Can you help us to shape the future of cancer support?

Way, way back in 2011, Shine Cancer Support was tiny. We had two support groups (one in Dorset and one in London) and we weren’t yet registered as a charity.  We had no staff, but we felt like there was a lot of need for support for younger adults with cancer. Unfortunately, try as we might, we couldn’t find it – and we also couldn’t find any research on the needs of younger adults with cancer in the UK. To help us make the case for change, we ran an online survey as part of our Small c Project 2012. This was the first research carried out into the needs of adults in their 20s, 30s and 40s. The results helped us to shape our work and create workshops, retreats and conferences that covered topics that were of importance to our community: fertility, working after cancer, coping with anxiety, and more.

Small c Project - Image 4It’s hard to believe that seven years have passed since we first ran that survey! We’re now a small team of five people (all of whom have had cancer), and we’re a registered charity. We’ve been able to grow and expand across the UK and now have 14 Shine Networks. But we know there’s more to do, so we’ve decided to run the Small c Survey (version 2019!) again so that we’re up to date with the needs and issues that everyone in our community is facing. We would love to hear from you! If you can spare a few minutes, please do visit the survey and let us know your thoughts on how cancer has affected you.

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In 2012, 53% of respondents told us that they could no longer work in the same way as they had done before their diagnosis.

Why is this important? Well, when we did our survey in 2012, 53% of respondents told us that they were unable to work in the same way as they had done before their diagnosis. Fifty-three percent! Though we knew from our own experiences how tough returning to work can be, seeing the cold hard numbers in front of us made us determined to support younger adults with cancer to return to work – whether that was a new job, the same job in a new way, or something completely different. We’ve worked with a number of experts to develop workshops on working after cancer, and we’ve also included sessions on work at many of our Great Escape retreats and Shine Connect conferences. We’ve also been able to make the case to other charities and healthcare bodies that returning to work matters – and that younger people in particular need support because they’re facing cancer at a critical time in their careers.

Shine has always been a community-led organisation and we couldn’t do what we do without the insight we get from the younger adults with cancer that contact us. If you’re in your 20s, 30s or 40s and have experienced a cancer diagnosis, please help us out – the survey is here.

Oh! And as a sweetener, you could win one of three £25 Amazon gift cards. It *is* only 141 days until Christmas!

Shine and ASTRiiD – a new way of connecting people with cancer with flexible employers

Here at Shine, working after cancer has always been a core part of the work that we do. We’ve long been aware that our Shine community is full of talented people who are often un- or under-employed because of a cancer diagnosis or treatment. That’s why we were delighted to meet David and Steve Shutts, the brains behind a new initiative called ASTRiiD which aims to pair up people living with cancer who need flexible or part-time work, with companies that need talented people but don’t need them 9 to 6pm in an office. It’s win-win!

The ASTRiiD team have written a blog below which we’re delighted to share. Over the coming months we’ll be partnering with them as they launch ASTRiiD and begin connecting people with cancer with some great companies. If you want to know more, pop on over to their website or follow our Facebook or Twitter for updates!

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The choice of career available to most school leavers today is simply staggering compared to David Shutts’s own experience 35 years ago. For him, it was a life in the armed forces that beckoned, so he joined the Royal Navy aged 20 and became a Marine Engineer Officer where he served on a dozen different ships and travelled large parts of the world.

Aged 45, he thought it was time for a second career, this time in industry, and he was enjoying his professional life. Then suddenly, he was diagnosed with stage four kidney cancer. Incurable and inoperable, this diagnosis set the course for what will be David’s newest stage of life. Now, two years after his diagnosis, David is pioneering a project that will transform the lives of thousands of fellow cancer patients across the UK.

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ASTRiiD Co-founder, David Shutts

“There is only one way to approach this situation” David suggests, “and that is to make the most of every day available. It’s a bum deal but that’s what it is. Accept it and get on with making the most of what’s left.”

And this is why David has founded a project he calls ASTRiiD.

ASTRiiD aims to connect people who have long-term illnesses, but who also have plenty of skills and experience, with businesses that need an injection of talent and expertise.

“Holding down a permanent job can be a massive challenge for people with cancer and other serious health problems,” said David. “Yet many people still want – and need – to work. And don’t think, just because you’re young, that you don’t have what’s needed. I can assure you that there are many businesses out there where the ability to learn counts just as much as any formal qualification.”

ASTRiiD, which stands for Available Skills for Training, Refreshing, Improvement, Innovation and Development, is underpinned by technology from the IT partner, Salesforce. “ASTRIID epitomises modern commerce; there are no long winded application forms – we are doing everything on line through our website and are proud to be working alongside a leader in this field”.

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ASTRiiD logo

As well as providing heavily discounted licences to run the website, Salesforce (which is also supporting Shine) has pulled together a pro bono team to help David deliver the project.

“I call the members of this community the ‘Invisible Talent Pool’ as currently they are invisible to business and business is invisible to them. Through ASTRiiD I want to make the invisible visible.”

“By helping people find meaningful work, we hope to be able to boost an individual’s self-esteem and self-confidence.”

The demand side of ASTRiiD is provided by the UK skills gap, the term given to address how companies struggle to find the right people with the skills, experience and attitude they need to grow their business.

“There is a vast demand for skills out there. Our business landscape is dominated by micro-, small – and medium-sized businesses, all of whom at some point will need help to let them grow and prosper.”

