There are some things one just doesn’t talk about when they have cancer. There are some things one’s friends just will not say to someone who has cancer. The reason is because it is frightening to think what you might say or do which might either make a person lose hope, or become so buried in despair they can never tunnel out again, and I’m not just talking about the person with cancer but the friends and relatives of the cancer patient. Everyone wants to keep hope alive. Everyone wants to keep a positive outlook and not dwell on the negative and yet the word cancer does nothing but bring a dark cloud of negativity with the word.
Cancer has hovered around my life for years. My father died from lung cancer which migrated to his brain. This was not surprising since he smoked Pall Malls since he was around 14 years old and died at the age of 66. My mother died about three years ago from IgA Lamda Multiple Myeloma within a year of her diagnosis. She was 78. Considering her father lived to be 97 years old, this was surprising. I had a friend with cancer in her neck around the same time as my mother was diagnosed with her cancer. She is now living a healthy cancer free life. A co-worker has prostrate cancer. He has completed his treatments and is in that in between stage of waiting the five years for any sign of it coming back. So being around cancer is nothing new. What is new is my diagnosis of breast cancer back in June of this year.
Everyone responds to the news of cancer differently. Those hearing of friends or family members with cancer usually respond with shock, sadness and a feeling of helplessness because they don’t know what to do or say to make the person with cancer feel better. They fear any words or actions will not be appropriate or make the person feel worse than they already do. A person diagnosed with cancer even when they have a pretty good idea that they have it still go into shock once it is confirmed. In my case, while I was speaking with the doctor I was calm, rational, able to think clearly, asking what questions I could think of at the time, but once I walked out of the office is when the shock hit, and the tears started to flow and the fear started to overtake me.
My fear was more for my daughter and how she would handle the news. Even now I keep thinking she is holding it all in, not allowing herself to think about it or feel the fear. I do my best to try and help her and to try and give her hope that I will come through this okay but that is difficult to do at times. I don’t want to give her unrealistic expectations, so if it ends up being a worse case scenario she can deal with it and it won’t be a complete shock. I don’t hide my conversations that I have with others from her and I don’t hide the prognosis. She doesn’t talk with me about it. She will ask at times how I’m doing and I am honest with her, especially lately with the pain. She wants to understand and she does help me when I ask her to. This is one way people handle the news. Basically not talking about it and focusing on other things, not necessarily pretending it doesn’t exist just silently hoping everything will turn out okay.
Then I have a couple friends who question me about everything the doctors say and everything they want to do or need to do. Because they are not here to go to the appointments with me they get this information from me along with my reasoning as to why I agree or disagree with the doctor or how I feel about my friend’s recommendations. Sometimes this tires me out and can be agitating but in other ways it is good because it makes me think and not just accept what a doctor tells me. These two friends are not afraid to talk about the seriousness of the situation and the possible results. One of them I will rely upon to take care of my daughter if I don’t come through this okay or get to the point I cannot take care of her. These are things no matter how good the prognosis is, all cancer patients think about. At least that is my opinion. I can say this and be at least 90% sure this is the case because I had an earlier brush with cancer when I was in my late twenties or early thirties when a pap came back questionable and when they did a biopsy the biopsy stated carcinoma when they removed more tissue from my cervix there was no cancer in that tissue. When I questioned the doctor about it he said the biopsy could have gotten it all. Even during that month or so from the time of the bad pap to the all clear from the tissue which was removed, I had the shock of cancer hanging over my head and though I had no child at the time my thoughts were very similar then to what they are now and focused on what I should do if I should die.
Cancer carries with it a notice of our mortality. It brings home how vulnerable our body and life is, how easily we can cease to exist. Some of us even in such a situation will not discuss their mortality. Others need to talk about it. While others will waver in between.
