#52120 07-24-2007 07:21 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Ok....not sure where to start, what to say or what to do next. I am probably overeacting to some extent but upset and infuriated all the same. Yesterday I came home from the shore after taking my little girl and two of her friends with us. It was an enjoyable time, though, I was very preoccupied about what may have been happening at home. My older daughter stayed behind to take care of mom, if she needed her, and also to attend a family friends child's graduation party on Saturday night. From what I've heard from several people, mom was 'chain smoking'. I don't think she should be around smoke, let alone smoke or continue to do so. I was upset and disappointed but I wasn't there to babysit. When I got home yesterday, I was getting ready to have dinner out with Ed and the girls when my house phone rang. It was my mom, she sounded extremely upset and scared. She was calling from the ccc, she couldn't find my dad, who took her, and he had her phone, purse and pain meds. I called his cell phone over and over again, I callled her her's about the same number of times. I called the parking tower we always use, the officer there didn't see the car, mom said it was parked on street level. Mom called back and said she was going to walk around and look for him. I can't tell you how scared I was. I asked her to stay put but she said she was just going to look around and would call me back. I told her I would come down. I'm not sure if I am over the top with worries...but I drove down 95 like an idiot, calling their numbers the entire time. I finally got to the parking garage, drove down to the basement level and found mom's car--I was scared to look inside in case dad was in there and something had happened. He wasn't, so I parked my car and ran across to the hospital. I knew he wasn't in as a patient, because I had called on my way down, just in case. I was so scared and upset. I finally get to the front doors to walk in and I see my parents standing there looking at each other, kind of upset, but ok all the same. Suddenly, my dad looks out at me, he has the strangest expression on his face! My mom looks over and she looks blank. I go in and feel my fury brewing. You would have thought someone would have looked at their phone and decided to call me....but no. I think my mom forgot she callled me. My dad asked me, "What the hell are you doing here?" Not in a mean tone, more shock. At this point I look at my mom and she looks annoyed. She starts going off how she could find himn herself...this is after the phone calls where she is hysterical. I knew if I opened my mouth I would have had verbal diarrhea everywhere. I just said I was glad he was ok, I had to leave. They both asked me why, I just said because I was supposed to be out to dinner with the kids because it was my girls b-day. I turned and walked away. I could see their reflection in the glass, I could see they were agitated, and I didn't care then about their feelings. My father the entire time was sitting in the seats by the nurses station, only patients on the beds ever really sit there. I don't know how they missed one another. I got in the car, flew back home, stopped for ice cream cake and when I pulled in my dad said something to the extent that I didn't get anywhere fast. I wanted to throw the ice cream cake at him. My mom suddenly starts in on me. Apparently I have been taking over on everything. She doesn't want help from me. She wished she didn't have to look at me. That was last night, I don't think she recalled any of this today. When she woke up this morning, I walked into her room and asked her if there was anythign special she wanted to wear. She said she wanted to die. I dont' know what came over me but I said if you contiue smoking them, meaning her cigarette that was in her mouth, you'll get your wish. I've talked to her again and again about smoking. Aside from how bad it is for her, I have bad asthma and it is really bothering me to breathe around it. I also told her that I imagine that the doctors may tell her to stop treatment because it could be considered a waste of time. I have read about all the danger she is inflicting on herself. She is so angry with me. The cherry topper today was she couldn't find her 'brick or stones'....I asked, didn't want to, but did anyway....what are you talking about? She said she was carrying either a piece of brick in her pocket or stones so they don't know how much weight she has lost. I said that was the most assinine comment I could imagine hearing. I am beside myself. I went to the pharmacy to pick up her thrush medicine and broke down to the pharmacist. Sh said I should ask my doc for an increase in my effexor, and xanax. She said I am not alone, but I certainly feel like I am. Most of all, I am upset for my behavior and for my mom's comments about carrying stones, bricks....I am still waiting to laugh about yesterday and for the comments today....just don'tthink I ever will. Is it normal to be this angry? I can't tell you how upset I am. As usual, thanks for letting me vent.
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#52121 07-24-2007 07:30 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | also.... when she has the brachetherapy, don't they automatically give her a feeding tube?
