Category: Reflections on cancer

Breast cancer lesson 152: Ten post-treatment ‘firsts’ guaranteed to raise a smile

On By Jackie ScullyIn Moving forward, Reflections on cancerLeave a comment

When I experienced my first proper shower post PICC line removal (no radioactive-looking arm sleeve in sight) and actually tasted my first glass of red since chemo, I started to see just how amazing some of life’s simple pleasures can be when you’ve been deprived of them for a while.

Now I am not saying I will be jumping for the joy at the sight of a shower for the rest of my life – although I do really like a good shower. But, I know that first proper shower is just one of many ‘firsts’ I get to enjoy now that treatment is coming to an end. It may sound strange, but I feel blessed in many ways that have the opportunity to rediscover certain aspects of life that I just assumed I’d take for granted forever.

So here’s my post-cancer list of ten things I cannot wait to experience once more!

The first shampoo: None of this scalp massaging stuff with a bar of hard soap, I am talking a proper lather on proper hair, which needs a lot of washing out! Showers are just too short at the moment and I have nowhere to put my conditioner!

The first brush: When I had hair so long I could sit on it (admittedly only if I leaned my head back), I used to love having other people brush my hair (this was a long time ago). Apparently, 100 strokes make it lovely and glossy (and maybe a bit greasy from all that brushing). There is nothing quite like the feeling of a brush gliding through your hair (or not if your hair is in knots). I love it and I miss it. In fact, the only thing I don’t miss is having to carry one around. Rumour has it my hair may grow back thicker. I am certainly hoping not as it ressembled rope before it fell out.

The first haircut: Ok, bear with me, these aren’t all hair related. Oh, how wonderful it will be to sink into the hairdresser’s chair and ask for someone to actually style my fluff! I will take a lifetime of ‘bed hair’ moments just to be able to look in the mirror and have a say in what is going on up top! It seems my ‘bob’ cut of the last four years is out if your emails and messages are anything to go by!

The first swim: This won’t just be any swim. When I get the all clear from my radio treatment (they suggest about six weeks from the last blast to make sure your skin doesn’t have a reaction to the chemicals in the pool), I will be dipping a toe into the Olympic pool. I think my days in open water might be numbered, but I can’t wait to feel my arms move through the water. It will be another tick on the Brighter Life List too!

The first period: Not something I thought would ever make it onto a list of things I actually want to see, but when you haven’t had one since March and, having one means you are not condemned to an eternal menopause (trust me, you wouldn’t want that), it will actually be a great day ‘if’ or ‘when’ it arrives. Sadly, this is the only thing I know may never return. I’d like to think I’d be more prepared for this first period than the last (was very young and walking round Avebury with my family so not great timing). But, I guess it will be as unexpected.

The first appointment-free month: Having spent the best part of the last month in hospital, I must confess, I am a little over appointments. I have three check-ups scheduled for October (including a trip to the hip surgeon and a discussion about nipples, which should be interesting), so am thinking November could be my month. My diary will look empty for once!

The first day you no longer look like a cancer patient: While I do find the ‘leaving the house’ routine easy at the moment, it would be wonderful to sit on a train and not see pity/sympathy/empathy/sadness/[insert appropriate emotion here] in the eyes of fellow passengers. Even in London, I don’t feel I have as many opportunities to blend in to the background at will. I’m happy, but that isn’t something you can announce to passengers daily, so they smile along rather than assuming my life is falling apart. Also, cancer is cruel in that you often look worse when the treatment is over – just at the time everyone just wants things to get back to normal. I’d like to look in the mirror to apply cream, not have a reminder of the last nine months.

The first mascara-wearing day: Now, I am not a great wearer of make-up as readers of this blog will no doubt know. But, I love mascara. Midnight blue is my favourite and I do often feel a bit naked without it (of course, that was before I discovered how naked you feel without eyelashes). I don’t change it as often as they say, but I might just treat myself to a new one when the lashes start to come back. Here’s hoping that isn’t too long!

The first proper lie-in: those menopausal symptoms are persistent. So much so that the hot flushes (combined with peripheral neuropathy from Tax) still mean bed is not something to be treasured just yet. The more I sleep, the worse the neuropathy is. Providing Tamoxifen doesn’t keep those menopausal symptoms going for the next decade (and providing my nerve endings start to play ball once more) I’d like to think might get a lie-in sometime before Christmas!

