Category: Reflections on cancer

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!

Breast cancer lesson 159: Choose to thrive not just ‘survive’ after breast cancer

On By Jackie ScullyIn Moving forward, Reflections on cancer9 Comments

Before swallowing a textbook on all things breast cancer, I thought that if you were treated successfully, you could be cured. I thought that at the end of my active treatment journey, I, too, would be another woman in ‘remission’. Like a lot of things in the English language, however, nothing is quite as simple as it first appears.

Truth is, while the headlines will talk of ‘cures’ and people being ‘all clear’, you are not likely to hear these terms in an oncologist’s office. To be cured means there is no way breast cancer will come back. Unlike some other cancers, breast cancer can come back at any time in the future. Yes, the risk of it returning does diminish over time and yes, I may be cured, but as there is absolutely no guarantee, it is not a word you will ever hear me use.

Remission is also a word that won’t me making an appearance in my post-treatment life. While associated with lots of cancers, it isn’t often applied to breast cancer. Instead, people tend to use the term NED, which is short for ‘no evidence of disease’. As someone who loves a good bit of evidence-based thinking, if the evidence isn’t there, I plan to live my life without a cancerous backdrop. I will pop a pill every day (when they prescribe it to me) for the next ten years and will remember just how far I’ve come and how lucky I am, but I won’t let it control me (let’s hope the side effects are kind). I do not fear the future. I say, bring it on!

People ask me, do I think it will come back? In all honesty, I have no idea. (I didn’t think I’d get it in the first place.) All I know is, if it does come back, it doesn’t mean the end of the story.

Some people may get a local recurrence, which means the cancer has returned to the chest/breast area of the affected side. Local recurrence is treatable.

Some people may get a regional recurrence, which means the cancer has spread past the breast and the armpit lymph nodes into tissues and other lymph nodes. Regional recurrence is treatable.

Some people may get a new primary diagnosis in the opposite breast. This would be treated as a new cancer, and is treatable.

Some people may get secondary cancer, which is when the breast cancer cells spread beyond the breast to a distant part of the body (such as bones, liver and lungs). Secondaries can be controlled and treated, but will never go away.

And, some people shut the door on cancer forever. Let’s hope I fall into this rather exciting category.

My plan? Be breast aware (I have signed up to CoppaFeel’s free monthly texts), exercise more (the link between exercise and cancer is indisputable), never reschedule a hospital appointment again (I moved my biopsy because I had a meeting) and squeeze out every last little drop of happiness from every day for the rest of my life. Then, if I ever have to hear those words again, I will be ready.

As I write this today, I am not just NED, however. Cancer has changed me – and I don’t just mean my hairstyle. So much so that I have established my own set of life guidelines, or commandments. These are the things I want to remember as life returns to its new version of normal. This may sound a little odd, but by posting them here, I hope I will always be reminded of the things that matter, when first world problems creep back in. Here goes:

1) Be true to myself – and be myself: We often spend a lot of time trying to disguise the things that make us who we are. Yes, I like the X Factor and cake and yes, I will probably never enjoy an intensely political debate, but that’s because I’m me, not someone else. I vow to celebrate my own likes and dislikes – and the preferences of others.

2) Run my own race: I must set the pace in my own life and compete only with myself.

3) Worry when it matters – and let it go: If I can do something to eliminate a problem, I will. If I can’t, worrying about it won’t make a difference. This is going to be tough.

4) Be present and enjoy the process: No more wishing my life away. Today is all we know we have. I want to enjoy it – and reflect on it.

5) Be patient: Sometimes the best course (and often the hardest course) of action is to let things happen and not force an issue. I vow to walk before I try to run.

6) Just do it (no excuses): I have a mug that says: ‘don’t put off to tomorrow something you can put off for life’. I am a master procrastinator at times and I want to make every moment count. Start the day with the hardest job and it will get easier. And, good and done is better than perfect and not done.

7) Put your oxygen mask on first: You are not qualified to help others unless you first help yourself. I promise to look after myself properly. That includes putting on more face cream!

8) Use it – and enjoy it: How many of your possessions are reserved for best? No more. I intend to make the most of what I own. Otherwise, why own it?

9) Live to give: I promise to be kind and be grateful.

10) Find a place for everything: You can be tidier if your belongings have a home that isn’t the kitchen table!

11) Fix it – identify that problem: No more generalising for me. If the skin is burnt, it doesn’t mean the meal is ruined (metaphorically speaking).

