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Questions for survivors...


KatieB

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Hi Katie. I will bite and good for you for getting some helpful questions going. I do not actually consider myself to be in the care of anyone. Support yes, but not necessarily care and I hope the care part only comes in my old age! The support part I also consider to be not only for me, but more importantly sometimes for my kids and husband.

But the support I need from loved ones, colleagues and friends is first and foremost the following. Please treat me as the same person I was before this horrible diagnosis. And to keep in contact with me throughout my journey. I think I have made that easier for all as I have been very open and proactive in communicating just that. And that it is okay to talk about my cancer as that is now a part of who I am, but certainly by a long shot, not all. And for the most part, people do treat me very well.

Secondly, I expect those family and friends that are close to me to ask me what support I could use. I rarely ask anybody for anything. But I am very appreciative and thankful when I am asked and most of the time the response is nothing as I am doing fine. But when they ask and I actually am smart enough to suggest something (which I should do more often perhaps), then to actually follow through with that support.

Pretty simple really.

Oh yeah... I actually really don't mind being asked out for dinner or any fun social engagement! But that was true before all this happened as well!

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Larry and I agree with Sandra. Larry thrives when he has company. Too many old friends don't come around anymore.

Offer to come pick him up for an outing. (He's not allowed to drive anymore.) He's always ready to go out for a meal, and is more than happy to pick up the tab. :D:wink: And if the wife says "No, thanks. Go have a nice time", don't badger her. Maybe she needs a little down time.

If you want to come over for a visit, call first, unless you are willing to hang out with the wife. Larry may be sleeping. And if you are willing to hang out with the wife, ask her how she is doing. If she unloads some nasty baggage on you, don't hold it against her. She's probably just blowing off a little steam. It will allow her to start it all again tomorrow.

If you say you are going to do a certain thing, follow through. Larry might be counting on it. But don't be upset if he just doesn't have the energy. Keep things liquid.

The main thing to remember: Whether the patient is an INvalid or not, they are not inVALid. Keep in touch.

It may be uncomfortable for you, but the MOST VALUABLE thing you can do is KEEP IN TOUCH!

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"KatieB" What do you wish your caregiver's would do for you to help make your cancer journey/fight easier ?

I only use paid caregivers (CNAs); i.e., I don't want my family and friends caring for me physically, either now or at the end. Instead, I want them (family and friends) to be there for me in every other way, ergo, supportive, loving, caring, etc.

I have been fortunate in that--so far--most of my family and friends have continued to maintain contact with me--visiting from both near and far, telephone calls, emails, etc.

From the start, however, I have been "openly realistic" about my odds of survival, and this openness has been uncomfortable for some, but most have accepted my attitude as being no different than they would expect from me :D so very few have drifted away.

Carole

Life is a Terminal Condition

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Thanks, hinj.

I consider myself very fortunate in my response to my diagnosis. I am told by my health care professionals that the majority of lung cancer patients go into either depression or denial--both of which I consider to be a waste of time I don't have.

Instead, I have tried to balance my remaining time--no matter how short or long--with the emphasis on quality. If you've read "My story" (see link below), then you know that included several "memory trips" last year, all of which caused me physical problems afterward, but worth every minute!

Actually, speaking of going out to dinner :), I spent last Sunday afternoon in ER being diagnosed with pneumonia, followed by an hour long antibiotic IV. I convinced the ER doc and my palliative care doc to let me go home, whereupon I rested for a couple of hours, then dressed and went out to dinner (Italian) with two cousins.

During dinner, my supplemental oxygen needs dropped from 3 liters to 2 liters (normal of late has been one liter) and my temperature dropped 1.6 degrees!

Now that's the kind of support I want from my family and friends! :lol:

Carole

Life is a Terminal Condition

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