50 Things I Learned From My Dad's Cancer and Death
My dad died on February 20, 2016. He battled esophageal cancer for three years. The week after he died, I wrote this to calm the thousand little tornadoes that spun in my head. There was so much I’d learned, I didn’t want to lose it. And so I wrote.
1. Talk about cancer.
It’s not easy. But it’s what’s happening. You can’t pretend it doesn’t exist. It does. Talking about it is healthy.
2. Talk about death and dying.
This is definitely not easy. But again, it’s what’s happening. It’s very real and much more frightening if you don’t have a conversation about it. Drag it out from the shadows and talk about it.
3. “Everything will be OK in the end. If it’s not OK, it’s not the end.”
This quote is commonly attributed to John Lennon but is actually from Paulo Coelho. It’s a little morbid, but there’s such truth to it.
A few days before my dad died he told my mom everything was working out perfectly. He had shared his wants and needs with his loved ones, including very clear instructions on how to pick up where he left off with his woodworking projects — most specifically, the cabinets he was in the process of building for my kitchen. He found a place of peace in his final days.
It was OK because it was the end. The end of a long fight against cancer.
4. People will surprise you.
There will be loving hugs from those you barely know and silence from those you’ve known your entire life. There will be those who step up in ways you didn’t see coming, and there will be those who slink away in the face of illness.
Be ready to be surprised by it all.
5. You will surprise yourself.
You will find yourself doing things you never thought you’d be able to do. My dad needed a lot of help with the smallest things before he died. Things I never thought I could do, I was doing. You’ll find something deep inside of you that you never knew existed.
6. Be there for the illness, not just after death.
It’s difficult, yes, but showing up only after someone dies is like showing up at the movie theater as the final credits are rolling. You kind of miss the whole point.
7. Quiet is OK.
You will run out of things to say sitting in a hospital room day in and day out. And you get so tired you just don’t want to talk anymore. There’s no need to fill the space with sound. Sometimes we need to just be in the quiet.
8. Make friends with grief.
It’s not going anywhere anytime soon, so there’s no sense in fighting it. You might as well invite it in for a cup of tea.
9. Hold their hand.
When you’ve said what you need to say, just hold their hand. I spent hours holding my dad’s hand in the hospital bed, and up until that last day, he held mine, too. We’d never held hands so much in my life. But that was all we needed to say: “I love you” and “I am here for you.”
10. Send flowers.
Flowers are always welcome, both during the cancer and after death. I received a beautiful bouquet from a friend of mine this week and it was such a joy to come home to on an otherwise dark day. My dad enjoyed getting flowers, too. It brightened his day, brightened the space and made him feel loved.
11. Choose greeting cards wisely.
There are very few cards out there that are appropriate for someone with a terminal illness. It’s probably best not to send a card that says “Feel Better Soon” or “Sorry You’re Sick” because they aren’t going to feel better soon. And they don’t need you to remind them of that.
A simple card that says “Thinking of You” speaks volumes.
12. Stand in the face of it.
Cancer is scary shit. And so is death. But it does no good to run away from the fear. So set your feet firmly on the ground and stand in the face of it. Find the courage.
13. Create space.
You have the power to create emotional and spiritual space for yourself and for others. Resist the urge to constrict and shrink that space. Make room for love, openness and light.
14. Grief can create connection.
Your personal experience with death and cancer is unique. But it is also shared. I have connected more deeply with a few people in my life because of this experience. Know that you are not alone.
15. Take care of yourself.
It won’t be easy, and you might feel guilty doing it, but this is imperative. You need to take care of yourself so you can take care of others. If you don’t, then others will have to take care of you even more. Do whatever you need to do to keep yourself as spiritually, physically and emotionally balanced as possible.
16. Be thankful for what you do have.
Some days it can feel like you have nothing. But I promise, you have something. Be thankful for your own health. Be thankful for memories. Be thankful for the blue sky.
17. Being “strong” is overrated.
People will praise you for being strong. But having people tell you you’re strong can make you feel like a fraud. Because when no one’s around, you are the very opposite of what they are praising you for. Forget about being strong. Just be real.
18. Optimism can feel dismissive.
When my dad was first diagnosed with cancer someone told me, “It’ll get better.” I thought, “What the hell do you know?” Instead of asking me how I felt and talking with me about my dad’s cancer, she completely dismissed the severity of both my feelings and the illness.
Being optimistic might come from a good place, but it’s important to make room for the very real potential outcome of the illness.
19. There is beauty in dying.
We will all die. It is an unavoidable part of the cycle of life. Sharing this transition with another human being is an honor. The cancer may be ugly, but the experience of dying creates some beautiful moments that would otherwise not exist.
20. Make time.
We’re all busy. During the cancer and death you just make time. It’s a choice. Make the choice to spend time with your loved ones and to support those who are grieving. You will never regret spending too much time with someone who’s dying. Ever. But you might regret not spending enough time.
