Caught in a moment of fight or flight

 

Three-quarters of a year later, the fourth doctor told Dad that his previously misdiagnosed shin splints and tennis elbow were actually the effects of cancerous cells eating away at his bone marrow. “A moth-eaten texture” is how they described it when looking at his X-rays. His bones were being compared to a mouldy T-shirt or neglected sock left in a cupboard for so long that bugs began to consume it.

 

Dad was joining the one in 244 men in South Africa who are diagnosed with non-Hodgkin lymphoma (NHL) every year. Diffuse large B-cell lymphoma (DLBCL) is the most common form of NHL, scoring seventh on the top ten most prominent cancers in the country. The first symptom is swelling in the neck, armpit, or groin, which is caused by enlarged lymph nodes. This was probably going on in Dad’s body when he was told he had shin splints and tennis elbow.

 

“I don’t even play tennis…”

 

Other symptoms include night sweats, fevers, and weight loss. Dad was sleeping on a towel and having to place a second set of clean pyjamas next to his bed well before he had even been diagnosed.

 

While undergoing treatment, Dad made an effort to know the shortened life-story of every medical professional he met. His favourite were the nurses at the oncology unit. They would humour him, giggle at his cheesy, dad-like jokes, and allow him to squeeze the life out of their hands when the needle went into his paper-thin hand. This is where Dad met *Jane, a general practitioner specialising in oncology. Jane’s father was diagnosed with early-detected prostate cancer in 2011, the most common cancer in South Africa for men, having a lifetime risk for one in every 26. At this stage, Jane was working in emergency rooms and had no experience with oncology, besides the two weeks exposure she had while studying.

 

“I was freaked out.”

 

It was at this point that Jane began delving into research, in the hope that her knowledge could be of use to her father. Prostate cancer is a slow-growing cancer. The patients can outlive the disease and die from something else. Jane’s father had brachytherapy, similar to radiation. A radioactive seed is planted into the prostate to chemically localise the tissue requiring destruction. He was put on hormone therapy to reduce testosterone levels, which came with many side effects.

“Prostate cancer is testosterone-driven, like how some breast cancer is oestrogen-driven. The therapy made him almost become like a woman; with hot flushes, very emotional, and muscle weakness.”

 

On a daily basis, Jane will see eight to ten patients either for follow-up appointments or during treatment to check for side effects. In between visits, she will do a ward round with the oncologist and help out if there is ever an emergency. She has been working at the oncology unit for just over a year and a half. Her relationships with the oncologists are often difficult because of some of the decisions they make. She is against over-treating; when the oncologist will give chemotherapy to elderly patients, or when the cancer has spread to most of the body.

 

“I have a faulty gene.”

 

Last year, Angelina Jolie chose to have a preventative double mastectomy, after learning that she carries a mutation of the breast cancer one susceptibility protein gene (BRCA1). She told the media that her doctor estimated she had an 87% risk of developing breast cancer and a 50% risk of ovarian cancer.

 

Dealing with breast cancer takes up most of Jane’s time.

“I saw a woman today who wanted both off because she was so scared, and I told her from an oncology perspective we will not opt for that. That is a lack of understanding. Cancer can occur in the other breast, but it is not confined to the breast, it can occur anywhere. So just because you’re removing it does not mean that you are safe forever.”

 

There is a three-tiered process when a woman chooses to have reconstructive surgery. The mastectomy will be performed, then the woman can either have reconstructive surgery immediately or after treatment, and then a third operation is needed to craft a nipple.

Breast cancer patients will make use of the fact that Jane is female herself; asking her whether she would have reconstructive surgery or not. Many choose to have reconstruction only after treatment because radiation will affect how the tissue contracts and modify the scar that remains after the mastectomy. Jane says that if it was her who had to make the decision, she would have reconstruction immediately after the mastectomy.

 

“It is very traumatic to have a breast removed, especially for the younger women. It affects them very badly. A woman today wanted the reconstruction done immediately in the same operation because she does not even want to see herself without a breast. Having reconstruction is a huge, massive operation involving lots of pain and many problems go with it.”

