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

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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 140: Ten things that will make breast reconstruction surgery that little bit easier

I have a confession. In lesson number 72 (click here for a quick refresher), I talked about setting my boobs free and tucking my post-surgery bra away in a drawer rather than wearing it to bed. Truth is, the boobs were free for all of about a night, before I found myself reaching for the unattractive-yet-feels-like-you’ve-got-nothing-on bra once more. I don’t need to wear it. But, I don’t feel quite right sleeping without it.

The reason I am telling you this is that I have just finished typing up my breast reconstruction surgery tips for the cancer kit list (click here to view both chemo and surgery suggestions) and I have come to realise that I am really quite attached to this beige front-fastening number. In hospital, it meant easy access (nurses could check whether my breast was still alive without moving me). At home, it remains one of the most comfortable things I own. And comfort – rather than style – is all that matters now! Life is way too short to wear wired bras that dig into your side or high heels that make your feet swell (and you look like you’re drunk when you haven’t even been drinking). The other reason I am telling you this is that I was asked not to wear it last night and this morning (as part of a secret charity mission) and I actually really missed it. Who would have thought a bra would bring me so much happiness!

As you can imagine, the front-fastening Royce bra (click here to see it in all its glory) sits at the top of my ‘ten-things-that-will-make-breast-reconstruction-surgery-that-little-bit-easier’ list. Excluding painkillers (an essential part of any surgery that involves a tummy tuck), here are a few of my favourite things:

  • A front-fastening bra: One more mention for good measure! It’s so important to get the right bra for you. I took my bra with me into surgery so it could be put on while I was asleep. Due to the swelling, it’s good to go up by one back size so the bra doesn’t feel tight (you might want to bring a few sizes just in case and the return the one you don’t use).
  • Button down nightshirts or nighties: I think surgeons and nurses alike would queue up to see you wrestle with a top that doesn’t button up in the days after surgery. When there are wounds, drains and a new boobie to inspect, it pays to make things simple. Regardless of the time of year, aim for lightweight layers rather than thermals (it can get pretty hot in hospital). I would aim to bring two nightshirts/nighties so you can change (and encouraging a friend or relative to rinse them through would be great)!
  • Big knickers: Bridget Jones would be proud! If you’re planning on laughing, coughing or moving around, big knickers or ‘magic pants’ are a huge help. They can be quite tight to get on and off, but they can make getting in and out of bed a lot easier. They’re handy in the weeks after surgery too. It’s worth bringing more pairs than you think you’ll need for your hospital stay, so you don’t run out (plus a few normal cotton pairs too in case you get too hot). I can’t say I am wearing them now, but I think fondly of our time together.
  • Drain bags: If you’ve been advised that you will have drains after surgery (they look a little bit like sports bottles attached to a tube), it is really handy to bring a bag (for example, a natural shopping bag) that you can slip over your shoulder. This frees up your hands if you need to steady yourself while walking. People do make and gift fabric drain bags too, so it’s worth asking your breast reconstruction nurse if there are any available. Same goes for an easy-to-carry wash bag! If you’re feeling crafty, click here for a drain bag pattern (you will need to scroll down a bit).
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  • Anti-bacterial gel and wet wipes: The bathroom can seem like a long way away if you’ve had DIEP surgery. These will help you cut a few corners in the early days!
  • External power pack: Keeping in contact with friends and family is a great way to make those hospital days go faster. If you’re worried about keeping things charged up (or taking lots of chargers), you could consider buying an external power pack. These can be charged up before you’re admitted and will power your phone many times over without needing to be recharged. They also come with lots of different connectors so you can power many devices. Fewer wires mean a lot less hassle.
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  • Adbo binder/corset: Not one you can bring with you, but worth requesting if you are finding the tummy tuck tight after surgery. I wore mine for six weeks and it was such a support when it came to moving around and laughing. The binder/big pants combo is amazing!
  • Breast pillow: Sleeping on your operated side may not be possible for a while after surgery. That’s when breast pillows can provide real support – not to mention much-needed protection should you share a bed. Some people use breastfeeding cushions, but there are specific breast surgery products, such as TenderCush pillows, that are great for easing discomfort. You might also want to change sides of the bed temporarily to protect your operated side even further. Setting this up before surgery means you can just sink into bed on your return home rather than rearranging your belongings.
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  • Post-surgery caddy: There is nothing worse than getting comfy to find your book is out of reach and your lip balm is in the other room! Setting up a tray or bag of essentials next to your chair is a great way to make sure you have all the essentials close to hand.
  • Cream: Once your wounds have sealed, you will be encouraged to massage them with cream to help things recover even further. I love Moo Goo’s Udder Cream. It smells wonderful and is highly recommended as a repair cream. You are also surrounded by cow puns, which makes this both creamy and amusing!
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You can read the full list in the cancer kit list section. And, if you’re interested in reading more about the breast reconstruction days, why not head to the ‘breast reconstruction’ category (I am excited I have now categorised all my blog posts for easy reference).

