Frustration continues! & a little bit of rambling (ok a lot)

You know there really is nothing like just being another number in the que .. if only we didn't have to rely on so many middle men and referrals!

Why this feeling? .... Well upon leaving hospital after the removal of my tumour the surgeon instructed for an MRI to be done 6 months from surgery (which coincidentally is today) .... Since I still hadn't received an appointment, so I ring Fulford Radiology who inform me that they received the referral from my local specialist in May instructing the appointment to be in ... October .. 6 months after I last saw him in April for a pointless $80 - 5 minute appointment.  Not sure why he has done this I ring the local specialist asking if we can revise that back to the instruction of the surgeon and get an MRI booked in .... reply was 'oh I'm sure he knows best, but I'll mention it to him' .. (yes you will & if needed i'll send you a copy of the post op report instructing a MRI in July or even August but not October!) .. 'lovely, much appreciated' is all I can say.  It may be a simple error sure and we are all human, it just not nice to be the number in the que when its dealing with your brain, your body and your emotions.  All in all though 6 months down the track and i'm feeling average, school holidays have been taxing but everyday is still a blessing.  The renovations are 90% there and i'm a very lucky lady having just been to Rarotonga with friends for their wedding.

If there is one thing that sticks with me through this journey is that you need to keep onto the system to ensure it is working for you, you just can't leave it in the hands of the professionals because a lot of the time to them you are just a number and an income.  

It is amazing to me just how it works, today i've noticed that:

- a lot of adults go through some rather major experiences but seem to be viewed upon as hush hush in many cases or expectation/amazement that 'they are coping so well' (on the exterior at least), 

- there are a lot of children who face tremendous issues, where only a select few are there to support the family,

- Then there are the children and adults who end up on the front line of 'media and awareness' pulling support from a further field . maybe due to someone standing up for them or their position in society.

My wish would be that everyone facing such challenges had the support of a large group - big call and unrealistic sure - but imagine just how support like that feels and what positive outcomes it is able to achieve.  Also imagine those who are left to struggle/manage alone, yes some people may prefer this but overall the results and recovery are reflective of the support one receives on their journey.

  It all reminds me of local communities of yesteryear,  lately i've been talking to my grandparents about how life was.  The simple life, I guess you could call it.  Where veggies grew in the back garden - you knew your neighbours on first name basis, if you had extra or someone needed help it was all spread around as people worked together, local halls were busy most weekends and volunteers where everywhere in large supply.  Don't get me wrong evolution has got its good points but the change has also removed some community spirit and general hands on support and face to face communication.  

Its like what real use is there of social media / the internet and is it a positive / negative influence? I know it sure does help you to gain knowledge at a quicker pace but is that needed, used wisely or does it set people up for failure.  When it comes to how many 'likes or comments' on a post do we now have expectation that people will reply to fuel the fire needed to keep our passion alive or is it a meaningless waste of energy and resources leaving us feel unappreciated for our time and efforts.  

I get caught between the want for a simple life and the needs of a complex one all the time.  I believe that motherhood has done this to me, I want our children to grow up with simple values, respect for elders and knowledge to set them up for life.  But then when I look around my home, their school and the wider community I find it filled with meaningless junk.  The type of junk that compounds and then ten steps later your standing there wondering what happened.  It puts me in standstill mode, one minute I think the solution is to get rid of it all - back to basics, but then the expectations of society creep in.  

Its a big pondering of mine - just what is the world going to look like when our children are adults and are we doing them justice to prepare?  Have you noticed just how happy they are with the unknown - playing today purely for what gifts today brings, its society and advertising which teaches them (more often then not) about the needs that come of wanting the latest gadget or toy.  However after the money is spent, that item is bought home, its generally tossed aside so they can play in the mud - just as I did as a child which goes to show that nothing much changes at all huh! The cycle is the same - yet each generation has a generalisation of wanting to provide more for their children then what was provided for them.  I'm yet to meet a parent who raves about each moment of childhood and wants to repeat that experience directly for their children.

