Breast cancer lesson 184: When you have a big enough why, you can endure any how

On March 20, 2017 By Jackie ScullyIn Exercise and breast cancer, Happiness, Moving forward, Reflections on cancer4 Comments

The last decade has taught me much about determination. Whether it’s finding a way to make it up the stairs before my hip reconstruction surgery, walk that first mile after mastectomy and tummy tuck (to build new boob) surgery, get to the end of my first 10k during chemo or make it to the marathon start line, life has forced me to the ground and I have had to use every last bit of strength to pull myself up again.

It seems only fitting, therefore, that we should choose to inflict another huge test of endurance on ourselves for our wedding and honeymoon – one that I have already been told by the experts is going to hurt, a lot!

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I write this post after a gruelling 19-mile run/walk/stretch fest to try and manage an injury and keep training for our marathon wedding and honeymoon trek. With my dad for company, there were genuinely times when I felt I could not go on. But, with every painful step came the reminder of something my dad said to me on a run back in January. He said: ‘when you have a big enough why, you can endure any how.’

And how right he is.

With a marathon, pain is pretty much inevitable (especially if you start it with a hip full of metal and an ITB injury). But, the suffering doesn’t have to be.

My big why? The best way to describe it is to use the word I gave to the London Marathon when they asked me about my #ReasonToRun as part of their 2017 campaign.

I chose hope.

When you have a serious illness, hope is everything.

It keeps you going when you have little else. It lifts you up. It presents you with a future you would otherwise struggle to write for yourself.

It is hope that we choose to gift to all who are ready to receive it on our wedding day.

Yes, we are raising money for Willow and Breast Cancer Care so that they can give people with serious illness the strength to face another day. But, more than that, we run for all those who are finding it hard to get through the day. We run for all those facing physical challenges that mean even climbing the stairs is a uphill battle (that was me a decade ago). We run to inspire others to believe they can in a world that so often tells the, they can’t. We run to show that you can go further than you ever thought possible with the right people by their side.

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So, on April 23, help us raise a glass to hope.

In so doing, you will give me the strength I (and the rest of our running wedding party) need to face the pain and still come out smiling.

See you on the finish line!

Thank you to everyone who has sponsored us so far. If you’d like to help us get our £15k finish line, you can donate here.

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

On June 17, 2015June 17, 2015 By Jackie ScullyIn Charity, Exercise and breast cancer, Happiness, Moving forward, Reflections on cancerLeave a comment

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.

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.

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.)

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.

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 156: You can face any bend in the road, if you have the right people holding your hand

On September 17, 2014 By Jackie ScullyIn Happiness, Kindness, Pink hearts, Reflections on cancerLeave a comment

For the last nine months, our living room has resembled a rather niche card shop. Of course, it started with good wishes for our engagement – and what wonderful wishes they were. Then, mid-January, there was a sudden shift to post of the ‘get well’ kind. Throw in the odd teddy bear, a few Happy Easter cards in April and a steady trickle of notes and messages throughout active treatment and you’ll get the idea.

Starting each day surrounded by a wall of words has been a real boost for me. Never far from a message of encouragement, these notelets and cards have been a constant shoulder of support, a reminder of all that is good in the world and a sign that, wherever you are, you are never far from people who love you. These words have moved me deeply, made me smile, made me laugh out loud, made me cry, made me pick up the phone and get on a train (to make contact) and given me the chance to reflect on the happy memories I have already banked over the last three decades. That’s why I haven’t moved a single one (even to dust)! And, that’s why, it’s a massive step for me to even contemplate taking them down (might actually have to get out the polish).

Apart from the genuine kindness shown by these handwritten gestures (I am a big fan of all things handwritten), the main thing that has struck me about this word-filled wall is that I have often under-estimated just how powerful a small gesture can be. For starters, I now fully appreciate the excitement of hearing the post land on the doormat. I now see how a well-written card has the power to change the course of a day. I also now realise that the cheery post-its I used to leave on colleagues’ desks, the handmade gifts I have posted, the acts of kindness I have delivered and the messages I have written over the years have really meant something to the recipients. People have written to me about events and gestures that at the time didn’t seem significant. I now know just how much those gestures meant and, having been at the receiving end of an awful lot of kindness myself, it’s not something I will ever forget.

What is so exciting about the fact I have kept the shelves stocked with well-wishers is that I now – as part of moving forward – get to take them down and re-read the lot. I imagine there will be more than a few tears as I relive all the hugs, positive vibes and amusing memories.

Of course, I won’t be recycling them. I will pack them away, so that I can one day be reminded of just how lucky I am to be alive and to have an amazing group of people with which to share my life. Until then, I know the memory of them will live on long after they have relinquished their spots on our dusty shelves. And, excitingly, I have just received a few amazing congratulations cards (like this one), which means the shelves won’t be completely bare!

