4) Further research and diagnostics in the UMC St. Radboud Hospital (June-August 2002)
The detailed introduction to the UMC St. Radboud Hospital was disappointing. A teaching hospital shows primarily an institution to which you a lot and every time new officers encounter nurses, nutrition assistants, interns, students, junior doctors in all specialties, room doctors and then occasionally a doctor with a name you recognize the letterhead of the department, you repeatedly ask if you can briefly summarize your problem. Several questions are frequently asked again. There must be stacks of paper in the hospital for each patient are present, but coordinating the content of the information seems very limited. A second experience is that it all takes a long time, we feel that is not timely acted upon, perhaps because so many people involved. Another shocking experience in a teaching hospital is very interested in examining the causes of a problem, but that interest in the treatment of phenomena thus causing inconvenience to the patient does not keep pace.
On May 30, 2002, is already planned Tiel-PET scan instead. This does not have a clear picture. On June 11 Peter is seen by the ENT doctor and the radiologist. It commissioned several additional studies (CT scan, exploratory surgery, re-examination of the biopsy was taken earlier in Tiel) and focusing on the search for the primary tumor. Tackling the acute problem (obviously increasing the metastasis on the right side of the neck) seems little attention. In a letter dated July 5, 2002 at the ENT doctor reported "Given the location and fixation of the gland it is questionable whether patients will be eligible for a halsklierdissectie. Any radical resection is doubtful. "In late July the Radboud Hospital knows for sure: there is no evidence for the existence of a primary tumor in the head and neck. Meanwhile, the halkskliermetastasering been determined to be unresectable. The Head and Neck Working Group shares through the ENT specialist that the radiation treatment is indicated. Palliative, but we understand only much later, when we held the patient's file and read quietly, with a medical dictionary at hand.
The ENT physician is limited to saying that the problem now has become very large (6 cm). About the likely success of the proposed treatment he can say little, then we must at the colleague of radiotherapy.
Mid July, the radiotherapy department at the first meeting place. The physician assistant informs careful what we already know. It would be difficult, we knew that already that the lack of a primary tumor by doctors as a major problem was seen, we knew. But we found that you can interpret the same situation is also positive: if a whopper of a primary tumor, you have at least one problem less to clean up. We also knew that Peter would do anything for himself there to the treatment as effective as possible by his condition very well to maintain. We had become clear that adequate nutrition, a healthy lifestyle (regular exercise and good sleep) orthomolecular medicine and the immune system, the effectiveness of the (radiation) - treatment can increase and reduce the side effects.
The radiation oncologist-in-training knew immediately report to their own initiative in this regard was totally useless. The influence of diet was not scientifically proven and many quacks were miserable but rich in cancer patients, by false hope. Variations on this theme, we then still very, very often heard. To increase in the morbid. For the first time we felt then: doctors are not allies in the fight against this rotziekte, but security professionals with a strong territorial instinct. In their view, patients may self do nothing: only the physicians can effectively intervene to bring about a change. Patients are thus condemned to a passive role. This is in stark contrast to the texts in various information leaflets, which are distributed throughout the hospital, where the words "You have to consult with your doctor chosen .." always comes back. It seems mainly to virtual freedom to go for yes and amen to say what the specialist informs.
And a positive, combative patient setting is seen as the inability to face reality. And that reality was, according to the superior who was brought to a moment, the chances of cure were nil and the chances of success of the radiation is very small. When asked by Peter if he would get 2003, the radiation oncologist looked very dubious.
Due to the fact that Peter was already late May, the first study in the Radboud Hospital had undergone the examination was completed in early July and the metastasis was growing significantly, we assumed that the treatment could begin quickly. But to our dismay it was not the case. There are waiting lists for radiation, so the radiation oncologist told us. To our question whether the good condition and mental attitude of Peter may have had a reason for a greater urgency, we were almost laughed.
Peter was not until August 9 when radiotherapy is expected for the necessary measurements for making a radiation mask. The radiation would be a period of two to three weeks after start.
Bad news, but we were determined to us there not to be intimidated. We made an appointment with orthomolecular doctor Bolhuis and cycled a lot in our holiday. Peter cycled the 250 km on one day of our village into a nice little campsite in northern Groningen. And a few days later again. Only Lance Armstrong would (six years earlier) was a serious threat for a top position in the cycling rankings of terminal cancer patients. And Lance won in 2002 for the fourth time the Tour de France.
