Voicelessness and Emotional Survival > Voicelessness and Emotional Survival Message Board

The new normal

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Twoapenny:
Thinking of you and your family, Deb, at such a difficult time xx

sKePTiKal:

--- Quote ---A nightmare, Deb.  Your ability to cope must come and go, and I'd want to be at home every chance, like you, trying to feel safe, and normal, and somehow find some equilibrium to carry me through.
--- End quote ---

Yep; Lighter boiled down what I was babbling around, trying to spit out. I kept trying to find a "normal" routine... in spite of knowing that any minute there could be another change - or demand from the docs - that was just beyond my or Mike's ability to comply with because we were so exhausted. It got to where to get him to another last-ditch treatment sounded like it would do both of us in... and no one would or could speak in terms of probability of success/improvement... so let's just go through surgery one more time, because it's all we can think of to do.

A patient's expectation, is that going through a painful or intrustive medical process or enduring the side-effects of certain drugs is going to be worth it, due to relief of the underlying issue. That there is recovery at the end of the long process. People will put up with and go through a lot if there is a belief that all will be well in the end. So, it makes no sense to someone like me to sell those processes & Rx's right along with a false hope, when the odds - in all honesty - aren't that good. But if the odds AREN'T good, and people are being honest and truthful and forthcoming with information... if there's any survival instinct or will to live in a person... they can (and often do) overcome the odds.

These days, that information seems to not be allowed to the patient or their family - HIPAA you know. I had a cancer doc come at me with both feet as if a) I had no right to speak or ask questions and b) I couldn't possibly understand unless he put it in 5 yr old terms. LOL... I think he still had hair on his head when I was done with him. It was like Mike was his prisoner and I no standing whatsoever to even be interested in his treatment, prognosis or care.

Dr. Richard Grossman:
Hi Debkor,

I just wanted to say that you, your husband, and your children are in my thoughts…

Richard

debkor:
Thanks Hops, You're a lovely person and I love how you write.

Thank you Dr. G

Thanks Bones

TT Thank you and I live the verse!! Wrote it down

Amber and Lighter

I experienced the screw ups with communications on VNA's and Therapy. Oh they all called and they were all coming BUT it would have been for coffee and donuts with me ....hubby was in the hospital!!
Geesh!

When he came out...3 weeks later they called ...Do you need services? 
Nope.

The oncologist (now) is referring fir a speech therapist.
Everything else I'm doing and I found a good balance.

My hubby can take care of himself. He walks and can shower. He can do his own feed too.
Sometimes he very tired. I do a lot of them.

According to him. He's FINE!!  Everything is FINE!

Having cancer, FINE!  He'll beat it

That's all he knows about the cancer. He has no interest in what kind, statics (which) we don't put in stone, and that it will show up again. It's aggressive. When and where it shows up, don't know.
I'm glad it doesn't bother him.

Depression :  At times. About: The peg tube. He wants to eat.
                                      He's bored
                                      He wants to work

I go out but not for a day. He is not Fine!  Not now and not yet

Things go through my mind and Yes it includes "Worse Case".  I have to address it.
Will there be a time "Hospice"? Possibly.
But not today

One day at a time.

He has no pain. The only meds he is on is for acid reflux and a steroid.  His cognitive thinking?  Seems like struggles at times with some things.

I get my dips/even take a dive (started yesterday). I come back up for air though and recover. That I think is normal.
There is a change. He looks so weak. So thin. So tired. So broken. THAT BOTHERS ME!!  That upsets me so much. 

He was loosing sometimes 4lbs in 4 days. His formular was changed to higher calories.
He is at least maintaing weight now. Hopefully he will start gaining.

Guilt? I've had it when I went to buy him new pj pants and shirts. I bought my self 2 cases of Keurig coffee and really good ones. And on top of it I used his charge! 
Now normally I wouldn't give it a thought. Only under the circumstances I felt shellfish with thinking of my self.
He can't drink or eat. And he loves coffee.
But I'm drinking and enjoying the coffee, lol

Another time was when I stayed home one day from the hospital.  I could barely tie my shoes, I was exhausted. My family went so he was not alone.
I'm not super woman. My body let me know that.

There's not much more that can be done. He couldn't handle another surgery.
It seems to me that his treatment ..like in football (Is a Hail Mary).

He has small cell lung cancer (mets) to brain ...stage 4. 
85% are smokers. He's also a welder since 19 years old.

But there is laughter. And sometimes it just feels good to do whatever!! You want to Howl at the Moon!!  Do it!

BTW I forgot to tell you. The oncologist 1st one that  turned out to be so very human...Asked me if I liked to dance after he apologized. I was one sad hot mess. I said, I do. And next thing he took my hand was doing the tango. Then we did Greek dancing and ended with the hustle. I was laughing (the staffs) faces were priceless...as we danced by...laughing is so healing.

lighter:
Ah, Deb....

The laughter can get you through.

We laughed and laughed with my Mom.... so much fun.  So many opportunities if we don't let negative, sad thoughts get in the way.  Well, that has to happen some of the time, but letting the laughter in is better, IME.

When we can, we should seize our moments, howl, and dance..... you're right.

Lighter

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