Weeks 99 to 101 in the war on lung cancer have passed. Reason for not providing regular updates is that we have been on holiday. In this post, I would like to highlight a demonstration that will take place in Oslo on 28th August. But, first, here is a brief summary of the last three weeks:
- We met with our oncologist in Oslo on Tuesday 11th July. In short: the CT and MR scans look quite good. Here is the extended version:
- The MR scan still shows some area which is lighting up a bit. This is most likely “just” an after effect of the radiation and nothing to worry too much about.
- The CT scan was a bit more ambigous. First of all there was a new “nodule” in the lungs. It is around 1 cm in diameter and they were not sure what it was. Could not rule out cancer. We will monitor this, but hope, and believe, it is something else than cancer. The CT scan also showed some enlarged lymph nodes in both armpits, more pronounced in Dyanne’s right arm than left. These were investigated with ultrasound and a biopsy was done to check what they were. Turned out they were just normal lymph nodes, and the reason they had lighted up on the CT scan was probably that Dyanne got the vaccine in Germany the day before the CT scan was done.
- Dyanne has been in pretty good shape. However, she has had recurring stomach issues and, due to this, we have stopped tetrathiomolybdate for now (a copper reducing agent). We hope this will make the stomach issues go away.
Then to the demonstration. While we are on holiday, there are people who are woking tirelessly to improve the health care system of Norway. I am not talking about politicians, bureaucrats or doctors (I wish I was). I am talking about a group of cancer patients and their caregivers who are doing a tremendous job to help fix a major problem in cancer care in Norway: it can take ages before a new cancer drug with proven efficacy is offered by the public hospitals in Norway. The time it takes from scientists have done their job to prove a new drug is better than the old options until that drug reaches patients in Norway is, simply, way too long. The consequence? Lots of Norwegian cancer patients dying or having their lives cut short. The reason? A bureaucratic and slow system for approval of new medicines that our politicians have implemented.
Without going into details, the following parallel indicates how this system works: Imagine your house is burning and you call 911 to get the fire brigade to come rescue you. But before the fire engine can leave the fire station, politicians have made rules saying that the truck itself must undergo a detailed check-up to make sure it works perfectly. All the firemen also need to undergo a physical fitness test and a theoretical exam to prove they are fit and up-to-date on the latest fire extinguising technologies. Once all this has been completed, the fire engine and the fire men can drive off to save you.
As you may imagine, the process of dispatching a fire truck with such rules and regulations will be quite slow. And yes, in such a system, many people who could have lived with a faster response from the fire department will die. However, the bureaucrats responsible for this system don’t really seem to mind. They have set as a main target for the fire brigade to use less water, as they think overuse of water is a problem. The politicians also seem happy with the system. After all, water usage is under control and, well… dead people don’t vote.
If you think this sounds crazy and cannot be a good parallel to how Norway approves medicines for use in public hospital, you are, sadly wrong. People are dying – en masse – while bureaucrats, who have absolutely no skin in the game, take their sweet time and measure “water usage” rather than dead bodies.
If you think the above is outragous, I will tell you this: it is even worse. To understand how insane the system is, here is an added fact: if the fire station chief sees a major fire in some buildings just next to the fire station, he will not order his people to head over there and put out the fire. He will only do so if someone calls 911 and asks for it. Unless there is a call, the fire brigade won’t lift a finger. The reason? No, there are no good reasons for such a shitty system and such shitty people. These are just bad people and bad systems.
And the worst of them all is the stupid “health” minister we have here in Norway. Mr Bent Høie from the political party Høyre. I paste in a picture of him below. Take a good look. He is responsible for the pre-mature death of hundreds, if not thousands, of Norwegian cancer patients. I do not believe such impotent, incompetent, stupid people can be reformed. There is only one thing to do: to kick him out of his office and replace him with someone who cares about cancer patients and want to save their lives. The good news is that we have an election here in Norway in September. The bad news is that many cancer patients who got sick on Mr Høie’s watch cannot vote. Because they died. Because Mr Høie did not do his job and let these people and their families down.
If you think this needs to stop, then join us in participating in a demonstration that will take place in Oslo on 28th August. It will be a major event and the demonstration will be a wake-up-call to politicians of all stripes, including the impotent Mr Høie. The demonstration is organized by a tireless advocate who is in a similar position as myself: he is the caregiver of a wife with a “terminal” cancer diagnosis. Here you find information about the demonstration: Kreft-demonstrasjon: Pasienter dør mens politikerne somler! Please do join us on this day and make it clear for politicians in Norway that they either need to step up their act, or they need to find themselves other jobs.