Breast Cancer Awareness Month October 2018 ~ Our stories

#MyBreastCancerTruth
#BreastCancerAwarenessMonth
#BRiCMembers 

DAY 1

"There is no going back.."

I had no idea that a cancer diagnosis would be harder emotionally than physically!

The physical effects of a cancer diagnosis are well known...hair loss, nausea, fatigue, surgical scars etc. People sympathise, tell you your hair will grow back, you’ll be through it in no time.

What they don’t realise is that in many respects it’s harder after treatment finishes, they assume things start to go back to normal.

But, it’s then it hits you.........like a freight train. Everything you thought you knew about yourself is open to questioning, all your hopes and dreams, everything you had mapped out for your life ahead is gone. Your trust is your own body is shattered. A new life has to be mapped out. And often without support from family and friends who assume you are “back to normal”. Only there is no going back...

No Going Back ~ Marion

DAY 2

These kind of chain messages do not raise awareness of breast cancer...

****** "Hey, I have a favour to ask for Breast Cancer Awareness month! Could you put a ❤ on your FB wall, without comment, only a heart, and then send this message to your women contacts? This is for women to remember it's the week of breast cancer prevention.
Hold your finger down on the message and hit forward. ❤" *******

A pink heart won't help. Neither will a cryptic status game about the colour of your bra or where you leave your handbag .

It's done with good intentions, but it does not raise awareness. In fact, it trivialises breast cancer. if you want to raise awareness, do something real, donate to charity or volunteer and most importantly check your boobs regularly. Please don't follow this chain mail activity. This is a far better way to raise awareness...

Breast Cancer is No Game ~ Vicky

DAY 3

"When I express fear about my cancer returning please don’t dismiss it. Listen to my words, hear me."

Living with cancer or the risk of its recurrence is not the same as living with random risk. It doesn’t feel the same.

Before my cancer diagnosis I used to worry about things that might happen. The fear that you live with after cancer is not just fear of what might happen but fear of what has happened already.

Please don’t compare the risk of random things happening with the risk of cancer returning. It reduces our experience to an unlikely event but it’s one we have already experienced and suffered through. We’ve lived through it, but we don’t get to know if that part of our life is over or if this is just a temporary calm before the storm returns.

Life is so precious and I want to live my life as fully as I can, but part of my experience has been about acknowledging my fear, pain and distress. It helps me when others validate my feelings rather than comparing it to random risk. I’m doing a pretty good job of not being hit by buses... but avoiding cancer recurrence feels like something that’s beyond my control. So much of this experience has been beyond my control which is why I need to make my voice heard.

When I express fear about my cancer returning please don’t dismiss it. Listen to my words, hear me. This part of having cancer feels so difficult but try to understand my reality. It is a reality shared by many and that shared understanding has guided the navigation through dark thoughts and difficult days. The fear is real and it can be isolating. If I open up to share my fear with you please don’t shut down the conversation with your words. Be there with me and try to understand my truth.

The Bus Theory ~ Fiona

DAY 4

"Behind my smile, I still have the pain, scars, sleepless nights and fear of a reoccurrence."

Three years ago I was thrown into a world of decision making and self-advocacy - whether it was a balance of quality or quantity of life, threatens over you whilst medical teams and family each provide their opinions.

But then you make it through and become ‘survivors’ (thrivers in my world). Everything should be back to normal afterwards but instead it is a ‘new normal’.

The treatments that saved my life, have long-term side-effects that were left out of conversations when I was figuring out my options!

People say - "Bal you are always smiling, full of energy, so you must be over it." And so I smile!

You never get over it, as I say to people - "Behind my smile, I still have the pain, scars, sleepless nights and fear of a reoccurrence."

It’s part of my DNA - so I smile.

I am in pain with side effects - so I smile.

I look in the mirror each morning and the scars are constant reminders - so I smile.

I look at my hair, even after three years, it's not the same long hair, shiny and thick - so I smile.

I have gained weight - so I smile.

My bones ache, lack of oestrogen - so I smile.

I don’t recognise my body or self image - so I smile.

I can’t make long term plans because of fear and anxiety of the unknown - so I smile.

My heart cries inside me - so I smile.

I know the future is uncertain - so I smile.

‘'This is me.’'

Hidden Behind my Smile ~ Bal

DAY 5

"..I don't have any family history........ I was pregnant, I am an Asian (British Bangladeshi), I have been consuming turmeric...... since about one year of age and most of all, I am a doctor......"

Cancer can happen to anybody, at any time of our life. Naturally, we don't believe this unless it appears in our life.

I never imagined that I would get breast cancer because I don't have any family history, (not any type of cancer), I was 35 (first time) and 36 (second time), I was pregnant, I am an Asian (British Bangladeshi), I have been consuming turmeric through different types of food since probably one year of age and most of all, I am a doctor (as if doctors are banned to become ill!) I also breast-fed my twin daughters. So I, totally forgot about the necessity of examining my breasts! My orthodox view subconsciously predominated somehow.

Sigh...I felt stupid to think about all these criteria when I was told I had a Stage 3, highly aggressive breast cancer during my pregnancy! I was surprised to discover how many Asians were, and still are getting breast cancer every year. How many pregnant women felt shattered when they heard the word " breast cancer"? I felt numb sitting on the other side of the consultation table, I never thought about that scenario in my life, not even in simulation cases, so it was not taught!

I felt disconnected from my professional world straight away. I found out so many doctors had already gone through many other devastating situations after being diagnosed with cancer. I have bought so many books written by them. I was even unaware of Breast Cancer Awareness Month - October! Such is life.

I felt devastated when another primary cancer was found in my other breast six months after finishing active treatment. Yes, you heard it right. So I was back on track. Until now no cause has been identified apart from unknown insignificant genetic variation! Even the geneticist doesn't know what that means!

The good news is that I finished active treatment in mid-June this year. My little one is healthy and a bit cheeky and most importantly, I will be returning to my work very soon.

The Breast Cancer Criteria ~ Shampa

DAY 6a

"The one thing I wish I'd known then, was that I'd still be able to have children after treatment, to be a mum."

I was diagnosed with stage 2b breast cancer aged 33, less than a month after becoming engaged. The one thing, more than anything that I wish I'd known then, was that I'd still be able to have children after treatment, to be a mum.

I had no idea that cancer treatment could have such a huge long-lasting impact on your entire body and when I found out about the potential impact on fertility, it was by far the worst part of the diagnosis. I remember my oncologist rolling his eyes when I asked to have goserelin implants to protect my fertility during chemotherapy. He told me that I could have them but that “they were unlikely to work.” He missed the point. I needed to know that I had done all I could, I needed to have hope.

We were fortunate enough to secure a free round of IVF on the NHS prior to starting chemotherapy. I'll be forever grateful to the NHS for this. Fertility issues in cancer patients needs to be talked about more (I initially found out about it from a colleague). Patients need to be aware of their fertility options, to have choices, to have treatment based on their values, to have hope. Knowing we did all we could to preserve our fertility helped us to come to terms with the sense of loss. The truth is, I still don’t know if I'll ever be a mum but I do know that we did all that we could to ensure it might happen and that has given us hope. Never underestimate the power of hope.

On the day I agreed to write this, I had my annual check-up. It's a day which evokes fear and one I always struggle with. Walking home from the appointment, it started to rain and when we were approaching home, my husband noticed a rainbow emerging from the storm clouds and the end of the rainbow looked like it was on our house. A gentle reminder that there is colour in every cloud.

For me the colour of this storm has come in many forms - from the kindness of the IVF clinic in reorganising appointments so I didn’t have to have the operation on my birthday to the support of friends, family and strangers in my latest fundraising event, to the unwavering and amazing support of my husband who actually looks for rainbows in every cloud.

Ultimately, I think that cancer was my body’s way of telling me to slow down, to step back and to make some changes. It made us reprioritise our values and really think about what we wanted from life. It has helped me to find an inner strength I didn’t know I had, to trust my instincts, to fight for what I needed. I respect my body more, battered and bruised though it may be, it got through it. It is inevitable that a traumatic experience shocks you to the core, and when the shock of the event is over, things are different. Things will always be different. The cancer experience will always be a part of my life, it has influenced every part of me.

