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!


IMG_3960

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?

IMG_8509

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. 

 

Advertisements
young adult cancer conference

Getting connected

In 2016, Shine decided to go large and hold our first annual conference. With close to 100 people in attendance, it was a great day and for 2017 we decided to go bigger and better! Shine Connect was held on 20th May in London and was designed as a way for young adults from across the country to come together and connect for a day. With expert speakers and much more, it’s now one of our favourite events, and this year 120 people joined us. Take a read of Jen’s blog about the day – and get set to join us next year!


Connect 1I’m not sure there are many – in fact any – other cancer conferences that combine singing and cute dogs with dating advice and frank discussions about sex and relationships. And that’s what makes Shine Connect unique!

Shine supports a diverse group of young adults in their 20s, 30s and 40s with the unfortunate commonality of having had a diagnosis of cancer. Our needs differ vastly from the older cancer demographic and Shine Connect, Shine’s annual conference, works to address those needs. It is a conference both for young adults with cancer and for healthcare professionals looking to better support young adults with cancer.

Following an introduction from Shine Directors, Ceinwen and Emma, the day kicked off with a panel discussion – think Oprah, but without the tears. Three young adults living with a cancer diagnosis, Robin, Chris and Jess, spoke eloquently about a range of subjects and took questions from the audience. Topics included dealing with uncertainty and anxiety; managing your own feelings and needs alongside the needs of your partner, parents and wider family and friends; dating after cancer; and returning to your career or readjusting career plans. Far from being depressing, their discussion was a lively, funny, raw and honest. Pretty much every person I spoke to could identify with something that was discussed on the panel and many people felt it was one of the best sessions of the day. (NB: You can view the Facebook Live video of the panel here). 

Having cancer as a young adult is a lonely business, and more than once someone at the conference mentioned the frequency with which we hear ‘oh, you’re very young for cancer!’ at clinic appointments. Having the opportunity to listen to and talk with others who are also ‘too young for cancer’ is like being hugged many understanding, warm arms. For me, this first session really set the tone for the rest of the day.

Connect 4

Shine participants, Plus Ones and healthcare professionals came together

After the panel discussion, the conference attendees split into different sessions: building resilience, fertility after cancer, managing fatigue, and supporting children through an adult’s cancer. There was also a separate session for attendees who were the family/friends of a young adult with cancer, and a session about the needs of young adults with cancer for health care professionals. Over lunch (a super scrummy, healthy spread, followed by fruit or something a little more chocolaty if you preferred!) there was plenty of time to mingle and chat with others, and to swap tips gained from the various sessions. There was also a chance to talk to some of the other organisations that had stalls in the conference “market place”. These included Ellie’s Friends, a charity providing treats like days out and theatre tickets to young adults with cancer; the Lymphoma Association; Insurance With, a specialist travel insurance company for those with pre-existing medical conditions; and Maggie’s Centres. Look Good, Feel Better were there giving makeovers, while a couple of fabulous massage therapists set up downstairs and managed to give out 50 (!) free massages over the course of the day. Last, but definitely not least, Shine had invited Pets as Therapy to the conference, giving everyone who attended the chance to meet some very cute therapy dogs!

 

Connect 2

One of the therapy dogs gets some love from a Connect participant!

The afternoon session saw some of the morning sessions repeated but there were also new sessions on sex, singing, and creativity in health. More than one person told me how difficult it had been to choose! Along with the majority of afternoon attendees, I went to the interactive sex session (that’s interactive as in talking about sex, in case you were wondering!) Led by the amazingly frank and funny Karen Hobbs and Dr Isabel White, a leading specialist in sexual problems related to cancer treatment, a range of issues were discussed, from physical limitations due to treatment, to chemically induced menopause. It was refreshing to focus on an area that is generally neglected by the medical profession.

