A friend's daughter has late stage cancer and she made a comment that I thought was worth sharing with all of you. She said: "What if I get better, but then get worse again?"
I want to share that because it's really a classic illustration of the senseless kind of thinking that we sometimes find ourselves in the middle of. Worrying about getting better because it might then get worse is about as senseless as it can get. I completely understand how she got to that point and have had similar thoughts myself. But this comment is a perfect one to use as a reminder to myself. That kind of thinking robs us of the most precious thing we have, peace of mind that comes from living in the present moment of time. It reminds me of the need to focus on the present tense and just deal with the what is happening now, rather than getting all tied up with imagining every possible future scenario. What's the point of "getting better" if you then ruin the joy you have with needless thoughts of future suffering? I have been guilty of this myself, but I am learning to really appreciate every moment of time that I am given. Every moment of time is a gift to be cherished and enjoyed to highest possible degree.
I would wonder if her late stage cancer is even remotely curable, taking into account existing treatments and the probability for new treatments within her prognostic lifetime. Her feelings of Fear or Dread are certainly real to her now, and should not be discounted or ridiculed. The question is how to help her experience and reflect upon them in the here and now, in more positive ways, rather than suffering unnecessary anxiety about future details that may or may not happen in a particular way.
I remember when I was diagnosed with a sky high PSA in the thousands and a NM Bone Scan that lighted up like a Christmas Tree. Intellectually, I was hopeful that initial ADT would "buy me some time" and "quality of life", but, emotionally, I still worried about how well my individual disease would respond, and how long initial ADT would work, before heading back up on the PSA roller coaster with resistant metastatic disease. I was particularly worried about bones breaking.
I got some respite from my own initial fear and anxiety about the future when my disease was very, very responsive to initial ADT. Some of that returned when my disease became resistant to initial ADT. But, in the meantime, I'd had a couple of years to process many of those emotions and to cope with them in better ways than before. I've recently come down off another (much lower) roller coaster peak after starting Xtandi, and I am grateful for another good response. And so it will go.
Those emotions can go up and down. That's one of the reasons I have personally found Support Groups and on-line Support Groups helpful. Talking about it with other people who "get it" really helps me. While I am not Cured, I can be Healed in many ways, in the present moment. I agree with Gregg. Life is here in the Present Moment. Enjoy and Live It as best you can, with your best qualities of balance, empathy, compassion, courage, acceptance, and mindfulness.
It's interesting because I ran into this woman, the mother of the cancer patient, while on a walk through town. I knew about her daughter, but she didn't know about my diagnosis so I told her. I also told her how I was really learning to appreciate life in a new way and learning to fully live in each moment. Then she told me about her daughter's comment. While we were talking, her daughter called and they talked for a while. Then she hands me the cell phone and asks me to share what I had told her with her daughter. I could tell it helped her a lot so that made me feel really good.
The woman with cancer is actually doing a lot better than she was although like many of us here, she is not curable. I hope I was not coming off as ridiculing her, that was not my intention. Her comment was completely valid along with all the emotions, fears, etc. that go with having such a devastating diagnosis of stage 4 cancer. Most of us have had similar thoughts. I was so overwhelmed that I cried in the doctor's office, although that didn't happen while we were discussing how well I was responding to treatments and how much better I could walk and how much less pain I was in. It happened when I started talking about what I thought was going to happen later, what it was going to be like when each stage of my disease progression occurred. What we would do when my cancer became resistant to ADT, then to the second line, then what would happen after that? How would I deal with my bones fracturing and breaking? Yes, it was all coming. One thing would be followed by the next and so on. I knew all of it. What kind of hell was my life going to become then? I didn't need to wait for hell to happen, I put myself in it right then. As soon as I stepped out of the moment of time I was in, and started imagining a future filled with scary and awful things, I destroyed the level of happiness I had. My doctor helped me climb back out of my despair by telling me essentially the same thing I tell myself and others: We'll deal wth things as they come and as we need to, but not until then.
We all live with the fear and uncertainty that comes with our diagnosis, but we really have to make every effort to move beyond that as we are able to. Life is already short enough, let's all the make the very best of whatever gift of life we are given.
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Amen brother! Your thoughts are compassionate for her..A good ting to come out of this for me is that I have incredible compassion for others who are suffering.......
