Z might as well get the ranting out of her system. Sorry.

My mum was married for 22 years, widowed for 6, married for 10 and widowed again for the last 16 years of her life, 15 of them spent living here, in the annexe next door.  It was not particularly successful, she never adjusted to it, mainly because she felt at a disadvantage.  People were being friendly when they greeted her “You must be Zoë’s mother!” but she disliked it because she felt it made her an appendage to me.  She made her social life revolve around new Norwich friends on the whole so that, when I met them, I was Jane’s daughter rather than she my mother.  She had, of course, loved being a wife most of all and never stopped missing the married life she had lost.

The last few years were particularly difficult because she was unwell and, in addition, had a damaged replacement hip joint.  The damage having been undiagnosed by a very experienced surgeon who should have known better, she suffered repeated dislocations.  She went to various specialists who were unable to diagnose her illness.  It was concluded by everyone except her family and her own doctor that she was attention-seeking, had psychological problems, even that she was deliberately causing the dislocations and that, as she became thinner, that she was cutting out various foods because of faddiness and obsession.  None of this was the case.  She was difficult, yes, and she did become quite obsessive, but this is entirely understandable.  When you’re ill and you’re told you’re not, when a food makes you sick and you’re told you’re picky, when your hip dislocates, which is total agony and requires total bed rest and then recuperation with all the precautions of having had a new hip, yet it’s clear that the nurses have no sympathy at all (uncaring nurses are nothing new, there were plenty of them over twenty years ago and they are the dark side of a wonderful profession), it doesn’t do much for your peace of mind.  She became convinced all her problems were caused by abdominal candida (thrush) and told every doctor she saw all about it, ignoring my suggestions that she didn’t sidetrack them but let them come up with a diagnosis first.  It misled them, not into thinking that was what was wrong, but into the belief that anything wrong was in her mind.  Tests didn’t show the cancer already somewhere in her intestines, and they never tested for an ulcer, not until her last visit to hospital.

It wasn’t surprising that she turned to alternative health practitioners and she certainly received sympathy there.  She was paying enough for it, after all.  Some years previously, she’d gone to an acupuncturist for help with her migraines and he did help a bit for a day or two at a time, but  there was no cure and, at the start, he’d told her that, if it was going to work, they would be greatly alleviated after a few months.  So, since they were still as bad as ever except in the days after she visited him, she stopped going.  In those last few years, she tried practically everything else.  I’ve forgotten most of them, I drove her to Diss monthly for a couple of years but I can’t remember what snake oil she was being sold there.  The woman 30 miles down the A12 was a nutritionist and we went there for years, my mother coming away with small bottles containing things I’d never heard of, to measure out, drop by drop and take religiously every day.  She visited health food shops – the most dubious seemed to be liquid oxygen (because you apparently don’t breathe enough of it).  The most shocking charlatan was the kinesiologist who held her arm, said the name of a food and pressed the arm.  If my mother was unable to resist, she was allergic to the food.  Thus, she cut out most of the foods she had been able to eat.  Kind and reassuring was the reflexologist she tried last of all, whose foot massages at least relaxed her.  Then there were the healers, including a faith healer she sent money to.

Some of these people acted in good faith, but not one of them said she really should go back to the doctor, because she was getting worse instead of better.  I remember the shocked and sympathetic look on the face of the nutritionist, the last time we left her house.  She knew very well my mother was desperately ill and was sorry for her, but she still took her £35 for the consultation and sold her the little bottles too.  The reflexologist assured her she had a kidney problem and could be helped by the treatment, only a few days before she was diagnosed with her advanced pancreatic cancer, the secondary cancer that had developed from the one that hadn’t been spotted during many tests and that had probably been present for seven years.

Once it was proved she actually had something seriously wrong, she couldn’t have received more kindness.  The nurses in that ward were lovely.  And she had a wonderful last six months in the circumstances.  The only treatment was palliative – she had a stent fitted to open her bile duct, constricted by the growth on her pancreas, she had a blood transfusion and treatment for the ulcer.  She came home and became surprisingly well, weaning herself off her painkillers, able to drive again and eat well, though she wasn’t able to stand and cook and I prepared all her meals, as I’d often done anyway over the years when she wasn’t up to it.

You can see, perhaps, why it upsets me that she was never offered sympathetic professional help for the distress she was in, why I’m deeply sceptical about alternative health remedies that have no proven benefit at all, and about practitioners who keep taking your money without ever admitting that they’re not actually curing you or even doing much to alleviate the symptoms.  And the effect on me and my family was dreadful too.

11 comments on “Z might as well get the ranting out of her system. Sorry.

