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This is how I faced the disease? A Story of Courage with HPV

“You arrive at the HPV diagnosis centre after confusing months. Your relationship with life changes; you enter the world with a sick passport. This is why having doctors who can guide and support you is essential.” The testimony of Silvia Gregory, vice president of Acto Italia, during “Dialogues on the future – CA125 Ovarian Health”, an initiative of the Health hub of the Gedi Group on World Ovarian Cancer Day. The director of Salute, Daniela Minerva, hosted the event.

Gabriella’s story (war of movement and trench warfare)

I’m not a female whim…I have ovarian tumours!!!!!! I felt something in my body wasn’t working in July 2009 at 58.

I was on the train and going to an important appointment. My son and his girlfriend were going to discuss their medical thesis. I would listen to them with a nice colourful bouquet and a camera.

But something in my gut wasn’t working—for a while, to be honest. It was a period of HPV Virus stress. The end of the school year and the final exams. During the oral exams one day, I felt terrible; I vomited. As in times of stress, I ate disorderly, exaggerating a little with sweets.

Soon, I would finally go to enjoy my holidays with my husband in the Oltrepò. Our bike rides and more attentive meals would make me forget everything, and like every year, I would recharge my batteries.

Despite the diet, relaxation and bike rides, things had not improved:

A pain in the lower right, which worsened with compression… it looked like an appendiceal disease. I had finally decided to talk about it with my husband (doctor). We returned home and did the CA125 and further tests and visits.

After an abdominal ultrasound, a gynaecological examination with a transvaginal ultrasound, and an HPV PAP Swab kit, the gynaecologist said, “Everything is fine; these are not typical gynaecological pains. Investigate elsewhere.”

I then returned to the countryside to continue with the diet, psycho-physical rest, and occasionally taking antispasmodics, which seemed to have an effect. Still, the strange pains recurred now and then.

Among the blood tests, CA125 was slightly increased. The gynaecologist said that it was probably a “non-specific” increase.

In any case, check again

After one month, the CA125 level increased to 100; the abdominal CT scan was negative except for a slight collection in the Douglas pouch, which the gynaecologist did not confirm at the transvaginal ultrasound check: “Come back in a month and in the meantime, go to the Gastroenterologist.”

The gynaecologist maintained that there are infinite reasons why there is an increase in this marker, so much so that after the visit, leaving the office, my husband told me, “We continue to look; however, the most fearful thing, ovarian tumour, we know he excluded”!

I had a colonoscopy, which caused me a lot of pain but revealed no lesions.

I remember thinking that I was exaggerating a banal ailment, that I was suffering from a psychological problem, an ailment present only in my head.

After we scheduled a checkup, we heard from a Medical Oncologist friend who suggested we do an MRI and then—which turned out to be negative (except for the modest liquid in the Douglas)—a PET-CT scan, which turned out to be substantially negative.

In the meantime, we arrived in December.

The pain occurred intermittently, even leaving me with weeks of well-being and then moving under the diaphragm on the right.

I remember that while watching a film, I absolutely couldn’t laugh. The pain on the right had become intolerably worse.

In the end, “to get to the bottom of it,” on January 11, 2010, I underwent an exploratory laparoscopy at a university surgery.

Despite the reassurances received from the operator after the CA125 investigation (my appendix was also removed), the histological and cytological examination (on the appendicular stump) gave a certain outcome: papillary serous tubo-ovarian carcinoma, grading III.

Pain has a new meaning

My feeling of pain was, therefore, real and concrete even if I always had a lot of difficulty describing it to the Doctors I gradually met, who listened to me sceptically.

It wasn’t my imagination that gave substance to who knows what psychological problems or unresolved fears or childhood traumas!

Too bad I wasted so much precious time!!!

Jokes of the Night (Doctor Jekyll and Mr.Hyde)

Among my roommates at the University Clinic was Giovanna, who had undergone intestinal cancer surgery. She was an open and conversational woman during the day but… completely different at night. Mr Hyde, in short, became Doctor Jekyll at night.

For various reasons, he didn’t let anyone sleep in the room. After a few days of hospitalisation, her sympathy had weakened a little and some of her roommates.

There were 6 of us – who openly questioned her.

During the night, she continually complained of pain, and she didn’t give the nurses a break. Still, during the day… she was often on the phone, staying for a long time and making us all involuntary participants in her conversations. Then, when some relative arrived – the most present of hers was her daughter Giorgia – her phone calls multiplied: her cell phone was always in operation to reassure everyone about her HPV Health, to ask for news of her relatives, promising visits, organising lunches, planning meetings.

I needed to understand who the real Giovanna was.

Was she the one who didn’t hold back at night from expressing all her evils and discomforts or who hid them during the day in a flood of reassuring phone calls to an infinite number of people?

Her daughter Giorgia then left me perplexed. She was also busy with long phone calls in which she involved her mother. Did you help the patient or exhaust her? Was it an effective way of being close to her, supporting her in her illness, and her desire to get well?

It was hard to put up with them. Mother and daughter, given that they prevented us from resting day and night. Still, despite everything, solidarity prevailed between people and family members who share the same CA125 type of illness and who express their experience of anxiety and pain.

Some tell everything about themselves, and others keep everything to themselves. Certainly, none of these behaviours are the right ones, but it is certainly difficult to talk about your HPV illness. Also, find someone who listens to you with true empathy.