Shine’s Northern Retreat

Hi everyone, I’m Rosie, and I’m the newest member of staff here at Shine HQ.  I was diagnosed with breast cancer in June 2016 and after following the usual treatment route of surgery, chemo and radiotherapy, I now have ongoing maintenance treatment every 3 weeks.  This is because the docs think that, at one point, the cancer spread to my spine, although currently I have no active disease.

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At work in the Shine office

A close friend of mine told me all about Shine at the very beginning of my treatment and as soon as I went to my first Shine event, I was hooked! I decided very early on that if the opportunity to work for them ever came up then I was definitely going to apply! I took on a volunteer role of jointly running the Dorset network and then, last June, I managed to make it back to the second year of my social work degree at Bournemouth University.  I was super lucky that I was able to choose my placement and so, of course, I chose Shine! However, around Christmas time that I re-evaluated the route that I was taking; trying to keep up with academic work around my treatment, while also coping with fatigue, was proving troublesome. The degree no longer felt so relevant now that I had new priorities: mainly staying alive, enjoying the time I have left (however long that might be!) and giving back to the community.  As a result, I made the hard decision to leave uni and instantly felt much better! Then in January of this year, (very serendipitously!) an opening at Shine appeared that was perfect for me: part-time hours and the opportunity to get involved with all the fab work that Shine does. I applied, and the rest, as they say, is history!

One of my first jobs was to help out Hannah (who runs Shine’s Manchester network), to staff Shine’s annual North Retreat in early March.  Shine’s retreats give attendees the opportunity to have a break from the stresses of living with cancer while also getting to know others in a similar situation.  

Ten of us settled into a spacious and comfy farmhouse that we had hired for a weekend, in a small village not far from York. Everyone was free to do as little or as much as they liked throughout the weekend. The only thing that we asked was for everyone to muck in a little bit (if they were able) with the cooking and tidying up.  If our Tesco delivery was anything to go by, we knew that we definitely weren’t going to go hungry!

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Tesco delivery!

Once everyone had found their rooms, we all settled in and got to know each other over a lovely home-cooked spag bol.  Some people had been to Shine events before and knew a couple of members of the group, but for others this was the first Shine event that they had attended.  Everyone understandably had some anxieties about spending the weekend with new people, however that soon dissipated when we realised that we were all in the same boat.  

On Saturday, most of us braved the British weather and headed off to the local market town of Beverley for a bit of an explore around the shops and market stalls, and we also grabbed a bite to eat while we were out.   Afterwards, we headed back to the house to either rest, play games, or go for a wander in the surrounding grounds. At this point we were also joined by the lovely Rachel (who used to volunteer to run the north East network)! pasted image 0 (5)

Once we had spent some time catching up, it was time to jump in some taxis and head out for a lovely dinner in the local village pub.

Sunday was again a relaxed affair. Some of us stayed at the house to play games, while others went off for a walk.  The walking route ended up being a bit longer than anticipated but everyone ended up safely back at the house in time for a home-cooked roast dinner before half of the attendees packed up and made their way home.

On the final night, those of us who were left had some drinks and played some more games….Cards Against Humanity anyone?!

The next day, we were all sad to leave because it had been such an awesome experience! Those who had come not knowing anyone now no longer feel quite so isolated (especially as we have an active WhatsApp group to stay in touch) and the general consensus from everyone was that they would definitely recommend our retreats to other Shinies!

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Pub!

On that note, the next retreat that we have planned is in Dorset from 17th to 20th May!  If you are interested in finding out more, please drop me an email to find out more (rosie@shinecancersupport.org)!

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!

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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

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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.

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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!

On being a Plus One

On 9 March we ran our second ever Shine Plus Ones workshop in London. We were joined by the partners, siblings and parents of young adults who are living with cancer. It was a great day that covered some tough subjects but we left feeling like we’d spent the day in the company of nice people (always a bonus if you’re going to spend your Saturday talking about cancer!). We are also really grateful that one of our Plus Ones, Chris, wrote a blog about the day so that we didn’t have to! Whether you’re a Plus One or not, take a read – it’s so important that, in addition to the person with cancer, that those around them get the right support too.


