Devansh Rai (Squamous Cell Carcinoma): Accept what is, let go of what was, and have faith in what will be

Detection / Diagnosis:

Almost eight months back, my dad was unable to swallow the food properly. We then checked in with the doctor. After the endoscopy, it was found out that my father is having a tumor. When the biopsy was done, it was revealed that he was diagnosed with squamous cell carcinoma. He was not able to consume any solid food and was entirely on a liquid diet. 

Journey:

Cancer was a bit of shocking news, and he was not much of a hospital person either. So it was a big task for my father to go through a medical procedure. He was suggested to take food from the food pipe. While the treatment was going, I was with him the entire time. I used to spend time with him. I have been a caregiver for almost 4½ months. I had to meet various doctors to know about my father’s case and the possible chances. 

As my dad is a 65-year-old patient, he was recommended to go through radi0therapy and chemotherapy and not a surgical procedure. We were unaware of literally everything like chemotherapy or radiation and its side effects, etc. We had to consult a couple of doctors. We also did various researches. There was a continuous question of whether to go for a CT scan or a PET scan as scanning was a required test. We were exploring our options to find out the best one. There were many options with multiple outcomes. We went for a PET scan, and the scan revealed that the tumor was pushing his windpipe, which added complexity. After this discovery, it was suggested to us to reduce the tumor first. To reduce the tumor, we had to go through chemotherapy.

After 2 cycles of chemotherapy sessions, the doctors saw a miracle. They observed a massive reduction in the size of the tumor. This news kept us positive as well as motivated. After this, we did some weeks of radiation therapy. Along with radiation therapy, there comes a lot of side effects. As it was itself a complicated process to undergo, continuous coughing made my father very uncomfortable. It was quite a challenge for him. But the tumor reduction kept him going further.

Our whole family used to spend a lot of time with my father. We kept him engaged and distracted so that he doesn’t feel alone. Spending time with him made me feel good too. He had a lot of side effects from the chemo sessions. However, my father was very positive throughout the journey. His positive thoughts kept him going.

After radiation, he had pneumonia. This new detection had many risks for my father. I realized it could kill my father, and we cannot do anything about it. Cancer has still not gone completely. In the meantime, he also had a fistula. Because of the covid situation, we did not go to the hospital to get the immune therapy started, which can boost my father’s immunity. He faced a lot of difficulty with fistula while coughing.  

As a caregiver, my whole family and I spend time with him whenever we can. I believe that spending time with the patient can make a lot of difference for him and the family. My father made a habit of playing online chess every day. This helped him to get distracted and engaged. I believe if there weren’t a fistula, he would have been able to do all the things himself. I was constantly exploring how to make things more accessible for him and what can be done to make him stay comfortable.

Family Reaction:

Everyone in the family had difficulty digesting the news. We decided not to tell him at first but when we disclosed the news to him he took it very positively. He said it is what it is now. It was very courageous of him to handle the news in such a manner. From that time onwards, we were positive as well. The difficulty to digest the news was only for the first week. After that, we accepted and moved on to find out what can be done from here onwards. We shared cancer surviving stories so that everyone knows that there is still a possibility and cancer is not the end. My father took the news positively and decided to fight back. He always said he will be okay. 

Duration of the Treatment:

The overall journey lasted for a total of 23 weeks out of which six weeks of chemotherapy took place. The doctors wanted to do nine weeks of chemotherapy sessions, but they suggested going for radiation after seeing the results. Radiation took about 12 ½ weeks. 

Side Effects:

We noticed different side effects almost every day. There was the loss of hair, continuous hair fall, and weakness. We also noticed some rashes on the body. Muscular pain was also common because of no movement. We saw an increase in coughing due to the windpipe issue. Therefore, we had to use various types of steamers, and nebulizers to thin the mucus. His sleep routine was disturbed as he had trouble sleeping on a hospital bed. We inclined the bed to make him comfortable. The radiation caused various symptoms. The doctors suggested some creams to reduce the side effects of radiation. 

Lifestyle Changes:

With the diagnosis of cancer, good changes happened in my father’s lifestyle. He accepted what it is and moved on. He kept himself engaged in various activities. He started using technology to communicate with people. Also, he started playing online chess to keep himself distracted and entertained at the same time. We bought steamers, nebulizers via the online mode of shopping. We have also set up a mini-hospital at home for him so that there is no need for him to spend more time at hospitals. 

Affects due to Pandemic:

Pandemic brought drastic changes in everyone’s life. No one could freely travel from one place to another as we used to do in pre covid. Traveling was risky and limited. There was limited mobility. But this limitation would not be much of a problem with proper medications and the right advice from doctors. 

Complimentary Therapy:

We did not go for or considered any alternative treatments like Ayurveda or Herbal therapy. we always have to do the conventional medication only.

Parting Message:

I know cancer news might shake your world upside down. But, with positivity, support, and the right advice, anyone can move forward and fight this battle. The journey is itself very exhausting, and it has an impact on both patient as well as the caregiver’s life. There arises numerous questions, second thoughts regarding the treatment or the medication. But when you get support, love, medicine, and the correct advice the journey becomes a little easier. I feel spending time with patients also makes them feel comfortable and normal while going through the journey. Distracting them and engaging them in some sort of activities like online games can help them to pass their time rather than overthinking about what is going on or what will happen in the future. As a caregiver, I will advise all the caregivers to keep them engaged, keep giving the patients proper attention and time, and spread positivity. All these activities can help patients in many ways.

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