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#170207 08-31-2013 01:05 PM
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I have been trying so hard to keep a good, positive attitude and to cover up my fears and worry over Linda that I seem to have become a Man of Steel in others' eyes. So far from the truth. We brought Linda home from the hospital yesterday and I'm not at all sure we should have. She has chemo on tues and I'm not at all sure that in her present state they'll do it. I fear she may not get well enough to handle chemo at all and I'm very afraid that she is not going to make it. Maybe I shouldn't have said that but I feel I can open up here with what I don't want to say even to my family, let alone on Facebook. Michael totally freaks out over every change in her state of health and doesn't bother to hide it. He's done a tremendous job of keeping his Mom on schedule for her meds, keeping track of her temp and o2 saturation and changing her ostomy bag, but he complains constantely about how little sleep he gets, how stressed he is, how hard he works at these things, all in the presence of Linda, and he brow beats her when she can't remember if she took her pain med or any time she is a little unco-operative, laying on the stress levels for Linda and me both. I've talked to him about his attitude and how he makes everything all about him but that led to a shouting match and I felt very guilty that Linda could here it all. Later he said that when he's talking that way to his Mom that he's aware of it and wishes he didn't sound like that, but just this morning he had a total fit because her bag came off and he had to0 change it. I tell him to go get some sleep and I'll do it but he won't and so he browbeats and bitches away the whole time. I can not do the job as welol as he can but I can do it and I would rather do it myself, however imperfectly, than to have to listen to him. He thinks I'm being really nonchalant about all of this and gets pissed off if I try to inject a little humor now and then, like I'm just not taking it seriously, "Man of Steel". I just don't want Linda to know how afraid I am. PC is acting up, I'll continue later.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
Deejer47 #170212 08-31-2013 01:34 PM
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So, I know that I'm not talking about oral cancer here and I have gone to an ovarian cancer forum but it takes a while to be comfortable enough with strangers to really talk about things. I feel at home here with all my OCF family who know that I'm not really given to whining (I hope). I really don't know what to do about Michael. As I said, he does a wonderful job on the physical side of things but he is really driving both his Mom and me into a state of stress that is not at all good for anyone. Often he goes off on a rant and gets her all upset and then says he feels better letting that out. Well, fine, he feels better but everyone else has had that much more stress added. I keep it all inside so not to upset Linda and it's tearing me up. Maybe somewhere between how Michael is handling this and how I am there may be the right way, if there even is such a thing. Any way, that's enough of my rant. Love you all.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
Deejer47 #170213 08-31-2013 01:46 PM
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Posts: 262
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Oh David <<<HUGS>>> -- I am so glad you brought this here. The tension must make everything so much harder. Michael sounds angry at his Mom for being sick and needing his help.

I would consider scheduling shifts for caring for Linda so that Michael is "off duty" and you are on duty at designated times. Maybe your insurance would cover visits from a home health nurse -- a nurse might come in and see ways to make life easier, medication logs, etc. I wish I lived nearby and could try to ease the load for you all in some way.

But mostly just want to say, you are right to insist that everyone be compassionate to each other through this difficult time.


53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
Deejer47 #170224 08-31-2013 04:27 PM
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Posts: 49
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David, "rant" away.
Sometimes we need a "safe" spot to land, in order to move forward and figure things out.
Praying that this will get resolved for you and Linda.
Barbara (caregiver of Richard)


65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
Deejer47 #170228 08-31-2013 05:27 PM
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Hi David,
I know a little of what Michael is going through because I get frustrated with my Mom sometimes. Luckily, maybe it's my age, I am able to step back and catch my breath before I really hurt her feelings. I think we do it out of fear more than anything. It sounds like you need to have a counselor involved. Do you go to church or have a church family that could intervene a little bit? What about other friends or family members? I can't imagine how awful this all makes Linda feel and as her hubby you need to just step in and put your foot down. She needs you to be her voice if at all possible. Not that you probably don't already know this, but maybe you feel you shouldn't because he is just trying to help. But that kind of help is doing more harm. Like you said, doing something slightly off is better than belittling Linda.
I'm so glad you know we are here for you. I love that we can vent to each other.
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
Deejer47 #170235 08-31-2013 07:13 PM
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Administrator, Director of Patient Support Services
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David, Im so sorry to hear your struggles are continuing! I know you have your hands full with Linda.

Your son is having a hard time too. Poor kid watched you go thru your OC battle and then his mother ongoing medical issues. I cant imagine how difficult this is for him to be forced to face the mortality of you both. He probably wouldnt want to talk with a therapist but it would be a good idea.

Wishing you and Linda the very best with all you are facing. Hopefully Michael will begin to calm down as he comes to terms with everything.


Christine
SCC 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 smile
Deejer47 #170241 08-31-2013 11:14 PM
Joined: Jan 2013
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Try calling these folks. Maybe they can connect you to a group local to Chico. Finding a local support group may really help to go and learn coping skills that eases the situation all around.

Cancer Support Community San Francisco Bay Area
3276 McNutt Avenue
Walnut Creek, CA 94597
United States
925-933-0107
www.cancersupport.net


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Deejer47 #170247 09-01-2013 09:42 AM
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There is a local ostomy support group which meets next sunday Linda and I plan to attend, hopefully Michael will go with us as the main focus right now is with the ostomy and how to deal with it. The local ACS has already offered help with problems associated with the cancer and has given us some help with buying groceries in the form of gift cards to Safeway market. We'll find out through them about support groups and also look to the group suggested by Don. This amount of stress is terribly unhealthy for us all and needs to be brought under control and we can't seem to do that ourselves as every attempt to address it turns into a shouting match.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
Deejer47 #170265 09-01-2013 01:11 PM
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Posts: 875
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Hi David:
I have been keeping up with you on Facebook, and here when you post, and so sorry to hear what you are experiencing. I don't know the age of Michael, but for some reason younger people cannot take the stress that us older folks have learned to accept. I'm sure that inside Michael regrets the way he acts/talks, but that's no comfort to you or Linda. You're right that she doesn't need to hear or see his actions, but if he lives with you, that will be hard to control unless you maybe just take him aside and read him the riot act about how he behaves and you want him to STOP - period. You have always seemed like such a soft spoken caring person, I'm sure you have let him get away with things he shouldn't, just in hopes that he will change. Try to convince him that he is hurting his Mom more than he is helping. Ask him why he wants to hurt her? Tell him that is not acceptable and he needs to change or leave. Maybe that will scare him into "thinking" before he acts or speaks. This is just my 2-cents worth, but thought I'd let you know what I think. I have been praying for you and Linda and always look forward to some good news. If things go on like they seem to be now, you'll end up sick yourself with worry. I feel sorry for Michael, but he does need to stop.
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 smile
Deejer47 #170280 09-01-2013 04:18 PM
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Posts: 2,671
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Oh David - I'm so glad you did come here. It really helps just to know there are others who really do care and can feel what you are going through. You and Linda and Michael have all had a pretty rough time of it. And when someone you care about is hurting, especially a child - it's really hard to take a firm stand and set some rules. You've had some good suggestions. Mamacita's idea of a home health nurse might just be the thing that could make a difference. Sometimes someone outside of family, who can see things objectively can offer suggestions to Michael without having him feel like it's his Dad or Mom telling him what to do. It's good that you and Linda plan to go to the support group and hopefully Michael will too. You have always been such a great caregiver but you need care, too - so that you can keep going and surviving and helping Linda to survive as well. I hope things improve and can get a little easier for all of 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.)



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