Tag: blog about breast cancer

Breast cancer lesson 180: Say yes unless you really should say no!

On By Jackie ScullyIn Moving forward, Reflections on cancer3 Comments

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Two years ago, I thought a weekend at home with time to do the laundry, make bread and run the hoover round was winning.

A good weekend was one that enabled me to prepare for the week ahead – the working week that is! (Quite what I thought I needed a whole weekend to prepare for is beyond me.)

While I was busy ‘preparing’ for life, everyone else was busy living it. 

And then, cancer tried to take that life away ­– something no amount of hoovering or lawn mowing can prepare you for.

So that’s why I started the year with a new mantra: say yes unless you really should say no. I should qualify this by adding that it’s yes to boundary-pushing, comfort-zone stealing adventures – not extra hours in the office.

You could have reviewed my 2013 by looking at the bags under my eyes and my furrowed brow. I had little else to show for it.

Not any more. Roll the clock forward to 2015 and it’s a completely different story. I pack my days with meaning and adventures and I spend my nights really sleeping (when the hot flushes don’t take hold). 

Admittedly, this may have something to do with the fact that chemo seems to have destroyed the part of my brain that used to obsess about (and remember) everything all the time. 

But, I like to think it has a lot more to do with the fact that my view of the world – and what’s important – has changed. 

This year, I have run political hustings (to push breast cancer up the agenda), delivered speeches in front of thousands of people, run a half marathon, spoken to Eamonn Holmes on Sky News at 7am in the morning, experienced a mindfulness course, featured in a video, eaten banana jam, left Europe for the first time, signed up to a marathon, run to work (well most of the way), reread my favourite books, commuted to work from a ferry, revealed 11 publishing secrets at a conference, featured in a fashion show, gone swimming before work, written thousands of words for charity and walked 20 miles through the night (for starters). 

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And it’s only August. 

In short, I have changed my life. I exercise. I volunteer. I travel. I see friends. I take risks.

I work hard. I always will (and life is too short to just drift). But I have come to realise that life needs work too. 

We can’t live a life without laundry, without routine, without leaking roof tiles and broken drains. But, we can choose how much we let life’s challenges colour our days. 

We can light a candle in the darkness. We can just get on that plane. We can say yes, even when to do so is a little bit scary.

Of course, I am not saying we should all throw out the hoover. But I think we should all remember that people aren’t looking at your carpet! 

Why am I writing this now? Yesterday, I spent two hours in the hairdresser (fourth cut since chemo) not looking in the mirror at the person I was, but looking at the person I’ve become. 

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I don’t see the woman who played it safe with the same bob for six years – the woman so busy rushing through life she’d forgotten to live. 

I see someone stronger, happier, more confident and more adventurous – and I see the bold pixie cut that backs that up. I see a woman too busy to even use a hairbrush!

So whatever it is you want to see, to do, to visit, to say, make today the day you start saying yes and making plans. Don’t wait for a brighter tomorrow, don’t turn over in bed.

Just say yes, light that candle, before life comes along (as it inevitably will) to blow it out.

I’m off for a swim!

Breast cancer lesson number 179: Remember how far you’ve come, not just how far you have to go

On By Jackie ScullyIn Charity, Exercise and breast cancer, Happiness, Moving forward, Reflections on cancerLeave a comment

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Walking a path in a tiny park by my house might seem an odd subject to break my blogging silence.

But, as I jogged the 209 (ish) steps from one side of the park to the other on my way swimming at the weekend, I was reminded of the fact that in June 2014, this narrow path was not just my route on the way to somewhere else.

It was my route to my first ever 10k.

When you’re training on chemo, 209-step bursts are more than enough. Little did I think, however, as I plodded up and down the path in an attempt to jog continuously for about 10 minutes, that I would be signed up for a marathon just one year on. If that’s not progress, then I don’t know what is!

Yes, that’s right. One whole marathon. One whole 26.2 miles around the streets of London. And I’ll be running it in a Breast Cancer Care vest.

