What is the truth? Having cancer, especially if it's terminal, sucks. But the problem is not so much physical, at least not excessively in most cases, especially at the beginning. It's your mind that suffers.
It seems impossible, but even when we have people around us who normally love us, a wall of misunderstanding is created.
For example, they don't understand that maybe, for once, at Christmas, you can skip all the culinary preparations, knowing that there's someone in the house who can't participate due to dietary reasons. That dishes can be washed at different times than usual if the person washing them is trying to rebuild a life routine so as not to weigh on others but also to try to fight an invisible evil.
They tell you it's ok to be selfish in your condition, but then they underline the fact that you are being selfish.
No, in most cases those around us try to move on "as before". But that before is, precisely, before. Past. It's a way to pretend normality, to not accept the other's illness.
Even cancer patients try to forget about the disease, and over time they partly succeed, they manage to resume almost normal lives, at least as long as their body allows it. But there is always in the background that feeling, that everything can collapse from one moment to the next, that feeling that is halfway between "I take that degree in mathematics that I wanted even if it takes 4 years" and "screw the world, I spend all my money on fun as long as I can".
This thing, those who do not have a similar condition, unfortunately cannot understand.
And they don't realize that, for example, making others do what you can no longer do is a bit like highlighting your decline.
Once I wrote "But the disappointment is so much. I hope apathy prevails. I would like to get the hell out of here in a transparent way, without having to apologize for the disturbance."
I joked about it. But seeing myself like this, sometimes I really wish for it.
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Maxone73
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Exercising is an almost sure way to improve your health, mental outlook, fight sarcopenia, and maybe even osteopenia, treatment/medication side effects, etc. Exercise a lot. I do it daily with my wife. Running is one of the best cardio exercises if you can do it and it will as a bonus get you away from people looking to suck your time. Ditto for going to a gym. PS if dish washing is a big hassle, maybe get paper plates, plastic cutlery, etc.
"Ditto for going to a gym. PS if dish washing is a big hassle, maybe get paper plates, plastic cutlery, etc."...does not depend on me only.
I just wish not to receive complaints because the dishes are not done by 12 but by 4 pm...as if they were hurting someone's feelings more than having me home trying to cope with this damn disease...and I do not do them in the morning mainly because (drum rolls!)...thank to the 6 rounds of chemo (but side effect will be over soon) it takes me longer to workout, and I prefer to workout in the morning, and I do it basically daily...
yes, my wife works part-time, till noon...but I think I have found a simple way to manage the dishes, I will wash (most of them) in the evening before going to bed. Most of them because our son eats his dinner later than we do
Sorry you feel that way. I have been dealing with this for 7+ years. I retired and started traveling as expected. My life is great and support from my friends is incredible! Their biggest compliment is "You don't look or act like a person with cancer" and the fact is I don't. I gravitate around younger people because they are so full of life not like the beat down people that are my age and "no, I dont want to see pics of your grandkids" Went to a rave with "kids" in their 20's and had as blast. I travel with friends in their 20's, 30's and 40's and boy do we have fun. Don't think about being sick as this type of thing is counter productive. Life is here for the taking and I am grabbing handfuls of it. Have a great day, I am
I so agree Mr scruffy"Life is here for the taking and I am grabbing handfuls of it." . Your attitude is so important. I recently went to a Rap concert In LA with my Grandson, Coco and I were by far the oldest kids in the room but we stood in the 4th row and danced ( moved) to the music. My Plan B in action.
Absolutely! I get the same comments about how I look good etc. In '24, we took trips to Europe for a total of 6 weeks. I'm doing my best to grab it all! Getting my knee replaced in a week, final straw on it was while climbing down from the top of the Duomo in Florence.
I hope everything goes well with your surgery and recovery. Did your doctor have you do any rehab before surgery? My husband is having surgery in March.
My Dr did give a pre-hab sheet, you can see a lot of the basics on line. The exercises are pretty basic for anyone who does regular gym workouts. I’ve added some of movements to my routine.
I know this is not fashionable these days, but being a practicing Catholic, I offer up my suffering for others. My wife is a head and neck cancer survivor, going on 20+ years. I wouldn't trade my condition for her condition. Not even in the same ballpark, even though I'll likely succumb to PCA.
