PCI - One day at a time. (Day 9)

[SDianneB]

It's Friday!! YAY!! Happy dance ...

And only 3 more treatments to go!!

Today was a good ego day -- saw the doc, and he says I'm amazing! No headaches, just that constant mild pressure I feel. I went home early yesterday because I felt more "droopy" than usual, but after some rest and a good night's sleep, I woke up fresh and envigorated this a.m.! I really slept last night too -- was fighting sleep around 9:00 and finally gave it up and slept straight through until the alarm went off around 6:00 this a.m. Would have loved to have been able to throw the alarm clock on the floor and sleep some more!

So, today's rant is, I think about caregivers, since I read a thread on that yesterday. I must warn you -- I'm not very politically correct. I tend to just say what's on my mind. And if I offend someone, so be it. I really don't care, because it is ridiculous and unreasonable for total strangers to have any expectation of not being offended by every other person on the planet at some point, IMO. So, here goes.

I can't say I've been through this alone, because I haven't. But, when all is said and done, I live alone (well, I do have my sweet kitties that I couldn't do without) and it's up to me to take care of me. My sister lives next door, and is good for some things, but she's not very tough. The things she wants to do "for" me are really things that I think she does for herself. At first, I let her go with me to the doctor's appointments, but stopped that after a while. It became difficult, because she wanted to take control, and I didn't have time to ask what I wanted to know. So, I finally told her that she wasn't helpful to me in that way. Yes, her feelings were a little hurt, but I told her if she wanted to talk to the docs, she should just make her own appointment with them and have her own time, because I needed mine. And that was that.

As to food, her housemate brought me groceries a few times after I got home from the hospital, and they both helped with getting prescriptions filled. I appreciated that a great deal, but was glad to be able to do it on my own when I could.

As to friends? There was one friend who came to see me in the hospital, and then took me for my first visit to the Oncologist. After we had to wait 2 hours, I never felt right asking her to do that for me again, and didn't. Over time, she has more or less gone her own way though, as if I'm contagious or scary to her in some way, and I can't say that I blame her. Having sick friends can be a lot of trouble!

I guess what I'm trying to say is that caregivers can be wonderful things. But as Becky pointed out in the other thread, they can also hamper things at times, albeit unknowingly. It's probably just the human in us, fighting to be in control, and as long as I'm capable, I plan on being in control of my health care.

The companionship is probably the most important part of all this. I've lived alone just about my entire adult life, but am seldom ever "lonely," if that makes any sense. I know people who would just wilt away if they had to spend much time alone though.

There may come a time when I need one. I'm more than happy to BE one if needed, but I hope that can be sensitive to the needs of the other person more than what I think is "best" for them. I certainly wouldn't want to look a gift horse in the face if I needed help at some point, but would also want to make sure I had a real giver of care -- meaning giver of real time because they want to. That would be a real treasure.

Di

[ginnyde]

Dianne,

I like the day by day journal of your treatment. I am sure it is helping others who are undergoing PCI or who are considering it.

[J.C.]

Dianne,

I read each day, you are doing great.

You should collect all your days and put them together

in *My story* section, that would help people that need similar

treatment.

Go girl, go

J.C.

[Addie]

guess what I'm trying to say is that caregivers can be wonderful things. But as Becky pointed out in the other thread, they can also hamper things at times, albeit unknowingly. It's probably just the human in us, fighting to be in control, and as long as I'm capable, I plan on being in control of my health care.

The companionship is probably the most important part of all this. I've lived alone just about my entire adult life, but am seldom ever "lonely," if that makes any sense. I know people who would just wilt away if they had to spend much time alone though.

Maybe the key, Di....is that it depends on the "patient". Some people -perhaps most - want to be in control of their own care.....and some don't! Some appreciate that someone else will take the helm on such things.

Yes, I think companionship and empathy are most important. I too, am one that does fine being alone. In the winter months...I can hole in for several days at a time and I'm just fine as long as the t.v. works, I have books to read and some yarn to knit with! Still...it's nice to have someone to bounce your thoughts off of sometimes....isn't it?

My hubby has been my primary caregiver. On those 2-3 rare occasions when I got sick from chemo....he was a brick. Bringing me a tray with chicken noodle soup, saltines with butter and a glass of milk....my comfort foods. Keeping the dogs quiet so I could sleep off the nausea. He also drove me to and from every chemo, every radiation treatment. It wasn't so much that I couldn't drive myself...but I think he felt it was something tangible he could do and it would relieve me of having to park or worry about any of that.

That said...and acknowledging how much I appreciate all the efforts he has made...sometimes he just didn't 'get it', either....or his personal feelings about this "disruption" to our lives would get in the way of things.

I don't know that it's entirely possible for someone who's NOT been where we are....to fully understand what it is to be on the inside of a body with lung cancer....looking out. Does that make sense as I put it?

Now....again, having said THAT....let me also say that it's been far more of an eye opener to me, just how few friends have remained really constant throughout these last 6-7 months! Some of them act like I'm already dead....in that they never call. Never think to call and say, "Hey....are you up for lunch?"

I mean, cancer doesn't mean I don't EAT anymore, does it? Doesn't mean I cannot carry on a phone conversation OR one in person? Cancer doesn't mean I can't hear anymore....or feel.....or miss my friends treating me like I'm still ME, for crying out loud!

Truth? I've gotten more support out of cyberfriends and OLD friends who live thousands of miles away...than I have from people here, whom I thought were my friends. More interesting still.....is that it's been some of the guys from our golf club....or their wives who are NOT members, but whom I've met at social events....who have been most attentive since my diagnosis....sending cards or calling periodically!

A couple of the women who I considered my closest friends? Virtually never hear from them. Oh...if I walk into the golf club and they are there....they'll come up and ask how I am. But to ever pick up the phone to call???? Nope. Guess that takes too much effort.

Yeah...having cancer opens your eyes to a lot of things you don't anticipate, doesn't it?

Wanna know something else funny? Virtually 100% of the people I run into that didn't know about my diagnosis ASSUME I have breast cancer! It's like lung cancer really is invisible.

[SDianneB]

Addie -- nail/hammer/bang.

About a year ago, I watched a Nightline episode about a woman in her 60s who had end stage uterine cancer. At the time, a dear friend of ours had the same thing at age 84, and was in the hospital literally on her death bed.

This woman's doctor had a personal experience with cancer when his wife was diagnosed. He said it taught him about the need for a TEAM approach, so in his practice, he had incorporated counselors, surgeons, etc., so that each patient had benefit of all the opinions without having to go all over town to see different physicians in various specialties.

This woman was documenting the last days of her life in the hands of this wonderful doctor, and the issues she and her husband faced. Near the end, she made the decision to stop all the chemo and any kind of treatment other than pallliative.

While she was being interviewed, she looked great -- great hair, makeup, etc. Later, she took off the wig and makeup. She said that the hair/makeup look was her "living look," and taking it off was her "dying look." She said when she'd go to the grocery store and see someone she knew, they saw her living look. She said if they saw her dying look, they'd probably rush by her and try to avoid her at all cost.

The people who can and do stick by those of us who need them are truly amazing. Especially those who can put aside their own ego and let the patient drive most of the time.

I think of that woman's husband who loved to rub her bald head and tell her how much he loved her. Wow.

Not long after I started posting here, I read of Ginny and her Earl, and could just about feel the caring and love through the computer monitor. I never lost that feeling, and found it almost unbearable myself to think of Ginny losing her Earl. Ultimately, I guess that's what happens with a lot of caregivers -- they lose their person. But people like Ginny never really lose -- because just look at all she had, and what she still has of Earl (and always will) to keep with her.

Di