I'm sure we've all heard it before, maybe even said it ourselves: "All we can do is buy time so we die from something else." As if the goal is to die in some other way.
I heard this again at a support group meeting last night. While going around the room so each person could tell their story, one man with a slow growing form of prostate cancer said, "I'm probably going to die from something else."
I started thinking about that as we continued to go around the room. I didn't really know what to say about my own, much worse situation other than the truth. I will probably die from prostate cancer and NOT something else. Then it just popped into my mind all of a sudden and I said: "Does it really matter how you die? What's more important is how you live."
I know we are all fighting this beast to stay around as long as we can, I'm all for that. But in all the fighting, sometimes it's easy for me to lose sight of what I'm fighting for. Its certainly not so I can die from something else. I'm fighting to make these days nothing less than the best days of my life. It's not how much "time you buy" that's important but how you live it.
So let's all be fully alive in whatever time we have here and savor every moment.
I totally agree with you Gregg, making the most of each day and doing all that you can and want to is a very good attitude. When my husband died earlier this year from Advanced PC many people remarked that we had certainly had a couple of very busy years enjoying holidays and the like before our wings got clipped.
This makes many happy memories for me to look back on and take away those last few difficult months.
What can one say but well put. Yesterday I had my monthly full bloods and PSA 0.03 again. Glucose resisting treatment so diabetic problems. Onco asked questions and we finished (with 2 trainee doctors also) debating which I should worry most about. ?reduce diabetic drugs or limit ca. drugs. I said I had already considered options. No PCa drugs and a death more short term than long and, quite frankly, horrible. Or quit diabetic drugs and stay stable PCa & lose my feet, go blind, and have heart & liver/kidney probs. I chose to live as I am, fighting cancer. Diabetes will take linger to bring on the nasties. Looks like we share the same methodologies. Actually my results yesterday fbc too, we danced in the consulting room.
With a .03 you should have many more years left. I was diagnosed at 58 years old and am now 81. My PSA was as high as 3,650 with no treatment until 7 years ago. I have had bone mets for the last 7 years (no pain) and treated with Lupron then Xtandi. No other treatments are available to me now but I had 23 years of life. It was a bumpy road but my point is that you can have a long life ahead. Do take care of that Diabetis and live life to the fullest.
Hi KidKotch, you have certainly travelled a hard and long road. And you have many mile to travel. I was responding to Gregg57 and am in full agreement with his philosophy. Just a coincidence that I was seeing my Onco immediately after reading Gregg's filing and she and I are in full agreement with him, as I imagine are you. We are all in this together and look for advice from our older members. I still feel fit and young at 71.
Since diagnosis, my motto has been "Got to have more fun." Of course, it is up to each individual as to how they have fun, but I aim to finish each day with at least some satisfaction. The challenge, I find, is when other people (typically work related) get in the way. How does one rise about them?
Very true, my future is very uncertain, second string casodex hasn't worked very well if at all and the degarelix has lost most of its effect. I have metases on my rib cage which are causing quite a lot of pain, trying to get my pain management under control , next stage in
consultation with my oncologist looks like being chemotherapy in a few weeks time, the option of struggling to swallow yet another form of hormone treatment doesn't appeal at all,
I have issues with swallowing tablets. So I try to take every day now as a blessing to be savoured and appreciated, difficult sometimes with the pain...Good luck to everyone in the same position..
Don’t know if anyone has suggested to you to try taking pills with a teaspoon of applesauce. My husband had some large pills to take and his sister a retired nurse suggested the applesauce trick. Just one tablet at a time if they are large. Worked like a charm. Another suggestion is to take advantage of the Pallative care staff at any stage. They are the real experts on managing pain, constipation and any other symptoms. I could just call any time with questions on handling new side effects.
Gregg, my sentiments exactly. My experience with PCa really shook loose all of the same kinds of feelings. Nothing like having a near-death experience to help put things in perspective, right?
Well, hopefully not TOO near-Death! I'm actually doing pretty well right now. I was mostly referring to what happened to me when faced with a life-threatening illness- the severity of which was at first unknown. Still- it's something that really makes one re-evaluate one's priorities.
I'm still here, at least until Grimmy drags me out of this world kicking and screaming!
I'm happy to hear that. I'll be 58 on Saturday, I'm making my mother Veal Oscar on Sunday. Also making Brotchen for the bread. First try at it. Thought you'd be interested.
A positive outlook is essential to healing and living. No matter what the health threat or moral challenge. We are created for fellowship and this group helps to fill a gap in my k knowledge and my soul.
Thank you.
PeteG
ps-Did I tell you I painted my house to match the PCa bonny blue ribbon?
Awesome. My new motto- you can be pissed on, pissed off, or just believe it is raining. Make each day a gift. A good friend and very healthy just passed away unexpectedly one minute here the next gone. Me- yes I have stage 4 prostate cancer but today I am here!
