Urn like that in Giulio Cesare (which HD Met opera the Admiral so enjoyed)
Medicine is the daughter and mother of nightmare — old medieval Latin saying, as amended by me
Dear friends and readers,
We do have a better doctor: Aloysius C Pereira (he too another doctor from another place on the globe — how the money allures them). On Tuesday he spent a good deal of time with us and explained a lot, was genuinely compassionate though I have to say he still sat looking at his computer and typing more than looking at the Admiral, and until yesterday we again would not see him more than once a month. The news was the worst but presented in a tempered way that left room for minimal hope. The Admiral’s cancer is not only metastasized into his liver, it has moved into an advanced stage frighteningly quickly so that it is functioning very badly (“many chemical abnormalities”). Dr Pereira said he would check out another chemotherapy agent (a third) and we might try that too. He would coordinate with the hospice people. He ordered a IV infusion of water and electrolites in the infusion center and by the time we left the Admiral looked better and had more medicine for nausea and we did know what was in front of us.
He shows us two scans: one the Admiral’s liver when he left hospital after the first operation, a soft grey; the other his liver the other day, all stippled in light black and white spots. Dr Pereira encouraged us to go on for chemotherapy as statistically it’s possible the cancer will be shrunk, and the Admiral could get anywhere from 6 months to a year to live. It was at that point the Admiral went white and I could see him stiffen and looked shocked. I think this was the first he really took in how short was his time, for the problem (as Dr Pereira said) is this advanced a stage suggests it will be hard to get even to that 6 months. Dr Pereira said all liver cancers have this same time-frame whether the cancer is advanced at the beginning or not, but the Admiral’s great misery and many distressing symptoms are the result of this advanced stage.
Tuesday night: a shameful episode. I get this phone call from a man who calls himself Dr Lee, but I now know is a pharmacist in a coumadin clinic in Prince George, Maryland. Literally far away from Alexandria, Va. He has been phoning the Admiral for weeks since he left hospital with a blood clot, endlessly giving specific varied directions for how much or little coumadin this or that day and demanding we go in once a week for INR (checks on his blood). This is how medicine proceeds nowadays. It seems the Admiral’s blood was now 16, dangerously thin, and he must have Vitamin K (this makes your blood clot) and I must take him into the Kaiser Permanente facility tomorrow and stop the coumadin pills. He gets off the phone. I worry it was my fault; that I had given him too much, but all I could remember was one half a day and on the bottle it says “as ordered.” Great – that’s to cover Dr Lee and his pharmacy against suit.
An hour later I get a phone call from Kaiser, a nurse named Heather (I don’t know her last name or would cite it) demanding I call 911 and tell them to take the Admiral to the emergency room or take the Admiral to the Virginia Hospital Center; It’s 10 at night, he’s sleeping soundly. I ask her if she’s ever been to an emergency room and knows anything of the hectic atmosphere, how you sit for hours with no one paying any attention to you, and she replies, “you must” and then when I refuse, that if I don’t he could die and now she’s done her duty, as I’ve been apprized. She almost said aloud now we Kaiser won’t be liable. That’s all she cared about. Not him in the least. Half hour later another phone call, this time a hospice nurse, Elizabeth Schindler, with the same nagging and Elizabeth manages to frighten me sufficiently, (“he’ll bleed internally and you won’t know”) and so I call 911. I wake up this poor man and explain I’m coming with him (I’m terrified the 911 people won’t take as they refused to do on another occasion 30 years ago), and help him dress. The ambulance is out there, the massive people in and I begin to explain and say I want to come if he must go, but “Do they happen to have any Vitamin K to give him?” and then they could go away. I met the only humane man I talked to that night. The leader of this troop. He looked sorry for us and said “this happens all the time.” I looked astonished. “Yes,” these medical people make mistakes and then they nag people to call us; he seemed reluctant to take us. The phone rings and it’s Elizabeth and I tell her the 911 people are there, but it seems she has relented and now it’s no long impossible for a hospice doctor to order an injection of Vitamin K and no longer impossible for her to administer it. “Tell the 911 people to go away” and I’ll be there in 45 minutes.
