The sucker punch of a cancer diagnosis
Or, 'FFS, you're kidding me,' as my then 15-year old put it.
I wrote this blog in early January 2020, a year or so after finishing treatment for breast cancer. I was nudged into writing by Sara Liyanage from Ticking off breast cancer whose website and online community had been an invaluable place of support and reassurance while I was going through treatment.
I sit here now, more than three and a half years after writing it and I’ve left the content as untouched as possible.
Diagnosis six months after moving from one end of the country to the other
The years leading up to my breast cancer diagnosis were tough. We had relocated twice (Bath to Bournemouth in 2014 and Bournemouth to Ilkley in 2017). My parents and grandma died in 2015 in a four month period. My sister was also diagnosed with breast cancer in September 2014, finishing treatment only a week before mum died.
It’s fair to say my world had tilted on its axis several times over and I was already emotionally battered, but I did a good line in picking myself up and starting again.
Cancer diagnosis = sucker punch
That said, being diagnosed with breast cancer just six months after moving to Ilkley was a real sucker punch. We were living in rented accommodation, our belongings split between our home in Bournemouth (that we were trying to sell), a storage unit in Skipton and the rental property, including many unopened boxes in the garage. The prospect of processing the diagnosis and starting chemotherapy whilst trying to move house and ensuring the children were as settled and well looked after as possible was a challenge.
That both mine and my husbands’ families lived several hundred miles away added another layer of complexity to an already difficult situation. The load, in reality, fell to my husband. He looked after me and the children, pushed through a house move which finally happened about halfway through chemotherapy. The completion date the subject of intense negotiations and ultimately solved by our removal man who was moving us and our vendors and acted as a go-between. All because we only had a few days in between chemo rounds when I was feeling ok, to actually physically move.
He was also juggling a demanding day job too, the reason we were now living in Yorkshire.
The kindness of strangers
In Ilkley I had started to get to know people and make friends. I’d joined a book club and Pilates class and Ilkley is an incredibly friendly, welcoming and supportive community. It’s one of the things that hits you pretty quickly when you spend anytime in the town.
A few days after my diagnosis I remember bumping into a friend on a dog walk and after the initial hugs and kind words, she told me not to worry about asking for help, that support would just arrive. And she was right. Offers of practical help like lifts to hospital, food parcels left on the doorstep, meeting for a coffee or a walk, bunches of flowers. They all started arriving thick and fast. And that for me sums up Ilkley, it might seem trite but one of the silver linings in all of this has been getting to know a pretty formidable bunch of people who took me, a relative stranger, into their midst and just unquestioningly offered their friendship.
But if the reaction of friends in Ilkley was you’ve only just moved here, this is horrendous. The reaction of friends who’d known me for longer was more like my eldest son’s response, ’FFS, are you kidding me.’ (he was 14 when I was diagnosed, his brother 12 and their sister just 8).
Old friends
I sent a WhatsApp message to a group of close friends when I was ready to go public with my news. Within seconds, my phone pinged and rang. The response from this core group of friends who’d known me from school, university, London, Bath and Bournemouth was everything I needed it to be. What followed was a steady stream of messages, calls checking in on me.
One friend wangled a business trip to Harrogate so that she could see me — dinner in The Ivy brasserie after hours spent in hospital having a MRI scan — yes please thank you very much. Another sent a tray of brownies and kept me going with lovely WhatsApp exchanges, including a WhatsApp conversation during Harry and Megan’s wedding which was perfect timing coming a week after my first round of chemo. I’d had some pretty horrendous side effects and had been feeling pretty grotty so this was the distraction I needed.
These were friends I’d known a long time but maybe we’d got out of the habit of regular phone calls, let alone visits, relying instead on texts or social media to keep in touch.
At that early stage after diagnosis, but before treatment really got going, I felt I had all the support I needed but I had no idea how I was going to cope either physically, mentally or emotionally weeks and months further down the line.
Cancer — it’s complicated
I could feel though that the deeper I got into treatment the more complicated my feelings became. I was fatigued emotionally, mentally and physically on top of managing the side effects of treatment. The physical fatigue was easier to manage in a way because I already had a kit bag of coping techniques having had ME. I was used to pacing myself and being clear with my family when I needed to go to bed and rest.
