Case Study Anatomy of an Oncologist - Janet

Highly Sensitive, Measurable Metastatic Breast Cancer

The extent of Dr. Blumenschein’s practice was very large and included over 2000 patients. Consequently, the spectrum of tumor activity in these patients was diverse and heterogeneous. At the most favorable end of the spectrum were patients with well-differentiated, slow growing,  and drugsensitive cancer clones in whom a  complete remission could be obtained with chemotherapy alone.

Janet, a 56-year-old administrative assistant, had been diagnosed with advanced primary breast cancer in her left breast. The cancer had metastasized to her lungs, liver, bone, and axillary and supraclavicular lymph nodes. Her primary physician was alarmed and started her on a course of FAC. She was ready for her second course of FAC when she was seen by Blumenschein. His physical examination indicated that she had already begun to respond to FAC. Her lungs were clear, her lymph nodes had regressed, and the mass in her left breast had vanished. Her liver had decreased in size and her liver function tests also had begun to improve. Staging studies confirmed these findings.

Therefore, Blumenschein continued the FAC regimen for a total of nine courses during which her bone lesions showed blastic healing. Subsequently, he elected to follow her at 3-month intervals for the next 5 years. At that point, follow-up visits were scheduled every 6 months. After 10 years, he saw her annually. Blumenschein considers Janet to have been cured, but because blastic healing of bone lesions occurs in the absence of radiologic change she is technically classified as being in stable partial remission rather than in complete remission.

Sedentary as Activity and exercise that CANCER TRIGGERS

Activity and exercise

There is a lot of evidence to suggest that activity and exercise play a role in good health. But how many of us are regularly putting on our training shoes?

The WCRF and the AICR found that in South Africa for the period 2002/03, 44 per cent of men and 49 per cent of women between the ages of eighteen and sixty-nine were classified as sedentary. A ‘sedentary’ lifestyle is characterised by much sitting with little or no daily physical activity. This means that almost half our population is not exercising regularly, contributing to rising levels of obesity. ‘Although under nutrition remains a problem among rural children, obesity and associated diseases are also prevalent. There has been a misconception of “benign obesity”: being thin is associated with HIV and AIDS, and moderately overweight women are thought of as attractive and affluent.’

Inactivity is not just a South African trend. Generally, physical activity has been declining globally since the seventies, as household work has become more mechanised and vehicles are used more often for transport. Even though the WHO recommends at least thirty minutes of physical activity on most days, at least 60 per cent of the world’s population are not meeting these recommendations.

Exercise is important for overall health not just because it helps maintain body weight, but also because it helps to control factors like blood pressure. In addition, Mat says, ‘exercise also helps you to connect with your body. When you exercise you can feel when your body is more tired or if there is a distinct pain somewhere.’

As we have seen, obesity and being overweight is a big factor when it comes to environmental causes of cancer. Exercise can therefore also be very beneficial for the prevention and treatment of cancer. The Copenhagen Male Study, for example, headed by Dr Inge Haunstrup Clemmensen from the Cancer Foundation in Denmark, has significantly contributed to evidence that exercise can help prevent cancer. It studied over 5 000 men over twentythree years and showed that immune centres were strengthened by moderate physical exercise, thus preventing the growth of cancer. It also showed that exercise helped prevent intestinal cancer, cancers of the digestive tract and oesophageal cancers.

The Queensland Cancer Council also singles out physical activity as a vital factor in maintaining good health. It recommends just thirty minutes of moderate-intensity activity every day by thinking of ovement as an opportunity, rather than an inconvenience, and making a habit of walking or cycling rather than driving. It also suggests incorporating some vigorous exercise into daily physical activity for extra health and fitness.

The South African organisation People Living With Cancer (PLWC) 19 also recommends regular physical activity, based on research done by the ACS, which suggests that regular physical activity is associated with reduced risk of several cancer types. Although the impact of physical activity on the prognosis of people with cancer is less clear, increased levels of physical activity can improve overall quality of life and result in less fatigue, lower levels of anxiety, increased energy and a renewed sense of vitality. PLWC encourages cancer patients and their families to engage in moderate regular physical activity, defined as activities that make a person breathe as hard as they would during a brisk walk, such as walking, biking and swimming, as well as working in the garden and brisk house cleaning. If a cancer patient is confined to bed rest or is unable to do thirty minutes of activity a day, it is recommended that limited physical therapy is initiated. However, the patient’s performance status and physical ability should be considered and no pressure should be placed on really ill patients.

Concluding Thoughts — Where Do We Stand in the Quest for the Cure?

Concluding Thoughts — Where Do We Stand in the Quest for the Cure?

Where do we stand on achieving our goal: CURE in a reliable, repetitive fashion? What we have learned is that drugs are important in treating breast cancer and that combinations work better than single agents.

There have been cures resulting from adjuvant chemotherapy since its introduction by Cooper. Bonadonna began treating microscopic breast cancer in the 1960s. Buzdar's introduction of Adriamycin in the MDA FAC program in 1973 materially improved the chance for a patient with microscopic disease to clear her body of cancer.

Dr. Nabholtz is to be congratulated for his recognition of the superiority of TAC for induction and the need for it to replace FAC as induction adjuvant therapy.

There is a continuing need for improved consolidation adjuvant regimens in order to eradicate the microscopic tumor burden that remains after initial adjuvant therapy. CDDP, etoposide, and mitomycin
C should be used in combinations, such as MCCFUD and FUMEP, only when other options have been proven less active.

There is a need for new drugs and combination chemotherapy regimens to be developed. Targeted molecular therapy is touted as the way of the future. At present, HER21 patients have the option of using a very expensive drug regimen that incorporates Herceptin and Navelbine. However, will insurance companies be willing to pay for similar targeted therapies and, if not, will we be able to afford them?

CHEMOTHERAPEUTIC PRINCIPLES THAT HAVE EMERGED

• Future trials should be designed to emphasize tumor eradication and should not focus on questions that have already been answered.
• Multimodal regional therapy should be used as aggressively as possible. Decreasing the tumor burden in patients with metastatic cancer should improve chances of achieving a complete remission with
TAC induction adjuvant programs.
• If a new drug program shows superior efficacy, don’t let attachment to a previous favorite be an obstacle to adopting it. Recall the long delay before Adriamycin was incorporated into breast adjuvant therapy and the continued use of inappropriate or suboptimal combinations and schedules of Adriamycin (e.g., FAC-lite).
• The absence of measurable metastatic cancer creates a dilemma. Probably the best solution is to frequently monitor the patient and her tumor markers.
• Toxicity, especially irreversible damage, should be avoided if possible. The persistence of Adriamycin cardiac toxicity represents a major oversight on the part of medical oncology. Adriamycin should be given only by continuous infusion over 48 96 h. This necessitates placement of a permanent central venous catheter.
• Not all resistance that develops in some cancer clones is permanent, as evidenced the return of Adriamycin sensitivity in some cancers that initially became resistant to this drug.


PATIENTS HAVE AN IMPORTANT ROLE

Patient empowerment through education will play an increasingly important role in improving treatment outcomes. To that end, the following can be recommended:
• Do not hesitate to request a second opinion.
• A patient should ask her oncologist about the best route for cure. If the oncologist were in the patient’s place, which treatment would they choose?
• Beware of waiting for a regimen or treatment to reach statistical significance in a clinical trial before accepting it if there is an intellectual pathway or compelling information to move ahead.
• Do not accept truncated or overly simplified regimens that may sacrifice therapeutic efficacy (e.g., FAC-lite).

Finally, it is important for everyone who is involved in the struggle against breast cancer to remember that the goal of treating breast cancer patients is cure. For the time being, all we know is that complete
remission is the doorway to cure, and a prolonged complete remission usually is cure.

Based on Buzdar's data, the 10-year survival rate for patients with metastatic breast cancer has increased three-fold in the last six decades. However, survival did not increase significantly until Adriamycin was introduced as FAC adjuvant therapy (Data kindly provided by Aman Buzdar.)

The ongoing impetus for change in the cancer field is described

Where Do We Go from Here?

The ongoing impetus for change in the cancer field is described.

One of the basic tenets of clinical medicine is to do no harm. This presumes that the role of physicians is to aid the natural, life-sustaining forces of our bodies and minds in dealing with illnesses and injuries that impair our health. As examples, surgeons rely upon our bodies’ capacities to heal, and primary care physicians rely upon our bodies’ capacities to fend off infections after antibiotics have reduced the number of offending bacteria.

