Second time around

Zoleka Mandela (36) shares how, when she was diagnosed with breast cancer for a second time, she chose to have chemotherapy in a public setting rather than in a private room like she had the first time she was diagnosed, and the positive impact it has had on her life.

I was first diagnosed with stage one breast cancer on 15th March 2012. Although my particular cancer was a slow-growing one, it necessitated a mastectomy of my left breast, which harboured two tumours and a few cysts. I opted to have a bilateral mastectomy and immediate reconstruction, and underwent sixteen sessions of chemotherapy in six months.

I had been in remission for a period of three years and  subsequently had a healthy baby in-between, when my fiancé, Thierry, discovered an unfamiliar lump in my chest. Within five days of detecting the lump and three days before my 36th birthday this year, I was diagnosed with luminal B breast cancer; it was equally hormone-sensitive as the previous cancer. This was devastating news as we had just gotten the go-ahead from my medical oncologist to start trying for another baby. We had an appointment booked at a fertility clinic the next week.

Unlike the bilateral mastectomy I had after the first diagnosis, surgery to remove the 19g tumour was preceded by a PET/CT scan to establish whether the cancer had spread to my bones, lungs, brain or liver.

While Adriamycin aka the ‘Red Devil’, Phenergan, cyclophosphamide, Decadron and Kytril were administered to me the first time; Gemzar, Cortisone and Cisplatin were used the second time to treat the more aggressive cancer that was responsible for the 80% cell division rate just below my collarbone. I was also prescribed Emend prior to each chemotherapy treatment; I had also taken this back in 2012.

I was advised that I would need six cycles of chemotherapy to eradicate the disease. Subsequently, 33 sessions of radiation would be incorporated into my treatment plan, with the aim of reducing recurrence.

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Due to a three-week delay, as a result of a low white blood cell count, chemotherapy was permanently discontinued on 31st October this year. I had only completed seven sessions. My radiation has yet to commence. Once my white blood cell count is up, I will be able to start radiation.

As I anticipate the next chapter of my journey with breast cancer, I look back at all the dynamic individuals I have had the pleasure of meeting in the treatment room of the Donald Gordon Medical Centre. I’m taken back to the days of my first batch of chemo, whereby I opted for a private room and was admitted under a pseudonym, with the intention of concealing my identity.

Every Wednesday morning entailed a walk into my designated room for the day, followed by the nurses checking my blood and sugar, a visit from the Lancet staff to retrieve my blood sample, then a brief consultation with my oncologist before the chemo drugs were brought to the room and attached to the IV drip.

By the time treatment commenced, a tray with an assortment of sandwiches, muffins or pastries, hot and cold beverages would be placed in my room for my family and I to indulge in. My grandmother, Winnie, was often by my side during treatment.

The experience of receiving treatment in a public setting has given me the opportunity to interact with other cancer patients, who have been incredibly accommodating! This was the first time I was able to engage with individuals who knew exactly what I was going through and who would offer their support in a number of ways. Varying from prayers and quick smiles from across the room to warm hugs on particularly bad or difficult days and concerned looks when the drugs started to burn my veins. They would share their personal anecdotes on how they manage their side effects, or we would have personal discussions on whatever topic the nurses were chatting about with fellow patients, or talk about the news that was being broadcast on the television set in the corner of the treatment room.

For a change, I felt I played a more physical role in the process. Arriving at the centre and reporting to the receptionist so that she could mark down my name, heading to Lancet Laboratories for my bloods to be drawn, dashing to the centre’s café for a quick bite to eat, going back to the waiting room for the consultation with my doctor, heading to the accounts department to pay the consultation fee or any outstanding monies, then the final walk to the treatment room for chemo…just like all the other patients had done.

There were many laughs shared when the topic of side effects came up. Each drug has its own way of reminding you of its potency, and how it is working in your body to fight the cancer cells. I often joked that I resembled the female version of Sméagol, from Lord of the Rings.

Some of the side effects of the ‘Red Devil’ were hair loss, darkening and lifting of my nails, mouth sores, and oedema, whereas the combination of Gemzar and Cisplatin caused chills, high-toned hearing loss, fever, and peripheral neuropathy which was the cause of my sore feet.

The side effects of menopause, caused by treatment, were almost identical – infertility, hot flashes, vaginal dryness, together with skeletal pain. The skeletal pain was caused by a Neulastim injection. I had to take it on several occasions to boost my white blood cell count, both the first and second time of treatment.

The greatest lesson I have learned is that support is equally important as any treatment of a life-threatening disease. Cancer changed me for the better, and made me realise that my purpose lies in lending support to those who may not be as privileged as I am. The journey is never yours to walk alone.

My hope is that the numerous social media posts of my experience with the disease will help those battling cancer by giving them hope; inspire others to take the necessary steps to minimise their risks; and to remind everyone that there is still life after breast cancer…even the second time around. I also hope the refreshment distributions that the Zoleka Mandela Foundation has run at the oncology unit at Charlotte Maxeke Hospital, for over a year, has also somehow brought hope.

I am still alive and tremendously honoured to use my life to help educate, change and save the lives of those affected by the disease.

Written by Zoleka Mandela.