When you have one giant paper-based hug on tap, thoughts of giving back and ‘paying it forward’ are never far away. That’s why I started my pink hearts campaign and why I now have lots of reasons to seek out and spend time with the people that have shaped my life and made me who I am. So far, I have delivered more than 20 fluffy hearts and messages to special people across the country (in no order of priority) and I am excited about the packages I have left to deliver. It will a take years, but years packed with special moments sounds pretty good to me.

I have set up a pink hearts page here on my blog, because I hope that this little initiative inspires others to reach out to the people they love. The idea is simple. First, make a pink heart (I have adapted a Kirsty Allsopp design for the purpose). Next, tuck it inside an envelope with a message explaining what to do with said heart along with a personal and heartfelt note describing just what that person has done for you. Then, hand-deliver that heart to that person. The catch? Each recipient shares their address (except for hospital staff because I don’t want to appear stalkerish) so that I can a) update my address book and b) send them a little surprise gift sometime in the future to remind them of the importance of seizing the moment and looking for the beauty in each and every day. I know that the heart will fade, but I hope the message lives on forever.

It is a sad fact of life that it takes a serious illness for us to say what we mean to each other. And, this is something I want to change. I have been writing this blog because I want to use my experience to help others. If, through one illness, we all learn to say what we feel and tell those around us how important they really are, I feel I will have made a positive difference this year. If I’ve been put on this earth to spread the love, then spread the love I will.

Whether you sew a pink fluffy heart, or pick up the phone, now is the time to get in touch. Tell loved ones what it is about them that makes you smile. Tell friends how they have made a difference to your life. Tell them, because otherwise they may never know how much they mean to you.

I don’t want you to wake up one day and feel like you’ve missed the chance to make a difference. I want you to look for the good in others and celebrate it when you find it.

We, none of us, know what is around the corner. But, if cancer has taught me anything, it is that you can face any bend in the road if you have the right people holding your hand.

Thank you for everything. You know who you are!

NB: Given the volume of notes I have received, I do have a fairly good grip on the get well card market in general, so do get in touch if you’d like some recommendations.

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

On September 14, 2014September 20, 2014 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:

Breast cancer lesson 153: The race to the finish is on!

On September 13, 2014 By Jackie ScullyIn Happiness, Reflections on cancer3 Comments

It really is hard to explain quite how excited I am right now. You might think this strange given it is the evening before my next 10k (that means an early night and no Saturday wine), my skin is starting to look very angry and I have just discovered that the loss of sensation and general tingling feeling in my hands and feet (otherwise known as peripheral neuropathy) might be here to stay for a good six months if yesterday’s review meeting is anything to go by. But, just knowing that I have two massive finish lines to cross over the next two days makes me very happy indeed.

I confess, I had a slight blip yesterday at my review meeting. After joking with the team doing the treatment for the day, I was ushered into a room to talk through aftercare following my last blast. It started well due to the fact I was dressed in a complicated top that took me ages to get off while I was trying to hold a sensible conversation. (I just had to laugh in the end as the surreptitious tugging on the sleeves to try and get them over my hands just didn’t work.) Once out of my top, we talked creams (you need to keep the Doublebase going for as long as you have symptoms and for at least two weeks), swimming (seems I might be able to take my first swim in a month if the skin holds), peripheral neuropathy (it seems I still have no one to talk to about this currently and it might be here to stay), Tamoxifen (as I haven’t been consented for this yet, no one in the department can prescribe the drug for me, so I have a few weeks reprieve before the 10-year course begins) and the 10k (she has given me some medical cling film to attach to my boob and under my arm to prevent the friction from causing my skin to fall off).

Then, she mentioned the future. For the first time, a medical professional was sat in front of me telling me this was the end. There would be no more frequent appointments to make me feel like I am fighting any rogue cancer gremlins in my body. There will be no one close by if I have a ‘what if’ wobble. From Monday, I will be just another hospital number on the system, already replaced with another patient starting their journey. I should have been jumping for joy. Instead, when someone is looking across at you with tears in their eyes telling you it’s ok to cry, I felt a little sad. It wasn’t a lasting sadness (I welled up a bit but recovered well), just a realisation that the protective bubble of surgeons, nurses and doctors is about to burst. And, it won’t be long before I will be left alone to face the future, with just a packet of pills for company.