12) Do the right thing: Apply this filter to every decision and I believe I will be a better person.

13) Exercise restraint: I want to be strong enough to buy a bar of chocolate and eat only a few squares (provided I am not hungry of course).

14) Be reliable: I will keep my promises – and make more promises.

15) Be prepared: I won’t cook without an apron and bake in my running kit again!

16) Remember what’s important: What would I want my gravestone to say?

17) Be aware: You won’t know whether you need to lose a few pounds unless you weigh yourself.

18) See the brighter side: Think positive and the world will fall in line.

19) Think it through: I vow to weigh up a task based on how important it is and give it the time and energy it deserves. Less is often more.

20) Dare to dream, prepare to learn: I will take risks, safe in the knowledge that all I may get to take from them is a learning.

If you were given the chance to start again (I still liken chemo to rather odd form of rebirth), what would you resolve to do – or do differently?

I want to grow back as a better version of me and thrive in this next chapter. Now you know the inner workings of my mind, you can hold me to it!

Breast cancer lesson 158: Why I will be making room for cancer in my house – if not my life

On By Jackie ScullyIn Moving forward, Reflections on cancer3 Comments

In January, I made a mistake. I donated the dressing gown I wore in hospital when I had my hip op in 2007 to charity. I hadn’t really worn it since and, as far as I was concerned, I would probably never need it again. Frustrating then, that I had to buy a new one, just a few weeks later.

I confess I am a little superstitious. I don’t buy sunglasses in the summer months for fear of rain. I hunt for a second magpie if I only see one to avoid the sorrow and, while I do step on cracks in the pavement (this is London after all) and am a bit of a magnet for ladders, you won’t find me leaving anything to chance – particularly where cancer is concerned.

This does present me with a slight challenge. What to do with the radioactive looking shower sleeve, the PICC line cover, my favourite hairloss hat (which incidentally hasn’t been on an outing since my hair has started growing back), the bed caps and, dare I say it, Suzie, my not-so-trusty wig? Do I gift them to other people waking up to face the reality of a cancer diagnosis, to help them feel supported? Or, do I tuck them away in a small corner of the house as a bit of an insurance policy? (The logic here is that, if I’m prepared, cancer won’t dare try its luck a second time). While I would like to say the former (and certainly will be posting out a few items that didn’t get too much of a look in in my cancer story, but could be useful to others) I have to say, for those frequently used items, I will be opting for the latter route. I did not go through belt and braces cancer treatment only to jinx myself by not packing away a cap or two. Sounds strange for a rational woman to admit (I appreciate some may question this), but while I have changed a lot over these last nine months, this is not a part of myself I have chosen to reprogramme just yet.

So, that’s why I have decided to create a cancer capsule (a bit like a time capsule). In my mind, it is currently a shoe box stuffed with practical items I would never want to rebuy. But, who knows, it could turn into a pink box file or a plastic box if my creativity takes hold. The most important thing is that it is a box I can seal, hide in the cellar and bury in the back of my mind in the hope that one day I will open it again just to relive the fact that I kicked cancer into touch.

People have asked whether I am worried about the possibility of it returning. And, my answer is, right now, I’m not. I am sure my body will give me a few things to wobble about in the future that will send all the memories flooding back. But, there is a reason I haven’t been playing the numbers game and talking hard stats with my oncologist. I was a statistical anomaly in the first place, so why should I obsess about numbers, when they haven’t been reliable before? I spent one evening months ago using online prognosis tools and, given, they are so outdated and based on patients decades ago, I scared myself silly and won’t be doing that again. All I know is, I have done everything I can to remove cancer from my body, so I am not going to let it dictate my life. If it comes back, I will face if once more (don’t get me wrong, I would be pretty unimpressed). But, I am going to make the most of this little life of mine and celebrate the signs of aging (all except the menopause). I am just happy to be here.

So what will be tucked inside my capsule? In addition to the hats, I plan to pack away the information booklets and the names of the tablets that got my through. But, I also want to add the amazing cards I received (I read them all last week and can’t explain how much they made me smile) and my running medals, so that, if one day, I have to open it again with tears in my eyes, I will be reminded of both the support I had and the strength I found. I will smile once more through the dark times.

So, take this as my insurance policy post. My declaration of readiness and my commitment to making the most of my life, safe in the knowledge, there is a little piece of me waiting to be this strong again, should I ever need to be. Let’s all just hope I don’t.

