Mulling over life with cancer

at the ocean on our one day vacation, early Sept.

As I sit here writing about cancer I look up and watch a beautiful flicker enjoy breakfast in our apple tree. My thoughts drift, the big C seems irrelevant. Our human concerns and fears about anything is put into perspective by the wonders of Nature.

I’ve never written much about cancer before – my experience, how I feel about the politics and business practices regarding cancer treatments, cultural fears, etc.  When cancer occurred in my body in previous years it was during times I was overwhelmed by other life circumstances and had little time or emotional reserves to think about it much. I went through the recommended surgeries and continued on with the responsibilities of my life. 

This is my fourth go around with cancer and I’ve decided to indulge in the privilege of experience and write a rather rambling expose. My disclaimer in telling “my story”, (which you can read, or not, in the box below) is the first “rule” of telling one’s “cancer story” – every single person who had, or has, cancer has a story that is uniquely their story. I speak only of my own experiences, thoughts and opinions.  Every type of cancer is different, how it manifests in a person’s body is unique, treatment options, both those offered within western medicine or in other treatment  modalities, and the choices they make, or don’t make, are personal, often based on life values, general health, life circumstances, etc.  There are no two “cancer stories” alike.

I’ve been telling more people this time around about having to live with and treat cancer, and been more observational about other people’s responses, comments and the assumptions made (ah yes, assumptions) when I tell them. I am amazed, touched, sometimes angered, sometimes hurt, but overall just observant of how the word cancer affects people.  Few people know much about cancer, even those who have lived with it (including myself) or even those who treat it, both ‘conventionally’ or otherwise. Good health care people anywhere on the spectrum of health care know the limits of their knowledge.

Here are some responses I’ve had from other people.

First the allopathic doctors. All 3 doctors I’ve seen have been genuinely sad and said they didn’t expect it to return in me. The oncologist I saw 21 years ago, who has seen me each reoccurrence, seems the most touched. The radiation doc regrets he didn’t offer me radiation in 2013, although his decision was based on my general health (see my story below). Regardless of how anyone feels about our too often inadequate, big business ‘health care’ system, there are real people working in it who care. However, their emotional responses have been hard for me to read, what do they really think my chances of survival are. The non-allopathic health care people I’ve consulted have also been caring and concerned, only one has made a comment that I did not find helpful, even disturbing.

Then there is everyone else.  

Rarely is it helpful for someone with cancer to hear third party stories about someone else’s cancer – such as your Aunt Sally who died of breast cancer or sister Bernice who had a new type of therapy for lung cancer and is thriving, or your friend George’s prostrate cancer treatment he flew to India for, or the cancer diet your neighbor followed and his cancer went away, for awhile.  Treatment options for people vary widely, since no two cancers or people are the same. What a person’s options are can be determined by many things. The stories that might be helpful are first hand stories from people who have gone through the emotional ups and downs, made the hard decisions, lived with daily fears, struggled through personal demons, insensitive health care providers (oh yes, I’ve had those too, in spite of having 3 good doctors). Yet often first person stories are only a little bit better or useful, at least they are usually told with understanding from someone who knows from personal experience. But they are not helpful when one’s cancer experience becomes a soapbox for someone else to tell their’s. Not helpful.

Other response gems:  

More than once I’ve heard “well, you’ve been through this before, I guess you know the ropes and will do ok.”  As if having cancer in your body is like getting a cold and the more often you have it the better off you are at coping with it.

I’ve had people immediately blurt out “my mother (or another loved one) died of cancer”, an understandable, if insensitive, response from someone whose only experience and knowledge of cancer has left them with the pain of grief.  I don’t mind these comments, though they are hard to hear emotionally because dying is always a possibility with cancer, especially a reoccurrence, but at least I know this person is hurting just hearing what I am going through and it might explain their discomfort and/or avoidance of me. And sometimes these people are very compassionate because they know how disruptive to family members a cancer diagnosis can be. They’ve experienced it.

How about this –  “well, if it’s just a little tumor in a lymph node that doesn’t sound bad.” (it actually wasn’t ‘just a little tumor”, nor in a node). This from someone who must have no idea how the body works or what the lymph system does.  

Some people become uncomfortable and speechless around me, they don’t want to think about it, they don’t want to think I’m going to die and they don’t want to ask. Not knowing what to say, understandably, they say nothing when they see me and what words are exchanged sort of fall on the floor. I’m left feeling I have to make them feel comfortable with me. I too would rather not think, talk, dwell on what I am having to cope with right now, but that doesn’t make cancer nor the emotional charge go away. It’s like the proverbial elephant in the living room – let’s pretend it isn’t there. That doesn’t diminish it.  Acknowledging its impact and putting the focus elsewhere, that would be more helpful.

Then there are the really good ones: “well, at least you have _______________ “ , fill in the blank – Mike, Abby, good health care, a place to live, whatever – comments that imply there are people in worse situations in life. Another version is “at least you don’t have________________” some other horrid disease. These comments amaze me, as if I don’t know, and am not grateful for, the blessings in my life. And yes, I know there are people with extraordinary health and other life challenges, some are even good friends of mine who I care deeply about, and yes, I know there are people without health care, not even the medicare I’m on (which by the way does not cover any health care I seek outside the minimal standard of care). Am I to feel good, or even guilty, about ‘just’ having cancer because I have a good husband, or whatever? I still worry about other people and get angry about the latest horrible injustice in the world. Life is messy, complicated, it’s not a competition of who is suffering the most! 

