Wellbeing and wildlife: how nature helps me feel better

In this guest blog post, Shine member Hazel writes about how getting outside helped her to cope with treatment for cervical cancer.


It was 2pm. I’d gotten out of bed at around midday, but I hadn’t bothered to get dressed yet or even brush my teeth. The cloudless blue sky and warming sunlight beckoned me to leave the house, but they were hidden behind my tightly shut window blinds. I sighed, disappointed in myself for not making the most of the glorious weather, and wrote it off as ‘one of those days’.

As the daylight faded I told myself tomorrow would be different. I set my alarm, laid out my clothes and put my binoculars and camera into my backpack. Tomorrow I would go out for a walk.

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Hazel on the chemo ward

After being diagnosed with cervical cancer in November I underwent four rounds of chemotherapy, twenty-five fractions of pelvic radiotherapy and three doses of brachytherapy (internal radiotherapy). After finishing treatment in January the reality of the whole experience sunk in and early-onset menopause began. Anxiety, hot flushes and night sweats, coupled with aches in my pelvis, often make it challenging to get a good night’s sleep. These conditions give me go-to excuses for not leaving the house, especially on gloomy, cold days, despite knowing that getting out of the house makes me feel so much happier. Listening to birdsong, looking for wildflowers and immersing myself in nature are the things that help me forget about cancer and just enjoy being alive.

The next morning, true to my intentions, I headed out to one of my favourite local nature reserves. It was a beautiful day again. I had another chance to get out and feel better. I walked under a canopy of huge beech trees with their smooth grey trunks flanked by stocky holly trees, listening out for birdsong as I went. Among the various tweets and chirps cascading around the woodland my attention was caught by a series of loud, high pitched ‘pip-pip’ calls. Over the past few years I’ve made an effort to learn the songs and calls of birds (you don’t need to know which bird is singing to appreciate the wonderful sound though, of course!). I recognised the ‘pips’ as being the call of a nuthatch: a beautiful little bird with blue-grey feathers on their backs, pale peach plumage on their bellies and a striking black stripe running across their eye. I looked up into the trees, scanning the branches in the direction of the sound. I soon spotted not one but two nuthatches, a male and a female, using their beaks to prise bark off a silver birch tree in which they were busily hopping from branch to branch. I stood perfectly still, trying not to disturb them.

I get so much joy from watching wild animals going about their daily lives, gaining insight into their behaviour. There’s no space for anxiety about the recurrence of cancer or worrying about the future in those moments because my full concentration is given to the bird, butterfly or other natural wonder that I am in the presence of. After a few minutes one of the nuthatches flew over to a tree, clinging to the bark with its powerfully clawed little feet. It cautiously paused to look at me before it began stuffing the bark it had collected into an old woodpecker-made hole in the tree’s trunk. They were building a nest! I’d passed that hole-laden tree many times and wondered what creatures might make use of it; now I was witnessing something I had never seen before and it felt like such a privilege. It brought a smile to my face which lasted the rest of that day, and returns now as I recall the details of the encounter to write about it. This is the kind of moment I need to remind myself of when I am struggling for the motivation to get out of bed!

More recently, after the familiar difficulty of getting an appointment at my GP surgery, a sympathetic doctor prescribed me an HRT drug. I could have hugged him, I was so overjoyed at the thought of getting some undisturbed, hot-flush-free sleep. Unfortunately, upon consulting every pharmacist in the locality, I found the drug was unavailable with no timescale for when it might be back on the shelves. In my despair I sat and cried in my car.

I knew I didn’t want to be out walking on reserves looking and feeling as I did, so I sought solace among the plants and wildlife at home in the garden. Gazing into the pond I watched smooth newts: males with their striking, spotted breeding season colouration, and sand-coloured females. Their tails quivered, propelling them to the surface. They paused, suspended just long enough to take a gulp of air before descending back to the bottom of the pond, leaving a trail of tiny bubbles. There were also dragonfly nymphs, formidable predators in this tiny underwater world, sitting motionless and deadly. Some of our largest dragonflies spend up to four years in this form before crawling up the stems of plants and emerging as the beautiful adult winged insects (which live for a maximum of only seven months). With very little effort, my sadness and frustration had diminished, replaced by the childlike wonderment of watching newts and dragonfly nymphs.

