Family diary November 2023
Wednesday 1-11: Going home to the water with Joe. The intake woman wanted me there. Poor Joe, he’s having such a hard time. Call the mortgage provider again later, they have received the money from the term life insurance.
Thursday 2-11: Wind force 10, schools in panic, Remco surfing of course. Back to the vet. Sheba still has high blood pressure, so increase her medication. Problem at work in the evening, in meetings until 1 am.
Saturday 4-11: Finally something fun, a day at KreaDoe.
Monday 6-11: Philip has another MRI scan of his head.
Tuesday 7-11: Philip CT scan + fitting radiation mask.
Wednesday 8-11: First time to the gym, wonderful, mind is at zero. I spent the whole afternoon with Joe. Called Annita’s mortgage lender and the notary many times, so many questions and no one cooperates. In the evening Joe came by to discuss how we should approach things.
Thursday 9-11: Joe received his blanket made from pieces of fabric from Annita’s clothes.
Friday 10-11: I really had to work more slowly, I suffered from palpitations and shaking hands. Philip CT scan lung. At the end of the afternoon, nice contact with the mortgage provider and the notary.
Tuesday 14-11: Day in Den Bosch, 7:45-10:00 outbound journey, 5:45-7:30 pm return journey. Starving and broken. Later we stopped by Joe to walk the dogs, because he had had his bone scan today and it was really painful.
Thursday 11/16: Received photo album from mommy. Together with Joe, I posted text & photos on Annita’s Facebook.
Wednesday 22-11: Free, wonderful. Enjoy reading and relaxing in the gym. Set up a meeting for Coderdojo in the afternoon. Immediately to the hospital to finally pick up my mother’s appointment card. Completed the health insurance form at home for mileage reimbursement for all treatments.
Thursday 11/23: Joe went to the AVL very early with Keith for his bone scan results and an internal examination. I go home alone and take the dogs for a walk at half past nine, otherwise they would be alone for so long. During the stand-up meeting, Joe called: it had spread to his bones. I shouted: FUUUUCK very loudly. Later he came by to explain it further, but he didn’t have much more information, because he was called in the evening with a plan. Visited him at the end of the afternoon to get photos from an old iPhone. In the evening he received a call from the hospital and was given a number of options that he had to think about carefully. Discuss everything again on Monday and make a decision. Philip received 3rd and final radiation treatment today.
Friday 11/24: Home alone and working, just palpitations all the time, can’t do anything about it. Had some free time in the afternoon. Go to the gym together, switch off your brain. Early to bed and crying a lot.
Saturday 11/25: Woke up very early and cried non-stop, can’t help it. She also cried in Nina’s arms for a while, she is so sweet. Sara braided for her gymnastics competition. I go to Joe’s to sort through a mess of mail/papers. At the end of the afternoon we went for a cocktail with Frederik, had a nice chat, and it was nice to be out of the house.
Sunday 26-11: Nina braided her hair and went to Wormer alone for Nina’s gymnastics competition. I sat for many hours, but I actually liked it because I didn’t have to and couldn’t do anything. Watched Formula 1 at home and messed around with my surprise a bit. I woke up alone for a long time at night and cried a lot, eventually writing a whole text.
Reported sick
Monday 11/27: Overslept, just forgot to set the alarm. Then I stood in front of the washing machine and had no idea how it worked. Then I thought: OK, this isn’t going well, I should call in sick. Posted the text I wrote last night on Instagram. Well, then maybe people will understand how I feel. I spent an hour in the bath, I thought it was nice and relaxing. But I felt trapped because I couldn’t do anything.
At the end of the afternoon we went with Joe to AVL. 80 minutes of delay, but I didn’t really mind that. Sitting relaxed, not having to do anything and chatting together. Urologist: if we don’t do anything now, life expectancy will be 12 months. The choice was to start normal chemo right away or a CT scan in two weeks in the hope that there is a new metastasis, so that they can take a puncture from it so that they can determine which experimental treatment they can give. The doctor prefers the experimental treatment because it is more effective and makes him less ill. They can’t take a puncture from his bladder because the main tumor has already been removed, and they can’t use the one from his bone because there’s no tissue. The experimental treatment consists of immunotherapy and EV (no idea what that is). So now waiting for the scan.
Tuesday 11/28: Lying in bed reading all morning and moved to the couch in the afternoon. Still a lot of palpitations, even though I’m not doing anything and don’t have to do anything. Philip had his first immunotherapy today and was told that he had to start arranging things for when he is no longer here. In the evening my boss called and said it would be better if I didn’t work for two weeks. I found it very difficult to say yes to that, but I know it is better.
Wednesday 11/29: I thought I would go to the gym in the morning. Normally that calms my mind because I don’t think about everything I still have to do. But after every exercise I became dizzy, I got a very loud ringing in my ear and a pounding headache. So after a few exercises we went home again. I spent the rest of the day on the couch with a blanket and even slept for a bit.
Thursday 11/30: I stayed in my pajamas all morning. A few ideas came to mind about what to do, but as soon as that was in my head I started having palpitations, so I didn’t do anything again. Sitting around on Nina’s old keyboard and lying on the floor in the living room in the sun with some music.
Joe himself had gone to the intake for the normal chemo, and just let it continue just in case. This was only an oncologist and he was even less positive. He indicated that if the treatment works, his life expectancy is 12 months and if it does not work, it will be 6 months. Then a thick blue envelope arrived on the doorstep, yippie, more forms to fill out.
When Nikki came home, I took a shower and got dressed, then started typing this.