Brain Tumour Survivor

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PostPosted: Sat Oct 09, 2010 12:57 pm 
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Hi Alley, life is so unfair at times....been through my fair share as well, like others on this site. Hopefully the autopsy will reveal some reason. As for your girlfriend, you are there for each other. Support is all you can give. Can't believe what you are going through at the moment. Things just HAVE to get better. Sending you and Jus a big hug. You will come through this, you have already faced so much. It IS hard to stay positive just maybe try to focus on any little positives you see. That will bolster your spirit. It is really easy to concentrate on negatives (and I can well understand why) but every now and then the positives give your mind a break. As I said before, just be kind to yourselves. I think you said you have a son and I wonder how he is in all of this? As I said before, lean on your friends and family...that is what they are here for. Perhaps Jus's counsellor could provide you both with a sounding board. My friends who lost their daughter some years ago joined a group for parents who had lost children and found it helped enormously. Just to be with people who have gone through/are going through the same as yourselves, only they can truely appreciate where you have been and where you are. All of us can offer advice but unless we have walked in your shoes I am sure we can never appreciate the situation. Just love each other and be there for each other and hopefully the rest will fall into place. Rest in Peace little Gracie and may God grant your family the peace and comfort they need.


Sue xx


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PostPosted: Mon Oct 11, 2010 10:15 am 
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Joined: Wed Aug 27, 2008 11:36 am
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Location: Newcastle, Australia.
Hi Alley and Jus,

Have no more to add to help you cope - just wish you well.

When my first son died from his brain tumour on the 25/10/99 that was devastating and I found I could only take one day at a time. I had another child Emma now 13 and it was only her dependance on me that really kept me going. It helped knowing why he died (he developed acute demylenination as a complication of his tumour treatment and ended up with a three tier death certificate) but of course knowing why someone has died doesn't bring them back. The constant thinking of how it could be prevented, changed and what-if's is a only time will heal process.

I tried a group called Compassionate Friends which is there to help people of all ages who have lost children from babies to adult children. They have chapters all over Australia and the world and may be of help to you.

Also your local SIDS office may have bereavement services I know some people in Newcastle have gained help for older children through them.

It does help to talk with other people but I am a bit different and find I like to cope on my own. Other people's constant "one-upmanship" annoys the hell out of me and I am not particularly religious.

I have no husband or close family. Like you when Daniel was diagnosed with his tumour two years ago, I had Ethan's death which was from an identical tumour, my Mum was just diagnosed with breast cancer and Dad had severe dementia. Dad died after a year of Hospital stays from his dementia last September just as Daniel was still struggling with demanding physio, eye surgeries and treatments. Today Mum is hanging on in there. Daniel has just come back from a theme park holiday to the Gold Coast and is doing better than anyone predicted.

Try not to take comments other make to heart. I was told lucky you still have another child or lucky you still can have more children. People are not simply replaced. Other people mean well but it is so confronting trying to articulate that sympathy and probably understand it or make it manageable noone really knows what to say.

Sorry to ramble

Love and best wishes,

Sandra Prior


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PostPosted: Tue Oct 12, 2010 6:06 am 
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Location: Melbourne
Thankyou all so much for your kind words and thoughts. I am just taking it one step at a time.......thank god for our son otherwise we woudn't get out of bed. Still desperately searching for answers but not sure that we will get any.......will never accept it but just have to find a way to learn to live with it, but know that Jus's tumour is a walk in the park compared with this.


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PostPosted: Fri Oct 15, 2010 11:06 pm 
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Joined: Sun Jul 20, 2008 10:42 pm
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Location: North Qld
Alley, I wanted to say that I've been thinking of you recently. Your story has touched me, and I hope an answer will soon be your way. If I could reach out and hug you, I would wrap my arms around you and tell you all will be ok. I can't understand life sometimes, but one day at a time, one hour at a time, one minute at a time to get through. Go gently with yourself. You are already under an enormous amount of stress, I hope you are surrounded by family and friends to shoulder some of your load.

Amanda


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PostPosted: Wed Feb 23, 2011 8:09 pm 
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Location: Melbourne
Well latest MRI shows tumour growing. Back again in 3 mths to have another scan and probable surgery. Doc said it is very close to Jus's speech centre - I have asked doc about an awake craniotomy and he said he does them - I think this will be J's best chance at maintaining as much speech function as he can......any other opinions gladly received! Jus not taking it at all well as he doesn't have his little girl to bring sunshine into his life. Why oh why is life so hard eh??


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PostPosted: Thu Feb 24, 2011 9:33 am 
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Joined: Mon Mar 10, 2008 4:03 pm
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Location: Australia
So sorry that things are not going well. Awake craniotomy could minimise the damage, endoscopy can also be safer.

Unfortunately the universe is not governed by principles of fairness :(. In a fair universe none of us would have this terrible disease. When things start going wrong we are in the hands of doctors, most of whom do a great job.

Good luck with the next scan! If there is anything you can think of changing to improve his energy and immune system, this could work well in his ongoing treatment.