If we lose the capacity to heal naturally because our immune systems are overwhelmed, such as by drug-resistant viruses, bacteria, cancer or AIDS, we die. In other words, physicians do not cure any disease or fix any injury without relying upon our bodies’ natural defenses. The “search for cancer and destroy it” model of oncology is not based on this fact and actually harms the body’s natural defenses.

This is the fundamental flaw in the conventional approach to cancer as if it is a disease in itself…get rid of cancer cells, and you cure cancer.

In order to think clearly about the way health care should work, the field of public health employs the concepts of primary, secondary and tertiary prevention. Primary prevention is preventing a disease or harm from occurring in the first place.

Secondary prevention is treating a disease or harm. Tertiary prevention is minimizing the disability from a disease or harm.

In applying the public health approach to cancer, oncology employs primary prevention by identifying genetic and environmental factors that contribute to developing cancer, such as smoking, air pollution and toxic food contents (prevent neoplasia). Secondary prevention is employed in treatments that aim to cure cancer (stop neoplasia). Tertiary prevention is managing the course of cancer (slowing down neoplasia and palliative care).

Clinical oncologists are largely engaged in tertiary prevention because there is no cure for cancer as such. For example, the surgical removal of a tumor does not ensure that cancer will not recur. Chemotherapy aims to prolong survival from cancer. As an example, Vemurafenib was one of the first treatments for melanoma. It can cause tumors to shrivel within weeks. Unfortunately, continual mutation of the tumor creates resistant cancer cells, and most tumors rebound between six and nine
months later.

Paradoxically, according to Meghna Das Thakur of the Novartis Institutes for Biomedical Research, in Emeryville, California, if cancer cells evolve with resistance to the chemotherapy being used to treat it, withdrawing that drug can sometimes stop the cancer in its tracks as effectively as the chemotherapy did in the first place.1 This is because stopping the drug also stops suppressing the immune system, which then can destroy the newly mutated cancer cells that are unable to evade it as did the original cancer cells. In fact, this is the explanation for long-term remissions after chemotherapy…the immune system takes over and stops or restrains neoplasia. Believing that the chemotherapy drug did it all by itself is a dangerous fantasy.

Unfortunately, the many forms and the refractory nature of cancer have made it difficult to think clearly about principles to guide research that will have a significant impact. Fortunately, progress has been made in primary prevention that actually is the main reason for the decreases in cancer rates. Examples are smoking cessation programs that have reduced lung cancer and human papillomavirus vaccination that has reduced cervical cancer in women and oropharyngeal cancers in men. However, the knowledge that we have about how cancer cells develop and spread through neoplasia has not been given a high enough priority in secondary prevention clinical practice.

What You and I Can Do - How Can We Win the War on Cancer?

What You and I Can Do

My effort to change the cancer care system is evident in this book. I also take every chance I have to inform others about the way that cancer affects all of us. Your own interests, talents and contacts offer opportunities to share your personal experience and efforts as well.

If you are so inclined and able, participating in any of the organizations mentioned in this book will offer you chances to both inform others and to learn more about cancer yourself. If you are reluctant to talk about your own experiences, please think twice. Again, everyone is affected by cancer, and your disclosures may help others to talk about their experiences.

At the very least, bear in mind that you have elected representatives who are more interested in input from their constituents than most people realize. Your most direct connection is with your Congressional Representative and Senator. These persons will respond to your communication about your personal situation and about your desire to focus more federal attention on cancer care and research. You can send that person copies of articles or books that express your views, and, if possible, direct attention to relevant current issues. You can make contact with your Representative through http://www.house.gov/representatives/find/ and your Senator through http://www.senate.gov/general/contact_information/senators_cfm.cfm.

If you mention your interest in advocacy for winning the War on Cancer to your doctors, they may well have more specific suggestions for you.

Conclusion

Once again, the traditional focus on killing cancer cells puts the cart before the horse and explains why our conventional treatment of different forms of cancer has and will continue to lead us to a dead end in the War on Cancer.

We have lost decades of potential progress against cancer. Public understanding of the situation and pressure for change is needed to point cancer research and care in a preventive and curative direction by supporting and funding the initiatives of the American Association of Clinical Oncology and the Director of the National Cancer Institute that focus on the process through which cancer cells develop— neoplasia.

It is up to Congress to intelligently and effectively provide adequate funding that is not dictated by the financial incentives of industry lobbyists and the unrealistic regulation and conduct of clinical trials but by the goal of preventing and treating neoplasia.

empowering yourself with knowledge about eating clean, nutrition and your type of cancer, and by consulting a dietitian or nutritionist, you could change your life.

‘You are not only the patient but also the customer, you are paying for treatment and if
you are not feeling like you are being heard, if you have questions that are not being
answered or you don’t feel that the treatment is the right option for you, go and get a
second opinion.’ – NATHALIE MAT, DIETITIAN

For many of us, the word ‘cancer’ leaves us with an uneasy feeling. It brings
to mind death; our own or that of a loved. A million thoughts race through
our minds. Diet is unlikely to be one of them. And that is okay. These things
take time.

TAKING YOUR TIME

Dietitian Nathalie Mat explains that often cancer patients, or the parents of
children with cancer, need some time and space before undergoing further
counselling like a nutrition assessment. ‘The diagnosis can be such a shock
that one is too busy trying to process what the diagnosis means to hear
anything else being asked or said. It is very important that the healthcare
providers of cancer patients do not overload the patient with information in a
single session, as there is often too much information to get across in one
sitting,’ she says.

It is a frightening process, and so Mat advises first having your cancer put
into perspective by a health professional and asking as many questions as you
want. Sometimes you just need someone to tell you what to expect or what
treatment will be like. The health professional’s role is not only to help you
make decisions about your treatment, but also to help you with manageable,
realistic and feasible lifestyle changes, like dietary changes, tailored specifically
for you and your type of cancer.

Avoid Googling your type of cancer, however, as the information on the
Internet is often unreliable and incomplete. Rather consult different health
professionals, from your GP to your surgeon and oncologist. Mat
occasionally comes across patients who feel uncomfortable with their current
doctor, but who are afraid to do anything about it because of how serious
cancer can be. ‘At the end of the day, it is your body that is being treated by
doctors and surgeons, so you need to be comfortable with it. That sometimes
means taking a bit more time to understand treatment options and their
consequences, and getting informed so that you feel okay with each step. I
think it is an incredibly personal process.’

Support from loved ones makes a massive difference during treatment and
recovery. Mat advises loved ones to give cancer sufferers a lot of affection and
personal touch, as it can be a very isolating disease.

NUTRITION AS MEDICINE

Over a decade ago, South Africans were already looking at how food-based
dietary guidelines (FBDGs) could play a role in preventing and treating
disease. In 2001, an editorial in the South African Journal of Clinical Nutrition
stated: ‘South African nutritionists have an advocacy role in ensuring that
these FBDGs receive sufficient media and political exposure to be
incorporated into health policy. But they also have an educational role in
ensuring that all professionals in public health understand the potential of the
guidelines to help improve dietary intakes, nutritional status and health, and
in the prevention of diet-related diseases.’81

The concept of diet as a form of treatment is not new. We have all come
across the proverb, ‘an apple a day keeps the doctor away’, at some point in
our lives. Famed inventor Thomas Edison even once famously remarked:
‘The doctor of the future will no longer treat the human frame with drugs, but
rather will cure and prevent disease with nutrition.’

As we have seen, many factors contribute to illnesses like cancer, especially
in modern society. However, as knowledge and information around nutrition
becomes more prevalent, especially in the South African context, individuals
have more control and power over their own health and healing. If you are
not enamoured with the idea of going raw, vegetarian or vegan, the South
African FBDGs is a useful and beneficial starting point for adopting a
healthier way of eating:

• Enjoy a variety of foods.

• Be active.

• Drink lots of clean, safe water.

• Make starchy foods the basis of most meals.

• Eat plenty of vegetables and fruit every day.

• Chicken, fish, meat, milk or eggs can be eaten daily.

• Eat fats sparingly.

• Use salt sparingly.

• Use foods and drinks containing sugar sparingly and not between meals.

• If you drink alcohol, drink sensibly.

By using the tools available to you and empowering yourself with knowledge
about eating clean, nutrition and your type of cancer, and by consulting a
dietitian or nutritionist, you could change your life. As the ancient Greek
physician Hippocrates said, ‘Let food be thy medicine, thy medicine shall be
thy food.’

According to Cancer Research UK, cancer survival rates in the United
Kingdom have doubled in the last forty years. In fact, half of the people
diagnosed with cancer now survive the disease for at least five years.