I put the Admiral back to bed. In the event it was after 1 when she came and she came with 6 pills of Vitamin K, 2 for tomorrow morning and 2 for the next day. I thanked her and she began half to apologize and explain why she was late. It was a story worthy Mohair’s Money-Driven Medicine: one doctor cannot order an injection because he belongs to another organization; a pharmacy can’t do these pills because this is not their remit; it took hours to contact a 3rd doctor who would agree. I offered the idea that she was not to blame but the system and looking back my brief comment about how both patients and medical personnel who would do a good job are stopped by the profit-motive shaping all these individual transactions must’ve angered her, for she sat down in my living room to “explain” to me something. This appeared to be vague suspicious references to the Canadian socialist system; when I tried to describe the real state of the case in Canada, and say Medicare was a single-payer system and so socialized medicine, she turned to my library and said, “you have so many books, have you read them all.” This was spite. She had been longing to say that. This kind of remark shows someone who has no idea why someone would have a library: that one works from it, lives through it. I wanted not to quarrel and just said, “many many” but later regretted not saying “I reread a lot” and showing her Nuland’s How We Die. Foolishly as it’s useless to talk to dense people. She then said I ought to be grateful to her because when I said the 911 people were there, she could have gotten off the phone and gone home; she had stayed on the job two hours she didn’t have to. Again I wanted to be polite and didn’t ask if she got over-time. (I doubt she did). I said mildly I had thanked her. At this she got up and with a semi-friendly tone (fake) left.
This is a horror story — if I had not resisted these awful pressures and without the kind leader of the 911 team, imagine what the night would have been. As it was when he got up I noticed a huge black-and-blue mark up and down his back, and over these two days since bruises. No more coumadin but the harm had been done. Dr Lee called that morning and for the first time I told him what I thought of his business. He appeared to have heard about the incident the night before. He nagged me again to bring the Admiral into Kaiser for a blood test. I told him to go away.
That Wednesday afternoon the Admiral did seem better. He had had 5 rounds of chemotherapy pills twice a day, and who knows maybe they were doing something. He tried to eat — tried to make himself an omelet — failed but tried. He had two cups of tea with milk. On Monday and Sunday he had tried to eat cereal, sit with his ipad as he once did each morning. He couldn’t. It was to me such pathos that I took a photo.
When the twice-a-week visiting nurse from hospice came he sat and talked. He bathed himself — a stubborn reaction to the coming a man who we know realize is there just to help him shower and nothing else. The nurse too I see is very limited in what she’ll do for him physically – she just won’t. (She dressed very prettily by the way, unusual for a nurse, and like a number of these hospice women wears the biggest diamond engagement rings I’ve seen in a while. They are a species in their own right.) He seemed to go to sleep well in the evening, but in the early dawn he suddenly worsened again. He had again been refusing the pain medication (as it makes him so groggy he thinks – but his lack of clarity may be the liver cancer) and it caught up with him.
As I have done before, as Thursday morning progressed, I became frantic with my desire to do something to help him. I began my usual phone calls to the hospice people, to Kaiser, messages to the website, and got the usual unsatisfactory advice and directions: give him this pill from the extra-special box we gave you in the fridge. I left a call for Dr Pereira and to my astonishment got a call back quickly (also one from Dr Wiltz who had heard about this 911 incident and wanted to know the story as I had experienced it) to bring the Admiral in. A very hard thing as he was suddenly much weaker. I should say by yesterday he was again moving out of consciousness frequently; he twitched; he was in great pain without sufficient morphine (though he suddenly told me he had been quietly taking the dilaudid — without telling me so badly does he want to control his medicines), nauseous, could not walk without falling unless supported, every wrong color, his voice hoarse, de-hydrated. When we got to Tysons, an order was in to go to the Infusion center. Now two hours of an IV and another meeting with Dr Pereira. Dr Pereira did not appear alarmed, but he did not look at his computer but rather sat close to his patient and after a while said we should go into hospital.
