Do you ever feel like enough it enough

[IrvineFriend]

Hi,

everyone on this site is so positive and searching for new treatments. Anyone just want to let things takes its course? I don't have a death wish, but sometimes I must want to stop all meds, appointments, (am not married and do no have children) so in reality I'm not here for really anyone other than my parents, sibling, cousins and friends. It's not like a car accident, here today going tomorrow. People with cancer get to hit their bucket list and say good by to those I love. And leave money for my family. Just wondering if anyone has been to this this spot. Probably just a phase but I don't want to attend anther appointment. I'm NED but when I hear about spread, I don't want to do all the appointments and struggling my schedule for what is inevitable.

-Julie

[michka]

Hi Julie! You did well to tell us how you feel. Yes, I feel like giving up sometimes and I figure many of us do BUT when this happens I first ask myself if I really want to die or if I am just tired. So sometimes I cry and I feel better after or sometimes I listen to music or go outside to look at the trees, the flowers and the sky and the bad moment passes.
Why are you thinking of the worst? How often do you have appointments and tests? Maybe you have too many. You can skip the next ones. What meds are you taking? Some can really make us depressed. Do you work? Do you like your job? Did you leave on vacations this year even for a few days to change environment?
I am asking all these questions to better understand.
You are still far from facing the inevitable so try to get rid of what you do not want to do in your life and take care of yourself by doing new things. i.e. joining a Gym, taking care of other people, learning to garden, to cook, to dance, traveling , going back to school, starting to paint, to sculpt. Did you ever visit Paris? London? Venice? Go to Hawai? If this is too far or too expensive, find a place in the US you always wanted to visit, go with a group.... whatever... anything new that will make you meet new people.
On this forum you see bad cases but I know so many women since 2006 who never turned stage 4 although they had large tumors at dx . They just live on. We also know of stage 4s who have been here for years and who also live on.
You cannot erase the fact that you had cancer but you can maybe change the frequency of your appointments and look at this forum less often. I would not recommend you stop all follow up but you can certainly take a break . You seem to need it. And on this forum, we can understand that. Hugs!

[Juls]

Hi Julie
I think we all have had moments like this! Great post from Michka with good ideas. I'm guessing you work a lot of hours. Maybe a holiday or break is worth a thought. Had this thought myself this week only to discover I couldn't run away to the sun as passport expired!!
Take care
Juls

[Carol Ann]

Hi Julie! I so hear what you are saying ... these thoughts go through my mind too. In the end ... my biggest thing is, I just do not want to be in pain! That is my biggest fear. We all die in the end.

At what point does a person say, I have had enough ... of chemo/treatments/NED followup checks ... ?! You are right ... if your tumor biology says it will metastasize, it eventually will and there's nothing out there right now to prevent it.

Maybe I'm not helping you find the answer ... but I wanted you to let you know you are NOT alone in feeling this way! I don't know the answer, either.

Look at it this way ... what is the worst that could happen if you skip an appointment? IF it had come back/spread, you would have more time NOT knowing, unless you suddenly find yourself in pain, which, according to my oncologist, is the big red warning flag for mets. And then you would have a warning sign ... and you would have to decide whether to go see the doc, if for nothing else than to get pain meds.

Can you live with that? In the end, you have to decide the extent of the uncertainty you are willing to live with.

Yes, I wrestle with this constantly, too. Because my tumors were both estrogen positive, I am on the Arimidex ... and for now, I am not willing to stop taking it because I want to be able to say, "If it comes back, I did everything."

That is working for me (as well as any decision works with this mess!) for now. One day at a time ... I tell myself as I have a huge hot flash that is so intense it is a panic attack!! So I tell myself, "That's not me, its the meds. " My way of psyching myself out to get through another day!

Which is what we all do. It is all a coping mechanism.

Juls, you have the right idea ... keep one's passport current at all times!

I am so glad you posted, Julie! I think of you just about every day. (insert heart icon here. )

Carol Ann

[Donna H]

I completely understand your feeling. I have only been on this roller coaster ride since March 13, 2014 (date of dx) but I want off. I dont have a death wish either but recently I have spent a lot of time thinking about my treatment, how my life has changed and what I could have done differently if I had more knowledge/insight earlier. Of course hind sight is 20/20 and no one can predict the future. In some ways my cancer dx has inadvertantly brought me great joy and friendships and opened my eyes. For that I am grateful. However, the treatment has really done a number on many other parts/facets of my life. I guess until I have to face a recurrence (and I sure hope that day never comes) I dont really know what course of action I will take. But I am very thankful for this site. So much great advice and insight.

[ariana]

Donna H. I am asking myself that right now. Small lump nothing spread to lymphnode.
Best case you can ask for. Just found out --six tiny spots on lungs now. HOW AND WHY.

I will go through 3 rough chemos, and a total of 3 months once a week chemo and pills
after that IF IT WORKS without starting over again.

I bought my cemetary plot, made my funeral arrangements.
I will fight till the quality of fighting is not there.

For Pittsburgh Pirate fans of the 60s/70s world series champions.

The Pirate Pitcher wife came down with breast cancer and refused
to take anything , was sent home with hospice WHO walked out 6 months
later ( she was suppose to die in 6 months) and she died 2 1/2 years later without chemo.
I saw her off and on and the quality was there. Which is all I want is quality not
qanity.

[Mtngrl]

I can't say I've ever felt that way, but I can certainly understand how a person could get there. Being a cancer patient is like the world's worst part-time job. You can't quit, they don't pay you, and it's boring, painful, and frustrating.

