How pets can help you cope with cancer

When the going gets ruff, the woofs get going: How pets help us to cope with cancer

Sarah Carlin (33) who has small bowel cancer and lives in Liverpool, explores how Shine members’ furry Florence Nightingales are helping them live better with cancer…


I’ve been dealing with cancer since 2013. It’s as about as much fun as it sounds.

During a particularly dark period recently, I realised that one of the few things capable of raising a genuine smile was my dog Elsie, a Cairns/Yorkie cross with about nine teeth and breath like the bottom of a fishing trawler.

My 50th attempt at taking a selfie with Elsie

Sarah and Elsie

I then remembered all the other times that pets had helped me through. Pre-diagnosis, when I would spend hours lying in bed, throwing up industrial amounts of green bile into a washing-up bowl, my mum’s cat Flo – who, it has to be said, would probably at that stage not have said hello to me in the street if she were human – would come to my bedroom and gently knead me with her little paws. When I was feeling better again, she’d get back to blanking me. During chemo, our family dog Bunk – a rescue Staffie cross who definitely missed his calling as a late 90s emo – would come up to my room and lay a heavy black paw on my stomach, as if to say “I understand”.

With a hunch that I wasn’t the only one being looked after by my pets in this way, I asked the Shine community about their own experiences with furry friends in Shine’s closed Facebook group. It quickly turned into a love-fest about all things on four legs, for the following reasons:

1. They’re a reason to get out of bed (and the house)

Alison's SuzyQ

SuzyQ

Owning a pet dog is like having a weird hybrid of a physical therapist, life coach and in-house dirty-protestor. Crippled by fatigue? So depressed you don’t want to get out of bed? Struggling after a big operation? They don’t want to hear it. They want you out of those PJs and taking them round the block, stat, or they won’t be responsible for the consequences. And they can’t promise that those consequences won’t be coming via their digestive system either. And even pets that don’t need to be walked – like cats and rabbits – need to be fed and watered.

 

The positive impact that this responsibility has can’t be

Fran's George

George

understated. One Shine member, Julie, remembered that her dog Izzy helped her recovery from an operation for bowel cancer by getting her active again just seven days after surgery. Fran, diagnosed with chronic myeloid leukaemia at 29, said her cat George was her “reason for getting out of bed every day, no matter how rubbish [she feels].” And Alison, who had treatment for breast cancer recalled that her cat SuzyQ gave her “a sense of purpose and unconditional companionship”.

2. You can share in their joy – without the complicated feelings

When you have cancer, especially as a younger person, you often feel disassociated from your peers. It’s great spending time with your friends, but sometimes it’s tough seeing the life you could have been living if the C-bomb hadn’t been dropped on you. You know, having babies, having hair, being able to get travel insurance without selling a kidney (which nobody would want to buy anyway, obvs) or just being able to plan something in three months’ time without factoring in worst-case-scenario scan results. Basically, whatever you’re doing, whoever you’re with, cancer is there in the background like a sinister ostinato, reminding you that life isn’t as you hoped it would be – something that can be really destructive to your relationships and your state of mind.

How pets can help you cope with cancer

Your interactions with pets will carry no such baggage, however. You can truly be in the moment and share in their enthusiasm for life, whether that’s chasing a ball, trying to swallow a piece of cake whole or their absolute joy when you walk through the door after-surely-abandoning-them-forever (a.k.a. going to the shops for half an hour). You can share in their perfectly mundane triumphs with no complicated feelings. Unless, say, you had a real love for Chappie dog food but ate too much after a chemotherapy session once and now you’ve gone right off it. Or you used to love chasing mice but your oncologist has told you to knock it on the head because it’s an infection risk.

3. They bring the lols

How pets can help you cope with cancer

Elsie makes me laugh every day, whether through her world-class meerkat impression, her iron will or the fact that whenever we walk past the British Legion, she always, inexplicably, tries to go in (FFS Elsie, you’re barred!). And I’m not alone. Lisa, who has bone cancer, said her little dog Coco “brings a smile to my face every day…brings happiness and makes every day worth living.” And Christine, who has bowel cancer, said that her bunnies, Marigold and Juniper, “always make me smile even if I’m feeling awful.”

Christine's Marigold & Coco

Marigold and Juniper

 

4. They really care

I was blown away by the number of people in our Facebook who shared stories of the TLC given to them by their pets. There were dogs trying to ease painful legs, horses sensing when their owner was having a bad day and amazingly, given the fact that they have reputation for being the haughtiest of the household pets, an awful lot of very caring cats who would be a real asset to the NHS.