Jane has concluded that nothing is as good as God’s work. Often the breast will be made from a muscle flap that ends up looking nothing like the original breast. The prosthesis, on the other hand, is very bulky and heavy, and women do not feel feminine when wearing them.

 

Many follow-up patients will ask Jane if they should have reconstructive surgery, but she will often discourage it, assuring them that if their husband is happy and they are comfortable with the way that they are, there is no need to endure further pain. Many say that if they could choose again, they would not go through the reconstruction process. 

Jane has found that it is the follow-up patients and the older women who are more likely to have a sense of humour when it comes to losing a breast. Many nickname the prosthesis or bean bag, calling it their other half, or describing their bodies as lopsided.

“The older ladies I see, they just do not care. They are so happy the cancer is gone that they just stick to a bean bag or something. In the higher socio-economic groups you will see women getting tattoos on the scar to deal with it, or even nipple tattoos on the fake breast.”

 

Dad never had to deal with anything like having a body part removed, let alone something as invasive as a mastectomy. He did not have to face the fact that a part of him would be man-made for the rest of his life, or that something that formulated who he was, had to be chopped off and thrown away.

 

“I’m so ugly.”

 

When we heard he had to have chemotherapy, our biggest worry was the internal side-effects. The nausea, the ulcers, the vomiting. Not once, had we considered what it would be like for a man to lose his hair, lose a third of his weight, and develop that sickly look. Not even Dad had considered it. Perhaps, if we had, we all would have been more prepared for what was to come.

“I’m so ugly,” he said, as he stared at his balding reflection in the mirror that stands in the entrance hallway of our home. His head spotted in sores, his stringy eyebrows, his cheeks puffy from the bleeding mouth ulcers. The remark was received with a choir of straining responses. “Don’t be silly”, “We’re the girls of this family”, “Lots of men are bald naturally”. He did not budge. We knew our attempts were pathetic, perhaps even insulting. We three girls returned our eyes to the TV, but my mom kept hers on Dad. Her face set in a weak smile, just in case his eyes met hers.

 

I would groom Dad in any way that I could. Apply creams and sun protection to his head, trim his finger and toe nails, rub his creased feet. We even came up with nicknames for him, like “egghead”, just to lighten the mood. He would accept them and even respond with a smirk.

I tried ignoring the metallic scent about him. I hated it, it repulsed me. I felt like I was trapped inside our medicine cabinet. The second that you open the door to find a painkiller or a plaster to soothe a paper cut, you are overcome with a pharmaceutical smell. The cabinet sits on top of the reflective microwave in our kitchen. The one that I will often use as a mirror before I head out of the house.

At first, I did not understand Dad’s scent. I would ask, “Dad, have you brushed your teeth?” I discovered it was a result of the treatment. At first, he took it lightly, but as the frequency of my question increased, he began noticing the odour too. So, I stopped asking.

 

“Losing hair is worse than losing a breast.”

 

A man’s hair falls out. That doesn’t sound too bad, many men bald with age anyway. A man loses his hair to illness. Now that’s worse.

Dad has a secret love affair with going to the hair salon.

The boys from our brother school would dread the end of the vacation. Not because long days at the beach were over, that was only a small part of it, but because they would be expected to cut their shaggy hair, in preparation for school. They would grow it with pride all summer, some even adding random colours to the tips. Returning from the hair salon, with faces of defeat, the first day of school would be spent comparing which number they had received on the electric trimmer. Usually none ever experienced the dreaded “number one”.

 

Dad is different. He would book an extra slot at the hair salon just for those few, additional minutes spent getting his head massaged and his hair shampooed. He would return home to find us girls and while looking at his trimmed hair in the mirror, ask us what we thought. I could never really tell a difference. Before and after, definitely, but in comparison to all previous haircuts, not really. They all looked the same, but to Dad; it was like reading and experiencing one’s favourite book all over again.

Lisa* is a woman who understands hair. She has been a hairstylist since 1985 and opened her own business 20 years ago. Dad was probably one of her first clients. A new hair stylist was in town, so he would be there.

 

At first, she tried to fight her talent. It was the route everyone expected her to take. Her parents were hairstylists, her aunt was a hairstylist, her being one would be just too predictable. However, she accepted her vocation when she found herself becoming jealous when having her own hair cut. Wanting to grab the scissors out of the stylist’s hand and furiously begin chopping again, like an addict released from solitary confinement.

