Saturday 29 October 2016

Day 29 #pathways2resilience ~ Sarah-Jane

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

Today for our month long feature we are delighted to share Sarah-Jane’s story.

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October, - Breast Cancer Awareness month, the month that seems to symbolise moments of reflection for me. It is nine years since I was diagnosed with Breast Cancer and there are times today, when I look back, that I feel it is unbelievable to think I experienced something so absolutely harrowing; that a tiny lump in my left breast would cause so much heartache and pain: that my contented life was momentarily turned upside down in a split second.

It’s true, no matter how far down the road you may be from your diagnosis, how you wear a continuously radiant smile because you are fortunate to belong to a group known as the survivors, and continue to be one of the lucky ones, you are reminded of all that you went through, but equally of just how far you have come in rebuilding your life. I write that sentence with my fingers and toes crossed and pray this will always be the case. I also find myself taking a moment to think of all those who have not been as lucky as me, those that face a secondary diagnosis and live every day with enormous strength and bravery along with huge uncertainty.

I believe the majority of people faced with such a devastating diagnosis of hearing the petrifying word ‘cancer’ quickly cascade into a lonely, terrifying deep and dark black hole where the heavy clouds prevent any glimmer of light to touch you. Your carry all of your fears on your shoulders and you feel as though they will never be lifted. Then you start on the treadmill with treatment, most commonly surgery, chemotherapy, perhaps radiotherapy. We lose our femininity. For me, initially, it was my breasts, then my hair, then chronic bloating a common side effect of chemo. Every wave of emotion was felt. Then miraculously, almost in what appeared to feel like a few moments the light began to penetrate the darkness -unknown opportunities quickly blinded me. I emerged strong, ironic that you are faced with adversity to realise your inner strength and real potential. I wanted to share my own experience to educate some but also to empower others and inspire those who are about to begin on their own breast cancer journey. That journey is a tough one.

It felt like my breast cancer journey was a long one. Complicated by my previous childhood cancer when I was only sixteen years old. I was diagnosed with Hodgkins Disease or Hodgkins Lymphoma as it more commonly known these days, a cancer of the Lymphatic system which affects the white blood cells. At 16 I faced rigorous chemotherapy followed by pretty horrific radiotherapy which was given to me every day for six weeks. People have asked me frequently how I actually felt facing cancer as a child. The truth is I felt as if my parents protected me from the serious consequences of a life threatening illness and I didn’t fully comprehend such a diagnosis until I was diagnosed at the age of 36 with triple negative breast cancer and a mummy to two young daughters. That’s when I fully comprehended the extent of what cancer was capable of within the body and psychologically and what major impact it would have on my future life. It’s true to say, like many others faced with any kind of personal misfortune, I am determined and there have been many occasions that I have needed to prove this in life. It was my encounter with breast cancer that made me passionate to try and make a small difference to the lives of those facing a diagnosis today.

As soon as I reached the end of my treatment, which incidentally involved a full mastectomy with immediate free tram diep flap reconstruction, followed by 8 sessions of chemotherapy, a preventative second mastectomy again with immediate Igap reconstruction which actually failed and was followed a few months later with a second Igap reconstruction which took a very long 26 hours in surgery for my surgeon to perform, I was adamant that I wanted to go and try to help others as I want their experience to be a positive one. As bizarre as it may sound I felt as though I had been very lucky to have an amazing medical team around me who also had access to ensure that I was given the best care and the latest drugs that were available at the time. A classic scenario of wanting to give something back for the amazing care that I had received.

Research is vitally important to me. We need to improve the quality of life for patients going through treatment so I chose to support an amazing charity called Breast Cancer Now as they specialised in the area of research amongst other things. Not being a runner at all I thought I would compete in the London Marathon to raise much needed funds exactly 12 months from the date of my end of treatment. I learnt then, that the mind is incredibly powerful when pushed to the absolute maximum. How I trained for it will probably remain a complete blur especially as I was a total novice but I did complete it with huge satisfaction that the pain was worth it as I managed to raise over £10,000, and that was the focus that inspired me putting one step in front of the other!! I still don’t know how I actually did it, but I have a little medal that I am extremely proud of that reminds me that my dedication to the cause was definitely all worth it.

So the marathon was me giving something back to research. Then an opportunity came to set up a local support group for the charity Keeping Abreast for the Hertfordshire and Bedfordshire region. Primarily to offer support to ladies considering breast reconstruction following their mastectomies. I absolutely love it, especially meeting new people and helping them through their surgery and beyond. It is something that I am really passionate about as I feel like we are supporting the ladies through a very daunting and difficult time and we all feel within the group that this is rewarding for all of us. We love our fundraising too which allows us to provide patients with a bra voucher after their surgery just so that they can treat themselves to a new bra to try and help them feel special and feminine when they have healed.

