Its How You Get Up Again

After cancer hits you, you cope and move on. But I think the most important part is how you cope. Many people are familiar with Scott Hamilton, the Olympic medal winning figure skater. But I am not sure that everyone knows about his cancer diagnoses. In addition to testicular cancer in 1989, he has also been diagnoses with brain tumors, several times. And he has also developed that awesome resource ChemoCare which provides a huge amount of information on chemotherapy regimens, including the all time favorite, side effects. His last diagnosis was last spring.

He spoke about this recently with People Magazine, that ever popular medical reference. I found the video very interesting and provided some thought provoking insights. Watch it all the way to the end (its less than 3 minutes), and then think for a bit.

A cancer diagnosis is a big fall in your life. Actually its not a fall, its more like it threw you down three flights of stairs. But you have to regroup and go on with your life.  You still need to go to the grocery store, have surgery, drive your children to school, do the laundry, deal with surgical drains, mop the kitchen floor, dust the living room, make the beds, hang out with friends, and go to more damn doctor appointments that you ever thought possible. And deal with this huge emotional wave of medical crap.

Scott Hamilton has had to deal with this four times now and he came up with this advice.

Its not what happens when you fall its how you handle it. The remember to smile like Kristi Yamaguchi as you do it.

Managing Emotions

This week I read two different blog posts from other women dealing with breast cancer - Nancy wrote about cancer patients being told to be positive and Florence wrote about the crappy and the happy we deal with in our lives. After reading them, I commented on both. And then started thinking (sorry!).

First of all we have the issue of cancer patients being told to be positive. Honestly, whoever came up with this was an idiot. There is something to be said for not succumbing to depression while dealing with a medical disaster. If you are depressed, you aren't going to take your meds, go to the doctor, get emotional support. But if you are trying to stay positive you will probably handle it better. However, don't tell me to be positive and smile.... Grrr....

Then we have the issue of coping with the crappy and the happy. Everyone gets a load of crappy in their life and a load of happy. But its how we handle it all. We have to learn to balance the bad with the good and look at the goals for the long haul and take enjoyment out of what we have.

Even without adding in a medical roller coaster along with everything else, it can be tough to maintain one's sanity and be able to smile once in a while. Its that medical crap that can screw everything up. All of a sudden you can't work, you have problems getting around and paying your bills. And you are supposed to smile? Don't tell me to be positive on top of all that. I will work on being able to keep a smile on without your help.

I think I just don't like being told what to do.

The Post Cancer Diagnosis Life

As I have said before, if you haven't walked the walk, you can't talk the talk. This is a pet peeve of mine.

Once you are diagnosed with cancer and thus had your life turned upside down and inside out at the same time, it takes time to return to a balance, that so called 'new normal' you hear about (but never really attain or understand). You may be the same but you aren't. You have new insights into life after going through those experiences. You have 'walked the walk' and are now a member of a new group - cancer people.

Cancer people are the ones who have been the perils of diagnosis, chemotherapy, radiation, hope and despair. Its a group of people who never thought they would be in it but are doing okay now that they are there. They are happy they are still alive to participate. They have more emotional ups and downs than anyone else. No one else can understand what life is like for them.

There is another group of well meaning people out there who try to help cancer people but since they haven't 'walked the walk', they can't 'talk the talk' no matter how much they try. These include care givers, providers, and more. Unless an oncologist or oncological nurse has had cancer, they never quite get it. Unless a therapist has had cancer, they never quite get it. Never mind insurance companies who never get anything and just like the word 'no'. (But that's a different blog post.) Or drug development people who really do n't get it.

We cancer people accept their help but realize there may be holes in what they can provide. They do their best but it will never quite be all encompassing. However it is rare that a cancer person's life was not derailed enough so they want and are still able to provide support and care that would fill all the gaps.

As a cancer person, do you really want to open up to your career path and reveal your medical history and face the societal backlash (where people think you are too 'sick' to be a full employee) in order to fully fill the role of a cancer support person? (Again another blog post.)

When cancer people meet, the conversation tone subtly changes. Because we have 'walked the walk' and are now together.

Quality of Life

I don't know why this took a research study to figure it out. One of the key factors in determining health outcome is health related quality of life for cancer people.  A recent research paper was published which analyzed quality of life factors in multiple cancer trials.

"Of the 30 trials included in this analysis, 3 trials assessed a total of 321 breast cancer patients of any type or stage. After accounting for multiple variables, physical functioning, emotional functioning, nausea and vomiting, and global health status were all predictive for survival among breast cancer patients.

Physical functioning, as assessed by the questionnaire, includes the ability to perform various degrees of effort, such as walking or carrying heavy loads, as well as basic functions such as eating, dressing and washing." 

At my second cancer diagnosis, physical functioning was not an issue. Now, its a different story, walking any distance or carrying things is much more difficult.

"Emotional functioning includes attributes of depression and mental well-being, such as difficulty sleeping and often feeling worried, tensed or irritable."

After one cancer diagnosis, I knew better and made sure I took care of this part. 

