By using the characters of Winnie the Pooh, Prof Carol-Ann Benn helps us understand why we all manage a health crisis differently.
In the last few months, I’ve seen a significant number of advanced breast cancers. These cancers didn’t arrive with lockdown. Many have been there for a significant time prior to lockdown.
Lockdown has indeed resulted in less screening but due to many factors that contribute to our health-seeking behaviour choices, we are seeing many advanced cancers.
You have a problem: felt a mass; discharge from the nipple; breast pain. Alternatively, the concerning mass has been there for a while and you’re stalling to go seek healthcare. Or you have gone for a routine mammogram and something is there: a small mass, and the radiologist has told you a biopsy is needed. You’re fearful, and what about the cost?
Disclosure: I’m scared of every medical disease out there. I decided, though, when I knew COVID-19 would hit our shore that I wasn’t going to ‘lock up’ but put my big girl panties on (they’re very small). I sat my kids down; changed my will and explained that I was going out there to protect my cancer patients.
My health crisis
During lockdown, in full COVID gear, I fell down the stairs and in good avoidant medical style, I refused help (1). Drove myself home (2). Asked Charl to perform a bush medicine assessment of my ankle and foot (3) and sent staff to buy healing bath crystals. Went straight back to work, I needed to finish the list (4). Despite a blue foot for a week, I avoided all medical assessments out of fear of needing surgery (5). Eventually I went for scans and panicked at my interpretation of the results (orthopaedics isn’t my strength) (6) and shouted at Charl (7) after I googled foot fractures (8).
I waited a further week before more tests and only then went to see a specialist in the field (9).
Break down of my health-seeking behaviour
- Refused help. Have you told anyone about your healthcare concern?
- Avoided healthcare facilities. Are you scared of going to a hospital?
- Opted for alternative options instead of conventional healthcare. Have you decided that a tincture of a non-threatening substance or therapy doesn’t have any risks or side effects?
- Hid behind my excuse of work. This could be family or any other excuse to avoid seeking help.
- Had a mental image (fear) of what treatment I would need.
- Attempted to analyse my own results (badly) after delaying going for tests.
- Raged at my loved ones.
- Accessed the internet for the answer.
- Delayed, delayed, and delayed before seeing a specialist.
All of us fear and thus avoid seeking help, react with angry outbursts, seek healthcare options that suit us, and pressurise those around us to conform to our choices. I wonder why that is? Part of our decisions, rightly or wrongly, are based on our nature and the nurture of hostile medical environments.
The things that make me different, are the things that make me, me
Knowing that we’re all going to be faced with a health crisis, I’ve decided to use Winnie the Pooh and friends to highlight how we may understand our natural inclinations and responses to stressors around a cancer (health crisis) diagnosis and thus enable us to cope.
Knowing our strengths and weaknesses improves our ability to take control of what seems like the uncontrolled and unavoidable, and helps us participate and choose our health paths.
The setting is the Hundred Acre Wood; our life. Trees are majestic representations of life. The concept of a forest or jungle (many trees) maybe more intimidating to negotiate. Paths we hope we can find through a wood (ability to choose direction) when we only have a hint of sunlight through the trees, plus scary noises and creepy crawlies. Is this life?
Possibly, and more how we feel when we’re faced with a health crisis. We don’t see the beauty of the trees. Why a 100? I think we all wish to live to a hundred. And when we are faced with a health crisis suddenly this doesn’t look like a possibility.
Critical to the 100 acre woods of our lives are the safe spots within the woods: our homes (the homes of Pooh, Kanga, Rabbit, Piglet and Owl); our work, possibly the sandy pit where Roo plays.
Who are you in a health crisis?
Well I think I’m Tigger mostly, that bouncy ADHD person that can’t sit still for two minutes. I’m better busy at work than anywhere else. And I’m Piglet, anxious about not being able to help someone with breast cancer. Anxious that I haven’t had my regular gynae appointment.
The Pooh in me could be my middle of the night insomniac chocolates, and desire to please. Christopher Robbin is me being responsible at work. Owl is me in my academic life, checking every aspect of information and research around breast cancer. Kanga, in my attempts at managing 40 specialists, admin, registrars, interns and students. Eeyore, in my concern about healthcare in SA and worry about oncology referrals. Rabbit when I’m at home and OCD, well-meaning but not always getting it right.
So, look at yourself. I don’t think we’re one character but rather a combination. Work out who you are to help you deal with the nine steps that we all go through when we hit a health crisis.
This should be how we think of ourselves. Insightful, helpful and trying our best. Slow on who we should believe and maybe naïve (do we trust the first medical consult, or our friends in what we should do and who we should see).
Portraying ourselves as upbeat and cheerful as we battle with stressful diagnoses. Blissfully unaware of consequence (have you checked all your options, insisted all your files are reviewed in a reputable multi-disciplinary meeting?) Do you seek advice and listen to others? Feeling safe once things are explained a couple of times in such a way that you feel like you’re sampling from the honey pot.
