A – is for Apple everything – iPad, iPhone, iMac! Don’t know what I would
have done without them all. Also for crazy curly Afro hair – seriously
it’s just growing out and I’m going to look like a member of the Jackson Five
if it doesn’t calm down soon! And Adventures yet to happen!
B – is for Boob – just hope to have a matching pair at some point! Blue
Butterflies, Blankets, Bed and Beach! love the beach – I need to get there
soon! Blogging and Blogs! Both writing mine and reading a lot of other amazing
people’s blogs really help.
C – is for Cuddles with Clover, Coconut, Chocolate, Candles, Cake,
Cinderella (my favourite fairytale) and Courage – you need a lot of this with
cancer!
D – is for Doggies and Daffodils – both make me so happy!
E – is for Eating, Exercise and E-bay – all of these make me feel good!
F– is for Friends and Family as I couldn’t be doing this without all of
your support and help. Also cosy Fires, Fairytales – love a happy ending,
Facebook, Flowers, Florida (as you know we hope to get back there – always good
to have a dream!), Faith that I’ll get better, but also Fear of the unknown.
G – is for God (I really hope there is one and he can get me through this)
and Garden because it makes me happy!
H – is for HER2+ and Herceptin – bad as it is, I’m also lucky I can have
this treatment. Crazy Hormones too! But best of all Happiness and Holidays!
I – is for injections – lots – I am like a human pin cushion and my veins
ache! Also for Implant of new boob, and Italy as we hope to visit!
J – is for Juicing! Beetroot and spinach literally saved my bloods last
year!
K – is for Keep smiling even when it’s really bad and Keep going. Kindness
that has been shown to me and my family, and for Kale – which is helping to
keep my bloods good – it’s amazing!!
L – is for my Love of Life – cancer does that to you! and of course
Lemons! I am totally addicted to lemons – and they’re meant to be good for you
too!
M – is for Mermaids, Miracles, Music, Massage, Muga Scans, Making Memories
and of course my lovely March Marvel 2015 gang! love you girls!
N – is for NutriBullet and New – as in new me, new boob, new way of
thinking, just new!
O – is for One step and day at a time! It’s the only way to do it now!
Also for Odd – I feel and look odd – I’m an ‘even’ person so this is difficult
for me!
P – is for Phil (my hubby – he’s been amazing), Positive thinking, Pizza
and of course Photos and Pictures!
Q – is for Quilts – to keep me busy! always good to have a hobby and to
give the children a keepsake.
R – is for Reading, Relaxing and Resting.
S – is for Swimming which helps me to cope with the pain, Sunshine which
never fails to cheer me up and warm my bones and Strength to deal with
this. Also Sewing, Socks to keep my feet warm, and Spinach which I eat
every day like Popeye!
T – is for Tattoo – which I hope to get to decorate my new boob, and for
Turkey – what an amazing family holiday we had there!
U – is for Universe and the Unknown – cancer makes you think a lot!
V – is for Vows, which we hope to renew on a nice beach – not sure when or
where yet though!
W – is for Warm (it helps with the pain), Work which I love and gives me a
bit of normality and routine and of course Weddings! I love a wedding!
X – is for X-rays and scans – all sorts – have to have lots of these!
Y – is for Yoga which helps the mind, body and spirit – everyone should
try!
Z – is for Zoladex – bit of love and hate here but it has allowed me the
option of having other medication to keep the cancer away so it has to be on
the list.
Z is also for Zombies! ha ha. May sound crazy but we’ve just started
watching the Walking Dead. I hate horror movies but this is absolutely
brilliant! It reminds me that things could always be worse (bit like watching
Sky news too!) – you see the world could be over run with Zombies chasing us
which is much worse than cancer!! I also love the special effects – really should
have worked in the movies!
