Prayers.

Mr.Nayyar grew quieter day by day. He would get exhausted speaking for a little while only. He was silently bearing his pain. When a phone call would come,he would ask us to just tell them he is doing fine.He did not want to send any panic attacks. Many wanted to come and visit him. But he did not want anyone to witness him in such a state.

He ate scarcely. He sat outside for sometime. Then he would lie down on the mat with bolsters. He was never in a comfortable position. We arranged a back rest for him.It did not provide him much relief.He was quiet.. His bore grim expressions. He would sit outside in the garden with his eyes closed.We would give him hot oil massages. He was quietly bearing all the sufferings.

The nodules did not grow in number or size . They were not painful. He could not stand in the bathroom for long. He sat on a chair and shaved.  He took precautions not to cut  on the nodules but inevitably he would get a cut. We would dab some beta-dine on it. He bathed and dressed up himself. Somewhere he was relieved that the FNAC reports were negative. We had not disclosed to him the truth yet. We encouraged him to be happy. Rahul and Rohini would regularly skype with him. Rohini would encourage him to walk, eat and suggest him some physio. He liked talking to them.

One day he decided to go to office. He took a bath, shaved and shampooed. His body was mostly bones. To cover up he dressed himself in layers. His long mustache gave some volume to his face. He wore a warm cap and put on his black jacket.He was feeling happy. We were hopeful.It was Lohri that day.
     
We hope and prayed for a miracle. May god be kind and may the
flames of  Lohri engulf all our sorrows and miseries.  
                           

 

                              

The Cancer Returns.

My daughter . Reha cared for her papa just like a newborn baby.All the time she would say, Papa I love you. Papa, you will be just fine, we all love you a lot. She requested him,Papa please eat something.All by herself she would take her dad to the doctors. But nothing was helping.

When we pushed him to eat or drink, he would take to appease us but after 1 -2 hours he would vomit everything.The nights continued to be tough.From 11 pm to about 5 am , we would be up with him, giving him home remedies, steam inhalation etc. After a tiresome night he could sleep for few hours in the morning. Then the abdominal pain and back ache bothered him.

He started to get annoyed with me and Reha. We were always working on what to cook for him. At times he would taste it, but mostly, it was kept untouched. My elder son  and daughter would skype or call us everyday. They were yearning to come to Doon. We kept on refusing them. They were physically abroad but their hearts were to be with us. Rohini had got her tickets booked for January.
My daughter Reha and I hoped and prayed for  a better morning. Reha, served her father with great love and emotion. She was always by his side.

Things continued the same way. Within a week  in January ,we noticed cutaneous hard eruptions on Mr. Nayyar's forehead , randomly spread over the face, throat and nape of the neck. We showed the doctors locally in Dun. The doctor's suspected secondaries. Mr. Nayyar's  health was failing miserably.No relief in pain. Few medications were prescribed. A FNAC  was performed on the nodules.Reports  turned out to be negative. The doctors doubted the reports. They wanted to repeat it.

Somehow Mr. Nayyar was not keen. May be he wanted to remain in denial that the cancer has returned.The doctors did not force.Once he was outside, the doctors asked Reha to step in and made it clear if the cancer has returned, we won't be able to do much about it.

My brave girl, drank her tears and accompanied her papa home with a smile. Her dad was weak and in pain. As the driver rode, he crouched inside the car,settled his legs on Reha's lap and closed his eyes listening to Sai Bhajan.
                         

Dimming Rays.

Every morning we would wake up with the hope that papa ( I also called Mr. Nayyar, papa at times) would be better today. After a painful night of coughing he would get some sleep in the morning.Something peculiar about his coughing episode would be that it would pick at around 11 at night and continue till 5 am in the morning. Throughout the day, there wouldn't be any cough. There was no phlegm, only dry cough mostly. We were showing local doctors who suggested Chest Xrays. But nothing was clear about his chest.

Mr.Nayyar loved his children dearly. He was not only their father but a great friend. My daughters would pour their hearts to him . He loved his son and narrated stories when Rahul was born people came from far off to see the beautiful baby.He was completely involved in their childhood, growing years, sending them abroad  for their higher education.He was known by our children's friends as well. They looked upto him. He had a magnetic personality.

