Shine Connect 2019: a participant’s experience

In this post, Shine’s blog editor Caroline writes about her first time at Shine Connect, our annual conference for people in their 20s, 30s, and 40s living with and beyond cancer.


I discovered Shine Cancer Support when I was first diagnosed with cancer in early 2017. I felt completely lost and as I clawed around in the dark, trying to make sense of the incomprehensible, I found the Oxford Shine network. I started going to local meet-ups, and then I was lucky enough to get a place on Shine’s Bournemouth Great Escape. I’ve been to Shine Camp, I’ve completed a fundraising 50km hike, and I also volunteer as Shine’s blog manager. If I could bear to look when the cannula goes in, I might even be able to confirm that I bleed orange too – who knows?

I’d never made it to Shine Connect though. I have anxiety that sometimes makes it harder to spend time with large groups of people and besides, who wants to give up an entire spring Saturday to talk about cancer? As it turns out, approximately 150 other young people with cancer! As May rolled around, I decided that this year I was going to give Shine Connect a try.

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Neil, one of Shine’s employees, greets some conference participants!

I’d signed up to attend the pre-conference breakfast, so I had an early start to get into central London from my home in Oxford. I arrived at The King’s Fund to coffee, delicious pastries and a big Shiny welcome! Each attendee (including me) had been matched with a Shine volunteer, which meant that I immediately found myself chatting with a small group of people, including one who had travelled all the way from Scotland just to attend Connect!

The conference began with a short welcome from Shine founders and co-directors Ceinwen Giles and Emma Willis, during which they introduced the charity and re-launched Shine’s small c project.

Second on the main stage was a panel discussion with Shine members Charlotte, Precious, Dan, and Chris who chatted about their own experiences with cancer and, in Chris’s case, what it’s like to watch a loved one go through treatment. I find it really useful to hear other young people’s stories. Regardless of the type of cancer, there are plenty of commonalities. The panel discussion picked up on a lot of themes that were then explored in talks and workshops throughout the day.

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Panel discussion on living with cancer at a young age.

There were lots of workshops to choose from but I’m really interested in improving my fitness to make sure I can live longer with my lung metastases, so I joined the session ‘Getting active after a cancer diagnosis’, led by Gemma Hillier-Moses from Move Against Cancer. Once Gemma had us all warmed up with a group attempt at the Cha-Cha Slide (so happy that there are no photos of me!), she talked about Move Against Cancer’s online programme for under 30s, as well as their popular 5k Your Way initiative. As someone who repeatedly sets herself challenging fitness goals but then gives up when she fails to achieve them, my biggest takeaway from the session was that movement doesn’t have to be structured. Going out just to run, rather than run 5km or run for 30 minutes, can relieve some of that ‘pressure to perform’ that we often experience. A brilliant tip!

Lunch provided the opportunity to share stories from the morning sessions, make the most of the delicious hot buffet (I’m still dreaming about the chocolate bread and butter pudding!), and meet the exhibitors in the marketplace. I snuggled the therapy dogs, picked up some lovely free moisturiser from Jennifer Young, and chatted to researchers about the specific needs of young adults with cancer. I also managed to catch up with some friends from the January 2018 Great Escape, which was great.

In the afternoon I opted for the ‘Managing Relationships’ workshop, led by Emma and Rosie from Shine. We talked about how the relationships with our family, friends, and colleagues have been affected by cancer, and the session felt quite emotional. Although I’ve taken part in similar discussions before, I still left the workshop with some fresh perspectives and new ideas.

After a quick cup of coffee (and scones and brownies!), all the conference delegates gathered for the keynote presentation: neuropsychologist Dr Stuart Anderson talking about the dreaded ‘chemo brain’! Dr Anderson put our cognitive skills to the test with a couple of simple but challenging exercises, then explained some of the scientific literature on the topic. I’ve never had chemotherapy but I’m sure that cancer has affected my brain cells – so it was good to hear that ‘chemo brain’ is also known as cancer-related cognitive impairment, and neurotoxicity from chemotherapy is only one of the many suggested causes. I can blame my poor memory and attention span on cancer after all! Thankfully, Dr Anderson closed his presentation with lots of helpful brain training app recommendations – so hopefully I’ll be able to concentrate again soon.

Stuart Anderson

Keynote speaker, Dr. Stuart Anderson talks about “chemo brain”.

Emma and Ceinwen closed the conference by thanking the event organisers TTA, the speakers, and all the excellent marketplace exhibitors. After a final group photo, it was time to open the bar! I had a fantastic time at Shine Connect and the day flew by. I’ll be back next year – and I hope to see you there?

Get yourself Connected!

About five years ago, a few of us at Shine HQ were having a coffee and chatting about why the UK didn’t have a conference for younger adults with cancer. After looking around a bit more (and confirming that there was indeed no such event), we took a deep breath and decided to do it ourselves!

