Pauleen Wilkinson

Tongue cancer fails to silence chatty Pauleen

Words Jill Nicholas

Pictures/video Stephen Parker

On January 24 this year Pauleen Wilkinson’s throat was slit from ear to ear. Muscle came out of her left arm and skin below her wrist was sliced off.

Horrific as that sounds the good news is she wasn’t being subjected to a brutal attack. The bad news is a cancerous section of her tongue was being excised and rebuilt by three skilled surgeons. With that comes even better news – her prognosis is looking positive. 

Eight months on from the 12 hours she spent on a Waikato Hospital operating table Pauleen’s back to being her effervescent self.  

That’s apart from a minor speech impediment and a major weight loss. She’s as chatty, active, vivacious and funny as ever she was, and plucky as hell with it.

Sharing her experience is a powerful part of Pauleen’s coping mechanism. She regularly posts about it on the Facebook blog she’s created. It’s generated a significant following.

Now it’s In Profile’s turn to provide the platform for her to give a personalised account of the choppy waters she’s navigated this past year. They run deep, but Pauleen remains physically and mentally upbeat.

There’s no airbrushing of the torturous time she’s been through. She tells it like it was, sharing it not for her benefit but that of others. If it helps someone else that’s all good by Pauleen. She’s emphatic she doesn’t want sympathy; she’s far too independent for that.

Tongue pimple 

This long-time Rotorua resident’s story starts exactly a year ago when she became conscious of what she considered was a pimple on her tongue. She ignored it. By October it had grown exponentially.

“I went to eat a cheese roll, it was so painful I knew my tongue had to be looked at.”

That was easier said than done. The pandemic had changed the way doctors interacted with patients.

Initially she was told she couldn’t see a GP but could have a phone consultation.  

“I said ‘no, you need to see it’. I went to the surgery and explained that to the receptionist. She talked to a nurse who sent a message back that there was no point seeing me because she couldn’t do anything for me.”  

Pauleen remained adamant that a doctor needed to check her tongue.

“I poked it out, the receptionist said ‘Oh my god’ and rushed off to talk to one.”

Within a couple of hours Pauleen was seen, prescribed antibiotics and referred to a specialist.

Cancer diagnosis, surgery

“A fortnight later I was poking my tongue out at the specialist, I’ve got very good at poking it out at people. He put his hands gently on my shoulders and said ‘I’m sorry, Pauleen, it’s cancer, but it’s curable.’”

Recounting this brings a ‘pass the tissues’ moment. 

“I haven’t been this emotional for a while,” this normally stoic woman confesses. She apologises profusely. She has our assurance if anyone’s entitled to a wee weep she is.  

The specialist sent her to Waikato Hospital. There the news was broken that she needed an operation, not just any operation but a very big one.

“I was told half the left side of my tongue would be removed plus the lymph nodes from my neck. I remember a surgeon pointing to the top of my left arm and saying he’d take muscle from there to attach to my tongue.

“I had visions of a hairy tongue and said ‘I don’t want that’. A lady surgeon was going to graft skin from my wrist.”

Operation’s aftermath

Pauleen woke in ICU to find her throat had been slit from ear to ear to remove three cancerous lymph nodes.  Non-cancerous nodes were also excised.

In the early stages of her recovery she hallucinated. 

“I’d never experienced hallucinations before. I was groggy from all the drugs. I wasn’t able to speak at that stage so I wrote on my pad ‘Am I going mad?’.”

Within days she discovered if she spoke slowly she could be understood.

Several times a day a “gadget” was placed on the new muscle to confirm it had a pulse and there were injections every hour.

“I had trouble with thick salivia, it was horrible and made me gag. Now my mouth gets so dry it feels like concrete.”    

Thirteen days after her surgery Pauleen was transferred to Rotorua Hospital. She was home soon after, declining all the assistance she was entitled to. 

“I didn’t want to be lying in bed or sitting around while other people did things for me. It took half an hour to make the bed, but I was determined life returned to normal as quickly as possible. From the top of my chest down I was fine.”

Chemo declined

Home help wasn’t all she rejected. There was a big fat ‘no’ to what she considers was  the “hard sell” of chemo and radio therapies. One “hard seller” rubbed her up the wrong way. “He kept looking at my support person, not me. He made me feel incapable of understanding what he was telling me.”

She wrote a letter of complaint to his department head. 

 “He phoned, apologised and said he’d speak to the person then tried again to get me to change my mind.” He failed.

