I belong to a couple of advanced breast cancer forums and recently there has been a spate of deaths of members with Stage IV breast cancer. Just in case anyone doesn't know what this means, here is a hint ... there is no Stage V breast cancer. These deaths, combined with another post, have brought into focus the guilt that I feel that I have not had a progression in four and a half years, and that I am still alive. In short, I am still waiting for the other shoe to fall. I guess this can also be called Survivor's Guilt. It is not only guilt it is confusion, according to statistics I should be dead by now, so how do I deal with this unexpected time.
The unpredictability of this disease is one of the difficult things to live with. I know that I looked at statistics when I first had access to the internet after my diagnosis and all it did was scare the b'Jesus out of myself. It is not a disease that has a specific time scale, "the fever will break on the third day" type of thing, but we all incontrovertably know that it will get us one day, so when things are stable it can be a bit unnerving. Since I had my right hip replaced in January 2008, because the cancer had spread to my bones and caused a pathological fracture, the scans have shown that the cancer has retreated or stayed stable. The recent blip where the ureter problem could have been progression has really been the only serious threat to that stability. So why do I feel guilty when I hear about the progression of other people's cancer?
The thing is that when you are told that your cancer is incurable it becomes fixed in your mind and there is an expectation that you will not be able to continue a normal life. Although my diagnosis with Stage II in September 2007 (which would have been Stage IV if they had listened to me) I met with calm acceptance. My mother had breast cancer when she was about 54 and had a mastectomy, but did not have a recurrance and died 15 years later of something unrelated. My expectation was that I would be the same and I was not really phased by this diagnosis. So I don't automatically consider cancer to be a death sentence even though I looked after a friend 8 years ago when she was terminally ill with stomach cancer. But to be told that your cancer is incurable is a whole other ball game, and it was one that was not so easy to adjust to, and in particular the concept that the oncologists are not trying to save your life; they are giving you palliative care as and when necessary. So the concept develops in your mind that your time is limited, but then time passes and you are still here and more than holding your own. This is bewildering and takes time to adjust to. All of us do this in different ways and there is no set way to do this, but this is something that no one tells you, and I for one felt like a wimp and a failure that I couldn't maintain an outward demeanor of being completely in control.
One of the first things I always tell anyone who has just been told they are Stage IV is that their sense of shock and dispair is completely normal. So maybe survivor guilt is also completely normal? Maybe especially for me who has had depression for many years and who has even begged God to let me die. I have no husband, no children, so why are people who have someone close and children dying while I stay alive? Is it because I have actually survived years of depression by having this inner streak of determination to just keep going? To keep on putting one foot in front of another? Maybe this is God's way of letting me know that I actually do value being alive by teaching me that there is a limit on how long I will live.
Let's face it, how many of us have really thought about this when we are younger? My father died when I was just about 18, my mother when I was 29, but they were the older generation. Time shows you that you become the next older generation eventually especially if you have a family who are spaced out so much in years. My younger neice is 17, I am 52, my mother would have been 91, and my father 113! One of my great-grandfather's was born in 1829. Until we are faced by our own mortality the future seems to be, well, just there stretching out in front of us. There is the feeling that certain things can be put off because we can do that next year, or the year after ... and on it goes.
I don't think that being Stage IV takes away your future so much as it brings focus to the present. It makes it more important not to waste time on things that will not inspire us; it makes you see the need to just cut the crap! But for those who have young children I feel as though they should have my extra time that the stats say I don't have. But there again maybe this is showing me that I ought to get some joy out of life by living for today.