Dancing through cancer: how a new project is helping women with cancer

In a special guest post Emily Jenkins, founder of Move Dance Feel, introduces her project and writes about the work she does to support women living with cancer.


I love to dance. Be it in my kitchen, on the train platform, or (more appropriately) at a festival, I like to move. Why? Because it brings release, it’s revitalising, and it eases tensions in my mind and body. Dancing helps me to breathe better, sleep better, and feel more alive.

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Emily Jenkins

We are all capable of dancing, despite the self-conscious mind telling us otherwise. Far too often people concern themselves with the aesthetics of dance: how it looks, rather than how it feels.

I work with different  groups in community and arts contexts, and in recent years have specialised in an area known as Dance and Health. Using dance in health contexts is not a new phenomenon, though due to greater recognition of its benefits and connection to wellbeing it is rapidly growing in popularity.

My job is to break down preconceived ideas of what dance is, and inspire people to move in a way that feels good for them. I use creative techniques that encourage a greater understanding of and appreciation for the body, focusing on self-expression. Through shared, positive experiences, dance can promote social cohesion and help to build meaningful relationships based on trust and understanding.

Dance is a multifaceted art form which very much accommodates the multidimensional needs of people. In contrast to Western medicine, which often compartmentalises illness, dancing addresses the whole body, which in turn acknowledges the whole being – physically, mentally, and emotionally. This can have transformative effects on participants, as they get to know a part of themselves perhaps previously overlooked.

In 2016 I launched a project in East London, Move Dance Feel, providing free weekly dance and movement sessions for women affected by cancer. I established the project to explore what dance could offer in the context of cancer recovery, and to address a recognised need for post-treatment support.

My first personal encounter with cancer was in my teens, as I witnessed my grandfather wrestle with the devastating effects of melanoma. I recall visiting him shortly before he died and being very affected by how much the disease had taken him over. The image of his emaciated frame had a profound impact on me. Over time, as I supported friends living with cancer, I particularly noticed the overwhelming effects on the body, and also the mind.

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Move Dance Feel session

A motivation for setting up Move Dance Feel was learning that 70% of people affected by cancer report negative physical, emotional, and mental side effects between 1 and 10 years after treatment – a statistic that I found very hard to digest. At the same time, I read that physical activity proved effective in reducing the negative side effects of cancer treatment, as well as reducing the risk of reoccurrence, so I was puzzled as to why dance wasn’t being offered.

Originating at a community centre in Bromley-By-Bow with a Macmillan Social Prescribing Service, Move Dance Feel is now running in three cancer support organisations across London, providing sessions at Maggie’s Barts and Paul’s Cancer Support Centre as well. The project is for adult women (18+) with any type of cancer, including those who are supporting someone with cancer. We welcome people at different stages in their journey (pre, during and post treatment) and no prior dance experience is necessary. Participants are also welcome to bring along a female friend.

At the heart of Move Dance Feel is artistic practice, where women come together to dance instead of talk about their cancer. They meet each week to be active, creative and, most importantly, to laugh and have fun.

My favourite aspect of the project is meeting other women. As a communicative art form, dance provides insight into people’s characters and enables intimate moments of exchange. More often than not, these moments are energised and playful, but they can also be nurturing and grounding in times of instability. The nature of this exchange helps to experience a sense of belonging and can lead to feelings of self-discovery, learning from others how to help ourselves.

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Dancing at Move Dance Feel

My aim is to integrate dance as a permanent offer within cancer care programmes, and further evidence of its need within the public health sector. I am also in the process of setting up a performance element of Move Dance Feel to bring a sense of visibility to women who are living well during and after cancer – in the hope of inspiring others to dance (even if it’s alone in your kitchen!).


Emily will be running a taster session at our Shine Connect 2019 conference (11th May 2019). To register your interest in the conference and be notified when registration opens, click here!

If you’d like to know more about Move Dance Feel, or let others know it’s available for them, please follow Emily on Facebook or Twitter.

You can also find Emily at www.emily-jenkins.com.

Photos taken by Camilla Greenwell, www.camillagreenwellphotography.com. 

How running and cycling taught me to cope with chemotherapy

Having chemo? Fancy a run?

For many of us, the answer is a firm “no!”, but in our latest blog, Alison fills us in on how her approach to running and cycling has helped her to cope with her treatment for breast cancer, and we think there’s a lot of wisdom in her approach to breaking things down into manageable chunks. Take a read, let us know what you think – and please do share!


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Blog contributor, Alison Carter

Keeping fit and being a healthy weight have been important to me most of my adult life. As a child and in my teens I was hopeless at all sports (always one of the last to be picked for any team), but I spent hours doing ballet and tap, which kept me fit, flexible and gave me an appreciation of what my body could do. I wasn’t an especially good dancer, but I loved it.

