Barbara Bush

[anrean]

I cannot help but bring up the reality that we all should have "the conversation" with our family and care takers as to what we want and expect - this is true for those who aren't ill as equally as for those who are ill. It is hard to start, and many don't want to think of it, but as a former and current care taker as well as a patient, I can tell you first hand that people have very different wishes and it is important to share what you want regardless of how uncomfortable the discussion is. Writing it down in a Living Will and Advanced Care Directive leaves no questions for those who have to tell the doctors of your wishes!

[Ncpoet]

Anrean,

I did a living will and health power of attorney years before I knew I had cancer. That is a difficult topic to discuss but one that needs to be done. In doing this, you are not saying you are going to die. You can maintain your survivor status. You are just protecting yourself and loved ones when the time does come when you are age 100, in an accident, or whatever circumstances lead to your eventual death. The main thing is it is an empowerment, you are in control of how you want things done and it relieves your loved ones of wondering if they have done right by you.

Thanks for bringing this up,

Judy

[Feelingblessed2013]

Thank you for broaching the subject.

In November 2012 I had surgery for diverticulitis, sprung a leak, turned septic, and almost died. Six months later I was diagnosed with stage 2 lung cancer and lost a lobe because of it. I already had a heath care proxy, but that was it. I now have a living will, I am arranging to have my body donated to our local medical hospital as soon as I am done using it. Papers have been filled out, signed, and sent. Now that I am facing another lung cancer surgery, my PCP gave me a MOLST form to fill out (Medical orders for life-sustaining treatment). He told me to show it to the hospital before surgery. He said they will make and keep a copy, I keep the original. I am then supposed to put it somewhere near my front door for emergency personnel to see in case I am unable to speak.

I have to admit, I thought I was good with all this, but that form had me a bit freaked out.

[JeanE41]

You are right on with this advice. I did it prior to my lobectomy knowing what a serious operation it is and at 73 not knowing how I would do. My children know my wishes, but this takes the responsibility away from them in case I'm in a position of not being to express my wishes. I came through it fine and now those papers are on file at my doctor's office as well as my hospital. It gives me peace of mind.

[anrean in reply to JeanE41]

Thank you. I did it back in 1988 when I fractured my back - I was only 30, but knew from being caretaker for my granny and making decisions for her - fortunately I knew what she wanted - was so much easier. She and my mother are polar opposites in what they want, and it is not up to me to do my own thing. Unfortunately had to go behind rest of family's backs to get what SHE wanted. When the time came, doc made sure her wishes were granted. Unfortunate situation because they wanted what they would do, and she wanted something totally different.

Very hard conversation, and very important to put in writing! Back then there was no Living Will, so glad we now have it so that our wishes are in writing and people cannot do what they would do for themselves.

Keep in mid that it CAN be changed. Somewhere in this journey of 5 cancers I did change mine! You are not stuck with a single time of making the decisions. It is important to think carefully and pick a person who will follow your wishes. As Health Care Proxy and Power of Attorney for my best friend, she did not have a Living Will, but since she was my support through this cancer journey, we had many conversations about what each of us would do. I was very fortunate that her husband knew clearly what her wishes were! When the time came, as agonizing as it was, knowing her wishes made making the decision 100% easier!

[FtB_Peggy]

Very serious, very necessary discussion. You are all spot-on. I did mine many years ago, and take a look at them every so often to see if there is something I want to change. Thank you!

[Denzie Moderator Volunteer]

My favorite story here. Second visit to my oncologist he walked in to my cousin and I laughing. He was stern and said he didn’t think we listened to him when he had explained the gravity of my situation. I responded that I did. He told me I had 10-15 months maybe. So I went and set up my Powers of Attorney, made my wishes known in detail to my family, paid for my cremation and planned and paid for my memorial service. With that I was done with the dying stuff and focused on living.

[anrean in reply to Denzie]

And look at you now! How many years has it been???

As an aside, why do doctors presume we don't understand just because we don't do the hysterics and gnashing of teeth? I went through something similar and it took a couple months for the doctor to realize that I did understand, I just wasn't going to do the hysterics because it is not part of my basic personality. By the time they tell me I have cancer, I'm already looking forward to what has to be done to get rid of it!

[Denzie Moderator Volunteer in reply to anrean]

You’ve been through this 5 times now? They should know what you’re going to come out looking for the best possible course of treatment.

When I got my breast cancer diagnosis I felt like ‘Okay, you couldn’t kill me off with the stage four lung cancer I’m not going to survive something with the lowest survival rate only to succumb to one of the most treatable cancers. The irony was greatest when my dr told me I could only be on the Tamoxifen for TEN YEARS after giving me TEN MONTHS for the lung.

[anrean in reply to Denzie]

Thanks for the giggle - I love the irony. At Roswell Comprehensive Cancer Center you get a new oncologist for each type of cancer - that way you get the experts in your field. One of my funny stories is on the 2nd breast cancer Karen could not turn and look at me so I told her it was cancer and said "Let's cut to the chase - how do we get rid of it?" She turned around and her eyes were full - that was cancer #4. Having a new oncologist for each type means teaching each new doc how I react. In a way it is hard to keep switching docs - right now I have one for the lung ca and one for the tumor on my vocal chords. along with the same one for mammograms and the ovarian. The liver doc retired, so it sort of fell through the cracks. but it has been 16 years so I presume it won't come back I had to tell the lung doc that he couldn't scare me, and yet he withheld info for 4 meetings until I went for the 3rd opinion - now he realizes that I do understand and is more forthright with info. The only time I have actually cried is when a mammogram came back questionable and they wanted to do it again right away - that was before the 2nd cancer, and doing it again scared me - those things hurt! I just don't do the panic and hysterics - instead listen carefully and am just in a hurry to start treatment to get rid of it.