Tag: Jackie Scully breast cancer blog

Breast cancer lesson 183: Life after cancer is about making every day count

On By Jackie ScullyIn Brighter Life List, Exercise and breast cancer, Moving forward, Uncategorized1 Comment

It’s not every day you call up the mother of the bride to tell her that you’re getting married in trainers – and that she needs some too!

After waiting 13 years for a proposal, I don’t think my parents ever expected my partner and I to get married.

So imagine their surprise when I announced that not only would there actually be a wedding, but that they’d have to get up at 6am to be there – on the Cutty Sark, dressed to watch a marathon, that we would be running.

Three years ago, when Duncan proposed, I had visions of a Cotswolds country garden wedding with edible centrepieces and vases of alliums.

I didn’t own trainers.

Having had my pelvis rebuilt in 2007 and pinned with metal, I ‘d never experienced the feeling of being alive (and completely shattered) at the end of a run.

But, being diagnosed with breast cancer, just three weeks after getting engaged (not to mention being told by your oncologist that you are likely to gain three stone during chemo) did a lot to change that picture.

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I chose to run during treatment because I wanted to show my body that it can take a lot of things – forcing me to learn to walk again in my 20s and stealing my boob in my 30s – but that it couldn’t define me. I chose running because I knew it would be hard. I chose running because I needed to find a reason to get out of bed and feel the sun on my face. I chose running because I wanted to feel alive at a time when my body had other ideas.

With my nurse mum as carer, Duncan could be my running partner (by which I mean running in the same races miles ahead of me). It kept us going when circumstances could have so easily ripped us apart. Running changed the course of my days and, in so doing, changed my life.

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This is a hard post to write at a time when I can put on my trainers but I can’t move forward. But, while I am injured right now and in the hands of surgeons and physios as they try to diagnose my pain, it is the dream of a cold day in April and the London Marathon that keeps me going.

When you’ve fought for your life, it’s hard to plan too far ahead and rest your happiness on one day in the future. So, when we started talking about our wedding earlier this year, I knew there was only one way to do it. There wouldn’t be an aisle. There wouldn’t be a first dance. There wouldn’t be a day in the Cotswolds.

Our wedding had to be a chance to give back, volunteer, thank those who have supported us and to remind the world that life may be hard but, by focusing on the little – and often beautiful – details of life, you can make every day count.

That’s why the ceremony is happening at 7.30am and the honeymoon will be spent on the Great Wall of China.

I know wedding planning is supposed to be stressful, but I thought that by cutting out the favours and the sit-down meal and focusing on charity it would be a little less involved.

Not so. With road closures, a running wedding dress being designed by the incredibly kind and brilliant Frankie Seaman (Professional Ice Skater from Dancing On Ice), a hen 10k run and a gel bouquet all part of proceedings, I know this will be an experience we will never forget.

I know a hip full of metal, superglued stomach and tummy-fat filled right breast (from mastectomy surgery), oh, and asthma, do not the best running companions make. I know that my next run could be my last (I haven’t ruled out walking it if I am not able to run again). I have been told – on more than one occasion – to find another hobby before I break myself completely (and I will if you let me run one more marathon).

But, when I’m running, I have everything to smile about and I certainly didn’t beat a life-threatening illness just to play it safe.

Our wedding isn’t just a celebration of love and life. It’s a chance for us to thank the people who helped us find our way back to happiness both during and after treatment.

We also want it to serve as a reminder to everyone going through difficult times – whether it be serious illness, or loss, financial difficulties or the daily problems of life – that there is a way to move forward.

If you’re reading this, you’re already on the journey with us. Welcome to the team!

If you’d like to support us please visit: bit.ly/2eSLaed

I will be also writing about the big day and beyond on my blog thisdayforward.org and via Twitter @Jackie8.

Breast cancer lesson 177: Give a girl the right pair of shoes and she can conquer the world

On By Jackie ScullyIn Exercise and breast cancer, Moving forward, Reflections on cancer2 Comments

Ok, so Marilyn Monroe probably wasn’t talking about a pair of running trainers when she came out with the above quote. But, when you’re standing on the starting line of a half marathon, the right pair of trainers can be the greatest of companions.

I can’t say I conquered the world on March 1 running around the streets of Bath in a giant boob costume for fantastic charity CoppaFeel. But, given I started the race with a hip injury that threatened to stop everything in just a few steps I certainly conquered something that day.