 

Seven years ago, Lisa returned from work, removed her shoes and found a piece of sticky-tape attached to her foot. Slowly, peeling it off, she realised she felt nothing. No sensation at all. That was the start to the numbness. It was in her feet and hands.

Soon after, Lisa noticed the lump that had begun growing at the base of her skull. A very slow-growing neuro fibroma on her spinal cord on the C1 vertebra that had been with her for 15 to 20 years. Results came back and it was benign, but would have killed her within months if not removed.

 

Cancer began to play in her mind. The cancer lifestyle and everything that comes with it. The internal, the external, the spiritual and the emotional. Lisa decided to dedicate her life to making one part of that process a little bit more bearable.

Lisa buys hair wigs from overseas and loans them to female cancer patients who have lost their hair due to treatment.

“I did a Shavathon a few years back and I shaved my sister’s hair off. The next day, my sister woke up and she sobbed because of the loss of her hair. She was not even ill, yet she experienced that entire change that cancer patients go through.”

 

Lisa has discovered that it is easier to lose a breast or a lung, over losing one’s hair. Hair defines whether one is sick or not. It is external, something you cannot hide. Lisa guides patients with how to wear, style and treat the wig, and provides them with easy tips on what make up and jewellery to use that will complement the new hairstyle. Today, she has a collection of 18 to 20 wigs.

Lisa and Dad were in contact throughout his illness. She treated his hair before it fell out, and shampooed the fluff when it began to grow back. She says that hair-loss is not a gendered experience.

 

Dad treasured his hair and he struggled as he watched it fall away. He even missed the black hair on his hands that stopped right at the edge of his knuckles that made it look like he was wearing fingerless gloves.

“You think you need a hairdresser when you have hair, but you need them more when you haven’t.”

 

“Aim as high as you can.”

 

Dad lost a lot more than his hair. Chained to a chair or bed for most of the day, he lost his ability to live life.

I hated being away from home. I hated that I had to study. My sisters told me my presence would not make a difference. Things were difficult regardless, but I could not believe that. I envisioned dropping out, moving back home and putting my degree on the side-lines. My work would be to uplift the family; keeping the spirits high and the negativity at a low.

Dad would never allow it. The thought of me dropping out in the final year would worsen the illness. Academic success and education are of the greatest importance to him. It had been drummed into us. “Aim as high as you can possibly achieve,” he would say.

My support would have to wait until the weekends.

 

We would stay at home. Money was tight and Dad could not risk contracting an infection or eat anything that would intensify the nausea. His response to restaurant food proved that. My arrival would be greeted by an embrace from mom, and a furious lick from the family sausage dog, Sushi. Mom would then return to her cooking and I would join the sisters in the colourful TV lounge, previously known as the “play room” which used to be stuffed with Barbie dolls, Lego pieces and miniature plastic stoves and microwaves, during our childhood. Our messy pieces of artwork that remained framed and hung on the blue and yellow walls of the room, reminded us of that.

 

I would find Dad in his bed. While sneaking a look at him, my mom would whisper violently, warning me not to disturb him.

Chemo weekends were the worst. They came every three weeks, but the time in between them always seemed to lessen, as the side effects worsened. Sushi would be the only to greet me. My sisters would be out of the house, anything to escape the meaningless waiting, and mom and Dad would return late at night after the often, eight-hour sessions. Dad would be tired, mom would be frazzled.

Early Saturday mornings, often before the sun had risen and the birds still hidden, Dad’s spirits would be on a dangerous high. The steroids would have kicked in and he would be gardening or cleaning out the pool filter. If it was the latter, Sushi would be locked inside, her screams of excitement waking the rest of us.

 

In the past, she had been allowed to chase the water as it gushed from the filter and raced to the bottom of the garden, where it collected into a small kiddie pool.  She would bite at the stream as if it were a thick snake trespassing on her property. The remainder of the day she would cough and splutter, causing her to be banned from participating in this thrilling monthly ritual.