Pooh can go with the flow but doesn’t look out of the box (sometimes we don’t look at all the options). Pooh needs to have his friends around him. Who are your family and friends in a time of need?
Intelligent, timid and prone to stage fright as you deal with life. Looking for a place to hide and thus not confronting your healthcare concern whilst feeling small and helpless. Do you agree with everyone around you, going with the first option or allow family and friends to dictate what you do in a health crisis? Remember, “You’re braver than you believe, stronger than you seem and smarter than you think.”
Do you expect the worst? Something is wrong and you need to do something about it but the outcomes won’t be good so what is the point. You are cautious about who you should see and reluctant to go with the medical options provided. No one really understands what you’re going through, and actually no one can help you anyway. Not your friends, family or your healthcare team. The treatment won’t work anyway. “Could be worse. Not sure how, but it could be.”
Nothing will get you down, not even a health crisis. So what if you have had a scary medical diagnosis! You’re going to run head first into treatment and get back to life. This isn’t a life-changing event but a mere blip.
Unaware of long-term consequences, you’ll portray yourself as fearless, resilient and resourceful. You’re going to beat this cancer and take this treatment on as this is what Tiggers do best. This is an adventure and you’ll be fearless and optimistic about the outcomes.
Do you approach life and health crises with a smile and compassion for those around you? A courageous attitude, an organisational approach (lists, questions and research), and acknowledging this isn’t your field of expertise.
Everyone thinks you’re fierce but you’re so kind and concerned about others that you may avoid looking after yourself. You remember everyone’s birthday; offer advice and are always available.
On the outside your life looks so controlled and organised and you’re a master multi-tasker but with your open-door policy of helping everyone who’s struggling, you may be not seeking help for yourself.
Asking why and requiring answers to questions but not necessarily questioning the answers. Trying to analyse all the data as what is happening and requiring confirmation of safety. Are you that irritating?
Do you think you’re the smartest animal in the woods? Continually making plans, questioning everything, obsessing about doing it your way, and offering suggestions to improve the current options. Are you obsessed with rules and ‘flex’ isn’t your middle name?
Old and wise but pulling facts and figures out of thin air. You may not be checking if your conclusions add up because in your rambling jargon (long-winded assessments of medical choices), you may bluff yourself into believing that the alternative healthcare options may be the correct one.
Take control by consent
So, this is my interpretation of bits of us that motivate our healthcare choices. Whilst we can’t change the fact that the accident has happened, how can we take control whilst dealing with all our personality bits?
The answer is consent. Now there are times in medicine where there is a true emergency: heart attack, stroke, serious car accident. But breast cancer isn’t one. You may be petrified and think the word cancer suggests death and an emergency, but it’s seldom a 24-hour life and death issue.
The only way you can control fear is by taking charge. You may think you have no control but you do, by using the small word consent.
What is consent?
The definition is: “permission for something to happen or agreement to do something.”
Consent in medicine should be written for any procedure and explained by the clinician doing the procedure. Consent involves understanding the pros and cons and costs.
When you need consent for a breast cancer concern
• At the radiologist when you need a biopsy. Do you know that it’s not an emergency? You need the costs. Beware of radiology units that refer you for a surgical excisional biopsy. This isn’t recommended by any international guidelines and means that the unit isn’t following safe guidelines.
• At the surgeon. No one should have a surgical biopsy today, or a blind (this implies no radiology) needle biopsy. Any blind needle biopsies require consent. Needling without is assault.
• A surgeon who recommends surgery without giving you feedback from a reputable multi-disciplinary meeting. Again, there is no emergency breast cancer surgery. No one died of breast cancer in the breast, only its ability to spread. So, don’t rush into an emergency bilateral mastectomy. Breast cancer doesn’t jump from one breast to the other.
• An oncologist who suggests that you need to start chemotherapy without discussing your case in a multi-disciplinary team.
Do you understand the pros and cons?
Now that you’re going to take control by consenting to your healthcare choices. You need to understand that consent means understanding the pros and cons. All the nitty gritty; much like reading all the T&Cs (makes me panicky).
When you read a consent form and it says the following treatment regime may have the following side effects, this can be super scary. “It is more fun to talk with someone who doesn’t use long, difficult words but rather short, easy words like, ‘What about lunch?’” Have the consent form explained to you by your healthcare team.
Remember not all potential side effects happen and the consent form should give a person pause to have a multi-disciplinary opinion or a second opinion. This is where your buddie comes in. “If you live to be a hundred, I hope I live to be a hundred minus one day, so that I never have to live a day without you.” Go over all your options.
CONSENT stands for
- Non-medical terminology
So, you can’t change you. You can accept you. You can’t change the event but you can empower yourself with consent. “If possible, try to find a way to come downstairs that doesn’t involve going bump, bump, bump, on the back of your head.” “Think, think, think.”
MEET THE 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 Breast Health Foundation.