Helping husband through this difficult time

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wife2jeff
Posts: 63
Joined: Thu Sep 12, 2019 11:21 pm

Helping husband through this difficult time

Postby wife2jeff » Mon Sep 23, 2019 2:34 pm

I know everyone knows the toll the cancer diagnosis takes on everyone. This is still so strong for us. There are always so many emotions. My husband is having a very hard time with all of this, chemo, the bowel situation and he is feeling very defeated, he feels like nothing will ever be anything close to normal. He has a couple of medical issues which doesn't help so I feel so helpless a lot of the time. He always says he is tired of being here because of everything going on. Have others felt like that? I mean it's hard for me to hear that and I never know how to respond. I'd like to know how other spouses have done through this.

Claudine
Posts: 188
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Helping husband through this difficult time

Postby Claudine » Mon Sep 23, 2019 3:02 pm

I know how hard this can be, Wifetojeff! As spouses/close ones, we want to be supportive, be as uplifting as possible, yet we also want our partners to feel free to express what they truly feel. Cancer is a terrible diagnosis and it's absolutely understandable to be depressed... At times my husband would tell me, "I feel that I need to act happy and upbeat to support people around me because that's how they want me to be"...
I just try to just be there in the rough moments. A while back a friend posted this on FB (for a totally different, albeit also difficult, issue), I posted it on this forum, there it is again. I really liked it:

"I used to have the opinion that I was the master of my fate and the captain of my soul. However, I do not hold this opinion anymore. Shitty things happen. All the time. Every day. Empathy is the ability to go down into the darkness someone is experiencing and meet them there. Sometimes darkness is the place a person or a family needs to be. Empathy is not trying to bring someone out of the darkness and into the comfortable place you are at. That would be a failed attempt at trying to “fix” it. Sometimes the only fix is time. Sometimes there is no fix.
I know people mean well when they wish us good luck, or that they are thinking of us, or praying for us, or they’ll say it’s part of God’s plan, or God doesn’t put more on your plate than you can handle. I know now to avoid saying things like that when someone is truly in a dark place. They don’t help. Honestly, they cheapen the despairing feelings a person has and dismisses their vulnerability. I’d like to offer advice for people who are, like me, bad at empathizing with someone. I’ve learned to call a spade a spade. I’ve literally said this to a friend in darkness, “Fuck man, there is nothing I can say to take away your fear or pain or remove you from this darkness. Can I give you hug? I’m here.”"

There will be difficult times, then things will (hopefully) get more stable; it takes time to adjust to the different reality that cancer brings to your life. I have a friend who became paraplegic after a skiing accident. he was a very active person; suddenly his reality got changed so much. It took him a while to adjust, and now he's still really active, but differently. My husband used to be able to ride 100+ miles on his bike; he's slowly coming to terms with the fact that a 40 mile ride is still pretty damn good.
The other thing that helps is that a new routine will start; for example, in our case, 3-month chemo cycles followed by a scan. Now that our friends and relatives know that, they're not asking us all the time how things are going. My husband used to say, "I feel that cancer is 100% of my life now". At times, it still is - but slowly his life is growing back around it. There are still hard moments, but we manage to resume a pretty normal life in between those. I hope you and your husband can, too!
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 7.4
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

Claudine
Posts: 188
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Helping husband through this difficult time

