Alison's story

 

Being diagnosed with incurable breast cancer at the age of 47 is without a doubt the most terrifying thing that has ever happened to me. It came completely out of the blue, I wasn't overweight, I exercised regularly and ate well, and I had NO primary diagnosis. 

 

    It was just me and my daughter and she had just had her 16^th birthday. She naturally was my first thought....so many milestones looming for her and I couldn't believe that there was a chance that I wouldn't be here to help her through them. When I told her, her words were 'you won't be at my wedding'...

 

    I was beyond distraught. I'm ashamed to say that it's the only time in my life that I've come close to considering ending my life. The pain of the grief and the frustration that I could not get away from it was crippling for me. I'd scream in the shower.

 

    Life became very surreal as I embarked on my chemo 'journey'. I'd watch commuters passing my house and was envious that I wasn't one of them any more despite hating my regular journey to work through heavy traffic. I felt removed from the world as mine seemed to become smaller and smaller. I didn't want to go out and I didn't want people coming to see me. I just wanted to curl up in a corner and die.

 

    When my hair fell out my daughter simply couldn't look at me. Her attendance at school was suffering, she'd be up until the early hours of the morning and sleep late, missing the start of school. A teacher at the school took her under his wing, allowing her to be upset in a private space if it was needed. I'm eternally grateful to him. It wasn't until recently (6 years since my diagnosis) that my daughter told me that she couldn't bear going to bed at night because she dreaded waking up in the morning to the reality of what was happening with me.

 

    I'm 8 years on now and feel that my thoughts about my diagnosis have softened considerably. There will be days when I don't think about it at all. My life is good and I'm fortunate that I have no side effects from my treatment and that this treatment is still working for me 8 years on. Dreaming of a future again feels like it could be within reach but I'm still nervous planning anything more than a year in advance. I don't know how I'll feel when progression happens, I've had it good for so long and it's a thought that progression may never happen....but I must expect that it will. That's the nature of it afterall.

 

    In the meantime, my daughter and I are stronger, we appreciate the here and now and she's my main supporter through all of this. We've found our path together and it feels like it will be ok even if it isnt.

Lavinia's story

 

My name is Lavinia, I’m 63 and I was diagnosed in December 2015 when I was 55.

    I had an Invasive Lobular Carcinoma discovered during a routine Mammogram. The self same breast was biopsied 18 months before hand and I was reassured that it was aging breast tissue. I had a radical left side mastectomy with expander. I’ve had a lot of problems with the expander and the implant. 

 

    I was told in no uncertain terms by my first consultant that I had a very sneaky type of tumour. This instilled a raw fear in me, along with the fact that it had been missed previously. I was afraid with every mammogram I had. It wasn’t until I learned a few years later that ILC usually recurs in other areas of the body and there were zero checks in place to monitor this. This fuelled a greater fear again. My GP advised me to get any ‘symptoms ’I had that lasted more than 6 weeks checked out. I felt left to my own devices and anxious.

 

    In the early years after my diagnosis I felt there was media coverage everywhere with people being diagnosed with cancer and dying. Even the soap story lines followed a cancer diagnosis. I felt bombarded and this increased my fears. I was very afraid of dying a horrible death.

 

    I don’t talk to family about my fears because I don’t want to worry them unnecessarily or to drag them down the wormhole with me. My support comes from BRiC nowadays. I had joined other FB groups but never really felt like I fitted or that I was understood. BRiC was very different and offered support and kindness, under pinned with knowledgeable facts. I could ask anything and felt safe in the group.

 

    I’ve lost too many lovely friends this wretched disease and am heartbroken with every loss. The raw fear has merged into a reality that I may meet the same fate. Also a determination to live my best life whilst I can. I’m not at peace with it but it doesn’t control my life either.

 

Jackie's story

 

Hi – My name is Jackie, and I was diagnosed with stage 3 breast cancer 7 years ago.

    Fear of recurrence is a reoccurring theme. I feel almost justified in my fears as it promotes vigilance and bodily awareness, but in excess, causes me stress and propels me into overthinking.

    My sister died with breast cancer, and this informs and exacerbates my fear. My fear is also grounded in my diagnosis which saw lymph node involvement, aggressive cell type and vascular involvement.

    I am afraid of the pain of recurrence, and how invasive treatments may potentially have adverse effects on the quality of life.

    My partner is my ‘go to’ support and manages to hold my fears, I can openly discuss choices with him, should progression occur, which is a blessing, as I rarely discuss recurrence with others, because I don’t want to alarm or distress friends and family.

    There are moments when I overcome my fear, especially when I feel well or rested and this gives me temporary respite and perspective, but then there may triggers, and I become trapped in anxiety.

    I recently came across a Japanese term called Shinrin – Yoku. Shinrin means forest and Yoku means bath. I love forest bathing – breathing in clean, fragrant air, sensing the stillness and sounds of nature. This sensory experience helps alleviate fear of recurrence and other anxieties too. It is not always available to me; in which case I try to find a moment of peace in my mind – however fleeting. 

