Stupid Guest Tricks

If you guys could only see the tears of gratitude running down my face while reading your posts. I swear I can feel your support, and it means so much. A million thanks on behalf of my whole family for your hugs, thoughts, and prayers.

Yes, Wazz has it right, part of me is very angry every time another doctor says "If only you'd come in a year ago." because my husband, daughter and I tried so hard to convince him he needed to go in. Everyone in the family knows it- including my mother whom I hold equally responsible that he didn't seek treatment because she kept saying there was 'nothing wrong with him' and that he was 'faking' the wheezing that was actually coming from his throat being obstructed!!!!!!!!! But I have never let that anger show to my dad, it's something we only vent at home, after we've left his bedside. While I'm there I put on my bravest face and try to keep him calm and encouraged. But it sucks that if he had done something sooner, he likely at least wouldn't have the trach now.

I haven't been to the hospital today- was not feeling well enough to take a cab alone after the hell on earth I experienced yesterday. My husband is totally exhausted he's done nothing but run around for the past 8 days solid so I told Dad's nurse to tell Dad we probably won't make it in tonight. They have already moved him back to a regular room (which is WRONG! He lost a lot of blood yesterday and they just dropped him out of the ICU just like that. I argued my best case with the nurses and doctors last night but as I said, this hospital is not the one I'd choose to get a splinter removed in. They don't care.)

The talk with the oncologist was enlightening (the definitive diagnosis so far is squamous cell carcinoma) though they won't stage the cancer until they know more about what the rest of his body looks like, or give a timeline/prognosis.

Today he is having the CT of his abdomen, and they want him to have a bone scan too. they want to biopsy the nodes (though the oncologist slipped last night and called at least one of them a 'mass' which to me says a LOT- as does its location- one near his lung on the same side as the throat tumor, and at least one "very near his heart") but the problem is that it will be risky and with his blood loss already- ugh ugh ugh. It just gets more frustrating and I just do not want the man to suffer. The thought he can't eat- my father went hungry many times as a child, and food is a major source of joy to him- the idea of him being unable to eat is torturing the whole family.

This is a guy who has been the cavalry for everyone in his life- anytime there was trouble, you just call Bill and he shows up. Well who is the cavalry when the cavalry is in trouble? Turned out it was only me, my husband, my younger brother and one brother in law. No one else showed up for the surgery or since, including my own mother!!! *banging head against wall* Though it's probably better for the staff and my dad's elevated BP if she's not there.

Will keep you guys posted as we go...my father is already telling me he doesn't want treatment to 'prolong his death' but now that he has the trach I know whatever happens this could take awhile.

Or, he could bleed again like he did yesterday, suddenly and without warning and that could be the end right there.

I just pray that no one has to ever go through what i went through yesterday- it will undoubtedly go down as one of the worst days in my entire life.

Your support is so appreciated, I can't even begin to tell you...

rambling I know, sorry about that have to pull myself together, get the bills written out...everyday things that seem so useless and mundane when the clock may be running out on the life of someone you love.

But still they are things that have to be done. My daughter has been at her Dad's the past week while we dealt with this and I miss her something awful too- that's the absolute hardest part of this. Whatever my relationship with my father has or hasn't been- she believes that he walks on water and the feeling is mutual. She will, I believe, suffer the most from all of this.

It's so hard to watch your children suffer loss -harder than feeling it yourself I think. She's only twelve. I don't know what to do for her.

I'll check in again soon.

Love to all,
Bru

Bru, please accept my deepest sympathies to you for your dad. It's okay to come here and 'ramble"--stream-of-consciousness thinking tends to pop up during times like these. You need to take time for yourself. As to your daughter, I suggest you sit with her and let her express herself, her feelings about this. Keep a journal, if you don't already. It might be a good idea to get a journal for her and let her write down her deepest thoughts and feelings. Just be a listener to your daughter, and answer her questions honestly. You might want to talk about favorite memories about dad/grandpa.
Tripod sends purrs and one-legged hugs ;) , and I send prayers that things will work out for the best. I've had two relatives who were told by their doctors for years that they had some other condition--an aunt on my dad's side was told she had arthritis in her hips/spine, and one of my mom's brothers was told he had low-grade leukemia. Both turned out to have cancer; my aunt found out too late to get help (this was in the mid-70s to mid-80s), my uncle had a colostomy done, but it was Stage 4 when they found it, and though it gave him more time, he still shrank away as the cancer won. He passed away on Christmas 2006.

