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I know exactly what you are going through. I just got home fro another 14 hour day with her at the Hospice center. Each day is different – some good – some bad. Her goal is to get to go home and we are working on it. She is bedridden after falling twice in a few days from her legs just not able to hold her. Her stomach is huge along with her legs fro the fluid retention. (40 lbs. total) They did try and relieve the pressure on her stomach, but there was not any fluid, her liver had nearly trippled. Not to mention the three hernias that she had developed since going off chemo. We have to use a lift to move her from her bed to a recliner or wheelchair. She has to use a bedpan (which I believe is just as much of a side effect of this horrid disease – of the humility and shame she endurs) . Fortunately, she does not have much pain (other than from all of the scrapes and brusing from falling).
My thoughts and prayers are with you – but know there are others that share your pain and helplessness.Hi Cherbourg – my Mom is also 76 and was diagnosed with this hellacious cancer in May 2007 – I just left the hospice where she is now. She was doing so well – but then her body could not take the chemo anymore. As I was reading this post it was uncanny as to the similarities as my Mom also has Hep C from a blood transfusion in the 60s when she had complications during a hysterectomy. She is getting weak but still is trying to be so strong for my brother, my son and his family who all visit her daily. It is very hard on the kids 8 and 13 who also just lost their Great-great grandmother (96) from colon cancer.
Due to the Hep C she also has cirrohsis. Has your Mom been diagnosed with that too? She had gained over 30 pounds of fluid in her legs, and her liver is so swollen on her petite frame of 112 pounds previously. My heart goes out to you, but traveling this journey together helps. This is such a supportive website and I have learned so much from it. My prayers are with you and your family as well.My thoughts and prayers are with you. My mother is in a Hospice facility and wants to go home – but is is unsafe for her as she is so weak and is now bedridden. It is so hard to see the ones that protected and loved us slip away and not be able to ask for their guidance as we are trying to do the best we can for them. May tomorrow be a little better for both of our parents.
I would love to participate as I have scoured the internet for a way to bring awareness to this horrific cancer. No one seems to know anything about it. In fact, the insurance company told my Mom that the doctor had the wrong diagnosis since there wasn’t a “code” for it!!!!!!!!!! It took quite a few letters and many phone calls to get them to acknowledge her treatment and doctor visits. In fact when I applied for Family Medical Leave, my home office said that they had never heard of if and proclaimed it must be a self diagnosis!! Angry, hurt, saddened, I fought along with the doctor to be able to stay home to care for my Mom.
Along with the pain and suffering of the patients they have to go through many explanations and the expense is diminishing everything she has worked hard for. My Mom went through 16 months of chemotherapy and then discovered the treatment was not working anymore and then you come to the end of the road. There fight and strong will is just taken from them in a matter of days. I hope this will help bring some awareness and some day we can have walks and sponsored benefits for this not so uncommon any more type of cancer. A loving daughter’s plea.Thank you to all that replied. It is so helpful to know there is such a wonderful support group out there.
Gavin – This is a wonderful site and it brings us all closer together as we fight this battle together with our loved ones. I think we are all so afraid of the unknown and it is comforting to know there are other people out there who are going through the same things whether it be the patient or the caregiver. Keep up the posts and God bless you and your family. I am in the fight with my Mom who was diagnosed in May, 2007 and is now in Home Hospice care.
