My Journey By Denise Ejoh (PhD)
As a result of a diagnosis of METASTATIC BREAST CANCER in the brain, the challenges and a lack of honest discussions and literature were central to the founding of the Cormode Cancer Foundation (CCF). Cormode is my mother’s maiden name, and both my grandmother’s and my mother died of cancer, which was central to my vision. It has since underlined the need for change, as cancer is a disease that is still a global burden 50 years later. CCF was registered and fully documented in Nigeria in 2019. As the CEO, over the last seven years, I have undergone three brain surgeries and had gamma knife surgery (using radiotherapy) to remove seven additional tumours and different treatment regimens to shrink four to five tumours, including chemotherapy. This lived experience is the focal point of the vision.
Cancer is discussed as the C word. Everyone’s biggest nightmare. Before being told the word is a possible diagnostic option, you are hopeful, pretending you did not see the signs, and trying to rationalize, explain, review, and GOOGLE everything online. It does not help because it is in Medical speak—JARGONS, to be precise. Our first reactions are we become numb, blank out, and no longer listening or hearing the people around us. The voices in our heads are confused, and our minds are racing at 200 kmph, to name a few.
Since I started living with cancer and became a patient advocate (2016), understanding and navigating through the treatment and changes to life long-term is crucial. Founding CCF became important for my mental health because it created an enabling platform that ensures the impact of social change in Nigeria is central to advocacy nationally and across all arms of government. This now drives my passion to be there for those needing support.
The cancer journey is expected to take a cancer patient through a very challenging roller coaster, which, in my view, is the main reason why it is a dreaded disease globally. Experiences on the journey are expected to be standard; however, that is not the case.
My journey begins. I had brain surgery on 11/9/2016. 9/9/2016 was my youngest child’s 12th birthday; you can imagine what must have been going through my head. I was not scared and got my children to think of it was normal, as they were familiar with me having surgeries. In the morning, I was woken up at 6 a.m. to get ready. I was going down to the operating theatre at 11 on the list. The consent form has a long list of implications – in bold death. The instructions were: No more food, drink, etc. I had a shower, did all the necessary tests and scans for the neurosurgeon, and the heart monitors were connected in a very sterile environment due to the nature of the surgery. I just spent my time talking to my family. I went down at 11 a.m., went into surgery around lunchtime, and came out at about 7–8 p.m. All I remember is that I was very hungry. My brother was sitting in the ward waiting for me. I had a terrible headache and an extremely tight bandage around my head.
I knew something was wrong but did not associate headaches with cancer. I didn’t know why until I was told I had three months to live. I am fortunate to be a dual national. I boarded a flight 48 hours later and presented myself to my doctors, who referred me to A&E. The doctor tried to give me painkillers and send me home. Still, because I already knew from the scan results received in Nigeria, which did not make sense, only giving me a list of what I could have, I insisted on a scan. That was the beginning of my access to healthcare. I had prayed and accepted that if I lived through this, it had to be for a reason; if not, I did not want the pain and sadness it would bring to me and my family. Writing or talking about this aspect still brings tears my eyes, even though I am perceived to be strong. No comment, just trusting God: he will not leave or forsake me on this journey.
One down—now, what does the biopsy have to say? The wait begins. Then, an appointment was booked to give me the results of my biopsy. The appointment was held in the palliative suites of the hospital, and I recall the specialist nurse sitting in front of me. The next thing I heard was we are sorry, your biopsy has returned, and you have cancer. My oldest daughter burst into tears, and my world changed in one day, an hour, and minute. My foster daughter was also there and was a consoler for my daughter. She informed me it was metastatic breast cancer, meaning it had moved. As a family, we had a long road to go as I did not have a lump in my breast, but multiple tumours already confirmed in the brain.
I was then referred to two different oncology teams – breast and brain. I was approved to have Gama knife surgery immediately to remove the three other tumours found on the scan. The tumour cut was at the craniology sight, which showed I still had active cancer cells. The consultants were awesome. God allowed me to get the best consultants in the main specialist hospital, funding my treatment privately. This was the longest four months of my life. I could not see at a point, was not stable, had lots of limitations, but had lots of support from direct family and friends. 2017 was the start of my chemotherapy journey, and we have since been on the journey, going around the loop.
Then, the treatment plan is explained speedily. You are speaking to family; everyone has an opinion. Who do you trust? What are their motives? Will I die? What next? Then, we go into the five stages of grief. There are many questions; Google has become our best friend; we join all prayer lines or socialise as if there is NO tomorrow. We don’t talk to others; it’s the C word. Stigmatization—what will people say? We are hiding everything; nothing makes sense.
Understanding our lived experience will provide a picture of how we navigate through the journey with the understanding that some major variables are missing, making it even harder to have an informed understanding of a Cancer Patient’s Journey. My experience and interactions with other advocates globally with a focus on Nigeria, has highlighted my cancer journey and my lived experience.
Coming to terms means accepting that life is no longer promised. Understanding that our days are now numbered becomes our reality. Some accept the need to fight, others take advice not to undergo the treatment and some go for alternative medicines. Well, I chose to take all the treatments available. I recommend taking all suitable therapies, so you have at least given yourself the opportunity to have the best possible outcomes.
The financial impact of lacking funds is an area we don’t talk about. However, statistically, cancer patients lose all their income in two years. I am not an exception to this, but God has been good and continues to make a way where there is none. It is pivotal to mention that “cancer patients are the most expensive beggars globally.” We require continued financial aid as our lives change, and funding is now challenging.
Our mental health is impacted upon, and we are have limitations because we are not allowed to talk about it – CANCER. Family and friends closest to us tell us how to feel, think, and navigate. I only wish they knew.
Religious leaders who counsel us, prey on our vulnerabilities, and exploit us. With time and the wrong advice, the battle is lost prematurely.
Betrayal is a fundamental challenge we go through. I cannot address this yet, as it is internalised for now. A no-go area.
Support was supposed to be available, but this tends to come with conditions. Some of us take the wrong advice. In my opinion we could have been free if we had taken the right advice early on, hence knowledge is power. Advocacy, commitment, and awareness, through engagement with survivors will provide a better understanding of the disease and influence national strategies.
It is only fair to say that the various stages of cancer indicate outcomes. It is therefore important for individuals to remember; God decides the outcome. Always give yourself a fighting chance. I am still fighting whilst still taking chemotherapy daily and that is a lifetime change. Trust me it is not easy. I appeal that you help raise funds to support cancer champions in driving change in Nigeria.
Events (to guide the events page) – where we have images and summary lines of big past events, we show on website… We can talk about this later as the last thing to sort out. If the info and links not available…. For some, you would have already added the YouTube channel and we just linked back to that. – let users go to the embed to YouTube to look for the events.
- Let’s Talk About It Cancer – Monthly (Zoom) – Programs can be found on our YouTube channel.