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#189791 - 06/03/15 04:49 PM Acceptance is elusive-denial/delusion ever present  
Joined: Jul 2014
Posts: 29
jklamert Offline
Contributing Member (25+ posts)
jklamert  Offline
Contributing Member (25+ posts)

Joined: Jul 2014
Posts: 29
So learning this cancer has metastisized to his lungs is still kinda new. Chemo started yesterday. We are ever reminded of his poor prognosis with all the red tape and paperwork the army requires. I am trying to wrap my brain around it. Truly I am. To hear and see in writing how advanced this is and that even with chemo his cancer is deemed terminal is so hard to grasp because he seems fine. He is even having issues accepting it because he feels fine. What can a person do to actually accept what is going on-a grim, grim outlook, when there are no signs at all? I don't want to skip around in denial to be broadsided later, but I just don't know how to do this. Does any of this make any sense at all? I just feel so blasted lost and confused. Thanks for listening!

Husband tongue cancer 7/01/14 (forward/right half of tongue)
43 years old at diagnosis
Partial glossectomy/node removal 7/31/14
PEG tube placed
2 mos high dose radiation
2 treatments cisplatin, 3rd was cxld due to hearing issues
cancer in both lungs, stage 4, 05/18/15
chemo port to be placed on 05/21/15
Full scan on 05/21/15
Chemo, 3-4 types (names etc coming soon) for 7 mos
4th type depends on clinical trial and if placebo or not
He is planning to defy all odds and kick this cancer!

#189793 - 06/03/15 05:13 PM Re: Acceptance is elusive-denial/delusion ever present [Re: jklamert]  
Joined: Jun 2007
Posts: 10,155
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,155
If you can find a good therapist at the treatment facility that would be ideal. Sounds to me like you both could benefit from some counseling. I dont know how I would deal with this kind of awful news either. A professional therapist should be able to help you learn how to accept your situation.

SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
#189804 - 06/04/15 03:17 AM Re: Acceptance is elusive-denial/delusion ever present [Re: jklamert]  
Joined: Nov 2009
Posts: 644
Alpaca Offline
"OCF Down Under, Kiwi"
Alpaca  Offline
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)

Joined: Nov 2009
Posts: 644
New Zealand
That is so hard. As Christine says a therapist/counsellor would be helpful to you both. I heard a talk by a health psychologist today and she sees head and neck cancer patients all the time, giving them all the support and understanding they need. She runs a course for survivors called Acceptance Commitment Therapy. While your husband has a grim prognosis, he feels well now so maybe this is a good time to come to terms with what's happening while maintaining hope that the chemos will keep the tumours from growing. There's always the hope that a clinical trial will show benefit. Wishing you well!!!!

1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
#189810 - 06/04/15 05:23 PM Re: Acceptance is elusive-denial/delusion ever present [Re: jklamert]  
Joined: Dec 2010
Posts: 5,260
Cheryld Offline
"OCF Canuck"
Cheryld  Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Toronto canada
hopefully a hug will help to...

so I am offering one to you...


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
#189875 - 06/09/15 11:40 PM Re: Acceptance is elusive-denial/delusion ever present [Re: jklamert]  
Joined: Mar 2014
Posts: 282
OzMojo Offline
"OCF Down Under"
OzMojo  Offline
"OCF Down Under"
Gold Member (200+ posts)

Joined: Mar 2014
Posts: 282
Brisbane, Australia
I was reminded today that people say stupid things to sick people. Its rarely intentional, but when its hard to find the words sometimes the wrong ones come out.

I hope you're getting all the support you need. I hope you are talking to the right people and they are saying the right things.

Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT All clear!
#189899 - 06/10/15 08:11 PM Re: Acceptance is elusive-denial/delusion ever present [Re: jklamert]  
Joined: Oct 2012
Posts: 1,012
gmcraft Offline
"OCF Canuck"
gmcraft  Offline
"OCF Canuck"
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,012
Toronto, Canada
When my husband's metastases were diagnosed, we were both shocked and there were a couple of weeks when I would just burst into tears. My husband, on his part, refused to learn about his prognosis and, to this day, he still does not know. Then, one day, as I was driving home, I was thinking that another day had passed and I would have one day less with him. But as soon as that thought occurred, another thought entered my mind, which was -- irrespective of the state of his health, we would always have one day less together. I think it is understanding this that has sustained me and helped me deal with his treatments and the side effects.

