Month: October 2014

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 162: Why it’s hard not to laugh in a nipple consultation

On By Jackie ScullyIn Breast reconstruction surgery, Reflections on cancerLeave a comment

The trouble with attending a hospital appointment on your own (don’t worry, I am not throwing caution to the wind after lesson number one, these are very routine appointments), is that you have no one to cover you if you need to pop to the loo. That’s why, I spent the best part of my 90-minute wait on Monday working out the best time to take the chance – only to realise it takes less than a minute to get back in the waiting room if you’re focused.

The reason for this latest waiting room visit was to meet the plastic surgeon and discuss reconstruction phase two. Phase two is, of course, the ‘return of the nipple’, if we see phase one as ‘destruction of the boob’. That was my understanding of the meeting anyway, so I was amused when the registrar took one look at me and asked me how the chemo was going! And I thought I actually had a bit of hair.

Now we are onto the cosmetic side of the job, I am finding it hard to treat the whole thing as surgery. I diligently took my top off on demand and smiled as we went through the usual: ‘we can tidy it up of you’d like to look even on both sides’. My stock reply tends to be: ‘I am very happy with my set (asymmetrical as they are) and I wouldn’t consider another general anaesthetic at this stage. Plus, the right one will grow and shrink as my weight fluctuates, so I will always be pretty lopsided.’ It is very kind that plastic surgeons don’t want me to be wonky, but I am just happy to be here – imperfections and all! Trust me, if they fix the boobs, their perfection would just look out of place.

I did consider stopping without a nipple given I am happy with my fleshy mound. But, I feel like the journey won’t be complete without finishing it off. It will be a permanent ‘outie’, so I think it will be padded bras all the way after surgery. It will also be tattooed so that it matches the left side.

Today was quite interesting in terms of reconstruction options. It seems there are two ways to reconstruct the nipple (or should I say we only discussed two). The first is a local flap, created using existing skin attached to the reconstructed breast. The only downside it seems is the fact that it would leave a little scarring to the sides of the nipple, but this would be covered up by the final tattooing stage of the process, Yes, I didn’t think it was enough to get radiotherapy tattoos. Now I want to tattoo my boob.

The second option is to remove skin from another area of the body to create the ‘protrusion’ (sounds a bit scientific for a boobie). The downside to this procedure is the fact that there would be two wound sites and the fact the grafted skin may not take to its new home.

For me, this didn’t feel like decision that would be hard to make. I have opted for the local flap and will take the extra scarring! I don’t fancy carving up any other body part for an extra bit of skin. It is already part belly. It certainly doesn’t need to be part anything else.

So, in six months time (you have to wait for the boob to settle after radiotherapy), I will, at last, complete my reconstruction. It’s a local anaesthetic. It’s a quick procedure. And I would bet money on it being one of the strangest experiences of my entire life. (I must admit, the consultation was pretty funny, with the highlight being the young doctor poking my boob with this finger to point out the position of the nipple. I kept thinking to myself, I haven’t been nippleless that long!)

It certainly is amazing to see what these plastic surgeons can do. I just never thought they’d be doing them to me!

NB: In other news, as part of Breast Cancer Care’s #hiddeneffects campaign for Breast Cancer Awareness month I put together a piece on smiling through cancer. Click here if you’d like to have a read.

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

On By Jackie ScullyIn Reflections on cancer1 Comment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Breast cancer lesson 160: Welcome in the next decade with a glass of water and a Tamoxifen tablet

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

I find it mildly amusing that my first day back at work (after about four months away) should also be the day I am prescribed my hormone therapy tablet Tamoxifen. (It’s also the first day of Breast Cancer Awareness month, which is obviously an amazing thing with which I hope to be heavily involved for the rest of my life.)

For me, this October feels like my January, armed as I am with my freshly-organised work bags and clean notebook. I am more ready than ever to move forward, but I am now in possession of a packet of pills that, I hope very much, won’t pull me straight back. I guess I just hoped, for a few days at least, people might be more interested in what is going on inside my head – rather than growing out of it!