One such Saturday, Dad had been out of bed after just a few hours sleep. The steroids had been quick to react, but even quicker to wear off. I returned from breakfast with a friend. I immediately heard whining, almost like a soft choking. The house seemed empty. No one was in the TV room, or washing dishes in the kitchen. I found my sisters and mom in her bedroom, sitting on the tightly-made bed which was now creasing beneath their rears. Their eyes were dilated and they all had a frenzied aura about them. Almost shivering, shuddering at every stifled cry which was commencing in the background.

 

“Dad won’t stop crying.”

 

He was belting out in pain. I found him outside, sitting in a faded garden chair, clutching at his stomach which was covered with a red blanket. “It’s so sore,” he shouted, “Take away the pain God, please stop the pain, Jesus.”

Over and over he said this as I stood there watching. I realised my family had failed at comforting him, so instead they had retreated, in the fear of breaking down and making things worse. Sushi was nowhere to be found. It was strange since, as a family, we had all experienced such comfort from our pets during trying times.

 

When Dad’s mother passed away, the only person who remained from his side of the family, he had wept into the soft belly of our caramel-coloured British Shorthair, Tinky. Her paws had laid casually on his dark, bushy arms, her dense fur soaking up the salty liquid. She had not budged, and even a quiet purr had escaped from within her. But this time, even the animals had felt the sense of helplessness. There was nothing that could truly remove the ripping pain that was swelling inside Dad.

My mom and my sisters joined me outside, this time a bit braver. The sobbing escalated causing my sisters and mom to join in. I had only seen my mom cry at the death of family members, or at the end of one of her sombre books. You would never catch her reading anything with an ounce of humour. Only gloomy non-fiction or thrilling crime novels. But the powerful wall that she put up for us children had begun to deteriorate from the moment Dad received his diagnosis. Seeing mom cry almost on a daily basis, every time we prayed or before every medical exam, was a shock to all of our systems. I took Dad’s hand and began the prayer with a croak. I would not cry. I prayed against the agony, against the fear and against the misery. No one else said a word, unlike the mixture of voices during our family prayers. The family’s crying increased as the words escaped my mouth. Pleading for healing.

There was no miracle, Dad’s nausea and bouts of pain remained, but the sound turned into a soft whimper. Mom did not turn her snivel into a smile, but we all remained there. Surrounding the garden chair that Dad sat on. Forming a crescent moon. That is how it became. We four women encircling Dad throughout the fight.

 

 “A day far too beautiful to be dying.”

 

When Kelly was diagnosed with early stage breast cancer, she told the doctors she was refusing chemotherapy. She had seen the side effects and heard the horror stories. Having recently been diagnosed with postpartum depression, she decided that any form of aggressive treatment would have broken her. Overweight, unfit and a smoker, is how she described herself at the time. 

Kelly was barely able to take care of herself, let alone complete normal daily tasks that required independence. She found that most of the natural alternatives suggested for curing cancer required drastic lifestyle and diet changes that she was not capable of. Her eating habits were erratic, she barely exercised and she found that trying anything new was near to impossible.

She received the news of her cancer while home alone with her 18 month old daughter. Instead of waiting for her husband to return home, she bundled her daughter into a pram and went for a walk on a farm near their home. The weather was clear and luminous. A day, she described as, “far too beautiful to be dying of cancer”. As Kelly listened to her baby girl’s nonsensical chattering, her skin warmed.

 

“I made a silent vow to myself that I would do everything and anything within my power to prevent my daughter from having to face this world without her mother by her side.”

 

Kelly watched a documentary called Run from the Cure: The Rick Simpson Story. The film follows Simpson’s discovery of cannabis oil as an alternative form of treatment for cancer, his struggle with legalising the substance in Canada, as well as, the founding of his website called Phoenix Tears. Testimonials of those who used Simpson’s hemp oil and are now cancer free, as well as free of other diseases such as arthritis, pain and allergies, are included in the film.

Simpson calls cannabis or hemp oil the most medicinal plant in the world.

 

“I’d like to see what hemp oil cannot cure.”

