Tag Archives: breast cancer

Feeling at home in my body

Is one of the reasons I’ve struggled to feel at home – not just here in Yorkshire but from my twenties onwards – because I haven’t felt at home in my body and in myself?

Sun rays on the left of the image over lush green moorland and a deep blue Spring sky

H.O.M.E.

Home. This short word, these four little letters have occupied a lot of headspace these past few weeks following my last post and various conversations, especially with Lindsay Johnstone who writes What Now? and other writers on her Memoir in a Month course. (I’d highly recommend it, she’s running another in September if you’re interested).

There’s been a lot of scrapbook writing. Odd thoughts tapped into Notes on my phone as I walk into town, sentences half heartedly strung together in my notebook and the occasional flick through the photo album.

There’s also been a lot of not-writing writing. The writing that happens while washing up and doing all the other life stuff like making parent’s evening appointments and picking up yet more milk from Tesco.

I try to capture these fleeting thoughts and ideas, but the longer I leave it between posts the harder it is to pull them together into something that makes sense. I made a commitment to myself and to you though, to write regularly. Or rather to share my writing regularly so that’s what I’ll do. I’ll put on my writing playlist, sit down with a cup of tea and see where the writing takes me. Bear with…

Feeling at home in my body

Later this afternoon I’ll be driving along the A65 to Airedale Hospital for my annual mammogram. Six years post-diagnosis, five year after finishing treatment my scanxiety, that knot in my stomach, tends to surface around halfway through the drive to the hospital rather than in the days before as it used to.

It appears somewhere between Addingham and Silsden but disappears the closer I get to Aldi, distracted as I work out if I have time to pop in before my appointment and have a rummage through the special aisles, or not. Stopping at Aldi and picking up flowers and brioche (not to mention cushions and candles) was as much part of my cancer routine as the weekly PICC line flushes, blood tests and scans.

The mammogram appointment letter arrived a few weeks ago, around the same time I found out I could stop taking Tamoxifen, a friend was diagnosed with breast cancer, bumping into a woman I’d met in the chemo lounge years earlier but not seen since, and Mother’s Day.

Mother’s Day, the ninth since mum died, passed in a blur of grey sky and rain. I’d been silently congratulating myself on feeling fine about it even though I’d been surrounded by Mother’s Day cards and gifts at work. I was surprised then to feel so wonky on the day, much as I had last year.

Spring is a strange season. I mean it’s very welcome with its blossom, lighter afternoons and lush foliage and all those signs of regeneration and growth but it’s also the season of mum’s death, as well as my annual mammogram which brings memories of my diagnosis to the fore all juxtaposed with the joy of childrens’ and Andy’s birthdays.

The final fraying thread connecting me to cancer

The thing with being told I could stop taking Tamoxifen is that it was the final, fraying thread tying me to breast cancer. A little over five years of daily pill taking. It had plunged me into chemical menopause overnight, the last line of defence in the treatment plan for my oestrogen positive, ductal invasive breast cancer. I thought five years of pill popping might call for more than the brief text message.

“Hi Mrs Mason
The specialist advised a 5 year course for your Tamoxifen
so this can now be stopped.”

I called the breast cancer nurse who confirmed the text was correct. I asked if I could expect any side effects as I had when I first started taking it, ‘Oh, I don’t know’ she said, and our conversation was over.

And so I found myself in tears in front of the GP the other Friday afternoon. I’d made the appointment after feeling some pelvic pain in the days after I stopped taking Tamoxifen. Discomfort and pain that disappeared as the appointment got closer and I came close to cancelling because I wasn’t ill, was I.

I didn’t want to use up an appointment for no good reason but I also felt that there needed to be, or rather I needed some sort of conversation with a human being to acknowledge that treatment had finished, that I was done.

I didn’t ring the bell in the chemotherapy or radiotherapy waiting rooms after my final appointments. A bell was too loud, too public. The clanging of metal on metal too harsh, and it didn’t feel like anything was over. I guess it wasn’t over, not only because I was on Tamoxifen but also because there’s something insidious about cancer. It can stay with you long after the hospital appointments disappear from your diary.

