Month: November 2014

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 167: Set your wig free!

On By Jackie ScullyIn Moving forward, Reflections on cancer4 Comments
On Saturday, I did one of most liberating things I have ever done. I chucked my wig on the first fire of the season and I watched it burn. I turned my back on its odd acrylic strands and unnatural sticky-outy bits. I decided that I would never again look in the mirror and not recognise the person starring back. And, you know what? I loved every second.
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Those of you who have followed my journey from the Orthotist’s office to meetings in town, will know that Suzie and I were not the best of friends. We tried, but after three awkward outings, I took the call that I’d rather be bald than wear something that would disguise my true self – and that may blow off in the wind leaving me bald anyway. It may have looked a bit like my old hairstyle, but it just wasn’t me.
Surprisingly, Duncan (aka the fire starter) wasn’t best pleased when I presented the extra fuel for the evening. Having paraded it around the house and channelled his inner David Walliams, I think he was actually quite attached to Suzie. Describing it as a fancy dress item, however, only strengthened my resolve. She just had to go.
So, after a series of comedy pictures, we went our separate ways – me to the shower to rub in more of the lush hair-growth shampoo and Suzie to the fireplace. It was strangely emotional, but it was the right thing to do.
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If you’re worried that this is in direct conflict with my cancer capsule idea (see lesson 158), then do not despair. This is not the same as the dressing gown I gave to charity in January. The truth is, even if I were to find myself bald again any time in the future, I wouldn’t reach for Suzie. I might reach for my hairloss hats and my sleep caps, but not my wig.
On Saturday I took control. And, if there’s something in your life that is stopping you from being yourself, then I would urge you to do the same.
NB: apologies to the environment and to charity, but Suzie needed to go. I am sure you understand.

Breast cancer lesson 166: Why we’re all allowed a wobble

On By Jackie ScullyIn Moving forward, Reflections on cancer7 Comments

When I said goodbye to active treatment, I remember being told that there would come a time when I would feel the fear. There would come a time when I would obsess over a breast change, worry about a persistent cough or be reduced to tears by a headache. While I felt positive at the time, I remember thinking that I knew the day would come. The thing is, I didn’t expect it to come so quickly.

I guess it comes from the fact that, while I love the bits I have left, I no longer trust my body. In January, I felt fit, well and happy – and we all know how that played out. Roll the clock forward ten months and I have just spent the morning at the breast clinic hoping and praying that the firm bit of fat I can feel just above my left breast is nothing more than a firm bit of fat.

I knew it would be nothing and it was – fat tissue and a rib bone I can feel more because the chemo weight has dropped off. But, a little part of me was scared it might have been something more sinister. And, that fear is not something I would wish on anyone. I have just started to get my life back. Curveballs aren’t part of the plan!

I am slightly embarrassed to admit though (especially given I deliver talks about breast awareness and the importance of knowing what’s normal) that I was more worried about wasting hospital time than I was getting checked out. I didn’t want to be typed as someone petrified of the future, because I’m not. What I failed to realise though is that, after all I’ve been through, feeling the fear and questioning your body is not just a natural reaction, it’s pretty much expected.

Today wasn’t just about fear though. A trip to the breast unit brought with it the memory of a cold Friday back in January. Today, I wasn’t just seeing my amazing surgeon and breast nurse. Today, I saw the window ledge where I tried to get mobile reception to call my parents that day. Today, I saw the room in which I was originally told I might have cancer. Today, I sat in a waiting room surrounded by frightened faces. Today, the experiences of the last ten months came flooding back. And, I had to draw on every little bit of strength I had not to let them back in.

Of course, it wasn’t all bad. I ended up having a bonus arm measurement (part of the clinical trial), which put me at ease and was the source of much banter (even if I ended up having to undress twice and flash my knickers in the mirror at the end of the examination table). I also came away having had my boobs examined and my left boob scanned so I feel like I’ve had a bonus thorough check-up, which is really reassuring.

As I left the hospital all I was focused on was how I had wasted everyone’s time (they were all so nice to me) and how I was desperately in need of a biology lesson. Then I realised that this emotion is the exact emotion that stops women going to the doctors when they feel something, the exact emotion that prevents some women being diagnosed at a treatable stage. And it is the exact emotion I will try not to feel ever again. Today is was nothing. But, why should I ever take the risk? My team didn’t mind – and nor should I.

So if you’re reading this and you’re sitting on something you need to get checked out (boobs or otherwise) make Monday the day you pick up the phone. Don’t let anything stand in your way!