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I’d like to say the hip injury was as a result of extensive training and my two 13-mile practice runs, but the reality is actually a lot more amusing. The pain in my quad muscle (which felt like rock just moments before the race) was caused by sitting in a cross-legged position for too long in a silent meditation. I can hear you now. Jackie Scully can take on cancer, smile through treatment and run 13 miles for fun, but struggles with that challenging activity of sitting. It’s funny now. It wasn’t last weekend.

The run was emotional for more reasons that my clicking hip and aching groin. While comfy trainers can be the greatest of companions, so, too, can two amazing friends Alex and Fran. They stuck beside me, encouraged me with every step and gave me the confidence and the strength to get me to the end. I knew they could run faster, but the fact that they didn’t is something I will never forget.

Those of you who have followed my running journey will know that it was fantastic Fran who kept me hydrated and positive when I ran my first ever 10k just a week before my last chemo. It was Fran who lined up next to me for my next 10k just hours before the last day of active treatment. And it was Fran who stopped when I stopped and laughed when I laughed last Sunday – and even found time to dance along to the music being played. She says the running has been great for her. I am so thrilled, because her support has been great for me and I feel truly blessed to have her in my life.

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Then there’s Alex. Last year, my wonderful school friend ran the Bath Half for CoppaFeel after her mum was diagnosed with breast cancer. Her sponsorship page reminded me of a great friendship we’d once had and her amazing can-do attitude. We met up after seven years apart last summer and it was then that we vowed to support the charity that brought us back together in our home town this year. Last Sunday, it was Alex doing the chanting, encouraging and the energy gel supplying and I knew when I stood beside both her and Fran waiting to cross the starting line that we would find a way to get to the end together. (We were also joined by the lovely Kelly Packer and Amy Sparks on the course, both schoolfriends I hadn’t seen for 14 years!)

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I may sound dramatic, but when your leg is giving way and you can’t walk without pain going in to a half marathon, it takes a lot to even start. Thanks to a knowledgable physio, I knew I wouldn’t end up in my hip surgeon’s office with a rather guilty look on my face, so I knew it was up to my mind to convince me I could get round.

And convince me it did. Two hours and 30 minutes later (we ran all the way barring two stretching stops), we crossed the line holding hands only to fall into the arms of a Telegraph journalist. (For those of you with a copy of Friday’s paper, head to the back page of the sports section.) We also made the local Bath Chronicle too. And, the regional BBC news station took this as we crossed the line (it hurt that much)!

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My mindfulness course (the reason for which I was sat in a cross legged position for so long) may have brought on an injury, but it has taught me a very valuable lesson over the last eight weeks. Pain is inevitable and not something you can or should look to avoid. But, pain doesn’t have to lead to suffering. If you don’t resist it and accept what is happening to you, pain is just pain. I know what pain feels like, I know how to ride it out (and medicate against it) and I am proud of myself that I can run 13 miles aware of it, but not ruled by it.

You could say I was foolish given my hip history. I hope, however, you will just see me as even more determined.

How can you stand in a charity tent with Kris and Maren Hallenga (the amazing sisters who spend every waking moment trying to wipe out the late detection of breast cancer as part of CoppaFeel) and not vow to make it round.

They inspire me, it was their charity that brought me back to Alex, it is their charity that has seen me talk about boobs more times in the last year than I thought possible and it is their story that is the reason we should all feel happy to be alive.

If you haven’t found the right shoes to conquer your world, it’s about time you went shopping…

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

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

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

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

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

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

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

This is where is was before the chop:

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And this is the ultimate aim:

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Bit more hair, bit less forehead required!

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

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

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

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

Breast cancer lesson 175: You don’t need a nipple to feel whole again after cancer surgery

On By Jackie ScullyIn Breast reconstruction surgery, Moving forward, Reflections on cancer2 Comments

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A few days ago, I called the hospital and took myself off the waiting list for nipple reconstruction surgery.

It wasn’t a rash decision (many a cup of tea has been needed in the build up), but as far as decisions go, it is among the best I have ever made.

I must confess that while I would have loved to have said to colleagues and clients: ‘Sorry, I won’t be able to make the meeting as I am having my nipple put on that day’, and, while part of me liked the idea of being put back together again, a huge part of me was shouting: ‘Why?’

After surgery and finishing active treatment, it felt like the natural next step (why wouldn’t I go for a cherry on top’?!). Sitting in front of the surgeon talking about cutting and snipping and stitching back in October, it seemed like a quick and painless procedure and an easy way to forget the past.

But, ask me what I am thinking about six months on and I can tell you, it’s not a pink, fleshy (albeit realistic) blob on the end of my fat-filled right boob. It’s the fact that I am happier, healthier and fitter than ever and a nipple really won’t add anything – except a ‘permanent outy’ that no amount of warm weather would conceal.