My twenties saw me working hard and travelling a lot for my job, with not much time for exercise. Then as I turned 30, I discovered running and a female-only gym. Both these things made being fit accessible to me, and I had a light bulb moment when I realised I didn’t have to be good at something to enjoy it. I am not fast (my best half marathon was 2 hours 6 minutes), but what I don’t have in speed I make up for in determination. And probably most importantly, I discovered the massive endorphin rush, the so called “runner’s high”, that exercise gave me. What a great stress buster!

A few years later, as my right knee started to fail me, a friend suggested we cycle from London to Paris for charity to mark turning 40. Really???140727_North_Downs_Sportive_0114

Before I knew it, I’d bought a bike and was clocking up miles and enjoying the same benefits that running had given me. The charity ride was tough, but awesome and I’m now an avid cyclist. Through all of this, I developed a real appreciation of how amazing my body is. I may never have a flat stomach, but I love what my body can do for me.

The cancer bomb

So, it was a massive curveball when this January I was diagnosed with breast cancer. How could this be? How could this amazing body have cancer in it? Ok, I’ve had stress in my life and enjoyed plenty of wine, but cancer? Me?

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Having breast cancer treatment – with the cold cap!

I know some people feel their body has let them down when they get cancer, but I think it’s just really bad luck. I had no choice about getting cancer, but I can choose how I deal with it. My feeling is that how I treat my body is my best defence against the cancer coming back (my cancer is stage 2, grade 3). And I’m sure that being fit going in to breast cancer treatment has made a difference.

What cycling has taught me 

I’m just about to have my last round of chemotherapy (number six of FEC-T), to be followed by radiotherapy and Tamoxifen. Treatment is tough, but I have been able to bring to it what I have learned from running and cycling, and this has really helped me.

Treatment plans are subject to change, but it’ll be about eight months in total, so, I broke it in to chunks, as I would any long run or bike ride, with five clear stages:

  1. Surgery
  2. Chemo
  3. Radiotherapy
  4. Tamoxifen
  5. Recovery, the new me, after eight months.

When I cycle a long bike ride, such as Ride London, I train for it for months to prepare. Strangely, this is now how I view the last 15-odd years of my adult life: building a physical and emotional resilience that I never knew I’d need until the cancer bomb was dropped.

When I’m on a ride, I’ve learned that breaking it down to goals gets me through. I didn’t invent this, it’s standard practice; your brain usually gives up before your body does in such events, so finding the psychological plan is key. My first goal may be getting to the feed station at mile 19 where I know there’ll be flapjacks and so on. Experience has also shown me that I get a dip midway on all long rides and runs. I start to tire or pain or injuries start to niggle, and the end is not in sight yet.  In my head I desperately want to give up.

My treatment has been so very similar to this: one phase at a time, then one chemotherapy at a time, setting goals and rewards, and remembering that there will be a midway dip, but I’ll get through it.

After chemo round three I fell in to a huge dip, and I could happily have given up at that point. My hair was falling out, everything tasted of cardboard, my veins hurt and I had constant acid reflux and nausea. I was exhausted. Mentally and emotionally I was spent. But I took it one day at a time, just as I would have done on a tough run or ride.

On my good days, as I emerge from the side effects, I go for walks, do a spin class when I feel strong enough (I have to lie down for two hours afterwards!) and make sure I have goals that will give me a sense of purpose and achievement. As a result, during chemo I have done a Race For Life and cycled the Pink Ribbon Tour in London. I also ensure I have plans to see family and friends on my good days. These things exhaust me, but they fill my soul. I’ve learned to pace myself through cancer treatment just as I do through a run or bike ride.

My last chemo is next week. I know I’ll have a tough week where I lose myself to side effects, but one day at a time and it’ll be done. Then I can focus my energies on rebuilding myself ready for the next phase. That first finish line is almost in sight.

For many years, Alison was a fashion buyer. She now leads the creative photo studio for a large UK retailer. Working to to squeeze as much out of life as possible, she can often be found either on her bike, in a theatre, talking to her cat, at an art gallery, or having crazy fun with her niece and nephew. You can follow her blog here.  

For tips on how to support a friend with cancer, take a look at this blog entry. And for a list of things NOT to say to someone with cancer, read our blog here. 

 

Breathe and bend! How yoga can help you cope with cancer

Every year, at Shine’s Great Escape, we run morning yoga sessions for our “Escapees”. For many, it’s the first time they’ve tried yoga and most people are pleasantly surprised by how much they get out of it.

In this blog, Stephanie Bartlett shares her experience of starting yoga during her cancer treatment and how it’s helped calm her busy mind.  Want to learn more? Below Stephanie’s blog, we’ve posted some ‘getting started’ tips from Shine’s yoga guru (and podcast host) Tatum de Roeck!


