Hi all,
As you may read my story, you will see that though I have my vocal cords intact - they are completely fixed as on date. It was as good as becoming a "lary" ( maybe worse - as larys can atleast eat orally ) as I could not only use my voice but also I could not take any kind of food - solid, semi or liquid orally. All my food had to be specially made ensuring high protien etc. all mashed and pureed and then of course pour it through the "peg tube" which has become my friend for the last six and half years. A lot of things have passed since I last posted an article here and hope that Doc. Joshi does get to read it and would love to hear his reply or response.Let me start how tough things are in India especially to obtain simple things a peg tube. There is only one importer in Delhi and its not really sure if he does have a particular product or no. He imports equipment as per demand and I do not think there are too many demands for peg tubes. I had gone for an Indian Cancer Society meeting ( they love to use me as a front piece!!!) and I felt my T.shirt all wet and initially I thought that my tube had opened up and all my 'food' had leaked out until I put my hand under my jacket to feel the same. I had a hand full of blood as I pulled it out. I excused myself from the meeting and went to the other room and picked up my t.shirt and found that the peg tube had totally popped out and the bleeding was no going to stop till a new one was inserted. I decided to remove the useless tube and bin it and luckily as I was carrying a hand towel, I managed to hold it tight against the wound to slow down the bleeding. I then called up my wife, who has really been one solid pillar standing by me during all my ups and downs in the past six years . She managed to reach the supplier and I was in luck - he had two tubes and I told her to buy both- keeping in mind that we should keep one spare for times like this. I was told it would take at least four haours for the tube to reach me and the doctor was not available for another two hours after having got the tube. As there was nothing i could do - I carried on with the meeting and even drove the president of the association to her residence. I reached home just in time to see the tubes arriving and in no time contacted my doctor who luckily was at the hopsital on some work. I went across and he inserted the new one and so far so good. He thought I was crazy that I sat through a meeting as well as drove a good 40 kms one way ( 80 both) holding onto my wound and my car has manual transmission! Anyway - alls well that ends well.

I found that I had a pretty decent free time on my hands, though as they say I had a finger in every pie. I went shopping with my wife ( I love to suck on my chocolates and then bin them after getting their flavour, just as I enjoy my hamburgers, pizzas and much more ) and walking down on of the ailes I noticed a section selling baby products. I noticed that the feedinbg nipple was made of high grade silicon and would not do any damage if I tried to do something with it to get myself to talk without holding my throat as I had done in all these years. I think I must have destroyed much more then just a couple of hundred nipples till I met up with the manafacturers who were very kind and will be working closely with me on this product.They send me a massive amount of the same and it was back to the drawing board and finally I hit the right spot where I could breathe and speak as normally as the next person ( who had a voice!.I made a few more protos and put one on to see the impact it would make - and you all should have seen the expression my families face !!. I then went for my normal check up and the doctor had already known about my new 'creation' and had seen it working. He was sitting in his room with a youngman in his 20's and alongwith him- his mother ( who was in tears and young boy totally depressed as he had no voice ). The doc. called me in and let me put it excatly as the converstaion went:
Doc : "Hello Ananth- I would like you to meet xyz and his mother.Xyz, this is Ananth and he has excatly the same problem as you have though he has taken a far worse battering".
The mother and the boy were not too impresed until I talked and asked the doc. what he wanted me to do. The mother would not believe I had no voice until the doctor aske me if I could make the young lad talk. I was luckily carrying some more protos imn my pocket - so everything was set for another trail. I had the piece, the hospital had the sterilising stuff and the doctor was there in case anything misfired. I told the young man to trust me and that it would not pain at all. All I needed him to do was take out his stoma button and give it to me. He was a bit scared initially but as the doc. was there he removed his stoma and gave it to me. I attached " my orator" to the stoma button and with the help of some local anesthesia slipped the same back into the tracheostomy. Nothing seemed to happen and all I told him was talk and then next moment his mother was crying and hugging me and so was he. I think that was one of the best moments of my life when the doctor had such immense faith in what I was doing and the feelings of the young lad and his mother.
Well friends - I have applied for a worldwide patent and as soon as it is through it will go into production with the Company I spoke about and as they already have a distribution network in place it will not be difficult to have them selling all over India. The imported variety costs about US$ 160/- and we are planning to sell the same at US$ ( really expensive- so be prepared -!!) 50 cents!!!! - all streralised and packed as per international standards. I will obviously give the hospital a promised 100 or more free every month. It will be really good to see many more people who will benefit from a simple creation made from a feeding bottles nipple!

