Day 17 #pathways2resilience ~ Uzma

Special Feature Edition: Pathways to Resilience: Embracing our Vulnerability, Celebrating our Resilience

Don’t Ask Me To ‘Get Over’ My History With Breast Cancer

In today's post for our month long feature #pathways2resilience, we are delighted and honoured to share Uzma Yunus' blog post about the challenges of living with cancer and its effects. Uzma is a mother, physician and psychiatrist whose writing resonates across the world:

"Many survivors end up having clinical depression, anxiety and even post-traumatic stress disorder. The battle with cancer continues for a survivor despite cancer being gone from their bodies. The fear of cancer lingers over most survivors and then about thirty percent like me have to deal with recurrence and start of the treatments all over again. For us with metastatic breast cancer, it is never over at all. Our fears just get bigger and scarier."

Link to blog:

http://www.huffingtonpost.com/entry/breast-cancer-dont-ask-us-to-get-over-it_us_57f18712e4b07f20daa10e51

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 16 #pathways2resilience ~ Jan

From Fear to Resilience - Living with Breast Cancer and its Effects ~ Jan

Learning to live with Metastatic Breast Cancer...

That elated feeling filled with excitement, when you can’t wait to re-build your ‘life’ after breast cancer treatment. It doesn’t last long for some, like Jan, whose cancer metastasised in a course of a year after she finished chemotherapy. Misdiagnosed for a cyst, she insisted on further scans to sadly reveal that her primary breast cancer was now in her spine, liver, lungs and brain. Her lovely family blessing her with support, but the loneliness singing loud. A death sentence now has left her with two choices: to give up or to continue being bold, beautiful, and live life to the full, and fund raise for her beautiful family so that they would not die of cancer.

Jan has chosen to be resilient and versatile, in the dark cloud of adversity that can cover her thoughts, her heart and her vision. We are delighted that Jan has submitted a new blog, 'Learning to live with Metastatic Breast Cancer' for our month long feature #pathways2resilience

According to what she describes, acceptance in the face of uncertainty helps her be resilient, flexible, and diverse.
So proud to share Jan’s story with you. She is an icon of resilience and the soul and heart of our group.

Well where do I start? I suppose at the beginning…….

From the age of 45 I was backwards and forwards to doctors with lumps in my breasts, every time I went, I was referred to breast clinic who did all necessary tests - fybrostic breast, small cysts. They would drain cysts and send me home.

I had this one lump in my left breast that never really went. I used to lie awake worrying about it. I had only had it checked out in November 2014 and was told it was a cyst. Come February 2015, it was still there so I decided I wanted the lump cut out so went back to the breast clinic again.

I had arranged to meet my sister after clinic to go for lunch and make a day out with our husbands...little did I know what devastating news I would get that would change my life forever.

I remember the doctor doing the scan and telling me “Mrs Syers this is not a cyst”. "Of course it is. I only had it checked November." " I'm really sorry," she said. OMG. I thought I was dreaming, stuck in a nightmare and I would wake up... I felt like I was looking over me and it was someone else ... "Are you saying it’s cancer?" I said.  "Well, we will know more after mammogram but yes it's a big possibility.” Omg, OMG, omg. In the next 10 minutes everything was a blur. I planned my funeral, what people would say about me. I was physically shaking. My husband and sister were crying. I told them I'll be okay. From then on it was different tests, from one room to another, to one doctor to another. After all tests, I was given appointment for the week after. That was the hardest and longest week ever. I never slept or ate. Dr Google was huge part of my life, made me feel worse ...

Results day ........."Well Mrs Syers you have what we call triple negative breast cancer. You won't be needing any of them expensive nasty drugs when treatment is finished." Wow! I looked at my husband and we both hugged. “That's really good news ...” How wrong can one be? Dr Google told me all about TNBC.

Only 5/10% of Breast cancer is TNBC. It is the most aggressive breast cancer. The survival rate is rubbish, chances of it returning in the first 5 years is very high.

So my journey begins - surgery lumpectomy and sentinel lymph node which means only lymph node near cancer is taken. Week later went for results - really good news clear margins and no sign of cancer in lymph nodes. Yayyyyyy! Some good news! 

My chemo started EC /paclitaxel.

Wow what a journey that was - from being a lively, high living woman to becoming a bald ‘sick’ all-the-time-no-eye-lashes-freak. Well that's how I felt. I spent so much time crying and thinking the worst. Dr Google became a huge part of my life. I joined all the forums not realising that this was making my anxiety 100 times worse.

I remember my back hurting in the middle of the night like my skin was just so sore to touch. I got up and looked in the mirror and saw a mole. I thought, OMG I've got skin cancer. So at 3am in the morning, I'm taking pictures of my mole (very difficult as was on my back) then on to Dr Google looking at pics to see if my mole was cancerous. Well in my head, you have guessed it - I had skin cancer. I spent the night on the couch, crying, my stomach in knots feeling sick and lonely. How mad is that no one really understands unless you have cancer ... Loneliness is a huge part of having cancer. A few days later the pain went and I got over the mole being cancerous. This happened lots through my chemo. My mind was always working overtime. I can't begin to tell you how many places the cancer had spread to, such a depressing time. My poor family. I had them all drove mad. I really don't know how they coped with me. But they did and I'm blessed to have such a fab support network – a wonderful husband who never moans, children who love me and friends in abundance. Without them all I wouldn't be here today.