21. Be present.
Just be there. In mind, body and spirit.
22. It hurts.
At times the pain is so deep you think you will most certainly die of a broken heart. There is no other way to explain this type of grief. Feel it fully. It will pass. And yes, it will probably come back again. This pain means you’re human and it shows just how much love you have in your heart.
23. Grieving begins long before death.
I remember the day my dad was diagnosed like it was yesterday. I got the call. It was brief. It was cancer. My heart dropped into my stomach and I couldn’t breath. I went into shock. Then I cried. The past three years have been filled will grief.
Esophageal cancer was what my dad would eventually die from. We all knew this, and it has been a long process of grieving since day one. Now, we are in a new phase of grieving. The one that people expect you to be in. But the truth is, the grieving process began long ago.
24. Ask, “How are you today?”
I remember reading a blog post by Sheryl Sandberg after her husband died. In it, she brought up the importance of asking “How are you today” as opposed to “How are you?” It may seem insignificant, but that one word “today” gives room for someone’s feelings in the moment.
When you’re grieving, your feelings are all over the place all day long. “How are you” can be difficult to answer because you don’t know what to compare it to. “How are you today” allows room for someone to feel differently than they did yesterday.
25. Time gets really jacked up.
Yesterday feels like six days ago. An entire month becomes a blur. You don’t know what day it is and you can’t remember when you talked to so-and-so and what you had for dinner last night. Or if you even ate. Yet you will remember quite clearly what time and day your loved one died.
At the end of life, the days drag on forever. Yet, for my dad, there was the realization he didn’t have much time at all. Time becomes sort of meaningless and meaningful at the same time.
26. Appreciate them while they’re here.
It can be difficult to settle in on this simple thing amidst the chaos of cancer and dying. When your loved one is dying, remember, they are still here. Appreciate the moments when you can still hold their hand, touch their face and breathe together.
27. Some people just won’t get it.
Cancer and death brings out the best in some. And others, not so much. You will be disappointed by someone. You may even be disappointed by a whole bunch of someones. And you may be disappointed by the very people you thought were closest to you. Choose to forgive them or release them. Or both.
Sometimes you forget to breathe. It is the simplest yet hardest thing to do. When you are feeling overwhelmed, close your eyes and take three to five deep breaths. Don’t be surprised if your breathing brings tears. It’s just creating an opening for your feelings. And breathe with your loved one, too.
When nothing else, just breathe.
29. Being alone is OK.
It really is. Sometimes you just need to be alone to process your own feelings without being present for anyone else’s. Take this time. As much as you need. And make it all about you.
30. If you don’t know what to say, say just that.
Words can escape us. Especially when we are trying to comfort someone while they are sick and dying. You don’t have to know exactly what to say all the time. No one expects the perfect words. Just speak from the heart and you will be fine.
31. You might not cry when you think you should.
I didn’t cry much right after my dad died. I was more numb than anything. Apparently, this is still the “in shock” phase of grief. I thought for sure I’d be bawling all week. There’s nothing wrong with not crying, but it sure wasn’t what I expected.
32. There may be a sense of relief when it’s over.
When you’re on the cancer journey you find yourself holding on so tightly every single day. When my dad succumbed to the cancer, there was a sense of relief. Not a relief that he was gone, of course, but a relief that we didn’t have to hold onto the cancer anymore. A relief that there would be no more waiting for what’s next. A relief that he didn’t have to be in pain anymore.
33. There’s room for all your feelings.
Oh, the feelings. There are so many. You might not even be able to name everything you’re feeling. Some days you’re really sad. Other days you are angry beyond words. Some moments you’ll feel tremendously grateful. You might experience all of these feelings within the span of five minutes. Let them flow without judgment.
34. There’s room for everyone else’s feelings.
Your feelings may be exactly the same as everyone else’s. Or they may be the exact opposite. Allow room for everyone to feel what they feel when they feel it.
35. If you don’t know, ask.
It’s perfectly normal not to know what’s going on with the cancer. Symptoms can change from day to day from the cancer itself, as well as the treatments. No one expects you to understand everything about the disease and there is no way you can possibly understand exactly how your loved one is feeling, both physically and emotionally, unless you have experienced the same exact illness yourself.
So ask. And if you are uncomfortable asking, then ask if it’s OK for you to ask. Most likely, your loved one will be open to talking about it. And if they aren’t, at least you showed that you cared enough to ask.
The worst thing you can do is assume.
36. Just check in.
A simple “hello” text. A quick stop by the hospital room. An email of support. Just checking in with someone means so much. It doesn’t take much time, but it means the world to those who are sick and grieving. If you can’t be physically present send a text, a card, an email or leave a voicemail. You may not hear back, but your love is felt.
