Day 25 #pathways2resilience ~ Bal

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

Here are the colours of my journey.........

In today's post for our month long feature #pathways2resilience, Bal shares how she was diagnosed with breast cancer at a routine medical checkup after her holiday, the challenges of her treatment and the impact on her life, as well as what her family would say.

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Here are the colours of my journey on Planet ''C'' for the last 10 months :(

After having an amazing holiday in July 2015, a routine medical checkup in August 2015 confirmed my worst nightmare ever....when the consultant uttered those devastating words - "You have stage 3 invasive carcinoma breast cancer!" Floods of tears came tumbling down my face, as my hubby was in a state of silence, shock, horror, call it a million emotions going round in my head. There is no history in my family so why me? life is unfair etc. etc....

“Am I going to die?” was my first reaction. The consultant was lovely and he said 'Certainly not, I promise you are going to be okay'.

My son was only 15 years old, no child should have to endure such a trauma like this. He asked "Mum are you going to die?'' I quickly responded "NO" and that was when I found my inner strength/resilience to fight with every last breath in my body. Without the lovely support of my medical team/family/friends/neighbours/work colleagues, breast cancer mentors, I would not have got through such a long journey. I knew god only tests those that are strong enough to fight.

I had a mastectomy on the 12th September, then lymph node auxiliary clearance 10th October as the pathology results revealed two nodes with tiny spots which had not become active but a second operation was required. Then 12th November, chest port cannula, another operation under local anaesthetic, 13th November I started 8 sessions of chemotherapy, (4 FEC,4 Taxotere).

The last 4 chemotherapy treatments were the worst days my life.....swollen hands and feet, palpitations, constipation, fatigue & above all chemo 7 blood count was very low so I needed two pints of blood transfusion the day after chemo…deep joy!! I couldn't get out of bed for 7 days. My new hobby was sleeping for 18 hours a day!! I could not see the light at the end of the tunnel but perseverance, as Winston Churchill would say, ''If you are going through hell keep going.''

I may not be there yet but I'm closer than I was yesterday.

13th May 2015 I started radiotherapy for 15 sessions daily…a walk in the park as my oncologist commented but it peaked one week after, oh boy the fatigue hit again when I least expected.

When I was going through treatment, I had this goal in mind and trained on my good days and took part in the 10k Race for Life just 3 weeks after my treatment finished.  I feel proud to have raised £1500 for such a worthy cause. I also joined Breast Cancer Care support service, 'Someone like me.'

My outlook on life since 'C' has changed - lots of positives. My son has matured so much since and has passed his GCSEs with flying colours…A* or As in all his subjects. My hubby and I have been married for 25 years (lovely holiday in the paradise island of Mauritius), my sister in law is expecting her first child in February 2017 and my nephew has recently got engaged and is getting married next year. It's been 1 year (September) and my mammogram and scan are all clear, so life is good and I am thankful to be alive.

So as my family would comment:-
Rocky, Bal, Buah
Rocky represents the ups downs of my journey that I endured in the past year.
Bal as I'm known to many friends/colleagues by.
Buah meaning Auntie, what my nieces and nephew call me.

I AM A SURVIVOR!!

#pathways2resilience #bcresiliencecentre
#panningforgold #breastcancerawareness

Day 24 #pathways2resilience ~ Penny

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

The Cowards Guide to Cancer...

Is bravery essential for survival? What do we do when we can’t feel brave? When we are too weak to feel brave? When our vulnerability takes the better of us, and we have no option but to commit to it. Are we a coward then? Or is bravery not an option on the menu of things to do to survive?

For our month long feature #pathways2resilience, Penny, another wonderful member of our centre, shares her resilience story 'The Coward’s Guide to Cancer' here, and how she made it to go public on The Sun Online, when she did not consider herself brave!

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A close encounter with a bear while walking with a friend in Canada made me realise just what a coward I am. The bear was approaching us and we were alone. My friend had not seen it. Before setting off on the trail we had taken advice on how to behave should one meet a bear in the wild, but my mind went blank. Instinct took over. So what did I do? I pushed my friend between me and the bear and hid behind her. We survived, and I think we are still friends. We both know I may not be relied upon in moments of crisis.

