Hi. I need some help please. I know this is going to be long and I apologize in advance, but I need some real-life input, as opposed to Dr and Nurse Practioner input.

My mom finished treatments four weeks ago today. She lives at my house so that she could be close to the hospital for treatments. (My husband is a saint.) I don't even know where to start. She does not want to get out of bed, makes no effort to do anything to get herself better, will not speak (she has a trache, but also has a speaking valve that she could use if she wanted to), does not want to see anyone other than me and my sister, who helps care for her every other week, does not read, only goes for one tiny walk outside a day (and that is with a HUGE fight), and just flat out refuses to do anything to make herself get any better. She has a peg tube and will not do her own feedings and waits for one of us to get up in the middle of the night if she is coughing and needs meds or just needs to sit up in bed. If she vomits, which still happens occassionally, mostly from mucous, she just waits for me and hands me the pail full of mucous.

I realize it will take awhile for her to get back to herself, but she has become, and helped herself become, so weak that she can barely walk a few steps. The plan was to have her go back and live in her own house on October 1. My sister has been using FMLA leave and my job has been more supportive and flexible than I ever would have imagined, always with the thought that about 6 weeks after treatment she would be back at home. At this rate I honestly believe that if I took a year off of work or even quit she would be in the same state a year from now. She just makes no effort. The current plan is to get a live in nurse for her to have at her house starting mid October after her scans. She does not like the idea, but I think it will be the only way for her to get better.

Is this type of behavior and lack of caring on her part normal? She does not even wipe up her own mucous. She is on Zoloft as well as anxiety meds (along with the rest of the normal arsenal of meds). Any thoughts on what I should do? Is this normal?

I really appreciate any and all help anyone can provide. Am I being unrealistic that she should make an effort at this point - 4 weeks out?

Thank you, thank you, thank you. I don't know what I would do without all of the knowledge on these boards.

Amy

Amy, I can tell you that four weeks out I was feeling pretty miserable physically, and probably even worse mentally because at that point I had been feelings really miserable for so long (a couple of months) that it seemed like it would never get better. I think saying that your mother "would be in the same state a year from now" shows a pretty strong lack of understanding in terms of just how bad this treatment can make you feel and how long after it's over you feel bad. Radiation is the gift that keeps on giving and it is only around now that she should start to notice any improvements--many people get *worse* for several weks after radiation is over--and the improvements that do start to happen will probably be very gradual.

On top of that, the ant-anxiety meds and the zoloft, while they may be keeping her from serious depression or panic, could also be making her kind of indifferent to things she might normally care about.

I agree with you in pushing the "tiny walk outside" every day, and in pushing for her to feed herself and learn how to do her own meds, but please try to lower your expectations about how she should be feeling right now. And try to put yourself in her shoes--you are frustrated with how long it is taking her to show any improvement but you aren't the one in pain,vomiting phlegm and comptely fatigued by the radiation--just think how frustrating it must be for HER that it takes so long to feel better.

Nelie

Nelie,
Thanks, and I honestly do realize (to the best of my ability) how awful she must be feeling. If you only knew her before she got ill... She was like Wonder Woman. I am not frustrated - I am concerned, as is everyone who sees her, including her nurse practitioners and doctors. That is why I was looking for some "real life experience" here. I would do anything to help my mom feel better and help her get better. But, given that I do not know anyone who has gone through this before, it is hard for me to know what is normal. I read this site and there is so much discussion of people pushing themselves to go back to work just weeks after their treatment, or at least looking forward to trying new things, and my concern was more that she lacks and and all of that motivation. I realize it will take time, I just want to make sure we are on the right track. Based on your experience it sounds like we are.

Thanks again,
Amy

Hi Amy,

My dad went through a lot, surgery, heart attack, radiation...he too was superman prior to the cancer. He drove himself to every radiation treatment, forced himself to eat and drink, and just last week he got on his riding mower and cut the grass. His radiation treatments ended just two weeks ago.

I, like you, would be very concerned if this super human did a 180 after treatment. Sometimes medications need to be adjusted and can even have the opposite effect on people that they are supposed to. I would talk to your mother's doctors and let them know your concerns.

Everyone responds differently to treatment. This may just be more difficult for your mom to bounce back from than others, and still some people may experience worse symptoms than your mother.

Hang in there and consult with her doctors. They are the ones that can really let you know if what she is experiencing is normal.

Joy

Hi Amy,
I would ask the doctor about her zoloft. I have heard of a lot of people having issues with that med, I guess they could be referred to as adverse reactions. I know when my aunt was dealing with her lung cancer she was on that and she sat like a zombie until we had her med switched.
I hope your mom has a better day today. My mom who finished about the same time is up and down emotionally. She opted to not go on an antidepressant, she hated the idea of any more drugs in her system. She cries throughout the day....sometimes she looks at my kids and smiles and cries, the pets, the neighborhood kids...it's all so very emotional. Being her primary caregiver I can appreciate your concerns, this emotional rollercoaster is tough to watch. I don't know if you saw the quote somewhere here on the forum, I think it was from Petey-miss him sooo much!-- "Cancer depression is like driving a car on empty, you wonder when it's gonna conk out."
Hope today is a better day.
Donna

Hi Amy,

Not sure of your mother's age or her possible other problems, but sounds like she is being a big baby. She has to want to get better. I suggest you tell her that you or your sister can no longer look after her and she must go to a long term care facility. I know the guilt will a problem, but she needs to understand she has to put forth some effort.

