So I did promise her that I would broach the subject of good intentions. Here is a bit of what she said to me..... "well meaning people that call, write, e-mail etc,etc, about the latest cure for cancer. You can say I said it.But I was thinking about that today I know they mean well but it drove me crazy. It was Pete's journey and how many times can you go up & down that ladder?"
Please, I know you love us, I know you want this terrible disease to go away. I know the news is full of tidbits of stories and information about new treatments, drugs, alternate treatments, etc. But please, please, no one has ever given me an idea that I did not already look into, that I was not already trying, or that had nothing what so ever to do with my particular cancer. I am sorry if that sounds mean or judgemental, but really, it does not matter what the chronic disease, people just feel that they have to share this knowledge with you. And how kind can that be? Well, actually, it is overwhelming to us living with the disease. We appreciate your love, and good thoughts and kindness, but please, do you want an idea of how to best support us? How best to support the care giver taking care of someone with a chronic disease? Just listen. Just love us. Ask if we are happy with our treatment. And if we say something that allows you to give us your ideas, your advice, your knowledge, then you know we are ready to hear what you have to offer. But up to that point, please, please, do not share this with us.
I know that sounds opposite of what someone with this complex disease should be. But you know what everyone who finds themselves in this type of a situation have in common? We are all overwhelmed. We get our feet back under us, each at our own pace. Each with our own ideas of what we want. For those who will talk to you about alternative treatment, then they may be more open to what you have to give.
People with my cancer. The best treatment is the one I am on. I have always been a fairly healthy eater. Now? Well, sometimes I am more interested in getting calories then anything else. But it does not matter what I eat, it does not matter how I think, this disease is going to try and find a way to kill me. The treatment I am on is the one that has given the most people the longest highest quality of life possible. And I have a positive outlook, even though science has said that makes no difference statistically, it still makes it easier for me to live the life I want.
For Pete, well, by the time they found out what he had, there were not a lot of options. Pete tried his best to try and find a way to spend as much time as possible with his precious Jan, but the time ran out. So now, telling Jan about treatment options is just plain thoughtless. To now ask about his treatment minimizes his life.
This was an amazing man. An intelligent, loving, kind and generous man. He died of lung cancer. But his life was not about lung cancer. That is simply the disease that finally took this wonderful man physically from us.
I do hope I have not been offensive. That was not what I was trying to do. ......... anymore then when you try to talk to me or "us" about treatments. I know it is done out of love, out of concern, out of an attempt to deal with something that is so hard. But think about how hard it is, especially for the care giver to constantly have people start telling you what you need to do.
I am trying as kindly and sweetly as possible, say, Thank you. Thank you for wanting me to be well, to not have this disease. But please, don't try and tell me how not to have cancer. Or how to get over the cancer. It simply doesn't work that way. If it did, no one would have cancer.
Keep loving us. We need that love. Keep hoping that we will get better. Keep sending us positive energy, remember us in your prayers, and thoughts. Please do not push what you heard on TV, or saw on the Internet, or heard from a friend, or even experienced in your own life on us. We do not need to disappoint anyone else in our life. And trust me, not being able to live as long as everyone wants me to, is hard enough. Each of you trying so hard to keep me alive, puts me in a very difficult place. It puts me in between your wishes and my reality. That is a hard place for me to me.
Just imagine how hard that is on the caregiver of someone with a chronic disease. Just imagine how that makes them feel for you to imply with your statements of what they need to do, how they are some how letting the most important person in their life down. The best care giver understands that all they can do is love and stand by and watch the other person suffer. It is the worst place in the entire world to be. I would rather be the person with cancer then to be the caregiver.
I have only cried and almost lost it once. That was in the hospital the day I found out I had cancer. For a brief moment I thought the cancer had already spread throughout my body and was one of those situations where they sew you back up kind of thing and say, "there is nothing we can do." And there I lay on the gurney feeling so very very guilty that I had drug these two people that I adore into the hospital with me and I was just going to die. I was going to die on them. I was letting them down. The fact that I would be dead wasn't then and still isn't now a problem for me. But that was my first time understanding how this disease that I have would affect everyone else in my life. That is a lot of pressure.
So, please give all the people in the world dealing with a chronic disease, and even more to those caregivers taking care of them, a break. Don't tell them where to go or what they should do. Just support them with their choices.
thank you for being here, and listening to me.
And Jan, if this helps even one person deal with what you have had to deal with, then thank you for suggesting that I write about this. I have gotten to where I don't discuss things, I just talk about my life. And sometimes I think I should be deeper and discuss important topics. And I do sometimes, but mostly, I am just intrigued with where I am at this very moment. This moment of life with death patiently waiting. A life full and busy and happy and made worth while by so many precious beloved ones. And I am so very amazed to have had the opportunity to know so many wonderful and amazing people. That deep thoughts get pushed aside by sheer gratitude of a life I have always lived as fully as possible, but never really understood how simply perfect my life is.
well that is just another gift.
I love where I am.
I love my life
Just as it is.