Week 106 in the war on cancer has passed. Here are the highlights:
- Dyanne is in generally good shape. However, the stomach issues have continued, and she has stopped, at least temporarily, a number of the drugs she was taking “on the side”. This seems to have improved the stomach situation. The hope is to restart some of the other drugs, but slowly so that stomach issues can be kept at bay.
- There was a debate about cancer policy here in Oslo organized by the newspaper Aftenposten. The newspaper have spent months digging up stories about Norwegian terminal cancer patients travelling to a clinic in Germany that offers experimental treatments. Predictably, most of the patients had died despite getting the treatment which also turned out to be expensive. Aftenposten made a big fuss about these patients having been sold “false hope” and was even questioning if not such “medical tourism” should be regulated. Surely patients left to die by the Norwegian health care system should be barred from trying their luck with doctors outside our borders, right? Soviet.
- What was a bit ironic, and clearly illustrating the extraordinary bias in Aftenposten’s journalism was this: a young widow who was interviewed on stage, mentioned that they actually for a long time had been informed by the doctors here in Norway that her husband was treated with “curative intent”. It turned out, very late, that he was not. He was actually only getting palliative care. By the time he found out, he got desparate, did not have time to do much research, travelled quickly to Germany and died there. While Aftenposten made a big fuss about him having been sold “false hope” by this clinic in Germany, they did not make a fuss about Norway’s hospitals actually pretending there was a very good chance that he would be cured, when they actually were just offering him palliative treatment and new he was gonna die. That a few patients go to Germany and are sold “false hope” there (which they, actually, most likely are not – Germans are usually very straightforward about what they can offer and what they cannot offer) is apparently a big problem. That Norway’s health care system routinely (we have seen and heard about several similar case) give the impression to terminal patients that they actually may survive this nasty disease, well, that does not seem to bother Aftenposten’s journalists. False hope sold by Germans to a very few patients = bad. False hope dished out by Norway’s hospitals to the masses every day = not a problem.
- What was made abundantly clear at the meeting is that Norway does not have a single intelligent, caring and competent politician working on health policy. Our dear health minister was there and I spoke a bit with him. I tried to tell him that when he tells hospitals that the most important thing they do is to have “zero patients in the corridors”, then this causes all kinds of perverse incentives and terrible consequences in our hospitals. He did not care to listen and was quickly dragged away by an advisor. The only good thing that can be said about him, is that the leading health care politician from the main opposition party (Arbeiderpartiet) is even worse. He clearly is clueless. What a sad bunch of people.
- As I have mentioned for friends and family before: I actually think it is a lot easier to cure lung cancer than to fix Norway’s health care system. Hence I will do my best to try to stay out of fixing our health care system and rather focus on curing lung cancer.
- While we are on Norway’s rotten health care system, here is one example of how much the system sucks. We have regular appointments with Dyanne’s oncologist every second month. Before these appointments Dyanne always does a CT and an MR scan. The results of these are then reviewed in the meeting with our oncologist. Does our hospital manage to schedule these CT and MR scans? No. This is now the second time that they send letters inviting Dyanne to do scans a week or two AFTER we are scheduled to meet with our oncologist. I spent several hours this week trying to call people there and telling them that they need to reschedule. The reply? “We have no capacity.” The leading cancer hospital in Norway does not even manage to schedule simple CT and MR scans with two months’ notice. What a fucking tragic system.
A long rant, but I felt it was necessary (at least for my mental health…). On a more optimistic note, the video from the presentation I held at a seminar in Barcelona in July is finally now online. If anyone cares to see my 12 minute talk on how to speed up the cure for cancer, then go ahead:
And, finally, this coming week I will be going to this immunotherapy conference in Mainz, Germany.
Good Sunday evening to everyone!