Don’t fixate on negative thoughts.
For the first time. For the fifth time.
I have already heard five cancer verdicts. Yet the first time was the worst. I was a professional soldier and had just put a very stressful year behind me. At last everything had calmed down and I had begun enjoying a more pleasant period of my life. And that was when I found my first lump. It was 2005 and I was 43. This was followed by the discovery of a rapidly growing tumour, my first operation, and my first chemotherapy. I was so afraid – I had no idea what to expect. The fact that I was studying psychology at the time was a great help to me. I initially fought extremely hard, but then realised that I was actually fighting myself, fighting the cancer in my body. And that was not what I wanted. Yet I had to arrive at this understanding through a gradual process. It is nice to go into treatment with gusto. At the start I fought, yet chemotherapy wears you down and suddenly you don’t have the energy for the fight. The second discovery was also very strong and unexpected! I also wanted to fight, yet I gradually came to understand that the battle against cancer is unfair. I arrived at the conclusion that it is better to accept what I cannot change. Yet this does not imply resignation! I also stopped asking, “Why has the cancer come back? Why me? What did I do for fate to punish me so?” Instead I asked questions like, “What can I do for myself to make me feel better? ”How can I handle the situation to better cope with it? Where are my limits? How far can I go?” When I ask questions like this, I no longer have negative thoughts and can better cope with the situation. Of course metastatic cancer overwhelms you. Yet if I ask myself questions like, “What can I do for myself? How can I live my life consciously, authentically?” then the situation changes and my life improves. Even if I am living my life with metastatic breast cancer.
About femininity.
I briefly considered whether I should get new breasts, but my husband told me that I didn’t have to if I would only be doing it for him. He told me that he loved me just the way I was. And that even if I had lost my hair for the third time and had lost my breasts, that does not make me any less ‘me’. I feel like a woman – I am a woman. Making sure I sit with a straight back helps. At difficult times, when I am discussing my state of health with my oncologist, or when I am depressed, it helps me to sit with my back straight and breathe deeply. Nothing has actually changed, yet I feel calmer and can perceive what the physician is telling me and what is going on around me. I also had a period of depression, but with “a straight back” I coped much better with it. The fact that I accepted the situation as it was, for example that I had no hair, also helped those around me perceive everything normally.
How my family and friends help me.
The ideal support when I am in hospital is a loving relationship. When I asked my son how he saw my illness, he said that I still kept seeing the funny side of things. Sometimes of course I felt terrible, and then I crawled into a corner and “licked my wounds”. Yet when I felt better again, I was happy to be able to see my children grow up. During and after my treatment I am sometimes very tired and so any little thing helps – like my husband offering to make me some tea. These are normal things that a healthy person does without thinking, but for somebody undergoing treatment they are a great help. Both physically and emotionally.
I really hate questions like, “How are you? How are you coping?”
I like it when somebody calls me just to chat. A patient is always happy when somebody remembers them from time to time. Like when somebody calls you and says that they happen to be nearby and could they drop in for a cup of tea. Or that they happen to be in the store and can they buy me some nice apples. Calling a patient like this is a manifestation of normal humanity. Because the patient is waiting for somebody to contact them. It forces them to get out of their pyjamas and “get presentable”. I wanted to advise women impacted by the same illness about what has helped me. So I wrote a book I called “The ABCD of Coping with Cancer, Recurrency and Metastasis”, which was published last year. I also wrote this book because there are many groups on Facebook that can actually have the opposite effect than support on women not psychologically prepared for negative news. We don’t always get a happy ending. This is why I also recommend websites with verified information sources like the Alliance of Women with Breast Cancer at www.breastcancer.cz and the website of the Czech Society for Oncology at www.linkos.cz.
It is important to realise that our lives are finite.
The communication with my physician has always been good. Memory is sometimes affected by chemotherapy, and so if I have a question for my physician, I write it down and ask it during a check-up. Yet the reality is that physicians sometimes just don’t have enough time for their patients. Hence I am a proponent of patient organisations that arrange stays for patients at which they can meet physicians and various experts and where there is enough time for them to ask anything and everything they want. Accepting my illness (I call it my diagnosis) as reality means that I am also open to discussions with the palliative team. I don’t want to close my eyes to what it is. I have come to the conclusion that, “Becoming aware of the finite nature of our lives gives us greater humility towards life itself”.
How do I still have room in my head for beautiful things?
One Friday, as an external guest, I gave a lecture to soldiers from the Military Headquarters entitled “What To Do if Things Don’t Work Out”. Shortly afterwards, I received my oncologist’s assessment of the latest finding and an offer of palliative care. Yet I had already guessed two days before. And so I cried for a while and considered it. I cried a little more and then spent a week sorting out my things and shredding papers. I had loads of notebooks and materials for lectures. I had clung to them, and had a personal relationship to them. Yet at the same time I was teaching people not to cling to negative thoughts, to things, or to relationships. I also made my will. This time an official one. In my opinion, we do not make wills so that we can die well but rather so that we can live well. Afterwards, I had the pleasant feeling that I had closed that chapter and that I could now focus on other important things. Now I have room in my head for beautiful things.
What can make me angry?
When somebody ‘likes’ all my articles and posts on Facebook, and then tells me, “Zuzi, the most important thing is that you get better!” This is not a good thing to say to metastatic patients. We want to get better, but… maybe the placebo effect works… so thank you for your words.
Message to patients
Straighten your back, learn to breathe deeply, make time for yourself, focus on yourself and be yourself. Learn to love yourself. Let’s enjoy the time we have here. Let’s free ourselves of negative thoughts. I decide what sort of day I will have. So what if I am ill? Everybody has something!
Message to the public
Give us love, understanding and support, and we will get through this together, even if some days will be painful.