Lyndsey, who has Hodgkin’s Lymphoma, remembered that her kitten, Stinky – who she adopted during treatment – would carefully settle into the crook of the arm that didn’t have a PICC line in it and purr her to sleep. Another Shiny, Jo, who has metastatic breast cancer said that her “Bichon baby” Pixie who “curls up with me in bed when I feel poorly and keeps the cuddles coming when I feel low” helps her cope with her situation.

Jo's Pixie

Pixie

5. Sometimes, it seems they can perform their very own PET scans (boom!)

One thing I wasn’t expecting when I put my post up was the number of people who had stories about their pet appearing to try to alert them to the fact they had cancer. Tracey remembered that her cat would always lie on the breast that had cancer pre-diagnosis. Anne’s dogs Buster and Lucky started to repeatedly snuggle into her left armpit, which prompted her to do a self-check and find a lump that was eventually diagnosed as aggressive triple negative breast cancer. And one of Danielle’s dogs kept digging on her leg so much that it prompted her to go to the doctor in case she had some sort of infection. It was actually a chondrosarcoma. That animals can sniff out cancer is actually a recognised phenomenon; some sharp-nosed pets are already being used to assess urine tests in the NHS. You can read more about the science behind it here.

We loved talking about our animals and I’m so glad that I – and so many other Shine members – have pets that are helping us through some very tough times. Here’s to a very furry Christmas and a yappy New Year!

PS We couldn’t fit all the pet photos that were submitted into this story. But they’re below if you want a quick look at the Shine Super Pets!

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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!


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.

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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. 

A Shiny, Cloudy Escape

The Great Escape is Shine’s flagship weekend for young adults with cancer. Every January we gather 22 people at the Grove Hotel in Bournemouth for a weekend of hanging out, information, walks – and usually some karaoke.  This year’s Escape (our third!) was just as fabulous as our earlier two and we’re grateful to Robin Taylor who has written a blog about his experiences at the event. We’ll open registration for our 2017 Escape in October but you can learn more about it on our website, including videos from our previous weekends.


 

A Shiny Cloudy Escape

Photo - Robin Taylor

Our blogger and 2016 Escapee, Robin

Just before Christmas 2014, I was diagnosed with Burkitt lymphoma, a form of blood cancer mostly seen in children and adolescents. I am 34 and was previously pretty healthy. I have since been through a rollercoaster ride of treatment and recovery and 12 months on I’m finally settling back into a routine. I joined Shine Cancer Support to meet people of my own age who have been through similar experiences and decided to apply for the Great Escape because it seemed like a great opportunity to network and meet others outside my usual social group.

The ‘Journey’

I arrived at the Grove Hotel just before the Escape officially started. I’m naturally a little shy and it usually takes me a few moments to adjust to a new group. A group of people were leaving to get lunch and it suddenly dawned on me that, as I hadn’t been to a Shine event before, I might be the only person to not know anyone. However, I was greeted with a friendly smile by Laura, who signed me in and pointed me in the direction of my room. I dropped off my bags and decided to find the lay of the land. As I walked down the corridor, I met another “Escapee” who said that she didn’t know anyone either so we decided to find coffee.

Robin

Robin during treatment

I soon realised that most people had met for the first time that day and that I was less of an outsider than I had first thought. As we sat down for coffee, we were handed bags with name badges and some notepads, leaflets and goodies including chocolate. There were now a few of us sat chatting in the warm conservatory looking out onto the garden. A few minutes in, Emma bounced into the room and introduced herself, welcoming each with a hug. I think she spotted my British awkwardness and apologised saying “sorry, but that’s how I roll; you’ll get used to me,” I had been in the building for about fifteen minutes and already felt like part of the team. Emma was followed by Ceinwen who identified with me as a “chemo buddy” as we’d had the same treatment.

Breaking Ice

After coffee, we headed to the main meeting room. Emma and Ceinwen (whom Emma helpfully introduced as ‘Kine-When’) quickly built a great rapport and the presentation was informal and engaging. They talked through the schedule, some ground rules and explained that the weekend might be emotional. We were also introduced to the support staff including a (very much in demand) psychologist and an on call nurse. In talking to the ‘peer supporters’ (young adults who have had cancer and have been on previous Escapes) throughout the weekend, it was clear that they were all easy to talk to and had a wealth of knowledge to offer. The activities for the first day were designed to help us get to know each other. At dinner-time, the tables were chosen for us at random which worked really well as we all quickly met and, by the end of the second day, everyone knew each other.

