After Cancer Coping With The Instant Cancer Bond

So after you get diagnosed with cancer, it seems like everyone you know has cancer because:

You have met a lot of other people going through cancer treatment while hanging out at chemo, in support groups, your oncologist's waiting room, etc. That part is kind of nice. You find out you aren't alone in this cancer business. You have an instant bond with new friends.

Then you start hearing about all these other people who are diagnosed with cancer. You feel like you are supposed to be their friend too - because of that cancer bond thing again. Your cancer friends tell you about everyone they know when they are diagnosed with cancer because they have cancer and you have cancer so you can talk cancer all the time. And then it explodes, you meet and hear about more and more people with cancer and this cancer bond obligation doesn't quit. If someone you know  knows someone else with cancer, they expect you to become new best friends because you have that cancer bond so you must be alike.

If let unleashed, you will become swallowed by guilt that you are supposed to be friends with cancer people everywhere. But you have to learn to control the guilt so it doesn't swallow you.

I remember in college, I had thyroid cancer between my freshman and sophomore years. It was sort of an open secret - one some levels a lot of people knew I had cancer but no one talked about it. Back then cancer was evil and you were guaranteed to die soon.

Early in my junior year (I think), a male student I knew showed up at a party with another male student who I knew but not very well - who was now in a wheelchair dying from a brain cancer. It was a small school but we didn't have much in common. But now wait, we both had cancer so we could bond. How awesome! Not really. I felt it would be rude to excuse myself too soon because no one else wanted to talk to the guy in the wheelchair. But I also felt very much put on the spot because this instant cancer bond was there.

Finally I think I excused myself to get another beer or something. But I had felt trapped. Our mutual friend had trapped us together hoping to improve his dying friend's life by taking him to a party.

It was just awful. I felt guilt but there was nothing I could do. I did not want to talk to this guy anymore than he wanted to talk to me, we were not ready to compare cancer notes.

Another part of cancer coping is learning to manage that instant cancer bond. You can't let it suck you in so you get attached to every person in the world who has cancer (through that six degrees of separation thing) and bear their emotional burden of cancer. The guilt is killer.

While its nice to meet people with cancer and talk to them, you can't let it take over your life.

I Am Feeling Stressed

I didn't blog yesterday and am a little late today because I hadn't really decided what was going on with me. Finally (call me slow if you want) I decided I am feeling stressed. And I am beginning to figure out why I am so stressed. I have a lot going on. Nothing major medically but just too much stress for me.

Last month, in the spirit of doing something good, I decided to convince my husband we need to adopt a third cat. As soon as I asked about where are the good local shelters someone offered me her two cats that she needed to get rid of (because her son was moving home with his dog who didn't get along with the cats). [Maybe the son shouldn't have been allowed to bring his dog home.... but its not my house so I kept my mouth shut.]

We waited until we got back from vacation and picked them up a week ago Sunday. When we went to pick them up my husband said 'you are making a mistake' but I still thought I was doing something good.

They were two incredibly obese orange tabbies that had been locked into an unfinished room in the basement without windows for 'several weeks'. They were not in good shape. I still thought I was doing something good.

We brought them home and put them into a separate room and I put them on diet food. Except Sunday afternoon we had two cats. Monday we only had two cats for a brief period of time in the afternoon. Tuesday afternoon we had two cats for about 5 minutes. This Sunday morning, after reporting a lost cat to animal control, we then had two cats again at about 4 am. We also had two cats for about 30 seconds at 5 am this morning. One of them (I think its Jake not Ginger), can jump over the baby gate we have keeping them in a separate room. He keeps hiding in the basement (we think).

This morning I found someone had pooped on the laundry room floor and someone else had tossed their cookies on the rug in the finished part of the basement. I decided that's it. They have to go back. We took them conditionally - if WW III broke out in our house, they had to go back. Right now we have four cats who keep hissing and growling at us and each other. I can't take it.

