Beverley (aka The Wig) has had a hair cut. She’s gone from long and glam to an angled bob; what’s she’s lost in length, she’s gained in style.
I took her to Andrea’s Hairoom, run by Andrea Long – a hair loss specialist with an extraordinary talent for matching heads to hair. I went in feeling self-conscious in a scalp-covering headband, and came out wearing a swishy blunt-cut wig that actually feels like my own hair. Only better.
She also gave me the confidence to go and get my own multi-length, patchy, post-chemo hair cut at the hairdresser (“it will look immediately thicker”) so I now have a boyish crop which is a zillion times better than my messy bandana/toddler ponytail look of old.
I have a wedding to go to tomorrow, an occasion I’ve been looking forward to for months but didn’t know whether I’d be well enough to attend. I can’t guarantee that I’ll be able to stay awake past 9pm or sustain much of a conversation, but I do know that – with or without Bev – I’ll give it a good go.
I didn’t ring the bell. When it came to ‘the moment’, I felt too self-conscious.
So instead I got the radiographer to take this classic ‘thumbs up’ posed photo and went to John Lewis to buy an over-priced Neom candle (scented to ‘de-stress’) and ate a rather soggy Pret sandwich (crayfish & avocado since you ask).
There’s a bell fixed to the wall of the radiotherapy reception, in front of a painted rainbow. It’s for patients to ring when they finish their last radiotherapy treatment; mine is tomorrow. When you shake the bell, and its chimes ring out across the department, fellow patients look up from their dog-eared magazines (Countrylife/Chat/Bella circa March 2012) and clap and smile. There’s a sense of “we’re all in this together” and an anticipation of a time in the future when they will get to ring the bell too. But I don’t know whether I should do it.
You see, the end of radiotherapy is not the end of treatment: I will continue to have Herceptin injections every three weeks until January; will be starting on the dreaded Tamoxifen which will bring its own set of early menopause-related symptoms; and will need further surgery to remove the port from my expander implant. And then there are the psychological after-effects of treatment – the anxiety, the dread, the fear of every ache and pain that might signal a return of the disease – and I know from experience that these take much longer to subside than the fatigue and the general malaise of cancer treatment.
Also, I wonder if ringing the bell is disrespectful to patients waiting in the reception queue for treatment that will never end; for the metastatic cancer patients who will have endure radiotherapy and chemotherapy and other drugs for the rest of their days. Do they want to stop and cheer for someone who gets to finish treatment?
But then I wonder whether I am (as ever) over-thinking things. Perhaps a more optimistic, hopeful person might see ringing the bell more simply: the marking of the end of one part of treatment; the beginning of another phase.
I woke up this morning on the wrong side of the bed. Maybe it was the thought of two hospital visits in one day (radiotherapy and prosthetics); maybe I was still fed up after discovering I could no longer squeeze my squidgy bum-and-tum into any of the dresses I’d been hoping to wear to a wedding next month; maybe I’m just bone-tired after months and months of treatment and hair loss and nausea and anxiety, aka Cancer Crap.
Whatever the reason, by the time I’d lain down on the radiotherapy bed – fake, lumpy boob exposed to the chilly room, prodded and pulled into position, dots drawn on with a black market pen – I was crying. Not wailing or sobbing. Just silent tears. Rolling down the side of my face. And because I was being zapped with high-energy X-rays beams, I could neither move, nor stop the tears, so they just kept pouring down my face and pooling in my ears. I’ve never had ears full of tears before. It tickles. Not in a good way.
The radiographer had to come in twice during treatment to reposition the machine and didn’t mention the tears, which I’m grateful for because the worst thing anyone can do when you’re trying not to cry is to draw attention to it. Although a tissue would have been helpful.
I know that I am lucky in so many ways – I have a supportive family, free NHS treatment, and an understanding employer. I know there are thousands of women with breast cancer in much worse situations. And most days I can hold my head up high and turn up for treatment, and feel grateful and positive and thankful and all that stuff that we cancer patients are ‘supposed’ to do.
But other days I have leaky eyes. And there is absolutely nothing I can do about it.
So it turns out I was a little cocky about radiotherapy. A bit, “Meh, it’ll be fine, after chemo I’ll breeze through it…” And I did for the first couple of days. Sure, it’s dull and boring going into hospital every day, finding a parking spot (inevitably on level 3 or above), waiting for the lift to arrive, waiting in the reception queue to check in, waiting to be called, waiting in your gown for the machine to be free… But I felt well enough in the afternoon to go to physiotherapy as usual, referee the kids’ school holiday dramas, cook dinner etc etc.