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#52122 07-24-2007 08:27 AM | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | Hi, Donna,
Sometimes it may seem as if loved ones care more about the treatment than the one who is going through it. My sister-in-law was diagnosed with lung cancer when she was 42 and died about two years later. She had been a heavy smoker for years and as it turns out- smoked throughout her entire treatment including after she appeared to go into remission. My brother has never smoked and he tried for years to get her to stop but gave up long before she was diagnosed with cancer. Her three children tried to get her to stop (pre-cancer) and were devastated when they "caught" her smoking during treatment. She smoked the last weeks of her life as well. I have thought about this so many times- how hurt and angry her family was because they felt that she valued/enjoyed smoking and her right to smoke over their concerns for her and her caring for them. She and I talked once about her smoking right after she was diagnosed and she said she expected cigarettes would likely shorten her life (e.g., heart attack but not cancer) but was thinking more in terms of dying at 80 instead of 85 (NEVER expected such dire consequences in her early 40's). Of course I sort of "get" all of the psychological and physical things that go with smoking - the routine, doing something one wants to do whether others agree or not, the soothing aspects it takes on which certainly all come out during times of stress and fear. But I have to say I often wondered why she continued to smoke once diagnosed and especially when she appeared to be in remission. I don't know the answer but I've gone back and forth between her never really believing that she was going to make it anyway and her believing that because she was so young and looked healthy she would beat the cancer regardless of whether she continued to smoke.
I think that whether it's about smoking or something else, the individual with the cancer needs to care about and believe in their treatment at least as much or more than their loved ones. There is only so much we can do as caregivers if we are trying to promote something that the patient doesn't want or doesn't think he or she can do. I don't mean on occasion that we don't push things but in an overall sense.
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+ induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
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#52123 07-24-2007 08:34 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Donna,
WOW, I wish I could spend a few hours with you talking about this, because it sounds like you need that more than anything.
I can see this situation from both sides, since your mom is my mothers age AND I was a mother while going through the same treatments.
From a daughters perspective: I would feel just like you do right now, which is angry as hell. How can you NOT feel that way? But just know that the love you feel for her will overpower the anger eventually and your feelings will settle around. It may not be a bad idea for you to look into making your medication stronger. I can't even imagine that your mother is still smoking? I would think it would HURT her mouth? It probably will eventually so maybe that will make her stop. You should matter of fact tell her that the treatments are pretty much a waste of time if she keeps smoking, so why bother?
From a mothers perspective: I know how scared your mother is right now, I've been there. And I was there when I was 20 years younger than she is and still had a 9,11 and 12 year old at home. Don't feel that your mother doesn't love you or appreciate you, she does Donna. She's not herself right now. Although I wouldn't have reacted the way she is (in fact, I didn't react as she is) we all behave differently when put in this type of horrific situation. Are her pain meds altering her state at all?
I wish you well with this Donna. I remember one time when I had like a kind of "breakdown" and my then 21 year old walked around and around the block with me at 3am.............I was mean, nasty and hateful acting and the girl just kept walking with me,not saying a word. She kept squeezing my shoulder and telling me to "let it all out". Boy did I! Your moms behavior is going to yo-yo alot right now so be prepared.
The smoking though, that has to stop although I don't know how you can go about achieving that. Have you told her doctors? Also, TELL her radiation department what she is doing with the rocks and stones. I can't believe she doesn't have a PEG in already. I would try to get her one now.
Take care, Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#52124 07-24-2007 10:55 AM | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Donna - I wish I could be there with you, too! You had every right to be angry and to react as you did. I agree with Minnie in that you should tell her radiation department about the smoking and the rocks and stones. I'm sure they will consider all their efforts a waste of time if she continues to smoke. They could be spending their time on someone who really wants to be treated. My mother smoked and drank all her life. When I was 20, I couldn't take the smoke and the constant headaches it was giving me so I left home. My mother died of emphesema. I'll bet that if you mention the smoking and the rocks to the doctors, they may have some suggestions. Maybe a nicotine patch or even a fake one? You also need to think about your own health, too. Being around smoke is certainly not good especially for someone with asthma. Sometimes the caregiver needs to think about the caregiver or their caregiving will suffer. So, Donna - do something nice for yourself, right now.
