Day 18 #pathways2resilience ~ Nina

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:

http://bcresiliencecentre.blogspot.co.uk/2016/03/ducks-and-buddhists-nina.html

Day 17 #pathways2resilience ~ Uzma

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

Don’t Ask Me To ‘Get Over’ My History With Breast Cancer

In today's post for our month long feature #pathways2resilience, we are delighted and honoured to share Uzma Yunus' blog post about the challenges of living with cancer and its effects. Uzma is a mother, physician and psychiatrist whose writing resonates across the world:

"Many survivors end up having clinical depression, anxiety and even post-traumatic stress disorder. The battle with cancer continues for a survivor despite cancer being gone from their bodies. The fear of cancer lingers over most survivors and then about thirty percent like me have to deal with recurrence and start of the treatments all over again. For us with metastatic breast cancer, it is never over at all. Our fears just get bigger and scarier."

Link to blog:

http://www.huffingtonpost.com/entry/breast-cancer-dont-ask-us-to-get-over-it_us_57f18712e4b07f20daa10e51

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 16 #pathways2resilience ~ Jan

From Fear to Resilience - Living with Breast Cancer and its Effects ~ Jan

Learning to live with Metastatic Breast Cancer...

That elated feeling filled with excitement, when you can’t wait to re-build your ‘life’ after breast cancer treatment. It doesn’t last long for some, like Jan, whose cancer metastasised in a course of a year after she finished chemotherapy. Misdiagnosed for a cyst, she insisted on further scans to sadly reveal that her primary breast cancer was now in her spine, liver, lungs and brain. Her lovely family blessing her with support, but the loneliness singing loud. A death sentence now has left her with two choices: to give up or to continue being bold, beautiful, and live life to the full, and fund raise for her beautiful family so that they would not die of cancer.

Jan has chosen to be resilient and versatile, in the dark cloud of adversity that can cover her thoughts, her heart and her vision. We are delighted that Jan has submitted a new blog, 'Learning to live with Metastatic Breast Cancer' for our month long feature #pathways2resilience

According to what she describes, acceptance in the face of uncertainty helps her be resilient, flexible, and diverse.
So proud to share Jan’s story with you. She is an icon of resilience and the soul and heart of our group.

Well where do I start? I suppose at the beginning…….

From the age of 45 I was backwards and forwards to doctors with lumps in my breasts, every time I went, I was referred to breast clinic who did all necessary tests - fybrostic breast, small cysts. They would drain cysts and send me home.

I had this one lump in my left breast that never really went. I used to lie awake worrying about it. I had only had it checked out in November 2014 and was told it was a cyst. Come February 2015, it was still there so I decided I wanted the lump cut out so went back to the breast clinic again.

I had arranged to meet my sister after clinic to go for lunch and make a day out with our husbands...little did I know what devastating news I would get that would change my life forever.

I remember the doctor doing the scan and telling me “Mrs Syers this is not a cyst”. "Of course it is. I only had it checked November." " I'm really sorry," she said. OMG. I thought I was dreaming, stuck in a nightmare and I would wake up... I felt like I was looking over me and it was someone else ... "Are you saying it’s cancer?" I said.  "Well, we will know more after mammogram but yes it's a big possibility.” Omg, OMG, omg. In the next 10 minutes everything was a blur. I planned my funeral, what people would say about me. I was physically shaking. My husband and sister were crying. I told them I'll be okay. From then on it was different tests, from one room to another, to one doctor to another. After all tests, I was given appointment for the week after. That was the hardest and longest week ever. I never slept or ate. Dr Google was huge part of my life, made me feel worse ...

Results day ........."Well Mrs Syers you have what we call triple negative breast cancer. You won't be needing any of them expensive nasty drugs when treatment is finished." Wow! I looked at my husband and we both hugged. “That's really good news ...” How wrong can one be? Dr Google told me all about TNBC.

Only 5/10% of Breast cancer is TNBC. It is the most aggressive breast cancer. The survival rate is rubbish, chances of it returning in the first 5 years is very high.

