Hi, Leah, it’s great hearing from you and knowing that your months “on-the-mend” have now resulted in “mended.” You were missed!

“How do we live, knowing that we are all dying?” is a good way to state the issue, probably better than “life is inherently fatal” or similar comments which are often made in a half-joking manner because it’s so difficult to start a serious discussion. But in your absence we did manage to probe the subject to a degree, and one of the discussions you alluded to was probably the forum thread begun by Terryl here:

http://cancergrace.org/forums/index.php?topic=780.msg4036#msg4036

It would have been interesting to have had your comments at the time, and maybe you’d care to offer some now. As you can imagine, part of the discussion was conducted between individuals via personal message, but I’m sure there’s plenty more that can be discussed openly in spite of the wide range of concepts regarding what happens after so-called death.

Aloha,

Ned

Glad to have you back Leah!
As Neil mentioned, we did our best to probe into this subject while you were gone. I still have a lot of questions to which answers will, I believe, only come with time. I would like to ask, in your experience with terminally ill patients and support groups, do you find that most people, in general, do come to terms with their imminent death? Do they ultimately find peace, even if it is literally on their death bed, or is it just beyond human nature to accept the inevitable? I was quite anxious for a couple of weeks worrying about the future. I am better these days, but I know me, I am not worried about my mortality this week, but who knows what tomorrow will bring. I expect that is ” normal” too…

Welcome back, Leah.
I had never felt healthier in my life when my lung cancer was diagnosed. I guess that’s what makes me so aware of the unpredictability of life.

Recently I find that I have focused my worries about dying on everyone about me.
If my husband is a half hour late, I’m sure he’s had an accident. If I don’t hear from my daughter in a couple of days, I imagine all sorts of tragedies. If my sister calls at night, I’m sure it’s to tell me our mother died. If the cat is late for breakfast, I’m sure he’s been hit by a car. Etc., etc., etc.

I seem to have focused my morbid thoughts on everyone else rather than look at my own looming mortality. I have never been a worrier and this is all rather new to me.

Linda

Hello Leah:
Welcome back! How wonderful that you have recuperated and now you can be Back with us. As already stated by the others, we missed you!
In the past 2 months I have given myself a beautiful gift. I found a counsellor who has life/death views comparable to my own, i.e. Christian and signed up. Oh how liberating our talks have been. A totally safe place to cry, someone who truly listens and keeps confidence and has the education and skills to “deal” with me, validate me, help me work my way through.
I already was accepting of my situation, but this is just such an added bonus. I highly reccommend the addition of a counsellor/therapist to a patient’s care team. It’s like getting “emotional massage”!
Foxy

Leah, it is good to see you back and on the mend. As Ned pointed out via a link in his post, we touched on this subject previously and I think it helped me somewhat as it was very shortly after my mom passed.

I think my views on the subject of death and what it entails changed over the course of living life. As a young child I was afraid of it; I guess that is normal. As a teenager, I think my attitude towards it was of “disinterest”. When I was a teenager, an older person said it best, “Teens think they are immortal because of their youth as if youth makes you immune to death.” Now as an ‘older’ person, I can appreciate that comment: I think his observation was on point.

Leaving the teen years and progressing into each decade of adulthood my attitudes have changed, on the subject of death, but it has also changed towards living. Eg, “Tomorrow is promised to no one.” “Live by the golden rule.” “Live, love, laugh.” Live your dream.” Etc. Clichés maybe, but there are truths in them. Prior to my mom’s illness, I think I settled on “Between the dashes”- it is what we do with the time we have between the dashes that matter, not how much time is between them.

What I suppose is ‘frightening’ is not death itself, but what happens after. I suppose this is colored by one’s spirituality, philosophy, etc. There are some that believe there is an after-life, others believe this earthly-realm is it; there is nothing after. I respect whatever a person holds as their belief system but I think beliefs can help one cope with the finality of physical life.

