The Hardest Words I Ever Had to Say

How do I even start to cover my biggest topic — the one which has covered me for so long? The subject of dozens of blog posts already: the relationship my late husband and I shared with Death. Cancer was the horse it rode in on, but cancer was easy. You can fight fight fight! There is research! There are communities. It’s engrossing, engaging, and encouraging. I can’t tell you anything about that that you haven’t already heard.

What I can tell you is, the most important thing I ever told my husband. After, of course, I love you. 

Gavin spent his four last days in hospice. He had been living with a terminal diagnosis nearly two years; he’d survived two brutal surgeries, including one which failed, and five (I have to write them down to be sure) drug therapies: injections, infusions, pills, pills, and more pills. The last two were the two latest possible, delivered in his last six months, at the cutting edge of treatments and not even on the market yet. (We were familiar with the code names for all the investigational drugs in all the pipelines). And he was getting an increasing number of what are humanely called “opportunistic infections” but would be called demons in earlier days: shingles. Candida. Pneumonia. An unspecified bacterial infection. An unknown fungal infection.

To paraphrase D00ce, that all sucked, and we had a kid in diapers at the time.

We never went to bed angry, but we had a lot of really bad days. Every day we said “I love you.” That was easy and it was important.

But the third day in hospice they told me: You have to tell him he can leave if he needs to.

Did I tell him? I don’t remember. I regarded it as a duty to tell the quiet parade of his closest and oldest friends visiting: Before you go in there, I'm going to ask you to do me a favor: please tell him you’ll take care of me and my daughter. Please tell him he can leave if he needs to.

Those were the hardest words I ever had to say. I said them over and over. It was almost as if I was hearing it, too… the repetition helped. We’d entered hospice saying “this is to rebuild your strength.” I hoped he’d recover enough that they’d let me take him home and I’d have lots of help and he could die, surrounded by his adoring family, in a bed in our living room. You know, a month or three later. After his birthday party, after fair goodbyes, after making peace and in a state of blissful acceptance.

Instead he died two days later, in a bed in that same hospice, surrounded by his adoring family and a few friends and a miniature schnauzer-dachsund mix.

“The end” had been so far away for so long…. We danced with it. I asked a close girlfriend if it seemed, when she visited during a very, very bad period, that we were ignoring death, like an elephant in the room. She said, No, it was more like a kitten in the room, and every now and then one of you would lean over and pet it to pay some attention. You couldn’t ignore it, but you didn’t seem afraid, and it wasn’t that large.

But we had ignored it at times: we'd done everything. We’d shaken our fingers at death, looked it in the eye and screamed, we’d tested it, we’d tried to push it around. We’d made allies against death, and we’d bargained. Bargaining is pointless when you have no idea that May 31st will be the day you have to say, “it’s okay to leave if you want to.”

We never said goodbye. That was hard. Not that I felt it until later… there was no question he was “gone”… but it’s a romance that’s unavoidable, and it stung only as I hit everyone else’s expectations of what “the end” might be like, repeatedly, in the months and years following. But small stings, nothing like those we endured when we were losing our fight against cancer.

When you’re still fighting, you want to know the names of that bacteria and that fungus. When the doctors tell you it doesn’t matter, you begin to hear it: this is the end.

Don’t get me wrong… this is not about Elizabeth Kubler Ross and the Five Stages of Dying (not "of Grief"… but that’s another post).

But I wish we’d accepted that death wasn’t a kitten any more. I wish we’d let hospice in sooner. We thought we would… when it was “time.” We had talked about hospice, earlier in his illness. We loved the idea of a “good death.” But doesn’t everyone just want to live just so, so much more? But the closer that “time” got, the deafer we became to its knocking. Who could live with that sound? We turned the Baby Einstein videos up louder. We stopped asking Dr. Google about symptoms. We got mad at the oncologist.

Now that I have met hundreds of people widowed after long illnesses, I see that the elements of my story are ridiculously common. Pretty much every single one except the exact details, the dates, the drug names. But the deep ones: the hard ones, the emotional scars and fights and invisible enemies. The damage done, not by not knowing (because there’s nothing we can do about that except yell at God and doctors), but by not talking and not accepting the oncoming end.

