Depuis quatre jours je suis rentrée à la maison. Je suis bien faible et amaigrie de 5 kg. J’ai des douleurs abdominales lorsque je respire un peu fort. Mes cuisses semblent avoir perdu tous leurs muscles. Où est-elle la femme qui faisait 25 km de vélo par jour pour aller au travail et qui enchainait avec deux heures de cours d’aviron? Il faut à nouveau repartir à zéro, se reconstruire physiquement et remonter la pente psychologiquement. Comment ai-je tenu cette dernière année?
English version. My survival kit
Four days since I've returned home. I am very weak, emaciated: I have lost 10 pounds again. I have abdominal pain when I breathe a bit much. My thighs seem to have lost all their muscles. Where is the woman who used to cycle 25 km a day to and from work and then trained at the rowing club the same evening for two hours? I must start from scratch again, to rebuild myself physically and psychologically, and go back up the hill. How did I survive this past year?
About 60% of patients experience significant psychological difficulties after cancer: anxiety, depression and PTSD. How to join those who regain their full physical health and mental health, and transform this experience to build a better self-image, a better appreciation of life, or to find an even stronger reason to live?
Back at home, I was a little confused and I felt the need to make a list of everything that worked for me - my survival kit. It's a mishmash of things learned during my activity as a researcher on well-being and stress management, and wise advice provided by professionals I have read or met directly. It will help me to recapitulate them here and I hope these tips and tricks will also help patients who read me:
- I have been active in medical treatment, despite the initial feeling of having nothing else to do than passively receiving treatment. Staying active means learning about treatments, and consulting the best hospitals and the best specialists to ensure that we receive optimal care.
- I continued to receive visits and regular news from the outside. It helped me especially when I stopped working. Colleagues have continued to give me news from outside and this made me eager to get soon back in the arena.
- I was entertained with movies, progremmes showing beautiful scenery, or comedy sketches. I was loaned piles of DVDs!
- I lost and then found again small pleasures like the pleasure of eating. Often I could not eat much, but I wanted to eat something really good. I ordered food delivered at home when I could not drag my own body to the restaurant but I had an urge to eat sushi.
- I started to cook much better, despite my new limits (very painful obstruction and changes in taste due to the chemos and the antibiotics). I started to read about "anticancer" ingredients and have learned to incorporate them into my diet. I then made recipe cards and I now have many ideas of menus filled with ingredients that cancer hates.
- I became aware of my sad feelings, and I went through anger and hopelessness. Some days, I even wanted to die rather than suffer so much pain. I learned to let these feelings exist in me, and to not deny them or hate them. These feelings are totally justified. I had to learn to "look at them" with a certain distance and convince myself they could be only temporary. These feelings do not define who I am. I am not an angry woman in general, but sometimes I'm angry and I accept it without blaming me and letting that emotion erase in my consciousness without judging.
- I have much pleasure to share my findings and exchange information about the disease, treatment of pain or well-being with other patients or cancer "survivors." I felt good and felt I was doing something helpful eventhough I could not yet return to work or take care of my son as I would have liked.
- I learned to accept help from my friends and the people who wanted to help me, come to visit, to entertain me and to cheer me up. I gradually learned to seek help for small things, then I dared to ask for help for larger services (my colleagues have even come and painted my bedroom recently).
- I learned to talk to William about my illness while remaining optimistic. I was advised to talk to him during the day while I was busy to avoid making it too formal. I told him that I had very good doctors who were doing everything they could to help me be free of cancer. Recently, I told him that if one day my cancer could not be cured anymore, and if I was about to die, then I would tell him - but I insisted that for the time being, doctors believed my cancer was going away.
- I had to find new activities to be with my son, that would fit with my new poor physical condition. For example, when I have not been able to play outside table tennis with him, we started to play on the Wii. I made sure he continued to play and thrive outside the home, asking other parents to invite some afternoons.
