Jompy

Sometimes I feel so alone in this journey so it is nice to know that folks in cyberland are listening to my rants. Thankyou all so much for your words of encouragment and it did feel good to get that all of my chest. Love to you all Joyce

Hi, I am a caregiver to a sweet man that has a developmental mental disability and mental health illness. He has been terminal lung cancer that has supposedly spread to his bones and to his liver. He has mets to his spine and was given radiation to that area back in September that helped with his back pain for awhile. He was taking chemo but at the beginning of December he had a bone scan that showed the cancer had spread to several different areas of the bone. Chemo was terminated and the doctor said that he would start to deteriate quickly and would probably only live another two months. He was given morphine for the pain. He did well in December, started going downhill in February and the pain medication was increased in March. He started spending most of his days in bed, and he quit eating. I gave him Ensure in his coffee and he had about a can a day but that was all for the most time. I watched him get thinner and thinner and weaker and weaker. By April, I was told he only had "weeks" left. He continued to get weaker and thinner and needed assistance to get up and use the washroom and he slept most of the day. He was no longer able to dress himself. He complained about the morphine so he was switched to dilaudin. He continued to go downhill and by the end of May, he was refusing to take any pain medication. He had a couple of seizures, which could be because the cancer has moved to his brain or because of withdrawal from the pain meds. The doctor wanted to do a scan to see how the cancer had spread but he refused every type of test, even a blood test. He was started on a steroid to reduce the swelling on his brain. Now, two weeks later, he is wide awake and alert and eating once again after not eating for 3 months. He does wince when he gets up but the rest of the time he seems to be resting comfortably. Phlegm in his throat has increased but other than that he seems to be having no trouble breathing. Now I am wondering if it was the pain medication that was causing all this weakness, loss of appetite, loss of weight, and sleepiness. I know the steroids can increase his appetite so that is probably why he is eating again. I am really feeling quilty because I can't help but wonder if it was the morphine and not cancer that caused all his symptoms. I keep thinking "What if it's not cancer, what if it was the drugs that did this to him" Maybe instead of doing palliative care, I should be treating him with more aggressive "cure" tactics. I need to know without a doubt that his cancer is in fact growing and consuming him but he will not agree to any tests. He is so frail and weak that I can't see how he can last much longer, but I thought that in March when the cancer destroyed his voice. When he quit taking the pain medication I was so sure that he would be overcome with pain but it turned out to be the best thing. I am just venting away here. I guess I won't be totally convinced this is the cancer until he has taken his last breath, and even then I think I will always have to live with the thought that he may have been so much better for so much longer if we hadn't given him pain medication. I am really beginning to hate this job and the terrible decisions that go with it. It's a no win situation.