Radiotherapy Day One

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.

I can only apologise in advance for the pong.

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The club

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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.

 

 

 

Venturing out

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A flat white and complimentary brownies: a cyclist’s dream

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.

My first tattoo

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*This is not my actual tattoo

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!

The lab results are in…

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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.

Surgery done

Good morning! I thought you might all enjoy this sexy stocking shot over breakfast. I took my inspiration from Sam and Dave’s ‘anniversary snuggles’ pic from a few weeks ago. You’ll notice that the advantage of having only one leg is that there’s plenty of room on the hospital plastic sheeting for all your crap. 

Anyway, I have recovered from all-night vomiting (thanks general anaesthetic), have a bruised and numb replacement boob and am only slightly delirious. Things are going well. 

I will be doing my utmost to escape from here today. Thank you to everyone who sent me messages yesterday – much appreciated xxx

Surgery: Take Two

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It’s been a super stressful week, as my white blood cell counts are still low, which was the reason for cancelling my operation two weeks ago.

But after much wringing of hands and changing of minds (and that was just the doctors), we are now going ahead with the surgery. Tomorrow.

I can’t say I’m over-confident going into an operation which was deemed “unsafe and irresponsible” under the same circumstances a mere two weeks ago, but the tumour has got to come out so all I can do is cross my fingers and hope.

Wish me luck x

 

The best-laid plans…

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All ‘marked up’ and nowhere to go

If Theresa May was having a bad start to the day, I was feeling more hopeful: my hospital bag was packed; iPad fully-loaded with films; childcare arranged. Hell, I’d even written A farewell letter to my boob. I was ready.

The positive vibe continued after arriving on the ward: the nurse told me I was first on the list (that never happens) and I had been allocated to a private room (that never happens). By 8.30am I was in my gown and compression stockings (sexy), had been ‘marked up’ by my surgeon (i.e. she’d scribbled all over my right boob with black pen) and I’d even managed to share a crap joke with the anaesthetist who seemed to share my gallows humour (they always do).

Then my blood test results came back.

The surgeon came back to see me with a grim look on her face. She explained that my white blood cell levels were too low to proceed with surgery. White blood cells help your body fight infection; too few of them and your body can’t defend itself against infection post-surgery.  Chemotherapy’s to blame for my paltry levels – it destroys white blood cells temporarily. Then your body makes more and your levels ‘bounce back’. But mine were seemingly too bloody knackered after six cycles of chemo to be bothered. I know how they feel.

It may seem odd to get upset over not having one’s boob surgically removed, but at this point I just wanted the tumour gone.  So obviously I burst into tears. And then removed my surgical stockings and threw them onto the floor. That’ll show them.

Then I got dressed, tried ineffectually to rub the black marks off my chest, and got back in the car with my long-suffering husband for the grumpy drive home (stopping off at B&Q on the way to buy the sodding smoke alarm that I’ve been nagging about for the past two weeks).

My surgeon is (of course) away next week so my operation will now be delayed for a fortnight.  I’m sure I will muster enough energy to psych myself up again, but seriously – why is nothing ever straight-forward?

A farewell letter to my boob

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Dear Boob,

We haven’t always got on, but now I’m losing you I’m feeling kind of sad.

You see, I’d already chosen what kind of breasts I wanted when I was ten. I had this Illustrated Guide to Puberty. It explained, with what I can only describe as a gallery of boobs, that breasts come in different shapes and sizes, and no one type is superior to others.

Whatever.

Even then I knew that in Real Life only the big and bouncy ones count.

And we did have a promising start to our relationship. Getting my first Tammy Girl training bra was one of the highlights of my pre-teen years. Although I never did work out quite what we were training for. At any rate you never made it much past the start-line, stubbornly remaining flat, even though I did all the chest-press exercises prescribed by my bigger-boobed mates. I was incredibly gullible in those days; I also spent an entire weekend winding my hair round a pencil because another classmate told me that was how she got her naturally curly hair.

Luckily, along came my saviour in the form of the Wonderbra. I took one look at those life-size Eva Herzigova billboards and ran to Debenhams to buy one. You spent years encased in that punishing push-up underwired hell (sorry about that), yet I still didn’t stop traffic.

