Category: Reflections on cancer

Breast cancer lesson number 73: Cancer strips away the things we think define us and, in so doing, shows us who we really are

On By Jackie ScullyIn Chemotherapy, Happiness, Reflections on cancerLeave a comment

It seems rather appropriate that, while everyone is chomping on the last of their Easter chocolate, my head should start to resemble that of a spring chicken.

Since the number two head shave, the darkish brown (even the odd black) spiky strands have disappeared, only to be replaced by what I can only describe as a bit of blonde baby fluff and a lot of baldness. It’s not shiny, I now have less hair than all the babies I have met in the last few weeks (I just wish they could talk so we could share tips) and Duncan still insists I move seamlessly from the sleep cap to the day headwear, so he doesn’t have to experience the ‘ill look’ too often. For him, it makes my invisible illness visible. For me, it’s a sign the drugs are working.

With the quickest haircare routine ever, I am still finding the whole hairloss side of treatment quite liberating. So, I have decided it is perfect timing to share my no make-up selfie with the world. I appreciate I am about a month or so behind, but having already donated a good few pounds to breast cancer charities recently, I didn’t really feel the need to yank on my hair to speed up the process. This, for me, is the true face of cancer. It can’t be masked with make-up. It’s a face that suggests that I’m fighting, but that won’t ever give away quite how much. It’s a face that looks well, but, in truth, it’s not a face I ever thought I’d see (especially not in my early 30s).

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I am lucky in that I have never been defined by my looks. I am also lucky in many ways that cancer has chosen to give me a glimpse of a life without hair to show me just how little any of this image stuff really matters. I never thought I’d say this, but I am more comfortable in my own skin now that I can see a lot more of it.

Throughout my childhood, I was teased for having the wrong straw-like hair, the wrong complexion, the wrong waist and hip measurements and a raised birthmark on my neck that made people point and stare. I felt out of place in my gym kit, out of place in my leotard or swimming costume and without a real place in life. I used to envy all the girls with their beautifully braided hair, flat stomachs, fashionable clothes and string of admirers. I used to dream of waking up as someone people would want to be. Now, I couldn’t dream of being anyone else.

Strange as it may seem, cancer has made me take one long hard look in the mirror and come away smiling. Cancer strips away the things we think define us and, in so doing, shows us who we really are. Cancer hasn’t made me stronger or happier, but it has let me see just how strong and happy I really am.

I no longer search for beauty in a perfectly-styled hairdo or glossy lips. I look for beauty behind the eyes. Anyone can paint on a vision of happiness or hide away under a layer of foundation. But beautiful people can laugh and smile without seeking the reassurance of others or the support that comes with a brightly-coloured lipstick.

So maybe, just maybe, you might like to ditch the make-up on more than one occasion this year. You don’t have to post it on Facebook and you don’t have to donate money every time you leave the mascara at home. But, you might just surprise yourself and discover that your real beauty doesn’t come from a tube of tinted moisturiser. It’s been there all along waiting for you to stop covering it up.

Thank you cancer, for making me feel beautiful. And, I hope that by reading this, you might learn to love the skin you’re in – hairless or otherwise!

Breast cancer lesson number 67: Why cancer won’t stop me eating chocolate… and it shouldn’t stop you either

On By Jackie ScullyIn Chemotherapy, Happiness, Reflections on cancer3 Comments

Scratch the surface of a cancer diagnosis and it won’t take long to discover that this nasty illness is not an easy one to understand. So, it will come as no surprise then that, for every piece of sound and practical advice delivered by research scientists and medical experts, there are a whole series of myths out there, waiting to prey on vulnerable cancer-dominated minds.

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The idea that cancer feeds off sugar is one such myth. As explained by Cancer Research UK in an interesting article: 10 persistent cancer myths debunked (click here for the full article), to say cancer has a sweet tooth is to oversimplify the issue and distort sensible dietary advice. While no one would recommend consuming your body weight in Cadbury’s Creme Eggs or having a piece of cake with every meal, fighting and preventing cancer isn’t about taking away all pleasures in life. It’s about adopting a healthy diet that limits sugar intake, but doesn’t eliminate it entirely. 