I do find it interesting that the two women iny life are the least understanding of my hot flashes, especially since one is going through menopause at the moment. I can't have the fan on because it makes her cold and uncomfortable but on goes the fan when she's experiencing a hot flash. Go figure.
As for your culinary issues, come on Maxone, you can't expect people to stop living over your elective dietary choices. During Holidays, you can stray a bit.
The dishes, I can relate. The wife being 100% Italian, absolutely hates dishes in the sink and a dirty kitchen. So I constantly get the "When will the kitchen be cleaned?
I wish you the best and try to dwell on the positives in your life. It'll ease the obvious negatives.
my dietary choices are just mine and I have said nothing to them of course!! 😀 we went out for dinner on the 24th, I just wish they turned it down a tad (the "enthusiasm" I mean). Especially since we are all adults, we are not in a “ don’t tell the kids that Santa doesn’t exist” situation. About the dishes what makes me mad is not doing them…it’s that I cannot do them during the day when I am done with my things. I am not asking someone else to do them but do not tell me that they must be done before you come home because you don’t like to see them there. But when after 4 months from a diagnosis of this kind you get a “I thought we could go on as before” speech it means that there is some heavy denial involved.
Ah..I would pay to see your face when the "I thought we could go on as before" statement was spoken ... I've been there...and in my house, it's all looks driven. I don't even get upset anymore at this point...I shake my head and keep moving forward. On a positive, I do get out of going places that I have no interest in going to. Before I'd suck it up, now...nah..not going.
You mean he doesn't exist? Ah shit.................................................................................... (but at least I don't have to write those letters anymore).
Do you ski? I'm not very good but I do get out occasionally. Finally getting a bit of sustained cold and snow here in the SE Pennsylvania area.Looking at the local slopes via webcams, the trails are all open so I'm thinking of dusting off the equipment this weekend and going skiing after work on Tuesday.
I play ice hockey too but it's been over a year since I've laced up the skates...I was chatting up with a coworker about playing and I think I'm going to with a group of guys I've played hockey with going on 35 years. I certainly miss the locker room banter.
I think filling the day with activities that distract is very important.
The Lagazoui mountain looked interesting at least it did when I was hiking up the slopes.I got of the trail and just started walking up the slopes to the Refugio.
Nope, not anymore at least. I used to ski when I was like 10-11, I liked cross country more than downhill. Most people think about Italy as a sea land, but most of the inland territory is mountains I have played many sports in my life, soccer, tennis, swimming, volleyball (the only one where I was part of a competitive team, then I have been a coach as well), free diving (I am an ex underwater fisherman). Actually freediving has been my first love, I was 7 when I got my first freediving equipment. And I started weight lifting at 17, that has followed me for 33 years (with some pauses in between). At 5 I started playing drums but it not last for long, even if I still love to play with drumkits when I can. At 9 or 10 I started with classical guitar, it was love. I still have that guitar, together with another 10 or 11, electric, acoustic folk, basses...of course more than one for each kind, because you never know! I got myself a music education in classical but also jazz music. In fact my AI projects and publications were all about AI applied to music creation. I am trying to restart playing "seriously" but I still have to find the routine, I hate practicing for a week then losing all the gains because I then I stop for two weeks! On second thought...I have so much to do!
I could never sit still long enough to learn an instrument. My dad on the other hand is a classical guitarist. He loves the Brazilian stuff. When he comes over I need to get YouTube up so he can play his music.
At 92 he takes his guitar and amp to the local diner, sets up and plays for several hours. It turned into a meeting place for local guitar enthusiast...some bring their guitars but most play my dad's. He loves it.
It’s a weird situation we are in and a situation often hard to cope with.
On good days we can feel… normal… almost like “before”… with the added bonus we know time is limited and we therefore try not to waste time but aim to live, enjoy and be as thankful as possible. On good days we tend to be more positive and feel less fear. On good days we easier handle setbacks and problems. On good days we are simply men who happens to have cancer, living our lives, sometimes even better lives than before.