Why? because there we would have interventions on the spot (yes he knew about the 911 incident too) and it was clear the hospice team was not managing to be the intermediate layer of care it was supposed to be. I was relieved to think someone would care for him, that they could enforce the pain medication as I could not, maybe offer better medicine for nausea (I’ve now discovered there is no more or better than the 3 I have), they could do their cruel INRs (they stick him) there. I drive him there and it’s 2 hours before a bed is available. We are treated as if this were a hotel and the room needs to be readied. He is so restless from sitting in the very uncomfortable wheelchair. He looks like Emma Thompson in Wit in the second part of the movie. Finally a bed, and a nurse one hour later. I go home after 10. My neighbor from across the street whose husband died similarly in half-agonies from the medical interventions and a “very bad” cancer, Pancreatic, came over and talked to me. She shared similar experiences and urged me to visit her when I needed to. But she didn’t want to come in. Maybe I’ll go on Sunday afternoon — I’ll see for then I have to leave him.
Today disillusionment if I thought someone was going to help him for real. I know they can’t cure the cancer, they can’t even lengthen his life much without shooting him up with poisons, but the truth is they can’t or won’t help against the pain much or nausea without konking him out — as the liver cancer is (they say) in such a bad state. It’s such a central organ. Like the first time in hospital I had all sorts of visitors including a doctor, another now head Hospice nurse and Hospice manager who pronounced themselves an other intermediary palliative team. They did try to talk to the Admiral and ask him what he wants and examined him. He couldn’t talk much but I was able to explain what he meant (and he nodded each time). Then (as I now look back on this) I was subjected to 45 minutes of talk separately. It was emotionally exhausting. It seems the hospice people are said not to be doing their job right and we have to change that. Miscommunications, misfitting types were adduced. I was tempted into opening up and pouring some of my distress and soul out in front of them, but the doctor did say he would provide pain medication for enough time that the Admiral would see it could do good and yet once he got used to it, he’d be as clear as his illness would allow and would accept the regime. It’s not true as later in the day I was told the Admiral is coming home tomorrow. That’s not enough time. Then I was told by one nurse her prognosis — a similar one Elizabeth gave me and whether true or not (very short time-frame) I begin to realize this is in her interest to say that, to get me to accept this situation and perhaps change my behavior to be much more convenient to them.
For it’s me who is phoning both the death track (hospice) and giving the life track people (hospital, medical centers) a hard time to do something, bothering them. They all want a situation where I stop this. Later that afternoon I was visited by another hospice team leader who took down all I said, and said, she would change our nurse, no more chaplain and send a full-day nurse the first day home.
In a way I’m thinking I’ll do what he said he wanted by Dr Pereira Thursday before putting the order in for the Admiral to go to the hospital: he said he was “not sure.” And then: “Just stop.” “I want all this to stop.” Dr Pereira appeared not to understand. I said he wants all these medical annoyances to stop, for this is what they are for him in his state. More: he wishes like I that we had never begun with you people. I wish on April 28th when we had been told he had esophageal cancer, we had got on a plane and gone to Europe. We would have had 5 weeks of joy to remember ever after. Instead he’s got a ruined body and has at most had one good (if compromised) week since May. I said, “We should have said fuck you, and fuck off.” I know I conceded we would have ended up coming to you for help but maybe he would not be in quite the bad shape and distress he’s in now after all he’s gone through. (Gentle reader, I now loathe Dr Fortes who I feel was not candid or didn’t emphasize sufficiently if he mentioned it at all the 30-40% metastisis into the liver. Fortes harmed the Admiral — Jane Austen was not harmed by her physician when she had her lymphona form of cancer.)
