Breast cancer lesson 183: Life after cancer is about making every day count

On October 29, 2016 By Jackie ScullyIn Brighter Life List, Exercise and breast cancer, Moving forward, Uncategorized1 Comment

It’s not every day you call up the mother of the bride to tell her that you’re getting married in trainers – and that she needs some too!

After waiting 13 years for a proposal, I don’t think my parents ever expected my partner and I to get married.

So imagine their surprise when I announced that not only would there actually be a wedding, but that they’d have to get up at 6am to be there – on the Cutty Sark, dressed to watch a marathon, that we would be running.

Three years ago, when Duncan proposed, I had visions of a Cotswolds country garden wedding with edible centrepieces and vases of alliums.

I didn’t own trainers.

Having had my pelvis rebuilt in 2007 and pinned with metal, I ‘d never experienced the feeling of being alive (and completely shattered) at the end of a run.

But, being diagnosed with breast cancer, just three weeks after getting engaged (not to mention being told by your oncologist that you are likely to gain three stone during chemo) did a lot to change that picture.

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I chose to run during treatment because I wanted to show my body that it can take a lot of things – forcing me to learn to walk again in my 20s and stealing my boob in my 30s – but that it couldn’t define me. I chose running because I knew it would be hard. I chose running because I needed to find a reason to get out of bed and feel the sun on my face. I chose running because I wanted to feel alive at a time when my body had other ideas.

With my nurse mum as carer, Duncan could be my running partner (by which I mean running in the same races miles ahead of me). It kept us going when circumstances could have so easily ripped us apart. Running changed the course of my days and, in so doing, changed my life.

This is a hard post to write at a time when I can put on my trainers but I can’t move forward. But, while I am injured right now and in the hands of surgeons and physios as they try to diagnose my pain, it is the dream of a cold day in April and the London Marathon that keeps me going.

When you’ve fought for your life, it’s hard to plan too far ahead and rest your happiness on one day in the future. So, when we started talking about our wedding earlier this year, I knew there was only one way to do it. There wouldn’t be an aisle. There wouldn’t be a first dance. There wouldn’t be a day in the Cotswolds.

Our wedding had to be a chance to give back, volunteer, thank those who have supported us and to remind the world that life may be hard but, by focusing on the little – and often beautiful – details of life, you can make every day count.

That’s why the ceremony is happening at 7.30am and the honeymoon will be spent on the Great Wall of China.

I know wedding planning is supposed to be stressful, but I thought that by cutting out the favours and the sit-down meal and focusing on charity it would be a little less involved.

Not so. With road closures, a running wedding dress being designed by the incredibly kind and brilliant Frankie Seaman (Professional Ice Skater from Dancing On Ice), a hen 10k run and a gel bouquet all part of proceedings, I know this will be an experience we will never forget.

I know a hip full of metal, superglued stomach and tummy-fat filled right breast (from mastectomy surgery), oh, and asthma, do not the best running companions make. I know that my next run could be my last (I haven’t ruled out walking it if I am not able to run again). I have been told – on more than one occasion – to find another hobby before I break myself completely (and I will if you let me run one more marathon).

But, when I’m running, I have everything to smile about and I certainly didn’t beat a life-threatening illness just to play it safe.

Our wedding isn’t just a celebration of love and life. It’s a chance for us to thank the people who helped us find our way back to happiness both during and after treatment.

We also want it to serve as a reminder to everyone going through difficult times – whether it be serious illness, or loss, financial difficulties or the daily problems of life – that there is a way to move forward.

If you’re reading this, you’re already on the journey with us. Welcome to the team!

If you’d like to support us please visit: bit.ly/2eSLaed

I will be also writing about the big day and beyond on my blog thisdayforward.org and via Twitter @Jackie8.

