New member thoughts on being "cured"

[Louise]

New poster here. My second post. For a year I had bleeding but was busy running shelters for fires in California so postponed being seen gastroenterologist until a friend dying from cancer urged me to please get a colonoscopy at once, and boom the news was made known then, and boom, I go to surgery and have six holes cut into my belly and send me through an extraterrestrial experience to wake up and be told all the cancer is gone and not spread to my lymph nodes or other organs, that I'm CURED.

I can hardly believe it. Cured? Did I become meat? Oh, "cured" as in "saved" -- only, I don't feel so saved. I feel like I've been hijacked by extraterrestrials. My surgery was six weeks ago and I'm just getting this new relationship with my gut, and sadly the day of my surgery, my friend was buried. So I am cured per his urging to get me checked out. All my loved ones were dismissive, telling me that I couldn't have cancer because I'm a 'positive person' (whatever!) and that I needed to not think about cancer or could bring cancer on -- that's a load of superstitious nonsense. My cancer is congenital and my dad, grandma, aunts, they all died from colorectal cancer. They are not with us because we have new technology which can detect earlier and help cure people.

But I must admit it's a mindset because when I hear I am cured, I don't believe it for a minute. In fact, I feel bitter some to be told I'm all cured when I feel like I just would like to die. This pain is incredible and the war on drugs has affected my pain relief, therefore I'm having to look into alternative medicine. I identify as "cancer patient" since I am still near the surgery.

I just anyone who's been "cured" here can go back to life as they were before... because if not, that's not really a cure but acquired disability so I say be sensitive to people who've gone through hell and back because while what's left of their body can remain on Earth, there are parts out there that feel they've been hijacked by extra terrestrials. Let me tell you, I was awake in the operating room and took note of all the lights and high tech computers and DaVinci roboarms with little hands and all the wires and corded pipes that would jack into me and compartmentalize my body... some holes were to pump in helium for blowing the skin around my flesh and bones into a Macy's Day Parade balloon (i kid you not -- that's done to make room for the stadium lights) -- next lights are tricked out to illuminate one robotic hand for slicing and dicing, the other robotic hand for grabbing and pulling then carrying to suction tube in another hole of the body. Meanwhile face is packed in plastic and nostrils and throat are intubated. Somehow I saw all this and yet was unconscious. The brain is a magnificent creature of recording events. Just because we were anesthetized and out cold doesn't mean that while we slept that we weren't present and conscious on some level, which is distressing some.......

"cured" to me does not quite match to par what "cured" ought to be because the word should be "nipped" -- I feel like my cancer was nipped in the bud and that my gut was nipped to save my life. That's not a cure. That's still a robbery -- somebody got a piece of me! Of course I want my colon back, but it's gone and if I could go through another surgery like this, I don't know if I would have that strength. It's so humbling and painful. As of right now I'm still in it and feel no way near cured. Nipped most certainly.

[KimT]

I think having cancer changes us. I am considered cured from two different cancers. While my body does not function as well as it used to, I count my blessings.

There are many people who will never hear the word cured, many people who will never ring the bell upon completing chemo. I’ll take my lot because I know it’s better than what what other people go through.

[stu]

To me clinically cured is a very different thing than fully recovered . From just observing my mum that can occur at may different points along the way .
Take special care of yourself ,
Stu

[boxhill]

Sure, cancer changes a person. (Although I have to say that I am not in mourning for my appendix, cecum, and 30% of my colon, nor my malignant lymph nodes. I'm just glad that all the cancer they could find at that time is gone.) As someone who is Stage IV and lucky enough to respond to Keytruda I sometimes wonder if there is a point at which I might feel and actually be "cured," and will I ever feel truly free of cancer again?

BTW, how could your "loved ones" assimilate the cancer deaths of so many relatives and STILL blame it on their lack of "positivity"? Are they Christian Scientists or just garden variety idiots? (Sounds more like a family with Lynch Syndrome. You might want to look into it. Urge them to take a fecal test or get a colonoscopy.)

If you are six weeks out from laparascopic surgery and still in "incredible" pain, there may be something wrong somewhere. That is not normal, even for those of us who had open surgery.

