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