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 firstname.lastname@example.org. 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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Hi Sezzy 1983, A bit of trivia, my niece is a Clinical Nurse at the Mater Private Hospital in Brisbane she too is called "Sezzy" real name Sarah and when her cousin was wheeled out and put into ICU after having a Craniotomy for clarification of her diagnosis of a Brain Tumour Sezzy told them " Look after my cousin or you will have me to answer to. A huge protection mechanism is put into place when someone so close has been diagnosed with this horrendous disease. My daughter, like your husband was told before surgery it was Oligodendroglioma but after the craniotomy was told by pathology it was a Oligoastrocytoma grade 2. Hers was inoperable to close to brain function that you need to get you through the day the Dr. said. So she had 25 sessions of Radiation. At this stage Chemo is not required so that is money in the bank for later on. She had only one part of the 1p 19q co -deletion which if positive for both the prognosis is better. Did your husband have either of these. My daughter was diagnosed just before her 37th birthday in 2011, she has just turned 39 and comes to Brisbane next Monday 26th May for her 6monthly MRI. As you well know we are feeling a little stressed at the moment. Her twins a boy and a girl had just turned 4 and her other little one was 2and a half at the time of diagnosis. Her husband is her primary carer and because I live in Brisbane I am her secondary carer. Your husband is so very lucky to have you as. My daughter is to have her wonderful husband. My daughter lives in central Qld so I fly out there often. I only came back a week ago and I am going back this week when she comes down for the MRI. Her twins are in grade 1 and the other one in kindy. They have their own business and my son-in-law sometimes has to work away so I take care of the children etc. my son-in law is wonderful just like you Sezzy , don't ever be to hard on yourself and you deserve to let fly with all that emotion that creeps up on you. Brain cancer has the biggest impact both. Emotionally and financially than any of the other cancers, because it is the Master Gland, it's what gets us out of bed in the morning and hopefully allows us to enjoy this life we were all meant to have. Do you have family around you although I have found they dont really understand. I actually find it hard to talk to mine and unless you are living it you really don't know only people going through it. When I wake each morning my daughter is the first person I think of and because I am in Brisbane I ring her to check on her day. Radiation has.left its mark and she is literally stuffed by the time she has to get the kids from school. So her husband try's as best as he can to organise his business around her day to be home to help. Most people don't think outside the square and I get rather annoyed Ihave to bite my tongue sometimes for fear of offending people. Your hands are full with your little ones and I know what twins are like I have been their with my daughter. Then there is the house shopping bills to be paid and lots lots more and that's without looking after your husband. I have another daughter in Brisbane who also has 3 little children and and up until recently I was helping her out 3 full days a week as she works part time, that has now dropped back to 2. I do that every Tuesday and Wednesday then jump on a plane and go to Emerald on Thursday to help my daughter if they need me which happens a reasonable amount of time. My husband is on long service and due to officially retire in July, no long trips away or exciting times to plan. If one more person says to me "Try not to dwell on it if you can" or "Stay Positive". I. Think I will scream. I even feel sorry for myself and I feel guilty about that. I just never thought one of my children would have a Brain Tumour and the fact. She is an adult child and I can only suggests things. She and her husband do include me which Is good of them. She just gets on and lives her life as she says she knows things will go belly up she just doesn't know when. Her Neurosurgeon didn't give a prognosis just said it will shorten her life. She lets me do all the research and checking on new drugs and treatments etc . When I look at my grandchildren it always goes through my mind how long. Will they have their Mum for as I am sure you do with your little ones where their dad is concerned.When I come home from being with them all I usually have a bit of a meltdown. It all becomes overwhelming at times and I cry, yell swear a bit, no make that quite a lot and really feel like slapping someone anyone just to get rid of those highly charged emotions.You are in a worse situation than my daughter and I am dreading any changes that I know. Which eventually happen . You are in my thoughts and I hope you have some good days in there somewhere. Take care of yourself, it's good you have a good network of people around you. They need to take care of the Carer.
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You must do what is right for your own situation. There are probably no two situations the same in this world of Brain Tumours. My daughter has a grade 2 Oglioastrocytoma in the right front parietal lobe. It is inoperable because it is to close to vital brain tissue which governs everyday life. Surgery would paralyse her down the left side of her body so she had Radiation. Chemotherapy will probably be used down the track . She now has the dreaded 6monthly MRIs. As a young mother of 6year old twins and a 5 year old she has her hands full. She and her. Husband run their business , this has been a juggle act as her memory is no good as a result of the radiation so she takes care of the children building memories for the future for them. Her husband does hard physical work but is wonderful and never complains. He works in well to help her as chronic tiredness also as a result of the radiation knocks her around. As she lives in central Qld I fly out as often as I can as I live inBrisbane. Between us we manage. They have to work as most people do as there are no good fairies for any, if only. No one should ever feel guilty about the decisions one has to make. As the old saying goes"Walk a mile in my shoes".
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.