Category: Charity

Breast cancer lesson number 179: Remember how far you’ve come, not just how far you have to go

On By Jackie ScullyIn Charity, Exercise and breast cancer, Happiness, Moving forward, Reflections on cancerLeave a comment

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Walking a path in a tiny park by my house might seem an odd subject to break my blogging silence.

But, as I jogged the 209 (ish) steps from one side of the park to the other on my way swimming at the weekend, I was reminded of the fact that in June 2014, this narrow path was not just my route on the way to somewhere else.

It was my route to my first ever 10k.

When you’re training on chemo, 209-step bursts are more than enough. Little did I think, however, as I plodded up and down the path in an attempt to jog continuously for about 10 minutes, that I would be signed up for a marathon just one year on. If that’s not progress, then I don’t know what is!

Yes, that’s right. One whole marathon. One whole 26.2 miles around the streets of London. And I’ll be running it in a Breast Cancer Care vest.

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Those of you who have followed my running journey (from the GB 10k in July last year to the Bath Half in March) will know that, for me, running will always be as challenging as it is fulfilling. I am not a natural runner. I have a hip full of metal from major pelvis surgery in my twenties and I still set out for every session wondering if this will be the day when I won’t be able to walk back through the door at the end of it. Chemotherapy drugs tested my ability to train and improve (I ran my first 10k with my acute oncology card in my back pocket). And my hip continues to test me every day.

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A year ago I thought a 10k would be my marathon. Now, I am starting to realise, while incredibly difficult and draining, my biggest running challenge is yet to come.

My biggest fear, however, is not the race itself. No, my biggest fear, is not making the starting line. I know the training will test me. What I don’t know, as I stroll back from my latest 10k run thankfully without pain, is just how much. (Yes, as an aside, an evening 10k after work in Canary Wharf, which demonstrates just how much my life has changed.)

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If the x-ray I saw on Monday is anything to go by, my hip is happier than ever. The right hip is stable and the left side is strong and pretty bionic. I thought it would be a bit weird to snap the consultant’s screen, so below is an example of what is going on beneath the compression tights in a bit of my body that thinks Breast cancer slightly stole its thunder last year. Of course, I didn’t exactly mention the words London and marathon, but that’s because no is no longer an option. It’s now all about how.

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Why London, why now? I know there will only be one marathon in my life, so it has to be the one that pretty much starts in my back garden and the one that trapped me in my flat for eight years when I lived at the 16-mile mark (I am hoping that I might miss hitting the wall as I will be spotting all my old haunts). London is the greatest city in the world and it will be a real privilege to run (or jog/walk) alongside thousands of amazing and humbling people.

This blog post, however, isn’t really a blog about running. It’s about progress.

I think we all get so wrapped up in what we can do right now, that we forget how much we have achieved – and how hard we’ve worked to get to where we are.

In the same way, we often think a challenge now, will still be a challenge tomorrow.

Progress doesn’t have to big. It can be getting out of bed and opening the curtains after surgery. It can be tasting your first slice of bread after chemo has handed back your tastebuds. It can be running for the bus without needing to catch your breath or keeping a promise. It can be leaving work on time or tucking your children into bed. It can be remembering to say thank you to the people who have touched your life.

Progress doesn’t have to be groundbreaking. It just has to be celebrated, every day with a grateful heart.

So hear’s to a little thing called progress. Last year I never thought I would be able to complete a 10k. One year on, I am already excited about returning to the same course where it all began. This time I will be aiming for a PB, not to avoid the hospital A&E department.

The next nine months is about getting to the marathon starting line. If I get there, I know the cause and the crowd will help me every step of the way.

If you are interested in finding out whether or not I make the start – let alone the finish -you can follow my running adventure (races, training, marathon tips, inspirational runners and runs around the world while travelling) at makearunofit.wordpress.com.

My new blog is my way of moving forward.

This blog, however, will always be a reminder of just how far I’ve come.

If you would like to sponsor me to help me reach my whopping charity target, please head to my charity page. Thank you so much for your support. It means the world to me.

