Living with Oligo

Emotional Journey

Dealing with the Diagnosis

For many of us, the shock of the oligodendroglioma diagnosis never completely goes away. But in the first weeks and months, it is common to be consumed by the fear of cancer and fear of the unknown. Often, things happen really fast and we are in no position to make considered decisions. Surgery can follow the discovery of the tumor by just days or weeks.

Let’s be honest, ‘brain cancer’ seems about as bad and unexpected as it gets. Of course, we know nothing about it and finding meaningful, helpful information on oligodendroglioma is difficult. It is also likely that your local or regional hospital has limited experience with oligodendroglioma (see Getting the Best Medical Treatment).

Here are two things to keep in mind as you are dealing with this diagnosis. First, it is likely that you or your loved one is going to OK in the near-term after surgery/treatment. The world is getting harder, but it is not ending. The second thing is that there is time for more effective new treatments to be developed to help you/your loved one.

And know this: Time will help. Be patient with yourself and your family. Your life may not feel like it did before, but you can regain your capacity for joy and even peace again. Personal anecdote: After my second son was diagnosed, I woke up every morning—for 3 years—asking myself if this had really happened. I don’t do that anymore.

Now What? Post Treatment Adjustments

For many, the physical recovery from the initial surgery is relatively short, often just a few months. So physically we or our loved one may be ready to resume a ‘normal life,’ but emotionally things may not be so clear cut.

The reality is that none of us expect this type of thing to happen to us and there is no way to be prepared to deal with all of this at beginning. Many of us struggle to cope with the fact that some of our most important assumptions about life have been undercut (my kids will outlive me, I will see my kids get married/have children, I can travel the globe, etc, etc, etc.). And then there is constant presence of fear for the future.

These reactions are not just normal, they are justified and to some degree unavoidable. Many of us will need some help coming to terms with the new reality. It could be seeing a therapist, adopting meditation, opening up to a few good friends, or anything else that helps you process your experience and thoughts. And be kind to yourself and your family—this is hard.

It would be wrong not to mention the recurring anxiety as MRIs approach. It can be excruciating, knowing that what the scan shows could send you back into the wilderness. Having been through 10 years of these with two children, I still get nervous. But I have found through our journey that whatever fate has thrown at us—basically everything plus the kitchen sink—we have found a way to handle. So being nervous is unavoidable, but believe that whatever the outcome of the MRI, you will be alright.

Common Reactions to an Oligo Diagnosis

Of course, we are all different in terms of how we handle a life-changing event like this. And our approach and outlook will likely evolve over time as we become more accustomed to the ‘new normal’ and more knowledgeable about the disease. As an active part of the Oligo community for the past 10 years, we have seen a range of reactions but below are some of the most common ones.

Denial: There are people who just don’t talk about it and to the extent possible, try not to think about it. Some don’t let anyone outside their immediate family know about it, for a variety of reasons. However, sharing our lives (and problems) with others is one of the surefire ways to lighten our load. Going it alone not only makes your life more difficult, but denies your friends the opportunity to help.

Unfounded optimism: Some will just assume that something will come along to save them or their loved one. Of course, we should all be optimistic, really, about everything. But I have found that my optimism is much stronger when I am working to make good things happen.

Living in Fear: For all of us, the future holds grave concerns. And we have little or no control over the course of this disease. So, being worried and even scared is not irrational. For all of us, there is fear, but somehow we need to push it into the background as best we can.

Depression: A leading neuro-surgeon told me that more than two-thirds of brain cancer patients experience depression at one time or another. At the time, I remembered being shocked, but as time went along I realized that there were times where I was probably suffering from mild depression. So, don’t be afraid to ask for help.

Proactivity: The idea that we are going to fight this disease is a natural and healthy reaction. However, the question of how to make a difference can seem daunting. Perhaps many people feel ‘what difference can one person make.’ However, for those that overcome their doubts and get involved the emotional benefits are many.

For those who are involved in Oligo Nation, we have found being proactive incredibly helpful in dealing with the tough situation we face. It allows us to be optimistic based on the progress we are making happen. It unites us with people that know and love us as they support us in this cause. And it connects us with others in the Oligo community who share our belief that, together, we can do this.

Of course, each of us has to find a way of dealing with an Oligo diagnosis. None will take us back to where we were before, but the key is finding the one that lets you live the best, most positive life today and tomorrow.