Warning signs to help improve early diagnosis of cancer in children

LINDSEY TAINTON, CANCER SURVIVOR

‘You have to pretend that it is always okay, even when it’s not.’

She was only fourteen years old when she was diagnosed with cancer, but
Lindsey Tainton’s experience was one that many adults would struggle with.
It involved six months of chemotherapy, throwing up, losing her hair and
fighting an invisible enemy. But Lindsey is not one for pity. As she puts it, she
simply got on with it.

It was a three-by-two-centimetre lump below her left jaw that alerted her
family to the fact that something was not quite right with Lindsey’s health. A
local GP reassured them that it was just her salivary glands that were blocked.

When treatment did not work, she went to another doctor for a second
opinion. ‘This was probably about three to four months after having it; it was
massive. When I opened my jaw it could be pushed out to the side,’ she
explains. The second doctor immediately booked her in for surgery and
removed the lump. Not long after, her family got the call to say that it was
stage-three lymphoma, which was affecting her lymph nodes from the groin
up.

‘I went in for chemo every two weeks for six months. What I remember is
that in the beginning it was fine and then near the end you start getting really
sick, minutes after the chemo goes in, you’re running to the bathroom to
vomit,’ Lindsey recalls. A small but energetic woman, she describes her whole
experience with an upbeat vigour. This is not a woman that you feel sorry for
and she would not have it any other way. ‘You just kind of suck it up and deal
with it. People come out of the woodwork and feel sorry for you and treat you
like you are going to die, but it was fine.’

Although only a teenager, Lindsey relied on a deep sense of faith during
her treatment and her Christianity became more solidified. ‘I think prayer
does have a huge place,’ she says. ‘You also just decide to live.’ Two weeks
before her last scan, Lindsey describes how she prayed and begged and
pleaded that everything would be fine and that everything would be clear.

‘You do need to reach for strength for yourself, and I think that was what
defined my faith and secured it. You don’t tell anyone else that you are
battling, even when inside you are falling apart, but you need somewhere to
go to regain strength and I think that was the role that faith played for me.

Two weeks before my last scan, I still had cancer and then my last scan, it was
all gone and that was eleven years ago. So there are miracles out there.’

At such a young age, diet was not something Lindsey was overly
concerned with. In fact, she would often eat takeaway burgers after
chemotherapy to replace the chemical taste in her mouth, as she knew she
would just throw it up later. ‘During chemo, chemicals start becoming very
strong. I used to drink herbal tea to get the taste out of my mouth and I don’t
touch it now because it just reminds me of the chemo … I stopped drinking
tap water, because for months afterwards all I could taste was the chemicals in
the water. Literally the more chemo you have, the more you can taste the
chemicals on your tongue.’

Lindsey refused to admit that she was losing her hair during treatment,
determined not to let the sickness get to her. She lost about two-thirds of it,
but never shaved it or made it noticeable. ‘It’s a mental game at the end of the
day. When my mom told me that I had cancer, I went into the bedroom and
hit the cupboard and then cried. And then that was it. I never got upset again,
because especially for your parents’ sake, you can see that they are worried
and you kind of want to shield them from that.’ It did take its toll on her
parents, defining their relationship with her in some ways, even though they
have never mentioned the ‘C’ word again. ‘We’ve never had a family
moment where we’ve spoken about what happened and how they felt about it,
because it was a survival instinct for everyone.’

If one is shocked or empathetic that Lindsey had to deal with such things
before she had even reached adulthood, she is indifferent. ‘When it happens
as a child, it’s normal. You’re in that period when if something happens you
just adapt to it. If something happened now, because I know so much about
it, I think I would be a lot more scared. When you’re a child, you don’t overthink
it. You just think that it is part of life and move on.’

The effects of the chemotherapy did not end with her cancer, however.

Lindsey’s chances of having children are at risk. As with everything, she takes
it in her stride, determined that she will simply cross that bridge when she gets
to it, with the same strength. She has yearly check-ups to ensure that her bones
have not been damaged by the chemotherapy and that she is not at risk of
leukaemia. As a youngster, she had been mildly affected by epilepsy, but the
trauma to her body during the cancer triggered petit mal seizures.

The epilepsy has dictated many aspects of her life since, far more than the
cancer ever did. Throughout the remainder of school and part of university
she was on various medications – some of which made her depressed and
tired to the point of not being able to go to class, and affected her short-term
memory. After years of struggling, however, she finally found a neurologist
able to help her. One of the first things she cut out was alcohol. ‘I don’t really
drink because it brings on seizures. I can drink whisky and I can drink vodka,
but if I drink wine then I get headaches. Everyone is different – for example I
need adrenaline to function. So they basically analyse that and then tell you
what you can drink and what you can’t drink, but generally alcohol is terrible
for epilepsy.’

