There really are no easy decisions where cancer is concerned. It's usually an exercise in choosing between a tumor and a hard place. Some people find it is easier for them to just listen to the doctor and follow the guidance to a T, others will spend gruelling hours doing their own research and soul searching the right decision for them. One of the comments we frequently hear in our support group is that- there are no right or wrong answers, just what is right or wrong for you.
When I was a little girl, I would agonize over decisions. I had the toughest time with "what do you want". My gut told me one thing, but my brain would try to rationalize future outcomes and possibilities. My mom would sit me down and have me make a list. From which sport should I play, to which classes should I take in college, to what treatment should I do for breast cancer, she just would ask- have you made your list yet? A list was a simple way to visualize the thoughts that swirled around my head and wrangled them into a tangible, quantifiable form. Usually the answer was right there and the list gave me the confidence and "the data" I needed to make my choice.
Living with LFS will present many tough decisions. Often we have to choose between several less than optimal options. We talked a bit about this in the blog The Shark Closest to the Boat. From the time we have to consider genetic testing(will this affect my insurance, my job, how will I tell my family, what if I am positive) to trying to find the best screening(I want screening but insurance won't cover it, my doc says it's overkill, I don't know if I can handle the stress of all those tests) to how do I live best to prevent or fight cancer, there is a lot to consider.
Decisions are a lot like flow charts, big complicated webs with lots of factors. I had a friend once tell me they set rules before their daughter started treatment. When it came time to make some really really tough decisions, the rules they set out gave them the framework to make the hard choices, impossible choices. The "rules" can be individual, or family based, as simple or complex as you need. Sometimes it's as simples as- I do not want to be in pain.
Some things to think about are:
What are your priorities? Is it quantity of life or quality of life? What are you doing it for? Who are you doing it for?
What are your goals? Big picture, what are you shooting for cure, control, or comfort?
What are the Options? There is always a choice, sometimes it's an awful one. Sometimes you are choosing between a tumor and a tough place. Sometimes the choice is to do nothing. Sometimes the choice is to let someone else guide the decision.
What is the Benefit versus the Risk? Write it out if that helps you visualize it, every thing you can think of from fear of dying to wanting to travel to losing hair or the financial costs. There are times when your mind comes back to one or two of the items and they will weigh on you. Pay attention to that.
What information do you need? Do you need to hear from the specialist in the field? Or is a valued friend's opinion most important? Is it a balance of them all? Realize that it's easier to give an opinion on someone else's decision than our own. Advice is just that. If you ask for it, listen to it- take away what you need and leave the rest.
Remember a few things during the process:
Breathe. We need oxygen, breathing centers us and gives us a moment to think.
Take your time. It feels really really urgent. Sometimes it is, but it is important to make the right decision for you than to rush into something you will regret.
You can CHANGE your mind. You can stop treatment if the side effects are horrible, people do it all the time. You can start treatment later if you decide that it is right for you. As new information develops, it might affect your decision. It's ok to change your mind.
Get a Second Opinion. Or a third. Or a fourth opinion. Talk to whoever you need to that can give you information or confidence you need to make the tough calls. Sometimes a doctor or a specialist can explain the information in a way that makes more sense to you. Sometimes all the doctors say the same thing. Sometimes by hearing a different opinion, you realize what you need to do.
Trust Your Gut. Your intuition can be a good tie breaker. You know you. You know what you can live with. It doesn't matter what someone else does if that would make you miserable.
Make Peace with It. Once you have made your decision, make peace with it. Should have, could have, would haves do not belong in the future and that is where you are headed. Leave them in the past. You are in the now. You can learn from experiences and apply it, but know you made the best decision you could at the time with the information available to you.
If all of this is truly overwhelming(how could it NOT be) there is an entire field of psychology now dedicated to oncology. The field of psycho-oncology has trained therapists who can help address the special psychological, social and spiritual needs that affect cancer patients, their family and survival. To find out more about this field or to find a resource near you, click HERE. The American Psychosocial Oncology Society also offers a help-line- if you or someone you love needs assistance finding psychosocial support for cancer needs in your area, they can help:
APOS’ Toll-Free HELPLINE - 1-866-276-7443 (1-866-APOS-4-HELP)