“The reason I decided not to go ahead with chemo or radiotherapy was because I’d heard about so many things going wrong with people’s health afterwards. I was starting to drive again, get back to my groups, be with friends, go to the movies, lead as normal a life as possible.”

New normal

How normal is normal for Pauleen Wilkinson?

“I guess about as normal as I can be. My thumb, two fingers and the scar on my left arm still tingle. My throat and left ear are partially numb which gives a weird sensation when I’m bathing.”

Solid food hasn’t passed her lips since the cheese roll episode; that was towards the end of last year.

“I used to be chubby, now I’m a walking skeleton. My weight’s gone from 75.05kgs to 51kgs. I hate being this skinny. Buying a new wardrobe would excite a lot of ladies, not me.”

An avid foodie, she’s hopeful further surgery to assist with the fit of  new ‘pearly whites’ (dentures) will mean she’ll never again have to swallow so much as a teaspoon of soup or powdered supplements. They’ve been her diet for the past seven months.

“When I went back for appointments at Waikato I’d take my pearly whites in a little plastic bag, shake them and say ‘I’ll be wearing them soon’. They all looked so doubtful. I asked when I’d be eating pizza, lamb shanks, McDonald’s. One of the surgeons shook his head . . . you don’t tell Pauleen she’s not right.” 

This is the woman whose determination is super charged. The dentures she’s worn since 1972 were swiftly back in place.

Earlier cancers 

The conversation returns to the possibility of the longed for new dentures which she sees as the passport to the normal meals she dreams of; lamb shanks top the menu. 

But there’s no guarantee she’ll be able to eat properly again.

Tongue cancer isn’t Pauleen’s first confrontation with a malignancy. There was a brush with cervical cancer in 1991 and three squamous cell carcinomas have been removed from her legs. Her non-medical opinion is they’re unrelated to her tongue troubles.

“I don’t like to put those [previous cancers] thoughts into my body. I’m a bit like an ostrich with my head in the sand. However I wonder in hindsight if I’d done something about my tongue when that pimple first appeared maybe I wouldn’t have had to go through what I’m going through.”

Jobs, sports

 Many reading this will know Pauleen Wilkinson. She’s been a Rotorua fixture since 1972. That’s when her late husband, Barry, was appointed branch manager of the engineering firm Andrews & Bevan.

“He was offered Launceston, Invercargill or Rotorua; we’d hardly been out of Nelson. We flew up here and liked the holiday feel.” 

 Since then Pauleen’s had “lots” of jobs. “You never pass up an opportunity. I’ve had wonderful projects with Telecom, Housing New Zealand and WINZ when the community services card came in.”  She’s worked in fashion boutiques and spent a couple of years as barmaid at the now-closed police canteen.

“At the interview I poured a stubbie over the table and down my leg, but I got the job.”’

Being the resident bouncer was part of her job description. “Those officers were big guys, I’m 5 foot 4 (1.63 metres). I was thinking ‘oh my god’, but I never had to kick anyone out. There was a lot of banter, a lot of fun.”
When she arrived in town she played badminton then golf. She was a course natural. “I got down to a five handicap, had four holes-in-one. Well, one was a Clayton’s; the pin was in the wrong hole.” 

She captained Springfield’s  Saturday ladies’ players, represented the club at Bay of Plenty level and was a national trialist.

“I gave it away because I couldn’t afford to keep it up.” 

Keeping busy

Pauleen’s a passionate reader. NZ Post must love her, she’s an inveterate letter writer and her family’s historian. “My ancestors on my mother’s side came to Marlborough in 1842, in 1856 on my father’s side.”

Take a look below at the whopping great list of her interests. To it add she’s a former Hospice, Red Cross, Friends of the Library volunteer and a past member of the Rotorua Writer’s Group.

She’s also her neighbourhood’s watchdog. When Pauleen sees something she considers needs doing she agitates until she gets action.   

Her latest crusade is to have something done about what, in a letter to the local newspaper’s editor, she clams is the “disgraceful” state of the gardens surrounding the Hemo Gorge sculpture. 

Pauleen Wilkinson is a busy woman; far too busy in her view to let tongue cancer get the better of her.

“Yes, I do feel I am cured. I tend to joke that this happened because I talked too much and this [tongue operation] is telling me to stop talking. But I can’t, I won’t. It is what it is.  I’m so lucky to be above the ground.”