As to "cured," maybe it would feel more realistic to you to say NED, no evidence of disease. You'll have scans going forward. The sad fact is that in reality no one can REALLY assure you that you are "cured" at this point, at best they can say that you are NED and that your chances of avoiding a recurrence are stastically in your favor. Some people are considered officially "cured" 10 years out.

[Ron50]

G'day Louise. When I was dxed with an aggressive stage 3 colon cancer,my colon cancer surgeon had a talk to me. He asked me if I realised how many things actually have to go wrong for you to get cancer. Lots but once you have fulfilled the requirements to get cancer you will always be in the loop. He said you will never live normally again but as a survivor. I am happier to be a survivor than to think I am cured. My surgeon told me he thought I would survive around three years. Once again I am happy he was wrong. I still have scopes and an occasional cea test. I have seriously bad neuropathy. my kidneys are stuffed and I have to take cyclosporine twice a day to keep them going. They call all of my problems auto immune. I call them long term side effects of chemo and other medicine. I have type two diabetes (from prednisone trying to fix my kidneys) I have all sorts of heart problems including atrial flutter and atrial fib. I take another nice drug for that----Warfarin. I actually retired from work at the end of December after 57 years. If I can make it to 4th april I will turn 70. I have survived cancer for over22 years and that will suffice instead of being cured. Ron.

[JJH]

... Lots but once you have fulfilled the requirements to get cancer you will always be in the loop. He said you will never live normally again but as a survivor...

Yes, this is more-or-less the way I view it. My doctor told me, "Once you have cancer, you will always have cancer." In addition to the ubiquitous circulating cancer cells and possible micro-metastases floating around, there are the long-term effects of the various cancer treatments (surgery/chemo/radiation).

If we manage to make it all the way to remission, then at least we are still alive, and that's what counts the most. But we nevertheless need to maintain constant vigilance if we wish to keep our "survivor" status.

[DarknessEmbraced]

Cancer has definitely changed me. I had an open surgery so I had 23 staples in my abdomen. I had an epidural put in while in the OR so my pain was good for the two or three days it was in. I wasn't prepared for the pain when it was taken out but dilaudid helped. I was very nauseous the first two or three days from the anesthesia. When they took out the urinary catheter the first time I couldn't pee due to blood clots in my bladder so they had to put the catheter back in. Thankfully, all was fine when they took it out the second time. It took me several month to regain my stamina. I was told that my digestive system would be back to normal within a year. What I've learned is that my digestive system will never be the way it bad been before surgery. I am very thankful that I was stage 2a and didn't need chemo. I have been cancer free since surgery in 2014! You will adjust but it takes time.*hugs*

[ANDRETEXAS]

I don't use the term "cured" in reference to my bouts with two forms of cancer. I've adjusted my mind to not think of it on a daily basis. I have definitely made adjustments to my life as far a diet and exercise is concerned. I prefer to say there is "no evidence of disease" in the context of my cancers. I think dwelling on cancer and the word "cure" CAN be debilitating in attempting to live a cancer-free life. I don't begrudge or condemn or disapprove of anyone using any term they like for their situation. I just find it more desirable for myself to live my life the best I can for ME. The subject of cancer is relegated to when I see it on TV or someone asks me about it. But as soon as it's discussed, I go back to the mindset of living the life I want, but also remembering, as stated earlier, that there were patients who didn't get to ring the bell after chemo. I talk to myself positively about being healthy and things i can do to stay that way, and so far my mind and body have cooperated. In the recesses of my mind I know I could get cancer a third time. But for me, that's something I will worry about if it ever occurs. Party on Garth! Party on Wayne! Peace and health to all !!

[zx10guy]

I agree with the others on the topic of using the word "cured". I appreciate doctors being very optimistic as this is really needed for cancer patients who are in an extremely vulnerable situation. But I feel it was irresponsible for your doctor to use "cured" with you; especially at such an early stage in your treatment. NED (no evidence of disease) should have been the proper term and what your doctor should have used.

You'll see discussions as to when one might be considered "cured". The golden mile marker is 5 years. Many doctors feel when you cross that threshold, your chances of having cancer again falls in line with the general population. But I've learned that even past 5 years...10 years even, that this wretched disease can still make an appearance.