I knew a woman who had AIDS in the early years of the AIDS epidemic when treatment wasn’t known and most people died. She got AIDS from a blood transfusion she received because she had another rare and life threatening illness, one she had since birth. I met her in a workshop for people living with chronic health conditions. I went to the workshop partially because of professional interest and partially because of the chronic fatigue and pain I lived with. We got to know one another and I visited her whenever I was in Seattle, once she made the trip here. She let a busy life of advocating for services for women and children with AIDS at a time only gay men were getting any attention for life care services. She had worked for the state before getting AIDS and had been a real mover and shaker for people with disabilities. She was still a mover and shaker and organizer. A complex and brilliant person, she also was growing frail, suffered with a lot of physical pain, heart conditions and multiple complications having two major diseases, and she struggled with lots of emotional ups and downs. She asked me how I was doing once on a day I was not doing well and I told her I could hardly complain to her about anything. She told me what she was going through in no way diminished any suffering or difficult experience another person went through, she never made comparisons or felt less compassion for others due to her own life struggles. I learned not to dismiss my own struggles or feel guilty about them. And I learned that she, like myself, continued to have the caring for others that she had always had. Suffering does not take that away.

And lastly, there are the people who, in a grave tone, ask “how are you doing?”, a tone that implies I’m already the walking dead. Or the ones (often the same people) who want to know “where are you in treatment” as though there is a standard one-size-fits all plan that of course I must be following. Often this is to show they know all about cancer. No, no, no!  Remember the part about everyone’s ‘story’ is unique? And most people know very little.  And by the way, I’m quite alive, still making treatment choices, doing things to support my body, and frankly, for now, other health concerns are still the most disrupted to my daily life, and as before, to my cancer treatment options.  AND I don’t necessarily want to go into all the details of what lays before me with everyone who asks, especially standing in a grocery store! I’m so tempted to say “oh, I’ve decided to refuse all treatments and take a world cruise”. There are people who have made that choice, and for them it was the right choice!( I wouldn’t like a world cruise on a big boat crowded with people.)

So what is helpful?

There are lots of good articles written about the topic of communicating with people with cancer and other life threatening diseases. First, once again, it has to do with a person’s unique situation. My 2 cents is simple and I believe universal to most situations and people.

Listen – give a person a chance to talk if they want to, to say what they’re going through that day, or not. To share what treatment options they’re choosing, or not. Or to talk about whatever. Make no assumptions.  You don’t have to say anything that’s supposed to be helpful. Listen, acknowledge – it’s really no different than how we need to treat one another every day, cancer or no cancer. Everyone has life experiences that are unique because we are all unique.  Mostly people want to be validated and feel connected and cared about by others. Ignoring that someone has cancer, or another life threatening illness, or is going through some other life trauma, is ignoring their experience and thus them. Asking about it all the time does’t allow them the well-deserved privilege of deciding what and when they want to share their thoughts/feelings.  Share how you are doing. Living with cancer doesn’t mean a person doesn’t care about others and want to know how someone they care about is doing. (as noted in my story above about my friend).

And if you want to offer help, ask them what they might need help with, make suggestions, or offer what you feel you have to offer and can truly follow up on. Don’t just say, ‘call me if you need anything’. Unless you are someone’s very best ‘go to’ person, they won’t call. Every article I’ve read, and every person I have talked to with cancer or other life trauma, says they won’t call in response to this casual remark. People offer help but you never hear from them again. If your life is full up, if you are uncomfortable around someone with cancer, if you are going through your own life challenge, just don’t offer. That’s ok. Be sincere. Be specific.

For example, I do not feel sick from cancer right now, but from other health challenges. I feel the offers are meant only if I am sick from cancer, more specifically from cancer treatments, or if i’m dying. Mike took 6 weeks off work this summer and will likely be taking off more, he’s there for me in so many ways.  But he has his own needs, and now he is back at work and his days off are filled with doctor appointments, mine and his, appointments which, given where we live, always mean long days for us and leave us with little time at home. We are often exhausted at the end of the day. We have a hard time assessing what we need, there are emotional ups and downs and sleepless nights, and suddenly we realize we are behind on basic home chores. Mike is 73, has his own health challenges, I will be 69 next month. Our needs have to do with our life style, age, and very different than a woman with breast cancer who is younger, working and has children.  We hired a young friend a few weeks ago and that one day of help was a big boost for Mike getting caught up on projects needed be done before winter.  Not only did somethings get done, but he loved the time working with someone else here, something we do not do together much any more. Maybe these needs were not directly related to cancer, but how cancer, or any illness, can impact home life. If you’ve been through it, you know what I’m talking about.

I am blessed to have a few friends, a few near, others elsewhere, who check in, let me decide if I want to talk about my medical stuff, tell me about their lives, treat me as they always have, with perhaps a bit extra love and care, acknowledging this it a tough time. Our conversations are not grave, though sometimes we get teary, they don’t try to fix the bad days or experiences, they know there’s an elephant in my living room. We still laugh.  Sometimes about the elephant. Some of them have their own struggles, some have lost loved ones to cancer or other illnesses.

Life is messy.  All we can do is care and love one another.

Well, if you have read this far you are amazing! I hope I might have offered some insight. Now to get on with my day and go outside to see the wonders of Nature.

(A squirrel enjoying an apple for lunch. My “cancer story” is below the photo.)