Holistic treatment for bladder cancer – provided by the NHS

I met up with an old friend from university recently.  He’s called Richard for the purposes of this blog.  I hadn’t seen him for a few years.  He told me his girlfriend had had bladder cancer. I know this blog is largely read by clinicians who love a bit of case history, so here follows a quick synopsis of what he said,  unreliably remembered from a slightly wine-sozzled evening in an Indian restaurant in Camden High St.  His girlfriend, “Vicky”,  had a couple of years of “strange spasms and crampy feelings” when she went to the loo.  She made several visits to the GP during this time, who eventually decided it might be worth investigating and booked her in for a scan.   One day, while still on the waiting list for the scan, she was in so much pain  that she spent hours in a scalding hot bath trying to relieve it, and when that didn’t work she staggered into the street and hailed a taxi to take her to A and E.  (Now there’s someone who doesn’t abuse the ambulance service.)  She got to hospital, was given heavy duty pain relief and then was given a scan.  The clinician peered closely at the image, beckoned a colleague in, and in a short period of time a bunch of people were having quiet and urgent discussions in front of the picture. A tumour was diagnosed, and only hours later she was in theatre and the tumour was removed.  My friend was asleep during all this, due to the fact that he was, glamorously, on a business trip in Seattle.  He woke up to find his girlfriend had taken herself to A and E in agony, had been diagnosed with cancer, had been treated for cancer,  and was cancer free, all at once in a series of text messages.  I like to think this was over a coffee in Starbucks, or at least looking out over the Seattle skyline like the view from Frasier Crane’s apartment.  So that was the story of Vicky’s cancer and its cure.  All’s well that ends well, you would think.

But no, that was only the beginning.  There was obviously some follow-up care.  And the main part of this was an innovative procedure  designed to discourage the cancer from returning.  This involved a series of  live TB injections into the bladder.  (Yes, TB as in ‘tuberculosis’ – this muggle medicine is truly fascinating.)  Well, this seemed a great new treatment, and my friend Richard was very impressed with the way the consultant took time to explain it in detail, to both of them, and I’m pretty sure Vicky would have given thoroughly informed consent. But unfortunately, she had an unusual and pretty diabolical reaction to it.  I didn’t pry into all the details (intimate areas and all that)  but not being able to work was one of the results; not being able to live alone was another;  many weeks and months of not actually being able to walk from one room to another due to the agonising pain was another. Mild dehydration could bring on truly appalling suffering. He described how once on a visit to his parents in Surrey, she hadn’t drunk enough water and ended up in such pain that she was writhing around on the ground digging chunks out of the lawn with her bare hands.  They had to call out paramedics to administer on-site morphine injections.

As we moved on to talking about my life, I was telling him about this blog.  “The NHS have really taken holistic medicine on board now”, he told me, “Vicky’s treatment was very holistic.  It was great”.  Now, every bit of this statement was a surprise to me.  Not only did the whole live TB/ morphine/scan/surgery not sound in the slightest bit holistic, Richard is really a science geek.  He loves statistics.  He loves vaccinations. They make him feel secure.  He doesn’t understand why we still bother with vaginal births when C-Sections seem so much more “efficient”.  He studied experimental psychology as part of his degree, studying rat experiments and going to tutorials in a building where one floor was inaccessible from the lift due to the threat from anti-vivisection protestors.  He went to a cranio-sacral therapist once, despite having no symptoms or aim for the treatment beyond “testing it out”, and announced to me that it was “hocus pocus”.  I’m not sure what he expected – to come out with powers of invisibility, or find he was four inches taller, maybe?  He loves illustrations from science textbooks and when he had aspirations to be a fine artist he planned to make giant photo realist paintings of them.  He likes Ben Goldacre.  His mystical side, which is there, is mostly expressed through his fascination with scientific processes and space exploration, and in our youth we were excited to find the entire series of Carl Sagan’s Cosmos available to borrow on VHS at Swiss Cottage library.  I sat through many a hungover Sunday morning watching zany 70s graphics of planets and galaxies while Brian Cox’s spiritual forefather loomed out of the screen at us with his big eyes and wondrous  intonations as he pondered the existence of extra terrestrials.