Being self-employed, I had to work through chemo which I think helped me took my mind of my ailments.

Yayyyyyy chemo finishes. I get to ring the bell - what a fab feeling that was. It’s all over. Only radiotherapy now - 28 sessions. This will be a walk in the park to chemo. Well I got that wrong. I really struggled, everyday lying on that bed exposed from the waist upwards. Different nurse every day, young students, male too, just walking in like I was just a piece of meat. Lying on a slab, my arm aching as I had to hold it above my head, my skin burnt terrible big brown patches. The tiredness was unreal. The loneliness again. I felt so alone.

This one day I was in radiotherapy, just leaving, and I bumped into a customer of mine who had TNBC. Her treatment had finished 8 months ago. I thought ‘what's she doing here?’ We sat and had a coffee and I couldn't believe what she told me. The cancer was back - it was in her lungs and chest wall. I was devastated for her, life was so unfair, 8 months that's no time. It brought it all home that this could be me soon. I cried all the way home. I decided no matter what, that I was going to be there for her, friends told me to step back, that she would bring me down. I thought OMG, No! That could be me one day, and the thought of being deserted because I had metastatic breast cancer. This is when you need support more than ever. So I was going to be there for her no matter how hard it got.

Well, all treatment was over. I should have been happy but I wasn't and I couldn't understand why. I actually felt worse and hit rock bottom. I felt deserted - all the care I had had was gone and I was on my own. I thought I can't carry on like this. I need to get some help.  There is help there, you just have to ask. I threw myself back into work and tried to get my old life back. Very hard, as you still are suffering side effects from the vile chemo which can go on for years.

Well, here I am cancer free. Great! At Christmas hair had started growing back. Booked Tenerife for January. 18 of us, all family went. My dad subsidised it for us all as we had had such a tough year. My dad is also terminal with prostate cancer. So the holiday was to make memories and it sure did. We had the best time ever.

I started getting pains in my back when I returned from holiday but I just put it down to chemo and the after affects from it all.

The pain just got worse, so I pushed for a scan, but the surgeon opted for bone scan which came back clear. Tried to send me home and get on with my life but when you have pain that’s all you can think about. So once again, I pushed and pushed for scan. I felt like a hypochondriac, middering for scans but I'm so glad I did. The results were not what I wanted to hear - 2 tumours on my spine. From then on it was test after test My results came back, not good news. Mets - liver, bone, lungs and brain.

I was devastated. I had just been given a death sentence, omg I was really going to die of cancer ....

I was to have chemo again but I'd do anything to stay alive longer. Family were devastated lots of crying ...

As time went on chemo started, and so did sickness to the point that I was given a driver with sickness meds and pain killers. This helped loads. I felt rotten. I am struggling this time with chemo my bloods are never right. I've had a blood transfusion which I felt great after as I was so tired sleeping all day.

This time round having metastatic breast cancer I find I'm coping better than when I was first diagnosed ... I don't know whether it's acceptance I've got it and there's nothing I can do but live with it. I can't change it. Wish I could it is what it is and it's now part of me till I die, sad to say. I'm doing my best. I have terrible days where the big black cloud comes and I can spend the whole day crying. I try not to think about dying and concentrate on living. Which is hard sometimes when my body is tired and achy all the time. My face is puffy - I call it steroid face, the way I look affects me as I always take pride in my appearance, it's just harder now to get make up right. I just spend longer on it - lol. I also sleep so much, one minute I'm full of life the next doesn't matter where I am. I need to sleep. And sleep I do, sometimes all day.

I am trying to do nice things and make memories with my family. I try to talk with them about me dying but they don't want to know, so it falls on deaf ears. I suppose it's understandable - who wants to talk about their mum dying? I'm writing letters to them all, hopefully keep them out of trouble - I'll be watching them. Now I'm upset I don't want ever to leave them.

Well it takes us today were am I now. I'm happy, believe it or not cancer is not going to destroy me. It’s taken my health, my independence [driving] I can no longer drive and my car is a massive part of my life. But we have lots of drivers so they all do their bit, mostly husband he's amazing. I'm so lucky there.

Life is for living and I intend to live it to the full when I can, enjoy my family and friends who are a very important part of my life.

I will keep on with my fundraising and hopefully leave my legacy that my children and grandchildren won't die of cancer.

I am strong, brave, beautiful. Just like all my fellow pink ladies. I have to believe this to go on xxxxx

#pathways2resilience #bcresiliencecentre
#panningforgold #breastcancerawareness

Day 15 #pathways2resilience ~ Amanda

Special Feature Edition: Pathways to Resilience: Embracing our Vulnerability, Celebrating our Resilience

'My dining room became my art room. And I had started to fill the gaping hole that cancer had ripped into my life.'

We were thrilled to share Mad Little Artist's work earlier this year. She's an amazingly talented artist and we were honoured that she agreed to appear as our very first art feature in Panning for Gold.

In her blog post, Amanda shares how she taught herself to create art following a diagnosis of secondary breast cancer.