If only getting real insurance was as easy!

Breast cancer lesson 157: It takes time to heal

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

I have lost a nail. Now, if this had been as a result of an ill-timed run up the stairs or poor football move, it wouldn’t exactly be headline news. But, given this is the first chemo nail to fall (a toenail thankfully), it is a moment I feel I have to acknowledge.

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It’s five days on from the end of active treatment and I feel I having been making good ‘moving forward’ progress. The cards are down (although Duncan now thinks the living room is so bare it looks like we are moving out not just on)! The house is so clean you could eat a meal off the floor (not something I am going to test mind you). And, I feel fitter, healthier and a little bit hairier.

The nail incident, however small it may seem, is a sign though that cancer (or more specifically its treatment) isn’t quite done with me yet!

It does feel a little mean that you can often start looking a little worse for wear when you’re not actually being treated. I am currently on ‘boob watch’ to see whether the radiotherapy is going to do any real damage to my skin (it is just a bit red and angry at the moment). I still can’t sleep properly. The menopause is still in control of my body. My hands and feet still feel a little disconnected. And now, it seems, I am also on ‘nail watch’ (which currently involves tapping and fiddling with my nails every five minutes to see if anything else drops off). At least my hair has a thin covering of hair to keep me distracted.

The thing is, to a cancer patient, nothing about the above is particularly unusual. We understand the side effects will last for a while (and signed a form to let them). We know that underneath the smiles and the ‘back to normal’ activities we may have to cope with pains and twinges. We know it will take time for us to trust our bodies to know a cold is just a cold and a cough is just a cough. We know our lives, while brighter and enriched in many ways, will never quite be the same again.

Today, it was just a nail. Tomorrow, it may be something else.

One day, I will want to forget. For now, I need to remember, so I can give my body the attention, the tools and the time it needs to heal.

I hope you’ll give me time too.

Breast cancer lesson 156: You can face any bend in the road, if you have the right people holding your hand

On By Jackie ScullyIn Happiness, Kindness, Pink hearts, Reflections on cancerLeave a comment

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For the last nine months, our living room has resembled a rather niche card shop. Of course, it started with good wishes for our engagement – and what wonderful wishes they were. Then, mid-January, there was a sudden shift to post of the ‘get well’ kind. Throw in the odd teddy bear, a few Happy Easter cards in April and a steady trickle of notes and messages throughout active treatment and you’ll get the idea.

Starting each day surrounded by a wall of words has been a real boost for me. Never far from a message of encouragement, these notelets and cards have been a constant shoulder of support, a reminder of all that is good in the world and a sign that, wherever you are, you are never far from people who love you. These words have moved me deeply, made me smile, made me laugh out loud, made me cry, made me pick up the phone and get on a train (to make contact) and given me the chance to reflect on the happy memories I have already banked over the last three decades. That’s why I haven’t moved a single one (even to dust)! And, that’s why, it’s a massive step for me to even contemplate taking them down (might actually have to get out the polish).

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Apart from the genuine kindness shown by these handwritten gestures (I am a big fan of all things handwritten), the main thing that has struck me about this word-filled wall is that I have often under-estimated just how powerful a small gesture can be. For starters, I now fully appreciate the excitement of hearing the post land on the doormat. I now see how a well-written card has the power to change the course of a day. I also now realise that the cheery post-its I used to leave on colleagues’ desks, the handmade gifts I have posted, the acts of kindness I have delivered and the messages I have written over the years have really meant something to the recipients. People have written to me about events and gestures that at the time didn’t seem significant. I now know just how much those gestures meant and, having been at the receiving end of an awful lot of kindness myself, it’s not something I will ever forget.

What is so exciting about the fact I have kept the shelves stocked with well-wishers is that I now – as part of moving forward – get to take them down and re-read the lot. I imagine there will be more than a few tears as I relive all the hugs, positive vibes and amusing memories.

Of course, I won’t be recycling them. I will pack them away, so that I can one day be reminded of just how lucky I am to be alive and to have an amazing group of people with which to share my life. Until then, I know the memory of them will live on long after they have relinquished their spots on our dusty shelves. And, excitingly, I have just received a few amazing congratulations cards (like this one), which means the shelves won’t be completely bare!

