Saturday 24 May 2014

He smiles through the flowers!


 On the 25th Feb,he left me behind ,three beautiful children and a gorgeous house. I had planted seeds of various flowers ,,so that when my husband would sit in the garden, he could enjoy the beauty of the nature.I believe his soul has manifested it self in the colors of the beautiful flowers. He is smiling through the flowers.

He loved the greenery and serenity of Dehradun. We spent 35 years of togetherness in Dun.



At last.

My son in law and daughter in law arrived.They all loved my husband like a friend, a father. My husband's brother ,his daughter from Australia and his sister and brother from America also reached India.It was a tough moment for them to see him in this state.

My daughter,Rohini had taken complete charge of her papa's care. She looked after him like a newborn child.She nursed him through out.She encouraged him to cough out his sputum to clear his chest, gave him physiotherapy,massaged him and did not leave him for a second.

The doctors suggested home care treatment.We were advised that a jejunostomy might enable food to be given via tube through the stomach.This way,the iv feeding could stop and he could be ambulatory.The operation took  a few hours. It was successful.

During family counselling, the doctors revealed that when they opened up his stomach,multiple tumors were found in the intestine and they drained a substantial amount of ascitic fluid as well.They only wished that the iv fluid could discontinue gradually and he could gain strength through the jejunostomy tube. We were keeping our fingers crossed and hoped that we could give him the herbal medications now via the tube.

When Mr. Nayyar came to the ward, friends and relatives met him.We all talked normally .He did not speak but was happy to see everyone.His silence and resilience was profound.He allowed anything to be done on his body, it was difficult to find a vein for blood sample but he never complained,he broke into a warm smile, when he saw the doctors,he was bearing everything with  dignity.Sometimes,he asked for a pen and paper to write.

He wrote a beautiful wedding anniversary wish for our son and daughter-in-law. His handwriting was clear and legible.He did not watch the television. We.We wheeled him around the corridors with the oxygen cylinder but his blood pressure began to drop..He could see the sunset and the greenery.He was mentally alert and could recognize everyone.When we had visitors, he beckoned to us to serve them tea and biscuits.When his brother had to leave for the US,he asked us to call home and inquire.He wanted to send a gift for his nephew.

The next morning, his eyes rolled up and he almost collapsed. The ICU team rushed in and managed to get him back. The doctors gathered us in their cabin.My daughters and I refrained from the discussion.They explained the condition and the fatal end. Reha and Rohini held their father's hands.By 8 pm he asked everybody to leave.
At 11:35 pm on the   25th of  Feburary , he breathed his last.All of us were around him.His physical suffering had finally ended.He was one with God.

Thursday 22 May 2014

Still a wish.

The doctors explained my husband the  situation. He underwent CT scan, Ultrasound and every other test. It was difficult to complete the tests.He could not lie on his back and had constant vomits. The endoscopy was not successful either. The biopsy and FNAC reports confirmed metastasis.

He was depressed to learn about it.He understood the implications of metastasis of the cancer.His vitals were normal with the iv fluids.The doctors concluded that nothing could be done to combat the cancer , since he had severe weight loss . Only supportive treatment could secure him for some time. They clearly told us, he has 'short' life, do not attempt any thing else now on him like surgery, chemo or radiation.After 15 days of struggle, we decided to go back to Dun , with a hope that he may start oral intake and iv will discontinue.

We boarded the night train. My husband co operated through out.He controlled his cough all through the night so that fellow passengers don't get disturbed.My cute and courageous younger daughter, Reha, had her birthday ,the next day.I always like to celebrate my kids birthday.I called up a panditjee, while we were still in the train. It was a surprise to my husband and daughter. A havan  to invoke gods blessings on all of us.
                           
                                 
                     
                                 


 We reached home and made Mr. Nayyar comfortable on his bed.Panditji, performed a beautiful havan.He blessed Reha and all of us. We all sat by Mr. Nayyar and Reha cut her b'day cake.The daughters are always papa's angels. At night, Rahul treated his sisters with a lovely dinner.They did not want to go, their heart was at home with papa. I pushed them, a change was must for all three of them.
                                             
The next day, I arranged for Panchkarma ayurvedic massage therapy for my husband. At home, we had a doctor and nurse who put him on iv  fluids.But, he was not comfortable.For the first time, he started to get breathless.He did not have the strength to even sit down.He asked us to hospitalize him at the nearest hospital.

Recently, the Max  Hospital was  established in Dehradun. I used to visit there for the flushing of my port, Their cancer centre is new and budding. The onco surgeon and medical oncologist are two brilliant people. Mr. Nayyar used to accompany me during port flushing. He had developed a wonderful rapport with the doctors..So, we hospitalised him at Max.They immediately commenced the supportive treatment.

