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I made it. Why am I not ok?

FlyWithoutWings's picture
FlyWithoutWings
Posts: 2
Joined: Dec 2018

I've avoided these boards for 3 years.  Haven't been able to read other people's stories.  Here's mine.

4 years, 3 doctors.  I went to 3 different doctors with concerning symptoms and was blown off.  The first 2 didn't even recommend colonoscopy - "You're too young for colon cancer ... it's probably just a hemorrhoid."  The third doc said she was 85% sure it was nothing ... but she would refer me for a colonoscopy if I wanted ... but I'd be paying for it out of pocket.  I was trying to save up a down payment for a house.  I talked myself out of the procedure because after all, 3 doctors had told me I had nothing to worry about, right?   I was diagnosed at stage 4 with huge mets in my liver.  Not a surgical candidate.  It was devastating.  Im a single mom of 2 kids who were 10 and 13 at the time.  I'll spare you the details.  Oxaliplatin for 6 months, 5FU, Avastin for 2 years.  CEA dropped and dropped.  My oncologist said "you're outside the data points" because I got better.  Well, that's because I fought like hell to get better.  I read every article and used Cannabis in ways I don't want to talk about and went to Mexico.  In February of this year, I asked for a new scan.  "It won't change anything," my oncologist said.  It changed EVERYTHING.  The cancer was all but gone.  Now we were talking about surgery and CURE.  My body finally said NO to Chemo, and in the 3 months of no treatment, the tumor grew back.  My CEA went up.  It was still "NORMAL."  It was only 4.3 when I had my resection, but the tumor had grown back to almost its original size in my colon.  Resection, ileostomy, radiation.  Ended up in the hospital dehydrated and septic.  But then it all stopped.  I finished radiation.  I was cancer free.  I AM cancer free.  I don't feel better.  For 2 years I went to Chemo every week.  The oncology staff became my family.  Weirdly, I looked forward to seeing them.  When I finally started having heart symptoms from the 5FU (I always say because one FU just doesn't cover how nasty that drug is!) I just didn't go back.  No closure, no celebration.  I just disappeared.  I've had some proctitis in the months since radiation, and trying to figure out who is supposed to prescribe the meds feels like a game of hot potato, and I'm the potato.  The Medical Oncology staff, who supported me through every minute of 2 years of chemo, tell me to call Radiation Oncology, who were completely awesome during that part of the ordeal, but now tell me they are not in charge of my care, call Medical Oncology.  At one point, I was told I had to just follow up with my primary care.  I've met her ONCE.  In 12 days, I have my last (hopefully) surgery.  Ostomy reversal, and ablation around the scar tissue that used to be liver tumors.  Life will be "normal."  What is that, exactly?  How do you go on with no treatment, minimal monitoring, and wondering every moment if the cells are growing again?  No one understands why I'm not elated.  After all, I beat an unbeatable cancer.  It's a miracle!!  How come I'm not thrilled?  I avoid people.  It's all they want to talk about.  No one ever asks me anymore if I'm riding my horses, or how my business is, or what movies I've seen recently.  It's always that concerned face and "how are you feeling?"  So I don't go anywhere or see anyone, because I live it.  The last thing I want to do is talk about it over and over in every conversation.  I'm so much more interesting than cancer.  

So I'm here.  Can we talk about how hard it is to survive?  Is that a taboo?  Is it disrespectful of all those who didn't survive?  It was easier when I had something to fight.  I visualized those cells aPOPtasis-ing.  I visualized healing blue light every single day.  I DID all the things.  I fought.  Hard.  What do I do now?  I don't qualify for disability, so I'm working 60 hours a self-employed week to keep things afloat.  I'm stressed, my kids are stressed, they're acting like normal kids but I'm TIRED.  I don't have the bandwidth to absorb their tantrums.  I know they have been through a lot too but Im so tired.  I just need some peace.  

I'm trying out this "support" thing.  Someone tell me I'm not a horrible ungrateful wretch for feeling like this.  

Karen

flowerrod
Posts: 41
Joined: Jun 2018

unfortunately, i can't tell how life is hard after, because we are currently in "during" process. your story is actually very positive and motivated and i pray god eve and day to be cancer free. you should be thrilled and happy about it! however, i understand why you are avoidi people... we do it too, because everyone sees as "cancer" now... not what movie you watched? but how are you feeling today? it gets frustrating... so just try to enjoy every day and find something that makes you happy....

