My neighbor who is undergoing treatment for pancreatic cancer and I compared note on what folks who don't have cancer say to us and our thoughts, although we won't say them out loud. Heres our top 5.
5. Gotta stay positive. Like thats a must do. Try chemo, surgery, constant fatigue, etc some time, dude.
4. You got affairs in order? Yep, do you?
3. We are praying for you. Thanks, this one may be beneficial in that um hitting my knees often for spiritual guidance or comfort.
2. Call if you need anything. You know, the phone works 2 ways. Give me a call and see if I need something. Or just visit. I've got a bunch of other things on my mind right now.
1. You look good. This one is the punch in the face statement. Just how should I look? Should I have a sign on me saying cancer patient? Should I look like how movies depict people dying from cancer? Sheez, I am looking like this because I can and sometimes its a bit hard to do so.
So there's our rant. Feels good to let it out. I know most of you go through the same. I'm with you there brothers!
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Maleko808
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I always get you look healthy. Yep you can't see the bags collecting my urine and my thoughts of "is this treatment working"? My wife and I were amazed at how many friends dropped off the radar when we announced that I had Stage 4 metastatic prostate cancer. We do have a great core friendship group that really help out when we least expect it. True friends. So look healthy and stay positive!
I will see all five of your examples Mr. Maleko and raise you with this one line for the win.
One constant complaint I have seen in other Facebook support groups is when people say, "Prostate Cancer? Oh you have the GOOD CANCER."
Honestly I get it, they're trying to find something uplifting to say, and if someone is lucky enough to catch it early and not stupid enough to do something like Coffee Enemas or Baking Soda and Maple Syrup (yes both are ALTERNATIVE treatments) the sky is the limit with treatments.
Personally speaking, since my humor is warped 6 ways to Sunday, I don't think I could stop laughing if someone said that because.... well let me give you the basic timeline after my stage 4 diagnosis.
1) I was diagnosed with a PSA of 2450 a month before my 42nd birthday.
2) When I had the operation to keep my balls but remove the balls ability to produce testosterone, the antibiotics I used made me run to the toilet about 20 times a day with explosive shits before I realized the problem was the medicine. It drove me fucking insane. I drink enough water so it's not a problem but that pain was unGodly.
3) The hormones in my body went absolutely INSANE making me feel INSANE adjusting to lower testosterone. The only thing that saved me was a high fat diet to balance myself out.
4) There was some devastation finding out my hormone medicine that was supposed to last 2 years lasted 9 months. I was fortunate enough that when I got off of it my PSA cashed for like a year.
5) I had bad on again off again pain in my rotator cuffs in my shoulders and I thought it was just pain from being fat since I'm around 300 pounds. It didn't occur to me that was the cancer metastasizing. I felt like a fucking idiot because that was how I got to stage 4. I just thought the aches and pains were from being overweight.
6) When my PSA started to rise, I thought I was okay with a super cheap generic version of Cassodex for like $5 while I was in Thailand. It only worked for a month.
7) I'm on new stuff which seems to be working fine. I'm also back home here in FloriDUH and have some insurance that should kick in on the first of October. My PSA was rising a tiny bit for the last few months before my final appointment in Thailand June 30th, but my doc thought a small adjustment in my medicine should make it plateau or go down again.
While waiting for insurance to kick in and my new doctor for the first time is a little frightening. I know to reduce the physical pain I need to lose weight. With all the distractions and stress from the past month, and especially being able to finally get some insurance, kicking in I can focus on that. PLEASE DON'T GIVE ME DIET TIPS. Just like cancer, nutrition isn't a one-size-fits-all type deal. I know what works for me, and I used to be super athletic before blowing up, so I know what my body needs to deflate.
Up until the time my insurance kicks in any little ache or pain is always going to worry me and make me think, "Fuck me, is this thing metastasizing again?"
With all that said, to bring it back to the original point, that is why I am always going to LAUGH MY ASS OFF, if someone ever says I have the "good cancer." I'm not going to be a dick and list off what I did with you guys. I just did that for us, I'm just going to say, "I appreciate the kind words, but trust me, this isn't the "good cancer."
I hate people who, in front of the comment about the diagnosis of prostate cancer in stage 4 only say: but was not done periodic PSA tests? Don't you visit the urologist regularly?