Hello, my name is Chris and I’m a Plus One.

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Chris and his fiancee, Kirsty

Three months ago my 32-year old fiancée was diagnosed with cancer. An adenocarcinoma of the submandibular gland – salivary gland cancer. She’s had surgery, healing, radiotherapy and now more healing, with plenty of tears, pain and mucus involved. Mentally she’s doing pretty bloody well considering. It’s a rollercoaster, as well you’ll likely know if you’re reading this.

For me, my fiancée’s diagnosis came off the back of my mum finding out that she had Non-Hodgkin’s Lymphoma 11 years ago, at the age of 51. A few months later, her 53-year old brother was diagnosed with bone cancer and died within months.

Anyway, what I’m getting at, is that it’s been tough, right? I was 22 when my mum was diagnosed and that was scary. Now I’m 33, and man, I’ve just got onto a much bigger rollercoaster.

Support

The last few months have been tough. There’s been support – some fantastic NHS surgeons, registrars, consultants, nurses, radiographers, receptionists, dietitians, speech therapists, and physios. And we’ve been lucky to have access to some brilliant Macmillan nurses, coordinators and counsellors. But the one thing we’ve been missing? Young people. Friends our age don’t always get what we’re going through, and frankly why should they?

It’s tough waiting for appointments in rooms of 30 people, all looking at least 30, 40, even 50 years older than us. Of course it’s sh*t for them too – no one should have to go through this, no matter what age. But there are differences when going through this at our age, and that’s where Shine comes in.

Shine Plus One

We found Shine after some helpful recommendations. We joined some online groups and pencilled in a few diary dates – for me, it was the Shine’s Plus One Workshop, for my fiancée, some meet-ups, and for both of us, Shine’s Connect conference in May.

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At the workshop with Salma, one of the Plus Ones volunteers

A few weeks passed and I was on a morning train up to London, with my fiancée resting at home with morphine, Breaking Bad and her sister to help out.

Arriving at Somerset House I was welcomed with loud hellos, broad smiles and hot tea – a pretty good start! There were a dozen or so of us there, mostly new to Plus Ones and understandably a little nervous.

We settle in with Emma (one of the co-founders, and an excellent facilitator of what is a tough crowd, let’s be honest!). She laid out the plan for the day and put us at ease. Emma gave a little context and talks about what the charity does. Short answer: some bloody great work (though you can find out more details here). One thing that’s evident is the many friendships formed through Shine’s activities. It becomes clear that these friendships are genuine and numerous the more the day goes on, with references to funny stories of people in the room or those they support, and photos from events full of hugs and smiles.

Morning half

An icebreaker is there to break any tension and put people at ease, and without giving anything away, Emma did a great job. We were introduced to each other, to our situations and to what we were looking to get from the day. There were some tears, naturally (myself included), but there were plenty of laughs there too.

The conversation turned to talking about support from friends and family, and how so many people get it so wrong or do so little. There were lovely stories as well though – people happily being pointed in the direction of a cooker, cleaning products or a lawn mower. We ended feeling significantly better equipped to request help from those who offer it.

We had a great first few discussions but stomachs were rumbling, so we went off to lunch. There was mingling and conversation over a generous amount of sandwiches, salads and snacks (the remainder of which is later donated to two nearby homeless gentlemen). We referenced the great experiences of the NHS, and the not so great ones. And we all agreed that if you want anything done then quiet compliance just isn’t going to cut it!

Afternoon half

Coming back from lunch I paused to consider how well it’s going – I already felt more supported, more understood, less alone.

Kathy (a kind counsellor who works with families and patients in hospitals) facilitated a discussion around themes of loss. We broke off into groups and the expected came up – certainty, spontaneity, plans, time, but also some of those things that feel unique to those of our age that are facing this – loss of future family and career.

The topics were fed back to the group and then we discussed coping techniques, and even some of the gains you can get through this process – strength in your relationships and worrying less about the little things, nicely named by one of the participants as ‘give-a-f**k-ability’!

