My urge to write has been less powerful since all the drama subsided. Back then, it was all about getting events down, making sense of what was happening in the minute, hour, day.

Now there’s less intensity.

Everyday life returns.

Hair grows.

Everyone is obsessed with the hair, including me. I love it when people clap their hands in delight or even give it a tousle: your hair. it’s so lush, so thick, so CURLY.

Yes, those chemo curls continue to give Rizzo/Bon Jovi/John McEnroe energy. At least I’ve moved on from my Edwina Currie Era.

It’s fun to take the compliments, and it is the most obvious outward sign of where I’ve been and where I am now. Plus, thick hair suggests health in a way I didn’t really understand before. The natural assumption is that no one with a barnet and bushy brows like mine could still be poorly (in fact, the other day, the nurse at the chemo ward thought my hair was a wig!).

Progress checks

But how much has the hair grown? In the interests of science, I just plucked out a strand from the area of my scalp which went almost bald. It took some serious pulling: the root didn’t want to let go.

I have my ruler ready… but you’ll have to wait till the end of the post to discover the number. It’s a suspense author’s trick, you know.

Beyond my scalp, I’m getting there. The main thing is that, as far as I know, I don’t currently have cancer. I previously shared the matter-of-fact ‘no evidence of disease’ wording doctors use for those of us who’ve hit the treatment jackpot.

But it’s not the same as feeling well, exactly. The other day I met other cancer people and we laughed and commiserated about the multiple side effects you try to learn to live with: numb toes, hard boobs, joint pain, blah, blah, blah.

Cancer admin still takes up a lot of time, my little shop of pharmacy horrors now takes up an entire cabinet, and long-term steroids means I am as germy as a toddler. My poor old immune system currently doesn’t know my arse from my elbow (both have had interesting times).

Yet the good times are very good indeed: we’ve been able to travel, taking the old Fiesta and the lovely dog on a road trip to Spain, via castles and vineyards and sandy beaches.

This time last year I wasn’t sure we’d ever do this again. Hell, I wasn’t sure I’d ever leave Ward 2B alive.

Growing pains

Hair growth can be measured. But ‘growth’ after cancer, the mythical journey back to real life and newfound wisdom, is not nearly as linear.

I’ve had better gifts (notwithstanding those post chemo party-bags of crazily-named and multi-coloured pills).

But this experience changes you, and some change is positive.

I’m better at noticing small things: blackbirds singing, the smell of coffee, bittersweet chocolate melting on my tongue, the first dip in a cool swimming pool.

I’d say I’m more empathetic, or at least better-informed, about the nature of sickness.

The ambrosia of amnesia

I offer this as consolation for people in the thick of treatment right now. One year on, I can remember vividly that the experience felt apocalyptic. That no part of my body seemed unaffected.

But I swear I have no memory of the actual pain or discomfort.

Amnesia here is a protection, and a joyful one. I liked the idea of calling this amnesia ambrosia - a glorious, transcendent gift or sensory pleasure - so I decided to look up the word’s origin:

In ancient Greek mythology, ambrosia was the literal food or drink of the Olympian gods, translating as "immortality" (from the Greek word ambrotos, meaning "not mortal").

Perhaps the connection is more than word play: maybe amnesia allows us to go back to kidding ourselves we’ll live forever, because the reality is too scary to sit alongside on a daily basis.

Sure, the intellectual knowledge of how bad things become stays with me and I remember that often. And the relief I’m not there right now is huge.

The only memory that still feels visceral is when immunotherapy side effects stole my breath and I thought I’d die. But even that is fading, month by month.

Measure for Measure

Who knows whether cancer, that collection of fast-growing and unwanted cells, has made me a better person. Recovery has definitely made me a hairier one than this time last year.

Because the body keeps doing its thing, regardless of what we’re thinking, regretting, working through. That’s another thing that’s changed: I am pretty awestruck by all it does when we’re not paying attention.

Which brings me back to hair.

After wrestling the curl straight, I can reveal the length of the strand: 119 mm, or a whisker away from 12cm. So the growth speed is around a centimetre a month or a millimetre every three days (apparently, this is bang on average after chemo).

I still don’t have a clue how to measure my growth as a person. But the ruler makes other progress quantifiable.

I also, ahem, hoped it might reduce the risk of cancer.

Who knows? It still might have helped. There was no sign of the original tumour at diagnosis, so it is possible my immune system, turbo-charged by fasting, could have eliminated that, leaving only dodgy cells in my lymph node.

I’ll never know. But I do know that I feel better if I fast once or twice a week - not a complete fast, but significantly lower calories. I can eat whatever I fancy the rest of the time (see pizza above!) and I believe that giving my digestion a rest allows the body to do its cellular housekeeping - sweeping up and repairing badly behaving cells, killing off ones that have served their purpose, and maybe also nipping any malignant ones in the bud.

Fasting and rebuilding:

My recovery fast days look different to before - because I’m still prioritising protein to rebuild what chemo knocked out. So I am aiming for up to 800 calories rather than the 500-600 I used to eat. That still allows me to reach 40-50g of protein.

This runs counter to what one expert on fasting, Dr Valter Longo, recommends - his research suggests cutting back on protein during fasting really increases the benefits. Although his guidance for everyday diets generally isn’t far off at around 40-47g of protein for someone weighing around 130 pounds.

But for now I am making up my own rules… (and this is just for me, not medical advice for anyone else). Typically I’m having:

Breakfast around 11: Greek yogurt, frozen raspberries, ground flaxseed, a spoonful of overnight oats with grated apple, some probiotic powder (to help repopulate my gut microbiome with the good guys and gals)

Lunch around 1.30: a poached egg, a couple of heaped tablespoons organic baked beans (less sweet than standard), some kimchi, a small slice of seeded sourdough.

Dinner around 6: a small jacket potato, lots of cottage cheese, some rocket and tomato, a sprinkling of cheddar or a knob of butter. Or: a bean and veg soup, two corn thins with hummus, more salad.

Dessert: my sleep is still a bit dodgy at times and it can be worse if I'm peckish at bedtime. So I can have a smaller version of what I had for breakfast - yogurt, raspberries, flaxseed.

Can fasting help my joints recover?

The biggest remaining side effect from treatment is joint pain. For seven months, everyone thought my aches were down to muscle loss but I’m now certain they were caused by my old pal, immunotherapy. That’s the medication that turned my immune system up to boiling point. It's now an entire year since I stopped it early because of side effects but those three doses are still wreaking havoc.

In January I went on holiday for my birthday but swimming - supposedly the best exercise for rehab - made it worse. Knees, wrists, elbows, hips and heels were all protesting…

I pushed to be seen in hospital and they persuaded me to try the dreaded steroids again. Within 36 hours, my knees felt normal and the other pains subsided. Hooray!

That proved my hunch. The pain is focused in my entheses, where the tendons attach to the bone. I see them as a bit like the points where tent pegs anchor guy ropes in the ground. But steroids (are an emergency measure rather than a cure and now my joints are hurting all over again.

I had an MRI of hands and knees on Saturday (who knew they had to do each joint separately, with and without contrast? Took forever!). And today I was due to have a new infusion via drip of a ‘biologic’ which can reverse the effect of the immunotherapy, until it got cancelled when I was on the train!

I’m a bit over the disruption the continued pain causes to getting on with life now, but I can’t fault the care from the amazing Immunotherapy Toxicity Service. They are the bees’ knees at canulation…

Back to fasting - in theory, this might help calm my immune system down and every little helps. Keep your fingers crossed for me - I can’t cross mine right now. But that’s not all I want from 5:2…

Weighty thoughts and not much wisdom

The truth is, it’s also about weight. In hospital, it fell below 9 stone and I looked properly poorly. Since then, I’ve gained almost a stone, which makes me heavier than Before Cancer. And I don’t like it.

It’s frustrating that after all the drama of the last 14 months, I’m still not there with my body image. This collection of bones, organs, cells, skin and the rest has done a bloody amazing job carrying me through treatment. I’ve gained new appreciation for all its components, from forgotten nasal hairs to the bone marrow that helps produce new white blood cells.

I’m getting on, my friends. No one expects me to be pretty or have a Miss World figure. No one except me, that is.

Ah, so much for the wisdom of near-death experiences. We’re all a work-in-progress and some days there’s more progress than others…

Which brings me to my next topic:

The recovery gap

What’s really hit me in the months since I finished official cancer treatment in the autumn is how the support that’s available doesn’t seem to address everything we experience after serious illness.

As I’ve recognised before, medical staff are there to get you cancer/disease-free, or at least as symptom-free as possible. But when all the drugs and interventions stop, you’re often stuck in a loop of thinking:

• Will it come back?

• What the hell just happened and what does it mean?

• Who am I now because I don’t feel the same?

• How I get back to who I was - and do I even want to?

• Do I have to live with the pain and the physical changes this brought?

• Why does everyone in my life seem to expect me to be back to normal?

• AND WILL IT BLOODY COME BACK?

I have started going to the Macmillan Hope Programme, which brings together people who’ve recently completed treatment. The course itself focuses on tools I already use, like goal-setting, mindfulness and gratefulness diary. The real benefit so far has been sharing the shock we all feel, still, at the diagnosis and treatment. They gave us this card in Week 2 which I love (though I’m not quite sure how to Group Hug Myself):

I also do fitness classes organised by Active Outlook, a fantastic Sussex Cancer Fund initiative to help patients during and after treatment maintain their fitness. It’s in a glorious room overlooking the beach which takes my mind off the discomfort of dead-bugs (an exercise I didn’t know existed).

But I do feel the urge to use my experiences and writing skills to create something that helps me and others: a book, an audio download, maybe an online group. and that’s where you might come in…

Do you have a couple of minutes to complete my survey?

If you have experience of serious illness, either directly or indirectly, I’d love your help: I’ve put together a super quick and simple survey - your comments would be so useful.

And if someone you know is navigating cancer or has done, and might find the survey interesting, I'd really appreciate it if you could pass it on. That's how this research gets to the people it's actually for.

You can fill it in anonymously but if you’d like to know more, please do leave your email at the end so I can tell you more about what I develop and maybe ask you to be a guinea pig!

Fill in my quick survey

Thanks so much. I’ll post here what I find out. In the mean time, whether you’re fasting or feasting, have a brilliant March.

Treatment is all high drama: Life and death! Weird coloured drips! Glowing in the dark!

Recovery is... tedious. It’s the hangover after the big nights out (chemo, surgery, radiotherapy may not exactly count as a party but they certainly come with a sting in the tail). And like someone else’s hangover, it’s not that entertaining to hear about.

Yet right now, I am more passionate than ever about this often uncharted territory of life after ‘No evidence of disease.’

Because I’ve realised that coming back after cancer could be the most creative thing I’ve ever done…

But first, let’s look at my progress so far.

Hair update: It’s curly, it’s untameable, it’s growing. Much as I love curls on others, I don’t like them on me. But I am choosing to embrace ‘Rizzo from Grease’ energy (while I secretly try to comb it straight after washing).

Face update: The steroid moon-face is receding. I’m not quite what the in-crowd call ‘snatched’, but I have a chin again. And that strange fat on the back of my neck is also flattening out.

Body update: This is where my patience frays. I want to run, but my body only wants to walk. I’m doing my exercises, with help from the dog…

But my joints still hurt a lot. Even – especially – lying in bed. It feels like they’ve been filled with sticky toffee.

The Christmas card revelation

I hit a massive low just after posting here last time - but from that came a revelation that might just change my life.

Even with the heating on, I couldn’t get warm - the same hollowness I felt then blew through me again like a December gale. I was dreading Christmas.

But I did fancy doing something purposeful. So I got out a paintbrush and copied this YouTube tutorial for festive cards. Focusing on a slender trunk, slightly blobby leaves and a very wobbly star relaxed me utterly.

Afterwards, my inner critic told me to chuck them in the recycling, because they look like a small child painted them. You failed art, remember?

But actually, they were sweet, and very me, with the baubles in my favourite scarlet and gold. Those cards proved I am still here. So I posted them to friends and family.

The next night, hip pain woke me at 2am. As I waited for a paracetamol to take effect, I thought about my Christmas cards and how relaxing they’d been to make.

I remembered all the making I did during treatment: writing this blog, recording videos, embroidery, watercolours, sketching, inventing smoothie recipes, composing spectacularly bad poetry, starting a novel, even drawing on eyebrows or painting my nails.