Right now, I'm watching my mom shrink away from COPD and two abdominal aortic aneurysms; the smog and heat are hitting her hard, plus she hasn't had much of an appetite. She went to the doctor yesterday, and she's down to 107 pounds, at 5'6". Sometimes she feels hungry, eats, then after a couple of bites she feels sick. My sister got her a couple of bottles of Ensure, but she really doesn't like it. If it turns out mom has something like stomach cancer I'm gonna be pissed. Mom tried to stop smoking in the 70s but didn't stick with it; it wasn't until she was diagnosed with COPD five years ago that she quit cold turkey. If she'd been able to quit 35 years ago, she'd be okay. That really pisses me off that some people won't take commonsense care of themselves.
When I had shingles on the right side of my face a few months ago, mom refused to let me go to a doctor for antiviral medicine. What if something had happened to my right eye, which was affected? I need new glasses, so maybe I'll see if anything permanent happened; my vision seems to have declined a bit. I'm not happy mom is making me change eye doctors just because mine is in a new office that's in a "bad" neighborhood.

I'd better let you go; you need your rest.

Felinefan, sounds like your mom and my mom are cut from the same cloth! Mine kept saying that my dad either didn't need doctors or that doctors would 'make him worse' and she insisted he had a cold or sinus trouble.

Of course she says that I never had a stroke and that my balance problems are from 'swimmers ear'

Saw dad last night he was breathing well with the trach on room air (whew) and actually eating pureed food for the first time in almost a week without food (whew) he was so happy about that eating is a joy to him. His weight is healthy still- but his first oncologist has 'walked off' because dad refused invasive (would be difficult and cost a lot of blood) surgery to test the lymph masses in his chest. They did the abdominal ct waiting for results might get those today when we see him but if not I won't be to the hospital for a couple days have my daughter finally coming home tonight and we need to regroup. Dad says he is getting great care (the nurses on the third floor were way better than ICU and the guy in the next bed has to have 24 hour supervision so my dad has someone literally watching over him at all times at least for now) he was down to the one IV too.

So, yesterday was a 'good' day and hoping for another- that would be a day where he can eat something, breathe, and not bleed at all. Hopefully today is another of those days we'll find out.

He's given up, and says he doesn't want treatment at all, except maybe just some radiation to try to shrink the throat tumor so he can eat better and maybe lose the trach. He's counting his time down- and it's frustrating the doctors immensely.

thanks again for listening, and it is a good idea I need to start journaling again, and yes my daughter does keep one and it's private- we don't snoop- so she can express her thoughts. Thanks for the reminder to tell her it's okay to do so.

got to run for now. love and thanks to all,
Bru

I'm so sorry - you and your family are in my thoughts and prayers. I'm a cancer patient's daughter as well, and understand completely. Sending you wishes for strength and serenity.

One Day at a Time, Bru, this must be so overwhelming!
You know, it is very hard to hear that your Dad doesn't want every possible thing done, but he may change his mind if he is feeling better.
He may also not.
I hope the Oncologist and you can sit down and have a conference about all the options to improve his comfort. If you approach your Dad with, "This treatment will increase the time you feel 'better' (hopefully pain free), maybe he'll look at the treatment more positively.
My hopes to all of you.

Ladyfair wrote:I'm so sorry - you and your family are in my thoughts and prayers. I'm a cancer patient's daughter as well, and understand completely. Sending you wishes for strength and serenity.

Ladyfair (love your name btw!) I'm so sorry to hear that your parent is suffering from this horrible disease as well. I know that lots of people have walked this path before us and can likely offer us some encouragement and advice (as well as folks like Disneymom who are in the medical profession) please feel free to vent your frustrations here in this thread too if it'll help.

