Liver cancer, parkinson's disease SUPPORT NEEDED!

dapperma · New User Joined: 13 Jul 2006 Posts: 5 Location: PA

This is tough to get started here -- Where do I begin -- I need support -- I am confused -- I am scared --

Mom has been dx'd with secondary liver cancer and at the present time refuses to have any further treatment done. Mom was dx'd with Parkinson's disease about 10-12 yrs ago. In the beginning of May, 2006 when mom was dx'd with cancer we were told as a family she would have 6 months left. She was dx'd only after being hospitalized for having severe diarrhea (which now as of today we believe was being caused by one of her parkinsons meds). We see no 'real' signs of the cancer and mom continues to be the same mom as she was back in Jan 2006 with only one exception - she was just discharged from rehab after having a total knee replacement (had the surgery done June 16). Doc's were hesitate to allow her to have this done b/c of the dx'd of cancer - but mom insisted and convinced the docs this is what she wanted. Mom was unable to walk due to her knee being so deformed from arthritis and a bucket tear. Her reasoning was she wanted to be able to dress herself - go to the bathroom herself etc.. - before she dies. We were told by the docs mom would be dead before she finished therapy. Therapy has been tough on mom which I knew would be. She is slowly using her walker but continues to have major difficulty on dressing, showering, and using the bathroom on her own. The one major difference is mom currently is not in extreme pain like she was prior to surgery. That does mean the world to mom. She has not been told that she had <6 months to live b/c as a family we know doctors have been wrong. From the post I have read here I see that most cancer patients have continued to move on up to the last week or day prior to going to the other side. I live close to mom and visit her daily to help her out with her many daily living duties. I read some of the symptoms here on what to expect as her days draw to a close - and yes, some symptoms mom does have but we have no idea if it is due to the cancer, parkinson's meds, or even her recent surgery. She is complaining about shoulder pain on the right side - and up until today from reading a similar symptom on a post - I thought maybe it was due to the strain from learning to use the walker. Mom has been confused, suffering from halluncinations, bladder control at times etc -- and again we are not sure if due fr parkinson's meds or cancer. She has lost weight, appetite has been slowly decreasing - as has urine output. I am so scared that one day I will walk over (I live across the street from her - she lives with my brother in a separate part of the house - like an in-law suite) and find her no longer with us. I know it will happen but just the thought of losing her is so scary - especially knowing that it could be quick. I really don't know why I am babbling on here cause I don't really think any of this makes sense. I have outside support - but truthfully I am really withdrawn to others in letting know how I feel. I guess I am looking for online support to help me deal with these last few months with mom. I talked to mom about having care come in the home to help her - but mom is stubborn and feels she can do it on her own - or have family help her out - she doesn't want others outside of family caring for her - she is okay with continued therapy at home but that is the extent of it all. I lost my dad suddenly after heart surgery - he never came back due to complications - which at that time I thought was the worst way for one to die - suddenly and family not being prepared. Now with mom - knowing that days are to come to a close - I think this is worse seeing one deteriote away - and would rather see sudden death any time. Well, thanks for at least reading and I will continue to post and welcome support from anyone

isidella

dapperma,
Thank you for sharing your story. It is inspiring that your mom wanted treatment on her knee and she got it. I think too many people are afraid of telling their doctors what they really want. It is true, things will probably get worse, but the timeline sounds vague. I would live with urgency right now though. Make sure that your mom has acomplished what she wanted to acomplish in life. Be with her. Show her you love her. You already know these things.

You may want to talk with a hopsice about what to expect when death nears. It can be difficult, but they can help. There is a great website that may also help. Here are a couple of links to it.

http://www.acponline.org/public/h_care/7-final.htm

http://www.acponline.org/public/h_care/8-moment.htm

Take care of youself and please continue to post if it helps.
Isidella

dapperma · New User Joined: 13 Jul 2006 Posts: 5 Location: PA

Isidella: Could you help me by explaining what you mean by the "timeline sounds vague" and "live with urgency right now". Thanks.

isidella

dapperma,
What I meant by my statements is that cancer is a complex disease and many other problems come with it. For instance, certain cancers can make people more prone to other serious and sometimes fatal medical problems, like stroke. When I said live with urgency, what I meant was, live every day to the fullest. People with terminal cencer can make a sudden turn for the worse when you least expect it.

I would seek out a hospice or a doctor trained in palliative care medicine for more advice.
Take care,
Isidella

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