Furthermore, almost three-quarters of children with cancer are now cured of
the disease, compared with around a quarter in the late 1960s.82
These kinds of statistics are not available for South Africa, but global
trends give a lot of hope. Cancer is no longer a death sentence. The studies
and research being conducted show an abundance of ways to take charge of
your disease and fight it.

Unfortunately, we will never really know why some people die from
cancer and others do not. Carrie Brown was a cancer sufferer who eventually
died, but not before putting up a good fight and making sure she left behind a
legacy in the form of her beautiful young son.

This book is part of her legacy too. My fond memories of Carrie have
given me the strength, hope and motivation to write a book that might
possibly provide some help and guidance to others like her when it comes to
eating well and nurturing the body. By including other people’s stories and a
few ideas about how to incorporate the most nutritional foods into your diet,
I hope that your journey is that much more wholesome – whether you are
aiming to prevent or treat cancer. Carrie believed that we were all put on earth
to serve a purpose. Not only did she serve many beautiful purposes
throughout her life, but she continues to do so in her afterlife.

How to CANCER PREVENTION

‘To keep the body in good health is a duty … otherwise we shall not be able to keep our mind strong and clear.’ – BUDDHA

The WHO believes that over 30 per cent of cancers are actually preventable
and that, regardless of resource levels, all countries can implement the four
basic components of cancer control – prevention, early detection, diagnosis
and treatment, and palliative care – and thus avoid and/or cure many
cancers.76 We have already seen that by educating ourselves and ensuring
regular check-ups, early detection is possible. And diagnosis, treatment and
palliative care are sectors that are well established in South Africa. But what
about prevention?

The WHO suggests that cancer prevention starts with not using tobacco,
following a healthy diet, being physically active and moderating the use of
alcohol. According to The China Study, in which T. Colin Campbell and
Thomas M. Campbell II present their intensive research into the link between
diet and common illnesses like cancer, diabetes and heart disease, asserts that
plant-based diets have been scientifically proven to benefit human beings
around the world. This research is significant, considering that the ACS
recommends individuals consume a healthy diet with an emphasis on plant
foods, limiting their consumption of processed meat and red meat.77

What can we conclude from this? Obviously, maintaining a balanced
lifestyle and a healthy way of eating, where one includes as many fruits and
vegetables as possible, is logically a better way to live, lowering your chances
of developing all sorts of diseases as well as ensuring your dietary intake is
made up of a lot of vitamins and nutrients. With smoking responsible for 22
per cent of cancer deaths in the world,78 it is also fair to suggest that cutting
back on habits such as this is a good idea.

We are taught about food pyramids at school and reminded by our
parents to eat our vegetables, but how often do we significantly factor this
information into our daily lives? My friend Kerry, who has witnessed
firsthand how a person’s body can deteriorate says, ‘I always thought that I
could eat what I wanted to a certain degree because I danced a lot and played
sport at school. I met someone in 2008, however, who introduced me to gym
and showed me how eating clean could change your body and how you felt. It
was during this period that I started to understand how your body reacts to
things that you put in it. For example, after eating clean for a while and then
eating gluten or having lots of sugar, I could feel how my body would disagree
with it and how it could even alter my mood.’ While Kerry would not call
herself a fanatic, she now reads labels and stays away from breads, sugars and
processed foods. ‘I started thinking more about what I put in my mouth. I
now understand that your body is a machine and you need to feed it the right
foods to keep it working well. I think I always knew the basics of healthy
eating, but I only chose to enforce them a couple of years ago.’

The WCRF and AICR’s Food, Nutrition, Physical Activity, and the Prevention
of Cancer: A Global Perspective, concludes that, while smoking, exposure to
tobacco, infection, infestation, solar radiation, food and nutrition, physical
activity, body composition, and various other factors are all causes of cancer,
‘food and nutrition, and physical activity can protect against cancer.’79 Ergo,
we can choose ways of living that will protect both ourselves and the next
generation from getting cancer.

The same report summarises the most common types of cancer and lists
foods that research indicates may help protect one from getting that particular
cancer:

Bladder cancer  ==>> milk

Cancer of the mouth, pharynx, and larynx  ==>> non-starchy vegetables, fruit and foods containing carotenoids

Cervical cancer  ==>> carrots

Colorectal cancer  ==>> Foods containing dietary fibre, folate, vitamin D, selenium and calcium, garlic, milk, non-starchy vegetables, fruit and fish

Endometrial cancer  ==>> non-starchy vegetables

Kidney cancer  ==>>  fruit and vegetables rich in antioxidants and phytates

Liver cancer  = =>> fruit

Lung cancer  ==>> non-starchy vegetables, fruit, and foods containing selenium, quercetin and carotenoids

Nasopharyngeal cancer  ==>>  non-starchy vegetables and fruit

Oesophageal cancer  ==>>  non-starchy vegetables, fruit and foods containing beta-carotene, vitamin C, dietary fibre, folate, pyridoxine and/or vitamin E

Ovarian cancer  ==>>  non-starchy vegetables

Pancreatic cancer  ==>>  fruit and foods containing folate

Prostate cancer  = =>> pulses (legumes), including soya and soya products, and foods containing vitamin E, lycopene and selenium

Skin cancer  = =>> foods containing retinol (vitamin A)

Stomach cancer  = =>> non-starchy vegetables, specifically allium vegetables, as well as fruit, pulses (legumes), soya and soya products, and foods containing selenium

Breast cancer is an interesting case. Instead of specific foods, the report cites
‘life events’ that protect against breast cancer. These include late menarche,
early pregnancy, bearing children and early menopause, all of which have the
effect of reducing the number of menstrual cycles and therefore lifetime
exposure to oestrogen. The reverse also applies. Furthermore, there is
evidence that lactation and exercise protect against breast cancer at all ages. In
any event, the report recommends taking into account factors that modify the
risks of body and abdominal fatness, including physical activity, the energy
density of foods and drinks, and breastfeeding. This last point applies to
prevention of all forms of cancer.

EAT TO LIVE

While science strives to come up with the hard evidence, we would do well to
consider the role of our diet in cancer prevention. Obesity and unhealthy
eating are signs of an ‘unclean’ life, and are thus bound to have an effect on
cancer initiation and promotion.

‘Diet is a really important component of cancer prevention,’ says dietitian
Nathalie Mat. ‘Eating too much food is the primary reason people are
overweight and this is a direct consequence of diet. Being overweight
generally increases your risk of developing cancer. One’s diet can [therefore]
increase your risk of getting cancer. For example, a diet high in red meats and
low in dietary fibre increases your risk of developing cancer. High alcohol
intake increases your risk of certain cancers, especially the cancers of the
upper gastro-intestinal tract.’

Ernest Hawk, from the University of Texas MD Anderson Cancer Center,
maintains that the risk of cancer can be eliminated through proper nutrition,
physical activity and maintaining a healthy weight across your lifespan. ‘We
know what to recommend in broad terms for most people in the population,
but not always the specifics of a highly tailored or personalised “prescription”
for every individual.’ In other words, while ongoing research suggests that
dietary choices and physical activity do have a significant impact on
treatment and survivorship in terms of improving quality of life and overall
health, as well as diminishing side effects and symptoms, scientists are not
able to provide a general one-size-fits-all diet and accompanying ‘rules’ for
eliminating cancer risks. Hawk explains: ‘Diets are extremely varied and
complex within and across individuals especially over time. The vast variety
of different types of cancers and important cancer-associated outcomes also
create a challenge. Therefore, current recommendations are relatively broad
and apply to the general public.’ As we have seen, the broad
recommendations include increasing fruit and vegetables to at least five
servings a day, increasing whole grains, limiting red or processed meats and
salt, balancing calorie intake with expenditure to maintain a healthy weight,
and doing at least fifteen minutes of vigorous physical activity or thirty
minutes of moderate-intensity exercise per day at least five times a week.

While these may be general suggestions, Hawk says the point is that we do
know how to reduce the risk of cancer by at least 50 per cent today – by
adopting healthy lifestyles, having the recommended vaccines and undergoing
the recommended evidence-based screening tests.

AVOIDING CANCER

Cancer is an unforgiving disease that often takes its time breaking down our
health and our bodies. Recovery can be a very long process. The fear of
getting sick, of facing a premature death, is something that haunts many of us.

This fear can be so consuming that it can even provoke an individual to go
to extreme lengths to avoid cancer’s wrath. Allison Gilbert is one of many
who have undergone preventative surgery to lower their chances of getting
cancer.

