Tag: Breast Cancer Care

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 177: Give a girl the right pair of shoes and she can conquer the world

On By Jackie ScullyIn Exercise and breast cancer, Moving forward, Reflections on cancer2 Comments

Ok, so Marilyn Monroe probably wasn’t talking about a pair of running trainers when she came out with the above quote. But, when you’re standing on the starting line of a half marathon, the right pair of trainers can be the greatest of companions.

I can’t say I conquered the world on March 1 running around the streets of Bath in a giant boob costume for fantastic charity CoppaFeel. But, given I started the race with a hip injury that threatened to stop everything in just a few steps I certainly conquered something that day.

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I’d like to say the hip injury was as a result of extensive training and my two 13-mile practice runs, but the reality is actually a lot more amusing. The pain in my quad muscle (which felt like rock just moments before the race) was caused by sitting in a cross-legged position for too long in a silent meditation. I can hear you now. Jackie Scully can take on cancer, smile through treatment and run 13 miles for fun, but struggles with that challenging activity of sitting. It’s funny now. It wasn’t last weekend.

The run was emotional for more reasons that my clicking hip and aching groin. While comfy trainers can be the greatest of companions, so, too, can two amazing friends Alex and Fran. They stuck beside me, encouraged me with every step and gave me the confidence and the strength to get me to the end. I knew they could run faster, but the fact that they didn’t is something I will never forget.

Those of you who have followed my running journey will know that it was fantastic Fran who kept me hydrated and positive when I ran my first ever 10k just a week before my last chemo. It was Fran who lined up next to me for my next 10k just hours before the last day of active treatment. And it was Fran who stopped when I stopped and laughed when I laughed last Sunday – and even found time to dance along to the music being played. She says the running has been great for her. I am so thrilled, because her support has been great for me and I feel truly blessed to have her in my life.

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Then there’s Alex. Last year, my wonderful school friend ran the Bath Half for CoppaFeel after her mum was diagnosed with breast cancer. Her sponsorship page reminded me of a great friendship we’d once had and her amazing can-do attitude. We met up after seven years apart last summer and it was then that we vowed to support the charity that brought us back together in our home town this year. Last Sunday, it was Alex doing the chanting, encouraging and the energy gel supplying and I knew when I stood beside both her and Fran waiting to cross the starting line that we would find a way to get to the end together. (We were also joined by the lovely Kelly Packer and Amy Sparks on the course, both schoolfriends I hadn’t seen for 14 years!)

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I may sound dramatic, but when your leg is giving way and you can’t walk without pain going in to a half marathon, it takes a lot to even start. Thanks to a knowledgable physio, I knew I wouldn’t end up in my hip surgeon’s office with a rather guilty look on my face, so I knew it was up to my mind to convince me I could get round.

And convince me it did. Two hours and 30 minutes later (we ran all the way barring two stretching stops), we crossed the line holding hands only to fall into the arms of a Telegraph journalist. (For those of you with a copy of Friday’s paper, head to the back page of the sports section.) We also made the local Bath Chronicle too. And, the regional BBC news station took this as we crossed the line (it hurt that much)!

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My mindfulness course (the reason for which I was sat in a cross legged position for so long) may have brought on an injury, but it has taught me a very valuable lesson over the last eight weeks. Pain is inevitable and not something you can or should look to avoid. But, pain doesn’t have to lead to suffering. If you don’t resist it and accept what is happening to you, pain is just pain. I know what pain feels like, I know how to ride it out (and medicate against it) and I am proud of myself that I can run 13 miles aware of it, but not ruled by it.

You could say I was foolish given my hip history. I hope, however, you will just see me as even more determined.

How can you stand in a charity tent with Kris and Maren Hallenga (the amazing sisters who spend every waking moment trying to wipe out the late detection of breast cancer as part of CoppaFeel) and not vow to make it round.

They inspire me, it was their charity that brought me back to Alex, it is their charity that has seen me talk about boobs more times in the last year than I thought possible and it is their story that is the reason we should all feel happy to be alive.