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Stephanie with son Theo

Last July I was diagnosed with cancer.  As a young and healthy 32 year old, I certainly wasn’t expecting it, though I have learnt very quickly it genuinely doesn’t matter who you are or how ‘healthy’ you thought you were.

Cancer for me has been ‘mind consuming’. In the seven months since my diagnosis, my mind has been consumed with everything cancer related, from the seemingly endless weeks of waiting for test results to the side effects of 18 weeks of chemotherapy to the apprehension of the next course of treatment; there was just no getting away from it.

That was until I discovered yoga. My very first yoga session consisted of some simple breathing techniques and some basic stretching and relaxation. I followed my instructor and it was very peaceful. I found it easy and I soon realised that an hour had passed and I hadn’t thought about cancer.

I can only describe how I felt after my first session as a balloon floating in the sea. I felt present in the here and now.  My mind felt completely empty.  No thoughts had entered my mind the entire time. I had no idea what it felt like to be free of the constant cancer woes until then. I also felt very relaxed, like a weight had been lifted off my shoulders and like I was finally lightened of the burden.

I continued to practice yoga with my instructor about once a fortnight and before I knew it I had learned a whole yoga flow and every session we were adding to it. I was also learning more how good it was for my mind and body. Post-surgery and during chemotherapy I looked forward to each session as I viewed it as my escape from cancer. I then found myself doing yoga on my own at home in the days in between seeing my instructor – I could finally escape cancer every day. I knew exactly what to do and I loved it.

The truly great thing about yoga is that no matter how I was feeling or how physically able I was (and this changed from week to week, with the effects of surgery or chemotherapy), I was always able to do yoga. And it’s really not about getting one leg wrapped around your neck while balancing in the shape of an elegant swan – rather, it’s all about connecting with yourself and using your mind and body no matter how much you’re able to move.  Basically, we can all do it, no matter how flexible you are.

As a busy and working mum to my five-year-old son, Theo, I’m constantly on the go.  Life is always eventful and there’s no escaping the constant need to be somewhere or do something.  This consumed a lot of my thoughts before cancer and adding cancer to that mix made life even crazier. Yoga enabled me not only to calm down my mind but also to focus on simply moving and breathing.  It lets me forget the chaos that life has thrown at me and it enables me to put into perspective the important things that are worthy of my attention. Most importantly, it also helps me forget about the pointless little things that can fill the gaps.

I have certainly caught the yoga bug; I now know a moon flow, what sun salutation is and can do my warrior poses.  During each of these yoga flows, the actions and breathing are the only things on my mind. Even before the cancer diagnosis I didn’t know it was possible to escape; I’ve always had a busy mind so for me it’s been a real eye opener. Steph1

I cannot recommend yoga enough to anyone going through a cancer diagnosis or treatment – an even those that aren’t. I once thought “oh, yoga is not for me – it’s too airy fairy”.  How wrong I was!  I have even booked myself onto a four day yoga retreat in Spain, as a reward once all my treatment is over. It’ll involve hours of yoga, relaxation and a well needed break in the sun.I genuinely never believed yoga would help me as much as it does but I honestly love what yoga does for me.  Give it a go, you won’t know until you try it!

Stephanie lives with her son, Theo, who is five, and she was one of Shine’s 2017 Escapees. To learn more about the Great Escape, click here. And if you’re interested in trying yoga, read on for a briefing by our yoga instructor (and podcast host) Tatum de Roeck!


Thinking of trying yoga after cancer?

Three months after Tatum de Roeck qualified as a yoga teacher, she was diagnosed with breast cancer.  Below, she shares her tips for getting started with yoga. Tatum

Even knowing quite a bit about yoga, I was still daunted going into a new class when my body felt so alien. It was tough dealing with feeling physically limited, emotionally all over map and mentally frazzled. What made it easier was having an idea what to expect from a class and how to find the right one.

I now teach yoga as my main job and give classes as part of Shine’s Great Escape weekend. Many Escapees have never done yoga before and the class has given them the chance to find out they rather like it! So for others who think they might fancy giving yoga a whirl here are some tips and thoughts to help make finding the first class a little easier.

Yoga is yoga, right?

Not all yoga is the same. The spectrum of classes range from ones where all the poses involve lying down on the ground with cushions and blocks, to hot sweaty powerful classes that seem to be created for acrobats from Cirque du Soliel.

I’m not flexible, can I still do yoga?

Yes! Yoga isn’t about what it looks like on the outside but how it feels inside your body. You can be one millimetre into a pose and feel the benefit of the stretch. If you feel it, that’s your pose and it is perfect. Someone else might have a different rotation in their hip joint and their legs may impressively flop out, but they may be working on how to engage their muscles instead which might be just as much of a challenge. It’s good to bear in mind since everyone’s body is wildly different (and always changing) we don’t bend to yoga, it is yoga that should bend to us.