To me, bravery is that demonstrated by those prepared to dash into a burning building to save others. I see bravery on those 999 style documentaries where firemen and medics put their lives on the line to save a stranger. And yet, from the moment I was diagnosed with cancer I was considered brave. Strangers approached me in cafes, gently touched my arm and remarked on my bravery. What nonsense. Each time I sat in a chemo chair while a nurse fed poison into my veins I felt like the passive recipient of a treatment that sometimes seemed worse than the disease, yet if I wanted to survive this seemed the only option. Hardly a brave a decision. At times I thought, “bring it on, consider me brave”, I’m not immune to the joys of a compliment however ill-deserved. Yet gradually the bravery badge felt like a burden. Once I was labelled and praised for my bravery it seemed there was a heavy expectation on me to cope, to not look ill, to cry only in private, to protect those around me from the realities of a dread disease.

But I did cope. I had no choice. Often I did it through the care of remarkable strangers who became “virtual” friends. I found these people online, in support groups like “Inflammatory Breast Cancer Support UK”, “Building Resilience in Breast Cancer” and “Flat Friends”. These groups are full of women who are not brave, just remarkable. In these closed forums we can rant and rave, share our fears and experiences in a way that we sometimes feel unable to do with our nearest and dearest. I confess to having few people to call in the dead of night complaining of chemo induced constipation and mouth ulcers or who want to hear my steroid fuelled nightmares about dying and being laid to rest in my best dress but bald. Yet online, there was usually someone ready, without judgement, to "listen" and share similar fears and extraordinary body functions. Through the best of intentions, those closest to us often don’t want to hear that we are suffering, that we are scared or, perhaps more significantly, the cancer has changed us. And I realised, that however often I cry, however often I can’t face the changes to my body, however often I mourn the life I feel I lost, like all the other women I am remarkable too.

I was diagnosed with Triple Negative Inflammatory Breast Cancer in 2013. To all intents and purposes I am “doing well”, but I still struggle at times to cope with the after effects of the treatment which include nerve pain from peripheral neuropathy, not to mention the absence of one of my tits. I wish this hadn’t happened to me and yet it has strangely led to some great things.

Whilst going through treatment I was encouraged to keep a diary. For the most part this was pretty dull reading. “Today I felt sick”. “Today my hair fell out”. “Today they lopped off my left tit”. I exaggerate, but you get my drift. Gradually as my hair began to grow, my scars had healed and I tried to resume a “normal” life, my diaries had a bit more to offer as I began to take stock of the emotional impact of the cancer and facing a “new normal”. And I started to blog at www.greatthingsaboutcancer.com . Writing has been therapeutic. The more I shared about the frustrations of life “post treatment” - dating with one tit, buying mastectomy bras, body image -  the more people got in touch with me to share their similar stories. From feeling isolated, I felt connected. I always enjoyed writing but my motivation waxed and waned, but now cancer has given me my writing mojo. I started blogging for The Huffington Post and was interviewed for the Mail and The Sun online – I am no Page 3 babe and so I never imagined my tits (well discussion about my tits) would ever make their way into The Sun.

My marriage failed just before my cancer diagnosis. I’m over 50, single with just one tit. This is not the life I had imagined for myself. Sometimes my future feels bleak. And yet, by opening up about my feelings in public, it has in turn opened up new horizons. These horizons range from the more bizarre, like being an extra in a vibrator advertisement, to those which aid a cause like an invitation next month to attend an All Party reception in Parliament in support of Breast Cancer Now, or being treated to a makeover and wardrobe styling session for a charity video for Macmillan and Clothes Aid or being interviewed for a research project at London Fashion School into how clothes and style impact on recovery in breast cancer. Amongst all the fear, pain and loss, there has been fun. And most of all, throughout it all, apparently I am VERY, VERY BRAVE!!!

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 23 #pathways2resilience ~ Caroline

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

"we have raised nearly £3,000 for groundbreaking breast cancer research at my old medical school....."

In today's post for our month long feature #pathways2resilience, Caroline, a Consultant Oncologist, describes how her discovery of a level of resilience and strength brought together her family and community.

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"Last August, I was devastated to be diagnosed with breast cancer - devastated for my young family (I have two little girls then aged 9 and 3) and terrified for myself. As a consultant oncologist, I knew just how cruel this disease can be.

I have had to find a level of resilience and strength I didn't know I had just to get through all the treatment physically, let alone deal with the emotional fall out. But with the help of family, friends and the amazing ladies I have met online through the Building Resilience in Breast Cancer Group and Younger Breast Cancer Network, I am now gently getting back to a life not centred around my illness - I am back at work which was a big concern for me - would I be able to look after cancer patients after being one myself? It's baby steps so far but with the help of this group, I think I'll get there!

My family are getting there too - it was important for us to be pro-active and we have raised nearly £3,000 for groundbreaking breast cancer research at my old medical school in Nottingham - it's brought us closer together and shown us how fabulous our local community is!"

