October 1968 — taken the first week we met — in Leeds, Yorkshire, in front of a large Victorian church
Dear friends,
On this day one year ago my beloved and I were told he had esophageal cancer. He was supposed to have an endoscopy and colonoscopy because a barium swallow produced no diagnosis about why he was having trouble swallowing. I was unaccountably nervous about this — well partly it was that friends had told me having trouble swallowing was a “bad sign.” I had to wait longer for the procedure to be over than anyone else in the room, 2 hours. As I walked to where Jim was lying down, the nurse said the doctor wanted Jim to be awake to hear what the doctor was going to say. That was the only acknowledgement that something important was about to be said. The doctor produced a picture, a sort of x-ray of three large lumps which he said were at the bottom of Jim’s esophagus; I later saw the same picture in a wikipedia article (how ugly it is, no?) on esophageal cancer. Unfortunately, I don’t remember what was the expression on Jim’s face, only that the doctor announced this fact as if he was telling us the price of coffee had gone up. He and the nurse carried on with this tone of indifference for a couple of minutes as they began to say we needed to make appointments with this and that specialist. I probably didn’t look at Jim. Maybe I closed my eyes.
I stood there. I had never heard of esophageal cancer. Of course it hit me like a ton of bricks how my sense since retiring and noticing how many tums Jim ate, and that his non-prescription medicine to help him cope with his acid reflux was the culprit. This was later denied — I was (as began to be common) given these varying statistics to tell me how complicated everything was, and there was no bigger statistical development of this cancer from acid reflux than say smoking or drinking or nothing at all; to be of course contradicted by the qualification that esophageal cancer “until recently” (another vagueness) was rare so they hadn’t good statistics. No they hadn’t and haven’t.
I began to cry and that at least got some acknowledgement from them that a note of compassion might be appropriate at this point.
When we got home and told Yvette, she immediately went to her computer and read the prognosis on wikipedia: grim. I could scarce believe what I heard and read: Jim could be dead before the end of a year.
From that hour on our lives were poisoned. Both of us seemed never to be able to forget this thing there and its potential. Among the books I read during this early time, was the graphic novel, Our Cancer Year, attributed to Harvey Pekar and Joyce Brabner (though by her essentially) with the art work by Frank Stack: I showed and read parts of it aloud to Jim and both of us found surprising how this pair of people treated a similar announcement of cancer as just another of their problems. She seemed to care more about renovating her kitchen than seeking help for his cancer. The book is badly flawed by its buying into US values and norms and lack of serious critique of cancer treatments & the state of what is comically called research. Fundamental research is hardly done and it was cut drastically during the sequester last year — makes no money for anyone, does it?
Last night I couldn’t sleep more than 2 hours at a time despite taking some sleep medicine. Memory was preying on Morpheus.
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John Atkinson Grimshaw, Roundhay, Leeds (1881)
If I had it to do all over again — which I don’t — I would take seriously and not reject his first reaction, which was to do nothing. At the time I couldn’t understand how he wanted to do nothing nor the sense of his argument, “It’s not if I die but how and when.” I wasn’t like Skylar in Breaking Bad, forcing her husband to take super-expensive treatments by having a family pow-wow and openly punishing Walter White until he agrees; Jim, alas, did come away from this stance on his own after we saw doctors who presented us with hopeful scenarios (later Jim called all the nightmare things they did “shows of force”). I did have friends who said, go away on a trip. I didn’t realize they were serious and listened to those who told me of people who lived after treatment, for 5, 10, more years.
I would now have bought tickets to go to England and spent one last month there. Yes The Final Holiday syndrome. Why not? Go to the Lake District; he wasn’t so keen on Cornwall so wherever he wanted. Back to Yorkshire which we had loved. He never got away. We would have enjoyed what we could. He was still strong before the doctor performed that criminal operation (esophogectamy) on him (for a neat fee of $8000). He would have seen England once more.