Have we walked away from overall simple values and communities or have we just forgotten them caught up in the world as it is today, everyone wants to be bigger and better then what was before them - but it is these pressures that put us in an unhealthy position. Maybe that's what happened to simplicity - why spend time 'you don't have' growing vegetables when you can pay someone else to via a shop?  or stopping in to check on your neighbour when you have so much work to do ... oh if only I had the time for that .. right ....

Life on the outside - then admitted again (Part 5 to present)

So you think your felling well enough to start making the trip home? was the deciding question .. I responded with a confident Yes! ... knowing that it costs $$ in hospital and I was just dreaming of sleeping without observations check-ups and with hubby & family closer.  But little did I know how much had changed.

Its one thing to have just adjusted to the outcome of surgery in the safety of hospital - where everyone knows what has happened without you having to explain it, where they don't look at you with 'sad poor you - lucky i'm not having to deal with that' eyes and there is no judgemental looks.  But to walk outside where the ground is uneven and each thing you used to do without ease is now a challenge in its self.  We had planned to stop at Hamilton on the way home which would break the journey and give us a night to adjust to no nursing staff and still have quietness of no kids.  What a night it was! I started to appreciate all hospital had to offer - a bed that moved instead of having to juggle 10 pillows and still not be comfortable - drugs on hand - specialised people who could help justify the pain, monitor the temperature of my room and support me through the emotions.  This life on the outside just became a challenge in itself.  But I was fortunate to have hubby there and go through the challenge together (although I'm not sure I was very good company while either complaining of pain or sleeping while he just kept on watching sky lol)

We ended up staying in Hamilton for two nights as really I was in no state to travel so when we did finally travel home - slowly - seems Marks a very careful driver when he needs to be huh!

Was great to finally get home though, so much had changed on our renovation with Mum and Dad in charge for the week, windows in and paint on the place was looking great!  the kids were pleased to see us too as School and Preschool had started up again while we were away, so it was busy times getting used to routine.    First night was about finding the right pillows to get comfy and try to explain to the kids at 2 am that mum wont be coming to see them as she needs to sleep.

Next day Mum and Dad took off and super hubby kicked in - sorting the kids and head on into the renos, stopping now and then to see if I needed anything from my designated lazy boy.  Days came and went painkiller after painkiller taken, renos continued and the kids got used to the 'recovering mum'.  We were so fortunate with food pouring in from very lovely people in our community   But then came the day when I started leaking fluid from my ear - not good.  A quick ring to my surgeon has a prescription at our local pharmacy & an appointment booked for the next day at the local specialist to confirm it is CSF Fluid leaking.    that night i slept with a towel under my head which was drenched in the morning - I had no idea how much you could ' leak'.  That day it was off to town with a friend to get my original head stitches out, but also also contemplating a second surgery.  I'm grateful to the friends that showed up that morning with loads of moral support - this really was the last news I wanted to hear.  The 'leaking' seemed to slow during the day and stopped that night so i slept in a chair for chances that my body could over come this by itself if I gave it time.  My mum had raced back up to keep the kids taken care of if we had to take off to Auckland again in a hurry.

Turns out the leak was too much for my body and surgery was inevitable.  We headed up to Auckland on Valentines Day after a night of the most immense intense pain I have ever felt, as fluid got so low my brain wasn't floating any longer.  Admitted into the public hospital this time - oh how different that experience was!  More sleeping tablets to take - lovely gown to wear - Medical staff to talk to sometimes in a dopey state!

The morning of the 15th came - Mark was only just allowed in before I was wheeled out to Pre-Op.

HERE WE GO AGAIN! ... a familiar face of the surgeon came to great me, forms filled out & see you later cuddles to Mark as tears started to flow, thoughts of the immediate recovery from a few weeks ago Hamish must have seen the thoughts on my face as the next words said is ' it'll be a walk in the park compared to last time'.  Wheeled into theatre, IV's put in, move here, do that - give surgeon hubby's cell number  then finally start to count back from 10.