You can read more about Tracey's experiences at her blog:
https://battleofbritten.wordpress.com/
When I was
growing up, the word ‘cancer’ was always said in hushed tones. Although I knew
that my aunt had developed breast cancer in her fifties and that my nana died
of breast cancer, the C-word was not something that we talked about openly in
my family. My sister and I were referred to a genetics specialist in our
twenties and we both remember the doctor’s parting words - “You have nothing to
worry about. Go, live your life!” So we did.
I won’t ever forget the Spring day in 2009 when I realised I had breast cancer.
It was not long after my fortieth birthday and I was in my step-dad’s garden in
Wales. He had died a few weeks previously and I was thinking about how much he
would have enjoyed having me and my sister at home. It was during his illness
that I noticed a change above my left breast, a few centimetres below my collar
bone. Lying back in the grass, I was alarmed to find that the crab-like shape
had grown without me noticing. I made an instant decision to return home to see
my GP and it came as no surprise when, two weeks later, I found out that I had
breast cancer.
My Oncologist asked about my family history and suggested a referral to a
Cancer Genetics Clinic when I finished chemotherapy - he thought it was too
much to deal with during treatment. I completed a detailed questionnaire about
my family history over Christmas, contacting my father - who I am not in touch
with - to complete the forms. He told me that I had a half-sister. With a
growing sense of fear, I discovered that there was a history of cancer in my
father’s family. Although fewer women were affected, their cancers had been
deadly. I was desperately sad to learn that my paternal grandmother had died of
breast cancer a few days after my birth. We had both been diagnosed at the same
age.
In March 2010, the Genetics Consultant explained that all cancers are genetic
in that they arise from the action of damaged genes. However, only 5 - 10 per
cent of these damaged genes - mutations - are inherited from our parents. In
the other 90 per cent or so of cases, the damage in the gene occurs in body
cells across our lifetime, a so-called ‘acquired mutation.’ She said that I
appeared at a very low risk of having an inherited mutation and I was not
eligible for genetic testing. I was offered the chance to take part in a
research study looking for other mutations which involved being tested for the
BRCA1 and BRCA2 mutations. I agreed readily, wanting to do my bit for science.
In the year I waited for the results, I began to ‘move on’ as they say. My hair
grew back and my body recovered. There were even days when I wondered whether I
had actually had cancer at all. I tried not to worry but I think it’s only when
you’ve had a cancer diagnosis that you really understand what it’s like to wait
for test results; the sick fear that sits like a toad in the pit of your
stomach, the bargaining that goes on in your head. My strategy ‘to prepare for
the worst and hope for the best’ sounds glib but in reality I end up in a kind
of madness, swinging between wild optimism and hopeless despair!
Finally, the day of the appointment came around. Apparently against all the
odds, I had a BRCA1 mutation. The news came as a terrible shock. I felt physically
sick. All I could think about was my daughter and my sisters. I felt like
having the mutation was my fault. I felt cursed. It terrified me.
In the following weeks, I thought about the positives - ‘At least that explains
why I got breast cancer’ or, ‘No one else in my family will have to go through
breast cancer.’ It took a long time before I appreciated that I too faced
ongoing risk - overall, women with a BRCA1 mutation have anywhere between a 60
- 90 per cent chance of developing breast cancer and around a 60 per cent
chance of developing ovarian cancer. Just because I had got one breast cancer
didn’t mean I wouldn’t get cancer again, in fact I might be more likely to
develop another cancer. I felt like a cancer-bomb ready to blow up.
If your views about what women do when they find out they have an inherited
mutation are based on the brave account given by Angelina Jolie Pitt, you might
reasonably expect that once I found out I was a cancer-bomb, risk-reducing
surgery was a no-brainer. Not a chance! I found I did not want to have a
bilateral mastectomy. I had developed a deep fear of hospitals after my first
brush with cancer. And anyway I liked having breasts, even if they might kill
me. But, I rationalised, I didn’t want cancer again either. I found myself
trapped in a Mobius strip of indecision.