#pathways2resilience #bcresiliencecentre
#panningforgold #breastcancerawareness

Day 22 #pathways2resilience ~ Ruth

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

'I graduated from an MA in Victorian studies this year...'

In today's post for our month long feature #pathways2resilience, Ruth shares how her diagnosis of breast cancer in 2004, followed by a recurrence led her to pursue a long-term goal to enrol on an MA in Victorian studies.

I was devastated to be diagnosed with breast cancer in 2004 and again with a recurrence in 2008. I truly did not expect to be around for very long after the 2008 recurrence which was in the lymph nodes in my chest, but after surgery, chemotherapy and a year on herceptin I decided to take it one day at a time and see what happened.

I tried very hard to put the cancer to the back of my mind, which was often hard, because the 'black cloud' often threatened to descend (and sometimes succeeded in doing so. At those times, and during the 'scares' that happened several times I found the support of others (usually online but sometimes face to face) was absolutely invaluable.

I changed my job twice during the last 8 years and eventually went part time. I decided to take the plunge on one of my 'bucket list' wishes and enrolled on a MA in Victorian Studies in 2014. I graduated this year and it was the most amazing and fun time (although pretty gruelling and stressful at times too).I've also taken the opportunity to take holidays when I could including a trip to Moscow where my son was at University just a few months after finishing treatment in 2009.

Nearly six years ago my first grandchild arrived, and I feel so grateful to be able to have her in my life. I'm currently feeling well, still on hormone therapy and tablets for bone-thinning, and also have lymphodema in my arm, but I have had some amazing times in the last 8 years. If anyone had told me in 2004 that I'd have done and achieved so much I'd have told them they were mad! Lots of love and luck to anyone starting out on this journey. I wish you all well.

22/10/2016

Day 21 #pathways2resilience ~ Jan

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

“That scar will remind me that I survived cancer.............I am happy to be alive, scars and all; my body is different, my mind is different, and the future is not as certain as I once thought it was - but I survived!"

Thank you Jan, for sharing your resilience with us for our month long feature #pathways2resilience

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Breast cancer hit me like an 18 wheeler truck, in the middle of my life, just after the birth of my first grandchild. I was otherwise healthy and happy then it came and knocked me sideways. My reaction to diagnosis was simple, “Right, what do we do now?” and that was my attitude for the rest of my treatment. 

An important moment came the day after my mastectomy, an older lady came into the ward and occupied the bed opposite me, she cried at everything that happened, when the nurse came to measure her for her support socks – she cried, when they came to take her blood pressure – she cried, when someone asked what she wanted to eat the next day…everything led to tears. I tried making conversation, just smiling, anything, but she wasn’t open for any kind of contact. After several bouts of tears and refusing to cooperate with staff, a nurse asked me to try and talk to her because I was so cheerful (I don’t remember being THAT cheerful lol).

I sat on the end of her bed and asked if I could help with anything, she asked me what I’d had done and when. I told her about my surgery and that it was the previous day.  She asked if I’d looked at my scar yet and how I managed to stay so happy when for the rest of my life that scar would remind me I’d had cancer?

Without stopping to think for a second I answered:
“That scar will remind me that I survived cancer”.

Despite some difficult times since then, two more surgeries and the usual side effects of chemotherapy and Tamoxifen, I can honestly say that I am happy to be alive, scars and all; my body is different, my mind is different, and the future is not as certain as I once thought it was - but I survived!

I had this tattoo done after my last surgery...

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 20 #pathways2resilience ~ Vicky

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

“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.”

Today for #pathways2resilience we are featuring Vicky, one of the Centre’s deputies. Vicky was diagnosed with secondary breast cancer in June 2015, she has two young children, and she is learning to live with the psychological impact this diagnosis brings.

In her feature she talks about the Centre and about her recent venture into the world of politics!

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I was diagnosed with secondary breast cancer in June 2015 at the age of 40, nine years on from my primary diagnosis. Through the haze caused by the crushing anguish of this diagnosis I found myself venturing back to online breast cancer support groups. Around October last year I stumbled across and joined the fledgling psycho-educational group ‘Building Resilience in Breast Cancer’, the private member group of The Research Centre for Building Psychological Resilience in Breast Cancer, headed up by Professor Naz Derakhshan. By the end of the year I had been recruited by Naz and deputy Tamsin to assist with running the group. We have seen our private support group expand and flourish, we have established our public page and after working together so closely, the three of us are now firm friends for life.

