The ‘C’ word: Why do we need to change the way we speak about cancer?
Quite possibly there are few diseases that terrify us as much the mention of cancer does. Worst still, getting a cancer diagnosis can throw many people into the depths of despair. The vocabulary commonly used triggers cancer patients and their loved ones into feeling that the worst will happen tomorrow. There are myriads of ages and stages of cancer. Are patients and their loved ones helped by the vocabulary that we use to talk about cancer? We routinely see, hear and read about ‘The war on cancer’, ‘battling cancer’, ‘losing the battle with cancer’, ‘fighting hard with cancer’, ‘there is no cure for cancer” and one of the latest additions to the cancer lexicon – ‘survivorship’.
People can be diagnosed with Type 1 Diabetes, a life threatening condition; they take regular insulin and make conscious and profound dietary changes. Is the diabetes ‘cured’ ? Does dialysis ‘cure’ patients with severe renal failure ? Do heart, lung or liver transplants ‘cure’ life threatening challenges involving each of these organs? We don’t talk about ‘curing’ these or other life -threatening diseases, but for some reason but we are being told that cancer needs to be cured, when actually what we should be striving for is – long term disease management. All of us produce potential cancer causing cells in our bodies all the time; our defence system is great at getting rid of them. However, sometimes there is just one cell who turns into a CIA agent who’s a master of disguise, refuses to believe the party is over and decides to rave on, pretending Prince is in the house playing ‘1999’. That’s essentially what cancer dedicates itself to doing.
If you or a loved one is currently undergoing cancer treatment or has recently been diagnosed, ask yourself one simple, possibly totally transformative question. Which business/organisation/group of people win when you have been made to feel so utterly terrified ? Furthermore, how good are the questions that you feel able to ask or the decisions you make when you have been deliberately triggered and all the voices in your head are screaming and yelling ?
We are decades past the point in which the way we talk about and view cancer has needed to be radically overhauled. For years, research has revolved around the entrenched belief that cancer is a genetic disease. Yet the is a significant peer-reviewed and cancer research that has proven that very few cancers have a genetic origin. Genetic changes can be seen in some cancers, but for the majority, these are changes that happen downstream as a result of cancer and do not cause it.
So , how can you play your part in the change I am seeking? Well, let’s start a meaningful conversation. Stay with me; I hope to empower you and indeed persuade you to join my cause. We need to start a movement that lays bare the foundations the current narrative of treatment and fundamentally changes the arc of research treatments, for the good of all.
I believe 100% that, going forward, we have the technology, the know-how and the means that will allow us to MANAGE cancer so that it becomes a long-term manageable health condition and not the end of days. It wasn’t that long ago that HIV was a feared diagnosis which had an awful prognosis. Patients, their loved ones and those left behind became a powerful, vociferous lobby demanding change and demanding treatment regimes that work. They didn’t let up on their demands and got what they wanted. HIV now has treatment protocols that allow people diagnosed with it to live long, productive lives. That’s what we all want to see for cancer.
First, my story…
28th December 2018 – the day I was told by my radiologist that the biopsy he himself wasn’t sure was cancer, was indeed just that – according to the lab results. “They’ve found some cells and they’re not good”, were his words. He apologised saying that it was news that he often had to give. My partner and I should have been celebrating a year of living in France. Instead, we were trying to make sense of my breast cancer diagnosis.
It was a blue sky; sunny as we drove back home, not saying much. Unsurprisingly. As I looked out of the car window, I remember thinking, “And just like that, you’ve joined the millions who have cancer”. As we drove along, I pondered at how normal the world looked and the news that I’d just been given. Now dear reader, you will no doubt find what I’m about to say sheer madness but, I remember feeing utterly relieved; now I knew what the ‘thing’ that looked liked a perfect pearl lodged in my boob – on my mammogram was.
I’d spent Christmas wracked with worry, praying and hoping for a clear biopsy, but I knew in my heart of hearts what was coming…and it did.
I reached out to the beautiful editor of this Christ & Co. website before diagnosis and asked her to put forth some of her mighty prayers. She did and has never stopped. I love her dearly for that. She’s one of the few people who know about my ‘cancer journey’.
Of course now you do, but you don’t actually know ‘who’ I am – as I’m writing this under a pseudonym – mainly to protect my soon to be 90-year-old mother. She’s had crises of her own to deal with and I know that she would have taken it extremely badly. I’ve spared her the knowledge and continue to do so. Helped in no small measure by that fact that we live in different countries and that she said years ago that she’s too old to learn to FaceTime! So I ring her most evenings and when she asks if I am okay, I say yes.
