THEY HAVE NO IDEA!!

Bon, how is your mom doing?

I guess I am lucky somewhat- tho I was dx at 35- I don't have many of the issues many women dx in their 30s do. The decison not to have children was already made well before any of it.

I am really into long distance hiking- I hiked the Appalachian Trail  (AT)from Georgia to Maine in 2001 (6 months, 2200 miles) plus I've hiked some other long trails around the country. Along the way I met DH and got him addicted to the idea of doing a long hike. We had planned to do the AT (again for me) in 2009, but my dx changed that- so this March we went-I had finished chemo in June 2009 , rads in august. I felt pretty weak starting out but I expected that- I felt like I would get better as long as I kept going- I did get better up to a point. It was SOOOO much harder than when I hiked before and I was often very demoralized, but we kept going.

We were hiking much slower than our fellow hikers , the AT community is a much like a travelling circus or tribe- I made lifelong friends my first hike.

This year, we ended up hiking for 4 months (tho taking off about a month of that in off days) and we did 850 miles. I am still trying to reach a place where I feel proud of what I did manage to do instead of focusing on the 1300 miles I intended to do but couldn't. I struggled the whole time, I do feel proud that I didn't give up after a week, or a month, or even 3 months. Money was ultimately the factor that made us come home. I was laid off my job three months before we left so we didn't have as much built up as we hoped.

now that I am home I feel even worse and its been so hot - all I've done is sit on my butt. I am up late all the time too.

Congratulations ladies on your 5 and 10 years.  I'm about a week or so away from my 2 year cancerversary.  DH is still listening to me if I don't talk about it too much.  He does not mind that I spend hours on line and making mastectomy pillows.  I mentioned yesterday that I wanted to volunteer for the Reach for Recovery program and he's really encouraging me to do it.  Oh, what if he's saying that so I won't even be home to talk to him????

I'm so impressed that any one can walk 4 miles  and hike for 4 months, 800 some miles.  I wish I could just build myself up to 10 blocks.  17 months PFC and I still have so much muscle fatigue I can barely make it thru the day. 

I went to the hospital this morning at 6:30 to be there for rounds with my Mom's docs. I needed to tell them personally what I expect. She isn't just an old woman with GI issues they can't resolve. She is my Mom and I she needs to be 'fixed' before she is tossed out to a nursing home or rehab center. (She is itty-bitty and everything, literally everything she eats runs out as diarrhea...this had been going on for at least two weeks now, without  much improvement).

So her physicians were decent with me and agreed to more aggressively deal with diet and other drugs...and they agreed to manipulate the system to keep her in hospital at least another few days. So, feeling like I'd made headway, I came back home and got in bed at 10 to see if I can get the headache and nausea to go away after my last TCH 6 days ago.  Well, Mom phoned at 10:30 in tears...a social worker went in and told her they making arrangements to send her to a nursing home today.  I had to call my friend, Pat, again and ask her to run interference for me. So she is there now, still trying to figure out what is happening. (God bless friends like her). The docs aren't coordinating their efforts. No one knows who is doing, saying, thinking or planning anything. There is no continuity of care. The docs are just pressured to move the patients out for fear that Medicare will disallow the entire admission, not just a day or two. Nothing is getting accomplished because they are running scared of the insurance coverage, not running scared that the patient is suffering.

Pray that none of us ever ends up in a hospital without a loud advocate at our side.  I'm so angry that this cancer has kept me waylaid and that I am not able to just stay there with Mom, keeping watch and making them accountable. I don't blame the docs. I blame the system.

Bon, the same thing happened to my Mom but she only had one two doctors at the time and we were able to get them to co-ordinate and get her moved to a "resident" floor and then she could stay till she was able to go home. I'm so sorry - I hate they are doing this to both of you! Hang in there hopefully they will work it out and thank goodness for your lovely friend.

Most hospitals have a patient advocate system.  See if you can get the office number of the patient advocate and call them.  If it's the social services (not the same as utilization review) talk with the social worker.

There has to be one doc in charge of the others---if not I think you and your mom can designate one or the other of them.  Then, sit with him/her and lay down the law.  If you cannot progress with this, get a hospital chaplin and talk with him/her and ask for help to get these folks in line and on the same page.

If none of the above works.  Get an attorney and have him lay down the law.

I fully understand what you are facing.  I did almost the same 20 years ago.  Mine was the opposite problem.  I couldn't get them to Quit treating my mom. 

Bon, I'm so glad to hear your Mom is doing better.  Not good that they still don't know what's going on, but at least your are getting some cooperation at the hospital.  Ok not so much with dietary dept.

Good God!  I wonder how many more of us there are wandering around with a chest full of metal?  I guess the titanium doesn't get hot so MRIs don't affect them?

wow, so much going on since I was here just a weekend ago.  Bon, so glad Mom is doing a little better - hopefully she'll be much better when I read the next update.  Somany, I had absolutely no idea that anyone ever had clips remain inside.  How the hell can they not tell us that stuff? Unfrigginbelievable.  As for the numbness with Arimidex, when I was having trouble getting weight down after I finally felt good enough to start concentrating on diet and exercise, I asked docs if Tamoxifen had anything to do with it. Nope, never heard of it.  Looked online and couldn't find anything, so I just kept plugging away, losing - no lie - a few ounces now and then.  Well, at least I wasn't gaining, which I had been.  Then I looked on the boards here and found a thread about Tamox so asked the question about weight loss, and the posts that came flying in sounded like they were all inside my head, saying exactly the same thing.  I still can't lose weight without severely restricting my food intake and amping up the gym routine (I go religiously twice a week for a solid hour, aside from any "regular" walking and exercise) but at least I no longer think I'm alone in that, and I know I'm doing my body good by creating some good habits, so I'm satisfied with just that - for now!  Yes, this website is a lifesaver 10 times over.  Hugs all.

Bon, so happy to hear that your mom is home.  Now the recovery can begin. Walks on the beach, movies at home and lots of sleep would be the perfect way for you and your mom to spend the long weekend.   Actually, it sounds like a good way for me to spend the weekend!

Love it Mary