Questions about complications from stage 4 metastatic bladder cancer

My mother had bladder cancer surgery in August 2007. It was stage 4 (it went through the bladder and completely covered the outside of her uterus). After much thought and prayer, she decided not to undergo treatments. Everything was fine until January 2008 when her oncologist ordered a PET scan which revealed (after biopsies to confirm) the cancer had spread to lymph nodes in the groin area of her left leg and two areas in her chest area. At this point he gave her about a year to live. Again, everything was fine until October 2008 when she began having severe pain in her back. A CT in the ER indicated spread to lymph nodes in the back. After a bout with constipation she left the hospital under the care of hospice (at her doctor's suggestion). After another bout of constipation (which almost killed her) in November of 2008, again everything was fine..she was doing everything she wanted to do, in fact you would never know she had cancer. This was until end of May this year when she began having some swelling in her left foot and ankle. This quickly became swelling up to her knee, then up to the groin area. By the middle of June, the right leg also began swelling. After too many details to mention, she was finally diagnosed with lymphedema in both legs. During this time we also began having problems with her ostemy bag, going from changing it once or twice  a week to daily. After consulting an ostemy nurse and lymphedema specialist (on my own, hospice has been no help with this) they both attributed it to the protein caused by the lymphedema and that "she is not as vertical as she was before" meaning that she spends more time in bed than before. Lymphedema therapy isn't an option at this point, the lymphedema specialist isn't sure it would work and guessed that it may cause even more problems than she already has. Her pain is mainly in her left knee and her back, but is managed through hospice pain medications. My main questions are, has anyone else had lymphedema in the legs (most of the information I have found online is either due to breast cancer or people were born with it), what worked or didn't work for you and how can I expect this to progress?Any information would be greatly appreciated and more than what I have been able to find out from hospice. Please don't suggest I talk to my mother's doctor and nurse, as the last website I tried suggested. We have seen the hospice doctor once and personally I don't care if we never see her again. She may be very smart (as our nurse keeps telling us), but she apparently doesn't trust her own judgment, is very slow to make any decisions and doesn't like suggestions made by our nurse or us (she likes everything to be her idea). Our nurse is very nice, but knows very little about anything ostemy related and seems to know even less about lymphedema. Once again I have decided my mother is my only patient, so I am going to have to know everything I can so we can make the best decisions possible.

Katie Author