So my journey begins - surgery lumpectomy and sentinel lymph node which means only lymph node near cancer is taken. Week later went for results - really good news clear margins and no sign of cancer in lymph nodes. Yayyyyyy! Some good news! 

My chemo started EC /paclitaxel.

Wow what a journey that was - from being a lively, high living woman to becoming a bald ‘sick’ all-the-time-no-eye-lashes-freak. Well that's how I felt. I spent so much time crying and thinking the worst. Dr Google became a huge part of my life. I joined all the forums not realising that this was making my anxiety 100 times worse.

I remember my back hurting in the middle of the night like my skin was just so sore to touch. I got up and looked in the mirror and saw a mole. I thought, OMG I've got skin cancer. So at 3am in the morning, I'm taking pictures of my mole (very difficult as was on my back) then on to Dr Google looking at pics to see if my mole was cancerous. Well in my head, you have guessed it - I had skin cancer. I spent the night on the couch, crying, my stomach in knots feeling sick and lonely. How mad is that no one really understands unless you have cancer ... Loneliness is a huge part of having cancer. A few days later the pain went and I got over the mole being cancerous. This happened lots through my chemo. My mind was always working overtime. I can't begin to tell you how many places the cancer had spread to, such a depressing time. My poor family. I had them all drove mad. I really don't know how they coped with me. But they did and I'm blessed to have such a fab support network – a wonderful husband who never moans, children who love me and friends in abundance. Without them all I wouldn't be here today.

Being self-employed, I had to work through chemo which I think helped me took my mind of my ailments.

Yayyyyyy chemo finishes. I get to ring the bell - what a fab feeling that was. It’s all over. Only radiotherapy now - 28 sessions. This will be a walk in the park to chemo. Well I got that wrong. I really struggled, everyday lying on that bed exposed from the waist upwards. Different nurse every day, young students, male too, just walking in like I was just a piece of meat. Lying on a slab, my arm aching as I had to hold it above my head, my skin burnt terrible big brown patches. The tiredness was unreal. The loneliness again. I felt so alone.

This one day I was in radiotherapy, just leaving, and I bumped into a customer of mine who had TNBC. Her treatment had finished 8 months ago. I thought ‘what's she doing here?’ We sat and had a coffee and I couldn't believe what she told me. The cancer was back - it was in her lungs and chest wall. I was devastated for her, life was so unfair, 8 months that's no time. It brought it all home that this could be me soon. I cried all the way home. I decided no matter what, that I was going to be there for her, friends told me to step back, that she would bring me down. I thought OMG, No! That could be me one day, and the thought of being deserted because I had metastatic breast cancer. This is when you need support more than ever. So I was going to be there for her no matter how hard it got.

Well, all treatment was over. I should have been happy but I wasn't and I couldn't understand why. I actually felt worse and hit rock bottom. I felt deserted - all the care I had had was gone and I was on my own. I thought I can't carry on like this. I need to get some help.  There is help there, you just have to ask. I threw myself back into work and tried to get my old life back. Very hard, as you still are suffering side effects from the vile chemo which can go on for years.

Well, here I am cancer free. Great! At Christmas hair had started growing back. Booked Tenerife for January. 18 of us, all family went. My dad subsidised it for us all as we had had such a tough year. My dad is also terminal with prostate cancer. So the holiday was to make memories and it sure did. We had the best time ever.

I started getting pains in my back when I returned from holiday but I just put it down to chemo and the after affects from it all.

The pain just got worse, so I pushed for a scan, but the surgeon opted for bone scan which came back clear. Tried to send me home and get on with my life but when you have pain that’s all you can think about. So once again, I pushed and pushed for scan. I felt like a hypochondriac, middering for scans but I'm so glad I did. The results were not what I wanted to hear - 2 tumours on my spine. From then on it was test after test My results came back, not good news. Mets - liver, bone, lungs and brain.

I was devastated. I had just been given a death sentence, omg I was really going to die of cancer ....

I was to have chemo again but I'd do anything to stay alive longer. Family were devastated lots of crying ...

