Sunday 23 October 2016

Day 23 #pathways2resilience ~ Caroline

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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.

~

"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!"







Saturday 22 October 2016

Day 22 #pathways2resilience ~ Ruth

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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

Friday 21 October 2016

Day 21 #pathways2resilience ~ Jan

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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



~


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

Thursday 20 October 2016

Day 20 #pathways2resilience ~ Vicky

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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!

~


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.  



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

Wednesday 19 October 2016

Day 19 #pathways2resilience ~ Rachel

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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."




#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Tuesday 18 October 2016

Weekly Discussion Summary ~ Secondary Breast Cancer

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Our Sunday discussion this week focused on secondary breast cancer (SBC). In our private group we have members with both primary and secondary diagnoses and it became clear during the discussion that those with secondaries may be reluctant to share for fear of upsetting those with primaries. Getting this out on the table led to a frank and honest sharing of experience and feelings and many primary ladies were reassured by the positivity and resilience demonstrated by our ladies with SBC.

We are shocked at how ignorant most people are about SBC and what it means to get a diagnosis. Also called metastatic breast cancer (mets) it means that the breast cancer has spread to other parts of the body. It can be controlled through treatment but not cured. We would like to see more information provided to primary breast cancer patients, and to the general public, and more prominence given to SBC during the pink awareness campaigns.

Primary BC ladies live with a constant fear of secondary BC. Secondary BC ladies say they experience a different kind of fear, it's focused on keeping the disease at bay, on scans and treatments, and on living life to the full, each and every day. Resilience appears to increase for many ladies with SBC, there's a determination, a fighting spirit, a zest for precious life. The fear of uncertainty becomes channelled into living in the present rather than worrying about tomorrow.

We hope that this discussion has brought us closer together as a community of women living with breast cancer and we thank our SBC ladies for their willingness to share so frankly.


#ResilienceDiscussion


Day 18 #pathways2resilience ~ Nina

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

Dear Old Nina...
You will soon realise that things are allowed to be ‘just a bit of fun' and for no more reason than them being a bit of silliness. Remember Nina, not everything is about your cancer and certainly not about dying!”
In today’s post for our month long project we are delighted to feature Nina, who first wrote a fabulous blog for Panning for Gold back in March entitled Ducks & Buddhists about her secondary breast cancer diagnosis. For today’s feature Nina has shared a letter ‘New Nina' wrote to ‘Old Nina’ when her preconceived ideas about hospices were thrown out.






Going home from LOROS today after spending time on the ward; who would have thought that all of my pre-conceived ideas about what hospices do have now been thrown out? This has been a week of love, nurturing, laughter, hope and above all, lessons learned. As such, here is a letter to my old-self…
Dear old Nina,
Maybe you think you know what hospices do and maybe you know what LOROS does; you know that place you think of, up on the hill which you so highly regard but so deeply fear since your diagnosis. You go in the charity shops, play the lottery and with it think of all those lives that have been cut short without consent. You have sympathy but don't really delve any further.
And now your life is threatened and you think of LOROS again but not as a place you are supporting and fundraising for but now, as a place that you need. But that can’t be now, surely?
Things start to get a little bit tough and someone suggests you might like to go to the drop in sessions at LOROS. Right, I’m at that stage am I? You think. But something makes you go, despite you feeling incredibly cautious and fearful.
You'll have initial fears of being roped into things you don't feel happy about, or feeling inadequate as you’re dropped in with a group of older people, which I know is a big worry of yours because as much as you love them you fear them too. But don’t worry Nina, you'll look back and laugh. You will soon realise that things are allowed to be ‘just a bit of fun' and for no more reason than them being a bit of silliness. Remember Nina, not everything is about your cancer and certainly not about dying!
The staff will gradually and gently put you at ease, listen to your fears and let you work it through at your own pace. There will be tears, tetchiness and then most importantly, trust. "Slowly slowly, catchy monkey" our gran used to say didn't she? Well, lighten up I'm saying to you. Let go. No one there has an agenda apart from giving you what you need and whenever you need it. That's it. It's a unique type of care at LOROS and they see you as that unique person too.
Drop-in will turn into weekly day therapy sessions. It's a little more supported than drop-in and a volunteer picks you up because you can't drive too far alone. You get lunch, do crafts, get reflexology, a haircut or a manicure and most importantly talk to the nurses – I’m sure you know by now no stone is left unturned, and all those little niggles that you once had become vague memories as they dig gently away, making phone calls, chasing up support groups, doctors, hospitals even chemists. As I said, no stone.
It’s surprising that by visiting LOROS just one day a week, so much can be taken care of in mind, body and soul.
So time has passed and you will find yourself an inpatient on the ward – which you will fear again - to change over your medications under supervision. You will wander down to the Drop-In Session on a Tuesday, which is where you began your journey here. They’re doing flower arranging and you see your pals Gwynn and Dawn – oh yes, friendships, did I mention you'd make these? You'll sit and laugh and tease and gossip and plan. Then walk back to your room chatting to staff on the way, dropping by the aviary for a different type of chat, this time with the birds, then back to your private room.
You know you thought what hospices were? Well, you'll soon learn that you didn't know what LOROS was about at all. You’ll discover that it's very much for the living we are doing each and every day. It’s for our families and friends. It’s a complex and diverse machine powered by doctors, nurses, administrators, fundraisers, planners, spiritual advisors, therapists, volunteers all who want to and seem to love being here. No complaints, moans and groans; no laters, no can’ts, no couldn'ts.
You'll realise how much it has changed your life for the richer and your families too, as the responsibility for your care is both shared and lifted from them.
So Nina, here's some advice, take your time, give them a chance and soon you will be part of the big family that LOROS clearly is. Not only that, but you'll feel proud of them and for yourself for giving them a chance to prove to you that life is yours still and that they will help you live it. So breathe, let them in and breathe again.
Yours sincerely,
New Nina





#panningforgold #pathways2resilience
#bcresiliencecentre #breastcancerawareness


Link to Nina's previous blog Ducks & Buddhists: