"That one ovary that is left gives me my period every month and I see it as a super organ."
- Léa Tirabasso
Unforeseeable labelling
As we experience events and people throughout our lives, we tend to wear many different labels. Some are given to us, some we own, some we choose to add and some we choose to remove. We live in a world where labels are tiring for some and imperative for others and many of us have, or will at some point battle with what we want to be called because of how we wish to be seen or represented and received.
But what about those labels that we don't ask for? Those labels that cut deep and leave life-long scars? The labels that are a reminder of what we have had, and what we have lost. Belonging to a new group of people and joining a club that we never thought we would be a part of... what about those labels?
Orphan
Widower
Cancer Survivor
And what about cultural stereotypes? Being seen or received with a preconceived notion because of the country you were born in. I am writing here to lot of the British population. A population regards as; repressed, un-emotional, reserved and self-controlled. A culture that doesn't like to get naked in the changing room, a culture that sticks to traditions, a culture that doesn't like to talk about difficult topics; and with television programs like Naked Attraction and Embarrassing Bodies I'm not surprised people don't want to walk into their local GP to ask questions about their lumps and bumps.
And then I come along wanting to talk to you about cancer.
Most people who come to see me, come to see me when they can't take the pain or discomfort anymore, when it has become too much of an annoyance or they physically have no choice. But why are we waiting until the symptoms are 'getting in the way' of our lives? If I said that back pain (along with other symptoms) is a symptom of cancer would you monitor your back pain more consciously or cower further away from seeking help? Why are we not being encouraged (by the healthcare system) to monitor and maintain our health as a preventative measure? And not just by healthy eating and regular exercise, but also by touching ourselves, visiting gynaecologists and getting regular blood tests. The UK National Health Service is one of treating symptoms and it does it well, the focus isn't about preventing cancer but if earlier detection can equate to a much higher chance of survival, it sounds like a no brainer?
Regular health checks = higher chance of early detection 🤷♀️
Are you aware of your menstrual cycle? Are you conscious of your flow? How heavy? How painful? Are you touching yourself enough or at all to understand better how your vulva feels, how your labia feels or how your cervical mucus changes throughout the month in order to know when there are abnormal changes?
Hard fact is... Statistics are showing that in the UK 1 in 2 of us will get cancer at some point in our life and I wish I could tell you a clear statistic of the amount of people who survive but the reality is that it is just not that simple. However, with more and more people surviving for longer, the numbers are rising which is very positive.
Inspiration
I had the absolute please of speaking to a phenomenal human being. She is a daughter, a mother, a wife, an inspiration, a teacher, a fighter and a friend but not always in that order. I was honoured and privileged to speak with her about her experience with Cancer.
Her name is Léa Tirabasso (She/Her) and she is a force of nature.
Léa comes from a family where 14 people before her have been diagnosed with cancer. 2 who were recently diagnosed with having the same cancer as her (but in their testicles). Knowing this information Léa was fully aware that she was likely (but not sure) to live through the experience herself at some point.
Léa did and is possibly continuing to move through the various stages/phases of cancer treatment/survivorship - whether that be physically, mentally or emotionally. Her experience began in 2012. 18 months after she started experiencing symptoms of Dysterminoma (germinal cell cancer) a rare ovarian tumor which accounts for less than 1 percent of ovarian cancers. Léa would then go another 4 years before being diagnosed.
In conversation with Léa
Serena: I have a couple of questions but nothing really specific, I mainly would like you to just talk. I want you to take the space. I don't think there are enough people speaking about their experience. Nobody knows about the actual experience as each is so different and nobody knows what they are going to go through until they are going through it.
And you are so young.
Léa: Yes I am, the majority of people think that gynaecological cancers only happens to women who are post-menopause but it doesn't. Gynaecological cancers can happen to women who are pre-menopausal and there should be a gynaecological check up every year. I don't understand why in the UK we can't have a gynaecological check up every year. It's something I'm so angry with. So many people do not know that their vulva is not their vagina so they will go to the doctor and say my vagina is hurting when they mean their vulva. So then the doctor is not going to check the vulva. You don't say my eye is hurting when you mean your nose... and people are being misdiagnosed like that. Not knowing your anatomy is dangerous."
Serena: So you say you don't understand "why in the UK". Do you think this is a cultural thing?
Léa: Yes you're probably right there is probably a cultural aspect to it. In France we have a gynaecology check up once per year.
Serena: So when did this all start for you?
Léa: For me I was in Germany at the time. I was having pain in my lower belly but I could never really explain where the pain was. I was experiencing pain during intercourse and I was bleeding in-between my periods. I went to a doctor in Luxembourg to get checked who said that I was young and healthy and 'everything is nice and pink in there' (I guess she was talking about my cervix). But the pain continued and the bleeding between my periods continued. I was bloated but I thought it was because I wasn't eating well enough, or maybe I was eating too much gluten and because I was dancing intensely for 2 years I thought it was all linked. And then I came back to the UK and I go to the doctor, who sends me for an ultrasound.
Serena: What are the results of the ultrasound?
Léa: I get the results back and there is a 4.7cm mass on my left ovary.