As time went on chemo started, and so did sickness to the point that I was given a driver with sickness meds and pain killers. This helped loads. I felt rotten. I am struggling this time with chemo my bloods are never right. I've had a blood transfusion which I felt great after as I was so tired sleeping all day.

This time round having metastatic breast cancer I find I'm coping better than when I was first diagnosed ... I don't know whether it's acceptance I've got it and there's nothing I can do but live with it. I can't change it. Wish I could it is what it is and it's now part of me till I die, sad to say. I'm doing my best. I have terrible days where the big black cloud comes and I can spend the whole day crying. I try not to think about dying and concentrate on living. Which is hard sometimes when my body is tired and achy all the time. My face is puffy - I call it steroid face, the way I look affects me as I always take pride in my appearance, it's just harder now to get make up right. I just spend longer on it - lol. I also sleep so much, one minute I'm full of life the next doesn't matter where I am. I need to sleep. And sleep I do, sometimes all day.

I am trying to do nice things and make memories with my family. I try to talk with them about me dying but they don't want to know, so it falls on deaf ears. I suppose it's understandable - who wants to talk about their mum dying? I'm writing letters to them all, hopefully keep them out of trouble - I'll be watching them. Now I'm upset I don't want ever to leave them.

Well it takes us today were am I now. I'm happy, believe it or not cancer is not going to destroy me. It’s taken my health, my independence [driving] I can no longer drive and my car is a massive part of my life. But we have lots of drivers so they all do their bit, mostly husband he's amazing. I'm so lucky there.

Life is for living and I intend to live it to the full when I can, enjoy my family and friends who are a very important part of my life.

I will keep on with my fundraising and hopefully leave my legacy that my children and grandchildren won't die of cancer.

I am strong, brave, beautiful. Just like all my fellow pink ladies. I have to believe this to go on xxxxx

#pathways2resilience #bcresiliencecentre
#panningforgold #breastcancerawareness

Day 15 #pathways2resilience ~ Amanda

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

'My dining room became my art room. And I had started to fill the gaping hole that cancer had ripped into my life.'

We were thrilled to share Mad Little Artist's work earlier this year. She's an amazingly talented artist and we were honoured that she agreed to appear as our very first art feature in Panning for Gold.

In her blog post, Amanda shares how she taught herself to create art following a diagnosis of secondary breast cancer.

Do take a moment to enjoy Amanda's new artwork below and read Amanda's story here: http://bcresiliencecentre.blogspot.co.uk/2016/03/i-am-now-an-artist-with-cancer-amanda-hayler.html

Find more of Amanda's work at:
FaceBook https://www.facebook.com/madlittleartist/

Instagram https://www.instagram.com/mad_little_artist/

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 14 #pathways2resilience ~ Janet

Day 14 #pathways2resilience ~ Janet

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

Not one, not two, and not three, but four; Multiple recurrence and breast cancer metastasis: And Cancer, Yes, I’m still standing.

Around 30% of women with a primary diagnosis of breast cancer go on to develop metastatic breast cancer. You would think that the treatment first round would have killed the nasty cancer cells, once and for all. But no, they can hide, and raise their ugly heads, not once, but multiple times, after every treatment, and won’t give up, until they cripple you. Metastatic breast cancer is incurable, and not talked about, yet its reality is very much alive. Thousands of women, like Janet, continue to live prosperous lives, and as such should not be written off, despite the ignorance they receive.

Read Janet’s most moving story. Your heart will go out to her, not JUST because of what she has endured over and over again, but how she has risen from it, not once, but multiple times.

Hi, I'm Janet, a 65 year old wife, mum of four and grandmother of eight, one of whom is a heaven grandchild. One of my daughters was born with a rare congenital heart defect therefore I was also her carer for 42 years until we lost her last year.

My breast cancer "journey" began in 2010 when following a routine mammogram I was diagnosed with DCIS middle grade, left breast, no lymph node involvement. I had two lumpectomies as the first didn't have clearance, and 15 rounds of radiotherapy. Then:

2012: recurrence...invasive ductal carcinoma, grade II
2013: small stroke
2014: recurrence…invasive ductal carcinoma, grade III
2015: stage IV/secondary/metastatic breast cancer in bones 2015: death of my daughter
2016: further spread to left lung and left axilla lymph nodes, HER2 neg, ER+ PR-

Whilst feeling very low one day and feeling very sorry for myself I decided to write to the beast!!! Here's my letter I would like to share with you.