One day, while my mom was still battling this disease, my brother and I were talking and he said to me, “You know, we aren’t the first to go through this and you know what, unfortunately, we won’t be the last.” My brother meant it in a two fold way: that our mom has this disease and is fighting and the idea and reality of losing our mom. Having that conversation helped me to put things in perspective again: No one is immune to the down side of life, whatever that downside is at a given point in time.

I think the subject of death puts a person in the place of introspection. And this place can bring up unresolved memories, issues, etc or it can be a place of peace or a place of action. For instance, my grandmother is “ready to go.” She already told us so, she says she has lived her life, raised her children and grandchildren, had a wonderful career, her church, friends, family, etc.
She has no regrets and did all she wanted to do. So she doesn’t want heroic measures to keep her around if it comes to that. Her spirituality and faith are a big part of her outlook on this as well.

As far as we know our grandmother does not have any major illness, just the usual things that happen to a physical body after eight, almost nine decades of living. But considering what we just went through with my mom this year, my brother and I aren’t ready to say another goodbye. But we can talk about it because we know our grandmother has no qualms about it but my brother and I still like our grandma to stick around a little bit longer- God’s will, she will.

My mom did not fear the inevitable in her situation when it came to that point, but I think she thought she had more time and quite possibly, that may be part of the fear that most people have. When it is your time, will you feel that you had enough time in the physical body to let go?

My brother and I discussed this too in reference to my mom, and of course we felt we would have had our mom a bit longer than we did. But while we had her, we appreciated her and loved her and she knew it. So we have no regrets or guilt, but I think we may feel cheated.

But then my brother and I remind ourselves that there are some people who did not know their mothers (or fathers) for whatever reasons or quite possibly had a “bad” relationship with their parent(s) and now there is no chance to rectify it, if there ever a way to do that.
How blessed we were and still are. Are we trying to rationalize our mom’s passing or find our place of comfort at this time? Maybe or maybe it is part of
our belief system? All of the above?- probably all of the above

Sometimes I think it is the process of dying, especially in a case of this disease or one similar, where there are debilitating effects causes the most grief than the actual passing. I think that was the case for me in relation to my mom’s illness and passing. Watching her suffer was awful. I grieved heavy while she was battling; it is only after she passed I realized although I was in the battle with her, I had grieved hard during that time as well.

I think sometimes you have to touch on this subject of dying, to really appreciate living.
No one really knows what one will do or feel when truly faced with their own mortality, but I think once one accepts that in the end, there is no way around it, living becomes a sweeter experience than it already is.

Or as was said in the movie The Shawshank Redemption”…It comes down to a choice, get busy living or get busy dying.”

Thanks for allow us to discuss this topic, it does help.

Namaste

Ree

Dear All,

Thank you all for writing here, and I’ve really gained a lot from your thoughts here. I don’t know if it’s a rationalization, but I see enough families and friends come out to be with many of my patients with terminal illness that it leads to opportunities to move beyond the petty stuff and really express themselves to each otehr. I’ve seen some of the most encouraging love, support, and humanity in the devotion and care for a loved one with cancer that it reminds me why it’s worth pushing on through the hard stuff.

Leah’s still adjusting to a new schedule and, like so many of us, is trying to juggle a lot of demands on her time, but I know she’ll be coming back to add her thoughts. Incidentally, one of the things she’s been part of is a new support group for lung cancer that is starting up at our institution — a very welcome addition.

-Dr. West

Hi Leah,

Thank you for such an enlightening post.

Although I am not the cancer patient, but rather the wife of one, death is a very scary topic but one we must deal with every day.

My husband was diagnosed in June of this year with Stage IIIA Lung Cancer. He went through radiation/chemo. The results after treatment was about a 30 percent reduction of the tumor. He will be having a CT scan on 12-15 to check for progression. Needless to say we live each day with fear of what this scan will show.

In July my husband wanted to put our “Affairs in Order.” We took care of both of our cremations, updated out trust and made any changes to our finaicial affairs needed.