I felt that you’d let me down in your sullen refusal to form a cleavage, and I spent way too much time crying in the Miss Selfridge changing rooms as various low-cut tops and strappy dresses failed to produce the curvy silhouette I craved.

But then 2005 happened. A shock diagnosis of bone cancer in my leg. So I didn’t even think about you for several years. I had more important things to worry about. Having my limb amputated was just as devastating as you’d imagine. And then some. For a start, I’d always compensated for my lack of cleavage by flashing a bit of leg (classy, I know) and my fiancé-now-husband had always reassured me that he was more of a leg man than a boob man.

So that turned out well for him.

The along came my two precious (and unexpected) babies, and finally you morphed into the D-cup I’d always imagined I wanted. But you were rock-hard, engorged and sore and had to be carried around in a deeply unattractive Mothercare breastfeeding bra. At one point there was a savoy cabbage leaf stuffed in there too because someone told me that helped with the mastitis (apparently I’m still a bit gullible).

It has to be said – credit where it’s due – that once we got over the sore-as-hell-tits bit, you did an excellent job of feeding my babies, and so I wasn’t too cross when, later, you shrunk back to your pre-nursing size. Although I could have done without the extra droopiness.

Then I got into sport in a BIG way. Partly this was an act of defiance: I’d spent so long as a cancer patient, that I was out to prove I could still achieve something. And so I chose a sport (or it chose me) that was singularly difficult to do as an above-knee amputee: cycling. Because – bloody hell – if I could ride a bike really fast with one leg, then I could put all this cancer crap – once and for all – behind me.

And for a time I did. I rode in competitions in Italy and South Africa, and represented Great Britain at the UCI Paracycling World Championships. The advantage of being flat-chested soon became clear when I tried to squeeze into my Lycra skinsuit for the first time.

And so, finally, I made peace with you. I felt positive and powerful in my new cycling-fit body. I became used to pushing my body to its limits and enjoying that post-workout glow. I had survived cancer and I was strong. Your diminutive size no longer mattered – because you were healthy.

Until you weren’t.

When I felt the lump in the shower, I knew straight away that it would be cancer. I was familiar with your usual monthly bumps, but this felt different – like a little hard and jagged stone close to my armpit. I’ll admit I had neglected my regular lump-checking duties duties for a few weeks – I was busy and anyway, I was done with cancer. Wasn’t I?

I had no idea how long you’d been host to this malignant stranger and that made me feel guilty. Perhaps if I had shown a little more TLC, checked more frequently, eaten more carefully, drunk a little less… These are the kind of irrational thoughts with which I’m now plagued.

So, after five months of chemotherapy, here we are. The drugs have shrunk your tumour a little, but there are still too many cancerous cells remaining.

It’s time to say goodbye. Your silicone replacement won’t be as soft as you, or as warm.

After all these wasted years of pointless criticism,  it’s time to admit the truth – I’ll miss you.

Love Sal x

Nurses – here’s what not to say…

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With my operation looming (Friday, since you ask) my anxiety levels are increasing day by day. And today’s pre-op assessment didn’t help: Why oh why do nurses and healthcare assistants feel obliged to talk about the quality of your veins whilst taking blood?

I’ve been drained of more blood over past six months than a vampire’s victim and every single time it’s not the act of the blood-letting that makes me feel sick but the accompanying ‘reassuring’ chat.

Today’s torturer had already noted that I’d had chemotherapy so vocalised her concern that my veins would be ‘poor’ (chemotherapy tends to be bad for veins, and indeed most other organs).  My already-raised anxiety levels went up a gear; no one wants to be stabbed by a jittery needle-wielder.

But after some enthusiastic slapping of the crook of my arm, she exclaimed in delight,

“Ooh, this one’s really juicy!”

My stomach churned.

Then the inevitable warning:

“Sharp scratch”

Then to finish me off:

“Yes, this is a fantastic vein – it’s like turning on a tap!”

I could see out of the corner of my eye (I always look away) that the red stuff was indeed gushing into the blood bottles.

I turned a delicate shade of green.

The nurse is delighted with the performance of my veins and clearly thinks I should be too.

But I’d much rather she kept their qualities – however superior – to herself.