Hi all,
My daughter is 4 wks post tx radiation & has fallen into a deep hole. She's lost more weight (under 100 lbs, can't get her to pump more calories thru the PEG tube, & is severely depressed because she still has so much throat pain & can't eat. After reading a lot of posts over these last 3 months I'm aware that depression is pretty normal. The MO and DO both told her yesterday that she needs to get out & be around people & not 'stay in her jammies all day & keep falling in bed', which is exactly what she's doing. She gets up in the am & takes her boys to school, comes back & goes back to bed until time for them to come back home in the afternoon. I called one of her good friends today & asked if she'd give Teri a call & try to get her out (I told her not to tell Teri I'd called her). However, obviously Teri figured out I'd prompted the call & let me have it. She accused me of overstepping my boundry & disrespecting her by making the call! I tried to explain that I was just trying to help her because I love her but she told me again I'd overstepped my bounds & that she's not a child. This is really hard because she is a single mom & I've been the 100% caregiver since diagnosis back in Sept. I've been to every dr appt, radiation appt, hydration appt, made all the med runs, etc etc etc. I know this is really tough on her & it's always very easy to lash out at mom & I can handle that part. However, I know this depression is real & now that she's so upset with me & refuses to see any of her friends, I don't know where to go. She's absolutely refusing any help. Any suggestions?
Bonnie
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CG 41-yo daughter, stg 3 SCC lateral tongue, partial glossectomy, mod neck dissection, 1 pos node, IMRT x 30 complete 12/22

The depression part is really difficult, both for the patient and the caregiver. Sometimes the best thing you can do as the caregiver is just let the person talk - about how their feeling both physically and emotionally, indicate that you hear what they are saying, but since you are NOT the patient can

Good advice Barbara,
Bonnie it is so difficult being a caretaker. There are some people thet you can't drag to get professional help. What they are feeling is real and having a death sentence hanging over you is not easy to overcome............. (It is now when the caretaker usually gives their pep talk and says honey the Dr. said there are a lot of people who are surviving and doing very well with this disease.) The problem is one is mourning and one is trying top move forward. Suggest to her to post her feelings and what sucks about having this disease. I tried this and before long I realized why I was so lonely and depressed. There is a lot of feelings to sort thru and getting them out will speed up the Healing process.
If that doesn't work put sugar on her pasta and tell her that you thought it would help sweeten her up. Cancer can be a battle in more ways than one.

Bonnie - You might bring all of this up the next time your daughter goes to her doctor. I had the same problem with my husband and finally when we went to the doctor she pushed the right button and he broke down in front of her. She explained that it had nothing to do with him as a man it was what they have done to him with the chemicals, treatment, etc. He wasn't eating and this was 8 wks post treatment. Since going on anti-depressants, he is eating and he is back to his old self. As you can see from the posts here, almost everyone has been down this road. Please see that she gets some help. Take care and God Bless you all.
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Caregiver-husband. Stage IV SCC-left tonsil-3 lymph nodes - IMRT X35 - Cisplatin/Tarceva X35- 8/06-Neck dissection 11/06 - 14 lymph nodes.

Bonnie - It is very difficult being a caretaker with a grown child especially if she is not taking in enough nourishment to give her enough energy to do more than just the very basic things. My son (single father) has been taking meds for depression for about two years, (Welbutrin and Zoloft) and I was really worried, right after treatment ended (12/19). He had stopped his weekly counseling sessions with two different therapists and it was only after I tried several different approaches that he decided to go back to the therapy i.e.

Bonnie, the 1st month after my Treatment was the toughest for me and the toughest on my wife. I was depressed and there was no more active treatments to go to, I would sleep during the day and pace the floor at night. I called it stuck in a dark room and developing negatives. Anyways my chief conselor/mentor is my oldest brother, a man I've come to admire for his faith and strenght of conviction. With his guidance and some long hours talking/reading with the lord and the help of folks like Mark/David/Amy/Carol etc... from this board I was able to let some light in the room. Keeping active and getting exercise helps to. Even if it's just a little walk.