I hope that the chemo will help stabilize the lesions and that it will give you many more days to be together.

She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
#189923 - 06/13/15 11:19 AM Re: Acceptance is elusive-denial/delusion ever present [Re: jklamert]  
Joined: Sep 2013
Posts: 105
sophie theriault Offline
"OCF Canuck"
sophie theriault  Offline
"OCF Canuck"
Senior Member (100+ posts)

Joined: Sep 2013
Posts: 105
New Brunswick Canada
The day my husband was diagnosed with stage 4 cancer, I was heart broken. Then he had a life saving surgery and I felt as though I was given the world. When I realized that nothing was certain, I became overtaken with stress and worry for weeks.

After talking to my doctor and eventually a councillor and a phsycopogist I had a moment of realization. "All of it is out of my hands", and this lifted my burden of carrying his pain. Because I can't, all I can do is be a positive force, a hug, a smile, a silly joke, a sholder or as I have been so tired lately, I am more of a sleeping companion. My part in his life is to live, to share and to just be there. My latest passion is a rap song I wrote for my students. It is funny and makes him laugh.

I know that accepting that the person you love the most will die maybe sooner than later is different than living it. I would have a very hard time accepting that the biggest and most important part of my life would be gone. When that day comes and only when that day comes would I ever be able to deal and one day find acceptance. Life can be so very hard, but I am rich because I love through it all.


husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
#193629 - 12/24/16 03:48 AM Re: Acceptance is elusive-denial/delusion ever present [Re: sophie theriault]  
Joined: Nov 2016
Posts: 59
MrsW Offline
Supporting Member (50+ posts)
MrsW  Offline
Supporting Member (50+ posts)

Joined: Nov 2016
Posts: 59
what a heart rendering and deeply touching post....

Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
#195585 - 01/08/18 02:36 AM Re: Acceptance is elusive-denial/delusion ever present [Re: jklamert]  
Joined: Oct 2014
Posts: 4
lwilley Offline
lwilley  Offline

Joined: Oct 2014
Posts: 4
Northern Mi USA
My hubby cancer may have returned ,we will find out next week. He is a combat wounded veteran, with many health issues and PTSD. After 50 years of marriage, I have fine tuned some survival methods of my own. That said, they don't really work well for him. But, here's what I have done. I keep good records, I have a file for after he passes of paperwork to be done for vet benefits, necessary documents, banking and ins. Etc. All the stuff you will need to decide on later, decide now! With a backup plan. I also have a sewing, craft room set up, any hobby will work. I've always wanted to play piano, so bought one and am teaching myself. You need at least one good friend who will listen objectively, I went so far as to buy another puppy to keep my mind from wandering. Basically, I find out what will or may happen, decide how to handle it, and then put it out of mind until needed. I keep a few nicer outfits on hand for Dr visits, I find that being well groomed helps you look more intelligent, and you get better responses from others. Shouldn't matter, but most people only have a few minutes to judge how you will respond to all this medical technical jargon, it's best to get on their upside right off the bat. I know you must be scared, this is overwhelming at best, and you have so little time to prepare. Make yourself a notebook and write every thing, even thoughts down. Take time for yourself, sounds impossibly cliche, have a glass of wine, or a beer, whatever will relax you for a minute. And most importantly, pray for your husband , yourself and be thankful for each other.

The Warrior's Wife
#195588 - 01/09/18 01:23 AM Re: Acceptance is elusive-denial/delusion ever present [Re: jklamert]  
Joined: Jan 2018
Posts: 15
BryanB Offline
BryanB  Offline

Joined: Jan 2018
Posts: 15
Gun Barrel City TX
I noticed you said "Army" in your message. Thank you guys for your service to our country. I too am a vet and was diagnosed with my cancer in the Dallas VA. I had heard so many horror stories of the mental health department that I was actually scared to go, but when I finally did it was a life saver. It is so good for you and your husband to be able to talk to someone. Someone who understands and can actually help with ALL the questions that are going thru you mind. If I can encourage you to do anything it would be to reach out to a mental health professional.

With prayers,

15 year survivor of tonsil cancer. In 2002 I was diagnosed with Stage III squamous cell carcinoma. I had a left neck dissection, teeth removed, and 38 radiation treatments. In 2015 I received a feeding tube and in 2016 a trach, both due to radiation side effects. But I'm happy to say that life has been good to me!!

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