I surprised myself at how quickly I had settled in – within 24 hours, strangers had become friends. By the end of the day inappropriate jokes and cancer-related anecdotes capped a raucous evening

Day 2 – Calm before the storm

Yoga (which was optional), a first for me, kick started my morning. As a runner, I could see the value of the stretches and the relaxation techniques. The session was designed to cater for all abilities and I could feel the benefit at breakfast.

The day started with a myth-busting discussion – it was interesting to see that I was not alone in my ‘common knowledge’ and ‘tabloid fact’ scepticism. We were introduced to some useful online resources with which we could help inform our opinions.

The afternoon was a fairly intense discussion about the emotional strain that a diagnosis can have on us. There were some really emotive discussions around how we managed our personal feelings and those around us who were also affected. Listening to some of the conversations found me holding back tears on a number of occasions.

We went out for dinner which was held at a fine high street pizza establishment – a welcome break from the walls of the hotel and good to catch up with people in a neutral environment.

Day 3 – A Sea Change

After my second yoga experience, we quickly settled into a discussion around relationships. We talked about how we communicated with friends, family and partners. On top of our varying diagnoses and prognoses, our family lives were just as varied but sharing the host of struggles that we could all identify with was a liberating experience.

The lads in the group were in the minority, but I had a number of really engaging, open and frank conversations. It seems that we all had handled ourselves in a very similar way and talking through our coping strategies was both cathartic and enlightening.

After lunch we broke into separate groups, and I was glad to see that I was not the only bloke in the fertility discussion. Though outnumbered, I felt comfortable talking about this difficult subject in front of the group, and the discussion was well guided by a highly experienced specialist nurse. As one of my fellow male companions said later “we learned a lot about how… er it works” (followed by a huge laugh from the group)

Apart from a few optional activities, there was a fairly generous break before dinner so I decided to go and hide. I didn’t even get round to switching the TV on or pick up my book as planned before the emotions started pouring out of me. To help me get through the next few hours, I decided to write a poem:

A bottle

There’s a bottle within which all my tears go.
Emotion comes, I take one, stopper the jar, then stem the flow. 

It’s difficult to know where and when or why they come.
The swelling fear, the hide and run.

Feelings don’t frighten me, I know they’re there.
I’ve just learned to close them down.
I don’t reflect, I look forward.
I don’t regret, I learn.
I’m trying to live,
to work,
to achieve.

My experiences don’t define me.
I learn from my experiences and define myself around them.
I’m still learning.

I’m trying to live,
to work,
to love.

I’m realizing…
that soon,
if I don’t let them out,
the bottle might explode.

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Karaoke superstars

Before I knew it, it was time to head back for dinner which was followed by a pretty intense evening of karaoke. Audience participation was at a record breaking high, and some unexpected superstars arose from behind the curtain.

Hike and home

The event of the final day was the ‘Hengistbury Hike.’ We started with a talk from a fitness instructor whose specialism is working with cancer patients. As with all the speakers and contributors of the weekend, he was engaging and interesting – and even for a fitness convert like me, his approach was really interesting. The hike was well planned with different routes depending on ability and we spent most of the time chatting and taking in the beautiful scenery. The weather was exactly as expected (rainy and cold!), but refreshing and not too harsh on us. We returned for a de-briefing followed by a hugely emotional and huggy parting of our ways.

Group walk

2016 Escapees starting the Hengistbury Hike

The journey home was a blur – I had the radio on but didn’t hear it. I think my mind was spinning from all I had learned and the wonderful people I had met. The comments in our private online group over the following days have been a testament to the bonds we formed, and I’m very grateful to everyone for having shared part of themselves with me.

I would have no hesitation in recommending the Escape to other people. On top of a range of practical advice, I learned that talking about how I feel is not only important for my own recovery, it will help those around me.

Robin Taylor blogs at http://www.robinbtaylor.com

Life – but not as you knew it: Laughter as medicine!

