Breast cancer lesson number 164: Here’s to a little thing called progress

On October 24, 2014 By Jackie ScullyIn Moving forward, Reflections on cancer7 Comments

Now, if my email inbox is anything to go by – particularly following my brief appearance on the BBC 10 O’clock news on Monday night – I’m overdue an update. The one thing I didn’t think about when the TV crew came round insisting that I drink copious amounts of tea (oh, yes, they got the measure of me pretty quickly), was that the last time I posted a picture of myself publicly, I had very little hair. Now, however, while still short and not yet what you’d call a style, there is something resembling hair on my head. And, on Monday night, it feels like the whole world got a quick look.

To track my journey from bald chemo shine to, hopefully, a nice pixie crop and beyond (although I think I may be short forever now), I have been taking photos on the 18th of every month to celebrate being a month further away from my last poisoning on 18 July.

Here’s me in August (still bald with only the smallest amount of fluff and no eyebrows or lashes):

Here’s me in September (with something darker than chicken fluff and a few stray eyebrows and lashes)

And here’s me just a week ago (with what I can only describe as a silky carpet of hair in a colour yet to be fully determined – plus eyelashes and a disorganised eyebrow).

I am delighted to report that Susie the wig is tucked away, the hairloss hats are waiting to be packed up into my cancer capsule (see lesson 158 to find out more) and I even got to towel-dry my hair the other day. If that isn’t progress, then I don’t know what is!

And that’s not all. Also deserving of a mention in these post-active treatment headlines is the exciting news that I today applied my first bit of mascara. Yes, it was hardly noticeable to anyone but me (and only because I applied it), but to me, it was yet another step away from the life that cancer tried to control. And, I am back to my pre-surgery, pre-Christmas 2011 weight. Every teeny weeny bit of progress gives me a reason to smile. And I am keen to do a lot of smiling over the coming weeks and months.

Of course, there’s still a way to go with the hair (any winter hat recommendations would be gratefully received), the hot flushes (the return to work means I am frequently sweating through my clothes on the tube), the sleep patterns (although the cold helps), the tiredness (am not sure it is fatigue but the yawning is constant) and the peripheral neuropathy (these weird hands and feet sensations are a little troublesome). I also still feel like I’m on a timer, trying to squeeze everything into my life before my sand runs through. But, I’m getting there – and that’s all that matters.

And, I’m ready for my next challenge. A trip to the swimming pool tomorrow…

Wish me luck!

Breast cancer lesson 163: The rollercoaster of life continues even when you’re back on solid ground

On October 12, 2014 By Jackie ScullyIn Moving forward, Reflections on cancer3 Comments

Yesterday, I went on a ‘getting closure’ mission. Those of you who have followed my journey from the beginning may remember a certain moment of criminal activity that I will never allow myself to forget. Just after being diagnosed, I walked out of a coffee shop without paying. Yes, it was only a cup of tea (and when my friend called them to apologise they said the loss was only about 15p). But, for me, it was a sign the cancer diagnosis was starting to take hold.

So yesterday, I went back to said coffee shop (hoping not to find my mug shot plastered in the window) to repay my debt and have lunch. The only hitch? The coffee shop looked like it was no longer in business. All I wanted was closure, but life decided I couldn’t have it (if you know what has happened to the Dandelion Cafe in Camden, please shout).

After joking about my behaviour sending the business under, I started to reflect on just how difficult this healing period really is. I feel strong. I feel happy. I feel motivated, and on the surface (if we ignore the odd hair-do), I look better than I have done in years. I am positive about the future and not currently fearful of what that future may contain. But, even with all the smiles and the genuine happiness, I am still acutely aware of the fact my cancer diagnosis is still bubbling beneath the surface. And, even when I take positive steps to try and put this chapter behind me, life find a way of mixing things up and reminding me that I am not in total control of what comes next.

A lot of people tackling ‘the end’ have found the writings of Dr Peter Harvey, a clinical psychologist, incredibly useful and I can see why. What I particularly like is the rollercoaster analogy he uses to describe the whole experience.

Rather than paraphrase, here is a passage from his paper:

Imagine a rollercoaster. Some of you will find this an exciting and thrilling image: others of you will find it terrifying and beyond belief that anyone in their right mind would willingly subject themselves to the torment of being transported at high speed and with great discomfort in this manner. Some people find this a helpful image to represent the process of the diagnosis and treatment of cancer.