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Those of you who have followed my running journey (from the GB 10k in July last year to the Bath Half in March) will know that, for me, running will always be as challenging as it is fulfilling. I am not a natural runner. I have a hip full of metal from major pelvis surgery in my twenties and I still set out for every session wondering if this will be the day when I won’t be able to walk back through the door at the end of it. Chemotherapy drugs tested my ability to train and improve (I ran my first 10k with my acute oncology card in my back pocket). And my hip continues to test me every day.

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A year ago I thought a 10k would be my marathon. Now, I am starting to realise, while incredibly difficult and draining, my biggest running challenge is yet to come.

My biggest fear, however, is not the race itself. No, my biggest fear, is not making the starting line. I know the training will test me. What I don’t know, as I stroll back from my latest 10k run thankfully without pain, is just how much. (Yes, as an aside, an evening 10k after work in Canary Wharf, which demonstrates just how much my life has changed.)

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If the x-ray I saw on Monday is anything to go by, my hip is happier than ever. The right hip is stable and the left side is strong and pretty bionic. I thought it would be a bit weird to snap the consultant’s screen, so below is an example of what is going on beneath the compression tights in a bit of my body that thinks Breast cancer slightly stole its thunder last year. Of course, I didn’t exactly mention the words London and marathon, but that’s because no is no longer an option. It’s now all about how.

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Why London, why now? I know there will only be one marathon in my life, so it has to be the one that pretty much starts in my back garden and the one that trapped me in my flat for eight years when I lived at the 16-mile mark (I am hoping that I might miss hitting the wall as I will be spotting all my old haunts). London is the greatest city in the world and it will be a real privilege to run (or jog/walk) alongside thousands of amazing and humbling people.

This blog post, however, isn’t really a blog about running. It’s about progress.

I think we all get so wrapped up in what we can do right now, that we forget how much we have achieved – and how hard we’ve worked to get to where we are.

In the same way, we often think a challenge now, will still be a challenge tomorrow.

Progress doesn’t have to big. It can be getting out of bed and opening the curtains after surgery. It can be tasting your first slice of bread after chemo has handed back your tastebuds. It can be running for the bus without needing to catch your breath or keeping a promise. It can be leaving work on time or tucking your children into bed. It can be remembering to say thank you to the people who have touched your life.

Progress doesn’t have to be groundbreaking. It just has to be celebrated, every day with a grateful heart.

So hear’s to a little thing called progress. Last year I never thought I would be able to complete a 10k. One year on, I am already excited about returning to the same course where it all began. This time I will be aiming for a PB, not to avoid the hospital A&E department.

The next nine months is about getting to the marathon starting line. If I get there, I know the cause and the crowd will help me every step of the way.

If you are interested in finding out whether or not I make the start – let alone the finish -you can follow my running adventure (races, training, marathon tips, inspirational runners and runs around the world while travelling) at makearunofit.wordpress.com.

My new blog is my way of moving forward.

This blog, however, will always be a reminder of just how far I’ve come.

If you would like to sponsor me to help me reach my whopping charity target, please head to my charity page. Thank you so much for your support. It means the world to me.

Breast cancer lesson number 37: Be a kind stranger. You never know when you’ll need one

On By Jackie ScullyIn Breast reconstruction surgery, Chemotherapy, Happiness, Kindness4 Comments

If you’ve ever been at the receiving end of a random act of kindness, you’ll know that a little bit of thoughtfulness can go a very long way. Kindness is the gift it costs nothing to give and the mark it leaves often lasts a lifetime.

I’m amazed and humbled when I think of all the wonderful acts of kindness that have been gifted to me over the years. For example, I will never forget the lady in the bed opposite me when I was recovering from hip surgery. In the absence of a bed on orthopedics, I was sent to the oncology ward (maybe I should have just stayed there and had my boob off at the same time), surrounded by some people with just days to live. Unable to move properly, for fear of triggering the nerve pain in my hip, it was difficult to perform even the simplest of tasks. I remember struggling to reach my water one night, only to find the lady opposite (an elderly, frail and very sick lady) had got out of bed just to fill my glass. It may not sound like a grand gesture. But, to me, the stranger in the bed opposite, it meant everything. I was wheeled out of that hospital just a few days later. She never left the hospital again.