Now, he seemed to be emotionally detached  from all of us. He would listen to our conversation but did not participate much.We felt he is fed up of Reha and my constant egging to eat food. Our very sweet neighbor, offered to  give him company, cook something for a change for him. Even this did not work out for long.He took few sips of water when his throat got dried up. But he was always in discomfort.

Health deteriorated rapidly. His main intake was only juice in the morning. He  did not have enough strength to stand in the washroom. We gave him a chair, he would shave himself sitting on the chair.He showered and dressed up by himself.

Our day and night was with him. He did not sleep at night and we were aside him.

                                                     

                                                   In his thoughts....

Mr. Nayyar fights on.

Time passed by but Mr. Nayyar had no relief in his pain. His stomach would ache constantly and he would sit crouching on the chair. This led to postural problems and his back hurt as well. He could not lie down flat due to acid regurgitation . He had to fix a thick blanket , few pillows to support his back.He turned and tossed.  No position of lying down was comfortable.

His appetite had reduced markedly. He grew very bony. The recent reports were clear. We felt cancer was causing a psychological impact on him. My daughter , Reha and I were now with him. Reha would pamper her father and encourage him to eat. It was a very difficult task. Despite his reluctance, I continued to give him fresh fruit juice. He would finish it in hours. Mr. Nayyar felt very helpless and frustrated with his degrading health. We constantly encouraged him to eat. One day he got furious and said, 'I will die  of food and not without food.' We had started to get worried.

My daughter accompanied Mr Nayyar to the local oncologist. We were never in favour of giving pain killers to him. Only if the doctor allowed we would follow. The doctor prescribed few medicines and advised Mr. Nayyar to walk  and eat in small amounts.

Nothing seemed to help him. He consumed semi solid food . He bathed himself, got dressed , walked upto the bathroom himself. But he refused to stroll in the garden.We gave him massages, motivated him, but all in vain. He seemed to grow quiet. It was winters, and he would lie on the mat in the sun, almost the entire day.Reha and I were very distraught. We did not know how to comfort him. We were around him all the time. But we could do nothing to relieve him. We would think of ways of feeding him.His weight was falling .

He did not like to watch television now but music gave him some solace. My darling daughter Reha would sit with her papa till afternoon, trying to cheer him up.He barely spoke. He liked her around him.Our two dogs ,Reha and papa would be around by the time I returned from office in the afternoon.

Mr. Nayyar's chest looked congested.He had sleepless nights. The scans showed slight pleural effusion but not in a worrying stage. We would be up with him all night. I would give him steam, Reha ensured before sleeping that he had vaporub, honey, cloves etc around him.We just prayed to God to show mercy on Mr. Nayyar. He who never even though bad of anyone, overlooked faults and flaws in people and had a heart full of love and compassion had to bear such  misery.

                                              Always liked to dress up.

                                                     Driving to the hospital.

Staying Positive.

As Mr. Nayyar's food intake wasn't great, one thing I was very strict about was a glass of homemade juice from vegetables and fruits that I ensured Mr. Nayyar had daily.I would buy the
produce for the juice for each week and assigned a separate fridge for storing it.Mr. Nayyar would enjoy peeling and cutting the fruits and vegetables every morning for the juice.He enjoyed sitting in the garden and watering the plants.The dogs would sit by his side and he would pat them with love.Mr. Nayyar loved the sunshine.He could spend the whole day in the garden basking in the sun.My children celebrated all occasions as they arrived to keep a happy positive atmosphere around M. Nayyar.Birthdays came by, festivals came by and we hoped that next year about this same time Mr. Nayyar would be completely fine.

My elder son  and daughter had to join back at work.By mid July my elder daughter returned to Australia and now it was just me, my younger daughter and Mr. Nayyar. My children had shown great unity and team work during this crisis.They looked after each other as well and took turns to make sure no one was overworked.My daughter-in-law and son-in-law deserve appreciation for supporting Rahul and Rohini while they were away from them for long periods.Mr. Nayyar was grateful to God and very proud to see his family strength.

