Tag: cancer

Breast cancer lesson 176: a cancer diagnosis brings clouds, but it doesn’t have to block out the sun

On By Jackie ScullyIn Baking, Chemotherapy, Moving forward, Reflections on cancer3 Comments

There is something quite sobering about reading back over my diary from last year (I only write a line a day but, in some cases, that’s enough to conjure up some pretty strong images) and reflecting on the entry for 21 February 2014.

Sitting down to write last night’s entry (I cooked for friends, so it was more about wine and a cake that accidentally resembled a boob than it was morphine and NHS mash) I knew it would be a world away from this: ‘Short in terms of length, but long in terms of getting the cancer cut out of me. Boob off, tummy out, boob on. Humour can get you through a lot.’ (Ok, slightly more than a line, but you get the picture.)

You could say it was the most memorable day of 2014. But, with the quantities of general anaesthetic involved, it was also among the most forgettable. One year on, I think of it as the day I lost a boob and found myself, the day that reminded me of just how fragile we humans are and a day that taught me that life is too short to spend it among the clouds, when there is blue sky all around.

The cloud metaphor for me is a strong one and one that I saw neatly captured on a mindfulness animation the other day (I am doing a mindfulness course currently, but that’s a whole other story). Imagine a bright, clear blue sky, a sky that is calm and uplifting (sounds like a good sky to me). Then imagine that sky filling with clouds (of the light and fluffy and grey and stormy kind). These clouds represent our thoughts, helping to block out the blue sky with imaginings that are often far worse than the reality that follows. The secret in life is to remember that thoughts are just clouds. They drift in and out, they don’t last forever and, while you may look at them and see them as colouring your day, your mind can (just like a plane climbing through the sky) break through that blanket of grey and find the blue sky again (it’s always there, but our thoughts often make it harder to find). A cancer diagnosis will always bring with clouds, but it doesn’t gave to spell a change in the weather.

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It’s hard not to see the blue sky when you’re celebrating a year being cancer-free! How to mark such a significant first anniversary? With another first of course. This time in the form of my first haircut since the pre-chemo pixie. Goodbye natural but Frodo-like locks and hello beginnings of something I might one day refer to as a style.

This is where is was before the chop:

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And this is the ultimate aim:

AFI FEST 2011 Presented By Audi - "My Week With Marilyn" Special Screening - Red Carpet

Bit more hair, bit less forehead required!

The experience itself was lovely. Conditioner (my hair rarely needs washing let alone conditioning now), a hair brush being passed through my short little locks and the feeling of someone else taking charge of my wild look was a real treat.

But that’s not all. Friday was dinner and laughs with a great friend (something I am doing more of now after reconnecting with lots of people last year). And, Saturday was a day in the kitchen surrounded by proving bread, homemade pesto and a white chocolate bombe.

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These last few days have been a celebration of the things I love to do, my way of thanking my body for surviving eight hours on the slab and coming out smiling – and thanking some of those around me for coming along for the ride. And the great thing is, my stomach is flat enough to not feel guilty about having a second slice of cake for dessert.

So, whatever you’re doing today, I invite you to look for the blue sky (difficult in the UK, I know). Acknowledge those clouds, but acknowledge that they don’t have to define a day, but can actually make the blue sky even more vibrant.

Breast cancer lesson 165: Why loving the stars has made me less fearful of the night

On By Jackie ScullyIn Diagnosis and treatment planning, Moving forward, Reflections on cancer5 Comments

On 16 January, before the cloud of cancer cast its shadow on my life, I didn’t know a single person who was dying. Now, I could give you a list.

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Over the last ten months, while being chemically transformed into a cancer-repelling machine, I have lost new friends, new inspirations, acquaintances and amazing people with which I have shared a bit of Facebook banter. I got my life back, but, in so doing, I have seen just how easily it can be taken away.

For someone with a primary diagnosis, I haven’t really spent much time thinking about the prospect of this disease bringing my own life to an abrupt end (although I did have an amusing – if morbid – hypothetical chat with Duncan about the rigorous screening process I would implement if the end was in sight and finding another lady was on the agenda).

But, what I didn’t consider after being diagnosed was just how much time I would now spend thinking about other people who have lost their lives. Every time I hear that cancer has systematically destroyed another family’s world, I think about just how cruel and unforgiving this disease really is and just how many people are affected by it. At the moment it feels like my heart is being stamped on about once a fortnight, which is stark reminder of how fragile our lives really are.