If you haven’t found the right shoes to conquer your world, it’s about time you went shopping…

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 169: Why getting organised helps me get closure

On By Jackie ScullyIn Moving forward, Reflections on cancer2 Comments

This weekend has been dedicated to the cancer-equivalent of a spring clean. I have cleansed my cupboards and drawers of sleep caps, hairloss hats, information leaflets, running medals and PICC line covers and I have, at last, sealed the cancer capsule I wrote about in lesson 158.

It was long overdue, but it was as liberating and therapeutic as it sounds.

Getting closure is the subject of my latest blog for Breast Cancer Care (which will be uploaded to their site soon, but here is a link to the others if you’re interested). And, sealing that Cancer capsule is a big part of it.

For those of you wondering what I mean by a Cancer capsule, it’s this. Over the last eleven months I have accumulated a lot of cancer-related ‘stuff’. Of course, the natural thing would be to donate everything to charity so that others can benefit. But, the trouble is, the last thing I gave to charity was a lightweight dressing gown I wore in hospital when I had hip surgery in 2007. I hadn’t really worn it since so, on January 1 2014 it left the house – just a few weeks before I had to buy another one! I am a little superstitious, so giving the things away that kept me going sadly isn’t part of the post-treatment plan.

So, that’s why I decided to create a cancer capsule – a box I can fill with hats and sleep caps and PICC line covers and tuck away in my house as a little insurance policy. It started life as a shoe box and is now a giant pink plastic box (with a lid) packed with everything from my boob cushion and plastic shower sleeve to the running vest I wore when I completed my first ever 10k in July this year.

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Yes, it is practical (I would never want to rebuy these items if it ever came back), but by filling it with every single card, note, letter, good wish, running medal and fact sheet I have received this year, it’s a box that says: ‘I can do this’, if I ever have to ‘do this’ again. This box is my story. With the words ‘be brave, be bold, be you’ stuck on the lid, I know that if, one day, I have to open it again with tears in my eyes, I will be reminded of both the support I had and the strength I found. This box has everything I need should I have to smile through dark times once more.

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Of course, cancer-related organising does go further than packing old items away. This little pill pot organiser is my new best friend, making sure I take my Clonidine and Tamoxifen every day without fail – and making sure I don’t accidentally overdose in the process. It’s more colourful than the clinical packaging and, thanks to a card packed with Boots Advantage points, it didn’t cost a thing.

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Today I declare myself free of cancer clutter!

With the wig burning and the capsule tucked away out of sight, I know I am getting closer to that wonderful thing called closure. I’m not there yet, but I know one day I will be.

My cancer capsule is packed away – and so too, for now, are my memories.

 

Breast cancer lesson 162: Why it’s hard not to laugh in a nipple consultation

On By Jackie ScullyIn Breast reconstruction surgery, Reflections on cancerLeave a comment

The trouble with attending a hospital appointment on your own (don’t worry, I am not throwing caution to the wind after lesson number one, these are very routine appointments), is that you have no one to cover you if you need to pop to the loo. That’s why, I spent the best part of my 90-minute wait on Monday working out the best time to take the chance – only to realise it takes less than a minute to get back in the waiting room if you’re focused.

The reason for this latest waiting room visit was to meet the plastic surgeon and discuss reconstruction phase two. Phase two is, of course, the ‘return of the nipple’, if we see phase one as ‘destruction of the boob’. That was my understanding of the meeting anyway, so I was amused when the registrar took one look at me and asked me how the chemo was going! And I thought I actually had a bit of hair.

Now we are onto the cosmetic side of the job, I am finding it hard to treat the whole thing as surgery. I diligently took my top off on demand and smiled as we went through the usual: ‘we can tidy it up of you’d like to look even on both sides’. My stock reply tends to be: ‘I am very happy with my set (asymmetrical as they are) and I wouldn’t consider another general anaesthetic at this stage. Plus, the right one will grow and shrink as my weight fluctuates, so I will always be pretty lopsided.’ It is very kind that plastic surgeons don’t want me to be wonky, but I am just happy to be here – imperfections and all! Trust me, if they fix the boobs, their perfection would just look out of place.