In November we went back for our review.Mr. Nayyar underwent PET scan, ultrasound and gastrography.The scans came our normal but the gastrography revealed that the food moved very slowly through the Gastrointestinal system.It took 6 hours for a meal to move down to the large intestines.So again Mr. Nayyar was advised to take small frequent meals to minimize feeling of fullness.Mr. Nayyar was relieved from the reports and very happy that day and enjoyed his lunch at a popular restaurant on our way back to our room.We returned to Dehradun but Mr. Nayyar wasn't thriving.He continued to loose a little weight each month.month. Rohini and her husband Rahul gave us a pleasant surprise by joining us in India during Diwali.We celebrated Diwali with lights and sweets.My daughter Reha decorated the whole house with flowers and rangoli.Mr. Nayyar set up
the Puja area and performed the Devi Pujan like each year but this year he was fragile.He did not have the same endurance so he had to sit on a chair and take breathers while reciting the prayer.He choked with tears in between.A man who had done and hoped for only good of others was today feeling punished.He often said 'Almighty, why are you annoyed with me?Help me'. Mr. Nayyar and I  drove to pay our regards to our daughter's in-laws as it was her first Diwali home since her marriage.We kept our traditions alive.

Mr. Nayyar now weighed 63 Kgs.It was worrying us badly but we didn't want any negativity in Mr. Nayyar's mind.Mr. Nayyar was getting fed up from our constant nagging about his food intake.He started avoiding the scheduled diet that included milk, porridge and eggs.He mainly stayed on a glass of juice.We were in constant touch with his doctors in Delhi over the phone and consulted the oncologist locally as well.He underwent many scans but they didn't suggest any recurrence.But Mr. Nayyar continued to complain about the stomach pain.

Delhi summers and Radiation.

My daughters did a lot of running around in the hospital to fetch medications from pharmacy, send the drugs for mixing,pay the bills,ensure medications and feeds were administered timely and maintain the documentations.Nurses were good and came to assistance any minute you called for them but the attendants had to keep a track on all minute details and advocate strongly for their loved ones as it was a very busy ward and every patient was critical.

Mr. Nayyar had 28 days of radiation.He would wear a customized cast on his trunk to prevent unwanted areas getting exposed to the radiations.As radiation burns the tissue at microscopic level, it does come with some risks.My daughters would accompany Mr. Nayyar daily for radiation.They would  always carry a packaged juice bottle with them and give it to Mr. Nayyar to drink soon after the radiation session.As we were into summers, it helped him keep cool and stay hydrated.After about 15 session of radiation,Mr. Nayyar noticed loss of appetite, feeling of fullness in stomach and also started loosing weight.His cast fitted him very loosely now so much so that the doctors considered recasting him.Thankfully, Mr.Nayyar successfully completed chemo and radio though his weight now dropped to 70 from 77Kgs.

6 months was a long time to be away from our home.We craved for Dehradun's fresh mild air, open spaces, for our two gorgeous dogs and for our garden.Finally the day came and we returned to our home.It was an emotional journey for us and our children.We had won this far.Mr. Nayyar was delighted to see Litches and Mangoes on our trees.He took a sigh of relief breathing the sweet air and lying in the comfort of his own bed.

After a week, we had to go back for our follow up.We were told all was well and if Mr. Nayyar continued to eat well orally, the Jejunostomy tube could be removed.Mr. Nayyar was excited to hear this and chose to have it removed.It meant he would be freed of the hassle of daily dressing of the site, 2 hourly flushing and may be able to sleep better.

Doctors advised us for 3 monthly check ups from now on.We returned to Dehradun and started hoping to lead a near normal life again.But Mr. Nayyar was never comfortable.He always complained of stomach pain and constipation.He was prescribed pain relief and antacids to relieve stomach discomfort.Mr. Nayyar would struggle to find a comfortable posture to sleep in.As his stomach anatomy had changed and the GI sphincters that prevent regurgitation of food had been surgically removed, he constantly had regurgitation and more when lying down.This would cause microaspiration of his stomach contents into his lungs and therefor make him cough constantly.The only advise doctors could give was to have small frequent meals and keep the bed head raised.Even with these measures we could not get rid of the problem.Mr. Nayyar realized he had to live with it.