Breast cancer lesson 170: Tis the season to wear winter hats

On By Jackie ScullyIn Charity, Chemotherapy, Reflections on cancer2 Comments

It seems only fitting that my hair should be entering its ‘elfin’ phase as the season of advent begins. Anyone who knows me well knows that Christmas is my favourite time of year, so I am delighted that I don’t just have hair, but I also look the part. It isn’t yet in need of a cut, but for the first time in a long time, I don’t look like a sick person. And, you know what? That’s a great feeling.

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People keep asking me whether I am going to go back to the basic bob I sported for a good six years. The answer? Absolutely not. While I think I need a little more up top so that Duncan stops calling me ‘boy’, I don’t think it will be too long before I am declaring my hairdo an official style. I would never have taken the risk and cut it this short had I not been forced into it. But, now I don’t think I’ll ever grow it long again. Wash and wear is something everyone should try!

It may sound strange, but when I look in the mirror and see my nearly-cropped-but-not-quite hair, I see a side to me I actually quite like. It’s a side of me that’s strong. It’s a side of me that knows how to fight. It’s a side of me that isn’t afraid to face the opposition in front of me. It’s still a little vulnerable and sensitive, but it’s a face that says if I can take on death, I can take on anything. And, now that I am firmly rooted back in the real life, it’s a face of which I need to be reminded.

There is another plus side to having short hair, however, that I hadn’t fully appreciated until now and the beginnings of what I call winter. With less than an inch on my head, even the hot flushes can’t stop me from feeling the cold. That’s why this weekend, I stepped out in my first ever winter hat that isn’t a bobble hat or knitted beret. Yes, with no pom pom in sight, it was just me and a winter cloche-style number. It’s not a hairloss hat. It’s a high street hat that I have the confidence to wear because of hair loss. Because, let’s face it, if you can rock bald, no other headwear will ever really raise an eyebrow!

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The furry addition to my wardrobe is yet to make it off the coat hook, but I am excited to have progressed from tea cosy to something with shape!

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I appreciate this isn’t particularly cancer-related, but after having had so much fun with Breast Cancer Care’s Headstrong service and enjoyed a summer season of head wear, I felt winter needed its moment in the spotlight. I am still in my summer scarf and coat, so hat wearing does constitute news in my book.

Talking of Breast Cancer Care, I have just enjoyed my first ever carol service in London – and what a wonderful service it was! Candlelight, beautiful singing, lovely speeches and even a tasty mulled wine and mince pie. It was on my brighter life list and I am delighted to have ticked it off!

Thank you to this amazing charity for the most magical start to advent I have ever had!

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Breast cancer lesson 154: Believe you can and you’re halfway there

On By Jackie ScullyIn Charity, Happiness, Reflections on cancer1 Comment

What makes a great Sunday? Giant boob costumes, pink headbands, a cling-filmed rads-blasted boob, running shoes, a dose of determination and a celebratory pub lunch that’s what!

Yep, that’s right. We completed the 10k. And, with balloon-filled boobs on our backs, we did it in style.

Thinking back to yesterday’s aims, I am glad to report I finished in one piece with no missing body parts and we (by which I mean Fran, Sam and I as Duncan was up with the ‘running elite’) shaved off 12 minutes from the chemo run time. I think it’s fair to say when I pushed for the finish (I even had a bit left in the tank after three hills) imagining all of the amazing people fighting cancer on a daily basis – and all of those who have supported my fight – I couldn’t have been happier.

Thank you for believing in me, running with me and pledging drinks to help me raise money for such an amazing cause. I couldn’t have done it without you!

This is one finish line I won’t ever forget. Just one more active treatment finish line to go… tomorrow.

One sleep to go!!!!!!!!!!!!!!!!!!!!!!!

Here’s the photographic evidence:

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Breast cancer lesson number 123: Take the first step and see just how far you can go

On By Jackie ScullyIn Charity, Chemotherapy, Exercise and breast cancer1 Comment

If you want a reminder of all that is good in the world, then you just need to visit London on a day when the streets are packed with charity runners, not commuters and cars. Yesterday, I, along with Duncan and three friends, took to the city streets to do our bit for Breast Cancer Care. I had convinced myself we’d be touring the landmarks and stretching our legs. In truth, it was a whole lot harder than that.

