July 8th 2008 :
Hi all ,
Why am I here? : I am here because quite honestly I was groping for answers and I literally “googled” my way into this site and read Ananth’s inspiring and all too familiar story. I think in some way I was also hoping for some kind of solace! I know most of you may not have the patience or time to read what I have written but I am being a little selfish. I am writing for myself more than anything. I am writing because I am hoping it will make me feel better and also hoping that I can share my story with people who read this.

Mum : As I write, next to me is the most brave,wonderful,spiritual and fantastic person..My mum. She is the center of our lives. She is the epitome of beauty,elegance,dignity and strength. She is really the reason for who I am.We are an extremely close knit family and life has always been about living for each other and through one another.Mum and me are like friends.We are very close and share a bond that is unique and beautiful.My sister and me have been more than fortunate to have had the most gracious and wonderful parents. Both mum and dad have been very active people socially and have always been the couple who comes to everyone’s rescue in many ways. Mum has the most amazing sense of humor and has always lived life to the fullest. Her happiness always comes from seeing others happy.Sometimes people would say she has it all..the good looks, a Phd in English Literature, a great cook, a fabulous homemaker, a devoted wife and mother..and I would think we have it all because we have her.
We have a large extended family and mum being the eldest has always been the center of everyone’s lives. No marriage,no family function is complete without her because she takes control and has a solution for everything. She makes everyone laugh and regales people with her fabulous stories.She is always looking out for others. She is everyone’s strength.

Providence : 10 years ago my aunt (Mum’s youngest sister) was diagnosed with leukaemia and miraculously mum was a 90% match as a donor. Without a blink of an eyelid ,she flew down to the US and gave her life..Mums stem cell was grafted into my aunt who today happily says, “your mum gave me 2 of the greatest things ..No hair on my body and allergy to chocolate so I can never put on weight!!! Ten years later destiny turned its tables. In 2004, what started off as a small ulcer n her mouth turned out to be a nightmare. From biopsies and scans and endless tests, My mother ..a person who did not have single bad habit.. had a malignant tumor..

The C word : C word as we used to call it then had struck our family!! Us !! How could it be ..Not us!!! Not her!!! It was a shock and very hard to deal with. Suddenly one day I was in the ICU looking at her after a 7-hour surgery with tubes everywhere and all I did was to look into her eyes. They smiled at me and I couldn’t help but run out and breakdown. A portion of her tongue had been operated upon and some nodes were removed. It had been a major surgery. Nothing quite prepares you for what you see. We were assured that the tumor had been done away with. The Doctors said she may have to stay in the hospital for 20 days and so each day we prayed with her, and on our own. And mum in all her dignity showed us all that she was a fighter and left the hospital to go home in just 8 days.
Will power surpassed Doctors predictions and she was home. Then came the radiation and with it came all its nasty side effect. The thickening of the saliva, the rawness of skin in the neck, the headaches, the shortness of breath..15 years of her yoga and hours of prayer and pranayam taught her resilience and tolerance for all of that. I never saw her complain or rue her fate. Not once.
2004 fast became 2007. Everyday we cherised the time we spent with her. She was our hero.Her diet had changed considerably to mashed food nd she had lost weight but Mum looked as pretty as ever and her sense of humor was as intact…Our monthly routine checks had stopped to now once in 6 months and the Doctors said she was officially clear. We were grateful each day for all the little and big things that came our way.