Bad days can be rough. On bad days it’s very easy to start staring into the abyss and get cought up in all the negatives (and let’s be honest - we have a lot of negatives to manage). On bad days we see all the problems, the hurdles, the pain. On bad days we fear. On bad days we are terminal cancer.
We do all we can in our fight against our diagnosis. Apart from that, we can also do our best to turn as many days as possible into good days, and limit the bad days.
Because the good days is what living is. And in our situation we need to live as much and as bright as possible for ourselves and our loved one’s.
Sending you a big hug Maxone73. Life is still here to be enjoyed even though our reality differs from others.
You want them to forgo the culinary preparations on holidays because your diet prevents you from participating? This type of thinking totally explains the dishes issue . We can’t seek quality empathy from outsiders, especially family. I do trust you know better!
If you did the dishes exactly as expected, would there then soon be some other unreasonable thing asked of you in its place? Of course. It’s not a game you can win.
This disease tends to make us into someone unrecognizable to ourselves, the treatments even more so. To the advice to exercise much more I would add cultivate pleasantly ignoring their attempts to ‘return to normal’.
You might also try doing the dishes exactly when asked for a bit to see if they even notice.
No, that's what I would have done, I would turn down the Christmas enthusiasm a tad given the situation (it's been just 5 months now from diagnosis)...culinary preparation is just an example...we had a huge dinner on the 24th and I participated
If I exercise more than I do now (6 days per week) I could join a team as well. But even working out has its downsides. Using free weights, I bench pressed 1 rep x 180kg (397 lbs for my US friends!) 15 years ago, I bench pressed 3 reps x 130 Kg one month into ADT, now I have problems doing 3 reps with 90 Kg. I know I am stabilizing now, and that I will be able to increase the weight again (I finished chemotherapy one week ago basically)...but I have not yet learned that I must not compare to what I used to be and to do...some days I could not care less, but some days...it's a killer thought. Nevermind the dishes per se, I see it as a symptom of something deeper. Probably if it happened during one of my positive days I would not even be here mentioning it. But I realize it's hard also for people around me seeing me less positive and so on, even if it does not happen all the time luckily!
according to my psychologist, rationally weight lifting is something useful to control the disease (and to have fun if you like lifting), but she thinks I am using it as a way to measure the disease progression, which is not good (and not a reliable measure)
That’s what you would have done? Turn down the Christmas enthusiasm as a show of what, sympathy? So that and dishes are both red herrings it seems.
How much you used to bench is of no value, in fact the bench itself, that odd choice of a metric men tend to use to measure strength, is also not worth much, particularly in ADT.
There is no downside to working out, only to being disappointed at ADT induced strength loss. Forget the bench and concentrate on your legs, posterior chain and VO2 max instead if you don’t now. You’ll have more energy for those dishes and be less hypersensitive too.
Not sympathy, but practical help. If I know a friend of mine is a recovering alcoholic and I invite him for a dinner with other friends (who know his situation as well) I would probably have less alcoholic beverage available than I would normally have. Same thing I would do if I had an obese friend struggling with diet at my place for dinner. And I must say that lately when I have dinner with friends I have noticed that they have more vegetarian/vegan options available even if I never asked for those (I would never do that, I always tell them that eating "normally" once in a while will not kill me anyway). I have noticed also that since I was diagnosed...more people I know started eating better! 😂😂
I see. I think there’s a interesting distinction between helping someone towards a positive goal, which seems admirable, and trying to prevent triggering them, which I’ve never had any investment in on either end.
If someone comes to dinner who is vegan or vegetarian, I’ll make sure to have some choices prepared with them in mind.
On the other hand, an obese friend will need to look out for themselves, other than large portions not being served. If some want 2nds and 3rds they’ll get them.
And the alcoholic? I’ve been in recovery 40 years and if I ever had to depend on dinner hosts to consider that in their planning I would have relapsed long ago. It’s up to me to read the room, leave early if necessary etc.
I do understand though. I wish people were generally more sensitive to others conditions and needs, but I never expect it for myself , for I would be too often disappointed.
All we have are successive moments of now. Tomorrow exists in expectation, only.
The future visits the present on its way to the past.
And as Jim Morrison once said..
"The future's uncertain and the end is always near."
We are all going to die... It's just how and when.
For those of us afflicted there is still a chance we may die from something else.