Having only done the 5k Race for Life many many years ago, I had forgotten just how inspiring and amazing a crowd of runners and spectators can be. Running with my close friend Fran, I was overwhelmed by the kindness of those around us. I thought the spectators would give us a lift (which they did), but I had no idea the runners would be quite so encouraging. We were tapped, squeezed, blessed, thanked, congratulated and applauded. At one point, I was even kissed by a fellow runner, which was slightly disconcerting and astonishing. I thought I was going to trip with the shock of it all and I did well up on more than one occasion.

I am delighted to say that we jog/ran about 9km of the route and walked the other 1km. At times it was exhausting (at 3km I thought I’d never make 7km let alone the full 10km), at times my hips were hurting (thankfully, my body is back to normal today so no harm done) and, at times I felt like the tank was pretty much empty (even though I had had breakfast and a trusty banana). But, just thinking about all the amazing support, friends, and those waking up to face cancer every day, kept me focused and got me over the finish line.

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The moment we crossed the finish line is a moment I will never forget. It wasn’t graceful and I can’t say I had a massive spurt at the end. It was special, however, because it marked the end of a journey that, at times during chemo, I thought I would never complete. It was my mountain and I’d climbed it. It feels amazing to have raised money for a worthwhile cause (between us we’re up to about £3,000 in sponsorship) and achieved something for myself at such a difficult time.

I am glad to report the legs, PICC line and heart are still in tact and the head feels refreshed after all that rain. It was hard. But would I do it again? Absolutely. Just maybe not tomorrow!

To top it off, I got home to find a wonderful friend had sent me a book all about running to inspire me to keep going. It was perfectly timed and is something I will both enjoy reading and treasure forever.

So thank you for your messages of encouragement, your tips, your sponsorship money, your Facebook likes and your unwavering support. Thanks to the amazing small boobs, big smiles team for running a great race and joining me on the course. Thanks to all the kind strangers who gave us a boost with their words of encouragement (and kisses). Thanks to Breast Cancer Care for being a superb motivator. Thanks to my trainers for not giving up even though they’ve seen better days. And thanks to my body for going the distance. There were times when I thought I wouldn’t make it (I had my acute oncology card in by back pocket just in case). But, I am so happy I did!

If you’re hesitating over filling out an entry form or worried about whether or not your trainers will make it round a course in one piece, I would urge you to apply for something soon. It was such an amazing discipline and gave me a reason to get out of bed every single day (even when the pain was willing me to stay under the duvet). It has been great for the mind – and the weight management. And, it is the reason I have been smiling for the last 24 hours.

You don’t have to be fast to call yourself a runner. You just have to try and take that first step. Yesterday I was runner among a field of amazing runners. And, all I can think about now is when can I do it all over again?

If you have any suggestions for my next challenge, please let me know. And, if you fancy joining me, you know where I am!

Breast cancer lesson number 122: It’s not the finish that matters. It’s the fact you had the courage to start

On By Jackie ScullyIn Charity, Chemotherapy, Exercise and breast cancer1 Comment

I have just been safety-pinning my race number to my running top and arranging meeting times with friends and, I have to confess, I am so excited about tomorrow’s 10k.

Funnily enough, this feeling has little to do with the race itself. Reaching the start line alone will mean more to me than registering a time. That’s because, when I signed up for the race months ago, I never thought I’d make it.

Up until I started training, I had never run more than a 5k. I did the Race for Life many years ago and it was enough to give me the groin strain that eventually landed me on the operating table having major hip surgery in 2007. I think it is fair to say I don’t have runner’s legs (or runner’s anything for that matter). And, I think from the looks given to me by my medical team, trying to develop them when your body is being systematically destroyed and rebuilt with chemo drugs, is a pretty odd thing to do.

For a runner, 10k is a bit of lunchtime exercise. For me, it’s a marathon uphill on cobbles with no trainers. Just training for it, however, has given me strength, confidence, a reason to get out of bed and, most importantly of course, slightly better thighs :-). Running (by which I mean jog/walking, but running sounds better) has been my lifeline and my motivator. It has given me space to think, dedicated me time, the justification to eat a few treats and the energy and strength to kick cancer out of the park. Put simply, running has made me happy.

When I submitted my entry, I remember thinking this run (if I get there) will be a fantastic way to celebrate the end of chemo. I cannot believe this run is tomorrow. Every step will be on step closer to the end of active treatment (which I am hoping will be the end of September). Tomorrow’s finish line isn’t the real aim. It’s the finish line at the end of radiotherapy that I am aiming for. I know running will get me there.