This is quite a meaningful message, gregg57. My PCa journey so far is much more fortunate than that of probably most everyone else in this community. And yet since long before PCa, I have lived with non-intellectual mental health disorders that have severely limited my capacity for what is generally considered a normal life. The impacts have included the end of my career and total vocational disability at the age of 55. My preexisting conditions were rather gravely prognostic of a high risk of succumbing to the stressors of cancer diagnosis and treatment rather than rising above them, as I have thankfully been relatively successful at doing. Despite being persistently emotionally challenged and living in near poverty and almost total familial/social isolation, I have learned how to use mindfulness to my advantage. I believe this concept is important for everyone, but none more so than those of us who live with the uncertainties of cancer. I'll certainly never think of cancer as a gift, but it is fairly clear that it was instrumental in changing me in some powerfully positive ways. I can't say beyond doubt whether mindfulness will continue to work if and when my disease progresses, but you have published a beautifully crafted testimony that demonstrates how critically important it is that we forever keep it an ongoing practice. The dreaded "what ifs" will of course cross all of our minds, but as you suggest, let's support one another in our noble efforts to prevent them from taking our minds over. Where possible, let's also be shining examples for those like your friend's daughter. There will always be many who through no discernible fault of their own have yet to tap into the virtues of being fully present and engaged in the here and now. Thank you for your soothing beacon of hope this beautiful, rainy Saturday morning.
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I also wonder whether mindfulness will work when my disease progresses. But that time doesn't exist, only now. In that sense we are really the same as everyone else. We all are on the same road and it ends the same way for everyone.
I may not be able capable of very much happiness when my disease progresses, but I'm committed to making the best I can of whatever situation I'm in. That may be less someday, but I'll still make the best out of it I can. Only to make the most of it we can, that's our job right now, and for the rest of the precious time we have here.
Thank you for the thoughts. What we focus on can really effect us. It is so easy to fall into that rabbit hole. It has been about a year and a half since I found out I had advanced cancer that is very rare. I was seriously stressed out because there is very little research on how to treat it. Some months ago I finally came to grips with my cancer. I read a blog from a 14 year old that has terminal cancer. She decided to spend what time she has left enjoying life. As she stated, in a hundred years we all will be dead. She will not waist a minute of that time on negative thoughts.
I no longer focus on what the future may hold, or dwelling on what I can no longer do. Instead, I focus and take great joy in the simple things I can still do and experience.
Thinking about the future has always been the main source of worry for me. Now that I've pretty much abandoned thinking about it, I feel a new freedom. That is a big contributing factor in my happiness right now. The more baggage we can unload on this journey, the better off we are mentally. That includes the past and future. I'm really enjoying "traveling light" these days.
When we spoke on the telephone a while back, I knew you had a positive attitude. I shared your comment with my wife regarding the harp. We both got a laugh. Keep them coming, you lighten the load we are all all carrying.
This is a wonderfully wise set of replies. I've had similar worries to the rest of you, but I've never worried about getting better just because I'd then get worse. The possibility of having my condition improve for a while would mean more moments to enjoy, live in, & even treasure.
When I learned after my RP that I had micrometastases to pelvic lymph nodes, I began to need a sleeping pill every night. Trazodone at bedtime was prescribed, since it's not a drug you're only supposed to use for a short period of time. A year later, I decided it was time to wean myself off. I discussed it with a behavior medicine counselor at my Kaiser (HMO) hospital. I told her I had racing, but generally positive, thoughts when I tried to go to sleep. She said there was no problem longterm with a nightly Trazodone, & I needed it because my subconscious knew I had a terminal illness.
She kept me engaged to get at "the real issues." I said although I wasn't depressed (she said I can see that, & I said you would, wouldn't you), I WAS very sad about all the many years I was going to lose with my wife, adult kids, grandkids, friends, & myself. After she concluded that I know how to have fun, she said what you need to do is decrease your stress hormones & increase your pleasure hormones (which even Western medicine M.D.s believe can extend your life with terminal cancer). She wanted me to retire, & said "You want to have some healthy retirement time, don't you?" I retired after several months of completing projects at work that were meaningful to me. I went to see live jazz & other music more often, & even developed friendships with musicians I admired. My wife & I began to travel more extensively, thanks to downsizing & a retirement savings account. I had more time for family. I gave up the stresses of my job. It's quite clear to me that less stress & more fun is extending MY life, while also making the many moments I'm living in, um, MORE FUN! I've had 11 years of fairly healthy retirement so far.