In what way, I ventured with interest, was it holistic?  I am genuinely intrigued to know what people do mean by holistic.  It’s one of those words, isn’t it, like artisan.    You know what an “artisan” cafe is going to be like, just like you know what a “holistic” health centre is going to be like, but you might struggle to say what the words really mean.  Well, Richard immediately started talking about a “continuity nurse”, and this seems to be what holistic meant to him.  It turns out that they were assigned, at some point in the “health journey”, (my new favourite phrase), a nurse called, “Tom” and this one person was a point of contact.  Yes, they had been provided with a person to speak to.  As Richard started talking about Tom, he actually looked happy and animated for the only time in the whole bladder cancer epic.  Tom was great.  They had got to know Tom really well, they had got to know all about his partner too, and heard all about their efforts to find a flat. I think Richard might even have been involved in the move, chucking things into the back of a transit van somewhere in South London.  Apparently Tom would phone up, and tell Richard to “pass on my love, and tell Vicky what a brave bunny she is”.  It didn’t sound like he performed any treatments, or provided formal counselling, or even had many professional boundaries.  It sounds like he was just, literally, someone to speak to, who they happened to get on really well with, and who perked them up and made them feel less alone with their suffering, and this was one of the only positive and happy parts of the whole illness experience.  Whether it affects cancer or pain outcomes, who knows, but it did seem like Tom was a ray of light which helped sustain these two through a really bad time.

Skeptics are fond of saying that the benefits of CAM therapies are solely down to the empathy, compassion, time and care that we provide – and they seem to think that this nullifies what we do. I’ve a few things to say about that:

  1.  Our techniques and treatments work better than they think, but the fact they are embedded within that therapeutic environment sometimes enables them to work in a way they might not if administered in a clinical and isolated way.  This is why simplistic thinking such as trying to isolate whether a particular technique works for a specific condition  (for the sake of argument, HVT of T4 for headaches) by doing RCTs, then teaching it to GPs to use for patients with headaches, is not going to work and would not render manual therapists unecessary or redundant.  There is an active  ingredient, but it might be that it doesn’t work in isolation.
  2. Many of the conditions that we treat don’t have any standard, RCT-level  scientifically proven treatments, and people end up being expected to “live with it”, so what do you then?  If you can’t find a clinically proven treatment to put at the heart of your caring relationship, do you just abandon any attempt at helping someone?  Do you tell the patient to go home, give up trying, and have chronic tension headache and a prescription drug habit for life?  This seems to be what happens a lot of the time.
  3. Often patients need a combination of things, uniquely tailored to them – lifestyle advice, physical therapy, a person to speak to…  I would be delighted to find this service generally available through the “orthodox” route, but it’s not there yet.   The NHS might provide the “continuity relationship” for a cancer patient, but try getting a “Tom” experience if you have insomnia and chronic sinusitis, or  rotator cuff tendonitis and a bit of IBS.  And yes, it’s a shame that only people with enough money can get that high level care.  It’s not fair.   Physical comfort and emotional wellbeing are easier if you can afford the support you need.
  4. CAM therapists are meeting a genuine need which mainstream medicine does not, and maybe cannot, meet.  I didn’t go to an osteopath with my bad back all those years ago because I’m a half-brained, suggestible flake who can’t read a research paper and fails to realise what an idiot I am.  I went to an osteopath because after several years of being dismissed and  patronized by GPs who didn’t have a clue how to help me, I thought I’d take a risk and try something that had worked for people that I knew.  If the level of empathy, compassion, physical treatment, understanding and advice that I found had been available on the NHS I would never have looked elsewhere.  It might help if skeptics, (who I genuinely hope will drive up standards and rigour in CAM therapies), began also interesting themselves in looking at the deficiencies of the mainstream healthcare system, if they are so convinced that our empathic and  compassionate approach is responsible for our good results and popularity with patients.  If they genuinely wanted to get rid of CAM therapies the best way to do it would be to provide for people’s needs within the orthodox system.  That’s what people positively  looking for a solution are looking at.  For further ways to  help I would direct them here and here.
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4 thoughts on “Holistic treatment for bladder cancer – provided by the NHS

  1. Penny,

    I always enjoy reading your posts – thanks for taking the time to engage with difficult subjects and communicate so articulately about them. What an interesting story this is!

    Liked by 1 person

  2. Another excellent blog. This “holistic” notion is something I challenge with patients. And yes, they love the idea, but struggle to explain it.

    Like

    • Thanks for commenting. Yes I think holistic is difficult to put into practice, and often it just means “alternative”, but I thought this was a good example at least of how treating the person is such a help even if it doesn’t change outcomes.

      Like

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