When I stand on the start line tomorrow I won’t just be thinking about how far I have come (both physically and emotionally). Tomorrow, I will be running for my life and for the lives of all those who have been affected by cancer.

Knowing that I will have close friends by my side, who have gone out of their way not just to train, but to raise money too, means everything. And knowing that I have received so much amazing support from friends and family will give me the motivation to put one foot in front of the other, when it gets tough. (For anyone worried about this from a medical perspective, I promise to run my own race and take it steady!) Thank you from the bottom of my heart for believing in me, giving me a reason to battle the bone pain, and helping me raise money for such a superb cause.

They say happiness in life comes from achievement with purpose. I think that’s pretty accurate. I would urge anyone trying to get fit – or just get out of bed every day – to set themselves a challenge that means something to them. It could just be a really small thing, but it might be that that small thing makes the biggest difference in your life. Trust me, if I can run around the streets of London with chemo drugs in my body, you can face your fears.

So, whatever it is you are doing at 9.35am tomorrow, spare a thought for Duncan and Rob (who are running through injuries to support the cause), Emily and Fran (who are mothers challenging themselves and helping a friend) and me (the girl with no hair who decided to make every day count not so long ago). I must also mention my physio who is running the race too. I hope we all get to the finish line in one piece, but I am just so happy that we will be standing on the start line together.

Whatever challenge you set, may it be rewarding and life-enhancing. I wish you every success.

 

Breast cancer lesson 121: Check those boobies and help stamp out late detection of breast cancer

On By Jackie ScullyIn Baking, Charity, Chemotherapy, Happiness, Pink hearts, Reflections on cancerLeave a comment

When I think back to the early days of my diagnosis, there is one thing that makes me shudder. It’s the fact that, even though I could quite clearly feel a lump, I nearly didn’t go to the doctors. I convinced myself the lump was all in my mind. I’m 32. I’m too young to get screened, so how could I possibly get the disease you screen for? Given the lump appeared to double in size between diagnosis and surgery, I know now that this blog might have read a little differently if I hadn’t.

Stage three breast cancer is curable. Stage four breast cancer is treatable, but will never be cured. I don’t know how close I was, but all I know is I will be checking myself from now on and for the rest of my life.

Ask yourself the question. How often do you check yourself (and men, with 400 diagnosed in the UK every year, that means you too)? If the answer is never, read on. If the answer is monthly, then congratulations, but please read on too because you could be quite useful. And, if the answer is somewhere in between, then that’s good, but there is still some work to do.

For those who have been reading this blog and who know me personally, you’ll know that I am trying to make every day count, rather than counting down the days until the end of active treatment. It’s hard, because I don’t know how I am going to feel from one day to the next. But, it is so amazingly rewarding and it gives me a reason to smile every day.

That’s why I won’t be sheltering from the rain this evening, but will be heading out to meet Barnes WI to discuss breast cancer awareness for the charity CoppaFeel. You’ll have heard me talk about CoppaFeel (www.coppafeel.org) and its inspiring founder Kris before, but basically, the aim of the charity is to get people checking their boobs, recognising the signs and symptoms of breast cancer and going to the doctor if they spot anything unusual. It’s a simple message, delivered in a fun way through presentations and giant boob costumes. But it’s a life-saving one too.

Because it’s the WI and because I love baking, I have cooked up a cake in the shape of a CoppaFeel badge. I love this picture, because it reminds me of my own little and large boobies (and is of something edible). Of course, the difference isn’t quite so marked, but you get the picture! I have put buttercream in the victoria sponge, which I know is a sin in some parts. Let’s hope I am forgiven for going off piste with a Mary Berry special.

If you’re keen to ‘cop a feel’, but are not sure how, then here’s a handy guide: http://coppafeel.org/boob-check/. The key thing to remember though is that there is no right or wrong way to check. You just have to get to know your boobs, know what to look for, and check anything that doesn’t feel quite right to you. You’ll know your body better than anyone else, so you’re the best judge when things change.

And, if you think you don’t have time or will easily forget, then why not sign up to the charity’s free text reminder service (after the first text which is charged at standard network rate in the UK). Just text ‘Boobettes’ to 70300 to get started.

