In Harriett's case no one has ever sat us down and said anything remotely like, "You've got six months to live." We are so blessed for that. Can you imagine having an expiration date stamped on your forehead? Let's just get out a calendar and start Xing off the days. How do you feel when you are down to that last 30, 15, 5.... oh no! Tomorrow's The DAY!!Having a time reference for your ultimate demise is removing all hope. Harriett had a difficult time accepting Hospice care because typically that is reserved for those in their last six months of life. But it's all just a guess, an estimate. One hospice worker apparently did tell her she had six months. I didn't hear that and if I had I would definitely pulled her aside and given her the old "What For!" Actually, as far as I can recall, Harriett hasn't even been referred to as 'terminal.' Our Oncologist here in Kentucky has come close to it, but I don't recall her saying it. She's a very young, fresh out of med school doctor and hasn't developed much of a bedside manner yet. For the most part, she seems afraid to say anything. And because of that I really have to question some of the treatment Harriett has had. It's not appropriate for a doctor to ask you if you want such and such in my book. I think she should explain it, recommend it, and as the patient you can accept or refuse. I certain have wished for a more experienced doctor. Not for the actual care as much as for the personal interactions.Some might argue that having an expiration date would be a good thing. A time to get everything settled and prepared for your departure. A time in which you can use to do whatever you feel is important to your life's experiences. My thoughts in this regard are simple. We are all moving toward our deaths, so do what you want to do NOW. Why wait? As the saying goes, life is just too short. I believe that Hope is all important to a terminally ill patient. Giving up hope is giving up your life and becoming a soul lost and forgotten in the waiting room. Hope breathes energy and life into us. Hope may give us a tentative hold on tomorrow. And tomorrow and tomorrow and tomorrow. And who can say what will happen by tomorrow? A miracle drug? A genetic breakthrough? Divine intervention? As unlikely as any of it may seem, nothing is impossible, especially for those with hope. But somedays I want that expiration date. Not for Harriett, HELL NO! But I want it for me. My life and existence are so intertwined with hers, somedays I feel like I am the terminal one and have no future. My here and now are slowly being eaten away and my 'don't wait!' is an impossibility. I want my life back. I always speak in terms of "we" when I am discussing Harriett's care, cancer, treatment, day, mood, routine, appointments, or whatever. I am as much a part of it all as she is, although I will continue on after she is gone. I want to ask someone, "how much longer will this go on????" I want to know that I can make plans without having to depend on someone else to cover for me. I want to get a job and feel productive. I want to be part of my family's lives in a living and growing way. I know from caring for my Mom how much I took from my family that I cannot give back to them. The same is happening now. Is it so awful to simply want my life back? I don't want an expiration date, but I want something. Something that gives me hope that I have a future. I want to say to the Hospice worker, "I know you can't give me a date, and I don't want one... but can you tell me something like you'd really be surprised if Harriett was still here in....(insert the month/year)." I hate that although we are walking down the same tunnel together, that the light at the end will be different lights for us. But still, I want to see that light.
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