So, someone you love has been diagnosed with terminal cancer. What now?
When my father was diagnosed with terminal lung cancer in 2004, it was, of course, a shock to us all. Although he was 74 at the time of his diagnosis, he seemed healthy, hale and hearty, and none of us expected to hear that he had six months to a year to live.
Although I'd spent the better part of a decade half a world away, I moved back in at my folks' request to be my dad's primary caregiver, and in the roller-coaster of the next few months, we all laughed, cried, and learned a lot of lessons. I'd like to share a few of them with you.
Ask for the bad news first, and ask for it straight, no chaser. Your doctor will take his or her cues from you. If you ask him, he will tell you. Ask him. You need to hear it. You need to be armed with the facts. Knowing the prognosis will determine the quality of the time you and your loved ones have together.
Face it. Trust me. You don't have a lot of time, and while there's that one in a million case where you beat the cancer, no one beats death. Facing it allows you to make important decisions on how you, as a family, want to spend the time you have left together, however much time that might be.
Allow yourself to freak out. Freak out as a family, if possible. Try to understand that as devastating as a diagnosis of stage four inoperable cancer is, it's also an opportunity to cut the bullshit. To say the things you've been meaning to say, to forgive and be forgiven, to love and care for one another. This is precisely what family and friends are for.
Be Open. Be honest. If you're having trouble coping, talk about it. Talk to your priest, pastor, or Rabbi. Talk to those sharing this terrifying journey with you. Talk to the one who is dying. We are all afraid. Say what you are thinking and share what you are feeling, and you will discover that we are all thinking and feeling much the same way.
Discuss and debate treatment options openly. Not only should you educate yourself and each other and help each other ask all relevant and pertinent questions, but be critical with the answers. Consider seriously whether so-called palliative treatments will really have the desired effects.
Chemotherapy and radiation treatment may or may not extend the life of your loved one. Even if such treatments do extend life minimally, it is worth asking and discussing openly how they will impact the quality of life.
It is quality of life, not quantity that matters. We seem to have been conditioned to judge life by longevity, but in the case of a prognosis of six months to a year, like my father had, the question becomes how best to spend the time we have together.
Be here now. Let go of the idea that hope is in our future together. Hope is here and now, and it's measured not in the future time we have together, but the present moment we share. In ordinary acts of courage. In striving to go deeper into the moment, to share more of ourselves more openly, more honestly, more fearlessly than we have up to now.
Bury the hatchet. If you have issues you've been carrying around, now's the time to forgive and forget. All families have troubles, and personalities clash. If you need to get something off your chest, do it, but do it with a generous spirit. Anything you do out of spite will come back to haunt you.
Simple things mean a lot. My sister came out from California to visit for a week when she found out about dad. Before she left, she gave him a worry stone--no bigger than a silver dollar--and told him, whenever he was afraid or felt alone, take hold of the stone and she'd be there with him in spirit. And that was an incredible comfort to him to his last days.
Accept that life is going on around you. The world will not stop turning no matter how terrible things get. Your kids still need to get to school every morning. There are weddings and funerals and graduations and projects due. Appreciate what time people have to share with you, and understand their obligations.
Live. Continue to live. Encourage your loved ones to do the same. Including your loved one with cancer. Take time if you are a caregiver for yourself. Go to the gym, jog, take a drive, go to lunch with your friends, see a movie.
When in doubt, always go deeper into life. Don't deny or set to the side the extraordinary thing you are now a part of. Share it openly with the loved ones who are taking this journey with you.
Remember: people with terminal cancer are under enormous physical and emotional pressure... They will not always be pleasant, they may sometimes be cruel. On the one hand, as a family member, friend, or caregiver, you have to constantly remind yourself of the extraordinary difficulties they are facing. If you feel you are going to either implode or explode, reach out to a family member, friend, pastor, or caregiver immediately.
...but so are their caregivers. On the other, you have a right to demand that everyone, including your loved one with cancer, treat each other with dignity and respect. You have every right to ask that your loved one with cancer not verbally abuse or mistreat you. If they do, discuss it with them, but do so, again, with generosity and love.
You will have conflicting feelings. That's OK. There's a lot going on, emotionally, especially towards the end. You may find yourself thinking about your life without your loved one with cancer, and this might feel wrong. But it's necessary. You may feel relieved when death comes, maybe even elated. Later you may feel guilty for having been happy it's over. But these are normal feelings. If you need help coping, family, friends, pastors, and social workers can all be of help. Seek them out.
Use your faith as a light to guide you, not as a shield to hide behind. Whatever your belief system, it should serve you now as a way to experience the time you have together as deeply, openly, honestly, and lovingly as possible.
Religion can sometimes be a form of escape. And that's OK. But if it hinders open and honest communication about what you are going through, it's not helping you or your loved ones.
My family's pastor, a friend of our family whom I have known practically all my life, gave my mother this excellent advice: don't pray for your husband to live. Pray for God's will to be done.
The miracle is the time we have together in this life, however long it ends up being.
Strange as it may seem, as terrible as a prognosis of six months to a year is, it could be worse. Here's what I mean. When someone dies suddenly, without warning, you don't get to have one last trip to the ballpark with them. You don't get to sit and hold their hand and watch Jeopardy! and shout out the answers together. You don't get to tell them you love them, to hold them, to hear the stories they have to tell, to be with them through a momentous passage. To laugh and joke, weep, argue and fuss. To live.
Always remember: this moment is a gift.