There is Colour in Every Cloud ~ Katie

DAY 6b

I  thought I knew guilt until I got breast cancer.

I was raised a Catholic and I thought I knew about guilt but getting a cancer diagnosis takes it to a whole new level.

It started when I saw my partner’s face when we got the diagnosis. I have never seen him cry before and that’s when the guilt hit me.

I felt guilty that I was causing him, my son and my family so much distress.

I felt guilty because I wondered if my lifestyle choices had contributed to me getting cancer.

I felt guilty that I was taking up time asking members of my team so many questions when they were busy dealing with other patients.

I felt so guilty the times my partner found me sobbing my heart out because I was trying to spare him more worry and concern.

I felt guilty that after surgery my partner had to run around doing things for me because I couldn’t do them for myself. This trebled when I had chemotherapy and couldn’t get out of bed, or at times even sit myself up.

I had chemotherapy three days before Christmas. I felt really guilty that even though I could barely stand up, I pushed through and tried to give everyone a good time but ended up losing my temper over something really stupid.

I joined a support group and felt guilty that I hadn’t had such a hard time as other people - I didn’t lose my hair, I didn’t have to take tablets and suffer the side effects for the next ten years to control my hormones because I had triple negative breast cancer.

I didn’t have young children that I might end up leaving behind.

I already took tablets for pain control which knock me out at night so I sleep well most of the time.

I didn’t have a mastectomy.

I won’t have to deal with returning to work because I already have other health conditions that mean I am unable to work in the first place.

I don’t have a terminal diagnosis.

The list is endless and it’s exhausting.

To anyone else who finds out they have cancer, I would say accept any support you can get without guilt because none of this is your fault. Everyone with this horrible disease needs all the help they can get and no one is less deserving of support than anyone else.

Full of Guilt ~ Sue

DAY 7a

Breast Cancer Awareness Month - what we think and how we feel #OurBreastCancerTruth

In our weekly discussion, we explored our conflicting thoughts and feelings about October (Breast Cancer Awareness Month).

Read our discussion summary here: https://bcresiliencecentre.blogspot.com/2018/10/weekly-discussion-summary-breast-cancer.html

This is what we think, this is how we feel ~ BRiC Members

DAY 7b

I’m not brave. When I was told my treatment for breast cancer might take up to a year I just couldn’t imagine I could do it. I’d heard about people being brave when faced with cancer while others lost the battle. I’ve never thought I am in any way extraordinary. Would I be the one who couldn’t fight hard enough?

But I did it. And people even said I was brave. I realised that those of us dealing with cancer are all brave because we are dealing with something most people are afraid of. It’s not a fight. We cannot choose whether we will “win or lose” but along the way we will meet extraordinary people who will use their medical skill to help us through and to do everything in their power to care for us and whenever possible cure us.

It’s now four years since I was diagnosed. I’m not the same person I was before. I’ve lost friends who couldn’t, for whatever personal reason, stay the course. But in their place I have found others. And the best thing? However terrified I am I realise that in some small way we are all brave and extraordinary because we have no choice.

Brave? ~ Penny

DAY 8

Why aren't you running marathons
Or climbing mountains high?
Why aren't you trekking foreign lands
Or jumping from the sky?

Why do you just sit quietly
And watch the world go by?
You know your life's not infinite
You need to laugh, not cry.

You never come to parties
Or join in big events
I don't know why you're hiding there
It really makes no sense.

Your cancer gives a second chance
A timely wake up call
To go on more adventures
Get out there, see it all!

You need to write a bucket list
Of lots of things to do
Then tick them off, one by one,
Make sure it's really full!

My bucket isn't empty,
In fact, to me, it's full.
You might not see what's in it
But to me it's beautiful.

My bucket's full of love and joy,
There's trees and sky and flowers,
There's family, a crazy dog,
And books to fill the hours.

A sunrise I can cherish
On my doorstep, just outside.
And in my garden squirrels play
And rabbits run and hide.

I hear the birdsong when I wake
The butterflies fly near
And when the twilight ends the day
The sunset glows, right here.

Why don't you do more, take a chance,
And fill life full of stuff?
I do, I say, with things I love
For me, peace is enough.

The bucket list ~ Anita

DAY 9

I never knew...

That I would play down what was happening to me to spare my family’s feelings and make them feel better.

Internalising how I felt was not a positive approach.

How I looked externally bore no resemblance to what was going on inside my head and my body.

Coping with your constant fears and anxieties on your own is a lonely path.

It’s OK to admit how you feel - you don’t have to always be the ‘mother ship.’

You don’t have to always be the ‘mother ship.’ ~ Jennie

DAY 10a

I didn't want to know anything about the cancer when

I was diagnosed.
I just wanted it gone.
I didn't want to know how big the tumor was.
I just wanted it gone.
I didn't want to know how long I had had it.
I just wanted to know when it was being taken away.
I didn't want to know the treatment plan.
I just wanted to know when it would start.
I didn't want to know how long the operations would be.
I just wanted to know I would wake up.
I didn't want to see my scars
I just wanted them to go away
I didn't want to what the statistics were.
I just wanted to know I would be in the positive ones.
I didn't want to tell anyone.
I just wanted to scream the horror of it to the world.
I didn't want to be thought of as brave,
I just had to get on with it
I didn't want to to think of myself as being unlucky.
I just thought why not me?

I Didn't Want to Know ~ Andria

DAY 10b

"My GP knew about the type and grade of cancer 23 days before me."

At my first appointment, the surgeon asked if I wanted his opinion. Being me, I wanted every detail. He told me he thought it looked suspicious. Having this information enabled me to start preparing myself in case it was bad news.

After looking at the mammogram, the radiographer said "Can't say if it is or isn't cancer." Two weeks later, he told me I had a little bit of cancer, that I'd come in for an operation the following week and I'd be cancer free that evening! When I asked what type, he replied that all cancers are invasive. I thought perhaps they didn't have any further information.

I then had to wait 22 days for the results following surgery.

My surgeon told me, "Of course we already know it's a grade three tumour." That was news to me. I didn't question it at that time. He then told me it was ER/PR negative but Her2 positive and that I would need chemotherapy, radiotherapy and Herceptin. You could have knocked me down with a feather because the radiographer suggested it wasn't that much to be concerned about.

I was not copied into GP letters so I was unaware what information had been given to my GP. I had raised this with my BCN who suggested a summary letter at the end of my treatment might be helpful. I got a copy of a GP letter when I was going home - it told me my GP knew about the type and grade of cancer 23 days before me.

As well as having to tell my elderly parents about my cancer I was very distressed at being the last person to know what was happening to my own body. I think the surgeon presumed the radiographer had told me more than "a little bit of cancer".

After a second operation, with no sleep post surgery, I finally had a meltdown. My frustrations about the lack of information sharing came pouring out - not being copied into GP letters, not being advised of the information from the first biopsy and not having copies of my pathology results. This made me feel all that mattered was dealing with a diseased breast with no regard for the needs of the person attached to it.

My BCN tried to pacify me by saying that the information in the GP letter was provisional, that grades may change following surgical excision and therefore, this information was not always given. I replied that I fully understood what provisional meant. If there is information about my body, I want to know in a timely manner.

I coped well with the fact I had cancer. I wasn't shocked as I thought it was probable the lump was malignant. What caused me distress was not getting information at the level of detail I needed, or in a timely manner. When you have cancer, you have to give control over and you have to trust the healthcare professionals looking after you. Not being given the information, or healthcare professionals deciding how much information to give me, has left me with some trust issues with those involved in my care.

On a positive note, My BCN and surgeon listened to me and asked what they could do to help. I explained that I needed the same level of information as them. This was about me. When I got my pathology results, I discovered that the DCIS was a high grade. Whilst this did not impact on my treatment, it further impacted my perception of the seriousness of my cancer and could have potentially influenced my decisions about treatment.

I still sometimes have issues with getting the information I need. I have learnt to be more proactive with healthcare professionals and I ask to be copied into all GP letters, or to see my heart scans.

I only learnt that there were surgical markers left inside my body after asking to see my CT scan when I had radiotherapy. Whilst this is routine, I would have liked to have been told about this.

I plan to make a subject access request to see all of my notes. Sadly, I'm a healthcare professional and it disappoints me that there is still some way to go before the information needs of people with cancer are fully addressed.