I tracked down other women with inherited mutations to find out about their
decisions. Counselling helped me explore what my breasts meant to me, as a
woman, as a mother, as a lover. I realised that although I would never ‘want’
to have my breasts removed, I could go ahead with risk-reducing surgery because
it was the ‘least worst option.’ Over time, I began to feel empowered by my
knowledge; unlike my aunts and grandmothers, I had the opportunity to give
myself a chance of living a long and healthy life.
I did go on to have a bilateral mastectomy about 6 months later, but
unfortunately, not without complications. A second breast cancer was discovered
in the tissue removed from my breast. It was a particularly sneaky cancer
because it had not shown up on any scans. The discovery that I would need
another course of chemotherapy was devastating and I felt more alone and more
frightened second-time around. I focused on making sure I was as well as I
could so that I could manage the challenges ahead. I realised how lucky I had
been - my decision to have risk-reducing surgery may have saved my life.
I eventually found out that I had inherited the BRCA1 mutation from my father.
I had never spoken to my half-sister but after my first diagnosis we got in
touch. By the time I was due to get my test results, I had her email address
and was very much aware of her waiting in the wings. It wouldn’t be right to
share my sister and half-sister’s stories, but it’s been incredibly hard to
watch them grapple with their own genetic heritage. Just before Christmas me,
my sister and half-sister met for the first time. Our developing friendship has
been one positive thing to come out of everything.
It’s hard to believe that so many women in my family had breast cancer
and yet I know nothing about their experiences. I wonder how they coped. I wish
that I knew how they had felt and what they thought about their illness. It’s
this silence that has motivated me to share my story. I can hardly bear to
imagine my daughter dealing with our family history. My greatest hope is that
if and when the time comes, I will still be here to support her. I dedicate
this blog to her.
The Oxford English Dictionary defines resilience as the capacity to
recover quickly from difficulties; toughness. I don't think having
cancer requires toughness, because when that breast cancer diagnosis hit
me, I didn’t have a choice. I went into shock, put my feelings into
cold storage, and got on with what needed to be done. Resilience makes a
difference after treatment ends. That's when the physical challenge
diminishes (though it's never over - ongoing medication and the aftermath of
aggressive treatment continues) and the mental and emotional challenge begins.
This is my story so far.
Every morning I wake up to two thoughts: 1) my mother
is dead and 2) I've had breast cancer. Some days they greet me in reverse
order. I have not yet found a technique or tool to stop these thoughts
appearing as I come round from another poor night's sleep, disturbed by hot
flush tossing and turning, discomfort from scars and rib damage, and unpleasant
anxious dreams. But I’ve learned to live with these thoughts, and I let a
few tears fall in the shower most mornings, as I wash away the night’s terrors.
Having cancer brought together every
negative emotion I've ever experienced, and placed them in a tangled mess
spread between my head and my heart. All my fears came together, all my
sadness in one big whoosh, all my anger and grief leering at me, every loss
I’ve ever experienced flooded in and stayed, beginning on the day I got my
recall letter following a routine mammogram.
It's probably nothing, the letter
reassures, but we would like to see you in a week's time to run some more
tests. I stood still with the letter in my hand, turned to stone, for who
knows how long. It was November 5th 2014, bonfire night. That
evening I cried as I told my husband.
After that things moved very quickly,
and that's when the numbness and disbelief set in. This was happening to
someone else, not me. At first the cancer was just a tiny blip of nothing that
could be removed by local anaesthetic; next came a biopsy which confirmed
lobular breast cancer and then an MRI showed it was much larger than had been
picked up on the mammogram. I was given a date for surgery, December 2nd,
and my Wide Local Incision somehow became a Therapeutic Mammoplasty. The
surgeon removed a quarter of my right breast. I felt violated, un-whole,
let down by my body, and I was convinced that I was going to die.
Telling my mum and dad was the worst.
