Cancer patient fighting to get his voice back

 When I call him, his wife answers and tells me her husband cannot speak on the phone. I immediately become skeptical about scheduling a physical interview fearing that he was sick. 
When I suggest to call later, his wife advises me to send a text instead. We continue communicating using texts until the day of the interview.  
When he talks, I can hardly hear him because it is a whisper. So, I move closer which makes him look uncomfortable. This is when I decide to use my notebook for us to communicate, which he embraces happily.

“This is what I do in most cases. I have a notebook (pulls it out and starts to write). When I came here, I tried to speak but no one understood me until I wrote. But it takes a lot of time and some people cannot read Luganda or English,” he notes.
Benson Sande, 58, a resident of Kyebando in Kampala, suffers from cancer of the throat. 

Symptoms
In 2014, Sande lost his voice (aphonia) and it sounded hoarse. Being a Born Again Christian and an elder in the church for more than 15 years, he thought he had just overstrained the voice while singing but the problem continued for weeks, months and years. 

“Each day, the voice sounded more hoarse and strained. I prayed for God’s healing but there was no answer. My voice only came out as a whisper which compelled me to go to the Ear Nose Throat (ENT) department at Mulago National Referral Hospital in mid-2018,” he says.
At first he was put on voice therapy and was advised not to talk for a week. This treatment continued for a month but nothing changed. The doctor then suggested closely examining the throat.
“I saw the expression on the doctor’s face. It must have been horrible butthey did not want to scare me. I was then asked to do a biopsy and I was diagnosed with cancer of the throat,” he recalls.

Treatment
The news was not only saddening but also frightening for Sande. He was told he needed surgery to remove the voice box as soon as possible or start chemotherapy but it was hard for him to choose since he had seen many friends die while on treatment. He went home, believing in a miracle from God. He continued singing and serving in church and one day as he sang, he could not speak anymore and was having difficulty breathing.

“I went to hospital by myself in February 2019 and the climbing lane towards the cancer institute felt so far away because of the escalating breathing problems. On arrival, an incision on my throat was immediately made and a tube was inserted to keep the airway from blocking completely while I waited for the main surgery to remove the voice box.”
Several tests were done and thereafter, the surgery in April. Fortunately, Sande did not pay for the surgery except for the tests. After the surgery, it was not necessary for him to take cancer medication because the cancer cells had not yet spread to other parts of the body.

Alternative
When the voice box was removed, it was replaced with a device (Blom Singer Voice Prosthesis) that would help him speak. This has to be removed and cleaned and replaced regularly.
About three times, Sande would go to hospital to have this device cleaned and changed until January this year when the doctor told him that the one he had cannot be put back because the muscles around the throat had grown bigger. Putting it back would be a great risk to his life.
“I cannot have a new one because they are out of stock and they are usually imported from the USA at a cost of between $70 and $350 dollars (between Shs261,000 and Shs1.3m), depending on the brand. This is the reason I am not audible,” he says.

Complications
Throughout the interview, Sande keeps adjusting the neckline of his vest. When he laughs, his vest seems as though it is being blown by wind at the point where the collarbones meet. He can hold his nose and not gasp for breath because he breathes through a hole. The hole is located where the prosthetic voice box is meant to be. It is delicate and according to Sande, it should be kept away from water or dust. 

“Dust and water will go directly into the lungs through the hole. It feels like water accidently getting into the nose, causing extreme pain. My commonest challenges are flu and cough which I suffer from almost every week and are uncomfortable. I still cough through the hole and flu causes the muscles of the throat to expand,” he says.
Another challenge is that he is allergic to perfume, coldness and dust. Through experience, he realised that some foods such as concentrated milk, bongo, and eshabwe also him cough. He, therefore, takes a lot of beetroot, soursop (kitafeli), vegetables and greens. 

What are other throat cancer types?
● Hypopharyngeal cancer: This cancer affects the part of your throat that is just above your esophagus and windpipe.
● Nasopharyngeal cancer: This is a rare type of throat cancer. It affects the part of your throat that is just behind your nose.
● Supraglottic cancer: This cancer starts in the upper part of your larynx. It can affect your epiglottis, the cartilage that keeps food from going into your windpipe. About 35 percent of all laryngeal cancers start in your supraglottis.
● Glottic cancer: This is cancer in your vocal cords. Your vocal cords are in the middle part of your larynx. More than half of all laryngeal cancers start here.
● Subglottic cancer: This cancer starts below your vocal cords in the lower part of your voice box. About five percent of all laryngeal cancers start here.

Source: my.clevelandclinic.org