Government Healthcare Nightmare
The wait for answers, treatment, and healing continues…
I recently travelled to Steve Biko Academic Hospital in Tshwane for what was supposed to be the start of chemotherapy treatment.
Upon arrival, they wouldn’t even help me, saying that I do not have an appointment, and that I should make an appointment and come back another time. I had to wade through my texts and calls to show them the dates and reminders they sent me, and speak to a superior for them to just look on their system to see that yes, I do indeed have an appointment to be there. Once they finally confirmed that I did indeed have an appointment, and let me sit down and wait to be seen by an oncologist, I was confused because I was supposed to be getting treatment already, not wait for another consultation.
Instead of starting treatment, the only reason they really wanted me to go in was to physically hand them a piece of paper with the results of the biopsy that I had done in Polokwane—why couldn’t the Polokwane Provincial Hospital just email the results to Steve Biko? Why did I have to travel all the way to Tshwane and physically hand them a piece of paper, of which they already knew the results due to the calls that happened between the doctors of Polokwane and Steve Biko—calls that I overheard; calls that resulted in the arrangement of treatment.
I was told that I would be receiving chemotherapy treatment: The purpose of the trip was to get treatment, instead, they only wanted the physical handover of a single piece of paper, and that wasted the entire day, from arriving at Polokwane Provincial Hospital at 4,30 a.m.—taking patient transport to Steve Biko, battling to prove that I am in fact scheduled to be there, waiting until after 4 p.m. to be seen, being told that I won’t get treatment now, they just want the biopsy results, only getting picked up again at 7 p.m., and only arriving home again at around 10 p.m. for what could’ve been an email—an entire day wasted for what has already been discussed and what could’ve been an email. What the fuck? How is government healthcare this pathetic?
They would not give me treatment because the PET CT scan happened “too long ago.” Now I’m thinking, WHAT THE FUCK? I did everything according to their scheduled dates. I went for the scan as scheduled, returned as scheduled, went for the biopsy as scheduled, returned as scheduled. I’m just going by the appointment dates provided to me. It’s their fault that things are taking so long. And if I get booked for another scan a month or two from now, and they see me a month or two again after that, is it again going to be ‘too long’ ago for accurate staging?
I was told that I now have Stage 4 cancer and they cannot treat it with chemotherapy. I need to be admitted to the hospital for further treatment—but they do not have any beds available at this time. I went for the scan in April, now they assume ‘the disease’ progressed from stage 2 to stage 4 simply due to the passage of time–without any further testing, and they want to go ahead with stage 4 treatment, except that they can’t because there’s no space for me in the hospital.
So now what? What happens next?
My oncologist will discuss my case with her superiors and they will decide what to do next, and they will let me know at my next appointment when beds may be available, though I’m told that I may not see the same oncologist again as files are shuffled between all staff. They want me to go back again on the 10th of September. So, more waiting…
This whole situation—dealing with government healthcare—has been a complete fucking nightmare. It’s been nearly a year since I’ve tried getting answers and treatment. Things that can be done in a day are stretched out over multiple months. Things that can be a quick call or an email are turned into day-long cross-province appointments after month-long waits. And when I complain about it or question the process, they blame me for missing a phone call, or for moving away and missing a checkup three years ago because I couldn’t get back there, and only went back after symptoms reappeared—as if all of this is my fault.
Then there’s also the fact that they have been repeatedly made aware of my Autism and ADHD; repeatedly told to use txt or email to contact me or to phone my mother or father instead as I WILL miss most (if not all) of their phone calls. But the recent delays in getting treatment are all somehow my fault? WHAT THE FUCK?!
They complained because I did not go back for checkups—I moved away, I informed them that I moved away. They complained that for my most recent visit—that I should’ve been there on the 12th, when in reality they phoned my mother and booked me an appointment for the 19th, which I attended.
They asked me if I’m serious—if I really want help. WHAT THE FUCK?!
I’ve been battling-struggling to get treatment since LAST YEAR. It took months to get back in at Steve Biko. Appointments, scans, tests, and surgeries were scheduled with months in-between them. Simple things that could’ve been an email are turned into day-long, anxiety-inducing, overwhelming waiting with no further answers, treatment, or progress—just delay after delay, after delay.
Then when it comes to what they said vs. what actually happened, there is a complete disconnect. I’ve made a little table with some things that come to mind…
What they said:
They labeled me as ‘Patient lost to follow-up’.
What actually happened:
I was treated before, told I was clean, went for checkups as scheduled, told I was still clean, then I moved away, told them that I’m moving away, that I can no longer attend checkups at Steve Biko, and I requested a file transfer to Polokwane Provincial Hospital for future checkups.
What they said:
They blame me for their own delays.
What actually happened:
It’s somehow my fault that many months have passed since my last CT scan, meanwhile I’ve been attending appointments as scheduled by them.
What they said:
For transport from Polokwane to Steve Biko, I was told to “be here at 4:30 a.m., the Patient Transport bus leaves at 5 a.m.”
What actually happened:
I was there at 4:30, no one else was there. The bus only showed up at 5:30 and only left at 5:45.