‘I’m not a helicopter parent and my children would tell you I don’t bake
cupcakes for their birthday parties. But I’d readily cut off my breasts for them
– and recently I did,’ says Allison, the author of Parentless Parents, Always Too
Soon and Covering Catastrophe, who has been featured on CNN and a range of
other news stations and websites.

The double mastectomy, which she had done in 2012, took eleven-and-ahalf
hours and she does not regret a second, despite the long road to recovery.
She went on to have new breasts made out of her stomach fat so that she
would not have to get implants.

‘The decision to have surgery without having cancer wasn’t easy, but it
seemed logical to me. My mother, aunt and grandmother have all died from
breast or ovarian cancer and I tested positive for the breast cancer gene. Being
BRCA positive means a woman’s chance of developing breast and ovarian
cancer is substantially elevated.’

When weighing up the statistics, Allison learnt that patients with BRCA1
or BRCA1 mutations have a 50 to 85 per cent lifetime risk of developing
breast cancer, where the rest of the population only has a risk of around 13 per
cent. She also found out that the gene means a 60 per cent chance of ovarian
cancer. ‘At my gynaecologist’s urging, I tackled the threat of ovarian cancer
first. Because the disease is hard to detect, so often fatal, my ovaries were
removed in 2007, a few years after my husband and I decided we were done
having kids.’

It was not an easy decision and she had to deal with the repercussions,
including going through menopause at the age of thirty-seven. Less than a
year later, her aunt was diagnosed with breast cancer and died within four
months. ‘Aunt Ronnie’s death set me on a preventative mastectomy warpath.

I had already been under high-risk surveillance for more than a decade, being
examined annually by a leading breast specialist and alternating between
mammograms, breast MRIs and sonograms every three months, but suddenly
being on watch didn’t seem enough and I began researching surgical options.’

It was a concept that she thought about over many years, torn between the
anxiety of surgery and the threat of cancer. She eventually underwent the
double mastectomy on 7 August 2012, but it had been a stressful journey
getting to that point. ‘The worst moment came one night when my husband
and I were in bed. I began to cry uncontrollably and wished I could talk with
my mother and aunt about which procedure to have, which doctor I should
choose and whether I should even have the surgery. Then a moment of
bittersweet grace clarified what I needed to do. It struck me that the reason I
couldn’t speak to my mother and aunt was exactly the reason why I had to
have the surgery.’

Allison is convinced that if she had not had the surgery, she would have
been one of the estimated 226 000 women that according to the ACS are
diagnosed with invasive breast cancer each year. ‘I could have tried to eat my
way to a cancer-free life, but even Dr T. Colin Campbell, author of the
popular vegetables-are-key-to-health book The China Study admits diet may
not be enough to protect BRCA patients from cancer.’

Her rationale by the time she came to have the surgery was simple. She
was not willing to bank on a future miracle cure or drugs, or even statistical
evidence, that her lifestyle choices may help lower her risks. ‘Every surgery
substitute seemed locked in hope, not statistics. And as I’ve told my husband
and children, I wasn’t willing to wait. I love them more than my chest.’

TAKING CONTROL

Allison and others like her have taken extreme measures. You must do what is
right for you. Taking control of your health is a good first step, and maybe
the only step you will need to take. Nutrition can provide a valuable basis for
good health, but you need to adopt healthy habits in every aspect of your life.

Cutting down your alcohol intake, monitoring your stress levels, quitting
smoking, protecting yourself in the sun and ensuring that you get the right
amount of exercise all play a crucial role in protecting yourself against illness.
For a start, try to focus on the following:

• Body fat – Be as lean as possible within the normal range of body weight.
• Physical activity – Be physically active as part of everyday life.
• Foods and drinks that promote weight gain – Limit consumption of energy-dense foods and avoid sugary drinks.
• Plant foods – Eat mostly foods of plant origin.
• Animal foods – Limit intake of red meats and avoid processed meats.
• Alcoholic drinks – Limit alcoholic drinks.
• Preservation, processing and preparation – Limit consumption of salt, and avoid mouldy cereals (grains) or pulses (legumes).
• Dietary supplements – Aim to meet nutritional needs through diet alone.

AND REMEMBER: PREVENTION IS ALWAYS BETTER THAN CURE.

how important it is to have the support of friends and family while going through cancer

CHRIS WEISS, CANCER SURVIVOR

‘They say that you are what you eat. So why would you want to eat badly?’

For young cycling-enthusiast Chris Weiss, 2004 marked the beginning of
everything. He had just finished high school in Grahamstown and was taking
a gap year, working in the UK. ‘I was a rock-star eighteen-year-old,’ he says
with a smile.

Feeling invincible and ready to take on the world, Chris found a job at a
school in Brighton and made up his mind to travel around Europe when he
could. It was during one such trip – a contiki tour – that he experienced his
first crippling headache. ‘When I got back to London, I had a second massive
headache,’ he explains, a pain that he has relived many times since. ‘My
parents happened to be in London at the time and said that I needed to go
and get it checked out. I went to a GP and then had an MRI scan. The scan
was clear, but as a precaution, the GP did a full-body routine check. It was the
luckiest thing that ever happened to me because, while he was doing the fullbody
physical, he picked up a lump in the right testicle.’

Relieved that the MRI scan was clear, Chris only half-heartedly
acknowledged the doctor’s advice to have his testicle scanned. ‘Being eighteen
and on my gap year and loving life and partying hard and living in Brighton,
I didn’t book the scan for a while. Eventually I did, but I wasn’t that worried.
I was worried when they were doing the MRI scan because I had never
experienced a headache like that in my life.’

Through the British National Health Service (NHS), Chris would have
had to wait three months to have the scan. His father, unhappy with such a
long wait, suggested he go and do it privately with the emergency credit card.

‘I went and had the scan privately and at this stage, I didn’t really think
anything would be wrong. I cruised off to have it on my own, I didn’t tell any
of my friends, I didn’t even tell my sister, who was living in London at the
time, that I had booked it. My dad knew that I was going at some point but
didn’t know when.’

Nonchalant and independent, Chris took a bus one afternoon after work
to the doctor. He was shown down to the radiology department in the
basement and sat uncomfortably as an ultrasound machine scanned his
testicle. The doctor simply said, ‘There is something here and it’s definitely
cancer,’ before leaving him to put his clothes on. Chris was taken aback. ‘He
didn’t sit me down or break it to me softly; he just kind of blurted it out like
that.’

Panicked and frightened by the information the doctor had so glibly
passed on, he tried to phone his sister but could not get through because he
was in the basement of the radiology department. He ran up the stairs and
tried calling her about six times before she finally answered. He told her that
he had had the scan and it was cancer. The word sounded foreign on his
tongue.

The doctor then sat him down to discuss his options. Alone and in an
unfamiliar and uncomfortable room, Chris’s thoughts were racing. The
doctor told him that the NHS could operate within forty-eight hours, ironic
considering they had wanted him to wait three months for the initial scan.

His advice, however, was to go back to South Africa and have the operation
at home. It was a fast-moving cancer, and so they would need to act quickly,
but it was also highly treatable.

Chris left the doctor’s office feeling lost. He phoned his sister again, who
told him to go back home and wait for her there. He then phoned his dad.

‘He was quite calm on the phone, but only months later it came out that he
had just got home from spinning when I had called. He was in his early sixties
at this stage and he walked into my parents’ living room – my other sister was
doing marking on the floor and my mom was sitting on the couch – and
apparently he walked in and just couldn’t talk. My mom thought that he was
having a heart attack.’

Chris’s next thought was to call his housemate Ricky, but he was not
answering his phone. In the meantime, he headed home in a taxi, too
overwhelmed to fight the throngs of people on the bus. As he got home, Ricky
was making his way out of the school dining hall. The news spread like
wildfire as the two headed home and soon visitors were flooding in, including
Chris’s boss and the headmaster of the school. ‘It started spreading and
everyone just started arriving. I didn’t speak to anyone, people had just
heard.’ His sister and her husband arrived soon after and suggested that they
take him back to London. ‘At this stage, it didn’t dawn on me that I would be
able to come back. I thought I was going home for good and so I said that I
had to say goodbye to everyone before I came up to London.’ He went to bed
that night, prepared to leave the UK for good the following day. He cannot
remember if he slept, but he does remember that Ricky and another friend and
housemate slept in the room with him.

While saying his goodbyes the following morning, Chris learnt one of the
greatest lessons of his cancer experience – the support and comfort of friends.
Five of his friends spontaneously decided to travel to London on the train
with him and then on to Hammersmith where his sister would collect him. It
was extremely comforting for Chris, and distracted him from his darkest
thoughts. It was only when he got into the car with his sister and her husband
that he had a moment to think, and he was not quite sure what to do with the
information or how he should be feeling or reacting.

