The nagging feeling...

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Mohrfamily
Posts: 140
Joined: Tue May 22, 2018 4:04 pm

The nagging feeling...

Postby Mohrfamily » Mon Mar 25, 2019 4:52 am

DH is no optimist. He's a fighter without a doubt but definitely a pessimist. If you have followed my other posts, Cleveland Clinic gave my husband 30 months give our take 1 week before Christmas 2018.

I am doing my best to be the supportive wife in this I don't need to remind him of what's at stake. I've tried all the positivity I can Its not "IS this my last summer?" Its more "I'm going to be here so what can we plan special in advance"

He still has that nagging pessimistic fear in the background. And because its still there he still has nightmares about it most recently this is his last summer. I've tried many times to explain we haven't had BAD news ::knock on wood:: every scan had come back with nothing new and shrinkage. But the constant "your not ready for surgery" "your car is tricky" just feeds that negative Nancy in him. I worry maybe he needs am anti depressant, but would he take it.

He says he's weaned himself off the prescriptions he's been given for nausea and the only one he takes regularly is the antibiotic for the vectibix rash. He did this to build his strength but also because he doesn't like taking anything.

What should I do, how can I help him live his best life in the now and focus on the good that's been driving us thus far.
DH dx officially stage IV with liver mets largest measuring 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.

Pyro
Posts: 275
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: The nagging feeling...

Postby Pyro » Mon Mar 25, 2019 7:28 am

I know where he’s coming from, I’m the patient with somewhat unknown cancer inside and on a new drug that doesn’t work for everyone. The stats aren’t on our side, and ive read 2 articles that say you need to divide the doctors life expectancy by 3, due to overestimation. Depression is real, even in people that haven’t had it before, I get what he’s going through. I wish I knew what to say to help, him or me, it’s a bad hand in the game called life. Keep him off the internet!
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

Lee
Posts: 5939
Joined: Sun Apr 16, 2006 4:09 pm

Re: The nagging feeling...

Postby Lee » Mon Mar 25, 2019 12:39 pm

Anti depression medicine may not be a bad idea. It has helped a lot of people in your husband's shoes. Maybe seeing a therapist might not be a bad idea either. Maybe he just need to vent his fears.

One thing that really helped me, kind of small and silly, butt really did help me mentally. I figured as long as I was learning something new each day, I was not going to be dying anytime soon.

I also tried to have one day every few weeks, when I did something fun. It was one day, I would not schedule appointments, and I would not think about my cancer. A vacation from cancer. It helped me.

Good luck, cancer can be the elephant in the room.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Milk Tea
Posts: 29
Joined: Wed Feb 13, 2019 1:14 pm

Re: The nagging feeling...

Postby Milk Tea » Tue Mar 26, 2019 12:17 am

Distraction really works for my husband. He insisted not to take many days off from work throughout his treatment. He only took one week off for his LAR colon surgery and one week off plus one week work from home for his open liver surgery. He believes working, especially going in to the office ( not work from home), distracts him and gives him no time to think about cancer. The interaction with colleagues, attend work meetings...etc make him feel normal and positive.

In the evening, we are usually busy talking with kids, watching TV/movies.. I keep him oppupied and distracted till bed time so he has very little time to overthink.

Sending you positive vibes!!
Wife to DH
09/2016: Dx at 50, CC Ascending colon, 10+ liver Mets
KRAS-Mut G12V, MSS, CEA 8
09/2016: Nearly blocked, Emergency colon surgery (LAR)
FOLFOXIRI+Avastin: 6 before and 6 after liver resection
01/2017: Liver resection, open, both lobes, 40% total liver cut, tumors either cut out or microwave ablation burn, all tumors are out
02/2017-01/2019 : Clean CT every 3-4 months, CEA between 2-3
06/2017-Present: Maintenance Chemo: Xeloda + Avastin

Mohrfamily
Posts: 140
Joined: Tue May 22, 2018 4:04 pm

Re: The nagging feeling...