Hello Ananth

I look forward to your product becoming available. It would be great to have an innovative idea from a patient being successful.

I will reply your earlier email later (been so busy at the moment). We need to see how we can help mouth cancer patients in India.

Best wishes

Vinod

Dear Dr. Joshi,
Here is wishing you a very happy Christmas and just in case I am a bit delayed - A Very Happy New Year. I hope the coming year will bring better tidings and a lot of solace and peace for everyone in the world ( not just our Larys world ).
Have a lovely time.
With warm regards to not just you but to all those who have found you to be such a kind inspiration.
Ananth

Dear Ananth

My name is Kelley & this is the first time in a few years since I have been back on this site. I just wanted to say thank you for sharing your story on the home page, your journey is truly amazing & your strength & determination is an inspiration to us all. I really love how your humour shines through even during the most challenging times in your life, being able to laugh at yourself is a gift. The blonde hair & blue eye contacts I'm sure must have bought many laughs to those around you.

Now after browsing the general chat & reading about your 'Orators' I just wanted to say congratulations! It may just be a simple little silicon teet that most people wouldn't even think twice about... but for a person enduring the pain & frustration of having a tracheotomy you have given a whole new hope. The gift of speech, it's just amazing the things that we take for granted.

I only had my tracheotomy in for a few weeks but that was hell if I ever knew it so I take my hat off to you for enduring living with yours for so long. It is so wonderful when something good comes from something bad... so now many, many more people will be able to benefit & enjoy the gift of speech because of your perserverence!! You should be really proud.

Warm Regards
Kelley

This message has been edited. Last edited by: Kelley,

Dear Kelley,
Your good wishes have ment a world of good to my morale and its people like you who keep me going.The problem was, though I always had a sense of humor, I let my work become the centre of my life even surpassing my family. I guess this was one way where I learnt to find a long forgotten thing.I really never had a chance once I started working in the corporates to dress and fool around as I wanted and now that I have all the time in the world - its a ball making all and sundry have a good laugh at my expense. I change the color of my hair, grow it long at times and wear a earring ( on my left lobe - please ) and of course the contacts of which I am building up a substantional collection. One thing I learnt very early during the course of my cancer was never to look back or regret anything good or bad I had ever done in the 42 years. I have never regretted my smoking or anything else that may have contrributed towards the cancer. Ilooked at it very positively - it was ment to be and I was chosen and there was nothing I could do about it as there was no manner I could turn the clock back.
Yes, the 'orator' has taken the medical fraternity by surprise and after a lot of testing I got the go ahead. I have always wanted to do something for the millions of Indians who have been through the same hell but do not have the resources to live through the same. Most of them cannot even afford to have one meal a day and there is no government support whatsoever. The orator was a fluke and funnily enough the idea struck me as I was walking down the asile of a market where I say the nipples. As they were in silicon of high quality and untouched by hand - I picked up a few and took them home. It took a number of trial and errors to get it on track. I decided to get in touch with the manafacturer of the nipples and they were very eager to join forces and certainly not for the money. I really dont know how many of the nipples I must have gone through - but finally hit the right spot. I began wearing a proto and when people who knew me met me found something wierd about me - I was talking! My voice was as close to normal as it could get. The television networks and media have got a wind of the same and have decided to have an hour dedicated to my story and the orator to be aired this coming saturday.

I had the option of a reconstruction of both my air and food passage through skin grafting and I totally refused to even consider it as I have enough of hospitals for a 'lifetime'. I no longer have the kind of craving to eat or drink normally as I get a complete balanced diet through my peg tube and everytime I want to eat chocolates of even a pizza, I buy one as anyone else - chew on them and bin it. This gives me the satisfaction of having tasted it. Life is full of ups and downs and I have just accepted that this is how my life is going to be and should just get on making it a happier one not only for my family but also all those poor people.I have led a full life and as you must have read my mothers quote - that I have lived in 42 years what people will not live in their lives to come ( if you believe in reincarnation! ).

Kelley, once again - thank you for making my new year as special one. If you ever want to communicate with me independently you could at ananthshenoy@email.com.

Take care, keep well and have a wonderful 2007 and all those many many years that will follow.
With warm regards,
Ananth

Happy new year Ananth. May it be a healthy one.

I read your account of your adaptation of the silicon nipple with great interest. I am fortunate in that despite being a head and neck patient I have not had your particular treament. However I had a great aunt who had a larynx operation in the 1960s and recall her hole in the neck with a little tube sticking out and all swathed in scarves. I recall how she would try hard to make herself understood with a series of croaks and her frustration.

