Booby in a box

IMG_8981Given my current lop-sided status (pending further reconstructive surgery next year), I now have a new prosthesis: a booby in a box.

I say new prosthesis because booby-in-a-box joins the two more established members of the prosthetic community already taking up residence chez moi:

prosthetic leg (aka Peggy)

prosthetic hair (aka Beverley)

Hopefully, booby-in-a-box will, like Beverley, be temporary. But until then, please take a moment to appreciate the posh pink velvety cosmetic case in which she resides. I’m not sure why she appears so wrinkly – perhaps she is taking her cue from the septuagenarian peeking out from the pocket… (side question: why do post-surgery models always look so goddamn cheerful about lounging around in the most unsexy full-cup bras ever created? Also, where are the post-surgery bras that don’t make you feel geriatric and/or completely skint given their extortionate prices?)

Anyway, I’d better go and have a restorative ‘nanna nap’ before any more bits drop off…

Sal x

 

 

 

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We need research, not awareness

Pink-Ribbon2

I’m quite glad Pinktober – breast cancer awareness month – is over. Social media has been filled with an avalanche of pink: how to check your breasts; signs of breast cancer; warnings not to put off your mammogram etc etc. But how much more awareness do we actually need? Surely most women know you should check your breasts regularly for any changes?

I did. I checked. I found a lump. I went to the GP and got referred to the hospital. I got diagnosed with breast cancer.

But my awareness doesn’t change my chances of surviving the next five years. And my awareness didn’t help me avoid a harsh, gruelling treatment regimen.

But research might. New treatments might.

I think this concentration on awareness perpetuates the myth that all we have to do to survive breast cancer is to ‘catch it early’. But this only really applies to non-invasive cells found on mammogram routine screening. Mammograms are not offered to women under 50 years old, and anyway they aren’t as effective in detecting changes in younger women’s dense breast tissue.

Once you can feel a lump, the cancer cells have already become invasive and – even if they are small or slow-growing – there is always a chance that they have spread elsewhere in the body, to re-emerge months or years later. Even after chemotherapy and radiotherapy, which aim to ‘mop up’ rogue cells around the body, the risk remains. In my case there’s around 25-30% chance of the cancer spreading to another part of my body in the future (metastasizing).

And once the cancer is metastatic, or secondary, it is incurable. 11,400 people die in the UK from breast cancer every year.

So I, like the 55,000 other UK women diagnosed with invasive breast cancer every year,  walk around with this knowledge, and it’s really hard not to let the fear overwhelm you.

Pictures of healthy women flashing their cleavages in pink bras to ‘raise awareness’ don’t help. But a shift in focus towards putting research into secondary cancer at the forefront of the government’s and charities’ priorities might.

To mark the end of Pinktober – in recognition of those living with, and dying of, secondary breast cancer – and as a mark of hope, I’ve made a donation to Secondary1st .

Maybe you will too? xxx

 

Could an e-bike get me back into my beloved sport?

IMG_8600I’ve been sniffy about e-bikes before now. During my time with the GB cycling team,  I scoffed at able-bodied cyclists using  battery assistance to get up hills because I was training my one-legged body to climb, even when it was really, really hard. Sometimes, if I lost momentum trying to ascend a particular bugger of a climb (Holme Moss springs to mind) I would simply keel over with the effort and, having picked myself up off the road,  find it virtually impossible to get going again without a push-start from a friend. Next time you’re riding up a big hill, stop mid-way, and try to simultaneously push off, get clipped in, and start pedalling without involving the other leg and you will experience the difficulties of a one-legged hill-start. But still, I considered e-bikes ‘cheating’.

But now, in my post-chemo and radiotherapy state (i.e. knackered), and lacking both my former fitness and hubris, the e-bike is appealing.  I am currently far too slow to ride with my former club-mates at Garforth Velo, yet I lack the confidence to ride alone. I worry that if fatigue hits (and it does tend to ‘hit’, without warning, and requires instant sofa-time), I will be unable to get home.

I wanted to find out whether riding a bike with battery assistance could help me ride further and faster and inject a much-needed bit of fun back into my life. My friend Graham at Dave Rayner Cyclesport, who supported me throughout my competitive career, offered to lend me his Corratec e-bike for the weekend and so the experiment began.

The e-bike has four modes: eco, tour, sport and turbo, which give progressively greater assistance. With pedal-assist, the battery only kicks in when you pedal, and cuts out again when you reach 15mph – above that speed you’re travelling under your own steam.  Leaving my driveway, I put the bike straight into turbo mode and whipped up the hill so quickly I felt like I was riding a motorbike. I instantly started laughing – it felt so strange!