I guess it’s also worth adding that I’d also spent the morning before seeing the GP with the recently diagnosed friend and was surprised at how emotional I felt as I drove away from her.

Do you talk about it?

The GP was fabulous, she listened, passed me tissues and gently asked if I ever talked about my breast cancer. I paused, and realised that no, I don’t think I do talk about it. Much like I don’t often talk about how I miss mum. I don’t think I mentioned her at all on Mother’s Day which seems really odd now that I see it written down.

With the cancer, I might reference it, as in this thing happened but that six years post diagnosis I didn’t think I had a right to talk about it anymore. I was fine, wasn’t I? Time to move on and continue the forward facing position I’d adopted.

I apologised for using up the GP’s time and told her that I almost cancelled. She put me straight and we agreed that I was probably overdue a return visit to Maggie’s cancer centre for a chat.

I think I hesitated in answering the GP’s question about whether I talk about cancer because I recognise this habit I have of talking and writing a lot of words but not necessarily sharing how I feel.

Or at least only wanting to share feelings that are somehow appropriate and acceptable.

I also hesitated in writing this post because I don’t want to sound like I’m moaning. I know I’m six years down the line, that my cancer was common and with good outcomes and I’m still here, fit and healthy.

I’d also been persuading myself that I should be writing about ‘home’ after my last post, but I’ve found it hard to string my thoughts together into anything that makes sense. I think I also came to the realisation that it’s all connected anyway.

Feeling at home in your body

I suspect that one of the reasons I’ve struggled to feel at home – not just in Yorkshire now I think about it – but from my twenties onwards is because I haven’t felt at home in my body, or in myself. From shingles and post viral illnesses to ME/chronic fatigue and fibromyalgia and cancer. The signs have been there, the body knows the score indeed, it’s just that I haven’t been listening properly.

Because how can you feel at home, knit and weave yourself into a landscape and community if you don’t know yourself. If you aren’t paying attention, listening, acknowledging what’s really going on inside?

And I guess as I’ve hinted at here, it’s not just the cancer. It’s what came before it. Stripping out and naming the emotions linked to each individual event is hard, impossible even and while for the most part I walk through life happy, content even there are times when I feel its weight creep up on me.

I get out daily, and take my vitamin D. I walk on the moor and go to Pilates, stretching my body at home too. I love the jolts of energy and colour that working my shifts at Oliver Bonas brings as well as writing for my clients not to mention chats with friends and family, but that can all be true whilst still feeling the heaviness.

We need safe spaces to explore our complicated emotions

I hope that what I’m creating here in Gently Does It is a safe space not just for me to share and explore these themes and feelings, but for you too. I loved reading the comments following the last post and I guess it shows that many of us are walking around harbouring these conflicting and sometimes confusing emotions.

I’ve included a few of the articles, books and podcasts I’ve found useful over the past few weeks as I’ve been thinking about feeling at home in my body (and anywhere else for that matter). I hope you find something interesting and/or helpful there too.

And with that I’ll leave you in peace. Thank you for reading, the comments are always open and I’ll be here reading and ready to reply. If you’re not a Substack-er simply hit reply to the email and message me directly.

Harriet

Something to read

Nervous system regulation isn’t everything, All Parts by Eliza Butler on Substack

“Trauma leads to disorganization in the various systems of the body, which causes the body to work even harder to find any semblance of coherence. For some who have experienced trauma, you might feel like an entire section of your orchestra has betrayed you and left the building; another person might feel like a few instruments are out of pitch. Either way, our bodies learn how to play the music the best we can given our situation.”

I’m longing to return to the place we used to live but is this still nostalgia? Annalisa Barbieri in The Guardian

“Nowhere is perfect. Is it really the old place you’re longing for, or just the fear of permanence where you currently live?”