He asked his brother-in-law how he should tell his friends back in South
Africa. ‘I said to him, “It’s quite hectic to tell people that I have cancer, I feel
fine.” And he told me that the only way I was going to deal with it was if I
was chilled about it and told people the truth – that it was cancer.’

The loneliest part of his cancer experience was when he had to leave his
sister and her husband at Heathrow Airport to begin his journey home. ‘It
was the hardest thing that I’ve ever done because then it was eleven hours on
my own. My sister says it was one of the hardest things she had done, letting
me get on the plane alone. I was suddenly on my own and I was totally
isolated. I couldn’t pick up my phone to speak to anyone.’ Moreover, he
would see his father cry for the first time in his life upon his arrival.

When he arrived in Johannesburg, Chris was whisked straight to the
doctor. They operated the very next morning and he was out by lunchtime. ‘I
was sitting at the dinner table again that night; it’s not a very hectic operation
at all. So they have taken it out and now you’re waiting for results because
they’re doing biopsies and you’re wondering if it’s spread.’ The family were
anxious and agitated, hoping for the best and fearing the worst.

It was at this point that they started researching testicular cancer: what he
should be eating, survival rates and consequences if the cancer had spread.

‘There is just so much information and you don’t know what to believe and
what not to believe,’ Chris explains. ‘Everyone has their titbit of information
and, while it is appreciated, this info, together with the myriad of
information on the web, it’s just an overload.’ Crippled by fear and faced
with a mountain of data, it is no wonder that many cancer patients have no
idea where to begin when it comes to lifestyle, health and dietary decisions.
For a break, Chris and his family decided to go away for the weekend. At
this stage, all they knew was that the neurology results were clear.

After a restless weekend away, Chris went to see the oncologist on the
Monday morning. Everything was clear. That was it. And yet that had been
everything.

‘So I had this whirlwind experience, which was about ten days in total … I
hadn’t felt anything except for the operation, which was a small cut and
healed quickly. I had never felt sick and suddenly I was told I was better. That
was literally the end of it and it was so bizarre from that perspective, because
you’ve gone through this life-changing event.’

It took a while for the news that he had recovered without having to
undergo any radical treatment to sink in. Chris had been building up for a
fight, for treatment, and suddenly there was nothing. ‘While it was nothing,
because it was only ten days and I would never wish it on anyone because it
was a pretty shit ten days, it taught me more than any other ten days in my
life. It taught me more than I ever could have learnt at school or university.’

Initially, he had to undergo CT scans every two months, then every four
months, then every six months and now only once a year.

The value of friendship and support was one of the resounding lessons.

One friend had phoned him every day for three weeks from the UK on a
student budget. ‘It taught me who the people are that are really important and
that the people who aren’t important, aren’t really important.’

Gaining perspective and learning about himself and his limits and
capabilities was another eye opener. ‘It taught me to be myself,’ he says, ‘and
to let the facts unravel. You’re gaining perspective the whole time; you start
appreciating everything because you just don’t know, it’s a total unknown.’

He has also learnt to laugh at himself. Jokes like ‘Have you got balls?’ are not
banned in his presence.

Smoking is now a definite no-no. He will never touch a cigarette or date
someone who smokes. ‘I’m not interested, I really, really hate it,’ he says. He
is also now more conscious of his health and acknowledges that he should
probably be doing more exercise than he currently does. ‘I generally try and be
as healthy as possible, but I do carry on with life. It does play on my mind.’

As far as diet is concerned, he is familiar with all the literature on clean eating
and eating certain foods in moderation. ‘I try to have a balanced diet and
remain conscious of it,’ he says. It is a far cry from how he lived in London,
where fast food was all he and his pals could afford and drinking alcohol was
all they wanted to do. Nowadays, he regularly monitors his cholesterol and
tries to avoid things that are known to cause cancer. ‘I’m aware of things and
I monitor them,’ he says, ‘but you also can’t live life with “what ifs”.’ It was
because of this that he returned to England shortly after his cancer experience,
determined to finish what he had started in terms of his gap year. ‘Going back
was the best thing that I ever did.’

Having an oncologist who was ‘a hard man with a limited bedside
manner’ also taught Chris how important it is to have a doctor who is warm,
open and honest. ‘I remember vivid things about him and how uncomfortable
I was in his office; he was just not a nice guy to deal with.’

When he moved to Cape Town to study, Chris was blown away by his
new oncologist, who was both warm and friendly. This doctor was shocked
that no one had spoken to him before about a prosthetic testicle and offered
him the option. Although Chris turned it down, he now knows that if he ever
does want to consider it, it is a good idea to go for the same size prosthetic, if
not smaller, for comfort reasons. When Chris was faced with a scare during
his studies when another lump was found, this doctor was ‘phenomenal. He
gave me the understanding that there were better ways with dealing with it.’

When he moved back to Johannesburg, Chris decided not to go back to
his original oncologist. If he is ever diagnosed with cancer again, he will
seriously consider going to his Cape Town oncologist for treatment. It goes to
show how crucial it is during traumatic and stressful times to have positive
and warm energy on your side. ‘It would be a difficult decision because home
is Johannesburg right now and it is where my family are, but having a doctor
I can trust is really important in the process and you need to understand that.
It’s hugely underestimated.’

Now that Chris is a tall twenty-seven-year-old with a responsible
disposition, each decision he makes these days is carefully measured. He has
been free of cancer for nine years, which brings his chances of getting cancer
back to those of anyone else. ‘It’s always at the back of my mind,’ he says.

‘It’s difficult for me to attribute now what is and what isn’t a result of that
[cancer] experience. I think a lot of what I do is informed by that experience
because it fundamentally changed me – from a confidence perspective and
gaining perspective on life, from understanding people and friends and their
reactions, who is there and who isn’t, knowing when to be there for other
people … I think it has made me a lot more empathetic and a lot more
sympathetic.’

His advice for someone in a similar situation? Be open and talk about it.
‘The more you talk about it, the more okay you will be with it,’ says Chris,
adding that people’s reactions to you will differ wildly from total denial to
total hysteria and everything in between. He advises to let these people deal
with it in their own way. Try not to take away from how they are feeling.
With wise words and an open heart, Chris is determined to always finish
what he started, no matter what. And to live his life winning.

A NOTE ON SUPPORT

Chris’s story is a reminder of how important it is to have the support of
friends and family while going through such a difficult time, as well as how a
brush with cancer can make one more aware of health issues. Your whole
view on nutrition, for example, may change with an experience like this.

‘Support during a life-threatening illness is paramount,’ explains
psychologist Melissa Card. ‘Knowing that there is someone who can listen
and provide emotional support goes a long way.’ She explains that patients
dealing with something like cancer, as well as their family members, may feel
lonely or isolated. This can be as a result of feeling like one is not understood,
which is why emotional support is so critical. If you are struggling to cope
with the realities of a life-threatening illness or have feelings of isolation and
loneliness, talk to a counsellor, a friend, a family member or someone you
trust.

A brush with death as a catalyst for lifestyle change is not uncommon.

Card, who has witnessed firsthand people who have experienced a scare make
changes to their life, says: ‘We become appreciative of the time we have left or
the second chance at life. We often take for granted what we have and think
that we will live forever, even though we know that we will die one day. Death
is never a reality until it becomes a real possibility.’

One of these changes might be the decision to eat a more nourishing and
balanced diet. Consult a dietitian and read up on health. Don’t wait until
tomorrow; start making changes today.

Recommendations for children undergoing treatment for cancer

SHAYNE AND STUART HAY, LUKE’S PARENTS

You have your bad days, but you have to keep trying to see the good in everything.’

For Zimbabweans Shayne and Stuart Hay it was premature puberty that
alerted them to the fact that something was not quite right with their ten-yearold
son, Luke. ‘In a matter of months he went from a size four shoe to a size
seven,’ Shayne explains. ‘He turned into a teenager overnight.’

The family took him for tests and scans, but were told by doctors that it
was perfectly normal for Luke to be undergoing premature puberty, even
though his bone-age showed that of a twelve or thirteen-year-old. It was only
during a consultation with an endocrinologist in Johannesburg that he was
diagnosed with a brain tumour. His tumour marker (ß-HCG) was well into
the thousands, and should have been less then ten for a boy his age.

Apparently this could and should have been picked up earlier through the
blood tests. He was immediately booked in for chemotherapy and underwent
his initial round. Everything was going well; Luke’s blood had recovered
significantly and he was due to check in on the Monday for round two.

