Uppal Shah's story
I am now a neck breather. I breathe through a small opening in my neck, called a stoma.
Uppal Shah is from Kolhapur, where he runs a business in the sugar industry. In November 2022 a routine check-up found stage four cancer in the lymph nodes around his voice box, and he had a total laryngectomy that month. This page follows what happened to him and sets out what to do, and what to avoid, if you are living as a neck breather.
How was the cancer found?
“In November 2022, I went in for a routine check-up. It was a weekday. I had a meeting scheduled for that afternoon, and I expected to be home in time for lunch.
Instead, I heard the words ‘stage four.’ The cancer was in the lymph nodes surrounding my voice box.”
What did the surgery change?
“On 21 November 2022, surgeons performed a total laryngectomy. They removed my voice box, my vocal cords, my thyroid gland and the lymph nodes around them. My mouth and nose no longer connect to my lungs. I am now a neck breather: I breathe through a small opening in my neck, called a stoma.
I now speak through my food pipe. The sound is quieter than my old voice, and a little rougher. The first time I heard it, it sounded like a stranger speaking from inside my own chest. It took time before I recognised it as mine.
The voice I had used for twenty-five years, to negotiate, to close deals, to laugh with my family, was gone.”
What this means in daily life
- You breathe only through the stoma. Air no longer passes through your nose or mouth, so it is not warmed, moistened or filtered on the way in. A heat and moisture exchanger (HME) worn over the stoma does part of that work and cuts down coughing and mucus.
- Your airway and food pipe are now separate. Food and drink cannot go down the wrong way, but swallowing can feel different.
- Smell and taste change, because air no longer goes through your nose.
- Your voice changes. There are several ways to speak again. Uppal speaks through his food pipe. Others use a voice prosthesis or an electrolarynx.
How did he manage treatment and work?
“Chemotherapy began, and radiation alongside it. The days took on a new rhythm: hospital, rest, emails, hospital again. I answered messages between sessions and read reports in waiting rooms. My phone became my voice. I typed what I could no longer comfortably say.
The conference we had started for the sugar industry was set for 7 January 2023, in New Delhi. My team asked whether we should postpone. We didn’t. I reviewed the agenda line by line from home and from hospital corridors. If I couldn’t do something in person, I made sure someone I trusted could.
Forty-seven days after my surgery, the conference went ahead in Delhi. I wasn’t in the hall. We set up two cameras, one on the audience and one on the stage, and I ran the event remotely.”
What to take from this
- Treatment and recovery take time and energy. Plan around them, and hand work to people you trust.
- A phone or notepad is a good back-up when speaking is tiring.
- Ask your care team before you take on big commitments.
Do’s and don’ts after a total laryngectomy
These are general guidelines, not Uppal Shah’s own words. Your surgeon, speech therapist and care team know your case, so always follow their advice first.
Stay away from water
Do not swim, boat or go into deep water. If you fall in, there is no way to stop water pouring into your stoma and lungs. You could drown or be seriously hurt. Pools, the sea, lakes, rivers and boats are all unsafe. It is safest not to do these activities at all.
Don’t
- Don’t swim, snorkel, dive, paddle or go out on a boat, even in shallow water.
- Don’t sit in a tub or pool with water above your chest, or pour water over your head.
- Don’t let a stream of water hit the stoma directly, in the shower or anywhere else.
- Don’t stand near water alone if you might slip or fall in.
Do
- Do shower with a shower guard that clips onto your HME holder. It is made for showering only, and it will not protect you in water.
- Do keep the water below your neck and face the shower away from you, so it runs down your body and not into the stoma.
- Do reinforce the edges of your adhesive with adhesive strips before you shower, so it does not lift.
- Do use a shower guard with a tube or button only if it fits tightly in your stoma.
- Do keep a safe distance from the water at the beach or on holiday, and tell the people you are with why.
Protect your airway and your skin
Do
- Do wear your HME all day. It cuts down coughing and mucus and keeps the air you breathe warmer and moister.
- Do use a protective HME in dusty places, when gardening, and when you travel by bus, train or plane. It helps keep out dust, pollen, bacteria and viruses.
- Do look after the skin around your stoma. Remove adhesives gently, clean the skin, and use a night adhesive if your skin is sore.
- Do tell your clinician if your skin is red, sore or broken.
Don’t
- Don’t go without an HME because it feels like a nuisance. Coughing up mucus all day wears you out.
- Don’t cover or block the stoma, and don’t let dust, powder, smoke or water get into it.
- Don’t pull off a stuck adhesive. Loosen it gently first.
Eating, smell and taste
Do
- Do take your time, take small bites and sips, chew well, and alternate bites of food with sips of liquid.
- Do try the “polite yawn” to smell again: keep your lips closed and slowly lower and raise your jaw, which draws air into your nose. Chewing well and eating food while it is hot also help.
- Do talk to your clinician if swallowing is hard. A speech therapist who works on swallowing can help.
Don’t
- Don’t rush meals or take big mouthfuls.
- Don’t ignore pain or trouble swallowing. Report it early.
Recovering and getting back to life
Do
- Do start moving early, as your team allows. Gentle arm and leg movements in bed and short walks help recovery, and you can build up the distance each day.
- Do go out and enjoy life once you have recovered. Carry spares: extra HMEs, adhesives, wipes, a small mirror and a torch, and a brush if you have a voice prosthesis.
- Do keep emergency information with you, such as a neck breather bracelet, and tell family, friends and colleagues that you breathe through your neck. See the emergency page.
- Do plan travel ahead, and find out where you can get help in the places you are visiting.
Don’t
- Don’t overdo it. Pushing too hard raises the risk of a setback, so go at a steady pace.
- Don’t hide the change from the people close to you. Partners and family often worry as much as you do, and they cope better when you talk about it.
Uppal Shah’s account has been adapted, with his permission, from a longer interview and edited for length and clarity. The do’s and don’ts are general guidance compiled for this site from patient information and clinical advice, and do not replace advice from your own doctor or speech therapist. The illustration is based on Uppal Shah’s own caricature, which he chose to share.