On a rollercoaster, you are strapped in and sent of into the terror, knowing that there is nothing you can do about it until you emerge, wobbly and battered at the other end. You manage by getting you head down and dealing with it as best you can at the time. It is only afterwards, when you are back on solid ground again, that you can look back with amazement and view what you have experienced and marvel at your courage.

This seems to be an analogy for what happens after diagnosis of, and during treatment for, cancer. The end of the ride is equivalent to the end of treatment. And this is where we start after the treatment has finished and at the point where you can begin, bit-by-bit, to deal with all that you have been through and all that is to come.

You may have had to endure months of treatment by knife, chemicals or radiation until you are probably sick of the whole business, both literally and metaphorically. Now is the time to heal, both body and mind.
A lot of what he says rings true. For me, the most striking bit of the analogy is the idea that when you are going through treatment everything is almost a blur as you rush from one waiting room to another, obediently taking your top off or holding your arm out for treatment. It is only when you hit solid ground again that you can start to reflect on the ride – thrilling, frightening or otherwise. I can safely say, I think it’s a rollercoaster we’d never like to see – let alone ride – again!

Positive though I am, I feel there are two things right now that have changed for me. The first is my view of time. I have always been a tad bit impatient. Now, however, I feel that every moment I have is a gift and, therefore, have been trying to seize each and every one. Trouble is, now that I am back working full time as well as volunteering, cooking, baking, exercising and trying to relax, there really aren’t enough hours in the day. I listen to conversations wishing I could get up and move on. You could say it’s a great filter. The truth? It’s actually a bit exhausting and it’s just unsustainable. Hopefully I will find a happy medium soon.

The other change is a style one. Over the last six months, I have been reaching for zip-up tops and jeans, not dresses and skirts. I was excited about stepping back into my work wear, but, it seems my body shape isn’t the same anymore. The clothes fit, but they don’t quite look right, I have changed, my body has been reborn, and my clothes are a mark of my ‘past’ life.

This version of normal is so shiny and new, it going to take me a while to adjust. At least it is closer to normal though. And, every day, I am taking one step further away from cancer and one step closer to me. Today, I towel-dried my hair, upgraded to an adult toothbrush once more and used a razor (my legs got a shock). That’s what I call progress!

At least I know one thing that won’t be making am appearance any time soon – a rollercoaster!

Breast cancer lesson 161: Ten things that will make you shout: ‘cancer made her do it’

On October 3, 2014 By Jackie ScullyIn Reflections on cancer1 Comment

I have a confession. About two months ago, I went to a studio in North London, met a photographer, and took my top off for Cosmopolitan magazine. It was for the amazing charity CoppaFeel – a feature designed to encourage people to extend their boob vocabulary to something more than ‘big’ and ‘small’ and say #whatnormalfeelslike. There were 30 other pairs of boobs involved (so I was in good company) and it was anonymous. So why, you might ask, have I chosen today to tell you all about it? Well, one because it’s a great campaign that is close to my heart (if you know what normal is for you, you are more likely to pick up any changes to your breasts). Two, it hit the shelves yesterday. And, three, it is completely out of character and has already been the source of much amusement among those I have told.

Just knowing that pre-cancer Jackie was so not the kind of woman to ever taking part in a topless shoot makes me smile. This is coming from a person who thinks being in her pyjamas at 7pm on a Friday night is daring and wearing a tankini is out there! I have been known for my love of reading, my workaholic tendencies and my extreme love of Christmas time. But, I can safely say, I didn’t think I’d ever make a statement with anything north of my waistline (or south for that matter). Up until January, I was just another tired-looking commuter racing to work. Now, I am still a commuter, but one with a rather amusing secret (which I admit is no longer a secret to all regular readers here).

I did it not because I have been transformed into an exhibitionist, but because I really want to make a difference to the lives of men and women everywhere. The campaign is bold and will probably divide opinion. But, if a spread full of boobs isn’t going to get people peering down through their shirts (their own shirts mind), then nothing will. It is also tied to a wider campaign, which includes Rankin-shot pictures on billboards across the country (although not on main road positions for obvious reasons). If it even saves one life, it will have been a worthwhile venture.