Dear Cancer,

You invaded my body for the first time in 2010 and tricked me into believing that it would just be my one and only brush with breast cancer as it was DCIS grade II, no lymph node involvement, so no chemotherapy, just radiotherapy and 2 lumpectomies. I recovered well, returned to work, and continued with my life, never believing for one moment you would ever return.

It's 2012 and the night before my yearly scheduled mammogram, so I thought I'd have a quick check and to my horror I had a lump, I felt my face burn, my heart went into my mouth, I couldn't swallow, I felt sheer terror, it was on the scar line. Next morning I had my mammogram and told them about the lump, so I had to go directly for a biopsy and ultrasound, but I knew you were back, you had crept up on me without any warning. You put me through hell, this time it was grade II invasive ductal carcinoma and this time you robbed me of my womanhood, my self-esteem, my image and self-confidence. I lost my left breast and couldn't even have a reconstruction due to complications. You introduced me to paralysing fear, panic attacks, and turned me into a crumbling negative shadow of myself, suffering side effects of the wretched hormone medication. I had to leave my job and my whole world collapsed around me. I still had to nurse and care for my sick daughter and I think that was what gave me the strength and determination to pick myself up and carry on and fight you, you weren't going to have me!!!

In 2013 I had a small stroke, thankfully I recovered fully, and guess I can't blame you for that but I would if I could.

Well peace reigned for a while and I had amazing counselling that helped me beat you again. It's June 2014, still suffering from image problems and my darling husband used to check my breastless chest area, as I still couldn't bear to look at myself, or touch my flat ugly chest. I saw his face go pale and his eyes fill with tears, he said "oh no, not again, this is so wrong, so unfair, there's a lump”. You evil beast, you just couldn't leave me alone could you? Back to hospital for a barrage of tests, this time further recurrence grade III. Well I was so angry, I didn't even cry and I stayed awake through the surgery and watched them cut you out to see you gone. There were clear margins and I was to continue on hormone medication and carry on. You were NOT going to get me.

It's 2015 now and my daughter is now so sick and she was sadly taken from me peacefully in April at the age of 42, in my arms, at home as she wished surrounded by her family. Then I shouted out loud at you, "OK are you finished with me now? How much more can a person cope with? Now go away and leave me alone".

I tried to pick up the pieces but it was too hard and sunk into deep depression. During this time I felt very unwell and had terrible back pain, which doctors attributed to stress and grief. In October I visited my hospital for another reason and spoke with my Macmillan nurse and asked if I could have a scan to put my mind at rest. The nuclear scan was done and it was first thought to be degeneration…getting old, I laughed.

I then got the call “I'm so sorry you have secondary metastatic breast cancer in your bones”. You broke our hearts cancer. I've never seen my poor husband cry so much, “It's not fair, why you again?” he said. We are numb, incurable, incurable, incurable, that was all we could hear. I would be planning my funeral, doing my Will, sorting out all my affairs. You did this to me cancer, you had won!!! Well NO, to hell with you, I've got cancer, but you haven't got me…not yet. I'm on Denosumab (bone strengthening) injections, exemestane hormone therapy, adcal supplements and pain medication and so far bone mets are stable mable. You also took me away from my primary friends, nurses and support network in a bright sunny waiting area upstairs, instead to be moved down to lower ground floor away from the potential survivors, pink ribbons, lots of information and masses of support.

Nowhere in the sunny department is there any information or literature about secondaries or recurrences, it's as if we have moved over to the dark side, hidden away, we are the failures, we didn't get remission or a cure, we are incurable, we might frighten the other ladies as they don't want to think about the reality that this could happen to them. But it can and does to anyone, cancer you just don't care, you have no conscience and take no prisoners, rich, poor, famous, anyone. BUT cancer we will make people aware of you, we will be counted by the hospitals and authorities, we may not win the war but we will win as many battles as we can. We will fight back. I know I will lose to you one day but not without a fight.

