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