When he comes home tomorrow, if he doesn’t want to eat, don’t. If he doesn’t want pain medication or wants to take it in whatever way he wants, fine. Anyone phone me to bother me because they fear suit I’ll tell them if they call again, I’ll hire a lawyer as I smell a possible suit. Not because I’d do it, I probably wouldn’t but to make them go away by not going along with their barely concealed hypocritical motives.
Meanwhile in his room the nurse assigned to him ignores him. Marissa her name hardly ever goes in there; she is ever hurrying off to order this or get that, or be on the phone about stuff for him. But be near him, forget it. in the previous hospital stay he was the darling of the nurses. Now they all shun his room. The nurse attached to the room never made eye-contact with me. She would not even put salve on his lips. After an hour of asking her for this, another nurse came in with a cup of it and ran off. Oh I saw Antabili for a few minutes, what a waste; this was her afternoon in the hospital, and she spent it at a computer for hours; she stopped by to remind me argumentatively she had said and done this and that so as to make it clear her authority had not at all been diminished. A dying man in a bed nearby was forgotten.
He is there more than one realizes — his alert consciousness. When I went over to say goodbye and ask him to forgive me for leaving he seemed to half-open his eyes, and say he heard, and “it was okay,” and he smiled at me the way he sometimes did. Affectionate. He knew I couldn’t do him any good there. He was never a false sentimentalist. He is acting this way to conserve his strength.
I finally left at 5 to get home to Yvette so we could have a decent meal and talk together, and be with the cats who have become upset with all this. They now stay in a different room from the Admiral when they used to love nothing so much a to crawl all over him and sit on his lap. They stay away from me too sometimes. I found (very unusual) two bowel movements on the floor near the litter, but not in it.
What I’m looking forward to now. Bringing him home with me and however sad his state, keeping him here.
I write this blog to expose as much of the truth as I dare about a real case of cancer and how the medical establishment treated it in the hope people read and circulate it (and the earlier ones in the archive “cancer treatment & progress”). Let this be my humble contribution to the literature on how sickness is treated and experienced in the US. I spent one-third of a term for 33 terms doing all I could to assign and discuss intelligent materials about how medicine is practiced and experienced in the US today. I grieve that I now have a story to add, but add it I will. A friend who reads this blog: “I have found that the way to bring it to public attention is to talk about it – to be honest about what it all means. So many cancer patients are painted as ‘brave’ and ‘noble’ that the realities of the illness and treatment are lost to the heroic narrative told.” I’ve written always — whatever topic it is – that to tell the truth does help. It wont set us free, it won’t change human nature but if you don’ begin to expose what really is how can you begin to change it for the better. And some things can be made better — powerful people can turn improved behaviors around to make a large profit for themselves so the fight is perpetual. As to courage, I hope I have shown how brave my husband has been and how fine and noble his character.
Gentle reader, it’s more than we are in the “middle ages” when it comes to this disease, and people are ignorantly tortured and ruthlessly cut up (and big fees pocketed) in an effort to help them. The medical community is one only in their efforts to protect one another; after a time as this is their job by which each person makes money they pick up the ethic of self-protective guarded decency and follow the route which shaped by the reality that each transaction (patient, pill, operation sold) is a possible profit or not cost-effective.
Sylvia
Under the Sign of Sylvia II 
PS. As this is a separate issue but elicited from a kind intelligent friend, the first valuable reply I’ve had about hospice care, I put it in a note to the blog.
I had written to my three list-servs: “I know I shall sound an unusual note here,
but I don’t find the hospice people any comfort. The nurse can help with pain, but she will not give concrete answers lest she be held to them (I mean when I ask if there is anything short of a JTube we could resort to to feed him, she says “A wonderful question”). We have a phone number to call in case of need — though I’ve found it’s not as direct as they say and it takes time for a response and then sometimes it’s useless. As to the others who’ve visited since they depress me. He showed no comprehension of anything I said: I talked briefly of the medical system, and he trots out a fatuous “capitalism” (he’s got my number as this liberal); he’s astonished anyone can be a “real atheist, ” cannot be.He saw my Nuland How We Die book and made what was the closest thing to a sincere tone he had: he sneered: “oh physiological death.” I didn’t reply the book’s been translated into 29 languages. he called something Kafka like possibly because he’d heard of this author. He ended his visit with “God is good” — he couldn’t be talking to me. I don’t fight back: I didn’t say in response, how dare you say that to me whose husband is back there in great pain because natural forces of one kind (cancer) have won out against the other meaninglessly. Or do you mean God punished him that way. But that would get me into a dialogue with him, and that would as useless as talking to the dense Elizabeth or the nurse.