Cancer may be a battle, but life is not. Life is to be lived and for love, and that is hard to really embrace during wartime. By the time he died, it wasn’t cancer any more. It was pneumonia and our unnamed bacterial and fungal enemies, and organs breaking down, one by one. At any rate, our oncologist had signed off long before: that’s a sign.

That’s what I hear when I hear about fighting cancer on the internet. That’s what I flash back to when I know a cancer blogger gets an opportunistic infection. That’s what it was like, and I can remember the detail and the complexity, the numbness and intensity intermingled, when one of my closest friends tells me that her close friend’s family won’t talk about what’s next when her lungs are filling up with fluid. Not quite triggers… memories of deep and dark times, and I feel huge lightness after finally sharing my side of my part of the story.

That’s how much is still in my brain and body and heart seven years after diagnosis, five years after his death. And oh, how I wish I could change it for every single person reading this.


Michele Neff Hernandez said...

This is beautiful in a way I find hard to describe Robin. Love you.

Lisa said...

A family friend just went through this. It was quick, and it was ruthless, but no one would speak of 'what was next'.

We went through this with my Uncle. It's as if acknowledging out loud, we are inviting death to take our loved one, and in our silence there is an understanding that this can't possibly be it.

Beautiful post.

Valerie said...

"Now that I have met hundreds of people widowed after long illnesses, I see that the elements of my story are ridiculously common. Pretty much every single one except the exact details, the dates, the drug names."
Yep! It's crazy. As I read you post it felt like you were recounting Dave's 6 months of illness and death.

And so many "I wish"es. The biggest? I wish we'd said goodbye. I was by his side as he drew his last breath - and we never said goodbye. We had so much love for each other - and we never said goodbye?

Nicole said...

Your words hit very close to home for me. In a strange way, I'm grateful that my experiences aren't abnormal. That I'm not crazy.

My husband fought and did everything right with treatments and avoiding anything that could possibly make him sick. And yet a fungus with no possible treatment ended his life.

Throughout his treatment he talked about how he worried about what would happen to me if something happened to me. In his 10 days in hospice, I had to lie to him every day and tell him that I would be okay. It was the hardest thing I said every day but I knew he needed to hear it.

Like Valerie, while I was able to say "goodbye" to him, we didn't have that moment together. It's not fair. but unfortunately, none of what we are going through is fair.

carolyn said...

Robin my love,
I was doing fine reading this until I got to the word "kitten". For some reason.

We never really said goodbye. The closest thing to that was Jeff wondering aloud whether he should die at home or at our half-built camp (the idea of which terrified me!)
I just finished reading Lisa Niemi Swayze's 2nd book, and there's a long chapter about the "rolling infections" that start when the body can no longer fight. The indignity of being in a human body that does not work is harrowing to witness, even if the person in that body is graceful and accepting. It is all so hard. All I can hope (and I KNOW this is true) is that some of us come through the other side better people than before. Having learned that to be of service is a huge gift.
Thanks for all your work.

Anonymous said...

This is so beautifully written. Amazing how universal are the feelings, impressions, and reflections of a surviving spouse.

My husband never really believed he would die from hep c, so we didn't say goodbye. I'm ok with that because I feel like it wasn't necessary to say that in voice. To let him go mentally, spiritually, and energetically, I felt as though I was communicating with him on another level - the same level in which I communicate with him now.

Michelle E. Vasquez said...

Robin, yours and my story are similar. Al was defeated by cancer four months after the diagnoses and surgery to remove the kidney with the grapefruit-sized tumor. It had already spread, though we didn't know that at the time. We went to hospice for less than 24 hours, and when I asked him what he wanted to do the next day, he said simply, "leave." He was losing his ability to speak.

Our home hospice lasted only nine days. You were surrounded by family and friends. His family became scarce in the last few days. Denial. We were all in denial. On the last day of his life, I did tell him it was okay to leave. I think he had been struggling to stay, and in the last few hours, I wonder if my giving him "permission" to go allowed him to let go.

It's been almost 4.5 years, and I can relate. I still miss him terribly and wonder why he had to die. Thank you for sharing this, Robin. Michelle

Supa Dupa Fresh said...

