Loneliness

 

“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