Everything I did was instinctive, satisfying and not focused on the end result (apart from the nails: I am so much better at manicures now than before cancer).

The science behind our need to make & do

And I realised that right now, doing is more important than ever: because recovery is creative.

Making and doing - whether it’s a smoothie or a jigsaw or a diary like this - is something I was drawn to even in my lowest moments. I did embroidery attached to the oxygen tank when I couldn’t do anything else. I painted cards when the anniversary darkness descended. Right now, I’m about to box on a VR beachfront because my arm muscles feel like jelly.

What matters is the doing in the moment, because now is all we have.

It’s not woo-woo. The science behind this is both dazzling and something I think many of us know instinctively. When we create, we’re not just passing time. We’re rebuilding neural pathways.

By threading a needle or controlling a paintbrush, you’re helping repair the brain damage that treatment can cause. Hand-eye coordination activates areas damaged by ‘chemo brain’, encouraging new connections to form.

And when you’re absorbed in making something, the self-critical part of your brain - that voice saying you failed art, remember? - temporarily shuts up.

This state of transient hypofrontality is often known as flow, and it’s a gorgeous warm bath of feelgood hormones: dopamine for focus, endorphins for natural pain relief.

This can help anyone navigating illness, injury, or any life-altering shock that leaves you wondering who you are now and what comes next.

That doesn’t mean investing in a potter’s wheel or a home gym. I’m using what I have to hand: sometimes that’s tin cans as weights. Sometimes it’s messing with the filters on my phone to capture a mood.

Sometimes (especially in January) it’s putting protein-packed things on toast…

The biggest lesson here is that the ‘what’ doesn’t matter, so long as it’s fun, or satisfying, or challenges you slightly, in a good way.

So now I’m remembering this whenever I embark on a fresh set of squats, or come up with a new way to serve with cottage cheese1. I’m not just going through the motions. I am making and remaking myself every day.

Does this resonate with you? I’d love to hear your stories in the comments: What’s the oddest, smallest, or most surprising thing that has helped you through a rough patch?

Leave a comment

It’s a year since I learned I had cancer.

I have fragments rather than a coherent memory: A grey morning, with a Christmas gathering to look forward to in the evening. A trudge across the park. Overheating in the busy waiting area. A baby crying; its mother stoic. A Macmillan nurse gathering a heavy fan of pink booklets from the rack behind me for some unlucky soul.

Entering the consulting room to see that same nurse, that same fan of leaflets. The uncommunicative doctor who either can’t, or can’t be bothered, to answer my questions or look me in the eye. The side room with tissues and comfy chairs and the empathetic nurse confirming the multiple daunting tests she’s ordering and the likely challenges after that: a year of treatment including chemotherapy, radiotherapy, immunotherapy, probable mastectomy… oh, in the meantime, get a flu jab (if you can find one anywhere), get a covid jab, get a PICC line…

But I panic before the simplest blood test!

The trudge back across the park, the mist even lower, trying to process my new reality. Breast cancer. The most aggressive kind. Christmas is cancelled. I am a stat. And far, far poorlier than I actually feel ...

A year on from diagnosis

Here’s a little montage of images from the last 365 days.

Immediately after diagnosis, the treatment towered over me like a mountain I was in no way capable of climbing. All those ‘therapies’, chemo especially, terrified me and even with my life on hold for a year, there were no guarantees.

Yet here I am, 12 months later: alive and kicking (when my knees behave).

The time between initial diagnosis, and the PET, the MRI and the rest, was the most difficult.

I felt a terrible, cold hollowness, like standing in snow in the sub-zero foothills with no coat, no shoes and no supplies.

But I also remember how small kindnesses warmed me, not least the amazing phone conversation with the Macmillan nurse who talked me down from the peak of terror and told me I could do this.

Reaching the summit was more challenging than I could have guessed, yet simultaneously more doable than I feared. Other surprises: I’m more resilient than I realised. My immune system is a roaring mountain bear when poked. I can carry off a cold cap but steroids are my nemesis. The only thing that the terrific nurse got wrong was that I haven’t needed a mastectomy, so far at least.

I am bloody lucky.

The twinkly lights of December will always spark sadness as well as joy now. Not just from this: my dad died four years ago tomorrow. This year, I’m all about the parties but next December we might seek new traditions. Perhaps we’ll skip off somewhere hot. I hope there will be a next year: none of us can ever be sure.

But it certainly seems a lot more likely than it did this time twelve months ago. Thank you for coming up to the summit with me. Let’s take it gently, coming down.

And wherever you are, whatever you’re facing, whoever you’re missing, however you’re feeling, I’m sending health, resilience and happiness.

I'm wondering this today because it’s exactly 365 days since I saw the GP about The Lump. Although I did check my breasts most months, perhaps the endless stream of ribbon-related publicity the previous month made me extra-thorough in my November rummage.

Now the weather’s changing and the air smells of embers, I can’t not remember this time last Remembrance Day1.

I'd managed to get a last-minute teatime appointment at the GP surgery. A ceiling-mounted screen played a cartoon cautionary tale of a man who ignored his bowel screening test. I fretted about whether I was wearing a bra I could take off quickly, not wanting to waste even more of the doctor’s time. Because this was probably nothing, right?

That feeling reminded me of the embarrassed anger I sometimes experienced as a girl and young woman, if a male stranger overstepped boundaries or actively harassed me. Two tracks ran simultaneously in my head: the fear that something really was wrong, alongside the worry that I was misinterpreting or making a fuss over nothing.

In the examination room, the doctor was laid back - wrong place, wrong sort of lump, ‘it doesn’t feel like cancer.’ Still, he referred me to the breast clinic under the cancer pathway. And that’s when this last, challenging year began.

The start of something…

Except it began before that on some unknowable date. One summer’s morning, a dodgy cell started dividing like it had been soaked in Miracle-Gro. Or perhaps it was one wintry night that my hyperactive immune system saw off the primary tumour but missed a cell that escaped into my lymph node.

That day, though, it felt like it had come from nowhere. Fast. The lab would later say the tumour cells had an estimated proliferation score of very high/greater than 80%: Translation: it’s growing like the clappers. It would have made itself known eventually - maybe in a few more months? But by then, it could easily have spread through my body, making it much harder to treat.

Thankfully I'd taken notice when the messaging said to check under the arms as well as the breasts.

Ribbons and Bows

This year, of course, I saw pink ribbons everywhere. There are probably no more of them than in 2024 but that’s the frequency illusion for you.

Stella Duffy wrote powerfully about the pinking of October in 2017 and when she reposted it recently, I totally understood. She hates the memes, the comic references to tits/boobs, and the language of ‘cancer battles’ that are won or lost (I loathe that too).

Elsewhere I've read comments from recovered patients saying how the October onslaught reminds them of terrible times or suggests breast cancer is a candy-coated version of the big C.

The ribbons haven’t triggered me this year because cancer’s never not in the back of my mind. I also never thought treatment would be the medical version of girly afternoon watching Clueless.

I always knew it would be tough, though I don’t think I realised it would be this tough.

Pink ribbons are a brand and sometimes they're used cynically. But the symbol has also allowed us to talk more openly about this disease. And I'm pretty sure ribbons have helped to save lives.

The Good Ship Survivor

So here I am on the other side of my year in the pink, experiencing what many health professionals now call ‘survivorship.’ Another word that doesn’t quite work for me. It’s not as as annoying as the battle analogy but it’s not quite right either.

My own ship would most closely resemble the Mutiny on the Bounty right now. Still, at least I’m not a total wreck. I have been trying to come up with an alternative and the word that keeps popping up is aftermath. That doesn’t have quite the same plucky vibe. Any ideas?

Leave a comment

If November 11 2024 was the beginning, is this the end?

Two weeks ago I had a Zometa infusion, to strengthen my bones. The fascinating story behind the treatment is one of serendipity. The drug was originally given to breast cancer patients to correct any bone weakening that other treatments are known to cause. But when women who’d had the drips were followed up, they were less likely to have had a cancer recurrence. The infusion changes the structure of bone so it’s a less hospitable place for cancer cells to hide out.

So I was happy to have it and totally at home seeing familiar faces on the chemo unit and a cannula is No Big Deal now. But then routine bloods showed that my white cells were even lower than they were during full-on chemo, so my immunity was compromised.

A white cell curveball

That was probably caused by the treatment to fix problems caused by immunotherapy. Fortunately, by Wednesday, my white cells were fighting back, but that 48 hours between tipped me into panic mode again. I stayed in. Worried about colds. Worried about much worse things.

That’s how it’s going to be, for a while. Maybe forever. I’ve got more bloods this week, just in case the muscle weakness is another immunotherapy-itis. But I keep reminding myself that there’s No Evidence of Disease (the closest doctors come to saying all clear).

Meanwhile, I’m still pondering what to do with a year’s worth of learning about cancer. There’s so much out there already in the way of books and documentaries already. Which reminds me…

Book recommendation for anyone newly diagnosed

The one book I wish I’d had this time last year is Hayley Gullen’s wonderful This Might Surprise You - an honest, funny, deeply human graphic memoir documenting the grim, surreal and unexpectedly revelatory moments she experienced at diagnosis, during treatment and beyond.

It was only published two months ago and I adore it. I’ve found that so many of Hayley’s experiences match mine. Not least the outer spacey feelings.

I’d recommend it to anyone facing or undergoing treatment.

In the meantime, my bones are strengthening and so am I. I’m tentatively hopeful of a better year to come. On November 11, 2024, I had no idea what I’d lose or find along the way. Like Hayley, many things have surprised me. I’ve lost: my lymph nodes, my trust in my body, a heck of a lot of muscles, some friendships, and the ability to give blood or donate my organs.2

I’ve gained: one helpful critical illness pay-out, one tanned breast, a full mop of curly hair, and a determination to make the most of every day, week and year I have left.

Before I go on, let me reiterate - I am grateful to be here. I am beyond ecstatic that I had the best possible response to chemo. I know how lucky I am.

But if you’re still reading my posts, I promised you honesty — and the honest truth is that after treatment, you don’t just go back to the Old You. And how we look after treatment is the tip of the iceberg.

The stranger in the mirror

Holidays are awesome. Yet when I climb into my swimming costume, or do my eyeliner in the vast mirror of a strange bathroom, or wear clothes I haven’t worn since the summer of 2024, the differences seem stark.

My previously straight hair is so curly.1 My thighs are so curvy (I’ve put back on all the weight I lost in chemo). My hips are so achy. My armpit is so lumpy. And my poor irradiated breast is so… peely. 2

Now, people tell me my pixie style suits me, and I do quite like it. I definitely prefer it how it looked in June. It just wasn’t my choice to look this way.

Usually on holiday I'm the one doing laps in the pool and jogging before sunrise. Instead I was the one with the untoned body and cropped hair who made weird noises when she stood up and considered a short walk on the beach a superhuman level of ‘exercise’.

I'm sure there's some kind of lesson here about patience but I'm too impatient to learn it.

Tzatziki and the existential crisis

Holidays also give you time out of your usual environment to think, which can be confronting. My dark night of the soul was triggered by the hotel buffet. I overdid it with the hummus and tzatziki (OK, maybe the desserts played a part, too) and ended up with indigestion. It felt so much like the heartburn I had 24/7 during chemo that I panicked.

I turned to AI to calm me down because it can’t yet raise its eyebrows and never says ‘not again.’ It concluded that indigestion wasn’t the issue. Instead, I was having an existential crisis. And if anyone should know about existential crises, I guess it might be an artificial intelligence entity that doesn't exist either.

But it had a valid point. What is the purpose of Kate 2.0? I'm teaching again which I enjoy. Writing too, though my steroid-induced confidence has now disappeared, and the one part of the old me I can recognise is the self-doubt.

Maybe Kate 2.0 is here for honesty about this phase. Except I fear no one wants to know. Do you? I mean, it’s morbidly fascinating when someone has all the drama of diagnosis and chemo and surgery, but now… less so.

Pointlessness as a life goal

Or maybe - and this rattles me even more - Kate 2.0 doesn’t need a point. Like many of us, I grew up knowing my family valued achievement. I’ve been a perfectionist from my first day at infants’ school.

