It’s Lymphoma Awareness Month – Meet Ceinwen!

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

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

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

When were you diagnosed and what with?

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

How did you find out you had cancer?

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

What did you think and feel when you were diagnosed?

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

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Ceinwen & her daughter today

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

How did the people around you react?

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

What treatment did you have?

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

How did you feel through treatment?

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

What happened after treatment finished?

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Monthly immunoglobulin infusion done at the hospital

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

Tell us about your work with Shine

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

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

What difference has Shine made to you?

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

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

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

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

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

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

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

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

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

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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.

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Robin during treatment

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

Breaking Ice

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

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

Day 2 – Calm before the storm

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

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

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

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

Day 3 – A Sea Change

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

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

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

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

A bottle

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

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

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

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

I’m trying to live,
to work,
to love.

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

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Karaoke superstars

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

Hike and home

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

Group walk

2016 Escapees starting the Hengistbury Hike

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

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

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

Life but not as you knew it: One new immune system and two birthdays

There are lots of different types of cancer and, increasingly, just as many different types of treatments.  While many people with ‘solid’ tumours receive surgery, radiotherapy and chemotherapy, blood cancers sometimes require a slightly different tack.  In our new blog, Helen shares her experience with a stem cell transplant for Hodgkin lymphoma and discusses how her vocabulary – as well as her health – have changed over the last few years. We’d love to know what you think about the blog so please get in touch by leaving a comment or tweeting us on @shinecancersupport.


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Helen in Australia in December 2014

Let’s just say that science wasn’t my strong point at school. Now I wish that I could go back to my biology teachers and confuse them with the words like ‘chimerism’ that are now part of my regular language. For all its unpleasantness, having a donor stem cell transplant at the age of 33 has given me more than just a wider vocabulary.

In September 2010, I had just got married, celebrated my 30th birthday and moved to beautiful Gloucestershire, ready to start a new life with my husband. I had been a primary school teacher in London and was keen to find a new job in the countryside. A few short months later, I was diagnosed with Hodgkin’s lymphoma and any ideas of an idyllic life were put on hold.

I had ABVD chemotherapy and radiotherapy and achieved remission. However, months later, the cancer returned. I had to have more intensive chemotherapy and was told that I would need a stem cell transplant.

I had heard of bone marrow transplants but wasn’t sure how they differed from stem cell transplants. It turns out that the process is the same; the only difference is where in the body the cells are taken from. I knew something about how transplants work; high dose chemotherapy is given to kill off immunity, then replaced by new stem cells in order to create a disease-free immune system. However, at this stage I did not know that there are two types of transplant – one that uses healthy stem cells ‘harvested’ from your own body (autologous) and one that uses stem cells from a donor (allogeneic). Because I hadn’t responded as hoped to the second round of chemotherapy, the decision was made for me to have a donor transplant.

To be a donor, someone must have a ‘matching’ tissue type. My sister was tested, but was not a match. My only hope was to rely on the worldwide database of people who are willing to donate their stem cells should someone need them. So here’s to my match – an anonymous man from Germany who selflessly donated his stem cells to me, a complete stranger in England! If he hadn’t signed up to the register, who knows where I would be now?

Once I learned more about what it involved, my mind was full of questions. How long would I be in hospital for? With no immune system I would have to stay in isolation; how would I cope? How long would it be before I could go back to work? How would we manage financially? Would I get Graft versus Host Disease (which is where the new cells are recognised as ‘foreign’ and rejected by the body)?

Realising that I would be spending a long time in my hospital room, I decided to make it feel as homely as possible. I decorated the walls with photos and inspiring quotations (laminated, of course, so that they could be cleaned every day!). Instead of the hospital pillow cases the nurses let me bring my own from home as long as they were changed daily. I brought in a selection of DVDs, a laptop loaded with games, plenty of books to read and my adult colouring books, which I find helpful to relieve stress.

Some days, the most that I could achieve was to have a shower, but I made sure that I did this every day as it helped me to stay motivated. I also read about and practised mindfulness techniques which I found invaluable for dealing with all that was happening. Fortunately the hospital I was in had Wifi, which meant that I could stay in touch with family and friends over Skype.

Helen Stem Cell

Helen’s new stem cells!

My new stem cells were given to me on 9th October 2013. I remember seeing them arrive by courier in a yellow bag and thinking that someone in the hospital was getting a pizza delivered! The process of receiving the cells was a bit of an anti-climax. It took around 40 minutes and was just like having a blood transfusion; the bag of blood cells was infused through my central line. The day that a transplant patient receives a new immune system is often seen as a new ‘birthday’. Apart from transplant patients only one other person has two birthdays a year and that’s the Queen!

After five and a half weeks, I left hospital. I still had to go for check-ups every week, partly so that the doctors could check on my ‘chimerism’. This refers to the percentage of donor cells in the blood and it is desirable after a transplant to be as close to 100% donor as possible. Although when I left hospital, my chimerism was good, by February 2014 it had gone down and I needed a ‘top up’ of my stem cells. This required an overnight stay in hospital but my chimerism has been going up ever since.