We now sit and have many long conversations. My husband doesn’t talk much about his actual dying but more of what his concerns are for me after he has passed away. I have always known what a special man he is, but this has brought on a whole new mean of “Until Death, Do Us Part.”

I have PTSD and my Dr is very concerned about just how my husbands dying will effect me. She has told me that I need to accept the fact that my husband will die from cancer. I do accept that fact, but how can I know how it will effect me until it actually happens?

God Bless You Leah you are indeed one amazing woman.

Bernice

I spoke with Leah, who wants to deal with everyone’s comments properly, so she’s going to follow up with another post to address these points.

She has also been delayed she’s working half-time now, semi-retired (kind of like a glass half empty vs. half full, I guess), and her internet connectivity at home was disrupted (by a mouse in the basement chewing through a wire, I understand). Expect to hear from her soon.

-Dr. West

I am new to this forum and have really learned a great deal and really appreciate what all of you are doing for the rest of us dealing with Cancer.
My dad was diagnosed with extensive Small Cell Lung Cancer and having a scientific background, I was compelled to learn everything about it in the last month. Unfortunately what I have learned is that this cancer is uncurable and although it responds to Chemo well it “always’ returns as I have been told and becomes resistant to further treatment. As you can imagine this is horrifying to me to learn that the probability is that my Father will die in less than a year from this disease. The more I read, the more I have come to accept that he most likely will not be a “rare” case and yet I feel guilty for feeling this way. Mainly because I feel like I am giving up hope when this is what my Father needs more than anything right now.
It is especially hard since the physician has not talked to my father about these stats and has only told him that his cancer is incurable and that he will try his best to control the disease. My father has not asked, nor my Mom, what this really means as far as the big picture. I had a very hard time holding back the tears when my Mom told me that she had great hope for my Dad after the first treatment that things would get better and that “he could fight this disease”. I was torn, I wanted to believe this would be the case, and the knowledge that I knew about the disease prevented me from feeling this way. She told me not to be so grim, that I needed to be hopeful and then she asked “do you know something that I don’t”. Of course, I said “no, I am just scared” and I cried inside. I can not tell her what I know- I don’t want to take her hope away from her and yetr I feel decietful for trying to protect her.
I am at a loss in how to deal with this. For a month I have been absent in spirit and have tried to sheild my children from my depression (who love their grandpa so much- they grew up with him there everyday) and although my husband has tried to be supportive by listening and loving me, I feel that I am cheating him as well from being a ‘black cloud’.
I do not know how to talk with my Dad about it, he is a realist like me. He tells me that he feels like we caught this too late and yet he still is trying to fight it with Chemo although I think that he doesn’t believe it will work but still has hope. I think he shows a different side to my Mom. When I am around him, just as you said Leah, it is hard to even imagine that he is not going to be there a year from now , it is inconcievable since he is talking and walking, and although he seems frail, he is still my dad. So when I am with him, I don’t ’show’ sadness because he is there in the present and when I leave him I am an absolute basket case, holding back the tears everywhere I go ( like when I am standing in line at a store and start to cry because something on the shelf reminds me of him). I do not have any fears of him dying per se, I am just so sad for him and what he will miss out on, and the time that I will have lost with him and all the things that i will not be able to share with him. And yet, I have not even told him this, and wonder whether he even knows the pain that I am in dealing with his disease. Sometimes I think he must think I do not even care, since I am so emotionally “strong” when I am with him- I can”t help it, I do not feel weak when I am with him (as I described above) but yet I think this persona comes off as not caring.
For the last 8 years I have been taking care of my parents financial and health affairs and there is so much more to be done now with the idea that he may not be around in the next year. Trying to take care of all these loose ends quickly is emotionally draining too. Since some of these duties requires his input it creates the “illusion” to him that I have already given up on hope that he can survive and am doing things that are required because I am anticipating his death. It makes me feel terrible but I fear for my Mother that these financial matters will not be handled in time. There is probably nothing more sobering to a patient that is just starting Chemo than his daughter trying to square away wills and mortgages- I almost feel ashamed. I know if it were me that I would want all my ducks in a row and I know my dad would feel better if, in the end, he knew these things were taken care of but this reality can not be good for “keeping hope alive” if everyone around you is running around planning your death.
If it were me…. I almost think that I could handle dealing with the news better if it were me with this illness than dealing with helping someone else deal with it. That is the hardest part. I want to take his pain away but I can not control that, I want to help him with his sadness but i don’t even know how to help myself with my sadness. I want be happy while I am with him but I guess until he learns to deal with his situation and lets me in on it, I can’t make the “best’ of it and in fact even if I wanted to feel happy, I somehow feel guilty about being happy - is all this normal???
In the end Cancer is better than dying of something that takes you quickly where you can’t even enjoy each day that you have left- but in some ways it is more painful since you have to face your death head on. It all seems like a bad dream- I just was not ready for this- he is only 67.