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When you have one giant paper-based hug on tap, thoughts of giving back and ‘paying it forward’ are never far away. That’s why I started my pink hearts campaign and why I now have lots of reasons to seek out and spend time with the people that have shaped my life and made me who I am. So far, I have delivered more than 20 fluffy hearts and messages to special people across the country (in no order of priority) and I am excited about the packages I have left to deliver. It will a take years, but years packed with special moments sounds pretty good to me.

I have set up a pink hearts page here on my blog, because I hope that this little initiative inspires others to reach out to the people they love. The idea is simple. First, make a pink heart (I have adapted a Kirsty Allsopp design for the purpose). Next, tuck it inside an envelope with a message explaining what to do with said heart along with a personal and heartfelt note describing just what that person has done for you. Then, hand-deliver that heart to that person. The catch? Each recipient shares their address (except for hospital staff because I don’t want to appear stalkerish) so that I can a) update my address book and b) send them a little surprise gift sometime in the future to remind them of the importance of seizing the moment and looking for the beauty in each and every day. I know that the heart will fade, but I hope the message lives on forever.

It is a sad fact of life that it takes a serious illness for us to say what we mean to each other. And, this is something I want to change. I have been writing this blog because I want to use my experience to help others. If, through one illness, we all learn to say what we feel and tell those around us how important they really are, I feel I will have made a positive difference this year. If I’ve been put on this earth to spread the love, then spread the love I will.

Whether you sew a pink fluffy heart, or pick up the phone, now is the time to get in touch. Tell loved ones what it is about them that makes you smile. Tell friends how they have made a difference to your life. Tell them, because otherwise they may never know how much they mean to you.

I don’t want you to wake up one day and feel like you’ve missed the chance to make a difference. I want you to look for the good in others and celebrate it when you find it.

We, none of us, know what is around the corner. But, if cancer has taught me anything, it is that you can face any bend in the road if you have the right people holding your hand.

Thank you for everything. You know who you are!

NB: Given the volume of notes I have received, I do have a fairly good grip on the get well card market in general, so do get in touch if you’d like some recommendations.

Breast cancer lesson 155: Why the end of active treatment can be the start of something beautiful

On By Jackie ScullyIn Radiotherapy, Reflections on cancer1 Comment

If you’d asked me on January 1 to predict how 2014 would have played out, I probably would have focused on the wedding planning and guest list writing. Little did I know, however, that the lump I had found by chance in my right breast on Christmas Eve – and written off as nothing – would change not just my 2014, but the rest of my life.

I would be lying if I said the last nine months have been easy. Two biopsies, lots of tumours, one major operation, one new boob, one surgically-flattened stomach, one course of IVF, seven embryos, four and a half months of chemo, six Zoladex injections, 24 immunity boosting injections, three tattoos, 15 radio blastings and a pharmacy load of pills does not a honeymoon make (I won’t even count the needles and the hospital appointments)!

But, the truth is, when I think back over this period of active treatment, I don’t see pain, I just see happiness. I have been turned inside out and put back together again and I am still smiling. It is not something I would have ever wished upon myself, but I have looked for the positives and found them in abundance.

As I see it, 2013 was the year I got cancer – the year that tried to take my life away. 2014 is the year I got my life back. And what a life it is!

Cancer has taught me so much – some of which I am still processing. But, the three things I am thinking about right now as I leave the hospital for the last time (for a good three weeks, which is a big deal) are these:

1) A life without the people who make you smile is no life at all: this world is full of beautiful people. And If you don’t agree, you’re not spending time in the right company. Just look at the face of a charity runner with the name of the person they’re running for on their back. Come to my house and see the wall of cards and messages that greet me as I come down the stairs each day. Have a look at my inbox! I will be forever grateful for the support, kindness and generosity shown by all those around me – from thoughtful old school friends and supportive colleagues, to amazing uni friends and new friends united by this challenging disease. I have made so many beautiful memories with beautiful friends this year and I feel truly blessed to have you all in my life. Thanks also to the kind strangers. Whether it’s a wonderful lady making PICC line covers in America, a designer drawing bespoke boob logos on my bed beanies, a nurse making me last in recovery or a hospital caterer offering me extra biscuits, I will never forget the smiles brought about by every act of kindness I have received. Here’s to more memory making (and more photographic evidence) in the next chapter. And more pink hearts of course!