Your invention sounds as if it will improve the lives of many people and you are to be congratulated for persisting with your idea. Good luck with this.

Dear Ananth

What a delight to read your reply, thank you. I do laugh reading some of the things that you say, your humour certainly shines through! Once again just amazing that you have created the potential to help so many, many fellow Indians who may not be as fortunate as you in having access to the type of medical care you did. You really have done a wonderful deed in helping yourself & extending that help so others may also enjoy the benefits that you have.

As far as the choosing not to have any type of reconstruction I totally respect your decision as I cannot even imagine how that would be for you. I have enough trouble with my skin graph as far as dryness & mobility & also swallowing after the effects of radiation so I cannot imagine how it would be to have your food passage lined with a skin graph? Although in saying that don't they use some of your bowel for this as at least then it has a mucus membrane for easier swallowing? Well I think that we all have to make our own decisions about what is best for us, & what makes one person happy may not be the right choice for the next. I think that it's fabulous you still chew the food you crave just for the pleasure of taste. I can sympathise with you as when I could not eat for months I use to watch others gain enjoyment from eating & this would give me my own pleasure. It's funny how its the simple things in life that people take for granted. Before this ever happened to any of us who could ever have imagined not being able to chew, to taste, to enjoy food for social & nourishing purposes or in your case Ananth not being able to eat at all. It's almost beyond comprehension but like you said it is our life & we must move forward & make the most of it. This is no dress rehearsal & time is of the essence for all who are fortunate to have time on this earth.


I have added your email address to my contacts list. This is an sms that I received on NYE & thought that its a little saying worth sharing;

'ALWAYS REMEMBER... LIFE IS SHORT, BREAK THE RULES, FORGIVE QUICKLY, KISS SLOWLY, LOVE TRULY, LAUGH UNCONTROLLABLY AND NEVER REGRET ANYTHING THAT MADE YOU SMILE'

Happy New Year & I look forward to reading your future posts.
Kelley

Dear Kelley,
It was my pleasure that you replied to my mail. I really enjoyed reading the same ( especially when one praises me!!!). I also liked the saying and especially the - kiss slowly bit!
You live in a wonderful country and in fact my in laws and my younger brother and family have settled down there down under. While my in laws are in Melbourne ,my brother lives in Sydney. I did want to make more trips but once the cancer struck it was pretty much out of the question - but I do have some fond memories of my trips down under. In fact my I recall my firt visit was in 1996 when Melbourne hosted the first fomula one ( which Mercedes Benz won - the Company of which I was head of sales for the Indian subcontinent). That was one visit which I will never forget as I was able to get right into the pits and also actually got to get into one of the cars. I missed the pretty girls though!!... but did make up for that in Mexico when I did race a fomula three car. I did not do too well but really loved the female company all around me !! .
Do let meknow if there is anything I can do for you from this part of the world as I have a lot of people travelling to and fro to Australia and could always send you anything that you may want from Incredible India!
Take care and with warm regards,
Ananth

Dear Pauline,
A very happy new year to you and your family and truly hope its going to be one great year and the ones to follow even better.
I know how miserable it is when one does not have a voice and wants to communicate but just cannot. It is so frustrating. Most often even the doctors do not give the complete details as an example of another cancer patient with who I became friendly - his doctor never told him he could talk by putting his thumb on his tracheostomy and spend three months writing in note books as to what he wanted.
The orator was pure luck as anything that I was sure would not cause any complications or infections were all possibilities of generating some kind of a gadget one could use for a normal speech. I really never expected it to work but then.... Today, most people cannot even make out that I have had a tracheostomy and have no voice and answering them is quite a task. I am still using a proto and my speech is totally normal and am able to give presentations etc. with much of a problem or strain. I will be introducing it formally on television on one the most watched channels this coming saturday and hope that people will be able to reap all the benefits that they could not till date. As I mentioned- an imported orator costs about 7000/- Rs (divide the same by about 70/- to get the price in pounds ), which is almost impossible for most of the cancer patients to get as they are all below the poverty line and let alone an orator - even a healthy meal is a problem. We are putting the orator into the market for about Rs. 20/- fully packed in steralized bags and untouched by human hands. We have also decided to give abouta 100 odd pieces to the hospital where I got treated free of cost and also to an NGO which I have been supporting for some time now.
Do keep writing in as its always a pleasure to make new friends. My email id in case you would like to use the same is : ananthshenoy@email.com.
So Pauline once again - A very happy 2007 and hope ( know!) this year will be the very best till 2008 comes along.
With warm regards,
Ananth