On moving: a writer’s meditation on new houses, old haunts and finding home again, Louise de Salvo

“In the moves I imagine myself making, I’m always in a perfect place. A house that doesn’t leak during heavy rains. One with no musty smells in the basement. One without walls that crack and need repair. A home without a filthy oven that needs cleaning. A place where there will be no health problems, no marital problems, no financial woes, no income tax, no work that feels banal and boring.’“

Louise de Salvo, On Moving: a writer’s meditation on new houses, old haunts and finding home again

Something to listen to

What does it mean to belong? Conversations with Annalisa Barbieri featuring psychotherapist Mark Vahrmeyer

“We also look at how important attachment is in determining how much we feel we belong, or don’t. How self esteem also impacts and how very important human connection is to psychologically tether us to a sense of belonging. We also look at why you might feel you don’t belong in the very place you think you might have an automatic right to – your own family.”

Reflection: Julia Bradbury documentary ‘Breast cancer and me’

Leave a Reply

Sitting with my husband on the sofa last night and deciding to watch Julia Bradbury’s ‘Breast cancer and me’ documentary felt like a calculated risk. It’s almost four years to the day since I was diagnosed and honestly, sometimes I just don’t want to go back there. I know that’s my defence mechanism at play. Protect. Protect. Protect.

But sometimes, there’s a little chink in my armour and with Andy’s nod of the head we started watching.

It was emotional. I admire Julia’s honesty in opening up to the camera at such a vulnerable time in her life. There were beautiful, poignant moments like the conversations with her parents and children. I admired the way she approached telling her young children, balancing her natural instinct to protect them with honest conversations that didn’t hide what was happening. It’s a balancing act I aimed for with my own children, but I’m not sure I succeeded.

She was so open about her surgery, the markings on her body ahead of her mastectomy, the conversations with her medical team and her sister’s tears while waiting for her outside the consulting room. Seeing her children after surgery. Brave in so many ways.

I have a habit of brushing off my cancer. It’s in the past and I’m ok now, aren’t I? Survivor’s guilt I guess. But watching the documentary reminded me how dark those nine months of treatment really were and how complex and long the recovery period can be.

Recovery. I’m not sure I know what that actually means. All I know is that it’s every bit as hard as the nine months of chemo, surgery and radiotherapy. My body is pretty good at healing, the head and heart less so.

We paused the documentary a couple of times, once because I was struck at how open Julia was about being frightened. That wasn’t a word or emotion I could ever admit to at the time, even though my words and actions were showing that I was indeed, frightened. That was a moment for me and one that I finally felt able to admit out loud, something I wouldn’t have done had I not been watching the documentary.

I think watching with Andy also gave us a route into talking about a period we are comfortable acknowledging but often don’t take the time to talk about in any great depth. Day to day life tends to get in the way. So it gave us the chance to reflect and think yes, that resonates. Or no, that wasn’t our experience at all.

On any other Thursday I might have switched over, not feeling safe or strong enough to go there, to confront those emotions, but I’m glad I did.

I didn’t want to write about breast cancer

Leave a Reply

I didn’t want to write about cancer, but the more I write, the more this story roots itself in those nine long months from diagnosis in April 2018 to that final blast of radiotherapy in January 2019.

The thing that frustrates me is that breast cancer always seems to overshadow the grief. The turbulence of redundancy and relocation. Buying and selling homes. Our lives in boxes spread across storage units, garages and rentals. All the other crap.

There it is again I think, hogging the headlines. I want to scream and shout, ‘There was all this other crap too, you know.’ Mum and dad forgotten, eclipsed by this tumour in my right breast. Even now four years on from diagnosis day.

I want to write about the grief of losing mum and dad four months apart in 2015. I want to write about how utterly dislocating it was grieving in a place – Bournemouth – that dad never visited. Mum only a couple of times. A place, beautiful as it is that had no personal connection to the people I was grieving.

I want to write about how bloody hard it is to make friends when you feel like you’re going mad with grief. And the people you’d normally turn to for support – your own family – are grieving too, trying to figure out their lives, their challenges, trying to work out what new family looks and feels like now that its foundations have disappeared.

But no. Breast cancer is jumping up and down in front of me, waving its arms, trying to get my attention.