Sending big hugs and hopes for peace and calm to you too! (hug)

Disneymom, I talked to the oncologist very briefly yesterday and while my dad hasn't outright vetoed all treatment (such as palliative care as you suggested to increase his comfort) but I'm worried we won't get that far. He was doing so well on Saturday but last night was worse. I won't gross everybody out with the medical stuff but my husband and I were both queasy and upset when we left the hospital (and I'm pretty good at handling this stuff, and hubby does okay with it usually) he's already saying goodbye to everyone and saying that his faith is what he's relying on, and he's rapidly cutting off their options by refusing further invasive testing, etc. He kept saying the room felt hot and it was not warm in there at all I think he's got infection setting in.

They can't even really stage his cancer without knowing what those masses in his chest are. It is frustrating the doctors and myself but I know most of all his refusal is going to upset my daughter.

To top it off, when we got back to the house to drop my brother off, my mother was going on and on about how she doesn't want to take care of my dad or, get this, even cook for him 'if' he comes home! My husband was so livid he couldn't even speak. My father supported this woman like a queen and she's never worked a day outside the home since 1962. And she's complaining that she should be able to 'retire' and not do for anyone? I said "you don't retire from marriage, mom!" :mad: :mad: :mad: :mad: :mad:

Their marriage has been toxic since before I was born- but they won't ever put the cause of death when he dies as "should've gotten a divorce back in the seventies." They were separated for a year or more at two points, she went so far as to file once but when she realized she might have to, oh get a JOB she decided to stay and make everyone miserable instead.

So with all this going on, I have to take a huge step back now for my own health. I'm very run down at this point and there is nothing I can do if everyone is refusing to cooperate with the doctors on all sides.

My daughter came home last night after being gone 8 days and I missed her so much! We're watching the Jonas Brothers stuff from tv I've recorded for her the past week and sharing a lot of hugs.

I was up all night with graphic flashbacks of the things I've seen in the past 10 days.

this just sucks, but my father has chosen this and there is nothing I can do...and you know, I have three siblings who are able bodied, have no children to care for and can just get in gear and do more then they've been doing. I'm only one human being.

thanks for listening. I know there's nothing you guys can do or say but just knowing you're hearing helps more than you'll ever know.

hugs and love to all
Bru

She sounds a lot like my mother-in-law. No doctors, retired, etc. Your husband should have unloaded on her. I have on mine. It was a great experience for me and my wife still talks about it.

Bru, I encourage you to continue to get all of this off your chest with your husband and us, if you want. It is good if you can step back and review everything like you just did, while preserving your sanity, for this must feel like an insane situation.
I think all your background with your own health issues is enabling you to deal with this with A LOT more knowledge than the rest of your family (I'm assuming). They sound unable to cope with all this. Of course, that does not make it OK or better, but sometimes we have to deal with the unfortunate situation of our families being well, disappointing.
Once again, I'm so sorry, but I do think that your Father is lucky to have such a caring and concerned daughter. Please keep up your strength for whatever will happen, and have the comfort from knowing you did your best in this awful situation.

Like DisneyMom says, Bru, you do what you can do or feel you have to do, and then step back and try to realize that's all you can do. You can't change your parents or your siblings, or make up for all those years of family dysfunction.
You need some peace and harmony in your life, as obviously your health has suffered not only from physical problems but emotional conflict as well. You are such a caring person and generous person and I hate to hear of you suffering like this. I'm sorry your Dad's condition is so serious and your Mom is giving you fits (whatever happened to "in sickness and in health" as part of the marriage vows??).
We're here for you when you need to vent.

Bru, here's where your mom and my mom are most definately not cut from the same cloth, as you said. Mom has been a hard worker all her life--coming from a poor family, born during the worst part of the Depression, she had no choice but to work for everything. If my mom heard about your mom being a "princess" who was too proud to get a job, my mom would wring your mom's neck. And my parents did get a divorce in the mid-70s, but for different reasons. Mom started working again about a year before she and dad split. Long story on reason. People who think they don't need to work really burn my toast. My mom worked sometimes two jobs at once, and she was still in high school! I come from a long line of impoverished, yet mostly hard-working people, on both sides. I completely do not understand the mindset of someone who feels that work is beneath them.