And we thought the worst was over …:
September 2007…One day she called me after her yoga class and said she felt a node in her neck that didn’t seem normal. The doctors had done a check a week ago and had said everything was clear so there was no need to panic.
A routine check to the hospital and the nightmare was back. More biopsies, countless tests,scans, opinions, decisions,consultations..and then you just do what the best Doctor in the country tells you to do.. October 2007 I found myself in the ICU again looking at her..Only this time I did not run , I did nor cry. I just stood there and stared at her..because I thought to myself ..this is not my mother, it just cannot be! How can life be so cruel and so unkind? A person who had rarely ever had a saridon or crocin.Led the most healthy life, had only helped others, had a clean and pure heart ..why her? Today I realize that there is no logic to any of this. The why her ..why me syndrome does no good to the situation..only makes it worse.
Her tongue had been cut further, her jaw bone removed and replaced with a forearm flap.Her face, her hand , her leg were all in a cast..there were tubes all over, there was a tube in her throat and the visual was horrific. 11 hours of surgery and all I could think of is how she waved at us before going in and said..“don’t worry ..go eat your lunch ..i will be fine”.
And in her true comical spirited style she shunned the ward boy who came in with a stretcher to take her into the OT and exclaimed , “I have two legs ..I can walk!”And confidently she walked in with a smile to face her fate with the grace we have known her for.
My sister and me wished that Dad didn’t have to see her in the ICU after the surgery. But we had no choice ..the two are inseperable and cant live without one another.. I will never forget how his face turned white when he saw her and in seconds before we knew it he had collapsed in front of her. That night our parents who had only showered us with love and adoration were both in the ICU.
Dad ..a man always in control..always the provider..someone who wakes up at 5 for his tennis and swim..A Ranji player, top of his class in Cambridge and University, the greatest orator and writer I have known, at the helm of things in his work….here he was ..rendered helpless and weak. And all he did was hold my sisters and my hand and say, “Girls .I am supposed to take care of both of you and here you are taking care of me but he said..The worst is over!” And I thought to myself..it has to be..what can be worse!!
I was wrong! The worst was yet to come.. Post surgery..mum and her will power defied all the Doctors ..she soon became a favourite on the floor with all the nurses and Doctors. Everytime we asked her if she was in pain she would say no. The tracheo was the hardest thing to see and come to terms with but soon we realized we had to come to terms with a lot more.

Keeping the faith :
Everyday we would wait for her to write her little anecdotes to us and soon we all developed a kind of sign language between ourselves. She was determined to recover and be back on her feet.Her sense of humor and her spirit got her through and she was out in a record two weeks.
It was hard to accept that a person who was inherently so beautiful, loved food, loved to tell tales and entertain people ..could no longer eat ,could no longer talk ..but she was home and we were so grateful. We stopped asking why and just accepted the situation. Everyday we told her how much we loved and admired her.Everyday the family was beside her. Her brother , her sisters , her mother and us. Calls and countless messages for her. Prayers and good wishes.
The Doctors said she must have a round of radiation in December of 2007 as it would be the safest thing to do. The tumor was completely removed in this so called commando style surgery. We were told that an intensive surgery had taken care of it. Opinions went back and forth and finally 33 sittings of radiation later, she was able to eat better and talk better.
January came and she was looking forward to her sisters sons wedding in Chennai. She loves Chennai because she grew up there, her mother lives there, Dads family lives there and off course that is also where she met Dad.

Life tests you :
Then suddenly one day she started getting the dreaded shooting pain in the ear and she couldn’t eat. The pain started to get unbearable and we could not see her suffer. The Doctors said she would be fine and that it had nothing to do with the tumor since recurrence was impossible so soon after surgery and radiation. It hadn’t even been a week since radiation. So we were asked to go to a pain-relieving clinic, which only made her pain worse.
He said it was nothing to worry about and asked us to do an MRI just to be sure.
That MRI was torture for mum. She was in there for 2 hours ..her saliva kept choking her as it was thick with the radiation.Dad and me kept praying. We told her she did not need to go through with it but she insisted.
The only two times I have seen my dads face turn white once in the Icu and the second time was when the surgeon looked at the MRI report and said the tumor is not all gone. He sank to his chair and said she does not have much time. He asked us to take her to the wedding and let her be a part of things.
It was one of the many nights I wont forget. What would we tell mum?
So we decided we wont say anything..she had been through enough.
We flew to Chennai.She attended the wedding and performed all the rituals as the eldest in the family. Everytime I looked at Dad there was a lump in my throat , a feeling in my stomach that just would not go away.