Back in eco mode, the assistance is minor – it feels as if it’s just compensating for the weight of the bike (a massive 24 kilos compared to my 10-kilo road bike), but you also get a greater range of miles – the display on the handlebars said I had 65 miles left in the tank, compared to around 25 in turbo. Since I was nervous about using up the battery too quickly, I decided to stay in eco mode for the first half of the ride. The upright handlebars forced me to sit up and enjoy the scenery, instead of staring at my Garmin data on the stem. I still got a bit of a sweat on up the hills, but I wasn’t out of breath so I didn’t notice my reduced fitness as much as usual.

The e-bike came into its own at junctions, which have always been extra-tricky for me as a one-legged rider. I have to wait for extra-big gaps in the traffic to make sure I can get out quickly enough. If I miss clipping into the pedals on the first attempt, I have to put my foot down and try again; it can be a bit nail-biting. But with the e-bike in turbo mode, as long as I hit the pedal somewhere, the battery kicked in and got me out of trouble. It made riding the roads feel a lot safer.

But most of all, the ride was just FUN, especially on the way back when I flicked between modes to see the full potential of the bike. The road on the way back to my house is a si-mile drag uphill: it’s tiring at the end of a long ride. But this time, I flew up it with a big smile on my face instead of a weary grimace.

Arriving home after 30 miles , I still had 16 miles left in the battery in turbo mode (36 in eco) and I felt good. My leg muscles were aching (but not too much), I was slightly out of breath and I’d enjoyed being back outside with the wind in my face. Looking at my stats on Strava (old habits die hard), I saw that I had a new PB for the uphill ride home in turbo mode, but none for the rest of the ride in eco mode. It was somewhat reassuring to realise that at the peak of my fitness I was still stronger and faster than I am now even with battery assistance.

The e-bike can’t beat the satisfaction of conquering a big climb unaided, or the thrill of whizzing along country lanes with only the  swoosh of your carbon wheels in your ears, but it could be a great investment for my rehabilitation. Better start saving my pennies – this bike retails at around £2,000.

 

 

Younger Women Together

Last weekend I took part in a two-day event called Younger Women Together. It’s hosted by Breast Cancer Care for women under 45 with breast cancer. I was nervous about attending because I didn’t know anyone there, and I wasn’t sure I wanted to Talk About Cancer For Two Whole Days…. but I reasoned it was a good opportunity to meet other women in the same position. It was. But I also surprised myself with how emotional I found the experience: I laughed a lot, but I also cried. Maybe that’s a good thing.

Day one began with a medical presentation by an oncology professor about drug therapy, and led into some break-out groups discussing cheery subjects such as early menopause (hello hot flushes and low mood) and breast reconstruction. Yay. Thankfully, the day finished with laughter yoga, which is just as ‘new age’ as it sounds but effective. Any session in which I end up lying on my back on the floor laughing hysterically gets the thumbs up from me.

There was just time for quick swim in the hotel pool (which didn’t irritate my radiotherapy burns as much as I feared) before dinner. I sat with a tremendously entertaining bunch of women and had a fantastic conversation about things that did NOT involve cancer. It was awesome. With a combination of thinly-sprouting hair, headscarves and wigs we probably looked a little strange to our fellow diners, but it really didn’t matter because for the first time in ages I didn’t feel like the odd one out.

Day two was when things got a little emotional for me. And when I say emotional, I mean proper full-on tears-pouring-down-face-breakdown. I walked into the break-out group discussing body image believing I was ‘totally fine’ with my one-legged, one-boobed decrepit body (“Who cares what I look like? It really doesn’t matter…”) but once I listened to other members of my group talking with great honesty about their difficulties in accepting their new shapes, and the effect on their relationships, I was hit with an overwhelming sense of grief for my own losses. And as the tears flooded down my face, and someone offered me a tissue, I realised I was not going to stop crying and I had to leave the room.

At that point, the old me might have gone home to lick my wounds alone. But this time I stuck around, and talked it out with one of the professionals on hand. And I did stop crying, eventually. And I went back out and talked some more with the other women who totally understood why I was having a meltdown. It felt – if not good, exactly – cathartic.

So what did I learn? That there is strength to be found in sitting in a room alongside twenty other young women  – all with families, and loved-ones, and jobs and a whole lot more of life they want to live. That alone was worth the tears.

New do

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.

 

Thumbs up


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).

I know how to celebrate. 

Ringing the bell

Bell

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.

Leaky eyes

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.

 

 

Drama queen

drgoogle

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.