What they said:
Patients from Limpopo coming via patient transport will be helped first at Steve Biko. They will receive treatment within an hour of arriving.
What actually happened:
It’s first-come, first-served no matter where you come from. I did not receive treatment, sat and waited all day, and was only seen after 4 p.m.
What they said:
Transport usually returns around noon, or before noon.
What actually happened:
Since I was only seen after 4 p.m., and transport only picked me up around 7 p.m., I only got back to Polokwane after 9 p.m.
What they said:
“You will receive treatment.”
What actually happened:
“You’re not getting treatment today.”
What they said:
“You have stage 4 lymphoma.”
What actually happened:
Initial pre-treatment PET Scan showed stage 2, after the last scan showing that I went into remission (all clear), there were no further scans done since, so simply by the passage of time, they assume that it’s now at stage 4 and they won’t give me stage 2 treatment anymore. They can’t give me stage 4 treatment either as that requires a hospital stay and there aren’t any open beds in the hospital. And even if there were beds available, their proposed treatment only has a 34% success rate. To beat cancer again, I would need more advanced treatment (Immunotherapy), which they don’t provide.
Patient Transport Nightmare
My reason for taking Government Patient Transport was to save on the expenses of fuel, tolls, wear and tear on my car which would cost over ZAR 1-2k per trip—or around R3k if I stay over at a guest house rather than driving there and back on the same day. I didn’t have that kind of money now anyway so my only option was to take patient transport—provided for free—but what a fucking nightmare that was!
Throughout the entire trip, they played various radio stations, loudly—I’m not sure if you’ve ever heard a South African Minibus taxi travel by? They’re always blasting loud music or radio to a deafening degree. The same applies to government healthcare patient transport. My noise-cancelling headphones weren’t even able to drown out the noise of loud music and loud conversations blasting in my ears. They were asked multiple times to please turn down or switch off the radio, all they did was switch it off briefly, then turn it back on, or simply changing the station, even blasting evangelical sermons at one point. As a sensory-sensitive autistic person, this constant blaring radio, so loud that my noise-cancelling headphones didn’t even block it out, was the worst road trip I’ve ever been on my entire life. I WILL NOT DO IT AGAIN! If I cannot afford to travel privately, I simply won’t go, as no autism-friendly accommodation were made. I literally cannot deal with it.
What should’ve been a day of finally getting treatment turned into a nightmare of sensory overload, anxiety, overwhelm, receiving blame, and further delays.
I honestly don’t know what to do anymore. I do not have any other options as I simply cannot afford private care. Government healthcare is my only hope, but I am fed up, angry, and disappointed. I’m tired of waiting. I’m tired of being blamed for their own mismanagement, miscommunications, and delays.
My mom told me she would not put her life in the hands of these people—that further treatment will be life-threatening as treating stage 4, if by stem cell transplant, requires them to completely kill my immune system, in a hospital with staff miscommunication, dirty walls and floors, and patient neglect. She’s urging me to try alternatives and to continue to seek funding for private care.
I don’t know what to do.
Honestly, the mere thought of spending multiple days alone in a hospital being treated by these people who make me feel like the cancer recurrence and advancement is my fault, putting my life in their hands for treatment that could kill me rather than heal me—I’m not so keen.
But at the same time, I trust medical science, I need this taken care of, and I’m willing to do what must be done. But even though I’m willing, there is no space in the hospital for me to be admitted—it’s full, and they do not even provide the treatment that I actually need.
So now what?
One thing is certain though—even when beds do become available, I will not agree to advanced stage treatment if they don’t actually confirm that I am indeed at an advanced stage. Simply assuming I’m stage 4 due to the passage of time, without doing any further testing to scientifically confirm it is extremely unprofessional and dangerous. I will also not agree to a treatment that only has a 34% success rate. Rather than heal me, they may actually kill me. They do not provide the treatment I need.
I’m willing to do what needs to be done.
I will go back there again on September 10th, in my own car this time—hopefully, as scheduled by them—when they may have beds available for inpatient care again, and after they’ve discussed my case. I will listen to what they have to say, but before I sign a paper to accept treatment, I will demand proper testing again—proper re-staging that should result in receiving the correct treatment—which will of course once again further delay the process, but what else can I do? And I will not agree to any treatment that only has a 34% success rate. I’m not willing to let them play with my life based on assumptions. I wish I could change my care provider to one that provides Immunotherapy and T-Cell Therapy but I can’t so what should I do? I wish I could just win the fucking lottery and get private care at a facility where all tests can be done in a single day and when the correct treatment can start within a week or two. This government healthcare service is a fucking nightmare.
I plan to return to Steve Biko again in September as scheduled, but for now, all I can do is wait, as before, hoping that I don’t die in the meantime, and desperately trying to receive care through other means, seeking alternatives or sponsorship for private care. So, the wait continues, once again.
If you’re able to provide financial assistance, please donate. or to discuss alternative ways—Like, maybe you’re a generous private oncologist who can help me? Please reach out!
Thanks for all the support and positivity via social media, and thanks for following my life’s journey.