Science has confirmed the link between a healthy diet and reducing the risk of cancer. Yes, cancer cells have a taste for glucose. But so too do our normal cells, which use it for energy. Unlike us, cancer cells don’t have a soft spot for the sugar that derives from cream cakes and pavlova. Glucose is glucose and it also comes from carbohydrates, which are broken down in our digestive system to produce both fructose and glucose. You’re not going to hear people saying that vegetables cause cancer now are you? 

If you’re looking for a miracle cure, now is the time to stop. If it were scientifically proven that giving up sugar – or having coffee enemas for that matter – would prevent cancer coming back, I would try my hardest to stop chomping on Cadbury’s creme eggs (and would bulk buy the coffee). But, when it comes to diet, there’s a reason the oncologist said not to change a thing. 

I, for one, am going to enjoy my chocolate Easter eggs – alongside my seven a day – every year for the rest of my long and, hopefully cancer-free, life. And, I hope there’s a chocolate-covered treat waiting for you too.

 

Breast cancer lesson number 61: Great care comes from people, not bricks and mortar

On By Jackie ScullyIn Chemotherapy, Reflections on cancerLeave a comment

‘Never judge a book by its cover’ is a phrase that could easily apply to hospitals. With perfectly painted walls and shiny equipment often comes an expectation that the care will somehow be better. But, the truth is, when it comes to treatment, it’s the person administering it (and of course the treatment itself), and not the room in which it is administered, that really matters.

Don’t get me wrong. I smiled when I saw the comfortable chemo recliner chairs (although I never did work out how to put my feet up) and the bright cancer day unit suite with its great views. And, I’m not sure standing room only is the right look for a cancer clinic. But, when I think back over my time in hospitals over the years, it’s not the flashy equipment or the chipped paintwork I remember. It’s the people – and usually the ones that have made me smile.

It was my faith in the team treating me that made me put people before private cover after my initial diagnosis. My Breast Care Nurse admitted that the only difference between private and NHS treatment for cancer was the environment and not the speed at which things happened. In fact, if I had called in my cover, there would have been a delay while the diagnostic tests were redone and the diagnosis reconfirmed. I liked my team, I liked the way they treated me, and the blend of kindness and humour that worked well with my temperament. I wasn’t going to trade that in for a private room and artwork on the walls. Looking back now, I know I couldn’t have made a better decision.

It’s not often I leave hospital with a huge smile on my face (just doesn’t feel appropriate on most visits). Today, however, I did. Admittedly, this was, in part, due to giant carrier bag of drugs I had managed to secure for myself at my oncology appointment to help control the side effects from chemotherapy (never before have I been so excited about getting mouthwash on prescription). But, it was really down to the kindness and care shown by those around me – from the smiling barista at the café to the warm receptionist at the Cancer Day Unit.

I started the day with an early-morning reflexology and aromatherapy massage session courtesy of Dimbleby Cancer Care, a free service designed to offer support and care for people living with cancer (be that patients or family members). I don’t think I have ever started the working week by being coaxed into a state of relaxation and covered in a thin layer of lavender oil. It was amazing as both a source of escapism and a chance to chat to the lovely lady rubbing my feet and back. Instead of lying back and closing my eyes, I quizzed her on everything from her nursing past to her experiences and downloaded all my latest recommendations (from bold beanies to PICC line covers). The best part? It wasn’t the wonderful scent of the oil, the free bolster cushion (for extra PICC line protection in bed) or the fact that my back knots almost melted under the pressure. It was the moment at which she said she thought I was an extraordinary person. I’m not sure my Monday mornings will ever be as soothing again.

An hour later, I was sat in front of another nurse experiencing the easiest blood test of my life thanks to my trusty PICC line. Little did I know when I sat down for my ten-minute appointment that we’d cover everything from her singing ambitions and band to her love of children’s medicine and shift-based work. It was nice to feel like I was chatting to an individual with hopes and dreams rather than a lady in a blue dress with yet another syringe of saline solution.

Next stop, the oncologist. Three weeks ago, he told me he would be behind me 110%. And, true to his word, he was. The appointment was less about having a nice chat and more about him furnishing me with the contents of a small pharmacy. With extra Domperidone (bye bye nausea), Zoladex, Corsodyl and Difflam, plus soluble paracetamol and codeine (to experiment with as a mouth rinse because he’d seen it work before), I feel ready to tackle chemo 2. Even the oncology receptionist wanted to add in a mouth ulcer-related recommendation when I popped back to get the prescription adjusted a few moments later.