2 hours later I'm back with it! . Hungry as anything but still many checks going on and procedures to follow, back to the ward & into isolation as I have been in a different hospital for the last surgery and could be carrying bugs - funny it was 12 hours after I was first admitted though!  finally at 12.30 pm  I was allowed ice cream and jelly :D  Recovery was easier this round, apart from the ticking clock! .. silver linings on losing all hearing from my left, and lovely plastic hospital pillows now meant that I could 'block' this out as soon as I lay down.  Not many more drama's and after one more night I'm cleared to head home! WOO HOO.  Its amazing how prepared one can be for the second time travelling 5 hours home - by car - after brain surgery, it was a much easier trip and was great to get home to my sister & the kids.

All that 2nd load of drama was just 3 months ago today .. thats right 12 weeks since my last major surgery and over all i'm feeling great - its been a whorl wind and there are still some very challenging days, but i'm pleased to say recovery has gone well, I can not thank those friends and family who have been here supporting me through the low times enough :D

I'm very lucky! to go through something like this sure is life changing - all of a sudden you begin to realise you really are stronger then you think, and you really don;t know what may be around the corner and nothing is more important then living the life you dream before its to late and never underestimate what you and your body are capable of  one day i hope to regain some hearing on my left with a aid of some type but at the moment i'm just content with most of my original symptoms reduced or gone as I wait for another MRI in June/July to check just what's happening in behind the scars - lets not think about that to much right now though.

Time for everyone to count their blessings x i'm sure when we really start to reflect we have more then we like to admit.

Me .. at the moment I'm just so blessed I can still smile and see the joy in all.

Nite!
xx Sam
(photo taken soon after surgery two by my 6 year old <3 )

Brain surgery ... been there done that! (Part 4)

So today is ANZAC day, instead of attending a service I can be found on the couch as is a challenging day and recovery comes first. Waking with head pain has been a common occurrence since surgery, but today it has come with the feeling of sorrow for those who lost their lives in the war and sadness to hear of a friend who has passed away last night, and sobering realisation is how lucky I am and have been during this chapter of my life.

Today also marks 3 months since I had a tumour removed from my brain, although I can recall it like it was yesterday .....

This is my MRI of the tumour:

Let me introduce you - it is the white area, commonly known as an acoustic neuroma - excuse the images they are photos of the screen, i'll make them better one day.  

Looking at these still stops my thoughts and stars me counting my lucky stars, to be shown this is your head sure is enough to do that.

A nice slow trip up to Hamilton for the night before to break the trip, after coffee with a beautiful friend at the local cafe - a nerve calmer and emotion filler.  But saying bye to the girls was the hardest - not knowing what I would be like when we saw them next.  

We arrived, settled into the motel, then walked down to a restaurant for dinner, kid free when I felt like all I wanted was my kids and family the most - it was an rare feeling as normally this type of opportunity would be jumped upon.  Mark started his addiction to the discovery channel and before I knew it was Thursday, time to head to Auckland got some last minute shopping then checked Mark into his hotel and me into hospital.

The only time I had been in hospital was when Emma was born, so this was quite a different experience, admitted began the start of observations and a catch up with my reassuring surgeon and anesthetist talking through what is to happen in the morning and how surgery is expected to go.  They left us with a 4 page detailed FYI handout with what to expect after surgery etc.  I felt like I was studying for an exam and could have told you anyone of the facts on it. Before they left I was also 'marked' ... no mistaking where the pesky tumour was now all mapped out.

That night we skyped the girls, got used to hospital food and watched more discovery, after I fell asleep Mark left but when I woke alone all the anxiety of what as to come completely over flooded my emotions and I was a mess - thankful to caring nurses and sleeping tablets! next thing I know its 6 am and I'm woken for a shower, stockings on, pre-op meds given tucked back into bed then wheeled down to pre-op it all happened in a flash.

I remember thinking it sure does take a team of people to run this place - no sooner are you introduced to one person and three more walk in, they all know their jobs and before I know it there are two iv's are in my right arm and I can hardly remember going to theatre and moving myself onto the operating table.

