(Warning: This blog post is non-technical but purely personal. In my leukemia diary, I write openly about my current health issues. This blog might be triggering for people who struggle with, or lost dear ones to, cancer and other similar diseases.)

In my previous post, I wrote about the ups and downs as I was told I could go home as outpatient, and then developed a fever and had to return to the hospital. Luckily, that situation changed shortly after I published that post.

Back home (and now for real)

As I wrote in my last blog, after feeling rather bad for a few days, I had started to feel significantly better on Tuesday. That continued. On Wednesday, I felt even better. And it was then that the doctors told me I could go home. Not on leave. Not as outpatient. Discharged.

I do still have to go to the hospital a few times. But not often. Not for regular checks to ensure I don’t fall ill. That risk is now low enough that it’s sufficient that I promise to call when anything is weird.

So as I am writing this, I have been home for over a week now. And I’m loving it!

This is still temporary. In some time, most likely somewhere early May, I will be admitted to hospital again. For more chemotherapy. And for the stem cell transfusion that will hopefully save my life and cure my cancer. But that is still a few weeks away. Until then, I enjoy being home – even when there will be a few hospital visits in between, to assess the effectiveness of the first chemo, and to make sure I am fully prepared for the much rougher second round that I’ll have to go through.

My appetite

When I was discharged, my appetite was not good yet. I wrote before about my decision not to fight to eat more when I have no appetite, but to get a feeding tube instead. Although I felt better, and ate better, I still did not eat enough at that time. So I was sent a supply of tube food, and instructions on how to use the feeding pump. It was easy. I have done the same after my first leukemia treatment, so I still knew how it all works.

Since I ate about half my required daily intake the regular way, I was not hooked up to the feeding tube all day. Just at night, to make sure I got the other half of what I need on a daily basis.

That lasted until last Tuesday. When going to bed, I had a very violent sneezing attack. So violent that I managed to sneeze out the feeding tube.

The next day, I discussed the situation with my dietician. She agreed with me that, especially since I eat more by the day, this might be a good opportunity to see how things go without the tube. If I start to lose weight, then I can always return to hospital to have a new tube put into my nose. But for now, I live without the tube!

Exercise

Chemotherapy tends to damage stamina and muscle mass. I want to use the time that I have at home to build back as much as I can. I do that by going on a daily walk, regardless of the weather (though I have so far been blessed with great weather every time I went out to walk).

Yesterday, I walked 2.75 km (1.7 miles). I know that this sounds like just a short stretch. And in comparison to the hikes I did two months ago, it is just a short stretch.

But one week ago, I dropped on the couch, exhausted, after walking just 1.25 km (0.75 miles). That is how damaged my stamina and muscle mass were. So even though I am still far removed from what I was able to do before my chemo, I am very happy and proud with how much I have already rebuilt!

Conclusion

I’m losing hair by the day. And my energy is low. But I am building back. And I am doing so from home, which makes things infinitely better.

I feel my stomach all the time. But with the great food that my wife cooks for me, all so much better than what the hospital can offer, I can still eat more or less a normal daily intake. I have been without feeding tube for two days now, and so far things are going well. So I hope that I can continue to go without that tube up my nose – as convenient as it is when I have no other way to eat, it’s still a real nuisance, so I am glad it is gone!

With basically only good news and no new complications, this is a short blog. I can add words, but they would not include new information, as there is no new information. So I guess I’ll just save my post, publish it, and then go out into the woods and see if I can cross the 3 km (1.85 mile) boundary today.