Be persistent in your support. Cancer and grief are emotionally and physically exhausting and all those check-ins provide little boosts of energy to help your loved ones get through each day.
37. There is opportunity for growth.
As painful as all of this is, you will grow from this experience. Cancer and death force change upon you. Take this as an opportunity to become a better version of yourself.
38. It’s OK to not know how to be.
No one really knows how to be around cancer and death. You do your best. You show up. You open your heart. That’s it. There’s no perfect way to be, so forget trying to be perfect.
39. The spirit is far more powerful than the physical self.
I wasn’t aware of the magnitude of my dad’s spirit until his last day of life. I sat with him all day, knowing I was no longer sitting with him. His body was there, struggling to breath and swallow, but he was no longer present. It was only in the absence of his spirit that I realized what a powerful presence he really was. I missed him already, even as I was sitting with him. When I left him that evening, for the final time, I knew he was already gone.
I take comfort in his powerful spirit now, as I know he will always be present.
40. Don’t be so polite.
Be kind, yes. But forget about being polite. There’s nothing polite about cancer. It doesn’t ask permission and tiptoe around your lives. There’s no Emily Post advice that’s going to help you get through this, so show polite the door. It’s not strong enough for cancer.
41. You are more resilient than you can imagine.
You have no idea. Every time you think, “I can’t do this anymore” you find the strength to keep on going. When you trust that you will be able to heal tomorrow, somehow that makes today’s pain much more bearable.
42. Grief can be isolating.
There are days when you will feel completely alone. Really, really alone. Even in the presence of others. Or especially in the presence of others. There is something quite isolating about grief.
Trust that others somewhere know your pain. Trust that this is just today, jut this hour, just this minute and that tomorrow you may feel a little less alone.
43. You don’t have to be “OK.”
When someone asks how you are, it’s easy to get into the habit of saying “OK.” But that word starts to become meaningless — even dishonest — in the face of grief. If you feel crappy, say you feel crappy. If you feel depressed, say you’re depressed. No one expects you to be “OK.”
44. Share yourself.
When you are left wondering what more you could possibly do or offer, just share yourself. When I held my dad’s hand in the last few days I actually felt like I was sharing my life force with him. My heart was beating, my blood moving through my veins and my breath strong. I could feel a transfer of energy.
So even on the days when you think you have nothing to share, remember that you have a beating heart and breath in your lungs.
45. Appreciate the little things.
When the big things are too daunting, shift your focus to small things you can appreciate. It may be the sun shining or a nurse’s kind smile. Look for something small and you will find it.
46. Know when to surrender.
Cancer feels like an uphill battle. You fight and fight and fight. But at a certain point, the fight has to end to make room for peace. Know when to surrender for your loved one. It will make the transition easier for everyone.
47. There is no right or wrong way to grieve.
Grief comes in many forms. It can make you irritable. Or drown you in tears. It can come in a huge wave or little pin pricks. It might go into hiding. It might make you restless. Or infuriated. There’s no one single emotion you should or shouldn’t feel, and there’s no particular order to it.
Recognize that grieving is a process, and it’s very personal to you.
48. The person is not the disease.
Your loved one is not the cancer. They are not a “cancer patient.” They are who you’ve always know them to be. Their spirit, their essence, is exactly the same as it’s always been. Treat them with the same love and dignity you always have. If you have trouble seeing past their changed physical appearance, close your eyes and feel their energy.
You are with the person, not the disease.
49. There will be good days and really hard days.
A good day may mean a successful surgery. A hard day might be finding out the cancer has metastasized. Over the past three years there were many goods days, and many hard days. If I have one regret, it’s that I didn’t celebrate the good days with my dad enough. Good, as in “normal” days.
At the time, you just think normal is normal. As the disease progresses, you wish you could have more “normal” days because those were actually the good days. Try not to take those good days for granted.
50. Celebrate life until there is death.
My dad died the week after Valentine’s Day, which was also his birthday. It was nearly impossible to figure out what to do for him. He couldn’t eat, so birthday cake was out of the question. He couldn’t read anymore, so no books. His wardrobe consisted of a hospital gown, so no new flannel shirts.
I decided on a huge, silly, pink monkey stuffed animal. He hated it. It was perfect. He nicknamed it Obnoxious Ollie. My brother also got my dad a gift. He bought us all a beautiful set of wind chimes and told my dad that when the chimes blew, we would all think of him.
Needless to say, we were all crying our eyes out with that sentiment. It was perfect, too. We knew gifts didn’t matter, but then again, they did. If we didn’t bring him something, we would be acting as if he was already gone. And he wasn’t.
It’s important to focus on life until death. And then after death, to celebrate life again.
If you or a loved one is affected by loss, you can find grieving resources at The Grief Toolbox.
A version of this post was originally published on Story and Space.
We want to hear your story. Become a Mighty contributor here.
Thinkstock photo by Delpixart