Between 7 & 8 hours later and I'm hearing lots of sounds in recovery, people calling my name, telling me to let go of their hand so they can give me more nausea and pain drugs, being in & out of conciousness then moved to ICU with numerous lines and cables attached.  They wouldn't let Mark in until I settled down and become stable, but man it was a relief when he walked in :)  It was an odd time, when I could have swan that there was plastic in my mouth as half my feeling was gone, machines were beeping and buzzing made the nurses come running, I had a splint attached to stop me moving my arterial  my finger went numb with the attached 'clothes peg' and the next 12 hours we full of being woken for observations, tears, tiredness - all part of major recovery.  I've never been completely helpless like I was during that time and I will never be able to thank the nurses enough for their support and help to get me through.  Its amazing just what the body can handle and it wasn't until the next day when the surgeon came in and lines started to be removed that started to feel I could get through this,  however the look on his face when he gave a brief description of a very tricky operation was a new one and I did manage to get breakfast yoghurt everywhere bar my mouth man I was hungry! - its the simple things you really do take for granted at times.

Mark arrived looking clean and fresh - my knight in a bright red Holden top :) ... sure was great to see him, I was wheeled back to the ward - assisted to have a shower then it was back to bed.  The day seemed to be going slowly, then there was a big parcel delivered from the amazing people at Okato Playcentre - what a surprise! I was a very spoilt lady and full of tears, missing home, everyone and everything but reassured that I was in the best place.  Mark unwrapped and showed me the special items - it was magic.

 I wasn't able to do much only the odd assisted walk around the ward as the world was spinning & Mark would seldom change sky channel, but basically the day was spent just waiting for my next lot of pain medications, observations and sleeping.  When I closed my eyes it was like I was back in the operation, I could hear machines and the drill - lucky this didn't last all that long.  Next few days were spent the same - surgeon and anesthetist popping in to check on progress and now full of positivity, nurses checking ob's and meal times arriving with the odd skype call to the girls and one set of visitors.   Swelling got really bad at one point it really did look like I had taken a hit to the side of my face but at least the drugs took the edge off the pain with emotions running very high and the depth of just what I was dealing with beginning to hit me.  Then came the day when the bandage was removed and the nurse washed my hair - I felt half human again and finally could see the incision via a photo. 

Now I was beginning to become aware just how much single side deafness was affecting me, its an odd moment when you realise you can't hear a thing when your 'good' ear is against the pillow.  Or when you cry and tears only flow from one eye, I was so fortunate that my facial nerve was speared - there is definite weakness but all signs point to it improving.  I'm so lucky to have Mark beside me through all of this although not many words were spoken I knew just how strong the bond was of being there for each other. Little did I know how the challenge had really just begun.

The surgeon warned me that although I had come so far life back on the outside would be a challenge and boy oh boy was he right! but I'll save that for part 5 ...

Decision done, funds found - count down on - Part 3

and so the process continues:

Tuesday 8th of January I had a CT scan at 8am it was a walk in the park - the hardest part was being there solo.  This is the moment that I knew I needed to stop being so strong and holding people at arms length, when people offer to help I need to be more accepting. My number one priority is to start looking after myself to get through this journey in the best position I can, but frustration and uncertainty challenge me at every step.  It so easy to get stuck in the 'what if' mind frame, then the 'why me' and 'its not fair' thoughts flood my mind and uncontrollable tears fall relentlessly every single time I'm alone.  I've been an over thinker of situations and life for a while now, creating big unknown knots of anxiety and fear in my body - but this is the moment where I break free.  I am so fortunate to have two fantastic amazing women in my life who could also see through the strong fake front I had up, they allowed me to let go in the safety of tremendous support - just what I needed to become grounded again the conversations over coffee and wine were much more then how are you today and I'm so thankful.  It made me realise that sometimes all you need to do is talk, as they say a problem shared is a problem halved.

