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Living with two of the most life-threatening conditions, i.e. HIV and cancer, can break the best of us, but you must never give up. It’s not about the cards you’re dealt, but how well you play. No one can fight this battle for you but you.
I have had my ups and downs, but my survival story has instilled in me a passion to make the best of my life and help others to overcome this illness as well, in whatever little way I can.
This is my personal journey through the turmoil of cancer and HIV, with the hope that it can inspire, motivate, or comfort others through their cancer struggle.
The Early Signs of Cancer
I discovered a lump very close to the surface in my right breast, (1) around the middle of September 2018. I did not have any other symptoms. The lump was not painful. I noticed the lump getting bigger rapidly by early October 2018.
The Cancer Diagnosis
I consulted my GP by middle October and was sent for a mammogram. The radiologist was concerned about the lump and ordered a biopsy.
Because my health insurance at that time was not paying for the biopsy, I only had the biopsy at the end of October.
I was informed by my GP on the 26th of October that I tested positive for triple-negative breast cancer.
My Reaction to the Cancer Diagnosis
The doctor explained that it was a very aggressive type of cancer, the statistics around this type of cancer, and that the treatment needed to commence immediately. (2)
My major concern was that I am also HIV positive, so this diagnosis was a blow to me, since I knew that the chemotherapy was likely to wipe out my immune system.
I have been on antiretroviral drugs (ARVs) since February 2016 and had a CD4 count of around 750 and an undetectable viral load at that time. I was devastated, to say the least.
There is no history of cancer in our family and as a result, I opted not to undergo gene testing. I can only assume that “arrogance” led to my cancer diagnosis.
At the time of diagnosis, I was not eating healthy, overweight, not very active, a smoker, and also working in a highly stressful environment.
The Treatment Routine
I went for a sentinel node biopsy in November, which was negative. This was good news and I was referred to an oncologist.
The treatment regime was TAC (docetaxel, doxorubicin, cyclophosphamide), once every 21 days for 6 cycles. (3)
- The first cycle went well with no immediate effects. I also received a Neulasta (pegfilgrastim) injection the day after chemotherapy to assist my immune system. (4) It was after 3 days that I developed a number of adverse effects. My body temperature dropped below 35°C, accompanied by body pains, headaches, a general feeling of malaise, and then I started losing hair around a week after the first cycle.
- The second cycle went pretty much the same as the first.
- By the third cycle, I experienced weakness in my thigh muscles and could not stand for more than about 10 minutes at a time. I mentioned this to my oncologist. He was of the opinion that it might be because of the HIV and ARVs I was taking. I was not given any additional supplements and was advised to take pain killers.
- By the fourth cycle, I could not stay awake during the 4 hours it took to administer the TAC, and I could only walk with assistance.
- A few days later, I was admitted to the hospital due to severe weakness and inability to walk. During my admission, it was discovered that my potassium and magnesium levels were completely depleted, and I had a urinary tract infection. I received heavy doses of antibiotics, potassium, and magnesium and was also prescribed supplements to continue taking.
- At this time, I opted to change to the oncologist who treated me during my admission. This oncologist seemed better equipped to treat me holistically and not just focused on cancer.
- I completed my last two cycles of TAC with the new oncologist but at a reduced dosage. The dosage was adjusted after a CT scan and a mammogram clearly showed that the tumor could no longer be detected. I did have a V-marker placed before the first TAC cycle, so it was easier to detect the results.
- I had a lumpectomy 1 month after completing cycle 6, which was followed by 15 sessions of daily double-dose radiation.
The Biggest Source of Stress
My biggest stress factor was that I am HIV positive, and I knew that chemotherapy was going to affect my immune system.
The Neulasta injected pushed my CD4 count up to 900, which was great, but I knew it would “bomb out” completely once I stopped taking the Neulasta.
I experienced difficulties from cycle 3 onwards, which resulted in an admission to the hospital as explained above, this added to my general stress level.
The Challenging Part of Getting Better
I lost all my hair and went out proudly without covering my head, so this was not a challenge to me, although I thought it would be initially. The challenge with that was mainly dealing with other peoples’ reactions.
My biggest challenge was difficulty swallowing and the depletion of potassium and magnesium, which resulted in losing the use of my legs completely by cycle 4.
Admission to the hospital was scary. I was very weak and I looked terrible. It was very challenging to require assistance even with the smallest of tasks at hand. As mentioned above, I am HIV positive, and so the fear of infection was very real, even though I was taking the Neulasta injection.
My Biggest Strength and Motivation
I had been in and around the health care industry for 34 years at the time of diagnosis, so I had a lot of knowledge about what to expect.
There is unfortunately not a lot of information available on HIV-positive patients and the effects of chemotherapy, nor statistics for triple-negative breast cancer in HIV-positive patients.
My journey was not long, but it was grueling. I had a complete response to chemotherapy by cycle 4, and although I was admitted at the time of getting this news, very weak and insecure, this pushed me to complete treatment because the end was in sight.
Also, the fact that my grandchildren were present when the ambulance fetched me at home, and they were crying gave me motivation.
I made myself a promise on the way to the hospital that this will not be the last picture I have in my mind of my grandchildren. It kept me going and fighting very hard.
They were affected badly when I lost my hair, and I made a promise to them that my hair will grow again. I planned to live up to that promise, and I did, despite all the odds.
My Appeal to Other Cancer Patients
- Eat healthy, exercise regularly, and manage personal or professional stress to stay in the best of health.
- Never to take a lump or any sign of ill health for granted.
- Take nutritional supplements after consulting your doctor to boost your immunity.
We may not be completely cancer-free, but we can ensure that our bodies are strong enough to handle the treatment for successful outcomes.
The Lessons I Learnt
Here are a few tips to make your cancer struggle less difficult, and more rewarding:
- Don’t be hard on yourself. It is okay to not feel well during treatment and to require assistance with even the smallest tasks.
- Ensure that you have somebody you can talk to, who will just listen and be there for you.
- Don’t try to undergo chemotherapy while living alone, at least make sure that you have a neighbor, friend, or relative who can check in on you regularly.
- Do not trust all the information you find online. A lot of the information online may be outdated and/or a person’s opinion. Each of us is unique and may not have the same response.
- Try by all means to celebrate the milestones, never mind how small they may be.
- Lastly, do not let the fear of recurrence spoil the rest of your life.