My husband's feet had swollen and his urine was dark colored and frothy. The doctors ran few blood tests. His creatinine, urea had shot up. The liver functions test indicated Jaundice. The doctors very wisely decided against any CT scans,MRIs etc as the exposure may adversely effect the kidneys.The hemoglobin dropped below the normal level. The urologist denied dialysis as the urine output was considerable. Nothing much could be done at this stage.An oxygen mask  maintained his saturation level.

The next night, he grew uncomfortable and started to breathe heavily.He tried to take control . He was conscious. The doctors did an ECG and the heart did not look good.He was wheeled to the ICU.

The next afternoon, the doctors called us to explain the situation. He said the malignancy has spread everywhere. The body was giving up.He suggested we take him back to the ward and just stay around him.We understood what he meant. We informed our relatives.

Tuesday 20 May 2014

Strength in togetherness.

A week passed away but the pain did not subside. Rohini and Rahul  were worried. Miles apart they still made sure that we are doing fine.I feel truly blessed to have children like Rahul , Rohini and Reha. Rahul and Rohini left their jobs for months and came to India to look after us. I also appreciate their work place ,  bosses and fellow colleagues for being considerate towards them. It was equally difficult for my children. Life had turned upside down.Meanwhile Rohini got her tickets booked

In a few days, Mr. Nayyar and Reha went to  see the oncologist again for biopsy of the nodules. . He was in pain . The doctor canceled the biopsy and prescribed few painkillers. With Mr. Nayyar waiting outside,  he told Reha that he is certain that the cancer has returned . While she debated with him for another round of chemotherapy or radiation,  the doctor was of the opinion that it would be futile. She was heartbroken when the doctor said just take him home and inform your relatives.

Mr. Nayyar as too weak to travel.We had to do something about it. He said to me , 'ask Rahul to come now.' I could sense things getting worse. He grew quieter. He continued to vomit. His monthly review at Rajiv Gandhi Hospital was in about two weeks. I had heard of a 107 years old man in Alwar who cured cancer with herbal treatment. It was one last chance we had. One morning , I told him, we are going to Delhi. We booked the tickets and with great care took Mr. Nayyar to Delhi. By that time, my elder daughter arrived in Delhi.

Mr. Nayyar's agony was silent. The doctors admitted him in the emergency room straightaway.He was dehydrated. His oral intake was nil. He was put on strong painkiller, a Fentanyl patch was given to relieve the pain.My review was due as well.Thankfully, they all came normal...

The 15 days we stayed in the hospital, we all were together. My son joined as well. Mr. Nayyar  began to vomit out undigested good. He thrived on saline , iv nutrients and painkillers. Nights were uncomfortable.He questioned his daughters , 'what position can I sleep in.?' Rohini would stay with him at nights in the hospital.She did not sleep for a second.She continuously monitored her dad and comforted him. The doctors ran various tests on him.A biopsy and FNAC of the nodules were reported.While the results were awaited, the doctors shared their doubts with us. They said, time is less.
                   

Tuesday 29 April 2014

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.  
                           
 
                              

Monday 28 April 2014

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.
                         

Friday 18 April 2014

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....

Thursday 17 April 2014

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.

Saturday 12 April 2014

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.


























Monday 7 April 2014

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

Sunday 6 April 2014

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.

Monday 31 March 2014

The weakest Link


I appeal to people reading my blog, that if you come across such a situation in your family, to please come forward to offer moral support and help in essential requirements of the patient.These are really testing times and though you cannot lessen the physical suffering of the patient but with your kind gestures you can give them great mental strength that is required to fight such a serious disease.Staying at Mr. Nayyar's parental house where his brother and bhabhi live, we felt guaranteed that we were going to receive love and support from them in order to look after Mr. Nayyar as advised by doctors.Mr. Nayyar is the youngest of all brothers and he dearly loved all his brothers,bhabhis' and their children.He may have not expressed it in words so much but in actions he did.He was so warm in his welcoming when the brothers and families would come to Doon for vacations.He loved serving, he loved being a host, he loved it when he could make his family happy and comfortable.He was a foodie but he received more joy in serving good food with his own hands to family and guests.He would give fantastic head massages to one and all.Our children learnt the same from us that guests were  like God and they enjoyed the happy atmosphere of home.

