How to support my husband??

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Amy Mabe
Posts: 4
Joined: Wed Nov 07, 2018 12:25 pm

How to support my husband??

Postby Amy Mabe » Thu Nov 15, 2018 4:47 pm

Hello.

This is my first post here. I'll try to update my signature later with all the details, but to hit the high points- after 2 years ( :shock: ) of intermittent bloody stools, my 41 year old husband finally got a colonoscopy in September. They found a large polyp that was positive for adenocarcinoma. The CT scan did not show any metz with the exception of a question of a tiny, questionable spot in his lung. He's been a firefighter for 17 years and no one at the hospital or cancer center was very concerned about it. He had a colon resection 2 weeks ago and they found a spot where it has spread to his liver. The nodes were negative (0/10) although the surgeon said they didn't get as many as he would have liked for whatever reason. So T3 N0 M1, I think. We briefly met with the oncologist after the post-op appointment but have another appointment with him Tuesday after they present his case to the tumor board. Right now it looks like port placement and starting chemo (Folfox) the week after Thanksgiving.

My question is, how can I best support my husband? We are both healthcare providers and understand that the statistics aren't good. How do I make him believe that he is not the numbers? He gets so caught up in the statistics and percentages. We have 2 small children and he's terrified of dying and that they won't remember him. I'm sure this is all a part of coping and the grief cycle. But what did people do or say to best support you when you were first diagnosed?

Thank you in advance for your help.
~Amy

Utwo
Posts: 268
Joined: Mon May 23, 2016 10:14 am
Location: T.O.

Re: How to support my husband??

Postby Utwo » Thu Nov 15, 2018 10:15 pm

Amy Mabe wrote:We are both healthcare providers and understand that the statistics aren't good.
The opposite is true.
Chances of your husband for complete recovery are much better than 50%.

Amy Mabe wrote:How do I make him believe that he is not the numbers?
Do not be to pushy.
Do not "make your husband …".

Approach should be quite different. You can start at:
http://facingcancerwithgrace.com/circle-of-support/
Ring Theory

https://www.nytimes.com/2016/11/28/well/live/what-not-to-say-to-a-cancer-patient.html
What Not to Say to a Cancer Patient
Last edited by Utwo on Fri Nov 16, 2018 7:24 am, edited 1 time in total.
58 yo male at diagnosis: T1bN0M0, 0/15 nodes, low grade/moderately differentiated adenocarcinoma
03/2016 colonoscopy: 2 small polyps removed in left colon; CEA = 1.3
04/2016 colonoscopy: caecum sessile 3.5 cm polyp piecemeal removed with kind of clear margins
05/2016 "prophylactic" laparoscopic right hemicolectomy - bleeding, leak, infection
06/2017 CT scan, colonoscopy OK; CEA = 1.6
A lot of funny stuff discovered by CT scans in liver, kidney, lungs, arteries, gallbladder, lymph node, pancreas

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horizon
Posts: 1545
Joined: Tue Apr 12, 2011 10:10 pm

Re: How to support my husband??

Postby horizon » Fri Nov 16, 2018 12:05 am

I tried my best to avoid statistics but I'll never forget one day reading a magazine early in my journey and I happened to see a chart with the survival rates of stage 3 patients. I almost threw up it upset me so badly and it haunted me for days. You have to remember that most CC patient are MUCH older than he is. Tell him not to get caught up in numbers and focus on fighting this. You never know what the future has in store for you!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

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CRguy
Posts: 10229
Joined: Sun Feb 10, 2008 6:00 pm

Re: How to support my husband??

Postby CRguy » Fri Nov 16, 2018 12:35 am

Amy Mabe wrote:My question is, how can I best support my husband?
BE THERE for him and first seek to understand .... BEFORE you seek to be understood
How do I make him believe that he is not the numbers?
He is NOT the numbers BUTT ... nobody here, including you, can MAKE him understand that
until he can understand that himself
But what did people do or say to best support you when you were first diagnosed?
"What can I do to be there for you and support you ? "
" What do you need / need me to do ? "
" How can I help ? "
AND THEN ..... they listened to the answers from me
and did what I needed ... not what they wanted to do FOR me
AND I think the most important thing to remember .....
treat me like I am ME ... not just a disease
everything does NOT always need to be about cancer

WORD !

Sorry if this is too preachy,
JUST ME :shock:
BUTT ... BTDT close to 10,000 posts and >11 years as CRC survivor

SCREW the numbers :twisted:

to quote my signature
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !

Still here kickin' ass and takin' names

Please PM me anytime

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

kiwiinoz
Posts: 1151
Joined: Thu Jan 03, 2013 11:44 pm

Re: How to support my husband??