Sex after cancer

Dr. Isabel White and Karen Hobbs hosted a great (and funny!) sex after cancer session

The day was rounded off with a fascinating keynote speech from Professor Mark Petticrew, a global expert in public health at the London School of Hygiene and Tropical Medicine, who has carried out extensive research into psychological factors and whether they influence cancer and heart disease. During my own experience of cancer and recovery, the questions of how a ‘stressful’ life might have contributed to my diagnosis, and whether emotional stress might hinder recovery, were often brought up. Professor Petticrew’s research showed, however, that there is very little convincing evidence that stress causes cancer and that many of the studies on stress and cancer are seriously flawed. It was an interesting note to end on given that so many of us worry that we have done something to cause our cancer. There’s no need to get stressed out about this too!

Mark P

Prof Mark Petticrew from the London School of Hygiene and Tropical Medicine

If you go to Shine’s website you’re able to listen to some fabulous podcasts of ‘Not Your Grandma’s Cancer Show’. Shine Connect could have been called ‘Not Your Grandma’s Cancer Conference’. It’s certainly unique in the cancer world. If you weren’t able to attend this year I strongly recommend you keep an eye out for Shine Connect 2018; who knows what fun will be added next year!

 

It definitely takes a village to make these events happen and we’d like to send massive thanks to TTA, the amazing events management company who helped us pull Shine Connect off for the second year in a row! Huge thanks also to Don’t Forget the Kids, Emily Hodge of Coaching Emily, Toby Peach and Tenovus Cancer Care for delivering some fabulous sessions at the conference! We’d also like to send a huge shout out to Look Good, Feel Better for running some great make-over sessions, and Keith and Rozalia from the Complementary Therapy Department at the Royal Free Hospital for giving free massages to our participants all day!

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!


StephAndTheo

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!

 

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.

ceinwen-emma

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

thumb_img_2363_1024

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?

thumb_img_2919_1024

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)

thumb_img_1219_1024

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.

thumb_img_3978_1024

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. 

Fighting talk: Why I’m not ‘battling’ my cancer

Most of us who have been diagnosed with cancer will be familiar with the war terminology that frequently accompanies a diagnosis. Fight, battle, war – they’re all words that get thrown around when you’re going through treatment or living with cancer. But are these words helpful? What do they really mean? In our latest blog, Sarah Carlin explains how she feels about this terminology and why she’s not ‘fighting’ her cancer.  We’d love to know what you think about the words that are used to describe a cancer experience – tweet us on @shinecancersupport or email us on info@shinecancersupport.co.uk. Happy reading!


JoJo Gingerhead, was a member of Shine who blogged prolifically about her experience of living with a secondary triple negative breast cancer diagnosis. I never knew Jo personally, but I admired her from afar, not least for her aim of “trying to find light in a dark and scary situation without using the words fight, battle, journey or survivor”.

Uncle Paul

Sarah and her Uncle Paul

The rhetoric around cancer was a bugbear of mine long before I received a diagnosis. I had a much-loved uncle who passed away from a brain tumour at the age of 28, and I’ve always been pretty sure it wasn’t because he didn’t fight hard enough. Yet it’s seemingly impossible to talk about cancer without using militaristic language.

Many organisations use this kind of language to get people on side. Reading slogans like “we’re coming to get you”, you’d be forgiven for thinking that cancer was some sort wildcard despot rather than a complex range of different diseases.

Cancer is not some sort of playground bully you just need to square up to, yet so many people seem to think it is. I’ve had someone tap their head and tell me not to worry because “it’s all up here”, as though all you need to do is stick on the Rocky theme tune and channel your own determination in order to stop those cells dividing. Something, I’ll wager, they’d never say to someone with COPD, or heart disease, or HIV.

There’s also the problem of confirmation bias. Many people who survive the disease talk about their determination not to die, so the idea that this somehow was a factor in their survival seeps into the public consciousness. But the will to live is a pretty much universal human characteristic. You obviously don’t hear from the people who were equally determined, but who died anyway because that’s how disease works.

