Jocelyn Moodley – My miracle surgery

Jocelyn Moodley tells us about her miracle surgery after being diagnosed with salivary gland adenoid cystic carcinoma and how living was far more important than her facial appearance.

You can listen to this article below, or by using your favourite podcast player at pod.link/oncologybuddies

Jocelyn Moodley (50) lives in Alberton, Gauteng with her husband. They have three adult children.

Bump on palate

In November 2005, Jocelyn felt a slight bump on her palate. When she went to a GP, he couldn’t see it, so he referred her to a dentist as he thought it was overgrowth of wisdom teeth. The dentist, however, said Jocelyn never developed wisdom teeth. After going back to the GP, she was referred to a maxillofacial surgeon, but he was on leave so Jocelyn left it.

In February, the next year, Jocelyn had the most excruciating earache, so she went to the GP again and was referred to another maxillofacial surgeon. A CT scan was done and then a biopsy. It was confirmed as salivary gland adenoid cystic carcinoma (ACC), a rare cancer in a rare place (above the palate in the sinus area, settled in the hard palate, just missing the eye but already in the nerves).

Six surgeries in six weeks

Jocelyn then met with a group of doctors: a prosthodontist, ENT surgeon and maxillofacial surgeon. Even though the cancer was slow-growing, extreme measures were needed as the mortality rate for this cancer was extremely high. The ENT surgeon would remove the cancer, the prosthodontist would place the zygomatic implant to hold her new teeth and gum, and the maxillofacial surgeon would perform the surgery.

It was explained that the skin on her face would need to be cut (from her lip up to her nose and around the eye) and flap it open. When hearing this Jocelyn recalls that was the moment she realised how serious the situation was. She was calm; her husband was overwhelmed but supported her all the way.

“I decided immediately that I would go ahead with it as I had three kids to bring up. The side effects of my appearance didn’t bother me as much as me dying and leaving my husband and kids.”

“I remember the ENT surgeon saying he had never cut a face as young as mine (Jocelyn was 33) and joked he didn’t want to cut my pretty face.”

The ENT surgeon then went on to explain that he was going to try his best to take her jaw apart and do a tracheostomy (so she could breathe during surgery), so he wouldn’t have to cut her face, but he couldn’t guarantee that would be an option.

Miracle surgery

When Jocelyn came to after surgery, she kept on touching her face and the nurse came to her and said it’s a miracle that they didn’t cut her face. Thereafter Jocelyn underwent another five surgeries, one surgery every week until clear margins were found.

In the meantime, the palate covering was being made, fitted and adjusted. The mother wasn’t able to speak due to the tracheostomy and was fed through a feeding tube until a temporary plate was made to enable her to eat, and then finally the permanent fixture was inserted weeks later.

Living on milkshakes

Jocelyn says the recovery was extremely painful but was nothing compared to radiation. “It was the worst. I had 31 sessions via the head through to the mouth and even though a syringe was used to keep my tongue decompressed, it still got impacted with sores on the side, as well as my gums. I would often bleed from my mouth and even through my nose.”

“The oral hygienist told me to brush my teeth with a toothbrush, as I was using my finger because it was so sore, and when I did pieces of my gum came out on the toothbrush. That is how bad it was! My taste buds were also totally mangled. Then my jaw locked, and I couldn’t eat again; I had to go for physiotherapy. During this period,I lived on sips of Ensure but mostly McDonald’s milkshakes.”

Spiritual experience

Jocelyn attributes a spiritual experience to her fast recovery thereafter. “When my jaw locked, I was in so much pain and I wanted to stop radiation and give up because of the damage it was causing, feeling parched all the time and the extent of agony and weight loss, I was emaciated. That’s when I had a spiritual experience in the third week of radiation. When I woke up I was filled with so much love, joy and happiness and from there my recovery went rapidly,” she explains.

Despite a slight pull of the face when Jocelyn smiles and tissue flare-ups every now and again (which is treated with antibiotics), Jocelyn has had no other long-term side effects.

“I was so fortunate with my surgery, other survivors have lost a nose, or an ear or are left with facial deformity, where I wasn’t, and for that I have to thank my excellent team of doctors and God Almighty,” Jocelyn says.

Invited to Europe

Once Jocelyn finished treatment, she connected with other ACC survivors only found in Europe at the time. She was then invited to attend a patient-doctor conference in 2007 and went often thereafter before COVID, becoming a motivational speaker on cancer.

Heal Better

In 2007, Jocelyn started her path of helping various NGOs in the cancer community, such as CANSA and Look Good, Feel Better. She has assisted them on various projects and fundraisers throughout the years.

This year Jocelyn started a joint non-profit organisation, Heal Better, which has a focus on women and children who have survived cancer and trauma. She is planning the first fundraiser, for Heal Better, in May, which will commemorate 17 years since her miracle surgery.

Photo by Antoinette van Staden Photography – Follow on Facebook & Instagram
Venue: Ascot Mews – Visit ascotmews.co.za
Make-up: Jeanine Artistry – Follow on Instagram @jeaninejacksonartistry
Hair: Roz Mott 
Jewellery: Daintyorchid