Finally, there was the smiling man at the pharmacy desk. He took great delight in both booking me in early (while I popped back to the clinic to amend my prescription) so I wouldn’t have to wait, and then walking me through my medical goodie bag. Service with a smile is often hard to find in the capital, which makes the experience even more satisfying.

I couldn’t describe the contents of the oncology consulting room, the massage seat, the pharmacy or the blood test cubicle in any great detail. That’s not because I’m not observant. It’s because, when the care is brilliant, there really is nothing else to see.

So, if you ever find yourself looking up at a tired hospital block, think not of the peeling paintwork, but of the people inside willing you on. For when you close the consulting room door one last time, it will be the kindness of those caring for you – rather than the chair they sat on – that will stay with you forever.

Breast cancer lesson number 53: There is a time and a place for playing the cancer card

On By Jackie ScullyIn Reflections on cancerLeave a comment

Every patient facing a cancer diagnosis gets a card (I like to think of it as the cancer equivalent of Monopoly’s ‘get out of jail free card’). It’s a card that when played too often can all too quickly become meaningless and frustrating. But, it’s also a card that, when played tactically, can open doors and make things that otherwise seemed impossible, suddenly very possible.

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Up until now, I have been reluctant to call in the card. I don’t want to scream and shout and parade my illness in a way that makes people uncomfortable. I just want to be me. While there have been a few notable exceptions – 95% of which involve couriers and delivery drivers, absurd delivery windows and strange demands ­(the thought that someone might actually dismantle my new kitchen table if it wasn’t delivered on the day of an important hospital appointment being one) –­ my card is pretty clean (and my conscience too).

That is, until today. Today I needed the card and I was more than happy to play it. Having had another steroid high of a day (yes, beyond a constant morning mouth feeling and strange taste sensations, I am doing pretty well after my first bout of chemo), mum and I decided to catch the boat from Greenwich into the city for a lovely long walk along the river. The sun was shining and it was wonderful being carried along by the crowds. It felt normal and we felt normal. It wasn’t long, however, before we realised there was something missing. Two little white anti-sickness pills!

Having experienced a nasty helping of nausea on Wednesday night, these were two pills I wasn’t going to miss. The trouble was, time wasn’t on our side. When we arrived at the jetty to catch the next boat back we were told the boats were fully booked for the next hour. With the memory of Wednesday still firmly imprinted in my mind, we aborted plan a) (quietly sit and wait) and opted for a more assertive (while still pleasant) plan b).

As soon as the words ‘cancer’, ‘chemo’ and ‘pills’ passed my lips, we were escorted to the nearest seats and looked after my a lovely chap in a bright orange high-vis jacket. He squeezed us on the next boat as a ‘priority case’ and we got back just in time for me to take the drugs. I will be forever thankful to this tall, dark, bright-orange clothed man and am now looking forward to – rather than dreading – the smell of sausage casserole filling the kitchen.

It may seem like a small incident, but that moment taught me the real power of ‘playing the card’. I felt weirdly untouchable and important. When I had actually got over the guilt of knowing it was my own fault for forgetting the pills, however, I also felt a little sad. It’s rare that I am reminded of the seriousness of the cancer that tried to take my life. The truth is, you don’t have to be being treated for the illness to know just how scary the whole thing is. When cancer comes into play, everything feels like a race against time. Trust me, it’s a powerful card, and it’s one I hope you’ll never have to play.

There was another reminder waiting for me at home of the doormat – confirmation of my histology results. For the first time, printed in black and white were the words: ‘multifocal grade 3 invasive pleomorphic lobular carcinoma with admixed LCIS’. As well as my dominant tumour, my naughty breast was also filling up with LCIS (lobular carcinoma in situ). With the LCIS and the invasive mass, the total tumour measurement came to a total of 60mm. Add in the lymph node involvement and that puts me in the stage 3 camp. High-grade, aggressive, and not very fun. The good news? It was stage 3 (click here for the science) and not 4 and it’s out. I have a life – and a wedding – to look forward to and my fight will end. I am lucky. But, I know there are many people who are not so and, for that, I am very sorry indeed.

It was a letter packed with medical terminology. But, it still made me smile. Tagged on the end, after talk of ‘macrometastic disease’ and ‘adjuvant therapy’, was the phrase: ‘On examination her wounds have healed well with good cosmesis’. Thanks to the wonders of Wikipedia, I looked up the word ‘cosmesis’ and discovered it to mean: ‘the preservation, restoration, or bestowing of bodily beauty’. In short, the new boob is pretty good looking. I’ll take that. It’s in a medical letter. It must be true. It may not have a nipple, but the shape is there.

