| Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jul 2009 Posts: 280 | Thank you Caco! I will check it out
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: Jul 2009 Posts: 280 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jul 2009 Posts: 280 | I had almost forgotten how difficult things can be. The mood swings are back in full force. I'm feeling like I cannot do anything right by him. I feel guilty for working, for walking with ease, for being "healthy"... We've been at odds more often than not today. He blames me, I blame him... I asked "maybe, just maybe, could we both be taking things wrongly?" He says "sorry i'm still alive"... just makes me wanna scream, and there was a time that i'd have done just that then had a good cry... Now, I know that it isn't anything I've done and there isn't anything I CAN do about it, so I just keep to myself in my office and wait it out.
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: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | wow sounds like me and Ron's living conditions, he stays downstairs and I stay upstairs, he eventually comes up to see me and talks a bit but goes back down. But he isn't mean to me and he isn't in the position Matt is in either. It's going to be hard, he's angry, angry at the world and you are in it and you are there so he lashes out at you. Don't take it seriously and you know what, go ahead and cry and go ahead and scream because you can and I know I would! I'd scream at him and I'd cry at him and I'd show I am also angry at what is happening to the man I married and love and there is nothing I can do in this world that can change what is happening. Only God can do that and you aren't God so don't beat yourself up. Pound your fists in the air and after you got it all out go and hold on to Matt and hug him with all your heart and cry on his shoulder and let him hold you and comfort you and if he resists hold onto him harder!
I think this is what I'd do.
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Awesome Caco... and Yes CM... it wouldn't hurt to try.... hopefully his pain management is sorted out soon. Prayers and hugs to you both.
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
| | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jul 2009 Posts: 280 | I almost wish we had two stories Suez, I'd be using it for sure! I'm not sleeping worth a damn anyway, and it sure doesn't help when he's having a bad night too... He just got home from radiation consult, the previous records didn't get to the new doc until this morning so she doesn't know yet what she can do, they just did CT scans and such to determine the area that needs the radiation. I am a bit concerned about this since he's already had two courses of radiation to the area, and they were reluctant to do the second. Not to mention he fell the other day! Just had the leg go out and spiraled to the floor. Ended up with abrasions on his forehead, elbows, and knees. I wish he'd just call for hospice and let them help get the pain under control. i think that he feels it's giving up to call them. i of course tried to assure him that it's not like that, and he could use them as little or as much as he needs... it's a jagged little pill to swallow i am sure. I do think he forgets sometimes that i grieve with him. He puts on a shell of anger or indifference and thinks i'm just waiting for him to die... as if i am not a part of this journey.
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: Dec 2010 Posts: 99 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Dec 2010 Posts: 99 | Hi Caroline I haven't been on this site recently and just caught up with your posts. I can feel your pain and am so sad for what you are going through. Emmett is doing okay but I keep waiting for the next shoe to drop and he too has good and bad days emotionally. What happened to the fantasy (at least mine) of a close and loving relationship as we ride off into the sunset? Hospise told me that they wish they would be called in earlier to help, that most clients wait until the last weeks to call for probably the reason you said, afraid it means your giving up. From past experience it was the best call I made, like a weight lifted off of my shoulders. I hope you can convince Matt to accept their help soon. Know you are in my thoughts and keep moving forward one day at a time knowing you are doing everything you can for Matt.
CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.
| | | | Joined: Jul 2009 Posts: 280 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jul 2009 Posts: 280 | Been a wacky week... I am really glad that I DONT accompany him to the radiation clinic right now. His daughter visited last night and he was telling her about the new doc. He called one of the front desk ladies a "twit" and the when the doc came in, she says "I don't know what that means, but don't say it to my staff again" I LOVE that his daughter said, "Dad, you can think that, but it's not right to say it to people". Glad I'm not the only one thinking that isn't acceptable, no matter how much your life sucks.... It's not their fault. He's usually on better behavior when I am with him because I will totally act like his Mom and call him out on it.
We've both been out of anti-depressant and anxiety meds for about a week now, and have been very quick to clash. Thankfully, we'll be able to fill the scripts today. Never underestimate the value of a good prescription!!!!!
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: Jul 2009 Posts: 280 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jul 2009 Posts: 280 | OMG, sleep is a beautiful thing! Feeling much better today, however, when Matt woke up, he could stand, but couldn't walk. I see bedside facilities in our near future. =(
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: Jul 2009 Posts: 280 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jul 2009 Posts: 280 | I have a question to all of you who read these...
Do they help?
It helps me to be able to unload things here that I cannot say at home, but the thought came to me this morning, how is another carer going to feel coming across the bad/ugly of it all. Some things on the forum scared the ^&** outta me when I first found it. Though now that I am facing similar things they bring me comfort. Perhaps I just answered my own question. I've been feeling insecure about venting, and my situation is only going to get worse. His memory and some motor functions are going. morphine? brain met? I don't know, and likely wont find out in this final inning.
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 | Short answer: YES! Please, Please feel free to vent any and all times that you feel the need - especially when you cannot share with those close to you at home. Chances are there is someone going thru the same pain and sadness and frustration that you are. Fortunately, for CG's and survivors, this forum is "a la carte" where you can choose those posts which will be most helpful or comforting. You can choose to hold off on those that may for a time, be too scary and painful to even consider. And we will all understand. When sadness is shared, it softens the pain, just as when happiness is shared, it increases the joy. I have not been where you are now, but when I first came here to OCF, there were two unforgettable women who have been where you are now: Cookey (Liz from UK) and JAM (Amy from Arkansas). If you look up their posts/blogs, you will see the honest, raw emotion in all its ranges, all mixed in with the love and compassion they had and how they found the strength to go from day to day and share what they had with the rest of us. Stay with us. It does help.
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.)
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