“Cancer is a lonely place to be”
In our discussion this week, we talked about our experiences of
loneliness. Naz told us that loneliness can be a long-lasting effect of a
cancer diagnosis and can increase the chance of developing depression. So why
do we feel so lonely, even among our family and friends?
We found that whilst some of us have experienced loneliness lifelong,
for many of us the experience of feeling lonely after diagnosis of breast
cancer is new. We find that loneliness continues even years after developing
cancer. We find that there is a lack of connection between ourselves and our
friends and family, even in the most supportive of our relationship groups.
Having a serious illness such as cancer changes our perspective on life with a
real sense of fragility and a loss of our own sense of self in a way that
cannot be fully understood by others who are not directly affected. We have all
lost friends who did not - or could not - support us, which was hurtful. This
adds to the feelings of being alone. We feel apart from those around us.
Many of us describe that we prefer to spend time in our own company and
that this makes us feel “lonely - but safe”. We don’t feel the need to put a
smile on when we feel so alone, even in company.
For some, the physical reality of breast cancer exacerbates the feelings
of loneliness. Some have retired from jobs we enjoyed and miss that purpose and
connection with our colleagues. Symptoms such as fatigue mean some of us cannot
participate in activities we used to love and this makes us sad - missing out
spending time with others makes us lonely.
Almost all of us find that being in the company of others who have been
diagnosed with cancer allows us to talk honestly about our feelings. There is a
sense of connection and common experience in spending time together - either in
a local support group or in a virtual group. Nearly all of us agree that our
mutual support eased loneliness and many of us have found firm friends in this
way - people who “just get it”.
In BRiC, we realise we are no
longer alone - we hold hands together.
The Lonely Poem
We didn't
know it was possible to feel so alone and yet be surrounded by love and people.'
The
collective voice of BRiC: the loneliness of cancer. In free verse, in our own
words, from one of our recent discussions.
A silent
holding of hands
A listening
ear
Is that too
much to ask for?
They don’t
want us to talk about our cancer
Our friends
fall away
They block
us out
Put
distance between us
So much
time alone at home, recovering from our treatment, not just alone, but
lonely
We see our
scars every day
But we
can’t talk about it.
Others
don’t get it, they don’t get us
They change
the subject
‘But you’re
ok now, aren’t you?’ they say
We’ve given
up trying to explain
Our
emotions belittled because they feel uncomfortable
We hide our
feelings to protect our loved ones
We didn’t
know it was possible to feel so alone and yet be surrounded by love and people
We feel
like ghosts
Not able to
be our real selves
We hold
back, hold it in, hold on
Deny who we
are
Our cancer
is part of us now
We don’t
really know who we are anymore
It’s the
whole effort of figuring it out, not burdening people with it,
Yet lacking
that connection because we can’t explain it
Sometimes
we self-impose isolation because we don’t feel
Important
enough to take up other people’s time
And we find
it hard to accept support
A lonely
place to be, especially at night when the pain is bad
And our
minds are working overtime
Are we
responsible for our own loneliness?
We’re not
OK
We want to
be allowed to not be OK
We want to
be acknowledged
But they
are bored of our journey, living with the legacy
And no-one
understands this inbuilt fear
The
loneliness of our thoughts
So busy
fearing the future that we aren’t living in the present
We’ve
learned it’s ours to carry alone,
We withdraw
into our little lonely bubble
Our loneliness
a constant companion
Alongside
isolation, fatigue, boredom, silence, regret
Where is
our joy?
Where is
our excitement?
We carry
this huge secret,
We want to
shout out, ‘if only they know what’s going on inside me!’
We are
scared, we are alone, we are lonely in this new world
We walk
alone.
Yet there
are a few of us, who have limited time left
Who have
never felt less alone. We are blessed to have devoted family
And our
happiness may seem inappropriate
Are we in
denial? Or just acknowledging our real feelings,
Rather than
the emotions the situation would seem to demand?
Does it
even matter?
For others
this is a terrible time,
Thinking
about death, we try to be part of the crowd, the living,
But we are
sad and lonely there.
We cling to
each other, our cancer friends,
The ones
who’ve been there, the ones who understand
Sharing our
loneliness through our honesty
And when we
reach out to those who understand, we build a bridge
And for a
time we can feel less alone
As Joseph
Conrad said, ‘We live as we dream, alone.’
Alone at
night, afraid of the future,
But with
hope
We’re
finding our way now
And other
special people become our friends
In our
parallel world
Our virtual
safe space
To be
whoever we want to be, and know we are not quite so alone
