14. I would have like to

22nd of May 2020
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I keep thinking that maybe in the future, someone who is also going through breast cancer will read this Diary of a Tit. And, however small, that person might get something out of these writings. Maybe get some advice on how to deal with a side effect, understand their own emotional or physical process, or simply find comfort in knowing that they are not the only one.

For me, I would have loved to have someone to ask all the questions that have been around in my head like crazy during these frantic 43 days. Without feeling ashamed, from a simple question to the complex ones. I feel grateful to all the professionals who have taken care of me so far. They have been kind and respectful, but I have always felt that there are a million things they aren’t telling me. It is probably not the fault of the health professionals as they are specific professionals, but of the system, of the way in which care for cancer patients has been designed. Compared to some of the stories I have heard, I have had much more information than they usually give you.

After talking with Samirah, we have come to the conclusion that they don’t treat people with cancer, they treat cancer. And I am not a disease. I am a person with a little bit of cancer in one boob and in one my of armpits. The rest of my body is healthy. Furthermore, I am not only a person with a little bit of cancer, I am a person who needs to eat properly to be strong for a treatment that is toxic. I am a person and a member of a family who needs tools to find serenity and peace in one of the most difficult times of her life. I am a person who needs to know how this is going to affect her intimate life, a person who needs to know if she has cavities in her teeth before starting treatment. I am a person who may have many insecurities and fears of looking ugly without hair. I don’t know if you are following me. What I want to say is simply that you cannot treat only the cancer and forget that the human being with cancer is a complex being with many needs and that almost all of them are going to be affected, not only by the cancer, but by the treatment itself.

I return to that person who may read this in the future, before going through treatment or who is looking for tools to cope. I am writing this chapter for you, to tell you the things I would have liked to know before starting this journey. I start it today, but I will surely add to it throughout my journey, because I will learn new things, that nobody told me and that you may find useful. Here I go. I would have liked to know that…

You must prepare your mouth before chemo therapy

During chemotherapy you will not be able to receive dental treatment because you will be very susceptible to infections or bleeding. In addition, the wall of your mouth will be very affected during treatment. You can get fungus, sores, aftas and other complications. Therefore, it is best that you go to the dentist before starting chemo and that you keep your mouth as clean as possible during the treatment. I have found some interesting information on this website.

There are options to prevent hair loss

Nobody told me that it was possible to prevent hair loss while going through chemo. I found out because these treatments are being used in the Netherlands and because my hairdresser passed me the contact of a company that offers these treatments. The idea is to cool the scalp so that the blood vessels constrict and the chemo does not reach the scalp. This page explains how it works. It is an expensive treatment and according to the Medical Oncology Service of the Cruces Hospital in Baracaldo, alopecia can be reduced “… using hypothermia. However with this method an increase in the incidence of scalp metastasis is observed.” At the very least, I think it is worth it to get well informed if hair loss is something that concerns you.

There is something called a Nadir and it requires your attention

During chemotherapy cycles, there is a time when the blood counts of leukocytes, red blood cells and platelets reach a very low point. This usually occurs between the seventh and fourteenth day of the cycle, but it depends on the drug being used. For practical purposes, being in your Nadir means that you will be very susceptible to illness, infection and bleeding because your immune system will be especially weakened. You will have to pay attention to your temperature and perhaps avoid seeing a lot of people, especially now with the Covid-19 issue.

You will have to decide whether or not you want to become a mother before starting chemo

If you do not yet have children and would like to have them in the future, your eggs should be retrieved and preserved as chemotherapy and other treatments will damage them. Learn about your options and ask questions without shame in the hospital where you are treated. Chemo damages your veins, but you have options to avoid it. (Added November 16, 2020): The chemo drugs you get intravenously cause a lot of damage to your veins. They become very hard, so much so that it becomes painful to bend or stretch your arms. This inflammation of the veins from chemotherapy is called Phlebitis. In addition to phlebitis, getting chemo in your arms or hands also presents the risk of Extravasation, which is when the chemo leaks out of the vein and damages or injures nearby tissues. Chemotherapy does not necessarily have to be administered through the veins of the hands or arms. There is the possibility of using a reservoir. A reservoir is a small device that is placed in your chest or elsewhere and is connected to a large vein, which can tolerate the medication better and is cleaned faster than the veins in your arms. Having a reservoir avoids punctures with needles, protects the veins and avoids the risk of extravasation. It is best to get it as soon as possible. Many people don’t get it because it involves a small surgery. My surgery took 20 minutes and I never experienced any discomfort from the veins again. Also, the scar it leaves is very small.

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