If you’re inspired, then check out the latest ‘What normal feels like’ boob campaign (http://coppafeel.org/whatnormalfeelslike/). The idea is to extend the range of words people use to describe their boobs (when asked most people, say ‘big’, ‘little’, ‘medium’ or ‘flat’) and help people get closer to this rather wibbly part of the anatomy. So, have a good feel and then tweet your findings to #WhatNormalFeelsLike. I think of mine as ‘jelly’ and ‘belly’ for obvious reasons.

I’ll never know whether or not checking earlier would have saved my boob from surgery, my veins from chemo and my skin from radiotherapy. But, what I do know is that checking when I did on Christmas Eve saved my life.

So, please, do one thing for me today. Grab your boob and encourage the person next to you to do the same. You might just save a life.

I’m off to encourage a room full of women to do the same. Wish me luck!

Breast cancer lesson number 107: Cherish those who hold you up!

On By Jackie ScullyIn Charity, Chemotherapy, Happiness2 Comments

You could be forgiven for thinking that someone with chemically-induced pains, thinning eyebrows and no tastebuds, has every reason to not feel happy – let alone lucky. But right now, sitting here on the sofa I feel like one of the luckiest people alive. That’s got nothing to do with the fact I am far from a bar showing the hotly-anticipated England World Cup game tonight and everything to do with the fact I have spent the day being reminded of just how beautiful this little world of ours really can be.

Ok, so it wasn’t your average supermarket shopping and washing Saturday. I was actually at a CoppaFeel training day for The Boobettes. As those of you who’ve read lesson 104 (click here for a recap) will know, I have started volunteering for charity CoppaFeel to help amazing founder Kris Hallenga (who is living with advanced breast cancer herself) and her small-but-perfectly-formed team in their mission to wipe out the late detection of breast cancer. Today was my official induction and I have to say, I haven’t stopped smiling.

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I thought I’d learn a lot. And I did, which was fantastic. But, what I didn’t anticipate was just how inspired and moved I would be by everyone I met. From mothers and teachers to singers, knitters and writers, this was a meeting of driven, passionate and beautiful people all united by one common cause, and I felt so humbled to be in their company. I came away thinking I would never have met these people if I had never been diagnosed (I am just not cool enough it has to be said). But, I am so so glad I did. Cancer hadn’t made these people beautiful. They were already that way.

As a quick aside, we were asked to name our boobs at the beginning as a way of breaking the ice. Mine are called cupcake (left) and muffin (right). The reason? Well, I love cake, I love baking, I feel my new right boobie is made up of all the amazing cake and chocolate gifts donated to me before surgery and the right continues to outgrow the left due to it remembering its origin (hence the difference in baked products). Just don’t ask me for the recipe! 

My great day didn’t end there. I drove home via a close friend’s birthday and seeing her face as I arrived at the table made me realise just how important it is to make the effort for the people you love. I couldn’t drink, I couldn’t enjoy the pizza or the homemade cakes prepared by her kind friends, but I could enjoy the company (most of which was people I’d never met who welcomed me immediately and didn’t say a word about my funny hat or the tube poking out of my arm) the chat (theatre, cake, more theatre, schools today) and a hug with my wonderful friend.

But, my great day didn’t end there. If we skip over the injection (which I deliberately took before my food so as to treat myself immediately afterwards), I got home to find a beautiful surprise on my doormat. Back at Breast Cancer Care’s Younger Women Together event in May (click here for lesson 87) we were asked to write a postcard to ourselves that would be posted to us after the event. While I found the whole event inspiring, I didn’t write about my experience but about the words of a beautiful young mother I met, who told me a great story about reading to her child throughout treatment. She often read the story We’re all going on a bear hunt and told me the words took on a whole new meaning for her. She said: ‘Cancer is like a bear hunt. You can’t go round it, you can’t go over it, you’ve got to go through it.’ I wrote this down and added: ‘So keep going’. I knew there would be tough times ahead when I wrote it and I thought it would make me smile. It actually did more than that. It reminded me of yet another wonderful and kind person introduced into my life because of this life-changing disease.