As soon as I was able, I went back to work in a Further Education college, a job I had started after my first remission. It was a change from my previous job but I enjoyed it. I visited Berlin, Spain, Hong Kong and Australia, all within the first year after leaving hospital. Almost a year and a half after my transplant I am having further treatment as some lymphoma has been found again in my body. However, because I have had a donor stem cell transplant, I can have another ‘top up’ of my new cells which, it is hoped, will get rid of the cancer for good.

I thought that moving to a different part of the country would make things harder to deal with, but it has actually helped me physically and emotionally because I could explore new places when I was well enough times during my treatments. Having so many changes in a short space of time showed me that I am adaptable and whenever I feel angry at having had to go through a stem cell transplant, I think of some of the things that I have been able to enjoy because of it: becoming a regular practitioner of mindfulness, going to four different countries in one year, having two birthdays and enjoying a new career path to name but a few!

Helen is a former primary school teacher now working as a Learning Support Assistant in a college of Further Education. She lives in Gloucestershire with her husband and Eric the cat.

You can register to donate your stem cells via Anthony Nolan, a charity devoted to saving the lives of people with blood cancer. 

Life – but not as you knew it: The importance of a cancer crew!

At Shine, we’ve always believed that there is a lot to be gained from being around others who just get what life with cancer is like.  We now run 11 networks across the UK which have men and women who have experienced a cancer diagnosis meeting up for coffee, drinks, dinner and occasionally some (very bad) bowling.  Once you’re diagnosed with cancer, many people feel like they’ve lost something; in our latest blog, Ellie Philipotts explores both the losses and gains that come with cancer and tells us why she thinks a cancer support network is so important.


Ellie Philpotts.

Our latest blogger – Ellie

 

Cancer, cancer, cancer. If you’re reading this, you can probably say you’ve been there, done that and got the t-shirt – but lost a number of other things in the process: hair, body parts, confidence, friends….

Going through all of this is almost second-nature to us Shiny people, but not to the average Joe, (which can seem like another term for ‘every person in the world but me’.)

I think there’s an irony in the fact that cancer itself is formed of millions of little cells going haywire, leading to what feels like millions of medical procedures to solve the problem and yet it’s one of the most isolating things a person can go through.  Despite the amount of people who’ve also had this diagnosis, when your own journey begins, it definitely doesn’t feel like millions of others know how you feel, either mentally or physically. What I’ve discovered though is that probably the biggest cancer perk (yes, they exist!) can be found in a new, post-cancer support system.

I was diagnosed with Hodgkin’s Lymphoma in 2011 when I was 15. Less than two months later, I went on my first ‘cancer trip’, to London with Teenage Cancer Trust. We completed a music workshop backstage at the Royal Albert Hall; met Roger Daltrey and saw The Who perform in aid of the charity. The next day was full of exploring Camden and realising how lucky I was to have been given such a great break from chemo and steroids.

From then on, during the rest of treatment and beyond, I’ve been heavily involved with Teenage Cancer Trust. My Birmingham Children’s Hospital group went on social events like meals every month and trips to London; sailing with the Ellen MacArthur Trust, two incredible Find Your Sense of Tumours; Look Good Feel Better days on the ward; Clothes Show Live tours…the list goes on!

In September 2014, I moved away from home to study English Literature and Journalism at Cardiff University. Obviously this was a big change – leaving the life I’d always known for a four hour round-trip away. Cancer barges into your life without warning, but after a while it becomes a part of your identity, so although by this stage I was no longer a patient, I was still leaving my hospital and support group at home. I’m not someone who wanted to forget about cancer as soon as I finished treatment. Instead, I’ve really liked being involved with different charities, and although my life definitely isn’t cancer-orientated now, it is nice to have my security blanket there.

In January 2015, I attended my first meet-up with Shine Cancer Support, this time in my new home of Cardiff. I heard about Shine Cardiff randomly after noticing Rhian, Cardiff’s co-founder, featured on the Humans of Cardiff Facebook page. I soon went along to a meet up at a local café which was lovely.

Shine Cardiff

Shine bucket collection on the streets of Cardiff

Despite being the youngest person in the Cardiff network (as well as the longest off treatment), I’m so happy I joined and I still find that I can relate to the others’ issues. More importantly, we definitely don’t just talk about cancer and we’ve had a lot of fun chats during our Friday ciders, Sunday coffees and Cardiff Bay dinners!

And that’s why I think Shine is so important: despite the different ages and life stages (some are married with children; I’m a student; others were diagnosed last month) we all have one big common ground and understand how it feels to have cancer. Verification that you’re not alone in feeling the way you do; a chance to make new friends; and bonding over past experiences are why cancer support groups are so important. Cancer is the reason these groups come together, but the laughter and other bits of conversation are also often one of the best ways of taking your mind off the cancer. Of course, our other friends are fantastic, but they can’t quite understand what we’re going through, because they haven’t been there themselves. The Shine crew is different! We can lose a lot through cancer – but a support group means you gain, gain, gain – friendship, happy memories, giggles, and probably weight – but weight gain from biscuits over a natter is surely preferable to weight gain from steroids, right?!

