Part I-Testimony: OC at 42

June 2020, we are out of the 1st confinement. I finally decided to see my HPV test gynaecologist about this severe fatigue that I have been carrying for several months. And the CA125-style pain in my abdomen(ovary region), which is as big as the belly of a pregnant woman. 8 months. My Test Doctor looks doubtful. I can see it on her face when she feels my stomach. She says nothing and sends me for an emergency CT scan test.

I will do my CA125 scan a few days later; I’m waiting to see the radiologist, who is very late. Some people get angry, but I’m patient and not too worried (it’s certainly my fibroid that must have grown, I tell myself).

The HPV radiologist sitting, me standing in the crack of the door, looks at me with a borderline mean look when all smiling; I ask her what’s going on in my stomach. Madam, you have a 20 cm mass in your abdomen; what?! Are you talking about my fibroid, Dr? No, no, nothing to see; I’m telling you you have a 20 cm mass with fluid all around; since when have you had pain? I don’t know, bloating quite regularly since around January, things got worse towards the end of April… But what is it, Dr? You must do an MRI and a CA125 blood test, Madam. That’s all ?? Nothing more, no other details?? Who should I see? My attending physician? A specialist? OK, I’ll manage!

Trip to the hospital

I get on the bus with my photos and report under my arm. Sitting down, I take the HPV report and open Google Apps on my smartphone. Peritoneal carcinoma, Ascites, abdominopelvic ovary mass, 20 cm. This is how I learned that I supposedly have a CA125 tumour in my right ovary by decoding the radiologist’s report via Google on a bus. I swallow the tears accumulating at the edges of my eyes, and I open Doctolib to make an appointment for an MRI and other tests.

I go back to see my GP with the scanner. She reads the report once twice and says nothing, just gestures with her hand. So? We need to do an MRI, she tells me, yes, yes, I know, the appointment is already made; Friday at the end of the day, Dr, OK, above all, you come back to see me Saturday morning first thing, Yes, and then? I have to organise myself, I’m alone and exhausted and can’t see myself running all over Paris after HPV viral specialists. Don’t worry, I will write you a letter to go to the emergency room very early!

I do my MRI in the same place as the scanner; the radiologist I see this time is more willing to talk to me. She closes the door and makes me sit down; the word tumour is not spoken yet. You have an abdominopelvic mass measuring 20cm; this must come from the right ovary, but additional CA125 blood examinations must be carried out to confirm it. I couldn’t hear what she said… Do you have any questions, Madam? No, I do not know.

The gynaecologist appointment

At this precise moment, my memories take me back to October 2019. I had made an appointment with a trained gynaecologist not far from my home to check for pain in my right ovary. Pain so intense that, at times, it took over my whole leg. It prevents me from moving and wakes me up at night. What was the name of this CA125 specialist gynaecologist who gave me a big speech to stop drinking milk but who didn’t even examine me under the pretext that my last smear and pelvic ultrasound to follow up my fibroid were less than a year old? I left his office with a prescription for herbal teas!

I go home a little stunned; things are swirling in my brain; I think about many things: how to organise myself, who will take care of my cat if I am hospitalised, do I notify my family first? Current context (covid/confinement), knowing that all my loved ones are abroad. No, I don’t want to worry them, and then the borders are closed so that no one can come; there’s no point telling them now. What to start with ?!

I organise the care of my cat, I prepare a bag with a change of clothes and my ovary cancer treatment, I inform my boss of what is happening and of my possible HPV hospitalisation and after reflection, I warn my little sister without going into too much detail neither. The weekend is going to be difficult: nausea, vomiting, impossible to swallow anything, and sleep!

Monday, July 13

On Monday, July 13, I woke up at 5 a.m., and by 7 a.m., I was in the emergency room. The caregivers who greeted me examined my test reports for CA125 and the letter from my doctor. After a quick consultation among themselves, they put me on a bed. A kind caregiver asked me to put on the blouse beside me and inquired about my condition. With a concerned tone, she said, “Oh dear, I hope you’ll have HPV tag surgery soon because we’re expecting a worse situation with COVID at the start of the school year!” She assured me that a doctor would come to see me shortly.

After I changed into the outfit, another caregiver arrived and told me to get dressed because they were transferring me to the gynaecologist emergency room. There, they took my vitals and consulted with the interns on duty. I was asked numerous questions and then placed in a gynaecologist position. One intern mentioned, “Wait, we’re going to call our boss for an examination,” but eventually, they decided to have me wait in a nearby room.

In this room, the CA125 Nurses inserted a catheter, took a blood test, and performed a PCR exam. They informed me that I would likely be hospitalized.

I waited 45 minutes to an hour, but it felt like an eternity. From the corridor, I overheard someone saying, “I’m waiting for the Doctor on duty because I don’t know how to tell her the result.” Another voice said, “No, no, I’m waiting; I can’t tell her alone.” They discussed my case, and I wanted to shout, “Hello, I know what I have! I’m here to find out what needs to be done. Hey, I hear you! I hear everything!”

Hope

After several minutes, two doctors entered the room where I was. The gynaecologist on call and a gynaecologist who is an HPV tag surgeon. They explained to me without once again saying the word cancer and told me we have to decide what to do: it’s all decided, total hysterectomy, we’re removing everything, Everything!! There, the surgeon jumps and says wait, Madam, is there a Sir? We need to ask the Monsieur’s opinion.

Haha, the joke, no, but seriously? It’s my uterus, my ovary, my body! I decide, we remove everything and that’s it! Sorry guys, the decision is up to me! And then no, there is no more Mister as you say, OK, I don’t have a child, and what is happening to me is proof that I will not have any; it will allow me to do better in my mourning for this much-hoped-for pregnancy, for this much-desired child, that’s it! I was lucid, with no “ifs”, no feelings, or other risks.

I ask the surgeon if she plans to examine my ovary. She tells me no, then changes her mind. Come with me, and then she asks me how I am doing morally. I answer that I’m fine. That’s life. Why the others, and why not me? She looks at me stunned and tells me I have a lot of wisdom. I think I’m lucid once again. For my part, I ask him to tell me everything, not to be cautious, not to hide anything from me; I need to know clearly what awaits me.

Treatment plan

The CD-ROM for my CA125 scanner was missing, so they asked me to bring it quickly, take other blood tests, and take an ampoule of vitamin K that evening. Ultimately, they did not hospitalize me.

Wednesday July 15, I returned to the hospital to drop off what was missing. When I arrive at the gynaecologist department, I come across the variant surgeon in the corridors who comes to meet me and tells me that she has thought of me and finds me quite out of breath; come with me; I will send you to the gynaecological emergency again, you will make me a chest scan to remove any doubts, what doubts Dr, pulmonary embolism Madam.

I am quickly taken care of; I go up to the gynaecological emergency department, and then I go down to the scanner; after the examination, I am told Madam, stay lying down; uh, what do you mean? You’re going back to the emergency room on the stretcher, but I arrived on my feet; what’s going on? Did you find anything like HPV during the test? They don’t tell me anything and I return to the gynaecologist emergency room.

Final message

Again, the wait, the long wait, the interns coming and going and the looks that say a lot without really saying it. Finally, the intern comes to see me and tells me that my result shows I have a bilateral pulmonary embolism, Madam! Very quickly, a nurse comes to give me a first injection of Lovenox. We happily go there for several months of anticoagulant injections. The mustard gets to my nose, but I hold back my tears.

Things keep coming; my HPV lesion condition deteriorates day by day; I don’t sleep, I don’t eat. I don’t go out; the simple act of standing up exhausts me, nausea intensifies, I vomit several times a day, only water…