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But, my great day didn’t even end there. While making myself dinner I noticed a tupperware box filled with ginger biscotti that a friend had made and sent via Duncan. I am now munching my way through the tub and am delighted to report that I can actually taste them – and they taste wonderful. This box didn’t make me smile because it was filled with tasty goodies (although that certainly helped). This box made me smile because it reminded me that not only have I met beautiful strangers along the way, but people I already knew to be beautiful have become even more so (even though I thought that wasn’t possible). I never thought I would cry over a well-baked biscuit. But I just did!

But, my great day didn’t even end there. I check my phone and find on it a brilliant message from my sister-in-law about a book she had just picked up for her son. It’s called The Okay Book and it’s packed with great messages such as: ‘it’s ok to try new things’ and, amazingly, ‘it’s ok to have no hair’. I couldn’t agree more and I continue to smile at the thoughtfulness of this lovely lady.

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As a self-confessed perfectionist often on a mission to help others, I think I have spent too much time trying to be the best I can be and not enough appreciating just how amazing those around me really are. I feel truly humbled by old, new and hopefully soon-to-be friends (you know who you are)!

So, to all of those people who go out of their way to be kind, thoughtful, generous and basically amazing on a daily basis, I want to say thank you for being you.

I’ve had a wonderful day just by being reminded of how many of you there are!

Breast cancer lesson number 104: Small steps can make a big difference

On By Jackie ScullyIn Charity, Chemotherapy, Happiness4 Comments

If you’d asked me at about 4am this morning, what I hoped would be my achievement of the day, I would have said getting out of bed. With muscle aches, bone pain, a sore throat, tingling in my toes and my feet and a continued sense of emptiness, I woke up today – or rather decided it was morning – thinking it might be just one of those days when it would be ok to lose myself in a good book and a packet of painkillers and try again tomorrow. Sat in the evening sunshine with a smile on my face, however, I couldn’t have been more wrong.

There are two reasons why I made it out of my pyjamas and decided to fight the fatigue. Firstly, I had a dentist appointment. Usually, just the thought of those blue gloves and shining implements would be enough to tempt me back under the covers. But, having looked after me so well before chemotherapy, I felt I really should make the effort (especially given the surgery is about two minutes from my front door). It was a rather nice experience in a way, although I confess this had less to do with the shiny tools and more to do with the fact the chair worked wonders for my pains, almost hugging my body as it tilted me closer to the dentist. You know it’s bad when you look to the dentist for a bit of comfort!

The second reason is a little closer to my heart. Today, I had a rather important message to deliver and I’d promised myself I would do my utmost to get out of my fluffy slippers and deliver it – pain or no pain. And, that’s exactly what I did.

So, at 1pm today, I wasn’t surrounded by cushions, but a group of business women on their lunch hour all waiting to hear what I had to say about boob checking and why ‘copping a feel’ might just save their lives.

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If you’ve been following my journey you’ll know that I took the decision early on not to count the days until the end of active treatment, but to make every day count (click here to read lesson 68 where I explain a bit more). Giving back for me isn’t just about raising money, dusting off my trainers and hitting the city streets (although that is still crucial and you can still sponsor me here). It’s about using every bit of my experience to make a difference. Today that meant putting on a Boobette jacket for the amazing charity CoppaFeel and striking up a healthy conversation about boobs. Today that meant encouraging people to make boob checking a part of their daily lives. Today that meant burying my pain in a pill packet and reinforcing the work of dedicated founder Kris Hallenga, who has a treatable, but incurable form of the disease.

As I stood in front of those women, I knew that even if they didn’t remember the slides, the number to text or the latest breast cancer statistics, they might just remember the woman who stood before them with a hot flush, a funny hat and a desire to make a difference. I thought my message might be that little bit more powerful if I was speaking with toxic drugs in my system. I think I was right.

So, ask me what my achievement of the day is now and I’ll probably overlook the getting out of bed part (although I’ll admit, it was key). Back in my fluffy slippers now, I can rest easy knowing I did my bit to stamp out the late detection of breast cancer and give young women the confidence to go to the doctor. 

I’d like to say that had earned me a lie-in, but I have pilates first thing! Here’s hoping the pain starts to ease soon! 

NB: By the way, if you’d like to find out more about CoppaFeel and even get a visit from a Boobette at your workplace or school, please do get in touch. I am on Boobette training at the weekend, so will be a fully-fledged volunteer come Saturday!