So maybe that’s the deal right now. As a first attempt at writing a book maybe I do go with the less difficult option. On a purely practical level it’s a lot easier writing about something that happened recently. I mean I have a stack of WhatsApp messages, paperwork, photos and social media to help me piece it together for a start.

And it’s not like I can talk about having breast cancer and not talk about my family. My brother in Tokyo. My sister swapping central London for rural Somerset. My other sister meeting and marrying her husband, bringing their lives together and moving to a new home. None of us living in the same place we did before mum and dad died. Everything had changed.

And God, I want to talk about those ridiculously long phone conversations I used to have with mum. ‘Just a quick thing Harriet.’ An hour later and we’d still be talking. And we’d do the same again the next day.

But I think I need to accept that for now, this is what I need to write about. That trying to starve breast cancer of the oxygen it craves I’m making it worse. Sometimes I wonder if I’m minimising the experience. It wasn’t so bad, was it? Not compared to losing mum and dad. I mean, I’m still here, aren’t I? I survived.

So that’s the plan as I head into this weekend. I have a very immediate and specific final task to complete for the Write a memoir course. The opening 3000 words of my book. Wish me luck.

Thank you for reading,

Harriet

So, have you lost any weight?

Leave a Reply

I was momentarily stumped. Not a new feeling with my Tamoxifen addled brain but even so. I was talking to my hairdresser and just told her about running couch to 5km. After the congratulations, she asked me if I’d lost weight.

It was a perfectly polite question and well intentioned. But I was thrown because it just hadn’t occurred to me when I started running that I was doing it to lose weight.

But it got me thinking, why did I start running?
I think if I’m honest there are a few different reasons. Having finished treatment for breast cancer I had been focusing on getting fit again, improving my strength and stamina. There’s nothing like cancer treatment, steroids, hair loss and the rest to leave you questioning whether the person you see in the mirror is really you.

But the other reason I started running was because I was feeling left out. You see since I moved to Ilkley two years ago, I’ve become friends with a group of women who think nothing of running for miles across the moor to go to a hot yoga class. Or mountain biking down down the moor, going to a multitude of exercise classes from Pilates to HIIT and everything in between.

In short — Ilkley is an active town where people, because of the location next to the moor and the Dales within striking distance, want to be on the move, whether that’s on wheels or two feet.

It’s infectious. And despite having not enjoyed brilliant health over the last few years (that would be ME diagnosis in 2012 and then breast cancer in 2018) I’d got to the point where my dog walks were getting longer with more hill climbs and I wanted to challenge myself.

So fast forward past diagnosis and the end of treatment, I found myself in that post-treatment no-mans land. I’d got through the six rounds of chemotherapy, two operations and 20 rounds of radiotherapy and started taking Tamoxifen. All I needed to do was put myself back together. Easy, right?

Baby steps
I’ve long been a believer in making several small changes rather than one huge change that can be harder to start, let alone stick to. So a little idea lodged in my mind. First I gave myself time to get back up to the fitness levels I had before I was diagnosed — daily dog walking duty on the moor and weekly Pilates classes. But I started increasing the length of my walks, taking steeper paths, getting my heart and legs pumping.

And then one day I downloaded the Couch to 5km app, I chose Jo Whiley as my running coach and off I went. I’m incredibly lucky to live a stone’s throw from Ilkley Moor and my goal initially was to run on the moor, but I started small with laps of the tarn, the large pond inhabited by ducks that is a few minutes (warm up) walk from my front door and acts as one of the gateways onto the moor. It was the best of both worlds — I was close to the moor but the path was slightly more even.

Off I’d shuffle, earphones falling out, clutching a water bottle. And I’d walk, then run, then walk again at the prescribed intervals, following Jo’s instructions. It was late Spring, heading into Summer and I figured that if I started then, by the time we hit autumn and the weather started deteriorating, I’d have already created the habit of running.

So, if I didn’t do this to lose weight, what did I get out of it?
A clear head. Emotional and mental clarity — both in short supply for quite a few years. That is the single, biggest, most important side effect of running. I can’t think of anything else I do that leaves me with such a clear head.