Of course, fuelled by my steroid high and no longer fearing the nausea I didn’t dwell on the letter or the boat trip. Mum and I proceeded to clean the kitchen floor (until I cut a finger on my right hand and went racing for the Savlon), do the washing, hang out the washing, change some lightbulbs, do some composting and cook up some Turkish delight. The dinner is now on. Let’s hope when the steroids wear off tomorrow, the positivity and productivity continue. There’s publishing work to get back to next week!

Cancer doesn’t do days off. In most cases, a pill or a layering of antiseptic cream will bury it in the background for a moment, but it never goes away. At some point, you will need that card. Hold it safe and play it wisely ­­– and dream about the day when you won’t need to play it again.

Breast cancer lesson number 44: Living with cancer doesn’t just mean being treated for it

On By Jackie ScullyIn Reflections on cancer1 Comment

It’s official. I am being stalked by cancer. It is not enough for me to be diagnosed with the illness. Everywhere I go, I am bombarded with adverts, campaigns and television plot storylines. I can’t even go on Facebook without seeing the latest no make-up selfie. I keep asking myself has it always been this prevalent? The answer is probably yes. I just wasn’t looking.

Have you ever found that when you learn about something new, you suddenly find yourself seeing it everywhere? For me, it started with a train journey after biopsy day. Suddenly, it seemed every carriage brought with it a message about cancer. After I was diagnosed, I felt like every advert break on TV was talking to me in some way. Is it strange that the first film I watch on returning home from hospital ends up with a bit of cancer at the end? Is it stranger that the book my mum was reading at the time took a turn towards breast cancer halfway through? Even the TV soap Eastenders decided to get in on the action – just as Hayley was saying her goodbyes on Coronation Street.

Interestingly, I am not alone. Apparently I am experiencing what is known as ‘frequency illusion’ or the Baader-Meinhof Phenomenon. What this means is that while you think you are seeing things more often, it is likely that whatever it is you’re seeing has been there all along. A lot of discussion on this subject surrounds the discovery of things that you’ve never heard of before (a town name or a song title for example).Ok, I appreciate cancer isn’t new to me. But, until 17 January, it was a generic term to describe a serious illness in different parts of the body. I have known loved ones who have been affected by it, but I wasn’t being reminded of it every day. My cancer radar is now in overdrive. Trust me, if there is a cancer story out there, I am probably going to be drawn to it.

With cancer constantly beating a drum in my head, I have been truly touched by the stories of those undergoing treatment and the way in which people have chosen to raise awareness. Only last night was I watching an inspirational BBC3 programme Kris: Dying to live about Coppafeel founder Kris Hallenga. Diagnosed at 23 with stage IV breast cancer, she has had to learn to live each day with cancer as her boss. Now 28, I think she’s doing a pretty amazing job. Then you have Lisa Lynch. Soon to be made famous in a TV programme with Sheridan Smith playing Lisa, the dark humour in her book The C Word really moved me. While she may have lost her battle (after being originally diagnosed with stage 3 breast cancer), her story lives on through her words. She will continue to inspire those going through treatment and becoming all-too-familiar with hospital corridors!

The truth is, cancer is everywhere. It affects us all. One in three people will get it in their lifetime. Cancer stories move us because they’re real. They’re being played out in your next door neighbour’s house, in your extended family, at work or, even worse, at home. We are all living with cancer and the more stories that can be told, the more awareness we can raise and the more comfort we can bring to those facing the illness.

As an aside, you may be wondering why I haven’t done a no make-up selfie yet. Initially troubled by the whole concept (my blog is positive not political hence the radio silence), I was delighted to see how much money it raised. I have donated about three times already and am storing up my selfie for when my hair falls out (I don’t really wear make-up, so it would just be a picture of me currently, and nobody needs to see that). That is the true face of cancer and I’m afraid no amount of make-up will ever really conceal its effects (a good wig, yes, but more on that after wig shopping)!

