The dentist, neurologist and ear, nose and throat specialist concurred with the doctor telling Karin there was nothing wrong. But the pain persisted, and in February this year she was eventually diagnosed with stage-3 cancer of the head and neck. In the more than five months it took the medical fraternity to make an accurate diagnosis, the cancer had time to develop to the inoperable size it was once it was discovered, thereby complicating her treatment, decreasing her chance of survival and making Karin endure months of suffering, physical pain and emotional trauma.
Dreams and future collapse
Before this ordeal, Karin was a vibrant 50-year-old woman who found joy in cooking, mosaic, sewing and music. But lately she spends most of her time in bed trying to recover from eight weeks of aggressive radiation and chemotherapy that left her with third degree burns on her neck, tongue and throat. Weighing just 50kg, Karin barely resembles the beautiful, healthy-looking woman she was just a few months ago.
Karin lives in the trendy Johannesburg suburb of Melville with her wife and partner of many years, Riekie Greyling. They used to love travelling together and were hoping to visit Spain and the Far East before Karin’s diagnosis. ‘In a fraction of a second, all our dreams and our entire future collapsed into a dark pool of nothingness,’ said Karin.
What makes Karin’s situation even more tragic is the fact that it could have been avoided. Firstly, if the cancer was diagnosed when Karin first went to the doctor with a sore throat, the cancer might have been easier to treat, and her chances of survival would have been better. And secondly, her cancer was caused by the Human Papillomavirus ‘ the same virus responsible for most cervical cancers ‘ for which there was recently a vaccine released, although for the moment it is only recommended for girls from seven up to their early 20s.
Misdiagnosed by four doctors
It all started in mid-August last year when Karin started experiencing pain in her ear and throat. She went to the doctor for the first time at the beginning of September with this problem. Because she also clenches her jaw at night, the doctor told Karin she was suffering from stress and was given an anti-depressant that was also supposed to help for the pain.
But her condition worsened and Karin went back to the doctor who told her again that she doesn’t see anything wrong with her. Thinking that it might be an infection, Karin asked for a broad-spectrum antibiotic, which again, didn’t bring any relief.
Out of desperation Karin went to a dentist to have her mouth x-rayed to see if she didn’t have a hidden abscess. She even had cracked molar removed, hoping it may help, but the pain persisted and grew more severe.
Four months after first going to the doctor with a sore throat, Karin returned to the GP in early December, only to be told again that there was nothing wrong with her. By this time the pain was unbearable and Karin became deeply depressed. ‘Karin told the doctor she couldn’t sleep, had chronic and constant pain and was desperate to sort this out,’ told Riekie. ‘Again she was told there was nothing there and ‘for her own safety’ was admitted to hospital as a psychiatric patient. The psychiatrist told Karin that she had borderline personality disorder and over-medicated her with anti-psychotic drugs.’
In hospital an ear, nose and throat (ENT) specialist sent her for various scans, but still nothing showed up. From there they called in a neurologist who disagreed with the ENT specialist’s diagnoses that Karin has Trigeminal Neuralgia (a neuropathic disorder that causes severe pain in the face) ‘ it is also known as ‘The Suicide Disease’ as patients diagnosed with it often revert to suicide to escape the pain. She was put on new medication for this, but after three days showed no improvement. ‘In fact, by then the pain was worse than ever and the side-effects from the medication were horrendous,’ said Riekie. ‘We celebrated Karin’s 50th birthday in hospital.’
After being in hospital for a week, the ENT did a biopsy of Karin’s throat. She was discharged and never given the results of the biopsy.
‘By the middle of January there was still no improvement and we decided to get a second opinion. This new ENT specialist was told the history and asked for the results of the previous biopsy. They had never been given to Karin and after phoning the pathology laboratory the ENT told Karin that according to the results abnormal cells had been detected in her throat. The second ENT specialist asked for an emergency MRI scan and Karin was rushed to hospital for another biopsy which showed that she had an extremely aggressive malignant and virulent cancer of the head and neck,’ Riekie said.
Six agonising months of trying to convince the doctors that there was something wrong was over and a proper diagnosis was finally made, but the real fight was about to start. The tumour was too big and was therefore inoperable, and Karin faced a long road of chemo and radiation therapy. But first doctors removed all her teeth and a part of her jaw. ‘The cancer had already spread and the radiation would literally cause the whole area to decay,’ explains Riekie. Two weeks later she started her eight weeks of weekly chemo and daily radiation therapy.
Karin recently had her last chemo and radiation therapy and the fight is harder than ever. Side-effects from the treatment include deteriorating eyesight, hearing and balance, exhaustion, depression, muscle spasms, ulcers and burns caused by the radiation, her saliva glands and taste buds are destroyed, she is suffering memory loss, and she is unable to eat or swallow. And then there is the ‘pain, pain and more pain,’ she admits.
‘Even though the treatment is over, we still have to wait 12 weeks to know whether the treatment was successful or not. Either way, there is a long and difficult road ahead for us,’ said Riekie.
‘The prognosis for this type of cancer is never good. Karin first had a 72% chance of success, then it declined to 60%. And we don’t know where we are now. It is soul destroying’¦’
Her greatest challenge, says Karin, is to try and survive the cancer. ‘But there are days that I just don’t want to fight anymore and it’s a struggle to get up to go for treatment. At times I think that the treatment is much worse than the cancer itself, and I wonder if I didn’t make the wrong choice not to refuse treatment,’ Karin admits.
Karin’s cancer is also an ordeal for her partner, Riekie, who is a senior manager at one of the largest newspapers in Africa. ‘It is difficult to separate the stress and uncertainty from the situation at home from my work life. And then of course the enormous financial burden and responsibility that landed on my shoulders.’
Although Karin belongs to Riekie’s medical scheme, it only covers a part of the treatment. ‘But there are so many doctors, therapists, scans, tests and medication, it doesn’t come close. And there are still physiotherapy, logopaedics and possible reconstructive surgery to come, just to name a few.
‘We are so grateful for all the financial help and support that we’ve already received from friends and family. Every little bit helps.’
Karin message to others is to ‘live and love life to the fullest – every minute of every day. Because it can be taken away from you in a second.’
Karin and Riekie decided to start a Facebook page entitled ‘Karin, cancer and other creations’ to vent their emotions and share Karin’s cancer story with family and friends. To follow Karin’s progress, visit their facebook page on: http://www.facebook.com/#!/pages/Karin-Cancer-and-other-Creations/263375110400347