The first drug-free day: Given I am still on Clonidine and will be by the time the Tamoxifen starts, this day is a long way off. I will be 42 (at the earliest if we take a baby break in five years or so), so that is a good ten years of pill popping to go. But, what a day that will be! I won’t be wishing my life away just yet, but I will be happy giving my body a break from all things toxic. Maybe though it will be like dying your hair. It will be so long since my body has experienced a life without pills, it won’t know what normal really is any more. Here’s hoping coming off it doesn’t mean I go straight into a natural menopause!

Yes, the future may be filled with uncertainty. Yes, it will take me a long time to trust my body again – although I still believe it wanted me to find that lump on Christmas Eve before it was too late. But, whatever big things await me, I can be certain of one thing – there are plenty of little things that will keep me from thinking about it.

Now, the question is, what ‘first’ will come first? I am betting on the shampoo!

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Breast cancer lesson 151: Smile and the world will smile with you

On By Jackie ScullyIn Brighter Life List, Reflections on cancerLeave a comment

As I made my way to the Royal Albert Hall last night to tick off yet another challenge on my Brighter Life List, I started thinking not about just how lucky I am to be reaching the finish line, but about all the people that are about to get started.

It is a cruel fact of life that as one of us walks out of those hospital doors occupied with thoughts of a new normal, someone is walking in. I guess that’s why those doors are revolving!

I was reminded of this fact not because I was about to enjoy a rare evening out, but because I had been fiddling with my travelcard wallet. I appreciate it’s not usually an object to inspire such thinking, but this wallet is no ordinary wallet. Tucked inside are quotes and messages sent to me over the years by my amazing dad. He always knows how to make me smile even though he is miles away. Aside from the occasional loaded highlighter markings that accompanied my bank statements when he used to send them to me at university, I have treasured each one of my dad’s clippings and motivational post-it notes.

So, I’d like to share one with you today. It’s not profound. It’s not Booker Prize prose. It looks like a tatty scrap of paper because it has been travelling with me for years. But it makes me smile every time I read it.

This is for everyone facing up to challenges in their life – cancer or no cancer. Life is hard and, smiling when you’re faced with the biggest challenges it can throw at you makes it even harder. But, life can also be beautiful too.

‘Smiling is infectious, you catch it like the flu,
When someone smiled at me today, I started smiling too.
I passed around the corner and someone saw my grin,
When he smiled, I realised I’d passed it on to him.
I thought about that smile then I realised its worth –
A single smile just like mine could travel round the earth.
So, if you feel a smile begin, don’t leave it undetected,
Let’s start an epidemic quick, and get the world infected.’

Now that’s one epidemic of which I want to be a part!

I have been reading a bit of the Dalai Lama of late in my attempt to find out more about theories of happiness. I love what he says about suffering and the fact that, if we spend our lives trying to find ways to remove it, we will be hit harder when it finds its way in. Because guaranteed, it will always find its way in. He believes that if we accept the inevitability of human suffering, we will be happier. I do believe that, and I also believe that happiness and suffering do not sit at either end of life’s colourful and challenging spectrum.

Whatever you are facing, think not of the day the suffering will end, but of all the ways you can smile your way through it today. It often feels hard to find happiness, but trust me, there is more than enough of it to go around!

I’m smiling, and I have a date with a linear accelerator (only three left to go)!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

In truth, nothing will ever taste the same again.

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

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

On By Jackie ScullyIn Radiotherapy, Reflections on cancer2 Comments

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

On By Jackie ScullyIn Reflections on cancer2 Comments

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

On By Jackie ScullyIn Baking, Charity, Chemotherapy, Happiness, Pink hearts, Reflections on cancerLeave a comment

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 91: Be kind. Everyone you meet is fighting a hard battle

On By Jackie ScullyIn Chemotherapy, Happiness, Reflections on cancer4 Comments

Bearing my soul to all who know me – and quite a few who don’t – has brought with it some rather unexpected and surprising moments. Fellow sufferers have found comfort in a friendly face. Strangers have become friends. Old friends have become new friends. Distant friends have become closer friends. Family have become more like friends.

Every comment, post and email has meant the world to me. But there are a few that have shown me just how little we really know about those around us – and the challenges we all face. From miscarriages, grief, illness and tumours to difficult pregnancies, IVF, house issues and family troubles. You name it, they’re all there, on a doorstep near you (and maybe even on your own).

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I feel so privileged and moved that people have been able to reach out to me at this time and share the sadness that occupies their waking hours and disturbs their sleep. But, I also feel sad that had I known about some of them earlier, I might have been able to make a difference at a time when they needed me perhaps more than they do right now (a hairless cancer fighter is probably not first in line for the trenches!).