Since leaving education, I’ve found different measures of success. Jobs, books, weight. Even on holiday I was cross if I didn’t do 250 steps per hour. And I would never, ever skip a day’s Duolingo (I hit 1,450 on my streak today)!

The thought is terrifying but it also makes me curious. If you’ve followed my progress, you’ll know that through treatment I’ve set goals every month, just like I did before cancer. It kept me feeling normal, and gave me something to aim for. In September, I even listed things I wanted to do - a kind of non-bucket list - and swimming in the sea was one, finishing a book draft was another. But though I enjoyed both, the rest of the list makes me feel pressurised right now. I have been ticking boxes my entire life.

Maybe it’s time to change that too?

Low-Mo November

So for November, I have set myself ZERO goals and embracing low motivation. No set number of books to read, or days of exercise or meditation. No word count or pages I challenge myself to edit.

No guilt when I don’t achieve the items on my list?

Of course, this also means no dopamine pop when I tick something off. And it doesn’t mean I’m excused from paying bills or marking assignments. I just want to try to tune into what Kate 2.0 wants to do, day by day.

It’s not easy. Already I am freaked out that last week, my Fitbit says I didn’t hit the 150 minutes of moderate activity recommended by the American Heart Association… I only managed a slovenly 122 (and it’s reminded me too that my resting heart rate has increased by 10 over the last year, which makes me feel I’ve failed).

And yet… I did all the right things and I still got cancer. My legs and knees and hips are sore and tired. I had a drip treatment six days ago that knocks a lot of people out for 72 hours. So 150 minutes is too much - a short walk is enough most days, given that my limbs are quite hurty. I’m teaching a course (which I really enjoy). I am entitled to rest.

Low-Mo November has started well. On Saturday night I made it to an ABC gig. And yesterday, I randomly decided to make an apple crumble (this recipe is the best ever). Before this, I’d done virtually no real cooking for months and months, after losing my appetite and my energy.

A gig and a crumble? That did feel more like me.

I’m not throwing the Old Me out. Couldn’t even if I wanted to. But the negative side of the need for external validation has come into very sharp focus for me. Do I really need Fitbit to tell me off for not moving ‘enough’? If I skip a day of French, would the world end? And if I don’t feel like reading, why force myself?

My hair will grow at the rate it chooses. My heart will probably recover, and I’ll do more exercise when it feels good again.

But as a child of the 80s, the thought of being blasted by radiation wasn’t an easy thing to get my head round (my nuclear paranoia was so acute that I wrote an entire novel about it). Still, most former patients I spoke to said it’d be easy compared to chemo and immunotherapy and surgery...

So what has it been like? Let me give you the lowdown on going nuclear…

Mapping the territory…

Radiotherapy begins with a planning session - and you know how I love to Have a Plan. Inevitably, it involves a scan. Having a CT used to freak me out, and I still don’t love the sounds and smells of hospitals.

But the treatment is in another centre, so I didn’t get the residual anxiety associated with the chemo suite (nothing to do with the staff, just how horrible the treatments were).

The team recommended getting my underarm ‘cording’ looked at before treatment started. If you’re blissfully ignorant, as I was before this started, cords are strings of scar tissue that often develop after the underarm lymph nodes are removed. Imagine very thick elastic bands that can even be seen under the skin!

The official name is axillary web syndrome because, I guess, they’re a bit like the webs a Rambo-like spider might spin if she was deposited in your armpit.

Even weirder, the way to tackle them is to MASSAGE THEM UNTIL THEY SNAP. You can literally hear them break as expert fingers get to work. And, once I’d had those dealt with, most of my seroma decided to leave too. What was a watermelon side-boob is now no bigger than a flattened conker.

A vision in lilac…

Along with a de-corded armpit, I got a new outfit for RT sessions: this lilac tunic has Velcro pull-down flaps for exposing your chest at the right time without you having to get completely naked. I usually like this colour on me, but it might have odd associations in future. However, I did feel almost as though I was part of the team because it was a uniform. I quite liked that.

A space age torture dungeon…

Like most people, I didn’t know what to expect of a radiotherapy ‘suite’.

Still, the friendly staff didn’t act like androids or sex robots (not that I’d be able to spot one) so I climbed onto the platform via a tiny set of stairs, bent my knees over the plastic moulded stand, and assumed the position…

When I say assumed the position, it’s precisely laser-guided so that they zap the right parts (in my case, the whole of my right breast) and minimise collateral damage. Not a time to decide you’re desperate to scratch your nose.

It was sore at first - not the treatment itself but holding my arms above my head. After session 1, I learned to take a paracetamol half an hour in advance, and gradually my muscles adapted.

Hold your breath, count to twenty, and then a bit more…

The other thing to get used to was the ‘breath hold’ - strange as it seems, if you puff out your chest while the radiation is beaming down, your breast moves closer to the machine and the vital organs below are better protected from any damage.

This is always done for treatment on the left side, to protect the heart, but can also be used for right-side radiotherapy like mine, as it reduces the risk to the liver.

You can’t do the kind of breath you’d use for meditation, because you have to only move the top part of your ribcage, and make sure your back doesn’t lose contact with the ‘bed.’ And each time you have treatment, you are scanned again to make sure you’re in exactly the right position - holding your breath for that takes up to 25 seconds. It feels like a lot longer!

Ready to go nuclear?

Finally, after all the prep, it was time to go nuclear. And there were no explosions or sirens (despite the scary sign outside). Instead, I was left alone to avoid the staff being exposed to radiation while the machines did their thing.

That’s how all aspects of cancer treatment feel at times: that the world revolves around you as the patient. Or rather, your physical self, and all its multiple systems. Your mind is neglected, because that can’t be scanned. What you think and feel about all of this may not be clear until much later.

The moments when you’re being zapped are marked by a low-key buzzer sound rather than anything more dramatic. As a perfectionist I was determined to hold my breath for the requisite time during each dose, but I was told that this latest kit means if you need to breathe, the rays stop automatically until you’re ready to inhale again.

Lonely in lilac

Everyone was kind and cheerful and, apart from the breath holds, the treatment involved no fortitude from me whatsoever.

But I did feel profoundly lonely during treatment. I was being blasted, however silently and painlessly. Just as the other treatments involve consenting to toxic or damaging things, so does radiotherapy.

After all, we weren’t designed to be irradiated and I remember very clearly being 13 and watching a film our radical English teacher found, featuring people in Hiroshima suffering the horrific after-effects of nuclear fallout.

Rationally I know there’s a vast difference (though it has just occurred to me that the blossom images on the ceiling above the radiotherapy machine did make me think of Japan). That we’re targeting the bad cells and it’s For The Greater Good. But even so, I have never felt quite so alone as I did for those short minutes.

After the treatment finished each time, I moisturised the area like my life (or skin) depended on it.

The bells, the bells…

And then, five days later, it was over.

Not just radiotherapy but fingers, eyes, knees, toes crossed, all the scary cancer treatment. We can never say never again but at least, for now, I don’t have anything ending with ‘apy’ scheduled.

I’ve always found the bell-ringing thing a bit stagey, plus there wasn’t one at the centre where I had chemo. In any case, my chemo ended one session sooner than planned anyway. But when the radiographer asked if I wanted to ring the end-of-treatment bell and I thought, why the hell not.

So here I am. Golly, I hate this picture, even after my pal touched up my steroid jowls. I look like an elderly Oompah Loompah. But I love what it represents.

The Fall-out…

Anyhow, it’s now two weeks since my first zapping and I feel OK. The area zapped is itchy at times and it looks like I’ve gone topless sunbathing but only on one side (radiation tans are a thing). Maybe the numbness in that area caused by surgery is a blessing right now. I’m still moisturising twice a day.

I’m also sleepy after dark, so I go to bed very early, but during the day I’m fine, so maybe I’ve escaped the threatened fatigue.

What now?

And now I have to get used to my life not revolving around medical stuff. I’m still on steroids and due to have infusions for the colitis but hopefully they’ll be less necessary in time. And I might have bone protection jabs. And there will be check ups and scanxiety and hyper-vigilance. Not to mention the task of rebuilding my fitness and work life.

Thanks so much as always for being here with me through this process. As far as I know, I’m not actually a health hazard in person or online…

The comfort offered by radiotherapy is knowing I’ve taken every step I can to try to belong to the 90% of women who don’t get a recurrence of triple negative.

It’s all we can do.

Nails are under-rated. During chemo, I become a manicure obsessive - based on the unproven theory that dark nail varnish can protect from damage. But as my nails are looking pretty healthy now (Polybalm definitely helped, it’s still my number 1 tip as a gift for new patients), I decided they could go naked for a bit.

And I realised they're striped!

The graduation in colour made me think about the rings on a tree and how those mark the passage of time.

My nails seem to show my progression through chemo - I’m guessing the paler sections reflect side effects. They certainly sum up the colourlessness of life during that long six months of intense treatment.

Which means I am now in the pink again!

Re-growing pains

Except it’s never quite that simple. After the news of my amazing response to chemo, which eliminated the cancer cells, I was all set for a fabulous August of beaches, barbies and bliss.

But treatment had a few stings in the tail. My side-boob seems to have taken up permanent residence. I’ve now had it drained four times, over 1.5 litres so far, only for it to refill each time. You can get used to anything I guess…

I also have loss of feeling in my toes (neuropathy caused by chemo) , oversensitive teeth and gums (even sweet things hurt to eat), and strange corrugated skin on my fingertips as though I've spent days in the bath.

But it’s the heavy steroids that fixed my breathing problems which have caused me the most distress. The insomnia has lasted three months: the chipmunk cheeks, muscle loss and huge hump on the back of my neck are not attractive, especially with short hair. My hair almost looks like an actual style now but in the words of Nora Ephron, I feel bad about my neck.

And grumpiness replaced the euphoria I wrote about before, as I started to wean off prednisolone very, very gradually, like it wouldn’t notice if I just tiptoed away.

Didn’t work. First, I developed a dodgy hip which hurt so much I couldn’t walk for a couple of weeks - apparently that’s because mega-steroids suppress all inflammation which then pops back up again as you reduce the dose.

And Pembrolizumab (my immunotherapy drug) struck back again even though I haven’t had any since February. As steroid levels dropped, my pembro-primed immune system went all Keeley Hawes, deciding my gut was a dangerous assassin that needed to be exterminated.

Hello colitis, my old friend…

It was rough. But three weeks, multiple hospital trips and six IV drips later, my symptoms are finally improving. Oh, I missed my PICC line, I can tell you, especially now I can only have cannulas in my left arm (the right one gets kid glove treatment because I don’t have lymph nodes any more).

I’ve been gifted new, hot pink steroid pills with a ridiculous name (I wasn’t keen but at least it’s not the dreaded prednisolone) and I can leave the house for fun things again. Like taking the dog to see Jaws, as you do.

And another new experience is in store: five days of radiotherapy, which will, fingers crossed, be my last cancer treatment. In my last post, I asked for opinions and experiences. Huge thanks to everyone who responded. I went backwards and forwards for a few weeks, before deciding to go ahead for peace of mind - despite no direct evidence that it’ll help because they never found any cancer in the breast.

September satchel energy

Meanwhile, I’ve always loved that September back-to-school energy and this year I’m embracing it with even more passion. I might even get a new pencil case.

I want to live all the life I’ve missed out on in the last nine months; the life I feared I might not GET to live. I decided to brainstorm wildly, thinking of everything I’d love to do (budget, time and side effects allowing) and here’s a selection:

• swim in the deep blue Greek sea

• eat triple-crème French cheese with a fresh baguette in France

• drink manzanilla with patatas bravas on a Spanish harbour front

• enjoy a pistachio gelato in an Italian piazza

• complete 5k through autumn leaves (I originally wrote run 5k but it’s going to take me a bit longer to get fit enough to jog that distance

• take singing lessons

• maybe take acting classes too

• finish writing my grandma-inspired novel

• eat vegetables again (colitis has put me back on the white bread & banana diet)

• eat at the very pricy but wonderful-looking Etch restaurant in Hove (which has been on my list for soo long: look at the veggie starters alone)

  

• do more sewing now I have a good idea what my body shape is going to be (not that different from the old one)

• have botox (I wish I was over vanity but seriously, I am feeling like I’ve aged 10 years and maybe it’d help)

• learn to make mechanical automata (I have become a bit obsessed with these: maybe I could do a chemo one)

• volunteer for something that connects back to my cancer experiences (though I may delay this as the feelings are still very raw)

• think about turning this blog into a fund-raising e-book

• have some therapy or do a ‘life after cancer’ type course to help with accepting what I’ve experienced since I found that small lump under my arm in November 2024.