Of course, no office commute would be complete without that obligatory detour to the hospital. As some of you will remember, just over two weeks ago, I was sent on my merry way after radiotherapy with a list of potential side effects, advice to keep ‘creaming’ and a note of caution that, at some point in the very near future, I may hit some kind of cancer-related wall. I am delighted to report that the skin is happy, the tiredness is manageable and the wall is (currently) nowhere to be seen. It was, however, nice to speak to an oncologist today to get a little bit of reassurance that things are as good as can be and that, on the radiotherapy front at least, I did very well.

We did discuss the peripheral neuropathy and, as I feared, time is the only current healer on that score. Nerve damage can take years to disappear, and, given that I have only been chemo-free for two months, there is no current action to be taken. We also talked periods and menopausal symptoms. It seems that, because Zoladex interferes with the pituitary gland, it takes a while for the body to reactivate. If, at my follow-up appointment in three months, the ovaries are still asleep, they may do a simple blood test to assess my fertility levels. But, again, it seems time is the biggest factor here as well. Thank goodness I am trying to be more patient in this new post-cancer era.

Then, Tamoxifen had its moment. The oncologist explained that the hormone therapy (which blocks oestrogen to the breast tissue in pre-menopausal women) was another treatment designed to reduce the risk of the cancer coming back. We didn’t talk stats. He was straightforward in saying that, when it comes to breast cancer, it is the individual case that matters and they have no idea whether or not, in my particular case, the cancer will ever return. The only thing they know is that, because my cancer was oestrogen positive (basically fed by the stuff), Tamoxifen will help on the risk front. And, if it helps, I’m taking it!

Up until very recently, the standard course for hormone treatment was five years. Based on the results of a study (the findings for which are starting to filter through), however, the plan is to keep me on Tamoxifen for ten years. He did add though that, while beneficial to complete the term, we could have a debate after five years if my quality of life looks to be suffering as a result of the treatment. Let’s hope the next five years are kind so there is no need for a debate of any sort.

Whether or not Tamoxifen will bring with it any nasty side effects is yet to be seen (more menopausal symptoms, irregular periods, risk of blood clots, changes to the lining of the uterus are all on the list and there is even a risk of more cancer, but that risk is pretty low). There are, however, a few things I have learned that I think will be useful for others to hear too:

1) Because I shut my ovaries down using a Zoladex implant during chemo, my body currently doesn’t have normal levels of oestrogen in it. This means that, for a time, my body may not notice anything unusual with taking the drug. When my body starts to return to normal (and periods start), however, there is a chance the side effects may start (or get worse). That’s certainly something to look forward to.
2) In terms of the best time of day to take the pill, the official advice is simply ‘when you think you will remember it’. That means before bed for me.
3) Missing a day or two is not going to have a real impact on the overall effect of the drug.
4) There are certain foods and drugs that may affect enzymes in the liver (where Tamoxifen is metabolised), but as long as you aren’t doing anything extreme on a daily basis (such as consuming a litre of grapefruit juice a day) and are enjoying a healthy balanced diet, he didn’t seem to think there was any reason to cut things out completely. Always good to check, but I haven’t got a list of banned foods in my pocket and that is good enough for me.
5) On the subject of follow-ups, I will be seen again in three months to talk about the drug. All being well, I will then be put into a long-term follow-up clinic. No amount of medical software can predict the future, so it’s a case of watch, hope and live. Whether it will be mammogram or MRI scanning, is yet to be seen. He said, given my age, MRIs may be recommended, but only time (yes that magical thing again) will tell.

Breast Cancer Care has produced a really useful booklet on the subject, which is worth ordering if you’re keen to know more. It has a useful section, which talks about the different suppliers who make the drug and how the brands may affect you in terms of the side effects you experience.

Funnily enough, while I knew we’d talk about Tamoxifen today, I had no idea I would actually get a pack (in the case of clonidine, I had to go to the doctors to set up a repeat prescription first). I would be lying if I said I wasn’t a little nervous about taking it. The side effects can be brutal and, unlike all my other treatments, 10 years is a long while to feel uncomfortable. The only good thing? I feel like, by starting the course, I will be doing something every day to keep cancer at bay. That is certainly something worth smiling about.

So as you get into your PJs tonight, think of me with my brand new pill packet marking the start of my next decade.

Let’s hope it’s a good one!