Hi everybody,

I

2 months tops under "normal" circumstances. My doctors weaned me off of them about then. It certainly mitigated the constipation issues rather dramatically. At least I was able to spend signicantly less time in a fetal position on the bathroom floor ;-)

Your moms issues do seem to be a little protracted but the exposed bone issue might be complicating that.

I had ear pain for quite a while as the eustacian tubes were damaged from the radiation. It has all resolved since.

Parent always say "they're fine" - they don't want to worry you.

She's doing stuff pretty early - I was basically a homebody for about 6 months (but we're all different).

Hi Dani,
There is something you need to realize honey and it's that your mom is never going to be "her happy, carefree" self again. That is one of the hardest stages to get through in recovery, realizing that we will never be our old selves. Now, just so that doesn't sound so scary, let me tell you that the new me is having a blast with life. There are times, late at night when I'm alone, that I feel sad and miss my old self, miss the expected longevity I always expected, but other then those times I live a wonderful life. What I'm trying to tell you is don't compare your mom to how she used to be. Rather, help her find her new self.
I didn't take one ounce of pain medication after the last day of my radiation, didn't feel I needed it. BUT, I had a Peg tube to rely on for nutrition and I did for months after radiation ended. I finished radiation on July 15th and spent the day with my youth team at Busch Gardens on August 8th. Others don't leave the house for months, it all depends on how our bodies react to treatment.
The exposed bone issue seems to be your moms source of pain and I would push to get that taken care of asap. Like Gary, I had ear pain for months and months. Gary was the one that made me feel better about it. Every so often I will get a little pain but nothing like I used to have.
Also, Dani, the few months after treatment are tough because we tend to get depressed. I felt better the month after treatment then I did the second month after treatment, due to my mental state.
I hope you can help her get the bone situation taken care of and that she stays on the road to recovery.
Take care,
Minnie

Hi Dani,

Nutrition is the only way the body can heal. If your mother is still losing weight, there is a reason why she doesn't look healthy. I know with all the pain it sounds like it would be difficult to eat but without nutrition, the body will feed off of itself. This is not good. With the pain wearing her down all day, she will not eat and without eating, she will not heal. She is in a loop and somehow something needs to be done to break the cycle. There is no pain worse than deep bone pain. It sounds like the doctors are doing something to address the pain. It might help if you steer your mother towards measuring her pain a few times during the day. It's the old from a scale of 1 to 10 how would you rate the pain. Maybe something will stick out as far as a time of day or something. At a minimum it will give you data to go back to her doctors and say look, her pain is always an 8 to 10 and this needs to be managed much better to give her some quality of life.

The coughing when eating or drinking, unfortunately, could be another "new" life event. I still cough and it has been almost 10 months since the end or radiation and chemo.

I don't think your mother will ever tell you how bad it really is but maybe you should let her know that it is okay to feel crummy with all she has been through. Get her to process some of the depression and help her see the sunny side of life. She has a lot to be thankful for, including having you by her side!

I am sorry she is having to go through all this pain and the lingering issues of this horrible disease. Get her body healthier and good things will start to happen.

Ed

Dani:
I finished my treatments (chemo/rad) on May 11 and I still cannot swallow without coughing and eating meat is out of the question.. I am no longer on narcotics but still have some on hand, just in case.

Hey Dani,
My husband is now almost 5 months post chemo/radiation. He is now eating most things, but has almost no taste buds or saliva, which makes eating hard and he does cough and choke still. He had and used his PEG tube from about the 3rd week of treatment and for a total of about 5 months. It was a lifesaver for him...he could not eat or drink for almost 5 months. He felt worse the month after treatment ended. He does feel much better now. It just takes a while. He will be starting back to work about the 3rd week of August. He has been off on disability since his rad. neck dissection on Christmas eve. These things take time...hopefully, they can help do something about the exposed bone...sounds painful. Dan was on major narcotics for a few months after ending treatment. He's off everything now except Protonix for acid reflux disease.
Take care and God bless,
Debbie

Thank you all so much for the responses. They really help my mom relax because I relay everything you guys tell me.

Minnie, I know that she won't be the same but I think its just a matter of will she be even close because right now she is nowhere near the person she once was. She swears a lot more about this f****** diesese and rarely smiles which is so different than she ever was. She grew up a preachers daughter and is a far better person than I could ever hope to be. It kills me to see her like this. She's even made comments that if she has to live with all this pain that she doesn't want to live. I have suggested anti depressants but she wouldn't hear of it. It was even difficult to get her to take the pain medication because she didn't like the feeling of being medicated.

I will definately keep you guys posted after her appointment on Thursday. My sister and I are full of ????'s for her doctor and I'm definately going to work on getting her to eat more.

Thank you all!
Dani

Hi Dani,
It sounds like your mom is really depressed. I'm sorry to have taken it so lightly and chalked it up to you thinking she would be the same as before cancer. It sounds likes it's alot more involved then the normal process of letting our old self go and embracing our new self. It sounds like pain is the main cause of her distress. Continuous pain must be a horrible thing to have to live with. When does she go to the doctor again? In fact, I wouldn't wait for her next appointment, I'd call her docs and make them understand your moms condition. She doesn't need to have all of this pain and I know it must be tough for you to see her like this.
The first priority is to take care of her pain. Please keep us posted and let us know if you need any help.
Take care,
Minnie

Minnie,

No reason for apologies I just didn't realize that she was experiencing this pain until I actually saw first hand how she is 24 hours a day. I want to see a glimmer of her old self and its just not there yet. The only thing that makes her smile is Keeley (my baby) she adores her and Keeley loves her gramma sooo much. Over the two week vacation she lost 5 more pounds. 120 for a 5'8 woman doesn't sound that bad but believe me she is a medium boned woman and her skin is saggy all over. She once had strong muscular legs that look like sticks now. It just really breaks my heart to see her like this. Her appointment with the ENT is tommorrow so I will know more then. I'll let you all know what happens. Thanks again for all the support and suggestions.

Dani

Dani
Moms are worse than kids, we are not suppose to boss them, you are going to have to, when the pain is better controlled and she is more in control she will forgive you ... go for it girl.. it's what i am doing, Mom don't like it but tough.. I want my Mom well again..
sunshine... love and hugs
Helen