Postby Claudine » Mon Sep 23, 2019 3:11 pm

I will also add - it's really, really important that YOU have support, too! friends, relatives, activities that take your mind away from all this. We need to be strong to be able to absorb the pain around us. At times, the best I can do to escape is by watching a silly TV show... Exercising is great too.
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 7.4
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

wife2jeff
Posts: 63
Joined: Thu Sep 12, 2019 11:21 pm

Re: Helping husband through this difficult time

Postby wife2jeff » Mon Sep 23, 2019 3:19 pm

Thank you for sharing Claudine I really appreciate hearing from spouses going through the same thing. It's so hard because I really think he will give up. I feel 80% that he will not want to complete his chemo. He is doing his second right now and he just got home with his pump he wears for 46 hours and he's already just feeling so sick. Last time it wasn't like this. I just don't ever know what to say, how to respond to things he says, so i just sit and hold his hand. On top of this he has been struggling with bowel issues since the surgery and that is causing it's own problems on top of the chemo.
Its nice to hear you're husband has a positive attitude and it making way with what his new normal is, that is so encouraging, right now it's hard to see him there but I pray every day for him. thank you

wife2jeff
Posts: 63
Joined: Thu Sep 12, 2019 11:21 pm

Re: Helping husband through this difficult time

Postby wife2jeff » Mon Sep 23, 2019 3:41 pm

I do try and get out with friends a little bit or go for walks, but I have to say I feel guilty when I do even though I know I shouldn't but I do. Thankfully my husband encourages me to unless he is feeling really sick he doesn't like to be left alone but it's still something I'm working on.

Claudine
Posts: 188
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Helping husband through this difficult time

Postby Claudine » Mon Sep 23, 2019 3:53 pm

I hear you! My husband and I have some common interests, but also different ones - I do a lot of rock climbing, for example, and he doesn't. Since his diagnosis, it's gotten really hard for me to go away for the day (and even more for a whole weekend) to climb, unless I know that he himself is doing something "fun" - even though he really pushes me to go. I even started road biking to be able to spend more time together (I'm finding that I'm enjoying it a lot!).
But of course, he seems to be doing better physically than yours, unless it's the 48 hours he wears his infusion pump. But it wasn't always like this, it took him quite some time to recover from his injured vertebrae. I really hope the treatment will be effective for your husband and he can get more of his life back XXXXX
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 7.4
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

Claudine
Posts: 188
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Helping husband through this difficult time

Postby Claudine » Mon Sep 23, 2019 4:14 pm

Another thought - most hospitals with cancer centers have support groups and support staff, not only for the cancer patients themselves but also for relatives, friends, etc. Maybe you could look into this?
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 7.4
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

wife2jeff
Posts: 63
Joined: Thu Sep 12, 2019 11:21 pm

Re: Helping husband through this difficult time

Postby wife2jeff » Mon Sep 23, 2019 4:38 pm

Thank you, I actually did ask the nurse about that today. I know that my husband isn't comfortable actually going to a support group he has expressed that he wished he had someone to talk to one on one that is going through the same thing. We do know someone who is however he hasn't reached out to him as of yet but his situation is quite worse than my husband. He has had some comfort in talking with a few friends who have gone through other cancers but obviously it's different.
Is your husband still doing chemo? My husband and I also have our own hobbies but we have a lot that we do together as well. Right now with everything between feeling sick and trying to figure out bowels he doesn't really like to venture far from home yet. He had a really good week last week and we had a lot of fun going out, shopping, visiting some friends it felt so good and some what "normal", something I haven't felt for awhile.

Claudine
Posts: 188
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Helping husband through this difficult time

Postby Claudine » Mon Sep 23, 2019 5:06 pm

He had a really good week last week and we had a lot of fun going out, shopping, visiting some friends it felt so good and some what "normal", something I haven't felt for awhile.


That's wonderful! I've definitely learned to live a lot more day-by-day and appreciate all the little things, and special moments spent together.
Yes, when we met with the oncologist last Wednesday he prescribed another 6 rounds of Folfiri + Avastin, since the adrenal gland met is still there and sloooowwwly shrinking, and since my husband does tolerate this regimen ok (although after 12 cycles it's beginning to be cumulative and worse than at the start). I just hope he can tolerate it longer... And that it keeps working.
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 7.4
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

wife2jeff
Posts: 63
Joined: Thu Sep 12, 2019 11:21 pm

Re: Helping husband through this difficult time

Postby wife2jeff » Mon Sep 23, 2019 7:24 pm

I hope he does well on it and it keeps working for him. He seems he has a positive attitude towards all of what he's going through. Thanks for the advise I appreciate it.