Now I'm not saying this will work for your daughter, I'm just letting you know that this is normal. On days back then and even sometimes now my wife has kicked my butt to go do something. And although I may be mean and snappy at her at the time, I love her more for doing it. I hope this made sense to you. Keep on trying to help her get out of the house and reconnect with life. One day she will say OK. And if all that fails...she's a woman suggest a shopping trip. :p

Bonnie,

Try to get her to visit this site. If she will just begin to read what others have posted I believe she will begin to see that her feelings are perfectly normal. I did not find this site until 2 weeks after my Tx had ended but believe me I found immediate mental comfort just knowing that what I was experiencing was normal. People are different and how we deal with adversity is not uniform. Perhaps she just needs the comfort of being "around" others she can relate to. This is the soft love approach.

If that doesn't work, then drag her butt to a professional and lock the door. This is the tough love approach.

Hi Bonnie,

I did the same as your daughter. I did not get dressed unless I was going to the Dr. I would get up in the morning for about an hour or two. Then back to bed. I was just tired and could not do anything more than that. I could barley think. As time went on I would stay up or out of bed longer and longer. My body just needed time.

I found this web site when I was about 4 months out of treatment. Like David said it really helps to know others are feeling the same as you. It helped me a lot! and still does. People here have so much to offer each other.

Hope things will start to improve for your daughter. Then you will see, she is OK and know she is starting to heal. Maybe just give her a hug and then ask what you can do for her to help. This way you will not over step any boundaries. I know it is hard on MOMs.

Take care,
Diane

Hi Bonnie, All you need to do is read these posts and it proves one point "We are all a work in progress" Depression does not just go away it is a constant part of all of our lives. I think people like Tim will fare better because he is willing to admit he is depressed. Everyone of us share each others joy and triumphs and everyone of us also shares each others pain. Your daughter is in that dark room Tim refers to but she will eventually work her way out. In the meantime as hard as it is seeing a child go thru this keep up your support and your love and your message will get thru.
In all of our thoughts and prayers,
Mark

Hi Bonnie, just wanted to share that after John was finished with surgery [a big one] and radiation, all he wanted was to be left alone to sleep and try to regain a "sense of the world". After a couple of weeks, I labeled it "depression". I was wrong! He was just trying to combat the real pain he was in and get through each day. AS caregivers, we see much of what our loved ones are dealing with - but we do not feel the pain. Teri is not very far out of tx. yet. The fact that she makes the effort to get the kids to school and be up when they get home is great! If she is anything like John, she doesn't want to have to deal with anyone else in the interim- She just wants to rest. For now, I think your best help is to see that the pantry and freezer are stocked, run any errands and keep the household chores done. Don't make her feel inadequate! She has a long way to go to regain her physical and emotional strenght. This advice is coming from the "nurse from Hell" as John fondly[I think] calls me. Amy

Bonnie - I agree with Amy - it is great progress for Teri to be able to take her boys to school and pick them up! My son was barely able to take his daughter to school a couple of times a week and then he would come home and sleep until it was time to go pick her up. We are so anxious to see hopeful signs and they seem so slow in coming. I was struck by Teri's description of the pain in one of your posts. She had used the exact words my son had a few days before and it made me see how real it was. Doing household chores, laundry, prescription runs, etc. has helped me to focus on something other than how my son is doing. Bonnie, if we lived closer I would be suggesting a "mother's day out" for us. You've been doing so much for her and it's obvious how much you love her but maybe you need a break yourself - maybe a bubble bath, chocolate, a good book, sudoku puzzles or just doing something special for YOU!

Thanks all for the posts. I've printed all of them & given to Teri. Her comment was "Wow, I didn't know this was so "normal"!" She appreciative of all your comments & advise.
And to add to the problem, it's finally dawned on me that I'M depressed. I just can't get the tears to stop flowing! I'm calling the Cancer Center tomorrow to get an appointment with a counselor for ME. Hopefully Teri will follow suit shortly.
Bonnie
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CG 41-yo daughter, stg 3 SCC lateral tongue, partial glossectomy, mod neck dissection, 1 pos node, IMRT x 30 complete 12/22

Well, good for you, Bonnie! I'm so glad you are doing something for YOU! Tears are OK, you know - they can be very cleansing. And it's OK to feel some compassion for yourself. You and Teri have been going thru a rough time but things will get better. Keep us updated. I'll be thinking of you both and sending positive thoughts and prayers your way.