Starting Slow

Slow classes give you time to try a pose, see if it’s right for you and adjust as needed. Even if it’s a super relaxing class it gives you a chance to hear some yoga terminology, become familiar with teachers providing different options, and to build confidence for trying the next class.

How do I find a slow class?

If there is a yoga studio nearby I would either pop in or give them a call to ask if they offer a relaxing, slow or gentle classes. Some bigger studios sometimes even offer classes handily named something like ‘yoga for people with cancer’. Most mid-size studios will have great introductory offers of unlimited classes for a couple of weeks. This can be a really useful (and far cheaper) way to try out different classes. Sometimes yoga classes at the gym are unhelpfully labelled ‘yoga’. In these cases its useful to get some more info otherwise you might be in a sweaty power hour territory.

The key things to ask is it is suitable for beginners and is it gentle? If possible it may be good to see if you can briefly contact the teacher before you plan to take the class.

A lot of cancer centres like Maggie’s also offer yoga and if they don’t offer yoga on the premises it’s worth giving them a call to see if they know a place or a teacher they’d recommend.

What do I wear?

The main thing is to wear something comfortable, which doesn’t restrict movement but isn’t too loose. The reason we don’t wear baggy T-shirts is because some of the poses (like a forward fold or child’s pose) will cause loose T-shirts to ride up exposing the stomach and lower back or rising so much it covers your face. Very baggy shorts can also show a bit more than you bargained for. If this happens you spend the class fighting with your clothes which takes away a little of the joy (I’m relaying this from personal experience!).

Getting to the first class early

It’s a good idea to get to your first class 15 minutes early. There will be forms to fill out and it’s a good time to talk to the teacher before the class starts. You can let them know you are trying yoga for the first time, that you may need to take it easy or have a part of your body where there is a limitation of movement. They are the best people to give you a bit of an idea about what to expect in the class.

Do I need to do all the poses?

Nope! Yoga is about being in the body and feeling out what is right for you. Anything that causes sharp pinching pain or any sensation which takes your breath away is a sign from your body saying that position isn’t right for you at that time. If this happens you can come out of the pose slightly or fully. There is a pose called child’s pose which is the go to position any time in the practice. It’s the pose to regain your breath, to rest or simply stay there until another pose that you might like comes along.

Giving it another go

Since there is such a variety in yoga styles, teacher personalities and range of environments it is worth giving yoga more than one class to really determine whether or not it’s right for you. If you find it ultimately isn’t what you want at the moment that’s totally ok too! You’ll know what it is and that it’s there if you ever want to come back to it.

Ask for Recommendations

One of the best ways to find a class is to ask others who have tried and tested classes already.  In the comments below, feel free to share your experiences and any places or teachers you love. You never know another Shiny person may be in your ‘hood and looking for a class!

 

Life, but not as you knew it: How running has helped me cope with throat cancer

Here at Shine HQ, we’ve just launched our new campaign Smash it for Shine.  What’s it about? Getting out of your comfort zone and making 2017 your year – whether you want to learn something new, try something different, or just challenge yourself to make a change (no matter how big or small).  In our latest blog, our guest writer Vicky shares with us how running has helped her cope both mentally and physically with the shock of a throat cancer diagnosis – and how she plans to keep going until she rocks the Great North Run in September.  Have a read, get inspired and let us know how you’ll smash it this year. There are loads of ways to get involved (and we promise that most of them don’t involve running a half marathon!).


One day last September, I was diagnosed with throat cancer. What a shock – both for me and the medical team. I’m a fit and healthy married mother of two – I have never smoked and don’t drink (excessively!). Why, how, what if…all these questions flew through my mind for weeks…it’s not fair, what did I do to deserve this…blah blah blah. But there are plenty of blogs on all of that, so I wanted to chat about how my hobby, running, got me through it all.

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Vicky and running buddy, Millie

I took up running about three years ago, going from being a complete non-runner (forged sick notes for my PE teacher, avoiding running for a bus etc.), to thinking that I needed a flexible form of exercise that fit in around my life. With childcare, being a committee member of the school PTA, and very busy career, I hardly had time to fit in exercise.

So I took up running using the “Couch to 5k” app. It wasn’t easy, I hated it and was often found having a quiet sob behind my sunglasses for the first mile or so. But eventually it got easier and as each month passed I could run further and a tiny bit faster. I looked forward to getting out in the fresh air and having 30-40 minutes to myself.

Three years later, I have run 2 half marathons (the Great North Run – GNR), countless Park Run mornings, and many, many 10km races. I joined a local running club and found the fun in running with a variety of people, all ages and abilities. I also told two of the running club leaders what I was going through, and received so much love and support from them – training and rest advice which really helped.

At the end of last year (2016) I managed to complete a virtual challenge – which was to run 1000km (621.4 miles), and my final race of the year was one week after my treatment. I ran a 5km seasonally named “Reindeer Run” on Christmas Eve.