Breast cancer lesson 171: Here’s to the Christmas that changed my life

On December 23, 2014December 23, 2014 By Jackie ScullyIn Moving forward, Reflections on cancer3 Comments

Christmas Eve is one of my favourite days of the year. If I’m hosting, it’s a day in the kitchen cooking ham, whizzing up brandy butter and enjoying a Christmas movie marathon. And, if I’m not, it’s a long walk in the park, it’s chain tea drinking, and a couple of slices of chocolate log. It’s a day that is, in many ways, so simple. A day that doesn’t have to be anything in particular. It’s a day that never lets me down.

For those of you who have followed my journey from the beginning, you’ll know that’s it’s also the day I discovered a lump in my right breast in the shower (making this Christmas Eve my one-year lumpiversary). You could argue it was the day that ruined Christmas, poured cold water on the engagement that happened just a day later (after 13 years together) and cast a heavy shadow over 2014. But, you know what, that’s not how I remember it. Christmas Eve 2013 saved my life.

When I was sat in front on a fire with my parents just a few days before, I talked about the future, I talked about the fact that I had come to accept that I may never get married and may never have a child to call my own. I had been so focused on the next of life’s big landmarks that I had forgotten to enjoy and cherish the life I woke up to every day. That day, I decided I may not lead a conventional life – and that was fine. It didn’t, however, stop me popping open the champagne on Christmas Day and toasting a 2014 I thought would be filled with table planning, venue hunting and dress shopping.

When I look back, I know I thought Christmas Day was the day that had changed the course of my life. Truth is, however, it doesn’t even come close. While we have decided to recreate the whole event this Christmas (we still have the champagne so it would be a crime not to), I know I won’t be toasting a day one day in the future (2017 if Duncan wins the debate). No, I will be toasting Duncan for being the partner I want to wake up to and laugh with every day. I will be toasting my mum and dad and all they have done – and continue to do – for me. I will be toasting the friends that have made room for me in their lives and their thoughts. I will be toasting the charities – Willow, Breast Cancer Care, Younger Breast Cancer Network, CoppaFeel, Macmillan and the Haven – that supported me and that now fill me with such joy as I work to support them. I will be toasting my body, for being strong and letting the memories fade. I will be toasting the life I have now – a life that Cancer forced me to see – not the life I thought I wanted.

Tomorrow, I won’t be sad, I will be thankful. Thankful that I am here to cook another ham. Thankful that I have the chance to pull another cracker. And thankful that the future Duncan gifted to me 14 years ago when he decided to take a chance on me (not the future he promised me last year) is the future I am around to enjoy. The greatest gift of all is life and it is a gift I will never take for granted again.

Merry Christmas to you all. As you turn to a diet of mince pies and crisps and reflect on the year you’ve had, I don’t want you to think about all the things that didn’t work out this year or all the times life didn’t go your way. I want you to think about the fantastic memories and the moments (however little) that no challenge, serious illness or crisis in the future will ever be able to take away from you.

Raise a glass to health, happiness and the people that make you smile.

Because that’s all you’ll ever really need.

Breast cancer lesson 169: Why getting organised helps me get closure

On November 23, 2014September 3, 2016 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.

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.

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.

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 168: Why I am about to run for my life – and for charity

On November 17, 2014 By Jackie ScullyIn Exercise and breast cancer, Moving forward, Reflections on cancer9 Comments

One thing you may not know if you haven’t had the pleasure of being prescribed an oestrogen blocking anti-cancer drug is that Tamoxifen, my new friend for the next decade, has a nickname. It’s a bit too ‘rude’ for me to mention it here (you’ll just have to trust me that it isn’t nice), but let’s just say, it’s a nickname that only now I fully understand.

While I will be forever grateful that there exists a drug that can reduce the chance of my cancer coming back (and I really am grateful), I do just wish it could do its stuff without raising my anxiety levels (trust me, this pill can make the washing up seem like an uphill struggle), stealing my sleep and generally ageing me by about forty years. When I heard about people’s experiences of the drug I honestly thought that, after chemo, it couldn’t be that hard. But, faced with taking a potentially mood altering drug for ten years, part of me would rather endure another short-term course of the toxic stuff than have to ‘check in’ with my body every five minutes to make sure it’s in one piece.