Rachel,

Thank you for your thoughts and some pretty big questions. I’m going to try to reach out to Leah, who retired a few months ago, so I don’t know how reachable she is, but I’ll try. Dr. Harman, a specialist in palliative care who works with patients and families facing a terminal diagnosis, may be able to offer a valuable perspective.

Rachel,

I am not a medical professional but a daughter who has been struggling with many of the issues you are facing since my mom’s dx three years ago.

In the beginning I too did the research and came to the realization that my mom would likely be gone within the year. As soon as I heard the news I began grieving her passing. It was almost like she was already dead. I was also afraid of all the “business” that had to be taken care of and whether we would be able to do it all. I hit a real tunring point one day when I realized that she was still with us and instead of mourning I should be grateful for every day we got with her. That change in thinking made all the difference in the world. Interestingly, it also made it easier to talk to her about some things she needed to deal with but had put off. Conversations began “There are some things we need to talk about and now seems like as good a time as any. I know you are going to fight this disease and I am behind you, but this is a reminder that there are some decisions we need to make that we’ve put off too long. Even if you recover 100% from this, we will need this someday and maybe it is a blessing that we get to make some plans while we can.”

I have to admit I had to start the conversation a few times before my mom and dad were ready to talk, but they were ultimatley relieved because they had been worrying about these things too. Making these decisions has allowed us all to relax now and REALLY concentrate on helping my mom fight her disease without all the other worry. Your mom and dad may be relieved if you gently start working with them on these issues, like you they may be afraid to bring it up. It does not mean you are giving up to deal with the business of life (a part of which is preparing for death).

We were told by my mother’s oncologist that she was also incurable, but that her oncologist thought he could control her disease. So far her has controlled her stage IV NSCLC for a little over three years. She has responded well to most of her treatments although eventually the disease begins progessing again and she moves to the next treatment. She wouldn’t trade the three years she has gotten for anything and we have been grateful for every single day we’ve had with her. A week ago we celebrated her 80th birthday. Your father may respond well to his treatment and have more time than you think. The statistics are notoriously bad for predicting how any given individual will respond to treatment.

Whether he has a lot of time or a little, I think you might find that the quality of time will be better if you can help them deal with the issues that need to be addressed. Once you no longer have to worry about that then it becomes easier to focus on the quality of your time together.

Susan

Dear Rachel,

I’m so sorry for what you and your family are going through with your father’s diagnosis of cancer. Just in reading your post, it seems that you love your father deeply and are bearing a tremendous amount of suffering. I know you are new to this forum, so welcome—while I can give my comments as a palliative care physician here, I think the experiences of the other GRACE members, like Susan, will be invaluable. Susan—thank you for sharing your experiences and your wisdom.

You ask several times about your feelings being “normal”—yes, what you describe is normal. It sounds like you are experiencing a type of grief, an anticipatory grief—grief due to the loss of what you anticipated would be your father’s health and the life and times he should be having without this horrible disease. And many family members speak of how they wish it were them and not their loved one going through this, as it is one of the most difficult things in life to witness a loved one suffer.