Do take a moment to enjoy Amanda's new artwork below and read Amanda's story here: http://bcresiliencecentre.blogspot.co.uk/2016/03/i-am-now-an-artist-with-cancer-amanda-hayler.html

Find more of Amanda's work at:
FaceBook https://www.facebook.com/madlittleartist/

Instagram https://www.instagram.com/mad_little_artist/

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 14 #pathways2resilience ~ Janet

Day 14 #pathways2resilience ~ Janet

Special Feature Edition: Pathways to Resilience: Embracing our Vulnerability, Celebrating our Resilience

Not one, not two, and not three, but four; Multiple recurrence and breast cancer metastasis: And Cancer, Yes, I’m still standing.

Around 30% of women with a primary diagnosis of breast cancer go on to develop metastatic breast cancer. You would think that the treatment first round would have killed the nasty cancer cells, once and for all. But no, they can hide, and raise their ugly heads, not once, but multiple times, after every treatment, and won’t give up, until they cripple you. Metastatic breast cancer is incurable, and not talked about, yet its reality is very much alive. Thousands of women, like Janet, continue to live prosperous lives, and as such should not be written off, despite the ignorance they receive.

Read Janet’s most moving story. Your heart will go out to her, not JUST because of what she has endured over and over again, but how she has risen from it, not once, but multiple times.

Hi, I'm Janet, a 65 year old wife, mum of four and grandmother of eight, one of whom is a heaven grandchild. One of my daughters was born with a rare congenital heart defect therefore I was also her carer for 42 years until we lost her last year.

My breast cancer "journey" began in 2010 when following a routine mammogram I was diagnosed with DCIS middle grade, left breast, no lymph node involvement. I had two lumpectomies as the first didn't have clearance, and 15 rounds of radiotherapy. Then:

2012: recurrence...invasive ductal carcinoma, grade II
2013: small stroke
2014: recurrence…invasive ductal carcinoma, grade III
2015: stage IV/secondary/metastatic breast cancer in bones 2015: death of my daughter
2016: further spread to left lung and left axilla lymph nodes, HER2 neg, ER+ PR-

Whilst feeling very low one day and feeling very sorry for myself I decided to write to the beast!!! Here's my letter I would like to share with you.

Dear Cancer,

You invaded my body for the first time in 2010 and tricked me into believing that it would just be my one and only brush with breast cancer as it was DCIS grade II, no lymph node involvement, so no chemotherapy, just radiotherapy and 2 lumpectomies. I recovered well, returned to work, and continued with my life, never believing for one moment you would ever return.

It's 2012 and the night before my yearly scheduled mammogram, so I thought I'd have a quick check and to my horror I had a lump, I felt my face burn, my heart went into my mouth, I couldn't swallow, I felt sheer terror, it was on the scar line. Next morning I had my mammogram and told them about the lump, so I had to go directly for a biopsy and ultrasound, but I knew you were back, you had crept up on me without any warning. You put me through hell, this time it was grade II invasive ductal carcinoma and this time you robbed me of my womanhood, my self-esteem, my image and self-confidence. I lost my left breast and couldn't even have a reconstruction due to complications. You introduced me to paralysing fear, panic attacks, and turned me into a crumbling negative shadow of myself, suffering side effects of the wretched hormone medication. I had to leave my job and my whole world collapsed around me. I still had to nurse and care for my sick daughter and I think that was what gave me the strength and determination to pick myself up and carry on and fight you, you weren't going to have me!!!

In 2013 I had a small stroke, thankfully I recovered fully, and guess I can't blame you for that but I would if I could.

Well peace reigned for a while and I had amazing counselling that helped me beat you again. It's June 2014, still suffering from image problems and my darling husband used to check my breastless chest area, as I still couldn't bear to look at myself, or touch my flat ugly chest. I saw his face go pale and his eyes fill with tears, he said "oh no, not again, this is so wrong, so unfair, there's a lump”. You evil beast, you just couldn't leave me alone could you? Back to hospital for a barrage of tests, this time further recurrence grade III. Well I was so angry, I didn't even cry and I stayed awake through the surgery and watched them cut you out to see you gone. There were clear margins and I was to continue on hormone medication and carry on. You were NOT going to get me.

It's 2015 now and my daughter is now so sick and she was sadly taken from me peacefully in April at the age of 42, in my arms, at home as she wished surrounded by her family. Then I shouted out loud at you, "OK are you finished with me now? How much more can a person cope with? Now go away and leave me alone".

I tried to pick up the pieces but it was too hard and sunk into deep depression. During this time I felt very unwell and had terrible back pain, which doctors attributed to stress and grief. In October I visited my hospital for another reason and spoke with my Macmillan nurse and asked if I could have a scan to put my mind at rest. The nuclear scan was done and it was first thought to be degeneration…getting old, I laughed.

I then got the call “I'm so sorry you have secondary metastatic breast cancer in your bones”. You broke our hearts cancer. I've never seen my poor husband cry so much, “It's not fair, why you again?” he said. We are numb, incurable, incurable, incurable, that was all we could hear. I would be planning my funeral, doing my Will, sorting out all my affairs. You did this to me cancer, you had won!!! Well NO, to hell with you, I've got cancer, but you haven't got me…not yet. I'm on Denosumab (bone strengthening) injections, exemestane hormone therapy, adcal supplements and pain medication and so far bone mets are stable mable. You also took me away from my primary friends, nurses and support network in a bright sunny waiting area upstairs, instead to be moved down to lower ground floor away from the potential survivors, pink ribbons, lots of information and masses of support.