Taking Tamoxifen and being plunged straight into the menopause had brought its own challenges — disturbed sleep, achy joints, hot flushes and an erratic digestive system. Moving more and running specifically became the key to feeling human again. To feeling lighter, less anxious. Or it gave me an outlet when the anxiety crept up. I began to breathe easily again.

Almost 18 months after starting to run, I am still running. It’s more sporadic than when I first set out. The Yorkshire winter doesn’t help, neither has a change in daily routine. But I ran 25 miles in December 2020 to raise funds for Maggie’s Cancer Centres, who helped put me back together again emotionally after finishing treatment. My overall fitness levels are much improved and it’s given me a bounce in my step, a confidence I didn’t have before.

And did I lose weight?
I have no idea. I never weigh myself! Being weighed for every hospital appointment during treatment was pretty soul destroying so no, I don’t weigh myself. I don’t even own any bathroom scales.

Physically I felt stronger, and yes my shape changed slightly, but the real difference was the emotional and mental clarity that running gave me. A clear head.

Thanks for reading, Harriet

Maggie’s Cancer Centre
Couch to 5km

The sucker punch of a cancer diagnosis

Leave a Reply

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, a year or so after writing it and while I’ve done a quick tidy up, I have left the content as untouched as possible.

Diagnosis six months after relocating from Bournemouth to Ilkley
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.

New friends
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.

You just have to turn up
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.

Being vulnerable online
I was very 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.

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.

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?
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.

Because where do you begin to even find the right words? It is so nuanced. So complex. So, layered with different emotions.

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

Navigating life after breast cancer

Leave a Reply

It’s Friday 2nd October 2020 and I sit here, in my kitchen writing this blog just as breast cancer awareness month kicks off. This time two years ago I’d just finished my six rounds of chemo and was having a pause before surgery and radiotherapy. I’d been diagnosed with ductal invasive breast cancer in April 2018. Looking back, I now realise that this marked a period where I started the slide from coping to just about functioning.

Because although I completed treatment January 2019, it took another year before I really started allowing myself to get to grips with what had happened. A big part of me finding peace and balance after a truly tumultuous few years was Maggie’s Cancer Centre, and the Where Now course for people who have finished cancer treatment.

Finding my voice, sharing my story

Professionally I help people to find their voice and share their story. And writing this is my way of writing my story. But that implies I know what the story is, but I don’t really. I mean I know the key events, but I’ve never really written the story, and writing here is part of that process.

I worry that it feels egotistical to think that people will be interested in what I have to say. But it’s cathartic and I know how I’ve benefitted from hearing others talk about their life experiences so maybe I can pass that on and help someone else – you?

Being diagnosed with breast cancer

I was diagnosed with ductal invasive breast cancer in April 2018, around six months after relocating to Yorkshire from Bournemouth. I spent nine months having treatment at Airedale Hospital (chemotherapy and surgery) and at the Bexley Wing at St James’ hospital in Leeds (radiotherapy).

Keep on keeping on

I’d adopted a ‘one foot in front of the other’ approach to treatment, lurching from one appointment, scan or treatment to another. It worked up to a point. But I was very aware that I was struggling to keep going. I made it through chemotherapy but began to really struggle after surgery.

I felt physically, mentally and emotionally battered and I knew that I would need support at some point but, felt like I wasn’t ready to start down that road until I had finished treatment. And I still had radiotherapy to do.

It felt too raw and I needed all my energy to get to the end. And I also wanted to find the right place for me. A place that would look at me as a whole person, not just Harriet with cancer.

Band aids and brick walls

Once I’d finished treatment, I ended up sliding into work as a freelance copywriter. I love writing and I love my clients but looking back I took on too much too soon. I think I knew it at the time, but I got caught up in life post treatment. And I suspect I thought it might help me to feel more normal if I was working and being sociable. But I often ran into brick walls – emotionally and physically – and needed to take time out.

These breaks would involve hunkering down at home, long dog walks on the moor and just doing as little as possible. Like a band aid, these little breaks would last just a few days, but I’d then find myself struggling again. I was trying almost too hard to get myself back on my feet, but the foundations were too shaky for it to stick.