Alfred Sisley, The Bridge at Hampton Court (we stayed in Hampton Court palace one spring in the later 1990s — part of the gardener’s house knocked up into flats rented out by Landmark Trust)
I could not convince him to go for a consultation with the super-expensive famous doctor whom an investment banker friend (naturally) recommended. But if I had it to do all over again, I would have spoken up forcefully to do the chemotherapy first. When that jock proposed the operation first, I saw real doubt in the eyes of two of the doctors. I mentioned this to Jim but by that time he was not thinking. When an early day for this operation opened up because another person had (as this doctor said) “freaked out” (wise person) and put it off, or refused, Jim agreed and (as I wrote that day) suddenly it was happening within a week.
What I did not know, what no one told me was that operation had nothing to do with preventing the spread of his cancer. It was useless for that. Yes it got rid of the big lumps, but they could be brought down by chemotherapy, shrunk and perhaps the chemotherapy might have prevented the liver metatasis. If not, at least when it happened, he would not have suffered so much more (as he did) because his stomach was now near his neck and very tiny so for 11 weeks he had toxic showers from his liver while the cancer was devouring him and throwing poisons throughout his digestive and execretary system, to say nothing of withering his bones.
The painful truth is we were terrified of death and not thinking straight. If we had used our brains, we would have weighed the risks (serious complications, some of which happened), the benefits (nil, actually as the lump could have first been shrunk by chemo) and bad side effects (so heavy even if he had lived). In previous encounters with doctors, Jim had said no to heroic operations. No to removing a good deal of his intestines as a way of not having diverticulitis. I say no to procedures regularly. And we never really discussed our fear of his death. We did try, but we did not get far in the process of inferring what to do.
We were badly thrown. Maybe we should have thought about the equivalent of renovating a kitchen. For us a trip and enjoying our last summer should have been what we choose. Face he was going to die and try to make his last months good. We did not.
If I had it to do all over again, I would not have had the hospice people in so early. He hated them on sight. Struggled against them until near the end. And was angry at me for being a docile dupe to agree to it. But when I realized what they were, I used the services and fought the exploitation.
Perhaps he would have lived longer had we done nothing; perhaps not, but he would not have suffered as much until near the end. And then all is hopeless, for I now know that “comfort measures” when dying is a euphemism for sedating someone so heavily they can’t complain and are only half-conscious. They are still undergoing a horrific ordeal.
****************
Remedios Varo
So what is my life like? Well I do lots of things, busy much of the day and into the night too. I am teaching again at OLLI at AU, a Jane Austen course. I enjoy myself while doing that (I do) and am most of the time cheered and feeling not so helpless as I often am. I will teach Trollope there in the middle fall (another 10 week semester). It’s looking as if I’ll do an OLLI course at GMU this coming earlier fall: “The Historical and Post-Colonial Turn in Recent Fiction” (Paul Scott’s Staying On, Graham Swift’s Waterlands, J. L. Carr’s A Month in the Country and Andrea Levy’s Small Island — I really should call it recent Anglo-fiction). Of course I have to get there, and if I don’t have my license, it will cost me and/or be very difficult to do, but just doable I hope.
Reviews galore: I’ve written and published one last month (High Minds no less) and have 6 on my desk top waiting. One excellent book I started yesterday: Kenneth Johnston’s Unusual Suspects: about the destruction of hundreds of lives of English people in the 1790s because they protested the oppressive regime and dared to fight for some kind of economic and social justice and reform. A fun book about women who lived alone in the US from the later 18th century to the early 19th: Lee Virginia Chambers-Shiller, Liberty, A Better Husband (an allusion to a diary entry by Louisa May Alcott). I’m back working on my movie project and have blocked out a first third on screenplays in five Austen movies — all of which I love watching, among these Death Comes to Pemberley, Lost in Austen, Jane Austen Book Club. I read about screenplays and re-watch Downton Abbey to find some momentary forgetfulness in (I forget that Jim is dead when it’s very late at night — think he’s back there in our bed). I’ve the printed informative screenplays and scenario books for these: essential tools for understanding. My life on listserv and writing to and receiving letters from friends.