At sea

Hazel working at sea as a wildlife guide in 2017,
specialising in whales, dolphins, porpoises and seabirds

Of course we are all entitled to days when we just don’t feel like going out, getting dressed or getting out of bed, and there is no shame in that. Our bodies need rest and time to heal. Comfy clothes, chocolate and binge-watching your favourite TV series can be hugely therapeutic! For me though, there’s nothing like getting outside, even if just for half an hour, to seek out wildlife encounters and marvel at nature. In those magical moments my cancer might as well not exist; I don’t give it a thought because I am consumed in marvelling at the beauty of the natural world – and I feel so much better for it.

 

Living with incurable cancer: talking to my children

In this guest blog post, Shine community member Beth writes about her story of living with incurable bowel cancer, and shares her experiences of talking about her illness with her young children.


 

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Meet Beth

My name is Beth, and I was diagnosed with bowel cancer in 2016 at the age of 37. I was working as a Paralegal, and about to start the final year of my law degree. This diagnosis could not have come at a worse time, just when I was finally pursuing the career of my dreams and becoming a solicitor. However, it was not my career that came to mind, but my family: my husband and my babies.

In 2017 things went from bad to worse. I was told that the cancer had spread to my lungs and was now incurable. I was given six months to three years to live. My son Joseph was nine at the time, and my daughter Abigail was just seven. How was I going to tell them? What was I going to tell them? How much should I tell them? How much would they understand? How could I make sure I was always a part of their lives? What could I put in place for them emotionally for when I was gone?

I had a lot of questions – mostly about my kids, not medical questions for the doctors. Who to ask? I found charity leaflets about talking to children about cancer, but they were very generic; I felt that there was a lack of support for parents and children in this situation. I wanted to speak to child psychologists, parents who had been through this, adults who had lost a parent as a child – anyone who could give me insight into the best things to do for my children. in the end I found help, ideas and support from my followers on my Facebook page. I asked if anyone had lost a parent at a young age and if so, what had helped them. Then the ideas came flooding in.

When I was first told I had cancer, we told the kids that I had some bad cells and the doctors were going to take them out, meaning that I would be in hospital for a bit. After my initial operation, we explained that I would need to have some medicine to kill off any tiny bad cells that the doctors could not see and help prevent any more bad cells growing. We explained that the medicine might make me feel ill. The progression of my cancer meant that I needed to break the news that the bad cells were back, the doctors could not cure me and – the bit I still needed to get my head around – I was going to die (but we had no idea when).

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Beth and her family

I talked to Richard, my husband. We planned to sit the children down and talk as a family, but not about time frames. Unfortunately, we never did get to sit down and do this. Life has a funny way of taking these things out of your hands.

I did tell Joseph and Abigail, but it was one afternoon when I was snuggled up on the sofa watching TV with them. An advert about cancer came on and Joseph turned to me and said ‘you had cancer didn’t you, Mummy? But you don’t have it anymore.’ My heart sank. We had never used the ‘cancer’ word, but he knew. Yet that was not what got me. Yes, I was going to have to shatter their world, and it would have to be now because I could not lie to them. The conversation went something like this:

 

Me: Well, you know that medicine to try and stop it coming back?

J&A in unison: Yes, Mummy.

Me: It looks like the medicine didn’t work as well as we thought, and I do still have cancer.

A: But Mummy, cancer can kill people.

J: But the doctors will make Mummy better, Abi.

Me: Unfortunately, the doctors can’t cure me, but they are going to do whatever they can to keep me here with you for as long as possible.

A: Are you going to die, Mummy?

Me: We all die one day, but I will probably die sooner than we would like. You know that if there is anything you want to ask me, you can. We can talk about anything.

There were lots of tears and cuddles, but oddly no questions – well, not then. A few weeks later my daughter, who is very matter-of-fact, asked ‘Mummy, will you last until Christmas?’. I am still not sure if she was more concerned about her presents – the man in a red suit does not get all the credit in our house…!