So... It is not necessarily "the end of our elaborate plans."
I suggest we be here now... the end will take care of itself.
Wall of misunderstanding it must be. Perhaps family members do not want to change festive cooking for fear of making you feel that cancer is changing things. Maybe they treat you the same to let you know that despite the illness, you are the same and are loved as ever. If you need them to change, you should let them know how you feel. Each one of us feels the fear of cancer differently. We all have to support each other's journey and focus on the love and life as much as possible.
Don’t delete this thread. My partner has cancer and actually you’ve given me some good insights. I’m so sorry, I think you are both sad with this new reality, it’s an adjustment. Just let her know how you are feeling. You have cancer and she is terrified, maybe it’s coming out in “the dishes”.
Please do not delete! It turned into a very interesting and helpful thread. The holidays in 2022 were very subdued for us...Eric's advanced PCa dx was only a month or so old, and we were reeling. This year we were more interested in truly enjoying our sons & daughter-in-law, toddler granddaughter, friends. Re mood - normally Eric is a very positive upbeat guy...but like all advanced cancer patients, he occasionally has his bad days emotionally. This then rattles *me* a bit, and I'm not sure how to help. We try to take a day at a time, and enjoy whatever is on tap that day. And we DO enjoy and treasure things more, in general. That's the silver lining.
hi Maxine, I appreciate your candor. That’s what I love about this group. I was diagnosed w stage iv pc at 50 years old. It was bleak for awhile to the point that, even as things improved I was stuck in that in between place of fearing collapse and wanting to plan for the future. I couldn’t plan beyond 6 months since I had a true inability to see farther than that in the future. I’d like to say it just went away one day. It didn’t. But it DID gradually. And when it did, I feel like I got a true gift of being able to plan for the future, make big changes if warranted, and ALSO live in the moment! I already had a ph d and masters at 50 years old. Now, I’m 7.5 years in this journey and I went back to school 3.5 years ago, and got another degree and am pursuing new meaningful career. You can do this and thing will change, day by day! 🤗 peace, DougNOLA
A great dialog here, please keep it alive. It sounds like your carrying a lot of thoughts and frustrations and can identify with this. I find that the periods come and go. Yes, most people don't understand. Yes, life is filled with stuff we don't want to do. Yes, cancer sucks for its effects on our minds as well as our bodies. But, please seek and find joy. Prioritize it (as best you can), and you might need to let loved ones know that you must do so. And they should help you do so! So some days you will need to say f___ the dishes or forget this social or family event. People might not always understand, and that's ok. I really strive to live and do things that bring joy. And hopefully you can share this with others, and they will appreciate it. Life is too short, especially for us. Best to you on this journey
To put things in perspective my mother died at 44 from cancer. My wife died at 50 from cancer. I am now 68 years old and living with not dying of cancer. I have outlived two of the most important women in my life by decades. I have another very important woman in my life my current wife. Yes after 30 years of marriage and losing my wife I found love again. I can truthfully say I’m living the best years of my life now with my second spouse. It’s all in your perspective choose to live your life to the fullest leave anger and bitterness behind it does you no good. In the end we are all gonna die
What I find so incredibly fascinating is all of the perspectives that are offered here. Everything from "do this, it'll make you feel better," or "you really should look on the bright side of life," or "god loves you and eternal life awaits," or "your comments helped me see things differently," and so on. Many of us offering our take on how to "fix" it or change what you're experiencing; and while trying to be positive and with helpful intentions, missing the point of your post. I guess I'd offer, "I hear you, brother." Each of us does this in his own way.
Mazone73 I always enjoy reading the fruits of your research. Just yesterday I was telling a friend with cancer about this guy in Italy that is part of our online support group who must really be a very intelligent guy and a superb researcher. I have also been impressed with you positive futuristic outlook.
We all need to make transitions not just because of this cancer but because we are getting older. Unfortunately I am the caregiver for my wife so when this cancer was diagnosed there was/is no time to stop doing the things I needed to do.
Like you our Italian nuclear family have always gathered at the holidays and through out the year to celebrate for food, fun and activities like skiing, camping, etc.
