Month: August 2014

Breast cancer lesson 146: Time flies when you’re having a blast

It seems like only yesterday I was lying down to face my first tattoos. Now, four radiotherapy treatments down and I have completed my first week. There’s nothing like a daily mid-afternoon date with the hospital to make those days disappear – and fast!

So what have I learned from these daily doses? Here’s a quick rundown:

1) Don’t forget your dressing gown belt: it may seem like an insignificant detail, but a dressing gown without a belt just means you will flash more people than is really necessary.
2) Turn it around: to preserve your dignity a little longer, wear your dressing gown the wrong way round. That way, when you lie down on the bed, the technicians only need to reveal the blast area.
3) You can wash those felt-tip pen marks off: thanks to all those who advised me of this. It does seem like they only need to play noughts and crosses on your boob at the first session though. It’s just been one mark ever since.
4) Doublebase cream is your friend: what I love about this twice-daily (at least) ritual is the fact that it forces me to do a bit of scar massage at the same time. Doublebase may look thick and gooey, but it is actually lovely on the skin. Creaming first thing and at night works for me (it has to be two hours before treatment so it has time to absorb).
5) Practise your best rag doll pose: Tempting as it is to help the technicians get you into the correct position, it is best to let yourself go heavy on the bed so they can get wiggling.
6) Arriving early for an appointment is no bad thing: while I have never been called before my slot, it is better to check in than kill time in the hospital foyer, so you are more likely to be seen on time.
7) Keep it loose: while it is still early days for the skin, I am already seeing the benefits of keeping your clothes loose to reduce friction. It’s also good to carry your handbag on the other shoulder.
8) Clear that diary: radiotherapy schedules do change. It’s day four and I am on my third timetable. While you can move things around, it is good to avoid anything that puts you under extra time pressure (especially if your treatment is taking place underground with zero reception).
9) Expect to be taped up…but only on the first appointment: there is more setup involved at the first treatment, so you may find you have wires taped to your boob. Photos are also taken daily for the first few appointments (in my case four) before going weekly. Things speed up when there’s no topless photo shoot involved!
10) Don’t forget to breathe: if, like me, you become fascinated by the way the laser moves across your skin when you breathe in, don’t try and stop it by holding your breath (although this may be different if treatment is to the left side close to the heart). As a friend pointed out, you then have to breathe deeper to catch up – therefore moving the laser even more.
11) Keep that jewellery to a minimum: the post-radio hunt round the handbag for the rings, bracelet, watch and earrings keeps me in the changing cubicle for so long, I am convinced they must think I don’t know how to dress myself.
12) Pack that radio bag – and leave it that way: one foolproof way to remember your dressing gown (and belt), radiotherapy cloth, good book and appointment card, is to keep it together in a bag and leave it by the front door. Avoids all that last minute rushing too (unless, like me, you have sourdough bread in the oven that refuses to go brown)!

If reading this list makes you feel exhausted, you’ll appreciate just how significant the latest developments in radiotherapy treatment really are. In July, news reports applauded the introduction of intrabeam radiotherapy, which is administered at the time of breast surgery when the tumour is being removed. While I believe it can only be used when the tumour is contained within the breast tissue with no further spread, if this becomes standard practice, it could transform the lives of those going through treatment. As much as I admire and love my hospital for all it has done for me, I think daily visits are a little too much.

Four days in and I have my routine. Just 11 sessions left to go until the end of active treatment! Woohoo!

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Breast cancer lesson 145: May the force be with you. When radiotherapy meets Star Wars

Of all the things I thought would be discussed in a radiotherapy treatment room, Star Wars was not one of them. Today, however, after a bit of banter about how difficult it is to describe the experience of going through a blasting, one of the ladies handed me a piece of paper with the following words on it: ‘Linear accelerator Star Wars (or LINAC)’.

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Typed into Google, this is what you get:

For those unacquainted with a radiotherapy room (you lucky things), this Star Wars figurine is sat on a linear accelerator (or LINAC), which is the device most commonly used for external beam radiation treatments. I love the fact he’s zapping planet tumour with his red laser beams!

Ok, so while not quite as futuristic as a Star Wars movie, I think it demonstrates the fact radiotherapy is quite unlike another other form of medical treatment. It also demonstrates that, even in a 15-minute appointment, there is always room for a bit of banter.

