drive and didn't know where I wanted to go anyway.  I think that because I went from 'go to whoa' in a few short hours 11 days previous, I needed to remember that I was still a patient although I was home, and to rest up which didn't come easy.  I was pleased to see all my animals were well and happy, thankful for the farming neighbours that stepped in to feed and tend to them while we were away.

Aside from these tangible areas in our previous life, we were very aware that our old 'normal' had disappeared, and we had to set about finding a new one...

1 comment:

  1. Hi Wendy - beautifully written. Keep them coming lovey!!!

    Jess xox

    ReplyDelete