With the operation just around the corner on the 25th January and being in the middle of a large renovation I had so much to achieve before then, fatigue was my biggest issue but I knew what I wanted to achieve before the 'recovery' phase came and I would not be doing much at all.  So I made a list of the smaller things getting to me, the bigger things needed for the renovation and booked in a family portrait sitting as well as getting my hair and make up done beforehand.  This was meant to be a goal after getting fitter but with possible facial paralysis after the operation we made a decision to do it now. 

 I was lucky my lovely friend put me onto Tammie Pittwood Photography  - AMAZING, Tammie was a joy to work with and so lovely and understanding of the situation.  I'm so pleased with the photos they are beautiful and I can not wait to get some up on our wall.  Here are two of my favourites :)

This whole journey has me rethink about so much - what's important to me and what values I hold for my family. Most importantly is there something I can do to protect my children from this happening to them? ... from the bone positions this tumour has been here and growing for a large portion of my life which is quite a scary thought but somehow I find reassurance in believing its happened to me for a reason, a reason that I don't have to find or justify just accept. The last thing I want is a big 'Taboo' around talking about the tumour in my rural community and with my children, I plan to stay open to questions and help support anyone else who may find themselves in a similar position.

Please everyone treasure your own amazing beautiful families & life around you. I know its cliche, but you never know when something major will challenge you and change the life you once knew - above your control - there is no looking back xxx

Time for a re-think while I breath - Part 2

So here I am - feeling emotional to the extreme, unsure of myself and unsure of the position I've found myself in.  Starting to confide in my friends but feeling so alone was hard.  There were some amazing people who without knowing just how much they did got me through this time, I also added a few new coping tools to my tool box which turned out invaluable and put me in a better place to deal with the news that came next.

Exerts from my journal:16th Nov - MRI day ... 40 minute MRI with contrast added half way through, 8 scans preformed. Side affects: feeling terrible like hungover but with a full and heavy tired head. 3 days later results to be at GP. GP nurse rang to ensure i had an appointment with specialist - this confirmed my thoughts on findings, so i asked for MRI results copied to me ... after reading i learnt of confirmed tumour 2.5 + cm. Saw specialist 3 Dec, explained Tumour - due to size and placement it is pressing into my brain-stem and surgery likely. My case is referred to a specialist in Auckland who will preform surgery and remove tumour, possible that removal of the tumour will reduce tinnitus and remove any hearing from the left ear (which I'm keen to preserve what is left!). So currently researching my options and possible outcomes, but hoping to get there with closer support. Community and friends showing so much support which is amazing, but am feeling anxious and fearful of the procedure. Noticing lots of dizziness and vertigo, dyslexia, memory loss, balance disruption coinciding with hitting the odd door frame or wall and overall overwhelm of jobs to be done v's tiredness and lack of motivation.

This sure is a place I didn't see myself being so young, not even 30!, I'm a mum to two girls 5 & 3 years old and its frightening for them as well to see mum in tears so much.  But I sure hope quality of life is better after surgery.  I'm exhausted - finally stopping to let diagnosis set in and to aid my body better. I called my specialist regarding the referral as i hadn't heard anything and within 2 opening hours max (waiting for Dr to come back in clinic) i was called with an appointment for Tuesday afternoon 13th Dec 2012. So I'm looking forward to this next step - noticing tiredness, dizziness and confusion more along with being very emotional of course. I'm starting a list of questions and keeping positive but its still a big shock and i find dealing with telling people the most draining - like a record on repeat, but i'm not one to keep everything to myself especially when it is this big ... I will get there though so long as i remember to breath.13th Dec after appointment - surgery booked! ... going private over 45K but hope insurance will help out, I'd rather sort this tumour out and I'm not finding many other options within NZ health care, feeling it is failing me .. if i went public there is no promise of a date and hearing stories of people who get bumped then rushed to A&E - really want to avoid that!