Even without the ‘force’ on my side, today’s blasting was so much more relaxing.

No tapes, no wires, just one felt-tip pen mark and a lot more laughter. (Apparently the appointments get quicker as they become more confident with the positioning. I will move to weekly photos after day 3 if everything is still ok.) I was also in and out of the hospital within 25 minutes flat, which is certainly a new personal best in terms of appointments.

There was even time for a photo or two given things were running to time.

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This is Elekta 4. She may look like a giant version of something you’d find at the hairdressers (and if you don’t agree, forgive me, I haven’t been in a while :-)), but I certainly wouldn’t mess with her. She can deliver high-energy x-rays, which makes her a pretty special cancer-fighting machine. You can also see the plinths on which I have to rest my arms while the dose is delivered. (Once again, I had issues with tingling and a dead arm, so am hoping that will improve.)

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And this is the autumnal forest scene designed to distract me from the ceiling tiles (Elekta 1 doesn’t have such a scene). I am so glad it was there, because I spent most of the treatment suppressing the urge to wriggle about (why is it when you are forced to lie still you are so tempted to move?). It also distracted me from the fact that every time I took a breath, I could see the green laser moving. I decided it might be best to hold my breath, but that wasn’t particularly fun. I then decided that I think way too much when left alone in a room with a high-tech piece of medical equipment. It would be far better for me to imagine myself walking among the autumn leaves, which I think is the idea. 

It’s back to the ceiling tiles for tomorrow’s blast. I can do without the autumn leaves, but now have high expectations for the level of banter now possible. If you have a burning question about radio (or other interesting radiotherapy-related You Tube clips) please post here. Happy to ask away.

Two down, 13 to go…

Breast cancer lesson 144: How to have a blast in the radiotherapy room

Thank you Emily Barr. Oh, how I needed you and your gripping novel in the radiotherapy waiting room. Once more the odd one out (half the age of anyone else waiting and one of the only ones not being asked to drink water), a good book was the only thing stopping me from staring aimlessly at the ceiling and wishing I had a few more wrinkles and a bit more hair (except for a few men, I was the only baldie as well as the baby of the group).

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Of course, the need for reading matter wasn’t the only discovery I made at this, my first radio blasting. I think the most essential item I won’t be forgetting tomorrow is my dressing gown belt. Having applauded myself for remembering to pack my dressing gown, I was amused to learn that, without its belt, it is about as useful at preserving your dignity as a hospital gown. Wearing it backwards, so it can be whipped off at the last minute meant that I gave all that could see me a good look at my naked back. It was a small crowd, but having not had to strip for a good few weeks, I was a little out of practice.

Before the main event, I was treated to a quick overview, reminding me of the need to cream up and not shave (not that there is anything to shave). I was asked to sign a form declaring I wasn’t pregnant, recall the date of my last period (to which I answered ‘March-ish’) and confirm I understood the daily drill. I was slightly surprised to be handed a new sheet highlighting that a good number of my appointment times have already been altered (and that I will be meeting Elekta 1 and 4 now). It looks like my life (and my diary) is now firmly in the hands of the NHS for the next three weeks and it seems I will now be enjoying many an evening in its company!

As appointments go, it was pretty futuristic, if you ignore the office-like ceiling tiles and the old-fashioned swimming pool-like changing cubicles. Here’s a quick rundown:

  • On entering the room, I was asked to lie down on the bed, position my feet up against a foot rest and raise my arms above my head (in exactly the same way as I did for the planning appointment). I was then wiggled around a bit (it’s very important you don’t help with the wiggling even though you want to be useful).
  • Once in position, the three people in the room started speaking in code (basically a series of measurements) and drawing on me in felt tip pen to ensure they lined me up correctly. Green lasers and what looked like a ruler were projected onto my skin and I was even treated to a few bits of tape, which were fixed to the breast and above and attached to wires. I believe this is to help them work out that the right dose is getting to the right part of the treatment area.
  • When the team were happy with my positioning, they left the room while the chest area was x-rayed. This is to make sure the position matches that of the radiotherapy planning appointment. I, meanwhile, just had to lie still and go to my happy place (which included trying to get intimately acquainted with those ceiling tiles).
  • After that, the machine clicked a few times to help the team focus in on the area to be blasted. The clicking was followed by a series of fairly loud noises (a bit like tinny buzzing). Then it was all over and I was free to leave with my felt tip pen marks and belt-less dressing gown.

