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Re: Checking in.....STILL here, question for NED'ers

Posted: Sun Jan 17, 2016 3:52 pm
by Cj51
I'm finding this an interesting and validating read. As grateful as I am to still be here, I'm also dealing with a lot of leftovers from the cancer treatments. Neuropathy, ongoing bowel issues, vaginal stenosis, hearing loss and memory and brain issues, etc. Much like everyone else here.

I don't usually say anything when people assume that I'm "just glad to have that all behind me", because I don't really want to share it. It's one of those things people wouldn't understand unless they'd been there.

Best to all of you,

Cj

Re: Checking in.....STILL here, question for NED'ers

Posted: Mon Jan 18, 2016 6:11 am
by PainInTheAss
I know, it's like telling a group of molestation victims that your dad was emotionally unavailable. Acknowledging that it could have been much worse doesn't give you a happy childhood or mean that you don't have valid reasons to feel disappointed.

NED is another stage of cancer treatment. I like that.

Re: Checking in.....STILL here, question for NED'ers

Posted: Tue Jan 19, 2016 9:26 am
by jean60
Rob in PA wrote:Thank you all for posts...definitely makes me feel I'm not alone..butt not in a good way.


Rob in PA, thank you for this post that I have read through several times now. This is one that makes me feel I have something to add and makes me feel that I am not alone. I get the sense from reading others' responses that you have accomplished that for a lot of others.

I've had two cataracts, one fixed. One eye that waters like crazy..they tell me that's from dry eye. ?? Worst is the neuropathy in my feet that just gets worse, the venous insufficiency that has developed (I had a DVT during second round of chemo). Arthritis pain is BAD and becoming almost constant. Vaginal stenosis. Balance is a joke. Circulation, energy, functioning mind, ahhh, I don't know any more.
Like everyone else, YES, I am so grateful to be alive. But I don't know what to say to people who ask about my health either. I am supposed to be FINE now. If I make any mention of issues, some people have let me know (very quickly) that I am ungrateful. So, for the most part, I just say I am fine and walk away. And frankly I feel more alone all the time because of that. Posting on this thread was a good small step away from that...THANK YOU Rob in PA

Jean

Re: Checking in.....STILL here, question for NED'ers

Posted: Tue Jan 19, 2016 12:56 pm
by Rob in PA
jean60 wrote:
Rob in PA wrote:Thank you all for posts...definitely makes me feel I'm not alone..butt not in a good way.


Rob in PA, thank you for this post that I have read through several times now. This is one that makes me feel I have something to add and makes me feel that I am not alone. I get the sense from reading others' responses that you have accomplished that for a lot of others.

I've had two cataracts, one fixed. One eye that waters like crazy..they tell me that's from dry eye. ?? Worst is the neuropathy in my feet that just gets worse, the venous insufficiency that has developed (I had a DVT during second round of chemo). Arthritis pain is BAD and becoming almost constant. Vaginal stenosis. Balance is a joke. Circulation, energy, functioning mind, ahhh, I don't know any more.
Like everyone else, YES, I am so grateful to be alive. But I don't know what to say to people who ask about my health either. I am supposed to be FINE now. If I make any mention of issues, some people have let me know (very quickly) that I am ungrateful. So, for the most part, I just say I am fine and walk away. And frankly I feel more alone all the time because of that. Posting on this thread was a good small step away from that...THANK YOU Rob in PA

Jean


Your welcome Jean, I am glad I decided to start this post...even though I knew it would sound as if I am ungrateful to some , Couldn't be farther from the truth, I am soooo very grateful, butt need to hear from others that I am not alone with my feelings.

Take care all,
Rob

Re: Checking in.....STILL here, question for NED'ers

Posted: Tue Jan 19, 2016 5:38 pm
by kirac
Wow. So glad you posted this. Somehow I also thought when husband got to NED, it was "over" except if it came back. Well, that wasn't true because of all the symptoms from treatment. We/he still hasn't figure out what he can eat, what causes diarrhea/upset 2 years past treatment. In fact, this past Christmas, I threatened to divorce him if he didn't put some effort into figuring it out. It may sound harsh, but I was tired of him being tied to the toilet. I realize that he may be tied to the toilet for the rest of his life, and that's ok, but I wanted him to try and elimination diet, food journal and meet with the nutritionist that worked specifically with the colorectal cancer patients. I felt like I could not rely on him with our kids or even for myself - that I was doing everything.

He finally made an appointment after I asked him to for a year to meet with the nutritionist when he realized I was serious. I want him to try and figure out what he can eat for his health and sanity.

Our friends know about his limited diet and constant bowel issues but they don't really understand the extent. This doesn't include the neuropathy and memory issues :(.

Re: Checking in.....STILL here, question for NED'ers

Posted: Tue Jan 19, 2016 11:27 pm
by teachpdx
kirac wrote: but I wanted him to try and elimination diet, food journal and meet with the nutritionist that worked specifically with the colorectal cancer patients. .


I've been keeping a food journal on and off since my reversal. It can be really helpful. What has worked for me recently is making sure I have healthy carbohydrates to snack on if I start getting an upset stomach. They help absorb spices/fats/bad stuff I should not have eaten. Just a suggestion because I know everyone is different.

Re: Checking in.....STILL here, question for NED'ers

Posted: Thu Jan 21, 2016 11:05 pm
by kirac
Thanks for the suggestions! You never know what might help so I appreciate all suggestions.