The thing is, I know I’m ready for the future. I am excited about the future. I am strong enough to face the future. And, I know I will never be alone, thanks to the sheer volume of amazing people around me. I am also delighted to be giving waiting rooms a wide berth for a few weeks at least. I guess I just wish this appointment had been less about uncertainty and sadness and more about congratulating me on a job well done. I would have preferred an ‘I did it’ sticker, a pat on the back and a big smile rather than a reminder that the end is not really the end and that the road ahead could actually turn out to be a little bumpy.

The way I am choosing to say goodbye to active treatment and hello to a cancer-free life, however, doesn’t require a consulting room. Firstly, given there won’t be fireworks or even a lolly or star sticker from the hospital (and it is a Monday as well, which makes it feel even less special), I have taken it upon myself to mark the occasion with an end-of-active-treatment present to self. I have heard of people buying shoes, bags and cars to celebrate the fact they are being allowed to get off the cancer conveyor belt, but I have opted for something practical and meaningful to me: a decent pair of trainers.

I am not sure my old pair should have really been taken round the block, let alone the streets of London in July. So, I promised myself, if I made it across that finish line, I would get a pair that wouldn’t break my feet. I bought them a month or so ago to break them in before the big race tomorrow and I do feel I have been bouncing rather than jogging around the park of late. When I put them on, I feel like I am giving my feet a big hug – and that’s got to be a good thing.

The buying of running shoes is also quite significant for me. Running deserves its very own chapter in my cancer story. Anyone who has ever taken to the road (park, trail, path etc) will know that indescribable rush that comes with completing a run/jog/walk. It is that feeling that has helped me greet each day with a smile. And, it is that feeling I want to carry with me forever. I believe a run can change a day for the better. And, my future is all about having a better life. I never thought my hips and the toxic drugs in my body would ever let me be a runner. I am so grateful to my body for giving me that chance.

These shoes are also a reminder that whatever finish line it is you need to cross, you will get there. But, you should focus on making the journey as comfortable as possible, so you enjoy every step of the way.

Tomorrow, the aim is to 1) finish in one piece with cling film in tact and skin and nails still on 2) Raise money for the amazing charity Coppafeel 3) celebrate the end of cancer and the beginning of a healthier life with friends 4) shave even one second off the chemo run time and 5) cross the finish line with a big smile on my face. If you’d still like to pledge to buy me a drink to celebrate the end of active treatment (for each pledge I get I will donate to charity) or sponsor me, please post here!

When I cross that finish line tomorrow I cross it for everyone who has joined me on this journey. This serious illness may have tested me to the limit, but I think I will always look back on this time as one incredible ride.

All I need now is an early night and then a bit of banana fuel in the morning!

Wherever you are in the world, I hope you’ll be cheering us (by which I mean, Duncan, Fran and Sam) on!

As an aside, I will leave you with a rather amusing exchange with the shop assistant at the local supermarket a moment ago (on my mission for bananas). It went a bit like this:

Assistant: ‘How are you doing?’

Me: ‘Really well thanks’

Assistant: ‘And, how is your day going?

Me: ‘I am having a good day. Thanks for asking’

Assistant: ‘Really?’

Me: ‘Really!’

Assistant: ‘But, you do have a disease right?’ [points to lack of hair]

Me: ‘Ah yes, that would be cancer treatment. Nearly over now.’

Assistant: ‘I knew it! You’re a star.’

Seems I can’t even buy my magic running-fuel bananas in peace!

Breast cancer lesson 150: Ten things that will never taste the same again because of cancer

On September 9, 2014 By Jackie ScullyIn Baking, Chemotherapy, Happiness, Reflections on cancer2 Comments

Today I did a little dance after standing on the bathroom scales (a rare event I grant you). That’s because today, one month after the official end of chemo, I have returned to my pre-surgery weight. Thanks to jugs of water (with a squeeze of lemon), bran-based breakfasts, run/jog/walks around Greenwich Park and, yes, the odd comfort cake, I have space in my jeans once more and a great big smile on my face.

When I think back over my food choices over the last nine months, I can’t help but laugh. With my love of water, tea, fish, meat, cheese, bread, biscuits and cake, I have always been fairly predictable. Daring for me is throwing balsamic on the courgettes! Add in a fair few helpings of jelly babies, pints of lemonade and ginger biscuits thanks to chemo, however, and you could argue my diet had started to resemble that of faddy child. Not perfect timing when you consider our garden has been more productive than ever this year (although I am making up for it now by working my way through our tomatoes).

With the chemo cravings a distant memory, I would like to be able to say order has been restored once more. But, that’s not quite true. For starters, my tastebuds are in overdrive. Everything feels like an explosion of flavour in my mouth.

Amazingly, I have even started savouring my food rather than racing the clear the plate. Whether this slow down will continue remains to be seen, but I will enjoy it (and its impact on my digestive system) as long as it lasts. It is a wonderful feeling to enjoy every mouthful and I’m convinced everything tastes better (although that might have something to do with the fact it couldn’t possibly taste worse).