I believe in Angels :
We were helpless and did not know what to do. When things reach a dead end suddenly a road appears from nowhere ,I started believing in angels. And our angel came in the form of a Doctor at the Apollo hospital in Chennai. A family friend asked us to take her there for an opinion since she wanted to spend more time in Chennai and not go back to Mumbai.
Dr. T.Raja is one of the most humane Doctors that I have come across. He knows his stuff, he becomes the patients friend first, he is a busy man no doubt but he takes time to tell you the pros and cons and what to expect and what not to. That is what we appreciated in him. I believe Doctors are admirable but sometimes they try and play God , sometimes they tend to be a little insensitive to the patients and their loved ones. They are no one to put time frames and give doomsday prophecies. We all have our destiny and it shall play out in whatever way it is written for us.
To hope or not to hope?
We suddenly saw hope. Hope is an amazing emotion..it makes all the problems disappear in an instant.Monoclonal antibodies..cetuzimab,erbutrix..chemotherapy..these were hopeful words that we were going to deal with in the next 3 months. These were wonder drugs that would give mum hope..She was to be given these intravenously over 6 weeks. One cycle a week. If she responded well then she would get 12.Did mum want to do this? Did she give her consent? When someone tells you this is the only option..what do you do? You look at your family who lives each day for you and you just say yes. That is what mum did.She just said yes.
Her treatment was to start on a Friday in February and she was very thin with the lack of eating.It was such a struggle. Even the food which was in puree form would not go down. She was Down to 44 kgs. It was to be a 24 hour procedure every week. She would be admitted for 2 days.
Hope ..the word that we were clinging onto suddenly came crashing..On Wednesday, I ran into the bathroom on hearing mum screaming for me . She was covered in a pool of blood..chunks of blood were coming out of her mouth.They would not stop. Dad was in a daze as I asked him to call for an ambulance. Mum was a sea of calm.She started packing a bag for the hospital and even started cleaning the bathroom telling me that Dad would need to use it when he came back from the hospital. Very calmly she walked to the ambulance.
When you see an ambulance on a road you never imagine yourself to be in one. And there we were..that shrill sound and that ominous feeling. Dad was not even looking at Mum. My grandma ..the strongest and most dignified lady could not bear to see her daughter in that condition. And the blood would not stop. We rushed her to the ER and for 9 whole days mum was in the critical care unit.They did a procedure called Embolisation that stopped the bleeding. Because of radiation, a blood vessel, which had become very thin had ruptured.
Little did I know then that I would spend 110 days in a hospital room with my mum. But I could not imagine being anywhere else.The ryles tube was the most difficult thing for her to accept but as weeks went by she got used to it.My sister came and went every other week from the US. Thank god for her perks on Delta airlines! Dad adjusted his work schedule and would fly back n forth from Mumbai to Chennai so he could be there from Thursday to Sunday..I convinced him to get away and distract himself since I was there. My grandma was there like a rock. She would sit for hours on end holding mum’s hand.As usual mum became the favourite patient on the 4th floor at Apollo. Even in the critical care she would write things and make the nurses laugh. They adored her and came down to meet her ever so often. She was so concerned about them.What they ate, where they lived. She was always concerned about us and that amazed me about her. She always thought about others.The first 2 cycles went off well. Mum was in good hands..she was responding well.
The 6 weeks went by with a lot of ups and downs...but we were by her side.The medicines caused excessive shivers, stomach issues, tiredness, constipation , sometimes diarohhea. But she was cheerful and fought hard. Positivity filled that room..never did she give up or shed a tear. She would listen to her devotional songs every morning , say her prayers, ask me to read to her. My cousin came and read all her favourite poets from Keats to Byron and Tennessee and awakened her love for English literature. We talked about everything except the C word.She insisted on taking a bath on her own everyday, walking down the corridor everyday.Dr.Raja said she could handle 6 more cycles and soon 10 weeks went by and there were 2 more cycles to go. Just as we were coming to the end of it she developed a major skin allergy and her “ivory skin” as we would all call it was totally covered in rash. She developed edema and her hands and feet started swelling up. It was tough to see her like that. Somehow the last 2 weeks slowly inched on. It was a very trying time but she finished all the 12. An MRI was needed to assess the condition of the tumor but Mum could not go through with it.She really tried but the saliva kept coming out and she could not lie flat because of the stiffness caused from radiation. She is never one to give up..but that day she really tried and it did not happen. So an alternative method called the 64 slice scan was done because this was quicker and it was possible to take a suction machine into the room to suction out the saliva for a clear image.
The results showed that the tumor was not visible. Obviously the wonder drug had worked..that’s all we knew. Dr. Raja was very happy with her progress and in 2
weeks we were ready to go home. The ryles tube was removed because she said she would try eating orally. And she did. That day all of us had tears of joy! To see her drink
that soup was like a rebirth of sorts. And slowly she started to talk. We had not heard her voice in 5 months. It was music to all our ears.
Leaving the hospital was strange..The hospital had become a kind of home in an odd
sort of way but off course there is no place like home. And mums smile as she walked in
and saw her mother standing at the door of our home in Chennai said it all.