People often describe cancer as the invisible illness. And, in many ways it is (especially when it grows silently inside you at a time when you are feeling really well). But, the thing about cancer is that you don’t need to understand the complexities of a diagnosis to know that someone is fighting for their life. Cancer comes with its own support network. People get it. And that makes it so much easier to share with the world. Sadly, other challenges (each one difficult and hard in their own right) cannot be softened by such a public airing. 

So this is my little way of saying spare a thought today for all of life’s fighters. I can guarantee they are closer than you think.

Quick PS: As a rather more light-hearted aside, I confess to having bought some shorts. Apologies now if the weather takes a turn for the worse. But, if it is any consolation, they are really nice shorts and Duncan will permit me to wear them further than the garden, which is a first!

Breast cancer lesson number 87: The answers to those burning questions are closer than you think

On By Jackie ScullyIn Breast reconstruction surgery, Charity, Chemotherapy, Fertility, Reflections on cancer1 Comment

How often have you walked out of a consulting room partly reassured by all the questions answered and also partly plagued by the one or two things you just forgot to ask? By this, I don’t mean (if you’re anything like me) the questions you’ve diligently noted down in order to quiz any unsuspecting consultant? No, by this I mean the bigger picture questions that keep you awake at night or creep up on you when you least expect. In cancer land, that is a question like: ‘How long do you think the cancer was in my body before I found the lump?’ Questions that have no real bearing on the treatment plan in front of you, but questions that are no less important or interesting.

Since diagnosis day, I have been making a note of ‘random questions I wish I’d asked’ for a blog post at the end of active treatment. Currently on the list (in addition to the above) is ‘what do you actually do with the cancer you extract?’ Is there a cancer bin? Is it incinerated? Or, can they store it and retest it should there be developments in science? I know it sounds strange and I would guess the answer is incineration otherwise they’d have to take out extra storage space. But, it’s just one of those questions that for someone only recently inducted in to the world of cancer and unacquainted with the inner workings of hospitals actually finds rather interesting.

There is one question, however, that I have wanted to know the answer to ever since I came round from general anaesthetic number two after my egg harvesting.

And, on Saturday at Younger Women Together I got my answer. Younger Women Together is a fabulous and free two-day event held by Breast Cancer Care for women aged between 20 and 45 who have been diagnosed with primary breast cancer. Not only is it a great opportunity to meet and share experiences with other women in a similar position (none of which I have managed to spot in my own hospital), but it is also – with its expert speakers and workshops – the perfect environment within which to ask a few of those burning questions. I couldn’t recommend it highly enough to young women who are grappling with a diagnosis, undergoing treatment or trying to find their ‘new normal’ in the years that follow. I left inspired, moved and supported. And with my answer!

Starting with ‘the question’ here are a few things I am glad (and thankful) I now know (apologies in advance if I get any of the detail wrong, just passing on what I scribbled down):

Fertility question: If I am rendered infertile as a result of treatment, am I still able to carry the embryos frozen as part of my fertility preservation before chemo?
Answer: Yes! It may involve a few drugs, but just because your body has stopped producing eggs, it doesn’t mean you can’t carry one you’ve already harvested. Great news.

Fertility question: Can you test your fertility status before going onto Tamoxifen?
Answer: With difficulty if you are recovering from chemo and on Zoladex. It is possible to test for fertility using blood samples (for your hormonal profile) or scanning, but drugs can interfere with the results until your body is back to normal. Testing on Tamoxifen is also not advised due to the fact it stimulates oestrogen receptors in the uterus, while reducing oestrogen levels elsewhere and can cause temporary loss of or irregular periods, so may also give misleading results.

Fertility question: Can you predict the chances of someone losing their fertility during chemo?
Answer: The chances depend very much of the drugs used in the chemo regime. Alkylating agents (such as the C in FEC) are considered more problematic. Having said that, the C when used in the CMF regime seems to cause more problems than when it is used in the FEC regime. The Tax regime is less concerning. Statistics suggest women under 30 have a 5% risk of losing their fertility compared with a 50% for those between 36 and 40. I am somewhere in the middle! Age, drugs, dosage and a woman’s ovarian reserve (before treatment) help doctors predict an individual’s chances.