Sarah Carlin photo 1

Blogger Sarah

Another issue is that nobody “wins” their battle against cancer, or certainly not in the way the media portrays it anyway.  Few people finish chemo, fist-bump the nurses and declare themselves triumphant. You crawl home and spend the next weeks, months, years sh*tting yourself that it’s going to come back. Often it does. If it doesn’t, then maybe, just maybe, after five years has elapsed you might tentatively feel like the danger has passed. There’s no VE day, no calling the troops home, no bunting. This is a disease in which you can never be wholly sure that the gruelling treatment you’ve just endured was enough. Sure, you may have vanquished the enemy on the frontline, but who knows if there are little metastatic guerrillas regrouping and waiting to re-launch when the time is right? My own initial brush with cancer was as close to a clear cut victory as anyone could get. Successful resection, no lymph node or vascular involvement, stage 1 – peace for our time. The bombs fell a year later, however, when it returned in not one but seven places.

Sometimes, the idea that I can fight my cancer through sheer force of will is seductive – I can completely understand why so many people choose that as a way of coping. The thought that you could die so young of this disease just seems like such an insult, so outrageous that the adrenaline runs through your veins and yes, you want to fight. As in most instances in which your life is in danger, the fight or flight instinct has kicked in.

But I know that I can’t fight my cancer. If I live, it won’t be because of anything I’ve done or felt. It will be because of a brilliant consultant, effective treatment and dumb good luck.

So whenever someone tells me I can fight it, it makes me wince – not just for me, but also on behalf of my uncle and on behalf of the many others who are no longer with us, like JoJo.

Sarah Carlin is 31 and works as freelance in PR and as a copywriter. You can read her other blog for Shine (about the perils of reading about cancer on the Internet) here

Life, but not as you knew it: Pregnancy, cancer and lights in the dark

There is never, ever a good time to get cancer, but having to face your own mortality while waiting to give birth to a new life is especially hard.  At Shine, we know a number of families who have had to cope with cancer while pregnant or shortly after birth. In our newest blog Hayley shares her story  of coping with bowel cancer while waiting to have her son.  It’s not something you read about very often (and quite frankly cancer and pregnancy seems like something that just shouldn’t be allowed!).  Take a read and let us know what you think.


Hayley pregnant

A heavily pregnant Hayley

My car keys made a nice, dramatic sort of jangle as they crashed to the floor. My purse too, made a satisfying crunch before skidding and coming to rest against the wall.

I must have made a dramatic scene: a large pregnant woman hitting the decks like that. Voices gathered in the darkness. Can we get her into a chair? Who is she? Can you hear me?

I heard myself protesting at being given a shot of morphine “I’m pregnant! I don’t want it”. The A&E staff were harried and unsympathetic; they hovered over me attaching lines, fussing and talking. A young doctor eventually presented me with a medical book to ‘prove’ pregnant women could have morphine if needs must. I didn’t try to read it.

The pain became more bearable and the scene came into focus. The A&E consultant came to talk to me. I told him I’d had bowel problems for years on and off….they kept telling me it’s irritable bowel syndrome (it’s not, and I still think today it is Crohn’s but that’s another story). He went off to look at his computer. They took a polyp from my bowel two weeks before and I hadn’t had the results.

I watched the doctor frowning at the computer, leaning in towards it as if getting closer would make what he was reading make more sense. He sighed, and came back to me and held my hand. And he told me: it was bowel cancer. Suddenly everyone who was looking after me changed. They all looked a bit sorry for me. They talked softly. They held my hand. ‘I’m going to die’ I thought and began to cry for my children and for my unborn child. How the hell could I be 32, pregnant and have bowel cancer? The world cracked and fell to pieces far too sharp to walk upon.

I was transferred to a ward where I talked to my surgeon to be. The colorectal nurse told me to go away and enjoy the rest of my pregnancy (because once I’d been induced early and had my baby, I was going to have a colonoscopy, be scanned, have a foot of my bowel removed and thus also be removed from my baby. And they wouldn’t be sure of the extent of the cancer until after the operation). So nothing to worry about then!