The entire appointment (excluding waiting time) lasted about 25 minutes.

Was it painless? Not completely. While the treatment itself caused no pain, the ongoing tingling problems I have in my hands meant that when I raised them above my head, my right side decided to go dead (in that way limbs often do in bed). Normally, I would just move and shrug it off. Fifteen minutes in the same position without moving a muscle, however, and I wasn’t sure my arm would ever come back to life. Thankfully, it is typing now, so order has been restored.

By the way, I now know what this interesting piece of cloth is. It is less a medical gismo and more a piece of material designed to stop me sticking to the bed. It also helps them move me around without (in the words of my radiotherapist) ‘any heavy handling’. I thought it had magical properties. But, no, turns out it is just a cloth!

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How does it feel now? My boob is twitching slightly but otherwise fine. I feel a bit sleepy, but that is probably more to do with the build up than anything else. Mostly, I just feel a bit weird (nice and medical for you). I must confess, being back in hospital, reminded of the invisible illness that tried to steal away my life, while being blasted with invisible doses of radiation is actually not that fun. And, the worst part is, I have to do it all over again tomorrow – at 4.45pm. Rush hour and radiation! Whoop! And this is supposed to be the easy part!

If anyone knows whether or not it is ok to wash off these rather exciting black felt-tip pen marks, please let me know.

Now all I need to do is find that dressing gown belt!

Breast cancer lesson 143: Let the blasting begin!

Radiotherapy is now all that stands between me and the end of active treatment. 

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Tomorrow, I will go in for the first of fifteen blasts to my chest area and collar bone. And, in three weeks time, (if we ignore the fact the side effects are often worse a few weeks after treatment, I will still have side effects from chemo, no hair and ten years of drugs to take – not to mention a new nipple and tattoo to secure), it will all be over! No more needles. No more frequent visits to the hospital. No more cancer. Just me, a daily reminder in pill shape form and the determination to see the brighter side of life.

Up until now, I have seen radiotherapy as less of a treatment and more as the only thing stopping me from closing the door on this hospital-focused chapter of my life and moving forward. Now, as the day approaches, however, I confess I am a little nervous. I have been told that if you can handle chemo, you can more than handle radiotherapy. But, never one to get complacent, I don’t think I will feel entirely comfortable until I have stripped off and lifted my arms above my head a few times. 

Of course, while it hasn’t plagued every waking moment, I am prepared for this next stage. I have my dressing gown, appointment card and that strange piece of cloth I was given at the ready and I’ve been creaming the area since Thursday to get the skin ready for its close up. I have my tattoos (which still make me laugh every time I look at them) and I have already been thinking about which loose clothes and bras I can wear that hopefully won’t break the skin (they suggest you don’t wear dresses so you don’t have to strip each time). The information sheet warns against the wearing of ‘tight elastic undergarments’. I am just hoping one of my bras fits the bill otherwise running may prove a little tricky. 

Cream recommendations vary from hospital to hospital. For me, the recommendation is Doublebase, which I would describe as a gunge-like gel. Skin reactions are common, however, so I am creaming up two to three times a day and will avoid any other deodorants and shower gels for the period (thank goodness they removed my sweat glands in surgery). The advice is to use a small amount on the treatment area, massaging it in with the fingertips. The aim is to get a light covering so the cream absorbs easily. 

Amusingly, I was told that the only way radiotherapy can be effective is if you don’t miss a session and are blasted for five days in a row. I guess if that were completely true, we wouldn’t be honouring the August bank holiday! My treatment now starts on a Tuesday and finishes on a Monday! 

Oh, and just in case you were wondering, external radiotherapy does not make you radioactive. I will not glow yellow or look like an extra from a nuclear disaster movie. I will just be me – but maybe with a red boob and baggy tops! 

I am ready to meet Elekta (yes, my radiotherapy machine has a name). Wish me luck! 

NB: if you’ve recently discovered you’re due to have radiotherapy and would like to know more about the planning appointment, click here to read lesson 133. 

Breast cancer lesson 142: Why it’s time to eat (well), drink (water) and be merry

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With my tastebuds now in full working order and the end of active treatment in sight, I have started to think a little less about standing on cliffs with no hair and climbing mountains (I have my brighter life list for that – click here to view) and a little more about the small adjustments I can make from now on that will help me live a healthier life.

Read the headlines and you could be forgiven for thinking that that ‘life’ now needs to be one heavy on blueberries, packed with alkaline foods and without sugar. The more I read about cancer and diet, however, the more I realise what a complex subject it is and that oversimplification of certain ideas can do more harm than good. I certainly refuse to believe I got cancer because I am partial to a bit of buttercream now and again! 

Interestingly, diet it is not something that has been tackled by my oncologist (the only thing we discussed was the importance of eating what you can tolerate on chemo to keep the calories up and not making any major adjustments to diet while undergoing treatment). In fact, the only consistent advice I have received has come from three unrelated cancer and food seminars that all point to one thing: a healthy, balanced diet (as explained by this eatwell plate, which indicates the types of foods that should be making an appearance at every meal). It is not dissimilar to advice dished out in home economics lessons of old. And, while it does advocate things like blueberries, flax seeds, brussel sprouts and quinoa (all of which I like), bread, cake and cheese are still there, holding their own (yet in a small, concentrated way).

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I am no authority on diet, but I can navigate my way through the ‘superfood’ marketing spin and a bit of basic biology to recognise that healthy eating is more about moderation than it is banning foods completely and depriving yourself of the odd treat. Breast Cancer Care produces some useful information on the subject (click here for its Healthy Eating after treatment page, which is great starting point). And, Cancer Research UK, has written a piece a clear overview debunking certain cancer myths, which is worth a look (click here for more).

The truth is, for all my talk of victoria sponges, chemo cookies and cobb loaves, I think my diet is actually ok (I am already nearly back to my pre-treatment weight for starters, which is good sign). I keep a food diary, so I can build up a realistic picture of my food intake. I cook meals from fresh that are heavy on fish and vegetables. I also think of blueberries as a bit of a treat. And, while lunch is still a bit of an Achilles heel for me (if you have any great lunch recipes, please do share), eight portions of fruit and veg a day is sometimes a bit of a push, my breakfast is many shades of beige and I’m never one to refuse a decent biscuit, I think healthy eating for me means a bit of fine tuning rather than a revolution in the kitchen! I’m after a life of quality as well as quantity (still aiming on 92). And, quality means a few of my favourite things making the menu each week.

It is fair to say, I love food (I remember planning my school life around the menus I insisted mum write up on the fridge door). Meal planning has its own designated notepad in the Scully/Sloan household and I love nothing more than spending a few hours each week pouring over cookery books. There is, however, one area for which I get a huge black mark. While I am good at eating, I am not so good at drinking (by which I mean lack of water and not excess of wine).

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I reminded of this fact at my penultimate shiatsu appointment at the Haven on Thursday (click here to find out more about the Haven’s free complementary therapy programme for breast cancer patients). My therapist stopped me while I was merrily listing out my remaining post-chemo side effects and asked: ‘Jackie, do you drink much water?’ Rather than replying straight away, I first tried to recall the recommendations for water drinking to work out how dismal my water intake actually is. I couldn’t (the European Food Safety Authority says about 1.6 litres a day for women and 2 litres a day for men), so instead I said (rather sheepishly): ‘How much should I be drinking?’ I think that comment told the therapist all she needed to know.

Thankfully, what followed wasn’t a lecture on my copious tea drinking, but rather a piece of useful advice. The therapist didn’t talk in litres or numbers of cups (she argued that the main thing was to increase intake rather than set rigid rules). She did, however, suggest I make one cup of hot water to go alongside each cup of tea that I drink (I am at the kettle anyway). It’s a small and simple adjustment, which should make a big difference. I have already started. And, I already feel like I’ve earned a few brownie points. (As an aside, people do often count tea drinking in their daily fluid intake, but given it tends to dehydrate, it feels like cheating). If you have any water drinking strategies, do share them. 

