Saturday, 10 March 2018

Lola was my best friend in 2017. She went with me everywhere and gave me confidence to step out into the world as me. Lola was good like that. Whenever I didn’t feel quite myself Lola would be there to help out. I became so attached to Lola that she was hard to leave. Eventually, I had to be brave and go it alone but I will never forget Lola and how much she meant to me. Lola was the wig that I wore during chemotherapy.

Age 48 and I was diagnosed with grade 2, stage 3, hormone positive, breast cancer on the first day of Spring 2017, two months after a car accident which left me with a very nasty whiplash injury. How much more can life throw at me, I thought. I remember those three words bouncing around my head like a pinball machine: “you have cancer“. It was like being psychologically hit by a truck. But wait, there must be a mistake, other people get cancer don’t they? I’m just not a cancer type. I eat well, exercise, don’t smoke, don’t eat meat, don’t have any family history. I’m ticking all of the non-cancer boxes. The daffodils were in full bloom and it seemed wrong to receive such an ugly diagnosis on such a beautiful day. I obsessed over the daffodils, wondering if I would ever see them bloom again.

I am a 1 in 7 statistic.

Breast cancer doesn’t care who it picks.

I went on an online forum for support. Some people had smaller tumours but no, not me, I had to go big. I had a monster tumour. I remember the letter arriving through the post to confirm my diagnosis. I hid it in my coat as it was too scary to show anyone. It had ugly or unfamiliar words in it like “ER positive”, “HER2 negative”, “invasive”, “locally advanced”, “ductal carcinoma”, “diffuse”, “inoperable”, “lymph node metastases”. I was pretty sure no one would want to see that; it was hard enough looking at it myself. I spent the next three weeks walking around in some sort of denial daze, attending appointments and being put through various white machines: CT, MRI… I just pretended I was on the set of Dr Who and that helped me to cope with it all (the MRI machine does sound rather like a dalek). This was a tough time and the anxiety made me feel quite ill with chest pains which I was convinced were lung metastases and I was going to die. Thankfully, despite its ugliness, it hadn’t spread to any distant site. There was a shimmer of hope to control it locally. You don’t realise how important that word is until you really need it; “hope”. Such a simple little word but it gives you something to cling onto when your world is crumbling and you can’t do anything to stop it. I started to realise that my conscious self was just a tenant in a body which had let me down, like a woodworm infested house, but I couldn’t move out, I was stuck with it. I didn’t like the burden which I was about to put onto my loved ones so I told them all by telephone so I didn’t have to see their faces as I broke the news. I was really brave over the phone. I even convinced myself I was strong and as it happens, I was strong.

Here is some useful information to help with telling loved ones or very young children  and here is information for anyone concerned with implications for fertility.

The NHS medical staff were all fantastic and I could never thank them enough. I presented with symptoms of Inflammatory Breast Cancer (IBC) the most rare and one of the most aggressive sub-types. Thankfully, chemotherapy reversed these symptoms. I got through 8 rounds of chemotherapy over 6 months followed by surgery four weeks later and then 15 sessions of radiotherapy (over the Christmas period whilst suffering a cold virus!) and this treatment programme became known as “the breast cancer triathlon”. When I was first given my treatment plan, I remember thinking “I have to survive 8 rounds of chemo and still be well enough for major surgery?”  This is like a really bad joke and it’s not even funny. Visualisations started to enter my head.  I felt like I was trapped in a building which was on fire and I had to jump into a safety net or I was on an aeroplane with engine failure and the crew had announced a crash landing. There was no going back. What I was experiencing here was a leap of faith to the medical team. My life was in their hands and my diary was being managed with appointments. I no longer had control over my own life.

In the UK, as soon as you are diagnosed, you are protected under The Disability Discrimination Act 1995 and this protection still applies if you’ve had cancer in the past:

Here is the best UK website for information and support on breast cancer:

You can chat with others in the breast cancer community here:

McMillan offer excellent information on Finances, Work and Travel after a cancer diagnosis:

Here is the NHS guide on what to expect from your diagnosis and treatment plan:

I’ve noticed people with cancer swear….a lot!  It’s the frustration and despair.  So trust me that whilst I do not swear on my blog, I am swearing in my head as I write it.  I also observed that some people want to read as little as possible whereas others want to read EVERYTHING.  If you are the “everything” kind of reader, like myself, then make sure you apply due diligence and avoid scare stories which are not based on fact.  Google for healthy things that help you rather than scaring yourself.  Bear in mind statistics are based on treatments given 10 years ago which have now improved so there are no statistics really.  **We are the statistics** and our statistics will also be out of date in 10 years after further improvements in awareness, diagnosis and treatment…  The gap here for me, to improve my personal statistic after treatment, is about minimising risk through lifestyle and diet.    With a cancer diagnosis you also become vulnerable to believing in “miracle” cures.  Cancer Research UK offer a nice summary of how to sensecheck your source information:

20/03/2018 –  One year on
One year on since diagnosis, my cancerversary, and I am now considered a breast cancer survivor.  Believing this is the hardest part.  Once you’ve had cancer it’s hard to stop feeling like a cancer patient and its hard to stop thinking about cancer but I engage in active living now and have a greater awareness of what it means to be alive.  This is a precious gift; the new perspective born out of a life threatening situation.  I am fearless now.  Once your own body has tried to kill you from the inside there is little left to fear on the outside, that’s all external.

……… and guess what…….I saw the daffodils bloom again and I intend to next year too! My story continues ………. Follow the links on the menu to follow my journey and how I coped with chemotherapy, surgery, radiotherapy, delayed reconstruction and more…..

……and you can also find me tweeting away @lifeafterlola

Check out my “Thoughtful Bugs” art collection: available on Etsy as greeting cards and post cards

The Thoughtful Bugs book is available on Amazon in paperback:

An artistic, personal account of Nikki’s mental health journey after a cancer diagnosis. “Our thoughts can feel like bugs whizzing around in our heads but if we observe them mindfully, perhaps we can start to make sense of them”.

Each design shows the photographic inspiration, artwork and perspective.

From Mayhem to Mindfulness, one bug at a time.

Check out my podcast interview with Helena from 100 Stories where I discuss life after cancer quite candidly:

Disclaimer: I am not a medical professional. I do not claim that anything which worked for me would work the same for you. This blog is no substitute for the advice of your doctor. Always seek medical advice if you have any concerns. Always check with your consultant before taking any supplements. This blog is my personal journey and a journal of how I coped. I do not take any financial incentives from any products mentioned. I do not personally represent any charities mentioned.

#breastcancer #breastcancersucks #breastcancerawareness #ifhbc #yestolife
#cancersurvivor #pinkribbon