Joanna Naicker – My bowel cancer story

I had always suffered from bloating and irregular bowel movements but put it down to too much of the wrong foods. I mean all women get bloated right? Around the end of 2018 I started to suffer from stomach cramps, which became agonising pains after every meal and snack, and eventually, I could not even tolerate drinking water. It got so bad that I was visiting the toilet up to fifteen times per day. I had severe fatigue. I would collect my daughter after work, do all my mum duties and literally collapse on my bed. When I noticed that I started getting regular haemorrhoids, I visited the local GP, in spite of how embarrassed I felt. She prescribed Senokot which helps relieve constipation.

I kept going back to the doctor as my symptoms worsened. I was referred to a gynaecologist twice where I was told to take the contraceptive pill for three months, and thereafter I had a laparoscopy, all to no avail! Eventually, on one of my many visits, a trainee GP finally took a stool sample for testing. When they received the test results, I was immediately referred for an urgent colonoscopy and CT scan. Well, I was turned away from my colonoscopy because I had recently undergone a laparoscopy, and they felt it was too soon! I had the CT scan but the waiting period for the results was six weeks. Long story short, in August 2020 I was diagnosed with stage 4 bowel cancer, with lesions in the liver (by that time the cancer spread from the primary tumour in the bowel). I had a 5cm tumour blocking my bowel movements. Go figure, it was more than constipation and bad periods!

By the time I was diagnosed (after almost one year of being misdiagnosed!), I had left the UK for Johannesburg and was given the results over the phone. I felt like my mind had left my body, and it was the most surreal day of my life. Despite advocating for myself for so long, I never considered cancer. So, what next? My husband and I met with his family GP, Dr Neville Moodley, and he referred us to a surgeon, Dr Reshma Maharaj. She did a sigmoidoscopy and biopsy and confirmed that it was metastatic cancer. She then performed surgery to remove the primary tumour with safe margins (15cm of bowel removed). Miraculously, the rest of my bowel was clear and very healthy. Finally, some good news! Our GP also referred us to Dr Adam Nosworthy, who became my oncologist, and he still is to this day. I was to have six months of aggressive chemotherapy (FOLFOX) with an excellent clinical response.

My mum, Charlie, jumped on a plane to South Africa as soon as she heard of the cancer. We picked her up on 19 August, 2019 from O. R. Tambo airport, then went to lunch together. It was so lovely to have mum over and for her to finally see some of South Africa, despite the fact we had a major operation looming. I had my operation on 22 August and she was by my side every step of the way. It doesn’t matter how old you are, having your mum there is priceless! After a week-long stay in hospital, I was back home and we were able to spend some lovely, quality time together, in between me moaning about DVT socks and cold sweats! Mum stayed with us for three weeks, then flew back to the UK

After about a week of being back home, mum went to her GP as she still hadn’t had a bowel movement and he said it was constipation from the flight. A few days later she went back to the GP, and again he said there was nothing he could do, telling her that if it got any worse, she should go to A & E (Accident & Emergency). A few more days passed before my step-dad called the ambulance, and mum was rushed to hospital. She had an emergency operation to remove a large part of her bowel/colon and woke up to an ileostomy bag attached. A large tumour had grown on her right ovary, which had crushed and blocked her bowel. She had a biopsy and soon enough it was confirmed that she had stage four bowel cancer that had spread through her lymph nodes, peritoneum, to her ovary, liver, and lungs. She was told it was incurable.

When we got the phone call, we were just stunned. I couldn’t even fathom that this was happening. It was surreal. What are the chances of both mother and daughter being diagnosed within such a short period! Initially she was given a very vague time frame, two or three months to two years. As always, my mum was so calm and pragmatic. The oncologist suggested that she should try chemotherapy to slow down the cancer from spreading, and she agreed to do a trial chemotherapy too. Sadly, mum picked up an infection during her operation which set her back a few weeks, and she had to go back to the hospital for two weeks to recover. As soon as she was strong enough and back home, she visited her oncologist where her chemo start date was set. We were both in it together. We would call each other and talk about our side effects, and we motivated each other to stay strong and to keep pushing ourselves. I could not have done it without her love and encouragement. Mum literally had every side effect and I felt so bad for her. She was so brave, but it was too much for her. Mike, her husband (my step-dad), was caring for her full time, for which we are all eternally grateful. She spent more time in hospital and decided to pause her chemotherapy sessions. The question that one asks is, ‘What is the point of chemotherapy if you have no quality of life?’ It was a difficult decision, but really, she had no choice… her body could not cope with the chemotherapy.