During my initial tests, back in August 2016, I had my training plan for the Great North Run to keep me going, and it kept me focused. I knew I had to eat, get some rest and follow my training plan…despite being worried sick about what my diagnosis might be. I had two endoscopy procedures within four weeks of each other, and the first question I asked the consultant was “when can I go for a run?”

The big day arrived last year and I ran the GNR 10 days after my first endoscopy operation. My consultant thought that I was bonkers but agreed that I could do it. He told me that as my body was fit and active, it was okay to run as it wouldn’t be a shock to my system, and it might actually be good for me. That feeling after 13.1 miles was amazing. I ran a little slower than the previous year but that medal means more to me than any of others where I have achieved faster times.

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Vicky and her 2016 Great North Run medal

I attended my follow up appointment (where I received my diagnosis) after I had run 5 miles earlier that morning, and it took my mind off the meeting with the oncologist. Running frees the mind, allows you to think about your breathing, and most importantly, if you find yourself a good running buddy, you can chat about random rubbish. The steps of running keeps you going. You can’t stop and cry mid-run, but I did have days when I felt I was running…. running fast… and angrily away from cancer.

I started radiotherapy at the wonderful Clatterbridge Centre, Wirral, in November…. six weeks of daily trips and treatment, with the target in my mind of continuing my running. I proudly told the nurse and radiology staff of my intentions, and they told me to listen to my body and take it easy. My oncologist and consultant have both commented on how being fit and focused has helped me tackle side effects and the treatment, and I do wonder if I might have suffered more if I wasn’t so fit?

My running slowed down during radiotherapy but I was out, in the fresh air, alive. Who cares how fast or how far you go, its getting out there that counts! Because of my treatment, I still have a sore throat and dry mouth, so my trusty water bottle comes with me, and I don’t beat myself up if I need to rest a little or walk a few steps. It’s still early days in terms of recovery and I’m happy to slowly build my fitness back up again.

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Vicky with her running crew

My message to anyone going through cancer is to consider keeping active and doing something you enjoy…that may be yoga, cycling or swimming, but during the days when you are waiting for appointments or for treatment to start, it’s a wonderful tonic to have a daily focus. Be prepared to slow down a little if you are going through treatment – even the super fit get their energy levels zapped with radiotherapy or chemo – but just enjoy the focus on your activity and put cancer out of your mind for an hour. Put on your trainers and get out there. Don’t let cancer beat you.

The running bug is still with me and I have booked races to run this year including three different 10km races and two more half marathons…..And I have been offered a charity place at this year’s Great North Run for Shine – how lovely is that? I will do my best to raise money and raise awareness of this wonderful charity.

So what are you waiting for? Get your trainers on!

If you’d like more information about how you can Smash it for Shine, take a look here.

Shine is the official charity partner of Virtually Geared, a virtual running company that will support you to reach your running goals – and send you a fancy medal once you’ve finished your challenge!

We currently have two places left to run for Shine in the 10 mile Great South Run in October 2017. If you’re interested in one of these places, drop us a line at fundraising@shinecancersupport.org.

It’s Lymphoma Awareness Month – Meet Ceinwen!

September is Blood Cancer Awareness Month so we thought this was a great time to share the story of one of our founding Directors, Ceinwen.

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Ceinwen (right) with Emma at Shine’s 2016 Great Escape

Diagnosed with Stage 4b diffuse large-b cell lymphoma in 2010, Ceinwen now runs Shine with Emma (look out for her profile soon for #BreastCancerAwarenessMonth) and heads up our fundraising activities, as well as designing our national programmes with Emma, our other Trustees and our amazing volunteers. Having been through cancer, its treatment and its aftermath, Ceinwen’s insight and experience is key to what we do at Shine and helps to ensure that all of our activities meet the needs of young adults with cancer. Read on and please share with others!

When were you diagnosed and what with?

I was diagnosed with Stage 4b diffuse large b-cell lymphoma in February 2010.

How did you find out you had cancer?

At the end of December 2009, I was pregnant. I became really unwell and had my daughter prematurely. The doctors thought that I was experiencing complications from the birth so I don’t think they took things too seriously at first. About three weeks later, I developed such excruciating back pain that I ended up calling an ambulance and going to the hospital. They gave me antibiotics but when I didn’t feel any better the next day, I went back. I then spent three and a half weeks in the hospital seeing all kinds of doctors who were trying to figure out what was wrong with me. Tuberculosis was looking like a good candidate for a while and I remember thinking “that doesn’t sound so bad” but after a chest x-ray they realised I had a large mass in my mediastinum (a part of the body I’d never heard of before!). They also discovered I had “lesions” on my liver – at the time, I also didn’t realise how bad that sounded. Eventually, someone got a haematologist to look at me and he put all the symptoms together. I’d had night sweats, fevers, loss of appetite and unbelievable fatigue – all typical symptoms – but no one had realised I had lymphoma.