Postby kiwiinoz » Fri Nov 16, 2018 2:14 am

Something the Oncologist said to my wife and I, was something my wife took hold of and it became a mantra for her. I liked it as she pulled it out when I was feeling down on things a lot. Simply put, no matter what the statistics are, they are for you and your husband either 0% or 100%. I too love statistics and steps, and I'd read and get caught up in many details and she'd say let's live as if we were in the 100% and then deal with anything else that comes up at that time.

Another person on this board always said life your life like it was going to be a long one, as you never know, it may just. Basically face up to the fact that this is both of your lives and even if the statistics are not great this is the only life you have so you had better live it in a way you can both enjoy.

These are things my wife said to me and I appreciated them, as she came from a place of love and wanted to be happy with me. It sounds like you are coming from the same place.

Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 22 May 2019
Port Out 26 March 2015

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Amy Mabe
Posts: 4
Joined: Wed Nov 07, 2018 12:25 pm

Re: How to support my husband??

Postby Amy Mabe » Fri Nov 16, 2018 10:19 am

Maybe "make him believe" was a little strong. I've been with him long enough to know I can't make him do anything he doesn't want. :lol:
I just know when he starts reading and researching he gets down and depressed. I want to help him through that as much as possible without being insensitive to how he's feeling.
I've encouraged him to join this group where he can see other people who have survived and are doing well after treatment. But I don't think he's ready for that yet.
Thanks for all your suggestions.

Amy

mpbser
Posts: 953
Joined: Wed Apr 19, 2017 11:52 am

Re: How to support my husband??

Postby mpbser » Fri Nov 16, 2018 4:35 pm

very well said, kiwi.
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
low grade
1st primary T3 N2b M1a
Stage IVA
8/17 Sub-total colectomy
2nd primary 5.5 cm T1 N0
9 of 96 nodes
CEA: < 2.9
MSS
Lynch no; KRAS wild
Immunohistochemsistry Normal
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly bled to death
6-7 '19 5FU 4 cycles
NED

WarriorSpouse
Posts: 218
Joined: Tue Aug 16, 2016 9:02 pm

Re: How to support my husband??

Postby WarriorSpouse » Sat Nov 17, 2018 11:54 am

Amy,

Sorry to read what you guys are experiencing, but happy that you found this group of friends to talk with... There is much support here and we are happy to share our experiences with you to help get to you to the "new normal" of life. Anytime there is a change in one's heath, family situation, or something as significant as a spouse's diagnoses with cancer, there is an adjustment period to get to the "new normal" of life.

Surprisingly, you and your spouse will get there together and as the months of treatment turn into months of NED status, and your lives will begin to get back on track again. The initial shock of diagnosis and the new due diligence of treatment will begin to be part of your daily lives. The human mind and spirit adjust to such changes and there will be a point where each day is better spent living together and worrying less... This is what happened in my household.

Statistics that one may read are based on older treatment protocols and processes... Things have changed quickly in the CRC world in recent years, so this group of survivors are also beginning to live longer and have better outcomes than the generation before. There are lots of experiences here and much knowledge learned along the way. Use the search engine located under "Quick Links" to read about more specific experiences based on your husband's own diagnosis.

I always look at statistics in the following way... You are either going to win or lose, so regardless of other's outcomes, it is always a 50% / 50% game because cancer is unique to each patient. Some treatments will work for your husband and others may not... Go to what works and keep moving forward. Seek knowledge here, visit a major cancer center for a second opinion, and keep moving forward and purposeful in your actions. Waiting, hoping, and worrying can be more burdensome sometimes than living, planning and acting. Being proactive toward good health and mindset seems to help my wife. Only a suggestion from someone who has witnessed this process for the last 4 years with my wife. Living a purposeful life is good advice for everyone here... Keep moving forward with purpose:)

We are all here for you if questions or concerns need to be discussed. Good luck in all that you guys do going forward.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

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betsydoglover
Posts: 977
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: How to support my husband??

Postby betsydoglover » Sun Nov 18, 2018 7:56 pm

I am sorry for your situation - the early part of diagnosis is very difficult. Many have given good advice to you.

I know you want to support your husband and make things easier. But I think the best thing you can do is just be there - it is even more difficult to get your head around this diagnosis when you are the patient (i.e. survivor!). And, sometimes the shock is best supported by someone who is with you but not offering advice. (He'll get plenty of "advice" from other people)

Always remember that no matter how much you love him, it is his disease and he needs to process it in the way that works best for him. Much as you want to, you cannot do that for him. His way may actually include googling depressing stats and then coming to terms with them.

I found that once I started chemo, I was actually excited (I know this sounds weird) - finally I was doing something. Just knowing that made things easier and easier (even if the chemo got a bit harder). Scans are totally anxiety producing, but as you do more and more, the anxiety slows down a bit.

I wish you both the best.
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18


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