But, unfortunately and to our shock, things spanned out to be very different at Mr. Nayyar's parental house.It was quite obvious that his own people drew away from taking responsibility of Mr. Nayyar's and our care.My children and I were under the carer's stress and this was a time when we all could have done with some tender, love and care as this meant we could do our best for My. Nayyar as well.But at such a point in life, the family members at the Delhi house failed to look after our basic nutritional requirements let alone meeting the nourishment needs of a sick patient who was advised constant small meals like soups,fruits and protein rich foods.I want to here appreciate my children who quietly continued to do their best for dad and completed every task like showering him, dressing him,preparing his meals,feeding him,assisting and encouraging him for exercises without letting him know what was going on around them.I taught my children not to be a burden on anyone and so they hand washed their own clothes,cleaned their utensils after meals and so on.But Mr. Nayyar sensed the cold attitude of the family and felt very sad with the behavior of his own people.We and Mr. Nayyar spent a lot of time outside in the adjacent park to refresh our minds and debrief.There were some instances, that hurt Mr.Nayyar deep inside and scarred him till the end more so because it came from his own blood and that too in sickness.These instances may not be appropriate to disclose here but I have mentioned this phase of his journey too as this is reality like everything else that happened to him during his fight with cancer.And today you may not think that people you love are capable of failing you but if they do, be prepared and don't let it make you give up.

Mr. Nayyar took a difficult decision to shift from his parental house to one of his cousin's house for the sake of his and our psychological health as any stress in such sickness can be the tipping point.But Mr. Nayyar was a great soul, he told his family and friends asking explanation for the move, that it was due to the proximity to the hospital.The reason I mention such sensitive details in my honest blog is not to gain sympathy or to expose others but only for my readers to understand that good deeds in life begin at home.You don't have to be religious and pray in temples,your deeds will speak for you.Money is not everything, know the power that lies in moral support and care.






Saturday 29 March 2014

Baby steps to recovery.


My daughters arrived within a few days of each other.All my three children were here now and hospital was our home.All our energies were drawn towards finding out every detail of Mr. Nayyar's condition and the utmost best treatment options that we could avail.Total oesophagectomy with proximal gastroectomy with paraesophageal lymph node microscopic examination revealed Signet cell adenocarcinoma,poorly differentiated with margins free of carcinoma.The carcinoma extended to distal oesophagus extending to GE junction and proximal stomach.This biopsy report would then decide his pattern of Chemo and Radiation.

After 6 days in ICU, Mr. Nayyar was shifted to private ward room.His drainage tubes and urinary catheter were removed.We were so relieved that Mr. Nayyar was freed of attachments and that we no more needed to hang around in waiting room to get a a glimpse of him. In the ward room, we could be next to him and closely care for him.The daily routine was very hectic still, doctors did their rounds and the nurses were constantly carrying out the medical interventions.They taught us how to handle the tube feeding.The highest need of the time was to maintain hygiene and we were on to it.We limited any visitors, even close relatives were requested to delay their visits.We ourselves took charge of keeping Mr. Nayyar's bedside environment and equipment bug free.We sanitized our hands, ensured nurses did it too and that Mr.Nayyar's tube feeding bag was kept as sterile as possible.This was very necessary to prevent any secondary infections.

Days passed by and we saw improvement as time passed.On 13th day, doctors cleared Mr. Nayyar for commencement of oral feeding.We saw this as a big leap in his post operative improvement.The dietitian visited Mr. Nayyar to start him on a soft diet.It was recommended that Mr. Nayyar be given small size meals every 2 hours which would consist of Porridge, juice, stewed fruits etc. The dietitian also planned a calorie chart with food suggestion for Mr. Nayyar and advised us how to prepare his food at home once he would be discharged from hospital.

Mr. Nayyar also started walking in the corridor with assistance after being sponged and dressed neatly in hospital gown.My children would give their dad foot and hand massages and lots of love and encouragement.This improved his psychological health.We were now feeling ready to take him home.Since we were from Dehradun, taking Mr. Nayyar back to Dehradun was not a feasible option as he needed to be under close medical supervison of his Surgeon, come in for review weekly and then commence Chemotherapy in 21 days time.So we decided to continue to stay in Delhi and as Mr. Nayyar's parents' house was in Delhi, this would work just fine for him to stay in his house during his recovery.



                                   Sharing smiles with Mr. Nayyar

Thursday 27 March 2014

Experience in the ICU

Me and my son were shown two jars in which Mr. Nayyar's excised oesophagus and part of stomach were stored.The contents of the jar were very big which instantly brought tears in my eyes.It was like a part of my body had been cut out.I felt his pain.Surgeons explained that the whole of oesophagus was excised and one third of the stomach was also cut to ensure that the surgical margins of the remaining pars were cancer free.Then the stomach was pulled up to the throat through the chest cavity and attached at the neck to reconstruct the food pipe.A Jejunostomy  tube was also surgically lodged in the stomach for feeding as the enteral feeding was contraindicated after his surgery.

6 days of stay in ICU was very tough for Mr. Nayyar as well as us. Attendants were not allowed in ICU except for an hour a day.My son and I would stay in the waiting room and we never left the place in these 6 days as any moment announcement could be made for a particular patient.We would be handed a list of medications daily and we would rush to the hospital pharmacy to fetch the medicines to avoid any delays.We had to carry a lot of money on us as for every test or medicine, payments had to be made first.