What did you think and feel when you were diagnosed?

I had barely heard of lymphoma when I was told I had it. I knew nothing about cancer and was obviously worried I was going to die. I

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Ceinwen & her daughter today

was devastated and worried I wouldn’t get to see my daughter grow up. And then pretty quickly I went numb. I generally managed to hold it together during the day but spent a lot of nights panicking and crying. I was also told that I would have to stay in the hospital for six months receiving chemo and I remember wondering how my husband and I were going to manage work and a baby and cancer all at the same time.

How did the people around you react?

I think they were as shocked as I was by the diagnosis. I had never heard of anyone having cancer and a baby at the same time and neither had my friends or family. I remember thinking “Cancer and pregnancy is a thing?”. For the most part though, they rallied around. I had family and friends come to stay and look after my daughter and help my husband out. I was never short of visitors! If there’s one thing cancer taught me, it is how much I am loved. Whenever I have a bad day now I try to remember that.

What treatment did you have?

I was put on a clinical trial testing a high-dose chemotherapy regimen called R-CODOX-M/IVAC-R. I had a Hickman line and two of the rounds had 15 days of chemo followed by a recovery period, while the other two rounds were 7 days of chemo followed by a recovery period. Part of the treatment is having “IT chemo”. I remember seeing that on my treatment sheet and not knowing what it was. It turns out it is chemo injected into your spine. I was horrified! For me, that was the worst part of the treatment. I had to have it done 8 times and I’d already had a few lumbar punctures and a bone marrow biopsy by then, so by the time I finished treatment I never wanted anyone to go near my spine or back ever again!

How did you feel through treatment?

I know for a lot of people chemo makes them feel terrible, but I was so ill when I started that the treatment made me feel better. I’d been so weak that once the chemo kicked in and started to push back the cancer I felt totally different. I had a period of time where I went days without brushing my teeth or getting out of bed. To be able to get up and take a shower felt like a miracle.

What happened after treatment finished?

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Monthly immunoglobulin infusion done at the hospital

For about a year after treatment, I focused on getting my fitness back. Spending six months in bed is terrible for you and I found it hard to walk for long periods because my feet and back ached. Just as I was getting back into running, I caught meningitis. I ended up back in the hospital for a month and it was then that the doctors discovered that my immune system had really taken a hit as a result of one of the drugs I’d had. My body basically doesn’t produce b-cells properly anymore so I need monthly immunoglobulin replacement therapy to prevent me from getting any more infections. Immunoglobulins are super expensive so I like to think of myself as a million dollar woman.

Tell us about your work with Shine

Shine is my and Emma’s baby! Both of us were diagnosed with cancer as young adults and we both found there was a real lack of support out there. If you aren’t a child or teenager, you get lumped in with elderly patients who may be lovely, but they don’t get what you’re going through. I remember mentioning to some people that I volunteered with how I was missing loads of work because my appointments took all day and they said “Oh, I just pack a lunch and make a day of it”. We had very different perspectives!

I met Emma at the end of 2010 and found out she had started a support group in Dorset called Shine. I’d wanted to do the same thing in London so we decided to work together. Since then, we’ve grown Shine into something bigger than we ever imagined six years ago. Our first workshop in April 2012 had about 20 people at it. Last year, our Shine Connect conference had 100. It’s been amazing to see how many people we’ve been able to reach and support. I always thought that I wouldn’t want anyone else to feel as alone as I did when I was diagnosed. I hope with Shine we’re helping to make that happen.

What difference has Shine made to you?

Apart from loving my job, Shine has also given me friends and support that I didn’t have back in 2010. I still get regular check ups, and aches and pains still freak me out. It’s good to have people I can call up to share my worries with – people who totally get it because they’ve been there. I frequently diagnose myself with other forms of cancer – cancer of the toe, cancer of the eyebrow, etc. etc. – and it’s really good to have friends who understand exactly why I’d be concerned that the bruise on my foot is cancer (and to explain why it’s probably not)

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Ceinwen with some of Shine’s peer supporters at the 2016 Great Escape

How do you feel now about your experiences? What‘s been the biggest change you’ve faced?

I think it can be hard to feel positive about something so awful, particularly something that changes your life so fundamentally. All of the things I thought I would have in terms of family and career changed when I was diagnosed. I was working in international development when I got sick and I remember my doctor saying that the sort of travel I used to do wasn’t an option, at least in the short term.

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Ceinwen working in Kathmandu, Nepal while pregnant – shortly before getting ill.

You can’t ever go back to who you were before, as much as you might like to. Some days, that really sucks. Having said that, I’m in a good place now! I absolutely love all the work we do at Shine and have a lot of fun. I’ve laughed more in the last six years than I did in the six years before that. Having a few life threatening illnesses does give you a different perspective on things!

If you could give one piece of advice to yourself before your diagnosis what would it be?