It was Sunday afternoon when Luke came through to the bedroom
clutching his head and shrieking in agonising pain. This was followed by
uncontrollable vomiting. ‘We sensed there was a problem, but at that time
had no idea of the severity. We rushed him to DGMC [Donald Gordon
Medical Centre] Oncology where he was immediately sent for a CT scan. It
was then confirmed that Luke had suffered a major brain bleed, resulting in
him slipping into a grade-three coma on a scale of three to fifteen,’ says
Stuart. It was the beginning of fifteen months of basically living at the Wits
University DGMC ICU in Johannesburg. The Hays’ two youngest children
had arrived in Johannesburg for a long weekend, but when their brother went
into a coma, they did not return to Zimbabwe or to their home school for
nearly a year and a half.

Luke spent over 107 days in intensive care and went in for surgery around
fifteen times – mostly so that excess cerebrospinal fluid could be drained from
inside the skull via a ventriculoperitoneal shunt. He was in and out of a coma
for much of the time in ICU. When he finally woke up, he could not move or
talk. The Hays were called into the specialist’s office one afternoon and told
that there was not much hope that he would ever walk or talk again. They
were also told that there was a good chance Luke would be on life support for
an indefinite period of time. It was recommended then that they look into
long-term nursing facilities and perhaps seek some form of counselling.

The Hays, however, did not let negativity or doubt enter their thoughts for
a moment. ‘We didn’t ask why it had happened to us, that just makes you
angry. We just tried to see the positive in everything. You have your bad
days, but you have to keep trying to see the good in everything.’

Luke had his next two rounds of chemo while in ICU. This was
administered through veins in his hands, as his port had been removed earlier
as it was an added source of infection. While undergoing treatment, he was
fed via a percutaneous endoscopic gastrostomy (PEG) tube. All his
medications (other than intravenous) were also given through the PEG.

Shayne says this method did him wonders, as she was able to feed him natural
foods that he might not have eaten otherwise. She took complete charge of his
nutrition, doing as much research as she could on the topic. Luke was fed the
Budwig Protocol (an anti-cancer diet founded by German biochemist
Johanna Budwig), glyconutrients and barley greens. Shayne also lowered his
sugar, dairy and red meat intake. She also attributes the family’s health
during this stressful period to the fact that they had barley greens every day.

Luke kept fighting through his treatment, despite recommendations that
the Hays start looking for a home to put him in. Ten months after his ordeal
began, he started talking again. Two weeks after that, he was walking,
determined to get better. In September 2012, the Hays were able to move back
to Zimbabwe and Luke returned to school. He has not yet fully recovered and
the Hays are still settling back into life in Zimbabwe, but Shayne says it is a
miracle. ‘We don’t worry at all about the future, we make the most of every
day. It was such a humbling experience; we wake up every day and are
thankful. It has been life changing.’

Shayne recommends a PEG tube to anyone undergoing treatment and
believes that nutrition played a very large role in her son’s recovery. Their
support system in the form of doctors, nurses, therapeutic staff, friends and
family was also a huge blessing. Faith also played a very important role in
their journey.

A NOTE ON CHILDREN UNDERGOING TREATMENT

Coping with a child undergoing cancer treatment can be very scary and it
might be difficult to get your child to eat nutritional foods when they are
feeling sick. The Queensland Cancer Council has made certain
recommendations for children undergoing treatment for cancer. These
include:

• Do not force children to eat at this time. Loss of appetite or feeling ill is a common side effect.

• Offer high-energy foods between treatments when your child is feeling better.

• For extra energy, try adding butter and cream to vegetables.

• Ask your dietitian for a list of high-energy snacks.

• Be generous with sauces, as food can taste bland to children (indeed anyone) undergoing treatment.

• Do not allow children to waste tummy space on food that is low in energy.

• Be flexible with meal patterns, as well as choice of foods.

• Give frequent small meals rather than three large meals a day.

In South Africa, there are a number of specialist treatment centres (normally
attached to academic teaching hospitals) that offer specialised paediatric
oncologists. Contact the Childhood Cancer Foundation (CHOC) to find out
more.

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

Early diagnosis of cancer is very important, because cancer that is diagnosed in an early stage can be treated more effectively and also limits the possibility of metastases developing.

MARTIN CONNOLLY, CANCER SURVIVOR

‘After we came out [of the diagnosis], of course we were very emotional. I thought it
was a death sentence at that point.’

At sixty-nine years old, Martin Connolly is fighting fit. He ran the twentyone-
kilometre Two Oceans Half Marathon in April 2011 and is regularly on
his bicycle, taking on the many hills around Cape Town. This is, of course,
when he is not falling off, driving his wife crazy with his biking injuries.

As he is gregarious and the picture of health, you would never guess that
Martin only finished chemotherapy and radiation treatment for rectal cancer
five months before running the Two Oceans. In fact, it is difficult to picture
him in any shape other than that of robust fitness. But for five-and-a-half
weeks of his life, he was sicker and in more pain than he ever thought was
possible – at a period when he was meant to be having the time of his life.

‘I retired completely at the age of sixty-seven and, in my first year of
retirement, when I really should have started enjoying myself, I had a cycling
accident. It was March 2011 and I fractured my left hip and pelvis. I
recovered from that and then got back on the bike in June. In early July, I was
going to cycle early one Saturday morning. When I went to the toilet before
going out, I saw that the toilet bowl was full of blood. I didn’t worry about it,’
Martin explains.

Figuring it was just something minor, he had another enjoyable cycle and
a relaxing weekend. By the Monday, however, he realised it was probably a
good idea to have it checked out. His GP sent him in for a colonoscopy and
the mass that the doctor had found was sent in for a biopsy. ‘When we went
back to the doctor’s office on the Tuesday, he said, “Come and sit down. I
would like to give you good news, but I can’t. There is no such thing as good
cancer and the cancer you’ve got is aggressive.”’

Martin says when someone tells you that you have cancer, your emotions
immediately go on a rollercoaster ride. He thought it meant that he was
dying. He was sent in for MRI scans and CAT scans straightaway, so that
they could judge the extent of his cancer before making a treatment decision.

In the meantime, the Connollys alerted their children and the rest of their
family.

The general surgeon dealing with Martin’s case wanted to operate
straightaway to remove the tumour, but Martin was sceptical. ‘I was a
mechanical engineer. I see everything as an engineering problem. I said to
him, “You’re a general surgeon, how technical is the surgery?” He told me it
was very easy and he had done it plenty of times. I said, “Before I go in, I
want at least an oncologist sitting at the table with me because I want to know
what the alternatives are and options I’ve got.” Then he got a bit shirty with
me. He was attending a colorectal surgeon’s workshop at Groote Schuur
Hospital the following morning, so he took my test results with him and
presented them to the colorectal team.’

It was because of this that Martin was referred to Groote Schuur, where
his case was reviewed at the colorectal clinic. He waited three weeks before he
was seen by the team. ‘It was a bit stressful because they say it is aggressive,
but you don’t know what that means. They talk to you in medical terms, but
the layman doesn’t really understand.’

The doctors at the hospital were also confident that surgery was the best
way to get rid of the tumour and the head of colorectal surgery at Groote
Schuur, Professor Paul Goldberg, who is also the professor of surgery at the
UCT medical school, expressed his interest in conducting the surgery himself.

Martin was prepped, sent into the operating theatre and put under
anaesthetic. When he woke up an hour later and felt no pain, however, he
realised the operation had not happened. ‘They came in to see me and he
[Goldberg] said that if he had done the surgery, I would have been incontinent
for the rest of my life. We sat down and had a chat and he said that it’s not
just about saving a life, it’s about the quality of life that you have after the
surgery. He had decided not to do it. If I had just agreed with the first
surgeon, I’m sure he would have climbed in and done the surgery and I would
have been in a world of trouble.’

The Groote Schuur team, who Martin believes are some of the best
doctors in South Africa, came up with a treatment plan for him that would
involve chemotherapy and radiation. Not wanting to take the place of
someone at Groote Schuur who may not have medical aid and needed
treatment (Martin’s medical aid is one of the highest schemes), he left with the
plan and started his treatment privately. ‘I was very sick at the time after the
chemo and the burns from the radiation; it was a horrible time. The chemo
was okay, it just knocks you flat, but the radiation was the worst, the burns
were terrible. In the final week they had to take me into hospital and put me
on a morphine drip for the pain for the burns.’