Roll the clock forward six years and I am still touched by the kindness of strangers. Whether it be the thoughtful Waitrose delivery man (who would restock my fridge if I let him), the nurse in recovery who extended his working hours just to make sure I was comfortable or the catering lady who slipped my mum a free lunch, it’s random acts such as these that really underline what beauty there is in the world.

Only last week was I reduced to tears by the kindness shown to me by a company called Bold Beanies (they make fantastic sleep hats and beanies to help with hair loss). I ordered one navy and one pink beanie and requested the words: ‘small boobs, big smiles’ be printed on each one. A few days later I received an email from the lovely Emilienne saying the designer had thought my slogan was so good he wanted to turn it into a logo! I was so thrilled with the results, and touched by the gesture. Certainly something to smile about when the hair starts to fall out!

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Of course, in each of the examples above, these wonderfully kind people probably guessed (or knew from the tubes and the morphine in the hospital) that I was fighting. Trouble is, it’s not always easy to know who might benefit from a smile and a thoughtful gesture. But, chances are, we’re all battling in some way.

Travelling to the assisted conception unit yesterday, I was reminded of the train journey I took to get my pathology results. Mum and I were sat facing an anxious looking couple who seemed miles away from the train carriage in which we were all sitting. I didn’t imagine I’d ever see them again and get to the bottom of their anxiety. Imagine my surprise, when I found myself sitting opposite them once more – this time in the breast clinic waiting room. You just never know. Everyone is fighting. Everyone is hurting.

To the untrained eye, when I’m travelling to hospital now, I’m just a fairly ordinary young person probably on her way to meet a friend and have a nice brunch in town. Look at my breast cancer pin, the fact I move awkwardly when I sit down and the fact I am guarding my right side and you might find the picture changes. At the moment, my illness is pretty much invisible. But, that doesn’t make it any less real or frightening.

We’re all familiar with the concept of giving back, but this is my little plea to ‘pass it forward’ too. If someone is kind to you, find a way to pass that kindness on – or better still, be the one to start a chain of kindness. It could be as simple as opening the door with a smile, offering your next delivery man a biscuit or giving up your seat on the train (I acknowledge that smiling on trains in London may get you arrested). Random acts of kindness can turn a grey day into a day to be remembered.

So, join me today. I want to be a kind stranger and make the world just that little bit brighter… one random act at a time.

 

How to make a drain bag
If you’d like some inspiration, my wonderful friend Fran, has typed out the instructions for making a drain bag. If you’re keen to dust off your sewing machine and join me in making a few, I promise to deliver them to the hospital. With just a few sheets of material (instructions below), you could make the life of someone newly diagnosed with cancer, just that little bit better. Please email me at Jackie_scully@hotmail.com, if you’re planning to pick up some thread!

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Instructions below make 40 (length) x 30 cm (width) drain bag with adjustable strap

NB: I use buttons for the adjustable strap but you could use any kind of attachment e.g. a buckle.

You will need:
½ metre pretty material
½ metre lining material
2 x big buttons
Matching thread

1) Cut out both materials 45 (length) x 66 cm (width), making sure you cut the edges off first (where the material is thicker and you see little pinpricks). Also, cut two lengths of the pretty material for the strap, both 10 cm wide (1/2 metre length).
2) Pin the pretty and lining materials right sides together. Pins should sit at 90 degrees to the sewing line. Sew both sides and bottom edge as one line of sewing 4/8 from the edge of the main bag material. Cut the corners a couple mm from the sewing line.
3) Pin the two strap pieces together along one 10cm edge – right sides together. Sew.
4) Turn the main bag material the right way round and iron (into the hem).
5) Iron the strap seam so it sits open.
6) Fold the main bag material inwards for the top seam (pretty material slightly higher than lining material). Iron and pin. Sew as close to the edge as possible.
7) Fold and pin bag in half with the pretty material on the inside. Sew bottom and side seams.
8) Turn bag right way round and iron.
9) Fold the strip of strap material in half (right sides together). Pin and sew. Turn back the right way round.
10) Fold the end edges of the strap in to form seams and iron. Sew as close to the edges as possible.
11) Pin one end of the strap to the inside of the bag. Use a strong zig zag stitch to sew a square around the edge of the strap to attach it to the bag.
12) For the other end of the strap, you need 4 button holes roughly 10 cm apart (depending on the size of your buttons).
13) Sew the two buttons 10cm apart on the main bag.
14) Done!