Now, I realise that I was more curious than in need of an extra asset. And, curiosity just isn’t a big enough reason to brave a hospital gown, needles, a knife, an operating table, a series of nipple tattoos and the memory of a year in the warm, but treatment-focused arms of the amazing NHS.

I guess you might call me lucky. Strange as it sounds, I don’t want to hide from my scars. Each one carries with it a story that makes me who I am. Each one reminds me not to worry when I get caught up in the complications that come with everyday life. Each one keeps me grounded. Each one is a reminder of all I had to lose and all I have gained as a result of this challenging – and yet weirdly fulfilling – period of my life. My scars are just as much a part of me as my right foot that turns in and my dodgy hip. I am not looking to replace them, but embrace them. I have no ambition to be a topless model so why would I cover up what is always covered up.

I read my story in the lines that cancer has given me and I smile. I smile because they remind me not of pain and surgery, but of just how far I have come – and of just how far I want to go. It is with these scars that I will be lining up on the starting line of the Bath Half in two weeks (and the Pink Ribbonwalk in July and the Royal Parks Half in October). It is with these scars that I will be flying to the Caribbean (yes, leaving Europe for the first time) with my new size 6 tankini (sun-exposure conscious as ever). And, it is with these scars that I hope to make a difference on this wonderful planet of ours. As I said, all the way back in lesson 21: ‘scars remind you where you’ve been and how hard you worked to get there. They don’t have to dictate where you’re going, but they can give you the strength and determination to make sure the path you do choose is a beautiful, interesting and inspiring one.’

Last year, I came face-to-face with my own mortality at the age of 32. I had the chance, at a young age, to reflect on what my gravestone could say and I decided the message needed to change – and fast. I can guarantee it won’t ever say: ‘Here lies Jackie, cracking right nipple.’ What I hope it will say (and not for a very long time) is: ‘Here lies a woman who smiled, laughed, lived and loved – and dedicated her life to helping others do the same (admittedly may need editing as I am not in the market for a tomb)! Sounds morbid, but I have plenty of years to get it right.

Breast cancer lesson 173: Good things come to those who wait

On By Jackie ScullyIn Moving forward, Reflections on cancer4 Comments

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While a trip back to oncology in the first week of January was never going to make the 2015 highlights list, I am delighted to report that, as appointments go, it was actually rather nice.

For starters, when a doctor says the words: ‘well done’, ‘congratulations’ and ‘now go away and forget about us’ in the space of a four-minute conversation (that was actually stretched out because I had waited 1.5 hours to be seen), you know things are going to be just fine.

It was a strange experience walking back down the street to the hospital, passing the chairs where I waited anxiously on more than one occasion and sitting in the waiting room smiling conspiratorially at bald patients. I have to say, if you’ve got short hair (or in fact any hair), an oncology department is the place to go to feel hairy!

With such a glowing report, you’d think there wouldn’t be a test attached but, this being a research hospital, you can’t move across the waiting room without someone waving a consent form and asking you to sign away relevant bits of your body.

This time, I was asked whether I would participant in a genetics research project for 300 women with lobular cancer. Apparently, given lobular cancer (click here for more information) is less common than ductal, they are exploring whether or not there is a genetic reason why people are diagnosed. Sadly, my individual results will not be shared with me (and I didn’t qualify for genetics testing because the cancer in my family is, thankfully, too far away for concern), but I hope that the research study, when it’s completed, will help many more people in the future. Things are easier to fix (or prevent) when we understand them.

Of course, for me to be a useful participant, I needed to provide one thing = blood. A year ago (blood donor that I was), I would have thought nothing of this and dutifully presented my arm. Trouble is, with good blood-giving arm permanently banned due to it being a lymphoedema risk, giving blood is no longer the breeze it once was. I signed the consent form willingly, but then I added: ‘Trouble is, you may not be able to get any blood to test.’

Undeterred, the nurse approached my arm and proceeded to prod, press, warm, wiggle, rub and tap it. Anyone familiar with my fertility preservation blogging days will know that no amount of coaxing brings these veins to the surface (eight failed attempts is my record). After a few attempts (given it is elective rather than compulsory she refused to continue) she sent me packing with the promise of a rematch – and hand-pumping exercises to do while watching the TV to strengthen my veins so that I play ball in future. I am not sure any amount of pumping will make my arm needle-friendly (especially as it wasn’t ruined by chemo, but always a bit rubbish, but I would very much like to contribute to the research, so I better give it a go.