Perhaps they are best when the person is dying. It would probably be helpful if there are others out there who have felt the same — if so, off list comments are best.
One person replied, and I quote just a few lines:
Yes, hospice exists in a golden glow … Hospice is–can be–good at the very end. I am leery of hospice, however, … They are there to shepherd people out of this life–that’s what they do–but they are not so great in other roles …. [he had seen] bereaved men sob to me inconsolably over the phone about not being able to get the hospice worker at the right time, the hospice worker doing or saying the wrong thing, etc. Since they are there to help people die, they can get impatient, truly without meaning to, when people don’t die, because they can’t do their jobs under those circumstances …
One of the cruelties of the medical system we live under is the two tracks–the life track and the death track. In the life track, the insurance companies still pay for life saving (potentially, even if there is no hope) interventions; on the death track you get hospice, which includes, supposedly (and usually) tender, loving care of the whole person. The life track means they do treat and try to cure the body but are not obligated to treat the body as a full human being. In a better world we’d get both at once, not have cruelly to choose.
He thought someone who is comfortable with atheists ought to be made available; “It’s unconscionable that a person’s religious preferences not be respected at this time.”
Me: “You’re right. They are the wrong group for us right now. The nurse kept asking him if he wanted chemotherapy — she was almost urging him to forget it. One of them told me he had 3 weeks to live. He’s still fighting for life in his way.”
Another person called them “ghouls.” Me: “Ghouls is right. My aunt Barbara told me of how a chaplain came into my uncle’s hospital room after he had open heart surgery and spoke “condescendingly to her and ignored that she is Jewish. It was best thing I heard all day when she said my cousin, Mark, her son, came and threw the guy out. ”
There was remark that those surrounding the dead so praised hospice people because these upset people were grateful for any humane treatment.
Sylvia
Again on hospice care from the angle of where they come from and their function:
My friend: “They’re a front for the hospital industry that doesn’t want to deal with the emotions and humanity that go with dying — that these are — you are — real people and not units in the production line, so they hire hospice and chaplains — the cheapest way to offload these issues.”
Me: Indeed. Was it the medical industry that wanted medicare to cover it? Who lobbied this into effect? Kaiser covers it and so do many health care plans. I expect the funeral industry too — theirs is a competitive business.
My friend: “Probably both industries benefit. It’s not about compassion, it’s about profit. We get professional compassion because on the whole it’s less of a drain on profits than letting grieving people run loose, bothering highly paid doctors and upsetting hospital routines. From the profit perspective, the creation of off-site hospice was a stroke of genius.”
So the admiral was not so off base when he said immediately the first hospice woman left he didn’t want them, voiced suspicions and himself threw a social worker out for not answering: “what was her purpose here?”
Sylvia
In addition to everything else – how sad that the poor little cats are so sad and upset! Ours were, just from my going away for a week (Marshy pooped in the empty place where I’d kept my suitcase while packing), so yours must be completely frantic with all the comings and goings, panic and movement, and groups of strangers tromping through the house. Hopefully when Jim is back home resting quietly the cats will settle down too, and be some comfort to him. They at least have no profit motive.
