October 27: Guest Blogger Knot Telling

Guest blogger Knot Telling is sharing with us another perspective of someone else living with metastatic breast cancer. You can follow her journey at her blog, Telling Knots.

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Capital Punishment and Pink Rocks


Condemned prisoners in Japan are not told the date of their execution until the morning of the day itself. According to many experts, this is a contravention of the International Covenant on Civil and Human Rights. The parts of the Covenant that concern us here are Article 7 (“No one shall be subjected to torture or to cruel, inhuman or degrading treatment or punishment”) and Article 10 (“All persons deprived of their liberty shall be treated with humanity and with respect for the inherent dignity of the human person”). In other words, not telling condemned prisoners when they will be executed until a few hours prior to their death is considered to be inhuman and an affront to human dignity. Torture.

I had an immediate visceral reaction when I first read a 2007 BBC News report about the Japanese system of capital punishment, and I have never forgotten it. Living with MBC is not unlike living under sentence of death and not knowing how long you have until the sentence is carried out. The stress can be a kind of psychological torture.

There are many kinds of physical torture. It’s been reported that regimes such as the Nazis in the 1930s and 40s, the gulag in the Soviet Union and North Korea today used forced meaningless labor as torture, tasks like carrying heavy rocks from one place to another and back again. Sometimes the stress of living with MBC feels like carrying around a load of rocks.

Yes. I sometimes feel as though an arbitrary authority is forcing me to carry large rocks from one place to another. Sometimes my load is reduced and I can breathe more easily, relax my muscles, sleep through the night. At other times, I have the sense that more rocks are being added to my burden.

Save the tatas!
A rock.

Early detection of breast cancer saves lives!
Another rock.

Breast cancer can now be cured!
Another.

If you have a positive attitude you won’t die of cancer!
And another.

Buy this pink teapot/garbage can/mouse pad for breast cancer awareness!
Yet another.

Every October my burden gets so much heavier. Listen:

*Breast cancer is not about breasts. It is a horrible disease that kills both men and women. It is not about saving sex appeal; it’s about saving lives.

*Early detection of breast cancer can mean the treatment is not as difficult, but it is no guarantee that it won’t recur. In fact, about 30% of everyone who has breast cancer—regardless of the stage at diagnosis—will have a recurrence and metastasis.

*There is no cure for breast cancer. None. There is treatment that can lead to remission or an NED (no evidence of disease) condition, but there is no cure. No one knows who will be in that 30%  and who will not. For the unlucky 30% there is no cure. We will have breast cancer until we die, probably of breast cancer and its complications.

*There is no scientific research that shows any relationship between mood or attitude and recovery from cancer. At this point, there is no way to predict with any degree of scientific certainty who will live and who will die. Some cheerful, positive people die. Some miserable, complaining, angry people recover. Some people who have variable moods live and some die. Mood and attitude do not correlate with, let alone influence, recovery.

*Pink merchandise has become a common marketing ploy, especially in October. Much, if not most, of the pink “breast cancer awareness” merchandise that is sold profit manufacturers and vendors and no one else. If you like pink, go ahead and buy it, but if you want to contribute to the fight against breast cancer be under no illusions. Unless you have verified that a reasonable portion of profits goes to a reputable foundation or charity, make your donation directly.

The pink rocks that are added to my burden are just as heavy as the others.

Even if I didn’t have those extra rocks to carry around, the stress of this indefinitely postponed yet certain death sentence is psychological torture. I am in my eleventh year of it, and I am tired.

I am tired of pain and I am tired of the narcotics that treat it. I am tired of having a permanently compromised immune system. I am tired of massive fatigue.

At the same time, I want to live every day that remains to me. It is the frustration at not being able to do that the way I’d prefer that makes me tired and angry. Nevertheless, I have taken steps to have the best quality of life I can. I have made arrangements for people to come and help me with the tasks I can no longer do (housework, garden work, errands in town). I enrolled in a distance learning course. I stopped exams and treatment, other than comfort measures like pain management.

In other words, I found the little power that is left to me in the face of the arbitrary “authority” (fate? genetics? environment?) that condemned me and sentenced me to the forced labor of carrying rocks until the unknown date of my death. I draw on that power as much as I can—some days more, some days less—in order to live as well as I can until MBC causes my death.