'My father, Barnett Fine, passed away from a cancer that, if he had been screened for it earlier, would have been curable.' Read Hanna Neuhaus's story about her father's suffering and lack of proper treatment, as told in her own words.
My father was diagnosed with throat cancer in December 2011. It only took another 7 months before he had passed away from a cancer that if he had gotten screened for earlier - would have been curable.
My dad knew he hadn’t taken care of his health, as he should have. A few months before he died, my father, too weak to stand said to me, “maybe this is what I deserve”. “No”, I told him, “nobody deserves this treatment Dad”. Yes my dad’s cancer was diagnosed late but in my mind my father didn’t die from cancer; he died thanks to a gross neglect of basic human rights on the part of our Provincial Government.
I left my job to do what I could for him. My father’s journey soon became my journey.
I had to intervene at every hospital visit. Scheduled hospital appointments were withdrawn for no apparent reason and there were cases where we were arrived only to be told that no appointments were available. We were simply ignored or told to return months later. If there is one thing that cancer patients never have enough of, it’s time.
At one stage my father wasn’t able to swallow, not even liquids. He had lost as much as 25kg by this time. The doctor at the hospital sent him home with painkillers usually given for headaches. He became a walking skeleton. The sad thing is that if he’d been given the correct treatment early after his diagnosis it’s unlikely he would have had this problem.
Months later, the doctors wanted him to have a CAT SCAN to establish the amount of treatment required to ease his pain and make sure he could have a better quality of life for the time he had left.
They couldn’t start the radiation treatment that would provide him with the relief he so desperately needed because the hospital CAT SCAN machine had yet to be services and wasn’t in working order. We weren’t even sure that if he had the scan that he would be given the treatment. Of the four available machines in Charlotte Maxeke Hospital, the main cancer treatment facility for Johannesburg, its surrounding areas and 2 other provinces, only one was operational at the time.
It was only after my appearance on TV that the health department responded. They announced that they would fix the machines, but again this came with a catch. These machines have a waiting list of 6 months and more. My dad didn’t have 6 months! He was now bedridden most of the time because he couldn’t eat, was coughing up blood and in a huge amount of pain.
My father was then told he needed 30 radiation treatments. These radiation treatments would ease the pain and help him swallow. The hospital could only give him 10. In the end my father ended up receiving only 5 treatments all of which were continuously interrupted because the machine kept breaking down.
People are scared to talk about it as they may be denied treatment - the doctors told me that they weren’t happy about being on the news. Some of the doctors and nurses want to help, but clearly can’t as they don’t have the equipment, resources or manpower, I can only imagine how frustrating it is for them!
Scared to talk
Patients at the hospital were scared to talk about the problems they were experiencing because they felt they might be denied what little treatment they were getting
All in all, my father suffered for 7 months and that’s with Campaigning for Cancer intervening and offering help. Without this attention, he would’ve past away much sooner. After the radiation, he felt a lot better but could feel it wasn’t lasting, he asked for more radiation but they said no- absolutely not.
The Matakwana Hospital in Nelspruit is where he went to get the medication prescribed by the doctor at Charlotte Maxeke Hospital. Medicine that would take away the pain he was experiencing, but they were often out of supply. He often got to the hospital on a wheelbarrow, walked and caught lifts, only to be greeted by “out of stock” signs.
Eventually my brother began going to the hospital in Hazyview to try to get him some medicine, as my dad was just too weak at this stage. He literally begged for medication.
Over the long weekend in September, my dad couldn’t struggle anymore. He was so ill and weak that he needed to be admitted to hospital. I remember his eyes being dull, it was clear that the struggles and pain that my dad and been forced to endure by a health system that failed him had finally taken its toll.
Once he got to the hospital in Nelspruit, there was no doctor and nobody would answer the telephone. I had the nurses’ number and had to call her to receive SMS updates. On their official report, it states that a doctor saw him but this isn’t true. The day before he died, they moved him into their public ward, where my brother sat outside at the window looking in because he had been told to leave.
Every time my dad needed something he snuck into the ward to tend to him. No nurses saw to my dad and there was no medication - this for someone who was meant to have pain medication every four hours. The abscess on his back which wasn’t tended to, which meant he wasn’t able to lie down.
My dad passed away sitting up.
All I wanted was for my dad to get the treatment that he was entitled to and to make sure that the little time he had left with us was pain-free and he was comfortable.
That’s not being unreasonable, is it?
Story told by Hanna Neuhaus.
- (Campaigning for Cancer press release, November 2012)
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