Thank you all, so very much. You honor me by reading and by sharing your stories, too. Sad we have this in common, and yet, I would never want to go back... and if I had caregive again, I know I'd prefer it to dying first. Still.

Nora Miller said...

Robin, I too share much of your story. My husband was diagnosed in April and died in early November. We too went through the stage of hoping that the horrible chemo would give us some more time to be "normal" for a while before...before whatever came next. But it never did. The one element of my story that you and most of your readers weren't able to share was that we lived in Oregon, and so my husband was able to plan his last moments. Before he had lost all of his strength, and before he started into the last stages of infection and organ failure, he chose a day and gathered us together and said goodbye, then took his legal final prescription. It was a gift we gave each other, to share his last moments while he still could speak and see and say goodbye. While each of us weathers our loss as best as we can, I think this one different element made it easier for me to cope with his death. I encourage all of you to see what your legislature is doing to make a death with dignity law available in your state. Because my husband was able to control his last moments, my family has found it easier to pick up the pieces and go on. We all deserve that kind of peace.

Abigail Carter said...

Beautiful Post Robin.

Thanks for sharing. I've always thought that even a prolonged death is a sudden one to those involved.

Stacy @bklynstacy said...

What a brave and honest post. I feel some similar thoughts about my last days with both my parents (who both were struck with terrible unexpected illnesses three months apart, and died, five months later, a month apart). I wanted hospice to be healing. I wanted to be able to hold my parents' hands and look bravely at the passage they were readying to make. But my father was too brain-damaged, and slipped away from me one day after we moved him from the hospital to the hospice center when I was at home with my son. My mother spent her last weeks confused, uncertain, and in denial. I had to remind her her husband was gone, that she had terminal cancer. I had to tell her it was time to "bring in the men on the white horses who will be able to take away your pain." She agreed, and then disappeared. Those last five days of being there but not there, barely breathing, I begged her to go. I told her she was finished with her body, and it was time to be free. And still, she waited until no one was in her room to finally set herself free. *sigh* There are no words for those terrible weeks and days you walk toward the eventual end. You want it to be lovely, but many times, it's simply not that, no matter how much you try. Thank you for writing this post, and giving me the space to share these memories that haunt me still.

Karen said...

I'm one of the hundreds. And yes, what you wrote so beautifully resonates. In our case, it was a matter of four or five months from diagnosis to those four days of hospice at home. And it was a matter of being told to tell him he could let go. How could I tell him to do what he didn't want to do himself, when he hadn't even had time to realize what was happening, when the doctors had told him he had two to three years and he had grasped on to that lie with all his being and refused to let any other possibility in? And when he was already so far lost to me that I wasn't sure he was understanding me anyway? But I, too, am not sure what it was I managed to tell him, not sure he even understood me as I held him on that last day a year and seven months ago.

But thank you, thank you for your eloquence and for sharing what so many of us have experienced, but what still makes me feel so isolated and lonely. It helps, somehow.

canape said...

Thank you for sharing this. <3

Ami said...

I went through this with my Dad who died this past year from lung cancer. I remember telling him that he could leave when he needed to. It was so hard to do and probably the most unselfish thing I've ever done.
Beautiful post. Just beautiful.

Barbara said...

Thank you for writing this. It is true, though unimaginable: there isn't much unique about these incredible losses we've lived through. Death has been part of life forever, and there are no generations before us that managed to NOT go through these experiences eventually.

Jill Schacter said...

Such a beautiful, sad post. So many of us struggle with "moving on", "healing from loss", "finding renewed hope", and these are important tasks, but these losses and our thoughts and memories about them will always be with us and have changed us in so many ways. Loss is forever, like love.

Ferree Bowman Hardy said...

"There's wisdom in the house of mourning," and thanks for sharing it so well. *

Supa Dupa Fresh said...

I usually don't have many words left to respond to your comments, and for that, I'm very sorry. It was kind of each of you to write, and in some cases, it was also brave and difficult. I want you all to hear that I appreciate your responses... but all I can say to each and every one is thank you, thank you, and again, thank you.

Anonymous said...

God bless you and your family. I felt exactly the same when my 45 year old mother was dying of cancer. I was 25 and could not accept that she was dying. Being older and wiser now, I would have done things a lot differently, but it's hard when you're in the middle of something so huge and horrible. She knew we loved her so much and it was more than we could bear to talk about, but I know that made it harder on her.

