How I Live With Cancer

First things first. If dear reader you are reading this because you or a loved one have been diagnosed with cancer, I'm sorry and I wish you well. Second if you are looking for advice about treatment options or advice on managing side effects this is not that story. I am not qualified to give that advice. These are just some thoughts I have after six years on this journey.

A couple basic facts about me. I was diagnosed six years ago as Terminal, but not life threatening. I am holding there after six years. For me this is like a chronic disease. I will never be cured (of course people are learning new things all the time, so who knows). I am often told that I have a positive attitude, or I am a very positive person. I am here to tell you that is not because of some random genetic thing. It is a choice I have made, and a choice I sometimes work hard to maintain. I am happy to share some of the ways I do this.

First notice my title is how I am "living" with cancer not how I am going to die from it. This was the first thing I had to make a decision about after I got my diagnosis. What would I focus on? I chose to make it my goal to live as long and as well as I could with cancer. I make that choice every day, some days its an easy choice, some days not so much. But I am stubborn by nature and I have so far been able to win this argument with myself each and every day. Besides the only difference between me and people without a similar diagnosis is that I know what I am most likely to die from. Nothing is guaranteed, I could get in a car wreck, have a heart attack, meteor could hit my house while I'm sleeping, who knows, might as well just get on with life. So I take my health seriously, I listen to my doctor, I do my treatments and then I live my life. Here are some things I have learned along the way.

The people that love you are having their own experience with your cancer. You can't change it for them. You can't tell them how to deal with it and you have to let them experience it the way they do. Some of them are going to surprise you because they have strength beyond what you ever expected. Some of them are going to disappoint you. Some of them are going to drive you crazy by researching every word your doctor says and telling you to "try this or that". Try to remember they all love you and they are doing the very best they can. Remember it is ok for you to support them from time to time.

Remember your journey is unique to you. No doubt you have known someone who had cancer, maybe even the same kind of cancer you have. It may not have gone well for them, maybe it went really well for them and now they are cured. Also no doubt people are telling you about their Grandmother, Uncle, Sister, college room mate, cousin's friend who had cancer just like yours and they are fine, or they aren't. Your journey is not going to be just like theirs. For one thing if the person in question had cancer very long ago medicine has made great advances. If you have to have radiation or chemo remember it is not going to be like it was for your grandma. And most important remember you are you, you are going to make your own decisions on treatment options and everything else. Embrace that power, do this your way. For you it is absolutely the right way, don't let anyone tell you otherwise. Note of course you are going to ask people you trust what they think you should do.

Feel the feelings. They are going to be big. They are going to be overwhelming. But you can't ignore them, put them off until a convenient time perhaps but they will not go away. Give yourself time and space to feel what you feel. Also give yourself permission to feel what you are feeling. To quote the great Chrissie Hynde (if you don't know who that is, seriously stop reading this and take a deep dive on YouTube into The Pretenders right now) "If you're mad get mad".

Find your mood changers. Sooner or later you are going to be in a funk. There is no way you go through cancer and never end up giving in to negative emotions. for me its animals, nature in general, music and fail videos on YouTube, seriously those always make me laugh. The old saying that laughter is the best medicine seems to be true in my case. I was in the hospital not long ago. My husband and I watched "The Office" for seven hours strait. I went home the next day.

Find a doctor that gets your jokes. I was diagnosed on the west coast and now live in the Midwest (of the United States). I really didn't know that I was not connecting well with my first doctor until I told my second doctor the same joke and I got a laugh instead of a blank stare. Then I thought about all the other ways that I liked my new doctor better than the first one. She answers all my questions in a way I understand. She takes time to explain why she thinks I should do something. I can get an answer to any question anytime quickly. I'm not saying my first doctor was a bad doctor, I'm saying I connect better with my current doctor and that is very important. You have to trust this persons judgement on things that literally mean your life getting your jokes is a bare minimum sign of compatibility.