Fertility question: If you get pregnant after a cancer diagnosis, should you expect to be treated differently?
Answer: The short answer is yes. Chemotherapy can cause possible cardiac issues, which may not present themselves until pregnancy when the heart is working harder. This means echocardiography and closer monitoring is probably advised. There is a small increased risk of complications at delivery and a 30% increase in the C-section rate (although it is not known whether women are choosing this option as a way of taking more control). Where breasts have been reconstructed, pregnant women may wish to wear a prosthesis if the unaffected breast grows and leaves the woman feeling lopsided!

And a few ‘Did you knows?’:

1)    According to the latest statistics, 537 women between the age of 30 and 34 get breast cancer in the UK every year. That is compared with 2,899 women between the ages of 40 and 44.

2)    Even with a mastectomy, there is usually some breast tissue left behind in the affected breast.

3)    A new report just out has suggested that Phytoestrogens (basically oestrogen-like chemicals found in plant foods such as seeds, beans and grains) can reduce the risk of cancer.

4)    Omega 3 can help with joint inflammation and chemo brain (or memory issues)!

5)    Valerian can help with sleep problems while on chemo.

6)    Figs contain calcium

7)    And, wise words from speaker and fellow cancer survivor Kelly Short: ‘Don’t think about yesterday, you were a different person then.’

8)    www.insurancewith.com is a useful insurance provider for those looking to travel with a cancer diagnosis.

There was also plenty of exercise-related material I will save for another day. As you can probably tell these two days have enhanced my life – and my understanding of the illness I now face. If you’re a young women with a breast cancer diagnosis, I would urge you to book on today for a strong dose of inspiration, motivation and practical advice. Click here to find out more.

And, if you have a burning question that you really want answering, why not post it here (as long as it is not ‘what is the meaning of life?’). Someone out there might know the answer, or, if it’s cancer related, I might just be able to add it to my list once I have summoned up the courage to find out which bin my cancer landed in!

NB: There is a whole other side to the event that I feel it would be wrong to touch on in a blog and that’s the amazing and wonderful women who sat alongside me over those two days. How amazing it was to sit among women who didn’t know the me with hair, who understood what it was like to spend a night awake with nothing but a hot flush for company, knew how to navigate the terminology and side effects that come with the words breast cancer and understood the importance of a smile. Less a support group and more a practical and lively forum for sharing experiences. I feel privileged to have met these amazing women.

Breast cancer lesson number 84: You’re a person, not a hospital number

On By Jackie ScullyIn Chemotherapy, Reflections on cancer2 Comments

There are so many things I love about the NHS. There is, however, one thing I don’t. It’s the administration. Why do I have to be the one to join the dots? Why is it that when there are plenty of other things for me to worry about, is it the one thing filling up my thoughts by night and my mobile minutes by day. The NHS is made up of wonderful hard-working people who really care. It’s just such a shame the systems connecting those people together don’t.

Today’s administrative conundrum reduced me to tears. Here’s why:

1)    Three weeks ago, my oncologist in the Monday clinic took the decision that, having coped so well with the first round of chemo, I could be referred to a nurse-led programme for the remainder of my treatment. I happily agreed and was booked in for an appointment on Wednesday 7 May. Tick.

2)    At my second chemo session on 23 April, the receptionist informed me that I couldn’t attend the clinic on a Wednesday if I am to keep my three-week Wednesday cycles. Wednesday 7 May is a week before round three and therefore too early for blood tests. She suggested I call the breast care nurses to schedule an appointment at the Monday clinic again. Made sense to me!

3)    The breast care nurses were lovely as ever and confirmed that a Monday clinic appointment was needed and, a few days later, a letter arrived through the post. They cancelled my nurse-led appointment. Tick.

4)    Yesterday (Wednesday 7 May) I received a call querying why I wasn’t at the hospital for my nurse-led appointment. I explained the situation and the fact that I was led to believe the appointment had been cancelled. The lady informed me that I no longer qualified for the Monday clinic (I guess because I am a relatively well sick person) and that this appointment would need to be cancelled. Instead I would need to attend the Wednesday 14 May clinic at 10am and then have my chemo at 11am the same day. I agreed.

5)    Once the call had ended, I felt a bit concerned about the timings. Usually a blood test should happen about two hours before chemo so that the results can be processed and the chemo drugs prepared. As a result, I decided to double-check the timings at my PICC line dressing change appointment this morning.

6)    The receptionist confirmed that my Monday appointment had been cancelled, but that the nurse-led appointment was 11am (not 10am) and therefore at the same time as chemo. She added that I am not supposed to have the two on the same day (had I not queried it, I imagine my chemo would have been cancelled when I turned up next week). Wednesday clinic means Friday chemo. She confirmed that my chemo would now have to be moved, at which point the tears started to flow.

