After reading everyone else's thoughts, fears, advice, news and words of encouragement I have finally got to the point of sharing mine. Only fair! I have been heartened and inspired by all of you. My husband was diagnosed with GBM in August 2006. The date was also the anniversary of the outbreak of World War 1. Seems appropriate and our battle has actually lasted longer. Waiting for the scan is right up there as one of the hardest things to bear. It doesn't get any easier with experience, in fact it is getting harder I think. Perhaps because the thought of another operation or different treatment and the possible effects that. We travel a line of being okay or not okay. That said my husband has done amazingly well and at 6 and a half years with Glioblastoma is inspirational, to me and I hope to some of you who are looking for confirmation of hope. He has had four craniotomies radio surgery, radiotherapy and has been on chemo now for all of that time. On Avastin for nearly two years now. He is tough but otherwise does nothing special. Eats icecream and chocolate, steak and as few vegetables and green things as possible. One thing he does have and has for the whole time is have a mango every day. (hence my alias). In season it is a fresh mango, out of season a freezer full of frozen mango is turned into a breakfast mango smoothie. Nothing but mango and enough skim milk to make it drinkable. All the best to everyone in this community. Hoping that in one week the news is good for us and for all of you waiting for the next result.
6 Comments
Contributor
Wishing you and your husband all the best. It's nerve wracking waiting for results
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Super Contributor
All the best to you both . Hope you get a good scan result .
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Occasional Contributor
Thank you both for your kind words. I am sure you know what it means to wait. Monday we will know for the next three months. We tried four months this time but in a funny way even though we don't look forward to the scans it is better to have one sooner rather than not. We have two daughters and one granddaughter who just turned one. Jim has survived to see his eldest daughter get married and to meet his granddaughter and it has meant the world to him. So many times she has given him an overwhelming reason to hang in and keep going. Every milestone is a special moment to enjoy and the next one a special moment to look forward to. They live a long way from us but we have discovered Skype so we can keep in touch regularly. Our younger daughter is overseas so Skype helps us keep in touch with her too. The neurosurgeon suggested we could do skype with him as well. Not so sure about that! But maybe we will even get to that sometime as the trip from north Queensland to Brisbane is a bit of a mission sometimes.
Contributor
i'm hoping you had a clear result!? I'm sure your family has had some hard times through all this but I'm so happy for you that your husband is a long term gbm survivor. thankyou for your story - it's inspiring x
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Occasional Contributor
Hi Back in NQ after the trip to Brisbane. The scan result was good. No evidence of tumour progression. The extent of post-surgical enhancement is the same and no remote lesions. Some haemorrhages minor and a fluid filled cyst that is currently not causing adverse impact. Next scan in three months. We are on our way to a seven year survival. No let off with any treatments though. The temodal plus avastin program will continue unchanged and we are adjusting the seizure drugs as they are now seen as the cause of much of the fatigue/confusion general unwellness that we are experiencing. We have had ups and downs with these drugs over the years and I would recommend that changing is good if things aren't going well. Don't accept it as a tumour effect necessarily. We were on Trileptal for quite a while and only discovered that it was the cause of nausea and unsteadiness after about a year of experiencing these symptoms. The symptoms did not start immediately. The meds were tolerated well at first, the problems developed after a couple of years. Going off the trileptal was like a miracle at first but now we are having problems with finding a combination that fixes seizures effectively while not mucking with wellbeing too much. The current trial is Keppra plus Lamictal. Perhaps this would be a good topic for a forum? Thanks to all for your best wishes.
Contributor
thankyou for sharing this great news! it's so helpful to my spirit to hear a positive gbm story!... really go well! xx
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