I think Michka's comments and questions were very insightful.

The things that keep me from dwelling on my "world's worst part-time job" are learning new things, inventing/creating, and studying/interacting with people. Sure, I get down sometimes, and when I feel unwell I don't have the same level of motivation, but there's so much to see and so much to learn. I completely agree with the "quantity, not quality" ethos. But, if I can have a good quality of life, I want as much quantity as I can get.

Have you read Being Mortal? It's not directly on point, but it's about clarifying what we really care about as we face grim diagnoses, and deciding what we're willing to "pay" to have what we want. It's actually about the horrifically bad way most families in the US handle end-of-life planning, but it's very thought provoking and insightful. Maybe you'd like this book.

I'm not judging you or arguing. I'm just making some observations.

Blessings.

[lkc Gumby]

Yes , Julie, i hear you. its ok to feel this way. but tomorrow is another day, and hope abounds.. hold onto that.. which is what gets me through my darkest days,

[Heathcliff4]

Amy, your comment about being a cancer patient being "The world's worst part time job" is so hilarious and perfect. I laughed out loud.

Julie, I do know how you feel. In my mind, I often go over the "what if" scenarios and how long I can tolerate x treatment for x type of recurrence. I think of all the gals on here who are on Herceptin and Perjeta (or some combination) and keep going for years Obviously, that's wonderful and I derive so much hope from it. However, I remember how crappy I felt on Herceptin alone.

A good friend's husband didn't do treatment with his second recurrence of a rare melanoma. He was 42 at the time, just gotten his career off the ground after 8 years of dealing w. this crap on and off. I was diagnosed and going through treatment at the time & kept thinking, "why isn't he getting his scans done?? why hasn't he started a trial? what is going on??" I never asked, but in my heart I think he had had enough. He died within 5 months of his 2nd recurrence and went to work 2 days before his death. Good for him.

This site is so helpful and I have seen your posts and really appreciate them. Hang in there.

Kathryn

[Pamelamary]

Dear Julie,
This is a hard topic, as evidenced by the lack of many responses. Even though I am doing well at the moment, there are days when i feel just so sick of having to live in Cancerville.....
I do know that the time will come when I have to go back to the really "hard" treatment. I also know that I won't be able to persist with the succession of chemo after chemo that many women have done. I called a stop to the Docetaxol some years ago because I didn't feel I could go on. Maybe if i had done some more like the oncologist suggested I would have got to NED. But I was so feeble and pathetic, I couldn't go out for a walk alone!??!!
Nevertheless, I support what Mischa and Amy have pointed out so well - I have learned the amazing resilience of the human spirit and while there is life, love and laughter.....
Best wishes..... Pam

[Colleen]

Julie I hear you loud and clear! Being a cancer lifer, stage IV at initial diagnosis, I get very overwhelmed with the constant doctors appointments, tests, scans etc., it is never ending nor will it ever end for me. Just trying to plan simple things must always comply with my 21 day calendar for my Herceptin/perjeta infusion is trying. Perfect example, this week my youngest is moving into her dorm for the school year; she is a x-country runner for her university so had to report before the start of school for training and competitions. She is in temporary athletic housing and has to be out this Thursday with her official dorm move in on Saturday, that's a two day gap in housing. As her mother I was concerned about appropriate accommodations and feel I need to get to her and put her in a hotel (also help her move in and hug her) but its my 21 day cycle on Thursday with an afternoon appointment. My call into the oncologist office did not get returned for over a week so I called again with a promise someone would get back to me later in the day, that was yesterday (Monday). I called again and finally got to speak with the scheduler/warm body and get the appointment moved to an earlier time so I can get on the road with a reasonable arrival time. In the process I felt like I was treated with disdain for needing to change my appointment. I understand we all have our "junk" going on at times and it is hard to stay "sunny side up" but I am so tired of all of this! But the one thing I do when I get tired of all this I try to remember the things I am grateful for and create goals for myself to achieve. I refuse to have a "bucket list", mine is an idea list/accomplishment list. Sorry but the movie Bucket List just gives it the wrong connotation for me, I refuse to think of myself as dying because I am thriving despite being stage IV.

Dx 11/04/2013 stage IV HER2 neu; 2.5 cm mass right breast, 6 nodes involved including right axillary, small mass on dome of liver too difficult to biopsy
11/13/2013 start 6 cycles taxotere, Herceptin, perjeta every three weeks
01/19/2014 syncope episode; six stitches to chin 4 cracked teeth
01/27/2014 meet with neurologist for syncope
01/29/2014 Brain MRI all clear; no missing parts and no extra parts
02/27/2013 last cycle with taxotere, yay!!
Continue Herceptin and perjeta every three weeks until eternity?
04/22/2014 PET/CT scan shows NED! Yay!
05/20/2014 2nd brain MRI all clear!
08/28/2014 PET/ scan NED CT
21/2014 MRI with contrast of breasts; all clear
05/22/2014 rebiopsy original tumor sight no cancer found!
02/04/2015 PET/CT scan still NED!!!
05/22/2015 Mammogram clear!
05/18/2015 Brain MRI clear!!!
05/18/2015 issue with echocardiogram redo in six weeks
07/02/2015 echocardiogram good!!!
08/18/2015 PET/CT NED!!!

[Tresorgh]

I am agree with the view.Thanks for sharing.








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[Juls]

Hi Julie
Just re-reading this. Hope you are OK
Juls