I did consider stopping without a nipple given I am happy with my fleshy mound. But, I feel like the journey won’t be complete without finishing it off. It will be a permanent ‘outie’, so I think it will be padded bras all the way after surgery. It will also be tattooed so that it matches the left side.

Today was quite interesting in terms of reconstruction options. It seems there are two ways to reconstruct the nipple (or should I say we only discussed two). The first is a local flap, created using existing skin attached to the reconstructed breast. The only downside it seems is the fact that it would leave a little scarring to the sides of the nipple, but this would be covered up by the final tattooing stage of the process, Yes, I didn’t think it was enough to get radiotherapy tattoos. Now I want to tattoo my boob.

The second option is to remove skin from another area of the body to create the ‘protrusion’ (sounds a bit scientific for a boobie). The downside to this procedure is the fact that there would be two wound sites and the fact the grafted skin may not take to its new home.

For me, this didn’t feel like decision that would be hard to make. I have opted for the local flap and will take the extra scarring! I don’t fancy carving up any other body part for an extra bit of skin. It is already part belly. It certainly doesn’t need to be part anything else.

So, in six months time (you have to wait for the boob to settle after radiotherapy), I will, at last, complete my reconstruction. It’s a local anaesthetic. It’s a quick procedure. And I would bet money on it being one of the strangest experiences of my entire life. (I must admit, the consultation was pretty funny, with the highlight being the young doctor poking my boob with this finger to point out the position of the nipple. I kept thinking to myself, I haven’t been nippleless that long!)

It certainly is amazing to see what these plastic surgeons can do. I just never thought they’d be doing them to me!

NB: In other news, as part of Breast Cancer Care’s #hiddeneffects campaign for Breast Cancer Awareness month I put together a piece on smiling through cancer. Click here if you’d like to have a read.

Breast cancer lesson number 119: Do more of what makes you happy

On By Jackie ScullyIn Chemotherapy, Happiness4 Comments

Thank you. Thank you for following, liking, commenting, clicking, finding me by typing ‘boobs cycle door’ and ‘boob bald’ (yes really!) into Google and joining me on my cancer journey now and again. Thank you, because by reading not just this post, but the thousands of words that have come before, you have given me the confidence to write again and a reason to smile.

When I set out on my travels through active treatment, I was determined to do more of what I love. And, by blogging about everything from leeches to dark nail polish, I have done just that. But, for me, this blog has been much more than a playground for positivity and a chance to reflect on my time in hospital. It has helped me rediscover all that is beautiful in the world and indulge my passion for creativity. Cancer tried to take my life away, but has (inadvertently) through inspiring me to blog and celebrate life, actually given it back. And things look even brighter than before.

Cancer has taught me to do the things that make me happy. And that is something I wish for you too (happiness, not cancer that is). I have a new to-do list packed with positive things and it is a real joy to tick off each one. Life has a habit of getting in the way and filling our days with its endless admin. But, take a step back, work out what it is that gives you a real boost (usually the thing you do to procrastinate) and I guarantee you’ll be able to find time to do a little more of it (or get started). Go on, I dare you! Life is too short to have a clean cooker and well-filed bills.

I am reading a book at the moment that says: ‘The real source of happiness can be stated in a word: achievement.’ This is something to which I can really relate. Sometimes the sheer thought of hard work or sitting down to complete a task can be enough to send me in the direction of another ‘boring-but-essential’ job (like laundry). But there is no greater feeling than the feeling of having really achieved something – especially when that achievement can actually help someone else. For me, writing is like that. It’s often hard to get started (I do have very clean clothes), but to finish brings me more pleasure than a long soak in the bath or perfectly-formed sponge (although that is admittedly a close second).