The homecoming :
May 2008
The homecoming was wonderful and Mum was relieved. Hope was a word again in the dictionary of our lives..
She started eating all the things she had craved for. Everything was in puree form.She put on some weight and was 46 kilos when she got discharged.
The year had begun on a terrible note but suddenly things were looking better.We were relieved to see her at home trying to talk, trying to eat, plucking flowers from the garden. After almost 5 months in hospital I knew I had to get back to my life. My work, my marriage, my commitments.I had put everything on hold because I did not want be anywhere else.
I finally got the courage to leave and go to Bombay when I saw her pottering about in the kitchen like the old days making idlis for me one morning. I knew she was back and it made me so happy. It was difficult for me to accept that mum would never be the same. I went through phases of denial.. Dreaming of a time ,convincing myself that mum would be back to her life in Bombay soon. I dreamt of her wearing her beautiful sarees again, running her Balwadi, doing her yoga, and effortlessly being the center of attention like she always is. One day my sister sat me down and beat the words into me.. “Mum will never be what we want her to be.. she wont look the same and be the same in many ways. She has changed physically and we must accept that, but in spirit she is the same..Look at her eyes,look at her smile..she is still our mum. I cried forever that night .Maybe it was all those pent up tears from the days in the hospital when I was trying to be stoic..but those tears that day made me accept some harsh realities.
With my grandma and Dad there I had the confidence to leave. 2 weeks went by.She spoke to me every single day on the phone. We chatted about everything like we used to.

What is worse ?
Mum is never one to complain. So when she started complaining a week after I was in Bombay about not being able to eat I immediately flew back. Dad seemed really disappointed and I knew something was not right.Her eyes were not the same and that frightened me.
And something was surely not right. Mum was down to 35 kilos. When I saw her I felt that awful feeling in my stomach all over again. She looked frail,tired and for the first time she looked at me and said she was in pain.
Again the conversation started revolving around blood tests, doctors and scans.
She just could not eat. The saliva was so thick it was choking her.The food was not going in nor was it coming out. There were moments when she would suffocate. It was the hardest thing to see her struggle. She kept losing weight .She was beyond tired but miraculously always had the strength to sit for 15 minutes and do her morning and evening Puja(prayer).
What is worse ? Seeing your loved one starve and not eat or take a decision to put the ryles tube back in so that she gains some strength, knowing that it may perhaps cause her more discomfort. Mum was plain fed up ..she had a mental block to the tube as it is. But what do you do? How can she wither away. There was no option. Every minute was a struggle.
Buckets of tears, discussions, sleepless nights and finally we took her to the Ent surgeon who did the god awful endoscopy and told us that he could not see signs of the tumor but
Edema had set in and there was a swelling in the throat. We were told by one Ent surgeon before that very bluntly that her end is near , it will be because of suffocation, bleeding or lack of eating!! I was livid with this Doctor and the way he dealt with us. He is supposed to be the most leading ENT Surgeon in Chennai. A family friend consoled us by saying he was only trying to be direct. It is at that time when Dad said..Sometimes some Doctors try to play God and give a death sentence. It is unfair on the family. We know she is dealing with a life threatening disease ..we don’t need to hear how she is going to die and when ! We just want her pain to be relieved. And from that day on we decided we wont take mum to anymore Doctors and put her through anymore endoscopies or scans.