No information about me without me ~ Anon.

DAY 11

"I didn’t know that after going through treatment and being given the all clear, it could still come back."

I used to think breast cancer was just breast cancer. I never realised that it can be invasive or non-invasive, and ductal, lobular, inflammatory etc, and that it can be triple negative, or hormone (oestrogen and/or progesterone) positive, and/or HER2 positive.

I didn’t know there are different stages of breast cancer, from stage 1 to 4, according to how much it’s spread, and that there are also different grades (how fast it can spread) of breast cancer, from 1 to 3.

I used to think that treatment consisted of maybe surgery and either radiotherapy and/or chemotherapy. I didn’t realise that there are many different chemotherapy ‘cocktails’ used to treat breast cancer, and that a particular ‘cocktail’ can stop working so that another has to be tried.

I never knew that there are other treatments such as long courses of injections for HER2 type cancers, and for hormone positive breast cancers there are years of taking tablets to suppress hormones.

I thought that treatment might make your hair might fall out and you might feel sick, but didn’t know about neuropathy, lymphoedema, heart damage, joint pain, hot flushes, or any of the other side effects of treatment, some of which persist long after treatment has ended.

I didn’t know that after going through treatment and being given the all clear, it could still come back.

The Learning Curve ~ Sheila

DAY 12

"So cancer you see, is more than an op, more than a disease, it’s a killer of faith, it’s a killer of the old me, it’s a killer of carefree days. It’s a killer! We know and we fear, even if like me, you’re 'lucky' and still here!

Fear

Not sure, where this came from but it's my truth.

I found three very small lumps, one no bigger than a decimal point. She said "but I am certain I have got it all."These words bounced around in my head. Thank the Lord, I thought as her continued words. I fell mute. How lucky am I? It was found. Did it really happen to me?

Mastectomy came screaming through my minds haze and forced to me to catch her gaze......Mastectomy?

You said you were certain, you had it all. Seems I was not so ‘lucky’ after all. The lumps it seems are merely a pointer to the disease growing in me. Cell changes it seems are ganging up on me and forcing the need to take that most womanly part of me.

My truth = FEAR.

I recount this time of diagnosis as it was from this point on, I had no idea what was happening or why. I was lost in a fog, I couldn’t digest any information given to me.

They didn’t listen when I complained of the itch. They didn’t listen when I complained of the leak. They had no concerns, so neither did I.

The truth of course, is that they don’t have any concern. They’re alright, it’s not happening to them.

I’m still in that fog. My mind just hasn’t coped. The Mmachines they rely on said all was clear. No need to listen to my fear, and with NED (no evidence of disease) in my other breast, they chose to lay my fear to rest.

The deed was done and I lay bereft. But all was good, with just the loss of only one part of my womanhood.

Everyone tells me, how lucky I am - it’s all over now, no chemotherapy, JUST an op! But then just a week away, I'm told 6 large tumours were found in the tissue they took away, that chemotherapy may be on its way, the machines were wrong! No apologies were made, though promises broken. So many fears are awoken. My smile is broad and I nod my head, they have no idea, inside I’m dead.

I’m scared. I’m worried. I’m always at risk.

From the medics to your loved ones, no-one listens. No-one hears, no-one wants to know your very real fears. Inside I go, my worst but only retreat whilst I smile and seem so upbeat.

Medics deal with the disease. Family and friends hold your hand but the FEAR is left to grow and grip. So cancer you see, is more than an op, more than a disease, it’s a killer of faith, it’s a killer of the old me, it’s a killer of carefree days. It’s a killer! We know and we fear, even if like me, you’re 'lucky' and still here!

Fear ~ Cheryl

DAY 13a

Secondary breast cancer is not just one day, it is every day

Secondary breast cancer is the focus for awareness-raising for only one day (today) out of the thirty-one days of October. (Breast Cancer Awareness Month). Yet most people do not know what secondary breast cancer is.

Most people do not know that:

- secondary breast cancer doesn't mean getting breast cancer twice.

- secondary breast cancer is not a less serious breast cancer.

- secondary breast cancer is incurable.
Treatment aims to slow down the spread of disease, relieve symptoms and give the best quality of life, for as long as possible. Some people live years, but only if they can access the best treatment possible, as early as possible.

We sometimes read that it is not primary breast cancer that kills, but secondary breast cancer. The problem is, this way of thinking makes it appear that secondary breast cancer is a completely separate disease. It is not.

Women with secondary breast cancer were once women with primary breast cancer (unless they were diagnosed with secondary breast cancer at the same time as their diagnosis with primary breast cancer). Secondary breast cancer is breast cancer which has spread to other parts of the body. It is sometimes described as 'stage 4 breast cancer', 'advanced breast cancer' or 'metastatic breast cancer'.

It is thought that around 30% of women diagnosed with primary breast cancer go on to develop secondary breast cancer. Sometimes their disease cruelly returns years after the initial diagnosis. This is a very frightening possibility for those of us diagnosed with primary breast cancer, so frightening that a lot of us try to avoid facing our fear that our cancer might come back.

But sweeping secondary breast cancer under the pink carpet does a disservice to us all. Especially to women living with secondary breast cancer.

As secondary breast cancer receives even less attention for funding, it is imperative that our psychological needs are met and our voices are heard. Women with secondary breast cancer need women with primary breast cancer to support and advocate for them; women with primary breast cancer can be supported by, and can learn from other women with secondary breast cancer. Here at BRiC, we do not see primary and secondary breast cancer as separate entities, but instead, as being on a continuum, where a better understanding of both our common and specialised needs can foster greater mutual support and learning as well as advocacy for improved treatments.

Here at BRiC women with primary and secondary breast cancer have come together in unity, a collective of individual voices sharing our truths for our #MyBreastCancerTruth project.

Thousands of women are living with secondary breast cancer. Women like our very own and amazing Vicky and Caroline as well as many, many of our members. For these women, secondary breast cancer is not just one day in October, it is every day.

Secondary Breast Cancer is Every Day ~ BRiC

DAY 13b

"I don't feel very lucky as I have secondary breast cancer in my bones, liver and peritoneum."

"Breast Cancer is the better one to have." "You're lucky it's breast cancer and not one of the other ones." We read it, we hear it, there was an advertising campaign from a different cancer's charity with the slogan - "I wish I had breast cancer".

I don't feel very lucky as I have secondary breast cancer in my bones, liver and peritoneum. Secondary breast cancer has an average survival rate of three years and even though it's treatable, it's not curable and so investigations, treatment and research tend to be pushed to the back of the queue.

I was diagnosed with secondary breast cancer 3.5 years ago at the age of 40. My life expectancy should be around double the number of years I've already lived but unless there's some miracle, the chances of me still being here in the next few years are very slim, although not impossible with the right treatment. I have two young children and I deserve to see them grow into the amazing adults I think they could be and they deserve to have their mum around to help them grow.

Breast cancer shouldn't be seen as the better cancer to get. It still kills people once it gets to Stage IV and it needs more attention! I am far from negative about my situation but sadly this is the reality and truth!

We're not lucky! ~ Vicky

DAY 14

"It takes a very, very special person to truly be able to let our emotions out and vent our anxiety, to know without asking that we are not OK and to listen."

It could be cancer or any other life changing chronic illness. As if it’s not bad enough becoming ill, we quickly learn that as well as dealing with all the physical and emotional fall out of the diagnosis and treatment we must also learn the role of the model patient. We must be “brave”, “strong”, “stay positive” as if these will wish our illness gone. We must be “fighters”, “warriors” and then we will overcome our illness to be “survivors” through some sheer kind of will power. And if we step out of this stereotype of the plucky little heroine and show our real emotions for the raw ugly mess inside, there are even those who chastise us for our “negativity.”

We quickly learn to only share our pain and sadness with a small core of special people in our lives who don’t shy away from the bad days. The day when our cancer can no longer be cured, the days when we are distraught waiting for more scan results, the tears when a good spell of health gets rudely derailed by yet another relapse. The days when we feel fat, ugly, old before our time. The days when we put our small children to bed with a kiss wondering who will be there to support them and our partners when we are no longer there.

It takes a very, very special person to truly be able to let our emotions out and vent our anxiety, to know without asking that we are not OK and to listen. To take us out and lift us with kindness and humour. We know who our core of beautiful, kind friends and family are because we can say what is really going on inside.