Ginger (or whichever is not lost living in the basement) meows all the time when he is hungry - which is all the time because he is on a diet. He keeps me up. (Who names a boy cat Ginger anyway?) If I close the door to either his room or our room, I can still hear him meow. I don't sleep well because of my pain levels and other health issues anyway. And if one cat is not meowing, another one is, or growling, or hissing at each other and having a 'conversation' that keeps me awake.

I really wanted to do a good thing but I can't do this one. I need to take them back asap. Like this afternoon. I am getting rid of one today around 6pm. I just have to find the other one so I can take them both back.

I do feel guilt. But I also believe that I need to take better care of myself. I felt my stress level go down after I made the decision. I called my husband and he is okay with my decision (and is probably telling me that I was making a mistake in the first place.

I am not in the position to do good deeds until I am in a better place with my place (in a few thousand light years).

Sometimes I Feel I Am Being Lazy

I run into the problem that I feel like I am being lazy because I don't do much during the day often. Yesterday afternoon I felt I should have been doing more than just sit around most of the time. But I really was not up to more. Yesterday I did not have a good day. My right hip and spine were giving me so much pain I spent the afternoon doing a lot of nothing. I even used the drive through at Walgreens to pick up my prescriptions so I didn't have to walk through the store. Maybe I should have taken fewer books out of the library.

I was also really tired from having fun. I think I got about 10 hours of sleep last night. I was also exhausted. Completely exhausted. I need to do a lot more 'laziness' today and try to be productive while not moving around and recovering.

Today I am doing my usual Tuesday schedule which means I have nothing planned. I have to finish doing the laundry but I also need to rest. Usually on Tuesdays I have time to start projects that I can finish over the next few weeks. I think this week I will not start any projects. I will watch my garden grow as I do laundry and a lot of nothing.

And try not to feel lazy. But I need to be lazy. Its called 'recovering'.

About That Positive Attitude

Having a positive attitude with a bad diagnosis can be like putting lipstick on a pig.

The pinkification of breast cancer includes that perky little attitude with perfect make up and a big smile. Sorry but some days I just don't feel that way. I read this article about how the positive attitude requirement of breast cancer or other icky diagnosis can lead to a feeling of guilt. Um, yup.

Cancer (and other icky diseases) bring a whole range of emotions and some days, especially during chemo, a positive attitude can be fleeting. Or just not there if you are working on keeping your lunch down again. And after treatment its the same thing. And, as I said, its not just with cancer, but any crappy diagnosis, a positive attitude doesn't always happen.

I can tell you that my positive attitude can be virtually non-existent many days. Sometimes people ask me how do I do it. I think what are they talking about? I am just going through my life and putting one (aching) foot in front of the other (aching foot). Please don't tell me you are amazed by that. I'm not amazed. I'm just getting through my day.

The ever knowing 'them' tell us to keep our positive attitude. It will help us get through treatment better, prevent depression, and make us better people. Well, lah-di-dah, I try but I'm not going all out.

And if I am so happy and perky, what happens when I lose a friend or my next scan isn't as hoped? I'm not going to be so perky am I? And maybe I'm not going to be so happy. I might even feel a little guilt about my lost friend. And more guilt about a bad scan. What did I do wrong? Why did this happen to my friend?

That so-called required positive attitude can be a pain in the butt. I know it takes drugs and therapy to get through life sometimes.

The guilt factor

This is a less discussed issue relating to cancer diagnosis and treatment - the guilt factor. Sometimes its not even mentioned, while other times it is just brushed off as something you need to learn to live with.

Guilt is what got you to do what you were supposed to when you were a child. Guilt is what your morals use to keep you in line.

But then we feel cancer guilt which is different. Why didn't I get it and they did? Why did they have a recurrence and I didn't?

The more cancer friends I have gained, I have also lost some. I have the little list of in memorium blogs I used to follow, the group of friends on Facebook that are no longer here and are in memorium, there are the phone numbers in my phone that I know don't work any more. And when they do again, it will be a stranger's voice on the other end.

It seems now every month or two, or even more frequently, someone I know either has just learned about their stage IV diagnosis or I learn about their funeral arrangements.

