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

Worms On Parachutes ~ Sarah-Jane

“Breast cancer has taught me to reach for the stars as everything is possible if you remain positive and believe you can achieve everything you set out to do.”

I will always remember the waiting room on that Friday morning in June 2007. It was the day the words were muttered “it’s not good news afraid, its cancer.” I know many of us will resonate with the numbness that runs through our entire body and the immediate fears that flash through our minds as the consultant delivers this news in the softest manner possible.

Cancer and breast cancer was something I naively felt would never happen to me in my adulthood. After all my childhood had been plagued with ill health. Just as I was about to sit my final school exams, a blood test followed by a biopsy from a lump in my neck revealed the shocking news to myself and my parents. I had stage 2b Hodgkin’s Lymphoma. I had cancer in my neck, under my arms and both sides of my lungs. The only way to ‘cure’ me was to have 6 months of aggressive chemotherapy and 6 weeks of daily mantle field radiotherapy I remember sitting my GCSE’s two days after the end of my radiation treatment. As I write this I can still feel the heat of the school hall that afternoon. I remember sitting with my elbows pointing outwards to protect my underarms that had been burnt from this treatment and were weepy and sore. I was determined to sit my exams which had given me the focus I needed to get me through all of the treatment and would allow me to move forward with my life and bury the harrowing experience in my life which had been life threatening at such a tender age.

That’s just what I did. I moved on with life. I met my soulmate, we married and rather miraculously went on to have two beautiful daughters. I was told the implications of treatment may leave me infertile. I actually conceived naturally and really without planning!! Hence the arrival of my girls who were born 20 months apart.

Some of us just are not dealt a smooth ride in life. Something happens and we are faced with a cruel and bumpy journey. I discovered a tiny lump in my breast in the bath one evening. I hoped my worst fears wouldn’t come true but it wasn’t to be. I was diagnosed with grade 3 triple negative breast cancer. I recall being calm and phoning my friend immediately to collect my girls from school at the end of the day. They were only 7 and 5 at the time and I was 36. As I put the phone down I fell to pieces in the consulting room. I honestly thought I wouldn’t survive and I certainly wouldn’t be here to watch my children grow up and flourish. I was so scared with visions of all scenarios flashing through my mind. I took all the treatment offered to me, and I was going to do everything I could to help myself and survive. I was the patient who didn’t want to know too much. I needed comfort and reassurance from my medical team that they were there to save my life. At home I was so brave and I shielded my family from everything including my inner most thoughts. I was ‘mum’ the home still needed to run smoothly and I needed to be there for my children. Every morning throughout my treatment I would get up and put my makeup on in an attempt to try and make myself look the best I could even though I felt so rough. Behind all of that the only place I could allow myself to crumble were the consulting rooms of my local hospital when I attended for my treatment. 8 sessions of chemo and surgery. Initially a Mastectomy with immediate diep flap breast reconstruction. My choice 18 months later was to have a second mastectomy and reconstruction this time using the tissue from my bottom. But the reconstruction failed on that occasion and I made the decision to have a third attempt using my other buttock. (even bum lift hurrah!) 26 hours of surgery with the most amazing surgeon in my eyes anyway, but I know we all feel the same about our surgeons.

With my treatment coming to an end I found this enormous strength growing within me. I wanted to do something that could potentially help others at the same time as healing myself both mentally and physically. I decided to run the next London Marathon on behalf of the charity Breast Cancer Now (formerly breakthrough breast cancer) I wanted to raise funds to ensure that better treatments are constantly being developed to treat future patients to make their journey a little more bearable. I would also look after myself with the training regime and once more it gave me the focus I needed. I think it’s so important not to dwell too much on the negative things that can happen in your life. I organised fundraising events to attempt to reach my £2000 target and boy did it feel like an enormous amount of money to raise. I was blown away with people’s generosity and support to the cause that I have to believe is going to help to save thousands of lives. So as I pounded the street in all weathers the donations steadily kept coming. As I stood on the start line of the 2010 London marathon the realisation of what I was about to achieve suddenly hit me. I needed to cross the finish Line to feel worthy of raising a staggering £10,289 for the cause. That’s one challenge to have on your shoulders. Today those 26 miles remain the hardest miles of my life as I reflected on everything that I had been through. Thousands of lives are lost each year from this terrible disease but here I was running the marathon and raising thousands of pounds that would benefit others. That was the reason for my huge smile as I crossed the finish line weary and sore some hours later.