Way to go, Bonnie!! Getting that appointment may turn out to be the best thing you have done for yourself in a long time. Amy

Bonnie take me with you!!!!
Keep us informed how YOUR doing.
Always, Mark D.

Bonnie,

Your daughter and I are roughly the same age. I was 40 when I had my first of 2 surgeries followed by unexpected radiation treatment. I was 180 pounds going into it and was 135 pounds 4 weeks after radiation. It will get better. It was just to painful to eat and I had no desire to do so.

I am now (2 years later) a "Too Fat" 185 pounds and actually miss the days I could wear the jeans I had in High School. :-)

The pain will subside and things will get better.

I would offer this advise as well:

I did not want my wife to consider herself a "Fulltime Care Giver". I would not use that term around your daughter. It would have absolutely infuriated me. I know that you mean well and take this as advice from someone that's been through something similar. Your daughter had cancer surgery not brain surgery. She needs to get back to her own routine and doesn't need you making decisions for her. She needs to be in charge of her condition and situation. You are there to help and not to take over. She needs to feel empowered to deal with the things that she normally dealt with before. Let (or require) her to make the same decisions without interference or even suggestions from you. You'd both be better served if instead of making decisions for her, you force her to do it.

I don't mean to sound brutal. I know from experience that it's easy to feel helpless and have the "Why me" attitude. I know this because it was me not long ago. It took a friend of mine that I hadn't seen in years to tell me I was a "Whiny quitter". He went on to tell my wife that she was feeding my "poor me" attitude and to stop being my maid and start being my wife. I was furious, but he was right and that made me get off my tail and start living again.

I'm not trying to be negative. I know that you have nothing but the best intentions.

God Bless,
Rob Trainor

Hi All,

I am new to the list but feel I have something to add as a Survivor.

I read in a book about cancer during my treatment in 2002/2003 that hit home and can sum up this situation. As cancer patients, there is an enormous amount of treatment information to digest in a short amount of time. We have to rely on our doctors and nurses so much to tell us the next step. Even if it is come in tomorrow for X appointment. The treatment wears the patient down so baddly that this becomes the security blanket. When that treatment is over, especially with radiation, there are no more doctors or nurses to tell us what to do any more.

The book went on to say that each person reacts differently post treatment obviously because the treatments affect each patient differently.

Caregivers can not fill the role the doctors and nurse fulfilled during treatment. However, it does not mean a caregiver should give up.

What worked for me was talking to other people through my ENT as a sort of therapy.

Hope this helps shed some light on what a survior goes through post treatment.

Jim

You bring up a good point, Jim - when my son's Tx ended, I felt I had lost my "security blanket' and I was only the CG - the routine we had settled into was suddenly gone and we both were having to face a new "uncharted territory". So we both had losses to overcome and decisions to make which can be scary and leave us wondering "what now?" I like what Rob said about how important it is for the survivor to feel empowered and in charge of the situation. It really helps to know or feel that no matter what the situation is, that there is always something we can do about it. And Bonnie - let us know how YOU are doing!

Since I don't know where the "OCF- Getting through It Together" book is [stage wise] right now, I don't know if this is possible, but the inclusion of the above posts would be very beneficial to caregivers [as well as patients] They express different points of view, different appraoches to dealing with this and are good food for thought. From caregiver Amy

A FRIENDLY exchange between my wife the exellent Caregiver and me the ideal Patient.
Caregiver--- You keep this shit up I'm going to poison your drink.
Patient---You keep your shit up I'm going to drink it.

Mark - I love your "friendly exchange". I just copied it and sent it to my son, also the ideal patient! Not long ago, when I dared to insert 1/4 cup of 100% Whey Protein ($18 for 1.1 lbs!) in his nutritious, hi-calorie milkshake, he acted like I was trying to poison him. Today, I made some very tasty nutritious (Whey) popsicles which I am going to try out on my grandchildren.