Trubrit's picture
Trubrit
Posts: 4517
Joined: Jan 2013

YOU ARE NOT A HORRIBLE UNGRATEFUL WRETCH.  

Welcome to the forum. You are the second person this week who has joined us in search of that elusive normal.  

Obviously, we can't tell you what normal is going to be for you, but we can help you find it for yourself.  

It is definitely OK for you to feel exhaused, both physically and emotionally. You have been to Hell, and haven't quite gotten back. The road looks to be long and hard, and you need to have a destination in your sights, or you may stay where you are.  You know what they say, if you stay still on the road you will get run over. 

I don't know how you can get your assosiates to treat your like a person and not a Cancer survivor - which isn't a bad thing, but needs to be balanced with treating you as a regualr person. Maybe tell them outright that for now, Cancer talk is off the table. 

You will hear from folks here who are years out and still struggling, wether its physically or emotionally. 

Stick with us, and I hope you find what you need. 

We have a few members who also ride; one of them, JanJan is taking a break as she is still fighting the beast, but I know you guys would have some horsy talk.  

Stay strong for yourself and your children. Stick with us and we can hopfully help you on your journey. 

Tru

 

myAZmountain
Posts: 113
Joined: Apr 2018

Maybe it is a bit like PTSD after being in the military--cancer patients have to be their own advocates so much and face the possiblity of death and have to fight tirelessly to heal. 5FU is a beeyotch of a drug but Avastin can damage the heart too?  I hate Avastin almost as much as 5FU.  Hopefully things will get better and you will get back on an even keel--be loving and kind to yourself !

FlyWithoutWings's picture
FlyWithoutWings
Posts: 2
Joined: Dec 2018

thank you.  

Flower, best wishes.  FIGHT IT.  I'm trying to be thrilled ... but there's still a lot of fear.  It's a lot like PTSD.  My secret?  I'm a trauma therapist.  I KNOW all the ins and outs of PTSD and trauma, but it's harder to live it than to help someone else live it.  In a way it's worse.  I feel like I know better than to feel this way.  Thing is, there's no pass on trauma.  Tru, thanks for your validation.  Been to Hell and not quite back.  Perfect.  Even when I don't FEEL hope I assume it's out there somewhere, and I"m headed toward it.  

Thanks for the welcome.  

K

Butt's picture
Butt
Posts: 95
Joined: May 2018

Life has different serious issues. When one aspect if life is fixed it doesn’t mean other ones are fixed. People cope differently. People who are very independent may not even miss those nurses. It helps theoretically speaking to have people in life who truly care and surround yourself with those folks but of course it is not always possible and it may not in any way be a fault if the individual. Butt.

feckcancer
Posts: 43
Joined: Jun 2018

I know right but it's a big fight that leaves you exhausted & once upon a time I used to believe that after cancer you would magically go back to normal. lol.

spend as much time as possible rewarding yourself & treating yourself to massages, counselling, painting, whatever makes you feel good because now you have to heal. the more you treat yourself with love the quicker this will happen.This is a 2nd chance. Do it with kindness to yourself . You will start to feel better soon but it takes ages. xx

ps: 

 

...Reach out for help if you need it, don't forget you have beat cancer. A huge fight. and you won. so you might need a bit of help.  

ron50's picture
ron50
Posts: 1697
Joined: Nov 2001

    My motto has always been surviving survival is not easy. . The medicos do not believe in collateral damage. It's not in their vocabulary. I've been at it now for nearly 21 years. It never gets much better but still I survive. At 68 I still work four days a week and go out fishing on  my own in my kayak when I am not too bad. Life goes on. All the best Ron.

Twinzma
Posts: 175
Joined: Jan 2018

Please don't feel as though you can not speak of riding yourself of cancer here! Everyone here has spoke of so many intimate and delicate things. I get that you are having a hard time, not that I am in this boat, but I can understand how difficult it is to adjust into a new normal. You just spent years hooked to machines, doctors and nurses you had to adjust to that new normal and I am sure that did not come easy to you at first as well. It is healthy for you to fear it, because deep down you know that you can not totally let your guard down. You, unfortunately have been through hell! You played over in your head every worse case scenario in your head but I doubt you played this one out. You hoped for it, but it's not the same as living it. Now as for the people in your life, well you have to forgive us on the other side, our intentions are well but we sometimes apparently like the taste of foot. We don't mean to but somehow, umph! there we go saying stupid things. So you need to put that foot down of yours and set them straight not in the mean way of course because they love you, but in a direct way something like "Look I am tired can we please move on and talk about something else for once".

