Now What?

Getting the Best Care - June 30, 2015

I have a very distinct memory from when I was 10 years old. When I came home from school one day my mother told me some news, our family friend's son Wade had been diagnosed with brain cancer. My reaction was nonchalant which was typical for a young child, I didn't understand the gravity of the situation. My mother said to me "Hope, their lives have changed forever. Their life will always be marked by how it was before Wade had cancer and how it is now that Wade has cancer." It was one of the first times in my young life that I became aware of some of the difficulties of life.  Twenty-eight years later when a doctor told me that my husband had gastric cancer I fully understood the reality of my mother's words.  From the moment that I heard the word cancer, life changed forever.

When you receive the news of a diagnosis of a major medical condition of any kind for most people it is like experiencing an emotional sucker punch. This is particularly true for conditions that may be life threatening or will drastically change the patient's daily life experiences. Even though we all know that human life is fragile most of us live in a state of denial about it. When we are suddenly faced with the reality of a diagnosis of a major medical condition for ourselves or a loved one it shakes us to our core.  And of course it is during the time that you are adjusting to this upsetting and shocking news that you have to make critical decisions about treatment options.  In many cases you have to digest the information quickly and make a choice for how to proceed with treatment.

People cope with the stresses of life differently. Everyone has different strategies for dealing with a crisis. Some people hide and pretend the problem isn't happening, some people take charge and cope by educating themselves, others cope by self medicating or other destructive actions.  There is not a universal reaction to a health crisis but many people experience a feeling of being afraid and at least temporarily paralyzed by fear. It's natural.

If you or someone you know has recently received a diagnosis of a major health condition, what can you do to effectively manage this challenging time? Every situation is different but having been there myself and assisted many friends and clients through this challenging time, there are few things that I have learned that can be helpful.

First, it is very important that you create a system for recording and organizing information. You will receive so much new information and it is difficult for anyone to keep it all straight.  I recommend you buy a simple notebook and write down everything in one central place. You may want to use an app on your smart phone or tablet or spreadsheets or other technology for recording and organizing things. It doesn't really matter how you do it, what does matter is that you are recording everything. People who are under a lot of stress commonly have memory loss issues. You may find you remember things at first but over time some of those early details can fade. If you have taken good notes you will find it easier to have others help you.  It is simpler to give them notes rather than having to remember and repeat everything to them.

It is also important to research as much as you can about your condition and treatment options. There are many resources, particularly through non-profit organizations with a mission to help educate and support patients with the disease or condition. Medical journals and other peer reviewed research can provide valuable information to help you fully understand the condition as well as be fully informed of all of the latest treatment options. If you are the type of person who typically copes with a crisis by educating yourself and researching to feel empowered this is great. The problem is for many people this is too mentally and emotionally taxing while also coping with the stress of the news. Also some people aren't particularly skilled at research or understanding complex medical information. If either is the case for you, I strongly recommend you find someone in your life who is good at this type of work to help you. Often there is a close friend or family member who enjoys doing this and is skilled at research. Ask them to help you with research. In my experience people are almost always glad to help with this, they want to help you and it makes them feel good to help. If you don't have someone in your life willing or able to help you with this, you may want to hire a medical advocate to help you with research.

In the vast majority of situations it is also very important to get a second opinion for your treatment plan. There are sometimes circumstances where this is not advisable, such as when getting the second opinion would delay starting treatment and that could have a negative impact on your outcome, or other rare situations.  Most of the time, though, getting a second opinion is a very helpful and important step in getting the best treatment. In many cases the recommendation from the second opinion may offer you a slightly different treatment option that works better for the patient. You may also get a second opinion that confirms everything recommended by the first doctor; it can be comforting to have confirmation that the treatment plan you are choosing is recommended by two different doctors.

Finally, the most important thing to do in this situation is to be gentle with yourself. Realize that the news of a diagnosis of a major health issue or an injury or accident means that your life will be different. It does not mean that this event will necessarily define you but like any major life event it does change you and change is often uncomfortable. Do what you can to accept that you may be emotional or reactive. Stress impacts everyone so you may experience some problems coping with it. The same is true for caretakers and family or close friends. If this happens you need to cut yourself some slack and accept that emotional eruptions or other issues will sometimes happen.

Everyone reacts to challenging news differently. If you can focus on gathering as much information as possible while also caring for yourself physically, mentally, and emotionally and taking things one step at a time, this challenging phase will soon be in the past.