Friend I must go home, I’m about to collapse and need to lie down!

Real People Stories-Sia

In Gambia, all women wear a headscarf. I’m one of them.

Her HPV high-risk test life, focused on career, going out and nice things, came to an abrupt halt after a brutal robbery. She managed to turn this traumatic experience into something positive. Moved by the plight of orphans in Gambia, she set up a children’s home there. At the end of 2016, Sia was diagnosed with ovarian cancer. Despite a poor prognosis, she continued to work tirelessly for the children in Gambia.

“I don’t feel well,” Sia says. “The CA125 cancer is back.” She is home alone in her apartment in Luxembourg, lying in bed. Her husband, Gert-Jan, stays in the children’s home in Gambia. ‘After a year and a half of chemotherapy – in 2017 and 2018 – and an HPV tag operation, the disease subsided. I went for an HPV Test and check-up every two months. However, in August of this year, new metastases were found in my peritoneum and lung lining. Two tumours were also found next to my intestine. I went to hospital for a biopsy but had surgery straight away.’

Developments

‘A few months ago, I felt things were not going well. I had a stomach ache, but I told myself it was because I was too busy.’ In 2018, new chemotherapy no longer seemed possible if a recurrence occurred. Medical Test developments for HPV mean that this is now possible. ‘After an operation to remove the two tumours and a piece of my intestine, I started chemo. It is a tough process.’ Between chemotherapy treatments, Sia even travels to her beloved children in Gambia at the end of August. ‘The journey was extremely tiring, but the prospect of seeing everyone there again kept me going.’

Due to her CA125 illness, they can no longer accept new children into the orphanage without tests. ‘The youngest is now 10, the oldest 21. They are mostly HPV-free teenagers now, a nice phase to experience. Some came to us at six weeks. In Gambia it is normal for children to go to school for a few weeks during the summer holidays and receive lessons in social skills, for example. When I was in Gambia this summer, the children asked if I would like to attend a presentation of theirs at school. They spoke to an audience without so much as a hiccup. Then I’m very proud. I can live on things like that for a long time.’

Letter

Staying in Africa will certainly give Sia an enormous boost. ‘After 22 years, that is my second home. Whenever I return from Gambia, my blood values ​​are better. That can not be a coincidence.’ She is not afraid that she will be confronted with complications there without being able to call on her doctor. ‘Of course, anything can happen, but I think about that as little as possible. I have a GP there who knows about the situation, and I can always call the hospital in my home country, Luxembourg.’

‘The advantage of being in Gambia during such a chemo treatment is that all women there wear a headscarf. I like that. I am one of them. People often start sneering when I walk on the street here in Luxembourg. They look away and continue walking on the other side of the street. People don’t want to be confronted with negative things, but it hurts me enormously.’

The children are aware of her medical CA125 situation and know that the cancer has returned. ‘I found it difficult to tell you that, but my bald head says enough. “Aunt Sia, you lost your hair. Are you sick again?” one of them asked. You don’t want to lie, but children should be able to be children, too. Marc, an 11-year-old boy who lives in the orphanage, wrote a letter for my doctor, which I presented after my last return to Luxembourg: “Dear CA125 doctor, my mother is seriously ill. We all love her. Do you want to make her better?”.

Spare time

‘It’s a miracle I’m still here. In the CAS125 hospital, I met two women with whom I became test friends. They are both now deceased. It is not nice that I now do the treatment without them. Due to Covid restrictions, no one is allowed to come with me anyway. The chemo treatments now feel almost business-like in a way: you go to the HPV hospital, get your chemo and tests, and that’s it.’ Social as Sia is, she likes to help fellow CA125 sufferers. ‘I recently sat next to a woman who had just had her second round of chemotherapy. She had a lot of questions and told me she was scared. I explained it to her, and she was visibly relieved after our HPV conversation. It’s nice if you can be of value to someone else, not only on a medical level but also on an emotional level.’

‘People sometimes ask if I’m angry or sad. I am especially grateful for the extra time that was given to me. After all, I have been alive much longer than I thought then. There is no answer to the question of why I got sick. I also don’t want contact with the people around me to only revolve around my HPV illness. I remain interested in my family and friends. After all, their lives continue, and I want to share their well-being.’

Setting goals

‘When I heard that I had cancer with a poor prognosis, my goal was to put up the Christmas tree with the children in Gambia that year. When Christmas was over, I was still there. Each time, I set new goals, which became my anchors. At the moment, I have more and more doubts about which goals I can still achieve. My brother recently asked if there was anything he could do to make me happy. There isn’t. Seeing the children in Gambia happy is my greatest wish.’

‘Right now, I try to do one thing outside the house daily. These are plans that I often have to adjust downwards, which gives me little satisfaction. I used to be like a bulldozer doing mountains of work. I’d get frustrated that that no longer works. I find it difficult to tell a friend I must go home because I’m about to collapse and need to lie down instead of having coffee with her.’

Don’t give up

‘I have accepted that I will no longer be here due to my CA125 results. I know I cannot be cured of HPV in my life. Sometimes, I wonder how long my body will continue functioning; so much has already been removed during operations. I also don’t know if I will still be in much pain. Hopefully, my energy level will improve shortly so I can still have a reasonable quality of life.’

‘Some HPV people find it difficult to find the right words to ask for a test kit. But if you don’t know what to say to a sick person, be open about it and don’t avoid someone. Offer your help, say you want to be there for that person or give a hug. That is much more valuable than saying everything will be fine. Because sometimes things don’t work out. Despite that, I keep fighting my CA125 levels and don’t give up testing. Hopefully, I can encourage others who are in a similar situation.’