2) I am who I am because of my imperfections: I have never loved my body before, because society is designed to insist I shouldn’t. But, I have learned to love what cancer has chosen to leave behind and I couldn’t be happier with what I see staring back at me in the mirror. My scars are still angry, my boob is still covered in cling film to stop the skin peeling off, I can’t feel my hands and feet and I may never be able to give birth to a child. You could say my body is broken, but I think I am stronger than ever. The mirror doesn’t remind me of cancer, it reminds me of just how far I have come in my life. I’m here and I’m smiling – and that’s all that matters.

3) Happiness is about making the best of every day and enjoying the everyday: when Duncan proposed to me I was so happy. At last we would get to have our big day. Now, I realise that it is wrong to focus on the ‘big’ days years in the future. Why dream about one day, when you can seek happiness every day. I am nearly at the end of my #100happydays project, and when I look at the photos I have posted I don’t see many huge milestones (today being one giant exception). I see home-grown veg, freshly-baked cake, moments with friends, a new ink cartridge in an old pen and a sunny day. I love what I see when I wake up in the morning and I know that life’s details – not special occasions – are what help us bank happiness. And, we all need to bank happiness, because we don’t know what’s round the corner. I fully intend to seize each and every day – and I hope you will too.

A few weeks after my diagnosis, Duncan turned to me and said he was sad that he had proposed to me. This wasn’t because he no longer wanted to marry me, but because he was sad to think that one of life’s loveliest milestones (one I had been pestering him about for years) had been tinged with sadness.

It didn’t take him long, however, to change his view. In asking me to marry him, he gave me hope. He gave me hope for a future of happy days in his company. And that is one of the greatest gifts I will ever receive. I will treasure every moment sat on the sofa, every moment walking through the park and every moment waking up at home with his face smiling back at me.

Thank you. Thank you for every word, every message, every hug, every square of chocolate and every flower. Thank you for believing in me and encouraging me the see the positives. Thank you for getting up early on a Sunday morning to run for charity, for sponsoring me and for donating pledges. Thank you for going out of your way for me. Thank you for making me the person I am today. If you’re really looking for somebody inspirational, I urge you to take one long look in your own mirror! Thank you.

This is it. This is day I have dreamed out. I can’t believe it’s here, but I am off to make the most of it!

Cheers.

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Breast cancer lesson 154: Believe you can and you’re halfway there

On By Jackie ScullyIn Charity, Happiness, Reflections on cancer1 Comment

What makes a great Sunday? Giant boob costumes, pink headbands, a cling-filmed rads-blasted boob, running shoes, a dose of determination and a celebratory pub lunch that’s what!

Yep, that’s right. We completed the 10k. And, with balloon-filled boobs on our backs, we did it in style.

Thinking back to yesterday’s aims, I am glad to report I finished in one piece with no missing body parts and we (by which I mean Fran, Sam and I as Duncan was up with the ‘running elite’) shaved off 12 minutes from the chemo run time. I think it’s fair to say when I pushed for the finish (I even had a bit left in the tank after three hills) imagining all of the amazing people fighting cancer on a daily basis – and all of those who have supported my fight – I couldn’t have been happier.

Thank you for believing in me, running with me and pledging drinks to help me raise money for such an amazing cause. I couldn’t have done it without you!

This is one finish line I won’t ever forget. Just one more active treatment finish line to go… tomorrow.

One sleep to go!!!!!!!!!!!!!!!!!!!!!!!

Here’s the photographic evidence:

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Breast cancer lesson 153: The race to the finish is on!

On By Jackie ScullyIn Happiness, Reflections on cancer3 Comments

It really is hard to explain quite how excited I am right now. You might think this strange given it is the evening before my next 10k (that means an early night and no Saturday wine), my skin is starting to look very angry and I have just discovered that the loss of sensation and general tingling feeling in my hands and feet (otherwise known as peripheral neuropathy) might be here to stay for a good six months if yesterday’s review meeting is anything to go by. But, just knowing that I have two massive finish lines to cross over the next two days makes me very happy indeed.

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I confess, I had a slight blip yesterday at my review meeting. After joking with the team doing the treatment for the day, I was ushered into a room to talk through aftercare following my last blast. It started well due to the fact I was dressed in a complicated top that took me ages to get off while I was trying to hold a sensible conversation. (I just had to laugh in the end as the surreptitious tugging on the sleeves to try and get them over my hands just didn’t work.) Once out of my top, we talked creams (you need to keep the Doublebase going for as long as you have symptoms and for at least two weeks), swimming (seems I might be able to take my first swim in a month if the skin holds), peripheral neuropathy (it seems I still have no one to talk to about this currently and it might be here to stay), Tamoxifen (as I haven’t been consented for this yet, no one in the department can prescribe the drug for me, so I have a few weeks reprieve before the 10-year course begins) and the 10k (she has given me some medical cling film to attach to my boob and under my arm to prevent the friction from causing my skin to fall off).