Nowhere in the sunny department is there any information or literature about secondaries or recurrences, it's as if we have moved over to the dark side, hidden away, we are the failures, we didn't get remission or a cure, we are incurable, we might frighten the other ladies as they don't want to think about the reality that this could happen to them. But it can and does to anyone, cancer you just don't care, you have no conscience and take no prisoners, rich, poor, famous, anyone. BUT cancer we will make people aware of you, we will be counted by the hospitals and authorities, we may not win the war but we will win as many battles as we can. We will fight back. I know I will lose to you one day but not without a fight.

I have an amazing team looking after me now which includes my Secondary Breast Cancer Nurse Specialist, Tracy Acock. Not only does Tracy greatly help me with my care, she also fights for awareness for all those living with secondary breast cancer. I just wish we were in the sunshine as well as it can be an achingly lonely place to be. You have been with me for 6 years and 7 months so far and as wonderful as people are to us they can tire of you, evil cancer. You wear people out and we have to put our lippy on and smile and say "I'm fine"…if only.

Well 2016 here we go again, it's in my left lung and axilla lymph node, albeit small. I refused to cry when they told me, I refuse to give in to you, yes I have days I cry, cry a lot, days I feel low, days of terrible pain, mood swings, but as far as I'm concerned you can keep snapping at my heels but I'll just run faster, not that I can run anymore…OK walk faster.

Cancer I hate you, I detest you, you are a silent monster who has invaded my body, my life and my world. I don't take you for granted, you are always there sitting on my shoulder but you ain't got me yet!!!!

Janet

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 13 #pathways2resilience ~ Secondary/Metastatic Awareness

Special Feature Edition: Pathways to Resilience: Embracing our Vulnerability, Celebrating our Resilience

Are You Ready to Start Talking About Secondary Breast Cancer?

Today, October 13th, is Secondary Breast Cancer Awareness Day, one solitary day out of a month-long Pinktober - it’s the not-so-pink lining which we women with primary breast cancer can hardly bear to face.

Here in the UK around 12,000 women die as a result of secondary breast cancer every year. These women are mothers, sisters, daughters, friends and partners.

Around 30% of women with primary breast cancer go on to develop secondary breast cancer - breast cancer which has spread to other parts of the body through the lymphatic or blood system. You might hear it described as ‘advanced breast cancer’, ‘metastatic’, or stage 4 breast cancer. You might also hear about so-and-so who had breast cancer and then developed liver cancer. This is inaccurate - breast cancer that has spread to the liver is not the same as liver cancer.

At the Research Centre for Building Psychological Resilience, we hear from our friends living with secondary breast cancer about how isolating and marginalised they feel in the breast cancer community and over the next few days, we'll be sharing some of their experiences highlighting the way in which they continue living rich and meaningful lives.

We desperately need to know why it is that some women find out that their cancer has returned, despite extensive treatment, despite having been told they were ‘all clear. If we can be brave, and stop hiding from our fears, we can start talking. If we can start talking, not only can we support one another, we can advocate, and we can press for better and more effective treatments.

We will not be featuring any one person today for our #pathways2resilience project, instead we wish to share a blog by our deputies, Tamsin and Vicky, published earlier this year on HuffPost UK. We dedicate this post to those who have died from secondary breast cancer and the thousands who continue to live with the worry and uncertainty of their condition every single day. #DontIgnoreStageIV

Please read the blog ‘We Need to Talk about Secondary Breast Cancer’ here: http://m.huffpost.com/uk/entry/10247000?utm_hp_ref=uk-women

You can also find further information and support below.

Secondary Breast Cancer Charities:  
http://www.secondhope.co.uk/

http://www.secondary1st.org.uk/

Breast Cancer Care:

#NotSecondRate campaign

https://www.breastcancercare.org.uk/secondary

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

#SBCAD #DontIgnoreStageIV

One Year On ~ Vicky

Earlier I came across this quote, “We all have an unsuspected reserve of strength inside that emerges when life puts us to the test.”, which today is very apt for me.

It’s hard to believe that it’s days away from the 10th anniversary of my primary breast cancer diagnosis at the age of 31.  A small, low grade cancer with no lymph node or blood vessel involvement and with an excellent prognosis.  My Oncologist suggested dealing with it by surgery alone and agreed for me to go ahead and have the family we had been planning (I’d experienced a miscarriage only 4 months before). He told me in the nicest possible way to go away and to never darken the doorstep of Oncology again! So off I went, welcomed my two children, gave a nod of acknowledgement to the 5 year cancer-free milestone as it passed by, got married, next stop 10 years which seemed to be in my grasp until a new bomb dropped.

One year ago today I climbed aboard a roller coaster and was told that I wasn’t allowed to get off.  I can still see that day clearly, extensive spread of breast cancer into the lymph node and bones, treatable but incurable. My world crumbled around me. I struggled to hear what the doctor was saying, all I heard was screaming in my head.  My first words after what seemed a lifetime: "My children are only 6 and 5, I need to be here for them”.

So here we are 366 days on, a year of ups and downs, but life does move forward. There are times when I forget for a few hours, feel normal even, then other times when I cannot shake off the waves of grief and anxiety surrounding what is facing us. It’s a bittersweet moment, because of course being here is cause for celebration, but there’s sadness too as it’s an anniversary which brings our sense of time into sharp focus. Our mind starts to be drawn to the future as well as the past.  