Postby Mohrfamily » Tue Mar 26, 2019 3:58 am

The thing is he's responding to treatment albeit slow but still steady response. I think it comes from everyone saying your not ready for this or that over and over.

People react differently I take an aggressive approach to it maybe because I leave the house every day for work where he can't that I'm more "along" in that sense. But I hate hearing " what if.... This is my last summer etc"
DH dx officially stage IV with liver mets largest measuring 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.

stu
Posts: 1173
Joined: Sat Aug 17, 2013 5:46 pm

Re: The nagging feeling...

Postby stu » Tue Mar 26, 2019 4:16 am

Hi ,

I have a friend going through the same . She has a young family . One child has a learning disability. She gets consumed with fear for all of them and I totally understand that . She texts me when it happens and I gently go through the positive response to treatment she has had . Give her a little help back to an easier thought pattern for the rest of the day . Some days it’s enough to propel her forward.

On the other hand there is my mum who instantly dismissed the prognosis, which was grim back then and I can truely say never really thinks of cancer . I doubt she has any more control over her response than others have over theirs . I do wish my thought process was like hers . I am more prone to anxiety . All happening in the one family .

Take care ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

boxhill
Posts: 307
Joined: Fri Apr 06, 2018 11:40 am

Re: The nagging feeling...

Postby boxhill » Tue Mar 26, 2019 9:23 am

It's funny, reading this thread I realized that the one question I've n ever asked my doctors is "how long do I have to live." And I've asked a lot of questions. :)

In mid January, I started have a neurological problem that as far as anyone can tell is not related to CRC or Keytruda. Why exactly I am having these symptoms is not fully understood now. The neurology people seem lackadaisical at best and lacking in interest in finding out WHY. (The neurosurgeon, on the other hand is great.) Meanwhile, I've been put on a bunch of new meds, the latest of which is, I swear, killing me. It has depressed my mood, my energy, dramatically, it has made me feel zombielike, it has re-elevated my blood sugar just when I got it back down again. I've withdrawn form most of my activities. I've found myself thinking that I can't and don't want to live like this, because I feel like I'm not living. And it has not solved the problem....

I guess I'm saying I know the feeling of hopelessness, or just putting one foot in front of another, or lack of inspiration or whatever that may be afflicting your husband. In my case, depression has been a long term problem, and I am already on meds for it. Ironically, my cancer diagnosis was if anything a wake-up call, that energized me. For your H, constantly hearing that he's not ready for surgery yet may be draining. Maybe speaking to a therapist and possibly the right med would help him. Maybe a local support group. One of the virtues of online groups like this one or Colontown is that they are full of people who are defying the statistics, actively participating in becoming knowledgeable and fighting the disease, and yet open about their feelings. I actually suggest Colontown for that, because people use their real names and are a lot more open. At the same time, one cannot help but admit that his more negative/realistic view/mood is perfectly rational. It must be very tough for you. There is nothing you can do to inject him with a good dose of hope and cheeriness. Your support is so helpful, though, I know. Believe me.

Best to you.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda

User avatar
juliej
Posts: 3021
Joined: Thu Aug 05, 2010 12:59 pm

Re: The nagging feeling...

Postby juliej » Tue Mar 26, 2019 5:31 pm

Mohrfamily wrote:DH is no optimist. He's a fighter without a doubt but definitely a pessimist. If you have followed my other posts, Cleveland Clinic gave my husband 30 months give our take 1 week before Christmas 2018.

I am doing my best to be the supportive wife in this I don't need to remind him of what's at stake. I've tried all the positivity I can Its not "IS this my last summer?" Its more "I'm going to be here so what can we plan special in advance"

He still has that nagging pessimistic fear in the background. And because its still there he still has nightmares about it most recently this is his last summer. I've tried many times to explain we haven't had BAD news ::knock on wood:: every scan had come back with nothing new and shrinkage. But the constant "your not ready for surgery" "your car is tricky" just feeds that negative Nancy in him. I worry maybe he needs am anti depressant, but would he take it.

