Hi all,
I am the mother of a 34yo son with a grade 4 GBM. It was hard to cope with the news, especially as not much was told to me, only to his partner,and I was under the impression that because most of the tumour was removed, that meant my son was ok. How little I knew!
My son was diagnosed with GBM last October, 2010. He had the tumour removed and was given radiotherapy,and then chemo for 6 months. Three weeks after the chemo finished, he had an MRI, and was told that the tumour had grown back, although only about a third the size of the original. Another operation, and now he is participating in clinical trials of the drug Avastin as well as another chemo drug, not sure of the name, at the Royal Melbourne Hospital.
As his mother, it has been devastating for me to see my son suffer with such a rotten horrible disease, and I am helpless to do anything about it...I can't "kiss it better" as we mothers do when our children are little. I found that, when the second tumour was discovered, my son and his wife were almost hysterical and panicky and didnt know where to turn for advice etc. It was seeing them like this, with my daughter-in-law crying on my shoulder and my son looking at me with that look in his eyes that said "help me, Mum", that I decided there and then to get a support group in our city going, for brain cancer patients and their families and friends.
I was lucky enough to enlist the help of a lovely lady who had actually nursed brain tumour patients at the RM for a long time, and had the experience, the passion and the compassion to see what I wanted to do, and to be able to help me. Her contacts have been invaluable, and we are now at the point where we will be affiliated with the Cancer Council of Victoria and be part of their support group network in this state.
At the same time, my son's mother-in-law is organising a fund raiser to get the money to continue with the treatment once the trial is finished in eight weeks, so my son is a lucky young man to have three strong women on his side, and by his side, through such a painful journey.
The thing that helps us all the most is being able to do something useful and keeping a positive outlook, although that was almost impossible for me for the first few months as I was in tears for most of the time and unable to function at times, my grief and my fear and my anger were so great. I have since been prescribed antidepressants and this has helped me to be strong again and to get this support group off the ground. I never once allowed my son to see me like that, and that was wrong because, once I was strong enough to be able to tell him, I found that he knew anyway.
I would like to say that I really feel for the people who are "walking the path" with loved ones with GBM, that its hard to keep positive and hopeful, but it helps if you have the information you need, to know what you and your loved one are dealing with. That is the problem I had, and I wouldnt wish it on anyone!
