Thursday, March 7, 2013

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

Tuesday, March 5, 2013

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

Monday, March 4, 2013

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.