If you’re preparing for surgery, then I wish you all the best and hope that these tips will help the days in hospital fly by.

And, if you’re not, then please do one thing for me and make sure you have a comfy bra (not just a sexy, lacy one that makes your bits spill out). There is no strong evidence to suggest wearing an ill-fitting bra will give you breast cancer. But I am a great believer that happy people are comfortable people. And, I want you all to be happy.

And, if you’re a man, you might just want to pass this advice on. I am not sure you need a bra (or big knickers for that matter).

Breast cancer lesson 132: Every end is a new beginning

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With the end of active treatment fast approaching (currently down as 15 September), my thoughts have been turning to celebrations and a way of marking my official independence day. It’s a moment I never thought I’d have to experience – let alone celebrate – but it’s a moment I intend to enjoy.

Of course, I have considered the more conventional route of a party. But when the people I want to thank are all across the country (not the mention the world), it doesn’t seem quite right (and the pink hearts thank you campaign is already well underway). So, I have decided on a less conventional course of action (would you expect anything less?). That’s why, on Sunday 14 September, I will be making my way to a starting line at Wembley for the Run to the Beat 10k.

Marking the end with another starting line sums up how I feel about moving on. It is fair to say that running (and exercise in general) has been a real lifeline for me over the last seven months. It has cleared my mind and kept me from busting out of my clothes. It has lifted me when I felt like falling (so much so that it is the subject of my latest blog of Breast Cancer Care – click here to read). And, it is something I want to make space for in the real Jackie world, when I return to it in October.

For me, October is a new start, a new chapter in my life. It’s what I have been fighting for all along, so it is only fitting that I run towards it and grab it with both hands. Another 10k will keep me focused (and help me conquer the fatigue associated with radiotherapy). And, this time, I want to run the distance (so I can convince myself that I can conquer an even bigger challenge next year – watch this space).

Coming so soon after my last run (and being the same distance), I feel it would be wrong to ask for sponsorship in exactly the same way. So, I have a plan. I will be running the race for the amazing charity CoppaFeel (adding to my work as a Boobette, which you can read more about by clicking here). Rather than sponsor me, all I am asking for is a pledge from you. This pledge is simply to buy me a drink to celebrate the end of active treatment. For every pledge I receive, I will make a donation out of my own money to CoppaFeel. As I see it, it’s a win-win situation. CoppaFeel gets much-needed funds, I spend my hard-earned cash on a great charity rather than London room hire, you don’t have to travel to an end of active treatment party and I have an excuse to see you all individually to make good on every pledge. I really hope you’ll get behind my idea and help me celebrate, so I can enjoy your company at the same time as raising money for a fabulous charity. Convoluted I know, but I have never been known for taking the easy route!

To pledge, all you have to do is post here using the comment field. Don’t worry, it might just be a cup of tea. And, it doesn’t have to be collected soon. But, now I can taste again, it won’t be a Ribena or a cranberry juice.

The treatment chapter of my life is one I am keen to close. But, I am in some ways thankful it was opened in the first place. It has made me see that if you spend your life wishing for the next big event, you will miss out on living. The next big event might not be one of your choosing. In life, it’s the every day – and not the once in a while – that matters.

Best get those tatty old running shoes out again!

Breast cancer lesson 131: Why some risks are worth taking

Oncologists and travel insurance companies have one thing in common. Neither seems to go out of their way to promote the idea of holidaying while on chemo. While my oncologist does take a rather relaxed view of getting out and about (he believes that infection is more to do with the bacteria you’ve already got in your body rather than what you’re exposed to), I am not sure even he would advocate packing my immunity boosting injections in a cool bag and setting off into the sunset in search of something I can actually taste. So, that’s why I didn’t ask him.

Now, before you think me reckless, I can assure you I informed my oncology nurse (haven’t seen my actual oncologist since April), researched all nearby hospitals, took down emergency telephone numbers and packed a whole bag of pills and creams to see me through (even without shampoos and hair products, you don’t travel light on chemo). I didn’t need a passport and the closest to extreme sports I got was walking up a steep cliff on the coast path. As far as risks go, escaping the big smoke for a breath of restorative fresh air and a few cliff top walks is a risk worth taking.

