Irene’s mother was a storyteller. A ‘real connector’, as Irene calls it. “She loved starting the conversation and was always open to other people’s opinions,” says Irene, who has now made it her job to spread the word about her mother. “It all happened so fast. Within nine weeks we lost her. She fought for her life right up to the last second. Even when she knew her chance of survival was less than one percent, she wanted to continue. That was typical of my mother. “
Pain in abdomen and lower back
Three years ago, Irene’s mother, who was called Cecile, first visited her GP because of pain in her abdomen and lower back. “According to the doctor, stress was the cause. My mother was advised to go to a physio and she did, but her complaints did not diminish. Later, a scan of her intestines was made, but nothing came of that either. With the science from now on I think: why did they scan just her intestines – and not her whole body?”
In the two years that followed, the complaints persisted and Cecile went back and forth for ways to relieve the pain. “At one point she said it might be gluten intolerance and she started a gluten-free diet. She always watched what she ate, but now she also tried to do everything she could to consume as little gluten as possible. It didn’t help. Her stomach remained sore and started to swell. She hated that because she had worked so hard all her life to keep her body in shape.”
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Because Cecile’s belly was getting bigger and bigger, the doctor thought that the complaints might be caused by a blockage in the intestines. “My mother was given laxatives for that, but they didn’t help either. She walked for a week with an enormously swollen stomach, until it really couldn’t go any longer and she was admitted to the hospital,” says Irene, who, when she heard that, was a nurse. was away for the weekend. “I remember her on the phone telling me not to worry, because she thought she would be home the next day. But nothing could be further from the truth.”
Later that week, when Irene visited her mother – who had to stay in the hospital for more than a day anyway – she could see from the doctors’ faces that things were wrong. “I started googling and saw that my mother’s symptoms matched those of uterine and ovarian cancer. I told my mother, but she didn’t want to hear about it. She was still convinced at the time that it was nothing serious. and that it would pass again.”
Tumor
Fluid was drained and an internal ultrasound was performed. The ultrasound confirmed what Irene was so afraid of. “It turned out that a tumor of no less than 17 centimeters was growing in my mother’s uterus. It had stuck to her ovary and after further examination, the doctors discovered that she also had metastases to her abdominal cavity.”
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The message hit like a bomb. “Yet as a family we remained optimistic. My mother always saw opportunities. Even now she did not want to worry too much about it and decided to look at the positive. The doctors started drawing up a treatment plan and she was hopeful that she would receive a suitable treatment. would find it that worked,” says Irene, who returned to the hospital a week later with her mother, father and twin brother. “We were told there that they really couldn’t do much more. According to the doctors, my mother was critically ill: stage four uterine cancer, an aggressive and rare variant.”
No appropriate treatment
The variant was so rare that the doctors could not find a suitable treatment. “My mother did not want to believe that and we requested a second opinion from the Antoni van Leeuwenhoek hospital. It turned out that chemo treatment might still be possible, because the doctors there saw that her body was still relatively strong. That gave us hope. “
Would she undergo chemotherapy? Cecile didn’t have to think twice about that. “She was 62 years old and wanted to stick to that for a few more years,” says Irene, who is still surprised that her mother became seriously ill. “We always thought that with her lifestyle she would live to be 90. She didn’t drink, didn’t smoke and was very active. It was an eye opener for all of us that my mother could also be struck down by such a nasty disease.”
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As time went on, Cecile got progressively worse. Interim surgery to make the tumor smaller was no longer possible: she was already in the final stage. Meanwhile, she was still waiting for her chemo treatment. “Because of corona and an abundance of other cancer patients, they had no place for her at a very short notice. The big belly remained, after which fluid was drained. That made the situation somewhat bearable, but the fact was still that she was critically ill. my mother regularly exercise, on the assumption that she could then start chemotherapy as fit as possible.”
While waiting for her chemotherapy, Cecile’s medical file was sent to the hospital in Maastricht, because she might still be able to participate in an American study, which increased her chance of a lifespan. “That sounded attractive, but if she wanted to, she would have to wait at least another week and a half and we didn’t know if she had that time, because her cancer was very aggressive and therefore spread quickly.”
Cancel treatment?
Although Irene was hesitant, the doctors were mostly positive. “They thought that my mother would at least last another week and a half. I myself thought: the sooner she can be treated, the better. In the end we chose to cancel the Dutch chemotherapy treatment and go for the American one,” says Irene, who relied on the doctors’ advice. “He’s a specialist so I assumed he could estimate it better than me. I thought it was a nice idea that I could at least hold on to something.”
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Weeks passed, but there was no news about the American treatment trajectory. In the meantime, Cecile’s health went downhill. “She needed more and more care and I stopped working. The discomfort in her stomach got worse every day. When it really stopped working, we called the doctor in Maastricht: he wanted my mother to come by for a check-up. After some research it turned out that the cancer had spread around her intestines.”
Last attempt
Cecile stayed in the hospital so the doctors could keep an eye on her. Irene visited her as much and often as she could. For two weeks, day in and day out. “Until the doctors brought the news I had been dreading all along,” says Irene, who remembers it all well. “I was sitting with my mother when we got the words that no one wants to hear. ‘We can’t do anything for you anymore,’ said the doctor. My mother did not believe it and asked: ‘Is there really nothing more possible?’ to which the doctor replied that her chance of survival was less than one percent. “Then I’ll hold on to that,” she said.
Two days after the doctors gave her up, they came up with a new message. “They were surprised that my mother was still so spry. They also said that they admired us so much for our strong attitude and positive energy. They decided to make one last attempt at treatment. My mother would be tube-fed to strengthen, so that they were able to surgically insert a stoma and still undergo chemotherapy. Although my mother could no longer eat and she was in constant pain, she was eager to try it.”
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Cecile started walking again to regain her strength. Every day a little, a little further every day. “She fought hard for a week to get somewhat fit again in the shortest possible time. Unfortunately, she got a pulmonary embolism and had to be on blood thinners, which meant that she was not allowed to have surgery for six weeks. She didn’t have that time. The tumor grew too fast and for the second time we were told that the doctors could not do anything more,” said Irene, who knew her mother would not live long, although she still had hope. “We enjoyed each other as a family as long as we could. She was home for a week and a half, after which she died in my arms.”
Cervical Cancer vs Cervical Cancer
By sharing her story, Irene wants to make other women, but also doctors, aware of uterine cancer. “Often this disease is confused with cervical cancer, where you can take a smear and rule out whether you have it. Uterine cancer is seen less often and less quickly and is therefore a silent killer. If doctors had discovered it in my mother at an earlier stage, she might still have been there now.”
Irene also hopes to leave something beautiful behind for her mother in this way. “She saw possibilities everywhere and was always there for everyone. I hope to take over from her in this way and at the same time want everyone to know what a beautiful and strong woman she was. On her deathbed she said: ‘Tell my story, because if you can help just one person with this, it’ll be worth it.” She left a note for my twin brother and me, along with an amount of money she had saved for us. The note read: “Give it and share it with a loving heart.'”
“My mother was my greatest asset. My buddy, favorite woman and role model. All I had to do was call and she stopped everything she was doing at that moment. Now that that has gone, I realize more well what a special role she plays. in my life. I miss her every minute of every day. I am sad, but at the same time very grateful that I was able to experience her unconditional love.”
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