"Often feeling nauseous and vomiting were also found to be predictive of worse cancer outcome."

Nausea was my 'frenemy' during chemo. I spent more time feeling nauseous (but that didn't mean I lost any weight). And I'm still here so the jury is still out.

"Global health status includes attributes of both functional and emotional well-being, as well as the effect of disease or treatments on family life, social activities and financial situation."

Family and social stuff took a back seat during treatment because they were less important to me. I did what I could but my focus was on getting through treatment. It was a bummer that I got laid off two weeks before my diagnosis so there was a financial issue but I did get a part time job during treatment that helped.

Back to the emotional part. At my second cancer diagnosis, I knew what it was emotionally like to go through a cancer diagnosis, not cope with it, ignore it, and waste a lot of time on it. I also knew because of how I didn't deal with it, that it took a long time for me to learn to accept it. 

But at my second cancer diagnosis, this was one area where it I was in control and I could make a difference. So I did. 

One of the most important things in my life to this day is my quality of life. This has lots of components but (in the words of Donald Trump) it is HUGE! Why? Because it is in my control. 

The components include everything from where I live, what I do, who and what I include (and exclude) in my life, how I handle my treatments, what doctors I see, what I do to make me feel better. I make a point of getting rid of any one or anything that is toxic in my life. Stressful situations are avoided if possible. Making sure I do anything and everything I can to make me feel better emotionally, which is tied very closely to how I feel physically.

So, my advice is that if you feel like crap or are facing any kind of crappy diagnosis, focus on your quality of life.

So What Would You Do Differently?

We cannot afford to beat ourselves up for 'woulda, shoulda, coulda' moments. The past is the past. It is a different world than now. Everything that happened in the past is no one's fault, especially your own, But we can make changes based on what happened before so that it becomes better in the future. So if you don't think you handled your cancer (insert other nasty disease name here) diagnosis well, you can make sure you do it better if there is a next time.

I already had a 'do-over'. I screwed up my first cancer diagnosis and did it better the second time around. But I still would do some things differently if there is a next time.

My first cancer diagnosis I did everything wrong. I didn't seek additional emotional support. I didn't talk about it. I couldn't didn't research the crap out of it. (To be fair, it was 1981, there was no internet, and the few times I was near a medical book, I didn't really understand anything I read.) And I was miserable about my cancer for years.

At my second cancer diagnosis, I said I am in control. I joined a support group before my second surgery. I talked about it. I blog about it. I researched it. I put myself in control of my medical crap. I was not going to let cancer suck any more life out of me. I took some time to figure out how I was going to deal with it.

But have I learned anything that would help me with another cancer diagnosis? I think so.

I do need to say that since my second cancer diagnosis, I have had a couple of other not so good diagnoses. Nothing that will kill me but all will work to try to make me miserable for the rest of my life - degenerating disks, rheumatoid arthritis, and fibromyalgia. I think those count as 'life changing'.

How did I handle them? Pretty well. I researched them. I talk/blog about them. I did work on some emotional support. I didn't let them suck any enjoyment out of my life.

So if another cancer decided to try to suck some fun out of my life? I think I would do the following:

• research it
• talk/blog about it
• find emotional support as I feel I need it
• plan a vacation to go get grounded and develop a plan to take care of my sanity during treatment.

I think that last one is something I would do differently. I would take a few days/weeks to focus myself on a plan for coping. Then spend a few days at the beach to 'rest up' for treatment. Going to the beach is always very important. And I am always happy at the beach.

Resentment

Among all the other emotions for a cancer patient is resentment. First there is the resentment of why me? But the biggest problem is the resentment of others.

Why did X turn their back on me when I was diagnosed with cancer after all our years of friendship? This one is very common. I have lost more friends at the word cancer than I care to count. I hope they think they are better off without me and I certainly know I am better off without them. But it took a long time to get that way. There are numerous iterations of this passed around among cancer patients. We all have this happen to us.

But the bigger resentment comes when key family members, who we have relied on our whole lives for support, hide information about our diagnoses from us. Yes this happens.

I met a woman about five years ago. She was diagnosed with thyroid cancer when she was 18. Her parents never told her that she was diagnosed with cancer. As a result she never had any follow up treatment after cancer and experienced numerous recurrences and their treatments for decades. Her parents were scared of the word cancer and didn't want to admit it had happened to their family.

I know another woman who was diagnosed at age 20 with cancer. Her mother never told her. Her sister never told her. Her best friend never told her. Can you believe it? And her mother since passed away before she had a chance to come to grips with this. Her friends and family did not feel she was emotionally able to cope with her diagnosis.

I know someone else who's family were with her through her cancer diagnosis but never discussed it. For decades. It was sort of put to the side and was and is the elephant in the room that is never spoken of. How does that sound? How do you face your family when they do not choose to discuss your health for decades?

This kind of resentment festers and lingers. Its a huge emotional load for a cancer patient to deal with along side of life long health issues, side effects, and emotional drain.