I remember being really annoyed that I’d managed to get so ill because I thought I was taking care of myself – I was a vegetarian and exercised a lot. Obviously I got sick anyway, so I’d probably tell myself to eat more cake.

You can read more personal profiles from Shine’s community here. Shine also has an private online community that we run via Facebook. To join, send us a request and then send a message to us through our main Facebook page. 

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Life – but not as you knew it: Living the dream

In September 2017, a group of intrepid climbers will make their way up Tanzania’s Mount Kilimanjaro while raising money for Shine. One of those making the journey is Rosie Hellawell, a member of Shine’s Dorset Network. Rosie currently blogging her way through cancer treatment (and the alphabet) and we’re delighted she’s written a blog for us about how she’s working to realise her dream of climbing the world’s tallest free-standing mountain once she’s finished treatment.  Take a read, share, and let us know what you think. And if you’d like to donate to Rosie’s trip, please check out her fundraising page here.

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Guest blogger Rosie Hellawell

DREAMS: Transforming Desires to Reality Everyday through Aspiration, Motivation and scary Statistics!

Desires

Since receiving my breast cancer diagnoses in June of this year I wouldn’t say that my long term desires have massively changed. I would still like to complete my degree, find a nice guy, travel the world, buy a house….that kind of thing. Nothing too out of the ordinary. I am hoping that cancer is just a little blip in obtaining those goals and that it is actually teaching me a lot and opening up new experiences that will be useful in the future.

Reality

However, I cannot escape the reality that my mortality has massively been called into question. For the first time I feel first-hand how precious life is and how quickly it can be taken away. I see members of support groups that I am part of, incl

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NED: No Evidence of Disease

uding Shine, being taken too early on an all too regular basis. So, in the spirit of coping with reality, I must now add ‘living for a reasonable amount of time’ to my list of desires. Unfortunately, as we all know there is no cure for cancer but to become a ‘Neddy’ (to have ‘no evidence of disease’) is now also up there with the best of the rest of my desires.

Everyday

There is no getting past it: living with cancer on a daily basis is no walk in the park. But having the support of others in my age range who are dealing with similar situations to me has proven invaluable.

A lot of control is taken away by this hideous disease but I choose to retain what control I do have by taking actions towards my future. This has been anything from getting involved with different support groups, trying new sports, fundraising, blogging and becoming an ambassador for awareness charities. But on a particularly overwhelming day it can mean simply writing a meal plan and a shopping list. I find everything is easier when broken down into smaller chunks. By doing that shopping and cooking that meal and freezing up portions for future rubbish days, I am once again back in the driving seat.

Aspiration

Aspiration is defined as ‘a hope of achieving something’ or finding the inner strength to achieve. As a wise man once said, (well actually it was Dave Pickles in his webinar last week!):

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Yes, I have just stolen his quote but it makes perfect sense! This picture speaks a thousand words to me. I refuse to let worries of failing hold me back. If I don’t try, I will never know what I am capable of and the last thing I want to do is look back at all the things that could have been if only I hadn’t let fear get the better of me. I would much rather look back at all the amazing things that I did manage to achieve.

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The opportunity to climb Mount Kilimanjaro for Shine Cancer Support has come at the perfect time for me and has given me a focus to get me through my treatment and out beyond the other side. Not only will the trek itself be a huge physical and mental challenge, the fundraising and training will include targets to be met along the way. This will help with my recovery and will give me back some more of that lost sense of purpose and control.

Motivation

A cancer diagnoses is a pretty big motivation tool to get me off my backside and out of my comfort zone, saying ‘yes’ and taking on all the new and exciting opportunities that come my way. The fact that I can raise money for such an awesome charity at the same time is just the icing on the cake. It means that young people diagnosed with cancer in their 20’s, 30’s and 40’s will also be able to feel the full force of fellowship and shared experiences.

Statistics

Scary statistics do definitely help to motivate me. My current ‘favourite’ is that I have 43% chance of not being here in 5 years’ time. I discovered this at 3am one morning when Googling (never a good idea when experiencing steroid-induced insomnia). While I realise that some stats should be taken with a pinch of salt and that, compared to some people, I should be grateful for this figure, the stats also serve the purpose of reminding me that life is precious and none of us know how long we have left. Life can all too often be too short, so I for one am going to go out there and grab every opportunity that comes my way…. what better way to start than up the very aptly named Shiny ‘Mountain of Light’?!

Rosie is a mature social work student who lives in Bournemouth. She was diagnosed with breast cancer in June 2016 and is currently undergoing treatment.

Rosie regularly blogs about her life with cancer here and her fundraising page for the Kilimanjaro trek next year can be found here.