Breast cancer lesson number 87: The answers to those burning questions are closer than you think

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

How often have you walked out of a consulting room partly reassured by all the questions answered and also partly plagued by the one or two things you just forgot to ask? By this, I don’t mean (if you’re anything like me) the questions you’ve diligently noted down in order to quiz any unsuspecting consultant? No, by this I mean the bigger picture questions that keep you awake at night or creep up on you when you least expect. In cancer land, that is a question like: ‘How long do you think the cancer was in my body before I found the lump?’ Questions that have no real bearing on the treatment plan in front of you, but questions that are no less important or interesting.

Since diagnosis day, I have been making a note of ‘random questions I wish I’d asked’ for a blog post at the end of active treatment. Currently on the list (in addition to the above) is ‘what do you actually do with the cancer you extract?’ Is there a cancer bin? Is it incinerated? Or, can they store it and retest it should there be developments in science? I know it sounds strange and I would guess the answer is incineration otherwise they’d have to take out extra storage space. But, it’s just one of those questions that for someone only recently inducted in to the world of cancer and unacquainted with the inner workings of hospitals actually finds rather interesting.

There is one question, however, that I have wanted to know the answer to ever since I came round from general anaesthetic number two after my egg harvesting.

And, on Saturday at Younger Women Together I got my answer. Younger Women Together is a fabulous and free two-day event held by Breast Cancer Care for women aged between 20 and 45 who have been diagnosed with primary breast cancer. Not only is it a great opportunity to meet and share experiences with other women in a similar position (none of which I have managed to spot in my own hospital), but it is also – with its expert speakers and workshops – the perfect environment within which to ask a few of those burning questions. I couldn’t recommend it highly enough to young women who are grappling with a diagnosis, undergoing treatment or trying to find their ‘new normal’ in the years that follow. I left inspired, moved and supported. And with my answer!

Starting with ‘the question’ here are a few things I am glad (and thankful) I now know (apologies in advance if I get any of the detail wrong, just passing on what I scribbled down):

Fertility question: If I am rendered infertile as a result of treatment, am I still able to carry the embryos frozen as part of my fertility preservation before chemo?
Answer: Yes! It may involve a few drugs, but just because your body has stopped producing eggs, it doesn’t mean you can’t carry one you’ve already harvested. Great news.

Fertility question: Can you test your fertility status before going onto Tamoxifen?
Answer: With difficulty if you are recovering from chemo and on Zoladex. It is possible to test for fertility using blood samples (for your hormonal profile) or scanning, but drugs can interfere with the results until your body is back to normal. Testing on Tamoxifen is also not advised due to the fact it stimulates oestrogen receptors in the uterus, while reducing oestrogen levels elsewhere and can cause temporary loss of or irregular periods, so may also give misleading results.

Fertility question: Can you predict the chances of someone losing their fertility during chemo?
Answer: The chances depend very much of the drugs used in the chemo regime. Alkylating agents (such as the C in FEC) are considered more problematic. Having said that, the C when used in the CMF regime seems to cause more problems than when it is used in the FEC regime. The Tax regime is less concerning. Statistics suggest women under 30 have a 5% risk of losing their fertility compared with a 50% for those between 36 and 40. I am somewhere in the middle! Age, drugs, dosage and a woman’s ovarian reserve (before treatment) help doctors predict an individual’s chances.

Fertility question: If you get pregnant after a cancer diagnosis, should you expect to be treated differently?
Answer: The short answer is yes. Chemotherapy can cause possible cardiac issues, which may not present themselves until pregnancy when the heart is working harder. This means echocardiography and closer monitoring is probably advised. There is a small increased risk of complications at delivery and a 30% increase in the C-section rate (although it is not known whether women are choosing this option as a way of taking more control). Where breasts have been reconstructed, pregnant women may wish to wear a prosthesis if the unaffected breast grows and leaves the woman feeling lopsided!

And a few ‘Did you knows?’:

1)    According to the latest statistics, 537 women between the age of 30 and 34 get breast cancer in the UK every year. That is compared with 2,899 women between the ages of 40 and 44.

2)    Even with a mastectomy, there is usually some breast tissue left behind in the affected breast.

3)    A new report just out has suggested that Phytoestrogens (basically oestrogen-like chemicals found in plant foods such as seeds, beans and grains) can reduce the risk of cancer.