So with the marathon behind me the final part of restoring myself to my former self, the cherry on top of the cake, nipple reconstruction followed by Tattooing! The day I walked away from the hospital wards following that final stage of surgery I wailed like a baby and I was crying for different reasons than those on the day I entered the hospital to be faced with my diagnosis. When I didn’t know what lay ahead for me. This time I was leaving behind the team of people who had got me through things so graciously and had become my best friends. Nothing prepares you for that sense of loss you will feel when you say goodbye to those who save your life.

I had to do something to recognise these heroes of mine. I decided to write my memoir with proceeds going to the NHS Trust that ultimately held me together through my challenging moments and I have been overwhelmed by the positivity my book has received. A story I wanted to be inspirational to anyone facing their own journey today. I am an ordinary mum treated by my local NHS hospital a hospital I feel many people really value when it is needed the most. I’m delighted that many breast cancer patients have taken great strength from reading it.

Today nearly 9 years since my diagnosis I am in great health. I’m actually writing this sitting in the sunshine enjoying a coffee as I look out on to the Mediterranean taking a break visiting my family.

I’m now an avid supporter of Breast Cancer Now and continue to fundraise on their behalf. I really would love to see the day when nobody has to face the fear of dying of this devastating disease. I only organise simple events like afternoon teas. But by bringing people together to enjoy coffee and cake could actually save the life of someone else, after all it is perhaps what has helped to save my life.

I have set up a local group on behalf of another charity called Keeping Abreast, to support those considering breast reconstruction. It’s certainly where I feel my passion lies today and it’s important for others to see that you can come through your experience and achieve things that you would have never imagined would be possible. I know it may only seem like A very small gesture but I can’t wait for our lovely group to reach the stage that we can purchase our first bra vouchers so that patients can leave hospital with a voucher to treat themselves once they have recovered from surgery and to know that there are others thinking of them at a time when they are living a daunting experience in their life. I’m absolutely convinced my fundraising efforts won’t finish here as I think this is my way of bouncing back from my own difficult experience.

For those who would love to read Worms On Parachutes it is available from Amazon.
https://www.amazon.co.uk/gp/aw/d/1482058111/ref=mp_s_a_1_1?qid=1461261583&sr=8-1&pi=SY200_QL40&keywords=worms+on+parachutes&dpPl=1&dpID=41lx4uCGOoL&ref=plSrc

I hope you enjoy reading it.

Lots of love

Sarah-Jane Phillips

Who do you think you are? ~ Tamsin

When I was growing up, the word ‘cancer’ was always said in hushed tones. Although I knew that my aunt had developed breast cancer in her fifties and that my nana died of breast cancer, the C-word was not something that we talked about openly in my family. My sister and I were referred to a genetics specialist in our twenties and we both remember the doctor’s parting words - “You have nothing to worry about. Go, live your life!” So we did.

I won’t ever forget the Spring day in 2009 when I realised I had breast cancer. It was not long after my fortieth birthday and I was in my step-dad’s garden in Wales. He had died a few weeks previously and I was thinking about how much he would have enjoyed having me and my sister at home. It was during his illness that I noticed a change above my left breast, a few centimetres below my collar bone. Lying back in the grass, I was alarmed to find that the crab-like shape had grown without me noticing. I made an instant decision to return home to see my GP and it came as no surprise when, two weeks later, I found out that I had breast cancer.

My Oncologist asked about my family history and suggested a referral to a Cancer Genetics Clinic when I finished chemotherapy - he thought it was too much to deal with during treatment. I completed a detailed questionnaire about my family history over Christmas, contacting my father - who I am not in touch with - to complete the forms. He told me that I had a half-sister. With a growing sense of fear, I discovered that there was a history of cancer in my father’s family. Although fewer women were affected, their cancers had been deadly. I was desperately sad to learn that my paternal grandmother had died of breast cancer a few days after my birth. We had both been diagnosed at the same age.

