Well my in-laws met with the doctors at UW that did his surgery back in April for a second opinion. It's not good news. They said he should not be having tumor regrowth this soon after treatment, and his episodes of confusion are mini seizures. He was ordered to stop driving and stay home from work a couple weeks.
He will continue with the stronger chemo drug, but this is such an aggressive type of tumor, that the outlook is not good. For the first time ever, my FIL asked life expectancy. Two years.
Fuck, guys. He's only 52. I still can't believe all this. H is (obviously) upset and I don't even have anything to say; I just hug him and hold him. What else could I/should I be doing?
Ack I'm so, so completely sorry, Rox. Whenever you need to vent, ask for ideas, let your emotions out (away from your H), please remember you have some strong supporters on here, lovely girl. Eta: Meant to add my agreement that it sounds like you're doing whatever you can for H. He knows he's got you when he needs you, which is the most important. Just show your love & support as openly & often as you can.
I'm so sorry. I think you are doing the exact thing you should be with regards to your husband. Just being there to listen to him and love him is going to comfort him.
Oh my goodness. He's just a year younger than I. I'm so sorry. Like PP's have said, there's not much you can say except offer support and be ready to help out whenever asked. It'll take some time to come to terms with this bad news.
"Why would you ruin perfectly good peanuts by adding candy corn? That's like saying hey, I have these awesome nachos, guess I better add some dryer lint." - Nonny
Ugh, I'm so sorry, Rox. It sounds like you are doing all you really can do at this point. Just be there for your H and offer his family help when you can.
apalettepassion.wordpress.com/ WHO IS BONQUIQUI!?!?!?!??!
"I was thinking about getting off on demand, but it sounds like I should be glad that I didn't"
For now, I say give the ILs some space. They have been given devastating news and they're going to need some time and privacy to sort through their feelings. Call them in a couple of days and check in on them.
When the time comes that they might need help, make your offer something they can't say no to. Don't ask, "Can I do anything for you?" ask "I can either go grocery shopping for you or come over and clean while you rest, which will it be?"
Also, my friend told me this after he was given his very short life expectancy: Don't go around saying "miracles can happen!" or "the doctors might be wrong". I know I'm going to die. Everyone is going to die, I just have the unfortunate situation of knowing when. (His words)
Thanks for all the support. It means so much to log into the board and see all the nice messages. It truly means a lot.
Thanks also, His, for all the good advice of practical things I can do to help. It's hard because they live 3 hours away, but we are going to start making visits to them monthly (it's hard to go more often because H works on weekends). I will definitely keep this advice in mind and the wording of how to offer help.
Post by underwaterrhymes on Oct 1, 2013 19:28:37 GMT -5
I'm so, so sorry.
The best thing I can tell you is not to focus on the life expectancy piece. Focus on the life QUALITY piece. Make every minute that he has left with you count.
FWIW, they told us they told us that my stepdad had a 14% likelihood of surviving the summer.
For now, I say give the ILs some space. They have been given devastating news and they're going to need some time and privacy to sort through their feelings. Call them in a couple of days and check in on them.
When the time comes that they might need help, make your offer something they can't say no to. Don't ask, "Can I do anything for you?" ask "I can either go grocery shopping for you or come over and clean while you rest, which will it be?"
Also, my friend told me this after he was given his very short life expectancy: Don't go around saying "miracles can happen!" or "the doctors might be wrong". I know I'm going to die. Everyone is going to die, I just have the unfortunate situation of knowing when. (His words)
And all of this is very, very wise.
Just allow him to feel what they need to feel and be there for them.
I'm really sorry, RoxMonster. I'm usually pretty reluctant to share details of my husband's story, because, let's be real here, he didn't have a positive outcome. He survived 17 months after his GBM IV diagnosis (he died at 57). I probably don't need to tell you that how the disease manifests depends on what part of the brain is affected, but if it makes you feel any better (I won't be offended if you tell me to eff off and stfu though), my husband never had so much as a headache the entire time he was sick. And the chemo wasn't tremendously hard on him, for the most part. Has your fil heard of th novocure device? It's electrodes that are atteched to the pt's head and emit electromagnetic fields that interrupt cell division. Of course, tumor cells divide faster than brain cells, so the brain is pretty much unaffected. He was in a clinical trial for the device but I understand it's now approved for recurrent GBM and maybe lung and breast cancers, too.
good luck to you and your family. here's the site for Novocure
I'm really sorry, RoxMonster. I'm usually pretty reluctant to share details of my husband's story, because, let's be real here, he didn't have a positive outcome. He survived 17 months after his GBM IV diagnosis (he died at 57). I probably don't need to tell you that how the disease manifests depends on what part of the brain is affected, but if it makes you feel any better (I won't be offended if you tell me to eff off and stfu though), my husband never had so much as a headache the entire time he was sick. And the chemo wasn't tremendously hard on him, for the most part. Has your fil heard of th novocure device? It's electrodes that are atteched to the pt's head and emit electromagnetic fields that interrupt cell division. Of course, tumor cells divide faster than brain cells, so the brain is pretty much unaffected. He was in a clinical trial for the device but I understand it's now approved for recurrent GBM and maybe lung and breast cancers, too.
good luck to you and your family. here's the site for Novocure
Thank you for the information, and I am so sorry about your H.
My FIL actually said that, after his brain surgery in April, he felt better than he had in 20 years. For 20 years, he had low grade headaches that he never got checked out (not sure if it's related or not, but probably so). He actually feels good right now, except for the slight loss of peripheral vision (the tumor was right near his vision center), and now the recurring small seizures where he gets confused (today the doc asked him what year it was and he said 2003).
I will definitely look into the Novocure; I had not heard about that.
Thank you for the information, and I am so sorry about your H.
My FIL actually said that, after his brain surgery in April, he felt better than he had in 20 years. For 20 years, he had low grade headaches that he never got checked out (not sure if it's related or not, but probably so). He actually feels good right now, except for the slight loss of peripheral vision (the tumor was right near his vision center), and now the recurring small seizures where he gets confused (today the doc asked him what year it was and he said 2003).
I will definitely look into the Novocure; I had not heard about that.
My husband was a physicist and totally understood the science behind emf's. i think that's why it was so important to him to be in on that clinical trial, especially. I'm pretty sure it bought him a few months, anyway. His mantra was, "Where ther's life, there's hope.