To all others, we smile and say “I’m fine, thanks.

I'm Fine Thanks ~ Caroline

DAY 15a

"My breast cancer truth is this – breast cancer is a lonely place."

Lonely. In a room full of people - alone. In a world of pink ribbons and races, of sky-dives and coffee mornings, isolated. Yes, there are people around me, supporting me, helping me, but breast cancer is a lonely place.

The people in my world can’t understand the effects breast cancer has had on me. The emotional and physical scars are hidden from sight, but they loom large in my head. The pain and the fear are constant companions, sometimes sitting quietly by my side, sometimes shouting loudly in my ear. The loss of my womanhood hurts more than any surgery, but it’s never talked about. Should I be grateful to be still alive? Yes, I’m sure I should. But nobody warned me that the “new me” would be so far removed from the me I was BBC (before breast cancer).

Nobody said that my confidence would take such a huge hit, that I would cry when I look in the mirror, that I would mourn the body I’ve lost, that my hair would never be the same as it was BBC, or that my eye-lashes would never be as long or as thick, that even after three surgeries my boobs would still be uneven, misshapen and numb. The list is so long that it’s easier to bury the effects and just keep pretending that everything is OK. The ongoing effects of hormone therapy, the hot flushes, the mood swings, the weight gain, the brittle nails, the aching bones, the muscle cramps, the insomnia. Small things, but so many of them that they seem enormous.

And alongside all of this - that fear: I’m NED (no evidence of disease) now, but will that last?

Everyone around me thinks it’s over, but it’s not. It will never be over. There will always be that niggling fear. A fear I carry alone, along with the aches and the pains.

I am alive, I count my blessings every day despite all of this. I have survived almost 7 years since I heard those fateful words and I hope to have many more. I have had some wonderful times and met some wonderful people because of my cancer. I have made friendships that are more meaningful than any I made BBC. I have laughed with friends at our bald heads and shared giggles as we all tried to avoid that one nurse who couldn’t get a cannula in. I have shared highs and lows with family and friends. I have found peace in the countryside. I've learned to say no to people who make demands on my time and to say yes to things I really want to do. But my breast cancer truth is this – breast cancer is a lonely place.

Breast Cancer is a Lonely Place ~ Jan

DAY 15b

"Join a local support group!"

I had never realised until I had breast cancer, just how helpful support groups are!

I'm involved in a local support group called Pink Sisters. We are an amazing group of ladies that have probably become closer than biological sisters!

I'd advise anyone who is struggling, to join a local group!

Join a Support Group ~ Rachael

DAY 16

Breast cancer is often thought of as something that only affects women, but in very rare cases, men can get it too. Around 319 men are diagnosed each year in the UK (compared to around 55,000 women).

Our focus here at BRiC, as women with a diagnosis of primary or secondary breast cancer, is on increasing our psychological and emotional resilience. Our plea for our October project, #MyBreastCancerTruth, is not only for those men diagnosed with breast cancer - who have their own very specific psychological needs - but for our husbands, our partners, our fathers, our sons and the men in our wider family and social networks.

We know from our members that our husbands and male partners play a crucial role in helping us with breast cancer. More than this, irrespective of whether partners are or are not supportive, they also need support and psychological care in their own right. This would help our partners to address their own needs, but would also help us, because we could be more open about our feelings, and this in turn would foster healthier and more mutually supportive relationships.

Men Get Breast Cancer Too ~ BRiC

DAY 17a

Random truths I wish I had known and others need to know:

- don’t put off getting lumps, bumps or odd bits checked out
- don’t go it alone, you’ll need support, a second pair of ears, shoulders to lean on
- it is sometimes easier to talk to strangers than your loved ones
- cancer does not discriminate - there’s no such thing as too young, too healthy, too fit
- you don’t have to brave
- treatment is hard but you can do it
- there will be something beautiful, magical, happy in ever single day. Look for it, even if it is just a moment
- the smallest kindness will mean the world
- treatment is just the beginning, the reality of what it all means may not sink in for quite some time
- life after a cancer diagnosis is a huge adjustment, for you, for your loved ones. Be gentle with yourself
- your priorities will change
- people will not always understand, say the right thing, do the right thing. Try not to be too disappointed in that.
- don’t put things off - just do it, say it, experience it, learn it
- in your new normal, you will still be you
- life will not be the same again
- there’s no right way to do this - but you can do this!

My Random Truths ~ Elizabeth

DAY 17b

I’m focusing on one aspect - what I’ve learned about one type of breast cancer - triple negative breast cancer.

Triple Negative Breast Cancer (TNBC) is breast cancer which has tested negative for hormone (ER/PR) and HER2 receptors. It can’t be treated with hormone suppressors or Herceptin.

About 15% of breast cancers are Triple Negative. There are probably several sub-types but research has yet to identify them.

Triple Negative breast cancer is not a good thing - just because I tested negative for something! As the main treatments are surgery, chemotherapy and/or radiotherapy, it feels like there are less treatment options (it can feel like chemotherapy or bust). It’s often very aggressive (grade 3) too which feels scary.

Since active treatment, my triple negative status means I have had no hormonal medication. To say I’m lucky not to have to deal with the (extremely difficult) side effects of ongoing medication is like saying I’m lucky not to be paying for insurance I don’t have.

And there are still physical after-effects, 3+ years on from finishing treatment for triple negative breast cancer - brain-fog; fatigue; peripheral neuropathy; stabbing breast-pain; lymphoedema risk and chemo-induced menopause are all real, ongoing effects for me - there will be more for others. Explaining them away always sounds a bit vague when there’s no ongoing treatment.

If my cancer spreads, I worry that my chances of surviving a few years may be reduced because when chemotherapy stops working there will be no more options.

BUT...

Triple negative breast cancer can also be very responsive to chemotherapy (which can in turn have a positive impact on prognosis), and those of us lucky enough to only have a primary diagnosis of triple negative breast cancer are more likely to survive long-term than not. This rarely seems to be pointed out, which I think escalates people’s fears when they hear the words “triple negative” breast cancer.

Triple Negative Breast Cancer ~ Vikki

You can find out more about triple negative breast cancer here: https://www.cancerresearchuk.org/…/triple-negative-breast-c…

DAY 18

Breast reconstruction is not "a boob job on the NHS" (or a tummy tuck thrown in for free).

There are a lot of myths out there about breast surgery and breast reconstruction which contributed to my distress and undermined my emotional and psychological recovery.

We live in a culture where women's breasts take centre stage as an erotic symbol. The size, shape and firmness of our breasts comes under constant scrutiny in women's magazines - this season the cleveage is in, the next it's the flat chest.

Ahead of my bilateral mastectomy surgery, my surgeon's focus was on the appearance of my new breasts. This attention on how my breasts would look reinforced my own sense that any value I have as a woman was bound up in my sexual attractiveness which was, in turn, bound up in having firm, bouncy breasts.

I internalised this view and it became a critical voice that berated me for any feelings of doubt I had, for my fears and the anticipation of loss ahead of my surgery.

How, I asked myself, could my breasts matter to me so much?

Until I asked, no one told me that my new breasts would feel cold to the touch, or, that I would lose all sensation in them.

So, I said nothing when my friends congratulated me on the chance to have a "free boob job", quoted so-and-so who was thrilled with their amazing cleavage, and asked me whether I had seen what's-her-name in that sexy evening dress after her breast surgery?

Let's be clear, a mastectomy is an amputation of the breast. Breast reconstruction is not the same as cosmetic surgery which enhances, not replaces, the natural breast. Breast reconstruction involves completely rebuilding the breast using skin and/or tissue and sometimes breast implants.

If we are lucky, we look great and if we are lucky, we look really great in clothes.

Breast reconstruction surgery isn't simple and it's not easy. It can be a lengthy and complex procedure. It carries risk. Because the dominant narrative following breast surgery focuses on the voices of women who are pleased with the results, the experiences of women who suffer from complications - sometimes terrible ones - are not represented. As a result, our friends and families do not understand that breast reconstruction may not be a choice that is right for everyone, that reconstruction doesn't work for everyone, or that some of us mourn our breasts deeply.

