One patient with glioblastoma still alive nine years later
by karynk on Sun Sep 30, 2012 02:38 AM
Following the hubby's bilateral PE's last weekend, we can to the conclusion that we needed to move forward with hospice at this time.
We are in a very grey area here, the popular opinion is that some other acute medical problem is going to get him before the BT does at this point.
He and I are both on "timeouts" for the weekend by the hospice physicians request, so they can try to figure out what the baseline is for him at this point in time. And I can get rested up for whatever next comes down the pipeline.
Although I have been an emotional mess this week, today I'm good. Oddly really good, that I kind of wonder about it myself. He was moved to a brand new hospice facility on Thursday night (it's not even completely opened yet.) It wonderful! Right next to the hotel we spent our honeymoon at 3 yrs ago. He's been resting, adjusting, enjoying an outdoor view, and getting some much needed comfort and quiet!
We are back to smiles and "I love you's" again. I sat with him for a few hours tonight, just playing some of his favorite music, sitting in a dimly lit room holding his hand, and watching him sleep - really sleep.
On side note - always, always review med lists at new facilities!!! Somehow Mr. Seizure-rific's Keppra got dropped from his list of meds. Talk about giving me a heart attack!!!
by HubbyhasGBM on Sun Sep 30, 2012 02:49 AM
Hey Karyn - glad you are getting some relief, and some good music and rest. My heart goes out to you. I'm also glad you got into the new hospice unit. I hope it is all you hope.
by karynk on Sun Sep 30, 2012 02:57 AM
Thanks! I know you and me are neck and neck at this point. Where a month ago, we both weren't sure what was going to happen. We will get through this stage....
Remember - tropical island...man servants;)
I already know someone will take the above statement wrong!
by HubbyhasGBM on Sun Sep 30, 2012 03:10 AM
Hahaha. Yes, you've been battling it longer, but we are neck and neck now. I ache for you. I'm getting a rare weekend "off." My daughter took my husband to visit his family. It was/is quite tense due to his condition, but I am THRILLED to say that so far, it is going well. My son came to decompress me. We went swimming at a hot springs today and it was truly exhilarating to do something we all used to do routinely, but haven't been able to do for nearly a year! It was my own version of the tropical island! I hope you find one that works as well for you!
by karynk on Sun Sep 30, 2012 03:40 AM
Oh how blissful!
I'm just lucky that my Mom worked for this hospice organization for 11 yrs. They loved her, and will in turn do anything they can for me and my hubby.
I'll find that island soon enough. In the mean time I spent sometime doing my own thing today:) I do have that escape since he has a crew to attend to him 24/7. He will most likely stay inpatient for the remaining days, as I can't do this solo and we are poorer than poor.
by BillsBeembo on Mon Oct 01, 2012 12:12 AM
Karynk & HubbyhasGBM,
We 3 are on the same page now, as we too brought in hospice this week. My heart breaks for you both, us all, everyone fighting this crap!
All was mostly "normal" on Monday, except 8-9 hours between RR visits, plus, "legs hurt", and "I don't think I can stand".
Tues. morning, incontinence, head flushed so red, that I thought he must have had a BROILING fever - after using my thermometer and those of 2 neighbors, nope, perfectly normal. UTI thought the NO? Sent home health to draw labs.
All back negative for everything. Has more clarity, normal color now, but he's now bedridden, using Depends, fun things like that...
Still in shock at just how freakin' fast things changed!!!
He now has the same hospice team that he had in Dec. 2011, while we were waiting to see if Avastin worked. They were surprised that he was still here, coming from where he was at the time.
I too am ok today, just tired, but was a sleepless, super emotional, angry, fearful mess all week. Phone calls, texts, emails, FB posts, relatives who've only shown up 3x in over a year yet drop in, then make very rude and very ignorant comments, etc. Umm hmm....
It's comforting to know that there will be volunteers, bath aides, helpers, where up until now, I've been it. No worries about falls, about standing on the front porch for 2-3 mins. without worry, doesn't seem real.....
Tried to tell myself that I'm prepared, but not so sure now, since I'm feeling more like a wife vs. sole workhorse caregiver, which I'd truly forgotten.
I'll join you on that beach Karynk : )
by karynk on Mon Oct 01, 2012 01:38 AM
I think we need to find a bigger island ladies!
That feeling of being a wife again, I had that today! Someone finally was able to take some oatmeal orally again. And to think they all thought I was crazy when I told them, "give him a chance to try to eat." I got nice smiles, lots and lots of kisses, and someone is starting to catch up on his sleep a bit.
BB - hang in there! The 3 of us will get through this. Things change so quickly, and the shock and anger just make you want to scream. I am so glad that you are getting help in this as well. We are back with the same hospice from 2 years ago. Funny how these things work out. Take a little time for you, promise me that. I did this weekend, and it helped to get to the place I need to be, to be strong for him, and that he knows that I am strong for me too. As for people that show up that you haven't seen in years....yeah I get some of those too....and well I simply tell them too bad. But that's me, and I know that is not what everyone would do.
by vwxyz on Mon Oct 01, 2012 06:44 PM
You have been so supportive to all on this board.
Sending prayers for God to touch your husband with His healing hand. Jan
by karynk on Tue Oct 02, 2012 12:48 PM
Thank you for such kind words Jan!
Brain Tumors haven't heard the last from ME yet :)
by niallsmum on Tue Oct 02, 2012 05:42 PM
I too am neck and neck with yourself and the other ladies!! My son is going into hospice tomorrow, after a three and a half year battle with bloody rotten gbm. I am too tired to even type his story so far. Suffice to say that he, and we (his Mum, Dad and sister) are worn out. Still, we hope to have him for a while longer.
Do I qualify for the tropical island and man servants? Please say "yes"
And so we soldier on.............................................................
God bless all,
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