Tough love is hard but works.

Steve

Gee, I have to STRONGLY disagree with Steve and do agree wholeheartedly with Nelie. My 62 yr.old husband, who never slept more than 7 hrs in his life and loved working hard everyday, was knocked flat on his butt by 30 radiation txs. It took him over 8 weeks to feel like getting up and doing anything.[and he hated every minute of feeling that way- he kept a journal and every day for weeks there was an entry that read "I didn't make it up atoday, but tomorrow, I will get up and accomplish something"] He was not on Zoloff or any other mood altering drug during this time. Several things could be going on with your Mom. #1. Just the effects of the treatment are enough to have worn her out physically and emotionally, #2. The Zoloff and other meds might well be contributing to her lack of motivation, #3. The psychological effects of having to deal with this cancer may be more than she can handle. This is not like recovering from a tonsillectomy! I am sure this has added much stress to your household, perhaps youall need to re-evaluate how much care you can realistically provide and go from there. But., please don't lose patience with her at this point in her recovery efforts. Amy in the Ozarks

Amy's right, most of us were train wrecks at 4 weeks, physically, spiritually and emotionally.
Don't be too hard on Steve though - most of us don't want to remember the worst days of our lives.

The general rule is one month of recovery for each week of treatment.

I fully agree with Amy. I think there is no place for "tough love"...after all, it's not like she is misbehaving.
Gary, thanks for the reminder of one month of recovery for each week of treatment. Would you happen to know how to assess that for brachetherapy? I think my mom is going to get 4+ wks of radiation in 3.5 days.
Amy B--
you are doing a wonderful job, no matter how you may not think so at times. Being in a reverse position, caring for mother when you are the child, is hard. It's confusing at times-how much can we push? how do we define the lines for what is acceptable? My mom is my best friend too. Seeing her broken, well, it hurts. I think we both need to focus on the person we really know them to be. Somewhere deep inside this person we are currently looking at is our mothers. Believe in her, even when she can't. I think that helps my mom most.

Amy B,

I don't think anyone wants to feel as lousy or dependent as your mom does right now. I was surprised that things got so much worse for my husband post-treatment...even though I had been forewarned. I do remember the day when he felt he turned a corner and then things slowly started to improve.

Prior to turning the corner, I could not get him to go outside...even to walk to the end of the driveway. So, good for your mom that she is taking a short walk daily. And, good for you for encouraging her.

I asked our RO how long before Dan would feel better, have energy, be able to speak clearly, be able to drive, be able to work again...the answers were all the same..."weeks to months because everyone is different".

One thing that you might check on is her hydration...if she is still throwing up she might need some extra IV hydration...that made a world of difference for Dan.

And, is your mom taking anything to help thin that awful mucous? That, too, can help.

I wish you and your mom the best.

Donna,
Brachytherapy is fairly uncommon here, only a few that I know of have had it. I would guess that the side effects would be reduced due to the local very nature of the treatment. Especially since it uses gamma rather than ionizing radiation.

I know even less about HDR brachytherapy.

Most of the side effect studies have been done for prostate cancer.

This link may help:

http://www.ncbi.nlm.nih.gov/sites/e...list_uids=11958887&dopt=AbstractPlus

For me... 4 weeks post treatment my weight had dropped to about 9olb... I would sleep, wake up, puke, feed, puke, sleep, wake up, puke..... I think you get it. I couldn't walk to the bathroom without ricocheting down the hall way. I was so weak, low blood pressuare, wasting away, oh my gosh! & completely uncoperative with my family and loved ones who were just trying to help. I don't think doctors explain just how bad it can get post treatment.
But on a good note, i'm great now! Working full time and setting up my own business. For me things didn't start to improve until 12 weeks post Tx.
I do hope things start to look up for your mum soon though.
Michelle

[quote]The general rule is one month of recovery for each week of treatment.[/quote]Double ditto that. Recovery from radiation is a beeyatch. Like my RO told me, IT'S ALL ABOUT NUTRITION. I made it without a PEG, but had a tough time choking down 4 cans of Ensure every day, four 4 1/2 months, I ate no solid food.

1) Nutrition
2) Treat depression (Wellbutrin works for me)
3) Thyroid dysfunction coming down the pike

Best,
Riley

Thank you all so much for your input. It is so helpful. We had a good weekend - a physical therapist came in to help my mom. He will be coming twice a week to help her regain her strength, along with an occupational therapist. Baby steps are definitely the way forward, and although I am sure there will be some not so good days, I really appreciate the days that were better than the last. It is amazing how much I view an 8 minute walk as an accomplishment, and just have to hope that it is a sign of good things to come.

We have spent so much time in the last week evaluating her living situation. I know that she wants to go back to her own home, which I can entirely appreciate. I think we are to the point now where we are working to get her back there full time after her scans and appointment on 10/10. We will have to hire a full time, 24x7 nurse to live with her for at least a few weeks, but it is the only way it will work. This, of course, is the thought with the scan outcome being as good as it can be. I still cannot believe that the insurance company told us that they will not pay for 24x7 care and that they "expect family and friends to manage that". (This could be a whole different topic, and one that I do not dare venture into). I am just thankful that we have the resources to do that for a little while.

Thank you again. Donna, if you are reading this I am thinking of you and your mom today. I really hope everything goes well!

Amy

Good to hear you all are going forward- there wil be lots of reality checks along the way. And you just might have to "take on her Ins.Co., so let us know how that is progressing. Amy in the Ozarks