Of course, when people talk about food and cancer, thoughts immediately turn to chemo – aka, the tastebud stealer. And yes, while it does make a pretty big impression on the dinner plate, it is not the only treatment and life-changing event to alter my view of certain foodstuffs.

So, here are ten things I know will never taste the same again (heightened tastebuds or not).

And, the good news is, it’s not all bad…

1) Chocolate: I have always had a weakness for chocolate and, dare I say it, the cheaper stuff usually (Dairy Milk and Twirl, with a bit of Green and Black’s vanilla chocolate thrown in). Now, every time I even look at a bit of chocolate, I am reminded of the chocolate hampers and treats that arrived in the mail to help me pile on a few pounds before surgery. That chocolate made my new boob possible and I will be forever grateful for it. I had never eaten a Hotel Chocolat chocolate before in my life. Now, I could probably describe the entire range! It was a bit dangerous creating a chocolate cupboard in the house, so while Duncan and I started to think of it as an essential nightly ritual, the new waistline wasn’t quite so sure. There is a little chocolate in the house now, but don’t tell Duncan, because he doesn’t know where it is :-).

2) Mashed potato: Oh, NHS, why is it that your mashed potato tastes so good? I never wish to eat your toast for breakfast again, but your smooth creamy mash is amazing. I appreciate the morphine may have had something to do with it!

3) Bananas: Ok, so they don’t have quite the same impact as they would on that comic book character Bananaman, but now I’ve taken up running (as an act of defiance against this dreaded disease), when I’ve eaten a banana, I feel like my legs could power on forever. Of course, I haven’t actually gone further than a 10k to test this theory, but I will always have a soft spot for this fruity fuel and its ability to get my round Greenwich Park.

4) Anything with ginger in: I never used to understand why people got so excited about ginger. When you go in search of the ultimate ginger chemo cookie, however, this little ingredient does take on a whole new meaning! I think Delia’s ginger nut recipe is still a personal favourite, but I have enjoyed my journey through everything from gingerbread to ginger syrup cake. That doesn’t mean I’ll be stealing your ginger chocolate any time soon mum, so don’t worry.

5) Grapes: I love grapes, but I certainly won’t be freezing them again any time soon! The freezing idea was a way of eating fruit, while simultaneously trying to cool the mouth in the chemo chair to reduce that cycle’s side effects. I think it is fair to say it was as worthwhile as wearing sunglasses in a darkened room.

6) Ribena: Before cancer, I used to associate Ribena with my great aunt, who likes to drink it warm because she (shock horror) doesn’t do tea. Having been my ‘water’ for the entire chemo period, however, it is now sitting proudly in the fridge waiting to be diluted once more. It is incredibly sweet and it does remind me of the drug epirubicin, which isn’t ideal. But, if I drink it with my eyes shut, everything is ok.

7) Wine: I will never forget my first flavoursome sip of wine when my tastebuds reappeared for the last time on chemo cycle six. I was in a restaurant in Padstow and the lady serving us poured a small glass for me to try (no point buying it if I can’t taste it). It was magical. Acidic wine (the more acidic the better), was a friend on chemo. It isn’t a friend any more. I am also glad to say that red wine has been reintroduced once more. It had a bit part in my chemo story. I couldn’t taste it at all, but a glass before each blood test did help those levels (this is not a recommendation)!

8) Ice lollies: For me, ice lollies have always been a real sign of summer (my favourite being the Strawberry Mivvi, which I have avoided of late). Sadly, I think those days are gone. I did have a fruit pastille lolly in Cornwall, but it was for medicinal purposes. When you’ve craved them constantly for months as a way of shocking the tastebuds into action, they don’t quite have the same appeal. Oh well, best stick to farm ice cream and waffle cornets in future. It’s a hard life.

9) Bread: I never want to remember the peanut butter on toast chemo moment that felt like my mouth was being welded together with superglue and cardboard. Now the subtle flavours of bread are once again present in my life, however, I don’t think I will ever take them for granted again. Beautiful crusts, fluffy light rolls and floury baps, I love you all! I am thoroughly enjoying my ‘year without buying sliced bread’ challenge!

10) Eggs: If all I had to eat for the rest of my life were eggs (with cheese of course), I would be a happy lady. That’s why I was excited when a friend recommended Nigella’s Eggs in purgatory meal. Trouble is, I love it so much, I think I ate it about 40 times during the chemo months. We are, as you can imagine, on a bit of a break right now.

In truth, nothing will ever taste the same again.

And, you know what? I wouldn’t have it any other way.