Self-indulgent? Yup. Over-ambitious? Definitely. But hey, I’m ready to try…

It is what it bloody well is

What’s my point today? I’m both incredibly grateful and a bit cheesed off. Sick and well. Hard as nails but soft as butter. What does it actually mean?

Maybe nothing. Life isn’t fair. Accepting the truth of that is like accepting Father Christmas doesn’t exist. It’s putting aside childish things.

It is what it bloody well is… I don’t love that phrase but it’s reality.

We all have our crises and dramas, and cancer doesn’t make us special or exceptional. I’m no braver or more saintly than I was before. I’m certainly not ‘glad it happened.’ I am glad though that the treatment is almost done.

What I do want to make the most of is this period of resurgence and refocusing - and maybe you want to join me in dreaming of good times and second chances?

Back at you!

What would you love to do in the next few months? Imagine seizing the day and following your heart. Will you be chilling on the beach with me, or trekking the Inca trail? Fighting for a cause you believe in or creating something inspiring?

Planting a tree or painting your nails?

Do hit reply and tell me what you’re dreaming of for the last third of 2025…

Leave a comment

Obviously, I’m still absolutely delighted that my treatment worked. But you know what?

Cancer language is weird.

I used the shorthand of ‘all-clear’ to explain what my oncologist told me. But that’s not the phrase they use - neither do they use ‘in remission’ and definitely not ‘cancer free.’ The phrase that gets us popping champagne corks is…

….wait for it…

NO EVIDENCE OF DISEASE!

Yay!! Um? Yeah, hip, hip… you what?

So why I haven’t seen a line of greetings cards being developed for this yet? Anyone interested? Well done on no one being able to find anything nasty this time round! Congratulations, you’re NED not Dead!

Precision is everything for medics. I had evidence of triple negative breast disease - that lump which, as a warning, saved my life. The pathologists can no longer find any. That’s about as good as it gets because how do any of us ever know what else lies hidden in our trillions of cells?

What I have is a PCR - a Pathological Complete Response to chemo and immunotherapy. So the live cells that caused the lump are gone - all the scientists could find were cells that seemed to have been killed off by treatment.

This is fantastic news, not just because the known cancer has gone. It also suggests that if triple negative cells have roamed elsewhere in my body - TNBC likes to travel - the chemo ought to have eliminated those too.

That’s the reason doctors now prefer to give chemo before surgery for TNBC - your tumour acts as a living lab to see what works - so patients who don’t have a complete response know they may need other treatment. That includes radiotherapy, more immunotherapy or new chemo drugs.

It’s your choice - my strange radiotherapy dilemma

But here’s the very weird thing for me now. All along, I’ve been told I would need radiotherapy - 15 sessions, one a day, to my whole right breast - after surgery.

My oncologist told me in the latest appointment that the suggestion now would be only FIVE sessions, so one week total.

But… it’s now totally up to me whether to have it. Because the evidence isn’t there to say whether it’ll be of any benefit.

Now this is strange on all levels. When you have a diagnosis like mine, it’s always your choice what to do. But if you trust your doctors, and enjoy your life, you will tend to follow recommendations.

Suddenly, it’s all about risk vs. benefit. No obvious benefit. Unpredictable risk.

The treatment now is sophisticated, targeted and well-tolerated. But at the very least, this will tire me out, and can cause skin changes or make your breast shrink or grow. As I have larger breasts, it’s likely to cause blistering underneath.

• If I have it, it’s belt and braces, an insurance policy, a just in case. But it might make me unwell or sore or, effectively, cause lasting visual reminders.

• But if I don’t have it, and the cancer returns (which happens more often with TNBC than other breast cancers), I will wonder whether radiotherapy might have prevented recurrence.

So - what would you do?

Genuinely, I’d love to know, especially if you’ve faced a similar dilemma.

Better safe than sorry - and the side-boob intervention

I’m a cautious person: my default is to tick all the boxes. So I said yes. I wanted to crack on, too. Despite major surgery, I was feeling good to go.

But then came an unexpected item in the armpit area…

In the conventional place, this would be an awesome boob - perky and bouncy as a waterbed. But it’s really not welcome in my armpit. I can’t hold my arm against my side and the pressure it causes does make my skin feel very sore and stops me sleeping. I can actually hear sloshing when I walk too fast, too.

My surgeon took one look and then got out a Carry On Matron-sized syringe, and a kidney dish. I winced and looked away.

But hooray! I didn’t feel a thing (the op cut through nerves so I am numb there now) but blimey - the liquid that came out was lager-coloured, with a proper frothy head. Together with the nurse, we reminisced over Gen-X 90s nights (the gurgling sound effects weren’t dissimilar).

I produced over half a litre - a full pint! It was the most painless and satisfying procedure of my life, frankly. The relief was immense.

Until it started refilling….

This is common after breast surgery, especially a lymph node clearance. Mostly you just need to keep draining till it stops. Though mine is probably worsened by the high dose steroids. So I’m trying to taper off those faster even though withdrawal makes my mood unstable and is also worsening the chemo-numbness in my feet and legs.

Also, I can’t have the radiotherapy until the side-boob (technically called a seroma) goes away, so my week of zapping on hold.

BUT STILL SO LUCKY

I am still feeling hugely happy. The treatment worked. I don’t need more chemo. A type of cancer that 5-10 years ago had a very scary prognosis has been sent packing.

I am incredibly lucky and joyful. But also a bit sore and temporarily cheesed off and in need of distraction...

What would you like to read next?

Professional work is building up again: podcasts and my own novel, plus planning for the next session of Jericho’s fantastic Path to Publication course for writers ready to submit their novels. I want to do some of the trips we put on hold but not until the side-boob has gone because it’s no fun in trains/planes/automobiles with your own built-in water-wing.

As for this diary? I love hearing from you and writing regularly. I still have useful tips for new patients, but would also love to write about food, exercise and mindset after this unexpected plot twist; and books, creativity, Brighton and life.

So what would you like to read? Please me know in the comments.

Leave a comment

There's nothing fancy about today's post. Except for a little filter to cover up dark Shadows under my eyes from sleepless steroid nights waiting for my result. Last night we went to see the Human League on Brighton beach and Mirror Man made me cry, which is odd.

But today I got the best news ever.

I've had a complete pathological response to chemo and immunotherapy. Which means the cancer I found under my arm in November has gone.What doesn't kill you really does make you stronger. Mostly!

Thank you for being with me. It has been lifesaving. I have three weeks of radiotherapy to do as an insurance policy against Triple Negative Breast Cancer, which likes to revisit the scene of its crimes, so I'll let you know all about being zapped!

But for now I feel like the luckiest woman alive. I wish my parents were here to share the news with. I'm so grateful.

As an aside I've ditched all healthy eating for the day and it seems my celebration foods are largely but not exclusively potato based:

• Most of a family sized pack of balsamic vinegar crisps;

• M&S Charlotte potato salad;

• Dips. All the dips;

• Some token salad;

• Monty Bojangles truffle bites

• Champagne.

PS: fyi, sugar doesn't give you cancer.

With all my love and thanks,

Kate xx

Last Friday, I had my first operation since having my tonsils out aged 11: surgery to remove the cancer from my armpit. And it has been totally fine: massively relieved and pleasantly surprised by how little discomfort there’s been and hoping it continues that way.

My weird diagnosis

Compared to many people with a breast cancer diagnosis, my surgery has been quite straightforward - partly because of my thoroughly peculiar diagnosis (which is found in only around 1% of cases). They never found a lump in either breast, and had I not noticed the lump in my armpit myself, the cancer might have progressed a lot further before diagnosis.

There are three theories:

1. there is cancer in my breast, but too small to be detected (though I had a lot of scans).

2. OR my immune system somehow cleared the tumour from the breast, but it then set up home in the lymph node .

3. OR the tumour started growing the axillary (armpit) lymph node - medics find this less likely because it’s a bit of a cul-de-sac, really only leading to and from the breasts.

Lymph node love - my tribute!

The downside is that the lymph nodes that play such a vital part in our immune system so ideally you hang onto them. But needs must, and the operation removed all of them from that side, in three ‘blocks’, as far up as the area under my collarbone.

Before surgery, I couldn’t find much information about a ‘level 3 dissection’ or ‘clearance’ without lumpectomy, which added to my nerves but the lovely surgeon seems to have done a very careful and neat job.

I feel far less sore than expected and though the wound under my arm is quite long - he needed a good rummage around - it should heal well. I’m quite numb round my lower arm, because that area is rich in nerve endings and muscle: that might be permanent, or may improve.

Sacrificing all the nodes does increase my risk of swelling and infection for life. The old advice used to be to not overexercise the arm, always wear Margot-Leadbetter style gardening gloves - and a total ban on saunas (I LOVE saunas), or even embroidery! But that advice is outmoded. It seems it’s mostly the luck of the draw.

The three ‘blocks’ are now in a lab being tested to see if any of the other nodes show past or present sign of cancer, because they’re all linked together like a chain of beads so dodgy cells can move from one to another.

Living in lymph node limbo land.

I don’t even know yet how many nodes took out because we’re all different. Just before the op, I had a madly weird idea for a lymph lotto in aid of the tiny charity, Little Lifts. They send boxes full of goodies to help patients undergoing treatment and have sent over 30,000 in the UK.

Lots of people have been generous and honestly, PLEASE don’t feel the need to get involved. I also want to make other patients aware what a lovely charity this is.

My Little Lifts box made me feel really nurtured at a tough time - there was skincare, food items, and an eye mask, all NHS approved as safe, And if you’re going through it too, you can ask them for one. Just add your details HERE if you’re having chemo, radiotherapy or surgery in the UK right now.

can do if you like and just guess how many lymph nodes the doctors will find (you don’t have to make a donation). The lotto is open till I get my results: I’ll send a lovely posy of Bloom & Wild flowers to whoever guesses closest.

Surgery ups and downs

The days since the op have been less painful but more emotional than I expected, to be honest. I’ve only needed paracetamol and hugs. I couldn’t sleep the night after the op because of steroids. I watched the lightning criss-cross the sky. I came home Saturday morning to big doggy licks.

But as many patients find, surgery brings up all the emotions. The reality of all I’ve experienced over the last nine months hit home again, plus anaesthetics mess with your head. Sunday was not my proudest day in self-pity terms.

But it’s Monday now and I don’t ache too much.

When I found the lump, it was between 3 and 4cm, roughly the size of a Brussels Sprout. But when the surgeon took it out it was roughly a tenth of that, after treatment. It was peculiar knowing it stayed with me for eight months (oncologists prefer to leave it during chemo so we can judge how far the tumour responds - like being a human petri dish). And I am also grateful to that node for showing me there was a problem…

Welcome to the land of extraordinary steroid highs. First, my brilliant lung news: the drug I was prescribed to stop the immunotherapy toxicity has done the trick - my latest CT shows almost all the scarring has gone already.

But that’s not even the most striking thing about these common pills.

Steroids have turned me into an irrepressible optimist (and made me better at catching balls)

No one wants to be a pessimist. So I've put in the work over the years to see my glass as half full. Depression dogs families, mine included, so I have tried all the things: CBT, mindfulness, therapy, meditation, exercise, plus the pills designed to correct chemical imbalances that might be a factor. I understand myself better but nothing has worked 100% to make me feel better.

Confidence has always been my downfall: like so many ruminators (not to be confused with ruminants), I've never really seen myself as ‘enough’ and I often default to blaming myself if something goes wrong or someone treats me badly.

I said ruminator, not ruminant… but here’s a giraffe anyway.

But in June, everything changed.

Enter Prednisolone (known as prednisone in the US), my confidence-boosting pal. Where have you been all my life?

Pred + Me = Kate 2.0

Since I started my big doses of pred, my mindset has shifted. It didn’t happen immediately: I was still really poorly I got pred via drip for 8 days. But my lungs recovered really fast.

As I switched to tablets instead (lots of them: a normal dose is around 5mg and I was on 120mg at first), the energy and euphoria kicked in. At first, I couldn’t tell if it was just relief at ending chemo and surviving an emergency I feared could kill me?