7)    After a few more calls, the receptionist confirmed that I would need to come to hospital on Wednesday for blood tests and to see the nurse. I would then (providing the test results were positive) need to return on the Thursday for the drugs. From chemo four onwards, I would need to attend the Wednesday clinic with Friday chemo. Happy Friday to me!

In chemo land, two days is a long time. By nudging my chemo to the end of the week, three months of careful planning (weddings, parties, training, holidays, train trips) were thrown into question in the space of half an hour. I am determined to make every single event. I just wish I didn’t have to dig deep (and maybe even pack a my old washing-up bowl) to do so!

I get it. Put the well people on the Friday list so they won’t clog up A&E on a Saturday. I don’t mind being a well person (the alternative is not particularly attractive). It’s just not great to feel that no one really wants to see you and that I am being shuffled around the system to make room for everyone else. I need someone to help me control the vomiting. I want to discuss my ice-cream headaches and my taste problems. I need my next Zoladex prescription. Plus, my diary is just one big mess of scribbled out appointments and I like tidy pages. Even my appointment card has tip-ex on it!

I have a voicemail message on my phone. I think there’s an apology coming. I just wish I didn’t have to let the tears flow to get it – and a proper appointment.

This cancer stuff is hard enough without having to worry about getting a seat at the clinic (or a chemo chair). I’m a person (and a very accommodating one at that), not a hospital number in the system. Dear NHS, please don’t forget me.

NB: as an amusing aside, I met someone for lunch today who I hadn’t seen for years. I was out in Suzie (he didn’t know, so I thought it only fair to act normal). What was the first thing he said to me? ‘Wow, you’ve changed your hair since we last met.’ He will never know why this one sentence made me smile so much. Suzie is obviously pretty convincing! 

Breast cancer lesson number 76: Why being healthy doesn’t automatically make you happy… and why it should

On By Jackie ScullyIn Chemotherapy, Happiness, Reflections on cancer4 Comments

Back in September 2007, when a surgeon decided to saw my pelvis in three and reshape my hip socket, I vowed I would never take walking for granted again. I renewed that vow when, in December of that year, I was stood in my parent’s kitchen with no crutches trying to remember how to put one foot in front of the other (it was surprisingly hard). I thought that being able to walk without pain would somehow make me ecstatically happy. The truth is, beyond the odd twinge and few bad shoe decisions, I haven’t really thought about walking (let alone felt happy about it) for the last five years.

Will I be noticeably happier when my current health problems are tucked away in another of life’s closed chapters? Experience tells me I won’t. Of course, I’ll have hair, an immune system, a nipple and maybe some nicely manicured nails. But, when the badge of good health is stamped on my medical records (or I just get a nice letter telling me to come back in a year), I will probably do what every other human being on this planet does ­– I’ll just find something else to worry out.

Good health, when you’ve got it, doesn’t buy you happiness. That’s because, when you’re healthy, you don’t really think about it. When was the last time you randomly thanked your pancreas for working and your heart for beating or stroked your feet because they got you to the bus on time? The sad fact is, when our bodies work, we take them for granted, punish them and expect them to keep going. We don’t think about them until they go wrong. And when they do, we find it hard to think about anything else.

Of course, while being healthy doesn’t guarantee us a space on cloud nine, the subject is not quite so straightforward. When you feel good, you have the strength to chase dreams and seek out things that can bring happiness. And in the same way, when health problems strike, unhappiness can spread like a disease. Happiness and health are linked, but not in the way you might expect.

Just being healthy might not be enough to make most humans happy, but there are so many reasons why it should. I can’t say that I won’t take my health for granted again when the scars have faded and I can taste food once more, because I know I will. I am only human after all. So, I want to take this moment to thank my body for putting up a good fight when obstacles are thrown in its path. Having seen a lot of people less fortunate than myself over the last few months, I am grateful that I can sleep without pain, walk to the shops without collapsing and go home at the end of my treatments. I am lucky that I can enjoy a sunset, listen to birds in the garden and smell the dinner cooking in the oven. Right now, the thought of all that good health brings, is making me very happy indeed.

So today, raise a glass (of water) to good health. Let it buy you a moment of happiness. If you have it, grab it, hold it tight and don’t let it go. You never know when you might lose it. And, if you don’t, I pray that one day you will find it again.