As experiences go, it was pretty liberating. Before this year, I had never had a make-up artist work on my face, let alone add foundation and glitter to my breasts. I liked the idea of the anonymity, so imagine my amusement when I turned up to discover I knew the photographer (professional hazard). Thankfully, a friendly catch-up was the perfect way to distract myself from the reality of the situation (and at least I had a bathrobe on for most of it).

Smiling at the magazine feature yesterday, I started to think about the things I have achieved this year that I would have never even considered just a year ago. I am a changed woman (I am even finding it hard to wear my old work clothes at the moment) and, you know what, I am absolutely delighted.

Here are a few highlights. I, Jackie Scully, have:

1) Got my top off for a national magazine – and the play the boob equivalent of Where’s Wally with colleagues! If you are wondering, yes, you can guess. Just don’t expect me to publically confirm (it is obvious to me, but then I do look at them every day).

2) Openly discussed the words ‘boobs’ and ‘breasts’ in a client meeting: it is amazing what can seem commonplace after spending your life talking boobs at the hospital. Good news is, no one is talking to my chest. Amusingly, one friend did say: ‘wow, but you look like you still have breasts’. That would be the reconstruction then!

3) Travelled across London bald (and wore a wig): first time was a little nerve-wracking, but now I don’t even think about it. Trouble is, when your hair is growing back the ‘is it cancer, is it alopecia’ debate is over. The better I feel, the more pitying stares I get! I should also add the fact I stood on a cliff with no hair. That was cold and liberating, however, and not quite as brave as baring all to commuters.

4) Worn magic pants: I was nicknamed Bridget Jones at university by a few friends, but that had nothing to do with the quality (or size) of my knickers. Now, however, I have worn pants that come up to my waist and hold everything in (including my super-glued stomach). I must say, I won’t be channelling my inner Bridget again any time soon, but I know she would have approved of my post-surgery image.

5) Appeared in an exercise video: ok, so it wasn’t the most active of videos (designed to help people reduce the risk of lymphodema), but there were cameras and I was in exercise gear. It was produced for The Haven and it should be available soon. Watch this space.

6) Run a 10k: Dodgy hips and toxic drugs do not a runner make. But, I am delighted to have crossed the finish line of not just one, but two, 10k races. I am now back in training for the next one (which may just be a bit longer)!

7) Have a photo shoot – and appear in a magazine as me (plus The Guardian homepage): because of my career, publishing will always be part of my life. I just never thought I’d end up in front of the camera. I also never thought I’d ever by anything more than a byline in a feature. I feel very privileged that I have been able to share the positive side of treatment with so many readers.

8) Make a boob cake: as the creator of digger cakes and Thomas the Tank Engine cakes, you might think a boob cake would be a natural next step for me. I am not sure the WI group I made it for will ever get over the bright pink icing and the boobie references though!

9) Play the cancer card: admittedly it has only really worked on a courier and a restaurant (desperate as I was for their bread and butter pudding recipe). When it works, it really does work. But, my word of caution to others contemplating calling it in is, it isn’t always as powerful as you might think. Handle with care I say.

10) Become an official blogger and even received a tweet from a celebrity: while these things are unrelated (the tweet was for baking rather than blogging), I believe I have now truly embraced the digital age. I never thought I would have the confidence to write about my story (but I have, both here and for Breast Cancer Care). In fact, my blog has been read in 108 different countries. And, I never thought I’d have the confidence to bake a cake for a radio programme (but I did).

So what have I learned by undertaking all this abnormal activity? I have learned how to have fun, not take myself too seriously, be playful and be bold. When life is short, there are some things you just have to get on and try. I have also learned that life’s comfort zone is a bit too comfortable and, by being open and giving time for others, you can make the best of almost any experience.

Most importantly, however, I have learned that there are many ways to make a difference in this world. And making a difference is all I really want to do.

Watch this space and may you find your own novel ways to leave your mark!

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 149: Ten things breast cancer has taught me that I never thought I’d ever need to know

On September 8, 2014 By Jackie ScullyIn Radiotherapy, Reflections on cancer2 Comments

As I begin my last full week of active treatment (the end is now just a week away), I have started to reflect on the last nine months and the impact this unbelievable chapter has had on my life.

I think it is fair to say I have discovered an awful lot about myself and life in general as my body has been systematically destroyed and put back together again. I will be sharing these life lessons here over the coming months, but I thought I’d start by looking back on the things I never thought I’d ever need to know!