Breaking the cycle

I got through 2019 repeating this cycle, but by the end of the year was really struggling. And then Maggie’s in Leeds opened. I visited with Andy on the open day in December 2019, walking through the doors and promptly bursting into tears. I suspect it was the combination of this beautiful, calm space and the knowledge that finally there might be a people in the centre who could help me put myself back together again that set me off.

Even in the shadows of a multi storey hospital car park, Maggie’s is a peaceful and calm space. Open and airy but with quiet corners where you can sit and just be. In the context of brutal, invasive treatment like chemotherapy and surgery it might sound odd, but one aspect of treatment I found profoundly depressing were the hours and hours spent in windowless, airless waiting areas, sitting on uncomfortable chairs.

Chemo lounges full to bursting, squeezed into the corner while hooked up to my drip. Not knowing if the sun was shining or tipping down with rain. It made me feel so much more disconnected from normal life.

Finding a safe place to just ‘be’

Maggie’s was the breath of fresh air I needed. It immediately felt like the safe place I had been looking for. A place where I could finally relax, just be and start to open up and explore what had happened.

I got through Christmas and New Year 2019 but found myself increasingly tearful and wobbly. By this time, Maggie’s was open, and I headed to the centre not really knowing what I needed but knowing that help would be there. I was introduced to Amanda, the centre manager, who sat and chatted with me. She took me through the support on offer, including the Where Now programme. I hadn’t considered a support group, thinking that one to one help was what I needed, but I trusted that Amanda knew what she was talking about. And I signed up. It was the best thing I could have done.

Where now?

With some trepidation I arrived a few weeks later for the first of seven weekly ‘Where now’ sessions. I arrived feeling apprehensive, not really knowing what to expect or whether the three-hour group sessions would help, but it became clear very quickly that I was in very safe hands. Two professional and experienced facilitators (one a clinical psychologist, the other a specialist cancer nurse) guiding us and the support of a small group of people who’d also been on a similar path.

Each week we explored our cancer a different angle (from partnering with your medical team to healthy eating via managing post treatment changes). A personal trainer would take us through strength and conditioning exercises. And we would have time to just chat, always guided by Emma and Helen. Emma would close each session with a guided relaxation before we headed to the large table outside our meeting space for a group lunch.

The whole person

And that’s what I love about Maggie’s. It looks at the whole person, not just the cancer part of you. The support programme recognises the importance of human connection in helping us to understand ourselves and others. And there’s something so healing and human about sitting around a table and chatting while you share food.

I finished the seven-week ‘Where now’ course feeling calm, balanced and ready to head out into the world again. Just as we headed into lockdown. I am very thankful that I completed the Where now course before lockdown happened.

I know it helped me approach these uncertain times with a sense of balance and strength that had been missing up until that point. I was also lucky in that I didn’t have to shield and that I live in a place where my daily exercise took me up onto Ilkley Moor and all its big sky and fresh air.

What now?

I feel lighter, balanced and more grounded and I gained a fantastic support group. Despite living in different corners of this part of Yorkshire, we regularly keep in touch via WhatsApp (what else). And I love the ‘Where Now’ notebook, especially the recipes. The oatmeal biscuits (known as Maggie’s cookies in this house) are a family favourite while the rest of the notebook is full of prompts, thoughts and ideas.

This well-thumbed notebook sits in the kitchen where we all flick through it. A gentle reminder of what we’ve been through, how far we’ve come and the support that has got me to this point.

Although the course had come to an end, I started having regular one to one conversations with Emma, which proved to be incredibly useful. They gave me the chance to explore, reflect and reframe situations, building on the discussions we had in our group. I went back to the centre at the end of July for the first time since Where Now and Covid 19 – and I did it without crying. Which shows how far I’ve come.

I cannot praise Maggie’s Leeds and the ‘Where Now’ programme enough. Cancer is a hideous disease with a brutal treatment regime that changes you. The Maggie’s Cancer Centres and the people that work and volunteer in them do an extraordinary job of putting us back together.

