The pace of my daily life has been reduced from an express to a slow train with uncertain destination. Simultaneously a team of care professionals tries to map out and start my new journey i.e. scheme of treatment. Both are complicated issues in such a complex disease. I am the engine driver of the express train. The second journey is planned for me ánd without me; I am the traveller and get to hear when I’ll be expected and where.
A biopsy within a week appears not feasible after all; it will be a week later. Tomorrow I’ll have the ‘2nd opinion consultation’ which I’d asked for and on Wednesday a meeting with the radiotherapist for the third leg of the expected trajectory, which will only take place in a few months’ time. The ‘1st opinion consultation on the first part of the treatment plan’ still has to be booked, as it depends on the result of the biopsy. I’m cycling with my telephone in my hand not to miss any appointments for new hospital visits, taking the risk of a traffic fine.
At home I note all appointments in my diary – taking into regard travelling time and possible run-out. I also schedule time to prepare questions in advance together with my dear friend. I set my alarm to take my next dose of Paracetamol tablets to keep the pain at an acceptable level. I am happy to have organized everything so well and want to prepare for my first work-related video call. A welcome change. Just when I open my mailbox a new mail arrives: ‘We inform you that we have scheduled a telephone appointment for you’. It turns out to be a consultation with an occupational physician. This consultation will take place within the hour. If I am unable to come, I have to contact them timely it says in the invitation. So I sign out of the work-related video call. The doctor calls exactly on time and asks me whether it is convenient.
At night when I go to bed, my little red tomcat looks at me expectingly. He hopes for our daily ritual: a game we invented together and which we both enjoy tremendously. We end every day with it – always at a moment which suits me. And if I am not able to do it, never mind, he still strokes my leg softly…