We then moved to talking about coping with worry. We talked about how you can feel knackered from being constantly tense, and waiting for more bad news. We talked about techniques to help with worry – writing worries down, drilling in and fully understanding them, or even dedicating some worry time in the day, leaving you free elsewhere.

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Ways that the Shine Plus Ones cope with worry and stress

As it was nearing the end of the workshop now, Emma slowed things down a little and gave us some time for ourselves with a relaxing eight minute mindfulness exercise. We slowly came around and drifted over to the bar, conveniently located in the room across from us.

Pub half (yes that’s three halves!)

The chats continued and moved seamlessly between how we’re coping and the everyday. We learned a little more about each other – walks were organised and details exchanged. We were just another group of people chatting in the pub, not defined by what we’re going through. Not defined by cancer.

And process!

I reflected on the day during my journey back to down to Brighton. I’m amazed at how much impact it had, how quickly I felt connected with the group, how much we laughed, how much we understood each other, how similar our experiences have been.

It wasn’t forced, it wasn’t awkward, it wasn’t a barrage of sadness. It felt normal, useful, fantastic.

I was left thinking “how can I help”? Help fundraise for a excellent charity, help others access what I got, help others understand the benefits. I’m starting with this blog.

If you’d like to get in touch with other Plus Ones, you can request to join our Shine Plus Ones Facebook group (make sure to answer the questions!). You can also drop Salma (a Plus One herself) a line at plusone@shinecancersupport.org to find out about meet ups and events. 

Moving on – with the help of broken crockery

Here at Shine HQ, we frequently see questions about “returning to normal” in our online groups. Young cancer patients rightly want to know when they’ll be able to get back to there they were before but, in most cases, there isn’t an easy answer. For many people we work with, we know that life doesn’t ever really go back to normal. That’s not to say that it can’t be good (or even better) than before – it’s just that something as big as a cancer diagnosis can leave you feeling changed. In our latest blog, Karen shares her thoughts on “moving on” – and explains how it relates to the Japanese art of Kintsugi!


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Blog author, Karen Myers

The end of active cancer treatment is a weird time. It’s all you’ve wanted since diagnosis – an end to hospital appointments, tests, treatments, side effects, surgery, pain, discomfort, feeling a little bit shit. And then, if you’re lucky, it is over. You’re told that your treatment has done it’s job, got rid of the invaders, killed those nasty cancery cells so you’re NED (No Evidence of Disease) or in remission. You’re good to go. Back to normality.

Except there’s not really a ‘normal’ after cancer. At least not the same normal as there was before. It’s a readjustment. Your energy levels, your self-confidence, your relationships, your work and social life, your body and your body image have all been knocked. With the safety net of treatment removed, you are confronted with the things cancer has left you with or taken from you. After my breast cancer surgery, which removed my entire right breast and used skin and tissue from my stomach to rebuild a new ‘foob’ (fake boob), something I’ve definitely been left with is scarring. Physical and emotional.

My physical scars are going to remind me every day, for the rest of my life, what cancer has done to my body. They’re pink and vivid, only three months after my surgery, and although I know they will fade in time, I also know they are a permanent marker of the path cancer traced across my skin and my life.

But scars don’t have to be thought of as ugly reminders of something terrible, of the price your body has paid for fighting cancer. In an attempt to see my own scars in a different light, I’ve become a bit obsessed with broken crockery and the Japanese art of ‘kintsugi’.

Kintsugi, translated as ‘golden joinery’, is focused on repairing broken items of pottery with a lacquer mixed with gold powder. By using the golden glue, those joins where the broken pieces have been put back together aren’t hidden or disguised but embraced and celebrated. Kintsugi says that the breaks, and the subsequent repair, should not be ignored, but valued as an indicator of the hard history of that item. By adding gold, that history, the cracks, the breaks and the struggle to bring about repair, make the broken item of crockery even more beautiful than before. Kintsugi recognizes the fragility of the broken piece, but also testifies to its strength by making the new bonds glow and shine, to celebrate that which is holding them together.Kintsugi