Part of managing the illness is also exercising at least thirty minutes a day.
These changes have helped her to avoid seizures, but it took several years to
get to this point. ‘I probably haven’t been drinking for two years now so I
have a glass of wine every now and then. I had horrific hangovers at varsity
before I knew the effects of alcohol … I only started seeing [the neurologist]
later and then he explained everything. He is brilliant and showed me that diet
and exercise plays a huge role in that.’ It’s because of this that Lindsey stresses
the importance of going for second opinions and finding a doctor that you
are comfortable with, as you end up building a very strong relationship with
them. She points to the fact that her cancer was misdiagnosed and that she
battled for years to find a doctor who could help her manage her epilepsy. She
says that if her cancer had been caught earlier, she wouldn’t have reached
stage-three lymphoma. Speaking about the epilepsy, she says, ‘I also went to
two other neurologists before I found this one. They put me on things that
made me depressed and I forgot things and I kept going to them and saying
something’s wrong and they would say push through it. I missed school,
weeks of school because of medication I was on, I was just too tired to go to
school and they said I needed to push through it. There are some shocking
doctors out there.’

Her current neurologist’s suggestions to cut alcohol and exercise had not
occurred to Lindsey before. ‘Generally we are lazy people, we just do
whatever we want to. If it makes your life more difficult you are less likely to
do it. Having this knowledge though makes your life easier, so now things are
way clearer. If I exercise, I can concentrate for longer, work harder. If I don’t,
I start craving sugar, which is a sign that you need to do exercise because your
body is looking for that adrenaline rush. So my neurologist says if your body
starts craving sugar, it’s saying that it’s actually looking for that adrenaline
spike, so rather go for a run. So that’s just about assessing how your brain
functions.’

Lindsey’s way of eating has not changed much, as she explains that she
comes from a healthy family where vegetables and low GI are staples. ‘I
haven’t really had to make any changes because I don’t really have any bad
eating habits. Generally, though, it’s white meat, low-fat meat, low GI, those
kinds of things. That was the house I grew up in.’

Red meat is not something Lindsey would consider cutting out. ‘I think it
depends on the person and the body type and that kind of thing. You can’t
just have one rule for everyone. I do not think that I got cancer because I ate
red meat to be honest.’

While she has adopted certain lifestyle changes and habits, Lindsey says
she does not live in fear that her cancer might one day return. ‘When
anything can happen and did happen, you do create a world that is idealistic
and hopeful. When you did nothing to get cancer, you don’t have to worry.’
It is this that she has taken away from her cancer experience and allowed to
shape her life. ‘I live in hope regardless of what happens, which I think is
brilliant. I can’t say that anything bad came from having cancer.’

The experience also taught her to be more independent; she prefers her
own space rather than being dependent on a large group of people. ‘It was
because it was like I didn’t need anyone else’s help, like I could do it all
myself,’ she explains. Despite this sense of independence, her cancer altered
her relationship with her parents. She looks up at the ceiling as she tries to
explain. ‘They saw me differently; their perception about what children were
changed and our relationship became stronger as a result. They are still very
involved in my life in a good way, so we are a very close family.’

When she considers her cancer experience, Lindsey says she feels like she
has gone through more difficult things in her life. ‘Not having the job that I
want is emotionally crushing compared to something that I don’t even
remember. I think the physical is way easier to get over – this stage, our
twenties, is difficult. It’s a process of ten years where you’re fighting for what
you want and cannot have and it takes big balls to get through it.’ She adds
that she has never met anyone who has had cancer who is negative; in fact,
they are all excited about their lives.

It is her twenties that she is fighting for now, determined to find the job
she wants and settle into her life. Cancer is not something she thinks about
often. Lindsey just wants to focus on making today better than yesterday.

A NOTE ON DIAGNOSING CHILDREN

According to the Childhood Cancer Foundation (CHOC) one in 600 children
in South Africa is affected by cancer before the age of sixteen. If diagnosed
early enough, 70 to 85 per cent can be cured – promising news for parents
faced with such a scenario.70

CHOC has prepared a set of warning signs to help improve early
diagnosis of cancer in children. Called the Saint Siluan Warning Signs after a
Russian monk who prayed for humanity, parents are encouraged to keep a
look out for the following:

• Seek: medical help early for persistent symptoms.

• Eye: white spot in the eye, new squint, new blindness, bulging eyeball.

• Lump: abdomen and pelvis, head and neck, limbs, testes, glands.

• Unexplained: prolonged fever over two weeks, loss of weight, pallor, fatigue, easy bruising or bleeding.

• Aching: bones, joints, back and easy fractures.

• Neurological: change or deterioration in walk, balance or speech, regression of milestones, headache for more than a week with or without vomiting, enlarged head.71