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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#52125 07-24-2007 02:11 PM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | I've been having a day of it all-that's for sure! Thanks for responding, different, or even same perspectives help a lot. To answer a few of your questions... yes, her meds have changed her personality. I can usually pull her around and out of a mood but as of late, she is becoming more and more stressed. I find it difficult to be a whipping post, but I seem to set myself up for it....and it seems to get her to let it out and then she sleeps-and cries. Lately when she wakes up she has no idea where she is. It's upsetting to her and unsettling to me. Sophie, I had an aunt, who was only five yrs older than me who died from lung and brain cancer. She smoked winstons or marlboros and pot everyday. for years! I remember thinking to myself, I am watching a beautiful woman turn into someone she said looked like tales from the crypt, and I recall thinking, wow, this is horrible, this will stop my family from smoking. It didn't. Everyone says it's an addiction. I don't know if mom doesn't beleive that she won't make it through all of this. I guess I should ask her. Maybe that would help. Tonight my dad went up to try to get her to eat something and she started reaching for her cigs instead, he yelled at her, and she blew up. I went up a short time later and saw tobacco all over her light bedspread. I was going to change it, she told me to leave it. Minnie and Anne-Marie-I wish you guys could be here too. I feel like I know both of you and quite honestly, don't know what I would have done without your friendships. Today I didn't really do anything. It's been a hairy day for me. Did I tell you that my cousin was killed on Saturday on a motorcycle accident? I called my uncle in GA and spoke with him for a while...felt good to be able to help someone and share love with them in a time like that. I wish I could be there for the services but it isn't possible. I sent a huge spray of bright yellow flowers....seemed fitting. My Uncle reminds me so much of my dad, they are two years apart but could have been twins. I wonder if my dad's parents realize what a wonderful job they did raising such loving children. I with these relatives lived closer. I have tow uncles who are local, mom's brothers, one is older and has been through hell with prostate cancer. He doesn't call, doesn't want to disturb mom. >>>honestly, don't know if I but inot that. My other uncle is only 7yrs older than me and he hasn't spoke with anyone since Lauren died almost 7 yrs ago. I've treid calling to tell him about my mom but no one ever answers. I tried calling my doctors office today, no one answered-very strange. Will call again tmorrow. Thanks for always being here. Have a nice night.
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#52126 07-24-2007 02:24 PM | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | Donna,
What a tremendous amount of stress you are under, it seems more than one can shoulder alone.
I don't get the smoking thing, doesn't that hurt her mouth? How frustrating for you to witness that when you are trying so hard to get her better.
And, how incredibly sad that your cousin died over the weekend from the accident.
I'm so sorry things are difficult for you right now. Will send many prayers your way for you and your family! Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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#52127 07-24-2007 02:26 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Dear Donna, It goes without saying that your Mom is angry, hurting and lashing out. That's the way it is with this cancer and the pain,fear and frustration the patient endures. I would softly suggest to you that you admit to hitting a low point as a caregiver right now! Look in the mirror and say," O.K.,this is the hardest thing I have ever done and I don't know how I'm gonna get through it". Then think - really take some time to think and seperate - what you can and can't do for the duration of her treatment. There are many things going on here that are NOT in your control. That is a very hard thing to deal with. And your Mom is dealing in her own way [whether you approve or not] But you have a family of your own and yourself to look after. It sounds like your Mom is in a self-distructive mode, but you do not need to go that route with her. Wishing you well, Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#52128 07-25-2007 03:34 AM | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2007 Posts: 794 | Good Morning Margaret and Amy, Today is better...well, for me anyway. I crashed yesterday, I was wondering when that was going to happen. I do feel better now-though, I can't really say why. I think I came to the point that I can't control everything. Although I think I know what is best, I can't make others do anything about it. Mom hasn't had a cigarette since yesterday afternoon when my dad went up and yelled at her. He said that it was hurting all of us watching her kill herself. She 'spazzed out' (as my kids say) but she didn't light up. I have decided that today while she is in treatment that I am going to try and find her rad-onc and speak with him for a few minutes. I really want her on an anti-depressant, she needs it. She doesn't want it, I think she's too far into it to think clearly. Amy-I did exactly what you said about making decisions about what I can and can't do. I wish I could say my family were more reliable, but honestly, they are not. I have to run and gas up her car. I'll let you friends know how I make out today....thanks for being here for me. Donna
Donna CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
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#52129 07-25-2007 03:46 AM | 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 totally agree with what Amy says and such good advice for any sitution we find ourselves in! Just being able to realize what we can or cannot do or control, and acting on the things we CAN do helps us feel more in control and could lessen the stress. We can only change ourselves but sometimes in doing that, others are influenced positively. There are so many ups and downs in this cancer roller-coaster. I do hope things start going better for you very soon.
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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