Day 30 #pathways2resilience ~ Tamsin

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

Daring to Disturb the Universe…

In today's post for our month long feature #pathways2resilience, Tamsin shares how meeting Naz, Vicky and the support of women in the group led her to find the courage to submit a blog to HuffPost UK.

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When Naz asked me to help with administration tasks associated with the Centre for Building Psychological Resilience in Breast Cancer in November last year, I might have said no, because, like anyone, I find there aren’t many spaces in my life, filled as it is with work, being a mum and keeping my post-cancer-body in line. But as it turns out, I’m still not very good at saying no, and maybe that isn’t a bad thing.

I’ve always been a quiet kind of girl, a stage-hand rather than an actor, so I’m still not quite sure what happened at about 3.30 p.m. on Thursday 31st March 2016 when I dared myself to try and write a blog worthy of being featured by the Huffpost UK. Earlier that month, while recovering from surgery, I had spotted a blog by the wonderful Laura Dodsworth hosted by Huffpost UK as part of a month-long project entitled ‘All Women Everywhere.’ Having thoroughly researched a number of on-line blogging guides for Naz so that she could submit a blog highlighting her work, I knew I had to come up with 700 or-so words in an opinion-led style on a topical subject.

In a mere hour, seemingly from nowhere, I wrote ‘The Gift of Fear - Or How Fear Saved My Life.’ This was followed by an agonising 30 minutes of procrastination about whether or not to send it off - Do I really want to do this, I wondered? Is it even good enough? Why would anyone be interested in anything I’ve got to say? How would I feel if the Huffpost UK were to say NO? Ironically, it was this fear which prompted me to hit the send button at around 4.55 p.m., with five minutes left before the project ended. After all, I decided, it would be too great an irony to allow fear to prevent me from daring to submit a blog about fear.

I’ve tried hard to get to a point where I see my experience of cancer as one of many chapters in the book of my life. But the truth is that when I found out I had a BRCA1 mutation, I felt like cancer was not only in the pages of the book of my life, it was in the ink and the spine. You see, every cell in my body is unable to make a protein that inhibits tumour growth of certain cancers and I’ve had a rare, aggressive breast cancer, not once, but twice. Between 2009 and 2012, I was on chemotherapy for over 9 months, had radiotherapy for 6 ½ weeks, and underwent 7 major operations, 3 of which led to me being in HDU, one during chemotherapy. At one point I was so traumatised by my experiences of surgery and post-surgery that I became afraid of sleep, suffering from terrifying lucid dreams, half conscious and unable to move. Outwardly I was positive, and many aspects of my life carried on as normal, but I just didn’t dare to feel my grief, my loss, my pain.

Looking back, I think I became mute as a result the shock of these experiences. So maybe you can understand then what it means, not only to be able to write about aspects of my experience of cancer, but to have my meagre offerings published - I feel as though I have learned to speak again.

I could never have imagined how much the course of my life would be altered by my friendships with Naz, Vicky and the women in our group. I could thank Naz and Vicky for so many things, but what I thank them, and Anita, for most, is for helping me to find the courage to be daring, to be bold and to dare to disturb the universe - just a little.

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 29 #pathways2resilience ~ Sarah-Jane

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.

https://www.amazon.co.uk/Worms-Parachutes-Mystical-Allies-Survival/dp/1482058111/ref=sr_1_1?ie=UTF8&qid=1475181631&sr=8-1&keywords=worms+on+parachutes

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

Lots of love

Sarah-Jane Phillips

  

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 28 #pathways2resilience ~ Mandy

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.

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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

Day 27 #pathways2resilience ~ Jenny

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

Weekly Discussion Summary ~ Seeking Perfection

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

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

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