In many ways, it was the perfect holiday. We walked, we talked, we ate lovely food (some of which I could taste), we cycled the Camel Trail, we played pool, we relaxed and we even enjoyed the sunshine (as a childless couple, holidaying in July and August hasn’t happened since university)! As you saw from lesson 130, I managed to tick off number 17 on my Brighter Life list (click here for a recap).

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From a chemo perspective, I broke a few rules. I ate out in places I didn’t know. I ate shellfish and soft cheese. I gobbled up runny eggs. I may have slightly over-exerted myself on the Camel Trail. I carried a few too many heavy bags (less chemo more Lymphoedema risk). And, I went out in the sunshine. But, barring one spiked temperature that went down as quickly as it went up, I have returned relaxed, refreshed and a little sunkissed (factor 50 does allow a slight glow) and ready for my radiotherapy planning appointment and tattoos later this week.

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When it comes to holidays, I have always had a bit of a bad habit. For the first few days, I relax and revel in the fact we have a week away together. Then, as the halfway point comes, I suddenly become focused on time slipping away and the prospect of returning home. It always feels like everything speeds up as we race to enjoy what’s left of our break.

This time, however, I broke the habit. I am happy to say, I enjoyed every moment and every mouthful of food (the bits I could taste anyway). I enjoyed the life I’ve been given, rather than wishing it away.

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If I could sum up our holiday in a moment, it would have to be our walk to Rocky Valley, just north of Tintagel. Rocky Valley is small gorge-like valley close to the sea that is only accessible on foot. I heard about it on the BBC show Secret Britain back in 2011 (a man talked about it being the perfect location for his marriage proposal) and had been determined to visit it (back then in the hope the romance of the place would rub off on Duncan). Sadly, Duncan hurt his knee and couldn’t complete the walk in 2011 and, when we returned to the area in 2013, heavy rain stopped play! This time, however, we made it – navigating many steep paths in the process. I remember standing on the path explaining my 2011 proposal plot to Duncan (there was a lot of laughing) and thinking how lucky I am, not just to be alive, but to not have to think every romantic spot is a possible proposal destination (after 13 years, it was pretty exhausting). I also remember thinking that we nearly didn’t make the journey, content as we were with relaxing in and walking around Polzeath. It wasn’t planned (like most of my holiday adventures). But, we made the effort, made the most of our time there and ticked off something that should have been on my Brighter Life list. Reaching the little National Trust sign made me happier than I can describe.

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Of course, I am not advocating that we all pack our bags and travel miles from a hospital. But, taking a step away from London life, with its hospital appointments and daily cancer reminders, was really invigorating and helped me reflect on the last six months. For those of you contemplating a mini getaway on chemo, here are a few of my top tips:

  • Don’t forget your thermometer: You may get to leave the hairbrush at home, but a digital thermometer is a must. The battery on mine decided to play up just as I was spiking a temperature, but I am so glad I had it for peace of mind.
  • No scrimping on the sun tan lotion: Sun sensitivity is a big deal on chemo, so it’s important to cover up where possible and slap on the lotion. Always one to burn just looking at the sun, I was thorough in my application and am glad to have achieved a slightly healthy glow.
  • Set reminders for those pills: When life doesn’t follow its usual routine, it is easy to forget things like injections and pills. I packed everything from savlon to co-codamol for back-up, but set phone alarm reminders for my clonidine, injections and fluconazole. It worked a treat.
  • Know your options: I am a great believer that if you prepare for the worst, the worst won’t happen. That’s why I researched all hospitals in Devon and Cornwall and kept a list with me of essential numbers and addresses (along with the quickest route to a few key ones). Combined with my oncology card I knew I had all bases nicely covered, should the words Neutropenic Septicemia rear their head.
  • Give tap water a boost: I always order tap water in restaurants, but was slightly worried I wouldn’t be able to taste it properly and have to turn to sugary soft drinks (which get boring very quickly). Enter the humble lemon. This zesty treat transformed my tap water, making it taste lovely even with chemo mouth.
  • Work the menu: Eating out is a big part of a holiday for me. Determined as I was to enjoy it even with questionable taste buds, I opted for meals that included anything from lemon and capers to beetroot and white wine vinegar (the more acidic the better). Work out what works for your muted taste buds and then work it in to your menu choices. I nearly kissed the waitress on Wednesday when she gave me a free sample of white wine to see if I could taste it (it is always worth asking to see if they will oblige). It was beautiful, so we ordered a bottle!
  • Pack those snacks: There’s nothing like an extra strong mint or a jelly baby to help give your taste buds a lift. I also packed some spices so I could add some kick to our breakfasts and requested ice lollies for medicinal purposes (fruit pastilles lollies are quite exciting, I must confess)!
  • Take a break: Tempting as it is to pack the itinerary with day trips and adventures, it is important to pace yourself. After a few days of cliff walking, me and my bald head were in need of a quiet day or two. Rest and relaxation overlooking the sea is certainly much nicer and sitting in the shade in the living room at home!
  • Try something new: Whether it’s a walk to a previously undiscovered (by me at least) section of coast path, a ride on a steam train through the countryside or an activity you’ve been desperate to try, I would encourage you to seize the day. Enjoy every moment (as long as you don’t forget tip number 7 in the process)!
  • Make it memorable: We none of us know how many holidays we have left, and we are the only ones who can make each one a holiday worth remembering.

With a little bit of planning, a trip away needn’t be as risky as you think.

If you’re heading off soon, happy holidays! And, if you’re not, maybe it’s time to start work on a Brighter Life list of your own to encourage you to take the next step.

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

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

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

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

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

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

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

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

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

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

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

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

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

Breast cancer lesson number 120: True friends are the rainbows that come with the rain

Last night, lying in bed waiting for sleep to find me (I started the drug Clonidine for hot flushes on Monday, so am hopeful it might find me soon), I tried to imagine living through cancer without friendship. I imagined waking up (starting to forget what that feels like) to a silent inbox, to a phone with no messages and a living room without wonderful words and cards to keep me company. I imagined a Saturday without laughter and a Sunday without ice cream, teas and smiles. I imagined a world without all the beautiful faces I have come to love over the years. I imagined surgery without handmade drain bags and a new boob without chocolate (probably would be the size of a pin). I imagined life – and found I didn’t really have a life at all.

Friendship is such a powerful thing. But, I am sad to admit that it is something I have often taken for granted. That is not because I don’t love each and every one of the wonderful people that continue to inspire me and shape my world. It’s just that, my life before cancer felt so hectic that I thought doing my hair was a bit of a luxury (now I have the time to straighten it, it’s all shiny and bald). I remembered birthdays. I baked cakes. I made bath creamers in cupcake cases that looked like white chocolate (and forgot to label them – oops). But I really wasn’t as ‘present’ as a friend should be. I also have as many friendship circles as I do interests. I move between them (often on the edge), when I should dwell a little longer.  And for that, I am very sorry.

Cancer has a way of not just reordering those priorities, but highlighting just how important friendship can be. True friends (which also includes my amazing family and the lovely Duncan) shine a light on dark days. True friends are those with whom you can share a story or a silence. True friends just know when smiles are covering up tears. True friends don’t have to be close to comfort. True friends understand – and open themselves up to being understood. True friends accept who you are and help you become who you should be. True friends are the real wonders of the world.

So, this is my little way of celebrating all that is beautiful about friends. Through my pink hearts campaign (click here to read more) I hope to thank each and every one of you for being there when I needed you the most. For now, you’ll just have to take this as a down payment! I vow to be there for all of my friends because I know how important just being there really is.

I hope, wherever you are, you are thinking about all the friends that fill your hearts and your inboxes. Is there someone you’ve been meaning to call? Is there someone with whom you’d love to reconnect? Is there someone who makes you smile, but who you’ve never had the opportunity to thank? Well, there’s no time like the present!

There’s a wonderful saying (yes, another of those quotes that makes me happy): ‘Good friends will bail you out of jail, but a great friend will be sitting next to you saying: “Damn, that was fun”.’ While I am not about to throw caution to the wind and end up in jail (I have already committed one crime since diagnosis (click here to read) and that is enough to last me a lifetime), I do believe that experiences are made for sharing, shoulders for supporting and sides for standing by.

Here’s to great friends and to a future packed with great adventures!

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

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

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

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

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

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

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

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

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

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

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

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

Breast cancer lesson number 117: Turn your scars into stars

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

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

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

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

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

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

 

Breast cancer lesson number 116: How to do nothing – and not feel guilty about it

The worst kind of day on chemo is the kind that starts with you already wishing it was over. That’s the wish I expressed on the corner of my mum’s bed this morning when I was talking through my restless night, the peripheral neuropathy, the cramping of my hands and feet, the chronic fatigue, the feeling of heaviness (yet also emptiness) and the loss of taste I am currently experiencing. It’s a feeling the day is already wasted before it has even begun. If life were a pack of cards, you’d want to reshuffle and pick again. Trouble is, you can’t.

Strangely, it’s not the pain or the exhaustion I fear. It’s the guilt. Guilt for spending the day without the structure of a to-do list. Guilt for making ‘eating a banana’ an actual objective. Guilt for giving up on another precious day of life when my life itself was challenged just a few months ago. Guilt for seizing up rather than seizing the day. Trust me, that’s a lot of guilt. 

Of course, I have nothing to feel guilty about. Only yesterday, was I lying on the kitchen floor with my legs in the air after nearly collapsing. I have a fridge full of injections and a body full of pills. And, eating a banana when you have no tastebuds is actually something to be applauded. I just wish doing nothing was an art form I had mastered long ago.

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Taking time to do nothing has a way of bringing everything into perspective. Having sat here on the sofa for the last three hours – moving only to shed or add clothes and eat – I am starting to realise that you can get something from nothing. Because nothing is never really nothing. Nothing today is my body’s chance to recover. Nothing today is life’s little way of getting me to slow down so I can be strong again. Doing nothing today gives me a better chance of making something of tomorrow.

Google the definition of nothing and, under adjective, it says: ‘having no prospect of progress.’ In chemo terms, I would say a ‘nothing day’ is quite the opposite. It’s a necessary pause. And, if chemobrain is an issue, it’s probably the safest thing to do. 🙂

From this day forward, I, Jackie Scully, promise to do nothing if nothing is the right thing to do! And, I would urge you to do the same – unless you’re an extreme procrastinator and really should keep busy. 

How to start? I have been saving the Game of Thrones boxset for just such an occasion. I may be gone for some time…

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Breast cancer lesson number 115: Think positive and positive things will happen

Strange as it may sound, I am starting to enjoy chemo day. This has nothing to do with being hooked up to toxic drugs and a saline solution (oh yes, the beautiful saline) or visiting the hospital (third day in a row) and everything to do with the positive routine I have established for myself.

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It starts – after a steroid-fuelled restless night – with the baking. Today, we tried out a chemo cookie recipe from one of mum’s beautiful friends alongside an experimental lemon and ginger muffin recipe (complete with ginger and rhubarb jam tucked away inside). Both were topped off with a drizzle of melted lemon chocolate. It always feels good to do something for other people and the thanks I got at the unit today meant the world to me. I know some of the cookies ended up as one nurse’s lunch (she was too busy for a break). I also got a wonderful phone call earlier thanking me for my latest pink heart, so I have pretty much smiled all day long.

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Next up is a good walk. By Sunday, I will probably find it increasingly hard to get round Greenwich Park due to the bone and muscle pain, so today is a good day to make the most of my legs while they are still working! In the absence of tastebuds, exercise has been my comfort eating. I do it to feel better and it is certainly does wonders for the waistline and the soul.

People often worry about what to eat before chemo. For me, I like to keep things simple. A bran-based brekkie keeps the constipation at bay and a simple lunch (with an afternoon appointment) means you go well fed, but without having eaten anything you’d avoid for life if you saw it again. My time at the chemo unit is always packed with planned-in treats!

By the time I reach the hospital, I am ready for action.

For those who have never been to a cancer day unit (and I hope if you haven’t, you never will), here is a quick glimpse behind the scenes:

1)     First you arrive, book in, hand over your appointment card and receive a hospital wristband in return (printed out of special wristband paper).

2)     Next, you wait in the lounge (this time in front of Wimbledon) until the drugs have been delivered and the chair is ready.

3)     Once in the chair, the nurse allocated to your zone takes your blood pressure and checks the oxygen levels in your blood.

4)     Providing all is well, the anti-sickness meds (Emend and Domperidone in my case) are administered.

5)     Once they’ve settled in the stomach, the PICC line is flushed and the drugs are hooked up to both a pump (so they can be released over time) and the PICC tube.

6)     Then (with Docetaxel), you get a good hour to eat (lollies and muffins), drink (tea, water and hot water) and chat.

7)     Summoned by incessant beeping from the pump, the nurse comes back to do a final saline flush.

8)     After everything has been disconnected, the rucksack-sized pharmacy bag arrives, complete with eight injections, and enough pills to make your stomach rattle.

9)     Before being released, the last job is to pick up the appointment card. We think mine may have gone home with another Jackie, so I had a nice new one to take home today.

And that’s it. Providing you don’t have an allergic reaction to the drugs, it is a fairly pleasant experience.

Back home, I am happy in the knowledge I have five behind me and just one poison to go. I have started planning my last chemo day (let’s ignore the fact I have radio and 10 years of hormone therapy for the moment) and I am pretty excited. This is the last cycle that ends with another poisoning. And that means the end of chemo (albeit six weeks away) is finally in sight.

It’s been a happy Friday for me. And, I hope it has been a happy Friday for you too!