My life is now in change mode - I've had to give up Kidstart and it hurts to be incompetent of a job i love. I have to step back from Playcentre, where we have babies due this month which i wont be there to see - i feel like the smelly kid and as much as people want to help its not like i can say great! please can you cook dinner tonight, make them stop yelling as the noise is unbearable or clean my toilet today, even please help me get my kids up and ready for school. I just have to stop breath and get on with it - i may be 'sick' with a big health scare after trying my hardest to live the 'clean life' to avoid tumours and ill health but i just have to remember i still have responsibilities which i can't just walk away from.

So on the 25th Jan I'll be having it removed in Auckland .. so far private hospital and food look great menu sounds yum, hope i get a room with a view! lol ... on a serious note though after the trip to Auckland to meet and chat with Dr i found him really positive and had a few impressive stats on history of AN surgery + he offered me an opportunity to chat with past patients - one which i have found on line who had a baby one year after her surgery - exactly! I will lose all hearing on my left, have possible balance & dizziness issues and may be left with some facial paralysis but i will be alive - still breathing and able to eventually be the mum i want to be again - soon I hope xx

a start to the chapter that made me stop ... Part 1

So here I am, just over 5 weeks after brain surgery - bare with me as the journey has had some low points and I'm sure there may be a few more to come.  Not everyone will know my story yet, its not something I saw coming but its certainly become reality and has made me re-evaluate things.

So what's the most important thing I'd like you to read and think about - YOUR HEALTH ...  never stop looking for an answer if you feel something isn't right or if you have a symptom to suggest that you should stop and listen - doing this may have just saved my life.

This chapter started back in 2010, but I only started taking reign and writing it in 2012.  My first inkling that something was wrong came a few months after a beautiful natural home water birth of my second child, all of a sudden I was unable to use my left ear on the telephone and there was a ringing that came and went in the ear.  I mentioned it to the doctor who sent me for an audio-gram, I felt the testing was unreliable with my kids in the room, tester not all that pleasant or supportive and it showed some loss as expected - but that was as far as it went.  

During the start of 2012 when reading an advert for a hearing clinic I choose to take more action and have a second audio-gram done.  This time at a new place I found the staff supportive, I had also focused more time on me rather then being the mum of a new born and I was in a better place to hear the results and the recommendation to see a specialist.  The day came around, the money was found, and I went alone to another appointment.  This time recommendation was an MRI - and was what made me stop.  

How was a healthy person like me - ok a bit over weight which was not exactly new, I had no other symptoms to ring alarm bells, just felt I was one of the unlucky ones who's hearing had been affected by a virus or too many loud sounds - maybe all those times I was told to turn the walk-man down.  Then I heard the ENT mention 'rare tumour' .. nothing to worry about though just a precaution as we want to know why your hearing is abnormal.

As I sat and waited to be picked up from that appointment my worry was more about an MRI I mean the thought of a tumour was daunting but I'm healthy and its RARE - slim chance I'd be affected with something that feels like a life sentence.  But who wants to be tested in a big machine you know nothing about with contrast injected - that was daunting.

3 months later & still no sign of the MRI appointment but I was starting to wake seeing stars, with attached headaches turning into migraines .... knowing this wasn't right I sought out an appointment with my eye specialist due to a trauma cataract growing, osteopath for a 'body check' and called the ENT specialist to ask that the MRI get moved to urgent - concern was setting in.  The quick reply was no take voltaren, and come in to have a grommet inserted it may help - no guarantees.  It took a day or two until I decided to get a second opinion, tears shed until I managed to get a referral to another ENT.  This time I was sent for bloods to check something else and told that the MRI shouldn't be far away and to wait reassurance that a tumour is rare and that if it is a tumour I'm still in my 20's and that the diagnosis would probably be another MRI to check growth rate.

Again I was reassured everything was precautionary and there is no need to worry so I just focused on keeping a positive attitude.

I'm Back ...

Long time no posts here :) 

... but the update is life has had a few curve balls lately we've started on great renovations and now I've been diagnosed with a Tumour in my brain that needs removing.  Trying my hardest to stay positive but its not working all that well so have come on here to record my journey 

(and finish the 30 posts about me ;) )

Post soon .. seems its lunch time and Beca is VERY hungry xx