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

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