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“The  CEA Doctors’ prognosis was disappointing, but I wasn’t ready to accept it.”

“The tests were perfect”: about the first symptoms

It all started in October 2015, when I decided to take care of myself — go to the gym and lose weight. From that moment on, I started having the first “swallows-pains” in my stomach. I blamed it on my diet and decided to adjust my diet. It helped for a while, but gradually, the pains intensified, became cramping and lasted longer.

Then I went to the doctor at the clinic.

They did some preliminary examinations; the tests were perfect. But at the follow-up appointment with the therapist, they called an ambulance team for me, followed by hospitalisation due to another attack. The doctor’s conclusion in the emergency room was: “Muscle spasm, you do not need hospitalisation.” I decided to go to a private clinic, but the tests there were also good, the ultrasound did not see anything. As a result, I was diagnosed with “pancreatitis” (inflammation of the pancreas – author’s note); they gave me an injection of No-Spa and sent me home.

This whole story lasted until November.

During this time, I was hospitalised twice with suspected appendicitis, but in both cases, they did tests and immediately sent me home.

Gradually, I realised that all actions were difficult for me; for example, the road with the child to the kindergarten began to take me not ten minutes but forty. I lost 9 kilograms in 3 weeks. The Colon pains were getting worse; I was afraid to eat.

During this period, I worked for an insurance company, which also dealt with voluntary health insurance. I decided to tell my colleagues who consulted patients over the phone everything. Having learned about my symptoms, they convinced me to contact a surgeon urgently. I barely made it to the clinic and received a referral to the hospital with a suspected intestinal obstruction.

“I didn’t yet understand my diagnosis and the many incomprehensible letters and numbers in the discharge summary” about diagnosis and the first operation.

On November 23, 2015,

I was admitted to the hospital. They immediately did a CT scan showing that the small intestine was inside the large intestine. The reason for this was a large tumour in the transverse colon. They decided to eliminate the intussusception – straighten the intestine – endoscopically using a colonoscope.

When I came out of anaesthesia, a proctologist surgeon came to see me. He said that a second – extended – surgical intervention would be required. Three days later, part of my intestine was removed. Later, the surgeon told me that it was a malignant neoplasm.

I was released under observation by doctors at my place of residence. I was glad that the excruciating pain had passed, and I did not yet understand the diagnosis of “Transverse Colon Cancer” and many incomprehensible letters and numbers in the discharge papers.    

The oncologist at the clinic reviewed my documents and tests and said, “Go and live a normal, full life. The operation was done promptly. You do not need further treatment.” After that, I regularly underwent examinations: CT of the abdominal cavity,

CT of the lungs, and colonoscopy.

The operation went well, and I went back to work almost immediately. During the first two years, I sometimes had stomach pains, but the doctors assured me that this was normal and would gradually pass.

My experience prompted me to convince my mother to get examined; she was 58 at the time. She was diagnosed with colon polyps, benign ones. This helped to perform the operation in time, remove the polyps and possibly prevent their malignancy.

“I took the news about chemotherapy calmly”: about further treatment

In November 2019, I changed jobs — I moved from an insurance company to a large IT organisation. At the same time, I developed new symptoms: constant fatigue and periodic headaches. The annual medical examination that I underwent did not reveal any deviations.

I connected it all with starting a new job and being tired if I decided to get examined. An ultrasound of my abdominal cavity revealed a formation more than 10 cm in diameter in my liver, and I was immediately sent to our regional oncology centre.

The doctors’ opinions were divided: was it a new tumour or a metastasis? A biopsy could have resolved the dispute, but I refused it, as I did not want to go through invasive manipulations once again, and I would have had to do the operation anyway.

Fortunately, my turn for hospitalisation came in February.

I didn’t attach much importance to the diagnosis or the upcoming surgery. Compared to the pain I had in 2015, I felt great. Yes, I was tired, but I could live with it.

Then, the head of the department said that chemotherapy would follow the operation. I also took this news calmly—well, it will be, and it will be.

They removed two-thirds of my liver, and I went through this operation much easier than the previous one – I started walking earlier, and there was less pain.

Almost immediately, I began chemotherapy.

