The loneliness of the NET cancer caregiver
Someone said to me today that while my work on NET cancer no doubt keeps me busy that I must also feel awfully lonely part of the time. I shrugged it off. It is what I do. How I feel does not matter to me very much most of the time. And I sublimate the loneliness into the work that needs to be done so that others do not feel what I feel when I let myself.
NET cancer dies twice in this story…
The truth is I am lonely most of the time. It has nothing to do with whether I am with people or not. I am truly most lonely when I am in a room crowded with friends. While Jane and I always appeared to function independently of each other–and often did–there was always a psychic connection between us. Even divided by a hundred miles we were somehow aware of each other’s existence and love.
The amputation
The severing of that link on the day of her death was the equivalent of an amputation; suddenly there was no echoing heartbeat–half my lung capacity vanished. My ability to hear and process sound was halved, food lost both its smell and its flavor.Only half my fingers have feeling. None of that is literally true–I say it merely to try to create an image of what life is like when the person who truly is your other half is no longer there.
I can’t listen to James Taylor…
In the company of others I am too often reminded of what we had–and what I no longer have. There are moments–more of them the last two weeks or so–the silence where she once was is too great to stand. Those are the dangerous times–the times when I would like to curl up into a bottle and pickle myself in a sheen of alcoholic incoherence. I try, instead, to lose myself in reading and writing and in tasks that require just enough thought to distract my mind. I watch a movie or put in a CD I know enough to sing along to–but not one we shared a love of.
NET cancer kills other joys
I can’t listen to James Taylor–especially not “You’ve got a friend.” Jane listened to and sang his songs every day in the hospital–that one most often. It turned up on the radio one day last week–a duet with Carol King–and I was glad I was 100 yards from the driveway. More than that and the tears would have put me in close contact with a telephone pole or some other obstruction.
Those are the dangerous times…
Kenny Rogers’ “The Gambler,” especially the chorus, was what she sang before she lost herself in each coma: “You gotta know when to hold ’em, know when to fold ’em, know when to walk away, know when to run…” It leaps into my mind unbidden at any moment of the day or night–and there I am, locked into those final brutal hours, holding off my own pain so she could slip away without guilt–being strong when all I wanted to do was melt into death with her.
My unfinished business with NET cancer
But my work was not finished here. The fight against NET cancer was her shroud and the fight against NET cancer is the cloak I wear in my mourning. Like the old widows who wear black from the day their husbands die to the day of their own deaths, so do I wear NET cancer.
The truth is I am lonely most of the time.
It makes me poor company at all times–but particularly so in the waning months of the year. Then I relive each day of our struggle. And while I marvel at and admire her strength, I also know how the story ends. There is joy there, of a kind–and heroism.
But there is also this long and awful silence her absence creates.
NET cancer dies twice in this story–once through her death and once through what her death inspires. But even the final victory will not bring her back–nor end this silence.