I also think I was lucky because I was able to manage my side effects pretty well and I kept reasonably active. I only had two rounds of chemo delayed due to low blood cell count and I didn’t pick up any infections. Other than recovering badly after the general anaesthetic following my first operation, surgery was straightforward. I also emerged from radiotherapy without any physical complaints. I do think I was lucky.
Just tell me where I need to be and when
But the pressure of mental and emotional fatigue intensified and I just stored it up until after treatment finished. I think that’s the thing, whilst I was in active treatment, I felt I didn’t really have an option. I had to turn up to my appointments, I had to have the scans, the treatment. I just had to do it and if that meant blocking stuff out or answering concerned questions with a reflexive ‘I’m fine’ or if pushed ‘I’m just a little tired’ then so be it.
I think up until about halfway through my chemotherapy my sister was my go-to person for cancer talk but one September morning, sat waiting for my weekly PICC line check I met a mum from school. She’d been diagnosed in the summer and was due to start treatment. We’d be introduced once before in the school playground and she recognised me in the waiting room.
I know that I got a huge amount of reassurance and support just from knowing there was someone locally I could meet for coffee and talk quite openly about treatment and side effects. Someone who just got it. We had a similar approach to getting through chemotherapy and what was to follow. And we were both regulars at the same coffee shop in Ilkley, which became our regular meeting point.
Walk in my shoes
I think, and I am wary of saying this out loud, but, until you have sat in the chair and been told by the doctor that you have cancer, you really won’t get it. I thought that with my mum and sister having cancer that I was pretty tuned in. I was wrong. Being diagnosed with cancer is so complicated, so it isn’t surprising that I started to turn to people going through or who’d had the same experience.
It’s not to say that supporting a close friend or family member through treatment doesn’t give you an insight or that you can’t empathise. But, as with experiencing the death of a much loved one, it’s hard to put yourself in that situation until you’ve actually lived it yourself.
And so I turned to people with the same experience, and asides from my new local friend and the odd support group, much of this support came online through social media.
Our digital world = shared experiences and connections
I wouldn’t be sat here writing this blog if it weren’t for ‘meeting’ Sara from Ticking off breast cancer on Instagram. I wouldn’t have met Barbara from Return to Wellness or found the Mission Remission website. And I do think this is where our connected world really comes into its own. Being able to read an Instagram post and have a ‘Oh yes, me too’ moment when you’re feeling low or isolated was hugely reassuring.
I could dip in and out whenever I wanted. I didn’t feel I had to commit to attending a group and feel guilty if I didn’t feel up to it. Though I did pop along to a couple of cancer support groups, which were great. But truthfully, social media and WhatsApp played a huge part in enabling me to keep in touch with people hundreds of miles away and feel less isolated and more supported.
Showing vulnerability
I was wary of posting on my Facebook and Instagram feeds about my diagnosis. It felt very exposing which in turn made me feel vulnerable. I was also wary of feeling like I was attention seeking, but a conversation with a friend reassured me that friends and family would want to know how I was doing. I don’t generally use social media as a confessional but the wave of love I received after the occasional post was overwhelming. In a good way. It triggered private messages from old school friends I hadn’t seen in decades, friends from Bath. Bournemouth. It was lovely. It genuinely made a difference.
The mental and emotional load not only on me but on my husband and the children was and to a certain extent, still is much, much harder to manage. I think the further we got into treatment the more we got stuck into survival mode as a family. And when we hit that point it was hard to lift our heads up and ask for help because, I don’t think we knew how to explain what we needed or how anyone could help other than practical offers of food and meeting for coffee.
Long distance family
I think the role of the friend inevitably takes on greater significance when your family isn’t around. There were many times where I just wanted to be able to pick up the phone and talk to mum. Or to just see my sisters but it just wasn’t possible. Before we moved to Yorkshire a day trip to visit either of our families was always possible, even when we moved to Bournemouth. But moving up to Yorkshire turned that day trip into a much bigger performance involving long car journeys or trains and hotels. During treatment my parents in law came up from Bristol, one sister from Cardiff, the other sister from Somerset and my brother, who lives in Tokyo visited too.
These were fantastic boosts for us all. It meant the children were taken out, had different people to talk to, a change of conversation and meals cooked for them. It gave us all a brief respite because when your life is ruled by hospital appointments, it’s hard to get away and sometimes all we need is a change in scenery and conversation.
