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 Post subject: Nicole
PostPosted: Fri May 26, 2006 10:35 am 
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Location: elliott heads, QLD
My name is femme, my daughter Nicole was diagnosed with GBM early Jan. 2006.
Nicole had been complaining of headaches and her personality changed from happy go lucky to not wanting to do anything. Even Christmas she did not want to celebrate. She had many days off work as a financial controller. She decided to see doc. who said you may be suffering from migraine, gave her some meds. but headaches did not subside.
Doc. then recommended to have scan done. Results came back and the news was devastating, massive tumour, it was 3/4 of the left side of the brain and had pushed the brain into the right side.
She was admitted to PA emergency with letter from doc. there she waited 18 hours for a bed. I live in Elliott Heads which is 5 hour drive from Brissy
and made my way there with my husband, at this stage we had no idea this was GBM. Finally after 2 cancellations for surgery she had tumour debulked, this was done early Monday morning, she breezed through op. whereby we thought all is ok now.
Well what a shock it was when a nurse came in and ask Nicole when she was starting Chemo. We then realised things looked grim, this was said before the surgeon even spoke to any of us with result of surgery.
I was absolutely livid by then, waiting 18 hours in emergency, then 2 ops. cancelled now this.
I lost my cool then, Nicole decided she wanted to go home and we took her as there was no reason to stay any longer.
The staff at the PA ( well most of them) were wonderful now my beef was with the Health system. Nicole waited nearly 7 weeks to start her radiation and chemo. which to me was ludicrous. Reason for delayed treatment we were told there was a massive backlog and there was no money in their coffers. I had done so much research and found treatment is suppose to start within 2/4 weeks. That answer was NOT GOOD enough, this was my daughter not some mumber.
Anyway to cut story shorter I decided to write every politician I could find and tell them our story. Finally received a letter from the health minister and that stated he had contacted the hospital who said they had offered Nicole earlier treatment in a different hospital. Yes they did, as their MRI machine broke down she had to go to the Royal brisbane for that, NO OTHER TREATMENT!!!!!
I took the letter and showed them, they had no answer as what they told the health minister was a blatant lie.
I then decided to contact A Current Affair, they ran the story, since all this PA hospital, we were told has been allocated more nursing staff for oncology, more hours in radiology and funds have been allocated to Cancer services. They did thank us for that, well if it helps others thats great but my aim was to get prompt treatment for Nicole.
I ask why???? do we need these extra burdens when we have so much t cope with.
AT present Nicole is doing good, she had 6 weeks of treatment (radiation and chemo.(temodal). Had a month of and had another MRI done. The results were wonderful, between surgery and 7 weeks waiting for radiation/chemo to begin there was again 5.8 cm tumour, this has now shrunk to 2cm. She also takes GOJI Juice and shark liver capsules.
She has now started adjuvant temodal treatment (5 days in 28) for 6 months.
She is still not allowed to drive but is able to return to work part-time.
Words cant describe how we feel. so I say, never give up, do as much research as you can as knowledge is power and ask the docs. as many questions as you like. I would also like to acknowledge the Qld. cancer Fund for all their support.
Dont sit back and let this disease take over, keep the faith and hope as MIRACLES may occur.


Last edited by femme on Thu Oct 19, 2006 2:41 am, edited 2 times in total.

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 Post subject: To Nicole and femme
PostPosted: Sun May 28, 2006 5:23 am 
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Location: England
I read your story today, with great interest. I agree that it should not need people like you to shake up the system, at a time of such great stress. I live in England and despite being a 'free' health service (although we pay for it in our taxes) I still had much to get upset about. Delays, cancellations and even being told I was imagining my symptoms etc.

I am thankful I am doing well now but the beauty of a site like this is it gives you strength and re-assurance that it's not just you going through it all.
Nicole's story and the background to it touched my heart. Keep that positive outlook. Miracles certainly do occur, they may seem rare to non-believers but they are there. Nicole is fortunate to have you. Other sufferers have no advocates and that worries me.
Keep us posted and take care of yourself in all this too. Essential!
Best Wishes
Jacqueline


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 Post subject:
PostPosted: Thu Jul 06, 2006 4:25 pm 
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Thank you for not just whinging about the system but doing something about it.

My mum was diagnosed in May 2006 and was operated on within a week but then was told she had to wait almost 8 weeks for radiation. Mum has Grade 4 GBM and this was not acceptable to us her children.

Mum is now in her second week of radiation and Temodal at Royal North Shore Hospital and we are hoping (understatement) against hope that this is effective.

It is tough getting her there from Newcastle but considering I would take her to Mars to get her the best treatment we are not complaining about a two hour trip down the freeway.

Is Nicole on any other treatment now othere than Chemo?