Ellie Philpotts is an aspiring journalist and student at Cardiff University. You can keep up with her on her blog

What happens at the Escape?

Between Jan 29th and February 1st, Shine ran our second Great Escape. For those of you who don’t know, the Escape is one of our best events – a three and a half day get together for young adults with cancer. We take over a hotel, we hang out, we talk about all the stuff we don’t usually get to talk about (like dating, depression and infertility) – and this year we hit the karaoke hard. You can see a video of our 2014 Escape here.

One of our Escapees, Minh, has written a bit about his experience at the Escape. Take a read – and get ready to sign up for Great Escape 2016!

2015 Escapee Minh Ly

2015 Escapee Minh Ly

The Lead Up

I began writing this as I sat on the train to head down Bournemouth for the Shine “Great Escape”. I’ve been in remission coming up to 8 years now and have pushed it to the back of my mind quite well. I can’t help but feel scared about spending four days talking and hearing about the subject cancer. I fear bringing up the past.

Why then, did I decide to go on the Escape? Well the fear didn’t really occur to me when I applied! Looking back on my application, I put that “I would like to spend time with people who have and are going through similar things that I’ve been through, particularly in my age range”.

I’d been to a couple of the Shine meet ups in London where I had met a few of the other “Escapees”. To help everyone get to know one another a little, we were all asked for a photo and a few paragraphs about ourselves to circulate. And to get us talking, a private group on Facebook was set up for us. It seems that I wasn’t the only one feeling slightly nervous.

I wasn’t sure what to expect, but with clear skies from the window of the train, I hope for it to stay like this for the walk on the final day!

The Escape

“What happens at the Escape, stays at the Escape!” – an Escapee, 2015

The whole experience and organising was great! Shine knows not to jump into the heavy topics on the first day, with everyone tired from travelling and new to one another, so they ease us in with introductions, let us get to know each other, have us do magazine cutting collages, and share our first dinner together. It was a very warm welcome.

The following days, a number of different sessions were run, some for everyone and the others in parallel, allowing the Escapees to choose the sessions that was more relevant to them. I’ve only been to the standard conference-type events, where you sit in an hour long session just to hear a couple of people talk, so that was what I thought the Escape would be like – but it wasn’t. Instead, there would be a short talk on a topic and then some form of interaction, whether that was breaking away into smaller groups for a bit of discussion before feeding back to the group as a whole or individually.

For me the topics were interesting, thought provoking and sometimes hard-hitting.  I particularly found myself nodding (well inside my head!) to a lot that was said in a session about Post-Traumatic Stress Disorder (PTSD). I’ve bottled a lot up and not really spoken about cancer until it’s too late and I have some form of breakdown. This session told me that I’m not the only one having trouble after remission and also that this can happen not just straight after treatment but many years later.

There was a lot to take in over the four days and I didn’t get time to process it all during the time away. There is so much going on, but its not always full-on; there are plenty of tea and coffee breaks (much cake included!) and you get free time to explore Bournemouth, the beach (5 minutes away), chat with others or just relax in your room. In the evenings, to take your mind off it all you could play a bit of bingo (with a variety of alternate bingo number calls) or partake/listen to the rest of the gang hitting up the mic and doing a bit of karaoke.

There was a sadness to be leaving the others at the end of the Escape, but I also felt ready to go back to my life, and ready to take action on the next steps.

The end of the Escape, but the start of moving on.

During the Escape, I thought about what I was looking for, why I came to the Escape and what I really wanted. This kept changing from session to session, day to day. After the first day I was sceptical about whether I would get anything out of the Escape as my mind seemed so lost and confused.

So what did I get? Firstly, I got the realisation that I need to talk about what’s happened to me, to relive it and stop burying it in the back of my head, whether that be by writing a personal diary, blogging ,or talking to a counsellor. I will never be able to get rid of the memories of being ill, but everything I learned at the Escape will help to dampen the effect it has on me when it suddenly crops up in my head.

Second, in the other Escapees, I’ve found friends who understand and who I can talk to when it feels like there is no one. Everyone is very supportive of one another and even after the Escape that has continued online.

Overall I feel good! I’ve had a bit of weight off my shoulders and though I’m not sure how long this feeling will last, I now know what needs to be done.  I think this is the first time that I’ve been in a positive mind-set about my cancer since I got into remission.

What people get out of the Escape will differ depending on their experience, but one thing is for sure: you will meet a fantastic set of people. The Escape was full of laughs (and some tears) as well as fun, and amazing people. It’s something I needed and something I will never forget. Thanks Shine and big hugs to the Escapees of 2015!

Minh Ly is a member of Shine’s London network.  He was treated for lymphoma 8 years ago and is in remission.

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

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


Mandy Riches

Three-time cancer superhero and laughtercise guru Mandy Riches

 

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

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

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

What is Laughtercise I hear you ask?

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

Mandy and her colleague, Steph

Mandy and her colleague, Steph

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

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

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

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

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