I went to two conferences. A feat.
I have made a couple of local friends; I have made some adjustments to the capricious unjust withholding of my license by the DMV (it seems until mid-June is what their spiteful Powers have decreed; if not then, my lawyer says we have a good case to go to court with). I read, write, study on this wonderful computer with a sweet IT guy on its other end (reachable by remote and phone and my Macbook Pro if anything goes wrong); Yvette and I eat together, talk together, sometimes manage to get to a movie together. I go to the Haven for a support group where the people are nice — though this Saturday it was dispiriting. Only 4 of the 8 people who promised faithfully to come each week for 6 showed. I did feel some of what the two facilitators helpful while there, but know that when the six weeks is over I’ll be back to my fundamental condition. I go once in a while to the Aspergers Adults of DC meetings. I like the people there and should go more often; I feel comfortable and share experiences. It won’t come to an end at the end of six weeks.
I am attached to my cats and we have a real triangular relationship — when Yvette is home, there are the four of us. Caroline comes by regularly and performs her practical miracles.
But all this, which will probably gain approval, is to no real purpose or doesn’t matter. Doesn’t really mean anything — the way the checks coming in each month do and all the money in the banks Jim left me. That is what sustains me practically I’m filling time, filling the emptiness. I’m not as desperate in mood as I was the first few months, not driving myself in the same way, out and in. But panic and anxiety attacks are frequent, if more controlled. When I get these my thought is the problem is I don’t want to die. Anyone who tells you (if you are still reading) that people who endure depression or these kinds of attacks, are self-indulgent is an ignorant fool. It is a most painful experience to find yourself (as I do in a car sometimes) lost and become deeply panicked you won’t find your way back.
Drew (not his real name), one of the facilitators of the Haven support group, drove me home again on Saturday. Very kind. His wife died of cancer 12 years ago. He said that a Michigan study shows that there is a bell curve of grief and recovery (these states are called) for people widowed.
A certain percentage on one side are “resilient.” These people don’t seem to grieve long and are said to adjust quickly, be able to be content with another or different life. On the other, a smaller percentage do not what’s called recover. We were given charts distinguishing depression (as usual in my experience, the description does not fit what I know of depression at all, nor of other people I’ve known — it’s a simplified caricature) from grief (I do have some of the symptoms described there) and then pages on anxiety.
It seemed a clueless kind of document. I know other widows say they feel desolate now their husband is no longer in the world, frightened. Also can’t sleep. How one gets through the day a piece of work. Talk of loneliness. Shall I admit I went out with an older man twice and how sickened I was by the aggressive stupid behavior and some sly vulgar language. Hyperion (my admiral) to a satyr. Unfair probably but I felt such shame and distress when I got home. No new partner for me. No one can ever come near my Jim with his wit and dignity and tender affection. I have been reading about the written history of widows and widowers and how they appear in literature and art. It’s grating to read these ludicrous stereotypes that flatter and leave complacent those who are oblivious to most feeling but their own. Documents do tell of deaths, remarriages, children, money troubles, court cases, business deals but until the 20th century only the few courageous life-writing pieces by the people themselves say anything that’s real and matters when it comes to understanding. I have to remind myself that widows/widowers are not the only category of human beings ill served by books, journalism, & pictures.
I am on that end of the bell curve where I don’t change, don’t “get better.” Funny looking diagram. These words are so inadequate. I don’t have words for what I feel and it’s not that I am sick. My state is normal, common, usual, I’m part of a bell curve, after all. I need no doctor. The shock has passed and I see the reality for me.