I concur 100% and we must continue to correct and educate them more about advanced PCA as many just don’t know the true facts and reply with ignorant comments.
That’s not really a rant. I know what you’re saying. People say stupid sh@@ all of the time. Most have so much fear of cancer that they don’t know what to say ..? Like Deer in the headlights , folks don’t much like the subject. I don’t blame em . I don’t like it either. We learn to let it all run off of our shoulders ... I had tubes and foley and was in real desperate shape for two years. My urologist that dxed me said” There is nothing that you can do to live beyond 36 months. “ TG I’m at Over 67 Months now and still counting. It’s all gravy for me . Until it isn’t. My current MO tells me “ You look great” ! I thank him. He didn’t know me prior .. And he hasn’t had to do anything to me since we met 3 yrs ago.. I told him that he’s the “best kind “of dr because he doesn’t have to do anything yet , and that he and I can just be friends. ✌️
Your list is a good compilation of the stupid comments people make. I had a neighbor say, “you’re lucky that it’s prostate cancer as you’ll probably die from something else...”
Hell, I'll bet most urologists say that. Mine did.
• in reply to
My first MO said I had "The best kind of cancer you can have." I guess I'm one of those people who just have to have some kind of cancer so why settle for anything less than the best?
I haven't seen that many people outside of my family since diagnosed. I have a mother in law who lost a husband to cancer who kind of gives me the how are you doing sad face look every time I see her. She is concerned because I lost a good amount of weight since I saw her last. She's not too impressed by my long bike rides and other activity and my plant based diet. I don't blame her she had it hard, her husband had the bad cancer. I should tell I have the good cancer maybe she will look less concerned when I see her tomorrow. I was at a party with some neighbors and they asked a few questions which I did not expect but one of them said, well so your good now right? I guess my just being there they thought I was cured. I have a friend that assumed radiation meant chemo but I didn't feel the need to correct and explain. My family is incredibly supportive at the same time they really don't need the details anymore, again no problem they can't remember anyway so I keep repeating myself. Early on I told my wife I didn't need her to go to appts with me and she hasn't. She seems Ok with letting this be my thing. Lucky me. One friend said he didn't know what to say to me, I said I don't know what you should say to me either. I have a better idea now. I keep telling myself to live my life as normal as possible in between PSA tests and Dr visits but how do I do that? Everything in my life is now viewed through the filter of PC. But I keep trying so if anybody out there figured out how to do it let me know. Thanks Maleko808 didn't realize I had these things semi-festering. I feel better now.
I’m so sorry that you’re going through this. I’m guessing that a lot of your friends are really into fitness and have a hard time dealing with the fact that someone who appears to be in great shape has such a serious illness. They could learn from your experience, but sadly they won’t. Your friends reactions are a reflection of their fear, and almost undoubtedly have nothing directly to do with you.
They look at me with a smile there are mirrors in the gym so j can see their response after I have passed it's that sorrowful shake of the head that tells me
I am sorry for you
Thanks I appreciate it but I am still Denver no less
Maybe a bit more today lol
The sun is shining in England Hatfield today
Staying on top of the garden as I have so much time on my hands and still fit
My loving beautiful wife is curled up asleep and I am looking at this powerfull woman who held my hand when diagnosed tears streaming down her face
She said Denver
I just cant lose you
We are gonna beat this fuucker
Promise me you fight like never before because I wont stop
That alone put fire in my belly and a prayer in my heart
I sleep with an angel every night
And wake up with Wonderwoman
I am a lucky lucky man
In some aspects
Have a weekend of moments
Love live rejoice as long as we are here there is a chance
I agree most people just don't know what to say or want to not say something stupid. Larry David curb your enthusiasm had a episode about never being able to be friends with somebody with cancer. Larry thought he had it. I found it pretty funny and insightful, of course he has no class what so ever.
I once worked to construct some loudspeakers for a customer who developed pancreatic cancer, and that was in 2012, and he thought he'd beat his PanCa and said to me once, "Ya know, we are in the same boat mate" because both of us had cancer, mine being Pca.
I agreed of course, to be polite, knowing he had only 9 months left at most. I was worried he might die before I finished the speakers but I got it all done OK and he paid me OK. In less than 9 months he was dead, a big disaster for his wife and 4 teenage sons. I'm still alive, and very healthy despite being at stage 4 with Pca, and still with options for treatments.