One day goes into the next..
July 2008
Hope..crashed again!
Dad looked more helpless than ever before. He was restless and looking for answers. But we just had to accept things and move one day into the next.
As I sit here next to my mum..The tube is back inside her.She is back on the Diabetic resource feed that was being given at the hospital.
I was at one of my low moments feeling helpless because I just could not see mum suffer. Her breathing was heavy and through the mouth. For 3 nights she was struggling immensely.Gloom was in the air and I just did not like it. Everyone was tired. Mental exhaustion can be the most tiring thing.I decided to log on and google this :
“How do you take out thick saliva that obstructs breathing when the ryles tube is in?”
And in my search I landed up here and started reading all the amazing stories. What Ananth said in his story about not letting the disease overcome you and fighting it is what I see mum do everyday. I read out bits of Ananth’s story to Mum and Dad and told her to keep the faith and fight. I honestly don’t know what will happen next and what we should do as a family next..All I want is for her to be comfortable and sans pain.Hope is a word I wont let go off. Prayer is my anchor. My family and friends are my support. I want to share my story with others to highlight the importance of family support and a positive attitude in fighting this disease. The person who is the main care giver needs to be extremely patient, calm, and listen to what the your loved one says. They know their body best. Sometimes one needs to listen more to them than the Doctors.

Saints :
Yesterday a close friend of mine who is very fond of Mum called me and told me that Ramkrishna Paramhans the great saint fought throat cancer for years. He endured great suffering with utmost dignity.She said your mum is truly like a saint or she is one with some power beyond us ..she has fought this dreadful disease with the greatest dignity.I believe that .Sometimes I look at her and it almost seems like she is silently having a conversation with her Gods!
I believe truly that all the stories that I have read here and all those people who are fighting the cancer with dignity and a positive attitude are Saints in their own way. Through them we learn lessons of a lifetime, they take on suffering of the world to teach us how to value life and respect it. I wish that in the years to come I develop even 10% of the grace and strength that my mother has. In the meantime …I hold her hand ..I pray and I keep the faith…

July 9th 2008
Its ironical because started writing this yesterday upto exactly the last sentence above. I couldn’t finish it because Mum was admitted today at 6 pm. Her breathing was not improving and once again we had no choice. Was the doomsday prophecy of the ENT surgeon actually going to come true. I don’t even want to go down that road. Dr.Raja said we have an impending crisis on hand and we need to be prepared. Dad could do nothing but cry. Hasn’t she suffered enough he asked the Doctor. He had no answer. I had only one question going through my mind..How ..just how do you prepare for something like this?? I am always on tenterhooks when I see her gasp or gesture to me. So here I am in Room 4405 of the Apollo hospital in Chennai completing what I started to write. Its 9.20 pm and I know the days ahead are going to be rough..What happens next..Only God knows!!

Nameeta

Dear Nameeta

Thank you so very much for sharing your story about your mum. There is much that is special about your mum. Reading her story has been inspiring. She has touched so many lives through caring for others, like an angel. Your mum has given so much happiness to her family and friends. You are fortunate to have her as your mum.

I am reminded of another special woman who kept the faith and inspired us all, Brenda Brady, who said, “A happy life is not how many years you have managed to live, but rather how much happiness you have put into the days you have been given.”

Please give our best wishes to your mum. Tell her she is in our thoughts and prayers.

