Monday has started. In the morning, we’re going to the clinic as usual. Then, in the evening, we’re going to KARAKU Cafe with the things we want to let go of.
They’ve kindly offered us a corner of the cafe where we can display the things we no longer need, and customers can take whatever they need.
We have to arrange everything ourselves, so the key is whether we can set things up in a stylish and attractive way.
Yesterday, two young friends came to my house. I handed over all the props I had used for my picture-book activities.
They were originally props for my English picture-book activities, but of course, they can also be used for reading Japanese picture books. They can still be useful at this point.
The props themselves gradually wear out, and new picture books keep coming out, so eventually the props may no longer work for the books being used.
I finally decided that it was time to let them go while there are still people who want to use them. It took me a long time to make up my mind, but I’m glad I finally did.
What a pain! My right neck and shoulder have been hurting since yesterday morning, though my right shoulder has been hurting since this winter. So I put on a pain-relief patch and carried on with my day. But the pain got worse, so I went to an orthopedic clinic.
They gave me an IV painkiller and told me that wearing a neck brace might make things a little more comfortable. They gave me a simple neck brace to wear.
I don’t know why the pain got worse. I guess the shoulder pain has now spread to my neck. The pain is much better this morning, but it still hurts when I move my neck up and down. My left shoulder has started to hurt a little, too.
Oh, well. I guess I just have to learn to live with it and manage it as best I can.
You still have to wear a mask at hospitals in Japan.
It’s Monday. A new week has started again.
I’d like to start the week on a refreshing note, but it’s so humid. It’s unusual for it to be this humid so early in the morning.
Today is my health checkup day. I’m not having breakfast, and I’ll leave home in about an hour. I’m also having a gynecological checkup this afternoon, so it’s going to be quite a busy day. It’s a health checkup organized by the city, so I guess that’s what you get.
I wonder where we should eat—an early lunch or a late breakfast?
This week, our care manager is coming, and our bodywork therapist is coming, too. Thanks to long-term care insurance, it’s nice to have people coming and going .
Yesterday afternoon, Yuki was at a jazz café for a jam session. Coincidentally, one of my gym friends came over to my house, so we spent the afternoon just chatting and taking it easy. She has made some of my kimonos into clothes and bags for me.
We spent a really relaxed afternoon, chatting aimlessly and saying to each other, “We’re really just lazing around, aren’t we?” It was nice to spend such a leisurely afternoon together.
Today, Yuki and I are going to a nearby temple where I have been attending a sutra-copying group. We don’t belong to a particular religion, but we follow Buddhist customs for traditional ceremonies, so we are going there to talk about what we should do in the future. We are not planning to build a family grave.
I happened to learn about the sutra-copying group when I was out walking, and although I am not a member of the temple, they kindly let me join. I have been going ever since. Perhaps this, too, is some kind of fate.
The Obon holidays are over, and our daily routine has returned to normal.
It’s Wednesday today. This morning, we are going to the bank and the clinic. In the afternoon, Yuki is going to get a massage. Do you know “ashitsubo massage”? It’s a kind of foot massage, but it’s a little different. It focuses on the acupressure points on the soles of the feet, which are pressed firmly with the thumb.
I hope it will help improve his numbness, even just a little, although it seems difficult. Of course, it isn’t covered by public health insurance, but it seems to be a nice change of pace for him, so I think it’s worth it. He usually gets a one-hour treatment. Today, though, he is getting an extra 30 minutes, and I’m going to take advantage of that and get the extra 30 minutes myself!
We are also going through our documents and paperwork again and reviewing everything. As part of that process, we are going to the bank today to organize our bank accounts.
Today is the anniversary of the end of World War II in Japan. In August, the media is filled with stories and programs related to the war. This morning, I heard an interesting program on the radio.
In Germany, it seems that January 27, rather than the anniversary of the end of the war, is considered a more important day of remembrance. It is the day the Auschwitz extermination camp was liberated by the Allied forces.January 30 is also an important day in Germany. It marks the day Hitler came to power.