Over the year I ventured back to support groups, made new friends and met some amazing women sadly in the same boat. After joining the psycho-educational group belonging to The Research Centre for Building Psychological Resilience in Breast Cancer, which brings both primary and secondary women together, I was recruited by Professor Naz Derakshan to assist running the Centre along with Tamsin Sargeant. The work we have done together has seen us create this blog ‘Panning for Gold’, as a platform for women with a breast cancer diagnosis to share their stories and showcase their talents.  My first venture into blogging was here, titled ‘Stage IV and beyond…, and since then I have co-written two blogs with Tamsin for the HuffPost UK.

Secondary breast cancer can be an isolating condition as it is so widely misunderstood. It cannot be cured, so the treatment for it never ends and both this and the cancer cause physical side effects. The psychological impact of living with the condition can be crushing.  Thankfully, the online groups are supportive, caring places, somewhere to go where other women understand, where we can share good and bad news and also where there is a mine of information. Sadly over this year I have seen too many women die from this relentless disease, all at different stages of life, many young women with children and those who were denied that chance.  This has to stop, but we don’t have the answers.

                                                                         

So looking back what advice would I give myself upon diagnosis.  Initially I would say it will seem like a living nightmare but gradually you will find a new normal, so it is important to carry on with those tasks which allow you to connect with normal life.  Give yourself time to adjust as your head will be full of questions (a lot of which can’t be answered) and you will feel every single emotion…probably all at the same time and sometimes at inconvenient times. Acknowledge these different emotions and face your fears, otherwise they will rear up and strike when you’re least expecting it. But most importantly, keep the HOPE.





Blogs:

Stage IV and beyond... 
http://bcresiliencecentre.blogspot.co.uk/2016/02/stage-iv-and-beyond-vicky.html

Panning for Gold: Stories of Resilience after Breast Cancer  
http://www.huffingtonpost.co.uk/tamsin-sargeant/stories-of-resilience-after-breast-cancer_b_9997488.html

We Need to Talk about Secondary Breast Cancer
http://www.huffingtonpost.co.uk/tamsin-sargeant/secondary-breast-cancer_b_10247000.html

We Need to Talk about Secondary Breast Cancer ~ HuffPost Blog

What do Jo Malone, Cath Kidston, Maggie Smith, Olivia Newton-John, Jenni Murray and Kylie Minogue have in common? 

They have all been diagnosed with primary breast cancer.

We talk about ‘breast cancer’ as if it is one disease. It isn’t. There are several types of breast cancer which grow in different parts of the breast and at different rates. Some of us will be given chemotherapy, some of us won’t. Some women have mastectomies, others have lumpectomies. Many - but not all us - have radiotherapy. I felt a fraud when I didn’t have a mastectomy for a rare, aggressive breast cancer - but at least I got to keep my breast (someone really did say that by the way).

Whatever our treatment, what really matters to the 57,000 or so people diagnosed with breast cancer in the UK is that we don’t have, or develop, secondary breast cancer. Unlike primary breast cancer, which hasn’t spread beyond the breast or glands under the arm, secondary breast cancer refers to breast cancer which has spread to other parts of the body through the lymphatic or blood system. You might hear it described as ‘advanced breast cancer’, ‘metastatic’, or stage 4 breast cancer. You might also hear about so-and-so who had breast cancer and then developed liver cancer. This is inaccurate - breast cancer that has spread to the liver is not the same as liver cancer.

Do you want the good news, or the bad news?

The good news is that secondary breast cancer can be treated. The bad news is that it can’t be cured. Treatment aims to slow down the spread of disease, to relieve symptoms and give the best possible quality of life, for as long as possible.

Once the initial shock of a cancer diagnosis has receded, for most of us, the gruelling treatments, disfiguring surgery and psychological effects seem like a small price to pay for our lives. The end of ‘active’ treatment (chemotherapy and/or surgery and/or radiation) feels a bit like graduation - we get our big send-off and party. Everyone loves us because we took on cancer, because by being brave and positive we ‘beat’ cancer.

Of course we want to finish our treatment with optimism and celebrate being cancer free. If we are lucky, we pass the first year with a clear scan, then after the second we begin hoping we’ll reach the five and ten year milestones. How much attention do we give to secondary breast cancer? It’s easier to return to denial - this is our way of ‘moving on’. We wear our positivity as though it is a talisman which wards off cancer, as if it’s a well-established fact that by thinking about cancer we might activate some tiny cell into action, putting our lives in peril. We try not to think about cancer, we try to forget.  

Then we get a niggle, a pain, a scan. That old friend, Fear, knocks on the door again. Are we quite as safe as we think we are?

As a woman diagnosed with breast cancer twice, I get a knot in my stomach just typing the words, ‘secondary breast cancer.’ I admit that I’m haunted by the possibility of cancer returning. It’s the sun and moon of all my fears - as inescapable as the day and night, yet unspoken.

Around 30% of women go on to develop secondary breast cancer - these women are mothers, sisters, daughters, friends and partners. It’s the not-so-pink lining which we women with primary breast cancer can hardly bear to face. But what happens when our friends are diagnosed with secondary breast cancer?