My mastectomies took away part of my womanhood. Don't ask me to pretend that it doesn't matter.

Not a boob job ~ Anon

DAY 19

"I'm still getting through being treated for cancer."

When I was first diagnosed with breast cancer and given a treatment plan, I got my diary out and wrote down all the appointments for chemotherapy and radiotherapy, thinking that I would be able to identify exactly when I would no longer be a cancer patient and go back to my life and being "me."

Little did I know just how naive those thoughts were. Because going through treatment for breast cancer never really finishes, no matter what the oncologist or surgeon tells you.

Four years later and the clinicians are delighted that my drug regime is classed as preventative for any future growths. I'm classed as NED - no evidence of disease - so in terms of success they've done their job well.

Except that having no oestrogen in my body means I feel like the old lady I prayed to become when I was first told I had cancer - my bones ache, my skin is dull, my clothes don't even attempt to fit me, my husband knows that intimacy is rare due to the physical, raw pain it causes me.

Except that every ache triggers a fear of secondary growths. A headache? Must be brain mets [metastasis]. A sore back? Must be bone mets.

Except that I always need to know where the nearest loo is - my bowel habits are best described as unpredictable. It's amazing that I've never received a speeding ticket for the number of anxious times I've literally raced home or frantically searched out a restaurant where I could dash to their toilet.

Except that I get a horrible, panicky feeling every time I try to plan more than a few months ahead, because I know too well how quickly those plans can have to change.

Except that I worry every day how my adult children will cope if I'm not here. Or wonder how long my husband will wait before starting another relationship and whether he will love her more than he loved me.

Except that I also make sure that I say 'yes' to every opportunity I'm given. I don't worry so much what other people think of me. I tell people that I love them. I'm more forgiving of myself and others.

I'm still getting through being treated for cancer.

The gift that keeps on giving ~ Suzanne

DAY 20a

It may be full of the most amazing and inspirational people but it's a club I never expected to join.

When I felt that grape sized lump in my armpit - while waiting for a breast lump to be investigated - I knew this time it wasn't a cyst.

I wasn't wrong.

It's been caught early they said...I later discovered (only because I asked) that it was 'about 8cm' and very aggressive.

It's been a whirlwind of a year with scans, treatment, sepsis as well as surgery and finally celebrating the 'complete pathological response' that a grinning doctor explained to me.

I've been lucky. A friend was far less so a decade ago. I remind myself of that when I hurt; the pills I have to take to improve my prognosis have aged my body by a couple of decades - 20 pills a day is the new norm for me, most are to counter the side effects of one tiny pill that's controlling my oestrogen levels.

But...take them I will, as I want to live long enough to see grandchildren which, sadly, my friend didn't. Her first - a lovely wee granddaughter - was born this summer. It was an emotional time hearing that news; bitter-sweet, remembering evenings spent with her, knowing her regrets that she'd never see her kids grow up to marry and be parents.

I'm forever grateful to those who have discovered new treatment options and those who have undergone trials that allow these new drugs to be available. If not for them I'd be pushing my luck to see another summer.

Sadly, an increasing number of friends are being diagnosed with various cancers and I can't help think that much of that is down to the peak nuclear testing period 1961-1962 during which I - and many of them - were born. That crazy disrespect shown for our planet just beggars belief!

Isn't it reassuring that our world leaders these days are far more sensible.....

The Club I Never Expected to Join ~ Janice

DAY 20b

"Hmm, well I was wondering if you were wrong about being terminal as, well, you're still........alive!!"

I've been thinking about what I wish people knew about cancer and it's treatment. I've written down some things that have been said/asked to me. I'm sure I'm not alone but they made me think...did I know these things six years ago? Honestly I may think I did but I'm not certain I did:

- So you're not on chemotherapy anymore, you're all better now?

- But how can you be on chemotherapy if you've got hair?

- What do you mean it's your ninth different treatment?...I thought chemo was chemo, I didn't know there were different kinds!

- So what are you celebrating?

It's been 2 years? Hmm, well I was wondering if you were wrong about being terminal as, well, you're still........alive!!

After having no hair then it growing longer than an inch.....
- Your hair is growing great, I do think you really suit a bald head though.

After having a drink after months of being sober.....
- So is it OK to drink alcohol as they are linking that to breast cancer now?

Looking at my boobs.....
- So are they yours ?

- I don't want to get old!

What Did You Say? ~ Dawn

DAY 21a

"I don't know what is at the bottom of the next dip, however, in the meantime l'll enjoy the ups and downs of the ride but I will also allow myself to scream when I need to."

"Life is like a roller coaster ride. It has it's ups and downs. But it's your choice to scream or enjoy the ride" - a well known expression. However since the dreaded words "it's cancer" my life is like living on the biggest roller coaster ever.

Before my diagnosis life was good. My family and friends were all healthy and happy and I had just secured a new and exciting teaching post. I was on a high. Then very rapidly with diagnosis my life went down into a deep dip. I basically stayed in this dip whilst my care team did their amazing work of chemotherapy, surgery and radiotherapy.

As the end of active treatment approached, my excitement began to build. I was heading towards a high. But no, I just felt like I was dangling in mid-air. Return to work, get back to normal I thought. But very quickly I realised I couldn't 'just get back to normal'. So life continued with challenges of fatigue, hot flushes and joint pain from hormone therapy, lymphoedema, a lack of confidence, the sadness of losing friends to this dreadful disease. And the huge and very real fear of recurrence.

In time though, I stopped grieving for what I had lost and began to really appreciate what I still had - time with my wonderful family and friends, the beautiful coastline where I live, the joy of reading a book curled up in the garden and the many more pleasures that life still holds for me. At last, I was on my way back up, I was finding and beginning to enjoy my 'new normal'. I still have days where I dip, the effects of a diagnosis, losing friends and reoccurrence fears never leave you. However, I embrace these days too. I stay in my PJ's, I cry, and I soak in the bath because I know that tomorrow will be better and I will be on my way back up again.

I still cannot look too far ahead because it's scary. I don't know what is at the bottom of the next dip, however, in the meantime l'll enjoy the ups and downs of the ride but I will also allow myself to scream when I need to.

The Cancer Rollercoaster ~ Suzanne

DAY 21b

The dates that changed my life:

April 29 2015: I got a letter after my routine mammogram informing me that I needed to attend for a follow up check the next day.

April 30: another mammogram confirmed what was suspected - I had two small abnormalities about a inch apart and an enlarged lymph node found by ultrasound. Three biopsies later, I went home to pack feeling extraordinarily calm. We were flying out to Italy in three days time for a ten day holiday - a great way to pass the time until I had to go back for the results. Amazingly, we somehow managed to have a fantastic time.

May 14 2015: confirmation I had cancer. We talked through the surgery with the surgeon - I’d need a complicated mammoplasty (because of the position of the tumours) and a level 2 axillary node clearance as one lymph node had tested positive.

All the while, I felt amazingly calm as if it was all happening to someone else.

June 9 2015: I was up early for the 26 mile drive to Truro to have radioactive pellets put in each tumour to make them easier to identify. No local anaesthetic. I was fine in the car for the trip back to the hospital where I was having the surgery but my poor husband was trying to hold it together for me. I tried to send him home but he insisted on stoically sticking by my side until I went down to theatre. I think it is much worse for those waiting than for those actually having the surgery.

I don’t actually remember much, not even my husband explaining I hadn’t needed the extensive surgery as the surgeon had removed everything through one wide local excision (even my 15 lymph nodes, just below my arm pit.) The worse bit was the excruciating burning, tingling and numbness in my arm due to nerve damage from the auxiliary node clearance. Nothing prepared me for the awfulness of the nerve pain (which is not commonly suffered.)

20 June: at my follow up appointment my surgeon suggested a neuropathic pain killer pregabalin - which helped a lot because I could sleep at night. This is a wonderful drug but addictive and you have to be weaned off it gradually (another thing they didn’t tell me.)

17 August: started radiotherapy which involved a daily 52 mile round trip drive to Truro. This sometimes took 4 hours.

Once I finished radiotherapy in mid-September, I completely went to pieces. Having coped and held it together for five months whilst on the treadmill of appointments and treatment I was suddenly at a loss. What now?