While Martin had always been very healthy and fit, he made sure to eat a
lot of fresh fruit, blended in a juicer, during his treatment and recovery. He
also ate a lot of fresh vegetables. He read up about his type of cancer and the
resounding advice was to eat a lot of fruit and vegetables. ‘If anybody is going
to go through this and go through chemo, they need to try and keep
themselves topped up on fruit and good vegetables, fresh vegetables and raw
vegetables. For me it was certainly important to keep the vitamin C up.’
Martin giggles, ‘I was taking a lot of prune juice at one point when I had the
burns, just to make things a bit easier.’

Once his treatment was completed in October 2011, he had to wait six
months before he could be tested to see if the cancer had been cleared. He was
desperate to know straightaway if he had beaten it, but would have to be
patient. In February 2012, Martin and his wife decided that if they were going
to sit around waiting, they might as well be comfortable doing it. They flew to
Thailand and lay on the beach for five weeks. ‘This is where I really started to
recover. I ran on the beach every morning – seven to eight kilometres – and
then relaxed for the day.’

It was happy news a few months after their return. Martin underwent
of any cancer. Because of his sporty lifestyle (and cycling accidents) he has
also undergone bone-density tests and MRI scans, which all show that he is in
perfect health.

A triumph for Martin, besides returning to cycling and living an active
cancer-free lifestyle, has been becoming a buddy with PLWC. He found it
incredibly tough to locate any sort of support group when he was diagnosed
and eventually consulted the Irish Cancer Society online with the help of his
son. He says that they were great and answered questions very quickly.

Locally, however, he battled to find a counterpart. ‘Some people want to talk
about it and want to know exactly what is happening and all of the details.
First of all you want to know “Why me? Did I do something wrong?” I
thought I was this fit sixty-seven-year-old and suddenly I got knocked down
with this cancer. I had a whole myriad of questions but no one to ask.’

After months of trying to find a South African cancer support base,
Martin eventually joined a small support group at Groote Schuur. It was here
that he met Linda Greeff, co-founder of PLWC, and joined their
organisation. He volunteers as a buddy so that if anybody else goes through
rectal cancer, he can offer his story, experiences, tips and advice. He has
found it quite a humbling experience. ‘I don’t care how sick you are, you will
always find someone who is sicker and has got more challenging
circumstances,’ he says. It is the people that he has met on his cancer journey
that Martin says have been so inspirational, who have been through far more
than he has and are still smiling. He emphasises the importance of asking
questions and getting second opinions, especially because his experience at
Groote Schuur was profoundly positive. ‘I would much rather go there and
talk to those guys who are not in it for the money; they are in it for the
dedication and what I believe are the proper reasons – they want to make a
difference in people’s lives,’ he says.

In terms of exercise, Martin believes that being fit is the major reason why
he recovered from his illness so readily. His plan is to keep himself as fit as
possible. ‘They talk about cancer being in recession, but that means that you
are waiting for it to come back again. I’m not. But if it does, I’m going to be
ready for it.’

A NOTE ON DEALING WITH CANCER

As Martin’s case illustrates, it is crucial to gain a complete understanding of
your specific type of cancer once diagnosed. It can also be very beneficial to
get a second opinion. Ensure that you feel comfortable with your doctor, as
well as understand what he or she is telling you. On top of understanding
your symptoms, type of cancer and available treatments, Cancer Research UK
suggests also asking your doctor questions like:

Why do I feel so sad and anxious all the time?
I feel as if I have lost control over my life, what can I do?
Is my cancer or treatment causing these feelings?
How can I make myself feel better?
Who can I talk to about how I feel?
Are there any medicines that can help with depression?
What are the side effects of these drugs?
How do I talk to my children about how I feel?
Do other people with cancer feel like this?
How long am I going to feel like this?
What can I do to help myself get through these feelings?
Will seeing a counsellor or psychiatrist help me?

Organisations like PLWC offer a great service by facilitating relationships
with other patients, referring you to dietitians and counsellors, and assisting
with resources that offer information on diet, nutrition, treatment and more.

PLWC can also put you in touch with doctors and specialists if needed. Most
importantly, a support group like this reminds you that you are not alone.

PLWC’s Cancer Buddies programme is not only wonderful for the
support it gives cancer patients, but is also an excellent way for patients,
survivors and their families to give back. We have seen how taking control of
diet can give back power to a patient and their family; involvement in
PLWC’s various projects is another way to take action, giving survivors,
patients and their families an opportunity to roll up their sleeves and actively
fight cancer.

Another lesson from Martin’s story is that if you experience any odd
symptoms, it is crucial to consult your doctor immediately. ‘Early diagnosis
of cancer is very important, because cancer that is diagnosed in an early stage
can be treated more effectively and also limits the possibility of metastases
developing,’ says Greeff. ‘Go for regular screening and make yourself aware
of the early warning signs of cancer.’ Useful screening recommendations
include regular prostate exams for men and pap smears for women. Men
should self-examine their testes monthly and those over the age of fifty should
have a colonoscopy every five years. Women should self-examine their breasts
monthly and go for a mammogram every second year after the age of fifty.

You matter because you are. You matter until the very last moment of your life. And we will do what we can. Not only to help you die peacefully. But to live until you die.

DAME CICILY SAUNDERS, FOUNDER OF THE MODERN HOSPICE MOVEMENT

Lionel Smith was a tough man with eyes that twinkled when he was pulling
someone’s leg. His sense of humour was understated and cheeky, but it was
his hard-working nature and determined attitude that set him apart from
many other men. What he lacked in height, he made up for with sheer
strength, his powerful arms and muscular legs giving him a physical
advantage. At the age of twenty-nine, he met my dad’s sister, May, who was
just nineteen at the time. He had approached a table at a party to ask the girl
sitting next to May to dance, when the other girl abruptly got up and left the
table. Left standing looking sheepish, Lionel asked my aunt to dance instead
to save face.

‘I didn’t have my glasses on, I couldn’t see what he looked like,’ May is
fond of telling us with a giggle. A quiet girl from Zimbabwe, slim and fair, it
is easy to imagine the awkwardness of that first dance. Over thirty years later,
May has not changed, although her hair is shorter and her heart has grown
tenfold – big enough to love her entire family, the orphans she looks after at
her church and the patients she cares for as a nurse. She is also braver, taking
on the world without a husband by her side.

May and Lionel married when she was in her early twenties, and they
built a cosy home on a six-acre plot in Midrand, Johannesburg. Over the next
few years, they would have two daughters and one son. My uncle Lionel was
the outdoorsy, naturally fit one in our family, who, without training, could
hop on a bike and cycle for kilometres or would take off down the road for an
impromptu jog. So when cancer developed outside his stomach and bowel, he
could feel that something was wrong. ‘He knew for some time prior to his
final diagnosis that he was not well, but he had been told by a GP that he was
just suffering from stress. He had already had a gastroscopy and colonoscopy,
which failed to show up the tumour. He changed GPs, but by then the tumour
was palpable,’ May explains.

He underwent major abdominal surgery, which, due to complications,
resulted in two other operations. It took its toll on his physicality and he was
left suffering from severe internal thrush because of the antibiotics. ‘He was
physically wasted and weak. The surgeon, after taking out the initial tumour,
let us know that because the tumour was so large he had not managed to get a
“good margin”, which meant that there were cancerous cells left behind.’ It
was the start of a long journey, one that would play a tedious role in their lives
for years to come.

It was at this point that they started investigating factors such as diet and
lifestyle that could assist with treatment and healing. ‘Lionel was always a
physically strong person, playing golf and squash regularly, as well as working
out at gym,’ says May. This did not change once he recovered from the initial
surgery. Lionel remained strong and buoyant, despite the illness spreading
inside. ‘He continued with unrelenting dedication. He also took up fly fishing
and we tried to live life as normally as possible, taking family camping trips
whenever we could.’

The family were also advised to see a dietitian, who prescribed and
supplied a plethora of vitamins and a list of what foods to eat and what foods
to avoid. These helped him gain strength and health, but May had to
constantly nag and watch everything he ate like a hawk.
‘There is so much we read and are told virtually on a daily basis on what
causes cancer – from using cellphones to what we eat and drink. Adding to
this is the fact that we all know someone who has or has had cancer, so the
knowledge of the disease lurks in the back of your mind, almost casting a
shadow on your lifestyle choices. Along with trying to make the right choices,
they require much discipline and, most certainly, vast financial resources,’ she
says.

