Chapter 5 – First 3 Weeks

“Om Sainathaya Namaha” 

I narrate these events with an intention that they might be of use to anyone who is planning to undergo a similar procedure. I have tried to list down the challenges I faced during the first 3 Weeks post my surgery and solutions which came my way.

However, as I have written in my earlier post, the challenge and how to deal with it may differ from person to person. 

Hospital – Today most hospitals that deal with such surgeries are well equipped, hence, it is better to follow the advice of your main surgeon/doctor as to which, hospital you should get your surgery done. I insisted for a particular hospital as I felt it was better equipped to handle my case, this choice was not the preferred choice of my main surgeon and as I came to know later, he would have undertaken my facial reconstruction along with my surgery if I had got the surgery done in the hospital that he preferred and the one that was in his comfort zone. 

After a few months, when I inquired as to why the reconstruction was not taken up along with my surgery as is the norm, this is the explanation my surgeon gave:

1. Unrestricted use of Operation Theatre was not possible/allowed in the hospital of my choice. My surgeon did not have any say in this matter as he was a visiting surgeon performing one-off surgery here at the behest of his patient. 

2. A complicated process of connecting a blood vessel to the artery of my neck needed to be done during reconstruction and once completed this required close monitoring over the next 48 hours by the surgeon carrying out this procedure. My surgeon was located very far away from the hospital of my choice, hence he did not want to risk any complications leaving me unattended post reconstruction. His preferred choice of hospital was just walking distance away from his residence. 

3. Unfamiliar support staff at the Operation Theatre of my choice. The surgeon is always comfortable and at ease when he is supported by the staff with whom, he has conducted similar procedures in the past. 

4. Last but not the least, doctors attending to me did not expect the Tumor to be malignant and hence did not plan ahead for re-construction. 

Message: “Allow the events to flow as Shri Sai has intended them, do not use your intelligent brain for everything.” 

Riles Tube – This is a sterilized plastic tube inserted by the Anaesthetist from your nose all the way to your oesophagus to keep you nourished with healthy liquid diet and medicines till such time you are able to eat normally using your mouth. You can have all types of healthy liquid food e.g. fresh fruit juice and other similar energy drinks through this. I used to mostly have protein shakes in milk and prescribed medicines every two hours. This diet resulted in severe and painful constipation at the end of 3 weeks and I had to visit a hospital and take Enema to be relieved of this condition. 

Prosthesis – An artificial silicon part resembling my left upper jaw had to be made so that I could speak and eat through my mouth. I was under the impression that this would be done within few days post my surgery and I would be able to speak and eat normally. However, a prosthesis can be made only if; 

• The surgery wound heals completely. This healing takes at least 3 weeks. 

• The Dentist is able to take necessary measurements without hurting exposed mouth tissues. Mouth opening should be comfortable for taking measurements. It takes about 3 to 5 working days after the measurement to manufacture the Prosthesis. Finally, the Prosthesis is expensive. Cost me INR 35,000. 
  

Expectations & Challenges once Prosthesis is in place – I was very excited that my Prosthesis was ready and I can be back to normal speech and eating. This is how the events played out:

• It felt as if some plastic piece is in the mouth and I wanted to remove it as soon as I put it in. 

• I was not even able to have few sips of water the first time I put it in. Water just flowed through the prosthesis and came straight out of my nose. 

• I thought I will try eating a small piece of idly, I put a small piece in my mouth and I did not know how to chew. Then I tried eating banana cut into small pieces; no success. My elation turned into depression. I realized I had to re-invent eating all over. 
  

My Prosthesis 

Message: Do not have undue expectations and preconceived notions, let situations unfold and deal with them as they come up. Have faith & patience. It will happen. It has taken me almost 8 months to learn to eat normally. 

Challenge Life. 

LIFE IS BEAUTIFUL