| | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Oh my dear Christine! I'm so sorry for the rough night you are having. I know you must miss the man your husband was before everything changed so drastically. It's such a rough road you are on. I wish I could be there with some hugs for you and a shoulder to cry on. I'm glad the day earlier on was good though, and that you got to do something for you to enjoy your day. I wish I had some practical ideas for you but I haven't been where you are. I wonder what the people in a care facility would do with a patient that refuses to cooperate - would they maybe duck tape the pads to the bed or chair? Or maybe get the "nurse from Hell" to come over and negotiate with him? I'm sure Matt is feeling really badly to be reacting this way and my heart goes out to both of you. I'm having one of my "can't sleep" nights so if you are still around and see this and want to "talk" just PM me, ok? I'll be around for a while.
Anne-Marie
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.)
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Daughters visited today, he was awake through the several hour visit. It was good for all. I had to work, but I am glad that they got the time together.
Matt doesn't know where we live anymore, he's confused as to why we are in this city. He seems to think we live in an apartment somewhere else.
The rattle from his lungs has been terrible for about a week now.
I fear the worst, pray for the best, and wish it was over.
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.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Christine:
My prayers are with you and Matt, and your family. Words cannot express the sadness I feel just reading your posts. Enjoy your time together.
Lovingly,
julieann
Julieann 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  | | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Christine,
glad the daughters had a good visit. Matt may living back in easier times since the here and now is so difficult to bear. Thoughts are with you both.
Maria
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.
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Today I am so grateful for my step daughter. She came while I worked and did ALL of my laundry. Took care of her Dad, sat with him almost all day, and we had a brainstorming session regarding his needs and additional care.
She sent me a text after she left stating that she imagined I felt quite alone in all of this, and she wanted to make sure I wasn't.
She's great. Just like her Daddy.
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.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Christine - Your step daughter sounds like an absolute angel here on earth! I am so happy that she was able to be with her Dad and spend precious moments with him, and to show you so beautifully that you really are not alone in this!! Sweet moments like the ones you had with your step-daughter are the ones that help to soften and get past the difficult ones. I'm so glad that you and Matt have such a special person in your lives.
Anne-Marie
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.)
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Hi Christine. I don't know how, but somehow I missed the post of your bad night. I'm so, so sorry for those rough times. I can't even imagine. What a blessing your stepdaughter is. YAY for her. It's refreshing to see a young woman step up!!
I don't understand the confusion if there was no mets to the brain? What is the doc saying about that?
Glad your terrible night was followed by some good days and company.
Praying for peace for you.
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | We haven't seen the doc, the hospice nurse is our "go between" and she is dismissive of it. Glad I read this post just now. She's on her way for today's visit. I will ask her for more info, because pain is managed, it's not the narcotics, nor the suspected brain issues... SO.. natural progression of the dying process?
I have read that confusion, etc. is common, but he still seems like he isn't that close to going...
It's frustrating and confusing, and gut wrenching... will update y'all this afternoon.
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.
| | | | | Joined: May 2010 Posts: 135 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2010 Posts: 135 | Christine you are in my thoughts. Ask the RN to run a serum ammonia level on Matt, that could be causing the confusion.
Bless you
D
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Today, added to his symptoms is PARANOIA. He still doesn't know where we are, even though he grew up in this house. He knows ME. knows I am his WIFE, but thinks I am hiding him, and am out to hurt him somehow.
The nurse added a liquid anti-anxiety med and told me when he becomes belligerent towards me to give him that every two hours.
No cures to anything will be sought but this company... as is the nature of hospice... just managing the symptoms by giving him sedatives.
(on a side note... while struggling to get the proper 0.25 ml dosage in the syringe, I dropped some on my hand, which I automatically LICKED off. OH NO!!! I am chill as a cucumber right now, folks, but lesson learned!!! WIPE IT OFF!)
He will no longer allow me to serve him anything unsealed or colored. Water only, as I am not to be trusted.
I am doing my best to laugh it off.
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.
| | |
| Forums23 Topics18,233 Posts197,097 Members13,278 | | Most Online1,788
Jan 23rd, 2025 | | |
|
