12-15-05 Cancer + 4,728
The days are a billion minutes long.
Wednesday 12-14-05 9a.m. e-mail from my sister said Mom took Dad back to the hospital on Tuesday afternoon. He was too weak again. He was delirious and halucinating.
The E.R. kept him all day. Fluids and breathing treatments.
They finally found a room for him at 1a.m.
Mom never sleeps anymore. It's a wonder she's not halucinating.
Dad sleeps. In between rants and insane desires to urinate (every thirty minutes, all day and night). I wonder now if Dad has any idea what is happening to him. Does he have any moments of clarity?
6:30 p.m. Wednesday 12-14-05 My sister called. She said "please call Mom. Aunt Donna called and said Mom's at home and she's just crying uncontrollably and I know Mom won't tell me what's going on." (My sister is the youngest and my parents tend to "protect her".) I assured her that Mom is very likely needing a good hard cry. She's tired and frustrated and I'm not at all surprised.
Of course, I called to check.
I was right. Mom just needed to go off about what is going on. Or not going on, as the case may be.
She told me Dad was seeing famous people in the house. (Lucious someone...used to be a boxer.) She told me things that I will never ever relate to another person out of respect for my father and of my own memories.
I listened and I did my best to console and to tell her she's doing all the right things.
Mom told me that she has finally reached a point where she wants answers and she will not shut up until she gets them.
Good. It's time that happen.
Mom and I both wonder where the hero is. I've heard so many stories of cancer victims telling about "that one nurse or doctor or therapist that motivated them to live and to fight". We've seen none of that. No one has even said "let's talk about this. Let me help you shoulder the burden. Let me reassure you." No heroes.
One of the "nurse practitioners" DID take the time to research the medicine that they had my father on (to regulate his heart so he could have surgery). Turns out there's a very remote possibility that it could cause: swelling, confusion, halucinations. Imagine that. The doctors SWORE that wasn't what was causing the problems.
He's off the meds.
THE NEW PLAN: is to start radiation to shrink the tumor. He wouldn't survive surgery. (He would have 3 months ago - but not anymore.)
It is presumed that the tumor is blocking his airway enough to cause this insane inability to breathe. Shortness of breath and all.
My mother told them that they HAVE TO TELL HER WHAT TO EXPECT! She said "When will we know if it's working? One treatment?"
They said "It will take about 5 months to shrink the tumor."
My mother screamed "THAT'S NOT GOOD ENOUGH. WE DON'T HAVE FIVE MONTHS LIKE THIS!"
Cancergiggles commented that cancer "is not about you. It is about all the people who care about you and care for you."
I really did think it was about Dad. Now I KNOW it's about all of us.
I'm going to lose my Dad.
No wishes are going to stop that. I'm done wishing.
Mom and I are just resigned to waiting, watching, and hoping he will have a few moments of mental clarity to realize we are here and that we love him.
I should be there. But I don't know how.
Wednesday 12-14-05 9a.m. e-mail from my sister said Mom took Dad back to the hospital on Tuesday afternoon. He was too weak again. He was delirious and halucinating.
The E.R. kept him all day. Fluids and breathing treatments.
They finally found a room for him at 1a.m.
Mom never sleeps anymore. It's a wonder she's not halucinating.
Dad sleeps. In between rants and insane desires to urinate (every thirty minutes, all day and night). I wonder now if Dad has any idea what is happening to him. Does he have any moments of clarity?
6:30 p.m. Wednesday 12-14-05 My sister called. She said "please call Mom. Aunt Donna called and said Mom's at home and she's just crying uncontrollably and I know Mom won't tell me what's going on." (My sister is the youngest and my parents tend to "protect her".) I assured her that Mom is very likely needing a good hard cry. She's tired and frustrated and I'm not at all surprised.
Of course, I called to check.
I was right. Mom just needed to go off about what is going on. Or not going on, as the case may be.
She told me Dad was seeing famous people in the house. (Lucious someone...used to be a boxer.) She told me things that I will never ever relate to another person out of respect for my father and of my own memories.
I listened and I did my best to console and to tell her she's doing all the right things.
Mom told me that she has finally reached a point where she wants answers and she will not shut up until she gets them.
Good. It's time that happen.
