Improving treatment and support for young adults with cancer in the UK and Europe

What a full on weekend!!


Jon, Shine’s Fundraising & Comms Officer represented Shine at YCE’s Annual Meeting together with Rachel, one of our fabulous Network Leaders!

Together with Rachel, Shine’s North East network leader, I’ve recently returned from Youth Cancer Europe’s Annual Meeting in Vilnius, Lithuania!! We were so grateful to have met everyone and to have been a part of all of the important discussions that were held.

To be honest, I was very nervous beforehand about going…with my dodgy eyesight I’m not the most confident traveller and I wondered how my anxiety and fatigue would hold out. I find meeting others who’ve been affected by cancer to be really helpful, but big events can drain my steroid induced energy (Shine Camp and the Great Escape were amazing but I regularly had to pull back as my symptoms hit home). My friends are used to me having to take timeout but at the meeting I hoped I’d be able to contribute as much as possible, represent Shine, and bring back the expertise that was shared.

YCE’s website outlines their aims:

“Together we can help shape European policy, collaborate in and promote research, fight for better access to care, for better treatments, better conditions and help fix disparities that exist across Europe for young people fighting cancer.”

And they have a great tag line too: “Giving patients and survivors a voice in Europe”.

youth cancer europe

Inspiring speakers at YCE’s meeting

At first, I wasn’t sure what issues young cancer patients in Europe face, or what disparities there are between countries, but the weekend proved a crash course in information, and greatly improved my understanding of the importance of policymaking too.

After cancer in my early 20s and through my work at Shine I’ve become well aware of the need for care to be tailored more to the lifestyle of young adults. I had some idea how government and industry policy influenced care, but at the meeting I was shocked to hear some of the issues that people faced getting access to any care, let alone care tailored to their age! It was inspiring to hear from the organisations working to support younger patients in countries that are still developing systems to reflect young people’s needs.

Many people at YCE were first diagnosed as children or teenagers and many of them are still suffering the impact as young adults. The kind of issues that we explored together are issues I only started going through in my late 20s – but that I’m still struggling with 10 years later. Things like anxiety and living with uncertainty, living with the after-affects of treatment, dating when most of my friends are already well into stable partnerships, the thought of children when everyone around me already has them, and trying to get a stable career when friends have been in theirs for years! Being at the meeting really made me see how the cancer care pathway has to support people as they leave childhood/teenage years, as well as people first diagnosed early in adulthood! As the demands of life change the impact of cancer changes too.

working after cancer

Chatting through issues about working after cancer in a breakout session

The disparities between countries in terms of access to care became very clear over the course of the weekend, as did some of the practices that were working most effectively. Being at the meeting also made me realise how fortunate we are in the UK to have the NHS. Of course, many of us, including myself, have experienced problems with how NHS services work for younger people and know that there’s room for improvement in terms of specific types of care and in coping with the after effects of cancer. But at the meeting I heard examples of countries where cancer patients have to raise funds for each scan, as well as any treatment that may follow. Processes of diagnosis and referral are often not as efficient as they could be and patients often need to research treatments themselves. While there may be times when we have to research our conditions, fight for them to be tested or argue to access to certain treatments, for the most part we do trust our NHS professionals to make decisions in our best interest.

It doesn’t matter how or when we got here as young adults who are living with cancer, all of us need support to help us live as normal lives as possible. People who haven’t felt their bodies failing them due to cancer may find this difficult to understand. Everyone faces tough things growing up, but a serious illness adds another dimension. It makes it more difficult to live that “normal” life that all your friends appear to be living.


Prioritisation session for the weekend

One thing the weekend helped me to realise is that change doesn’t need to be either local or national but that together (there were 23 countries represented at the meeting), we can create bigger and more meaningful movement for all. In order for the needs of young adults to be met, we need to improve how we communicate about them to decision-makers. We also need a solid understanding of the policies in our own countries that shape access to treatment and funding for research and new therapies.

As someone who’s had a survivable cancer, I feel a sense of responsibility to increase

young adults with cancer

It wasn’t all work! Rachel takes in the view with a glass of wine!

awareness of what I have experienced so that others going through it in the future can have care that reflects their stage in life. Working together with YCE will allow Shine and the other participants to better examine and share practices, support others, and build a voice so that we can have a say about decisions made for us. Cancer patients have power and, if we are knowledgeable enough about how health systems work, we can speak on behalf of the 210,000 young adults currently living with and beyond cancer in the UK, to influence those decisions.

Jonathan is Shine’s Fundraising and Communications Officer. Why not sign up to this blog (see the button at the top!) or follow us on Instagram @shinecancersupport


It’s Lymphoma Awareness Month – Meet Ceinwen!

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


Ceinwen (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


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?


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)


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.


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. 

breast cancer

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

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


Guest blogger Rosie Hellawell

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


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


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


NED: No Evidence of Disease

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


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

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


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


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

The opportunity to climb Mount Kilimanjaro for Shine Cancer Support has come at the perfect time for me and has given me a focus to get me through my treatment and out beyond the other side. Not only will the trek itself be a huge physical and mental challenge, the fundraising and training will include targets to be met along the way. This will help with my recovery and will give me back some more of that lost sense of purpose and control.fb_img_1472033674460


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


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

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

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

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.


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!


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


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


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



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 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.


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

Coping with anxiety after a cancer diagnosis

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

Coach Emily Hodge

Coach Emily Hodge

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

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

Recognise anxiety

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

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

Talk about anxiety

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

Slow down and breathe

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

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

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

Recognise when we last felt less anxious

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

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

Work out what you love 

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

Get outside

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

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

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


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


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

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

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