I would echo Susan in approaching advance care planning, which I would say includes all of the ways you are helping your parents with financial/health affairs. What you are doing is very good planning, not taking away hope. Another way to view advance care planning is that it relieves the burden of “nitty gritty” issues for your parents–it can help them focus their energies on his treatment and for him feeling as well as possible. In speaking with multiple families who have gone through this, advance care planning is a very tangible way to help. It is the opportunity now to do what may have been overdue, as Susan suggested—the time to do advance care planning is indeed when one is feeling relatively well and can communicate their wishes so that if a patient becomes very ill, they aren’t shouldering the burden of sorting out finances and arrangements while also sorting out their treatments and medications and procedures.

For patients going through cancer, oftentimes I hear from both the patient and the family member that they deliberately are not speaking about these important issues in order to protect each other, even while each of them are struggling with the same questions. My concern in witnessing this is how isolating and distressing that this can be. I have the same concern for you in your situation. The stress of this “protection” can be helped when you and your father can talk about how you are both doing and how you want to help—the fact that your father has already spoken to you some about how he is feeling about the cancer is a good start. All of this communication about difficult topics is really a process, not a single event/conversation, so expect that it will take time—that is OK.

For yourself, another resource can be the social worker in your father’s oncology clinic—oncology social workers are there for patients and their families.

Take care,
Dr. Harman

Rachel,

I read your post with great empathy. I’m going through similar feelings with my husband, who was diagnosed with Stage IV NSCLC almost a year ago. After the initial crisis of his spine surgery passed (the cancer had spread to his spine and brain by the time he was diagnosed), I began to speak with my husband about the advance planning (change of our will, changes in our living trust, unwinding of our finances with his brother, with whom we own real estate, selling our huge home with multiple levels and stairs to downsize into a much smaller single-story house so I can more easily take care of him etc., etc., etc.) At first, it was awful because he wasn’t happy about having to think about these things and I felt so horrible and guilty for even bringing them up. But amid all my turmoil, I did realize that the sooner we got these things taken care of, the sooner I’d be able to focus SOLELY on taking care of him and on enjoying whatever time we may have together. (And, like you, I was distraught all the time and continue to be, though I’m starting to feel better since his treatment seems to be working, at least for the time being.)

We are now about one third of the way through all the things we have to do. (I’m doing most of this single-handedly, since he’s pretty frail.) With each passing day, as I accomplish something, I feel closer to my goal of having only one thing to focus on — his care. As I get closer to my goals, I feel better.

He is now very committed to the actions I first suggested. In fact, they have become our mutual goals now. It is still very, very difficult at times. I feel terrible talking to him about some of these things, but since we’ve been into the process for a few months now, decisions have been made and we have to talk less and less about details.

It hasn’t been easy. And yet, every day, I increasingly feel taking these actions have made our lives better. All the struggle with the practicalities has been worth it.

I think the biggest thing with us was just mustering the courage to start talking.

Take heart, Rachel. I share your pain because I’m going through something similar myself. You can do it!

God bless you and keep you and your father and mother. I wish you all the very best as you go through your own process.

Rita

Too all the silent heroes that are fighting this disease, all the loving families who are dealing with it, and all the doctors,nurses, social workers, and scientists that are contributing timeless hours trying to understand, help people with, and cure cancer, I wish you all the strength and love that one human person is capable of giving. People like me have the utmost gratitude to all of you.

When I read the comments from some of you below, I cried because it was exactly what I am feeling:

“It sounds like you are experiencing a type of grief, an anticipatory grief—grief due to the loss of what you anticipated would be your father’s health and the life and times he should be having without this horrible disease. And many family members speak of how they wish it were them and not their loved one going through this, as it is one of the most difficult things in life to witness a loved one suffer.”

