Navigating The Public Healthcare System With Cancer In The Eastern Cape: The Difficulties Encountered With Access To Treatment

My name is Rose Lovell. I am a 55-year-old woman living in a rural area, in a village called Tsweleni, which is about an hour’s drive from Port St Johns in the Eastern Cape. I was diagnosed with ‘high-grade’ upper tract urothelial cancer, post-surgery to remove a kidney and ureter. The treatment regimen prescribed was four cycles of a combination of the chemotherapy drugs, Cisplatin and Gemcitabine.

I was initially given a start date for treatment at Nelson Mandela Academic Hospital (NMAH) in Mthatha but, this had to be revised as NMAH didn’t have stock of Gemcitabine. This resulted in me having to go to Frere Hospital, in East London, which is about an 11-hour round trip from where I live.

The treatment regimen prescribed was as follows:

• Day 1: Cisplatin and Gemcitabine (requiring a two-night stay in hospital, as rehydration is necessary for the administration of Cisplatin, which takes six to eight hours to administer.)
• Day 8: Gemcitabine alone (30 minutes to administer)
• Day 15: Gemcitabine alone

It was to be 12 sessions of treatment in all.

My first of treatment, although long and tedious, went well. Unfortunately, I was not informed that I will be admitted to the ward for treatment for this session, so I arrived completely unprepared for an overnight stay, let alone two nights.  A friend had kindly driven me to East London and, after a quick trip to the supermarket to get me the necessary ablution supplies, drove back to the village without me, only having to make the trip, again, two days later to pick me up.  The petrol costs alone for this single treatment exceeded R3 000.

The staff at Frere Hospital, and the sisters in the Oncology Ward were friendly and empathetic (nothing like those I encountered at NMAH’s ENT ward post-surgery) and it made an enormous difference being presented with a bowl of warm water, to wash with – within a private curtained-off area in the ward. At NMAH, I was in the ENT ward where patients must help themselves to a basin and cold water from the sluice room and carry it down the corridor to the public toilet and wash, all together, with no privacy or dignity at all.

For treatment on day eight, I used the patient transport provided by the NMAH. I’m fortunate to have a friend in Mthatha who offered me a bed for the previous night and a lift to the Oncology Department at 3am to catch the bus, which was supposed to leave at 4am.  The patients, who were not as fortunate as I was, were all housed in an icy park-home, albeit provided with mattresses, beds and blankets from NMAH.  Staff members, in an adjoining room, had a heater for their comfort. The bus eventually arrived at 07:50 to take us to Frere Hospital. We arrived at around 12:30 and handed in our pink cards at the reception of the Oncology Department.  When my file was retrieved, and my name called to take it to the clinic for treatment, the sister on duty there told me that they had run out of Gemcitabine the day before.  There was no information available as to when their stocks would be replenished as the Eastern Cape Department of Health (ECDOH) had not paid the supplier.  Given that they have telephone numbers of all the patients, I was surprised by the lack of communication to us, who were scheduled for treatment that day, or at least to NMAH’s Oncology Department to alert those patients affected, to save us the trip. The patient transport bus departed at 14:30 and I was one of several patients who went back home having not received their scheduled treatment.  On enquiring, I was told that my regimen would probably be adjusted to a different drug if Frere Hospital hadn’t been resupplied by the next date of treatment.  This was revised for the next treatment day (day 15), but I was to call first to find out if they had the medication available.  It was a very long and fruitless exercise, with us arriving back in Mthatha at 20:30 – 17 hours of an absolute waste of time.

The result of all this meant that I must go back to day one of the treatment regimen (having skipped the treatment due for days eight and 15) and only be given the Cisplatin should Gemcitabine not be available.  I’m most concerned about the efficacy of this, given that both the medications prescribed, their dosage and the scheduling thereof is specific to the type of cancer I have, ‘high grade ‘which means that it has a good chance of recurring.

Getting a cancer diagnosis is a stressful thing to deal with in itself. Having treatment, only available, at a hospital six hours away from where you live, making the necessary travel arrangements (as well as plans for your children at home while you’re away) and to receive such a lack of consideration and callous disregard for your time, health and wellbeing is appalling.  It is indeed very difficult to access cancer treatment in the Eastern Cape, so much so that I totally understand why so many patients in this province abandon their treatment altogether.  I am only two sessions into my planned 12 sessions and the future is looking scary and uncertain.

Getting a cancer diagnosis is a scary thing, but there is help and support for all on this journey. CANSA, and Zodwa Sithole (Head of Advocacy at CANSA) in particular, has been so kind, helpful and supportive to me. She has listened to the problems I’ve experienced and, actually, done something about it, which I so appreciate. Words without action lead to despair but I have been able to rely on her for showing me the way forward and easing my anxiety. Thank you so much for all the time and effort to help!