I can’t quite say I’m discharged (that revolving oncology door will always be open to me), but with no follow-up form and the suggestion that I go and erase the word oncology from my mind, I’m as good as free (to see the breast surgeon annually – so not quite as free as I’d like).

Next up, the end of treatment clinic, a mammogram and a new nipple. Then I might just take a holiday!

Happy new year one and all. May it not involve too many more waiting rooms!

Next up, the end of treatment clinic, a mammogram and a new nipple. Then I might just take a holiday!

Happy new year one and all. May it not involve too many more waiting rooms!

Breast cancer lesson 172: Christmas miracles do exist!

On By Jackie ScullyIn Fertility, Moving forward, Reflections on cancer5 Comments

After friends hailing last Christmas’ engagement (after 13 years together) as a true ‘Christmas miracle’, I am delighted to report I am the welcome recipient of yet another one.

Today, on my official ‘lumpiversary’, my body has decided to celebrate by starting its first period since the start of treatment. Not something I thought I’d ever celebrate – or even talk about publically – this news is the best present those of us who have undergone chemo and risked infertility could hear.

Cancer takes a lot of things, but it I said at the very beginning, if it wanted to take away my chances of being a mother, it was in for a tough fight. But whatever happens in the future, even more exciting is the fact that this 33-year-old body is, at last, fed up of acting like it’s about 62.

Today is the day I reclaim my body and femininity, and that makes it a great day!

I write this for every woman facing or undergoing chemotherapy and hoping that one day soon, they too will smile in face of a packet of tampax. It took 20 weeks from the end of chemo, but it happened. All I hope is that, if you’re reading this and hoping, it will happen for you too.

There is hope for us all.

Let’s just hope the cramps are kind!

Merry Christmas one and all!

Breast cancer lesson 169: Why getting organised helps me get closure

On By Jackie ScullyIn Moving forward, Reflections on cancer2 Comments

This weekend has been dedicated to the cancer-equivalent of a spring clean. I have cleansed my cupboards and drawers of sleep caps, hairloss hats, information leaflets, running medals and PICC line covers and I have, at last, sealed the cancer capsule I wrote about in lesson 158.

It was long overdue, but it was as liberating and therapeutic as it sounds.

Getting closure is the subject of my latest blog for Breast Cancer Care (which will be uploaded to their site soon, but here is a link to the others if you’re interested). And, sealing that Cancer capsule is a big part of it.

For those of you wondering what I mean by a Cancer capsule, it’s this. Over the last eleven months I have accumulated a lot of cancer-related ‘stuff’. Of course, the natural thing would be to donate everything to charity so that others can benefit. But, the trouble is, the last thing I gave to charity was a lightweight dressing gown I wore in hospital when I had hip surgery in 2007. I hadn’t really worn it since so, on January 1 2014 it left the house – just a few weeks before I had to buy another one! I am a little superstitious, so giving the things away that kept me going sadly isn’t part of the post-treatment plan.

So, that’s why I decided to create a cancer capsule – a box I can fill with hats and sleep caps and PICC line covers and tuck away in my house as a little insurance policy. It started life as a shoe box and is now a giant pink plastic box (with a lid) packed with everything from my boob cushion and plastic shower sleeve to the running vest I wore when I completed my first ever 10k in July this year.

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Yes, it is practical (I would never want to rebuy these items if it ever came back), but by filling it with every single card, note, letter, good wish, running medal and fact sheet I have received this year, it’s a box that says: ‘I can do this’, if I ever have to ‘do this’ again. This box is my story. With the words ‘be brave, be bold, be you’ stuck on the lid, I know 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. This box has everything I need should I have to smile through dark times once more.

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Of course, cancer-related organising does go further than packing old items away. This little pill pot organiser is my new best friend, making sure I take my Clonidine and Tamoxifen every day without fail – and making sure I don’t accidentally overdose in the process. It’s more colourful than the clinical packaging and, thanks to a card packed with Boots Advantage points, it didn’t cost a thing.

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Today I declare myself free of cancer clutter!

With the wig burning and the capsule tucked away out of sight, I know I am getting closer to that wonderful thing called closure. I’m not there yet, but I know one day I will be.

My cancer capsule is packed away – and so too, for now, are my memories.

 

Breast cancer lesson 168: Why I am about to run for my life – and for charity

On By Jackie ScullyIn Exercise and breast cancer, Moving forward, Reflections on cancer9 Comments

One thing you may not know if you haven’t had the pleasure of being prescribed an oestrogen blocking anti-cancer drug is that Tamoxifen, my new friend for the next decade, has a nickname. It’s a bit too ‘rude’ for me to mention it here (you’ll just have to trust me that it isn’t nice), but let’s just say, it’s a nickname that only now I fully understand.