 

He says the reason for why pharmaceutical companies refuse to legalise cannabis oil is purely for profit. Hemp is a plant so companies would not be able to grant a patent. Simpson is shown in the film growing cannabis and producing the oil in his own home. He writes on his personal website, Phoenix Tears, that he has been openly providing people with instructions on how to make the oil for eight years. When he first started producing the oil, he was giving it out for free.

Simpson is openly against medicinal treatment of cancer. His belief is that chemotherapy and radiation kill the bad, as well as all the good inside a person.

“The more you spend on cancer, the more cancer you get…you are more likely to die sooner than if you had received no treatment at all.”

 

The Royal Canadian Mounted Police (RCMP) confiscated thousands of cannabis plants from Simpson’s garden and sentenced him to serve time. Simpson has since taken asylum in Europe.

“I am not afraid of their jails, but I cannot go without my medicine, the system has nothing that could help me with my conditions. So for me to return to Canada would be like committing suicide.”

Kelly soon had her hands on some cannabis oil. All she had to do now was ingest it. Her first dosage was half a grain of rice. The film recommended that every four days the dosage should double until one gram of oil can be taken per day. Kelly smeared the oil on to a small piece of bread, squished the corners together and ingested the bread as if swallowing a large pill.

“It had the consistency and colour of the spread Marmite, but it was extremely peppery and I was not fond of the taste.”

45 minutes later, Kelly described herself as feeling as high as a kite on Kilimanjaro. She felt flushed and dehydrated and could not control her amusement. Waves of giggles burst forth. After drinking copious amounts of water, Kelly lay in bed, begging for sleep to come while chains of thoughts flooded her mind.

The following day, she woke up feeling disappointed with how extreme her reaction had been, the night before.

 

“Having a toddler around means I have to be in the right state of mind at all times, I couldn’t afford to be high all day while looking after her.”

 

Kelly decided to halve the dosage and use the oil only at night so that the effects would not interfere with her daily duties. Over a month later, she managed to increase the dosage to a full gram. Within that time, she began to notice a change in herself.

“I began to feel like my old self, I began to laugh and smile, and even socialise a little.”

As Kelly continued using the oil, she began implementing further and healthier changes to her lifestyle. She began to believe in herself again, and started taking yoga classes to get her body into shape.

 

One year later, Kelly was given the news that she was cancer-free.

Today, her depression is under control, she is 20 kilograms lighter and she has stopped smoking.

 

“When I’m on the oil, I not only function as a sane and logical human being, but I am able to achieve amazing results within myself and my environment.”

 

Earlier this year, Member of Parliament, Mario Oriani-Ambrosini, submitted the introduction of the Medical Innovation Bill which will legalise the use of cannabis for medical, economic and industrial purposes. Ambrosini was diagnosed with stage-four lung cancer last year. He has not been smoking cannabis, but is using the oil for pain relief. He believes cannabis is the reason for why he is still alive.

“Chemo doesn’t cure.”David Gorski, Professor of surgery and surgical oncologist at the Barbara Ann Karmanos Cancer Institute in Detroit, Michigan is a critic of alternative medicine. He is the author of the blog, Respectful Insolence and editor of the website, Science-Based Medicine. Gorski is outspoken about his belief to only use evidence-based medicine to treat diseases.

He acknowledges that chemotherapy is often oversold and can be ineffective for some patients, however, believes it is the effective surgical therapy that patients have before proceeding with alternative treatment, which heals the person. Gorski says chemotherapy is not a cure, there is no cure for cancer, but medical treatment reduces the risk of reoccurrence.

 

“Medication is not natural.”

 

Jane, being a general practitioner herself, says she stands on a very thin line between medical and alternative treatment.

“I want to help the patient, but I sit with half chemo knowledge and half natural knowledge, so what do I do?”

As I enter Jane’s home, I am immediately confronted with a natural state of living. Swollen vegetables and tubers are packed into crates. A compost heap sits on the kitchen counter, used to fertilise the vegetable garden. The fridge is bare except for two large jars on separate shelves that seem to be holding different edible experiments.

“Kefir and home-made sauerkraut,” she tells me.

The one tastes like a thickened sour milk, the other stings my tongue because of the saltiness. Her pantry looks like something from a science lab. Not one label is in sight, except for the many bottles of red wine. A large root is floating in an orange, reddish liquid in the biggest jar in the pantry. Kombucha tea – good for the gut.

