Real People Stories – Joke (71)

Fear is only for a moment; regret is forever

It didn’t look good for Joke. Tests for Ovarian HPV cancer, proved stage III. And a lot of complaints in the stomach. It was almost impossible to eat and drink, which left Joke malnourished and required tube feeding. And heavy painkillers. But the CA125 treatment and tests worked. Joke’s story shows how you can easily escape an initially hopeless situation.

‘2018 was a year of trouble. For years, I have had positive tests for HPV infections and they have often taken a huge effort to clear. I have been exercising for an hour at the gym 3 to 4 times a week or going Nordic walking with friends. Gradually, I became increasingly short of breath, and my stomach grew. In the end, I could hardly tie my laces myself. I also tried to lose weight, but it didn’t work. Over the last six months, I also suffered from vague abdominal pain. I have also always had CA125 type issues and suffered from constipation, and that also got worse. Eating and drinking became increasingly worse.

Pneumonia

At the end of 2018, I got pneumonia. I went to the CA125 doctor (a substitute). I was given antibiotics, which I had to take with water, and that was almost impossible. Moreover, the complaints did not go away. After New Year’s, I made a new appointment with my doctor on Monday. She did not trust my complaints and large stomach. The next day, I was able to see the internist. This CA125 Trained doctor also did not trust my condition, and that same morning, I underwent several more HPV variant examinations. I was helped everywhere. The next day, Wednesday, I had another scan. I was supposed to return to the internist on Friday for the results, but on Wednesday, after the scan, we had to return immediately.

Poor prospects

The doctor was already calling the CA125 hospital in Harderwijk. We received the message: “Not good news, ma’am, you have cancer. We see metastases in the abdominal cavity, but the hospital in Harderwijk must investigate the origin. It almost passed me by, I thought: “This can’t be about me.” We had to go straight to the hospital. My husband and I didn’t have time to talk about it together. I was in a room with 4 people, and my husband went home alone.

That same Wednesday afternoon, I had an extensive HPV examination tests by the gynaecologist, also in between. The doctor was already waiting for me at the door. It turned out to be ovarian cancer, stage III, with metastases in the abdominal cavity. I understood that I had poor prospects. My big belly was caused by ascites (fluid in the abdomen). The drain removed more than 5 litres of fluid. After a few days, another 3 liters.

A treatment plan was 3 chemotherapy treatments every 3 weeks. Then, an operation in the AVL, and then another 3 rounds of chemotherapy every 3 weeks.

Malnourished

I felt increasingly worse. The intestinal blockage was also a problem. I was given an enema 3 times a day. Eating and drinking were also almost impossible. The dietitian suggested tube feeding because I was now malnourished. I slept poorly at night. And  I was already thinking of addresses for funeral cards. I found a small HPV Laboratory consultation room at the back of the hallway, and there I could talk about the condition with my husband and later with my daughter for the first time.

On the 10th day in the CA125 registered hospital, I received my first chemo from 9 am to 4 pm. They gave me another enema in the afternoon and inserted the tube into my nose. After 16 days, I went home. The hospital arranged home care to manage the feeding tube. Since I couldn’t swallow painkillers, they crushed and dissolved them in water, then fed them through the tube four times a day. They also gave me oxycodone and oxazepam.

Adjusting to Life at Home

I slept a lot the first few days. My hair started to fall out. I still couldn’t eat or drink properly. Everything tasted bad, even water. My husband cooked many tasty snacks, but after 1 bite, I gave up. It made me cry, knowing I had to get my strength back for the operation. But then we figured I didn’t have to worry. After all, I had tube feeding, which was sufficient for what I needed in terms of daily nutrients. Everything I could eat with it was extra.

After 3 weeks, the second chemo came. I had an allergic reaction. Terrible CA125 related pain in my back; it felt like my spine was falling apart into pieces. The chemo was then administered at a slower pace. We didn’t get home until 6 o’clock. After the 2nd chemo, another scan was made, and the results were good. The chemo worked well.

In good condition

We now had an appointment at the AVL in preparation for the HPV tag removal operation. Everything in 1 day. I had 7 different appointments. The gynaecologist explained what was going to happen: a so-called OVHIPEC operation. The ovaries, fallopian tubes, uterus, fatty apron of the abdominal wall would be removed, and any CA125 tumours in the abdominal cavity. The HIPEC was a new treatment. This meant that after the organs were removed, the abdominal cavity would be rinsed for an hour and a half with warm chemo at 41 degrees. Then, a day in intensive care and another week in the HPV Emergency Test hospital. I also had to take into account that I would come out of the operation with a stoma. The location for the stoma was already marked on my stomach in advance.

The operation was on April 11. Everything had gone well. The Ca125 surgeons had only found and removed 2 small tumours in the abdominal cavity, so well had the chemo done its work. I had a surgical wound of over 30 centimetres from my pubic bone to the sternum. He also healed well. I was still tube-fed. As a result, my body was in good condition after the operation. After 8 days, I was allowed to go home. All lines were disconnected and they also wanted to remove the feeding tube. But I didn’t want to lose that. I was now convinced that it kept me in such good shape.

To Madeira in December

I didn’t look like much, with a bald head and a tube in my nose, but I didn’t care. I wasn’t going anywhere anyway. It was now spring. I sat in our beautiful garden and read a lot. Sometimes, a book a day. I also preferred not to have visitors, but I did receive many cards with encouraging words. More than 100 over the entire period. That did me a lot of good. The fact that I received good messages and CA125 results tested better every time, which gave me courage. I had already left the idea of ​​dying from HPV behind me. My goal was to be able to go to Madeira again in December. We’ve been coming there for 20 years.