To me, this is one of the most beautiful concepts that cancer survivors can apply to themselves. Now, I’m not suggesting that everyone tattoo their surgical scars gold (although it is somewhat tempting). Instead, I’m trying to embrace the philosophy behind kintsugi as a way to accept my scars, both those visible on my skin and those hidden in my heart and mind, as evidence of both my fragility and my strength. Bodies do break and break down. The human form is fragile, even when we’re young. There’s no shame in being ill, so why should we be ashamed of the scars that mark us out as having endured? Alongside the suffering these scars, these breaks in the pottery, also show endurance, strength, resilience, determination, sheer bloody-mindedness, and, we hope, recovery. No-one asked for them but, just like a piece of kintsugi-rescued crockery, our scars are part of our cancer, and life history.

Of course, when active cancer treatment has finished, anxieties about the future still abound – we worry about the risk of recurrence, of developing secondary cancers, the impact of depleted energy resources, the possibility of resuming work and the damage done to our mental wellbeing. It’s too simplistic and insulting to assume that because we have finished treatment we can simply ‘move on’ or ‘return to normal’. But for those of us lucky enough to be officially cancer-free, the kintsugi philosophy asks us to see those emotional scars and continuing anxieties as markers of our resilience. We might not feel resilient or brave – I hated anyone telling me I was brave during treatment. I wasn’t brave. I cried and raged a lot. I got on with it because I didn’t have any choice – but the golden lacquer shows that what broke us initially was overcome. We face continuing physical and psychological challenges, but with a history of obstacles overthrown marked into our skin and our psyche. It is glued into our repaired bodies and recovering minds.

I’ve never been much of one for tattoos. But since losing my breast to cancer, I’ve been fascinated by the stunning skin-inked artwork that some women have chosen to cover their mastectomy and/or reconstruction scars. Rather than opt for nipple reconstruction or 3D nipple tattoos, these women have put their own bold, beautiful stamp on their bodies. To honour what has been lost and to shout to the world that there is beauty even in scarred and damaged tissue. For me, it seems strange that the scars I see every day will eventually be forgotten by most of the people I know, even close friends and family, because they are hidden. So I see that tattooed artwork as a contemporary body-art form of kintsugi, and it may be that is the way I reclaim my own body, my own sense of self and remind the world that I have been broken but repaired.

Moving on is always going to be hard when you bear scars. But maybe with a glint of gold in your post-cancer wounds, be it real tattoo ink or metaphorical mind-glue, you can start the process of healing and re-forming into a new, fragile but resilient, kintsugi-d you.

Karen Myers is a blogger, baker, knitter, traveller, theatre-goer and escape room addict. She was diagnosed with invasive breast cancer in July 2018 and has blogged about her experience at atozeeofbc.com.

Can you support our #Give4Shine campaign on Giving Tuesday?

At Shine Cancer Support, we run 13 networks across the UK to support young adults with cancer. These Networks are the core of our support and always have been; they provide a unique way for young adults with cancer to meet others who have had similar experiences. This year, on Giving Tuesday, we’re asking for your help to raise £3,000 to keep these Networks going.

There are many ways that you can support our #Give4Shine campaign. Read on to get involved and help us to reach more young adults with cancer than ever before! ______________________________________________________________

If Shine is about one thing, it’s about community.  

We started Shine 10 years ago because we felt isolated and alone as young adults with cancer, and we wanted to change that. We began as a small group meeting together for coffee in Dorset. In 2012, we started our Shine London Network, bringing together capital-based young adults for meet ups and drinks, and we quickly spread to the Midlands, Newcastle, Cardiff and beyond!

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Ceinwen & Emma, Shine’s founders

While we’ve grown a lot, and developed new ways of supporting young adults with cancer (do check out our website for details of upcoming events!), the one thing that has stayed the same is our belief in the power of being surrounded by people who just get it – other young adults who know what it’s like to be the youngest person in the waiting room, who wonder how they’ll ever find the energy to get back to work, and who live with the uncertainty that a life-threatening illness brings to every part of life.