Now, five weeks since my first IV steroids, the mood difference is significant. I’m already tapering down my dose (they have a lot of side-effects including insomnia, bone and muscle loss, the dreaded chipmunk cheeks and neck fat!), yet I feel utterly brilliant.

The shift has been so extreme, it made me question everything I thought I knew about mood, medication and identity.

I’m a believer

Psychology has always fascinated me. Interviewing people as a journalist allowed me to unpick their motivations and behaviours.

But this feels more fundamental: weird and wonderful. Here’s what I’ve gained:

• Clarity: the brain fog chemo gave me has lifted. My memory works faster and I can see tasks and do them right away. No procrastination. I am clearing out the junk in our loft. Shredding gives me particular joy. I’m also writing a new novel and it feels like I’m watching it play out in my head.

• Emotions: I still feel happiness, sadness, regret, loss, but they're not overwhelming. As an example, my dad loved taking photographs and I inherited thousands. For the last three years, they’ve been too painful to sift through but now I’m doing exactly that. And I’m only keeping the ones where we’re smiling or look moodily gorgeous.

• Confidence and self worth: this is the big one. I feel I’m good enough. Not perfect. Not terrible. But I can see my strengths and accept my weaknesses (maybe try to work on those too).

I believe in myself. That’s life-changing.

So is it all about the meds? Because more often than not, steroids are associated with negative effects on mental health.

Meds vs. feeling better anyway?

When it comes to mood boosts, there’s another factor. This mindset shift coincided with the end of my first phase of treatment. Might the relief at stopping chemo be responsible?

Partly, I'm sure. But treatment is far from over.

I have surgery scheduled this week, then radiotherapy. Maybe more treatment if the cancer's being particularly stubborn.

There is definitely an emotional uplift from having made it this far, not to mention all the hair I’m growing (yes, even the downy whiskers on my chin).

And as an aside, after going through those family photos, please note the similarities in my hairline now, and the last time I had quite this little hair…

I was a chubby, happy baby but I think the blues kicked in during childhood. So how can things be so different now?

What does it tell us about the brain and depression?

I thought I’d start by trying to understand how prednisolone works on the brain because I’m geeky that way.

The Government’s drug safety website has a long list of dodgy mental effects:

affective disorders (eg, irritable, euphoric, depressed, and labile mood, and suicidal thoughts); psychotic reactions (eg, mania, delusions, hallucinations, and aggravation of schizophrenia); behavioural disturbances; irritability; anxiety; sleep disturbances; and cognitive dysfunction (including confusion and amnesia).

Verywell Health has a more positive spin about mood swings:

from euphoria to anxiety, anger, and depression. These feelings can pinball back and forth in quick succession and seem to come about irrationally (for no reason) and without provocation.

But why? Google tells me it could be affecting the same chemicals anti-depressants try to balance.

Neurotransmitter Imbalances: Corticosteroids can alter the levels and activity of neurotransmitters like dopamine, serotonin, and glutamate, which are crucial for mood regulation. For example, increased dopamine activity has been linked to mood elevation and even euphoria in some individuals taking corticosteroids.

This makes sense to me. But before you try to source your own (or make the mistake of getting anabolic steroids from your local bodybuilder, as those are very different), it seems highly individual. You might end up happier — but most the research focuses on where the effects are undesirable and classified as a psychiatric disorder.

I’m wondering whether it’s a bit like having a glass of wine - the mood you’re in beforehand influences whether it makes you want to laugh or cry…

Too much? Living with a possible hypo-maniac

I’ve known people on steroids who become aggressive or hungry enough to eat the contents of a fridge. So I have tried to be honest…

I am being more direct - maybe one layer less of British politeness. I’m not sure this is always a bad thing, but it’s not what people expect of me. And yes, I’m snappy occasionally but I try not to be!

The lack of sleep isn’t sustainable long term and I’m already down to almost half my original dose. Interestingly, that’s the same dose I was on when I had the same drug for colitis in March and had none of these mood boosts.

Oh, and this weekend, I also discovered I am about three times better at catching balls one-handed.

The thing is, I love the way it’s making me feel… so can I manage to sustain the good stuff after I wave the pills bye-bye?

Fostering pred power

All the pop psychology I’ve read hasn’t made me a true optimist - so biochemistry must be part of this. But can I try to harness this for the future? Maintain the positive thoughts and feelings.

I hope so. I came through this gruelling treatment. I was strong enough to keep showing up. I’m proud of this blog and how some people are already finding it useful. I’m bloody delighted to be alive every single day.

Surgery is a new challenge - and the results are beyond my control. I can think positive, negative, that the moon is made of blue cheese, but the tumour will have done whatever its DNA told it to.

Walking the walk, thinking the think

It’s a bit like retraining yourself to walk. Which I’m also trying to do right now (what did I say about the energy?). I am very clumsy anyway, and the loss of feeling in my toes has made me trip loads of times. Scuffed knees are cute at 5, not so much in your 50s. They sting at any age.

So with every step I take, I try to land very deliberately heel first, solid, rather than dragging my toes. Harder than you’d think to remember after however many billion steps I have taken in my lifetime.

But… it does get easier. Can I do that with my thoughts, too?

I guess the secret is to keep putting one fresh step in front of another.

It has been the most intense of joys, as well as rather disorientating.

Re-entry to earth after seven months in orbit.

Like poor Laika the Russian space dog, I’ve been cut off from normal life. Not literally orbiting miles above the earth, but at times I might as well have been - watching the familiar from a distance, unable to participate myself.

Perhaps I could have been less reclusive, but my biopsy was taken as November darkened the skies. My diagnosis and first treatment came as dusk set on the shortest days. Daylight and normality faded away.

Unlike Laika1, I had my partner and friends at my side, with readers like you supporting me, too. Yet ultimately every cancer patient is on their own with their symptoms, emotions and fears.

That disconnection can be abrupt. Thoughts change, routines are jettisoned: dare I plan for tomorrow, next week, next month? What can I eat? Should I impose my own personal lockdown, sell those gig tickets, cancel that restaurant booking?

Must I buy a wig, shave my head, try cold-capping? Tell the nurses about every symptom or be stoic? Celebrate the treatment or ask questions about the downsides?

As you make decisions you're not remotely qualified for, you’re still watching from your chemo bubble, tethered to a machine that promises to cure and poison you. Hooked up to another that freezes your scalp and makes you look like a retro astronaut.

And everything you never appreciated about your life plays out below. The planned months of chemo seem like a sentence for a crime you didn’t even know you committed, yet also - just bad luck.

This will never end…

Then it does.

And the end begins with your doctor saying you’re fit to fly, and then a scramble for travel insurance with more questions than an A Level paper, several refusals and an eye-watering bill that soon seems like a bargain.

And packing when you’ve forgotten how to travel but also have so many things that MIGHT GO WRONG that end up with a case twice as heavy as usual.

And a lift to the airport from the partner who will miss you but not miss sharing hypervigilance for a few days. And the overwhelm of Gatwick and security, and the worry about your passport photo matching the new nearly-hairless version, but also the comfort of good friends who want to take care of you.

Then take off: skies and the Channel and the horizon.

Subscribe now

A broadening and a grounding.

My French Duolingo (I kept my streak going through all my days in hospital) has been giving me the word ‘land’ all the time recently - atterrir. Coming down to earth.

Being here, with outstanding food, like-minded people, wonderful hosts, no pressures, and a very reassuring French pharmacy around the corner, has been such a high. I’ve been overwhelmed at times, and quite tired, because I arrived only two weeks after being discharged from hospital.

And I got to be with two of my very dearest writing friends, Rowan and Julie, whose support and kindness kept me going in the darkest times. Being back in the light with them was priceless.

The pure joy of it is hard to describe. And the physical recovery has been staggering, too: my hair growing, my eyebrows almost back to what they were, and although swimming made unused muscles ache, it was a good ache.

The mega-dose steroids are still coursing around my system, swelling my chipmunk cheeks, which aren’t broken up by hair yet.

And I’m hyper and sleepless and mercurial. But it's good recovery energy.

A message of hope from the other side…

So if you’re in your chemo journey or supporting someone else, tell them it does end. No one would have this treatment without a threat to life. But the contrast when you have a break, or the chemo ends, feels like a miracle. I don’t know how long it’ll last. But I want to hold onto this feeling when the normal becomes mundane again and to visualise these moments as I recover from my surgery later this month.

It’s so good to be back on earth.

But we did toast the news during my emergency stay in hospital, with a can of ginger ale and a chocolate truffle.

BUT: right upfront I want to reassure anyone about to start chemo: it is not always like this. I got unlucky. It’s proof of what medics said to me at the start - everyone responds differently and it’s highly unpredictable. The chances are, your experience will be very different.

However, it was important to me yesterday when I saw my consultant that he acknowledged that I’d had a rough ride - there have been times when I’ve worried that my response to treatment showed I’m a wimp. No, he said:

‘You have had a complicated and difficult time with chemo. You crash hard but you bounce back.’

I should be able to recognise this myself, right? But it helps to hear it from someone with decades of experience.

So in this post, I'm dying to focus on the bounce back: if you’ve been following me, thank you. You deserve this, too. There will be lots of before/after photos.

The green shoots are genuinely astonishing to me — if you are in the middle of chemo, I know it won’t seem possible that this day can come.

But two weeks ago I was on an A&E trolley, struggling to breathe. Today I feel like a new woman, with brows to match. Believe me, it happens. The body’s capacity for renewal is amazing.

Main Character Eyebrows and Lashes of Lashes

Then: My brows and lashes were the very last to go - this is common. After hanging in there for five months, they were whisked away by EC, along with the last of my nose hairs. Brows are relatively easy to draw on, but I missed the lashes the most.

Now: the first teeny tiny eyebrow hairs showed within 10 days of ending chemo. The eyelashes were still falling then, I counted them all out (Falklands echo for 80s kids) and about a week ago, I started counting them back.

The day I could highlight them with a little new mascara was a landmark. I will never not put mascara on again.

Every day, I beg my partner to do a brow check and he patiently complies. There are loads of them. I’ve always had weirdly black eyebrows and right now they’re more salt and pepper, but I can now get away without brow pencil if I am lazy, without looking like a Tefalhead.

Nose hair wise, I became massively sensitive to all cooking smells when they departed, and got a permanent (though not too annoying) drippy nose. Now I can tolerate the smell of onions again.

Good and bad hair days:

Hair loss is the biggie for many of us and I’ve described my journey through cold capping. In the end, it worked a bit, I’d say. The first phase of treatment made me lose maybe 80% of my hair but when I look back at pictures now I am astonished at how lush it looks. The second phase took the rest except for a lick at the front. But all the time I’ve also had bits of regrowth in between, especially after treatment breaks.

A drastic way to transition to grey

When white hairs start coming through, you do wonder when you might stop dyeing and allow the white to show through. This is definitely the nuclear approach - because what’s growing back is white and dark, badger crossed with Mallen streak. The white bits don’t show against the scalp making me look balder in some parts than others.

Right now, though, I’m loving the tiny darker bits in front of my ears, silky as my terrier’s ears. And yesterday I had some of the Einstein halo trimmed off by my wonderful hairdresser, who also gave me a glorious scalp massage - another instance of something being done to me that wasn’t medical and it took me a while to relax into it.

I don’t think it suits me to be this short, especially as the steroids I’m on are bringing the moon face back. But. I can cope. Wigs are wonderful and I love my Rosie the Riveter scarf so much I've made another one of my own.

Fighting tooth and nail and the importance of self-care

Then: Nails can be the unexpected casualties of some chemo drugs and I was warned about this early, with a recommendation to use Polybalm and to paint my nails dark (the theory is this prevents UV damage, there seems to be no firm evidence but I did it anyway). Polybalm is expensive - I’ve spent £100 on two sets but the tubes have lasted for six months. I kept my nails and didn’t get any infections, though my thumbnails especially did weaken and my toenails looked iffy for a while.

The photos of what some people suffer - Day-Glo green infections and loss of their nails/dexterity made me convinced this was worth it - maybe ask a friend to gift you some?

Now: touch wood, they’re looking good. And caring for my nails became an unexpectedly pleasurable ritual during treatment. As the rest of my appearance fell apart, applying new colours was meditative and I got much better at it. I used OPI and Nailkind and non-acetone remover to minimise damage.