Earlier this year Tamsin and I developed and launched the Centre’s blog, Panning for Gold. The aim of the blog is to provide an inclusive space which represents the many voices of women with a breast cancer diagnosis. I braved writing a couple of blog posts myself around the subject of secondary breast cancer, one of which I wrote a year on from my diagnosis.  

Link to One Year On: http://bcresiliencecentre.blogspot.co.uk/2016/06/one-year-on-vicky.html

In addition to helping out at the Centre, I have recently found myself volunteering with Breast Cancer Care at two events to promote their ‘Secondary. Not Second Rate’ campaign. I attended the Conservative Party Conference in Birmingham, then the following week joined them again at an event at The Houses of Parliament. Being involved in this type of event really highlights the lack of knowledge out there over the difference between primary and secondary breast cancer and because of this secondary breast cancer does not get the coverage and funding it deserves.

People don't die from breast cancer in the breast and local area (Stages I/II/III) however 30% of people diagnosed with primary disease go on to develop secondary breast cancer (Stage IV), where it spreads to distant areas of the body. Around one person every 44 minutes dies from SBC in the UK. It has NO cure and many people don’t know this fact. With access to the best available care and treatment it can in some cases be managed and controlled for some time but still secondary diagnosis sees only 15% surviving 5 years and 10% surviving 10 years.

Upon speaking with Jeremy Hunt, Secretary of State for Health at the Conservative Party Conference, the message we heard from him was that early detection of primary breast cancer is the key to dealing with the disease and while I agreed that this can make all the difference with the outcome for many, I politely voiced that despite my breast cancer being detected very early, my cancer still spread and now I’m living with secondary, incurable breast cancer.

At the party conference in addition to Mr Hunt we met and spoke with cabinet ministers Justine Greening and Damian Green, along with staunch Breast Cancer Care supporter Craig Tracey MP and many other MPs, all of whom were receptive of the discussion, some learned something from us and some were stunned by what they heard.

 

Following on from this, ahead of secondary breast cancer awareness day, I attended the Houses of Parliament with Breast Cancer Care to continue with the campaign and meet with MPs who had agreed to drop in to the event, which was opportunely directly before PMQs.  The MPs were again receptive and came to understand the difficulties we face living with secondary breast cancer.

The ‘Secondary. Not Second Rate’ campaign has a few key points and the main focus at the events was on secondary breast cancer data collection by Hospital Trusts. Breast Cancer Care has discovered that even though it has been mandatory for 3 years, only one third of trusts are recording when people are diagnosed with secondary breast cancer. This means there is no accurate figure of the number of people diagnosed or living with secondary breast cancer, and makes it impossible to plan services.  This crucial information would highlight how effective primary breast cancer treatments are and it would ensure the more efficient delivery of services and treatments to secondary breast cancer patients.

Following the Houses of Parliament event, Jo Churchill MP, raised a question at PMQs about secondary breast cancer data collection. Unfortunately the Prime Minister wasn't prepared for the question and doesn't appear to recognise the difference between primary and secondary cancer.  It was however great to see the subject raised, so Breast Cancer Care will be working hard to keep up the momentum. I am proud to have played a part in this and just hope we can make a difference.

Here’s hoping for a future living better and for longer with secondary breast cancer.

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 19 #pathways2resilience ~ Rachel

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

“I am still STABLE”….

Today we are delighted to present Rachel, whose fantastic blog ‘Could this be (one of) the greatest days of my life’ we featured back in April. For #pathways2resilience Rachel has shared a post with us from her own page earlier in October delivering good news to her followers: 

“I've had my scan results and I'm delighted to say I am still STABLE. What is this world that I live in where it can be good news and worthy of celebration to hear the news you still have cancer and sorry but it's not any smaller but it's not any bigger either, and it's nowhere new. Well this was my news today and my first thought was hooray. This is the world I will live in for the rest of my life. Stable buys me time, time with my family, time for Fun and laughter and time for the hope for a cure to exist in my lifetime, for me. Thank you to everyone who is there for me. Words can't describe how much support I need and I am truly grateful for the love that is shown to me. Chemo again Monday. Number 24. But I am ready. Bring it on xxxx” 

Today Rachel would also like to mention another group she belongs to where everyone is so wonderfully supportive:

"I'm part of an online group called Flat Friends that supports ladies living without reconstruction after mastectomy. No matter what's going on in our lives you are never alone once you are part of Flat Friends."

Link to Rachel’s blog: http://bcresiliencecentre.blogspot.com/2016/04/could-this-be-one-of-greatest-days-of.html

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness