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!

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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.

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Guest blogger Rosie Hellawell

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

Desires

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.

Reality

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

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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.

Everyday

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

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!):

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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

Motivation

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.

Statistics

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.

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

Shine Camp 2014!

 

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In early August we held our 5th Shine Camp – it’s taken us this long to recover and write about it!

Shine Camp is a weekend of camping with friends and families in the beautiful Dorset countryside. It gives young adults living with cancer a chance to relax and connect with other people, friends and family members that have similar experiences – and it’s great fun too!

This year we had nearly 100 people at camp and still had plenty of space in our fantastic private field at Norden Farm campsite near Corfe Castle. (Check them out if you’re looking for a great camping location!)

shine camp marqueeOur fantastic marquee, courtesy of Marqco Marquees went up on a slightly grey Friday morning and proved a great shelter from the teeny tiny bit of rain we had on the Friday evening and Saturday morning.  It also looked great at night with the colour changing light show and was the perfect place for everyone to congregate over food and drinks and to hang out for a chat.

The Friday night of Shine camp is always a ‘bring and share’ supper and once everyone has decided where to pitch and put their tents up (with varying degrees of success!) we all relaxed around the marquee.  We tucked into a feast of homemade bread and cakes, salads, quiche and all round proper picnic food! Yummy!

Saturday morning we had some pretty poor weather but the sun eventually came out and we had beautiful weather for the rest of the weekend .  Clever campers packed Wellies and sun-cream!

We went from this....

We went from this….

to this - in one hour!!

to this – in one hour!!

We never really have a schedule for Shine camp – those who come can choose to hang around at the campsite or go off out for the day with friends or family.  The only part we ask people to stick around for is the group meal on Saturday night.  With a fabulous hog roast and veggie BBQ, no one took any persuading!!

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We also share breakfast in the mornings if you’re up and about when the bacon and eggs are getting cooked!  This year we had a special Sunday breakfast of Canadian pancakes courtesy of our resident Canadian Ceinwen! (Thanks Cein!)

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Jeanette makes the bacon butties!

This year we also had our first ever best dressed tent competition and they all looked great!  The deserving winners were the Hart family whose home-made ‘under the sea’ theme stole the show in our Facebook vote!

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The WINNERS!

A few more of the fabulous tents…..

IMG_0683untitled-2P1090535This year’s Camp was made possible by all of your incredible fundraising over the past year, as well as an incredibly generous anonymous donor (thank you!!!).  We hope you’re able to join us next year for an even bigger and better event!!

 

 

Shine Dorset – new members lunch Oct 2012

We had a lovely lunch today at Frankie & Bennys at Castlepoint in Bournemouth – it was great to catch up with some existing Shine members and also meet some new ones!

It was also a great opportunity to talk about our plans for the rest of the year including starting to plan our Christmas party which will be on 15th December (book the date in your diaries now!!)

The feedback on our latest idea to host a weekly, fun exercise class has also been really positive so we are moving on with our plans to do that as soon as we can!   We are hoping to provide a weekly fun, mixed ability dance based exercise class which is for Shine members and their families (saves getting a babysitter!) Having a private class will mean that people will have the chance to meet up and chat to others as well as having the opportunity to exercise in a relaxed environment.

We all know that exercise is good for you, particularly after cancer treatment, but it can be difficult for people who have faced treatment including surgery, chemotherapy and or radiotherapy to have the confidence or ability to join a standard class at their local gym.  By creating a class just for Shine members, we are removing a lot of the body confidence issues faced by many after cancer.

If anyone has any suggestions or ideas for venues or teachers, please get in touch with Emma by emailing her at emma@shinecancersupport.co.uk

Thanks x

Life interrupted – A workshop!

Ceinwen & Emma both attended this years Macmillan Cancer Voices conference on the 12th & 13th October. This conference is for volunteers affected by cancer either as a patient or a carer who are active in Macmillans cancer voice programme.

Shine hosted a workshop at the event entitled ‘Life interrupted, dealing with cancer in your 20s, 30s & 40s’

 The workshop was oversubscribed and was rated a great success by the people who did get to attend.

The main output from the workshop is a great start to the style and content of Shines new series of online guides to the common issues faced by young adults cancer patients

Part of our plans for Shine and the small c project is to produce a series of ‘real life guides’ to some of the common issues faced by people dealing with cancer at this age.

From our online survey and our workshops, we have established a list of common topics that people need help with that are either not addressed at all during treatment or are not managed in an age-specific way.

Topics such as dating after cancer or returning to work are areas where there are no ‘one size fits all’ solutions but we believe that these

 guides, written by people that have been there, will help to reduce the isolation and give people positive ways to cope or specific helpful hints and tips to help them deal with these issues.

As we write the guides we will need your input! Get in touch if you feel you have something to contribute or look out for our email requests for help….

Shine Dorset Coffee & Drinks 30th August 2012

We managed a quick coffee and an evening drink this week! Trying to catch people that are busy in the evenings and those working during the day.

The Flirt cafe in Bournemouth triangle is the perfect host for an informal coffee catch up and their home-made cakes are amazing! It was great to meet a new Shine member too.

In the evening we were back in Bournemouth and managed to spot a couple of planes from the air show too, 2 for 1 cocktails went down a treat followed by a visit to the air show theme bar set up in Bournemouth square.

Our social coffee and drinks events are great opportunities for our members to meet up and have a relaxed chat with people that understand their experiences. The value of that is much more than the cost of a few coffees (we bought our own cocktails!!)

We have been talking to people from across the country about starting Shine groups in their areas, we hear from so many people from around the UK who would love to have something similar in their area and we are doing all we can to support these new groups.

It would be great to see enough groups set up across the country so that any young adult diagnosed with any type of cancer has the chance to meet others in their age group to help and support each other.

If you are interested in starting something in your area, please get in touch to find out how we can help!