    I have adjusted to and accepted fear of recurrence as part of my life now, with all its ups and downs, and enjoy being part of the BRiC community, which is a haven of reassurance and understanding.

Laura's story

 

Loosening Fear's Grip

As she turned around and looked again

What she could see had changed

No longer carefree, instead the big C

Cast its shadow and rearranged

The part of her mind that looks behind

And into the future too

Filled with regret, sadness and loss

Each day she felt fear as it grew

 

A lumpectomy followed, radiation took place

But still that wasn’t sufficient

A new tumour grew within the same breast

It was removed; she felt totally deficient

A new one was made but didn’t look like

The one the knife took away

The nipple and skin she’d had since birth

It wasn’t possible for them to stay

 

Three more years passed until the day

Her internal dread became real

Breathlessness, weight loss, silent fatigue

Fear became what she could feel

Horribly quiet and yet very loud

Signaling the spread of disease

Breast cancer cells had seeded themselves

She was never again to know ease

 

Unable to cope and a mental decline

Fear’s intensity broke her heart

Every day became an enormous challenge

She watched as her world fell apart

But here she still is, she eventually found

A new way to turn to the light

This is not a battle to be won or lost

Nor is it some kind of fight

 

Dignity, grace, courage and grit

They are present, breathing all of her soul

Her world is now seen through different eyes

She works hard to make herself whole

And although her time here will definitely be shorter

Nothing takes away her resolve

She chooses not to let fear hold her breath

Holding hands with others, she emerges and evolves.

Lucy's story

 

I think, this sums me up, in the fact that it is late at night and I am doing this in bed, because if I stop and sit, I start to think and the box that I don't want to open starts rattling. 

To be honest its the last thing I think about before sleep and the first thing I think about  when I wake up. 

Today has made this more real, sitting with a special lady in the final stages of secondary breast cancer, the fear that it could be me one day. 

How to sit with these feelings and live, can be extremely tiring, maybe that's why I try and pack in as much as I can? 

Sometimes the fear can linger, I long to be able to see my children, find partners, marry and be happy, that is my hope and so I live in the moment, well try to.

Claire's story

 

So, I’m not really sure how this is going to go.  FEAR is a big word, and there are so many fears – writing this could go well or could cause lots of tears.  Let’s try …

    My name’s Claire and I am now 61.   My journey with Breast Cancer began in 2010 when I was 47 and I found a lump.  Mum had been diagnosed the year before, so I sort of knew what to expect, but that didn’t stop the fear.  Once we knew for sure, the next fearful moment was telling my children and also my parents who had already been on this journey only recently.  Mum was really pragmatic, “you’ll be fine” she said.  Fast forward through the fear of surgery, then the terrifying fear of that first chemo session and onwards through the unknown radiotherapy.  A year later, I’m done, or so I thought.  Little did I know how my life would be changed.  There followed 9 years of Tamoxifen and the yearly worry of mammogram results.

    

    In 2019 I had a cold and lost my voice. This didn’t resolve and led to several GP visits, different medications, an x-ray and finally a trip to see an ENT specialist.  All through this, I don’t think I really considered it could be the return of Breast Cancer.  No-one had mentioned symptoms like this – I had thought it would come back in my boobs, or show as pain in my hips or back – that was all that had been suggested as a cause for concern.  Anyway, the specialist discovered my vocal chord wasn’t working properly.   “We need to do a CT scan in case” she said. “In case what?” said I.  It was then that I started to think Cancer and the fear was real.

    I certainly wasn’t prepared for it.  Thankfully my husband came with me when we were told.  This is it, never known fear like it.  Fear of death was REAL.   Fear of treatment, fear of telling family IT was back.

    I’m 5 years on and doing well, living with cancer.  However, the fear is real and is always there.  Sometimes I can push through, sometimes I get very teary, sometimes grumpy.  The scans every 4 months make me feel sick.  A real physical, gut wrenching sick.  As time moves on, I guess I should feel more secure, and at times I do, but waiting for the scan results brings such a mix of emotions and fear is a huge one. “What if” is probably the biggest. Everything seems to revolve around the results of that one scan. The fear is real.

Ruth's story

 

Ten years ago, Ruth was diagnosed with Stage 1, Grade 2 Invasive Breast Cancer following a mastectomy for extensive DCIS (Ductal Cancer in Situ). During those 10 years the physical (medical and surgical), mental and emotional consequences of diagnosis and treatment have been significant. Despite 10 year of NED (no evidence of disease), the realisation that no one can ever tell you that you are cancer free and that the cancer will never come back has hit hard. It’s always there …

Always there

 Your are always there with me

Through the good times and the hard

We have been through so much together

I lie in bed at night and you speak to me

I’m at work and you pop into my head

I’m with friends and you are sitting on my shoulder

Some days you feel further away

But others you surround me, fill me … and scare me

 Fear of cancer recurrence, you will be with me forever but I will not let you overwhelm.