The idea is, apparently, to make sure that Germany never forgets its role as the aggressor.
On Wednesday, we went to the hospital to apply for genomic testing. Surprisingly, the blood sample will be sent all the way to the United States. We should get the results by the end of next month. In Yuki’s case, we were told that the chances of finding an actionable genetic abnormality are “very low,” but we’re going to do whatever we can. We’re also grateful that this test is covered by our health insurance.
It’s right in the middle of the Obon holiday now, but unfortunately, it’s been raining. Well, even if it were hot, I would probably be saying, “It’s just too hot,” and staying quietly at home anyway. Actually, perhaps because I’m worn out from the heat, I’ve been spending a lot of time lying down and sleeping.
Oh, on Tuesday, I played at Karaku Cafe.
Meanwhile, Yuki continues to go to the Jazz Cafe regularly, even during the Obon holiday, and plays whenever he feels like it. I’m glad that he can still enjoy his music in his own way.
This Sunday, we’re going to make a few changes to our mobile phone plans. Little by little, we’ve started to think about the future and what life might be like for me on my own someday. We’ve also started reviewing our respective ending notes.
Yesterday we went to see our doctor.
Unfortunately, they were not able to get enough tissue from the biopsy this time. Next Wednesday, we will meet with the oncologist to discuss having another test done using a blood sample.
Yesterday, Yuki officially “declared” that he would receive no further treatment. We have entered a new phase.
Our doctor also told us, “From now on, you will have to choose between being hospitalized and receiving medical care at home, so you should talk about it together.”
The possibility of Yuki leaving this world, and of caring for him until the end, has become more real to both of us.
To be honest, we are both feeling pretty down right now. But we know that it is important to keep our everyday life going. For now, the washing machine is doing its job, washing our sheets for us.
It is Monday, and a new week has started.
This week, our daughters will be visiting us on different days. We'll take each of them to a different restaurant that we love, so it will be a slightly luxurious week.
The main reason our older daughter is coming is that a gallery in Utsunomiya has invited her to its reception party. She was invited as an artist, so it's partly a business trip. This is the first time she has been invited by a gallery in her hometown. We hope this will lead to her having her own exhibition here someday.
We'll also take our younger daughter and our granddaughter to a French restaurant that we love and have been visiting for many years. As a rule, children under the age of 12 are not allowed there. However, as a special summer event, the owner kindly agreed to let us bring our granddaughter, so we're really looking forward to it.
August has started.
Yuki had his biopsy and was discharged from the hospital as scheduled. I'm relieved that he didn't develop a collapsed lung. The risk is usually low, but since it has happened to him twice before, I couldn't help worrying a little.
Now I'm just hoping he won't develop pneumonia. That also happened after a previous biopsy, so it's still in the back of my mind. But today he's going to join a jam session at a jazz café. I think he'll probably enjoy spending time there more than staying at home.
It's been very humid since early this morning.
As for me...
There are several things I'd like to get organized, but somehow I haven't made much progress.
Every summer I update our family photo album, but this year's is still untouched.
Maybe it's time to get started.
It feels like the world has changed. There was another major earthquake in Kumamoto, even though it has been only ten years since the last devastating one. On top of that, they're also dealing with intense heat.
Sometimes it all makes me feel sad. The weather seems different, and the world itself feels different somehow. But then I remind myself that my mother's generation lived through the war in Japan. Every era has had its own hardships.
Yesterday, I joined an online support group for families of people with cancer. I had hoped it would be encouraging, but instead I found myself listening to people who were struggling even more than I am. By the end of the meeting, I felt even more discouraged. I guess I'm just not ready for that kind of support group right now.
Today, though, there's some good news. Yuki is actually going to the barber. The effects of the chemotherapy he had before his current treatment have finally worn off, and his hair has started growing back. It's now long enough to comb, so he's going to have the back of his hair trimmed.
As for me, I'm going to visit a friend's hair salon and get my hair done, too.
At last, we're back to our usual routine.
We've finished talking with the two doctors at the hospital and the care manager, and we've let our children know about the situation. This morning, we're taking a moment to remind ourselves that we have no doubts about the choices we've made.