Breast cancer lesson 148: Life is too short to save things for best

On September 3, 2014 By Jackie ScullyIn Happiness, Radiotherapy1 Comment

This morning, a rather surprising reminder popped up on my Blackberry alongside the ‘Take Clonidine’ and ‘rub in Doublebase’ requests. All it said was: ‘life is too short to save anything for best’. Quite why I thought to write it down and deliver it myself on this particular day, I will never know. But, I’m really glad I did.

Engaging with my possessions is something I’ve been doing a lot more of this year. I, like a lot of people in the world, have a tendency to put certain things in a ‘best’ category. And, when they achieve this coveted position, they are pretty much never seen again.

Why is it I have immaculate-looking pans, but always default back to my university pan with dodgy handle and food-encrusted bottom? (Quite what masterpiece I think I’ll be rustling up, I’ll never know.) Why is it that tops I buy after dreaming about them for weeks are carefully preserved in my wardrobe? (I’m not sure my wardrobe appreciates them quite as much as I do.) Why is it that special stationery is always too special for my ideas? Why is it that hand cream seems like an essential purchase at the time even when I feel like I need a special occasion to use it? And, why is it that when a meal is deemed good enough to repeat, it gets popped in the recipe tin and somehow forgotten about? (I always seem to focus on new meals rather than old favourites.)

Why indeed! This year I have come to realise that there’s no point saving things for a special occasion, because that special occasion may never come. And, the trouble with the word ‘best’ is, you can rarely spot a ‘best’ moment because it is almost impossible to define. Saying ‘best’ takes away the hope of there being something better in the future.

I have come to the conclusion, as explained by the recent reintroduction of my school-time favourite fountain pen to my life, if you want a good day to be great, why not start by filling it with your favourite things? When I discovered the pen the other day while rummaging through my bedside table, I remember thinking to myself how much I used to enjoy writing with it. And, then I thought, if I love it so much, why am I not writing with it every single day. Before I knew it, I was popping in a fresh cartridge (from about the year 2000) and giving my writing finger back its old inky smudge. Before I knew it, I was smiling while writing the word ‘bleach’ on the supermarket shopping list.

A special occasion isn’t something you wait for, it’s something you have to create – not just once in a while, but everyday. (Just to clarify, writing the word bleach is not a stand out moment in my life – things aren’t that bad!)

I remember a friend once telling me that she always wears good (and matching) knickers and bras just in case something happens to her and she ends up in hospital unexpectedly. Now, this might seem slightly macabre, but I like her thinking. Of course, at the moment, hospital trips are not unexpected for me and, I think that If I do end up in one unexpectedly, I won’t particularly care about the colour of my knickers and whether they match my bra (when you are used to a nurse pulling up your magic pants, it would seem strange to suddenly adopt such a view). And, I really would have to invest to be so co-ordinated. What I like is the idea that matching underwear actually means something to her. And, by wearing it every day, she is celebrating that fact every day.

So whatever it is (pants, socks, pens, notebooks or even glasses), I challenge you to stop thinking that the best is yet to come, and start bringing a bit of your best into daily life. If you’re waiting for that moment, chances are you’ll never get it. And, if you aren’t, who knows what doors will open for you when you’ve injected a little more happiness into your day? Please do post and share your favourite things. I won’t be posting a pic of my favourite knickers, but I can tell you I have a ‘best’ mug, cup, pen, pan and notebook (for starters). I even have ‘best’ marigolds!

I’m off to drink tea out of a special mug, eat my special chutney before it goes off and write on the first page of a special notebook (that’s about six years old). All while wearing a special top. Daring I know!

As a quick aside, radiotherapy is still ongoing. Amusingly, while writing this post in the waiting room, I heard my name being mentioned by the radio team. All I could hear was fragments, but I got ‘she’s the young one’ and ‘why don’t you just ask her?’. At that point, I started imagining what they might be thinking. Would I have to demonstrate something? Would I have to take my top off for somebody else? Would I be bumped down the list?

About five minutes later, I was greeted by a friendly lady who asked whether I would mind changing one of my appointment times to 8.30am. She thought she was asking a lot, so she was delighted when I reacted like I’d just won the lottery. Being called ‘the’ young one, however, reminded me just how few of us ‘young ones’ there are (thank goodness). I am happy to be the odd one out, but I’d rather be known as the smiley one who always seems happy when she’s writing with her very nice fountain pen :-).