Mom and I both wonder where the hero is. I've heard so many stories of cancer victims telling about "that one nurse or doctor or therapist that motivated them to live and to fight". We've seen none of that. No one has even said "let's talk about this. Let me help you shoulder the burden. Let me reassure you." No heroes.
One of the "nurse practitioners" DID take the time to research the medicine that they had my father on (to regulate his heart so he could have surgery). Turns out there's a very remote possibility that it could cause: swelling, confusion, halucinations. Imagine that. The doctors SWORE that wasn't what was causing the problems.
He's off the meds.
THE NEW PLAN: is to start radiation to shrink the tumor. He wouldn't survive surgery. (He would have 3 months ago - but not anymore.)
It is presumed that the tumor is blocking his airway enough to cause this insane inability to breathe. Shortness of breath and all.
My mother told them that they HAVE TO TELL HER WHAT TO EXPECT! She said "When will we know if it's working? One treatment?"
They said "It will take about 5 months to shrink the tumor."
My mother screamed "THAT'S NOT GOOD ENOUGH. WE DON'T HAVE FIVE MONTHS LIKE THIS!"
Cancergiggles commented that cancer "is not about you. It is about all the people who care about you and care for you."
I really did think it was about Dad. Now I KNOW it's about all of us.
I'm going to lose my Dad.
No wishes are going to stop that. I'm done wishing.
Mom and I are just resigned to waiting, watching, and hoping he will have a few moments of mental clarity to realize we are here and that we love him.
I should be there. But I don't know how.
posted by Agnes at 4:49 AM
4 Comments:
Bear hug,
x
Sheesh, what's wrong with these people???
They haven't offered any of you a therapist or anything?
It doesn't surprise me though. Docs and therapists have never been connected within the healthcare, even if they've become better these days to understand that it should all be under the same roof.
And there's nothing you can really do, Agnes. Which is probably the worst part of it all at this stage. I've been in both camps - both as family where you are right now (but as a kid) and been sick myself - and yes, it's about everyone around you. It involved the complete family in a way that nothing else would ever do.
The only thing you can do at a time like this is to be there for your mom more than anything. Your dad is beyond your reach, sorry to say, but your mom is still there. And your siblings of course.
My mom was beyond this reality for about 3 months before she took her last breath, and she didn't even remember any of us in the end. It's painful for everyone when your loved ones turn into strangers like that, because that is what is happening. Cancer is changing more than just the cell structure under the surface. If it goes too far it will also change how you respond and a lot of other things.
If you want to talk to someone Agnes, you are always welcome to send me your number and I can call you. There are few things that has to do with cancer that I haven't seen or heard of, and if nothing else I can do what I did for a lot of both patients and their families on my mailinglist - listen and understand.
It's up to you, but that is always an option :hugs:
In any case, please don't stop writing about this even if you feel like stepping back and resign because there's nothing you can do. Believe it or not, but this will be a log of events that will look differently later on.
Hugs'n'love,
Christa
Autumn...all bear hugs accepted and wholly returned. The long kind where you don't let go until you feel somehow "healed". :)
Tracey, so much love to you for always taking the time. I know you're so busy...but there you are still.
I believe that you are right. I will KNOW when I need to flee to Houston. I will KNOW when only one thing matters.
(and yet...there is one tiny inkling of doubt repeating "What if you wait too long. What if you're too late?)
Christa - You are the most generous and kind person on two continents. :)
There is so much solace derived from your words...knowing that they come from your own experience.
I'm inclined to give you my number just because I'm curious to hear what I know is a beautiful accent. ;)
Still...not just yet. Besides, I don't think I could dare to cost you the long distance with all that is (or isn't) going on in your world.
I will re-read your comments here a thousand times and get a glimmer of new meaning each time my own perspective changes.
Thank you for your words, your heart, your hope.
Love and luck to you and Robin.
If yer fishing for a Swedish accent, I'm afraid you would be disappointed, Agnes. I was in LA for 8 years and I've never had a broken English...lol
As for phone rates around here, it doesn't cost me more than a long distance call would do. Since I have my son in Sweden, we set up the phone with BT so I can call abroad very cheap ;)
It's up to you, but shoot me an email with that number when you feel like it :hugs: The offer still stands.
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