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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Life, but not as you knew it: Being a “Plus One”

Most of the blogs we feature are written by young adults who are living with cancer – but who cares for those who care for us? And what does it feel like? In our latest blog, Caroline writes about coping with her husband’s diagnosis and the ways she found to look after herself when everyone was relying on her. Shine has a small but growing “Plus Ones’ network. If you’re a partner, friend, parent or sibling of a young adult with cancer, why not join our growing Shine Plus Ones network? We run it via Facebook – just click on the link and request to join.

As always, we’d love to know what you think about this blog – and please share it with anyone you know who might be interested!


Cancer barged into our lives uninvited, ruthless and arrogant, and rapidly took the reins. Even before my husband was diagnosed, we knew something wasn’t right and our lives had already changed significantly – mostly in terms of anxiety. I would lay awake in the still of the night, hugging my nursing daughter close, terrified that I might soon be a single mum. Our life full of promise – in a new home, a new job, new friends and a new baby – was stopped in its tracks. The foundations of my life were suddenly very unstable and a new role as “carer” had been thrust upon me.

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Blogger Caroline Puschendorf

Cancer became our dictator

From the day we received the diagnosis – germ cell carcinoma, intermediate stage – the loss of control of our daily lives seemed to escalate. My life was no longer about running the home, toddler groups, changing nappies and days out as a family. It became about appointments, test results, clinics and chemo. As much as I tried to keep things “normal” for the kids, the inability to plan was overwhelming. Even mundane decisions that I previously took for granted were no longer within my control. I didn’t know from one day to the next where our family would need to be or who would look after the kids and for how long. The unpredictability of my husband’s symptoms challenged family life even on the days that weren’t disrupted by unscheduled or delayed hospital appointments.

Then, just as we were settled into a rhythm with chemo and had a “treat to cure” plan, my husband got very ill with a virus while he was neutropenic. We were back on high alert. This was a stark reminder of the fragility of our situation, the uncertainty of the future and my perceived powerlessness.

I was exhausted, emotionally drained, and my own health was beginning to unravel

Caught up in the adrenalin and anxiety of my husband’s health crisis, I neglected my own health, both physical and emotional, by repeatedly prioritising my family. I slowly realised that my health was just as important – after all, everyone was relying on me, plus it was one thing I could control. I chose to invest in myself and to proactively nourish and nurture my family. I researched and developed a “no-fad” cancer-patient friendly eating plan and set about caring for my family’s health.

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Caroline’s husband, Rob, and one of their children

As a biologist I am well aware that our bodies need a plethora of resources to function at their best. We need nourishment, rest and movement in unique and varying amounts, especially in sickness. Only when balance is achieved do we build the reserves we need to invest into others and/or support our body in recovering from illness.

Having been a carer with two young kids, I know how important my health is, but also how easy it is to put it at the bottom of the list, but once I adopted some simple strategies, my emotional and physical health – and that of my family -massively improved.

Staying in the moment

  1. Being still for 5 minutes each day. Simply breathe and be there. Accept all thoughts and feelings that come, embrace and experience them,–especially the hard, gut-wrenching ones, then release them. This is difficult, as we get so used to suppressing emotions and putting on a brave face, but this strategy stopped me misdirecting my anger, anxiety and frustration at unsuspecting and innocent parties. For example, I realised that when my son’s behaviour was uncharacteristically awful, it was actually a reflection of my anxiety, fear or stress. Acknowledging these emotions allowed us to enjoy each other and have fun.
  2. Connecting with my husband. It’s easy to slip into the role of carer and loose touch with your old relationship. Make time to love each other in the way that you used to; a partner, sister, brother, son or daughter. Love without pity, sympathy, anger or fear. Just be there with love and laughter. Remind yourselves of what you mean to one another.
  3. Being grateful every day. I used to get annoyed when people said this to me, were they expecting me to be grateful we had cancer? That’s not what I am saying. I am saying find the positives, even the little ones, each day. Is the sun shining? Did you find a parking space? Did you get good results? Were you able to share time together? Getting into the habit of thinking through the positives, event while you brush your teeth, can be a powerful thing!

Taking control of my health

In addition to the above, I also made a few changes to my diet and routine:

  1. I took Epsom salt baths 1-2 times a week. This was amazing for alleviating tension and encouraging a peaceful sleep – something that was very elusive!
  2. I cut back on caffeine and sugar. These are easy to over-dose on, especially during times of stress, but they ended up making me feel irritable and tired, which was less than ideal. I also stayed away from hospital vending machines and made sure to take healthy snacks – like fruit and raw nuts – to our appointments.
  3. I implemented a “no-fad” cancer-patient friendly diet. Taking charge of family health through food was really empowering. I found a way of eating that suited the whole family and was based largely around a mineral broth.  It was easy to eat and highly nutritious food that worked well for a chemo-weary tummy!