Breast cancer lesson 147: Why I won’t complain about knotted hair again

On September 1, 2014 By Jackie ScullyIn Chemotherapy, Happiness4 Comments

One thing I really miss about having no hair is the hairdresser’s chair. I don’t miss the expense, or the fact I don’t have much glamorous chat (although I can hold my own when it comes to the latest on X Factor). I just miss the me time, the head massage while I’m having my hair washed, the ‘just-stepped-out-of-the-salon-you’ll look-like-this-for-five-minutes’ effect and the fact that, for at least 40 minutes, my image is in someone else’s hands. (I also miss the tea, the biscuit and the chance to read issues of Heat and Hello).

In truth, I have actually been to the hairdresser once since my number two back in April (although even that did not count as a proper appointment). Duncan treated me to a trip to the barbers (for him to get his haircut I hasten to add) on the way to a wedding last month. I remember chuckling to myself as I watched Duncan get his 10 minute clip, thinking that even in a barbers, I had less hair than everyone else. Thank goodness I had my hat on, so that they couldn’t see my ‘baby-like baldie’ look. Needless to say, I won’t be accompanying him again any time soon. It wasn’t much of a date :-).

I have discovered, however, that you don’t need a hairdresser to give your head a bit of pampering. You just need a ‘New’ bar from Lush. This red soap-like bar (that actually smells a bit like Christmas due to the cinnamon content) is apparently the answer to quicker hair growth. Whether or not it actually lengthens my locks remains to be seen, but it feels lovely to get lathered up and, with 80 washes per bar, it’s a pretty cost-effective pampering activity. I have heard that there are other shampoos that can prove useful in the hair growth department, so if you have had any success with a product, do let me know. I haven’t, however, heard of one that ensures your hair doesn’t grow back grey. It is hard to tell right now, but there is a lightness to it. Am hoping for blonde – or a good cut and colour before too long.

Of course, the shampooing has made the fluff I call hair stand to attention a little bit more, so I am sporting a bit of a chicken look today. I have been told that it is best to go au naturel and leave the hats at home to help encourage growth, so London had a good look at the fluff today.

With its ‘first-shampooing since April’ moment, Sunday was another of those mini milestone days I have been keen to celebrate. I am sure it won’t be too long before I enjoy my first hairbrushing day and even my first haircut. Life seems to be flying by at the moment and the idea that active treatment will be over in two weeks amazes me.

On the subject of haircuts, now I have fluff, my thoughts have been turning to post-chemo cuts. I feel lucky that I actually like short hair and get to experiment with all the styles I have also avoided (through fear of hating them and not being able to stick the hair back on). When you’ve hot no hair, having something to call your own is pretty exciting – although I know I have many more months of the GI Jackie look before anything resembling a style makes its way onto my head.

The style I do fancy is something resembling the look Brody’s wife opts for midway through season one of Homeland (yes, I appreciate I am miles behind). It’s a pixie with a longer bit on top (click here for a quick peak). For now, it’s just a dream staring out at me from the TV screen. I can’t wait for the day when I can call it – or something quite like it – my own! If you’ve seen something you think might suit me (here’s a quick reminder of the old Jackie look – or check out my a twitter handle, which is slightly more forgiving), please send me a link. When it comes to making a final decision, time is something I have on my side for once.

Of course, what I am not missing is having another appointment in the diary – I have enough of those to keep me busy at the moment. It was back to the hospital today – via a wonderful lunch with an old friend I haven’t seen for about 14/15 years – for the next radiotherapy blast. Highlight of today’s speedy appointment was the moment when the technician said: ‘now, if you’d just like to lie like a big rock or something like that, this would be a lot easier.’ I know I had doughnuts for dessert, but a big rock?! Really?!

As an aside, if there is someone you haven’t contacted for a really long time, why not make September the month you get back in touch. As someone who is now saying thank you to all those who have touched my life over the last three decades, I highly recommend it. Now is the time to say what you mean and tell the people that matter just how valuable they are.

Back at home after blasting number five, there is only one thing I want to do – and that’s get the shampoo out again. Let’s hope all this washing doesn’t wash it off.

There’s one thing for certain, I won’t ever complain about knotted hair again.

Breast cancer lesson 141: Why cancer has inspired me to spend a year baking – rather than buying – bread

On August 22, 2014 By Jackie ScullyIn Baking, Chemotherapy, Happiness2 Comments

It will come as no surprise to those of you who know we well, that my latest blog for Breast Cancer Care (click here to read) is all about food (it was only a matter of time before I moved on to the subject!).

What is more surprising, however, is the fact that when confronted with the long list of side effects associated with chemotherapy treatment, the prospect of losing my tastebuds (and what impact that might have on my life) never really crossed my mind. Focused as I was on neutropenic sepsis, peripheral neuropathy and the more visible side effects of these toxic drugs, I didn’t even spare a thought for the day that a slice of bread might resemble a brillo pad (admittedly I have not dined on a brillo pad, but you get the picture).