- I felt many things more intensely. My emotions have become much more vivid. I cry more easily, whether of sorrow or joy. It seems that I can perceive some things more intensively, with more attention to all accompanying sensations and with deeper emotions. I enjoyed a simple fire at the Halloween party as if it were my last and I've never seen a fire as nice as this little one. I never get tired of watching trees, birds and canals. Children and their parents seen in the street seem filled with love and I smile watching them, feeling steeped in this universal love.
- I felt the need to rely on models and inspirations. I found strength in the autobiography of Lance Armstrong (although I do not like all facets of his personality) and that of a Dutch swimmer who won an Olympic gold medal a few years after struggling against cancer. I was also inspired by photos or videos found on the internet as this photo of a man who is walking on his hands while having this lefs in a wheelchair. I keep in mind the sweet face of a woman, seen by chance on a psychology magazine, which still survives, more than twenty years after her relapse of ovarian cancer. When I feel discouraged, I remind myself of these pictures and they help me find courage and hope.
- I've learned and practiced mindfulness meditation based on the method of Kabat-Zinn. I practice sitting meditation, a few minutes every morning - except sometimes when I have too much pain, as now, and I will replace it by a walking meditation.
- With the method Kabt-Zinn I was introduced to yoga in its meditative dimension (hatha yoga) which consists of paying attention to inhaling and exhaling in harmony with movements, being conscious of bodily sensations during movement, and practice compassion, non-judgment and patience during the movements. I can practise a little bie every evening and some afternoons - except for weeks following surgery.
- I have avoided developing a victim mentality. When I was tempted to complain of my fate, I thought about people who are less fortunate than myself and forced myself to enumerate all the beautiful things and privileges that life have offered me. I have known of many children with severe disabilities living in constant pain. I saw poverty in India and South Africa, and its correlates, malnutrition, stress, sadness, violence, disease and early death of relatives.
- I thought about life as a succession of seasons. Cancer is winter. Winter is not the end of life necessarily, and perhaps the spring will return if we survive this winter. Winter is the time of enforced rest. This is also the time to consolidate one's roots. One can use it to consolidate relationships with our surrounding or to discover new techniques of well-being.
- I had bursts of laughter. We have organized evenings with friends to watch funny programs and comedy movies. I have also taken the new habit of sitting next to my son as he watched children's programs and to laugh with him - instead of washing dishes or paying bills. He enjoyed seeing me sitting down with him and share with him the television jokes.
- I once made a list of everything I had learned in cancer, and was surprised to discover it was quite long. I then realized I still had control over many aspects of my life.
- I take pain killers when they are prescribed by doctors and I do not pretend to be brave in vain: the painkillers make you feel better mentally, to remain more active and sleep better. They thus allow a faster recovery.
- I imagined and planned a vacation trip after each surgery and chemo, to give myself a goal and motivate me to get back in shape.
- I read the benefits of physical activity on survival after cancer. I set goals to resume physical activity gently, a little walk and bike every day.
- You have to sleep. To sleep better and have sweet dreams, better do something nice before going to bed, a beautiful film, a book, a candlelit bath, call a friend, cuddle if you have a partner.
- The fear of recurrence is very high but normal. I have not a magic cure. I think it takes courage and acceptance of one's fears. I try to make myself useful. I care about something else than myself. I make some plans for the future even if only in the short-term.
- To maintain hope, I let aside my dark thoughts ("I'll think about it later, not now"), I focus on the beautiful things and things that energize me. To do that, I used methods used by cognitive and behavioral psychology in which patients who suffer from phobias or anxiety are asked to become aware of their recurrent thoughts and replace them with a beautiful image. Initially, I always used the same picture: a memory of my holiday in Canary Islands, alone with my son, after my divorce, when we did parasailing over the ocean. Little by little, I used other thoughts more varied and based on current events or small projects.
- I improvised a disco night at home with my son: soft light, rock and disco ... and we danced and giggled!
- I share my sorrow with a friend when I lose hope. I used to be reluctant to share my anxieties: I did not want to bother my friends, or hear "you have to be strong." (I know). But many people wanted to support me and help me. You have to give them the opportunity to help, and sharing some moments of weakness. We are stronger if we are not alone to fight against the disease.