In March 2010, the Genetics Consultant explained that all cancers are genetic in that they arise from the action of damaged genes. However, only 5 - 10 per cent of these damaged genes - mutations - are inherited from our parents. In the other 90 per cent or so of cases, the damage in the gene occurs in body cells across our lifetime, a so-called ‘acquired mutation.’ She said that I appeared at a very low risk of having an inherited mutation and I was not eligible for genetic testing. I was offered the chance to take part in a research study looking for other mutations which involved being tested for the BRCA1 and BRCA2 mutations. I agreed readily, wanting to do my bit for science.  

In the year I waited for the results, I began to ‘move on’ as they say. My hair grew back and my body recovered. There were even days when I wondered whether I had actually had cancer at all. I tried not to worry but I think it’s only when you’ve had a cancer diagnosis that you really understand what it’s like to wait for test results; the sick fear that sits like a toad in the pit of your stomach, the bargaining that goes on in your head. My strategy ‘to prepare for the worst and hope for the best’ sounds glib but in reality I end up in a kind of madness, swinging between wild optimism and hopeless despair!

Finally, the day of the appointment came around. Apparently against all the odds, I had a BRCA1 mutation. The news came as a terrible shock. I felt physically sick. All I could think about was my daughter and my sisters. I felt like having the mutation was my fault. I felt cursed. It terrified me.  

In the following weeks, I thought about the positives - ‘At least that explains why I got breast cancer’ or, ‘No one else in my family will have to go through breast cancer.’ It took a long time before I appreciated that I too faced ongoing risk - overall, women with a BRCA1 mutation have anywhere between a 60 - 90 per cent chance of developing breast cancer and around a 60 per cent chance of developing ovarian cancer. Just because I had got one breast cancer didn’t mean I wouldn’t get cancer again, in fact I might be more likely to develop another cancer. I felt like a cancer-bomb ready to blow up.

If your views about what women do when they find out they have an inherited mutation are based on the brave account given by Angelina Jolie Pitt, you might reasonably expect that once I found out I was a cancer-bomb, risk-reducing surgery was a no-brainer. Not a chance! I found I did not want to have a bilateral mastectomy. I had developed a deep fear of hospitals after my first brush with cancer. And anyway I liked having breasts, even if they might kill me. But, I rationalised, I didn’t want cancer again either. I found myself trapped in a Mobius strip of indecision. 

I tracked down other women with inherited mutations to find out about their decisions. Counselling helped me explore what my breasts meant to me, as a woman, as a mother, as a lover. I realised that although I would never ‘want’ to have my breasts removed, I could go ahead with risk-reducing surgery because it was the ‘least worst option.’ Over time, I began to feel empowered by my knowledge; unlike my aunts and grandmothers, I had the opportunity to give myself a chance of living a long and healthy life.

I did go on to have a bilateral mastectomy about 6 months later, but unfortunately, not without complications. A second breast cancer was discovered in the tissue removed from my breast. It was a particularly sneaky cancer because it had not shown up on any scans. The discovery that I would need another course of chemotherapy was devastating and I felt more alone and more frightened second-time around. I focused on making sure I was as well as I could so that I could manage the challenges ahead. I realised how lucky I had been - my decision to have risk-reducing surgery may have saved my life.

I eventually found out that I had inherited the BRCA1 mutation from my father. I had never spoken to my half-sister but after my first diagnosis we got in touch. By the time I was due to get my test results, I had her email address and was very much aware of her waiting in the wings. It wouldn’t be right to share my sister and half-sister’s stories, but it’s been incredibly hard to watch them grapple with their own genetic heritage. Just before Christmas me, my sister and half-sister met for the first time. Our developing friendship has been one positive thing to come out of everything.    

It’s hard to believe that so many women in my family had breast cancer and yet I know nothing about their experiences. I wonder how they coped. I wish that I knew how they had felt and what they thought about their illness. It’s this silence that has motivated me to share my story. I can hardly bear to imagine my daughter dealing with our family history. My greatest hope is that if and when the time comes, I will still be here to support her. I dedicate this blog to her.