4)    Omega 3 can help with joint inflammation and chemo brain (or memory issues)!

5)    Valerian can help with sleep problems while on chemo.

6)    Figs contain calcium

7)    And, wise words from speaker and fellow cancer survivor Kelly Short: ‘Don’t think about yesterday, you were a different person then.’

8)    www.insurancewith.com is a useful insurance provider for those looking to travel with a cancer diagnosis.

There was also plenty of exercise-related material I will save for another day. As you can probably tell these two days have enhanced my life – and my understanding of the illness I now face. If you’re a young women with a breast cancer diagnosis, I would urge you to book on today for a strong dose of inspiration, motivation and practical advice. Click here to find out more.

And, if you have a burning question that you really want answering, why not post it here (as long as it is not ‘what is the meaning of life?’). Someone out there might know the answer, or, if it’s cancer related, I might just be able to add it to my list once I have summoned up the courage to find out which bin my cancer landed in!

NB: There is a whole other side to the event that I feel it would be wrong to touch on in a blog and that’s the amazing and wonderful women who sat alongside me over those two days. How amazing it was to sit among women who didn’t know the me with hair, who understood what it was like to spend a night awake with nothing but a hot flush for company, knew how to navigate the terminology and side effects that come with the words breast cancer and understood the importance of a smile. Less a support group and more a practical and lively forum for sharing experiences. I feel privileged to have met these amazing women.

Breast cancer lesson number 68: Don’t count the days until the end of active treatment. Make every day count.

On By Jackie ScullyIn Charity, Exercise and breast cancer, Happiness2 Comments

This weekend I went for a run (although I guess jog/walk might be a more accurate statement). Ok, so I realise that in most households, this wouldn’t be headline news. But, if I tell you that, due to my hip, this is the first time in more than a decade that I’ve actually given my trainers more than just a light workout, you’ll see why it’s pretty significant. I’m slow, but at least I’m lapping everyone on the sofa.

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One of my biggest fears throughout this entire process is weight gain. I’ve been there. I’ve got the T-shirt. I gained more than a stone after hip surgery. And, I remember how much it hurt me when the clothes didn’t fit and the scales wouldn’t lie.

I went into chemotherapy with a body bruised from major surgery. Chemotherapy (contrary to popular opinion) does not tend to make you shed the pounds. The combination of steroids, appetite and fatigue-related side effects has led to people gaining stones not pounds. I say, not this time. The side effects have been kind so far, so I am taking advantage. Cancer already messed up my wardrobe once, and once is enough.

I am, however, not just running to keep the weight off. Every post-surgery recovery step I take is a step with a purpose. On Sunday 13 July I will be dragging my PICC line and my wonderful fiancée around the streets of London to raise money for Breast Cancer Care. Yes, it’s just 10k. Yes, it might sound more like a sightseeing tour than a serious race. But, for someone with a hip full of metal and chemotherapy drugs coursing through her veins (I will be 5 cycles in by race day) this is my iron man.

I am not a runner, but I am determined to give it my best shot to raise funds for a charity that has not just provided the literature to help me make informed decisions about my treatment but also given me the confidence to smile through hair loss. They have already done so much for me and I don’t want to wait until the end of active treatment to do something for them.

This charity – along with two school friends who reconnected with me earlier this year and are running the muddy version of the Race for Life to help fight cancer – is my inspiration.

Why run if I am not a runner? Running is my nemesis. Growing up I was teased for the way I walk (a walk I still have). In my twenties, I was worried I’d never run again when my leg started to fail me. I entered this race in 2006, but my hip pain meant I never made the starting line. If pain has done anything for me, it has made me a fighter. I will fight every step of this course for every person who has battled cancer and for every person with hip problems that can’t run the distance. This time, only the finish line will do. It won’t be fast. It won’t be graceful. It will hurt. But, if I can smile through eight months of cancer treatment, I can smile through this.

So, whether you can donate a few pounds, fancy coming to London on race day to cheer us on or feel like running the course too, I would be so grateful for any support. Click here for Justgiving page link if you’d like to donate or send me an email on jackie_scully@hotmail.com if you’d like to get involved on race day. Thank you from the bottom of my heart.

Together we can help more people smile through cancer.