Coping with anxiety after a cancer diagnosis

As we dive deeper into 2016, we’ve noticed a lot of talk on our social media sites about anxiety.  Is it normal to feel anxious after a cancer diagnosis? What about after cancer treatment? To help you kick off the new year and get the best out of the next 12 months, we’re delighted that our longtime friend, supporter and all round Shiny person Emily Hodge (aka Coaching Emily) has written a blog about coping with anxiety after cancer. Take a read below, try out some of the techniques – and know that you’re not alone.


Coach Emily Hodge
Coach Emily Hodge

Having worked in both the NHS and health charities and then experiencing cancer myself, I have seen how prevalent anxiety is among the general population. It can be event more prevalent within the cancer community, given the uncertainty and the threat to life that a diagnosis brings.

In my coaching and therapy work with clients, we discuss and use a range of techniques that look at supporting ourselves with anxiety and moving forward in spite of it. They’re not ‘cures’ for anxiety but rather activities or routes to take depending on someone’s circumstances. Here are a few of the many.

Recognise anxiety

Being aware of how you’re coping and what reactions you have to certain situations are a start to recognising anxiety. Often we get so used to a state of mind that we forget to assess it, but understanding our tolerance for it is important. We might think it’s normal to cry in the toilets at work once a week, or to feel anger and guilt all the time but it doesn’t have to be – this might be anxiety rearing it’s head and you might need support with it.

Take a look here and here for trusted sources regarding signs and symptoms of anxiety.

Talk about anxiety

If you’ve recognised it and realise it’s not something you can cope with right now, please see your GP or another trusted person for guidance. Talking about it with someone you feel comfortable with might be the step that helps you next.

Slow down and breathe

Before we can take any big action, we may need to catch ourselves and slow down. Stopping, breathing and slowing our racing thoughts can be the first thing we choose to do when we recognise something uncomfortable. We might want to run (the so-called fight or flight response) but if we can stop rather than rush around, it can be the beginning of a different relationship with our thoughts and feelings.

One quick technique to try is the “5-5-5” breathing technique:

  • Stand up with both feet stable on the floor
  • Look forward with eyes into the distance or closed and hands by your sides
  • Take a deep breath in for 5 seconds
  • Hold this breath for 5 seconds
  • Exhale for 5 seconds
  • Repeat this 10 times (or as long as you feel comfortable) and then check out how you’re doing

Recognise when we last felt less anxious

When we’re in a calmer state (maybe after the breathing or perhaps completely separately), take a moment to think about the times when your anxiety is less present. What are these situations, what time of day do they occur, what happened just before and just after? These indicate times that you feel different, bringing in an awareness of how your mood changes and can help you to recognise that you don’t feel the same way all the time.

Recognising how you’re feeling is important with anxiety because it can trick us into thinking that we’re always like this, and it never changes. If we’re able to see that it does indeed change over time, then we can start to understand our triggers and think about how we could respond differently in the future.

Work out what you love 

Similar to the above, spend some time thinking about what you love. What is it that makes you lose track of time, the thing that helps you forget yourself, the activities or places that you simply love? How possible is it to go to or get more of these in your life? If it doesn’t feel very possible, what might need to be moved or changed to make it more possible? What does even just thinking of this activity do for you?

Get outside

People can get evangelical about being around nature but there’s a reason for it! Evidence shows that being around and able to see green aids feelings of calm. Find the bush at the end of your street if there’s no park to go to – what is it doing? How does it smell, look, feel? It’s a small, small thing but have a go and see what happens.

Equally, go outside and look up – what do you see, hear, smell, and feel? When did you last look up outside?

Finally – walking (however you enjoy it – on your own, with friends or family, a dog, a podcast, music) is a great way to move us into a different state.

Therapy

More formal support can come in many forms – there are talking therapies such as counselling and Cognitive Behavioural Therapy (CBT) which may be available through your local NHS, other therapies such as mindfulness, or body work like acupuncture, the Emotional Freedom Technique, massage, or Reiki. We’re all different and knowing what suits us is important, but you don’t have to do it alone. If you need help to find the right support, try talking with a friend, asking a therapist for a free 20-minute phone consultation, or making a GP appointment.

Medication

Many people might think of anti-anxiety drugs or anti-depressants as a last resort, but they can be a brilliant way to help with the change in chemistry that is going on in the body, particularly following chemotherapy, radiotherapy or surgeries. Medication may not be for everyone, but for others it might be just the route to be able to access other support in the first place.

Finally we might feel pressure to ‘solve’ our anxiety because there are so many apparent routes to doing so. But it can be important that we first understand what it is we are dealing with, and how we’re coping before we’re ready to do anything about it. Give yourself a pat on the back for reading this and look at it again when you’re ready.

Emily is a health psychology specialist who worked in the NHS before her own cancer diagnosis. She now runs private one-to-one, group coaching and therapy to support people during and after challenging times in their lives. She’s worked with Shine for over five years and regularly sees cancer clients. Check out her anxiety vlog and website here www.coachingemily.com