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.’