In fact I chickened out of doing it, I asked my sister to tell them and I
visited the next day to reassure them that I'd be fine, they'd caught it early,
there was nothing to worry about. I painted them a cheery picture I
didn't see myself. I wanted to save them from whatever a parent feels
when their child is diagnosed with cancer.
My mum has always been my best friend
and never more so than during my treatment. She was there the day after
surgery, so that my husband and son could go to work. She accompanied me
to check-ups and radiotherapy appointments, brought me tea and cake, took me
out for lunch, and held me while I cried, like I was her little girl again.
As my date for radiotherapy drew near
(I did not need chemotherapy) I developed an infection and I went to my
hospital for checks twice a week for 7 weeks before I was allowed to lie on the
zapping table. At last the wounds mended, with the help of the
strongest most debilitating antibiotics I'd ever taken, and it was Happy
Birthday to you, please come for your first radiotherapy session on your 55th
birthday...
By the middle of March 2015 active
treatment was complete and I was left with sore burnt skin, scars that seared
with pain and tender to touch ribs. Also a ten year sentence of oestrogen
inhibiting medication, meaning I'm suffering menopause symptoms over and over
again, along with other side effects such as joint pain and weight gain.
I went for a meal with my hubby and
sons on the day I finished radiotherapy, to celebrate. I was supposed to
be happy, but I was in shock and completely exhausted. I couldn't eat or
engage in conversation. Every ounce of energy I had was spent, used up on
the treatment I'd just endured, and I had nothing left.
This, then, was the beginning of my new
life, my cancer journey was over. Now I could get back to normal.
Ha! How I wish someone had prepared me for the fallout that came post
treatment, the total desolation of constantly being told how glad I should be
that it was over, I'd survived. How lucky I was that it was caught early, how
fortunate that I only had to have radiotherapy and not chemotherapy. I
didn't feel grateful, I didn't feel full of the joys of spring, ready to jig
through my bucket list and to live each moment like it was my last. And
as I didn't feel as everyone was telling me I was supposed to feel, I thought
that I was doing something wrong, that there was something wrong with how I was
feeling.
I worried constantly about the cancer
returning, I bothered my GP and specialists about every little niggle, I slept
in the afternoons and was generally lethargic and unenthusiastic. I had
by now found an online support group, and by interacting with the wonderful ladies
there I found out that how I was feeling was normal and ok, and that was the
beginning of my recovery. I attended a HOPE course, I joined
an exercise class, I was offered counselling and Reiki and when the freebies
finished I sought out private treatments. I realised that I had to look
forward, not back, and build a new life. I wasn't going to be able to
return to the old one. I wasn't the same person, physically or mentally.
I had already left my stressful job, so I didn't have that to go back to. I was
doing a bit of training, meeting friends for lunch, spending a lot of time
alone, reflecting, ruminating. Slowly I was emerging from my winter
cocoon, but I was a long way from becoming a butterfly.
Then two big things happened: my
youngest son left to go travelling and the empty nest blues hit me, and then my
mother was taken ill, and so my focus shifted away from my own troubles and I
was looking after her. I think perhaps this saved me from spiralling into
depression. Mum died a few weeks later, suddenly and unexpectedly, and I was
overwhelmed with grief. But I had a role to play, stuff to do, supporting
dad, sorting out the funeral, looking after my sisters. Just as I had done when
my cancer had been diagnosed, I got on with it, and cried a great deal when
alone. Mostly in the shower. My mother's death helped me to deal with all
the emotion that I'd held in during my cancer treatment. I'd had cancer,
and my mother had died, and I was still alive. How amazing, how incredible,
how was this possible?
When I have bad days I sometimes wish
that the cancer would return so that I can slip away from this world, because I
don't ever want to lose anyone again. But a precious friend has gone to
join mum, and I am, by some miracle, still here. My feelings have not
overwhelmed me, they have not finished me off, I am still able to get out of my
bed every morning and show up to wherever I need to be.