Funnily enough, it’s not the day I first turned my nose up at toast (I never did think there would ever be such a day in my life) that sticks with me. It’s the evening I was sat in a little restaurant with a friend and discovered I could once again enjoy the subtle flavours that a good chunk of bread has to offer. Needless to say, there wasn’t even a crumb left in the bread basket and, had I not gobbled up my friend’s share too (with her approval I hasten to add), I would have probably ordered seconds before the starter!

I can trace my fascination with bread all the way back to a little Italian cookery school in central London where I discovered how to make focaccia years ago. Having been slightly under-confident in previous evening classes, the action of kneading bread was such a revelation. I even remember the chef saying I had hands (and the right amount of aggression) for breadmaking. Not sure that was a compliment, but, while I have never made focaccia again, the experience did inspire me to buy a cheap dough scraper and get mixing. I still have my trusty blue dough scraper and I still have a real passion for all things beige and yeasty!

Over the years, I have tried everything from bread bowls (Duncan was eating casserole out of them for weeks on end) and stilton and bacon rolls (tasty with ham on Christmas morning) to bread shots (good party fodder) and olive buns. But, up until about three weeks ago, I had never made a proper loaf. Now, I’ve already made four (along with some crumpets)! I have also just discovered that you should never wash a loaf tin or make a ferment when you have scrubbed down the surfaces (cooking without cleaning up is my idea of heaven)!

With my tastebuds firmly back in my body (and heightened I feel – although this is probably to do with the fact I have been settling for bland for four months now), my love of bread has never been so strong. So much so, that I find even the thought of a seed-filled sliced loaf from the supermarket deeply underwhelming.

That’s why I have decided to spend the next year avoiding the supermarket’s slices and baking my own. Why do I need to buy bread packed with preservatives, when it doesn’t last long enough to go off? Cancer has taught me that I no longer wish to fill my body with pre-packaged foods that favour convenience over taste. My body may not be everyone’s idea of a temple, but it’s my temple. And, temples all deserve nice bread.

With just my peripheral neuropathy-affected hands and my dough scraper for company, I am under no illusions that this will probably be a bit challenging at times (even though I have discovered you can leave a dough to prove on the counter or in the fridge all day before knocking back). But, there really is nothing better than watching a heap of flour, oil and water turn into a freshly baked loaf that is just crying out for a scraping of butter. And, it is that thought that will keep me going if I find myself veering towards the bakery aisle once more.

If you’re tempted, why not join me? Perhaps we could start a virtual bread baking appreciation society! I would also love to hear about any bread triumphs you’ve had – or top tips!

Happy kneading!

Breast cancer lesson 139: Success belongs to those who enjoy the process

On August 18, 2014August 18, 2014 By Jackie ScullyIn Baking, Brighter Life List, HappinessLeave a comment

It takes more than a bit of peripheral neuropathy and sleep deprivation to prevent me from making a dent in my ever-growing Brighter Life list (click here to read more).

Over the last month alone, I have applied to the Wimbledon ballot for the first time (it is pretty much all paper-based, involving SAEs and form filling, which makes me smile), made crumpets (and ate quite a few given you have to really make a batch at any one time to make it worthwhile), walked around the Olympic Park with my mum and dad (it is bigger than I’d imagined) and stood on a cliff with no hair. In short, I have made good progress.

Buoyed by the increasing number of photos filling up my list page (I post one as evidence I have completed it – and as a nice reminder), I decided to spend the weekend tackling a biggie. And, by biggie, I mean baking for Test Match Special at The Oval.

Now, for those of you with no interest in – or knowledge of – the game of cricket, the above paragraph will mean very little. Basically Test Match Special is a radio show and, dare I say, a great British institution. It is famed not just for its commentary and analysis, but for the fact it attracts bakers from all across the country, keen to flex their muscles and sift a bit of flour. And, for the last few years, reminded of the fun I used to have as a child helping my mum prepare cricket teas for the local club, I was determined to be one of them.

Unable to find any baking rules online, I decided the best strategy would be to bake first (to show commitment) and then email/tweet across my bake to get some delivery instructions. I planned a cricket ball-themed cake (with 261 sugar balls), spent seven hours in the kitchen baking and borrowed even Duncan’s cricket ball to do a bit of sugar stitching. I spelled out TMS in cricket balls. As challenges go, it was a labour of love.

So what happened to this red and green sugar-fuelled vanilla-soaked sponge? Well, the tweet worked and lovely Aggers (one of the main commentators) replied to say: ‘@Jackie8 Wow! Fantastic. See stewards entrance of OCS stand at Vauxhall stand – and demand to deliver personally.’ I had celebrity endorsement and a route to the media centre. Duncan was then packaged off with the heavy cake in a giant plastic container and a little notelet to make the drop.