Rock bottom #1
I had some really low points at different stages of my treatment. The first came at the halfway stage with chemotherapy which coincided with the school summer holidays. Lots of people were away and we were stuck here fielding the children out to various family members in an attempt to give them a break. Me in the knowledge that although I was halfway through chemo I still had another three rounds of chemotherapy ahead of me - plus surgery and radiotherapy. It felt like a mountain to climb. Chemotherapy is such a visible part of treatment what with the hair loss and all, that it’s sometimes hard to see that the other elements are equally hard, just in a different way.
A downward spiral
My lumpectomy for example, was a really miserable experience in hospital and probably marked the start of the downward spiral. The nursing care was non existent and I struggled to recover from the general anaesthetic. I became convinced that I wouldn’t ever be clear of cancer, that surgery would show that it had spread to my lymph nodes.
I felt that based on the previous few years it was just my lot in life. So, when my surgeon gave me the results and told me I’d need another operation because they didn’t get ‘clear margins’, I just shrugged my shoulders and nodded. Because I wasn’t surprised.
It was probably at this point where I really started to miss some of my more established friendships including and probably most importantly, my family. The people who could read me, know when I needed a boost, a kick up the backside, or just a listening ear and cup of tea. And while local friends were genuinely fantastic, it was expecting far too much of people who barely knew me, to step into that role especially as so many had already gone above and beyond the call of duty.
A cup of coffee and side of honesty?Â
But there were times when, meeting friends for coffee I would brace myself and think right, the next time someone asks me how I am, I’m going to tell them. And then you meet up, you’re told how well you’re looking and the moment, the glimmer of an opening is gone. Because where do you begin to even find the right words? It is so nuanced. So complex. So, layered with different emotions. And actually, when you have cancer it’s so lovely to chat about something else, someone else when you do get out.
I think the reality is that for me, I knew the best way for me to get through treatment was to take one day at a time (one of mum’s often repeated pieces of advice — finally I was taking it) and just tick off each appointment, scan, blast of radiotherapy or round of chemotherapy. I knew myself well enough to know that at some point I would need to mentally and emotionally engage with and process it all but during treatment, I just had to get to the end. In one piece if possible.After my parents died, I had grief therapy and regular reflexology and reiki. This combination of talking and hands on therapy helped me reach a place of balance and calm. I found and am still finding it hard to find that same balance and calm after breast cancer. It took quite a few months of dancing round the edges and just ploughing on before I hit a brick wall and needed to just stop.
To go back to basics and prioritise self-care. For me, that meant dog walks on the moor, baking, reading and just hunkering down and giving my brain and body a chance to stop and process things. And it was at this point that I started getting involved in more online conversations about breast cancer and which has led me to write this blog.
Truth be told, I’ve written thousands of words. I’ve earned a living writing for other people, mostly in the business world and other than learning about reflective writing as part of an NCT course a few years ago, I’m really not used to writing about myself. I’m hopeful that this will the first of many articles.
One year on (January 2020)
And here I am today, a year and a week after finishing treatment. Physically I’m in pretty good shape despite Tamoxifen’s best efforts, and I’m back working. But my mental and emotional health is less robust, less stable. It needs attention and TLC.
I had my first post treatment mammogram on New Year’s Eve (the previous New Year’s Eve was spent having radiotherapy but I’m hoping that a hospital visit doesn’t become a New Year’s Eve thing) which was swiftly followed by my one year anniversary of completing treatment. All of which combined with Christmas and New Year has meant far more days of feeling stuck and low than I would want.
So I took myself off to the new Maggie’s Centre in Leeds for a chat and to see what support was on offer. It’s a lovely space to just be and while I was there I signed up for their ‘Where now’ course. I’m viewing this as a first step in getting my mental and emotional health on more of an even keel.
There’s no summary here to neatly round up what I’ve written about and experienced. Cancer is difficult. It’s messy, lots of big emotions and whilst you can put it in a box and ignore it for a while, once you start facing it, engaging with what’s happened. Well, it’s not easy but that’s ok.
I’ve been heeding my mum’s advice of one day at a time for many years now and it’s become even more relevant and important during this period of my life.
April 2018: Diagnosed with ductal invasive oestrogen positive breast cancer (Aged 46)
May 2018: Six rounds of chemotherapy (Epirubicin Cyclophosphamide)
October 2018: Lumpectomy
November 2018: Bilateral shave to get clear margins
December 2019: Begin 20 rounds of radiotherapy and began taking Tamoxifen