Today, we'll go to our local clinic as usual. We might have lunch out, and we'll go to the gym in the evening.
Oh, and since it's the end of the month, I need to update our bank passbook. We still manage our household finances the old-fashioned way—by keeping our bank passbook up to date.
It's not a very hot day today. I wonder what the weather will be like next week.
We're going shopping now. While we're out, we'll probably pick up boxed lunchces for us. It's not that hot today, but I still don't feel like cooking.
I'll "probably" make a proper dinner tonight, though.
This is my update from yesterday's hospital visit.
Next week, Yuki will be admitted to the hospital for one night and two days to undergo another biopsy. It has been three years since his first biopsy. The chances are very small, but there is still a possibility that the characteristics of his cancer have changed. If that has happened, it may open up new treatment options.
If not, the doctor suggested one last chemotherapy drug. However, it is unclear how effective it would be in slowing the cancer, and I didn't get the impression that it was being recommended with much confidence. Since we don't want to lower his quality of life any further, we're taking some time to think carefully about what to do.
If he decides not to have the chemotherapy, the plan will be careful monitoring rather than active treatment. The good news is that the cancer is not progressing aggressively at the moment, so the doctor did not talk about life expectancy.
That's my update. I tried to write it as calmly as I could. Thank you for reading.
It’s been extremely hot day after day. It’s 6:30 a.m. now, and we’ve already finished breakfast. Yuki will leave for the hospital in about 30 minutes.
He has the first appointment of the day, so he’ll have blood tests and a chest X-ray before seeing the doctor. I’ll leave home just before 8:00 a.m.
The doctor is expected to explain the CT scan results and discuss what lies ahead. We know we have to accept whatever comes, but it’s still hard to face.
Anyway, that was my morning update.
Saturday is here. We made it through this week.
It suddenly became very hot and humid. I've been suffering from the summer heat, so I often spend my afternoons sleeping. Yuki has been dozing off in front of his computer, too. I guess we're both in the same boat.
As usual, during the third week of his treatment cycle, Yuki's white blood cell count dropped, so he wasn't able to receive chemotherapy this week.
Next week is finally the CT scan. We'll discuss the results with his doctor and decide how to move forward with his treatment. The doctor has already told us that there are almost no treatment options left.
Since Yuki couldn't have chemotherapy yesterday, we finished at the hospital much earlier than usual and treated ourselves to a wonderful lunch. Thankfully, both of us have been getting our appetites back, so we're doing all right.
Even though the future is uncertain, we're grateful for the small, ordinary moments we can still enjoy together.
Yuki seems to be doing all right on the surface. He was able to have another round of chemotherapy this week. Based on the pattern so far, I don’t think he’ll have chemotherapy next week.
Today, he’s been asked to play the bass in a band, so he’s going to perform. I’m really glad he was able to go.
However, we also learned this time that the chemotherapy he’s currently receiving is becoming less effective. The shadows on his lungs have become more pronounced again. He’ll have a CT scan at the end of this month, and I suppose everything depends on the results. His doctor has even said that this may be the last chemotherapy option available to him, so all we can do is wait and see what happens.
People often describe chemotherapy as a form of life-prolonging treatment. Our hope is simply that he can continue it without suffering severe side effects, so that he can live with the tumor as part of his daily life.
This afternoon, I’ll be joining an online meeting aboutshūkatsu, which is a Japanese term that has become very common in recent years. It refers to preparing for the final stage of one’s life—not only making arrangements for end-of-life care and funerals, but also organizing finances, legal documents, personal belongings, and thinking about how you want to live the rest of your life. I’m not sure whether there’s a single word for this concept in English.
When my mother was nearing the end of her life, I went through many experiences. Because of that, I earned a private certification as a Shūkatsu Advisor. It doesn’t mean I can do anything special, but it has connected me with people who share the same interest. That’s why I’m joining today’s meeting, to discuss what I might be able to do in the future. I’m not sure how much of my personal situation I’ll be able to discuss.