Though I love the way you all think I have not been able to wrap my arms around the whole live your life to the fullest every day and travel and whatever. I feel trapped because if I live the 5-7 years my doc said I will fall short of full retirement benefits but would however be more inclined to travel bit and enjoy while I can. But things are changing. Treatments are coming around that prolong life for us unlucky diseased souls and even if it is a minimal 4 months for each one, it brings me closer to the finish line to collect full benefits for retirement so my wife will get the best possible future. I know this sounds a little dismal but it is the way I think. I would not be happy if we started to relax and spend money on vacations and the like and then live another 15 years or so with not much to live on during and after I am gone. I too am obsessed with this disease and am always reading about it. So going forward I know I must carry on as though I will live a long life until something changes in my status. I had RP in May 2015 and after recovering from that I had my first PSA and it was a persistent 9.4. Checked again to be sure and it was 9.61. Started Lupron and have finally reached <0.01 undetectable PSA. It has been 21 months on Lupron and it is miserable due to all the typical side effects. But that being said, it is a good sign that I could go a while on this journey. No one knows, Right? Oh well to all out there I didn't mean to bring rain to the parade.
I'm in a similar solution, at least in terms of still having to continue work. I'd like to retire now, but can't. So in some ways I feel like I may be missing out on whatever time I left by spending any of it working. But on the other hand, I do enjoy what I do for work and find it adds satisfaction to my life. If I was in a job I didn't like and working crazy hours, stress etc., definitely would want to get out of that. But I would anyway, whether I had PCa or not. I always think to myself, what would I be doing if I didn't know I had PCa? What kind of life would I want to have? I try to have basically the same life I had before the diagnosis. This is not to ignore the reality of the situation, but don't let it take you over and rob your quality of life.
I only really get sad when I think about the future and how things are going to end. But, then there are no good endings for anyone in that sense. I could have started doing that from the day I was born. The ending is always the same, why waste time and energy trying to imagine it? Deal with each stage as it comes, when it comes. That's the best approach. Unless there is something you can do now to actually help you with that in the future, don't bother trying to deal with it before it happens.
My suggestion is the same I give to myself, learn to live in this moment of time. Right now, in this moment, you are exactly the same as everyone else here. You are fully alive right now. No one else is better off than you are. I'm not saying we shouldn't prepare for the future, but things that are out of our control are a waste of energy to obsess over.
I have to disagree, because I can. When you all speak about doing the best you can to defeat the beast, there's a limit to what most of us can do. We can find the best doctors, the best facilities, and the best treatments, what we can't find is a cure. I'm seven years with no testosterone, and it sucks. This cancer will kill me, there's no doubt about it. There will be no bus or truck to walk in front of, unless it's my own doing, and that's not the plan. I watched my Dad die in his own bed from brain cancer, he was my hero for undergoing the suffering he went through. I saw my cousin's cancer eat her from the inside out. Literally. No, I will die from this disease, but on my terms, and no one else's.
Peace, Joe
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I think we all agree with you that this and every other cancer is an awful disease to have. Certainly, no one here has chosen prostate cancer. But what we can choose is our attitude about it.
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Absolutely. When I came upon this disease, I was floored. Now, seven years in, I have a very different attitude about it. It won't beat me in any way. I refuse to let that happen. Then again, I may be hit by the bus, who knows.
HI Gregg57,New guy here from Boston, 64 years old.Found out about P/c stage 4 April,2017.Gleason 9/10 have been on Lupron since just started Extendi.I love your attitude got to keep on keeping on for myself,family and friends.The times I get sad is when I think about what I'm going to miss when I die.But if I live to be a 100 years old I will be sad then for the things I will miss.Chin's up boys every day is a gift.
Right on!! I was diagnosed locally advanced PCa in November 2014, Gleason 4+3, started ADT, now off it, PSA 0.08 in Feb. Still struggling with side effects of ADT but hey, what the hell, I'm alive. The news changed my outlook and I decided to live for today and let tomorrow take care of itself so last year had 2 trips to California, aided by a friend who lives there and kindly accommodated me, a family holiday in Italy with leisurely meander there and back through France, Switzerland and Belgium, At the end of this month, I'm heading for NZ to see the B&I Lions take on the ABs. As there next visit will be 2029 by which time I'll be 79 and maybe not fancying long haul flights, I decided to book an RV and have a tootle around the Land of the Long White Cloud. My family are very supportive, partner still works thanks to her pension age being raised in a very underhand manner but has told me to bugger off and see the world (in the nicest possible way). Then in July it's down with family to Antibes so yes, live life to the full.
Best wishes for the future.
Pete in UK
Well I know that prune juice twice a day helps with that one issue. Daily research and participation on sites like this one is the remedy for prostate cancer which requires so many decisions on the part of the patient. Just do what the doctor says? Nope. We need to be our own advocates. Those of us here have a much greater incentive to learn than any urologist or oncologist. I wonder if they understand that.
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I agree. You really do have to be your own advocate. Nobody cares more about your life than you do. The doctor is an advisor, but we have many others. We have to take all of the information we can get and put it all together. In the end, it's the patient that makes the decision, not the doctor. We all know that doctors, like any other human can be wrong. So we have to "do our homework". Fortunately we have a large amount of resources available today to educate ourselves. Educate yourself and advocate for yourself. Our lives can really depend on it.
Yes, we're all trying to live until some company will discover a magic pill for us to take that will keep our cancer in check for our lifetime with no or with liveable side effects. Yes off course we should also enjoy each day like you said
till that magic pill comes. Enjoy life and be happy. It has to be our choice each day we get up.Take care.
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