My family were fantastic and supportive - my husband, sons and daughter in laws were brilliant but I disintegrated into a weepy, soggy blob. No one tells you that this is quite common. I was referred for counselling but as I wasn’t suicidal, I didn’t qualify!

Three years on, I still have scanxiety every June before my annual mammogram. I push negative thoughts to the back of my mind and strive to be positive. But everyday there is a little niggle - What if? like a butterfly fluttering in the background of my life.

I suppose it will be there forever

The Fluttering Butterfly ~ Josephine

DAY 22

I was given the earth shattering news that for the second time I had breast cancer in 2016.

Eleven years earlier, at aged 28 I thought I pretty unlucky to get this news first time around.

This time was different - the fear was different.....

I was now a mum of 2 beautiful boys aged 2 and 3. The fear of what I was about to put them through. The fear I may not survive this time and the biggest fear that they may grow up with no memories of me or how much I love them (this is still my greatest fear).
The fear of what was ahead of me - how awful the treatment was, how ill it had made me last time. The fear of whether I could do it again.
The fear of the future, of what I was putting my loved ones through AGAIN.
The fear that our lives might just become about the cancer, that it was defining me, my marriage, my family. I had thought I’d survived it - I was one of the lucky ones, but now it seemed the cancer was back in charge.
Everyone told me how strong, brave and courageous I was.... I didn’t feel it. I was scared, anxious, vulnerable, but just trying to put my head down and get through it. I guess this came across as strong or brave.
Those that were able to see my fear, to reach out to me at these times and support me at my lowest gave me the strength I needed.... and still do.

Facing the Fear ~ Becky

DAY 23

"I wish mine [breast cancer] hadn't come back but it isn’t an immediate death sentence as we can live with it..."

I thought when I first had cancer that it would never come back.

Unfortunately, it did 2 and a half years ago but this has made me a stronger person than I was before. I try to remain positive and try to live a normal life as possible.

I’m also part of the pink sisters. This support group is amazing and has brought us all so close that we are like one big family.

I know people are scared of secondaries and I can totally understand that. I wish mine hadn't come back but it isn’t an immediate death sentence as we can live with it and hopefully although I can’t be cured we can keep it under control.

It Came Back ~ Janette

DAY 24

It is too easy to say that ‘I didn’t have it bad.’

Unfortunately, this was how I viewed my breast cancer diagnosis in 2012 and it was a close to denial as I could get. I caught it early, I only needed a lumpectomy, I only needed radiotherapy and I didn’t need chemotherapy. I can look back now and know that this created a problem.

I became single and the following 12 months saw me doing so much - I repainted and refurnished my whole house, finished a campervan conversion and then it just started to slide……………

I had a second diagnosis of breast cancer in 2016. “Only” DCIS or as one consultant said to me “the best cancer to get.” A second diagnosis and in the other breast. I chose a double mastectomy without reconstruction.

I have only recently learnt about secondary cancers and I am terrified……… I have no family history and I got it twice………

I have unravelled, although I am still trying to hide it and where I can’t hide it, I hide the severity – it’s just easier all round for everyone.

It has taken me a very long time to fully understand and accept, but I am getting some professional help.

There is not enough support for us to deal with the mental health impact. The system is reliant on individuals asking for help and there are so many flaws with that approach.

There needs to be more signposts to support groups, networks, etc.

We Are Worth It ~ Carol

DAY 25

Looks can be misleading with metastatic breast cancer. Some days I feel a fraud as I look so well. People are surprised when I say I'm 59 as I look alot younger than my chronological age. When I am so tired I can barely get out of bed I am reminded I am not a fraud.

I feel fortunate that my cancer is oestrogen positive as there are many treatment options. I am on a new breakthrough drug and hoping it will slow progression for a long time. In the meantime, I am determined to live my life as fully as possible.

Looks Can Be Misleading ~ Janice

DAY 26

What I’ve learned about cancer:

With a physical diagnosis of cancer comes an emotional diagnosis as well
Having a cancer diagnosis is not automatically a death sentence (when I was initially told I really thought that was it for me!)
It does not discriminate - I was a healthy active young 45 year old
It never leaves your side, but you learn to cope with it and maybe ignore it a bit more each day
You will lose friends along the way - they don’t know what to say; they give you looks of pity when all you want is strength, or they may promise things and don't deliver
You will find friends along the way; maybe ones you haven’t spoken to for a while step up and understand. Maybe you find new friends through the shared experience whether online or in person
You realise that losing your hair to chemotherapy is a big deal, maybe bigger than you thought at first. Yes, it will grow back but whilst you are bald you are not yourself, you are not you!

What I hope from having a cancer diagnosis:

I hope to be stronger and more understanding for the friends, family and strangers I will meet along the way who will inevitably and unfortunately face a similar diagnosis
I would like to be able to speak to them as a person and not look at them as a patient or wonder what I should say
I hope to enjoy the little things that are so important
I will slow down because I have to - damn you anastrozole - and not rush so much
I hope to continue seeing more and more people living with cancer than ever before live long and happy lives
I hope we find new ways to detect and treat cancer so that we don’t need to suffer through the gruelling treatment
I hope I live a long and happy life and see my children grow into adults
I hope to one day sleep a whole night.

My Lessons and Hopes ~ Tracey

DAY 27a

When you think the worst thing that can happen to you has happened, it can get even worse - my Dad dying a week before I found the lump. I coped with funeral etc and then faced the diagnoses of breast cancer.

I got through it. I cried and I was never sure if it was for me or Dad.

I felt guilty as I was causing my family extra stress at a time when they’d had this awful blow.

People didn’t know what to say to me. I could empty a room in minutes. I was open and honest with everyone. I made new friends and lost some old ones along the way.

I went back to work as a teacher and life was good.

Then WHAM a routine mammogram and a re-call to hospital (three letters were waiting for me after a once-in-a-life time trip to Antarctica).

After 16 years, it was back. This time it was different. I was stronger in myself. I wasn’t ready for it but I knew what to expect. This time it was a mastectomy and no treatment afterwards, apart from Letrozole.

So here I am 72 years of age. Tired, achy but living life to the full. A different ‘full.' Learning to pace myself. Only planning one thing a day. Some days not wanting to do anything at all.

I’m still learning!!

What Cancer Has Taught Me ~ Rhian

DAY 27b

Before I had breast cancer I had never really thought about it and had never been great at checking my breasts. A simple post on Facebook from someone who had found a lump caused me to check myself. I was surprised to find a lump but couldn’t get to the doctors for a whole week to get it looked at.

Little did I realise that there is lots of waiting on this rollercoaster ride.

The doctor agreed there was definitely a lump. Then followed a two week wait after a referral for a mammogram and ultrasound scan. I remember lying there for the longest time while the sonographer waved her magic wand and finally determined another lump hidden behind the lump I had found.

I remember......

.......hearing the words "We need to take two biopsies" and her showing me the biggest needle I’d ever seen......
.....the local anaesthetic which didn’t seem to do anything......and the pain from the first biopsy causing me to swear loudly under my breath...... and knowing this was going to be repeated imminently for the second lump........ the friendly nurse who pressed on my boob to stop the bleeding....... The joy of having another mammogram immediately after this.....

and the short wait to see a doctor and being told they’re just not sure until the tests come back.

Then, five days later being told I had breast cancer when I had convinced myself it was nothing.

Then, the month long wait for the operation to have the dreaded cancer removed and the happiness this brought as it was now gone.

Thinking I am one of the lucky ones as my consultant thinks we found it early, but not being convinced of this when it was also found in one of my lymph nodes. Also, lucky as I get to keep my breasts and have had a lift and reduction on both sides. Before breast cancer I didn’t even know this was an option.

On my journey, I have found that breast cancer comes in so many different forms and that treatment differs wildly from patient to patient. So for me, the waiting game continues whilst I wait to see what form my cancer is (its grade and its stage) and what treatment lies in store for me, as well as the realisation that the treatment can be worse than the cancer and that this journey is never really truly over...

The Waiting Game ~ Toni

DAY 28a

Fatigue is my nemesis.
It’s still here now the cancer is gone.
It’s silent and invisible.
It reduces the useful hours in my day.
It reduces the useful days in my week.
I want to fill life to the brim,
To celebrate the time I have left.
But fatigue whispers, “rest”.
When I don’t listen,
Fatigue shouts!
Fatigue keeps score.
Fatigue makes me choose,
Between things I must and things I love.
I wish fatigue would F**k off!
Fatigue is my nemesis.

