Shefali (Oral Cancer): Caregivers Should Not Be Neglected

Detection/Diagnosis:

It was just an ulcer under his tongue, and never in our wildest dreams, we could not have imagined that it would one day become cancer. It was in December 2016 end when he had an ulcer, so he along with a family member consulted a family doctor who already detected it and suggested a biopsy, but my husband was so scared of this cancer word that he kept this hidden from all of us because he knew the moment I come to know about this I would have taken him and got his Biopsy done. A wrong emotional decision is taken where we lost time and delayed the treatment required.

He was a gutka addict, but when he found an ulcer, he stopped having it. In February 2017, we thought to have a regular dental check-up, so there the doctor said that it doesn't look good and suggested having a Biopsy. Biopsy crashed our world, and it came out to be a second stage Oral Cancer.

Treatment:

He immediately got operated, and the normal process of chemo and radio sessions started. Radiotherapy didn't work for him, and he ended up having an infection on his lower lip, which was herpes. But Doctors doubted that probably cancer must have spread to his lip, so we need to cut it out and have a Biopsy done.

For a man who had always been so handsome, who never had any scar on his face, who was so proud of his looks, it was hard for him to accept that he now has 30-32 stitches on his face. He was in trauma, but at the same time, he didn't have any choice rather to face the situation, and the good news was that the doctor said that it was not cancer, it was just an infection on his lip. So he was discharged the next day.

I was so much surprised how a renowned doctor could have missed such an infection. I think it is because we, the patient, and the family, are not informed about everything. We are told that our immunity will be down during chemo, but they don't give us the complete information; they should focus on the nutrition part too and provide us with something to boost the immunity as well as things to counter its side effects so that we need not depend on Google to collect the information.

Daughter's marriage:

What worse it can be for a daughter that her father was diagnosed with cancer just ten months before her marriage? We were so scared that this marriage would happen or not, or he'd survive or not. This time was very traumatic as looking for my husband's health physically and mentally and looking after a daughter who was going into Depression was so hard to handle, but my profession of being a counsellor helped me to manage everything somehow. I used to go for a walk. I used to meet my friends. I needed my own time. I needed time to focus on things. There was some guilt in my heart that I was leaving him for a few hours. But it was necessary. I used to talk to other patients and their relatives. This was a way to gather information. I even needed to build upon my mental strength as these breaks helped me get back with clarity and knowledge.

Family Support:

It is said that the very first thing a patient and a caregiver look forward to is family support, but unfortunately, in my case, I never had that; in fact, there was a lot of family interference about having chemo or not, so there was a lot of mental irritation. I think there is a requirement for some psychiatric support, which should be given to patients as well as caregivers. Also, there should be a support group that can help you and support you at this time of distress. At that time, most of us would get confused about what to do. What is the right thing to do? What can be the best treatment against oral cancer? Here support groups can play an important role.

Second opinion:

After his lip surgery, doctors stopped his chemo and radio as his body wouldn't be able to take more of it. They told us to take him home and not to bring him to the hospital again as they didn't have any other treatment left for him. At this time, we were utterly lost don't know where to go, or what to do, we believed in doctors totally like God, but now they say they don't have any treatment left for him.

We thought to have a second opinion this time, so we consulted another doctor who said that the infection was now gone, and we could continue chemo, but Radiotherapy wouldn't be given as he would not be able to take it. So we started his Chemotherapy again, but there were a lot of things going through my mind what if the chemo backfired or what if there was an internal infection how would we be able to detect it? To make things worse, his cancer spread into his lungs. At that time, I remembered that, somewhere at the time of his lip infection, I heard about Immunotherapy.

So we spoke to the doctor, but he said that he doesn't suggest this to us, and it's entirely up to us if we want to start it or not, so I called an immuno-therapist, and she told us to start the Immunotherapy, we would have to stop chemotherapy. We were so confused about what to do and what to not, so we again consulted another doctor. She said the same thing and also warned us that if we don't continue chemotherapy, then his cancer might go into his lungs and spread, and once this happens, he won't be able to breathe, so we have to take the decision or be prepared for the consequences.

