“I can’t face the fact that this might end badly.”

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Sorsha: “We have had bizarre months. I have been having trouble with my left ankle for a long time.
I used to play football at a high level and often got kicked in the ankle. At one point there was a lot of moisture in it.”
Anita: “You were about fourteen or fifteen years old.
Ultimately, you had surgery on that ankle and a benign tumor was removed.”
Sorsha: “Nothing dangerous, they said at the hospital. Difficult, annoying, but just learn to live with it. Until last year I felt something growing. My ankle and leg became increasingly swollen and painful. I thought I should have it checked again. In December I had an MRI scan and when the doctor called a week later, I already knew: something was wrong, otherwise she wouldn’t call.
“Is it cancer?” I asked. It turned out that I had a sarcoma, an aggressive and rare form of cancer. There was a tumor sixteen centimeters long in my lower leg. My leg had to be removed.”
Anita: “Our two sons were abroad. We didn’t want to tell them over the phone. They were back home at Christmas and you told everyone.”
Sorsha: “It’s so hard that you know you’re going to scare others. That they will be sad. Before Christmas I had cancer and had to have my leg removed. Okay, bad, but doable. After Christmas I received the results of the PET scan, the cancer has spread to my lungs. I could keep my leg, there was no point in removing it anymore. I had to have radiation and then chemo as soon as possible. My life expectancy is a few years, if the chemo doesn’t work, a few months. Before Christmas I was an ordinary girl of 29 with a nice job at Libelle TV, after Christmas I was suddenly terminally ill. At my final destination, because with a sarcoma things can go quickly.”

Powerless

Anita: “I was shocked when we came to see you yesterday morning and you had gone to the hairdresser to have it cut very short. I knew it was coming and now suddenly it had happened. It is not vanity, but loss of your identity. That nice hairstyle that reaches your shoulders belongs to you. That short face suits you too and of course you are still our Sors. But it is so not what you want as a mother. I want to protect you and save you from everything terrible in the world, but I can’t do anything to stop it. Incredibly powerless, that’s how I feel.”
Sorsha: “The day before yesterday, family and friends organized a very fun and special day for me. We all had our picture taken in Volendammer costume. When I look at that photo now, I fill up. I feel happy and sad. My hair is gone now, but I still rock it, even bald.”
Anita: “It will disappear two to three weeks after the first chemo, they said. So that’s exactly right. During that nice day I saw that you had many strands in your hands when you were going through your hair. Oh no, not now, I thought.”
Sorsha: “I always loved running my hand through my hair, throwing it in all directions. That was really my thing. And now I suddenly had strands in my hands. Don’t show anything, don’t touch it, I thought. Let me have that one nice day. But yesterday morning my hair had become a kind of helmet, full of bald spots. So degrading and misogynistic. But if I want to live, I need chemo. Then continue without her. Thanks to crowdfunding, I received a beautiful wig, but I also think it is a step to wear it, because it is not mine. It’s so sad that I have to get sick to stay alive now. Because I’m not getting better anymore. If the chemo works, I will continue to receive it for the rest of my life. Including all side effects.”

Something to hold on to

Anita: “You are very realistic. The step you took of facing the fact that this might end badly, I can’t do that.”
Sorsha: “You always have hope.”
Anita: “Yes, I hope, I trust that the chemo will work. And that you don’t need chemo for a while, so you get your hair back. Maybe not the height you had, but you will have hair again. And if you do need chemo again after a while, hopefully a milder one. That you can lead a normal life again, maybe even work again.”
Sorsha: “I went to the editors of Libelle to tell them that I have cancer. I didn’t know at the time that it had spread, two weeks earlier I was still walking around there and there was nothing wrong. Yet the editorial office suddenly felt like a world that was no longer mine. As if I knew I wouldn’t be back for a while. The reality is that there is a scary disease raging inside me and there is a chance that I will not make it. This chemo really has to do its thing, otherwise it will end.”

Something to hold on to

Anita: “When I think like that, all I can do is cry. Just like the days after you told us things were wrong. You are my baby, my sweet child, I can’t lose you, can I? That thought is unbearable. My hope is my support, otherwise it is impossible. I hope there will be a better treatment, perhaps a trial in which you can participate. Just something that saves you.”
Sorsha: “I sometimes find that difficult, because isn’t it against my better judgment? I realize that I could die quickly. That’s my way of dealing with it; take the biggest blow and then start fighting, because of course that’s what I’m going to do. I don’t feel peace, that’s not the right word when it comes to cancer, but I do feel a kind of ‘this is what it is’. I just know I’m not going to grow old. At the same time, I think it’s great that you have that hope. Everything you hope for, that’s what I want to go for.”
Anita: “You take the worst into account, I prefer to keep hope. As long as there’s life there’s hope!”
Sorsha: “Yes, that’s what I focus my life on. Since my time may still be short, I will do what I want to do. Meeting up with friends, going to the pub, dinners, especially lots of fun and love, ordinary things that suddenly become special. Look at me sitting in a cafe on a weekday evening. But I do it. Then tired the next day. That’s my way of keeping it going.”

Urgency to care

Anita: “You are incredibly independent, always have been. You get chemo every three weeks and in the days that follow, Dad and I would prefer to take you into our home, because you can be so miserable then. I understand that you don’t want that, but I have an enormous need to care. Because it’s about the only thing I can do for you. So we often come by, around the end of the morning. Because we know that you are not worth much in the morning and then we make something to eat. Can you lie down comfortably?”
Sorsha: “It’s super sweet. I know the time will come when I might live with you, but not until the end. When I can no longer be alone. Now I want to live the life I had as much as possible, even if everything is different.”
Anita: “I admire how you do it. You are super strong.”
Sorsha: “At first I was sad. Now I’m mostly angry and I’m not giving up yet.”
Anita: “I recognize that. It’s all pointless, but sometimes I want to ask the doctor what they missed. How can something that was good suddenly become so bad? Getting angry, blaming someone.”

Urgency to care

Sorsha: “Yes, I have that too. I asked about it, but the sarcoma appears to be different tissue than the benign one they removed. It is very rare for a benign tumor to become malignant. But maybe I’m the one that this is happening to. If I had been there sooner, it might not have spread. But that remains a guess. That’s okay, because there’s already so much going on in my head. Why me? What is this needed for? I’ve worked quite hard on myself. I was in balance and now I get this.”
Anita: “People always come to you with their problems, you are a good listener.”
Sorsha: “I really want to find a great love, to become a mother. Dad and you are my role models, you still love each other. It’s hard, but maybe that’s not for me. Who wants to date someone with cancer? Fortunately, I believe there is probably someone walking around for me.”
Anita: “I just hope the treatment works. And may you have a long and happy life. With that love and maybe one day a child. You do not know.”
Sorsha: “No mom, that’s true. It would be great, who knows.”

Sorsha took a picture with her mother to capture what she looked like before chemotherapy

Styling: Sandra Kissels | Hair and make-up: Carmen Summers

The article is in Dutch

Tags: face fact badly

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