I was going to come in here and post a Thursday post because my time is limited, but I decided to instead write here. There will be other Thursdays and other days to post topics.
I can relate though. As you know, my last chemo treatment was last Thursday. And already I am getting the questions that say well, now that it's over you must be feeling so much better! I know they don't know any better. I know they want me to feel better. But I don't and it won't happen for a while, and however I am after all of this is going to be a different person that the one I was before. I know that from my cancer five years ago.
I feel like I just want to tell them that "yeah, I am much better". But then their expectations when we do things is that I am back to "normal" and I don't even know what that means! As you said, they see you with your hair, and you are driving and appear to be doing better. And in fact you are! But better is not the same as before. They will never understand that. The only people that can understand that are people that have walked in your shoes.
That is why getting support on line at in person is so important. So I'll just say it again here, I hope other survivors jump in here and give you their advice. The other thing is that Gilda's Club in Grand Rapids might have an Allegan extension. I don't know what that means really. But if you'd call the Grand Rapids office and ask them, they could direct you to the right person to talk to. Their number is 616-453-8300. Gilda's Club is a free cancer support community! Check it out Sue. One line they are http://www.gildasclubgr.org
The other issue you bring up is much more difficult to deal with. My heart just wants to grab you and hug you because I understand. People don't want to think about dieing. Your or theirs. And they would do just about anything to avoid going there. You, on the other hand, feel that the topic is not out of bounds because of your diagnosis. And yet, you walk that tightrope line of when are you being fatalistic, versus optimistic, and ever versus realistic! In your situation, there are times when you are going to be of the three most of the time. And that is okay.
The reason I am comfortable with this subject is because I've had to deal with it so many times in my life. My Mom and Dad and Sister all died from cancer, and facing end of life issues, palliative care issues, etc. were things we did together. I learned that it was not about me. I needed to just be present with them when they wanted to talk and be okay when they didn't want to talk.
When my cancer came back the second time, they brought in a palliative care doctor for me to talk to and he takes care of me from a pain perspective. This cancer came back as one little tumor, which multiplied to three in a short amount of time. It didn't get staged beyond IIb because it didn't go outside of the lobe. At the same time, it did metastasize itself, and that it's likely this will continue to happen.
If we took what they told us, I would be thinking of living in terms of five years. Like you, I was given an amount of time to expect to live. There are a couple of schools of thought I have on this. #1 - statistics are just that. Large numbers of people make up percentages and variables that they apply to the masses. Us included. But we are individuals. Our bodies are unique to us. We aren't statistics. So is it five years? Is it one? I have no idea. But all of us are born terminally ill. We are all going to die. None of us know when that is going to happen. I could live thinking about cramming all my life in now, or I could just live today and live today as fully as I can. It is my choice because they don't know and I don't know.
Because you are living with cancer, you have been given an amount of time to expect to live but it is simply a wild a** guess. LOL. There are lots of folks here that were staged IV and have been around a long time. Hopefully they will come out and write to you!
So let's forget all of that. You will probably die from cancer at some point in your life statistically, right? But every one is going to die from something too, right? So we can live in fear of that, or we can analyze how we feel about living right now. And analyze how we feel about dying. They both go hand in hand.
I'm not going to preach 'religion' to you, but I am going to say that my faith tells me that being here is just a small part of my journey. I won't get into that much more than that here because this site isn't about that. But faith has sustained me through so much!
Lastly, you said you don't want to miss out on what you do have. Then don't! I know that sounds simple. It isn't at times. But don't. I have to scold myself almost daily to keep it simple. My mind always wants to complicate things. When the truth all we have is today. This day. Let's celebrate it today, hour by hour, or even minute by minute. Worrying about tomorrow won't get us anywhere, because technically tomorrow never happens right? By the time we get there, it's today. And what happened yesterday does not matter either because once it's yesterday it's past, and it means it is done.
Oh my gosh, I could go on and on about this. But mercifully I will end it now. LOL. I hope that maybe just a tiny bit of this message will help in some small way.
Judy in MI