Vinod

Nameeta

I cannot even begin to imagine what you have all been through, but particularly your Mum who is so strong and brave. You, too, who have been there for her and for your father.

At this time there is so little we can say or do except to let you all know that we are thinking of you.

All best wishes
Gwyn

Thinking of you all with a tear in my eye Nameeta. You will see under my signature I am "keeping the faith".

Love Chloex

Thank you.. Mum is critical and has to go in for a tracheostomy tomorrow..still keeping the faith!

quote:

Originally posted by PurpleKitten:
Thinking of you all with a tear in my eye Nameeta. You will see under my signature I am "keeping the faith".

Love Chloex

Thank you..you are all so brave here that i can only be inspired by you..

quote:

Originally posted by Gwyn Fraser:
Nameeta

I cannot even begin to imagine what you have all been through, but particularly your Mum who is so strong and brave. You, too, who have been there for her and for your father.

At this time there is so little we can say or do except to let you all know that we are thinking of you.

All best wishes
Gwyn

Thank you Doctor..for your kind words..as we battle along ..i thank you for the stories that have inspired many and given people like me strength..thank you

quote:

Originally posted by Dr Vinod K Joshi:
Dear Nameeta

Thank you so very much for sharing your story about your mum. There is much that is special about your mum. Reading her story has been inspiring. She has touched so many lives through caring for others, like an angel. Your mum has given so much happiness to her family and friends. You are fortunate to have her as your mum.

I am reminded of another special woman who kept the faith and inspired us all, Brenda Brady, who said, “A happy life is not how many years you have managed to live, but rather how much happiness you have put into the days you have been given.”

Please give our best wishes to your mum. Tell her she is in our thoughts and prayers.

Vinod

Nameeta

What comes across is what a fantastic woman your mum is and how your family has benefited from her guidance and wisdom. Anyone who is feeling the urge to give up the challenge should read back on your story.One thing is for sure ,complacency is a terrible thing and the I have learned never to feel reluctant to contact your doctor for the slightest little sore or lump just to put you mind at ease.

Your mum is an inspiriation but you and your family are an inspiration also. The strength of the human spirit in these situations shines through.I truly believe that all who are touched by cancer whether victim or carers or familiy become better people in some way.All the little issues that cause stress seem to fade into insignificance when presented with cancer and also the treatment of it

take care

Robert

Hi Nameeta, like everyone else has already said. Yours is an inspiring story. Keep the faith. Hagg.

Nameeta,
a very moving and inspiring acount of your mum -your family-and what you have endured.
Your mum is fortunate to have such a strong,loving and supportive family. You are definitely your mother's child and your moving acount is a testament to her strong will and that of her family.

tony k

Nameeta, I too have watched my mother on a similar journey, although she now seems to be on the re-building phase, rather than the destruction and devastation caused by the surgery and radiation.

She has had a very similar journey to that of your mother's and I too will never forget the look on my dad's face when he and I went to see her the day after her 10hr operation. My heart sinks to my boots when I think about it.

I just hope when the time comes, for all our loved ones (and us) to leave this world, we just go to sleep, painless, warm and loved.

My heart goes out to you.

Hi all,
Mum gave us all quite a scare last week.She was rushed last week to the critical care with excessive bleeding. She is back in the room now and we have all just stopped asking anymore questions.
I updated my blog and continue to write as Mum keeps fighting..she is truly an inspiration.Would love to share it with all of you here..

www.nameetanair.blogspot.com

Thanks for the update - quite amazing....

Hi Nameeta

Have just read your blog. Your mother is truly an amazing woman.

Gwyn

Your blog is such a beautiful tribute to your mother. It's obvious that she's passed all her traits onto you, a very remarkable young woman. I managed to shed a few tears and at the same time missed my own Mom very much.

I read your blog when you first posted and have wondered off and on about your Mom and your family ever since. Please keep us posted.

Take care of yourself too, sweetheart.

Mimi