Each time, there is a double dose of emotions the little tiny - "I'm glad it wasn't me" which is immediately followed by the huge "how could I even think that?" and then followed by cancer survivor guilt.

Sometimes the guilt lurks in the back ground and sometimes it emerges up front. It gives us down days but then we stuff it away and we learn to cope again. But its always there.

That other emotion with cancer

Survivor guilt often hits cancer patients later one. We are diagnosed and are hit with the why me mentality. Then as we come to accept and adapt to our cancer diagnosis, we tend to meet others who are also dealing with their cancer diagnosis. Then sometimes they are not so lucky and don't make it. Then we are faced with survivor guilt.

I can sympathize with this. I had thyroid cancer in 1981.When I returned to school shortly after that I lived in a dorm on a coed floor. That year the school had a mural painting contest on each floor. On the other side of the floor was an artistic student, in fact his father was an art professor, who painted an amazing mural. I can't remember if we won the contest or not but I do remember Andy the painter.

Within a year or so we learned Andy had an aggressive form of brain cancer and dropped out to focus on his treatment. He did show up at a party I hosted in a wheelchair once. But that was the last time I saw him. He didn't make it much longer. Why him? He was younger than me. That was when I first felt the first twinges of survivor guilt.

Later in life, I have met many more people with their own cancer diagnosis. Some are doing well, some are no longer with us. Some became very good friends as we talked about cancer and life with it. The closer I get to them, the harder it is when they don't make it. I have been to too many funerals recently.

Why don't they make it too? Cancer is treatable in many ways these days but there is still a long way to go. The guilt that I have made it twice through cancer and they did not make it through their cancer lives in the background.

This is another emotion with cancer that we must learn to cope with as we live our lives and go from doctor appointment to doctor appointment. This is also accompanied by the chronic fear that we don't want to get  moved to the category of 'the ones who don't make it'.

Sorry, I don't do guilt trips

Cancer deaths are decreasing each year - more than 1 million have been avoided through better screening, treatment, and prevention since 1991. But that is not enough:

'That sounds promising, but it's not as good as it could be, says Otis Brawley, chief medical officer of the American Cancer Society and CNNHealth.com conditions expert.

"Our data on cancer causation and cancer prevention tells us that we could have done a lot better," Brawley said.

Given all of the available information about how to prevent, screen for and treat cancer effectively, it appears that up to 200,000 lives could have been saved in 2008 if all of those known measures had been taken, Brawley said. More specifically, many of those deaths would not have occurred if more people hadn't been smoking over the past 20 years. That's because it takes about 20 to 30 years of smoking to develop lung cancer.'

And of course we need to factor in the inactivity/obesity/high calorie intake which is about to to take over tobacco use as the number one cause of cancer.

"Access to treatment is another major issue in avoiding cancer deaths, Brawley said. A substantial minority of cancer patients do not get the treatment they need, many times because of lack of insurance coverage.

More science needs to be done on other possible causes of cancer from environmental causes, such as air pollutants and chemicals in plastics, Brawley said."

I hate these articles. I didn't do anything wrong. They are not written to provide a guilt trip for those of us lucky enough to get cancer but they do. I belong to about a billion cancer message boards. On one recently, there was a discussion on how everyone thought they got their cancer. There were lots of ideas - over use of cell phone, living near a volcano, living on military bases, etc. My reply is I have given up trying to figure this one out and we cannot beat ourselves up for something we might or might not have done - its in the past and unless we have a way to undo things, its not going to happen.

I really don't do guilt trips related to the cause of my cancer. I don't smoke any more but if you asked a 'so-called' cancer specialist I am sure they would be happy to tell me I am eating the wrong things, not getting enough exercise, breathing contaminated air, using plastic, driving a car, playing in traffic, stressed out, have a pet, never had children, am too fat, or any number of things. I refuse to worry about this any more.

Here's the bottom line. I have had cancer twice. We know there are things that can raise one's risk of cancer but do not guarantee you getting cancer. I may have done them but billions of other people have done them as well and didn't get cancer. So unless you can tell me, what exactly caused my cancer, I will politely tell you now to please shut up. If you don't I may get crabby.