Cancer, I’d like to think one day you will just be another zodiac sign. But until then, I say bring it on (not more disease, just stories)! I would like to be stalked. I want everyone to know just how mean you are. I also want everyone to know that while you do so much harm to this world, destroying lives and ripping families apart, you have inadvertently created millions of strong, beautiful and inspiring people. You should be recognised for your contribution to the arts, the amount of amazing words and films for which you are responsible.

Yes, it would be great to think we could live in a world without cancer plotlines. But, while there is cancer, I want to be moved and touched by each and every one.

Breast cancer lesson number 40: Cancer treatment is like a punishing endurance challenge. Savour those checkpoints

On By Jackie ScullyIn Breast reconstruction surgery, Fertility, Reflections on cancer1 Comment

For me, breast cancer treatment is a five-stage race. First, you lay down on a slab and get rid of the troublesome cancer. Stage one, tick (if we ignore the fact I have to get a little cosmetic adjustment at some point in the future). Next, you get to store some babies in the freezer. Stage two, tick. With fertility over, your veins get a high dose of body-killing (or life-saving) chemo drugs. Stage three, tick. Once your body has started to recover, you get a blast of high-energy radiation. Stage four, tick. Then, if you’re still standing, you say goodbye to daily hospital visits and hello to daily doses of oestrogen-blocking pills. The finish line is currently scheduled for some time in 2019, and I have no plans to go back in training after that! After that, the only races I’ll be tackling will be charitable ones!

Tomorrow is the end of stage two. That makes it a special day (one refreshing checkpoint in this epic race). With the end of stage three planned for mid-August, it will be a while before I once again feel like I am one stage closer to the home straight. Chemo is a long stretch and I know I’ll need all my energy just to get to the end.

I have to say, sitting here with a bloated stomach that makes me wants to live in the toilet, tomorrow cannot come soon enough. I certainly don’t think a body corset, tummy scar and enlarged egg-stuffed ovaries – combined with a functioning bladder and stomach – belong together. I feel like someone is bouncing on my stomach and there isn’t enough skin to go around. Starting to find the idea of a needle in my ovaries rather attractive.

What did I feel like after completing stage one? First, there was pain. Then, there was immense relief. I’d like to say I was dancing around my hospital bed. But, let’s face it, I could barely stand. How do I think I will feel if we are lucky enough to pop some embryos in a freezer bag? First, I will be happy that the baby back-up plan is in place. Then, relief that I can walk from the living room to the kitchen without needing a wee. (I also quite like the idea of a fridge that isn’t full of syringes and vials.) Neither of these sound like great moments of celebration or markers in history. But, when there is life at stake, you’ve just got to be happy you registered for the right race and are running in the right direction.

Cancer checkpoints don’t come along very often. When they do, whether you’re on morphine or Merlot, you’ve got to grab them, get the most out of them and use the happiness (or relief) they bring to take you forward into the next stage. I may be more likely to be raising a mug of tea than a glass of wine at the moment (last night aside), but I am determined to make sure each one of these stages does not go by unnoticed (I think a lot of people design a sign to mark their last chemo session, so that’s on the to-do list for stage three). You may lose a few consultants and nurses along the way, but that doesn’t mean there are any less people rooting for you to succeed. There are just a few less appointments to attend, a few less needles and a few less worries to occupy your fact-filled mind.

This is a race I will complete – and there will be a big smile waiting for me at the finish line (and probably one of the many bottles of engagement champagne currently gathering dust in the cupboard). I am not going for a personal best and there won’t be a medal at the end of it, but there will be life. I hope you’ll be there to cheer me home. 

Breast cancer lesson number 32: Dust off your satchel, you’re going back to class!

On By Jackie ScullyIn Reflections on cancer6 Comments

With the volume of tests, examinations and terms to commit to memory on a daily basis, you could be forgiven for thinking you signed up to a course – not a course of treatments – on diagnosis day! Cancer, do you really need your own curriculum? And, do we all have to be graded?

Breast cancer is the biggest module you’ll ever take – and not one any of us would wish to retake or even fail. For starters, it has its own language. You may not have to get the grammar – and you’ll be forgiven for misplaced capitalization – but once ‘benign’ becomes ‘malignant’, it’s best to reach for the dictionary – and fast.