Happy sewing!

Breast cancer lesson number 34: Take one day at a time

On By Jackie ScullyIn Chemotherapy, Fertility7 Comments

Hermione Granger (of Harry Potter fame) has something every single cancer patient needs. By this, I don’t mean books (although you get given quite a few), a wand (wouldn’t say no, though) or intellect (although it does come in handy when tackling those cancer terms). By this, I mean a time turner. Basically, if you ever need to be in two places at any time, you can.

In the absence of said magical device, this morning was a little bit challenging. My task, on the face of it, was simple. Visit the Assisted Conception Unit at 9am for a blood test with an anaesthetist and then head over to oncology for a 9.45am with a cancer doctor. You can usually get quite a lot done in 45 minutes. Not so in hospital. Blink and you can miss a whole day in cancer land.

Armed with a cup of tea (second of the day as first was one designed to warm the veins), five layers and a scarf, I was toasty and ready for my blood test at 8.50am. Little did I know, it would be 11.20am when they actually managed to squeeze me in to take it (by which time I had changed departments, undressed for the oncologist, redressed, and pretty much lost the benefit of all the tea drinking). The good news? He got the blood. The bad news? It wasn’t easy. The good news? At least I can handle the pain even with bad veins. The bad news? Even with a high pain threshold, it still wasn’t very nice.

Why is it that time always seems to disappear quickly when you need it the most? Running between departments certainly doesn’t do much for the stress levels, so first lesson of the day is: one day, one appointment. Any more and you quickly develop an unhealthy obsession with clocks (which all conveniently like to tell different times). In fact, I think my Blackberry likes to tease me by moving forward a minute a day just to play with my mind.

Albeit in the wrong order, I did get to both appointments and, am now, one step closer to the end of my treatment. Abraham Lincoln once said: ‘the best thing about the future is that it comes one day at a time.’ All I can say is, thank goodness for that. Today, I got one long look into the future. Eighteen weeks of chemotherapy followed by five weeks of radiotherapy. My reward for passing this endurance challenge? Five years of anti-oestrogen drug Tamoxifen. If that future came all at once in a giant high-dose injection, I think my body would probably start walking… with my mind not far behind. Put it this way, left arm certainly wouldn’t produce a vein for that one.

Having had a whistle-stop tour through the world of cancer drugs and its wonderful list of side effects (starting with: ‘you will lose your hair’), it didn’t take long for the subject of time to rear its head once more. Because the cancer they extracted so neatly from my body was high stage and aggressive, they want to get going… as soon as possible. For someone still strapped into a body corset for the next three weeks and still currently injecting herself with fertility drugs in any part of her body that doesn’t feel tender (there aren’t many of those left), the prospect of swapping one set of drugs for another lot (while also still trying to laugh and cough without my tummy hurting) is not particularly inviting. Guys, this is really hard – and don’t let anyone tell you any different.

It looks like my next two weeks will be a delicate juggling act of blood tests (both fertility and cancer), appointments (scans, tests and assessments), a quick anaesthetic to collect some eggs and possibly the insertion of a PICC line. Fertility and cancer are fighting for my attention and they both need time. Trouble is, by the looks of both schedules (and the current uncertainty surrounding egg harvesting day) neither really wants to wait in line. Far from avoiding two appointments in one day, I’ll be hard pushed to avoid two at the same time. If life can’t magic up a time turner (or just a few extra hours in each day), I will just have to get used to the fact that the day I wake up expecting might not be the day I end up experiencing. 

The future does looks brighter with a game plan, and I just have to accept that, for the foreseeable future, my time is not my own. All I can do is take one day at a time. If I can get through this unscathed, I will give myself the best chance of survival. Then, I might just have time on my hands – or on my side – once more.