There are two types of pains, one that hurts you and the other that changes you. – Anonymous

She received the call on 11 Mar 2019 and broke down in tears. After crying for over an hour, Mom pulled herself together and rang me. I was also shocked but was positive that this disease can be treated.

Tumor had started growing after being of same size for 5 years. Doctor suggested my Dad to get admitted on same day. But a few days later they gave him leave for 10 days as bed availability was less.

After getting admitted on 27 Mar 2019 again, he was shifted to nuerosurgery ward and doctor said surgery has to be done within 8-10 days. After daily enquiry by my mother, on 1 Apr 2019 doctor said surgery will be done next day.

I planned with my brother earlier when date wasn’t given to reach before surgery. But on knowing surgery date, we booked flight of same night and reached hospital directly.

First time he had seizures in 2008. It was around 0245 hrs. Everyone was asleep. So no one recognised what it was actually that happened. By the time I woke up, he was calm, eyes open but body wasn’t moving. After a few minutes he was normal.

Later, on getting the MRI scan, doctor confirmed it was tumor. Dad denied for surgery when doctor suggested for it. Doctor also said, that surgery has to be done, it’s only about time when it will be done.

Every 6 months MRI scan was done to see if the tumor size changes. In MRI scan of Nov 2013, tumor size was found to be increased. He underwent 7 hours long brain surgery (craniotomy) on 5 Dec 2013. Biopsy confirmed it was Grade II. Radiotherapy was given in Mar 2014.

I wasn’t aware that this disease can’t be cured. But it can be treated and then medication for lifetime till it again occurs or starts to grow. In that case, again similar treatment would be required i.e. surgery, radiotherapy and chemotherapy.

We reached hospital on 02 Apr 2019 only to find out that surgery was postponed due to an emergency case. A new date wasn’t finalized yet. And it was again the same routine of asking date for surgery daily.

In the meantime, Dr told Dad that part of skull may have to be cut out if it’s infected. Now this was the bigger issue on Dad’s mind because this would change the structure of forehead. And he kept saying to us to pray this doesn’t happen.

The hospital was 28 kms from home, so daily up-down was a big task going at least halfway through the city traffic. We were living in Air Force quarters. It was on outskirts of the city, so cab booking was very difficult.

On weekdays, excluding public holidays, we would get air force bus to hospital but that would return in afternoon. We used to stay till evening, so would book cab on return which wasn’t easy as internet wouldn’t work properly in that area.

After waiting for few days, 10 April 2020 was given the date for surgery. All the tests have been done on the day before. He was told he can only eat/drink till 10 PM of the night.

We were told he would be sent to the operation theatre by 0700 hrs. The service bus wouldn’t reach before 0900 hrs. We didn’t had our four wheeler here in Lucknow.

So we rented a self driving car previous day and reached by 0630 hrs. It was going to be long and tought day. Papa was ready to go to the operation theatre.

After he went inside, it was just a long wait. Brain surgery is one of the most critical surgery of all. Even a small mistake would have big consequences. The area of brain being operated was left frontal temporal lobe.

This area majorly includes, not limited to, functions like speech comprehension and memory. Operating this area would affect the personality a lot.

The clock was ticking very slowly. Time wasn’t passing at all. After very long wait of 5 hours he was shifted to ICU. Attendant called us when he gained consciousness and told us we can meet him one by one.

A thick pipe was connected to his head with a small bag in which blood was getting collected. A lot of cotton and bandages were wrapped on head. Hands and legs were tied until gaining proper consciousness. And many wires were connected to his body to monitor vitals.

After Mom came out of ICU, I went in to see Dad. He was talking normally though looking a little weak. Doctor told he shouldn’t move his head for at least 2 days. “NO BONE” was written of left side of his head.

Mom didn’t notice, I didn’t know this. Told her and she didn’t believe and went in again to see. She was just silent when she came out.

He was kept in ICU for 2 days where we can only meet him for an hour in whole day, that too one at a time. Then he was shifted to Surgical ward where we can sit with him for a little longer.

Doctor had insisted on someone staying with him to accompany him to washroom and for having meals. So from next day, I was staying with him in night and in day time I would go get some rest at nearby living relative’s place. At that time my Mom and brother would stay with him.

The first night he started having pain around 2 AM until few minutes past taking medicine. From the look of his face it seemed the pain was quite unbearable. Similar pain happened next day and in night again.

In 2 days, he was shifted to nuerosurgery ward. I went home in daytime as I didn’t bring any extra clothes. And then decided to go early morning to hospital and come back home late night on my two wheeler.

It was Mahavir Jayanti, a holiday on 17 Apr’19. So Air Force bus wasn’t going to hospital. I reached hospital alone early morning. Brother already went back to Kolhapur to join his bank. Mom wasn’t coming to hospital as bus won’t go.

He started having pain around 10AM. At the same time doctor came on round, I informed him about the headaches of past few days. He asked to get an urgent CT scan done. But as it was a holiday, he asked to first check at CT scan centre if it can be done at all today.

I went to check if centre is open and scan can be done. They confirmed if doctor would write urgent on the form then they would do it. Went back to get the form from doctor, then back to centre to submit it, then back to take my father to the centre.

As he was still weak and centre was quite far from ward, MNS asked to take him on stretcher. But my father got angry on this. And finally settled on going in a wheelchair. I took him there, had the scan done and came back. Report was to be given directly to doctor in a few minutes.

Doctor called me to his office. Told me, my father had bleeding inside head and shouldn’t move even a little for next 24 hours. He asked me to be with him for that much time. Before I could say anything, Doc said, “don’t worry, we will take care of him, shift him to ICU”.

Then I took his belongings from nuerosurgery ward and shifted him to ICU. Next meeting slot was in evening, so waited outside ICU to meet him before leaving for home.