“In the beginning I too did the research and came to the realization that my mom would likely be gone within the year. As soon as I heard the news I began grieving her passing. It was almost like she was already dead.”

“But amid all my turmoil, I did realize that the sooner we got these things (practical loose ends) taken care of, the sooner I’d be able to focus SOLELY on taking care of him and on enjoying whatever time we may have together.”

It always amazes me when human emotions are so universal and that is why forums like this are so important in healing. At this point, I find it very hard to deal with these emotions and trying to find out everything that I know about this disease and how/ and what can be done is somehow allowing me to cope with it better. But on the other hand, the more I find out, the less hope that I unfortunately have for things to get better. The only positive from knowing the literature is that I don’t waste any time, and instead I have been trying to spend as much time as I can with my Father as possible. When I am in his presence he is alive and the same person that I have always known him to be. And then it hits me silently, usually in the middle of a conversation, that I will lose him soon, and it becomes so unbearable. I trick myself in not dealing with these thoughts by just trying to be grateful for the time I have with him. The hardest part is not coming out and screaming at times, “but these treatments are only prolonging the inevitable- what are we going to do”. I know that down deep he already knows this but he hasn’t given up hope yet so why should I concentrate on probability when he is focusing on possibilities.
Cancer affords us time, but is a very painful process dealing with the time you do have. It is hard for anyone to imagine that their existence will be gone unless you are the person it is happening to. It is terrifying, and as Leah said ” families lose one person, the patient loses all of their love ones”. I keep trying to figure out how to make my Father feel better about his- but some things you can never feel good about. And breaching the subject is even more painful. I am hoping that if he wants to talk about it he will. But like him, I am helpless and realize that there really isn’t anything that I can do, that life must go on, and that I have to face the fears of losing him and I must do all of this at the same time as trying to celebrate his life everyday while he is still here. Not easy to do as all of you know.
Thank you again to all of you who took the time to write and send me your kindness. This is such a wonderful forum.

Rachel,

I can feel what you’re going through so acutely. Because, in my way, too, I’m going through it too.

A friend of mine sent me a passage written by a woman named Joan Borysenko. (I don’t know who Joan Borysenko is, but I wanted at least to attribute the quote.)

My friend and her husband were going through cancer AT THE SAME TIME a few years ago (she, breast, he prostate. I know very well that those cancers aren’t lung cancer, however, they were having a terrible time.) When I first read the quote my friend sent me, what stuck in my mind most was that by the light of a single candle in the dark, one can only see the next step. That image has helped me as I go through this journey with my dear husband who has Stage IV lung cancer. I keep taking the next step with him, even though we can’t see beyond that step.

After a while, the rest of the quotation has become meaningful, too. And if you’re not particularly a believer in a deity, I think you might substitute another word for “God.” (Your own higher power, love, the benign universe, the community of friends–whatever is meaningful.)

Anyway, here is the passage:

“You are at my side, dear friends, and God is everywhere. Yet ultimately we are alone, making our way home by the candle of the heart. The light is steady and sure but extends only far enough to see the next step. That there are steps beyond is a matter of faith. That we have the faith to endure and walk our own journey-even when we think that we are lost- is a gift of grace, and of friendship. Many times our light seems to go out. But another light, one held by a stranger or a friend, a book or a song, a blackbird or a wildflower, comes close enough so that we can see our path by its light. And in time we realize that the light we have borrowed was always also our own. ”

I hope this helps you, Rachel, and anyone else who may read these posts. Please know that you and your father are in my thoughts and prayers.

Rita

Rachel and Rita -

Thank you for your thoughtful posts and the quotation from Joan Borysenko. This is a tough topic for all of us.

Just to add some information about Joan Borysenko: She’s a Ph.D. (in medical sciences, I think), with postdoctoral training in cancer cell biology, behavioral medicine, and psychoneuroimmunology. Her father’s death from cancer motivated a strong interest in the area of integrative medicine. She’s widely published and in demand as a speaker in the field of health, healing, and spirituality.

- Catharine