I think that a survivor summed up this type of situation nicely recently - 'there is no such thing as false hope, only hope'. Hang in there you are not alone!


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PostPosted: Fri Feb 25, 2011 7:12 pm 
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Location: Melbourne
Thanks Kenobewan for your comments but can you give me more information on the endoscopy?


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PostPosted: Sat Feb 26, 2011 7:02 am 
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Location: Australia
Its also called minimally invasive neurosurgery. I know Charlie Teo uses this technique, not sure who else does.

Here is one description I found:

"The advance of technology allows us today to perform the surgery with the endoscope, which is like a small camera that looks at the pathology. The endoscope has a light source and is connected to a monitor. The surgery is performed while looking at the screen and actual target size is magnified more than a 100 times."

Traditional brain surgery is the craniotomy, in which a portion of the scull is removed. I believe that endoscopy avoids the need for this and recovery time is faster.

Here's a link to a US medical centre that uses the procedure - http://www.uchospitals.edu/specialties/ ... rosurgery/

Hope this helps!


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 Post subject: Life
PostPosted: Tue Mar 13, 2012 7:24 pm 
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Location: Melbourne
So here I am back again. Since our beautiful daughter died in 2010 we have been on a roller coaster of doctors visits and bad news after bad news. After discovering that my son has a cardiac condition then had cardiac surgery, I've been diagnosed with a potentially fatal cardiac condition and lastly it is 2 days till my lovely husband has neurosurgery again for his astrocytoma. It has been such a long wait this time for the surgery date to roll around. Perhaps we were still in shock last time. The only plus side is the neurosurgeon is very confident that he can get my husband back to functioning like he is now (working fulltime, playing baseball etc) I did say to our surgeon that it was nice to have the neurosurgeon to the stars (he has looked after Jimmy Stynes and Molly Meldrum)!!!

There is something totally wrong when you have to discuss organ donation with your 30 something hubbie and give him permission to go to his angel daughter when he is on the operating table should something go horribly wrong during the operation, but I just needed him to know that I wouldn't be angry if that was how things turned out. Luckily for us, we have awesome family and friends around who help us greatly and provide us with much needed support and love. I tell you what though, I am longing for life to get a little easier for us. The last 18months have been pure hell.

Anyway, I wish everyone health and hope in their journeys and will update after Thursday when he is out of surgery.

Thanks for listening

Alley


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PostPosted: Sun Mar 18, 2012 6:37 pm 
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Location: Melbourne
Jus made it through surgery. He's doing really well. Probably being discharged Monday. Pathology showed grade 2 astrocytoma (8 yrs ago it was grade 1) but they are fairly confident that they got it all. MRI post op showed no residual tumour. He is speaking with radiotherapy guy tomorrow but doc is fairly certain they won't do any.

From what I can gather looks like we will just start over with regular MRI's again. Disappointed that it is now grade 2 but it could be worse so for that I am grateful. Jus doesn't appear to be having any speech problems at the moment which he had the first time around. He is walking well and seems ok emotionally. Can't wait to get him home and get him better.

Alley


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PostPosted: Mon Mar 19, 2012 7:40 pm 
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Location: Melbourne
Jus is now home and said that the doctor has told him that the tumour hasn't changed grade from 8yrs ago. With the new WHO classification it was always a grade 2. Hmmm, any one have any info on this new grading system?

The hospital discharged him home with only 4 anticonvulsants and nil script - idiots!! Have just had to ring the ward and they have faxed the script to the GP. Not very good discharge planning I think!!

Stay strong,
Alley


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 Post subject: You are amazing!
PostPosted: Wed Mar 21, 2012 10:18 am 
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HI Alley

I have been following your story and from what I have read...I think you are amazing! It is sometimes nice to hear that there are people that think you are truly a fantastic human being :-)

My husband has been battling Brain Cancer for 5 years and after 5 operations and a round of radiation, I understand how hard it is to be the one walking the journey with them. There are days that are so hard and others that are a little easier...My motto one day at a time. Anything else and Ill probably go mad!

We will find out next week if Oli will have to start chemo, so we are all a little anxious but hopeful that everything will be ok.

Keep smiling :-)

Romina81


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PostPosted: Wed Mar 21, 2012 11:59 am 
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Joined: Mon Dec 22, 2008 6:07 pm
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Location: Melbourne
Hi Romina,

I totally agree it is a difficult journey being the onlooker. I too just take each day as it comes otherwise it all gets overwhelming and appears insurmountable! I hope that all goes well with Oli, and understand your anxiety with all the waiting, its a killer. It sounds like you are also truly amazing and inspiring. I've only been through 2 surgeries so far and they were the longest times of my life, so I can only imagine how it must have been for you doing it 5 times! I think anyone who has to watch a loved one endure what cancer does to the body is amazing, strong and special. It's a terrible disease, but it does make you take stock of your life and appreciate the beauty in each hour of each day.

My hubbie and I watched the Jim Stynes story last night and I have to say we shed many tears. I did say that I am happy to support him with any alternative therapies that he may want to try however I draw the line with drinking ones urine and having coffee enemas!!

Sending much love and strength your way for next week,
Alley


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