Lee
Posts: 5974
Joined: Sun Apr 16, 2006 4:09 pm

Re: Helping husband through this difficult time

Postby Lee » Mon Sep 23, 2019 7:49 pm

I am so sorry your husband is at difficult point. I have been off and on here these past few months. LOOONG story!!!! Anyway, could you fill in a signature line, stage, colon vs rectal, presurgery or after surgery, etc, any medical info that will help us to give you a better answer. I'm doing this blind.

When I was going through chemo, I would have a special day when I would do something I would enjoy. A day when I did not schedule dr appt, butt more important, a day I would not thing about cancer. A normal day for at least a few hours. A break from my cancer. Maybe plan something special after a few cycles, something to look forward too. Butt mostly a day NOT to think about cancer.

Hope this helps, make sure you take care of yourself. Many years ago, my mother was very sick in the hospital. I was trying to burn the candle at both ends. One of my doctor's saw this, pulled me aside and point blank said. If you don't take care of yourself now, you will not be much help to your mom much longer. It sunk in and I followed his advice.

Good luck to both of you,

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!

Gravelyguy
Posts: 263
Joined: Thu Jul 05, 2018 6:03 pm

Re: Helping husband through this difficult time

Postby Gravelyguy » Mon Sep 23, 2019 9:37 pm

This chemo business is tough stuff. I can remember being in the midst of it and thinking I would never feel good again.

I am a pretty upbeat person and used to making sure everyone around is ok so it was very tough not having the energy to help out when I felt like I should. The steroids really reek havoc on your emotional health too.

There can be a certain helplessness for everyone but maybe more so guys when you can’t be the rock that you want to be.

My advice would be to listen and also let him knoW from those of us that have been there, chemo doesn’t last forever and there will be a point when, believe it or not he will forget how awful the whole business was.

Hope this helps,

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

wife2jeff
Posts: 63
Joined: Thu Sep 12, 2019 11:21 pm

Re: Helping husband through this difficult time

Postby wife2jeff » Mon Sep 23, 2019 10:20 pm

Thank you, I will do a signature line here soon. I feel like right now between his bowel issues and the chemo it would be impossible to not think about cancer. Although we had a very good week last week and we actually got out and did stuff and it was fun and refreshing for both of us. I am so worried he will give up on this chemo, I don't know why but this time it has hit him hard not to mention this "tenesmus" has been very bad last night and all day today so he's been in pain all day.
He opted to not do the dexamethasone for nausea because he had to take that about 6 years ago after his brain surgery and it really messed him up, it made him very sick so he chose not to have it which I'm sure doesn't help much.
Thanks again for the tips, I do relay everything to him and I know it helps some.

Deb m
Posts: 521
Joined: Tue Jan 14, 2014 10:08 am

Re: Helping husband through this difficult time

Postby Deb m » Tue Sep 24, 2019 9:18 am

I remember my husband feeling the same way. He also became unemployed because of his cancer which made him feel even worse, like he couldn't even support his family anymore. It was a very difficult time for him and in turn me. We did get thru it, and you and your husband will too. I think all these feelings are completely normal. I do think it would help for him to talk to somebody, but if he's not ready for that, then I think you should go anyway. Hang in there.

Deb m

AmyG
Posts: 304
Joined: Tue Dec 25, 2018 8:08 pm

Re: Helping husband through this difficult time

Postby AmyG » Tue Sep 24, 2019 10:41 am

wife2jeff wrote:I know that my husband isn't comfortable actually going to a support group he has expressed that he wished he had someone to talk to one on one that is going through the same thing.


I'll be happy to talk to him, or listen!!
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3
CEA 5.8 idk wtf is up with that, but everything else is clear!


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