Prof Carol-Ann Benn creatively compares a breast cancer diagnosis to falling down the rabbit hole.
Do you remember the book? Or the movie with the yummy Johnny Depp? Or the rumours that Lewis Carroll may have been smoking something not so medicinal. The real story is: he was a brilliant mathematician (the analogies are all maths related). No wonder we battle with Wonderland!
Falling down the rabbit hole
Alice tumbles down the rabbit hole and lands in a strange world with weird creatures. Falling down the rabbit hole means that your life will be forever different and the concept of returning to your old life is no more. How scary!
Yet, this is what it’s like for patients suddenly being confronted with a diagnosis of cancer. Tumbling for no rhyme or reason.
Sometimes when we tumble down the rabbit hole, the where and how we fall plays a role in the directions we choose when embarking on the strange journey of cancer treatment choices.
The most important aspect of a tumble is how we adjust to the fall and our ability to slowly dust ourselves off and choose a road.
What kind of Alice are you?
The Caterpillar asks Alice “Who are you?” Previous life experiences; our fundamental personality types; whether we have a cautious questioning nature; or are consumed by anxiety and fear (me); and our basic ability to manage our life stresses determines what our response is: flight or fight.
I was listening to a self-help guru commenting on embracing chaos; thinking that is not my strength, causing it, however, is.
So, when faced with a health crisis before boldly stepping forth on your chosen road, evaluate your strengths and weaknesses, and who you’re going to choose as your travel companion (they need to compensate for your weaknesses and improve your strengths). Do not blindly follow the White Rabbit to the Queen of Hearts!
Eat me, drink me, and find the right key
How do you respond to having to go through that small scary door into Wonderland? Do you grab the bottle of ‘Drink me’ deciding that you’re going to be huge and tower above all, or the small cake that reads ‘Eat me’, to shrink down to contemplate the road ahead? And, how do you find the key to the right door (for you) sitting on a table out of reach? Do you let someone fetch it for you? Do you just accept the GP or the friendly radiologist opening the door to where they want you to go?
I recently saw a couple (an academic and a practical partner) and watched how she was so sure of what she needed; the control and rapidity to start her journey that she did not engage or listen to the practical partner. Rushing to ‘begin’ as a coping mechanism, when diagnosed with breast cancer, is often not the most sensible first step.
The March Hare – “I must not be late”
Don’t panic yourself into “an emergency mastectomy”, thinking it replaces chemotherapy; or not understanding if you need radiation and what your true local staging is prior to starting.
With all journeys, you should understand the safety of the vehicle – what your health risks are; the bloodhound that you’re travelling on; the road map – do you start with surgery or chemotherapy? What is the direction of the journey? Do you need radiation? Can you avoid certain treatments?; the need for provisions – can you access the treatment you need? Are there other drug options? What diet, lifestyle and exercise choices should you make while on your treatment?; and the concept of who is your fighting army (choose your army well); and lastly, the destination at the end of this road should always involve slaying the Jabberwocky (cancer).
Not everyone will take the same road nor the same time to travel the road. Not everyone will want to lift a sword; but we all should fight to slay the Jabberwocky. Not fighting is not an option. Here partners, friends and common sense help, and intelligence does not equal wisdom.
A Professor who has hit the road running without stopping to check the obstacles in the way. A nursery gardener who is determined to slowly smell the roses and take time in deciding which road she should take. A teacher who has listened to all options repeatedly and is still undecided. To each there own. As long as one remembers that in Wonderland there are strange faces and events that confound and befuddle and thus make choices difficult. Be wise.
Don’t listen to Tweedledum or Tweedledee
The first step is identifying your trusty watch – your friend and companion, the voice that doesn’t always agree with you but listens and is a constant, the person that dissects your thoughts and helps you with the direction.
Your trusty watch needs to not send you on a tangent, nor be passive but to continually put perspective on decisions. Anyone with the absolute answer usually doesn’t have the answer. And, Tweedledum and Tweedledee are often just dumb and dee-termined to confuddle. The comments like, “I am so sorry, my gran died of breast cancer”, “My cousin died from chemotherapy”, “Aunty only did a lumpectomy and then the cancer came back in the other breast therefore you should take both your breasts off”, “I know this Dr that has a 100% cure rate for all cancers and uses only tiny doses of chemo (side effect free)”, “Use only green oil from this new plant.” All rubbish!
Who is your Mad Hatter?
Which doctor is the right one for you? Have you asked your friends and family? Have you researched the options? Are you just going to believe the radiologist who refers you to the surgeon at his or her hospital, or the one that refers to him/her? Do you believe the doctor who says, “You can’t see so-and-so, the practice is full.”
I know I have an open-door policy; I will see someone within 24 hours of diagnosis just to ensure that they stop, think and go for opinions. My first words are always, “It’s your body; you’re entitled to as many opinions as you like. Remember equally good care can be found in our local government units and in Gauteng. You can even have second opinions in the government units.”
Remember the Caterpillar smoking his hookah? Often the start of the journey can be confounding with many people suggesting strange choices. There is no emergency to starting your journey. Nobody dies of cancer in the breast but rather its ability to spread. If you are told by the surgeon you need an emergency cancer surgery, that surgeon is behaving like the Red Queen… “off with your head”, or more aptly “off with the surgeon’s head.”
The White Queen
Biology of cancer is the White Queen. Do you know whether this cancer is a luminal A or B; HER2 or triple-negative? And the stage of cancer? Possibly the castle dictates the control over what treatments are needed in what order.
The Cheshire Cat
Popping up when needed with sage advice. The Cheshire Cat represents your navigator. This could be a nurse navigator or one of the doctors you are closest to. Remember when Alice asks the Cheshire Cat for directions, and he answers, “That depends are where you want to go.”
The Tea Party
The multi-disciplinary team (your protection) is the tea party. With the happy unbirthdays that we celebrate to ensure many more birthdays can be celebrated.
Who is your Mad Hatter that has placed you in a teapot so you can hear the entire goings-on and options available from the multi-disciplinary meeting.
Remember there is not one way to treat breast cancer; of course, there are principles and rules. One treatment does not replace another. You may need to face the Red Army (chemo analogy here) to slay the Jabberwocky.
Many times, I say local treatment (surgery and radiation) does not replace oncology (comprising the four compass points: endocrine, target therapies, chemotheray and immunotherapy). And, not everyone gets all.
What is your roadmap to managing Wonderland?
Alice, I do believe that you are capable of more than six impossible things before breakfast.
* NICE – National Institute for Health and Care Excellence.
MEET OUR EXPERT – Prof Carol-Ann Benn
Prof Carol-Ann Benn heads up breast cancer centres at Helen Joseph Hospital and Netcare Milpark Hospital. She lectures at Wits University and, in 2002, established the