Ellen … my heart is heavy and so sorry you and the Admiral are going through this. I do recall going through this when my mother was diagnosed with lung cancer. She would seem to rally when she was given infusions but became dehydrated after chemo treatments then we would have to call 911. When I asked the doctor about doing the chemo treatments vs. not doing them so my mother wouldn’t have to go through this I could never get an answer. All I felt was it wouldn’t really make a difference and shouldn’t she have comfort and enjoy each hours rather than getting sick from the treatments. Towards the end she told me that dying wouldn’t be as bad as getting treatments. I have to agree with you that the doctors, nurses, hospitals, etc. are more concerned about being sued then caring for the patients and their wellbeing. Hugs, Kayla
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Thanks for sharing your blog post. Very intense and difficult experiences…..Danielle Ofri
Although the profit motive was less obvious here in UK , the emotional distance and lack of care from the “caring professions” as they are known here, was similar. Their lack of interest and ignoring Alan’s concern about his pain led to them diagnosing his prostate cancer too late, after it had moved into his bones. 11 months wasted on treating back-ache! I do hope yo are able to obtain some pain relief for Jim and that you are both enabled to have some good days in the time ahead. The cruelty of the system and the suffering you have both had to endure wrings my heart. I shall be thinking of you and hoping for,some respite for you both. All my love to you both.
Eleven precious months. This is the underlying story in an attempt at exposure of the medical profession worth seeing: The Doctor (starring Wm Hurt). No wonder they actually tried to accuse you of cruelty and indifference to him. In the US you could try to sue, but probably fail.
I phoned Fortes today to tell the results of his surgery; he was out for the weekend, but much to my surprise the message was copied out full, and soon after I got his partner, Kandeep who was all concern and sorrow — though spoken as if I had had some minor mishap: “sorry to hear about this trouble …”
I had just left a message for the surgeon in an answering service. I didn’t think they’d be indifferent but he was much nicer on the phone than I expected. He reiterated “they did the right thing” to do surgery first, with the information we had, it was right, and said statistically the same percentage of people have recurrence in the liver whether you do surgery first or chemo. He would say that though. And he reiterated what a nasty (aggressive) cancer esophageal is — now I’m told pancreatic is fierce and aggressive. The woman across the street whose husband had pancreatic told me (of course but I forgot) once his pancreas was removed he had a terrible strong case of diabetes. That caused a cascade of complications. He had 2 operations and chemo and nonetheless was dead inside 10 months. He was 66.
There’s an argument anyone over 85 don’t follow their advice but go on a trip first thing — or whatever you love to do.
Yes, I agree Ellen. Alan was 86 when diagnosed and they wouldn’t give him the most effective treatment. If I had my time over, I’d have taken the painkillers and taken him on a long trip to Germany and Italy, both of which he loved.
John R: “I am so sorry you are going through this. The medical system has become so corrupt that, instead of improving lives, it destroys them. The natural drug for pain and many neurological problems is illegal, not because it might be ineffectual or addictive (it is not), but because it doesn’t make money for the pharmaceutical industry. I have talked to a number of doctors who regret that they ever went to medical school. Our neurologist told me that there are bogus illnesses created by the pharmaceutical industry so that the industry could provide “cures”.He also told me that he cannot prescribe many drugs that do work because he knows his patients cannot afford them. It is a shame that we live in a country in which there is no compassion and the main purpose of medicine is to generate profits while avoiding lawyers. I have no answers for you and Jim, but you are in my thoughts.”
Shocking, horrible. I believe it as I know a number of compounds which help acne are not sold in the US because they are too efficacious; you can get them only in Europe. I can’t quite believe we don’t have enough primary cancer research because the medical community makes so much money on anti-cancer measures but I do believe that the environmental movement shows its weakness with the lack of use of the spread of these malevolent (100 there are) cancers everywhere.
You say this is the state of medicine in the U.S., I must add that it is the same in Italy. I had to go through a similar misery with my father when he had a stroke and I did hire a lawyer, unluckily, the judge was slow and I won the suit on the day he died. Great graciousness, the irony to it. As you said, their main interest is to protect one another. The doctor who killed my father is now the director of a brand new association: doctors & lawyers united. On the other hand there are still lawyers who are not corrupted. Let’s hope. Also because sooner or later we all get sick. I have been sleeping since yesterday morning because of a tooth infection, and as soon as finish this, I will go back to bed. See what these antibiotics do!
