Brain Tumour Survivor

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 Post subject: Off we go
PostPosted: Wed Mar 24, 2010 10:24 pm 
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Joined: Mon Sep 15, 2008 11:43 am
Posts: 138
Location: Elands NSW
Well the day has come for my LONG awaited holiday, my family and I are flying over to Lord Howe tomorow, bags are overloaded with fishing gear and too many clothes, I feel great and hope I stay that way, I do have the jitters about flying but doc says Ill be fine.Ill be thinking off you all while Im laying on that white sandy beach soaking up the sun!!!!! : :D :lol:
Stacy


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 Post subject:
PostPosted: Fri Mar 26, 2010 11:57 am 
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Joined: Mon Aug 17, 2009 12:43 pm
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Location: Sydney, Australia
Have a wonderful time!


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 Post subject: back from paradise
PostPosted: Wed Apr 07, 2010 4:00 pm 
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Location: Elands NSW
Hi Im Back,
Had a wonderful holiday at Lord Howe, My brain didnt explode on the plane, I managed to get some diving in, still no explosions, scenic boat trips and swimming with turtles and huge kingfish. Funnily enough I didnt have 1 headache the whole time I was there.Hope to see some of you Sydney siders at the brain tumour forum on the 5th May at the Menzies hotel, contact Julie Macdonald Forum co-ordinator 0283745683 to register and out of towners can have flights and accom paid for by cancer council but must register this week for placement.
Stacy


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 Post subject:
PostPosted: Wed Apr 14, 2010 10:11 am 
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Location: Sydney, Australia
Well, I wasn't going to go, but the bloody thing is five train stations away, and there are some good speakers (including my oncologist), so I'll be there at least in the morning. I'll be meeting Stacy, but it would also be great to meet others!


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 Post subject: comin to the big smoke
PostPosted: Wed Apr 21, 2010 11:02 pm 
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Joined: Mon Sep 15, 2008 11:43 am
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Location: Elands NSW
Hi Morpheus,
I received our plane tickets today, compliments of the cancer institute, Ill see you there. I hope to also meet up with more of you from the big smoke if you can make it. Brain Tumour Forum 5th May Menzies hotel opposite Wynyard Station 9.00 am - 4.30 pm lunch provided.
Stacy


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 Post subject:
PostPosted: Thu Apr 22, 2010 1:26 pm 
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Location: Sydney, Australia
Cool - I'll be catching the train ;-)


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 Post subject: MRI RESULTS
PostPosted: Sat Jun 12, 2010 2:55 pm 
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Joined: Mon Sep 15, 2008 11:43 am
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Location: Elands NSW
HI,
Just got back from sydney after having MRI.I was in a dizzy as my Neuro was looking at my scans for 20 mins then rang oncology,radiology to discuss them.It appears all is fine, MY neurologist changed my meds and took all pain killers away (Oxycontin 60 mg per day)So now Im climbing the walls with withdrawel symptoms EG wanting to rip off everyones head in the house,wanting to sleep all day but cant,drinking loads of coffee and smoking way to many fags!!!!

The CONCLUSION
NO definite evidence for recurrence. Very tiny focus of contrast enhancement, as descibed, not seen on all sequences and not associated with and FLAIR signal abnormality. This is of uncertain signficance,possibly related to the previous surgery, There is focal encephalomalacia beneath craniotamy site, there is also liner hypodensity overlying the cerebral parenchyma consistent with old blood products
BLAH BLAH BLAH

Stacy


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 Post subject:
PostPosted: Sat Jun 12, 2010 5:26 pm 
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Joined: Mon Mar 10, 2008 4:03 pm
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Location: Australia
Translation in plain english - you are fine. Good result :).

Very important though that you don't get stressed. Suggest phosphatidyl serine and walking to help with this. If you are finding it difficult to cope with the withdrawal please seek help.


Last edited by kenobewan on Sun Jun 13, 2010 10:53 pm, edited 1 time in total.