Thank you for reading,

Harriet

So, what happened?

Leave a Reply

What happened? What were the events from 2012 – 2019 that led me to writing here? I’ve had a go weaving it all into this one blog, but it’s quite hard because there’s a lot of ground to cover. So, here goes…..

I was chatting with a well-being coach yesterday. A lovely woman I knew years ago, first personally, then when our paths crossed professionally.

But we hadn’t spoken for a good few decades, and while she knew that I’d had breast cancer, as we began talking, or rather I began talking, I realised I’d need to list the stuff. All the things – or rather the headlines – of the 2012 – 2019 years. The years I think about whenever I think about this life writing malarkey. Which is quite a lot at the moment.

Once I’d got through the timeline and the conversation opened up, we talked briefly about why I’m writing. She observed that I’d smoothly talked about each event, one after the other, one year after another. A little commentary or explanation thrown in but speaking quite quickly. Rushing my words. Wanting to get it over. Conscious that as I spoke about one event, the next one was already lining up to be brought into the conversation.

So, while a big part of writing about this period in my life is to have a version – my version – of the story down on paper. I also want to move beyond the ‘what’. I want to use the reflective practice that’s been lodged in my brain since I first heard about in around 2011 to explore the ‘so what’ and crucially, ‘now what’.

But to do that, I need to actually write down the ‘what’. I’ve done this in bits and pieces over the years, but I don’t think I’ve ever written the timeline down. So, I figured that’s what I’d do, beginning in autumn 2012.

Autumn 2012: chronic fatigue and redundancy

We’re living in Bath, and I pick up a virus during the October half term, but I don’t recover. Chronic fatigue hits and I spend increasing amount of time sleeping, barely leaving my bedroom, let alone the house.

A few months into this and I’m diagnosed with ME/fibromyalgia. Around the same time Andy is made redundant and he juggles job hunting with looking after the children aged three, seven and nine, while I retreat from life.

January 2013: the lost year, Bournemouth, barely-functioning and mum’s cancer

Andy gets a job, which is great, but it’s in Bournemouth and our family life changes overnight. He leaves us on a Monday morning and drives to Bournemouth, living and working there til Friday afternoon when he comes home.

I’m at home trying to function, keeping the children fed and watered, getting them to school and nursery with the help of family and friends.

2013 is really the lost year. I can’t remember a huge amount about it other than I was barely functioning. And any functioning I was doing was thanks largely to friends, relatives and neighbours regularly feeding the children, having them round to play, adding them to their school run and generally stepping into in loco parentis mode.

Running alongside this – and this is where my memory is sketchy – is that mum’s cancer takes hold. She’d had a mole removed from her leg a few years earlier and had been under the care of a consultant ever since.

At some point in 2013 they discovered that the cancer had spread and was moving around her body in her lymphatic system.

She had surgery to remove lymph nodes and we shifted into new territory. She’d have an appointment with her consultant. I’d speak to her afterwards. I’d speak to my sister who went with her to the appointments and then I’d speak to my other sister and my brother, each conversation helping me to piece it all together.

There was a lot of talking and listening.

Alongside this, dad was needing increasing amounts of care at home, after having had a rocky period of ill health himself. TIAs, ongoing heart problems. He’d occasionally spend time in a care home, to give mum a break, respite. He went to a day centre, had a friend who’d take him to a weekly lunch club but by the end of the year, the situation was getting precarious as mum became less able to be his main carer.

As I sit here writing this, I’m incredibly aware that I really can’t remember anything about that year. Particularly around mum’s cancer. Or dad.

Spring 2014: cancer spreads, a friendship breakdown and a relocation to the seaside

We get to Easter, after a very low start to the year, and I take myself down to Bournemouth with the dog, the children safely stowed at my in-laws. I walk Bella along the prom, a beautiful sunny, blue sky, classic Spring autumn morning in Bournemouth. I sit to have a cup of tea, overlooking the sea and wonder why we’re breaking ourselves – Andy in Bournemouth, us in Bath. Barely functioning, no family life.