More than anything, we’re proud that we’ve been able to bring people from across the UK together to share their experiences, chat, and – very importantly – laugh.  Run by our volunteers (all of whom have had cancer themselves), we know that our Shine Networks make a huge difference: 97% of people who have attended a Shine event in 2018 say it’s made them feel more supported and less isolated as a young adult with cancer.

The best thing about Shine_ Knowing that I_m not alone, and that there are people my age who understand the way I feel. – JB, Shine member

This Giving Tuesday, we’re trying to raise £3,000 enough money to support our Shine Network meet-ups for a year. It’s the biggest one-day goal that we’ve ever set and there are a bunch of different ways you can help us!

  • Donate: Every little bit really does help and you don’t need to donate hundreds to make a difference!  If you’re able to support us with a donation, £10 would be very, very appreciated – simply text “TUES10 £10” to 70070.
  • Blog: Can you write a blog post to highlight how your peers with cancer – your cancer crew, if you will – help you? If you’ve been to a Shine meet-up, you could write about how our local Shine Network events help, what you’ve enjoyed about them and why you’d recommend them to others. Or anything else that shows the value of being with people who understand! We’re asking each blogger to inspire 10 readers to donate £10 – a total of £100, enough to support the activities of five of our local Shine Networks for one month. Get in touch at hi@shinecancersupport.org or via our website and we can send you further details.
  • Share: We’re asking as many people as possible to share on social media how Shine Networks support young adults with cancer. You can aim simply to raise awareness (which we need!) or your posts can also be aimed at inspiring your friends and family to donate £10 towards our goal.

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    Shine members on a 2018 Great Escape weekend

Download our images below (just right click and “save as”) and you can share them with your own comment about how Shine has helped you or why you’re supporting us.

And whatever you do, don’t forget to use the hashtag #GIVE4Shine!

Thank you!!

 

Save & share these images (or your own!):

If you’d rather make a direct donation, you can do so here

Meet Rosie – social work student and latest member of the Shine team!

Rosie is a university student studying social work in Bournemouth. We’re extremely lucky to have her on placement with us until January 2019. Below Rosie tells us a bit about herself, how she found out about Shine, and what social work can mean to those living with cancer.


Hi everyone, I’m Rosie! I’m 33, and in June 2016 I was diagnosed with breast cancer for which I now receive ongoing maintenance treatment because they think it has spread to my spine. At the time of writing though, I currently have no evidence of disease!

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Rosie

When I was diagnosed, I had just finished my first year at Bournemouth University studying social work. I took two years out and had pretty much written myself off, let alone the thought of getting back to uni! Fast forward to 29 June of this year and it was the first day of my second year of university, and I was on placement with Shine!

I’m very lucky that my uni let me start placement early, do it part time, (it will take me into the beginning of January) and choose where I went. I’m equally lucky that Shine are so flexible with when and where I complete my 70-day placement so that I can fit it around my treatment, appointments, and fatigue. As I write now, with my feet up on my sofa, cat and chocolate to hand, I really couldn’t ask for more!

Before my diagnosis it would not have occurred to me that, once I had qualified as a social worker, I would like to work with young adults who have had a cancer diagnosis. In fact, the thought of it would probably have terrified me: what if I said the wrong thing? And surely it would all just be really depressing, right? Wrong!

As soon as I was diagnosed, I found Shine through a good friend of mine who was already part of the ‘cancer crew’. The support that I felt was unbelievable. Just knowing

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Social work isn’t about being a child catcher!

that there were other people out there in my age group who get what it’s all about is all that I needed. I was sold! It’s the informal peer support aspect that, for me, is the best part. We meet up where people our age want to meet up, and we do what people our age want to do. We talk about cancer if we want to, but it’s not forced and awkward and, most of all, it’s actually fun and a light relief from the usual drudgery that is living with cancer.

I had gone into my degree thinking that, once qualified, I would work with children and young people because that is where the majority of my work experience had been based. However, now I have a new group of fabulously ‘Shiny’ people to be passionate about. I believe that my personal experiences can have a positive impact on others in similar situations. Just before starting placement I was really excited to become a joint Network Leader for Dorset. I love it and I will continue to do it long after placement has finished!