We’re excited to be bringing back Shine Connect for a fourth time, for a gathering that’s bigger and better than ever before. We’ve kept the stuff that participants have liked (hello therapy dogs!) and added new and different sessions to cover topics that you don’t typically see covered anywhere else!Connect 2

What can I expect?

Shine Connect is a friendly conference – it’s got some conference-y type activities (like panel discussions and workshops), but it’s also an event where you’ll be able to meet other young adults with cancer. This year, we’re holding a pre-conference coffee & croissant session. If you’re coming alone or are just feeling a bit nervous about spending the day with strangers, register for this session! You’ll be met by some of our friendly volunteers who will introduce you to other conference participants. By the time we kick off at 10am, you’ll feel like you’re with old friends!ShineConnectGroupPhoto2018 (2)

And no, there isn’t a dress code (just wear what you feel comfortable in!).

What kinds of sessions will there be?

Every year, we survey our volunteers and online community to come up with a list of topics for Shine Connect. We then set out looking for experts that can cover those topics – it’s never an easy task but we give it our best! This year, we are super excited to have a number of never-seen-before discussions on some important topics:

Alternative routes to parenthood: We’ve often run sessions on fertility after cancer (and we’re still doing it this year!) but we know that a lot of those we support would like to become parents even if they can’t have their children naturally. We’ve lined up an amazing panel who are going to talk about egg and sperm donation, adoption and surrogacy. We looked far and wide for someone who has had cancer AND a baby via surrogate but they were very few and far between! We do, however, have the lovely Ben coming to speak about surrogacy – he’s just had a baby with his partner and is super knowledgeable about the surrogacy process in the UK and abroad. And our other speakers are experts too!

Ben Cawley

Ben (with his partner and their new daughter) will be speaking about surrogacy.

Man Up! We’re very happy that the award-winner trainer Paul DuBois is coming to Shine Connect and running a session especially for men on managing stress and anger. There won’t be any sitting around in a circle sharing (promise!) but it will be a great opportunity to talk to other men going through cancer and think about how you might be able to understand and manage the tough emotions that cancer can bring up at little bit better.

Menopause: Whether you’ve had a cancer that directly impacts your hormones or not, many women who go through cancer treatment either end up in menopause or facing early menopause as a result – and it’s not talked about enough! In this session we’ll have a panel talking about how they’ve managed early menopause and we’ll also be hearing from Dr. Rebecca Lewis, a GP with special expertise in menopause (and no, we didn’t

Dr. Rebecca Lewis

Dr. Rebecca Lewis, one of our panellists on menopause.

know that was a thing either!).

As if all of that wasn’t enough, we’ve also got sessions on:

  • Getting moving after cancer, with Gemma Hillier-Moses of MOVE Charity
  • Supporting children through a parent’s diagnosis, with Dr. Caroline Leek of the Fruit Fly Collective
  • A chance to get your boogie on with Emily Jenkins of Move, Dance, Feel
  • Dating after cancer (where we will discuss at which point you might consider telling your partner that you’ve had cancer!)
  • Fertility after cancer
  • A session on relationships and how they change after a cancer diagnosis.
  • We’ve also go a session especially for Plus Ones – if your partner, family member or friend would like to come along, they can join this session and meet others supporting young adults with cancer.

And to close the day, we’ve got the fabulous Dr. Stuart Anderson coming to speak about chemo brain. Can’t quite remember what that is? Well, it’s the cognitive changes that a lot of people experience as a result of cancer and cancer treatment – and Dr. Anderson, a neuropsychologist, will be talking us through why it happens as well as looking at ways that we can manage it.

Dr Stuart Anderson

Prof Stuart Anderson will be giving the keynote on “chemo brain”.

Anything else going on?

Why yes! We’ll have free massages and a virtual reality pod where you can try to climb a mountain or chill out by a beach. And by popular demand, the therapy dogs will be back (though, as always, we’ll keep them in a separate room so if you don’t like dogs, don’t worry!). We’ll also have a marketplace with lots of other great organisations who support cancer patients.

And of course, Shine staff and volunteers will be on hand to tell you more about Shine and the work we do.

Sounds great! How do I register?

Simply head to HERE and register! You can sign up for the sessions you’d like to attend, let us know about your dietary requirements and also ask questions that you’d like to see answered in the session.

Tickets are £25 for young adults with cancer and the friends/family/partners. If you’re on benefits, we do have some bursary places available, as well as some travel bursaries. Just drop us a line at connect@shinecancersupport.org.

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Neil, one of Shine’s volunteers

Still feeling unsure? Neil, one of Shine’s volunteers said this after he came to Shine Connect 2018:

Definitely go for it! Shine is such a lovely, friendly community. I was chatting to people all day who had come to their first event and were nervous but everyone made them feel so welcome. I think everyone that goes remembers how nervous they were before their first event so they go out of their way to help others feel comfortable. What have you got to lose?!

Hope to see you there!

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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.

Sex after cancer

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!