| Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Sal, congrats to you both on finishing the treatments! The next 2 or 3 weeks will still be difficult. Then your husband will slowly begin to feel more human. Sorry to hear he is being so miserable to you. Im sure it hurts your feelings so much after caring for him for weeks. Its not right. I can understand how horrible your husband feels and its pretty easy to be snappy when at the end of tx. Hang in there it will get better in a couple weeks. ChristineSCC 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 | | | | Joined: Sep 2011 Posts: 19 Member | Member Joined: Sep 2011 Posts: 19 |
CG to husband Rob - Stage IVA Squamous cancer of the left tonsil - T2Na- 8 weeks radiation, 3 weeks Chemo. Smoker, drinker, HPV & Epstein Barre
| | | | Joined: Sep 2011 Posts: 19 Member | Member Joined: Sep 2011 Posts: 19 | Hi Christine,
Yeah it does hurt my feelings, I may be tough on the outside but inside I am not. I can almost understand the anger, it's like the anger you feel when someone you love dies..I just stay out of the way and hope the feeling of cringing when he is in the same room goes away soon.
CG to husband Rob - Stage IVA Squamous cancer of the left tonsil - T2Na- 8 weeks radiation, 3 weeks Chemo. Smoker, drinker, HPV & Epstein Barre
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Sallie - Do try to hang in there a little longer. Having just finished treatments is a big change, and any life change brings a lot of stress in itself, even if it is a good change like not having to make the daily trips any more. It takes time to make the transition between a former routine to a new one. Also the 2 or 3 weeks at the end of Tx are the worst for most and that is a big adjustment for both of you. Sometimes certain medications can cause changes in mood or behavior so this could be something to ask the doctor about (check the prescription bottle label). Remember - it Does get better!
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Sallie,
I remember the days of being pumped full of meds, tired beyond belief, suffering from horrible side effects from the drugs and treatment, depressed and frustrated. I would remember sitting there and hearing the aweful things that would come out of my mouth and was horrified as I couldn't believe I was even saying them. Some of the worst things I said I don't even remember, Aly shared them with me in the times I was lucid. I would cry and tell her I was sorry and that it wasn't me...and it really wasn't.
It mortifies me now to see what she went through because of me and I show her how grateful I am for her strength now and appreciate her everyday. She's the strongest person I've ever met and I'm in awe of her.
It's so very hard to be a caregiver to those you love and are close to. It's hard to seperate the person going through treatment and recovery and the person you love and in my humble opinion they are not the same person. I always felt I was trapped inside a monster, almost imprisoned.
Hang in there sweet Sallie, have faith and hold onto hope my dear. Keep your chin up and vent here as much as possible. We do have an island paradise on these forums where many go and imagine themselves drinking, dancing and dipping their toes in the water (green fields and lilacs thread). Drop in, have a drink, you deserve it and getaway for a bit.
One of my favorite songs is by the Zac Brown Band called Toes, the chorus is amazing. "I got my toes in the water, ass in the sand, not a care in the world a cold beer in my hand life is good today...life is good today." Dip your toes girl.
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Sep 2011 Posts: 19 Member | Member Joined: Sep 2011 Posts: 19 | Thank you Eric..your words are most comforting..especially right now. The anger that he has is just beginning to rise to the surface..he tells me "I am moody and don't want anyone around.." and he has suggested that I go and spend the day some place else because he wants time to himself..so I will do that, hopefully he will remember that I too have suffered.
Yes it is difficult to be a caregiver to someone you love, very difficult, especially without saying anything. I am going to check out the island paradise ~ most definitely need one right now : )
CG to husband Rob - Stage IVA Squamous cancer of the left tonsil - T2Na- 8 weeks radiation, 3 weeks Chemo. Smoker, drinker, HPV & Epstein Barre
| | | | Joined: Nov 2010 Posts: 167 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Nov 2010 Posts: 167 | I can relate to your husbands' desire to be alone. There were times that I wanted to be alone too just because it was too much work to try to be nice when I felt like I was about to crack into a hundred pieces.
Take the time today to do something that you'll enjoy! Enjoy the sunshine and the smell of the air - do something just for you! He's just trying to put himself back together right now and there are parts of recovery when he needs some time alone. It doesn't mean he doesn't love and appreciate you!
Take good care,
Jennifer (39) 02/10 SCCa Tongue & Base, HPV- 03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out Back at work and feeling good 03/24/11! 12/20/11 - 9 month f/u PET/CT - all clear!
| | | | Joined: Aug 2010 Posts: 157 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2010 Posts: 157 | Eric is amazing...I was a complete monster as well and am suprised Korinne is still here with me as well. Why do we say that stuff? Who cares, just know like Eric said, it sure as hell aint the real one you love, just the drugs and side effects talking. Guess what, we gotta do it again and now everyone is prepared to tame that monster. Now if I can just find that dang vaporizer!
SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | J still has serious anger issues about his situation. Everything following the 1st biopsy was unnecessary. He seems to be coming to terms with it slowly. He's still having Erbitux rashes which tend to keep it fresh in his mind. It's a different anger than when he was first diagnosed. But, he still needs lots of time by himself. On weekends, he sometimes leaves mid-morning and doesn't come home until late in the evenings. After work sometimes, he doesn't come home until after midnight. He likes to go to the beach, go for a drive, etc. He just wants to be by himself. He started collecting sea glass. Anyone expecting to find sea glass on any beach in Ventura County will be greatly disappointed. It is all in glass containers in our house. I think he felt cheated at first or that maybe he had squandered time. Now, he's just angry that he went through so much unnecessary pain, removal of healthy teeth, an incredible amount of stress, and the enduring Erbitux reaction for no purpose. He's not the same person he used to be a year ago. J's situation is unusual. Regardless, going through oral cancer diagnosis, treatment and recovery is a life changing experience. There are mental and emotional adjustments that go along with the temporary and permanent physical changes. It's a process. But, at some point, a decision has to be made to either rise above it and move forward or remain mired in self-pity and anger.
Last edited by Sandy177; 10-01-2011 08:12 PM.
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.
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | Oh Sal, he sounds sooo much like Ron. Check out my postings fo what I went thru! He was sooo damn mean and things he said to me were hateful BUT I am sorry I didn't keep my mouth shut after awhile AND I took away the pain meds that caused his mean demeaner. Oxycotin. NO MORE! He was so mad at me. They gave him this crap in Pain Management! How stupid, he don't need that he does just fine with his Vicodin. Just cuz he took it more times a day than he would the time release Oxy...No Way no more! Now he's doing really good, he does tend to stay by himself a bit vegging with the TV with his programs. But he is very nice to me now. So yes it has to be meds. It will pass. I've cried many times in the shower...but I wouldn't let him see me cry, I did once and he made fun of me in one of his anger moments. I said NO MORE! Either I didn't say anything to him and ignored him OR I spouted mean stuff right back at him! Now he is a happy man once again!
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
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