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Then, she mentioned the future. For the first time, a medical professional was sat in front of me telling me this was the end. There would be no more frequent appointments to make me feel like I am fighting any rogue cancer gremlins in my body. There will be no one close by if I have a ‘what if’ wobble. From Monday, I will be just another hospital number on the system, already replaced with another patient starting their journey. I should have been jumping for joy. Instead, when someone is looking across at you with tears in their eyes telling you it’s ok to cry, I felt a little sad. It wasn’t a lasting sadness (I welled up a bit but recovered well), just a realisation that the protective bubble of surgeons, nurses and doctors is about to burst. And, it won’t be long before I will be left alone to face the future, with just a packet of pills for company.

The thing is, I know I’m ready for the future. I am excited about the future. I am strong enough to face the future. And, I know I will never be alone, thanks to the sheer volume of amazing people around me. I am also delighted to be giving waiting rooms a wide berth for a few weeks at least. I guess I just wish this appointment had been less about uncertainty and sadness and more about congratulating me on a job well done. I would have preferred an ‘I did it’ sticker, a pat on the back and a big smile rather than a reminder that the end is not really the end and that the road ahead could actually turn out to be a little bumpy.

The way I am choosing to say goodbye to active treatment and hello to a cancer-free life, however, doesn’t require a consulting room. Firstly, given there won’t be fireworks or even a lolly or star sticker from the hospital (and it is a Monday as well, which makes it feel even less special), I have taken it upon myself to mark the occasion with an end-of-active-treatment present to self. I have heard of people buying shoes, bags and cars to celebrate the fact they are being allowed to get off the cancer conveyor belt, but I have opted for something practical and meaningful to me: a decent pair of trainers.

I am not sure my old pair should have really been taken round the block, let alone the streets of London in July. So, I promised myself, if I made it across that finish line, I would get a pair that wouldn’t break my feet. I bought them a month or so ago to break them in before the big race tomorrow and I do feel I have been bouncing rather than jogging around the park of late. When I put them on, I feel like I am giving my feet a big hug – and that’s got to be a good thing.

The buying of running shoes is also quite significant for me. Running deserves its very own chapter in my cancer story. Anyone who has ever taken to the road (park, trail, path etc) will know that indescribable rush that comes with completing a run/jog/walk. It is that feeling that has helped me greet each day with a smile. And, it is that feeling I want to carry with me forever. I believe a run can change a day for the better. And, my future is all about having a better life. I never thought my hips and the toxic drugs in my body would ever let me be a runner. I am so grateful to my body for giving me that chance.

These shoes are also a reminder that whatever finish line it is you need to cross, you will get there. But, you should focus on making the journey as comfortable as possible, so you enjoy every step of the way.

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Tomorrow, the aim is to 1) finish in one piece with cling film in tact and skin and nails still on 2) Raise money for the amazing charity Coppafeel 3) celebrate the end of cancer and the beginning of a healthier life with friends 4) shave even one second off the chemo run time and 5) cross the finish line with a big smile on my face. If you’d still like to pledge to buy me a drink to celebrate the end of active treatment (for each pledge I get I will donate to charity) or sponsor me, please post here!

When I cross that finish line tomorrow I cross it for everyone who has joined me on this journey. This serious illness may have tested me to the limit, but I think I will always look back on this time as one incredible ride.

All I need now is an early night and then a bit of banana fuel in the morning!

Wherever you are in the world, I hope you’ll be cheering us (by which I mean, Duncan, Fran and Sam) on!

As an aside, I will leave you with a rather amusing exchange with the shop assistant at the local supermarket a moment ago (on my mission for bananas). It went a bit like this:

Assistant: ‘How are you doing?’

Me: ‘Really well thanks’

Assistant: ‘And, how is your day going?

Me: ‘I am having a good day. Thanks for asking’

Assistant: ‘Really?’

Me: ‘Really!’

Assistant: ‘But, you do have a disease right?’ [points to lack of hair]

Me: ‘Ah yes, that would be cancer treatment. Nearly over now.’

Assistant: ‘I knew it! You’re a star.’

Seems I can’t even buy my magic running-fuel bananas in peace!