“Cancer is
a lonely place to be”
We've 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 have 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.
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 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
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