Social work comes with a lot of preconceived ideas, stigmas, and a veil of mystery that the tabloid press does nothing to dispel. With their constant scare-mongering they would have you believe that we are all some kind of crazed child-catchers!

So what exactly IS social work – and why is it relevant to you?

Social work is a lot of things but this statement sums it up quite nicely.SW

As we all know, life can be turned upside down in an instant, and when that happens we all need someone to reach out to, whether that’s for practical or emotional support. I am really lucky to have a fantastic specialist social worker based in my hospital oncology unit, but sadly these are very few and far between. His role is funded by a charity and he has helped me with things like filling out benefits forms and making sure that I have an up-to-date seatbelt exemption (I need this because of the placement of my portacath).

Shine fills that much-needed gap for young adults with cancer who are looking for support.

While I’m on placement with Shine, I will continue to jointly run the local Dorset Network which includes organising meet-ups and events, welcoming new members, supporting alumni to move on as they approach 50, and developing a local ‘Plus One’ Network. But I will also be working on a number of other projects, including developing a directory of useful services for Shine members, collecting evidence of the current needs of young adults with cancer, and working on a diversity project to ensure that Shine is reaching all communities affected by cancer at a young age. In addition, I will be at the Manchester Great Escape as a peer supporter, and supporting the delivery of a number of workshops. On my first day of placement I headed to London for a training day for Shine’s Network Leaders. I was very pleased to find out that the core skills and values necessary for the role are identical to those required of a social worker: to be passionate about helping others, supportive, empowering, friendly, empathetic, caring, respectful, and to demonstrate integrity and trustworthiness.

I’m really excited about my placement because I feel like it’s important work that will make a genuine difference. Personally, since I’ve started on placement I feel so much more confident in my ability to function as a (relatively!) normal human being again. Being on placement in a cancer support charity has also, perversely, taken the focus off my own cancer and also given me a new-found purpose in life again. One of the only possible challenges that I predict is keeping on the right side of that fine boundary line, but for the next few months I’ll be making sure that I step back and look at all situations with my ‘Student Social Worker’ hat on.

I would love to hear from you! Maybe you’ve got feedback from a personal experience of interacting with a social worker or trying to navigate the benefits system? Maybe Shine has been an invaluable support and you’d be lost without them? Perhaps you can relate to my feelings of returning to study or work after your diagnosis? Whatever it is, please do drop me a line!

You can get in touch with Rosie by emailing her at hi@shinecancersupport.org.

 

 

Taking care: How and why ‘carers’ also need support

A few years ago, the partners of a couple of Shine members approached us about starting a ‘Plus Ones’ group. Having cancer is tough, they noted – but so is supporting someone with cancer. We started our Plus Ones group online and it’s continued to grow over the years. As we’ve worked more on supporting the supporters, we’ve also learned more about the issues that they can face.

In this blog, Dr. Jason Spendelow (one of Shine’s original Plus Ones) outlines some of the issues that ‘carers’ often face when supporting someone with a life-limiting illness. We know a lot of Plus Ones don’t consider themselves carers (78%, according to a recent survey that Shine carried out!) but we hope this gives you some insight into the support that someone looking after a young adult with cancer might need.


 

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Those who provide significant levels of care to another person are more than twice as likely to suffer from poor health than non-carers.

While carers do report many positive experiences, the physical and psychological wellbeing of this group is often compromised due to the stress associated with the support they provide. Those who provide significant levels of care to another person are more than twice as likely to suffer from poor health than non-carers (Carers UK, 2004). When asked directly, the vast majority (84%) of carers said that caring had a negative impact on their health (Carers UK 2013). Carer wellbeing, then, is a particularly important topic in cancer and other chronic illnesses. Carers provide a huge amount of support to loved ones affected by these illnesses. This means it is even more crucial that we take care of the carers.