After three rounds of BEP chemo and major abdominal surgery, my husband is now in remission. Life is slowly returning to a new kind of normal, and that’s ok.  Cancer slowed us down and changed us, but it hasn’t broken us. There’s a lot of life to live and we are bouncing back!

Caroline Puschendorf is a nutrition and health coach who blogs regularly here.  For some of her recipes, including her Super Mineral Broth, look here.

 

 

Life – but not as you knew it: Just the Two of Us

Having cancer is tough. Supporting someone with cancer can be just as difficult.  So what do you do when you’ve got to do both as a young adult?

In our latest blog, Charlotte shares her story of coping with cancer twice in four years: first, when her husband was diagnosed with Hodgkin lymphoma and then, a few years later, when she was diagnosed with non-Hodgkin lymphoma.  It’s a rare situation but it’s not unheard of – and across Shine we know a few couples who have had to deal with a cancer double hit.  Frank and honest, we’re sure you’ll be able to relate to Charlotte’s thoughts on the changes that cancer brings.

Please feel free to share on Facebook, Twitter or your blog!


Charlotte and Neil

“I love you”.

When you fall in love and share those three little words with someone, life is meant to be happy and full of dreams. But there are three other words that can change your life forever. Your dreams shatter into a million pieces and vanish beyond reach. Those three words are, of course, “You have cancer”.

Any young adult with cancer would wonder what they did to deserve a potentially deadly illness at a young age, and would worry about what the future holds. But when both you and your husband have to hear those words, the world comes crashing down and is never the same again.

This is what happened to my husband and me. Neil was diagnosed with Hodgkin’s lymphoma in 2009 aged 29, and had a recurrence in 2010. I was diagnosed with non-Hodgkin’s lymphoma in 2013, aged 32. Neil had 6 months of ABVD chemotherapy but then went on to have further chemo, a stem cell transplant and radiotherapy. I endured an intensive course of RCODAX/M-IVAC chemotherapy, a high-dose regimen.

When you take your vows, ‘in sickness and in health’, as we did in 2007, no one expects them to be tested to the limits until you are in your late seventies, if at all. The reality of what our relationship has become, with one another as well as other people, is a far cry from what it should be at our age. On the one hand I wouldn’t have wanted to share my cancer experience with anyone else. I feel blessed to have met someone who has stood with me through my darkest days. It is great that we truly understand how each other feels and that we can fully empathise about the effects of chemotherapy. We have shared the highs and lows, laughter and cancer jokes, and cried many, many tears. However, it is not what we wanted from our relationship. We had dreams of a family, a new house and successful careers – what every young couple wants for their future. But our lives are a far cry from this and we have been left feeling like we live in a bubble, looking in on people who are living our dream.

When we told friends and family about Neil’s diagnosis it was a shock to all of them. Some tried their best to offer support while others struggled with what to say and do. One of the hardest parts for me was that, as people rallied round Neil, no one asked how I felt. I tried my hardest to be the strong one, to look after Neil and to hold down my full-time teaching job. As Neil recovered from his treatment we were unsure how to express our feelings to other people and found it easier to not contact people at all. Everyone’s life was moving on and ours was stuck on pause. Then we were hit again; when I was diagnosed, it was Neil’s turn to juggle a job and to look after me.

Disbelief is the only word I can use to describe that day. Dealing with Neil’s cancer was hard enough but, with me, people were lost for words. They couldn’t find the right words to say so they often didn’t say anything at all. To the outside world that may have felt like the best strategy but being on the receiving end made me feel alone and isolated. Some friends stuck around to offer their support while others sailed off into the distance.

We have watched friends and family get married, have children, buy new houses and new cars, get new jobs, and go on holiday. We have tried our best to share these happy moments but they have always been tinged with sadness and a bit of jealousy. Due to the side effects of our diseases and treatments we have had to make adjustments to our jobs and career plans and we can’t afford the bigger family home we were hoping for. The biggest loss for us is children. Before my diagnosis Neil and I went through IVF but were unsuccessful. Five attempts later we had to walk away empty handed, emotionally and physically strained, and our pockets full of debt.

I survived my cancer diagnosis with Neil by my side and although cancer has changed the usual elements of our relationship it has bought us closer together. Neil was there every day to share a hug when there were no words to say. We have an unbreakable bond, we hold each others’ hands tightly and we are thankful that we have each other. Our relationship is one of love and trust. With our treatments finished, now is the time to bring back some fun and sparkle into our lives. Neil and I are in this journey for the long haul. We may not be able to have the same dreams as our friends but we can make new dreams that are meaningful to us.

Charlotte lives with her husband Neil and their dog Willow.  She hangs out with the Shine crew at Shine Dorset meet ups.