He was shifted to surgical ward again next day. Then after 1 day again shifted to nuerosurgery ward. The whole time my father would ask Doc when is he going to get discharged, whenever he came on round. And Doc would just reply, let the biopsy report come, soon after that you would be discharged.

Biopsy report usually takes 10-12 days. The surgery was done on 10 April. So the report should come around 20 April. My all leaves were exhausted. So I planned to head back on 21 April, as everything looked normal here.

Glioblastoma multiforme (WHO Grade IV) was confirmed in the biopsy report which was given on 22 April. I was already in Pune. Hearing the report, I thought the surgery has been done, only medicines is the next treatment, that’s already going on. But that wasn’t it.

Soon after I left, next day my sister, with an attendant, took Dad in wheelchair to washroom and then attendant left. He fell in washroom and couldn’t shout or get himself up, he was so weak. After sometime my sister suspected something is wrong and called the attendant only to find out Dad has fallen.

I wasn’t told about the biopsy report or this incident until 3-4 days later as Mom didn’t want to bother me right next day when I went back. Dad was shifted to Oncology ward and then Doc said he has to be given radiotherapy. As he already underwent RT once, he can’t be given the same from older technology machine that was present in the hospital.

It was suggested that RT will be given from another hospital that has to be found out keeping in mind the waiting time. For this someone had to go hospital to hospital to find out the waiting time. I booked flight back to Lucknow for 1 May.

On reaching Lucknow I went to the first hospital in the list of 4 suggested by doctor. This was one of the biggest hospital in the state having almost all departments a hospital can have. It took quite some time to locate and reach the department.

After taking token, it took over an hour when my number came. I just needed a number on amount and time required for the radiotherapy and doctor said “we can’t say anything without the patient”.

It was almost closing time for doctor, so I cam back next day with my father. Doctor looked at the documents and told this is a complex case, I should come after 2 days when HOD will be present.

There was sometime still left before we had to head back to the ward where he was admitted. So went to second hospital in the list. After following same procedure as first, doctor said they won’t do the RT as it was already done and can’t be done again.

HOD of first hospital mentioned they can start the treatment in 20-25 days. That was too long wait for a Grade IV tumor patient. Our doctor and a few others mentioned the third hospital we were going to check has 3 months waiting for RT. So we skipped going to that.

First three were government hospitals. Fourth on the list was private. On visiting the hospital, doctor said they can start RT in 3 days but had a condition.

They wanted in written, from Director of a super speciality hospital for cancer located on outskirts of city, that this RT can be done and won’t do more harm than benefit. It took another day to get this in written.

Everything was set for the long RT procedure spread across a month and half. All this while, I had my office laptop with me which I was carrying for doing work from home. Leaving a few days, I worked almost all days in second half of day till late evening while searching and finalizing the hospital.

The first few days back were enough to figure out that strong internet connection was only working at a few specific areas. My father’s ward wasn’t one of them.

It was May month and the temperature outside went upto 44° C. There was AC inside ward but the internet wouldn’t work good enough. I would sit outside under shade but still it was difficult to tolerate that temperature for long.

After looking for areas near the ward, ICU waiting room was one such area where internet would work a little better than the ward. Unless I needed high speed to work I would sit in waiting room. But then sometimes there wasn’t any space in the waiting for me to work, so would head back outside in the high temperature under shade to work sweating all time.

Radiotherapy preparation required latest CT Scan and MRI to plan the whole treatment. After scans were done, Mon to Fri for 6 weeks we had to go to this hospital at 4PM to get the RT done.

When I was in Pune, Doctor explained to Mom about the disease and the life expectancy. Mom never told me this.

One of the days when we were looking for hospital for RT, Doc called me and my sister to his cabin. He then explained how the first RT in 2014 was done and how it has affected his brain, how the next RT can be done and what are the options.

He then went on to explain the same things which he told my Mom. The max life expectancy without treatment is 3 months. If proper treatment is given when disease is diagnosed, it’s about 1 year in more than 95% cases and less than 5% over an year.

Daily routine was fixed when RT was started. Start from home at 7:30AM and reach hospital by 9. Office work till 3 PM. Then call the transport section of hospital to provide vehicle for us to go for RT. They would only allow a patient outside hospital in their own vehicle unless discharged.

A medicine which would cost over a thousand times more than a usual headache tablet was being given everyday before RT with a few more tablets to suppress side effects (like vomiting) of the first capsule.

Then we would go to the other hospital for RT. Being a private hospital, it was quite comfortable waiting there. It never took more than 30 minutes to complete the RT including waiting time.

After coming back I would do my office work for like an hour or two. Then help my father with dinner and head back home.

Few minutes before another brain surgery, me and my mother were sitting beside him. His eyes were a little teary. He was asking to complete the paperwork quickly after him as if he is thinking there isn’t much time left with him.

RT was done timely. Chemotherapy was being done for a week, then 3 weeks gap was given before next session. MRI scan was done after half of the total sessions were completed. MRI scan showed blood clotting in head and growth of tumor size. Surgery was scheduled in first week of Nov 2019.

The surgery was successful. But Doctor said the MRI report doesn’t look good as the tumor has grown and another surgery maybe required later. Every next surgery is more critical and has a lesser chance of being successful.

Multiple surgeries, two times radiotherapy and over 6 months of chemotherapy affected his personality and behaviour a lot. Doctors mentioned all this would change him slightly. But it wasn’t just a slight change. He gets irritated very quickly. Forgets small things every now and then.

No one thinks about having limited time in life. But having seen many patients in his ward with same disease, same treatment given and had already left the world, mind is always occupied with his health concerns and how to lengthen the remaining life. And this changed me.