I have an amazing team looking after me now which includes my Secondary Breast Cancer Nurse Specialist, Tracy Acock. Not only does Tracy greatly help me with my care, she also fights for awareness for all those living with secondary breast cancer. I just wish we were in the sunshine as well as it can be an achingly lonely place to be. You have been with me for 6 years and 7 months so far and as wonderful as people are to us they can tire of you, evil cancer. You wear people out and we have to put our lippy on and smile and say "I'm fine"…if only.

Well 2016 here we go again, it's in my left lung and axilla lymph node, albeit small. I refused to cry when they told me, I refuse to give in to you, yes I have days I cry, cry a lot, days I feel low, days of terrible pain, mood swings, but as far as I'm concerned you can keep snapping at my heels but I'll just run faster, not that I can run anymore…OK walk faster.

Cancer I hate you, I detest you, you are a silent monster who has invaded my body, my life and my world. I don't take you for granted, you are always there sitting on my shoulder but you ain't got me yet!!!!

Janet

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

Day 13 #pathways2resilience ~ Secondary/Metastatic Awareness

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

Are You Ready to Start Talking About Secondary Breast Cancer?

Today, October 13th, is Secondary Breast Cancer Awareness Day, one solitary day out of a month-long Pinktober - it’s the not-so-pink lining which we women with primary breast cancer can hardly bear to face.

Here in the UK around 12,000 women die as a result of secondary breast cancer every year. These women are mothers, sisters, daughters, friends and partners.

Around 30% of women with primary breast cancer go on to develop secondary breast cancer - breast cancer which has spread to other parts of the body through the lymphatic or blood system. You might hear it described as ‘advanced breast cancer’, ‘metastatic’, or stage 4 breast cancer. You might also hear about so-and-so who had breast cancer and then developed liver cancer. This is inaccurate - breast cancer that has spread to the liver is not the same as liver cancer.

At the Research Centre for Building Psychological Resilience, we hear from our friends living with secondary breast cancer about how isolating and marginalised they feel in the breast cancer community and over the next few days, we'll be sharing some of their experiences highlighting the way in which they continue living rich and meaningful lives.

We desperately need to know why it is that some women find out that their cancer has returned, despite extensive treatment, despite having been told they were ‘all clear. If we can be brave, and stop hiding from our fears, we can start talking. If we can start talking, not only can we support one another, we can advocate, and we can press for better and more effective treatments.

We will not be featuring any one person today for our #pathways2resilience project, instead we wish to share a blog by our deputies, Tamsin and Vicky, published earlier this year on HuffPost UK. We dedicate this post to those who have died from secondary breast cancer and the thousands who continue to live with the worry and uncertainty of their condition every single day. #DontIgnoreStageIV

Please read the blog ‘We Need to Talk about Secondary Breast Cancer’ here: http://m.huffpost.com/uk/entry/10247000?utm_hp_ref=uk-women

You can also find further information and support below.

Secondary Breast Cancer Charities:  
http://www.secondhope.co.uk/

http://www.secondary1st.org.uk/

Breast Cancer Care:

#NotSecondRate campaign

https://www.breastcancercare.org.uk/secondary

#panningforgold #pathways2resilience

#bcresiliencecentre #breastcancerawareness

#SBCAD #DontIgnoreStageIV

Weekly Discussion Summary ~ How to Live with Cancer

Autumn has well and truly arrived and the longer evenings offer the chance for greater reflection. In this week's discussion, we explored 'how to live' with cancer and the effects of cancer.

Our discussion was inclusive of primary and secondary breast cancer, we are very aware of the different implications of each diagnosis, but also how important it is to learn about secondary breast cancer and consider it on a continuum to primary breast cancer.

We take our vulnerability forward, whether we are trying to move on after treatment for primary breast cancer, trying to come to terms with the limitations that face us as a result of our treatment, or when cancer returns and we are on continuous treatment. This was an opportunity to talk to one another about our concerns and the fears that affect us all, and to learn from one another.

#ResilienceDiscussion