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First there are words that cancer has deemed appropriate to rename. I think armpit is a fairly straightforward word, but cancer thinks it should be something a bit more technical. Enter ‘axilla’! Having been acquainted with my lymph nodes for the first time, it didn’t take long to work out that they are also referred to as lymph glands or axillary nodes (when under the armpit). Why opt for one term, when three will do! And, did you know, far from just having a boob job with tummy tuck and node removal, I actually had a mastectomy with removal of the areola followed by a deep inferior epigastric perforator flap with axillary clearance? Put like that, I am exhausted just saying it, let alone recovering from it!

But, that’s not all. Once you get over the fact things have three names and that once you become familiar with your armpit, it becomes something else, stage 2 of the cancer curriculum gets thrown in. And, by stage 2, I mean acronyms. Navigate the CT, choose between the WLE and the MX and then you get to find out your ER status and whether or not you are HER2 positive (all of which is discussed at length at an MDM). That’s before you get inducted in the language of chemo (FEC, FEC-T, CMF and AC anyone?). My absolute favourite so far: FISH. Don’t be fooled into thinking it has scales and eyes. FISH actually means ‘Florescence in situ hybridization’, which is a way of measuring HER2 levels in cancer cells. Not tasty, and certainly wouldn’t go well with lemon.

Armed with my Breast Cancer Care glossary (thank you so much for creating this superb revision guide), I am transported back to the days of French A-level revision (although without the lovely nightly walks with my parents throwing around vocab). I have always liked vocab tests and like to think of myself as a cancer codebreaker. But, when it feels like you’re being home-tutored in a class of one, and you want more than anything to pass with flying colours, the pressure really is on!

Breast cancer has its very own secret after-school club. And, if you know your MDM from your MX and your DX, then you’re in (whether you like it or not). You often won’t be able to spot a breast cancer patient, but just know that there are people all over the world with new boobs (or adjusted ones) all trying to revise harder than they ever have before.

This time, it’s not about getting top grades (nobody wants a high grade cancer). It’s not about getting a certificate and a gold star (although I wouldn’t say no). This time, the reward is life – something definitely worth dusting off the satchel for!

Breast cancer lesson number 31: What you lose in dignity you gain in confidence

On By Jackie ScullyIn Happiness, Reflections on cancer1 Comment

I lost my dignity somewhere between getting drawn on by a surgeon with a giant marker pen (in front of another surgeon and my parents) and having an unexpected internal scan at my first fertility appointment. That’s not to say that my amazing hospital doesn’t go to great lengths to protect it with their well-placed gowns and paper towels. But, when you’re picking out your clothes based on what gives people ‘easy access’ you know it’s pretty much gone – and the chances of recovering it are very slim (I appreciate that may make me sound a little bit like a loose woman. But, trust me, it’s all in a good cause!)

Surprising as it may be to hear, I don’t want it back. In its place, the hospital has inadvertently given me something so much more important: a massive dose of body confidence. That’s not to say that I have a burning desire to take my top off or wear more revealing clothes (I don’t think the world would ever be ready for that). But, by encouraging me to undress at pretty much every appointment (sometimes just out of pure curiosity and kindness), I have realised for the first time that I’m happy with my lot.

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It may sound strange coming from someone with a large scar down her hip (and four giant metal pins inside), a scar on her neck from a old birthmark, a walk that looks like it belongs on the comedy circuit, an amputated boob (and a new imitation one without a nipple currently), straw-like hair, a scar the length of my tummy and so-called ‘child-bearing’ hips. But, every time I look in the mirror now as I massage my modifications and wash my hair, I don’t see my flaws. I just see strength.

I know I’ll never be stopped in the street or take someone’s breathe away with just one look. I know that I’ll never be able to wear short skirts and look good in a pair of shorts. I also know that when fully clothed I am just another plain Jane on a commuter train. But, what makes me smile is that, beneath the pink cardigans and the navy dresses, I am a warrior. And, if you asked me to choose, I wouldn’t change a thing (beyond getting a serious illness in the first place of course). After all, if the world wanted us all to be beautiful, it wouldn’t have invented mascara! And, I love mascara!

Beauty isn’t about having good skin, it’s about being comfortable with what you have and accepting who you are. You’ll find there’s a cream for everything else.

So, I challenge you to stand in front of the mirror this weekend and smile. Smile at the good bits (I am positive you all have something about which you are particularly proud. For me, I have always liked my eyes and my shoulders). Then, most importantly, smile at the bits that make you who you are (the childhood scar you’d wouldn’t have had if you’d listened to your parents, the finger nail that just doesn’t grow the way you want, the knee that hurts, the big toe that you always bury in thick socks).