  1. Mike and Ann

    I think ‘not knowing’ must have been the worst part for your mother. One of our daughters ‘knew’ something was badly wrong for her baby son, and when he was finally diagnosed as being autistic, she told us that the sheer relief at ‘knowing’ what the trouble was, quite surprised her.

    Reply
  2. kipper

    Our vet does Western and Chinese medicine. I tried the Chinese herbs etc. for one dog and it didn’t help and was expensive.
    Totally agree with your viewpoint.

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  3. tim

    Kipper’s comment about vets rang a bell. Years ago, I threw hundreds at a charlatan who claimed massive vitamin doses could regenerate degenerative hip nerves in an Alsatian, and charged through the nose for the entirely ineffectual tablets.
    But that’s trivial compared to what your mother and you were put through. Diagnosis has improved massively since then, but it’s still intolerable that these self-appointed ‘curing’ people are still allowed to peddle their mumbo-jumbo, totally unregulated – and that our NHS still actually endorses some of it, such as acupuncture.
    Anybody who still believes in this chicanery should read this post.

    Reply
  4. nick

    What a terrible story. Terrible that she kept being fobbed off with bogus victim-blaming explanations instead of a proper diagnosis, and terrible that she was duped by so many “alternative” practitioners who just wanted her money. Diagnosis seems to be a very tricky business these days with so many possible illnesses to consider, but even so the doctors seem to have been especially clueless. I can see why you’re still so upset about it all.

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  5. letouttoplay

    I share your anger Z! It’s heartbreaking that older people were (and sometimes still are) treated so casually and that some doctors so easily assume that patients’ problems and symptoms are imagined. My mother collected repeat prescriptions for barbiturates and anti-depressants for a good ten years without ever seeing a doctor after the first few visits and there is no doubt in my mind that they contributed to her death at 50 years old.

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  6. Z Post author

    Even worse than not knowing was being thought to have caused or invented your symptoms. If she had done so, she would certainly have needed help for that, but it was never offered. I’m sorry about your grandson’s illness, I hope he’s not too badly affected.

    That was it, Mago, and I don’t deny their effect, but all it did was make sure she remained gullible.

    I’m not saying none of it has any effect, nor that natural remedies aren’t worth trying, but in general, the more dramatic the claims made, the less likely they are to be true, I suspect.

    She did have a lot of tests, but a small tumour in a lot of intestine is hard to spot. Where they went wrong was in assuming that, because the tests didn’t discover it, there was nothing to find. Her own doctor was wonderful – and he always thought she had cancer, he was right all along. I’m so sorry, Mig, it’s really hard to see someone going down the wrong route and not being able to help them stop. And that’s exactly the sort of thing I meant in my earlier post – though I hope that checks and balances are better now than they were a generation ago and no one is left to years of mindless repeat prescriptions of strong drugs.

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  7. Roses

    Yes, that is nothing less than appalling.

    I’ve had my own scrape with mis-diagnosis which had me in hospital on a drip, being treated for pneumonia instead of the depression I’d initially been diagnosed.

    When you know you don’t feel right and the symptoms don’t add up and point to any particular direction and you can’t trust your medical practitioners to listen, it’s the most awful and helpless feeling. Thank goodness your mum knew she had your support.

    Your mum’s experience with her hip is horribly familiar to me. After my mother broke hers and after several failed ops, it was finally realised that her femurs were dead straight, not bowed like ‘normal’ peoples’ which is why her replacements were constantly popping out. The effect it had on her quality of life made the last 5 years nothing less than a pain-ridden hell.

    You rant away. I’ll hold your coat and kick them when you’re done.

    xxx

    Reply
  8. Z Post author

    A joint dislocation is excruciating, your poor mum.

    A break from ranting for a day or two, I need to take care of myself and think happy thoughts. But I may talk about things that have been in my mind for a long time, will see how it goes. Blogging is excellent therapy, after all.

    Reply
  9. IndigoRoth

    Hey Z! This is a tragic tale that must have been hell for everyone involved, your mother most of all. When medicine fails us, I guess it’s natural to want to try other things, hopeful that someone has an answer. But like you say, most “panaceas” are snake oil. The medical world has a lot of respect for acupuncture (some GP surgeries even offer it), and thankfully osteopathy is recognised as “real” medicine these days. But even those have attracted some of the wrong practitioners, more interested in income than outcomes. I don’t know about all the others, but I’m sure there are many who sell false hope at high prices, and take advantage of the desperation of people who are simply sick of being ill. I’m glad your mum finally got the right diagnosis and the help she needed, even if that was just to be comfortable and treated with dignity by folk that cared. Indigo x

    Reply

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