Don't let it always be about you. When you can, when you feel physically up to it do things for other people. There is truth to the saying that there is more happiness in giving than receiving. It is good for your soul to make a meal for a sick friend, or just cook a meal for your family if you are feeling up to it. There are two reasons this helps me stay positive. For one there are a lot of days that I really need people to do things for me. I am not really a fan of needing help, it goes against my nature. The fact that I do things for them when I am having a good day makes me feel ok with accepting help when I need it. Second it makes me feel like I still have the power to be helpful, that is powerful, don't underestimate it's ability to help you stay positive. It is a slippery slope from needing help to expecting help, doing things for other people puts the brakes on my more selfish self.

Let people help you. If you believe there is more happiness in giving than receiving why would you rob the people you love of a chance to be happy? The people who love you will look for ways to help you, they will offer what they think they are capable of. Believe them, trust their judgement and accept their help. I'm not going to lie, this is a real struggle for me. I am a very independent person. I don't like needing help with anything. I work on this one all the time.

Be grateful and watch your manners. Lets take these one at a time. First manners. I taught my children that manners matter. I think they do. By now we have all seen the so called "Karens" on the internet displaying a total lack of manners of any kind. They can be funny clips. Here is the thing about having cancer you are going to deal with the same people over and over. I have been going to the same clinic now for 5 years. Many of the same people work there as the first day I walked in the door. I make a point of saying please and thank you and remembering peoples names if I can. (Usually I can't). I never want to be the patient that when the nurse sees she is going to have to give me chemo they cringe. And it has always mattered to me to be a decent human being. And there are advantages. Lets say you end up in the ER and your nurse has been there 10 out of the 12 hours of their shift and they have been yelled at, cursed at you name it and here you come along and they do what ever their job is for you and you say thank you. You are now their favorite patient of the day. They are going to take good care of their favorite patient of the day!

Learn how your medical facility works. For example at mine the first thing you do is get blood work done in the lab at first I just thought it went in the order you came. Sometimes I would get annoyed when people who came in after me were called first. Then I found out that some people have ports, others don't and different people do those blood draws so the people who were called before me were in a different line. Also remember that medicine is not really a first come first served situation. Quite often it is a "who needs the most urgent care" situation. For example I recently went to get my normal chemo treatment. Normally it takes about an hour and a half once I get in my chair. This time it took 3 hours. Another patient had a life threatening situation going on. It was the right thing to take care of that person and ignore me until she was stable and in this case on her way to the hospital to receive more care. I was aware of what was happening because it was happening in the room I was in. But what if I was in the waiting room waiting my turn to come back to the treatment pods? I could have lost my patience and made a jerk of myself over a patients literal life being saved by quick thinking professionals. That would not have been any good for my general mental health. So I try to be patient, weather I am in the ER or at a regular visit. I try to remember that I have been and may again be the patient that needs extra attention that day. Remember Manners Matter.

Now about gratitude. Gratitude is a powerful way to be a positive person. If you are a religious person look into what your religion teaches about gratitude. If not then look into the many books written by psychologist about the power of gratitude. Here are some things that gratitude does for me. Taking time to say the words "thank you" reminds me that someone had done something entirely for my benefit. How cool is that? Why wouldn't you want to take a second to acknowledge that? Also it reminds me they didn't have to do that. It reminds me that people are good and kind and do things for each other because they want to . That is a very positive thought. It also makes me feel less like a burden to the people that do the most for me. It is easy to get lazy and not thank the people you live with for the things they do every day. I try hard to say thank you for every glass of water, ever time a pill is fetched, every meal that is cooked. Some days my gratitude is honestly the only thing I have to offer my family for the many things they do for me I try to give it freely. At the end of the day when I tell them goodnight I tell them I love them and tell them thank you for all they did for me.

The other day a nurse told me that one of her favorite patients once told her that "Not every day is a good day but there is good in every day, find it". It is maybe my new favorite quote. I try to be grateful for as many things as I can. I happen to be a person who believes in prayer. At the end of each day in my prayer I say thank you for the things I am grateful for that day. I find myself looking for things to include on this list during the day. I have read that some therapist recommend writing down maybe three things you are grateful for at the end of each day. I think if you are not inclined to pray this would accomplish the same thing. In either case you are making yourself focus on positive things that you are grateful for. This is a great way to keep from thinking about more negative, dark things.

I want to conclude this by wishing you success on whatever journey you are on. Let's face it cancer is not the only downer in the world.