The benefits of water are well documented (everything from facilitating chemical reactions in the body to removing toxins and weight and boosting the metabolism). When I couldn’t drink it on its own on chemo, I really missed it. I like it. I am just not so good at getting enough of it (except in the days after each chemo poisoning when my mum was sat there basically feeding it to me). So, from now on, I vow to fill up my glass (and my bottle), and give my body what I give the garden: a good watering!

Let’s raise a glass to water (hot, cold, with lemon or without). May it be the liquid of life that keeps our spirits and productivity levels high – and our need for senna low.

NB: Given my latest resolution, now might be a good time to pledge me that drink to celebrate the end of active treatment! To find out more about my pledge idea and how, by pledging, you will be generating cash for charity, head to lesson number 132 (click here to read).

Cheers!

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

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

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

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

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

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

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

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

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

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

Happy kneading!

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

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

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

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

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

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

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

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

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

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

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

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

Hi Aggers and the TMS team,

I hope you are having a lovely day.

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

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

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

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

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

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

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

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

Kind regards,

Jackie Scully

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

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

Next up? Making a ferment.

Breast cancer lesson 138: The ten things no chemo patient should be without

When diagnosis day came along and put a spanner in my plans for the new year, I made an extra resolution. And, it’s one I’d like to think I’ve kept. As soon as I walked out of that consulting room (well, maybe a bit later after I’d had a good cry), I decided that if I was going to go through the pain of active treatment, I would use it as a way to help others. From the beginning, I haven’t been in search of pity or sympathy (although I have learned that if you hug for about six seconds first thing it can change the course of a day). I have been in search of tips to brighten my journey – and the journeys of those who face cancer treatment in the future.

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I love a good kit list (reminds me of preparing for camp as a child), so it has been a real joy to work on one over the last few months. I have poured over charity booklets (Breast Cancer Care and Macmillan being the most comprehensive), I have quizzed patients wearing lovely hats in hospital waiting rooms, I have Googled until my hands ache for products and solutions to help make life that little bit easier. I am a lot happier for it and I hope, by writing about it here, you (or someone you love) will be a lot happier too.

On the menu bar of my blog, you’ll find a new section called Cancer Kit List (click here to view). I have started with chemo and will be adding surgery as soon as I’ve typed up my notes. Of course, don’t have much radiotherapy wisdom yet, because it needs to happen first!

The emphasis here is on products rather than general tips (I am already working on those for later in the year). It’s personal and is in no way backed by companies or medical advisors. But, it’s my little way of shining a light on what can be a very dark time.

If I were to pick out just 10 things from the list (putting all medicines and prescription mouthwashes to one side) to create the ultimate chemo survivor’s guide, I’d select:

  1. Digital thermometer: This handbag essential will ensure you don’t have to camp out at A&E to find out the difference between a temperature and a hot flush!
  2. Dark nail varnish: Ok, so work colleagues and friends may think you have gone all goth on them (or arty in my case). But, by painting your nails, you can both strengthen them and disguise any discolouration and chemo lines! The choice of colours is endless. You could even use them to match your mood. Who said cancer treatment couldn’t be fun?!
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  3. Extra strong mints: These little mints can reach tastebuds you thought were gone forever. I am still finding packets all over the house after stocking up mid chemo!
  4. Smoothie ice lollies: Making ice lollies in a kit from my childhood was fun in a nostalgic sort of way, but eating frozen smoothie lollies was about as exciting for me as ham on Christmas morning (and that is about as exciting as food gets for me)!
  5. A yoga bamboo turban: Whether you’re wedded to your wig or fancy tying complicated knots in your headscarves, I am a firm believer that we all need one easy-to-put-on-and-actually-rather-lovely hat. The yoga bamboo turban (made by Christine headwear) comes in so many colours and is so versatile (sport, relaxing at home, parties, work etc), you’ll wonder how you ever lived without one!
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  6. Tissues: Ignore a lack of nose hair at your peril. And eyelashes for that matter. Also doubles up as toilet paper when you’re out and about, which is most useful!
  7. Children’s toothbrush: It’s a fact that children’s toothbrushes are far more exciting and colourful than adult equivalents. They are also, however, soft enough to look after your sensitive gums during chemo. Adult ones feel like you are brushing with a twig covered in spikes!
  8. Ribena: Ok, so you may not be a fan of the red stuff (especially after Epirubicin), but now is the time to discover just what water flavourings you do like! When the tastebuds disappear, water (which is essential for flushing the system) will be anything but appetising.
  9. LIMBO: Try showering without this waterproof arm protector when you’ve got a PICC line in and you’ll soon realise that attempting to keep one arm dry is neither fun nor practical.
  10. Lightweight scarf: With temperature changes, hot flushes and skin sensitivity on chemo, you could be forgiven for thinking you need a suitcase of clothes just to go for a walk. Big summer scarves (and there are some lovely ones out there) will be your jumper, your neck protector, your sunscreen, your windbreak and your style statement. And, they fold up to virtually nothing when you just want the comfort of knowing it’s in your bag if you need it.
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Of course, there are many others (hence why I have started the cancer kit list), but these are the ones that continue to raise a smile, even though the chemo days are already starting to fade.