Re: Checking in.....STILL here, question for NED'ers

Posted: Fri Jan 22, 2016 12:00 am
by Nik Colon
Most info in my sig, but I do have to say that my mental state has been worse since I ended chemo. Imo, I think I was just focusing on fighting, getting the surgery done and chemo, etc. Now the mental and physical side affects are plaguing me. I haven't been NED long, the constant scans/scanxiety (not knowing what they will/may/not find), trying to get myself back to somewhat normal, and like most understand, others not understanding that it's still not over even if "they" may think it is. Some people (family/friends) get the concept but truly don't understand and it gets frustrating at times which in turn makes you feel worse in a way. I hope my words come across as I intend (sometimes it's hard to put my thoughts into words that come out right).

Re: Checking in.....STILL here, question for NED'ers

Posted: Fri Jan 22, 2016 6:20 am
by PainInTheAss
Yes, I forgot to mention the mental changes.

I've had some close calls and near misses with distracted driving. I started thinking that it was just a matter of time before I actually got into an accident. Then I did. I totalled my car. My airbags didn't deploy but I was wearing my seatbelt so I just got some whiplash. Now I'm driving my daughter's car and she is understandably nervous when I drive. I'm "not allowed" to talk on the phone when I'm driving her car. I've always been a really safe driver but now I don't trust myself that much.

I was joking with my daughter about something and I said, "Your mom's a little retarded these days." It sure does seem like it. Chemo brain, for sure. Chemotarded.

Re: Checking in.....STILL here, question for NED'ers

Posted: Fri Jan 22, 2016 4:25 pm
by LeonW
Nik Colon wrote:. . . mental state has been worse since I ended chemo. . . think I was just focusing on fighting, getting the surgery done and chemo, etc. Now the mental and physical side affects are plaguing . . . trying to get myself back to somewhat normal . . still not over . . . Some truly don't understand . . gets frustrating . . makes you feel worse in a way.

Thanks Nik, well said. Think I'm in the same boat / similar state. Realizing that things will never be the same again. Bad memory, slow brain. Changed personality. Trying to find a new balance with my dear ones, with me less being able to contribute. Being on the receiving end of help more than I like / used to be. Realizing that the losses are permanent;that will last as long as I last. Adjusting to this new life, while looking recovered, ain't easy.

Looking at your sig, I believe I'm about a year ahead of you. Let's continue beating the demon even at these costs; let's also enjoy what's left.

Re: Checking in.....STILL here, question for NED'ers

Posted: Fri Jan 22, 2016 6:40 pm
by Nik Colon
LeonW wrote:Let's continue beating the demon even at these costs; let's also enjoy what's left.

I Agree! :twisted: :wink: :mrgreen:

Re: Checking in.....STILL here, question for NED'ers

Posted: Sun Jan 24, 2016 4:36 am
by ullefan
Can't read a thread like this and not post. I too have suffered as much in "victory" as I did during the "battle." The day the chemo ended, family and friends considered me "normal" or "cured." Sorry to say that has never been the case. Have not been able to hold a job and recover from the bankruptcy cancer caused me. Family thinks I'm "mentally ill" or a "hypocondriac." If I felt "normal" I don't think I would be scared of cancer. But, when you feel sick all the time it's hard not to think something is wrong with you!!! Nonetheless, I did have a "clean" CT and PET in April of 2015. So I push myself harder than ever (wishing to die with my boots on.) I try so very, very hard not to complain to anyone. Keep telling myself this is the "new normal."
And now for the darkness that is in my soul. I believe that my life will never be fun again--so why live? All I care about is serving others (that justifies staying above ground and using up healthy people's oxygen.) Luckily, my mother is 82 and in need of care. If I can't hold a real job, then what I do for her gives me reason to live. I simply CANNOT find any joy in what's left of this body/mind. I embrace "life is suffering" and "I'm here to help the normal human beings (the one's ignorant to the horrors of this world.)" Like I said, it's a dark place--but it keeps me from suicide.

Re: Checking in.....STILL here, question for NED'ers

Posted: Mon Jan 25, 2016 4:28 pm
by Rob in PA
ullefan wrote:I simply CANNOT find any joy in what's left of this body/mind. I embrace "life is suffering" and "I'm here to help the normal human beings (the one's ignorant to the horrors of this world.)" Like I said, it's a dark place--but it keeps me from suicide.


Wow,I am so sorry things have not been going well for you ullefan. I get the "friends think I'm cured and back to normal" thing as im dealing with that also. I too tend to push things into the high risk category such as quad riding on dangerous trails,, running my backhoe where I probably shouldn't, electrical work even tho I'm not an electrician ...etc... just because of the whole "dying with my boots on" thing you spoke of. Butt, I manage, and I'm loving the life ive been given...just still have many bad days and nobody butt my wife and you guys "get it".

Re: Checking in.....STILL here, question for NED'ers

Posted: Mon Jan 25, 2016 8:04 pm
by Nik Colon
Life may be the same, but I can tell you, living with depression, anxiety, etc, most of my life...it's doable. I lost my bf to od and bro to suicide which made me think different. It's not always about us! Yes, life sux at times, many times, but if you have ever been on the other side of it you would know it's much worse. I don't always want to be here but I now know the pain it causes others.

Re: Checking in.....STILL here, question for NED'ers

Posted: Wed Mar 15, 2017 6:10 pm
by GreenMonkey
Hello Everyone,
I took a time-out from the forum because I needed to focus on a life without cancer butt... we all know that's not possible. Memory loss and neuropathy were my only real complaints until now... this constant urge to crap after eating is seriously cutting into my quality of life. I spend more time in the bathroom than I do in bed. This has been getting worse over the last 3 months. I don't know why. I recently had a colonoscopy (waiting on the results) and I was totally normal after the anesthesia. So... this tells me I just have to slow my system down. Does anyone know how to do that???

glad to see so many of you, miss those who are no longer here... :((((