I’ve noticed my doctors tend to not tell me everything. They try to put a positive light on everything, from the prognosis of the cancer, to the amount of pain I’ll experience after surgery. Even afterwards when I approach them about the pain, they are cautious about admitting it might last for months instead of just a couple weeks. If I push they will give only vague eventualities like when I told my plastic surgeon I sometimes feel pain in my nipple where a nipple no longer exists. He agreed it was phantom pain and it was not uncommon. He then said that in the case of phantom pain with the nipple it was much better than phantom pain with a finger. When a finger is removed and a patient has phantom pain it takes much longer for it to subside, he said, than the phantom pain of the nipple and yet he would not express how long that would be in months or weeks or years. He left that part vague. I knew however that this type of pain varies depending upon the patient but what makes it different between patients no one says or maybe they do not know.
My doctors are learning I want to know facts and not sugarcoat things and yet they still do. I know they are trained to be as positive as they can be when speaking with the patient about such a serious prognosis that in some cases giving a patient too much information can cause them to teeter to the other side and lose hope and not fight. However, there are others like me who if told things are impossible will fight to prove them wrong. Pe0ple like me when given false hope tend to believe in that hope and not fight as hard as they could if given the truth.
For friends and family of people like me, I know it is difficult for them to know what to say and how to say it. At times I’m all about discussing hard facts, at other times if I’m feeling vulnerable and my nerves are stretched thin then I might not want to talk about it at all. Because I’m not always forthcoming about being in that vulnerable state they don’t always understand my silence and stammer around trying to figure out what to say. The interesting part is, I have found some people, very hesitant to ask how I am doing. In fact one person started to ask and then said that is a stupid question. I told him no it isn’t, in fact it is a good question because at least in my case now in the midst of surgeries people are not going to expect me to say “I’m fine.” or “I’m okay.” In fact, it is probably the one time if someone asks me that I know they want to know the truth and will listen. When people don’t ask me then I know it is because they don’t want to know or have problems handling the truth if I should not be okay or won’t know what to say. I try to be truthful but like my friends I also try to read between the lines as to how much information they can handle and sometimes I read them wrong and say too much or not enough.
I would rather in my life have people talk to me straight. If they don’t know what to say, then just say that to me, “Kate, I’m sorry for what you are going through, and I really don’t know what to say.” Then I can say, “That is okay.” and then ask them, “How much do you want to know or hear or see? I have no problem sharing everything if that is what you want to know.” Most people I know do not say this and so I’m left with not knowing what they want to know or see. I am hesitant to ask them because I don’t want them to feel pressured into thinking they have to listen or hear all about how horrible it all is.
There is something I have found interesting. Before my surgery, I had two friends, one I went to visit in Seattle. I had told her about the cancer, so I asked her one evening if she wanted to feel the lump. She without hesitation wanted to do so and did. My other friend came to stay with me for the surgery and I offered her the same and she also without hesitation felt the lump. She also was not hesitant about looking at the incision after the surgery. My other friend here when I asked if she wanted to see the incision was also not hesitant and later on asked to see it again to see how it was healing, especially the day I asked her to take me to the hospital emergency when I was having chills and hot flashes and the shakes this past weekend to make sure everything was okay. What was surprising was their lack of hesitation in experiencing everything. All three of these friends have been great. The first two are the ones I mentioned at the beginning of the post who question everything. The third is very good at listening and discussing how I’m feeling and the things the doctors want to do. She has very quickly become a very good and close friend. All three of these women are becoming more like family than my real family other than my daughter.
As I said everyone approaches the news of cancer differently. Some pull away, maybe not intentionally and may be the result of not knowing what to do and having problems handling the news themselves. Others because they just don’t want to face or be reminded of their own mortality and still others because they had to deal with cancer before and just can’t do it again. Then there are those who say they want to help but when asked find reasons not to do so and stay in the shadows off to the side. Then there are others who help in small ways. Then others who for some reason come through like heroes and before you know it you find a special friendship that you suddenly realize will last a lifetime no matter what happens.
I feel blessed today, because I have three such individuals in my life. All of them women who I would love to call my sisters. They are a joy to me and my daughter has also found a special connection with them as well.
I may have started out on this journey feeling very much alone but today I know I’m not alone and I’m building friendships and relationships that will last a lifetime not just for me but for my daughter as well. Though cancer has a dark side, there is also another side that if allowed becomes a rather amazing experience.