A reflection of life. My life journey with brainstem cancer.
Monday marks the anniversary of Titien’s death. August 23, 2020 was a Sunday. She died in my arms in the morning. Writing that brings tears to my eyes and this week – her final week – is a special emotional challenge. I am on vacation now, just like last year.
Here are a few thoughts about grief and the past year, loosely put together:
Continue reading “Thoughts about grief a year after her passing”
A couple of days ago, Ernest from the Rainbow Project contacted me. He told me that he successfully finished distributing our donations to the teachers in rural Indonesia in form of cash gifts and bags of food. He sent me an interim report and a final report, both of which are available for download here. Thank you again, also in Ernest’s name, for being so generous.
Continue reading “Memories of museums”
I was talking to Ernest the other day. Ernest is our partner in Titien’s rainbow project providing help to school kids in remote Indonesian locations. He apologised for not yet having delivered all the shoes we bought with your help for Titien’s last project. Unfortunately, the travel restrictions in Indonesia due to the coronavirus-pandemic will also prevent this project from being completed in the near future.
Continue reading “RAINBOW PROJECT PROGRESS REPORT”
Hello, this is just a short update on how things are going. I am not sure I should keep writing here, after all, this is Titien’s blog and now it is only about me. Anyway, I am doing ok. I moved houses and it feels like home already. I am back at work and I get things done, I am functioning.
Continue reading “How things are and how they were a year ago”
Two weeks ago was Titien’s funeral, she died today four weeks ago. I just would like to post a short update here and thank you for your continued thoughts, prayers, words of support and donations to Titien’s charitable project. I also would like to apologise for not replying to every message and every comment, as Titien certainly would have done!
Continue reading “Four weeks ago, two weeks ago, yesterday”
It is one week today that Titien died. The sadness comes and goes in waves. Thank you very much for all the comments, memories, and words of support. I am overwhelmed. Titien touched everybody she interacted with and she was the love of my life.
Continue reading “One week of mourning”
The day before yesterday in the late afternoon Titien had a breathing rate of 35 breaths per minute while lying down. According to Wikipedia, 12-18 is normal for adults. It became better in a sitting position. She wanted me to stay with her and not get on my road bike on the balcony to pedal on the bike trainer for an hour.
Continue reading “IN THE TWILIGHT ZONE ON BORROWED TIME”
Here at home it has become much quieter since Titien can no longer speak properly. Of course, it was she who initiated and kept the communication going in our relationship. I miss that.
Continue reading “HOW DIPG IS ERODING OUR COMMUNICATION”
Titien and I have a mantra that we’ve been following at least since her being dignosed with DIPG: live in the here and now. What sounds like a hackneyed phrase from the self help literature is actually meaningful to us. We have realized how valuable the time we have left is.
Continue reading “HOW TO LIVE IN THE HERE AND NOW? (by Tobias)”
She sleeps a lot or dozes off. The tumor in her brain stem paralyzes all her muscles. She can no longer hold her head and if I or an armrest does not support her, she tips over on the sofa or out of the wheelchair.
Continue reading “UNFORTUNATELY TITIEN’S STATE OF HEALTH CONTINUES TO DETERIORATE (by Tobias)”