Post-Treatment fatigue ~ Katherine

DAY 28b

"We somehow manage to endure our own trials but we could barely imagine handling someone else’s. The stark truth is we have to."

​If we all put our stories on the table would we feel inclined to only take our own home with us again?

We somehow manage to endure our own trials but we could barely imagine handling someone else’s. The stark truth is we have to. We are faced with illness, an event, a diagnosis, a setback and that’s our story. We keep on plodding, crawling, struggling, crying, fearing. Or we pretend, putting on Oscar winning performances just to get through the day. We dress up, show up and manage to smile even when trepidation lurks in every waking moment. On those better days we function, work, and play in our new normal. We have joy and laughter and cherish the moments.

​A cancer diagnosis is a shocking event. The word "cancer" still manages to assault our senses and rock our world. My lovely, late sister Bridie once told me that when she attended hospital for appointments, she would keep her head down as she entered the main building to avoid reading the sign on the adjoining building ‘The Cancer Centre’, such was her dread of the word.

​My experience was a steep learning curve from blithe ignorance to the recognition and acceptance of the fact that these ‘abnormal cells’ were "Breast Cancer." Looking back I was culpable initially in my aversion to using the word cancer. Driving home from the callback appointment for mammogram, ultrasound and biopsy, I told my husband that we could be on a ‘rocky road’. While breaking the news to my sons, I used the ‘abnormal cells’ euphemism. My eldest boy was the first to confront this truth and asked straight out.

From there, it became a case of learning a new language, and becoming so fluent in the terminology of tumours, surgery options, drug regimes and side-effects, that the fear of the words diminished and we were able to speak unambiguously in this new language.

​When treatment ceased, fears remained. The vision of sitting in a small boat and being cast adrift was prominent in the early post treatment days. We are ‘living with cancer’. Even after years, thankfully without recurrence, still ‘living with cancer’.

​What is unmistakeable, though, is this: everybody has their story. For my sister, it was ovarian cancer and the loss of her wonderful husband to a brain tumour. For others it is not a cancer related story - depression, anxiety, bereavement, addiction, the loss of a child, tragic accidents, disability and a myriad of other trials are the reality of people we know.

What's Your Story? ~ Kate

DAY 29a

"People do not understand that how I look on the outside is no reflection of what is going on inside....."

If only my skin was transparent so they could see the mess inside.

The inflamed liver, which came from nowhere gives the most excruciating pain, and which is being overwhelmed by cancerous cells joining together.

The lung which doesn't have enough room because of the inflamed liver, adding to your problems leaving you breathless.

The bones from your toe to your back, making the smallest things difficult, feeling like your joints are grinding together.

The bone marrow struggling to cope with the drugs consumed daily for years, on occasion leaving you floored and just needing a break from it all.

The heart broken in two at the thought of not seeing your beautiful baby achieve everything you desire for her or even celebrating her next birthday.

Not growing old with your husband, enjoying old age and a semi-peaceful life.

Aspiring to have grand children, but realising you will never hold them.

Ageing from the inside.

On the outside I look so well because I am inflated by three stone from steroids and endless rounds of chemotherapy - which I am grateful for.

I have hair - which to most people means you are cured.

I am busy and live my life every day - what do they expect?...that I should stop enjoying things rather than relishing everything I love more than ever.

Sit in a chair all day wallowing that I have it and wishing my life on someone else?

People do not understand that how I look on the outside is no reflection of what is going on inside, and that this could change through no fault of mine tomorrow and my death could quickly follow.

But You Look So Well ~ Dawn

DAY 29b

My primary breast cancer was diagnosed in 2006 at the age of 31, a tiny grade 1, stage 1 tumour, and following treatment I was given a 95% chance of lifetime cure. Fast forward 9 years to 2015 and I was diagnosed with secondary breast cancer (also know as metastatic breast cancer or stage IV) where the breast cancer has spread to other parts of the body and which has an average survival of 3 years.

My first line hormone treatment following the secondaries diagnosis kept me stable for 2 years but in September 2017 I was admitted to hospital with deranged bloods, progressive disease in my liver and bone marrow and a distinct possibility that I was not going to make it home that week, let alone the end of the year. We took a risk with IV chemotherapy which potentially could have killed me at the time, but it was that or nothing! So over the year I've had buckets of chemo and blood transfusions, lost and regrown hair, eyebrows and eyelashes and every day I'm living with treatment side effects such as muscular and joint pain, liver pain, peripheral neuropathy, painful nails, fatigue,memory problems and more, but I have to thank the chemotherapy for rescuing my bone marrow and that I'm still standing.

I've lost count of the number of needles (150+), blood tests, scans, investigations, procedures and ops.

I've had good news when it's kept the disease stable. I've had bad news when treatments have stopped working. Anxiety levels are through the roof every 3 months waiting for scan results. Generally those of us who get stable results have around a 3 month window to breathe again before starting the process again.

The secondary breast cancer support groups I belong to have lost many women in the last year, many with young families. It is heartbreaking for the community and it once again brings the question of our own mortality to the forefront. 11,000+ people will have died in the UK alone over the past year from secondary breast cancer.

Imagine the heartbreak of knowing the chances are you won't see your children grow into adults, see what they look like, see what they do with their lives. I made them and I deserve to see this and they deserve to have me around to enjoy their exciting times or help them through their hard times. My future hangs in the balance and I am grieving for it.

We are denied certain treatments as the expense doesn't justify the extra time. This means we have to fight for it. Many secondary women have to make a stand and campaign for better drugs, treatments and care to be made available to us as with these we can live better. I've been to a conservative party conference and to parliament to raise awareness myself but ideally we shouldn't have to do this but we don't have a lot of choice...stage IV needs more!

The Reality of Secondary Breast Cancer ~ Vicky

DAY 30

While breast cancer did not take my entire brain away, it dismantled my brain’s capacity and ability to remember what I was about to say - oh where did that go? It also made me forget more stuff. It took away my ability to focus, concentrate and follow conversations. It gave me the utmost present of a fog, fuzziness, and confusion trying to make sense of things. And you know what, my brain is tired, it feels exhausted most of the time.

On the bright side, breast cancer gave me my brain’s ‘thingy-bob’: my word friend that comes to help when I forget names, can’t string a sentence together, and get muddled up, and realise that yes, I'm not making any sense. My brain’s ‘thingy-bob’ is, well, I can’t say great, but handy, and I can use it all the time, whenever and wherever I want to. I haven’t yet come to forget my thingy-bob which I think is great.

What’s not great is my self-esteem, my confidence, and while thingy-bob helps me get away with stuff it makes me look and feel stupid. I have to try harder to compensate for my cognitive impairments. And that can be exhausting. As one example, when I lecture I have to put twice the amount of effort into remembering the story-line – make sure I don’t get distracted and continue the flow. It’s not apparent from the outside, as I win outstanding lecturer and outstanding supervisor awards from students. On the outside, I look great, I’m doing great, but this comes at the cost of trying harder, probably not good for my brain to feel exhausted all the time.

The trauma of a life threatening diagnosis like breast cancer and the treatment that comes with it, are great barriers to our mental health, to say the least. We suffer cognitively and emotionally. Neuroimaging research has shown that this damage to structure and brain function can last for many years post active treatment, in some more than others. The research from my lab shows that by boosting our cognitive efficiency, we can reduce our emotional vulnerability and feel better about ourselves, more empowered, more confident and self-assured, and of course more resilient.

So, it’s the resilience we aim for. We are looking forward to a time when we can put the brain’s thingy-bob on hold and let our brain do its job. There is hope. Watch this space.

My Brain's 'Thingy-bob' ~ Naz

DAY 31

Cancer wasn’t a truth I ever wanted to know about. I never thought “it would be me” as I heard about friends and relatives being diagnosed with different types of cancer. I didn’t want to know because in my mind it was a “death sentence.” I’d seen my brother in law die from cancer; when I was diagnosed I assumed I was going to die, probably very soon. What I didn’t realise was that in fact it was a “life sentence." I live every day with my cancer diagnosis even though that original day was 14 years ago and although I received a second diagnosis 4 years later I’ve been “officially” cancer free for 10 years.

