One patient with glioblastoma still alive nine years later
by fatemeh on Wed Nov 28, 2012 06:43 AM
Wow, what great forums to stumble upon! I am so grateful that you are all here and we can support each other this way.
I am really suffering right now. In August my father was diagnosed with pancreatic cancer in its extremely beginning stages, so right away I went back east to be with him and try to help out. I stayed for around a month, till after his surgery and things were stable, then I came back to the west coast. After 6 days I received a call that he had almost died due to internal bleeding so I rushed back to the east coast for another month. More caregiving. We live about 1 - 1 1/2 hours from the hospital, so each day the transportation was exhausting, not to mention the cost of cabs, parking, gas, eating out constantly, etc. AND of course the emotional strain of seeing him struggling each day and watching my mother get torn to pieces.
My brother is a narcissist and he was there. Sadly, he was extremely abusive towards me, consistently telling me I wasn't doing enough, blowing up at me in rages for taking a two day trip to visit friends, etc. He also was very abusive towards nurses and patient advocates, yelling and screaming at everyone, threatening people, etc. The hospital called security on him once because it had gotten so bad.
I come from a background of abuse, so this was deeply triggering. I also struggle with addiction. I began to drink and use prescription pain pills to manage the intense emotions. It just got worse and worse and eventually I had to leave and come home to get myself straight.
It's been about 3 weeks and I have my feet almost on the ground but I'm feeling a lot better. My father remains in the hospital, clear of medical problems, but he won't eat nor will he walk. He has no motivation. I have been asked by my brother and my cousin to return to help out.
I find myself deeply frustrated by this for several reasons:
1) Total lack of respect for the fact that I have a life going on here that I need to live.
2) What can I actually do for my father? I tried to get him to eat while I was there; he wouldn't eat. There are no magic words to get him to eat. There's nothing we can say or do to help. We tried to get him on antidepressants, he said no. He doesn't want therapy. He doesn't want to talk. What can I do?? There really is nothing I can do that will magically cure this problem.
3) I have no desire to put myself in dangerous situation with my brother again.
4) Since I have been back I have stopped drinking and using drugs and I fear losing my sobriety if I return.
So that's the gist of what's going on with me. Yet, the pressure remains, and I don't know what to do about it. I am suffering deeply as a result of this.
I am mostly worried about my mother right now. She is being torn up by this situation. But yet again, there is nothing I can do to make her pain less. She will be heartbroken no matter if I am there or not. Sure, my companionship might be "nice", but at the end of the day its not going to cure anything.
I don't know. I'm just looking for some help, stories, guidance, whatever. If you can relate to any part of this story, anything at all, please respond. I'm desperate.
by Azgolfer7522 on Thu Nov 29, 2012 03:32 PM
What you are doing so far is great. I suggest that you make sure the people in his support system there visit and comfort him whenever possible. If he is a religious person, make sure he is on a prayer chain. Having family members provide care and comfort is almost obligatory, but friends are so important to helping your dad maintain his spirits.
My kids are 2200 miles away and I have lung cancer including removal of affected lung. While the kids came at appropriate times, having friends care and support me was very important. I have seen prayer work in my life and it can work in his.
by tonyb1958 on Fri Nov 30, 2012 12:45 AM
My father was diagnosed with throat cancer when he was 81 years old. He had been living in a caravan park with my mum for 18 years. They lived in Melbourne all our lives. I still live in Melb. When he got sick he was rushed to Perth Hospital for surgery and chemo and radiation therapies. Sorry, they lived in Carnarvon, 1000 klms north of Perth. I and my sister repeatedly dropped everything and flew to Perth. My father had alway (when I was young, been abusive towards me) but I had never told my sister as she is 15 years older than me and had moved out of home before the abuse started. Dad and I were never what you would call real close. but those last months he was with us, I will treasure forever. We reconsiled, sort of. I was there holding his hand when he died. I am now stage 2 bone marow cancer myself and having chemo. I now know why I felt so close to Dad in the end. Just to hold his hand and give him a kiss and tell him I loved him before he passed has help deal with the loss. The abuse I suffered all those years ago, I have managed to let go of and use it to gauge how I raise my own kids.
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Destination: HOPE. Cancer care that is worth the trip.
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