Both children made us promise that we would tell them whenever we got any new information. Joseph wanted to know about scan results and treatments. They seemed reassured by being included in what was going on. Just over a year on, we still have no idea how long I have left, but we take each day as it comes, and do everything we can to make as many memories together as possible.

We talked about making memory boxes, something they would have to keep their memories of me and our lives together as fresh as possible. The children put things into their boxes that remind them of something we have done together. It could be a photo of us together, anything that means something to them. I hope these boxes will help them to connect to me through physical things they can hold, touch, see, and smell.

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Dreaming about holidays

I am also doing things that the children do not know about: for example, I have written their birthday cards all the way up to the age of 21. This was tough and I cried a lot, but it was important to me. I set up an email address for each of them and I send them emails. I include a summary of something we have done together, what I enjoyed most, and a picture or two. I bought some books that ask questions about my life, and about their lives. I am in the process of completing these books and trying to answer all the questions.

I plan on recording videos and writing letters for special occasions. My husband can give them if he feels appropriate. The most important thing, though, is to be there for them right now and make the most of the time we do have together.

I am currently on a holiday booking spree…

 

You can learn more about Beth and get in touch with her via her blog, Facebook page, or Instagram/Twitter: @bowelwarrior. 

If you would like more support about talking to children about cancer, you can…

 

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.

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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!

 

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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.

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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!

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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!


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Stephanie with son Theo

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

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

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

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

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

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

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

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

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

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


Thinking of trying yoga after cancer?

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

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

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

Yoga is yoga, right?

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

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

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

Starting Slow

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

How do I find a slow class?

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

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

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

What do I wear?

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

Getting to the first class early

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

Do I need to do all the poses?

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

Giving it another go

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

Ask for Recommendations

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

 

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. 

Bowel cancer and talking sh*t!

“So, you’re fine now, right?”

Ah, the question that often gets asked when you tell people your cancer woes! And the thing is, it’s usually asked with the best of intentions. Your friends and acquaintances want you to be fine – but ‘fine’ can mean very different things once your body has been through cancer treatment.

In our latest blog, we are literally talking sh*t!  Our writer, Pippa, shares her experiences of a bowel cancer diagnosis and treatment in her early 30s and explains what the ‘new normal’ can feel like once your insides have been through the wringer. Having trouble explaining to people what your life is like now? Please feel free to share with others and, as always, let us know what you think.


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Pippa, during treatment

We live in a country where people are embarrassed to talk about their bodily functions, particularly their bowel movements. We rarely talk about them with our friends and family (you know you have a close friend if you do!) and we especially don’t like to talk about them with strangers, even doctors. This inability to talk about bowel movements is undoubtedly putting lives at risk and it almost cost me my life.

Bowel cancer is the third most common cancer in both women and men in the UK, and the second most common cause of cancer death in the UK, after lung cancer. Like many cancers, bowel cancer is more common in older people and screening is offered for those who are 60 or older. However, there are quite a few of us who are considerably younger who have been diagnosed with bowel cancer. As screening is only available to those who are older (and even then, it isn’t 100% reliable) you need to be aware of the symptoms of bowel cancer and talk to someone, like your GP, if you are experiencing them.

Before I was diagnosed, I experienced both a change in bowel habits and blood in my stools. These symptoms coincided with starting a new job and I put them down to stress. I was also embarrassed and didn’t want to talk to my doctor about it. I finally went to my GP fifteen months later. What finally convinced me to go? Confiding in my mum and one of my sisters. They were adamant I went to the doctor and it was actually much easier than I thought it would be to speak to my GP about poo! She referred me immediately for a colonoscopy, which is how my bowel cancer was discovered.