Every day, someone is called into a hospital consulting room and told they have cancer. Every day, someone will face a side effect of treatment for the first time and find a way to cope with it. By sharing tips and advice, it is my hope that every day in a cancer patient’s journey is one they are prepared to face.

Breast cancer lesson 137: Why I am looking for happiness in the everyday

Fifty days ago, I challenged myself to take part in the #100happydays project (click here to read more) as a way of focusing on all that is good in the world before the end of active treatment (and, as it turns out, slightly beyond).

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Am I happier as a result of posting pictures of positive moments on Facebook for the last few months? If I think about the process of finding an internet connection when away from home and uploading pictures, I would say not. But, when I think of the way in which the project has forced me to live in the present, make things happen and take note of the parts of the day that make me smile, I would argue that, even though I am still only half way through, it has already been a resounding success. I wouldn’t say it has made me happier, but rather reminded me of just how happy I really am.

When I think back over the photos that have made the cut (click here for the first 20 and see below for the following 30), I am not faced with a montage of far-flung destinations and once-in-a-lifetime opportunities. Yes, there are a few moments that are unlikely to be repeated (my hair is growing back so bald cliff walking is out, and I doubt my name will ever feature in The Guardian again). But, what my photo reporting highlights is that happiness exists in the everyday. It’s on the doorstop, in a teacup, in friendship, at the park and in a homemade loaf. Simple pleasures lead to lasting smiles.

On day 41, for example, I talk about a play called The Blue Bird, which is mentioned a couple of times in Gretchin Rubin’s The Happiness Project. The play is about two children who spend a year searching the world for the Blue Bird of Happiness, only to find it waiting for them when they finally return home. I think this is something we could all quite easily apply to our own lives. How quick we are to attach happiness to life’s big events, when what we should be doing is making the most of the everyday, accepting that big events are a bonus.

I may have peripheral neuropathy, sore nails, sleep deprivation and chicken fluff for hair, but, right now as I write this blog, I can honestly say I am truly happy. Cancer has taken a lot, but given me so much in return. I have looked hard at myself in the mirror and have decided that life is too short to not smile back at the reflection.

It’s true that you can’t be happy all the time (and in many ways you wouldn’t want to be). But, if you can seek out and grab hold of little moments of happiness, it will make those moments of sadness so much easier to bear.

Good luck finding happiness in your day.

Here’s a quick overview (click here for the first 20 if you missed lesson 124) of the last 30 day happy days:

Day 21: Today is a mini milestone day! It marks the last day of my zoladex implant injections. Here’s hoping this giant needle, which has created a constellation of six dots on my left side, has helped in the fight against infertility caused by chemotherapy. I am happy to have been offered it, but as the cause of lots of my hot flushes (it is designed to send you into the menopause), I will be happy when the drug is officially out of my system in four weeks time! Thank you medicine for advancing in this way and thank you nurses for making the giant needle as painless as possible (even though this hole is still bleeding as if in protest). One more milestone down! Yippee!

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Day 22: Lunch, lollies and smiles with my mum. What better way is there to spend a Wednesday (if we ignore the hospital trip and blood test that is). Three cheers for mums! They make this world a happier place – and they help with the washing! I love my mum very much and wouldn’t be smiling through treatment without her.