Breast cancer is a killer. And, for young women, a pretty ruthless one at that. According to Cancer Research UK, 32% of all cancer deaths in women between 25-49 are due to breast cancer. I have heard people on more than one occasion say that breast cancer is: ‘the best cancer to get’. Truth is, the only good thing about cancer, is not getting it in the first place. Get it young and the chances of it being aggressive are high.

This post blog, however, is not meant to be sad. While I wish with all my heart the scientists could find a cure for cancer, some astonishing people have filled my thoughts, my house and my inbox this year. It’s awful that it was cancer that brought us together, but I couldn’t now imagine my life without the imprint they’ve made on it. There are some truly amazing people in this world. You may not always see them as you rush from day to day, trying to complete that to-do list. But they’re there and, I guarantee they’re fighting hard every day.

These women have taught me that if I’m not having fun, I’m doing something wrong. They have inspired me to greet each day with a smile. They have inspired me to race through my brighter life list (last week’s sausage roll making fest being my last achievement). They have inspired me to say what I mean to the people I love and admire, while they are still around to hear it. They have inspired me to be a better person in all that I say and do. And, for that, I will be forever grateful.

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So tonight, as you tuck into some wine or mug of cocoa, I want you to raise a glass to all those beautiful people who have touched your life and made you who you are even though they may no longer be a part of it. Life is so short and so precious too.

We owe it to all those whose lives have been taken, to make the very best of every day.

NB: If you are reading this and have not checked your boobs in the last month, they please ‘Cop a feel’. If not for me, then for this stunning woman Kris (Boob chief at CoppaFeel), who I feel humbled and privileged to have met

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

On By Jackie ScullyIn Moving forward, Reflections on cancer7 Comments

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

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

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

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

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

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

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

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

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

Wish me luck!

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

On By Jackie ScullyIn Moving forward, Reflections on cancer3 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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

Breast cancer lesson 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 131: Why some risks are worth taking

On By Jackie ScullyIn Chemotherapy2 Comments

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

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

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

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

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

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

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

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

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

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

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

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

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 107: Cherish those who hold you up!

On By Jackie ScullyIn Charity, Chemotherapy, Happiness2 Comments

You could be forgiven for thinking that someone with chemically-induced pains, thinning eyebrows and no tastebuds, has every reason to not feel happy – let alone lucky. But right now, sitting here on the sofa I feel like one of the luckiest people alive. That’s got nothing to do with the fact I am far from a bar showing the hotly-anticipated England World Cup game tonight and everything to do with the fact I have spent the day being reminded of just how beautiful this little world of ours really can be.

Ok, so it wasn’t your average supermarket shopping and washing Saturday. I was actually at a CoppaFeel training day for The Boobettes. As those of you who’ve read lesson 104 (click here for a recap) will know, I have started volunteering for charity CoppaFeel to help amazing founder Kris Hallenga (who is living with advanced breast cancer herself) and her small-but-perfectly-formed team in their mission to wipe out the late detection of breast cancer. Today was my official induction and I have to say, I haven’t stopped smiling.

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I thought I’d learn a lot. And I did, which was fantastic. But, what I didn’t anticipate was just how inspired and moved I would be by everyone I met. From mothers and teachers to singers, knitters and writers, this was a meeting of driven, passionate and beautiful people all united by one common cause, and I felt so humbled to be in their company. I came away thinking I would never have met these people if I had never been diagnosed (I am just not cool enough it has to be said). But, I am so so glad I did. Cancer hadn’t made these people beautiful. They were already that way.

As a quick aside, we were asked to name our boobs at the beginning as a way of breaking the ice. Mine are called cupcake (left) and muffin (right). The reason? Well, I love cake, I love baking, I feel my new right boobie is made up of all the amazing cake and chocolate gifts donated to me before surgery and the right continues to outgrow the left due to it remembering its origin (hence the difference in baked products). Just don’t ask me for the recipe! 

My great day didn’t end there. I drove home via a close friend’s birthday and seeing her face as I arrived at the table made me realise just how important it is to make the effort for the people you love. I couldn’t drink, I couldn’t enjoy the pizza or the homemade cakes prepared by her kind friends, but I could enjoy the company (most of which was people I’d never met who welcomed me immediately and didn’t say a word about my funny hat or the tube poking out of my arm) the chat (theatre, cake, more theatre, schools today) and a hug with my wonderful friend.