Throughout this process, I have wanted to use writing to help people (by which I mean not just other breast cancer patients, but also those seeking to reflect on and improve their lives). I hope I have achieved this in some small way through my blog. I am also delighted to say that Breast Cancer Care has just asked me to become a regular blogger for them, offering tips around a theme for others in my position. My first post on body image has just been published and I feel so thrilled to have the opportunity to try a make a difference. Here’s a link to the feature and I hope you will support me by having a read: http://www.breastcancercare.org.uk/news/blog/vita-bloggers/jackie

I have also been asked to write a few articles about smiling through cancer, which I hope will encourage people to seek out the positives at what is a very challenging and distressing time. Amusingly, I have just spent the day on a shoot for one feature. Little did I think when the hair started to fall that I would actually be welcoming a photographer into my house just three months later to take a shot of my bald head! But today, in my little corner of Greenwich, that’s exactly what happened.

For someone with a history of ‘red eye’ and a face that is currently sporting dry lips, few eyelashes, fading eyebrows and a sun-grilled cheeks, I was pretty worried I wouldn’t quite scrub up. But, the make-up artist, editor and photographer were amazing and so supportive and that’s why I am currently writing this with stuck-on eyelashes and a painted on smile. It makes me laugh that I have managed to spend my entire working life to date in publishing behind the camera (if we overlook a rather strange mock-mugging shot I was in in my first job – oh and the one of me on a motorbike with an oversized jacket). And, it’s only now, with no hair, that I am brave enough to face the lens!

Here’s a sneak peek of the day. I felt so privileged and humbled by the whole experience to be honest. It was also liberating to spend the day with my bald head in full view. I am so grateful to the lovely ladies who took the time to make the whole experience really special.

There was only one downside. I was stroking my head at the end of the session only to discover two lumps sitting there that I hadn’t noticed before. I tried for about 45 minutes to photograph the top of my head to see them and could only make out a bit of redness. Lumps when you’ve been diagnosed with cancer are never a welcome sight. I spent a good few hours feeling them and googling horrendous things and it was amazing just how quickly my happy day filled up with fear. Cancer does that. It enters your life. You fight it. But, no matter how hard you fight, the fear of it returning will live with you forever. Cancer makes it difficult to know what is and isn’t worth paying attention to. And, for someone still going through active treatment and not yet thinking about it coming back, today’s lumps (which I am sure are just bites or spots) are a harsh reminder that as much as I like to think I’m in control, I’m not.

Now I have stopped googling and have convinced myself there is no link between the dizzy spells, the near-fainting episode of last week and today’s lumps, I am smiling once more. That’s because I am writing, because I am picking out the positive parts of each day and because I am choosing to the do the things that make me happy. If anything, the lumpy blip, was the reminder I needed to tell me I’ve got my priorities right.

I have made a promise to myself to keep writing and do more of what I love. And, I hope that you can find the strength, time, energy and determination to follow your dreams too. We, none of us, know what is round the corner, so we owe it to ourselves to get the most out of every day.

Breast cancer lesson number 117: Turn your scars into stars

On By Jackie ScullyIn Breast reconstruction surgery8 Comments

Having spent most of my 32 years trying to creatively hide my tummy from the world (I’ve worn bikinis on rare occasions and was once asked to ‘put it away’), I am finding it quite amusing that, now it has a nice long scar right across it, people are suddenly rather fascinated with my not-so-fleshy midriff. Only recently was I at an event where two ladies (interested in their surgery options) asked me to lift up my top. And, as soon as you mention relocating your belly button over drinks, you can tell people are trying to work out just what is going on around your knicker line.

So, for one post only, I have decided to put you all out of your misery and flash my still-flat-but-not-for-much-longer-thanks-to-chemo stomach. For those of you who have stumbled across this blog or would really rather not become acquainted with my tummy (I wouldn’t blame you, it’s still a bit angry), I am tactically posting a pictures of the baked goods that are currently in my stomach first, so that they show up on your feed. To distract myself from the dizzy spells and peripheral neuropathy, I have spent the morning baking (and, of course, licking the bowl, which for anyone not connected to me on Facebook, is today’s #100happydays moment). (Visit lesson 112 here to find out more about my #100happydays project.)