However, by the weekend I was convinced I was coming down with the flu – achey limbs, shivers and hot flushes (nothing new there), and the overwhelming feeling of walking through treacle.
On Monday, I was so exhausted after two visits to the hospital – for radiotherapy and oncology clinic – that I was struggling to stand up without feeling dizzy so I went to lie down in bed. Which is when I started having chest pains and feeling sick. So of course I did what any cancer-ridden hypochondriac does in times of crisis and consulted Dr Google. My symptoms – sweating, chest pains, feeling sick and panicky – pretty much confirmed a heart attack was imminent, so without mentioning anything to Pete (who was busy wrangling kids and making tea) I took myself off to the GP. And for probably the first time ever, I was able to get in last-minute to see the doctor (hysterical woman on verge of tears can get you past the receptionist, it seems) who confirmed that I was not having a heart attack but was probably a bit overwrought, stressed out and knackered (that’s the medical term). Either that, or I had the failsafe GP diagnosis: a virus.
In my defence, one of the possible side effects of one of the drugs I’m on – herceptin – is damage to the heart, so my rushed self-diagnosis wasn’t totally off the wall. Plus, when you’ve already had two cancer diagnoses, you tend to gravitate automatically to the worst possible scenario, i.e. I do not want to have gone through all this shit just to die of a heart attack. So I am grateful to the GP for saving me an excruciatingly embarrassing trip to A&E which would have resulted in the diagnosis: Drama Queen/Time Waster.
So the moral of this story is: Don’t think you can skip your way through radiotherapy. Side effects cannot be avoided by willpower. Accept that you need to rest. And stop it with the Dr Google consultations.
I was nervous about starting radiotherapy. I didn’t have it with Cancer Number One, so it’s the fear of the unknown. But I needn’t have worried; the most stressful part of the day was getting to hospital (prosthetic limb fail, kids’ packed lunch prep, multi-storey carpark packed to the rafters – the usual).
The radiographers on the unit were absolutely lovely and quickly put me at ease, explaining the procedure, and apart from lying still on a cold, hard bed with your boob out while two people pull you into position, measure your chest with a ruler, and mark you with a black pen, the procedure is painless.
However, I expect I will not be feeling quite as chipper when I’ve repeated this process every day for the next 15 days (bar the weekends).
And the worst part of the whole thing? I can’t wear deodorant, or a bra, or shave my armpit for the duration of treatment AND TWO WEEKS AFTERWARDS.
When I was diagnosed with my first cancer at 26, I felt completely alone. I didn’t have any friends who were going through the same experience and I felt cut off, isolated and afraid: their lives continued in a whirl of work and travel and socialising whilst I battled limb loss and depression and anxiety. Friends visited and talked about parties and beaches and boyfriend dramas, and they would ask about me, and I would hold back – because the furthest I’d travelled was the chemotherapy ward, and the only reason for being up all night was the insomnia and the nausea and the pain. And who wants to hear about that? So I was alone, through my own making, because I cut myself off from friends who wanted to help because I thought they couldn’t, and wouldn’t, understand.
But now? Now I’m not alone. And that’s almost more frightening. I know too many women with breast cancer. And these are young women. Women who have jobs and children and caring responsibilities for elderly parents. There’s my ‘chemo buddy’ Vicki who has three children and has been valiantly holding down a job whilst going through chemotherapy; there’s the mum from school I bumped into at the breast clinic who – unbeknownst to me – already had a year of treatment behind her. There are hundreds of women on the Younger Breast Cancer Network on Facebook – their timeline filled with single mums suffering chemo side effects without the luxury of childcare, and the bewildered newly-diagnosed asking for advice.
And yesterday, a good friend I’ve known for years and years – someone I don’t see very often because we are geographically far apart, but love dearly – told me that she has been diagnosed with breast cancer too. Another young woman, mum, wife, colleague, sister, daughter, friend. And it breaks my heart. Because I am no longer a massively unlucky anomaly; I am the norm. One of many. Too many.
So I say to my lovely friend: I am so sorry you have become a member of the club that no-one wants to join. But you are not alone. We’ve got you.