Mental & Physical Health

We have an increasingly large pile of research available on carer wellbeing. From this, we know that psychological issues are among the most commonly reported difficulties amongst carers (Stenberg et al 2010). An important concept here is ‘carer burden’, which refers to negative emotional experiences that occur from providing care. The level of carer burden varies from person to person, with higher levels of burden being linked to female carers, living with the care receiver, spending large amounts of time caring, being socially isolated, under financial stress, and having no choice in becoming a carer (Adelman et al 2014).

Carers can experience a range of psychological difficulties. Some of the most common issues tend to be low mood and depressive symptoms, elevated levels of stress and anxiety, and lower quality of life (see for example, Braun et al 2007; Pinquart 2017, and Easter, Sharpe and Hunt 2015). Rates of depressive and/or anxiety disorders are higher amongst adult carers when compared to the general population. These figures do not mean that you are destined to develop such psychological issues, but carers are clearly more vulnerable. In late 2016, Shine carried out a survey of Plus Ones and found that 58% had experienced stress, and 77% had experienced anxiety.

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Shine’s first Plus One workshop covered how to cope with anxiety.

In addition to psychological difficulties, carers can experience decline in their overall physical health. Physical health problems vary and range from fatigue to insomnia, headache and gastrointestinal issues (Jassem et al 2015).

Positive Experiences

Despite the physical and psychological challenges discussed above, many carers can also identify positive aspects of their experience. Some of the reported positive experiences included being able to give back to someone, knowing the person is being well cared for, improved relationships, personal growth, and an enhanced sense of meaning or purpose (American Psychological Association 2018). Finding meaning and purpose is an experience reported across several groups of carers (Carers UK 2004). Being able to help is a source of satisfaction for many carers, while ‘giving back’ to someone and having an equal or reciprocal relationship are other positive outcomes (Spendelow, Adam and Fairhurst 2017; Buchanan et al 2009), Ribeiro and Paul 2008). The relevance to wellbeing is that experiencing positives from caring help people to cope better with the stress that comes their way.

Taking care of yourself

Your wellbeing is influenced by many factors. Believing that just one ‘thing’ is the cause of any experienced psychological difficulties is usually inaccurate and unhelpful. Attempts to improve your wellbeing, therefore, usually involves taking several factors into consideration. Look, I could bang on here about all the things you know you should be doing already: getting plenty of sleep, exercising, and eating vegetables. Yes, this is all true and fundamental to your health. But I won’t repeat the same advice given millions of times already.

Perhaps a more useful strategy is to ask ‘What barriers stop you from taking better care of yourself?’ and, more importantly, ‘What can you do about these barriers?’. Some barriers are physical: for instance, you don’t think you have time to look after yourself. Other barriers are psychological. For example, some carers feel that it is selfish to prioritise themselves over the loved one they support. Asking what barriers exist (and why) helps work out what might have gone wrong with previous failed attempts to take better care of yourself. These barriers need to be directly addressed, otherwise it doesn’t matter how many times you are told to go for a walk and eat some broccoli.

It may be that you need to discuss this issue with a sensible person that you trust in order to make progress with your wellbeing. Having said this, here are a few questions you can ponder to get you thinking more about barriers to better self-care:

  • What emotions might you experience if you put more time into self-care?
  • Why do you think you would experience those particular emotions?
  • What do these emotions say about your attitude to self-care?
  • What would have to change in your life to result in more time given to your wellbeing?
  • How might the wellbeing of the person you support be negatively affected if you spent more time looking after yourself?
  • What would be the worse thing someone could say about you as a carer? How does that influence your self-care?

 The Bottom Line

Carer wellbeing matters, both to the quality of life of the carer, and the wellbeing of the loved one that the carer supports. To cope with the huge challenges brought about by cancer, you need to be thinking of self-care strategies that are positive and sustainable over the long-term. If you fall over, both you and the person you care for will find things even tougher. Thinking about barriers to self-care can be a useful way to better understand your current approach to your health, and how you can improve it.

Jason is a clinical psychologist with a special interest working with people and their carers affected by chronic illness and disability. He also supported his wife through cancer. He runs his practice in Surrey. See more at www.jasonspendelow.com

To join our Shine Plus One Facebook group, click here. To join the mailing list for Shine Plus One events, please email plusone@shinecancersupport.org.