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#146326 - 02/23/12 03:18 PM like sands from the hourglass...
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Sometimes it feels like I am stuck in a really bad episode of a soap opera.

Mentally, there are times that I don't think Matt knows where or when he is. He will do completely random acts and if I try to figure out what he is doing he gets quite upset.

He isn't eating again too. I told him he'd feel better if he would, when he tells me he feels yucky.

Then he says, if I eat or if I don't I die anyway, what's it matter.

CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.

#146328 - 02/23/12 04:05 PM Re: like sands from the hourglass... [Re: CMMoore]
Pandora99 Offline
"OCF Canuck"
Patient Advocate (1000+ posts)

Registered: 09/14/06
Posts: 1328
Loc: Winnipeg, Manitoba Canada
How sad Christine. It sounds like Matt's condition is deteriorating quite a bit now. I don't have any experience in dealing with this stage of the disease, but wanted to tell you that you remain in my thoughts and prayers.

Donna,61,SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV.New primary R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 11 yrs from 1st dx, 7 yrs since 2nd dx. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL!

#146333 - 02/23/12 05:18 PM Re: like sands from the hourglass... [Re: Pandora99]
julieann Offline
"Above & Beyond" Member (500+ posts)

Registered: 06/24/09
Posts: 875
Loc: Alabama
So sorry to hear this Christine. If it's any consolation, you have friends who are thinking of you and sending prayers your way.
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile

#146335 - 02/23/12 06:23 PM Re: like sands from the hourglass... [Re: julieann]
wallyswife Offline
Senior Member (100+ posts)

Registered: 10/09/07
Posts: 104
Loc: London, Ont.
Thinking of you Christine as you struggle through this most difficult of times in the cancer journey. I am sure Matt is indeed confused and hallucinating at times but gets angry when you can't understand what he is up to because it is so real to him in his mind. I went through this with my husband in his last weeks and days. All you can do is gently dispel the errors in his thinking and redirect if necessary. I can remember my husband when his hallucinations started, asking me if something was real or in his mind. Eventually his periods of lucidity decreased, thankfully he was easily redirected. If Matt should become aggressive in his thinking and behavior sedation would need to be considered. I hope you are getting some support now from Hospice, Don't hesitate to call them for help anytime you need it and also friends and relatives that may be able to give you a break. This a tough road you are travelling and you need all the help you can get. May you find the strength and courage to face each day.
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.

#146337 - 02/23/12 07:07 PM Re: like sands from the hourglass... [Re: wallyswife]
Anne-Marie Offline
Patient Advocate (old timer, 2000 posts)

Registered: 11/03/06
Posts: 2671
Loc: TN
Calling on friends or relatives is a really good idea. I remember when a friend of mine was caring for her Mother-in-law who had lung cancer - I went over once or twice just to sit with her MIL so that she and her husband could go out for an hour or so to take care of errands or just for a change of scenery. It does help. Sometimes people don't think to offer to come to stay with the patient, but if they ask what they can do to help, you could mention it or even if they don't ask, you could mention it anyway. It's a very loving, but tough and demanding job you are doing and you do need a break to take care of yourself, too.
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)

#146345 - 02/24/12 12:12 AM Re: like sands from the hourglass... [Re: Anne-Marie]
Gabe Offline
"OCF Down Under"
Patient Advocate (1000+ posts)

Registered: 08/02/07
Posts: 1301
Loc: Sydney NSW Australia
Originally Posted By: CMMoore
His daughter that lives a few hours away has said she will be making trips to see him every other week, and his local daughter is still visiting frequently. I LOVE having some local support and they usually back me up when it's needed.

I went back to a previous post remembering Matt's daughters are close by. Correct me if I am wrong but I seem to remember you moved to the area to be closer to his family?
Considering what you have written and Matt's state at the moment are you able to have them there more often for his sake as well as you your own...just a thought confused
Wishing you all the best with your struggles and sending you a big {{{hug}}}
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

#146349 - 02/24/12 02:52 AM Re: like sands from the hourglass... [Re: Gabe]
Gerri Offline
Supporting Member (50+ posts)

Registered: 08/03/10
Posts: 75
Loc: Nebraska, USA
Christine, I know how hard this is and no words make it easier. If you can, try to let the bad moods and anger slide off and make the most of every minute. The progression really changed Jim too. I had to keep reminding myself in those moments that it wasn't him treating me that way it's the disease....much easier said than done, I know, but I sure wish I could have a do-over on some of my reactions. Thinking about you!
CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11

#146361 - 02/24/12 02:13 PM Re: like sands from the hourglass... [Re: Gerri]
CMMoore Offline
Gold Member (200+ posts)

Registered: 07/01/09
Posts: 280
Loc: MO, USA
Thanks for the words of wisdom ladies.

Gabe - Yes, I dropped everything to move closer to his children through this. The daughter closest to us usually stops in once a week, but has been busy this week. Both of his daughters are expected this weekend. I may use the chance to get out for a day.

The hospice nurses said that it's likely just the narcotics at this point causing the confusion. He didn't admit to any hallucinations, but I suspect there may have been a few along the way.

CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.

#146383 - 02/25/12 05:30 AM Re: like sands from the hourglass... [Re: CMMoore]
Sandy177 Offline
"Above & Beyond" Member (500+ posts)

Registered: 01/17/11
Posts: 571
Loc: California
The thing about the hallucinations is that they are totally convinced that what they are seeing, remembering, experiencing, thinking, etc. is absolutely correct. J's dad called one day and asked how J's business trip to the moon went. He asked a lot of detailed questions about it. Mets and Meds. J just went along with what he was saying and answered the questions to the best of his ability...having never actually gone on a business trip to the moon.

It's kind of funny to think about it now. Back then, it was really sad.
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.

#146388 - 02/25/12 03:40 PM Re: like sands from the hourglass... [Re: Sandy177]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 945
Loc: Ohio
Hello, Christine
I hope that the daughters are there to visit and that you have some time to yourself. Maybe the confusion will lessen on its own or they can change the medications a bit. Prayers for peace and strength to you from Ohio.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.

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