Kim mentioned that you could have PTSD, and I am leaning a little this way too as Survivor's guilt is coming to mind. No you were not in a declared military war but you did survive a battle here and what struck me that you may have it is when you said " That is it disrespectful for all those that did not survive". You know the tools to help cope with PTSD because of your background so I would apply them to yourself. Just see if that may help you. No harm will come of it.

Working so many hours is exhausting as is raising a 10 & 13 year old (mine twins will be 13 next month) But maybe you can find some time to take a class or something to meet some new friends. Some fresh new ones that won't be all about the cancer. Don't abandon the old friends of course but even if you could just make one new one for your new normal, it may make your transition a bit easier. I hope that whatever you do that it will come to you easier, that this new normal will be a forever healthy normal. I hope you have a lifetime of NEDsville! Hugs!!!!

SandiaBuddy's picture
SandiaBuddy
Posts: 558
Joined: Apr 2017

The whole process beats you down and you have been through more than your share.  I bet if you give yourself some time and allow your body to heal from the many assaults on it, things will even out.  It took me a long time to admit how the physical assault stuck with me.  It takes time to heal.

beaumontdave's picture
beaumontdave
Posts: 830
Joined: Aug 2013

Karen, welcome. there is no finish line to this, in my experience. You just taper down from regular medical intervention to once a year checks, if you're fortunate enough. I think the PTSD concept is valid here because you go from a jacked up sense of your mortality and a battle for life, to "get back in the regular line of life and handle your sh*t." I've read about combat vets who came back and couldn't cope with the quiet, regular routine of everyday living. The other part is vexing as well, no break from responsibility/work, and your that poor cancer victim[ in my case, the guy who had it, and his wife as well, the cancer couple] so everything is "sad eyes and looks". The only way to counter is to put on that big happy, engaging face and push past that image they carry, or avoid socializing. It does get better with time and distance, I got used to the changes, business became more than motions to go through, and those I still had responsibility for, grew up. I feel okay with things while still knowing the scars are there, life isn't going back to whatever it was, and I'll never bury the quiet fear of recurrence that unaffected people don't carry. Time will help your emotional state, but help can be gotten to deal with the hard parts. I found just unloading here once in a while, kept me sane enough, I hope you get what you need as well......................................Dave

 

Kazenmax's picture
Kazenmax
Posts: 188
Joined: Feb 2016

I'm on my last treatment cycle and I'm scared to be off chemo. Like you I envision the chemo killing the cancer. What will happen when I stop? 

This is my second time. It came back on my lungs. I had 1/3 of my left lung removed. What if it comes back? What's different this time that would keep cancer at bay?

I keep thinking that when I get my strength back, I'll start walking again. I'll eat right. I did that last time and it came back.

Send like the fight never really ends. Somehow I have to be able to love my life without cancer. I honestly don't know how I will do that.

K

Annabelle41415's picture
Annabelle41415
Posts: 5810
Joined: Feb 2009

Sometimes we feel guilty when we have a better outcome than others.  You will feel this way for a while.  It's not normal for you to feel any other way as you have lived with your new normal for years.  Sometimes others never quite get normal, some move on with no problem.  Come on the board here and express your feelings.  We are always here to support you.  Welcome to the board and wish you could have come here earlier - we could have helped you then, but glad you are here now.  Wishing you the best in your upcoming surgery.

Kim

Lovekitties's picture
Lovekitties
Posts: 3288
Joined: Jan 2010

You have taken a first step in expressing your feelings...even if to the "unseen" on the board.  Think about that next step and expressing your feelings to the "seen" in your life.  By that I mean, for a start take one person from your "past normal" and have a heart to heart about your "new normal" and let them know you appreaciate their concern, but let them know you are now looking forward not back and hope they can do the same when with you.

You don't mention how old your children are, but you might also want to have a straight forward chat with them about needing their help, either in the chores department or at least in the tantrums area.  

You might also need to talk to yourself about what your expectations for you are...a 60 hr work week might not be avoidable for financial reasons, but you need to carve out an hour or more for yourself...meditation, spa like tub soak, reading a favorite book, listening to soothing music.  Whatever it is have it be for Just You.

We all wish for better understanding by others in our lives, but we often mistakenly feel they should "know".  Frank communications most times will help both parties to get to the right place.

Wishing you the best,

Marie who loves kitties

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