There is a very long process for Léa to get her results. Her ultrasound appointment had to be pushed to another date and the results took a month to come back. A same day blood test result took 2 days to arrive which was already a long wait as it was booked for 6 months after her ultrasound appointment. It's because of this that Léa flew back to Luxembourg to get the opinion of 2 doctors and an MRI. Should this tumour be malignant it could put Léa at Stage 3. The CA-125 blood tests came back clear (it would later turn out that the blood tests did not correlate to the type of tumour that Léa had) but regardless, Léa needed to have the tumour removed as it couldn't stay in the body, so she was scheduled herself for surgery 3 months later where they would remove the tumour. Léa's mother worked at the hospital where Léa was being treated in Luxembourg, so with a sense of trust and serenity in this fact, and with the UK health system taking so long between appointments and delivering test results, she decided to continue with treatment in Luxembourg.
Léa: The doctor said that they would only need to take the tumour but when I came around, I asked if they got it and he said they had to take the ovary because the tumour was stuck to the organ.
Serena: How was that for you?
Léa: The first thing for me was the mutilation I experienced. I didn't know yet it was cancer but having an organ taken (like your uterus or an ovary)... I never knew that those organs were so emotionally charged. I never felt violated because I trusted him so much, I trusted my doctor, I took my body and I gave it to him for this operation, but I felt mutilated, I felt my femininity had been mutilated. I had huge scars and I had lost so much weight.
Léa's cancer was so rare and specific her tumour had to be sent to Paris. The results are given to her but not by her doctor. She sits in front of a stranger who delivers to Léa and her mother, the news that the tumour is malignant.
Léa: I start crying, I don't understand a word of what he's saying. That's why we need patients to go to these appointments with either a nurse or someone from their family who is going to take notes because the patient can not hear anything. All I could hear was blah blah cancer, blah blah stage 1. You become this emotional wreck, it's like someone telling you you're going to die.
So after the tests for metastisies I am waiting for a month to know whether I am going to need chemo or not. When I get the results I find out that I don't need chemo and that the operation was enough and that I can have kids naturally.
It's really strange because during this month of not knowing, I remember living life so differently. I remember being in Germany and feeling the wind on my skin and looking at the sun. You're alive and you understand the value of life, you don't live life suddenly above it. You sort of... penetrate life."
The diagnosis can be horrendous for women, it can feel like a death sentence. So many people hear the word Cancer and they think that their lives are over but it's not always the case. There are a multitude of treatment options available and an incredible amount of advice available online; at GP's, at hospitals and at numerous charities. Léa had her tumour removed and the cancer had not spread to any other tissue in the body, however the trauma of both the surgery and the diagnosis still reside in both Léa's body and her mind to this very day. And life doesn't stop. Even though Léa didn't need to receive any further treatment after the removal of her ovary, life did not pause for her to take a breath.
Lea: I had a diagnosis and then a month later I didn't need treatment and then a month later I was getting married then a month later I was opening a show and then a few months later I get pregnant but I have a miscarriage. And that was when I thought ok... You have to take time to make peace with your body again.
Serena: You had a miscarriage?
Léa: One miscarriage.
Serena: How was that for you?
Léa: There's a dislocation between your mind and your body. Suddenly you become 2 things. You are not your body because your body has mistreated and betrayed you. That body is dysfunctional or something in it became dysfunctional. That body is against you, is doing something against you, so your body isn't you anymore and I really needed to make peace with it again. So I did some craniosacral therapy... and it saved my life.
Serena: You turned to body work?
Léa: "Yeah I keep saying craniosacral saved my life and I really mean it. It really reconnected me with my vital energy."
Serena: Okay so how do you relate to your body now.
Léa: I think there are two relationships with my body. Firstly (the most positive one) I'm grateful that it still functions and that I'm still alive and that I'm healthy now. I'm grateful that - it's horrible to say it this way -but it gave me 2 beautiful kids so I'm grateful for it. And at the same time (probably another less positive relationship to my body) is what is going to be my next cancer? I'm really cynical about it, I'm really sarcastic but I'm also... waiting for the next one."
Serena: "You don't believe that it's over?"
Léa: No, maybe because , (and it's terrible) because maybe I'm creating it."
Serena: Oh
Léa: Yeah I know right? But I guess in my family there have been so many cancers sometimes I think... You've done it, you've had yours, it's done. And sometimes I'm like, y' know... okay what next?
Serena: How do you feel now a part you is missing? Do you feel any particular way to your scarring or to your body? Have you reconnected to your reproductive system? Do you feel a connection anymore? And as a dancer, are you moving from that place or are you moving from a different place.
Léa: I'm moving from that place, I mean it feeds me with so much energy. It's funny 'cause when I hadn't grieved that organ I used to visualise this area missing an organ like a black hole, like an empty space. Or if it wasn't empty it was filled with pain and death. My body had created death and then I had a miscarriage... Then my body created life. That one ovary that is left gives me my period every month and I see it as a super organ. At the very beginning it started from feeling mutilated and feeling empty but now I'm strong about it, I feel strong about it.
Thank you Léa ❤️
For more information on ovarian germ cell cancer click the link below
Léa's work is currently touring and can be seen in France from July 10-20 (excluding the 15th) For more information about Lea and her work, click the button above . You can also watch the trailer for STARVING DINGOES below.
STARVING DINGOES
10 - 20 July 2022 / 19:00
(Off on the 15th)
Les Hivernales, Centre de Développement Chorégraphique National d'Avignon (FR)