Sadly, the one thing I didn’t fully appreciate (wrapped up as I was in kgs of buttercream) was the fact that while the BBC were game, the security guards at the ground weren’t. Duncan tried three different stewards and they were either too stretched or too suspicious (apparently we could have baked anything into that cake) to let him (or the cake through). By the time I tweeted Aggers again to try and get some backing, India were all out before tea and it was all over. I should really admire the security teams for their diligence. But all I kept thinking was, how did the little five-year-old boy get through the day before? Obviously, Duncan doesn’t look like a hardcore baker!

The fact Duncan returned home with the heavy cake (I do feel so sorry for him that he carried it around all day) would normally have made me very sad indeed. And, yes, I had a little cry for all the effort. But, once I reflected on the whole experience, I quickly came back to my positive self. Firstly, I enjoyed the process. I now know how to make 261 sugar cricket balls (a skill not to be sniffed at) and I simply love being in the kitchen. And, secondly, while it may not have made it to its planned destination, you can’t take away the fact Aggers liked it (even if the security guards thought it was a sugary-disguised attempt to bring down TMS) and it certainly scooped up a few smiles along the way. I see it as a tick on the list, even though I may feel compelled to revisit the goal next year.

The reason I am blogging about this is not because I am obsessed with cake or TMS (or feeling slightly guilty because I ate a slice that must have been about 600 calories in one hit). I am writing this because it reminded me that the key to happiness is not necessarily the outcome (although it is good to have goals), but rather enjoying the journey towards that outcome. If we live in the present and take what we can from each moment, then we can be happy regardless of what happens next. And, if we can find happiness in ourselves (without looking for it in others), we will enjoy a more contented life.

This, in many ways, is how I have approached active treatment. I don’t feel brave or strong. I just face each day and look for the opportunity to smile through it. A few days ago somebody asked me if I’d always been funny. I laughed and explained I didn’t think I was particularly funny, but that any attempt at humour was just my way of tackling the challenges I face. I would rather find humour in a hospital gown that doesn’t do up right or an appointment where I have to take my top off (again!) than reflect on the fact that the reason I am experiencing these things is because cancer tried to cut my life short. If I can ‘enjoy the process’ every day and ‘be present’, I never have to worry about how many days I have left (hopefully lots and lots).

I am glad to report that Duncan, the neighbours (well, I have heard them moving around) and I are all still standing so it obviously wasn’t poisoned (Duncan’s team should be polishing off the rest today). The notelet is in the recycling, but here is a copy of the letter I hoped TMS would receive (there was even a charity mention too).

Hi Aggers and the TMS team,

I hope you are having a lovely day.

At the beginning of the year when I was diagnosed with breast cancer at the age of 32, I set up a ‘Brighter Life List’ on my blog (amusingly entitled ‘Small boobs, big smiles’) to help me smile through active treatment and encourage me to tick off the things I have always wanted to do, but have never found the time. Number 43 on this list (no order of priority) is to bake a cake for TMS and that’s why I am writing to you today.

Coming from a cricketing family, cricket has always played a part in my life. From serving up tea and cake to the players at our local club and cycling round the boundary as a child to following my brother across the country (a left hand opener) as he played for Wiltshire, a summer weekend without a few overs in it wasn’t really a weekend at all. Even Christmas in our household just wasn’t Christmas without my brother and dad pouring over a copy of Wisden. Interestingly, my dad (a wonderful, yet humble man) once bowled out Viv Richards when he was playing for Lansdown so he could qualify for Somerset!

My mum’s cricket teas were legendary and that is how I learned how to bake. So, wanting to bake for TMS is a natural next step for me.

To celebrate the end of chemotherapy, I have baked you a cake covered in cricket balls.

When I discovered my lump, I nearly didn’t go to the doctors because of my age. Now, I am determined to help charities, such as CoppaFeel, spread the message about early detection, so that more men and women can be treated successfully for breast cancer. I would be so grateful if you could mention the charity and ask that everyone check their boobs (men and women). Who knows? You might just save a life.

Thank you for satisfying my need for a bit of cricketing humour and keeping me smiling while I fight this challenging illness.

Let’s hope this is one delivery that’s not unplayable!

Thanks for your time and I look forward to hearing from you.

Kind regards,

Jackie Scully

I will try again. If, by any chance, you know anyone at the BBC or know how I might guarantee the drop next time, please do send me a message!

As for me, I am more determined than ever to continue with my list and live my dreams. And, I hope that, in so doing, I may encourage you to live some too!

Next up? Making a ferment.

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