Even when I went into A&E I was determined to hang onto the sky blue polish I went in with, despite the staff's frustration when it interfered with measuring my oxygen sats. But that little stubborn element helped me feel like me, and I came home with it still on, albeit a little chipped…

Teeth and skin: I’m noticing a lot of freckling. But actually I have rather a nice glow at the moment - again, I did make moisturising a ritual, with very simple products, no retinol during chemo.

Dentally, chemo can be devastating and my teeth are pretty rubbish anyway. I have noticed they’re much more sensitive so need to get that checked out, I guess. But later. I want to be gentle with myself for a while…

Appetite and booze:

Then: The effect on my digestion has been the most consistently upsetting. Because chemo targets fast-growing cells (cancer cells but also those for hair, skin, digestive tract), you’re under attack inside and out. Gaviscon did help once I discovered it. Plus colitis meant I had to eat white bread, spuds and eggs with no veg for about 5 weeks. Yuk. I also drank very little alcohol because I didn’t fancy it and it made me feel worse.

Now: the heartburn has mostly stopped. I want to eat but actually healthy stuff and protein. And the odd truffle.

Alcohol wise, it’s summer, I have holidays planned before surgery. Yes, booze can increase your risk of cancer but hey, I’ve already got it. I am going to see what I fancy. Red wine, fizz, the odd margarita. Or maybe not. Now is definitely not the time to beat myself up. But I don’t fancy a hangover much either.

Farewell, PICC line - the best friend I never knew I needed

Then: having a long thin tube inserted from my inner arm into the bottom of my actual heart was one of the first invasive things to happen. It scared me. Yet within a few days, I realised how brilliant a PICC line can be. Used to deliver chemo drugs (which can be very damaging to narrow blood vessels) and to take bloods with zero pain, the line must have saved me from at least 200 cannulas and blood tests.

Even after chemo ended, it was used for the steroids that helped my lungs recover.

Now: But this week, I waved it goodbye. I felt nervous, like it was tempting fate to lose that safety net. The nurse asked me to exhale as it he pulled the line out, seemingly endless, like a skinny purple worm. It was painless except the slight sting from the antiseptic. My skin had been covered there for six months and looked very pale… but otherwise the scar is tiny and healing already.

The best bit is I can shower again and am going to be able to swim, hoorah!

Manic pixie steroid girl gives zero f***s

Then: I’ve been very low, as you know, and afraid and angry. But also sometimes determined and purposeful and amused.

Now: steroids rock! I’m full of pred-energy and I am starting to wean off though slowly so my immune system doesn’t decide to mount a new attack on a random organ. I'll look forward to sleeping again and losing my chubby cheeks once the drugs stop.

This crisis has given me back my mojo in the most unexpected way. I’ve reconnected with words and myself as a storyteller. As well as this blog, I have started a book rooted in my childhood that’s so different and may not ‘sell’ but makes me want to return to the page.

And this blog will be reinvented into something I hope patients might find useful - once I know the end of the story…

What happens next…?

Ah yes, the end of the story.

The last chemo is only the end of the beginning. It lasted from December 23 2024 to May 22 2025. 14 out of 16 completed, with two cancellations because my system couldn't take them.

Triple negative breast cancer is a brute, so treatment is designed to match.

Next step will be surgery to take out the lymph nodes under my right arm - the one known to have a tumour, and all the others connected to it. What the surgeon removes will be tested to see if chemo killed all the cancer cells or if there are some remaining.

Depending on that result, I either move into radiotherapy later in the summer OR have more chemo in pill form. I fervently hope it’s the former as the thought of more chemo isn’t enticing.

A heartfelt thank you

Actually, there is one last thing to do - to thank you for being here so far.

I have gained so much support from comments here and on Facebook. Your patience and empathy have made me feel less isolated and - that word again - validated. You’ve also made me feel I might be doing something that’s bigger than me, that this could be useful for patients and relatives, and that has prompted me to stay honest. My posts are too long but editing hasn’t been easy when I’ve wanted to record it for my own sake too. If I turn this into an e-book, I'll think more about my readers. So I appreciate your patience.

I intend to continue writing about my next adventures - I hope you’ll join me.

Here’s to green shoots wherever we can find them.

But a sensible voice tells me I have something important to do before updating you on brow and lash progress - and that’s to acknowledge the terror of the last week.

Seven days ago I was still very ill and deteriorating. The gap between my admission to A&E and effective treatment starting wasn’t any individual’s fault, but it’s those three helpless days that I need to process - along with a fear that the delay might have caused permanent damage. This is a long post because I want to get it down. Maybe one for the Grey’s Anatomy and Casualty fan.

2B or not to be

For context, my local hospital has been in ‘special measures’ and A&E is currently judged as ‘needing improvement. Certain other departments (not A&E) are subject to extensive police investigations for failings leading directly to the death of patients. Healthcare will always have flaws, health workers will always be human beings, combining the best and the worst.

I can’t fault most of the care I’ve received, especially from the ambulance crew (that reassuring shade of green is a personal favourite), the joyful staff nurse on A&E, the health care assistants and nurses on the Acute Medical Unit and EACU wards, and all the specialist doctors I encountered. Porters, cleaning and catering staff were also upbeat, kind and full of humour. Pharmacists were meticulous.

However, when I was moved from resus to 2B Majors - a long, dark corridor with blue curtains separating beds from each other in bays - my nightmare began.

The brilliant resus staff nurse came with me, the porters settled my trolley (no beds here) into Bay 23.

But then I was left alone.

My partner was with me, but couldn’t stay all night. We waited for my arrival at least to be acknowledged. After 20 minutes or so, my partner found a staff member who was on his mobile - reluctantly, he came to the bay and showed me the call bell.

When I’d been left alone for a lot longer and needed the toilet, I used the bell. He grumpily disconnected my oxygen and he pointed in the vague direction of a toilet. I almost fainted due to exertion (I wasn’t on a portable oxygen tank) and when I tried to get back into the ward, freezing cold after a fever spike, I knocked and leaned against the door. I didn’t get back in for almost 10 minutes because it was locked.

My only other staff encounters that night involved being given two heparin anti-clotting jabs in the belly with no explanation, first by him and then by another nurse. I hadn’t had them before - they hurt like stink - and I don’t even know if I was meant to have one or two.

I was so alone. 2B is gloomy, with no natural light sources, and no assigned nurses to each patient. Two staff members were extraordinarily kind but many ignored the bell. I had an awful fever twice a night and rang in vain for blankets. When I asked for two, because I was shaking, I was told to ‘try one’ and so by the time I accumulated three, I felt like these were the most precious belongings I had.

2B will be the place that comes to me in my bad dreams.

How can two wards right next to each other feel so different? I should say these working conditions must make life intolerable for staff. Yet the same conditions apply in other parts of A&E. So it has to be about management. Perhaps 2B was better than being on a trolley in the corridor but at least there, another patient might report any obvious distress… I honestly felt I could have died there and no one would have noticed.

A cancer patient waits for cancer specialists… and waits and waits

On admission, I was seen by the acute medical team, which is how the system works here: oncology have to be called in specifically. This is despite the fact I’ve been having chemo with expected and unexpected complications since December - it felt clear to me (and the regular chemo nurse manager who I was in touch with, in another hospital) that this lung problem might well be a reaction to chemo, more likely, my immune system attacking my lungs due to the immunotherapy that already turned my body against my colon.

Three other possibilities were also in the mix - a response to the blood transfusion I’d had to correct chemo-induced anaemia, a clot in the lung OR a rare infection taking hold because of my chemo-compromised immune system. I saw some great doctors focused on infection and respiratory diseases.

Yet despite asking continually, I didn’t see anyone from oncology for nearly 48 hours. And the treatment that worked the previous time for my colitis - IV steroids - didn’t start until the Friday morning.

What it cost me

In the intervening days, my lungs went from showing some stress during an x-ray on admission, to exhibiting lots of serious changes by the time I had a CT on Thursday (delayed, I was told, while they waited to get the go-ahead from oncology that it was OK to do, given how many scans/radiation cancer diagnosis involves - I don’t know if that was true but a consultant told me this).

Look, I’m a well-informed and probably highly annoying patient - I have a partner who was also pushing for me and others advocating. Yet during the delay, I was getting worse - after settling on admission, and having antibiotics (a very valid response given the questions around infection), I went from being able to stagger to the loo without oxygen to feeling I’d collapse just using a commode while attached to 4 litres of oxygen.

Final diagnosis and treatment

On Thursday, I finally saw a kind, knowledgeable oncologist - apparently they hadn’t known I was in the hospital until that morning. I started oral steroids and on Friday I started the much stronger IV/drip steroids. By that evening I could walk a little further with oxygen. In Saturday, I woke up reborn. By Sunday I was off oxygen entirely.

Bear in mind I stopped taking pembrolizumab in March, after just three doses. But I could still have this autoimmune attack for three more years, to any part of the body.

Like many people, when I heard about immunotherapy, it sounded gentler and almost holistic. I’m not complaining. I was absolutely warned fully about the risks, but when someone says it can improve survival rates for an aggressive disease by up to 8%, you take it!

Steroids suppress the autoimmune reaction. But they aren’t long-term options because they turn me into a moon-faced maniac with crumbly bones and a feeble immune system. So we’ll be aiming to wean me off ASAP - last out-patient drip tomorrow, then pills.

The power of daylight

When I was finally moved from 2B to the busy AMU ward, I think I’d been in the limbo for 36 hours. I was losing any sense of time. There wasn’t much daylight on the new ward but just enough if I craned my neck to see if it was day or night, though I missed several storms. But from the first HCA who said hello - Tasha, you’re an angel - I felt hope again. I think you can see the relief in my eyes…

There was food, blankets, portable oxygen to help me get to the toilet, towels (though I couldn’t consider a shower until Saturday). Did I mention daylight?

Bad ice cream

So on Saturday, I wanted to shower (top tip: having a little bottle of my favourite shower gel restored me almost as much as the drugs), I wanted to walk, I wanted to eat. The freshly cooked hot food tasted Michelin Star level - the prepared stuff was dodgier. Look at the ingredients for this ice cream: suitable for vegetarians but I am not convinced about humans.

Trauma and green shoots

If you’ve got this far, thank you. This post is more for myself than readers because I needed to get it down. What I experienced is pretty minor compared to many, many patients - I am alive, I got the treatment I needed, my body is strong. But acknowledging how scary it was for me helps. Maybe I can forget a lot of this now.

Maybe that’s a slight exaggeration. After my third EC (the chemo I decided to call the Scarlet Saviour), I did feel I was heading towards my physical limit: dog-tired, indigestion ramped up so badly I couldn’t bear to eat, and eventually unable to walk more than about three stairs without needing a rest.

Considering I was still trying to restart Couch to 5k training runs a few weeks ago, this was disheartening. But everyone says that the last chemo rounds are an uphill struggle and this was dose 15 out of 16. Plus I’ve been anaemic since March which makes you feel you’re walking through dulce de leche.

The Red Angel

Luckily, the medics had the answer - two ‘bottles of red’, aka two units of red blood cells. More than enough to give me the energy to survive the final chemo and then set me up for surgery to finally remove my tumour.

So last Tuesday, I settled into the infusion chair for the ‘red angel’. Blimey, blood transfusions are red! My favourite colour.

But as you can probably see from my fixed grin, I was really at my lowest ebb. My poor immune system isn’t what it used to be and I’ve had a cough lingering since Easter, which seemed to be mounting a fresh attack. Even as the red elixir poured into my thirsty veins, I wasn’t experiencing the Duracell Bunny surge I’d been expecting…

When the transfusion was finished, I didn’t bounce out so much as hobble. My cough was so bad I felt like I might turn inside out. Back home, I fell into bed.

When I woke up two hours later I was running hotter than a kettle.

Oh and I couldn’t breathe.

999, what’s your emergency?

I’ve never called an ambulance for myself before. But this was the most terrifying thing I’d experienced directly. It felt like someone had enclosed my lungs in a metal vice and all I had was the oxygen I could get from above my collarbone. The ear thermometer glowed full-on blood transfusion crimson, but we assumed something was wrong with it.

