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Louise’s story: a two-time survivor and how she learned to prioritise her own health

In 2004, Louise was diagnosed with breast cancer at the age of 34. One morning in the shower, she noticed a lump in her breast. Not knowing much about breast cancer at the time, she didn’t know much about self breast examinations, and at 34 years old she didn’t think that something so serious could be a possibility. She sort of ignored this development, especially knowing she was due to travel a few days to visit some family in the Netherlands together with her partner. Knowing Louise’s aunt was a retired nurse with more medical knowledge, her partner marched her over to get a second opinion, with her aunt advising her to see a doctor when she returns home.

Upon returning to South Africa, Louise went to the local radiology department and requested a mammogram. After some back and forth, with a lot of hesitation from the medical staff and a strong fight from Louise, they took her in and conducted a mammogram, with the result being that she needed an additional biopsy. A few weeks later – with the medical staff still acting cold and unfriendly for some reason – she was informed that she had breast cancer. Without any family history of cancer, this came as quite a surprise.

Living quite far from family at the time, Louise’s support structure at the beginning was limited to her partner. She had just started a new job two weeks prior to starting chemotherapy, so she hadn’t had much opportunity to build her working relationships into more personal ones yet. There were support groups, but she remembers feeling a bit like an outsider in one of those early groups. Most of the women she came in contact with, e.g. in the oncology department, were twice her age and already retired. They were sweet people, but she felt she couldn’t relate with them on a deeper level (and vice versa) because of her age, her career-oriented drive, or the fact that she wasn’t a mother. She got support from her family and friends over the phone, but she never really let them see the extent of what chemotherapy was doing to her.

Generally, I take charge of everything around me and I’m in control of what happens in my life. And for the first time, I sat there and went, ‘You know what? This is beyond me. I cannot fix this. I can’t do anything about this. I have to give my life over to the doctors.’

Treatment, surgeries and the process of recovery

Louise’s treatment began with chemotherapy to melt the tumour away with a chemo cocktail often referred to as ‘Red Devil’. (The name stems from the drug’s bright red colour.) After chemotherapy, she underwent a mastectomy. In addition to that, a number of lymph nodes were extracted to check for metastasis.

From the time she was diagnosed to when the cancer was gone, it was a span of seven months. But Louise makes it clear that when the cancer is gone and the mastectomy is done, the journey doesn’t stop there. “Everybody thinks life is back to normal because you look normal. Your hair is growing back, but from a surgery and reconstruction point of view, that took another two and a half years. And this is something I use when I help people and educate people and speak to families. Just because the hair has grown back does not mean that this journey is over.

Getting surgery is also not a simple thing that cures a person overnight, as Louise details a battle she faced post-surgery. She explains that after her surgery, which was quite invasive as they extracted lymph nodes in addition to the mastectomy, her natural reflex was to protect that sore area of her body. In fact, she overprotected that area to the extent that the muscles in her arm shortened from keeping it in place, which then resulted in the need for extra physiotherapy.

She learned as she went along, and she shares two main pieces of advice to those in a similar situation. The first is that you should ask questions – and don’t be scared to ask them. There’s so much information and it may be overwhelming to tell a patient everything at once, so Louise thinks clinicians and auxiliary staff may hold back for this reason. The second piece of advice is that it’s OK to ask for help. There is likely to be more than one surgery involved, and after each surgery, there are certain tasks you will need support with, as Louise describes her realisation that she needed help chopping vegetables post-surgery

Ask questions. Don’t be scared. They’re only doctors – they’re only human. But if you don’t ask, you’ll never get an answer.

Plot twist – gynaecological cancer arrives on the scene

“Trust your gut. Trust your body. If you think something’s wrong and you feel that something is not right, go and have it checked out.” This is something that Louise is always telling patients that she works with in the cancer community. Therefore, some time after her breast cancer journey was stable, she felt like something was wrong and decided to get it checked out by a gynaecologist. She had a pap smear done and was later informed that she had cervical cancer. She underwent a hysterectomy to address this and was glad in the end to have listened to her body’s warning signs.

Yes, I have had two cancers. Neither of them have killed me, so I doubt anything will.

Learnings, life as a survivor and finding a new passion

Throughout her survivorship journey, Louise repeats how she was a career-driven person and made sacrifices or compromises to remain at a level that she considered competitive in the corporate world. She had her sights set on taking over her boss’s job in five years because that is what was considered the next step in the corporate ladder. It took her a few years after having breast cancer to realise that this goal was no longer as appealing as it once was.

She made the decision to quit the corporate life and take six months to recuperate and figure out what her next step would be. Coincidentally, a position became available at the Breast Health Foundation and she was offered a role. And 13 years later, she’s the COO and loving her job! She still has that drive and motivation to work hard, and even sometimes work overtime like in the past, but for something she’s passionate about because she’s helping to make a difference in patients’ lives.

As a survivor herself and someone who is now supporting patients and fellow survivors, she has some tips for people who have a loved one going through a similar situation. The first is to be conscious of what you’re really saying to them. To say, “It’s OK, you’ll be fine,” is taking away hope from the person going through this difficult journey. It can sound presumptuous and dismissive because they don’t actually know what this journey is like from a first-hand perspective.

Her second piece of advice is to pay attention to how you listen and let them speak. Everyone has a unique story, journey, and way they deal with their situation, therefore you should treat the person in a way that you would want to be treated. And if they’re not telling you in words, pay attention to their body language and the environment they’ve created, which can tell you what they need from you. If you can respect that, it makes a huge difference in the psychosocial environment the person is in.

When asked what one message she would give to women in general about breast cancer, her main point goes for any health issue: look after yourself. She reiterates that if you feel that something isn’t right, follow your gut and have the concern addressed by a doctor. And if you are diagnosed with something serious like cancer, there’s always something positive that can be found in a situation. In her case, her cancer journey led her to her new career and she’s met some of the most phenomenal women (through the Breast Health Foundation) that she never would have met otherwise.

I think I'm quite privileged, in a way, that I experienced breast cancer because by going through that experience, it's changed my life so much for the better. And I don't think I would have made these changes had I not been diagnosed.

Watch the entire Video with Louise here

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