He says he's weaned himself off the prescriptions he's been given for nausea and the only one he takes regularly is the antibiotic for the vectibix rash. He did this to build his strength but also because he doesn't like taking anything.

What should I do, how can I help him live his best life in the now and focus on the good that's been driving us thus far.

I was given 18 months to live in 2010. When chemo started shrinking the tumors, I was excited. But then the docs started their refrain of "you will never be eligible for surgery." It was hard to hear. Depressing and anxiety-producing. I too started thinking about "my last summer" and other things. I'm not a pessimist by nature, but the continual negative news wore me down.

Going to MSK gave me my first glimpse of hope. I thought maybe, just maybe, it might work out. There were rough days there too, but I started feeling like I might see a few more summers.

Getting a Stage 4 cancer diagnosis knocks the wind out of you. It makes your life crumble in front of your eyes and it forces you to face the possibility of death before you're ready. My words cannot convey the weight of all of this. Sometimes there is simply no room for optimism.

There is also a kind of "defensive pessimism" that settles in. "Defensive pessimists" pre-process risk (For example, "What's the likelihood I'll even get a surgeon to operate on me?") so they are prepared for failure. It's kind of thinking the worse before it happens so you're not caught off guard. At some point you realize you're in a funk and you try to think of the best possible outcome instead. Oftentimes, though, the best possible outcome is far away and is not guaranteed. This reality is totally destabilizing.

Your DH is lucky to have you through these dark times. The hard part for you will be to remain detached from his negativity and not to take it personally. It's important to acknowledge his feelings as valid and acceptable, but also to point out that he is in fact making progress, just not as quickly as he wants.

Sometimes talking to someone else -- a friend, relative or someone completely outside your situation, like a counselor –- can help, if that's possible for either of you. And when he says something negative and you can't find the words (or you know that no words will cheer him up), a squeeze of the hand or a gentle hug can say a lot without you having to feel like you need to be the "positive Nancy" to his "negative Nancy." Touch is a powerful way to communicate and can show how much you care.

Watching comedy movies, as frivolous as it sounds, helped me too. Laughter is good medicine. My dad used to call me every few days and and ask, "How are things going down there in Iraq?" It always made me laugh because I did feel like I was fighting in a war. Just realizing I could laugh, even when things were so horrid, was a revelation.

Hope these comments help some. You're a caring, compassionate partner and it's obvious you care deeply about your DH. Taking care of him takes a lot out of you, so make sure you take care of yourself too, okay?

Hugs to you,
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 6/13/2019, CEA<1

User avatar
CRguy
Posts: 9958
Joined: Sun Feb 10, 2008 6:00 pm

Re: The nagging feeling...

Postby CRguy » Tue Mar 26, 2019 7:49 pm

Hey homies ...
y'all READ juliej

WORD !

CR
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Mohrfamily
Posts: 140
Joined: Tue May 22, 2018 4:04 pm

Re: The nagging feeling...

Postby Mohrfamily » Wed Mar 27, 2019 4:47 am

Thank you everyone you've all been uplifting and I truly appreciate it. Tonight as a treat to our 1st grader being good last week its family night at the bowling alley. DH expressed his excitement to bowl, mini golf, and eat pizza the kids get arcade tokens to!
DH dx officially stage IV with liver mets largest measuring 6x6.4 cm
Colonoscopy/endoscopy/port place 5/29
4cm long mass in splenic flexure
1st round FolFox 5/30
08/2018 new CT no new lesions, clear lungs, slight decrease in colon.
3/2019 PET scan shows greater than 6-7 liver mets largest measuring 3x3 cm. No growth nothing new.
4/3/19 consult radiologist for possible radiation treatment.


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