The ambulance team were there in 15 minutes and decided that in fact the ear thermometer was spot on. 39.8. And they stuck me on oxygen for the first time in my life. I could breathe — but not on my own.

I’d taken breathing for granted. We do, right? Until we can’t.

That was Tuesday around 8.30pm. I’m writing this on Monday at 8.30am and still in hospital. But, since Saturday, I’ve been feeling better.

My body gave me excellent advance warning that things were going downhill. From the first chest ray I had around admission, to a CT scan 48 hours later, my lungs had gone from looking all right to having the ‘ground glass’ appearance that doctors really don’t like.

Animal, vegetable, mineral… or fungus?

They do however get quite excited by the ideas of ‘atypical’ infection of the kind that only the immuno-compromised will give house-room (lung-room?) to. As an aside, sadly I’m not immuno-compromised enough to get a room away from everyone else that’s poorly, and have had roughly 8 hours sleep in the last four nights.

Back to House MD, Brighton version, and the doctors were pitching possibilities like a medical Dragon’s Den. The specialist mentioned a fungus at one point and I started getting serious Last of Us vibes.

But… as it turns out, an underactive immune system may be the ‘last of’ my problems… watch this space.

The main thing for now is that I am well enough to blog, to be jumpy and desperate to get home and get some rest. I’ve gone needing 4l oxygen to none. The bogies two oxygen probes can generate are truly impressive! And I have hung onto my earrings and nail varnish and drawn on fresh brows.

The rarity of fresh starts

These have been terrifying days. But oh! the simple ecstasy now every time I take a deep breath and feel my body respond to the glorious air.

To be continued…

But novelists, journalists and speechwriters are always in search of “good copy” - pieces of work that feel fresh, interesting and take the reader somewhere. We like a beginning, a middle and especially, a strong ending. There are few things as unsatisfying as a book with a disappointing ending, or no discernible ending at all.

Writing this blog is therapy for me, because it encourages me to ask questions about treatment, and to answer them: for myself first and then for you.

• I start with a big event (the beginning: diagnosis, first chemo, a scan).

• explore what happened next (the middle)

• and round off with conclusions about what it might mean and how I’ve decided to deal with it.

This simple structure is one of the reasons we enjoy reading novels, watching drama or documentaries, listening to podcasts. The best writers make meaning from chaos.

Plus, mostly in our daily lives we mostly don’t take big decisions or steps. We do whatever we can to avoid them. It’s only in fiction, journalism and 24-carat personal crises that we’re forced to dig for gold.

This weekend, in the middle of another steroid low (I hope the penultimate), my partner did gently encourage me to be more honest with people, in writing and in person, about how grim this feels a lot of the time.

And I realised that what stops me isn’t only the convention that says we should always answer ‘fine’ to the question ‘how are you doing?’

It’s also that I’m addicted to good copy.

Painting on a face

Even right now, the training I started as a junior reporter is kicking in as I think - OK, what’s my angle here? What makes this more than a moan that no one would waste their time reading? And I look at my drawn-on eyebrows and I think, yeah, those are a good metaphor - I’m literally and emotionally creating a distraction from reality.

Let’s stick with that for now: I took before-and-after photos the other day (another journalism cliché) because my morning routine got a lot more complex since the eyebrows went MIA. It’s not just about drawing them on for the first time in my life - I’ve always been gifted with unnaturally dark and rather impressive brows.

It’s also about priming around my eyes so that when moisture — not necessarily tears — spills over my lash less sockets, the carefully applied eyeliner doesn’t wash away immediately. And then I do the same around my nose, concealing the red bits from where it runs, with a dab of primer to keep that in place.

I don’t have to do any of this, I know. But I find it satisfying and I look more like myself after I have. And after my wig discussions last time around, you’ll know I reckon ‘you do you’ is important right now.

So I took 3 shots: the outward facing me, the products it involves to achieve that and a bare-faced shot of me before I get to work.

Actually, I couldn’t bear to post the final one because I look exactly like my mother did before she died. So I’ve cropped another manic one to show you the brow challenge without the pallor.

Arguably, I should give you the full, deathly version — to show other cancer patients that even when treatment does this to you, you do survive. To be open.

But also: it would be good copy.

When cancer and good copy are at odds

What I maybe haven’t been honest about so far is how often feelings and experiences lack the neat ribbon, the cookie cutter homily, the interesting question to ponder.

This stuff gets harder as treatment progresses. The fatigue isn’t only physical: you get tired of having cancer, tired of wrestling difficult questions, tired of the unknowns, tired of trying to look for positives. Today I am 6 days post chemo 15, my immune system is struggling, the rain hasn’t stopped outside, and I even hit a blood vessel for the first time up my self-administered tummy injection.

So it’s natural that right now the bad thoughts are winning:

• I don’t know why I got cancer, and especially why I got this mutant, deviant version of breast cancer that behaves so much less predictably than the others;

• I don’t know why I got it;

• I don’t know how well the chemo, surgery and radiotherapy will work and neither do my doctors;

• I don’t know if it’ll come back but I know if I had a different version, things would be much clearer;

• I don’t know if I’ll ever feel the same way about life - actually, I’m pretty certain I won’t;

• I do feel let down by a few people (if you’re reading this, it’s not you);

• I’m disappointed in myself, too. I hoped I would still be running 5k, and also going to wild parties in a decadent fin de siècle way (I never went to wild parties much before, tbh);

• I usually feel physically rough. I’d describe myself in hospital press report terms: ‘as well as can be expected’, considering I haven’t had a day of feeling 100% since chemo started on 23 December 2024. It is the hardest thing I’ve ever been through, physically. That doesn’t mean it’s undoable or that you will face the same. But it’s the relentless that gets you;

• I am terrified of surgery for multiple reasons, even though currently I don’t have a particularly invasive op planned. Oh and I’m terrified of radiotherapy too but that’s further ahead so I can back-burner those fears;

• I’m really scared that if it comes back I’ll have to do chemo again and I don’t think I could bear it;

• I don’t know if allowing myself to think about the bad stuff is going to make me more likely to get sick again (I doubt it, but the whole Positive Vibes Only theme around cancer is as prevalent as the ‘it’s all down to sugar’ advice that I can also live without);

• I don’t know if this will kill me, but I do know I’m not ready for it to. That, I guess, is what most of the above ultimately comes down to.

If I wrote this tomorrow, it’d be different. More positive, neater. Today’s version is unsatisfying and open-ended, but at least you did get a makeover and tips to follow. Is this good or bad copy?

I don’t think it’s either. But it is honest.

PS: the all-important make-up tips:

You don’t need all of these, but the ones I’d highlight are a mix of budget and spendy and almost all ones I had already except the two I’ve linked to, both of which are great value: Rimmel Tattoo Liner (for inside and outside the waterline: also love the Daniel Sandler Waterproof Velvet and the No 7 Stay Perfect); e.l.f. Lock It Down Eyeshadow Primer, Benefit Goof Proof brow pencil with little brush (pricy but excellent for power-brows); Boldify hair fibres for instantly enhancing and colouring the grey wires I used to call hair, Beauty Pie Superluminous Light/Medium for under eyes, Paw Paw lip balm, Charlotte Tilbury Unreal Skin Sheer Glow Tint.

The EC treatment has been harsh on my hair, as I feared it might be, and as I got ready to go to the very brilliant Beyond the Book festival in Brighton, I felt horribly self-conscious about the ratty bits that didn’t disguise the increasing expanse of baldness.

So I nabbed my Annabelle’s wig - the ‘Siren’, no less. Without thinking any further, popped it on (same technique as for my self-administered tummy injections — she who hesitates makes a massive meal out of it).

Well, hello there!

Blimey! The old me was back, in the mirror. Not simply the old me pre-chemo, but a bit like the bobbed-BBC-Education-Correspondent-me circa 1999 (let’s ignore feeling bad about my neck, Nora Ephron–style — there’s no wig for that).

The ‘hair’ was extremely shiny, but the copper shade put colour back in my cheeks and the length was ideal for a hot day.

And off I went to face the world. It was the ideal try-out. I was with author friends who were delighted I’d made it, and I even had a perfect colour match with the wonderful Araminta Hall.

I did go a bit selfie-mad — not to mention hyper. Chemo isolation messes with your social skills and rewires your sense of appropriate topics of conversation. So apologies to all those I bombarded with excitement-fuelled, unsolicited updates.

The wig, though. I adore it.

But on the bus home (masked up — those neutrophils are struggling), it got me thinking about why I was so resistant to putting the wig on before now. And what fake vs. real means when it comes to our appearance.

Why does real have such a hold? And why does faking bring shame?

Cancer treatment has a huge impact on identity — and as a woman whose hair and boobs have always been features I’ve been grateful for, this diagnosis is a double whammy. This new EC cocktail hasn’t just thinned my head hair — I can now count my remaining lashes and brow hairs and mourn each one’s passing.

I even photographed my last leg hair.

Of course, until now cold-capping has helped me hang onto ‘my’ hair, and that has brought me solace. It’s made me less panicky about answering the front door with a bald head. But what’s now there looks nothing like it did. The last strands dry and a random mix of colours (I’ll still miss it if it all goes).

Plus, the process of cold-capping has been uncomfortable, time-consuming, and added a lot of stress. As a bonus, I’m hoping it’s also protected my follicles from permanent damage, but my main, vain priority has been preserving the ‘real.’

There’s shame, too. When I started losing hair, and compared myself to cold-cappers who’ve hung onto 70% plus, I felt like a failure. There was an undercurrent of inadequacy, which I knew was illogical. But deep down, I feared I was somehow weaker or less worthy than those who’d been more successful.

What is natural anyway?

The more I think about this, the madder it seems. Does ‘natural’ mean never conditioning or using hairspray? Does real skin mean what you have. without the help of SPF or make-up? Are ‘fake’ boobs morally inferior to those untouched by plastic surgery — and if so, why? Are society’s rules different when the human-made boobs are post-mastectomy rather than for ‘vanity’ alone? Or maybe it’s nobody else’s bloody business?

Vanity itself is a moral minefield: we’re allowed to care ‘this much but no more.’ This definitely applies to older women. If we’re attractive, we’re expected to be humble, and women after menopause must somehow juggle ‘looking younger’ without admitting to the effort it takes — or risking that terrible judgement of ‘mutton dressed as lamb.’

There’s a lot about trickery, too: disgruntled gags from male comedians about undressing a busty woman to find her cleavage enhanced by chicken fillets. And women perpetuate it — I know one who still wakes up early to reapply make-up before going back to bed so their partners never see their bare faces.

I’m not putting the blame on anyone. There’s a massive industry here that relies on us spending money on making ourselves look ‘better’ while simultaneously mocking anyone who goes too far.

When your ‘authentic’ self ain’t pretty

Wiser people than me have analysed this far better. I am just writing from the identity trenches, where treatment has aged me, denuded me, turned my eyes rabbit-pink and my nose runny, and made my own reflection a source of bafflement.

But this now is my ‘authentic’ self, right? Given how much we talk about authenticity these days, what does that actually mean when it comes to our appearance?

My authentic appearance right now doesn’t reflect how I feel inside. I’ve aged a lot, and the edges have blurred. So I keep putting on the eyeliner and the wig. I also don’t want people to stare at me — with sympathy or otherwise. Some days it’ll take all the effort just to ‘pass.’

But part of me wishes I could feel more comfortable with the authentic, sick-looking me. That I could reject society’s expectations, or the need to attempt ‘prettiness.’ I admire patients who brave a bald head (with sunscreen, please).

And maybe I could be ‘embracing an important life lesson’ — albeit one that a woman in her fifties should probably have grasped decades ago.

BUT WHAT THE HELL IS THAT LESSON?

Ask what makes YOU feel good

My personal attempt to answer that has two parts:

1. Work out which parts of our identity and appearance make us feel good — and do what the hell we want to nurture them!

2. Use that insight to be less judgemental of other people’s choices — because it’s nothing to do with us.

I’m going to try both. What do you think?

EC - the chemo whose nickname I don’t say out loud - wasn’t too awful to begin with. The experiences I’d heard from others went like this: the treatment knocks you out for a week, then you have a week where you’re getting stronger, and the final 7 days are pretty good.

And on Day 22, you have your next dose.

It hasn’t been like that for me, alas. For at least half the time, I’ve really wanted to throw in the towel through overwhelming fatigue and constant heartburn and indigestion. The desire to give up coincided with the London Marathon - and having previously described my chemo as the equivalent of a long-distance run, this has been my version of Hitting the Wall.