My mum can’t see that I no longer have my waist length dreadlocks, or the wisps that I now have as eyebrows instead of the magnificent dark thick treasures that I inherited from both her and my father. I’m fine with that. COVID restrictions are enforced here and the fact that she’s in a vulnerable group means that I can’t visit, so no visuals for her to be suspicious about. Frankly, if she asks, I’ll just say that I felt like having a new look. She’s been used to me doing dramatic things with my hair my whole life. When I separated from my ex-husband , I wanted a hairstyle that gave the world a message about the woman that I am…so I went to the barber and to his total consternation, asked him to shave my very thick shoulder length hair off ! It felt glorious.
I faced a very difficult decision – telling my children. All my children live in England and I am here in France. I didn’t want to panic them. After the separation and the divorce from their father, it became clear that in divorce, as in marriage, there was going to be no partnership in parenting our children. I became and remain their consistent ‘anchor’ parent. The initial decision not to tell my children caused a great deal of friction between my partner and I. He felt very strongly that I should tell the kids and threatened to tell them if I didn’t. He didn’t, but I was furious. I understand now that his feelings came from a place of fear, for all of us. I very possibly would not have told them were it not for the fact that my youngest two decided to visit, two months after I started treatment. I looked very different; there were bound to be questions.
My GP here was and still is wonderful. When I went to see him, he acted very fast and made sure that I saw who he felt were the best people. I met my surgeon at the beginning of January. Until that point I had assumed that all women who had breast cancer had mastectomies. I dreaded it, but I was very surprised when he said that I was going to have a lumpectomy, which would remove the tumour and conserve the breast. So that was a positive result, however, because of my hormone levels, he said it would be best for me to have chemotherapy and radiotherapy. That was scary territory – before cancer (BC) I’d seen the horrible pictures, read, heard and seen the awful stories across any media you care to mention. I was crestfallen at having to have chemo; I really didn’t want to have it and considered refusing it, but as my partner said at the time “Better that than the alternative”.
My surgeon, a lovely welcoming man, said that my recovery from the operation and going through the whole treatment would be tough, but I’d be helped by the fact that I don’t smoke or drink and I eat a healthy diet and keep fit. He also advised me very strongly to do some form of exercise for at least 30 minutes every day, guidance underscored by the huge number of research papers dealing with the importance of exercise during and after treatment. I took him seriously.
On January 11, 2019, I went in for the operation and 24 hours later, was discharged home. Again covered in prayers by the wonderful editor of this site.
As soon as I knew what my diagnosis was, I was online looking for natural ways to support myself through treatment. I’m a great believer in ‘natural’ where possible. I got in touch with Dr J, my Chinese medicine doctor and acupuncturist whom I’ve known for over 25 years. I told her my diagnosis. She reassured me, telling me to take the chemo and she’d help me with the side effects. She was true to her word. She sent me Reishi mushroom powder and some pills.She changes the pills that I take but she insists that I continue with the Reishi powder.
Chemo was certainly not as gruesome as I feared it would be. The thing that I found the most debilitating during chemo was the nausea. Nothing seemed to help with that, not even the anti-nausea medication given specifically for cancer patients having chemotherapy. Luckily, it didn’t last that long. Via a breast cancer forum, I made friends with a wonderful group of women going through treatment at the same time as me, we’ve become great supports for each other ever since. I think everyone of them had to have treatment delayed for one reason or another, mainly blood results. Thanks in part to Dr J I am sure, I never had to have any session delayed. I carried on as normal, apart from my ‘nausea’ days.
I’d read and was told that with radiotherapy, I would experience terrible fatigue. It knocked some of the women I’d made friends with for six, but it never happened with me. In fact, my eldest son and his partner came over on holiday while was I going for my daily sessions and they hadn’t realised until it was near the end of their holiday that I’d been going for my sessions. I made sure to have them early in the morning, so we’d have family time without interruption. A taxi picked me up each morning to take me to the radiotherapy department about a 30-40 minutes drive from my home. Each session only lasted about 5 minute, then I would get dressed, be back in the taxi and home. When my grandchildren appeared I’d invariably be making breakfast.
The take away from all this is that everyone’s treatment journey is very different.
