A Girl's Guide To Death and Dying, Cancer Style

I don't mean to be crass, and I certainly don't mean to be disrespectful, but a lot of people have been asking me about my experiences with my father's illness and death and I wanted to try and summarize my experience, mostly for myself, but maybe to help others. I have absolutely no qualifications as a mental health worker and make no claims that my experiences can be generalized beyond myself.

There are four stages to death and dying from cancer from a daughter's point of view. Diagnosis/misdiagnosis/no diagnosis, illness, numbness, and grief. I have experiences the first three and are still working through the last.

The first is perhaps the most difficult. If it's your first time let me warn you that this may be the toughest. In Western culture, we have the sense that medicine has figured out most of what ails us. We take magical pills, clone other mammals, and if we're lucky, only deal with intensive medical treatment occasionally and most of the time we walk away from it. With cancer, it is almost more magical process because our exposure to cancers are often the treatable type that people wear a wrist band, walk or run to cure, or generally survive, maybe missing some body parts or after a few months of chemohell, but for many, it is a life changing and life affirming event. As an observer, cancer was was akin to running a marathon. You worked really hard, suffered tremendously, and in the end, would never choose to do it again.

But after experiencing it, I realize how much the casual observer is misled by the wristbands and walks. Perhaps it starts with a routine test and a detection. Perhaps you're lucky enough to have a diagnosis after one or two tests. For others, a nagging pain or a few months of not feeling "quite right" can be a sign of aging or a sign of something more serious. This first period is one of complete, eyes wide open/eyes wide shut holy shit anxiety that flutters between "its nothing" and "its something". For me, all I wanted to do was scream, cry, dance, throw stuff, and generally cuddle anything. For reference we were told that my dad's symptoms were nothing but a problem with his spleen, he was scheduled for surgery, and modern medicine would take care of the rest. I popped a few bottles of champagne and celebrated with friends. The doctors were still worried though they didn't tell us.

When we finally got a diagnosis we shifted into problem solving mode. We had a problem, an enemy, and we were going to solve/slay the problem with our hard work, courage, and modern medicine. This was a period of doing, frantic doing. For me, this was almost the easiest part of the process because we were constantly pushed to the edge of our selves, grabbing snippets of sleep, having free reign to boss people around, and we could hover around my dad. I don't remember much of this only that is was the hardest month of my life. I read other people's experiences and can't imagine doing what we did for more than a month. I still think hold that once it becomes obvious that an illness is leading towards death, a swift decline with minimal pain may be the easiest.

I look back on this time, the month from diagnosis to death, and second guess everything I did and said. I feel guilty for any second that I wasn't with my dad or helping my family, and feel bad for those few comments that I made that were meant to be light hearted by came out all wrong. While I doubted everything that I was, I know now that I did everything right, or right for the time, place, and situation. There is no greater truism for this time than "we do the best we can".

Once word started leaking to friends and family, people started calling, writing, and emailing. I only called a few people, people who had know from the beginning, who didn't require background or context, but had followed along since the beginning. I found that initial contact was the hardest but once the tearful "I'm so sorry" and "yeah, he's really that sick" were over, the conversation flowed totally normally between friends and family. If you don't know what to say to someone a simple, "I'm so sorry to hear about your dad, is there anything I can do" is the best thing to hear. A deluge of "how are you", "I love you", and "I'm taking you out for dinner" was always welcome. Email was by far the easiest way to communicate and could be done on my own time, carefully, without having to guess when I would be home, emotionally stable, and in the mood to reach out to someone.

I actually haven't told some of my friends, the ones that I know through work or who have no connection to my family. When I see them I like to pretend that nothing happened and that things are exactly the same as they were on May 26th. Truth be told, its a little creepy but its like taking a little break from everything.

Given that most people know someone who has battled cancer, saying "my aunt had lymphoma" actually gives me something to work with and relieves the pressure of having to explain how and why cancer is so difficult.

In the later stages of illness, people begin to change. They start to lose themselves. I guess some people may be aware of this and others are not. Either way, it is incredibly frustrating to lose all control, not be able to go to the bathroom, and be forced to eat jello/pudding. I imagine you long for your life back. I imagine that we weren't the only family who's loved one lashed out, got really angry, didn't act like himself.

It slowly dawns on you that you're losing this person, like they are spending part of their time in a different place, in their mind perhaps, but definitely not in the world that you're standing in. As a sleepwalker who often has dreams that breakthrough into consciousness I actually totally understand this, its a bit like being in England, speaking english, but everyone around you is speaking mandarin. It should make sense, it should work, but there is not way to communicate through the barrier.

For me, this part totally broke me. I'm a caring machine, I can establish order in chaos, I can stay up through the night and still communicate what needs to happen, I can hover protectively and anticipate needs. All of these things made me a terrible care giver at this last stage. I couldn't understand who this new person was, where was my dad?

People talk about patients achieving a sort of peaceful acceptance of death but for us, it was a struggle. There was no acceptance, there was no peace, there was a primal struggle between life and death and it was clear that even my dad, the strongest, bravest, most positive man in the world stood no chance. He required heavy doses of medications to keep him calm and tried many times to get out of bed and go home. In his moments of lucidity he told us that he wasn't in pain and wanted to be there but as his mind separated from itself, there was clearly some sort of monumental struggle going on.

I knew he was gone when, all alone, I opened his eyes and stared into them and no one stared back. He might have been physically alive but he was mentally gone and I believe we are truly nothing in this state. Once he died, we all went home and slept for what felt like both days and minutes.

I was numb for about two months, actually I'm just coming out of it. I took a few days off, delivered the eulogy, caught up with some people and was generally functional. I didn't think about it and I didn't think about much other than picking up the pieces, grocery shopping, car maintenance, a bit of travel, work, work, and work. People came out of the woodwork to support me and I think I talked a lot about my experiences and how my personal, non experiential philosophy was right all along. For most of the time, there is still a lot of stuff to do, and its horrible painful stuff but you do it. You run on empty and feel somewhat brave for doing it. Having good friends around who see or talk to you often is really good because they can tell you when you mood has shifted and nicely recommend that you don't have another drink/go home/stop yelling at random people. At this point, I kept repeating myself, creating mantras to reassure myself that I was okay with what happened "Some people have it much worse", "He lived a good life", "We're born, we live our life, and we die" all of this makes thing feel better but in a moment, if you ask a question like, why does idea make you feel better, the house of cards falls, makes a mess, and needs to be picked up. But most of the time the mantra works.

Now, the final stage. Life after death. Well, so far, its been lonely and bittersweet. I am slowly thinking less about the illness part and now happy memories of my dad are crowding out the bad ones. That's all I can say right now. Perhaps for friends, this is the hardest part. All those other stages take a really beating on a friend but somehow they're still there when you need them but I imagine that I still sound like a robotic healing machine who only cries, repeats, and talks only about herself. Sorry. I'll go back to working on my listening skills in a little bit.

In a Nutshell
- You can't judge anyone. This is a very hard part, especially for control freaks like me. See number 2.
- Trust yourself. Most people don't have a lot of experience with this so just do the best you can when you can.
- Friends: You should try to stay in touch. If someone doesn't want to talk right now, it feels really good to know that there is someone out there to talk to.