But, my great day didn’t end there. If we skip over the injection (which I deliberately took before my food so as to treat myself immediately afterwards), I got home to find a beautiful surprise on my doormat. Back at Breast Cancer Care’s Younger Women Together event in May (click here for lesson 87) we were asked to write a postcard to ourselves that would be posted to us after the event. While I found the whole event inspiring, I didn’t write about my experience but about the words of a beautiful young mother I met, who told me a great story about reading to her child throughout treatment. She often read the story We’re all going on a bear hunt and told me the words took on a whole new meaning for her. She said: ‘Cancer is like a bear hunt. You can’t go round it, you can’t go over it, you’ve got to go through it.’ I wrote this down and added: ‘So keep going’. I knew there would be tough times ahead when I wrote it and I thought it would make me smile. It actually did more than that. It reminded me of yet another wonderful and kind person introduced into my life because of this life-changing disease.

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But, my great day didn’t even end there. While making myself dinner I noticed a tupperware box filled with ginger biscotti that a friend had made and sent via Duncan. I am now munching my way through the tub and am delighted to report that I can actually taste them – and they taste wonderful. This box didn’t make me smile because it was filled with tasty goodies (although that certainly helped). This box made me smile because it reminded me that not only have I met beautiful strangers along the way, but people I already knew to be beautiful have become even more so (even though I thought that wasn’t possible). I never thought I would cry over a well-baked biscuit. But I just did!

But, my great day didn’t even end there. I check my phone and find on it a brilliant message from my sister-in-law about a book she had just picked up for her son. It’s called The Okay Book and it’s packed with great messages such as: ‘it’s ok to try new things’ and, amazingly, ‘it’s ok to have no hair’. I couldn’t agree more and I continue to smile at the thoughtfulness of this lovely lady.

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As a self-confessed perfectionist often on a mission to help others, I think I have spent too much time trying to be the best I can be and not enough appreciating just how amazing those around me really are. I feel truly humbled by old, new and hopefully soon-to-be friends (you know who you are)!

So, to all of those people who go out of their way to be kind, thoughtful, generous and basically amazing on a daily basis, I want to say thank you for being you.

I’ve had a wonderful day just by being reminded of how many of you there are!

Breast cancer lesson number 103: Tax by name, taxing by nature

On By Jackie ScullyIn Chemotherapy3 Comments

Chemo drug Docetaxel (which sounds more like a dinosaur than a toxic infusion) certainly lives up to its more commonly used name ‘Tax’. The side effects appear deliberately complicated, just the mention of it makes most people go a bit pale and the administration of it usually brings about pain. Whether you’re paying it, or receiving it intravenously, tax is no fun.

It started so well – although I think this had more to do with the extra helpings of steroids, which did give me the feeling I could take on the world (or at least the kitchen floor)! There was no nausea (thank you Emend). And, for the first 48 hours I had little more than mini bouts of fatigue, disturbed sleep, hot flushes and a general sense of unease. I had started to think we were going to get on.

Then, at around 4pm yesterday afternoon, the picture changed. All of a sudden, I went from Duracell bunny to flat battery. I lost my taste in the space of about half an hour. I ate early, was in my pyjamas by 6pm and drifted through the last Harry Potter film before making it to bed at a less-than-respectable 8.30pm. I had my first bone pain inducing injection. I wrestled with the bedding, got hot, got cold, got stiff, got up and eventually rolled out of bed when I couldn’t think of anything else to do to get comfy.

Six hours on and I am still trying to work out exactly how I feel. Strangely, it’s like my limbs feel heavy, but my body feels empty. I’m finding it hard to focus and everything from my back and my boobs to my sternum hurts a little bit – like someone is slowly tightening a band around me. I’d like to say I was having a nice time sat here in the garden with the light breeze on my neck. But, it’s not particularly fun.

And, the worst part is, I’m not sure what’s round the corner. I know there are another seven injections to come in this round and that injections mean pain. I know the steroids are over so there is nothing to help me with the housework or the cooking (when my lovely mum heads home). And, I now think I know what chronic fatigue is really all about – and I really wish I didn’t.

I’ve been warned that this drug is tough. All I’m hoping is that I am just that little bit tougher!

I think it’s going to be a long week!