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And, here it is ­– one big smiley face, which will fade over time (and after I have massaged a truck load of cream into it). You can also see the two drain marks just above my trousers, the angry little belly button and the mole (to the side of the belly button) that had been hiding under my boob until the surgery moved everything down. It’s flat, it’s happy (although admittedly it is a smiley face without eyes) and it’s all me. I am proud of my tummy and I am proud of this scar. It reminds me every day when I look in the mirror that I was stronger than the cancer that tried to take my life away.

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It seems I am not the only one happy with my new look. At my plastic surgery check-up on Monday, my breast reconstruction nurse and the doctor on duty were pleased with what I like to think of as my recent body enhancements! The doctor did confirm she thought the right one was larger than the left (I think they are quite fixated on making me even) and we did have a laugh about tops that exacerbate the situation. But, with radiotherapy planned, the nipple and tuck chat is now on hold until the autumn. By this time next year, I should be fully reconstructed!

Don’t worry, I won’t be making a habit of flashing the flesh. My tummy can’t be exposed to the sun for a good year at least, so it is now going back into hibernation. And, as for my new boob? No chance! And, for any ladies out there considering DIEP surgery, I would highly recommend it. While, at times, the recovery can be tough, the results are more than worth it.

Thank you surgeons for finding a practical use for my tummy fat, thank you cake and chocolate supplying friends for making the surgery possible and thank you tummy for healing so nicely. I will try not to feed you with too much cake in future, so you retain your shape just that little bit longer.

 

Breast cancer lesson number 102: It’s better to give than receive, particularly on chemo day!

On By Jackie ScullyIn Baking, Chemotherapy, HappinessLeave a comment

Having been awake pretty much all night on a steroid-induced high (thanks to the dosage being doubled), I wasn’t expecting today to be as productive or as enjoyable as it has been. Especially with the words: ‘Docetaxel cycle one’ ringing in my ears.

The good thing about steroids, however, is they don’t stop working when you wake up. With four more at breakfast, I was answering emails, sweeping the floor, clearing papers and popping my next batch of chemo cookies in the oven (this time using a recipe all the way from Germany) all before 9am. I could have run (well, maybe jog a bit) all the way to the hospital, but instead decided it might be wiser to conserve my energy and just take a leisurely walk to the train in the sunshine through Greenwich Park.

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For me, today was as much about giving as it was receiving, and that fact makes me smile. I handed over a tin of sugary ginger cookie treats to the cancer day unit and wore my Breast Cancer Care T-shirt to raise awareness of this superb charity (click here to find out what they’re up to or visit my Justgiving page to help me raise funds to support their great work). In return, I got a slow-release infusion of T (the drug is administered over a longer period, with no red syringes in sight), some anti-sickness meds (including miracle worker Emend), eight pre-filled syringes to start self-injecting on Sunday (to boost my immune system) and what I can only describe as the world’s largest sharps box! It needed its own bag to carry it home.

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How do I feel now? A bit tired, a bit anxious about how the next week will pan out, but otherwise fine. The calm before the storm is a strange place, and I just hope the storm doesn’t involve nausea, chronic fatigue, bone pain, muscle pain, mouth problems and peripheral neuropathy. I have survived the first part by not having an immediate allergic reaction to the new drug. And, I have done what I can to lessen the side effects. I have had some exercise, taken my pills, sucked on a rather strange mango and passionfruit (or at least that’s what it said it was on the packet) ice lolly while the drugs went in (it’s a bit like the cold cap for the mouth, but more bearable if you actually suck on something flavoursome) and am now relaxing in the garden with a scarf over my head and shoulders so I don’t get exposed to the beautiful sunshine.

The good news? The cookies went down well (so much so I couldn’t locate the tin), the cancer day unit makes me feel like I am returning to see old friends and, at last, I got the free lunch I have heard so much about. There wasn’t a lump of mash in sight sadly, but they didn’t scrimp on the ham. I even returned home to a wonderful parcel of hats from a new friend I met at Breast Cancer Care’s Younger Women Together event back in May.

I am strong, so let’s just hope I am stronger than the drugs currently working their way around my body.

Only time will tell.

Wish me luck!  

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.