When you’re diagnosed with bowel cancer your life will forever revolve around poo, a subject that no-one wants to discuss! During treatment your bowels take a battering and a lot of people have a stoma (temporary or permanent) which brings its own poo challenges. I never imagined my life would involve waking up in the middle of the night and feeling a warm liquid all over my abdomen -and that liquid turning out to be poo from a stoma bag leak. Equally memorable was the occasion, soon after my operation, when I didn’t have a firm enough grip on my stoma bag as I was trying to empty it. Instead of emptying a very liquid poo into the toilet, it went all over the seat, my clothes and the floor – in fact, it went everywhere other than the toilet bowl. Happy times!

Being diagnosed with bowel cancer means you very quickly have to get over any qualms you might have had about talking about poo. Not only do you get used to crowds of people looking at or up your backside, but every appointment with consultants involves discussing your bowel movements.

Even once treatment is over, people rarely return to “normal” bowel function. The consultants like to refer to the period post-treatment as “getting used to your new normal”. For a lot of people, the final part of their treatment is having a temporary stoma reversed, which is when the bowel is reconnected for the first time post-treatment. A section of bowel will have been removed and the bowel that remains will have been affected by other treatments like chemo and radiotherapy. As a result, the speed at which poo moves through your bowel, as well as your bowel’s reaction to food and environmental stresses, will have changed. It is not uncommon post-surgery to spend a considerable amount of time on the toilet. Not only do you poo a lot, but it can also take a considerable time to fully empty your bowels. Challenges include feeling like you need to do a poo but not being able to, going to the loo, cleaning yourself up and then immediately needing to go again (referred to as clustering). No one understands the pure joy of passing a single normal poo until you have had bowel cancer!

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A post-treatment Pippa

These challenges are all a pain when you’re at home but they present even greater challenges when you’re out of the house. Prior to being diagnosed with cancer I tried to never do a poo outside of my own bathroom at home. Post-cancer, that is impossible. In the early stages post-treatment I didn’t like to be far from a toilet because if I needed to go, I had a very short period of time in which I could hold onto my bowel. Please don’t judge if you see a person who looks “perfectly normal” rushing into a disabled toilet. There are a number of medical conditions that mean that people need urgent access to a toilet and until you have experienced incontinence you can’t fully understand how embarrassing and horrible that is. If all other toilets are busy, the disabled toilets can be your only option to avoid an accident. Disabled toilets also provide more space to move around. When you have a stoma, you need that additional room to be able to empty your bag or to replace the bag if you’re unlucky enough to have a bag leak while you are out and about.

It can be very isolating to deal with the after effects of bowel cancer and the treatments. Thanks to Shine I have met a number of fellow “Bowelies” with whom I can have frank chats about poo and all of the other shit that comes with bowel cancer!

I am really passionate about educating people about the symptoms of bowel cancer and getting them talking about their bowel habits more. People can literally die from embarrassment and that’s not right.

Pippa Woodward-Smith is 34 and lives in Southampton. You can meet others like Pippa at our upcoming Shine Connect conference on 23rd April in London.

 

 

10 ways to help a friend coping with cancer

We often post articles on Twitter and Facebook about what to say to a friend or family member who has cancer, or how you might help them. We’ve also noticed that these often get a huge number of hits! That got us wondering how the members of our growing Shine community have been helped by family and friends when they’ve been ill – so we asked them! We got some great responses and we’ve summarised them below. Have a friend in need? Take a look below and see if we can inspire you!


Message1. Let them know you’re thinking of them

“One of my friends sent me a card every week that I was in the hospital – and I was in there for a long time.  It was so nice to receive a surprise in the mail and to hear all her news.  I’m not sure she knows how much it meant to me but I’ve kept all the cards as a reminder of what a great friend she is”.

When you’re ill, sometimes just knowing that you’re still part of the land of the living is all you need. A text, a card, a phone call – no matter how brief – can make a huge difference to someone who hasn’t been out and about much, especially if you’re clear that you don’t expect a reply.  Being ill can be very lonely so knowing that your friends and family are still thinking of you can make a huge difference.

2. Cook

“A friend bought 12 homemade freezer meals at two separate points during chemo. Even though I didn’t feel like eating most of the time at least I knew there was something quick, easy and on hand for my husband and daughter. I was very touched at her kindness and effort”.