Lionel was also referred to an oncology unit, where he underwent blood
tests and scans every three months. The oncologist informed them that there
was no chemical therapy available to treat Lionel’s type of malignant cells and
that the side effects of radium treatment outweighed its benefits. ‘I remember
at some stage being told that there are no set factors that clearly determine
treating or preventing his type of cancer. The only treatment available was
“debulking” the tumours, which meant surgically removing the tumours.’
Physically, Lionel remained strong and healthy looking, his tanned skin
around his eyes crinkling when he smiled.

The cancer, it seemed, was something the Smiths might just be able to live
with. Two years after his diagnosis, Lionel was retrenched and rehired on a
consulting basis without company benefits. May took on their medicalinsurance
costs while working as a registered nurse in a private clinic, which
meant Lionel’s medical costs for scans and follow-ups were still covered.
Relief ensued. When it seemed there had been a regrowth of tumours, scans
came back that confirmed these were merely scar tissue. The family was elated
and relieved. Soon after, May left the clinic to join an NGO and, while most
of her salary paid their medical insurance, Lionel was only going for checkups
every six months with the oncologist. It appeared as if life might continue
quite normally.

Two years later though, another tumour was found. A clinical drug trial
had been undertaken at the oncology unit and Lionel was contacted to
participate, which he did in the hope of a cure. ‘For most of that year he was
on the drug with close monitoring. He struggled with the side effects, which
changed his physical appearance. Unfortunately, the tumour did not shrink
or stop growing as had been hoped and, because of this and the incredible cost
of the drug, it was stopped. This was a huge blow for Lionel. Again he had to
undergo extensive abdominal surgery and a long period of recovery. This
affected us financially, as he didn't earn an income during this period.’

It was a difficult time for May and her family, as their ‘normal’ lives
began to alter drastically, and as finances became an enormous burden. She
says, ‘Because the disease hangs over you – emotionally and mentally – you
feel like you are treading in deep water. At times you just feel so
overwhelmed, so afraid and so drained. Then you block it out and you don’t
talk about it or about anything that might happen in the future, you just focus
on the day-to-day mundane things.’

The disease deepened their need for God. The Smiths’ dedication to their
church grew, along with a more meaningful faith. ‘There was always the hope
of a miracle that Lionel would be healed,’ May says. It is a difficult conflict
though – accepting someone’s illness or believing God will cure them – and it
is one that has run through her mind many times. Sometimes, during
Lionel’s illness, in a display of brave hope, May would talk and act as if
cancer was not part of their lives.

The support and love they experienced during such tough times are
memories that remain. Deeper relationships with family and friends were
formed, and spiritual, physical and even financial support was forthcoming.
Despite their tremendous faith and all the lifestyle and dietary changes
they had made, the struggle continued. In 2007, Lionel had his last operation.

By then he had already had his spleen removed, as well as a kidney, a testicle
and sections of his bowel. ‘The surgeon could no longer remove the growth as
it “would have been incompatible with life”. Then we had to realise and
accept that there was no medical answer or help. The only thing that was left
was analgesia,’ May explains.

It was an emotional time as Lionel’s robust and healthy body began to
deteriorate. I went to fetch my cousins one day from their house and asked if I
could pop in to see him. He did not want me to, hating the thought that he
would be remembered as anything less than the man he had been. In some
ways, I cannot imagine what he must have looked like at this stage, as all I
had ever known from a young age was a very strong man. It was not plausible
that his body could let him down.

‘Family and friends were so kind and supportive. But you have to work
through all the emotions and mental gymnastics – anguish, the different
stages of denial, the acceptance of reality, anger and disappointment. These
are in no particular order and you are certainly not able to move on from one
to another without going back to any one again. Added to this, you still have
to keep on with everyday responsibilities of school, work, paying bills, buying
groceries and preparing meals,’ says May.

The process, she explains, sometimes involves people saying things out of
kindness that you are not ready to hear. Some people began avoiding Lionel
because he had started to lose so much weight and had become ‘haggard
looking’. It is a hellish journey to undergo and the pain can still be raw for
May.

‘The last ten months of his life were a steady decline of health – he was
shocked and dismayed at how the disease robbed him of his physical strength
and appearance. It was heartbreaking and frightening to be so helpless, unable
to do much to help. He carried on working and I was given time off work to
help him with his work, but a lot of the time I struggled, angry and frustrated.

There were times when I knew he wanted to talk about dying, but I avoided it.

There were times when all I could do was cry and he would comfort and
encourage me.’

When acceptance began to slowly infiltrate, Lionel went to Hospice. It
was two months before he died. May explains that it was something they had
avoided, because it felt like if he went there, it meant they had given up. ‘The
doctors and nursing staff were so compassionate and kind. The doctor
changed his medication regime and gave him a blood transfusion, which
made him feel so much better.’

It was the beginning of December and 2007 would be the last Christmas
holiday the Smiths spent together as a family. By the last week of February, he
had rapidly deteriorated and was readmitted to Hospice. ‘The care of the
doctor was outstanding. She prepared us all for the end, as well as made
Lionel as comfortable as possible. She treated him with such gentleness and
dignity. They allowed us to stay with him all the time and our family was
there with him at the end. It was a time of celebrating his life with him,
thanking and honouring him, as well as deep grief. We were not ready for
him to leave us as a family. But because he was so emaciated and ill it was
also a relief for him not to be suffering.’

May says that through it all, there were many people praying for them and
supporting them with meals, food and money on a regular basis. Family
stood alongside them, supporting them in many ways. ‘The grace and
kindness of God carried us through it all – through our families and friends.

My advice to others would be to stay connected to your family, friends and
God – you need all the support you can get. Contact Hospice for long-term
palliative care – they also have a multidisciplinary approach to managing
disease. Try to be open to discussing all aspects of life-defining diseases, but
don’t give up the will to live and certainly don’t live in fear all the time. Don’t
let the disease become your identity.’

It is over five years since Lionel’s death, and May still misses him every
single day. Shortly after their first Christmas without him, my cousin
announced that she was pregnant. A little girl was born into the family in
2009, with a twinkle in her eye that she very easily could have inherited from
her grandfather.

A NOTE ON HOSPICE

Hospice provides support for cancer patients and their families, based on a
programme and a philosophy of care that is dedicated to improving the
quality of life for patients with life-threatening illnesses. Sister Cherry
Armstrong says, ‘Hospice offers a wonderful service in palliative care and it
also offers respite for the patient and the family, as well as grief counselling.

Hospice is there to give necessary support for the dying patient and family.’
Made up of a community of people who have a shared dedication to
promote the physical, emotional and spiritual well-being of the terminally ill
and their families, Hospice has branches all over the country. Palliative care is
a way of providing relief from pain and symptoms, while helping patients
and their families come to terms with death, without hastening or postponing
it. It also involves providing psychological and spiritual aspects of patient
care, as well as a support system, and addressing the needs of patients and
their families. Above all, palliative care aims to enhance the patient’s quality
of life and positively influence the course of his or her illness.

As patients and their families go through the stages of grief, counselling
and bereavement support from an association like Hospice can be incredibly
important. Psychologist Melissa Card explains that when dealing with death
or a terminal illness, one goes through various stages like denial, bargaining,
anger, depression and acceptance, in no specific order. These stages were
hypothesised by Elisabeth Kübler-Ross through her work with terminally ill
patients. She found that when a person is faced with the reality of impending
death, he or she will experience a series of emotional stages. It can be very
beneficial to have someone guide patients and their families through these
stages. Card says: ‘Having an organisation to assist when there is a terminal
diagnosis can be helpful in that the loved one can pass with some dignity and
can be cared for. Often people are left alone and end up passing away on their
own. Hospice not only provides a sense of support and comfort for the ill
person, but also for the family.’

This process, while helpful on an emotional level, can also be very
practical. Sister Armstrong says that once a patient’s time is limited, they
become very accepting of the dying process. ‘We advise on everything from
sorting out wills to children to bank accounts. Sometimes there is not time,
but the issues are addressed wherever possible by the palliative staff.’

When it comes to religion and spirituality, Sister Armstrong explains that
many patients and their families already have beliefs in place. Hospice
provides the spiritual support they need, depending on their preferences.
Eating and diet plays a very small role at this stage. ‘The patient normally
stops eating, which is a sign of the beginning of the end of life’s journey,’ she
explains. ‘They eat very small meals and if a patient can manage to eat, give
them whatever they want. They eventually stop taking fluids and once that
happens, it’s often three days or so before they pass over.’

For families, she advises getting help and advice from the palliative carer.
‘They are trained to hold your hand through the stages. Have time out and try
to do “normal” things in the day. Get plenty of rest to give you the strength
you need.’