A big hug,
Oh we had a terrible experience with hospice, terrible: the one with the huge diamond who asked my sister if she thought she’d come back as a ghost; the one who corrected her on how to tell the 5-year-old daughter she would die. (“Tell her your body’s broken; children understand that. Toys break and we throw them away….” Oh, yeah, lady, we’re going to tell her we are throwing her mother away.) We told them we wanted a nurse once a day PERIOD and sent them packing.
I think of you both each day and hope each day, despite all these horrid people around you, you find a space to appreciate each other, the gifts you have given each other, the gift you have each been to each other.
Thank you for saying this. Someone has to break the false depiction of hospice care. Numbers of them in the hospice business seem to act not out of pressure but to spare themselves the agon they are supposed to alleviate. I have now had three top Hospice women (who re-engineered our new and improved hospice care starting tomorrow) put their faces in mine and tell me if they were me they’d not do chemo as he is only going to be made miserable.I ought to just let him die — and he wouldn’t last more than 2-3 weeks at most. One today told me, “of course the doctors are not going to say this …” What she dreads is that once again the Admiral and I will make trouble for her – what happened was that I just didn’t acquiesce quietly. Caroline told me she would have gone ot the emergency room. Talking to others, I realize those not in say the last three days but considerably before that don’t call, suffer on with less help.
It is true as one of them said to me (these three top Hospice people, all ex-nurses) that all the doctors have done has been useless so far, really for the present moment made things worse. Had we left gone in a 5 week trip with all the pain medication we could get we’d have had that to remember; now we have nothing – maybe two happy weeks when we deluded ourselves, not realizing (in my case) the metatasis to come was 30-40%. One doctor exaggerating the Mets quoted 80%; if that were true (it’s not), to do such an operation would be criminal
I shut the last one up by asking Jim did he want to start the “port” chemotherapy and the answer came distinctly “yes.” He’s not ready to die. And I’m not ready to not to demand help.
Yes it’s understood no fatuous chaplains, no social workers with addresses of funeral parlors, no useless offers to help the Admiral shower — just trained nurses who will answer questions for real, not offer pressuring advice.
I have noticed a style of dress among them as I said. Left-over 1950s. Big diamond rings are all the rage, tight skirts too — they are not on the wards after all.
I feel my heart contracting a little as it learns the truth ever time I read Sylvia and then expanding again when I see the love of friends and the warmth of their understanding in the comments. Ellen, I think about you both and yet know this is of little practical use in your journey. I couldn’t tell if the Life track and the Death track comment was Sylvia or a quote – very meaningful and insightful. Somehow we need to align the Life track and the Death track and recognise they are the same journey. Only love and compassion can unite them and whilst the medical system is underpinned by money and litigation they will remain separate. There are loving people in the medical system and allowing them the space to practise this, the greatest palliative art, is not in a money-driven remit. Oncologists who care do exist and work so many extra unpaid hours as they invest the greatest time in simply listening and empathising and dispensing truthful, informed wise words to patients and their devoted carers. Even the most emotionally clumsy of paid carers has that love and compassion within them and seeing your love and care for The Admiral must release some of those finer feelings. Most of all give my love to The Admiral and tell him your friend in Australia cares for you both and admires the bond between you.
Ellen, My heart goes out to you both. Your horror story and those in some of the blogs are an indictment of a system that is over technicalized and that separates the ill from their “care-givers” The disease and its “cures” are horrible enough without the overlay of multiple callous medical specialists each dodging responsibility and making you be the manager of care. For-profit medicine is an abomination which (so far) we are spared in Canada. My own case (and those of my sister sufferers–we’re quite a sorority here) despite some mistakes, fortunately not lethal, has been handled with care and empathy.