Coping with Terminal Cancer
On February 21st, 2014, Tracy DeBarmore Dorame learned she has terminal cancer: grade 4 glioblastoma. According to the American Association of Neurological Surgeons, glioblastoma “is a devastating brain cancer that typically results in death in the first 15 months after diagnosis.”
16 months after this tragic diagnosis, Tracy’s still fighting. Even though she’s outlived her initial prognosis, she and her family are very aware that she has terminal cancer. Earlier this month, Tracy’s community held an event where family, friends, and clients could celebrate her life and tell her goodbye.
Tracy’s younger brother, Nick, has been instrumental in helping her organize events, raise money on GiveForward, and get her affairs in order since her diagnosis. Nick could teach a class about how to support someone with a terminal diagnosis.
This week, Nick shared 6 tips to help other communities coping with terminal illnesses.
6 Ways to Cope with Terminal Cancer
By: Nick DeBarmore
As a fifty-year-old man, I like to think I have experienced a wide variety of emotions throughout my life. After all, I have lost friends and loved ones, gotten married, raised children and everything else in between. Yet, when my only sister was diagnosed with brain cancer in February of 2014, I felt completely unprepared. Those previous experiences provided nothing tangible that would help me cope with the reality that my sister was going to die from a cancer often referred to as “The Terminator”.
Below is a list of six ways to cope with a terminal diagnosis learned by dealing with my sister’s cancer over the last sixteen months.
1. Don’t suddenly start treating them differently. Your love one is sick and dying, but they don’t want to be reminded of it. When you start being quieter around them all of a sudden, or talking about them with others as if they aren’t in the room, they will immediately go to that dark place where there is nothing but sadness. They will assume you are talking about their cancer, even if you are not. Try your best to treat them the day after their diagnosis, and every day after that, as you did they day before you learned they had a terminal illness.
2. Prepare for what the future will hold. Make sure all affairs are in order. If there is a will, make sure it is updated and reads exactly as your loved one wants it to read. If there is no will, make time to have one drawn up as quickly as possible. Regardless of the amount of time the doctors say your loved one has left, that can and will change many times. Prepare an advanced directive so that your loved one’s wishes will be honored by all when the time comes. This is not the time for family to argue over when to withhold treatment. As hard as it might be, discuss plans for the final arrangements. If you put it off, it may be too late. You may find yourself trying to plan a funeral your loved one didn’t want or picking out a casket when your loved one wanted to be cremated.
3. Enjoy the time you have left with your loved one. When it comes to terminal illnesses, each one is different. No doctor can tell you exactly when your loved one will die. There will be the initial diagnosis and you may think you have a long time to spend with your loved one and put things off only to find them suddenly gone. My sister was told she would likely live less than a year. When she was accepted into a trial for a new vaccine, we had hope she would be around for years since the trial had been going so well for others. The trial didn’t go well for her, in fact nothing but multiple surgeries provided any extension of life. We found ourselves living MRI to MRI. Now with no suitable treatments remaining, she has a couple more months at best. Time would have been much better spent had we acted like there were only a couple months left the entire time.
4. Learn about the illness and how it progresses. Knowing what to expect does make things easier. Easier for you and easier for your loved one. If your loved one has an illness that is fairly predictable in its behavior, make sure you talk to the doctors and let them explain the expected progression of the disease. This will allow you to be prepared for the changes and respond appropriately rather than with shock or surprise. In my sister’s case, the doctors let us know that due to the location of the current tumor that as it grew, she would lose the ability to control the right side of her body. At this point, she was already partially blind in her right eye. This preparation was invaluable when one day she woke up and couldn’t move her right hand or arm. Instead of being terrified, we all knew, including my sister, that this was just the tumor growing and not some unknown other problem.
5. Talk to family and friends and have a plan. Everyone will handle the news differently. Some may step up and offer to help while others may retreat in fear or denial. Keep in touch with each other to see how others are dealing with their grief. There will be a need for a plan as there will be many things to do. No one person will be capable of doing everything. In my case, I am methodical in my ways and have a tendency to bury my emotions. Handling the finances, insurance, medical bills and getting the affairs of the estate in order came naturally to me. For others, it was easier to handle some of the more day-to-day needs of my sister or being there for her emotionally. Things I couldn’t do because of proximity and lack of ability.
6. It will be difficult and that’s okay. You and your loved one will be dealing with cancer and the thought of death just about every day. There will be some good days where you may be lucky enough to be too busy or having such an enjoyable time that for a brief moment, the illness is not the main focus. Enjoy those days, as they will be few and far between. This is not supposed to be easy so don’t beat yourself up when you break down and cry, or feel like you just can’t take it any longer. But no matter how difficult it may be for you, remember it is your loved one that is going to die. Try to imagine how difficult it is for them. They will be on an emotional roller coaster. As the disease progresses, they may lose the ability to deal with these emotions in a way that seems rational. This is when the ability to just listen will be most important. Don’t try to fix it. You can’t. They are broken in ways that you will never be able to imagine and nothing we do is going to change that. But if you just listen, it helps them feel like what they do and say still matters. It gives them that touch of control over their lives that seems to make a huge difference. We are all faced with choices in our lives and regardless if we make good choices or poor choices, they are our choices. What seems to be the hardest for my sister is the loss of choice. When there are no choices that will make the illness go away, there is no hope. In the absence of hope, there is only despair. Listening helps them forget that they have no choice.
To follow Tracy’s story and read more of Nick’s reflections, please visit Tracy DeBarmore Dorame’s Cancer Fund.