Right now I am one year cancer free.
There isn't much on my bucket list after all : I'm no sky diver or bungee
jumper, my two beautiful boys are my greatest achievement and they are grown up
now, I've had a rewarding career, and I'm a nervous traveller so I'm not
too worried about seeing the world. But I do have a lot more
books to read and I have a lot more love to give to the people in my life,
and I hope I can hang around awhile to do that.
Little did I
know that the thought of writing about my fears and anxieties as they related
to my breast cancer experience would make me apprehensive. After all, I was an
academic specialising in the cognitive and neural underpinnings of emotional
vulnerability. I had spent many years of my life studying the brain mechanisms
of attention and cognitive flexibility in anxiety and depression, and had
become interested in how we could target and influence those mechanisms to
reduce the impact of anxiety and depression and boost resilience towards
psychological well-being. As the idea elaborated, my fears exaggerated and the
whirlpool of mixed emotions was what I experienced – they in fact felt very
alive. ‘It will be liberating’ one of my friends said, and while I cherished
the idea of that thought, the anxiety about how I would do justice to the
description of the many roller coasters I experienced, their effects on my
young daughter, on my work and to the person that I am now, concerned me. I
broke the ice by putting pen to paper and relished the thoughts that raced
through my head, the sensations that rushed through my body, and the tears that
found their ways to the surface. Three years ago, at the time of my breast
cancer diagnosis on the 2nd of January 2013, I would have never been able to
see this day, me: alive, at work, vigilant, and eager to tell the story. And
yes, in a strange way, it felt rather liberating.
Resilience has been defined as the process of
adapting well in the face of adversity, trauma, tragedy, and injury. Resilient
people are flexible and able to regulate their emotions as necessary. They are
able to embrace their feelings and thoughts and not fight them. Emotions signal
to us what is important, and as such should not be ignored. They are what makes
us human, dynamic and insightful. Resilience is also dynamic and fluid and a
much desirable thing to have when confronted with a breast cancer
diagnosis.
It is estimated that every 10 minutes a woman is
diagnosed with breast cancer in the UK (Cancer Research UK, 2014). With medical
advancements, a large proportion of sufferers live years beyond their
diagnoses. However, the negative psychological impact of diagnosis and
treatment on cognitive health, predicts the development of anxiety and depression
in a significant proportion of women. Diagnosis at a younger age is a
risk factor for vulnerability, cognitive impairments and their consequent
impact on career and responsibilities of a young family. Survivors face fear of
recurrence, loss of fertility and early menopause due to medication, altered
physical image due to major surgery, changes in sexuality and fear of
mortality. Psychological interventions are sparse and the effectiveness of the
existing treatments highly limited. Many women continue to doubt their
abilities in the jobs they once used to hold and suffer enormous insecurities
in the work place.
Every year 2.6 million women with a
breast cancer diagnosis are told that they should be grateful for a second
chance to survive. The experience of fear and hope are very much mixed for a
patient diagnosed with breast cancer. She is fearful of the consequences of
cancer diagnosis and treatment, but also hopeful that with appropriate
treatment she can get better. ‘I have a treatment plan’, I thought. I was
confident that I could cope well. Multiple major surgeries, extensive
chemotherapy for four and a half months, and a long course of radiotherapy took
just over a year to complete. The depression, the exhaustion, and the side
effects of treatment were overwhelming. Chemotherapy had left me suppressed
emotionally, physically in agonising pain, brain dead, fatigued and dissociated
from the self I knew. I was hospitalised with Sepsis three times with heavy
antibiotics and blood transfusion. If chemotherapy was killing the cancer
cells, it was killing billions of good cells to achieve that aim. Ella, my
daughter, who was only 3 at the time was my inspiration to fight, but what if I
could not make it? what if I could not be there for her? How will she cope? I
am everything to my daughter and she is everything to me. How do you explain
the implications of breast cancer to a child who is 3 years of age? ‘Mummy you
will get better’ she kept telling me with fear in her eyes. ‘Mummy, I had
breast cancer too, but now I am better and my hair has grown back and my breast
is not sore anymore’. As treatment continued I was hopeful that I would regain
my life and my confidence. I will be able to think clearly, to get rid of the
chemo brain and mental fog, the fatigue that crawled on every inch of my body,
the emotional roller coasters. Little did I know that my journey would start
only after my treatment had ended.
