Seanty's experiences with Metastatic Malignant Melanoma.
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Results are in, CT scan was clear. What was also clear is that my local hospitals are rubbish at working together, they both claimed it was the other one's job to help me when push came to shove. I'm going to drop the Prof., as his performance was the most disappointing of the two, and the other hospital is more local (though uncaring, incompetent and unprofessional). What a shower!
The Prof. called me at 6:30 PM (to give me the results of the scan I had arranged for myself, and had already arranged for someone else to tell me that morning, as he had ignored the four messages I left for him), so I got to drop him in person. He confirmed that he had thought that there was a fair chance that my MM had returned, but said that if it had, what's the rush, it wasn't like it would make a difference to the outcome. I paraphrase, but that is what he said.
I refrained from saying "well, it makes a F***ing difference to me". But it does.
Labels: nonsense, psychological, Skin Cancer, stress
Personally, I like action. I'd far rather be struggling with the indifference of the NHS, or even having treatment, however unpleasant, than being in the limbo of waiting for results.
This is one of the things that drives the use of alternative medicine-quack diets and so on give you the ability to think you are treating yourself between treatments. It's seductive-even I sometimes find myself considering cutting out the dietary components which quack diet books recommend, taking vitamins and so on. This is even though I know that the balance of evidence is that some of these recommendations can actually promote the growth of cancer.
The indifference of the medical professionals to your emotional reactions is another factor. I wouldn't fancy their job, telling five people a day that they are screwed. It's got to harden you, and fair play to them-you don't get to be a professor of medicine on the basis of your extraordinary niceness. Neither is empathy desirable in a surgeon, whose job it is to slice people up every day. Once there were relatively untrained nurses who did the hand-holding and arse-wiping, but now it's becoming an all graduate profession, most nurses think of themselves as a sort of doctor, too busy for the menial and emotional work. No-one offered me a wash in the week I was laid up in hospital after my lymph clearance, and the only nurses who seemed to care at all were the foreign ones, most notably Filipinas.
So I understand why the experience of cancer treatment leads people to look for comfort and a feeling of control wherever it is available. There are some exceptional people who are willing to provide this without strings, but there are many who offer help to promote some agenda. Essentially all of these agendas are religious in nature-abandon rationality, and we will help you to feel better. This is in my opinion why so often once a person is sucked in to a "cancer-fighting diet", they start to proselytise for it.
What makes this tricky is the sliding scale. Research suggests that cancer patients should follow the standard dietary recommendations, unless instructed otherwise by their multi-disciplinary team. But every internet post I have ever seen which talks about "healthy eating" is actually talking about something else. The thin end of the wedge is the Bristol Diet, which modifies the research based dietary advice based on ill-founded vegetarian propaganda. Then we have the Plant Diet
, based on vegan propaganda- starting to get a bit dangerous now. We can go all the way up to diets which can prove fatal, like Gerson
Each stage prepares the patient for the next. Even at the earliest stages of the journey, the initiate is exposed in passing to paranoid conspiracy theories
which prepare them for the next leap of illogic. So when I take a hard line with people who are just starting out, who are doing things as well as effective treatment, rather than instead of, understand that if we don't stop them before they get on that slope, they will become immune to reason. When I take a harder line still with people who are already turning down conventional treatment, it is because I know that people at that stage will recruit others to their folly without the very strongest discouragement, as reliably as if they had been converted to the Moonies rather than the Gersonites.
Labels: Alternative, conspiracy, Gerson, Medicine, Plant Diet, theory
With a large number of phone calls, (mostly to people who were more concerned with making sure doctors weren't bothered by patients than helping them) I have managed to get my CT moved forward to tomorrow, and my consultant appointment moved to Monday, shortening my wait for results by more than two weeks.
Too much of the NHS is run for the benefit of its staff: my local hospital, (still apparently bearing a grudge from back when I insisted on an SNB against their recommendation) refused to help. They threw me off their books for this transgression, I only sneaked back on through the help of their specialist nurse. They aren't good, but they are local...
My slightly less local, but supposedly slightly better University hospital have also been dreadful. When I asked a question about something on my X-ray, I was given the answer "because that's how X-rays are", querying which resulted in repetition of the answer only slightly louder and clearer. I teach at the University this hospital is attached to - "Because" is not an appropriate answer to give any adult! The professor's secretary offered to get him to call me about a question I had twice. No call both times.
My big, anonymous London hospital bears no grudges, and aren't too small or too grand to give me an immediate appointment, though they don't always answer the 'phone, or remember what they told you.
Local hospitals made it quite clear that they think I'm trying to queue-jump, and my doctors won't even talk to me. Won't even explain to me why if the Prof. says he's worried, he's not worried enough to get a test done in less than a a month, let alone being able to deliver on their promise of getting the apparently God-like Prof. to call me personally to explain or set my mind at rest. I speak to Professors every day- what's so special about this one? Grr.
GSK's "me-too" BRAF drug is showing great promise
. Now there are three drugs which look far more effective than the (hardly effective at all) DTIC which has been the only approved drug for so long. May we all live long enough to not have to fear recurrence! Of course, this is all the more reason not to go the alternative route.
In an unfortunately related issue, I managed to get my CT scan booked ahead of schedule, but the oncologist will not move my appointment forward. Must be nice to be so relaxed about the issue.
Labels: BRAF, GSK, Trial
Got a dodgy chest x-ray today. Have to wait three weeks for CT to see what's up. Bugger.
Another well-meaning advanced MM patient is plugging Gerson to their fellows, this time on Marsha's Melanomates Facebook group
. Though its promotion by the desperate and the deluded has never lessened in the four years or so since I was diagnosed, not a single paper has been published in support of Gerson in a peer-reviewed journal, just like in the preceding fifty-odd years since Gerson dreamed this scam up. Gerson is still nonsense.
Labels: Gerson, quack, Therapy