A deep deep hopelessness. He is extinct. Anger for him on how he was thrown away and treated while the pretended care (aka neglect) was going on. The comfort and fun of my existence is gone forever. I have no comfort now. When he was here, there was fun; his existence made my life bright, he thought of things for us to do together; I lived by his side.
I am beyond grief. And don’t have words for this condition. I see a long time ahead of this — stretching out. 67 is at once too old and too young — too much time left to endure except I get a fatal disease, have a fatal accident or act myself.
A full year has passed. Sometimes I find myself wondering, did he ever exist? has it all been a dream. But I do have the photos, clothes, books, relics, bank account … my memories.
Poor man. Poor guy. Dead and gone. Went in an agon. How I feel for him, regret for him.
Sylvia
Under the Sign of Sylvia II 
Natalie, thank you very much for the comments on Gioia. Right you are it’s the prosody and form that make the poem. Annie Finch has a good book on women poets who use rhyme, meter, and formal elements — defending them because there is still a prejudice against too much formality. it’s called A Formal Feelling Comes — from Emily Dickinson. . She prints many formal poems of the last 25 year and then talks about them deftly and concisely and wonderfully well.
for me poetry is ever a personal matter. Personal connections fill much of my reading of imaginative literature.
It’s very quiet here now. I’ve turned the radio off; Clarycat is looking out the window and I read Mansfield Park where Fanny tells Edmund he is “such a comfort” to her because he supports her views. The admiral was that kind of comfort to me, and how he often expressed himself in a kind of teasing gentle humor which helped blow my anxieties away.
Ellen,
Thank you for sharing this. I do think the shock of a cancer diagnosis can make rational decision making, if there is such a thing, very difficult, especially given the lack of information in our culture. The loss of Jim is unfathomable. People matter more than anything and are irreplaceable.
We did not admit to the terror we were acting under. We would have been much better off had someone said, face it, he’s dying and soon … when Jim said it’s “how and when I die, not if,” he did not follow that up with, therefore let’s try to enjoy what we can here with the time of strength left to me …”
It was only when it was too late — after the operation, after the cancer went into his liver, that I proposed going to England for one last brief hurrah. Maybe I didn’t believe I could do it but if he had acquiesced even a little, I might have tried and done it. Each time I proposed something (the Boston doctor, a trip to Sloane-Kettering), he turned away and would not. So I do think that his early background of being nobody, nothing, of being taught to accept his low place in the Big Order (the day boy in the public school) was part of what killed him so terribly. It enabled the thug- and criminal-doctors to take total advantage of him.
In films people told they have a fatal inoperable disease, go off on holidays but perhaps that’s a fairy tale. I’ve been told of people who said they would do that and instead went in for treatment. These people with their false hopes are irresistible and they make huge sums on them. Breading Bad is another fairy tale: the man who breaks out — in the US real cultural world there is no understanding of culture (books, art, anything at all) for him to turn to; vacation is going to imbecilic glamor like Las Vegas or buying yourself another headache of a house.
I can understand the feeling now that Jim is gone of feeling like it must have all been a dream. Tyler
I don’t know what to say Ellen. Except that you have done well. Some do not ever want another, like Jutta, others like me find they can love again. However, it seems a matter of chance. I wasn’t looking, thought I was too old, but I am happy. The pain of the loss of your soul mate lessens, becomes bearable, but that emptiness is hard to fill, even with things you enjoy. One thing I found was that the panic attacks eventually went, I hope they do for you.
I believe you are right about cancer being an epidemic. Jutta’s neighbour was diagnosed recently and the prognosis was a mere 6 months. She actually died in less than three months. Her husband is absolutely flattened with grief. Yet another pair of lives blighted by this terrible disease.
Clare
There’s a real sense in which I have no words to describe or name what I feel. However I appear socially or on line carrying on, in my heart, my brain I am so desolated, so astonished that one year ago he could be here and what seemed wrong was a problem in swallowing and a certain tiredness, a malaise, he didn’t feel himself quite. Otherwise a strong healthy man of 64 And all the terrible things that happened — like a dream his existence, like a nightmare those months.