My cancer experiences, especially breast cancer has allowed me to grow in ways that would never have been possible previously. I was such a frightened vulnerable patient who required constant reassurance that I really would be ok. Cancer has taught me to be many lessons. I am so grateful to everyone who helped me reach where I am today. I have met some equally inspiring ladies, some are involved in this group as well and it has been so moving to see them come through their ordeal and go on to help others too with such a selfless approach.


I did go on and write my ‘life story’ in my book called Worms on Parachutes, which is my thank you gift to the NHS who have helped me to be where I am today. If you do get an opportunity to read it I know you will love it, as many ladies who have shared their thoughts with me have expressed just how helpful they found reading it.

I hope you enjoy reading this little piece during Breast Cancer Awareness month.


Lots of love

Sarah-Jane Phillips

  


#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Friday 28 October 2016

Day 28 #pathways2resilience ~ Mandy

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

Life's too short to sweat the small stuff...

Today for our month long project we hear from Mandy who shares how her life has 'become more immediate' since her breast cancer diagnosis.

~

My life has become more immediate since my cancer diagnosis. I have spent all my adult life discussing life and death but experiencing it first- hand makes issues more pertinent. 

Life’s too short to sweat the small stuff and there is so much that could be done to improve people’s lives and to make people more aware of both the limitations of science and the unlimited potential of the human race.

Family and friends are key to a happy life but self-preservation must be developed as if they cannot survive without you, what happens to them if you don’t survive? Time in the sun, soaking up all the vitamin D3 you can manage, has to be planned and enjoyed but going with the flow is the best approach when dealing with other people, especially those who have some power or influence over your life and future.


My best advice – keep breathing deeply and enjoy what you can when you can. It may all change tomorrow but as long as you can see which way is up, celebrate the moment.




#panningforgold #pathways2resilience
#bcresiliencecentre #breastcancerawareness

Thursday 27 October 2016

Day 27 #pathways2resilience ~ Jenny

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

If you like stunning jewellery you've come to the right place

The adversity that breast cancer brings with it, is not a gift. But like Jenny, what we can do is to grow gifts from it. Here, Jenny, our wonderful ambassador shows how she turns the pain that she has endured to being creative about making stunning jewellery that she enjoys immensely. These gifts, she gives away generously. In fact, in one of our London meetups over lunch, her earrings, necklace, bracelets and rings, she happily gave everyone. We are proud of Jenny, and the enthusiasm she brings to the group is as stunning as her jewellery. 

                                    ~

So Pinktober is upon us again. Personally I prefer to keep my head down because my experience of breast cancer, like just about everyone I know who has also gone through it, is anything but pink. 

I've always had a bit of a 'give it a go' attitude, I suppose that comes from having been a single parent, so when I was diagnosed with primary breast cancer in December 2010 at the age of 48, the only thing I could do, once I'd picked myself up off the floor, was get stuck into the treatment and give it a go.

Lumpectomy, chemotherapy, radiotherapy, Herceptin and hormone therapy was a massive shock to the system, but with the help and support of friends who stepped in and just did stuff, like the parents of my daughters' friends who had my two girls forward sleepovers on chemo day, and my lovely boyfriend who let me stay at his and just brought me drinks in between sleeps, I got through.

But after active treatment has finished, you're still left with the emotional wreckage, and when others just expect you to be back to normal, only people who've been through similar experiences can truly understand. 

Fortunately, my diagnosis is slipping further into my past so the trauma of diagnosis and treatment becomes less “front and centre” in my daily life, but when recently diagnosed I was in contact with other women who had been through, and were going through, the same as me. One of those lovely ladies (Thank you Kim!) wanted to share an activity that she found relaxing and rewarding, so I and three others were taught the basics of making jewellery. It may not be for everybody (the other three enjoyed the morning but didn’t carry on) but after that first taste, I was totally hooked. I admit I was more surprised than anyone as I’d never seen myself as creative and didn’t really wear much jewellery, but I now really enjoy twiddling with beads, wire and semi-precious stones to make something pretty – which I usually give away because I can’t be bothered with the hassle of online selling as my photographic skills aren’t up to much. 

This is a picture of that very first piece that I made (goodness, is it really three years ago?) which I later gave as a present to my son’s girlfriend.





I have found that having an absorbing hobby that I have to concentrate on has provided very welcome stress relief, as it takes my mind off underlying worries and intrusive thoughts. Earrings, anyone?



