No I haven't Richard, but I do know a couple of people who have had it or are still coping with it.
Once again it doesn't HAVE to be a death sentence and there are many times it can be destroyed, so if you have brain cancer don't give up, just one foot in front of the other each day and hang in there okay? 😉
Hmm,maybe I should explain my situation a little bit further. It has been nearly 10 years since my last treatment so death is a remote possibility. I have some cognitive deficiencies as well as some physical ones from my treatment.
I don't know any brain tumour survivors who have lived as long as I have. Most people die in the first 2 years after diagnosis. I am presently struggling with having 2 children under 5 (as do most other parents).
I think that brain tumour survivors have extra problems that survivors of other cancers do not as well as the social impacts that having any cancer may cause. Treatment can affect your cognitive function, it's like having the effects of chemo brain permanently & there are very few other brain cancer survivors to talk with about their experiences.
To give you a better idea of what I'm talking about have a look at the Australian Story on ABC this week.
The Wronged Man - Part One27/09/2010
Andrew Mallard was a young man living homeless on the streets of Perth when he was charged with the murder of Pamela Lawrence.
He was convicted of her murder in 1995.
He served twelve years in prison before the combined efforts of a journalist, a politician and a team of high profile lawyers – who took the case all the way to the High Court of Australia – finally saw him exonerated.
Andrew Mallard is speaking out for the first time about the circumstances leading up to his wrongful imprisonment and the failure of the justice system that put him there.
Andrew's experience resonated with many of the issues that I have faced. To live successfully in society you need your brain to be able to think & make rational decisions. In this case our justice system failed this man who clearly had a mental illness. There may well be others but he is someone who is able to tell about his story, many years after his problems started.
Anyway enough ranting on, can you tell me about the experiences of the people you know who have had brain cancer and are still coping with it's effects ?
That must be tough for you with having those side effects from your treatment. I have a friend who is now brain damaged from having a stroke and she has had to stop working and I highly doubt she will ever be able to return to working again. Could you get some assistance from the brain injured society? I know my friend has had some help from them and they have seem to have quite a lot of resources available.
I didn't have brain cancer but your frustration resonates with me. I have awful experiential memories of people assuming I was stupid, people talking over me, being bullied etc, etc, and general feelings of being overlooked and cast to the margins of society post cancer treatment, and beyond. To me it seemed as though I was in a jungle and it was pure and raw survival of the fittest, and I was going down.
It's been really difficult. To just mention it now opens the floodgates a bit. I still struggle with terrible feelings toward my family that basically abandoned me, and the rest of the family who apparently couldn't muster up a phone call or a word of support in my general direction. To say it's difficult is just too simple a word to encapsulate the painful jumble of feelings...
Anyhow, so I'm hearing you. We get on best as we can.. It brought great relief for me to read some of the experiences on this site - I now know that I'm not alone in my experiences, where before I thought it was personal, and that people (family/God/the devil) had a kind of vendetta against me... It's a good start for me.
Re the ABC program, I watched this also, and could relate well to the - being out of your mind - bits and being perceived completely inaccurately. I put it down to trauma as well (as chemical effects from chemo). Personally, I've been hugely traumatised by the experience, and as much by the having to cope along the road when I was plain mental with the stress of my own survival. I am quite sure I have had several mental/emotional breakdowns during my journey.
I thought I'd share with you that you may feel less alone also.
Hi Sarah ... wow I think in some ways I could have written your post. 🙂 I get so "over it" by the processes we have to go through and the totally uneducated people we are forced to deal with. I feel like if I have to explain to one more person I am going to scream and most of that applies to non friends and family at the moment. They are a whole new ball game for the most part.
The system is insanely widespread and any help that is meant to be out there is often hard to access.
I had something said to me recently and it was quite crude yet accurate and I will have to think of something non crude to transalate it into to put it on this site. At the moment the ability to do that escapes me and I am sure some of it will get lost in the translation.
Just to add on: great to see sharing and support here! I think what is common to us is the seeking of & getting support on this forum. Good on us all for getting online and having a shot.
I share that experience of being shocked twice round when family and friends turn their back on you. The very people you thought would be there! And the added weight of a toddler to deal with. Not fun.
What made it worse for me was hearing all those other cancer stories about people having wonderful support from their families and how much it helped them. Salt into the wound!
So here's a pat on the back to us lot...we struggle on and our efforts are mighty.
I know we have strayed off topic a bit but I'd like to say keep posting, Richard - there are lots of people out there for you, it's just the timing.
"What made it worse for me was hearing all those other cancer stories about people having wonderful support from their families and how much it helped them. Salt into the wound!"
Ha ha, that's funny Matsy - it's soooo true!! and, if I don't laugh, I'll cry...
I felt awfully trapped with these intense and new feelings as well; they were not very comfortable feelings. I felt that if this kind of resentment, envy, or whatever, was uttered, I'd either get slammed by your inner critic, or judged by others outside who make some kind of assessment about why you have the illness in the first place...
To give and example, I hated seeing all the publicity about (our dear) Kylie suffering from cancer, and how brave she was.... It was such an (insulting) contrast to my own reality, and others that I knew who were out there, whereby we couldn't make it to the shop to get basic foods, or afford a wig, let alone fly to the Bahamas for our recovery, or have the whole world sending good wishes, support and flowers!!
Boo hoo, don't think I ever got flowers....
.......If I could've zipped off to some luxurious paradise, I would surely have been so very brave too!! 😉
I felt trapped as any attempt to express these feelings to 'normal' people just would've come out as unsympathetic to another persons situation, or worse.
I think that our experience unveiled a new perspective on life so very suddenly, and without any graduation to give us time to adjust, resulting in a huge shock. The emotions that follow in response, are very overwhelming and confusing to deal with. And, unfortunately, it's all in one's own head only! Sadly, cannot share or compare notes with others.... only adding to the confusion and isolation 😞
Yes, that's why well done to us for getting on to this forum.
Sorry, I'm a bit off-topic now too......
The Brain Injury website explains a lot,
I fall into the Non-Traumatic Brain Injury category. They explain how the effects of a brain injury can be wide and varied depending on your personality & circumstances but the list below applies to me.
Typical cognitive (thinking) changes after brain injury can include, but are not limited to:
•Difficulty paying attention
•Easily confused and overwhelmed
•Problems in learning new information
•Reduced memory for new information
•Problem-solving, planning and organising difficulties
•Stuck on ideas and fixed patterns of thinking
•Difficulty starting activities
•Slower at processing information
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.