Don’t get me wrong. I am still really happy and thankful I have my life. And, if this is what I have to do to prolong it, I will do it. But, I guess Tamoxifen (the effects of which I think are starting to kick in now my body is leaving the effects of chemo and Zoladex behind) is my daily reminder that, far from finishing the fight for my life, I am still very much at the beginning.

Which brings me to the title of this blog post. When I knew things were about to get tough before chemo, I hit the road with my, then, tatty trainers for the first time in a decade. I hit the road, not because I was a runner, but because I wanted to stay sane and counteract the weight gain. I did it for me (as well as raising money for charity) and I think it is one of the biggest reasons why I started and finished treatment with a smile on my face. Running (or more accurately, jog/walking) saved me this year. And, you know what? I think I need it to save me again.

I confess, I hate the thought of running. I even hate the getting dressed for running part. But, the feeling I get when I arrive back home after a jog through Greenwich Park is a feeling I wouldn’t give up for the world. It was that feeling that got me round the streets of London when I had chemo drugs running through my veins. It was that feeling that made me choose a run over a party at the end of active treatment. And, it is that feeling that I hope will help me over the finish line of my next, and biggest, running challenge to date. On March 1, I will be back on home soil running the Bath Half Marathon.

Whether my legs will go the distance is still a subject hotly contested at my family home in Wiltshire. But, while I can’t predict the future and second guess whether the hip problems that plagued my twenties will return, I know that I will give it my best shot. This time, it’s not about weight management (although I do get to eat more cake). This time it’s all about the mind and showing my body that, however hard it tries to bring me down with its cocktail of drugs, it will never take my spirit and my determination to succeed. However I do it (and it won’t be graceful), I will be crossing the line in March for every person who needs Tamoxifen to keep them alive. It seems a cruel joke that after nine months of active treatment, just when we all want a break, we should be faced with yet another drug-induced challenge. This is one challenge, however, I will overcome.

Of course, I am not just running for me. I am running for amazing charity CoppaFeel. Those of you who have been following the blog will know just how important CoppaFeel is to me. You just need to spend a few moments with twin sisters Kris and Maren (who founded the charity) to know just how special they are. They work so hard, with very few resources, in their fight to wipe out the late detection of breast cancer. Kris is dying. Maren has to watch her sister fight the disease every day. And yet, both are dedicated to making sure other people they don’t even know – or will ever meet – have the chance to enjoy a long and happy future. It seems to me the ultimate selfless act to give your life to helping others when you don’t know how much of it you have left. If that’s not worth a few quid, then I don’t know what is.

As with the last two races, I won’t be heading to the starting line alone. Back in July my wonderful friend Fran stuck by me (when I knew she could run faster) as I completed first the British 10k. She turned out again in September and has been persuaded to join me on this, no doubt, cold wintery day. She believed in me when I thought I had nothing left and, for that, I will be forever grateful. Duncan will be heading out too (we may even get him in a giant boob this time), although we probably won’t see him after the warm up. And, it means the world to me that my amazing school friend Alex will be returning to the course (after tackling it last year of CoppaFeel) to help me round. With that kind of back-up, I just have to hope and pray my legs don’t let the side down.

Running as a non-runner has been an emotional and amazing journey. This time, with winter training, double the distance to run and the same dodgy hips, we need all the support we can get. If you can spare just a few pounds to make that training (followed by mince pie eating) worthwhile, then please head to our Virgin fundraising page. Then all I ask is that you return to this page to post (as a comment) the song you think will motivate me, make me smile and remind me of you. I want to create a playlist of requests that remind me of the people who believe we can get there. I know that will give me the motivation I need to step out over the coming dark months even when the lure of Christmas lights and cooked ham is more appealing.

Together, we can help Kris and Maren make secondary cancer a thing of the past – and show Tamoxifen who’s really the boss of this body!

Thank you.