‘You are looking so amazing, Naz’, ‘you
can now put that chapter of your life behind you and move forward’. ‘Move
forward’ was all I heard from everyone. You have fought so well Naz, even
managed to write articles during chemotherapy. You are a role model for
everyone.’ Yet I felt at rock bottom with a mixture of fears, compassion for
others, smiles and confidence. Alone in an ocean trying to find my way to the
shore. The waves were high, they were scary, and kept pushing me back to the
deep end, no matter how hard I fought. Perhaps I need to fight harder, I
thought. Why am I depressed when I should be happy and grateful for a new life?
Someone like me should know better. Who am I? Am I the same person, or a
different one, a stronger person or a weaker one? Expectations for regaining
what was lost were overwhelming. I wanted to scream as I wanted to many times
during chemotherapy but couldn’t find my voice due to emotional numbness. I was
looking at myself through a glass that could not be broken, I could not touch
me, I did not know me, I did not know how to reach me. Everyone knew me
as a positive and optimistic person, always smiling and strong, full of
opinions and vocal. But in a paradoxical way, the fear, the agony and the pain
felt somehow to my strength, I could identify with them. They seemed to lessen
when I listened to them and accepted them. They are part of me, but they are
surely not me. I am a changing person.
What does it mean to survive? We live
with the assumption of being immortal even when we know we will one day die.
Yet the fear of our own mortality in a paradoxical way makes the battle for
survivorship harder. Fear has the power to numb our feelings when we fight it,
and it has the power to make us stronger when we embrace it. It can guide us
when helpless. It signals what is important to us, and as such should not be
ignored. How can we foster resilience in the shadow of cancer? To keep going
amid the fears fuelling every breath, for our loved ones, despite knowing we
will have to let go of what is no longer ours.
As time passed by, Ella began to
understand more about breast cancer and she now writes stories about it, she is
five years of age and a rising star. She has told us that she wants to be a
teacher, so that she can teach doctors about cancer. I cherish my moments with
her with great intensity, the emotions are overwhelming and exciting when I am
with her, because I am aware that I am not guaranteed tomorrow. I somehow have
to believe that she will be OK. As time passed by, I became determined to
translate the neurocognitive interventions I was developing in anxiety and depression
research to targeting emotional vulnerability and promoting resilience in
breast cancer. Through our efforts we were successful in obtaining some funding
to pursue research into building resilience in survivors of breast cancer. Jess
Swainston, my PhD student, is pursuing this work under my supervision. The
research prospects are exciting yet scary. I recall my oncologist saying: ‘Is
it too close to home Naz?’ But that made me more determined. After long
deliberations I decided to set up the Centre for Building Resilience in Breast
Cancer where I founded the private and closed support group: Building
Resilience in Breast Cancer. We grew from two members to over 290 members in
just three months. Along the way, I met the two sisters I never had: Tamsin and
Vicky, who run this educational support group with me. In addition to
psychological support that our members provide for each other we engage in
research led debates on advances in the psychological aspects of breast cancer
research. I have spent a life-time in education but for me the wonderful ladies
I have met through my breast cancer journey, as well as my the many thousands
of students that I have taught and the numerous that I’ve supervised, have
taught me far more than I have ever learned as a teacher, a student, and child.
There is a silver lining in everything we experience.
I have high hopes for our centre to
expand, flourish, and reach out to the thousands of ladies affected by this
deceptive silent disease. And I am somehow confident that we will achieve this
aim.