| | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | I wish there was something I could say that would just fix everything or just help a little. I'm sure the pain is affecting Matt's ability to be able to hang onto some measure of control when so much is out of his control and he can't help but lash out at someone he loves. I can see why he may not want to see the benefit that hospice could be since it might translate to him as giving up another measure of his control over his life. I have not been in your shoes, Christine - but my son and I did go thru a point where anytime I tried to touch or kiss him or hold him, it was too painful for him. Any sound, or light or movement hurt. And he would not eat. What helped us was when I took more of a "nurse from Hell" attitude to get him to eat. Right after yelling at him, I left so he would not see me crying uncontrollably all the way home. I sure hope someone else can weigh in on this because I would not want to suggest anything that could make things worse. I just wonder if Matt would take a suggestion of hospice help more easily from some other family member or friend - especially if it was mentioned as help for YOU?
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 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | We're pulling for you, Christine. I think that Anne-Marie's idea of having another family member bring up the hospice idea is worth a try.
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 | My wonderful stepdaughter sent me this verse via text this morning...
1 Corinthians 13:7-8
Love bears all things, believes all things, hopes all things, endures all things.
Love never ends. As for prophecies, they will pass away: as for tongues they will cease: as for knowledge, it will pass away
Regardless of the madness, sadness, and craziness that we endure, LOVE remains.
Happy Valentines to all of you.
Christine
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: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | I have an idea...why don't you call hospice but don't tell Matt it's hospice. Just tell him you need some help in caring for him. I've heard so many wonderful things about hospice care and I'm sure it will be a relief on you. It sounds like he's freaking out when he hears the word hospice, so why does he have to know?? Just a thought...
Hugs,
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | Yes it's to help you Christine, you can't do this all by yourself now, trying to work and take care of him, not easy. Tell him that, tell him YOU need the help to take care of him to make him comfortable and warm all the time. You will still be there of course but you will have a "helper" to assist you say if you gotta go potty or somethng they will keep an eye on him or when you need a shower you know. Tell him it's not just for him its for BOTH of you.
Good Luck Christine, try to hold them tears back if he gets pissy like that when you cry I'd try and be stone cold actually when telling him about getting help. Stay Strong honey!
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | it requires a doc referral, which he has to request, then it requires an intake interview at the hospice location... no way around him knowing.
I am having a better day today. I am trying to remind myself more often to live in the moment and just let the things that bother me roll away.
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: Feb 2005 Posts: 118 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2005 Posts: 118 Likes: 1 | Hospice has expertise in pain management. Perhaps Matt would be willing to speak with hospice about what they might be able to provide to him for pain control.
Be well. Zenda
12/04 SCC Tonsil, Stage IV T3N2BM0. Mod RND, resect right oropharynx, free-flap, resect right tongue base. Erbitux,Docetaxel,RT X 33. 6/08 Mets lung, hilar lymph node:Carboplatin, Docetaxel. 2010 2nd clinical trial:lung clear, node stable. ORN,trismus,dysphagia. 8-10/2012 cryoablation,brachytherapy,cyberknife to lymph node. 12/12 NED. 6/13 Mets RLL lung: 8/13 cyberknife. 11/13 NED.
| | | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2010 Posts: 531 | He has to request it? By any chance did you do a power of attorney thingy? I have the "power" for Ron and I'm not even married to him, you should be able to get that being his wife and all. See that's why I'm able to call docs and tell them stuff and let them know what Ron needs that he won't say anything about, and I am allowed to be told anything about him from nurses and docs. I had to sign alot of paperwork and I think Ron had to of course sign too. How would he be if you suggested this to him too? If I'm wording this wrong or calling what it is wrong feel free to correct me. But pretty sure it's POA. I don't know if cuz you are his wife that you need that though so...maybe you can ask doc for referral for hospice. You are legally I think cuz of marriage to be able to I think. Right?
CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
| | | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | | OP Gold Member (200+ posts)
Joined: Jul 2009 Posts: 280 | Suez, he's refused to sign a medical POA form. I got the documents about a year ago and brought them home, I guess he doesn't trust me? Typing that(saying it out loud) makes me really sad.
=(
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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | Christine you mention a step daughter. Would he consider giving power of attourney to her? Just a thought.
I have it for my parents as they do for me.
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
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