The rest of my pregnancy passed in a blur of worry, pain, Co-codamol and panic attacks.

One grey, rainy Sunday I became breathless. The out-of-hours doctor sent me to the hospital to be assessed and handed me a sealed envelope to take with me. It soon became a ripped open envelope: mmmm now lets see….differential diagnoses… Pregnancy normal symptom? Anxiety? Lung mets? LUNG METS…he wrote that?

All the way to the hospital I cried. I was certain it was lung mets and there was no hope.

But it wasn’t. I had to go through an x-ray (pregnant women can’t have x-rays) and a lung perfusion scan to make sure. I remember crying and one of the nurses talking to me about her mum who had died of breast cancer but had had nine years of fight before she succumbed. She had tears in her eyes as she told me the story. She gave me a bit of hope. She was pregnant too. I often wonder about her and am grateful for the way she treated me. They aren’t all like that.

One of the hardest things to take being a pregnant woman with cancer, was having to attend a million baby scans so they could keep an eye on the baby’s growth. Every time I had to sit in that waiting room full of happy expectant couples, texting their families on their phones ‘It’s a girl’ or whatever was torture. I sat there alone and scowled at the world. They had no idea what I was going through and I wanted to shout “I have cancer!” at the top of my voice and shock them all. I wanted to share my pain. You get some dark thoughts when you are in dark places.

The wait for the date for the induction of my labour was one of the hardest I have ever had to endure. The not knowing the extent of my disease, the worry about the operation, the impending separation from my baby tortured me day and night. There was no real life, only endurance. Every minute ached, every day hurt, every week burned.

Then we did it. We went through horrendous unnatural labour to meet my third child. We called him Monty. He is beautiful and is the light of my days. In those early days and nights at home I would cradle him and cry silently at the thought of being apart when I went into hospital for the operation. He was five weeks old when the date arrived. Another heartbreak. A deep, instinctual pain of separation: mother from newborn. It hurt so much I cannot describe it. My poor husband.

But time passes, doesn’t it. We endure pain, physical and mental. We wake up, we sleep, we cry and we smile. The next day always comes. I came home from the operation after five days in hospital. I ached all over, my bowels were not working in any shape or form, but I was going home. It was bliss.

They told me I was clear. I should have been relieved but somehow the reassurances were empty and hollow. I was numb. It meant everything but I felt nothing.

The story continues. More recent MRI scans I have found something on my liver – bile ducts that have closed off. The liver specialist thinks it might be PSC. It is not good news and there is no cure. PSC goes hand in hand with Crohn’s; tests for this are inconclusive and ongoing but I am pretty sure it’s there. More darkness.

The reason for my cancer was a genetic mutation, so I was always going to get bowel cancer at some point. Without regular screening and, at some point, having my whole colon removed, I will get it again. My children will have to be tested. It is possible they could share my mutation. Dark, dark, dark.

Hayley and Monty

Hayley and Monty

What I have gained out of all this is the knowledge that I can only do what I can do. I can only fight mentally. My body, the doctors, the scans will be what they are. The course of my diseases will be as they are, progress as they wish, all beyond my control. All I need worry about is my mind and how to keep it on the right path…acceptance, hope (but I’m a pessimist), openness, the making of new friends. Friends in the dark. Friends in my dark.

When it comes down to it, it is sort of alright to be in a dark place when other people are there lighting it a little with their stories, their struggles, and their smiles. I do not feel alone. And that is the biggest gift, to sit in the dark and be surrounded by shining lights.

 

Hayley is (nearly) 34 years old,a mum of three and a primary school teacher. She lives near Norwich in Norfolk where her 6 year old, 4 year old and 8 month old – together with a dog, cats, ducks and hens – keep her very busy!

Shine has a growing private online community that you can access via Facebook; many of our members have dealt with cancer in pregnancy or shortly after giving birth. If you’re looking for additional support with these issues, please also check out Mummy’s Star, a charity that provides information and financial support to families facing cancer in pregnancy and the first year after birth.