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PostPosted: Sat May 23, 2009 2:38 pm 
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Location: elliott heads, QLD
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Hi everyone, Just a quick update on our daughter who was diagnosed with GBM in Jan. 2006 she had tumor debulked and recovered well after surgery, she then had 6 weeks of Rad. and 18 months of chemo.
The extra 6 months was a battle to get for her as the government would only allow 12 months of chemo. But when I told them I would contact the media again they decided to give her the chemo for another 6 months.
She has just passed the 2 year mark of her initial diagnoses and her latest MRI done last friday (22 Feb. 2008) showed no visible signs of tumor.
To say we were over the moon with happiness is an undrstatement. She has now returned to work full time and does not need another MRI for 6 months.
I believe with all the support, medical intervention and her so positive outlook on life has made this all possible. We will never give up the fight.
So to all remain positive and take care


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 Post subject: next MRI
PostPosted: Sat May 23, 2009 2:43 pm 
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Hi everyone, just thought I would update Nicole's story as someone suggested. Nicole has passed the 3 year mark in Jan. this year. She is doing so well and has been working fulltime for more then 12 months.
Her mext MRI is the end of next week and I always get a bit anxious although Nicole does not seem to be to worried.
She is on NO medication what so ever, and just has this incredible positive outlook on life.
She recently returned from N.Z. where she had the most relaxing time with her husband. I am so proud of my girl, she is an inspiration to many.

Where there's FAITH there's hope and where there is HOPE MIRACLES can occur.


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 Post subject:
PostPosted: Sat May 23, 2009 2:55 pm 
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Location: North Qld
Femme, thank you so much for updating us on Nicole's progress. That is outstanding! You all must be so happy, you have certainly given our family a little hope that things can be better than what the doctors tell you.


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 Post subject: nicole journey with GBM
PostPosted: Sat May 23, 2009 5:06 pm 
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hi Amanda, if there is just one person we give hope to, then even that makes a difference.
We have always refused to believe the doctor's when they first gave Nicole the prognosis, no way in hell can they say when youre time is up, we are all unique and we all deserve the chance for a great future.
take care and keep positive.


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 Post subject:
PostPosted: Wed Aug 19, 2009 9:06 am 
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Hi Femme - I have read Nicole's story time after time (whenever I've gotten a little down).It's really uplifting. All the best to you an Nicole.


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 Post subject: nicole
PostPosted: Wed Aug 19, 2009 11:17 am 
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Hi Morpheus,
Hope this message finds you in good health, our daughter Nicole is doing great at present, she has now passed the 3.5 year mark. In November she is due for another MRI which will be great again. I truly believe our child has an Angel sitting on her shulder, but most of all is that wonderful positive attitude she has and maintains.
When they told her the prognosis of this GBM she refused to accept this, she was not in denial of having it but she refused to believe the timeline they gave her. Her determination to see her son (age 10) get married and have grandbabies is her goal.
Words cannot describe how proud I am of our daughter, she lifts me up.
Take care femme


Last edited by femme on Thu Dec 03, 2009 10:19 am, edited 1 time in total.

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 Post subject:
PostPosted: Wed Aug 26, 2009 5:43 am 
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Hi Femme.
May I ask you, did Nicole make lifestyle changes after the initial treatment?


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 Post subject: nicole
PostPosted: Wed Aug 26, 2009 8:45 am 
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Hi ,
You asked did Nicole make lifestyle changes??? she made no changes whatever, she did take GOJI juice for a few months and sharkliver tablets, these were mainly to give her energy as she was so tired from the treatment at the time. At present she works full time as a financial controller, she started back 12 months after surgery with a few hours each day which over time increased to full time. She drives her car with the ok from the docs.
She has travelled to N.Z. twice and just loves life.
Positivity is her motto,best wishes to you and your family and keep in touch.


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 Post subject:
PostPosted: Thu Aug 27, 2009 5:43 am 
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Quote:
Her determination to see her son (age 10) get married and have grandbabies is her goal.

Femme, You've got no idea how inspiring I find Nicole, with young small girls, I'm starting to feel I can dreaming a little about seeing them get older.


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 Post subject: nicole
PostPosted: Thu Aug 27, 2009 10:08 am 
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Hi ,
Thank you for your feedback and let Nicole know, she is an inspiration to me and many others, dont start dreaming about seeing your girls get older, make it your goal.
another of our motto's is "where there FAITH there HOPE, where there's HOPE, MIRACLES can occur"
Take care Femme
p.s always try and stay positive, life is so worth living and dont let the medicos predict to you when time is up.


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 Post subject:
PostPosted: Thu Aug 27, 2009 11:49 am 
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Ofcourse Femme, you are so right - sometimes you need the right person to tell you these things - and you are definitely the right person.
Thank you so much.


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 Post subject: Another Christmas
PostPosted: Sun Nov 29, 2009 8:35 pm 
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Hi all,
Just a quick update on our daughter Nicole, she had her MRI done last FRIDAY, again the results were wonderful, I thank someone in this Universe each day for this.
To think her prognosis was not even seeing Christmas 2006, well she has proved all the medicos wrong she will be celebrating Christmas 2009 with her family.

Never give up hope and always remain positive, we wish you all a happy and healthy Christmas. :) :) :) :)


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