Food prep and cleanup over the years has made a distinct transition from my wife, to both of us, to me and now to our kids and grandkids. That is how family traditions get passed from one generation to another and how the family stories get retold and new ones develop.
It was fun to watch my wife over the years teach the holiday cookie and baking traditions to our grandkids, etc. As in-laws joined the family we now have incorporated other ethnic traditions into our family. Who would have thought we could have blended wontons with our annual family tradition of foraging for mushrooms into a new traditional Chinese/Italian appetizer.
Likewise some things have remained the same like the honor of opening the first bottle of wine but I kindly noticed without comment this year that my grandson had prepped that for me and all I needed to do was finish it off with a toast. I decided next year that honor needs to move to the next generation. My hands are not as steady as they once were.
Both our grandkids are at the university and they are joining us today for lunch to celebrate my grandsons 21 birthday. The menu will be simple and will celebrate my wife’s Jewish side of the family cuisine. I am honored that the grandkids thought enough to enjoy a few hours with us. I am looking forward to hearing about their new classes, etc.
We must all remember that when we pass all that remains of us is the traditions, legends and the memories that we passed onto our family and friends. We will not have passed as long as the stories and our names are retold as part of these traditions.
So I urge you to continue to make good memories and new friends as we deal with this cancer. It is important to not only us but to others.
very well said…I need to create some tradition using my mother’s recipes (an almost 95 years old woman self sufficient and made of steel apparently!)… maybe the English side of the family will learn something about cooking??😜😜
It is OK to ask for help but recognize everyone at some point needs help.
Our family and friends can also adapt to the Cancer patient based on that person's attitude. Communicate, communicate, communicate. Write down your thoughts and feelings. Read them to yourself and modify them as you think about it. Live your life: it's the only one you have.
Maxine 73 - I liked what you wrote. Until PC, we’re used to “playing nice” with those around us. But, we all know that PC can change everything. I believe that although we should be sensitive to those around us, when fighting this horrible disease we can only do our best. We will be remembered for how we handled our life….not how we handled dealing w PC for the last part of our life. Carry on!!!
Hey there, I'm 13 years into this. I've been all over the map as far as feeling doomed after reading all the stuff online that basically said you got 5 years. Lots here, maybe will not understand that I myself am very susceptible to the ADT , Then the Xtandi. All kinds of issues have come and gone. And I look back at most of them and think , that was stupid. But anyway I'm happy to be here and about 2 years ago I blew the dust off my guitar after 40 or so years of not playing. I never was any good but found a group of people that meet up once a week and play. What a gas. Anyway, it's up and down and all around. I just found out the cancer is back in my prostate. This will be my third go round. And after this long it's the first time I'm not worried in the least little bit. When I was first diagnosed Xtandi and those types of drugs were not even available. Guess the Xtandi has run it's course. So what's next? I don't have a clue yet but I finally figured that worrying about does no good. This is a roller coaster ride, just hang on! Best of luck!
I agree that it is hard and our family and friends really don't know what to do. I find my grown daughters an d their families want to pretend all is well. For my part, I don't want to remind them either because there is nothing for them to do about it. It is better to live their lives than be worried and doting.
However, I do occasionally feel hurt by the lack of even a phone call to say hello and see how I am doing. I remember when I was their age and life was very busy, between work, kids, renovating our house ourselves, etc.
I totally understand what you mean though. I feel like as much as we are able to participate like we used to, even if it leads to exhaustion, being a part of their lives , especially during holidays is worth it.
They do care about you but they may not be able to deal with the idea of you being so sick. Unfortunately, death and dying is not something our society knows what to do with.
Try to stay positive and make every moment count. When you feel good, do something you enjoy. When you are tired, take a nap. When you are sad, let a close family member or friend know and talk for a while.
You need to feed your joy, what brings joy to you, painting, running, cycling, skiing, chess, what is your most joyful activity, If you already know what it is your half way there, now find time for the joy it brings you to suffocate the pain and fear of PC.
...and I know that the family is trying to 'jolly me along' and be positive, but some days I just feel knackered and can't do the washing up. Some days I feel good though and my beautiful wife and I are trying to have more weekends away. You are completely right, the mental loss of 'usefulness' is the worst aspect of all of this.
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