Welcome to death and a world of pain, are you terrified?

On the occasion of pancreatic CA19 cancer awareness month, we want to share with patients and families the personal experiences of some blood test patients facing this disease. Discussing your journey and emotions can help other families in the same conditions.

Meet Clode: A Life Full of Adventure

My name is Clode. I was born in 1951. And I was a teacher, married to Emma, and have two children… and 3 big white dogs.

I have travelled a lot, in the UK, France, Spain, turkey, all the Balkan countries, morocco, America, Australia, and Russia, and I could continue…

A New Journey Begins: Battling Disease

….. but ….

for two years, I have been fighting pancreas cancer that metastatic to the liver and lung, and this…… is my new journey.

Why write about this disease?

I am a reserved person; I never thought I would have to talk about myself, but talking about myself with this cancer deserves a story.

Could you tell me why?

To better live or relive the emotions of these two years, to mark the times, to remember my thoughts and those of my loved ones, to live and maybe to help others.

A travel diary

Emma and I have always planned our trips down to the minimum details (we are camper guys), not to follow them in detail but to have more space to manoeuvre during the trip. Still, we have always refused to write CA19-focused diaries; our travels are inside us. We have lived, argued about, shared, and remembered them together, but now it’s different with blood tests for Pancreatic disease.

We didn’t plan this trip, but this time, we wrote a diary. Why? It is challenging to have the same thoughts, share them, and be in symbiosis.

The First Signs: August 2018

In August 2018, I was in the mountains; I was a volunteer chef at the campsite of the oratory of my home town (I have always loved cooking for my family and friends, at home from an old garage, we created a large kitchen. And lest there be any misunderstanding about who should cook between us, my wife has painted on a wall… close kitchen…)

I didn’t feel very well; I had frequent belly pain, but not constantly.

In September, I start doing some Pancreatic tests, blood, ultrasound, and with c.a. markers. 19.9. ct scan, biopsy (our doctor friend was intuitive and timely, a hug, Anna) ‘At the nearest hospital, the treatments are gem + Abraxane or solferino. Meanwhile, the ca 19.9 markers have risen well over 7,000, and even the small pains have become very serious. I started taking morphine in fentanil patches 50, and apart from a few months when it was suspended, it is a constant in my medications now the dose has risen to 75.

The Diagnosis: October 17, 2018

Diagnosis: pancreas lesion with metastasis to the liver and lung not operable.

It’s October 17, 2018, and the first treatment begins; our hospital opts for the gem+abraxan therapy.

It is the beginning of a path every Thursday. Going to the Cancer hospital at fixed times gives us a timeline; we meet other CA19 Pancreatic test patients, and a new world opens before us—a world of pain but with many beautiful people who take our path. With some nurses, we immediately become empathetic; how nice as I write to remember the first steps and the people who welcomed us.

Facing Fear: The First Day of Therapy

On that first day of therapy, we were terrified. That day, I remember Arianna’s words of support. She told us, “Medicine has made great steps; have faith.” But I remember Teresa, Anny, and Carl. The beautiful Barbara arrived a few months later; they are all my nurse angels. Outside my room, the background chatter of patients and carers was soft and reassuring. They were talking, smiling, and joking.

Our oncologist is Dr. Io. I still remember when the practitioner presented it to us; to our eyes, lost in our drama, it appeared as a safe harbour. A deep bond has been born between us. (We are sorry, Io, for having you so deeply involved.)

Navigating Information: The Importance of Research

During the first phase, Pancreatic doctors explained the seriousness of the blood-related disease without giving a CA19 home kit test deadline, but the web provided information. We didn’t rely solely on the San Raffaele consultation; we also consulted Humanitas, Rossi, and Saint Matthews.

We read medical treatises on immunotherapies and genetic mutations, but everything confirmed the initial diagnosis.

The gem + Abraxane treatment was administered weekly, starting October 18, 2018, and ending in June 2019 (30 administrations).

The CA19 markers slowly dropped to zero. Still, they then started to rise again to get to 700. The effects of the chemo have been less impactive than I thought, after which treatments I can put in order the medications I need to take to prevent vomiting. After the fifth treatment, I lose hair and all my body hair, universal alopecia. I found it interesting (this is what my wife said) and not having the annoyance of shaving daily.

Dealing with Side Effects: Neuropathy and More

A CA129 problem of little importance that still hurts me is chemo neuropathy in the feet and hands, or very painful spasms and cramps, lack of sensitivity, but sometimes the pain is intense. I go to another specialist who prescribes large dosages of genitalia and others. After a few months, the pain does not decrease, and I stop taking the medications.

It is June 2019, and markers go back to 700, always on the indication of San Raffaele. The administration of Solferino proceeded,

The solferino treatment for cancer began on 12 August 2019 and continues until 13 January 2020. Administration in the hospital on monday and Tuesday; also, on monday, they hooked me to a pump, which I came back to remove on Wednesday morning.

Pancreatic Clarification: my veins can no longer take chemotherapy or blood treatments and tests, and in July, I have a port (a venous catheter) guaranteed a small day host CA19 surgery. I’m not sick, I tolerate chemo well, and my hair and hair grow apart neuropathy problems; I feel reborn.