Good morning all, I can't begin to express my sincere gratitude for all of your wonderful & insightful posts. I've copied many of them & sent them to Teri (in particular Rob's post about her getting her life back!) FYI, I have an appt with a cancer therapist for myself today - I'll let you know how it goes. Teri & I have been treading lightly with each other these last few days but at least we're communicating. She's apologized several times for being so difficult & said that she realizes that she now needs to "take more responsibility for this illness". It's a step in the right direction. Thank you all so much - I feel like each one of you is a friend!!!
PS: Mark, I've printed your friendly exchange & taped it to MY computer screen!
Bonnie
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CG 41-yo daughter, stg 3 SCC lateral tongue, partial glossectomy, mod rad neck dissection, 1 pos node, IMRT x 30 completed 12/22

Bonnie,
Tell your daughter Terri that being a single parent today is by far the most difficult job in the world, add cancer diagnosis to that and most of us wouldn't want to get out of bed either. I have a feeling you are both going to come out of this great. It is a long process and you are taking the necessary steps. Please keep us posted.
Always,
Mark D.

As best as I can recall (I keep blanking on some of this) for a few months post-radiation, I would get up out of bed, get dressed and fed, then go lay down on the couch, getting up only when necessary, until it was time to get undressed and get into bed. And I was already on anti-depressants.

I can't imagine having had to interrupt that routine to run a delivery service for schoolkids, so she's doing better than I likely would have done.

Time and healing from the radiation devastation will take care of this naturally.

Dear Mark D. I'm on your wife's side "Then nurse from Hell"

Well I

Bonnie,

Going through a cancer battle can be a test of the wills, as you have certainly found out. As I look back on my experience, I think it was probably a good thing that virtually all of my family (other than my husband) was geographically far enough away not to be a part of the day-to-day ordeal.

It sounds as though your husband was prepared to make some sacrifices as long as the actual treatment was going on, but thought that things could revert to "normal" after it was over, kind of like flipping a switch. (I'm just guessing here, but he may have also assumed that at that point you'd be able to give him more attention again.) However, as you know, recovery from radiation can take months -- in many cases, one month of recovery for each week of treatment. If your husband wasn't aware of this before, he may have had an unrealistic set of expectations.

If Teri is now at the point where she realizes she has to be less dependent and take responsibility for her recovery, it's probably time for her to start to do or say some things that help to show that she's truly grateful for what he did for her these past few months. It sounds like this is a wound that may take awhile to heal, and she may have to be the one to take the first steps toward making it happen.

Cathy

Sounds like your husband mistakenly assumed that the end of radiation was the end of suffering!

Wrong!!!!!

The end of radiation isn't even the end of the internal baking that is still going on -- Have him read the directions on a microwaveable meal, the part where it says to let the food stand for X minutes after the magnetron has turned off -- The stuf is still cooking, and so is your daughter for up to the next six weeks!!

Then the healing starts and it goes slowly with no apparent progress even week-to-week -- I am personally a full year out now, and people are still telling me I'm looking "much better lately".

Do the Mule Trick and tell him to reset his Expectations Timetable to reflect reality (The Mule Trick is where you whack him in the head with a 2x4 to get his attention )

Altho I know it is totally inappropriate and not at all what Bonnie needs to hear, I am reduced to falling out of my chair laughing at Pete's post.

Bonnie, you are in a really tough spot. It sounds like your hubby is saying "O.K. thats over" while you and Teri know that this will never be "over". It may take a visit by your hubby to your therapist to enlighten him on the long term emotional effects of a life threatening disease. [hope you can get him to go] If you and your husband have a good communication base, this is not a marriage crisis. It is an issue that you haven't had to deal with before and now you do. You both need to find the common ground. [easier said than done sometimes Amy in the Ozarks

Thank you guy! It's just a really rough time right now. As you said, Teri & I know this is a LONG term process, but my husband is a "fix it" type person & I think he's frustrated because he can't. Yes, I've got him to agree to go to my next therapy appt with me & hopefully we can get some clarity. And if it doesnt' help I'll definitely try Pete's mule trick!! In the meantime I took Teri to the med onc today & she's going to start swallow therapy (has a barium swallow eval next week). So we start a whole new chapter.
Thank you again my friends, I don't know what I'd do without you!

Here's to you Bonnie! You are truly a caregiver. And Hooray for your husband for going with you to the next session. That says ALOT about his character and his committment to you and Teri. Amy in the Ozarks

Hurray for you, Bonnie! I'm so happy for the progress you all are making! Just seeing how well you are doing as well as all the helpful posts, has really helped my son and me in his recovery progress. I'm definitely going to remember Pete's mule trick, too!