For the past five years, cycling has been a massive part of my life: inspired by the London Paralympics to ‘give it a go’, it soon grew from a hobby into a sport and then an obsession. My dreams of competing at Rio may have ended prematurely, after a stint on the GB development squad, but my love of the sport – and the freedom, fitness (and cafe stops) it brought was relentless.
But cancer has robbed me of that enjoyment this year. I’ve simply been too ill and exhausted to ride. Sure, I’ve been on the indoor turbo trainer (watching my power numbers drop dramatically week-on-week) and I’ve pottered about with the kids on canal paths in-between chemo sessions, but I haven’t ventured out onto the roads because, frankly, I’ve been too scared.
You see, you need guts to ride a bike on the road. Especially when you’ve only got one leg and your balance is ‘off’. You need confidence and a dose of devil-may-care attitude to dodge the potholes and brave the drivers veering too close with a ‘punishment pass’. And having cancer has made me doubt myself in so many ways, including my ability on the bike. Being ill changes your mindset: instead of thinking, “Of course I won’t get knocked off my bike/it’s just a bit of rain/it’s not that windy”, you start worrying, “If anyone’s going to fall off it’ll be me/I could break my wrist again/an injury could jeopardise my treatment”. All of which explains why I’ve been trapped inside, sweating it out on the turbo, even as the sun shone outside.
But today, I went out for a ‘proper’ ride. I only managed 19 miles and I was absolutely knackered, and I didn’t get any Strava cups or PBs. I struggled up the hills and I fretted about my low average speed, but the sun was shining and the wind was in my face and the freewheeling downhill felt great. And I realised I need to stop comparing the condition I’m in now with the old me. It’s dispiriting to remember how 70-mile weekend rides felt easily achievable and power numbers were quadruple what they are now. And I know my fitness will soon be taking another hit, with fatigue-inducing radiotherapy.
But for now, there’s still joy to be found in a short and steady amble into the Yorkshire countryside, and new cafe stops to discover (see photo). So I’m turning off the Garmin and lifting my eyes to the road ahead. I’m starting again: Cycling Ground Zero.
I got my first tattoo today. I spent ages trying to decide whether to go for a butterfly on my shoulder, an ‘inspiring quote’ written in Latin down my arm, or the classic – LOVE/HATE across my knuckles. But in the end, the radiographer would only do me three tiny black dots on my chest. Spoilsport.
The tattoo dots will help the radiographers line me up precisely on the bed every time I have my radiotherapy treatment, to make sure the right bits are getting zapped. If you want a more technical explanation of how radiotherapy works click here.
Today’s appointment was a CT scan to plan my treatment, which will start in a couple of weeks.
I won’t getting another tattoo any time soon because, for the record, it HURT LIKE HELL Only for a couple of seconds, but still – OUCH!
It’s been an anxious two-week wait for the pathology results following surgery. The tissue that was removed during my mastectomy has been analysed in the lab, and the results give the oncologists more information about the type of tumour and how it was affected by the chemotherapy.
I think of it as a cancer crime scene: the tumour and chemotherapy leave a bloody trail of evidence that is picked apart by forensic experts. But possibly I’ve just watched too much Dexter/CSI/Silent Witness.
Anyway, yesterday I met with my surgeon for the unveiling of both the pathology results and my reconstructed boob. It was a big day.
So, boob first: surprisingly, the new fake boob (foob) looks almost exactly like the old one, thanks to a nipple-sparing reconstruction. But it’s almost completely numb. The sensation is similar to how your mouth feels after a trip to the dentist for a filling. But since the foob does nothing but sit in a bra all day and isn’t required to eat food or hold a conversation, this is manageable.
Pathology: I already knew from earlier biopsies that my tumour is ER/PR/HER2-positive, meaning I’ll need to continue with herceptin injections every three weeks until January, and will take Tamoxifen tablets for ten years. But the pathology also showed that the tumour has responded to chemotherapy, and there was only 4mm left – a sizeable reduction from the original 27mm. So the chemo misery of the past six months has been worth it. Yay!
However, without a complete response (i.e. all the tumour gone), I will now need radiotherapy. Bollocks.
Radiotherapy, the next step in this gruelling process, will start in 2-3 weeks. There really is no rest for the wicked. But despite this, Pete and I left the consultation room feeling relieved because “it could have been much worse”. And, as Pete pointed out, when being told you need radiotherapy passes as good news, you realise how relentlessly rubbish living in ‘cancer world’ can be.