Are You a Fellow Survivor?

SOME HELPFUL TIPS...

Don't believe everything you read on the internet about your diagnosis and prognosis. Remember that statistics drawn from studies are based on large groups of people, and the results are reported "in aggregate" meaning there is a lot of variance between one person and another in terms of age, health, environment and other unknown factors.  You are one person and your outcome may be very different from everyone else.  No one can say for sure but you may do much better than what is predicted by those outcome studies.   

 

No one's cancer journey is the same as another person.  (When I was diagnosed with Stage IV Squamous cell carcinoma base of tongue in 2007, my chance of a 5-year survival, according to the latest research at the time, was very low (around 23%).  That was 12 years ago and there is still no recurrence.  Ironically, I was diagnosed with totally unrelated advanced lung cancer in 2018.  Do I spend a lot of time contemplating the most recent lung cancer survival rates (2 years, maybe more since I am ALK+)?    Not really.  The stats are depressing, do not grant me any more time or greater quality of life and frankly I am not sure if they are really predictive for me at all.  

 

Avoid making major decisions right away.  There will inevitably be a lot of decisions to make but do not make any major financial decisions right away.  Do keep your medical financial records as organized as you can for now and wait a few months to sort through more complicated decisions.   

 

Give yourself time to grieve.  You may need to grieve the loss of your health, your anticipated future and/or your identity and role. For example, you may have been seen as the healthiest sibling in your family, and now you are the "sick" one.  It was very difficult for me to accept being perceived as a patient instead of as a healthcare provider.  Grief and its resolution can be complicated, particularly when there is a chronic health condition.  There may be moments of denial, anger, sadness, anxiety and even depression.  You may long for the "good old days" when you were able to take your health for granted and could make plans for the future. 

 

In reality, it is never the situation, but your perception of the situation - the meaning of it - that matters.  It might be helpful to start with asking yourself, "What does this mean to me - what is it exactly that I have lost?" This will lead to you putting a name to a few things.   Once you start putting a name to things, it is the first step toward them becoming more manageable.  

 

Surround yourself with love and adequate support.  In my opinion, adequate support is the key to resilience and successfully coping with a cancer diagnosis.  Seek out others who will listen and find support everywhere you can - journaling, close family, friends, a support group and/or an individual counselor.  Let others help you when they offer to help because the opportunity to do something for you also helps and encourages them.  Delegate as much as possible the small tasks such as meals, rides, or errands.   Identify mentors who have had similar cancer experiences and spend time with them.   For now, avoid spending time with people who drain you or who need you to take care of them.  Living with cancer is physically and mentally exhausting and you need to conserve energy.  Make choices that enhance your quality of life.  

 

Ask your doctor about the latest research and outcomes and whether you might be a candidate for a clinical trial.  This is your one and only life.  If your doctor is not a specialist for your diagnosis, find one.  Regardless, never hesitate to get a second opinion.     

Identify and schedule in meaningful work.  There is always something you can be doing.  Invisible jobs are no less meaningful.  Volunteer, write cards of encouragement to friends.

Share your story with others.  Strive to be candid and honest about how you are feeling while remaining sensitive to their own story.  You will be surprised how opening up and sharing your experiences will encourage others to share their own struggles with you and this will be very helpful to them. Do not allow yourself to self-isolate, which will be a struggle, because you will instinctively want to hide.​

Eventually, it was helpful to me to ask myself the following questions (but not right away):

  •  What do I want to leave here after I am gone? There is always something left. Remembrances and tokens - maybe painful to your family, or helpful, or both.  

  •  What do I want to be remembered for?  

  • What do I want others to remember or know about coping with their own loss and suffering that I might be equipped to share with them right now?

Remember that you are not alone. You are on a new journey.  An uncharted path that will take you to new and valuable insights.  The first few days, weeks or maybe even months after being told that you have cancer can be the most difficult, frightening and overwhelming. During this time, you will not be thinking the clearest but it get easier.