So it has become part of “me.”

That means: I never forget it for more than a few hours, but remembering it doesn’t make me unhappy, it’s who I am. It means that I’m always grateful to be here, for the GP, the surgeon, the oncologist, the nurses who have been there when I needed them, for my husband, my friends and relatives who supported me. But that doesn’t make me a better or a different person; I haven’t had an “epiphany”, and whilst I’ve done many wonderful things over the 14 years of my “life sentence” I haven’t deliberately set out to “enjoy every day” (and some days I haven’t enjoyed at all)! I’m often moody, and I get cross over things that I probably shouldn’t. But that’s fine; it’s part of life, it’s who I am.

So that’s my truth - living with cancer is what I do. Not inspirational, nothing special, but living, working, crying, moaning and laughing - and that’s absolutely fine - I’m living my life sentence and very pleased to be doing so!

Sentenced to life ~ Ruth

DAY 32

The Truth, the Raw Truth, and Nothing but the Truth

This October 2018, through BRiC, our #MyBreastCancerTruth project for Breast Cancer Awareness Month provided our community with an honest, timeless and most impressive account of our experiences as women with primary and secondary breast cancer, right through diagnosis to treatment and beyond - our highs and our lows. We have demonstrated in more than one post, to be exact 43 posts, the women whose lives lie behind the statistics and the diversity of the psychological and physical scars that we continue to live with. The impact of what we’ve produced will be countless, but with over 5515 likes and 1764 shares on Facebook, we can get a glimpse of how the public has been impacted by us. We have reached out to so many.

We have shown that breast cancer can paint us with mixed emotions, fuelling fear, uncertainty and cognitive effort, so we can survive to the best of our ability, even though we are broken inside. We have demonstrated that by embracing the many pains and sorrows we continue to experience, we can take a step closer to building blocks of resilience and flexibility.

Our truths have led by example: that while we cannot change what has happened to us we can squeeze the good from the bad, and we can exploit our vulnerabilities to our advantage. With simply stating those simple truths that often go unnoticed, we have not only educated our friends and community members about the many facets of breast cancer, we have heard resoundingly from the many comments just how much our truths resonate so much with other women living with breast cancer.

We have made a strong statement: while breast cancer can give us a timeline, our spirits shall remain timeless.

I want to thank our amazing members who contributed, sometimes with more than one truth: Marion, Vicky, Fiona, Bal, Shampa, Katie, Sue, Penny, Anita, Jennie, Andria, Sheila, Cheryl, Caroline, Jan, Rachael, Elizabeth, Vikki, Suzanne, Janice, Dawn, Josephine, Suzanne, Janette, Carol, Toni, Tracey, Rhian, Becky, Katherine, Kate, as well as two of our members who wished to share their #MyBreastCancerTruth anonymously. You provided the main ingredients of this timely project, the impact of which shall be lasting.

My deep heart-felt thanks to Tamsin and Vicky. There are simply no words to adequately capture the amount of dedication and work that went in executing this project. Managing and delivering such a project took, from the little that I know, numerous, absolutely many hours of hard work, and lots of amazing ideas that they both invested in....

With tears of mixed emotions... and yes, this has made me cry, a big hug to all of us....

Naz xx

Breast Cancer Awareness Month October 2018 ~ #MyBreastCancerTruth

#MyBreastCancerTruth

October can be a difficult month for those of us undergoing treatment for primary and secondary breast cancer, as well as those living with its effects. For all that we appreciate the pink-ribbon symbol and the efforts of charities to raise vital funds for research and support on our behalf, the prominence given to breast cancer - and arguably on preventing breast cancer - can be very painful for those of us who have already developed the disease.

This year, for our Breast Cancer Awareness Month project, we asked our members to tell us what matters most to them in terms of information about primary and secondary breast cancer.

The results are eye-opening.

Over the course of October we are sharing the stories of real women living with primary and secondary breast cancer. Our project #MyBreastCancerTruth highlights that breast cancer is more than a single story.

We are the women behind the statistics. We are the women whose lives are rich and meaningful, whose contributions to their families and communities are significant, despite our disease. We are the real women behind the statistics, we are not 'patients,' we are mothers, daughters, sisters, partners and friends. We are all women everywhere.

Weekly discussion summary ~ Impact on our teenage children

“Telling our teenagers about our diagnosis with breast cancer was one of the hardest things we’ve had to do.”

This week we discussed the impact of our breast cancer on our teenage children's emotional wellbeing, their reactions and ways of coping. 

Naz told us that research shows that teenagers whose mothers are diagnosed with breast cancer often react with confusion and mixed feelings. They often feel torn between wanting to help and wanting their own lives. They may worry that they are more likely to get cancer now? They are afraid that they will lose their mother and then what will happen? A main finding, Naz shared, was a tendency to internalise feelings which can mean higher rates of depression and anxiety in teens with parents who have cancer compared to those with parents with ‘no cancer.’ 

Feelings of helplessness can lead to avoidance in our teens, both of us and of the feelings. This was something that many of us could relate to, with teens (and younger adult children) showing little outward reaction. A teenager is old enough to understand on some level but may not be confident enough to ask questions and articulate their fears. 

Our discussion, which included women with primary and secondary breast cancer diagnoses, highlighted our huge worry and guilt about the impact of on our teenage children. It’s easy to blame ourselves and our illness for wayward teenage behaviour, and many of us felt we had let our children down. 

We shared that telling our teenagers about our diagnosis was one of the hardest things we’ve had to do. 

Some of our teenagers were attentive and helpful, others withdrew and refused to engage with us during treatment. Some struggled more than usual with exams, others sailed through. Many of us felt that being open and involving our teens in the treatment plan is the best approach, and for some this had led to a strong mutual support whereas for others, the picture was more complex. Reactions varied considerably but included anger, tears and silence. Many asked us outright if we were going to die. 

Chemotherapy was often a particularly difficult time for our teens. Some were actively involved in supporting fathers and siblings, while mum was ill, others shut down and refused to engage, with a few choosing not to visit us in hospital. Seeing us lose our hair was often particularly difficult - this is such a stark physical reminder of the presence of cancer and can be particularly tough for those teens for whom appearance is a strong preoccupation. One or two families had used humour and coped by laughing about it, but these were few.

A few teenagers were outwardly cruel to us and appeared to blame us for turning their worlds upside down, sometimes in hurtful outbursts, others withdraw and don’t engage at all, not even to ask us how we are doing. Several of us described how our teenager had become so anxious that they had become suicidal. Some of us with younger children at the time of our diagnosis were now seeing the impact on our teenage children – years later. Those of us with inherited mutations like a BRCA mutation described a double whammy effect on our children.

Our discussion highlighted that ‘real life’ does not stop because of cancer and that other loss and adversity, such as a family bereavement, may hit our children – even those who appeared to cope reasonably well with our cancer – particularly hard. Likewise, some teens appeared to cope reasonably well, but went on to develop adverse behaviours later in adulthood. We wondered what role the role the trauma of our diagnosis had played in their difficulties?

Support for our teenagers from schools and mental health services is patchy, some of us reported excellence and others zero help or even damaging interventions. Having someone to talk to outside the family, a counsellor or teacher appeared hugely benefit. We asked why so little support is offered to our teenage children when we are diagnosed? It’s hard to go out and proactively seek it on their behalf when we our own reserves are so low.

For those of us with secondary breast cancer, and some of us with complex treatment histories, our children face the challenge of growing into adolescence and adulthood alongside a mother whose treatment is ongoing.

We are united in our anguish and concern about what having breast cancer means for our teenagers. We want to help them but we often don’t know how. Naz told us that we can do is to love them unconditionally and support them through their ups and downs. Their reactions and responses may hurt us terribly at the time but in the long run, it can be helpful. We can try to remember that what we are seeing is not final, but a stage. 

For all the experiences of adversity and pain, there were examples of resilience, of our teenagers coming through the hardest of times and going on to do well at school, university, and in their work. Our instinct is to protect our children but if we can involve them in our experience with honesty and love, then troubled teens can grow into strong adults, having learned about suffering and sadness. The teenage brain, Naz told us, is at its height of plasticity and therefore has huge capacity to build resilience from trauma.

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please send us a private message via Facebook.