 

In Jane’s setting, cannabis oil is not a primary treatment, but rather used for pain relief or to increase appetite. When patients ask Jane about cannabis oil, she refers them to someone who sells it, but that is under the table because she knows little about it. Some patients have found it makes them violently ill. Some try it once and never again.

Last year, Jane developed a bursitis on her left elbow and was prescribed antibiotics. She developed a urinary tract infection that she described as being the worst one in her experience. That day, she swore off antibiotics for life. She believes the body can heal itself in a suitable environment.

 

But patients demand antibiotics. They say if she does not give the medication to them, they will get it from the next doctor.

The root of the word pharmacy comes from the Greek word “pharmakeia” which means drugs. Jane describes this as a word used in biblical times; the old way of doing herbal remedies. The word appears a few times in the New Testament and is translated in the English bible to mean witchcraft or sorcery.

“What we are doing now is not natural. Medication is mostly processed and a substance that essentially brings harm to the body. Antibiotics completely wipe out probiotics and the good bacteria in your gut. That is not an option at medical school, because natural is not medical.”

 

Dad was often approached by people selling herbal remedies, such as an aloe vera extract which apparently cured the seller’s ear infection. Another, told him to swim with dolphins because of the animals’ healing properties. 

He was offered an alternative treatment concerning high-dose Vitamin C shots, before considering chemotherapy. He refused, but the argument behind this method is similar to cannabis oil in that the testimonials are there, but the confirmation is not, because the treatment has no patent potential.

 

Jane describes how she is in a privileged position at her work place where money is not the primary principle. But she describes the medical world as a money game. The primary source of profit in private practices is the pharmacy, so the more medication sold the better. In terms of chemotherapy and radiation, that is where the money lies. Jane says chemotherapy companies twist the results and pay people off to have their drug win.

However, she says in the end it is all personal.  Not all doctors are malicious and money-driven.

 

“Some really want to help their patients and do believe that chemo is the only option. They will get angry, more out of frustration when patients do not want treatment, because this is a chance at survival.”

 

Jane says she would be torn if she was diagnosed with cancer, but her answer today is to go through with the natural route.

“When you are in that situation though, your flight and fight mode takes over and you just want to do whatever it takes to get better.”

She describes how it is a world unknown to everyone, but the oncologist is the one with the most knowledge. Natural options are typically, unfamiliar to them.  

“They might see the alternative as a patient sniffing some powder or doing some funny thing, seeing a traditional healer, and wasting their life. They are based entirely on statistics.”

 

“You’re cured!”

 

At the very last bone-marrow extraction Dad had given up. After hours of pleading by the doctor, he refused to remove himself from a wooden park bench perched underneath a sagging willow tree outside the oncology unit. My mother cried and begged for him to have the test, but to no avail. While watching TV on my parent’s custom-sized bed made to fit all five bodies of the family, I received the phone call.

 

“Please come down to St Dominics, your dad is refusing to have the examination.”

 

I drove thinking that my words would have no effect. A tiny bottle filled with mustard seeds and a homemade, felt toy lay on the seat next to me; two things Dad keeps next to his bed, each with their own sentimental value.

“I’m scared to go in,” he said. “I am worried that after everything they’re going to tell me it is still not over.”

My mother, the nurse, the doctor, Dad, and I stood in a room the size of a walk-in closet after a two-hour wait. Dad’s one hand clutched on to the toy, the other clutched mine. I watched the corkscrew enter his lower back. The nurse wiggled and grinded it so that it was deep enough for the perfect extraction. The results returned as unsuccessful and a few weeks later he endured the entire process again. “You’re cured”. He remained concerned. The cancer was no longer showing up, but the effects of it lingered. Even the “moth-eaten” bones took time to heal. The bruised, papery hands; the sores; the shiny head; the medicinal aroma; the strange taste of metal.

 

Check-ups are attended with apprehension. Every muscular ache or spasm is viewed as a warning sign of reoccurrence.  We can only hope Dad made the right choice.

 

*Names have been changed to protect the identities of the sources.