Week 105 in the war on cancer has passed. Dyanne has been in Germany to get new vaccine injections. And she is generally in very good shape. Some stomach issues still, but nothing too bad.
We have now passed 2 years since the war kicked off in ernest. Dyanne was diagnosed with stage IV lung cancer on 5th March 2015. The first few days and weeks were dark. But we slowly started reading up on the disease and treatment possibilities. Gradually we became convinced that it was possible to do more than to just accept certain death and “enjoy our last few days together”. It was possible to try to beat this disease. It was possible to connect with likeminded patients and leading researchers and doctors in the world and come up with treatment ideas which both were possible to implement and, if one is lucky, just might work.
Thus, when we were told Dyanne’s cancer was growing again after only five months on the first line treatment, we took the plunge. We decided to go all in. We decided we were not gonna listen to the doctors who said “the best thing you can do is to follow the standard treatment and try to enjoy your last days…”. None of us believe in God and, frankly, some doctors are about as unconvincing as him. We decided not to believe them and rather believe that where there is a will, there is a way. One day this nasty disease will be conquered, and we will do whatever it takes to be present on that day. And thus we went to war. And as every war needs a declaration of war, we also notified our friends and foes of our intentions in the following facebook post on 23rd August 2015:
The next day we were on a plane to Barcelona and since then we have been many places. We have met some amazing doctors and scientists. And we have connected with many patients who are, like us, determined to beat this disease. Together with them, we intend to outfox cancer hang out on this planet for at least another 30 years or so.
It has not always been a walk in the park. We have had challenges we did not know if we would overcome. And we have met people and systems who were not exactly helping us. How many people I have pissed off, I don’t care to count. Laws have been broken too. And, judging from a letter I received this week, laws will have to be broken in the future as well. If Norway will not give us drugs we think can save Dyanne’s life, and if Norway makes it illegal to import those drugs, well, then we will smuggle. We have done so in the past, and it seems we will have to do so in the future too.
What is one to say about a system which makes cancer patients fighting for their lives into criminals? Well, frankly, not a lot of good. And tomorrow we will be yelling out our complaints about this system. Tomorrow (Monday 28th August) there is a demonstration in Oslo to push our government, as well as the current opposition parties, to speed up the approval of new, life saving, cancer drugs. The current situation, with very slow approval processes, is unbearable as it means lots of patients die while the government goes through the obstacle course it has constructed for itsel. A large part of the problem with the current system is this: the key stakeholders included in the approval process have perverse incentives. They have, unfortunately, every incentive to slow down the process and let patients die in the waiting room.
A better system is possible. Norway anno 2017 is a nation capable of fast and efficient approval of new medicines. What is missing is the will from our leading politicians. For too long they have not only forced cancer patients to become criminal smuggelers, but they have ignored the problem altogether and let cancer patients die. Tomorrow we need to give them a very clear message: cancer patients are no longer willing to die quietly. If they don’t want dying and crying cancer patients on their door steps, then they have to up their act and fix the damn problem. Where there is a will, there is a way. Norway can fix this problem and our job is to make sure that Norway is led by politicians who are willing to do the job.
So please join Dyanne, Naomi and I and many many others for Norway’s largest every cancer demonstration tomorrow. It will start at 15:45 at Regjeringskvartalet, Akersgata 42. If you want to walk with us, give us a call. We will both have our mobiles.