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Day 23: Last chemo day tomorrow looms, so what better way to celebrate its arrival than with a cake made up of pills! It’s not made of ginger (vanilla syrup sponge with buttercream instead), but looking forward to cutting into it tomorrow before Tax steals my tastebuds for one last time. Feeling happy and very excited!

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Day 24: This is it! Four months of poisoning and am about start my last three-week chemo cycle! While there are dark days to come and then radiotherapy, today is about celebrating and chemo cake. Thanks for the sign Shelley Varley! This could just be the happiest Friday of 2014 so far!

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Day 25: Green things from the garden! If you’ve never tried growing your own veg, I would urge you to start. It is such a wonderful feeling to take something from the ground and walk it metres to your plate. Chilli peppers, broad beans, courgettes and dwarf beans for dinner it is. Excited! Hope you’re having a wonderful Saturday.

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Day 26: a beautiful afternoon catching up on 14 years with a beautiful friend. I look forward to writing in this wonderful notebook when the sparkle of inspiration hits me. Thank you for you. Must get a picture next time!

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Day 27: I nearly lost my great aunt at Christmas two years ago to illness, so it has been amazing to spend this sleepy post chemo day in her company. The gift of family is a great gift indeed. She is one of life’s fighters and is making the most of the moments life has gifted her. Tired, but very very happy.

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Day 28: Inspiration is never far away if you open your eyes to the world. It might come in the form of a message on a billboard, a note through the door, or even a clipping from the newspaper. Today, it’s a pitta recipe ripped out of the Metro (apologies to the next reader). Something I have never tried to bake and now I have the recipe and the time to make it happen. Hope you’ve found something to inspire you wherever you are today.

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Day 29: There are few things that excite me more than having a diary packed with special moments to enjoy. So thrilled that this morning’s post has brought with it the date of MY LAST DAY OF ACTIVE TREATMENT. 15 SEPTEMBER here we come! Ignoring the 10 years of drugs and potential post-radiotherapy side effects, this is one day that will be cherished for the rest of my life. 54 days to go! Just need to think of a way to celebrate!

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Day 30: Cut flowers from the garden are a gift from nature. What I love so much about them is the fact you have to keep picking them to get bigger, brighter and more beautiful flowers. So, pick them I will! Applied to life, I love the idea that by getting knocked down, we have to chance to come back stronger. Who knows? I might have a few more petals when this all ends! Here’s to beautiful flowers!

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Day 31: the great British sunshine. When it shines, I find it hard to think of anywhere I would rather be. Have a wonderful weekend one and all.

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Day 32: Play! We often do so little of it, yet it always has a way of making me smile. It has been so long since I played snooker, I couldn’t even remember how to set up the balls! More play in future methinks. Hope you are all finding ways to play today.

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Day 33: Sometimes, there are just no words to do justice to the kindness of others. I think this picture says it all. Thank you so much Hannah Guy and Anne Johnson. It means more than I can say. Enjoy the mud – and great tutus!

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Day 34: Number 17 on the brighter life list is officially ticked off. Standing on top of a cliff with no hair is as liberating as it sounds! When I set out on the treatment journey I vowed to do more of what makes me happy. The brighter life list (on my blog smallboobsbigsmiles.com) is an important part of this. If there’s something you’ve always wanted to do, but somehow find a way to put it off, start planning it now. You can’t see round the corner, so you’ve got to make the most of the path you’re on. Enjoy!

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Day 35: it was only a matter of time before ‘tea’ made an appearance on the happy days list. For me, always best served large in a cup or a mug. Milk not optional. I gave it up for a year and remember the first time I tasted it again. It was amazing. I don’t think I will ever deprive myself if this simple pleasure again. Best drink ever!

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Day 36: arguably the best bread and butter pudding in the world. It is the third time I have eaten this particular dish (first being 2011 when I tried bread and butter pudding for the first time). With its own personal message from the chef about why he loves it, it is pretty special. Question is, will he ever divulge the recipe? Whatever indulgence you crave, seek it out. A great pudding is a little way to raise a big smile.

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Day 37: spending time with my beautiful godson. Children, with their curiosity, zest for life and innocence, are a joy to be around. I feel very blessed – even if I was quizzed on who lives down the toilet at story time!

