No one really believes those annoying couples who claim never to fall out with
their partner. Surely everyone has a moment when they wonder why marriage
was a good idea: a flash of irritation at that infuriating habit or a
fleeting murderous thought over some marital discord? It's all part of the
“for better, for worse” element of most marriages; the moment passes and
life jogs along as usual.
But sometimes it's not that simple. While caring for and supporting each other
seems realistic and natural in normal circumstances, everything changes when
one of the couple becomes seriously ill, especially if that illness could be
terminal.
When this happens, the sufferer is expected to move into sainthood mode, while
their partner becomes a ministering angel. The notion that couples find
themselves under intolerable strain - the effects of medication, financial
concerns, anxiety about the future and “petty” worries such as resentment at
a disappearing sex life - is taboo. It seems so unnecessary in the face of
the bravery and stoicism expected in these circumstances, especially since
the public face of this kind of tragedy is now inspirational figures such as
Jane Tomlinson, the amateur athlete who raised £1.5million for charity
despite suffering from terminal cancer.
Jon Nicholson's life was thrown into unexpected chaos when, in 2003,
osteosarcoma, a rare form of bone cancer, was diagnosed in his 35-year-old
wife Emma. Fourteen months later she was dead, leaving him with three young
children and haunting memories of how her illness had torn apart a
relationship they both treasured.
“You never think about something like this when you're actually getting
married,” he says. “Can you imagine walking down the aisle and saying
something such as ‘for better or worse...oh, hold on, could we just make
that for the next 13 years and then that's me off the hook'? You have some
idea of being together 40 or 50 years, having all that time and then maybe
one of you drifting away. You don't imagine losing your wife so young and in
such a dramatic fashion.”
From the outset Jon knew that Emma's condition was terminal, but she always
felt that she would beat it, fighting so hard to stay with her children that
he couldn't contemplate discussing the truth with her. However, he hadn't
expected that her illness and everything associated with it would have such
a detrimental effect on their relationship as well as their lives. Emma's
role as a mother was constantly eroded by the effects of her illness and Jon
had a delicate struggle to minimise the impact on their children while not
letting Emma feel that all her dignity and worth had been stripped away.
Problems and misunderstandings appeared from the most unexpected angles. Jon
recalls making the Christmas lunch and interrupting peeling carrots to help
his son put a new toy together; he returned to the kitchen to find Emma
preparing the vegetables and stopped himself taking over as he knew how much
it meant to her to be able to retain some of her independence, especially in
something so symbolic. Yet, that night, as they lay in bed, Jon was
absolutely stunned when Emma hissed at him: “I can't believe you even made
me cook the Christmas lunch.”
Four years on, his hurt at being cast in the role of carer and yet never being
thanked for his support is still evident. Other people let them down as a
family - the friends who found Emma's illness too hard to cope with and
disappeared; the group of young mothers she went on holiday with who phoned
Jon to ask him to take her away because they thought her illness might scare
their children; the women who phoned Jon regularly to tell him how hard they
found it to cope with Emma's cancer.
Bolstered by a few very close friends, Jon bore the brunt not just of Emma's
illness, but also the physical and mental effects of her treatment as he
supported his family psychologically and financially, keeping their home
running smoothly and juggling all the normal chores as well as trying to
assimilate all the new ones that had come with Emma's disease. “I know what
she was going through and how hard it was,” he says, “but it would have been
nice if she'd acknowledged, even just now and then, what I was doing and
said thanks.”
When Caron Keating, the TV presenter, died at the age of 41 in 2004, the
public reaction was that of shock and dismay, along with admiration for her
bravery in battling breast cancer for seven years. Yet reading the account
of her illness in the book Next to You by her mother, Gloria Hunniford, the
shock lies in the way Caron is portrayed. It is surely subconscious, as
Gloria's love for her daughter and pain at her death are clearly boundless,
but her daughter comes across as self-obsessed and selfindulgent in her
quest for treatment, with her husband and young children dragged in her
wake. Although many might suspect that our behaviour would be similar in
those circumstances, this is not a popular view. The public wants its heroes
- and heroines - to be courageous and selfless, facing illness,
disfigurement and the end of their lives with bravery and acceptance.
Lesley Howell, consultant clinical psychologist at Maggie's Centre, Dundee,
says that recognising that you are not alone in resenting an ill partner,
even momentarily, is very important. “Very often, the last few days or weeks
a couple have together is marred by anger and resentment,” she says. “It's
very hard, especially if they are aware that this is the end of their time
together and they would like it to be a time just of love and closeness. The
bereaved partner can subsequently feel devastated by their memories. We
don't talk about this much, but we should, because guilt makes these
feelings worse. So many people have told me of thinking ‘I wish it was
over...I wish they would just die', but it's not because they don't love
someone, they want their suffering to be over. It's a swift thought, but it
causes such pain to those who think it.”
Maggie's Centres, which provide support specialists and psychologists to
cancer sufferers and their families, first opened in Scotland, but are now
countrywide, with more scheduled to open in the next two years. “We fill a
unique role in providing support. Some couples will never have that
conversation about dying because that isn't what their relationship is about
- with them, everything is based on the hope of recovery. Others will want
to discuss it, to plan the future,” Howell says. “We have to get away from
this idea that we should not voice all the fears and resentments that come
with some serious illness.”
Graham Wicks has had a great deal of support from family and friends, but at
55, just as he was heading for early retirement, his main reaction to his
terminal illness is resentment. “I cannot tell you how p****d off I am,” he
says. “I never thought I would ever be ill like this, nor that I would react
like this. I've always kept myself very fit, worked hard for a great life
for my family and I'll be dead in a year and they'll just get over it and
move on.”
However, Graham, who asked for his name to be changed, also admits that he's
never actually told his wife and two adult daughters how he feels, but deals
with it by constant nitpicking and pointless arguments. “I know they're
upset by my illness, but I can't help feeling it would be easier for them if
I just died now - how can they carry on going to work and university as if
nothing has happened? My wife even suggested the other day that doing a bit
of gardening might help me feel better - what sort of patronising nonsense
is that to be saying to somebody who'll soon be dead?”
Lack of communication for myriad reasons appears almost inherent to terminal
illness, with devastating results. Jon Nicholson admits that he found
himself thinking, “How much more do I have to take, because I don't think I
can take it much longer. If you're going to die, do it! Die!” and then
carried on, loving and caring for Emma, looking after their children and
doing his best to make life happy after her death.
His honesty is both stark and heartrending; had she lived, he says, he doesn't
know if their relationship could have survived her illness, which is one
reason why he has written so candidly about his experience. “Cancer
destroyed my relationship with my beautiful wife. I'm not so bold as to
think that talking about it will have a huge impact, but I'm glad if it even
helps one or two people going through this. We need to talk about this
honestly because the worst thing is feeling so alone with these emotions.”
How to cope with the pressures
A change in role for each partner is inevitable. Discuss the impact of this on
your life and be direct about how your partner can best support you with
this change.
Establish realistic goals and acknowledge your successes on a daily basis.
Learn to recognise the effects of stress on your mind, body and behaviour.
Explore how you both experience stress and help each other to identify
coping strategies.
Set aside time together and protect it. Conserve your energy for one another -
let your answering machine do its job.
Be forgiving of yourself. Acknowledge that negative emotions may be
experienced and directed towards others.
I Want My Mummy Back by Jon Nicholson is published by Vermilion, £14.99
www.maggiescentres.org; 0131 5372456