After a break and another consultation with her oncologist, it was suggested that she should try to complete four more cycles, to give them a benchmark of how well the treatment was working. They wanted to see whether it was slowing the cancer from spreading. At the end of March, on a Thursday, mum gave it her all and went for her third cycle of chemotherapy. Her side effects were horrific and she was taken back to the hospital. Her pain was unbearable and she was to remain in hospital while they controlled her pain. After about ten days, mum’s health was clearly declining and we could see her struggling in pain, but she never complained. She was so brave. In the end, it was decided by the health professionals that mum would move to a hospice. She left the hospital after two weeks, not having had any visitors due to COVID-19. It was heartbreaking that Mike could not visit her, nor my sisters. I, unfortunately, could not travel regardless of COVID-19, due to my chemotherapy treatment.

In all of this, The Lindsey Lodge hospice was amazing. Mum felt at peace there, and she felt safe knowing that the health workers could continue to aid her with her pain relief. Mike would visit her and talk to her through the window. Heartbreakingly, mum’s health declined further and further; she really struggled to talk, so I did most of the talking during our calls. She decided to have one night at her beloved home on Thursday, 9 April and got to enjoy being with her family and pets. I did a video call to her but she was unable to talk, and she was in and out of sleep. She returned to the hospice on Good Friday. On the Saturday morning my sister, Kim, called from the hospice as the consultant told them that mum would pass away soon and that we should say our goodbyes. I video called her and as she closed her eyes, I told her that I loved her and that she could be at peace now with Grandma. I did a video call again a little later, but my mum’s spirit was already gone. I spoke briefly, despite it being devastating to see my beautiful mother that way. Kim called at about 15:35 to say she had passed away. She fought so bravely for seven months and gave it her all. Life will never be the same without her, and even now, I cannot accept that she has gone.

My chemotherapy ended in April 2020. Tragically, mum died just before my final round, and I was in what appeared to be remission, but in August my routine CT and MRI scans revealed some lesions had reappeared in my liver. My oncologist referred me to Professor Jose Ramos, and he removed 70% of my liver, as well as my gall bladder. All the cancer was successfully removed. It was a huge surgery, and I could not help but feel angry that this could have been avoided if I had been listened to earlier. Once the cancer cells have travelled through your lymphatic system, there is a greater chance of recurrence. Nevertheless, I have always insisted that each case is unique, and despite the label of ‘stage 4’, I have tried to remain as positive as possible. Between August 2020 and October 2021, I was in remission. I became a vegan, reduced processed and sugary foods, and exercised regularly; I was in a good place. I trundled off to have my routine scans done at the end of October 2021. Later that week, my oncologist explained that I had a 3cm lesion on the remaining liver and we needed to operate ASAP! I did not have much time to think, and in October 2021, Professor Ramos removed a further 10% of my liver, including lots of scar tissue, and all the cancer – AGAIN! Both liver surgeries involved post-surgical infections that prolonged my recovery, but I am standing to tell the tale, which is all that matters! I am due to start some preventative chemotherapy so that we do not have a repeat recurrence. The chemotherapy regime is slightly different, and I will have an IV thrice a week followed by two weeks of tablets. Most importantly, it will zap any sneaky dormant cells.

Despite all these physical treatments, I cannot convey the mental trauma caused by cancer. Treatments may end, but the looming shadow of cancer is always there. The pain it has caused my family and the anxiety of it returning is very real. However, by telling my story and others’, as well as educating others to be their own health advocate, I find some peace. I would say that in many ways, as cliched as it sounds, I have learnt to accept life on life’s terms. I wish I knew then what I know now, but I cannot change my narrative. Learning to stay in the present and not allowing my mind to wander off into dark thoughts is so important. I would even go as far as to say I am grateful, as many may not have had the options I had.

Therefore, early detection is so important and saves lives because, if found early, bowel cancer is very treatable. If you have any of the following symptoms, please get checked and do not stop until you are listened to.

Symptoms of bowel cancer –

• Unexplained change in bowel movements (constipation or diarrhoea)
• Blood in your poo / faeces
• Excessive tiredness or fatigue
• Abdominal pain or a lump in your stomach
• Unexplained weight loss

I also have a blog where you can read about my story in further detail, as well as other cancer stories and lots of links to useful charities. Please visit www.jojosjourney. com to learn more!

Remember, be your own health advocate and listen to your instincts. You know your body better than anyone!

Joanna Naicker is a stage 4 bowel cancer survivor