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Day 38: the best days are the ones where you learn something new. This is a grotter on Whitstable beach. We came for the fireworks at the end of the oyster festival. We got not just fireworks, but lots of little lanterns on the beach crafted from oyster shells. It was a beautiful sight. Have a wonderful weekend one and all.

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Day 39: Time together with people you love is always time well spent. We all want more hours in the day, but what’s important is making the most of the hours we have. I know I am, and I hope you are too. Here’s to spending the day with the people who make you smile! Happy weekend one and all.

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Day 40: home and happy. I always love coming home after a trip away. I think I appreciate it just that little bit more. This time, we had some rather unexpected GIANT vegetables waiting for us. That’s base for the chutney sorted for this year. Just got to freeze them! Hope you’ve all had a lovely weekend.

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Day 41: How lovely it is to exercise in the sunshine in such a lovely part of London. I feel very lucky to have Greenwich Park on my doorstep and feel spoilt for choice with the many paths there are to discover. Beauty isn’t hard to find if you look around you with a thankful heart. In her book, The Happiness Project, Gretchin Rubin cites a play called The Blue Bird. The play is about two children who spend a year searching the world for the Blue Bird of Happiness, only to find it waiting for them when they finally return home. May you find happiness where you live.

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Day 42: Happiness is homemade bread, homemade granola and an email from one of my favourite restaurants with their bread and butter pudding recipe. I always think things taste better when made by hand with a healthy helping of love. I have decided to try and go a year without buying a sliced loaf. That means I’ll either be baking lots of bread or going without! Should be fun. Indulge your passions and you will be rewarded.

As a side note, thanks for all the pledges so far. If you haven’t already, please head to my blog to read about why pledging to buy me a drink can raise funds for a great charity (click here). Thanks.

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Day 43: Cleaning (and decluttering in general) is a great way to reengage with your possessions. This fountain pen, which was bought for me by my grandparents (they engraved it with my name, which makes it extra special), hasn’t seen the light of day in years. But today, having rediscovered it, it has a new cartridge in it and is ready to go. I think sometimes we are so busy looking for the next thing that we don’t often appreciate what we already have. I urge you to rummage through those drawers to see what treasures you can find and bring back to life! Happy hunting.

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Day 44: Today’s happy moment comes not from my first tattoo (more on that later), but from a little surprise. Duncan Sloan’s pink shorts have made it onto the homepage of the Guardian website. The Life and Style section (click here) picked up my Breast Cancer Care blog about running and we’ve made it onto the Running Blog. That means Emily Pinkerton, Fran Walker and Robert Pinkerton have made the nationals! Three cheers for Duncan’s pink shorts!

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Day 45: Utopia does exist. It’s in my TV and it is an amazing series oozing with vibrant colours that I have only just discovered. I love a great TV series addiction. Somehow, life doesn’t feel complete without one. Yes, I appreciate I am miles behind. But, at least I got there in the end.

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Day 46: not pretty I’ll admit, but happiness is feet out of heels after seven hours in them at a wedding is the best feeling in the world! I don’t think I was made to wear anything other than a ballet pump.

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Day 47: the first glass of post-chemo wine I can actually taste. Oh my, it tastes good. The only good thing about being deprived of something is the joy it brings when you get it back. My little bit of heaven on a Sunday night. Hope you’ve found yours! J xx

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Day 48: how wonderful it is to learn something new! Today it is a word: ‘Hygge’. This Danish word means ‘creating a nice, warm atmosphere and enjoying the good things in life with the good people around you’. If we Brits had such a beautiful word in our vocabulary, maybe we too could be considered among the happiest people in the world. Here’s to a life with more ‘hygge’!

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Day 49: Number 9 on the brighter life list ticked off! Lovely walk round the Olympic park with mum and dad. Visited the velodrome and have worked out my route to the aquatics centre when I am once more allowed to swim! It feels great to be able to start ticking things off! The brighter life list has given me a focus. Hope you can find your focus too.

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Day 50: I love finding shops in London where skilled people can fix things without charging a fortune. My watch is ticking again and was actually fixed in front of me (instead of sent away to expensive battery sorting elves for weeks on end). I feel naked without my watch and I never get bored of people asking me why I am consulting my bracelet to tell the time . Time is so important. It slips by and, once spent, is lost forever. Here’s hoping ithis watch and I enjoy many new batteries!

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