My First Birthday

Personal stories from survivors
stacy
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Joined: Mon Sep 15, 2008 11:43 am
Location: Elands NSW

My First Birthday

Post by stacy » Fri Aug 28, 2009 11:57 am

Hi All,
Tomorrow is my first birthday, and also my 9 year olds B day.1 year ago i had my first craniotamy what was to be a simple op to remove a menengioma, well that wasnt to be. I was diagnosed with a grade 2 oligoastrocytoma and my then neuro didnt want to proceed with removal, so I found a new one who removed 100% in Jan 09, I felt great then 3 weeks later I was flown by Air Ambulance back to Sydney after developing a bone flap infection and also scarring of the Dura. I have been waiting for surgery to reconstruct my skull ( as I have a large hole) and have a Dura patch inserted which was cancelled 2 times due to swine flu. I have had 6 hospital stays due to severe pain, bucket loads of pain killers but im hanging in there. My neuro rang and told me he has a op date for 28th September (YIPEE).My family is suffering so bad, my 19 year old is having counselling, my 18 year old is just plain angry, 15 year old dosent say anything and my youngest daugter looks at me like its the last time she will ever see me when she goes to school and my hubby is in denial and thinks everything will be ok and i am just riding that daily rollercoaster but trying to remain positive which is darn hard. I booked a family cruise for next year so I have something to look forward to but otherwise im coping as well as can be and thank god for everyday I have.
Finding this forum was a god send otherwise im sure i would have gone completely bonkers.
Stacy

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kenobewan
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Location: Australia

Post by kenobewan » Fri Aug 28, 2009 4:31 pm

Happy First Birthday

Congratulations! Also glad that you have an operation date at last :).

Well you have been through a lot. My daughter is too young to understand, so I haven't shared your problems there. I hope that the cruise enables you all to reconnect.

I think that you are right, in that we all have things to be thankful for. Hopefully, everyone will settle down over time. Stay positive :).

Morpheus
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Location: Sydney, Australia

Post by Morpheus » Sat Aug 29, 2009 1:45 pm

Nice to read "birthday post". Congrats!

Kristalee
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Post by Kristalee » Sat Aug 29, 2009 11:22 pm

Hi Stacy! Congrats on your first year! What a year it has been for you! I had no idea you still havent had your surgery to fix your bone-flap :(.
I feel for you children, I don't know how id cope if my mom where in your shoes. I hope the doctors are at least giving them hope that they will have their mom around for years to come :)
Krista

stacy
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Joined: Mon Sep 15, 2008 11:43 am
Location: Elands NSW

thanks

Post by stacy » Wed Sep 02, 2009 1:23 pm

Hi All,
Thanks for all the congrats, Im feeling extremely well past few weeks maybe the change in meds i had after my last hospital stint and some well deserved gardening as the weather is glorious, I do believe I am now a SURVIVOR and plan to stay that way!

Stacy

Warrior
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Post by Warrior » Sun Sep 13, 2009 7:34 pm

Hi Stacy,

You mentioned in your other post that you had an awake surgery last January, just wondering what you think? Was the speech therapist asking you questions during the procedure?

stacy
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Posts: 138
Joined: Mon Sep 15, 2008 11:43 am
Location: Elands NSW

awake

Post by stacy » Mon Sep 14, 2009 1:24 pm

Hi Warrior,
I too was asking questions about awake craniotamy which I didnt end up having, I ended up having craniotamy under MRI which i was asleep for, sorry cant help you there. I have watched a few ops on u tube so take a look not to gastley!
Regards Stacy aka warrior woman

stacy
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Posts: 138
Joined: Mon Sep 15, 2008 11:43 am
Location: Elands NSW

the countdown

Post by stacy » Mon Sep 21, 2009 11:03 am

Hi All,
Well the count down is on for my surgery, I will be having my op at RPA next Monday 28th, pinkies crossed that it dosent get cancelled again, I will let you all know how Im doing as there is a computer just outside the neuro ward.
Stacy

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kenobewan
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Post by kenobewan » Mon Sep 21, 2009 1:00 pm

Best of luck for your op! Who knows we may see you on RPA (TV show) ;).

Hope that it doesn't get rescheduled and looking forward to updates :).

stacy
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Joined: Mon Sep 15, 2008 11:43 am
Location: Elands NSW

cancellations

Post by stacy » Wed Sep 30, 2009 12:14 am

I was in near shock when I got the phone call on Sunday night 10 hours before my op, the hospital rang to inform me that my op had been cancelled for the third time, I couldnt believe what I was hearing, apparently there was a number of serious car accidents with head trauma and all the neuros were operateing madly on the Monday,MY DAY! WE were all packed ready to leave for Sydney, had accomodation booked and paid for, flew my brother down from QLD to look after my farm, my daughter took a week off work to watch my 9 yr old and spent a fortune on frozen TV dinners so my boys wouldnt burn the house down.I cant get a refund from hotel as this was the third time I have cancelled , cant blame them really, but what really cheezes me off is that I rang the secretary and demanded to know when my op was on and all she could say was be ready! I thought i was, dont these doctors realise that its not so easy for country patients we dont just live around the corner!!!

Stacy

montaldi
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Post by montaldi » Thu Oct 01, 2009 8:53 am

Oh Stacy, I am so sorry! That's horrible. I'm hoping that you get your operation ASAP, at least sometime this week so that all your plans aren't thrown out the window. Here's hoping for a piece of good news your way!

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kenobewan
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Post by kenobewan » Thu Oct 01, 2009 11:07 am

I see specialists in Sydney and that is where my next rounds of treatments will be. I must say though, they have no qualms about changing appts on a whim. Booking two specialists in one day has so far proved fruitless, one always cancels.

That is the one bad thing about treated in a place where you don't live. Stick with it though, its better to get the best treatment available. Do you know anyone in Sydney you can stay with to be ready and waiting when called?

This doesn't make it any less frustrating. Sometimes it feels like they want you to know whose in charge. Try and focus on the positive outcome once you have had the surgery. Hopefully then this will all seem like a distant memory. Keep smiling (even if you have to force it)!

stacy
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Posts: 138
Joined: Mon Sep 15, 2008 11:43 am
Location: Elands NSW

My op

Post by stacy » Sun Oct 04, 2009 3:31 pm

Seems I have to wait another 2 months or so for my op, havent got a date yet but im completely furious!!!!!!!!!
Stacy

stacy
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Posts: 138
Joined: Mon Sep 15, 2008 11:43 am
Location: Elands NSW

op

Post by stacy » Sat Oct 10, 2009 10:56 am

Hi Guys & Gals,
Well I received a phone call from my Neuro and my op is booked for the 26th Oct, surely they wont cancel a 4th time as I will lose my mind !!!!
Stacy

stacy
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Posts: 138
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Location: Elands NSW

Im Back

Post by stacy » Sun Nov 01, 2009 11:23 am

Im Back,
After my reconstructive surgery performed on monday the 26th Oct, spent 2 days in RPA Sydney and after clear Ct was able to leave hospital but spent 2 days just around the corner in hotel room just in case before the big drive home. I feel extremely well apart from the feeling of being hit head on by a truck and the neuro said everything went well, no sign of re-occurance of tumour but just need to wait as re-infection is high with this procedure,just taking it easy doing light housework but hanging to get out on that lawnmower!!
Stacy

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