He was a noble person, cut off from the years he should have had, thrown away because nothing has been done for real in 30 years to understand or prevent cancers — as a group I loathe the medical establishment and have no trust whatsoever in it. I am left without recourse to do anything at all about this or my loss which is irreplaceable.
I could just stop writing about it but I have a need of release. For several nights coming up to this anniversary I was sleeping badly and the night before I hardly slept at all. I felt a little better after I wrote the blog. But without medication of some kind I can’t sleep and I’m told both of them have serious side effects — yet I know that the accident was a result ultimately of sleep deprivation. Again no solution.
Your friend who lost his wife is left the way I am. The world is filling up with people like us and burying people like Jim and your husband and his man’s wife. Rien a faire? (Is there really nothing to be done is how that translates.)
Yes, rien a faire? sums it up. Here a lot of money is put into cancer research by big medical charities, but little into prevention. I heard yesterday that altho’ survival rates of many cancers are up to ten years, only 5% of patients with Jim’s cancer last that long.
I noticed a few days ago that you weren’t sleeping again. I hope this passes. I remember that when I wasn’t sleeping, I coped less well and got even more upset as a result of the fatigue. The only thing to do is carry on and do your best. We both send our love and a hope for easier days to come.
Clare
Huge sums are made by physicians, drug companies, tech suppiles, hospitals on cancer patients. They fill whole buildings. And on top of it they have the gall to demand you accept them treating you with hard indifference and cool pretenses all is just fine, making you wait for their nightmare treatments, charging you high sums. I am now aware why some people told they have cancer, kill themselves.
I now know that Jim and I should have faced squarely the real probably he had only a short time to live no matter what and only resorted to drugs for pain when the cancer began to devour him. We should have gone on a trip first, and never never succumbed to such a drastic ghastly operation. If I can guess his thinking, he hoped he could grab five more years by that operation; that removing that lump and then getting radiation and chemo it would give him more time. He actually would repeat the idea that the surgeon said he would not do the operation were Jim’s diagnosis say T2 with node infection or T3 as if that meant the man had scruples and that gave Jim some hope the operation had some real use or power. In the event Jim was T3 and nodes were infected.
It may be we should have been aware — that his acid reflux was implicated in cancer. Looking at the wikipedia article today I see that under “Barrett’s syndrome” is a figure of 20% for those who develop Barrett’s syndrome and you are advised to have the endoscopy Jim had on that April 28th every five years. No one said he had Barrett’s syndrome and had he had that procedure say 5 years before it would not have been found — but I can see that we should have known and done that. If a doctor warned him, I was not in the room, but if a doctor had, Jim would have as he usually did obey doctors. Far more than me.
Yes I can’t seem to sleep without medication. I’ve been experimenting on what to take and how little I can get away with to provide say 5-6 hours of sleep.
Thank you for your real love and support. It helps make living more bearable. I lose myself as far as I can in reading, writing, watching movies, the teaching, when I do have a friend I am empathetic with that helps too. I really have one local person — my friend met at the Aspergers group. I did have someone here yesterday who I think was suggesting (however tentatively) this was our fault, and doctors were just fine. I won’t have her here again. Won’t invite, won’t encourage this. My rage is intense at such people – it’s your fault. That absolves the society of acknowledging or recognizing. Two weeks after he was dead I made the mistake of getting on the phone with someone who calls herself my friend; within minutes she was telling me it’s my fault if I am miserable and don’t build a great wonderful life — I will never forget or forgive that.
So I write these blogs — not that it helps against such people. For those like me — including the middle section of that bell curve. Fun, comfort, hope over.
That there are just no words for this condition. As the society does not honor mourning for real and is ever after you to go through some “process” and “get better” as if this were unnatural, it’s no wonder there are no familiar terms.