It’s amazing how we can move through life completely unaware of the intricacies of a certain topic or illness. Then, something changes, and we are required to become an instant expert. Back in lesson number 32 I remember describing the language of breast cancer as something not dissimilar to school. With talk of grades, stages and examinations, all I was missing was a satchel and a uniform (unless a backless gown counts)!

Beyond the booklets and the cancer glossaries, however, there are other learnings for which no amount of reading can prepare you. It’s true that I never thought I’d need to know these things, but, in a funny sort of way, I’m rather glad I do. It makes me cherish the bits of my body I still have that little bit more – and reminds me just how wonderful the human body really is.

Here’s my top ten (trust me, there are many many more). Consider this my alternative breast cancer guide!

1) Tummy fat is pretty intelligent: Top of the list has to be the fact that your tummy fat, wherever it is positioned on your body, never forgets its origins. Hard to believe unless you see it in action! I have been losing weight since the end of chemo so I am evening up a bit now! I must confess, tummy fat is a lot better looking up top.

2) Arranging an appointment to see the Orthotist is like signing up for a spy mission: I will never forget the day I got a voice message from the patient appliances department that was so cryptic (along the lines of ‘Miss Scully, we think you know why we’re calling, so please get in touch to book in a time’, I had no idea what appointment I needed to call to arrange. Starting the call with: ‘I think you want to see me, but am not entirely sure why’ is not something you do every day. I should also add, I had never before heard of an Orthotist. Such mystery all to fit me with a wig!

3) Cancer gives you tattoos: I didn’t think a serious illness would make me a rebel. Now the proud owner of three tattoos for radiotherapy alignment purposes, I am no stranger to a bit of inking. Now all I have to do is wait for my final tattoo when I get my nipple back!

4) Losing your hair downstairs makes peeing in a straight line pretty tricky: if you’ve asked me a year ago whether I would feel comfortable discussing weeing tactics at all, let alone publically, I would have laughed out loud. Now, pretty much anything goes. Try it ladies and you just tell me if don’t agree!

5) Being bald can be brilliant: getting acquainted with my bald head is one of the most liberating things I have ever experienced. While I would never wish to watch the clumps fall into the sink again, I am now pretty comfortable with my head shape and am still loving the ease with which I can get ready for the day. Silky smooth legs are also a bonus! Just wish the nose hair would return quickly.

6) Leeches may be used in breast reconstruction surgery: thankfully, these little beasties didn’t make an appearance in my cancer story, but I was slightly shocked to hear they might. Apparently they can help encourage blood flow if the new boob starts to struggle. This was a bit of oversharing on the part of the nurse prepping me gift surgery!

7) Tea can taste bad: I thought I would never see the day I would decline a cup of tea. Lose your tastebuds, however, and it’s one of the first things to go. I guess I also thought I couldn’t love tea more than I did. Getting my tastebuds back, however, has given me a whole new appreciation for the brown stuff! Rediscovering herbal teas (the smell is still a bit potent) may take a little longer.

8) A saline flush tastes like mouldy oranges – and that orange-flavoured laxative drink they give you doesn’t taste like oranges at all: it would be fair to say, I will never look at an orange the same way again. I still love them, but don’t be surprised if I run out the room if I ever smell a mouldy one again. That PICC line (which I couldn’t imagine having inside me and then couldn’t imagine having out) has a lot to answer for.

9) There are women walking around with magnets in their knickers: yes, if you see a lady attaching herself to a supermarket trolley or opening a drawer with her pants, do not fear. She is probably just fed up of the hell that is the hot flush and desperate for a solution. For the record, it didn’t work for me so no need to keep me away from filing cabinets.

10) Boobs are pretty unexciting: breasts, boobs, jugs, melons, cupcakes and mounds. This year, I have seen (and spoken about) the lot and I have to tell you, they are not all they are cracked up to be. While I will always have a soft spot for my man-made mound, I have started to see boobs less as sexy body bits and more as mundane fleshy lumps. That doesn’t mean I will be stripping off at every available opportunity.

You certainly can’t say the last nine months have been boring. I would say they’ve been anything but.

Question is, knowing what I know now, will life ever be the same again? And, would I want it to be?

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.

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Small boobs, big smiles

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