Got a case of the January blahs? Here at Shine, we’ve been looking at ways that we can beat the dark, grey days and bring a bit of happiness into our lives, regardless of the challenges 2015 might bring.  Luckily for us, we found Mandy Riches of Grin and Tonic which uses Laughtercise (yes, you read that correctly!) to promote physical and psychological health.  Mandy understands cancer because she’s been there: diagnosed with Hodgkin’s lymphoma twice in her twenties, she was then diagnosed in 2011/2012 with breast cancer.  Yes, we know it sounds a bit weird but we also think it sounds like lots of fun so read on and visit her website for more information!


Mandy Riches

Three-time cancer superhero and laughtercise guru Mandy Riches

 

There’s something about one year ending and a new year beginning that I find unsettling. It’s often a time for self-reflection which brings a myriad of emotions, ranging from the optimism and excitement of new opportunities, to a longing to simply curl up under the duvet and hide from the world. Since I was first diagnosed with cancer over 20 years ago, I’ve often had an urgency to really ‘live’ life though I’ve found that this is a double-edged sword.

On the one hand, it contributes to the fact that I can look back on 2014 and feel incredibly proud at achieving what I describe as my crazy scary challenge: cycling from Edinburgh to London in five days for charity. For someone who often feels like a cancer factory, this accomplishment helped me to regain strength both mentally and physically. The absolute focus on following my heart and in achieving something that once seemed out of reach was invigorating.

The flip side is that this urgency sometimes completely and utterly overwhelms me – the need to make the new year count, the need to make every month, every week, every day, every second count. It can be exhausting and my New Year self-reflections could easily spiral into the January blues. However, as I lie snuggled up nursing my inevitable winter cold, I have decided instead that I will laugh in the face of the January blues using Laughtercise.

What is Laughtercise I hear you ask?

Laughtercise is based on the principles of laughter yoga, which combines laughter with deep breathing. When my good friend Stephanie Hill from Grin and Tonic heard about my third diagnosis of cancer, she felt powerless and wanted to find some way to help me and my family, so she engaged us in using laughter as an exercise (as opposed to laughing at comedy or jokes). With simple, fun exercises and some deep breathing your serotonin (the happy hormone) increases, the laughter becomes contagious. You feel more relaxed, less stressed, more energised. Like many, I found it a bit barmy at first and I could have easily discarded it as “I’m way too reserved for that kind of thing”. But by simply letting go a little and using techniques to anchor it into daily life, it was brilliant.

Mandy and her colleague, Steph

Mandy and her colleague, Steph

For most of my adult life, I’ve been dancing the tango with cancer: twice with Hodgkin’s lymphoma in the 1990s and then breast cancer in 2011/12. I was devastated to have cancer for a third time, and it hit me much harder emotionally. I don’t know if it was the optimism of youth that carried me through the first two, or the cumulative effect of ‘here we go again’. Perhaps there was even an element of the unfairness of the breast cancer being caused by the radiotherapy I received for the Hodgkin’s.

One way or another, I experienced an overwhelming sense of emotion. I found myself crying for no real reason, I couldn’t sleep and I’d often wake up with tears streaming down my face. I found it really difficult to articulate what was going on.  Mortality had smacked me in face again and at least some part of me felt smashed, whether that was my sense of myself and who I was, my loss of innocence, my view on time, my view on what next.

I never thought that Laughtercise would become such a useful tool, but it did, and continues to be so. It has helped me to feel more in control of my life at a point when it seemed like cancer had taken over everything and every thought. Physically, the act of laughing and the deep breathing also helped to release some of the tightness I felt in my chest following reconstruction for my bi-lateral mastectomy. It also helped me connect with my family and friends in a really meaningful way.  When you’re dealing with cancer, people don’t know if they are allowed to laugh around you.  It was easy for me to give ‘permission’ for them to laugh with me, and although it started as an exercise, it was contagious and incredibly powerful, helping them to relax and deal with my illness too.

I know it all sounds a bit mad, but honestly you have to try it!  I am passionate about bringing more laughter into the lives of as many people as possible, and together Steph and I have created a DVD called “Dealing with Cancer? Laughter Works”. January can be a tough time for many people, cancer or not. Whether you’re happy, sad, or just need a little pick me up, I’d encourage you to get out of bed, grab the next person you see, or simply look in the mirror and give it a good Ho Ho Ho. It’s infectious!

In addition to being a freelancer writer and running her own Customer Experience Consultancy, Mandy is now proud to be a Director of Laughter at Grin and Tonic.  

 

Life – but not as you knew it: No way back!