Smile because you’re you. I wouldn’t have you any other way!

NB: if you’d like to find out more about scarring and breast reconstruction (with DIEP), head to lesson number 21.

Breast cancer lesson number 30: Life is a gift worth unwrapping every day. Make sure you share it

On By Jackie ScullyIn Brighter Life List, Happiness, Kindness, Pink hearts, Reflections on cancer5 Comments

At the end of last year, before cancer came along, took me by the heels and shook me hard, life had already taught me a really big lesson. Just before Christmas, I packaged up more than 50 individual present hampers for family and friends (please read the rest before you declare, where was mine?!). Looking down at my 200 handmade items – everything from chutneys and jams to bath bombs, soaps, candles, Christmas hearts and spiced festive biscuits for the tree – I remember thinking that all those late nights, packed weekends, paper cuts and missed film plotlines (usually lost while untangling thread) had been worth it, because I was going to make people smile.

I was wrong.

Firstly, I didn’t think that actually hand-delivering them (rather than leaving them secretly on desks or sending them via friends) and explaining what was in each one (apologies to my lovely colleague who mistook a bath creamer for a white chocolate treat) might have meant something to those on the receiving end. Secondly, by burying myself away for months on end I missed more than just film plotlines. I missed friends. I missed ice skating at Somerset House and a warming post-skate (or shuffle) hot chocolate (always like to dream that I am on the set of Love Actually). I was too busy to see the Christmas lights. I flew to Ireland for a wedding and was too ill to raise a toast to my beautiful friends. I woke up on Christmas Eve and wondered just where December had gone. In short, I was so busy doing, I wasn’t actually living. I was so busy making things, I wasn’t actually making memories with the people I love. I thought I was doing something kind. But, I missed the point. And then, as we all know, I discovered that lump!

I woke up on January 1 knowing this would be the year to start doing things differently. And, I think life, knowing how quickly I would fall back into the same routine, thought it would throw me a life-threatening illness just to make sure.

So here’s my conundrum. Over the past eight weeks, I have experienced a lifetime’s worth of kindness. I have tears running down my face as I think about the wonderful words, the pre-surgery chocolate and the thoughtfulness that has filled up my heart, my stomach and my living room shelves (to be honest, any surface at the moment). From the tea lady who snuck me extra biscuits to a well-timed email from an old friend, I feel truly blessed. It seems strange to think that cancer has brought me so much happiness, but it has. My task now, is to both thank all those who are helping me smile through this chapter and to learn to carry this feeling of happiness with me for the rest of my life.

I have spent a lot of time over the last few weeks thinking about thanking. I know now that life is a bit too short to bury yourself in toy stuffing all the time (even though I love my craft). That’s not to say I won’t be untangling thread any time soon (in fact, I have a new sewing machine to play with) but I think people might actually enjoy a little less stuffing and a little more time.

So, here’s my plan. Drawing on the wonderful skills of Kirsty Allsopp, I have made (and will continue to make until the world has no pink felt left) a series of pink hearts with a pink ribbon running through each one. They’re simple to make. They’re great for my arm rehab. They represent in colour and design the challenge I’m facing. They do include toy stuffing, but in limited quantities. And, yes, they’re a little bit cheesy, but anyone who knows me well will know that’s just my style.

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Together with handwritten messages and pale pink envelopes, I intend to hand deliver each one of these hearts to the people in my life who’ve made me smile. No secret gifting, no postage stamps required. Just me, giving my time so that I can give back to those who have selflessly spent time thinking about me. Yes, this may mean getting on a plane or trying to get the name of the nurse who made my stay in recovery so enjoyable. Back in lesson number nine, I said I am not sure I will ever be able to thank you all for the kindness you have shown me so far, but that I would spend the rest of my life trying. I won’t stop until I’ve delivered each and every one.

This is a heart I want you to hang (even if it’s in the airing cupboard or the downstairs loo). Every time you look at the heart, I don’t want you to think of me. I want you to think of all the people in your life that make you who you are and make you happy to be alive. I know that when the business of life gets in the way, it often feels hard to find the time to feel thankful. But, you only get one life. This is your moment and no one else is going to help you seize it. That’s how I feel right now, but all I have to worry about is my next hospital appointment and whether or not I have enough tea bags and milk in the fridge. I want to look at my heart and remember this moment – and the cancer that told me to see the beauty in others and every day.

