So far so good, no nausea and very awake during the days due to cortisone tablets I’m taking both morning and night which makes me wake up very early (around 5) and then I can’t sleep. But at least I’m not constantly tired all the time and I can always sleep during the day if I need to. When people ask me how feel, it is weird to say that I am actually feeling quite well considering. I am constantly supported by everyone around me and it feels fantastic to have the access to these treatments that I am getting, even though they are not all that fun to go through. Am so grateful for Swedish medical care and all research that has been done all over the world.
The rough plan (which can change at any time) is to finish the first round of 10 days with chemo this Saturday (December 1st). Then the idea is that as long as there haven’t been any more complications with my heart, I will come home next week. A new MRI (not sure yet when they will do it) will show if the treatment has had any effect and I may need a second time of chemo in about a month and then IF radiation will be an alternative, this will start in about two months. My first goal is to be able to stay home for Christmas at least, but there are of course no guarantees. My immune system will go down in about a week or so and I will be susceptible to infections again and I may need to go to the emergency room if I get a fever. But as long as I can be home a while at least, I will be happy.
My days are spent thinking a lot about life’s philosophical questions. What are we here for? What happens when we die? Why do some people have to suffer whereas others do not? It is extremely important to me to discuss this and to accept that death may come soon and do the best of the time I have left. Of course I do not want to die this relatively early in my life, but the only thing I can do is to try to feel at ease with the cards that I have been dealt and not dwell on it too much.
In one way, I feel as though it is easier to be the person it is happening to, rather than being on the side and trying to support someone else. Not sure I would be able to cope as well. Now, I have the mandate to more or less dictate what I want my family and friends to do and let them know what support I need. The most difficult part though is not being able to control how they will all feel if things will not go well. But I am trying to accept that it is impossible for me to do so.
As the tumor is malign and as it is caused by my leukemia, it is not possible to get rid of it by doing a heart transplant for example. This would not cure the leukemia even though the doctors haven’t found that it is anywhere else in my body. Cancer is complicated…
I know that not everyone wants to think or talk about death. And that is perfectly fine. It has to be on your own terms. But if you dare, I urge you to do so. We shouldn’t be living our lives in constant fear of death, but (sorry, cliché) remember that our time is not eternal and stop worrying about insignificant things. I am grateful that I have so far had a great life and can only continue to hope that it will keep on for much longer. However if it doesn’t, it doesn’t.
I will be repeating myself, I need to keep writing and saying all these thoughts over and over again in order to manage the situation. Then, what will happen if the doctors say that they cannot do anything more for me, I do not know. But I am trying to prepare myself.
I can really recommend this book that I started streaming yesterday: “Så länge vi lever” (“As long as we live”, Swedish only) written by a cancer doctor called Peter Strang and also to watch a story tonight on the nine o’clock news (svt.se) about a woman called Ida Boström who has been living with cancer for nine years and who will probably not make it for much longer.