Prior to surgery
The scene inside ICU is very intense.The beeping monitors, acute looking patients with drips,drainages,ventillators and highly alert staff makes the ICU environment very nerve racking.Suddenly at 10 pm an announcement is made 'Mr. Nayyar wants to see his son.He knew Rahul was arriving that day and even in this condition of semi-consciousness he was concerned for his son.Mr. Nayyar was very protective of his children from the beginning.He would not allow his kids to walk to the shops alone or do any sleepovers with their friends.He would drive our daughters to their colleges and functions and be there half an hour earlier whenever he had to pick them up.The best part was that friends of our children would look forward to meeting their Nayyar uncle.They loved how warm and loving he was to them as well.

My son later confessed that sight of his father in ICU with tubes inserted everywhere was the most painful sight and it made him cry.Next morning, when we were allowed to see Mr. Nayyar for a short period he looked very depressed.That morning, the tea trolley had done the round in ICU and my husband had expected to have his cup of tea finally but was shocked when the nurse revealed to him that he was to be Nil-by-Mouth for a few days to allow the internal sutures to dry.He also had a look at himself and realized how major his surgery was.This had depressed him a lot.He did not want to see us, rather he did not want us to see him in such a helpless condition.The roles had reversed, he was used to being in control,the doer and the giver.

+

Monday 24 March 2014

My husband, my strength.

My husband's surgery was decided to take place on Friday.He got admitted a day before.I was the only one besides him at the time.My son Rahul was to arrive from Australia on Saturday.I did not let myself shatter mentally, instead prepared myself for it.Luckily, the doctors had to postpone his surgery by a day which meant that Rahul would be by my side when my husband would be wheeled to the operating theater.

My husband was a very handsome figure.He would dress up in his well ironed suit,polished shoes and his mustaches were long and curled up.He received compliments all his life from by-passers and strangers.He was a believer of 'quality not quantity' and this is what he taught his kids too.When I would accompany him to the hospital visits, the doctors and nurses would look at us and ask us where the patient was.They used to be stunned in disbelief when I pointed at him.My husband was very innocent, he never realized the extent and seriousness of his disease.He believed, the surgery would fix everything and life would be as normal as before.He had in in 59 years never needed any medical attention.

Morning of surgery arrived.At 7 we wheeled him to the OT.Docs said they may us robotic techniques as well.The estimated costs of admission and surgery was given to me.It was certainly a big amount and if one does not have savings and financial stability then that would add further strains in these tough times.I wish to advise people to save for adversity as you never know when the tables turn.

At 2PM some people started pouring in but my eyes were only searching for my son.I felt for him as I thought of the stress he may be going through in his travel.As he walked in, I hugged him and cried and said to him ' look at your papa's name on the TV scroll, it says Surgery under way'. We silently kept sitting and praying for my husband's successful surgery.At 6:30pm, we finally  heard from the surgeon saying the surgery was successful and that we could get a glimpse of Mr. Nayyar, as he would be wheeled to the ICU.And we did, I said congratulations.

Friday 21 March 2014

My husband- 22/10/1952- 25/02/2014

On 31st December,2012,I was having breakfast with my husband in my sunny beautiful lawn,I noticed he rubbed his chest , gulped coffee and again started to eat. I asked him since when he was having this problem, he answered casually,it occurs often. I am a  Physiotherapist , by profession and  my husband, a businessman,  had very different  work timings.My early morning timings never allowed me to have breakfast with my husband.His lunch was always in the office. Due to my own health problems,I avoided dinner and never really noticed his eating pattern.

My husband was a tall,handsome and a well built man.He weighed 95 kgs. He would wear his favorite hat and go for early morning walks without fail. He was always well dressed,he had bought new clothes as he was losing weight.We all praised him for his stamina too walk and the fact he was getting into shape. Lest we knew,it was his cancer killing him slowly.


On 1st Jan,2013, I took appointment of the gastroenterologist  for my husband. He was so reluctant , he said ," you want to spoil my new year?". A endoscopy revealed a mass at the junction of the esophagus and the stomach.The biopsy doubted carcinoma. A series of investigations followed. I was all by myself in Dehradun. My three children were in Australia.I was not very internet savvy but used to skype with my youngest daughter daily who had recently gone abroad. I googled for the best of  cancer hospitals. Shortlisted Medanta,Delhi, Tata Memorial and Rajiv Gandhi Cancer Research. Then I skyped with the kids to break the news to them.It was very difficult.

Luckily, through my husband's cousin sister, we got a quick appointment at Rajiv Gandhi Cancer Hospital, Delhi.A very efficient team of doctors took over.The endoscopy was repeated. Within ten days,my husband underwent PET scan, Ultrasound, Blood tests, Chest Xrays etc. The reports showed Carcinoma at the junction of esophagus and stomach.. I immediately informed my children and they confirmed their tickets.

We never left hope.....we were ready.

                                            In Happier Times