We decide in the space of a few days to relocate and move down to Bournemouth so that we can be together and live by the sea. It takes a few months to sell our house, find a new home and sort school places for the children but by autumn we’re back together under one roof, 5-minutes walk from the beach.

Mum has more surgery to remove more lymph nodes to try and keep the cancer at bay.

A significant friendship breaks down. There’s a lot of anger. It’s incredibly upsetting, and I can’t find a way through. It still haunts me. Less so these days, but it’s still a significant event in my adult life and this is the first time I’ve mentioned it in any of my writing.

Autumn 2014: breast cancer, a house move and mum starts to fade

My sister is diagnosed with breast cancer, and the conversations about mum’s cancer intensify. And it all feels very vague. I don’t really have a clear hold on her illness, what happened and when. It feels a lot like it crept up on us, by stealth. Silent.

Christmas 2014: grey and bleak end to the year

Christmas in Bournemouth, but the mood inside the house matches the uncharacteristic grey sky outside. My sister, post-surgery, part way through chemotherapy visits with her two daughters. My other sister comes to stay with mum. I think dad was in the care home and I don’t remember where Matthew was. This was the point where mum started fading. She was sleeping loads and had been on immunotherapy but was struggling with the side effects.

May 2015: Mum dies

August 2015: Grandma (mum’s mum) dies

September 2015: Dad dies

I can’t say anything else at this stage about 2015. Let’s just leave it there, with those three deaths. It’s a year I will return to.

2016: finding peace and getting back on my feet

This year was all about getting back on my feet. I started volunteering at my daughter’s primary school, reading with the children in reception. I became a reading coach for adults and by the end of the year had a job working as a part-time special educational needs teaching assistant.

This was against a backdrop of my brother relocating to Japan. My eldest sister, who had met her now husband just months before mum died, married him. Happy news.

Spring 2017: redundancy and saying goodbye to the sea

Andy is made redundant and starts job hunting. There is little in and around or commutable from Bournemouth and he ends up taking a short-term contract, working with an old contact and friend up in Yorkshire.

He drives up on a Sunday, works til Thursday and comes home. Not ideal for the long term and we decide to relocate to Yorkshire.

Bonkers? Maybe. But I don’t think we could see any other option at the time. Our eldest was heading into Y10 and GCSE territory, our middle child in Y8 and our youngest in primary. We either made the move there and then, or we spent two years living apart while the eldest completed his GCSEs. We decided to move.

September 2017: move to Yorkshire

We move into a rental in Ilkley and start house hunting. The rental isn’t a great set up for us, and our belongings are spread across packing boxes in Yorkshire – in storage and in the rental garage, as well as in our Bournemouth home. We try to settle the children into their new schools. It has its challenges.

Spring 2018: breast cancer

In April, I find a lump in my right breast and I’m diagnosed with ductal-invasive breast cancer. I start nine months of treatment: chemotherapy, surgery (twice) and twenty rounds of radiotherapy.

We also, eventually, sort out the house situation, and move into our now home in the July, partway through chemotherapy.

2019: another lost year

I start the year by finishing cancer treatment and slide into work. The work grows but I’m increasingly hitting the buffer: physically, emotionally and mentally. Overwhelmed with everything. Not just the cancer, but the relocation, the deaths, everything. Missing mum.

Andy is also made redundant and starts job hunting – again.

January 2020: new job and Maggie’s to the rescue

I limp through to 2020 and visit Maggie’s Cancer Centre starting the post-cancer ‘Where now’ course which finishes shortly before Covid strikes. Andy begins a new job in Manchester.

Honestly, this is the bare bones. As I jotted down each year and the headline events, I was aware of questions and emotions bubbling up. Some to the surface, that I haven’t included here but will noodle over the coming days.

I’ve written this off the cuff, not over thinking it. Just seeing what pops up. I’m certain that when or if my siblings or husband read it, they will have different recollections. But sitting here, right now, thinking back to those years. These are the events as I remember them.

Thanks for reading,

Harriet