Hugely influential in my journey were a two papers written by Dr Thomas Seyfried, a biology professor at Boston College in the USA, who believes that cancer is a metabolic disease. Dr Seyfried has built on the work of Nobel Prize winner Dr Otto Warburg who believed that depriving cancerous tumours of glucose and oxygen deprives them of the fuel needed to create internal cell energy and drive growth which in turn leads to cell death.
Dr Seyfried is a great proponent of the Ketogenic diet for cancer patients in conjunction with medical protocol that isn’t centred around chemotherapy. The ketogenic diets revolves around significantly reduced carbohydrate intake and while at the same time eating adequate amounts of protein and increasing fat intake. The diet forces the body to burn fats rather than carbohydrates for fuel. This fat is then broken down into ketones by a process known as ketosis.
The belief is that unlike healthy human cells, cancer cells can’t use ketones for fuel and thus have no source of energy. The decrease in carbohydrate intake reduces the available amount of glucose the cancer cells need as fuel and effectively they starve. Ideally, any kind of diet for medical reasons should be done with expert help and/or supervision.
I tried the Keto diet for a few weeks, unfortunately I had to do it on my own as the hospital where I went for treatment didn’t have a dietician! Keto diets aren’t quack medicine; they have been used with great success in children who suffer from severe forms of epilepsy even thought they’re on anti-epileptic medication. There is increasing interest in its use in cancers, particularly cancers of the brain.
Nevertheless, having done my due diligence and educated myself as much as I could on the benefits and draw backs, I ‘listened ‘ to my body as I tried it. The Keto diet was a good start, especially going into treatment, even though for years I have had problems metabolising carbohydrates (I don’t each much bread, pasta etc) Drastically cutting them out to near zero just didn’t work for me. No matter how much I reduced my carbs or left increasing amounts of time between meals, I couldn’t seem to get into ketosis. When I experienced one too many episodes which felt like a hypoglycaemic attack, I decided to re-introduce some of the ‘healthier’ carbs back into my diet. Simple things like sweet potatoes or pumpkins, instead of regular potatoes.
At the same time as discovering Dr Seyfried, on YouTube I found a fantastic TED Talk by Dr William Yi called ‘Can We Eat to be Cancer?’ I found it really empowering to find out that not only is there something I can do for myself, but also, there are foods that have cancer preventive and curative powers. Curcumin, pomegranates, mushrooms, broccoli, garlic, onions. Great for me that my partner is a vegetarian and although I occasionally have a little meat, I eat a vegetarian diet.
Believe me when I tell you this – if you have or have had cancer, you need to take a good hard look at your diet. Do your own research, but one thing is for sure, you will have to make changes to what you eat. Again there’s a growing body of research that speaks to altering our internal ‘terrain’ so that cancer cannot thrive. Good, healthy food with all its micro-nutrients is one way to do that because we need an optimally functioning gut micro-biome. Don’t believe me? Do you own research. For instance, did you know that there’s ongoing research into whether specific bacterial infections in the gut and gums are implicated in pancreatic cancer ? No? You do now!
I finished treatment in September, 2019. It seems like an age away now. Physically I’m great, as mine was an oestrogen driven cancer I take an oestrogen blocker daily. Easily do-able. Post -treatment, it can be a bit of a rollercoaster psychologically at times. The biggest challenge is learning to trust your body again. That and the fact that I look very different to the women that I used to see in the mirror, but all in good time. From what I’ve been told by the professionals I’ve spoken to, these feelings are entirely normal.
I discovered meditation just before starting treatment. What joy that has been. It was as important a part of my regimen, as the treatment that I had to go through. I still continue with it. If I lapse for a few days and just jump into my usual busy day, I can definitely tell. I prefer to lie down for my mediation practice, I just breathe and bliss out.
So, now, it’s on with the delight of living. Being diagnosed with cancer and going through treatment has taught me so much about myself. Just as importantly, I’ve learned a lot about cancer and frankly, I’m angry. We don’t need to be where we are now in cancer treatments and management, we should and CAN be so much further ahead. Accepting the current treatment narrative cannot be the legacy that we create for our children and grand-children.
We can definitely make changes happen, but we need to come together into a mighty movement.
By Hannah Rae,
Christ & Co.
(Hannah is part of our Editorial Board. She is a journalist with extensive experience in top media organisations across Europe. She was diagnosed with breast cancer in December 2018. With amazing courage, she has faced this tough journey – supported by the prayers of many and with the love of the Lord strengthening her – all the way. We are super happy to have Hannah back with us! Proud of you, dear friend.)