I was diagnosed with secondary breast cancer in 2015, 9 years after having been given the 'all clear.' I see women extremely saddened when the friends they have made throughout their initial treatments or through support groups are diagnosed with secondary breast cancer. Though they continue to offer support, for many, this understandably means their own anxieties surface and they begin questioning their own mortality again. Having been there myself, I know this can be hard, especially when you are gaining a sense of moving on. But, this reaction can make it difficult for those of us with secondaries to feel that we belong in the general breast cancer community where the focal discussion inclines towards treatment for primary cancer and its aftermath. The sense of maintaining a positive attitude to ‘beat’ it, can be a challenging theme for those who haven’t been so ‘fortunate’ to keep it at bay. This fear which secondaries sparks in others means we find solace in groups specifically for secondary breast cancer but this then means the whole community doesn’t really talk about it.

~ Vicky

Somewhere along the way, I’ve realised I need to face my survivor’s guilt, sadness and the fear that I too might develop secondary breast cancer. People think that positive-thinking 'beats' cancer. It doesn’t. A cure will only be found by better understanding what makes our cells grow uncontrollably and invade distant organs. We desperately need science to find out why it is that some women find out that their cancer has returned, despite extensive treatment, despite having been told they were ‘all clear.’ We can only do this if we stop hiding and start talking about secondary breast cancer. The more we talk, the more likely it is that we can support one another and the more likely it is that we can press for better and more effective treatments.   "How does breast cancer do that? How do cells escape from an original tumor and nest somewhere in the body, eluding all treatments thrown at the disease and mysteriously "wake up" and start moving around the body again fifteen years later? What gives them the ability to hide? What triggers their activation again? What makes them so resistant to treatments? Why can't they be stopped? How do we know who has had breakaway cells versus those who haven't? We don't know. Nor do we even know the exact number of people with early stage breast cancer who go on to develop secondary breast cancer".

I dedicate this blog to Vicky, Amanda, Shelly, Rachel, Uzma and anyone living with a recurrence or secondary breast cancer. Even though you won’t recognise their names, these women are no less worthy of our attention and celebration.

Tamsin Sargeant, with vital input from Vicky Wilkes

This blog was published on HuffPost UK 'The Blog' 3rd June 2016

Link: http://www.huffingtonpost.co.uk/tamsin-sargeant/secondary-breast-cancer_b_10247000.html?utm_hp_ref=uk-women 

Running Against Metastatic Breast Cancer ~ Naz - HuffPost Blog

“Finally, the tears found their way to the surface, slowly but surely, I was crying. The warm thunderstorm had quietened but I didn't mind the rain. In a strange way, it was comforting.”

  

Naz’s latest blog for HuffPost…Running Against Metastatic Breast Cancer, speaks of her distress when she found out one of her friends had been given a stage 4 breast cancer diagnosis.

Please do read Naz’s emotional account here at HuffPost….

http://www.huffingtonpost.co.uk/nazanin-derakhshan/running-against-metastatic-breast-cancer_b_9864816.html

Could this be (one of) the greatest days of my life xx ~ Rachel

Those of you who have known me a lifetime will know I used to be a part time model. Mainly a sports model. At the age of 18 I finished my A levels and then had to choose between taking the modelling seriously or heading off to University. I decided my looks and body wouldn’t last for ever (and how right I was!!) but my brain Hopefully would, so off I trotted to Sussex Uni to study for a Mechanical Engineering degree. I’d done catalogues, newspaper adverts and brochures, it was a fun time. Parked as a good memory.

So over the years my dream of walking a catwalk had been left behind. University and a love of food, a very happy marriage, and 2 pregnancies leading to births of 2 very large babies certainly took its toll on my physique.

Then came the Breast Cancer diagnosis. So with this comes surgeries (3), missing parts (many), chemotherapy treatments (17th yesterday), a ton of different drugs (too many to name or count), steroids (appetite stimulants), radiotherapy (exhausting) and comfort eating (inevitable). A lack of ability to exercise fully – no excuses here – it really does have to be fitted in around health issues and energy levels. I’m not in the greatest shape ever!!!

Last week I got the chance to turn back the clock and feel like the old me. The model me. I cannot thank Breast Cancer care enough for giving me this opportunity. To live this lifelong dream, to tick this unticked box. When I was first selected I was “all clear” – except I wasn’t. I called BCC to check I was still eligible, as I still had cancer and a lot of treatment to go. Of course I was, if I was to be well enough at the time of the show. Well the whole sorry story has dragged on so long that there has been doubt in my mind that I would be well enough. The recent lung clots, the vision issues, the ongoing chemo. Only a few weeks ago I begun to feel scared I wouldn’t be able to take part.

I woke up last Sunday with a swollen face and neck, looked like an angry frog. I called the emergency line and off down to the hospital I had to go, dragging the family with me. Whilst they played in a local park I got checked out. Terrified I would be kept in and miss the show. To cut a long story short I refused to even sit on the ward bed and escaped an hour later. Thank goodness.

Well to the day of the show. About as emotional as it can get. As I waited backstage I felt my knees knocking and I thought – can I actually do this? Then they called out my name and I heard the Cheer of my life. 2 tables full of loud loving ladies were already whooping and I hadn’t even got out onto the stage yet. Some tears, full body goosebumps and a steely determination. YES I can do this. Cry my way down that stage – who cares! Well the music started and off we went and can I say I was having such a fabulous time from start to finish that tears were at the back of my mind. I LOVED it, and apparently I ROCKED it. Feeling the love from my Very emotional amazing Mum, my very best friends and my fabulously flat friends – it was a huge boost for me. I felt so loved and supported and confident.