But that’s not all.

This heart comes with a hidden extra. For every heart I give, I would like an address in return (not because I am a stalker). Yes, this will help me cleanse my address book. But, it will also mean that sometime in the future (should you not move of course), I will be able to send you a little reminder. It won’t come with a note. You’ll probably think it’s been delivered to the wrong house. But, I’d like to send you a little surprise, a little act of kindness that helps you smile through the battles in your life. After all, you’re only human. The heart will fade or get dusty in the attic. Life will get in the way. We all need something to look forward to.

I’m also going to start a brighter life list (watch out for new page coming soon). This is not a bucket list – as my consultant says, we’re aiming for the grand old age of 92! This is a public declaration of all the things I know I want to do, but have always found an excuse to push down the list. They’re not ground-breaking. They’re not all particularly special. But, they mean something to me. By posting them on my blog, I want you to help me tick them off. Please add to the list (if you know me better than I know myself), or join me on an adventure if you want to tick it off too.

Life’s a fight. But life can be kind too – and the people in it. Kindness is what I want to gift to this world, one fluffy pink heart at a time…

NB: it may take you years to receive your heart (I won’t just fling it to you at a party), but please know that if you have shown kindness, it’s on its way!

Breast cancer lesson number 25: Now is the time to stop waiting and start living

On By Jackie ScullyIn Reflections on cancer4 Comments

Ask me what one of the hardest things about living with breast cancer is and I won’t mention the pain, the frustration, the sadness or the fact I can’t wear pretty much anything from my wardrobe (if it’s not button up, zip down or very stretchy, it just won’t work). For me, an impatient, ambitious, run-before-you-can-walk type person, one of the hardest things is the waiting. Because, when you’ve got lots of tests and a dedicated team all rallying round to save you, there’s lots of it!

Now, by waiting, I don’t mean waiting rooms (with a good book and my mum at my side, I could wait all day). I still have mixed emotions about the fact there is rarely anyone even close to my age in any waiting room (I nearly pounced on a young woman on pre-op day because she looked like she was in her 30s). No, by waiting, I mean waiting for the next hospital appointment, waiting for the biopsy results, waiting for the surgery, waiting for the pathology results, waiting to start fertility, waiting for chemo and waiting for the letters summoning me to all these things to come through the door. It’s not the waiting so much as it is the fear and the sleepless nights that descend when certainty is replaced with those wonderful words: ‘what if?’

Waiting in cancer land is like queuing for a new ride at a theme park. You have a rough idea of how long it will take, but that gives you no comfort. You think, when you join the end of the queue, your turn will just never come. And then, when it’s your time to sit down waiting for the action to start, you wonder why you even wasted a moment worrying. That is, until you join another queue for the next ride and the pattern starts all over again. I’m a Brit, I’m polite when queuing, I’m a patient patient, and I should really relish the opportunity to stand in line and wait my turn. Trouble is, when your life is on the line, even the smallest of waits seems like an eternity.

There is one comment from yesterday’s pathology meeting that has been playing on my mind. When I asked about the future and the probability (the higher the stage, the higher the risk) of the cancer returning, I was faced with a lifetime of uncertainty. Every individual and every cancer diagnosis is different. My surgeon explained that if I can get through the next 10 years, I can get through the next 60 (92, maybe I’ll be the fittest grannie going). That’s one whole decade of standing in line. Even I, queue queen (I have a tendency to gravitate to lines longer than about five people), think that’s a pretty long queue. Yesterday, I walked into the hospital thinking I just had chemo left. I came out with a course of radiotherapy thrown in too. Cancer doesn’t play by the rules and stand in line, so why should I?

So today is the day I stop waiting and start living. The appointments will come and go, the treatment will come and go. The cancer was here and now it is gone. Life is a colourful tapestry of memories and magical moments – and most of these aren’t made while waiting for something to happen. I will go to the Amalfi coast (after years of hoping), I will get married (once Duncan agrees to there being more than four guests), I will achieve my dream of looking good in a pair of shorts (maybe not this summer while on chemo) and I will try and seek out something in every day that reminds me that you only get out what you put in. Your challenge, should you wish to accept it, is to help me keep smiling, keep positive and keep adding to that tapestry so that this next decade can be the best one ever!

Diary, you’re about to get busy!