So we were not in same boat. Steve Job also died of pancreatic cancer, and I guess a rich man like him must have tried everything he could buy. Its so much worse than Pca.
One of my sisters got Oa, and she didn't like accepting she didn't have long, and despite what her docs did she didn't last long, leaving a sad 17yo daughter, and the rest of us.
Olaparib was not yet invented then, but even so, Oa is just so horrid.
Many ppl don't quite know how to deal with friends or relatives who get cancer.
There sure are myths around when ppl see someone else get cancer, but when you have cancer you have to be tolerant to those who just don't quite understand, unless they have had some cancer and recovered. I know one man who had had cancer that was not of any well known type about 14 years ago, then an op + RT + chemo fixed it, then he got Pca, and RP seemed to fix it, but Psa went up again 8 years later so he has EBRT and he's now 80 and seems to be OK. He understands my little bother with Pca. We spent time cycling together, enjoying jazz and classical music, never knowing how long we'd last. We still don't know.
Thanks for starting this thread. Like everyone else, I have had all these statements made to me and I politely accept them with a smile. A year before my diagnosis, a work colleague told me he had stage four liver cancer. It shocked me and I always felt awkward around him from then on. He died within a year. I remember how I felt back then when I see people now, I think they probably feel awkward too. So when asked How's things? I I just say I'm doing OK, how ru?
On a lighter note, I do love the black humour of the Oncology Nurses. I was a bit down before a chemo session one time and was grated with 'Morning!, what's eating you?' And my favourite........ when I completed my last chemo and began walking to ring the bell, they played the song, Bad to the Bone!! Gotta laugh 😂😂😂 DD.
Also get many who will do anything to avoid talking about it. Sometimes need to talk and if it weren't for orher cancer patients there would be no one to talk to.
Very true. When I was first diagnosed in 2012 I had all these lines thrown at me. On the other hand , gotta say my few close friends and family were very supportive.
In 2014 when I had throat cancer , then the same happened, with again family and few close friends really helping out. But by then the casual bystanders were giving me the " you're so unlucky " or the "what's wrong with you.?" faces.
Disgration:
Since I also have a degenerative eye condition that took 95% of my sight, I get the " so unlucky " quasi condolence often from casual acquaintance. The weird part is that I actually feel pretty lucky and grateful l for still being around alive and kicking anyway...
The other one is " you're such an inspiration " which I don't want to belittle since it comes from a good intention even if the cliche is beyond tired. People underestimate the strength of their inner self . I really think we all have it in ourselves. It's just circumstances forced some of us to find it
End of disgration
This year having joined the advanced Prostate cancer gang, I just kept it very private. I disclose it only when an explanation is needed. I don't need dumb comments and most importantly I don't want to be a topic in social events. I would rather enjoy people's company rather than triggering their somehow clumsy tap on the back. And I'll still be around in 10 years, they gonna look back and see me as an hypochondriac!! Lol
I recall a conversation I had with a young woman when I was on ADT. I was fatigued, sleep-deprived, sexless, achy, deeply depressed, lighting up like a Christmas tree constantly through the day and night, crying uncontrollably, and the sexless caused my marriage to be breaking up. I really was hoping for a massive heart attack that would take me out. The woman said, "Oh, my father had PCa. Almost no one dies from it." I said, "That's right. It generally doesn't END you life, but it sure does RUIN it."
Having said this, I'm not angry with these people, as they're trying to be helpful.
A guy in one of my support groups was talking about how he can no longer meet in person and talks by phone a lot more. People are now telling him "But you sound so good".
Another favorite of mine is: "But they are coming with new stuff every day!" I find it amazing that in just one short year there will be 365 new treatments available. I should be able to live forever at that rate!
Sad thing I’ve found with this stuff is men still don’t have any idea about it. My best one was a 57 year old buddy that pumps concrete for me.
I said I have prostate cancer when he asked why I haven’t used him lately.
He said what’s a prostate?
Prostate cancer month is not enough to inform everyone. We always seem to make it to the doc when we hurt. There needs to be money spent to find this crap early and I don’t mean waiting until your doctor feels a lump.
Perhaps your neighbor with pancreatic cancer might be interested in reading this PUB MED case report titled "Unresectable Pancreatic Adenocarcinoma: Eight Years Later". ncbi.nlm.nih.gov/pmc/articl....
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