Unforgettable.


So that was the afternoon show.

 And then the Evening show began..I walked (strutted) out again, this time to less whooping but all I could see was my amazing Husband Doug, my rock. Gorgeous and extremely emotional (sorry Doug!) standing watching in the kilt he wore when we got married. We’ve been married for 10 years in a few weeks and this was so meaningful to me. We need many many many more years. Once again I utterly loved every minute on the catwalk. It was amazing. My wonderful Oncologist was in the Audience along with other medical staff from the hospital where I have my appointments. And yes it was nice to be escorted by a famous rugby player but I only have eyes for Doug.

So what a day. I’m still buzzing. Thank you to Breast Cancer Care. Thank you to everyone who was part of my day. Thank you for coming and cheering. You know how much I love you. Sorry to those who couldn’t make it, I hope you enjoyed all the pics and videos and felt part of it. This has got me through yesterday’s chemo (back to reality!) and has restoked my fighting spirit.

It is up there with the top days of my life. Graduation day, Our Wedding day, Callum being born, Hannah being born. And then achieving that lifetime catwalk model dream. A box ticked. Lucky me xxxxxxx

Read Rachel’s blog https://dingdinground3year3.wordpress.com/

Ducks and Buddhists ~ Nina

Looking at the skies for something, finding ducks and accepting help

With all other changes to myself, my surroundings, my friends, my life; I do recall that May last year still felt like May always had. It's always been my favourite month. And perhaps more a splodge of ego than anything else winning me over- for it is my birthday month- I do recall it felt the same as ever and that was wonderful as I don't even feel like me anymore so why should May feel like my special month. May was always a month of newness, freshness, colour, sunshine and an enormous dose of shaking up and shaking off. But this year especially I had felt like a closed oyster. Tight and tough, cross and yet well protected in my shell. I still tried to occasionally walk a little way though since chemo stopped and even whilst I was paying for it for a few days after, I tried to convince myself I could build up my muscles and get outdoors again. The picture above was one of those days. And what did I get rewarded with? A giant duck- what else?!

But bone mets don't work like that. Muscle is connected to bone, bone is fragile and extra pressure on bone is not recommended- at least by my oncologist and osteopath. I was saddened. I'd taken so much pride in creating this ‘outdoorsy girl’ since my first brush with cancer ten years ago. Go get some bloody hobbies I thought, get up out and LIVE! Do what all the cancer positivity seems to be saying. And I did, I really did. I ate well, got fit, got superfit, took some outdoorsy qualifications and oomph I was off. I left my husband, found my first love and ‘did stuff’. I'd never felt so free either and so able to express myself outside of an increasingly dreadful work environment in FE. I had reinvented myself and I quite liked her. 

But now here I was. Am.

I'd thought about dying several times. My first love left once it was clear what my life would be like. Or did I push him away? It's possible but it's also possible I was protecting myself for I knew he'd never care for me. His ego had got more enlarged in our lives and he earned himself the nickname of Munchausens Matt due to his penchant for hospital beds and doctors surgeries. It was scary.

I did a few cool things with friends, some bucket list stuff which actually felt like a necessity back then but I got increasingly tired and less able to manage some of my wonderful ideas about what fun was (and it wasn't climbing up 127 steps to a sticky cottage in Whitby- though once we'd got up or down that was pretty nice). I got some complimentary holidays too from a couple of great charities and a fabulous friend who's still leading the support at my rear and had great laughs with family and friends. But it was so very tough and I began to realise that home was where I was happiest and safest. And more comfortable!

But back to May. I'd recently finished a long and arduous chemotherapy of docetaxel and I really did feel dead inside. Body working but my spirit felt kicked around. What on earth was living? Is this it? Can I choose my own way out of this? My heart was with my children though and I felt like on reflection they kept me hanging on in there like their smiling faces did for me ten years before whilst doing a similar treatment. Primary cancer felt like there was a mountain to climb. And then get off. In comparison Secondary felt like a plunge pool of gunk- never to get out of or wash away . I felt so trapped and battered down. Is this it I kept thinking? And then the book came.

How To Be Sick: A Buddhist Inspired Guide For The Chronically Ill And Their Caregivers by Toni Bernhard. The book came with me each morning to the bath. I would soak my sore and aching bones until cool and then covering myself in a thin towel, take the book quietly back to my bedroom. I didn't want to be ‘ chronically’ anything though. I'd always tried to maintain a hard, tough ‘in-charge’ exterior and this wasn't my idea of tough alpha girl material. And I didn't want to be sick. I wanted to fight it to build it up to walk it off to shake it out. But I cowered inside like a small thing and after a shaky start read and read and read this ‘bible’ of support and hand holding and spirit building and of courageous living. Toni Bernhard gave me a promise of a ‘not too bad life’ and that felt better than ‘good enough’ it felt achievable and realistic.