If you’re a whizz icookn the kitchen, there’s nothing quite like a homemade meal to perk up someone who isn’t feeling great. And even if they don’t feel like eating because treatment has done a number on their appetite, you might be easing their stress by making sure other members of their family have something quick and easy to eat when the hunger pangs hit.

3. Clean

cleaningNot big on cooking? How about cleaning? A lot of our Shine members mentioned that they’d had friends who had popped in to clean the bathroom and kitchen, or put fresh sheets on the bed (and do the laundry) while they flaked out in front of the tv.  There’s nothing quite like clean sheets and a nice fresh towel – and it doesn’t take very long either!

4. Hang out

“For me, I was happy just to have people to keep me company. I think as a young lad people don’t know what to say and some people found it easier to avoid me.  I was happiest when people just came round and played computer games or chatted, especially when I couldn’t do much else beyond letting them in!”

super-1138462_1920Your mate may not be up for a heavy night down the pub, but heading over to his or hers with a movie, a computer game or even a pack of cards can really boost someone’s spirits. Something that doesn’t require a lot of mental or physical energy – like hanging on the sofa – but keeps them involved in the world around them is often really appreciated.

 

 

5. Get them out and about

“I went to Glastonbury festival after my treatment and all my friends had to take it in turn to carry all my belongings and helping me hobble around. I felt guilty about ruining their fun, but in reality I genuinely felt they were happy to have me there.  This reassurance was enough for me.”

We get it – being around really sick people can be scary. But helping a friend by taking them out, even if they’re going to need extra support, can help them feel like they’re still participating in all the things that they should be doing.  Keep in mind that they might not be able to walk long distances or stay out late, but if you can pick them up and drive them to a restaurant, or help them carry their stuff without making them feel bad, you’re more than half way to making their day!

6. Entertain the kids

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Let’s face it, kids can be exhausting at the best of times. If your friend has little ones, why not take them out for an afternoon or come over and cook them dinner while your friend has a nap? If they’re old enough, an afternoon movie or a trip to the park could give your friend a much needed break.  Or invite your friend and the kids over. You entertain them while your friend chills out with a cup of tea!

7. Head to the hospital

Something that everyone with cancer knows is that it’s time consuming – and hospital appointments can take ages.  If your friend is spending more time with the nurses and doctors than his/her mates, why not offer to keep them company? Ask if they’d like someone to take them to the hospital, pick them up, or hang out in between.  Having someone to gossip to can be a great distraction from the blood tests, scans and doctor chats.

8. Walk their dog

12376834_10156672952605263_2785600398398241687_nDoes your friend have a pooch? Why not ask if you can help walk the dog a few times a week? If your friend is happy for you to do it, see if you can get a few other friends together and organise a walking roster. On a good day, your friend might just want company for the walk. On a bad day they’ll be glad to have someone do the walking (and poo scooping!).

9. Organise a treat

“One of the most helpful things was planning something nice for my husband and I to do or go for a treat on the week before my next chemo. These did not cost much or sometimes nothing at all but it was something to focus on in the rotten days”.

“My friends always organised a get together on “chemo eve”, which was lovely.”

Cancer can be expensive! Not only are you missing work, but you’re spending your money heading to and from the hospital, on parking charges, and on extra blankets and heating to keep you warm. If you’re looking for a simple way to cheer someone up, why not plan a night out to the cinema or a comedy show? Book tickets when you know they’re free and either take them yourself or organise for others to go with them. (One minor note of caution: if you can, check if there’s cancer in the movie at all. You’d be surprised how many people in movies die of cancer. It’s not what you need when you’re going through treatment!).

10. Help them celebrate

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Having the energy for Christmas, Easter or a birthday can be tough when you’re coping with a cancer diagnosis.  Does your friend need help buying a tree or getting the decorations out? It can be hard for people to know what they need but asking specifically how their planning for a holiday is coming can open up whole new possibilities for help! Buy the Easter eggs, plan the hunt, decorate the tree, light the candles, buy the cake….the options are practically endless.

Got more ideas? What have we missed? Let us know! Comment below or Tweet us @shinecancersupp