I'm new - Brain Cancer

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I'm new - Brain Cancer

Hi everyone, I am completely new to this. I was diagnosed with GBM and am feeling at a loss. My partner tries to support me but don't really know how. Any advice on where to look for more helpful information?
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Re: I'm new - Brain Cancer

I'm sorry to hear of your recent diagnosis. My husband is currently undergoing treatment for GBM also. I'm not sure where you are based but there is a group called NOgIN who run talks and support groups for people affected by brain cancer. They are based at Westmead but if that's not in your area they may still be able to offer support or point you to other local groups. I wish you all the best.
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Re: I'm new - Brain Cancer

Hi RJMCG, very sorry to hear of your GBM diagnosis. I have been travelling this path for the last three and a half years, as my daughter was diagnosed with a Grade 2 Oligoastrocytoma in February 2011. At that time we were told it was inoperable and she had a craniotomy followed by radiation. We excepted this and has been my wish she get a second opinion, which she now has. This came a out because I read a book called "Three Quotes from a Plumber," written by Sally White. Sally is a survivor, and encouraged by her sister who said to her, If you were building a house you would get three quotes from a plumber. So asked her to get another opinion. She had further surgery and is going great. Dr Charlie Teo did her surgery in Sydney, Sally lives in Melbourne. There is a strong possibility my daughter can now have surgery, we will know this at the end of September when she has hern next MRI. As my daughter is 40 with 3 young children she looks after them and her husband, I do all the research and have joined many groups to get as much information as possible. My daughter lives in Central Qld but I live in Brisbane. A group of people who are great are called Brain Tumour Alliance Australia, (BTAA) they are advocates for patients and their families and have a lot of information they would be only to happy to forward to you. The contact I can tell you is a lovely lady called MaryAnne Rosier, they have a phone free call line 1800 857 221 or email btsupport@btaa.org.au. Also another group called Braincancer - GBM Support & Awareness website is btsurvivor.com I hope I have helped you in some small way, please feel free to ring me also my landline is 0733725949 or mobile 0412283767. We are all hoping for the same thing here a Cure. I will keep you in my thoughts. We found it much easier to deal with once we got more information. Kindest regards Pdh.
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Re: I'm new - Brain Cancer

Hi I am so ,so sorry to read so many with dreadful diagnoses 😞 my heart aches for each one I read. Well I'm new to this cancer thing all together. We have no history of cancer in my family (Dads side) and then BANG !!! Dad having a grand mal seizure 2 months ago diagnosed with GBM grade 4 with 4 tumours ( now 3 one removed).Even as I type this, I find it all too unbelievable ! I didn't even know what this grade 1 2 3 4 meant. I had heard of people mentioning it around me ,but to be honest never really paid attention. Well, now I am paying attention. My world has and will be changed forever. I am hoping to read other stories on what worked ,what didn't ,and any suggestions on anything. My Dad is 63 and is my world ,my mentor, and my go to guy, not only for me but my two sisters, son-in-laws, and all his grandchildren. Thanks for suggesting other websites to serach . Cheers Kerrie
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Re: I'm new - Brain Cancer

Hi I am so ,so sorry to read so many with dreadful diagnoses 😞 my heart aches for each one I read. Well I'm new to this cancer thing all together. We have no history of cancer in my family (Dads side) and then BANG !!! Dad having a grand mal seizure 2 months ago diagnosed with GBM grade 4 with 4 tumours ( now 3 one removed).Even as I type this, I find it all too unbelievable ! I didn't even know what this grade 1 2 3 4 meant. I had heard of people mentioning it around me ,but to be honest never really paid attention. Well, now I am paying attention. My world has and will be changed forever. I am hoping to read other stories on what worked ,what didn't ,and any suggestions on anything. My Dad is 63 and is my world ,my mentor, and my go to guy, not only for me but my two sisters, son-in-laws, and all his grandchildren. Thanks for suggesting other websites to serach . Cheers Kerrie
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Re: I'm new - Brain Cancer

Hi My husband has just celebrated? 8 years with GBM. Surviving is tough but possible. Out there are quite a few survivors, more and more living longer and longer. I find Cheryl Broyles Facebook quite uplifting Ben Williams from the virtual trials site writes in great detail about treatment options and the American support groups through the American Brain Tumour Association very active on-line. Good luck
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Re: I'm new - Brain Cancer

Hi Mango WOW !! 8 years that is just fantastic !!! How wonderful :)you have put a smile on my face today. Thank you for your suggestions and I will have a look. Over my reading and research I have found that there isn't much "stuff" on brain tumours in Australia (or funding for that matter). Heaps on breast cancer and melanoma though which I have found interesting/ concerning. Again thanks for info Cheers Kerrie
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