“There is sickness here, but I am not sick”; again she meditates, “There is sickness here but I am not sick”. Perseverance wins as she realises after saying again, “Of course, there is sickness in the body but I am not sick!”. What Bernhard described as both a revelation and a source of great comfort was her discovering the Buddhist sense of Annata, or an unfixed or unchanging self. A revolutionary departure from its Hindu roots, the Buddha offers to the disciple a sense of a self which is fluid, as she says “ an ever changing constellation of qualities” (p.38).

So here I was. Soaking to the point of deep wrinkling. Osmosis occurring as my body offers its own water to that of the bath. As pink and wrinkled as a newly born Aardvaark. I'm not sick.

Stage IV and beyond... ~ Vicky

June 19^th 2006 is one of those dates I’ll never forget. I was dragged kicking and screaming into the world of cancer when at the tender age of 31 I was diagnosed with a grade 1, stage 1 primary breast cancer.

In a nutshell, I had surgery, was told to go away and have the family we so desired and in the nicest possible way, never to darken the doorstep of Oncology again!  I took on the mission and welcomed my children in 2008 and 2010, and over time and with optimism, cancer was relegated to lower leagues while I threw myself into family life.

Fast forward to early 2015, I developed difficulties with my usually trouble-free back, and at the same time was called for investigations on a suspicious axillary lymph node that had reared its head on a routine check-up. 

And so it came…the first strike…the cancer was back!

Then June 16^th 2015, the big C bomb dropped…it was stage IV/metastatic breast cancer.

There is no stage V.

So there it is…40 years old with a metastatic cancer diagnosis. Let’s leave that hanging for a moment.

~

So, what is stage IV/advanced/metastatic breast cancer?

Millions of cancer cells form a tumour. The original cancer in the breast is known as a primary breast cancer.  People do not die from cancer that remains in the breast area.

Secondary breast cancer occurs when breast cancer cells spread from the primary cancer in the breast to other parts of the body. This may happen through the lymphatic or blood system.

You may hear it referred to as:

• metastatic breast cancer
• metastases
• advanced breast cancer
• secondary tumours
• secondaries
• stage 4 breast cancer.

The most common areas breast cancer spreads to are the bones, lungs, liver and brain. When breast cancer spreads, for example to the bones, it is called secondary breast cancer in the bone. The cancer cells in the bone are breast cancer cells. 

A diagnosis of secondary breast cancer means that the cancer can be treated but cannot be cured. The aim of treatment is to control and slow down the spread of the disease, to relieve symptoms and to give the best possible quality of life, for as long as possible, but this can vary significantly between individuals.

Information about metastatic/advanced breast cancer can be found at www.secondhope.org.uk

~

So here I am now living with an illness that will cut my life short one day when the treatment options run out, but I suppose tomorrow is never a given to any one of us. However MOST people will grow old with their loved ones and live to see their children/nieces/nephews move on through their lives, careers, get married and have their own children.

We should perhaps live in the moment more and less emphasis should be put on milestones, but the uncertainty of living with a life limiting illness is not the same as the general uncertainty of everyday living. Nobody knows what might happen when they leave the house each day, but this is different. You do find yourself looking ahead; wondering if you’ll be one of the lucky ones who make double figures, if you'll see your young children hit milestones, guide them through adolescence and less likely into adulthood.

While wading through a sea of uncertainty, I read a comment on a forum about traumatic events happening in our lives for a reason, to make us stronger or help us grow, but this just doesn't sit right with me. Almost immediately I stumbled upon a blog by Tim Lawrence examining the topic of resilience in the face of adversity. He lives with cerebral palsy and epilepsy and believes no one should face adversity alone. He published a post entitled 'Everything Doesn't Happen For A Reason', which really struck a chord with me.

I have never questioned why me? Because I suppose why not me? But like Tim, I cannot accept that there is an underlying reason for the hand I have been dealt. My diagnosis may give me more focus but will taint my life in other ways. Our children may be encouraged into a purposeful life as a result but it will destroy our family unit, and where's the reason in that?  My family, friends and our incredible children do not deserve this, and neither do I.

There is often expectation that the only option in these circumstances is to always think positive but the post reinforced that I can give myself permission to be sad and grieve for the life I had and for my young family's future...this is normal behaviour in the face of adversity.  So between my own abundance of positivity, strength, resistance and even normality, I am allowed to feel the way I do now and again when the waves of grief and devastation crash over me and sometimes continue their onslaught all day. What I have learned though is that on those days I know I can make it out of the other side and pick myself up, and that as long as I do, our family unit will lso will tarnish my life in others. My children may be encouraged into a purposeful life as a result of this but the other side is that it will destroy our family unit, and where's the reason survive for now. Slowly, quietly, never giving up.

I cannot fix this but I will carry it.




http://www.timjlawrence.com/blog/2015/10/19/everything-doesnt-happen-for-a-reasonnnot accept that this needs to happen to me in order for me and my family to grow.

This article has helped confirm that I do not have to think positive all the time as is often expected and unfortunately this is me now so if people can't handle me having negative, down days I cannot use energy on this. I am allowed to grieve for the life I had, the life I want, which is not to be embroiled in stage 4 cancer, and to grieve for my young family's future. In between my positivity and strength I am allowed to feel the way I do on some days when the waves of grief and devastation crash over me and sometimes continue their onslaught all day. What I have learned though is that on these days I know I can make it out of the other side and pick myself up ready for battle again and as long as I do, our family unit will survive for now. I cannot fix this but I will