WARNING! This post may be distressing.
Having gone through all of the tests, with blood samples, electrocardiography, CT, MRI and PET, and an operation to remove the suspected tumour, there was a long wait. As the wait got longer the more, I suspected that the final diagnosis was not going to be good. It all depended on the outcome from the pathology department. I finally got to meet the team from neurosurgery and oncology to discuss my condition and how it is to be treated.
Walking into the room was a strange experience. Two doctors dressed in standard hospital attire (scrubs!) sat next to each other, while a nurse, also in scrubs sat to their left and slightly further back. I interpreted this as an expression of hierarchy within the health care system. Two chairs were positioned for Bitte and myself, not too close to the doctors and not directly in front of them – these are corona times after all.
After standard introductions and the formalities of asking how one is feeling and my usual bluntness in saying that I feel perfectly healthy although very worried about what I was about to hear, we got down to business. We were told that the tumour, upon examination, was found to be a grade IV glioblastoma. Actually, I knew this as I had read my medical notes the evening before, but hearing this information from the medical expertise present in the room is totally different to reading it on a computer screen. As it all sank in, questions started to form, primarily concerning how much time do I get? and what do they, the medical staff, intend to do about it, my unwanted intruder? The meeting went on for about an hour. We had lots of questions and got some answers and some half answers. In general, it is up to us to draw conclusions from the information available. We have, however, a plan and a schedule to follow. These will keep me busy for the next two years or so.
My treatment starts on November 24, but there are some preparations which are necessary to guarantee the accuracy of the radiation therapy (Read “The machine that goes ping). Treatment will consist of a combination of radiation therapy (X-rays, produced by a linear accelerator, directed with high precision at the site of the tumour. My warped sense of humour says that the tumour is probably in the freezer of the pathology lab) and cytostatics (temozolomide). This phase of the treatment will last for six weeks with radiation five days a week and cytostatics every day. This phase takes us to Twelfth night! After that I get a break for two weeks before phase 2 begins.
Phase 2 involves temozolomide treatment for five consecutive days followed by 23 days for recovery, repeated a number of times, I believe that they mentioned six times, but it could be more. At the same time as the second treatment phase begins, I will also be fitted out with Optune equipment for electromagnetic irradiation of the residual tumour cells. This is a kind of local 5G transmitter which I will have to wear 18 hours a day, powered by a battery which is carried in a small rucksack. It will be interesting to see how I cope skiing and playing golf with this in place.
Ahead of me are two years of treatment, which will, in all probability, be altered along the way. This treatment will not only affect me, but also those closest: family, friends, and colleagues. (Please note that you may be included in several categories, I am in the happy situation that I consider both family and colleagues as friends.) I am entering this process with a good deal of optimism as there are a number of factors which give me an advantage: The tumour was discovered early and all detectable parts were removed soon after discovery. The tumour was, despite being grade IV, methylated, which can be interpreted as making it more susceptible to the treatment and also slightly less aggressive. I am in fairly good physical shape and should cope well with the treatment.
In conclusion, I will follow the advice of Project Runway presenter, Tim Gunn, and “Make it work”.