In Sep. 2011, I had a sudden loss of mobility. A PCa tumor had caused a spinal cord compression, & I needed emergency surgery, followed by inpatient rehab to learn how to walk again, etc. I was disappointed because I'd had plans to do things I was looking forward to, but I immediately decided that since this was what I WAS going to be doing, I wanted to make it as much fun as possible. I was delighted to find that my wife had made the same decision!
I thought I'd be reclusive during rehab, & so I could read during lunch & dinner. In my first spinal cord injury workshop, the woman in the wheelchair next to me engaged me & I liked her. At the next meal, I saw her sitting with another woman & a man. She waved me over. We were a diverse group in many ways, but we each had the ability to make each other laugh, a lot. My wife & other visitors of mine & the others at the laughter table joined in the fun in the evening. As much as I enjoy reading, I know I got more endorphins out of the socializing with others who were working their way back from spinal cord injuries, & our family members, because we were all in positive, humor-filled moods.
My wife & I pulled off the winter Southeast Asia trip we had already planned & made reservations for, although I was using a large walker, & even though we had trip insurance. By June, I was walking without any assistive device, & then I earned my drivers license back (the doctors were required to report my disabling injury).
Manatee, if you're still with me here, I really admire how well you're handling your situation, & I'm glad to see you involved in our group. But I hope you'll make the effort to get more involved with other people. This could be an in-person advanced PCa forum, people who share an interest or political perspective with you, a volunteer opportunity, an interesting class, etc. As well as you're succeeding in doing in isolation, I'll bet you already knew, or are recognizing as you read this, how valuable other people can be to making your life just as enjoyable & satisfying as it can be. What do you think?
Neal
I'm guilty of those thoughts also. I'm kinda in that position right now. For over a yr. no -visable signs..My Onco told me this type can typically last my 4 yrs.I belive in your philosophy of living in the present.There ain't no guaaarenteeess for none of us ...Like the line in Shawshank redemption by Morgan Freeman "Either get busy livin, or get busy dying."Thanks for your inspiration.My prayers go out to your friends daughter and family. My heart breaks for any women and children that are suffering .Not to be macho, but we are men with APC . We are all going to die of something. But the children are innocent ,When I was first diagnosed I felt like. OK , I deserve it.... Ive been no angel in life. I almost died of kidney failure .If God wants me gone? Then who am I to argue.Take me! If you want God. 50yrs ago they didn't do the bilateral neauphostmy surgery that gave us the time to shrink the tumors that blocked the urethra. I was saved for now ..
So yes I'm happy to be here..Music friends laughter and song, nature and loved ones.This world has much beauty .For me the most beautiful thing is sitting right here next to me on the couch.My angel that gives me unconditional love..I couldn't have made it without her..I am fortunate..
Love that line! My future planning time line is getting shorter--I no longer save for vacations two years away. But I get a lot of joy out of doing stuff in the moment. I'm a retired preacher who always preached about living in the moment. After about 6 month of grieving my diagnosis three years ago, I realized I pretty much have to do exactly that or give up. I've had some of the greatest moments of my life in the last 2 1/2 years. My ESP is still AWOL, but worrying about what might be coming down the line is not productive.
I agree, worrying about what IS coming down the line is not productive. What is coming down the line is really the same for everyone who is alive. We could all start worrying about this the day we are born into this short life. But then what's the propose of being alive in the first place?
I just think about how different I felt 6 months ago. The same cancer I have now was growing rapidly in my body with little to stop it. At the time, I felt great and had absolutely no thoughts about what would eventually happen to me someday, as if that someday was so far away that it didn't matter. So why is everything so different now that I "know"? I'm learning It really doesn't have to be different. I am learning to deal this cancer, take it seriously and treat it, without thinking about things that do not exist. Only now exists.
Worry & fear of our future possible complications can be detrimental..These are human conditions...As a preacher you know that "Love " is the most beneficial emotion.It can heal our souls.
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We all need to live in the moment.You speak the truth..Faith is paramount. sounds like you have it. ..Its a chemical battle within.
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Thanks. Yes, life has new problems now. But our mortality has not changed from what it was. We are much more than our diseased and decaying bodies. I'm experiencing this even more now.
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This is our only life on earth..Even the pope ducted when they shot at him. No one is in a hurry to jump to the other side ..We're just hanging in there , doing our best hopefully ..Any of the "good feeling" moments that I experience now are appreciated by me ten fold.. peace brother , hope you enjoy the 4th.we'll be riding in the 4th parade Cody Wy in 1920 model T . That's something new ..enjoy!!!
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