Finally, after thinking so much, we decided to first complete the chemotherapy to take out his cancer because that was our priority. So after six cycles of chemo, the cancer decreased and didn't spread to other parts. Then after another six cycles, it was utterly out of his lungs, so we started having faith that okay chemo was working.

Everything is back to normal:

In November, he was fine and started gaining weight again and somehow managed to attend his daughter's marriage. Doctors had put him on oral chemo at that time and told me to keep a check on his diet; he doesn't go out or catch an infection but the moment you think everything is now going smoothly, life throws more downfall of problems at you. There came such a situation that he had to go to the office regularly for 4-5 days, and because of all the dirt and dust there, he again developed an infection, and we again had to rush to the hospital.

Doctors said okay, his immunity got down, but let's hope his Cancer has not spread. He had his PET SCAN done which showed a rise in cancer, but the doctors said that chemo would not work for him anymore so I should take him home and take care of his diet and immunity but this was not enough, by that time there was a cancer swelling of a size of a table tennis ball under his chin and on the shoulder, I was said to expect the unexpected thing.

According to doctors, this was the end, and they prepared me to be ready for it, they said it would blast, and blood would ooze out from it like a fountain, it can be 1 hour or one month, so I have to get prepared to face the end.

The Fast End:

Going back home with this fear of losing him, I didn't know whom to consult, or who to talk to. I just didn't know anything, and suddenly this Immunotherapy thing struck me, I immediately rushed to an immuno-therapist, and we chalked out a plan. I kept this plan to myself. I told my husband that these are certain medications. I never told him the exact thing. Medicines of this therapy were mostly plant-based. Also, they were available 24*7 to counsel if something went wrong.

Simultaneously I was helped by a doctor who used to work voluntarily. He, along with his team, guided me. They told me about dressing the wound, how to feed him through the tube, and what diet should be given. This, along with immuno-therapy, helped my husband and me. Even after having so many family and financial crises, I managed to provide him with immunotherapy, and it did work. Within one month, the swelling subsided, and he was getting better. But after, sometimes he developed an infection again. There was a tube that was used for feeding around which, the infection grew. The doctor suggested hospitalizing him. He was also hallucinating during this time. The doctor also suggested that he require a change of place.

So we decided to get him admitted to Shanti Avedna, which is a hospice. It is among the best cancer hospitals. Shanti Avedna does not admit patients when there is no scope for recovery. They admit only those patients who have some chance of recovery from cancer. So when they said that my husband was eligible to get admission. I was elated that at least there were chances of survival. They asked us to admit him the next day after some tests were done. But he was not admitted because of my family's decision and not adhering to the doctor's advice.

His infection was spreading to other parts. The doctor warned us that anything could happen. In the next five days, his condition worsened. On the 5th day, blood was coming out of his urine. I didn't know what was happening. I was feeling clueless and helpless. There was no one sitting beside me; I felt alone.

His condition worsened over the next few days. He was not able to speak, so he used to write. He used to say sorry to me. He felt so bad and guilty. And one day, when I was just sitting beside him, blood came out of his mouth, and he passed away. This was the end, and it was so fast.

Parting Message:

I know one thing, he didn't die of cancer. Had there been no infection, he would have been a cancer survivor. The only thing I can say is that for cancer treatment, a counsellor is a must, who supports, listens, and who guides us all about the medication of cancer and also about the best Cancer Treatment. This is lacking in our present system. Even after being a counsellor, I always wished to have a counsellor with us on this journey to guide us through this, so I know how it feels to be lost, confused and alone fighting with this deadly disease and so here I am ready to help or counsel anyone who needs it.

Being positive when you always hear negative around you is not easy, but you don't have a choice either. You have to stay firm to pass every hurdle, and the most important thing on this journey is family support, so I request everyone to put their issues and ego aside and help and support their loved ones because they need this very badly.