27/10/2016

Wednesday 26 October 2016

Weekly Discussion Summary ~ Seeking Perfection

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Our Sunday topic this week was perfectionism: the already strong pressure to be perfect and how it may be intensified following a diagnosis of breast cancer. As always, our lovely ladies identified common themes but also confirmed that everyone's experience is unique.

As women living in today's busy world, the media tells us that we should strive to be perfect mothers, sisters, partners, daughters, friends, even perfect patients. All around us are airbrushed images of beautiful women juggling careers and children, smiling through every kind of adversity. Often after cancer we look much like any other woman on the street, well and glowing. We hide our vulnerability behind our positivity, we don't want to upset anyone by mentioning our big secret. Even those who have secondary breast cancer and face a lifetime of treatment and monitoring report striving to maintain the brave faced smile. Fear and vulnerability take a back seat so that we can appear strong for our families. Thank goodness for groups like ours where we can share our feelings and thoughts!

Having breast cancer may force us to make difficult decisions that scupper our long held dreams: for those who have children, we may feel we can't be good mothers, as we may have to hand over their care to others while we are unwell for example; for some, cancer puts paid to having more children; others may not get to have children at all. Careers get put on hold; some ladies choose to stop work, others just aren't well enough anymore so they have to stop. We feel we fall short, that the life we thought we were going to have is ruined. Physically and mentally it's tiring having cancer, fearing cancer, and many ladies can't do as much as before their illness (but it's unlikely that you would know that: they hide it well.)

There are lots of things we feel we ought to be doing. One is running a marathon, or at least a 5k race for life, as soon as we finish our last radiotherapy session. Some achieved this and did well, others succeeded but exhausted themselves, and some didn't have the energy to get out of bed, much less bake for the biggest coffee morning in the world. However we feel though, we do get up, do our best, smile and get on with being positive, almost every day. And if occasionally we succumb to feeling tired and low, and we take to our sofas or our beds, we feel guilty and weak. Not good enough.

Having breast cancer can teach some valuable lessons too. Many ladies report becoming softer, calmer, more relaxed, more approachable. Many ladies have learned to say No, and to seek out what makes them happy and not live to please others anymore. Many care less about what other people think of them. With messy reconstructions, one boob, lumpy bumpy lopsidedness, many learn to dress for comfort not glamour. Our new normal may surprise or upset our friends and family as we relinquish roles we thought were carved in stone, realising we have more choices than we thought we had. Our inner strength, the resilience we build, starts to shine.

Many report that they have been able to let go of high standards and high expectations in favour of enjoying life. We commonly discard housework! We take pleasure in the simple everyday things like walking in the autumn sunshine, enjoying a coffee with a friend, or reading a book. Perhaps for some, particularly those ladies who are older, breast cancer brings an opportunity to take stock, to decide what's important, and to live life our way.

However our breast cancer affects us, none deny that we are changed. Some feel guilty that they got off lightly with treatment or surgery; some feel they've let themselves and others down; some feel like failures, as if it's somehow their fault. Not only can they not achieve perfection, they feel less than good enough. And that's a subject for another discussion.

#ResilienceDiscussion




Day 26 #pathways2resilience ~ Clover

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

Designing, not Drowning

Meet Clover Lewis.

Do you know how many post-mastectomy brands have appeared in Vogue?

One - Clover Lewis Swimwear.

In its 100-year history the fashionista’s bible has never featured a brand aimed at the post-surgery market until now. Describing the range as “stunning” and saying it “can be worn by all women who desire figure-enhancing swimwear,” Vogue included the “Dive Collection” in the “Making Waves” edit in their celebratory 100 years edition, massively boosting diversity in the fashion industry at the same time.

Post-mastectomy, and conscious of her changed body, Clover was keen to treat herself to practical but flattering high-end swimwear for her diving course. “I wanted a bikini that would make me feel like the beautiful young woman I am” she explains. She searched, but to no avail. So, having previously designed costumes for the Royal Opera House, and not one to be defeated, Ms. Lewis got out her sewing machine and fashioned herself the perfect bikini, before boarding a plane, arriving in Bali, and bagging her Open Water Diving Certificate.

http://www.huffingtonpost.co.uk/.../designing-not...




 #panningforgold #pathways2resilience
#bcresiliencecentre #breastcancerawareness

Tuesday 25 October 2016

Day 25 #pathways2resilience ~ Bal

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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!!







Monday 24 October 2016

Day 24 #pathways2resilience ~ Penny

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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!

~

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