While I will be forever grateful that there exists a drug that can reduce the chance of my cancer coming back (and I really am grateful), I do just wish it could do its stuff without raising my anxiety levels (trust me, this pill can make the washing up seem like an uphill struggle), stealing my sleep and generally ageing me by about forty years. When I heard about people’s experiences of the drug I honestly thought that, after chemo, it couldn’t be that hard. But, faced with taking a potentially mood altering drug for ten years, part of me would rather endure another short-term course of the toxic stuff than have to ‘check in’ with my body every five minutes to make sure it’s in one piece.

Don’t get me wrong. I am still really happy and thankful I have my life. And, if this is what I have to do to prolong it, I will do it. But, I guess Tamoxifen (the effects of which I think are starting to kick in now my body is leaving the effects of chemo and Zoladex behind) is my daily reminder that, far from finishing the fight for my life, I am still very much at the beginning.

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Which brings me to the title of this blog post. When I knew things were about to get tough before chemo, I hit the road with my, then, tatty trainers for the first time in a decade. I hit the road, not because I was a runner, but because I wanted to stay sane and counteract the weight gain. I did it for me (as well as raising money for charity) and I think it is one of the biggest reasons why I started and finished treatment with a smile on my face. Running (or more accurately, jog/walking) saved me this year. And, you know what? I think I need it to save me again.

I confess, I hate the thought of running. I even hate the getting dressed for running part. But, the feeling I get when I arrive back home after a jog through Greenwich Park is a feeling I wouldn’t give up for the world. It was that feeling that got me round the streets of London when I had chemo drugs running through my veins. It was that feeling that made me choose a run over a party at the end of active treatment. And, it is that feeling that I hope will help me over the finish line of my next, and biggest, running challenge to date. On March 1, I will be back on home soil running the Bath Half Marathon.

Whether my legs will go the distance is still a subject hotly contested at my family home in Wiltshire. But, while I can’t predict the future and second guess whether the hip problems that plagued my twenties will return, I know that I will give it my best shot. This time, it’s not about weight management (although I do get to eat more cake). This time it’s all about the mind and showing my body that, however hard it tries to bring me down with its cocktail of drugs, it will never take my spirit and my determination to succeed. However I do it (and it won’t be graceful), I will be crossing the line in March for every person who needs Tamoxifen to keep them alive. It seems a cruel joke that after nine months of active treatment, just when we all want a break, we should be faced with yet another drug-induced challenge. This is one challenge, however, I will overcome.

Of course, I am not just running for me. I am running for amazing charity CoppaFeel. Those of you who have been following the blog will know just how important CoppaFeel is to me. You just need to spend a few moments with twin sisters Kris and Maren (who founded the charity) to know just how special they are. They work so hard, with very few resources, in their fight to wipe out the late detection of breast cancer. Kris is dying. Maren has to watch her sister fight the disease every day. And yet, both are dedicated to making sure other people they don’t even know – or will ever meet – have the chance to enjoy a long and happy future. It seems to me the ultimate selfless act to give your life to helping others when you don’t know how much of it you have left. If that’s not worth a few quid, then I don’t know what is.

As with the last two races, I won’t be heading to the starting line alone. Back in July my wonderful friend Fran stuck by me (when I knew she could run faster) as I completed first the British 10k. She turned out again in September and has been persuaded to join me on this, no doubt, cold wintery day. She believed in me when I thought I had nothing left and, for that, I will be forever grateful. Duncan will be heading out too (we may even get him in a giant boob this time), although we probably won’t see him after the warm up. And, it means the world to me that my amazing school friend Alex will be returning to the course (after tackling it last year of CoppaFeel) to help me round. With that kind of back-up, I just have to hope and pray my legs don’t let the side down.

Running as a non-runner has been an emotional and amazing journey. This time, with winter training, double the distance to run and the same dodgy hips, we need all the support we can get. If you can spare just a few pounds to make that training (followed by mince pie eating) worthwhile, then please head to our Virgin fundraising page. Then all I ask is that you return to this page to post (as a comment) the song you think will motivate me, make me smile and remind me of you. I want to create a playlist of requests that remind me of the people who believe we can get there. I know that will give me the motivation I need to step out over the coming dark months even when the lure of Christmas lights and cooked ham is more appealing.

Together, we can help Kris and Maren make secondary cancer a thing of the past – and show Tamoxifen who’s really the boss of this body!

Thank you.

Together, we can help Kris and Maren make secondary cancer a thing of the past – and show Tamoxifen who’s really the boss of this body!

Thank you.

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!