- I made photo albums and left a trail of my life for when I'm gone, so that my experience and my history, my successes and my failures, will reach my child, nephews and nieces and perhaps even their children.
- To survive means to not panic and wait patiently for the right moment to take action. This is an advise from the TV show "Survivorman", the man who goes seven days without food to show us how to survive in totally isolated places. He explains we must think and act only good time rather than lose energy unnecessarily. What's the link with my situation? I just think about it when I am blocked on my hospital bed, anxious to move and escape.
- I did not blame myself for what happened. There is nothing we can do to prevent ovarian cancer whose causes are multiple and can not be predicted.
- I've continued to love life and have kept all my reasons for living, what gave me more pleasure, my son, my family and friends, my writing activity, being useful to some people. I even found new opportunities as I could help others by writing this blog that some find inspiring. I developed a new way of writing, more personal, and in my native language, which is very different from the academic writing (in English) which was familiar to me.
- I did a lot of walking in the woods nearby and sometimes in town. This allowed me to stay physically active while relaxing me, enjoying the tranquility of nature or watching beautiful things in stores.
- Some bodily pleasures disappeared during treatment and I thought I would never again experience them. I had to learn to take care of my new body, not just to stay in shape but to feel good and feel pleasure again. I overcame my fear of pain. One day, a full body massage gave me a new taste for life by reconnecting my body and restoring confidence in me - I rediscovered my body can still have great pleasure to be touched.
- I watched stars in the winter skies and lost myself into the reading an atlas of astronomy. I realized the immensity of the universe, the possibilities for other lives on the billions of other planets, our smallness and our limitations. It helped me to put my problems into perspective and to appreciate the beauty and wonder of life, to feel a strong love for all living things.
- Friends have told me repeatedly that I was still pretty despite illness and even in spite of my hair loss. For a long time I did not believe them - they just said this to make me happy of course. And then one day I got a professional makeup and was photographed in colorful clothes. I realized that I still looked very nice when I took the trouble to choose the right clothes and the right colors for me. Since then, I do feel pretty, despite the disease.
- I learned to stop the autopilot in my thoughts through mindfulness. While I do everyday tasks without thinking about it (showering, washing dishes ...), I stop my thoughts and I "look": What was I thinking, right there? I smile at my own thoughts. I know myself better.
- I had to manage priorities very differently because I did not have the energy to make as much as before. The principle is to urgent things on different days. Day by day, a 'to do' list should hold one "necessary and unpleasant" thing for three pleasant things. This ratio of 1 to 3 is recommended by researchers in positive psychology to reach an optimal well-being in everyday life.
- At one point in the day, between two activities, I sit 3 minutes, closing my eyes. I breathe, relaxing my muscles and I become aware of his body (tension, pain, wellness, positions), then my emotions and finally my thoughts. This simple exercise is really powerful, as many of these mindfulness techniques used to know ourselves better and be more relaxed.
- When I'm really discouraged and I'm like "what's this life anyway", I tell myself that life goes on and always ends up bringing its beautiful moments. Moments of discouragement, as the moments of happiness, are only temporary.
- I feel good when I can help research or cancer victims: I give money to the Roparun because I know many colleagues who train all year long to be able to run this marathon. This is the longest marathon in the world, between Paris and Rotterdam, and benefits are used to improve the quality of life for patients in terminal stages (among their achievements, they built housing nearby a hospital for parents of hospitalized children).
- I went to the pool in bikinis. No one ran away screaming. No, I do not look like Elephant Man. I have a scar, okay, a very large scar, but no one looked at me with disgust. It's not as terribly ugly as I can think - it's just a mark on the skin.
- I started making a list of ten most beautiful things I would like to do in my life. And now I will take each one dream after another and see how I can achieve it: How much will it cost? Whom shall I go with? When and where? My dream after my first chemo was to be back skiing in the Alps. It's done. Wonderful memories for me, my son and the family who accompanied me. The next dream is planned for after my next chemotherapy, in October and the third will be next summer, in one year. I have already a lot of fun to prepare it.