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 Post subject:
PostPosted: Sat Jun 12, 2010 6:00 pm 
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Joined: Mon Sep 15, 2008 11:43 am
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Location: Elands NSW
Thanks Ken,
I decided to cut down on the coffee and cigs as this was making me more aggitated, my hubby fixed my ride on today so a new day awaits as i can de-stress tommorow as i have 5 acres to mow. Yes the neurologist did also suggest to take a 2 hour walk everyday alone to clear my mind!!!!but early days as Ive only been off meds for 4 days,I now know how drug addicts must feel.
Regards Stacy

Anyway Ken how are you doing?


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 Post subject:
PostPosted: Sun Jun 13, 2010 5:03 pm 
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Location: Sydney, Australia
Well done Stacy! I can definitely relate to having weird, but good, MRI scans. I figure as long as the experts are happy, my scans can be a little eccentric. BTW Now that you mention that you smoke, I'm pretty sure I did see you outside the Menzies, so we kind of just passed each other.

I run each morning, and I notice a big difference when I don't. I suspect that it's more than just about keeping fit. My tumour was in my right parietal, and my bush doctor theory is that running (moving through space) stimulates that area (right pariental handles spacial issues.)

Who really knows, but I do know that my morning run helps me function better through the day.

And yes, Ken, how are you going?


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 Post subject:
PostPosted: Sun Jun 13, 2010 10:52 pm 
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Hi guys,

thanks for asking :). I don't know how it is for you both, but I find as I feel better I find I have to keep making adjustments.

As you know I continue to post research that I find useful. However my search for treatment has finished and I am happy with the choice we made in not seeking further treatment.

Up until recently I found myself pushing back against some people feeling I had to prove I could hold my own. I feel I have adjusted and let go of many things that weren't bringing me any benefit. I now don't feel I have to prove anything.

It was difficult for me to let go, but in this way I have found a new freedom. I work mainly from home. More freedom means doing more of what I enjoy. I have modified my diet even further. I no longer feel the responsibility of achieving anything - a pressure I put on myself.

So I feel more relaxed, my relationships with others have improved. I have realised that being nice isn't a sign of weakness or being false. I hope that it is just being me.

So as you can tell my worries have been more existential than health related. I still have cancer, but I have the freedom to be me :).


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 Post subject:
PostPosted: Tue Jun 15, 2010 4:04 pm 
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Joined: Mon Sep 15, 2008 11:43 am
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Location: Elands NSW
Ken,
You said it all in a nut shell!!!!I too have made peace with the enemy in my head, Im calming down now, no head ripping moments, still have the cramps and sweats but feel loads better today, I drove to town today 60kms and sang all the way which made me feel happy although I cant give up my day job for a new career!
Regards Stacy

OK Morpheus dob me in for being the only person sneaking a smoke outside a cancer seminar, Shame on me.


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 Post subject:
PostPosted: Fri Jun 25, 2010 9:25 am 
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Joined: Mon Sep 15, 2008 11:43 am
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Location: Elands NSW
My 20yr old daughter rang me the other day hysterical, Mum Im pregnant!Ok now Im 47 and starting to feel really old but that is on my list of dreams, to become a grandmother, pay my home loan & see my 9 year turn 18.I have detoxed off the pain meds really well and can actually read again without double vision & decided to do some part time work at my local Post office/general store/bottleshop. Things are looking brighter, Im rather happy now.
Stacy


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 Post subject:
PostPosted: Fri Jun 25, 2010 3:19 pm 
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Joined: Mon Mar 10, 2008 4:03 pm
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Location: Australia
Accidental Grandmother ;). Good news despite the unexpectedness - let's hope you see your great grandchildren :).

Great about the pain meds. One thing about this disease I can count myself lucky - no pain. Keep up the good work!


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 Post subject: second birthday
PostPosted: Tue Aug 31, 2010 11:43 pm 
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Joined: Mon Sep 15, 2008 11:43 am
Posts: 138
Location: Elands NSW
Hi Everyone,
Well its now been 2 yrs since i was diagnosed with a grade 2 Oligoastrocytoma, after 4 craniotamys, 1 brain infection, partiel skull reconstruction i can now say ive been to hell and back, I now have my pain under control which is a big bonus, I feel great, my rollercoaster ride is over for awhile, my family has settled back into life again & the fear is no longer in my childrens faces. I do know this will change at some point but for now Im blessed with life and appreciate every moment!!!!!!! God Bless you ALL.
CHEERS STACY


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