Mind over matter

Feeling anxious at home is manageable. But now I’ve started feeling emotionally fragile every time I go to the chemo unit. Which didn’t seem logical when I first realised it was happening. Nothing painful actually happens there, unless you count the cold cap. Everyone is kind and attentive.

But here’s the thing: human brains are brilliant at spotting patterns, and my subconscious has worked out what my conscious mind has known all along - that every time they give me an infusion, I will feel terrible for days, if not weeks afterwards.

Yes, it’s for the greater good. And yes, I have tried hard to see the chemo as something advanced and lifesaving that I am lucky to receive. To visualise it as an elixir, to make up crazy and funny stories about each medicine to neutralise the fear.

But my subconscious doesn’t buy any of that. And it no longer wants to be ignored. The terror I’ve been feeling lately comes directly from my primitive brain. It wants me to do the ‘sensible’ thing and just avoid the chemo unit for all eternity.

At first, I was just snappy as my partner drove me to appointments. But last week, I couldn’t stop crying when I went in for simple, painless blood tests. And I had to admit to myself how close I was to giving up.

The last cancer taboo?

The thought had started as a mischievous whisper in my mind since preparing to switch treatments. Now it was a deafening shout:

WHAT IF YOU STOP CHEMO NOW?

I needed to understand what it would mean and how others had reached that decision. There is NO shortage of information online about cancer - so my default is to search, but carefully, ignoring out-of-date information, and quacks. Forums and Facebook groups are a brilliant resource here, with almost endless, patient-focused information and sharing.

Yet when I searched for ‘giving up chemo early’ and ‘when to decide you’ve had enough of chemo,?’ all I found were a few results focusing on people with end stage disease who didn’t want treatment with little possible benefit,

And I wondered: is this the last cancer taboo: the idea we might reject treatment that could save our lives, for trivial reasons like ‘I can’t face doing any more’?

It relates to how invested we are in the image of the ‘courageous warrior.’ We know chemo must be an ordeal, so we choose to see the people who need to undergo it as special and brave. The religious version I’ve seen in some forums is ‘God never gives you more than you can handle’.

But I am not brave, nor a warrior. And right now, this feels like way more than I can handle. I haven’t felt truly well now since the 23 December (and the previous 8 weeks, I didn’t sleep properly and was already a changed person because of the biopsy, the wait for results , the diagnosis and the preparation for treatment).

I will own up to ‘being stoical’ - some of the time. And that involves doing my best to plan and prepare and be in the best shape to undergo this.

But the parts of my brain I can’t control aren’t interested in faking bravery. The amygdala, which responds to perceived danger, has been screaming at me for six months to run away from anything medical.

Still think I’m brave and heroic? You’d better look elsewhere for your inspo porn this week. I won’t post a picture of myself after hours of sobbing because that wouldn’t inspire anyone.

Thinking the unthinkable - and admitting to it

The idea of stopping chemo early felt unthinkable but also so tempting.

And as I sobbed into the shoulders of more than one nurse, I also admitted to my thoughts. It’s a devil or the deep blue sea dilemma - try to force myself to undergo another 9 weeks of feeling this way, or ignore the doctors’ advice and refuse the chemo that might potentially kill off my very aggressive cells. It seems like the wimp’s way out, and one that I will might forever if - like one in four women diagnosed with triple negative - the cancer returns in the next five years.

The manager of the chemo unit - and source of all wisdom - let me talk about it. That took away some of the shame. She also said many people stop much sooner than I have, especially after the reaction I had to immunotherapy. It is an option. It’s not a crime to be unable to handle any more.

And once my feelings were out there, help came. I spoke to my GP and have sleeping pills for when the tiredness is too much. I had an ultrasound scan which didn’t show what I’d hoped for - my underarm lump is still there and hasn’t shrunk much over the last 4 treatments - but at least it hasn’t grown, and I know what’s what.

Friends have listened and not tried to talk me into or out of anything. That’s not easy, I’m sure. But I love them for it.

And I got my appointment with the consultant brought forward a few days. He addressed my concerns, said if stopping was my choice, of course that was OK, But he then explained why he’d like me to at least try one more dose of EC. He’d already reduced the dose to 80% of what I had last time and explained - as he has before - that it doesn’t mean it’s going to be less effective, it’s about working out what my body can take. He quoted the old medical saying….

The other reason he encouraged me to have treatment 14/Cycle 6 is that many clinical trials require that a patient has done at least 6 cycles of chemo before being eligible for new treatments. So if my surgery later this year shows residual cancer despite throwing the chemo medicine chest at it, I will almost certainly need other drugs as well as radiotherapy, and one more round will buy me an extra ticket in the triple negative lottery…

Reader, I said yes.

So today I’m having my second EC. Along with all the preventative drugs - including pills to calm down my subconscious to try to ensure it doesn’t make me sick before any chemo even goes in (this is not uncommon - the power of the mind, eh?)

PS: my chipmunk/halloumi cheeks have done down now so that’s one positive.

Being a difficult patient

I’ve felt like a difficult and troublesome patient with my endless dramas, my ever-expanding list of symptoms and my tears and traumas. It feels more embarrassing when I think about how much other patients endure, especially those with more severe disease. But this week especially I needed more resources.

Oncology doctors, nurses, pharmacists and support staff need a rare mixture of scientific precision and emotional intelligence, to cope with advances in treatment that run alongside the visceral, existential fears that come with a cancer diagnosis.

And while I’m sure none of them find it enjoyable to deal with a snotty-nosed, panicking me, I can see it would be satisfying to help a patient make the right decision for them.

I met another Brighton author yesterday who has gone through extensive treatment and come out the other side. Josie Lloyd aka Jo Rees (who wrote The Cancer Ladies’ Running Club, an uplifting and funny novel that proves recovery is the norm for cancer patients) . It gave me a huge boost to be able to discuss it honestly, and we talked about the warning you get at the start that effects will be ‘cumulative’.

When they tell you that, it’s not possible to imagine what that means. I saw mid-chemo me as bald, pale, broken. But the reality is different to the cliché.

The psychological and physical impact of the constant drugs, tests, hyper-vigilance and self-monitoring creep up on you. Some days you do feel broken. Others cheerful. And occasionally, you’re full-on furious.

What Jo also emphasised is how we need to be kind to ourselves. So I am going to remind myself that I’m doing my very best, that this stuff is rough, that shame and guilt don’t help, and that ultimately I know myself.

Thanks, Dexamethasone. You’ve given me insomnia, but also a flashback to a particularly annoying 80s kids’ TV show.

If you’re fortunate enough not to remember The Wide Awake Club, the jingle went: it’s good to know you’re ready and you’re WIDE AWAKE. Even the graphics are triggering me right now… because I’ve spent far too long this last week WIDE AWAKE at 3am.

But on the plus side, I’m now seven days since my first dose of EC1, aka the Scarlet Saviour, and I’ve had fewer side effects than I’d feared. It’s mostly been about being either Timmy-Mallett2 level wide-awake (from the steroids), or dormouse-drowsy (my body using all spare energy to dispel chemo).

For the first time since starting treatment, I used the tool I’ve relied on since 2012: fasting. Research suggests that restricting food the day before and on the day of chemo can reduce fatigue and nausea. But it’s not straightforward: my digestion isn’t in the best shape, plus some of the drugs that stop chemo reactions should be taken after food.

After checking with my consultant3, I decided to eat very little over those two days.

My aim was to try to put my body’s healthy cells into a dormant (dormouse?) state by reducing food intake, while leaving an open goal for the intentionally toxic chemo to attack cancer cells. In addition, the less food I took in, the less my digestion might be upset by the drugs.

I did discover I’m less able to fast completely then I was before, because of heartburn - but small snacks of crackers, bread sticks and some sugar-free sweets definitely helped. The strategy certainly made me feel more in control (yes, Claire, that one’s for you). I can’t say this has been a brilliant week, and my tastebuds aren’t behaving, but overall, it’s been better than I feared.

One dose down, three to go…

The insomnia game

Let’s return to the 3am club and boy, it’s one lonely joint. Previously, when I’ve been the person waiting in A&E or ICU family rooms for news of loved ones , 5am was the worst time. But that was in winter, when the darkness was so profound and the uncertainty even more so.

This time, my mood is different. It’s nervier and more active, thanks to steroids. And 3am is when I always seem to wake up.

What do you do when you can’t sleep? I often start off doing all the ‘right’ things but progressively veer off course. Here’s my rough journey from coping to, um, not.

1. During Phase 1 aka Sleep Hygiene Goody-Two-Shoes, I try Calm’s sleep meditations, plus audiobooks which sometimes send me to sleep (having finished The Wedding People which was utterly brilliant, I moved onto Maurice and Maralyn - but perhaps a midnight mid-ocean collision with a whale isn’t conducive to restful sleep. Who knew?).

2. By Phase 2 aka Scrolling Hurts No-one… sees some of the rules go out the window. I stop trying to resist the lure of the screen. I might begin with Substack and newspaper features (I’m way too raw for the news right now). But soon I’m giving into the full tappy-tappy of Lily’s Garden (not the relaxing bits, the flashing neuron-firing game rounds). All under the duvet until my phone or brain overheats.

3. Phase 3 aka I’ll Sleep When I’m Dead Which Might Be Soon: overheated and utterly awake, I admit defeat by moving to the spare room (I am so lucky we moved house before I got ill, so I have this option). I promise myself I’ll do Duolingo but usually end up doom-scrolling (sometimes even haunting cancer forums) till my eyes stop working…

Pull up a chair…

This week, something’s shifted. It kicked off with morbid thoughts, which wasn’t a promising start. But bear with me…

My 3am thoughts turned to two writing mentors, both lost too soon due to cancer. The irrepressible Crysse Morrison was an icon in the lovely Somerset town of Frome. She worked with me on my first longer piece of fiction (thankfully unpublished: despite being based on a real-life experience of dating a liar with a double-life, I could never quite make it believable) and celebrated when I was finally published.

And then I remembered Clare Boylan, a generous and tremendously witty Irish author I met in Thailand. It was my first solo long-haul travel experience - after I took redundancy from the BBC, I went on a Skyros writing course on the Thai island of Koh Samed. As we sipped sundowners and fed the mosquitos, Clare made me believe I could write.

Both women dazzled. Both died too young. When I looked it up - yes, 3am obituary reading is another bad habit - I realised Clare was a year older than I am now, when she died from ovarian cancer.

What is clearer to me in the day is that this isn’t morbid. Those women inspired me then and they are inspiring me now, too.

Both were older than me when I met them, and represented the kind of woman I wanted to be: outspoken, brave, confident. I don’t think I’ve qualified 100% for those adjectives myself yet - I am still a little too tentative and careful at times - but if not now, then when?

I don’t know if they were ‘brave’ in the face of cancer because I’m not even sure what that means. But I sense that they both would have squeezed the most out of the days and hours and minutes they had.

And the next night, I allowed some other women to join me at the 3am club.

A sweet sherry, a Snowball & a Gordon’s with bitter lemon

My mother, aunt and grandmother never travelled beyond Europe, but this week, I welcomed them to my Thai table, to enjoy their favourite tipples. Their voices seem both fainter and stronger to me: it’s seven, 16 and 29 years respectively since I lost them.

I’ve recently started writing some fiction inspired by their early lives and it’s another conduit to who they were and what we shared.

My relationship with my grandmother was the purest. She was a strong, tiny woman and everything about her felt safe. My aunt was a musical prodigy, vulnerable yet inspiring. And my mother loved her two daughters, and books, except when she couldn’t. It’s taken me a long time to understand and process the second part of that sentence. But I think I am there now and it’s a huge comfort.

I remember when my mum was in pain, she called out for her mummy and at the time it surprised me, though it shouldn’t have. Perhaps we all want our mums in our loneliest hours. Perhaps that’s why she’s present now.

And, because nothing comes from nowhere, it can’t be a coincidence that today would have been my parents’ wedding anniversary. When I went through their many boxes of stuff after they died, I found their very long-buried wedding film and edited it down to less than a minute of 1960s retro bliss. It was quite the society do, in its day (my grandmother is in blue). So I’m sharing it now… it looks like the most beautiful day.