                                                       Happiness returns to Dehradun

Chemo Care.

Just penning a thought as it comes to me,there is nothing unique about death.Death comes to all who are born,when the time comes.Dying with dignity and with natural aging is the perfect death.

Feeding bag

Best home care and hospital care throughout the treatment was provided to Mr. Nayyar. During healing process of sutures we maintained his hygiene and hydration by moisturizing Mr. Nayyar's hands, feet, face and hair.We gave him gentle physiotherapy to make him feel active and feel good about his body image.In the evening taking him to the park encouraged him to walk.Mr. Nayyar did not like wearing the face mask out in the park to avoid attracting unnecessary attention.We would make him feel okay about it as the mask was essential to prevent airborne infections. For his tube feeding, we prepared him fresh vegetable and lentil soups under great hygiene.His tube feeding bottle had to be cleaned after every use with warm water.Mr. Nayyar would need to lie down for feeds and as this was every 2 hours, it got a bit exhausting and mundane but he complied with us.We ensured we had his ironed clothes ready for him daily as Mr. Nayyar was very particular about dressing well and we wanted him to feel in control of his life as much as possible.

21 days after, the surgeon checked Mr. Nayyar's sutures.They were healed and secure.He was referred to the Medical oncologist.Team of doctors decided on the course of chemo and radiotherapy.The standard protocol was 6 cycles of chemo with radiation overlapping the last 3 cycles of chemo.Later on we learnt that Mr. Nayyar was given what is called cytosensitive (v.s. cytotoxic) chemo to sensitize the cancer cells that were then targeted with radiation.

We gathered a lot of information from doctors, other patients and medical literature on patient care during chemo to be well equipped to look after Mr. Nayyar. During chemo,our oncologist advised us strictly not to give Mr. Nayyar any raw fruits or vegetables as these can be source of infection.We were advised to give him packed juices rather than fresh ones.A lot of emphasis was put on taking coconut water as it helps in improving platelet count.Hydration was very essential to allow for toxins to wash away from the system.The oncologist had warned Mr. Nayyar and us about the importance of nutrition during chemo as significant drop in Hemoglobin and platelets would mean discontinuation of treatment until the levels were up again.The guide was Hemoglobin not less then 10 and platelets not less than 80,000.The drawback of current chemo drugs is they cannot differentiate between normal and abnormal cells.They kill both and therefore patients have to try very hard to renew their health in between chemo cycles to get ready for the next attack on the system.These drugs cost a fortune.In a private hospital chemo and radio package touches many lakhs.

Way to Hospital for review after first Chemo cycle

The major side effects of chemo and radio are nausea and vomiting, suppression of appetite, hypersensitivity to smell and weakness/nubness in limbs.Mr. Nayyar experienced all the above side effects.The most worrying one was the nausea and sensitivity to smell of food and medicines as this affected his food intake.Even the sight of food would stimulate his nausea.At times we had to push him to gulp the soft diet to avoid the lingering smell.My daughter Rohini who was his main attendant during hospitalization, would eat her meals outside in the waiting area and quickly return to him after.She would try acupressure points on him to help with nausea, distract him with divine music, run him through his exercises with therabands and whatever it took to relieve him of the symptoms.Around this was the time when I too had commenced my chemo cycles.My other daughter Reha was my attendant.The whole ward and the staff involved in our care was in awe.It was a rare sight where both the husband and wife were undergoing treatment for cancer at the same time.Doctors would easily get confused during ward rounds.They wondered how the same daughter could be in one room with her dad one minute and then with me in my room the other minute till they realized that they were two.Every one was empathetic and extra nice to us.My chemo lasted 3 days where as Mr. Nayyar's was a week long.I would visit him in his room when disconnected from the IV drug lines.Wherever we were all together,it felt like being home away from home.