One of the things that no one tells you when you’re first diagnosed with cancer is that you’ll never be the same (and if they told you, you probably wouldn’t believe them!).  Whatever the outcome of diagnosis and treatment, many people feel changed.  This can be a disorienting feeling – after all, we just want to get back to normal, don’t we?

In our latest blog, Jen shares her thoughts on some of the good  and bad  changes that she’s experienced since her diagnosis a year ago.  Here at Shine we don’t always push “positive thinking” because – let’s be frank – there’s A LOT about cancer that just isn’t positive.  However, as Jen points out, “there’s nothing like a life threatening illness to highlight what’s truly important in life”.  It’s a shame we don’t often get this insight without the life threatening illness, but it’s still worth remembering!


Jen Hart

If I had the choice of never having had cancer and returning to the life I was living before, I most definitely would. The rollercoaster of a cancer diagnosis and treatment is a long, bumpy, and terrifying ride. It’s also one that does not end where it started. To quote the title of this blog series: it’s your life, but not as you knew it!

As I slowly accept a new version of me within my strange new world I am starting to appreciate the positive changes that have come about due to my ride on the cancer rollercoaster. I may have new limits but I also have new priorities, new perspectives, and new hopes and dreams.

Following my diagnosis last October, I took a stoic approach, gritted my teeth and readied myself for six months (Ha ha! This was my first naive mistake!) of gruelling treatment. I was determined that I would get through whatever I needed to, be cured, and then return to my normal life. I would plod on with living as if cancer had never happened (this was naïve mistake number 2!).

Almost all of my family and friends shared my naïve view, and why wouldn’t they? Unless you’ve had experience to the contrary it is a perfectly sensible view to hold.   Many times throughout my treatment I was reassured by well-meaning friends and family that it would soon be over and I would get back to normal. The concept seems laughable to me now, but for at least the first few months of treatment the thought of returning to a “normal” life kept me going. I was fiercely determined not to be “changed” by cancer. I did not need a brush with my own mortality to be taught to appreciate life thank you very much!

It’s very difficult to accept change when it is forced upon you so brutally. Initially it was the superficial, physical changes that were my focus and I was determined to return to exactly how I looked “before”, as soon as possible. At times it felt as if my entire identity was encapsulated in the way I looked. I think the focus on these superficial things stems from the fact there is absolutely nothing you can do about the non-superficial things that have been changed. The scars from surgery, the damaged nerves and muscles from chemotherapy and radiotherapy, the terrible memory and disrupted thinking process – it has been hard to accept these things as part of my new life.

As time has passed, however, I’ve had to slowly learn the art of acceptance rather than try to return to ‘normal’. I will never look like I did before and I will never feel like I did before but, you know what? That’s OK. I may be the same person but my experiences have shifted my life onto a completely new trajectory.

There are, of course, the physical changes that I have to learn to live with. I must accept that I may never regain the same level of fitness and health I enjoyed before and that there may be permanent damage done by treatment. I am learning to let go of the anger and bitterness that I sometimes feel about that. It’s easy to say “well at least I’m alive” but at times it’s difficult to feel that. And then there is the threat of a recurrence that all cancer “survivors” must learn to live with. I need to learn to supress the reflex to break out in a cold sweat every time I have a nagging pain or feel a lump or bump. I am assured it gets easier with time and I’m sure it will.

Looking past these more negative aspects of my changed new reality there is, however, a much stronger and overriding positive change. There’s nothing like a life threatening illness to highlight what’s truly important in life. I have been shown the true value of relationships and witnessed the best of humanity in the love and support I’ve had showered upon me. Small acts of kindness have meant so much. I hope that in my new life I can always remember how these small gestures have impacted upon me and pay the kindness forward. I know more about myself now than I did a year ago and I have an appreciation for aspects of my personality that I perhaps didn’t previously value or recognise. I am aware of how quickly ‘good health’ can be whisked away and I find joy in simply being able to walk or run in the sunshine. I try to focus on what I am doing more and think about the future less. Living in the moment is such a cliché but, for me, it has been directly correlated with peace and happiness. In my new, post-cancer life I have found a deeper appreciation of how I can create my own happiness, and I fully intend to create as much as possible.

Returning to ‘normal’ is no longer my goal. My new normal is pretty damn good. There’s no going back. And that’s OK.

Jennifer has just finished her treatment for breast cancer. She lives in Dorset with her husband and two daughters – and, with two others, runs Shine New Forest!