I tolerated the first cycle poorly – immediately after the IV, I had severe spasms throughout my body. Then, the doctors removed all the symptoms but decided to increase the dosage of the drugs that are part of the premedication (the introduction of drugs intended to improve the tolerability of chemotherapy – author’s note). But the second cycle went even worse. During one of the IVs, I had bronchospasm (narrowing of the bronchial lumen, which manifests as a feeling of lack of air and shortness of breath – author’s note) – I could neither inhale nor exhale.

When I came to my senses, they said that they would not conduct chemotherapy anymore due to unsatisfactory tolerance to one of the drugs. I asked another chemotherapist in our city for a second opinion. The doctor agreed with the decision of the oncology clinic doctors and said that there are currently no treatment regimens without this drug, and she cannot offer alternative drug treatment options in my situation.

I was released for observation.

It was hard for me; I didn’t understand how I would be treated and live on if I couldn’t withstand chemotherapy. Without “chemistry, ” I thought the disease would immediately begin to progress.

At that point, I started looking for an oncopsychologist, and it turned out to be difficult. Several times, I worked with specialists who were not competent enough, in my opinion.

One of them, right at the first session, without delving into my medical history, asked me directly whether I had warned the children that I would soon be gone. This was not a very competent CEA approach: such words shocked rather than supported me. I felt devastated, and reaching my senses took me a long time. But then I decided to talk to my son; he was 17 then. I told him about the diagnosis, about the reason for my poor health.

My son took the information steadfastly, only asking if he could help with anything.

After that unsuccessful experience, I turned to another psychologist, this time on recommendation. This time, I was very lucky. The psychologist helped me accept my condition, and I decided to return to normal life gradually: I went to work and started doing sports again—only in a lighter version.

“I was going to fight”: about the progression of the disease and new stages of treatment.

I lived a calm life for a year and a half, but in June 2021, I started having terrible headaches. They were so strong that I called an ambulance. I was hospitalised, but the neurologist in the emergency room did not find anything critical. I went to the local clinic, where the therapist prescribed me paracetamol.

About a week later, I developed weakness in my left arm and left leg.

I decided not to try my luck at the clinic any longer and went straight to a chemotherapist, who I consulted with about various regimens and was monitored. As soon as the doctor saw me, she immediately sent me for an MRI of the brain: a tumour the size of a chicken egg was found in the right parietal region.

The doctors’ prognosis was disappointing, but I wasn’t ready to put up with it – I was going to fight.

I was immediately given a referral for hospitalisation at the oncology centre. Two weeks later, the operation took place; it went without complications, and the tumour was completely removed. The council of doctors decided that radiation therapy was not necessary in my case, so three weeks later, I went to a chemotherapist.

They were able to put me on a regimen that did not include the drug that was causing me such severe side effects, which is why I had to stop my previous chemotherapy.

It was assumed there would be many cycles, so I was given a peripheral implantable central venous catheter. However, I was soon diagnosed with jugular vein thrombosis, prescribed “blood thinners”, and observation by a vascular surgeon.

Later, the catheter was replaced with a port system.

This was not the only complication. My hair fell out almost immediately, but I was not too worried. I had two operations for intestinal obstruction. One of the drugs in the chemotherapy caused skin ulcers, and for several months, I went to the clinic to see a surgeon to change the dressing. They started to reduce the dosage of the drugs to reduce the side effects.

In April 2022, after a viral infection, I had a CT scan of my lungs, which revealed a lesion in my lung. It was inoperable due to its location; it was not growing, but doctors suggested irradiating it anyway to prevent progression. In May, I underwent chest radiation therapy, and a month later, I had brain radiation.

In March 2023, I continued chemotherapy but stopped it in July due to ineffectiveness and further progression of the disease. Now, I am starting another line of drug treatment.

My disease is such that I undergo treatment permanently.

Every 14 days, I have a new course of chemotherapy, so the rhythm of life is divided into two weeks, but all this can be combined with family and hobbies. I started painting – my long-standing dream- and decided to fulfil it.

Over the years, I have come to understand that you can live with cancer and live well. My social circle has expanded greatly. I have old friends who support me on this path, who help me when I need it, and new ones who show me that there is so much new and interesting ahead.

Living is the most important thing! Don’t limit yourself excessively; consider your characteristics and continue doing what you love.

Rejoice, love, create, dream – this is true happiness, life!