Unknown said...

Thank you so much for this post. It was beautiful and tragic all intermingled together.

Life Lessons said...

This is so poignant, thank you for sharing your thoughts. One of my best friends couldn't do this for her dad because she felt like he'd think she was giving up on him. So through the long last night of his life, no one said goodbye. I've thought a lot about that over the last 18 years since it happened, wondering what I would do. Now I know. Thank you.

Carmen said...

Thank You for your blog.
I lost my Dad 2 months ago. I don't even know you or the other commentors...but I can't stop crying at feeling your losses and mine. He had cancer too. We didn't fight it conventionally at time of diagnosis. It was already stage 4 and in 3 or 4 organs. We did have hospice come in 2 days a week to get basic vitals and to adjust medicines. But he only wanted the quick release morphine so he could control when he took it with the occassional slow release morphine. His main care providers was my brother the last of us 4 kids to still be home (he had just graduated from college) and my mother. She retired from work during that last month. Hospice was good, they told us what was going to happen through each stage of dying and grief. He died a little over two months after diagnosis. At the time it seemed like he was sick and in pain for years. Looking back on it I think its b/c you are breathing through every raw second of what you are faced with. It's so hard when the person's mind is still "there" and the body just slips away. One day he told me he couldn't believe how thin he was. I told him not to worry that his soul was still the same and nothing could change that. He was still my Dad and I loved him. He said I was "a rock." He gave me a soda when he was still able to walk to console me one day. Its still in the fridge. We are one of those Southern families that help each other even if we are the one that is very sick - give you the shirt off our back. They are right about stages of grief. There is no right order. You can pop back and forth through any stage and that it's ok.
The last day with my Dad - me and my little sister went home to get some sleep, it was my middle sister's turn to be with Dad. She noticed in the early hours of the night that his breathing had drastically changed. She and my was turning him every four hours since he was not able to move his body. She recollected that the last move didn't hurt him at all. Then it was time (we were told about the breathing). Mom, my sis and brother were there. My sister told him that it was ok and that it was time to go....that he was doing good...doing good....and then he went. He passed 1234. December (12) 3 at 4AM.
Thank you for allowing me to "get this out."

Hyla Molander said...

This is the digging out of pain and truth and love that reaches directly into my heart. Thank you for sharing your soul.

Supa Dupa Fresh said...

Carmen, I'm grateful that I was able to give you that space and I appreciated hearing about your experience with your Dad. What love! We all deserve to share these stories, when I hear someone else's, I understand how sacred that right is (not when I hear my own though!).

Everyone else, thank you, thank you.... big hugs for your visit and your thoughts!


Suz said...

Oh, my God,
You just described my recent life (and death of my husband) to pancreatic cancer perfectly. I thank you so much and will read more.

Suz said...

Oh, my God,
You just described my recent life (and death of my husband) to pancreatic cancer perfectly. I thank you so much and will read more.

Anonymous said...

I lost my wonderful husband after a nine year fight with cancer and I do understand so much of what is written here. But I did have to finally face the fact with his last hospital stay that he would not survive - this time. He had endured so much over those years - chemo, radiation, spleen removal, angioplasty, 3 bouts of pneumonia and many, many infections - some real, some of those ubiquitous "FUO" - fevers of unknown origins. But each time he came through, picked up his life again and went on. But the last week of his life while in hospital he slipped into a coma and suffered so much. Finally the nurse took me aside and told me that this was such a common thing with someone "hanging" on because of not wanting to leave a spouse. I was told I should tell him that it was ok to go, that I would be ok, that I loved him and always would. Those were the hardest words I ever spoke in my life but I finally had come to realize he would not pull through this and it was time to life him go. I did speak those words to him and even though in a coma, I know he heard me. And the next morning after I had said all that to him a few hours previously, he took his last breath and slipped away. Dying isn't what we see in movies or on TV. It's hard and it is is brutal. But I knew the day before his death that he would not live much longer and I had to let him go. It took me months, yes, years to finally come to the point that I felt my life once again was worth living and when that realization came to me, it was like a blessing.


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