“I speak from experience,” says David, “without question my health has deteriorated over the last two and half years since my diagnosis in May 2015.  But working on ASTRiiD and keeping busy has helped m maintain my mojo and my feeling of self worth and I know I’m in a much better place as a result of having meaningful work than I would have been if I’d had nothing to keep my mind and body active.”

“The beauty of ASTRiiD is that with the right connections we are supporting individual members, UK business and making sure that we stop ignoring a huge community of talented people.”

“That’s got to be the right course to steer.” says David.

Please take a look at ASTRiiD’s website for more information. You’ll be able to register and summarise your talent and experience and, importantly, let employers know just how much work you can manage). ASTRiiD’s matching process will then look to find those roles that you are best suited to, always keeping you in control of the communication so that you are only made ‘visible’ when you are ready.

For more information about work and cancer, make sure to read Shine’s previous blogs and watch our videos with Working after Cancer

 

 

 

Improving treatment and support for young adults with cancer in the UK and Europe

What a full on weekend!!

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Jon, Shine’s Fundraising & Comms Officer represented Shine at YCE’s Annual Meeting together with Rachel, one of our fabulous Network Leaders!

Together with Rachel, Shine’s North East network leader, I’ve recently returned from Youth Cancer Europe’s Annual Meeting in Vilnius, Lithuania!! We were so grateful to have met everyone and to have been a part of all of the important discussions that were held.

To be honest, I was very nervous beforehand about going…with my dodgy eyesight I’m not the most confident traveller and I wondered how my anxiety and fatigue would hold out. I find meeting others who’ve been affected by cancer to be really helpful, but big events can drain my steroid induced energy (Shine Camp and the Great Escape were amazing but I regularly had to pull back as my symptoms hit home). My friends are used to me having to take timeout but at the meeting I hoped I’d be able to contribute as much as possible, represent Shine, and bring back the expertise that was shared.

YCE’s website outlines their aims:

“Together we can help shape European policy, collaborate in and promote research, fight for better access to care, for better treatments, better conditions and help fix disparities that exist across Europe for young people fighting cancer.”

And they have a great tag line too: “Giving patients and survivors a voice in Europe”.

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Inspiring speakers at YCE’s meeting

At first, I wasn’t sure what issues young cancer patients in Europe face, or what disparities there are between countries, but the weekend proved a crash course in information, and greatly improved my understanding of the importance of policymaking too.

After cancer in my early 20s and through my work at Shine I’ve become well aware of the need for care to be tailored more to the lifestyle of young adults. I had some idea how government and industry policy influenced care, but at the meeting I was shocked to hear some of the issues that people faced getting access to any care, let alone care tailored to their age! It was inspiring to hear from the organisations working to support younger patients in countries that are still developing systems to reflect young people’s needs.

Many people at YCE were first diagnosed as children or teenagers and many of them are still suffering the impact as young adults. The kind of issues that we explored together are issues I only started going through in my late 20s – but that I’m still struggling with 10 years later. Things like anxiety and living with uncertainty, living with the after-affects of treatment, dating when most of my friends are already well into stable partnerships, the thought of children when everyone around me already has them, and trying to get a stable career when friends have been in theirs for years! Being at the meeting really made me see how the cancer care pathway has to support people as they leave childhood/teenage years, as well as people first diagnosed early in adulthood! As the demands of life change the impact of cancer changes too.

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Chatting through issues about working after cancer in a breakout session

The disparities between countries in terms of access to care became very clear over the course of the weekend, as did some of the practices that were working most effectively. Being at the meeting also made me realise how fortunate we are in the UK to have the NHS. Of course, many of us, including myself, have experienced problems with how NHS services work for younger people and know that there’s room for improvement in terms of specific types of care and in coping with the after effects of cancer. But at the meeting I heard examples of countries where cancer patients have to raise funds for each scan, as well as any treatment that may follow. Processes of diagnosis and referral are often not as efficient as they could be and patients often need to research treatments themselves. While there may be times when we have to research our conditions, fight for them to be tested or argue to access to certain treatments, for the most part we do trust our NHS professionals to make decisions in our best interest.

It doesn’t matter how or when we got here as young adults who are living with cancer, all of us need support to help us live as normal lives as possible. People who haven’t felt their bodies failing them due to cancer may find this difficult to understand. Everyone faces tough things growing up, but a serious illness adds another dimension. It makes it more difficult to live that “normal” life that all your friends appear to be living.

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Prioritisation session for the weekend

One thing the weekend helped me to realise is that change doesn’t need to be either local or national but that together (there were 23 countries represented at the meeting), we can create bigger and more meaningful movement for all. In order for the needs of young adults to be met, we need to improve how we communicate about them to decision-makers. We also need a solid understanding of the policies in our own countries that shape access to treatment and funding for research and new therapies.

As someone who’s had a survivable cancer, I feel a sense of responsibility to increase

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It wasn’t all work! Rachel takes in the view with a glass of wine!

awareness of what I have experienced so that others going through it in the future can have care that reflects their stage in life. Working together with YCE will allow Shine and the other participants to better examine and share practices, support others, and build a voice so that we can have a say about decisions made for us. Cancer patients have power and, if we are knowledgeable enough about how health systems work, we can speak on behalf of the 210,000 young adults currently living with and beyond cancer in the UK, to influence those decisions.

Jonathan is Shine’s Fundraising and Communications Officer. Why not sign up to this blog (see the button at the top!) or follow us on Instagram @shinecancersupport

Take heart and raise awareness….Does posting a heart as your Facebook status raise breast cancer awareness?

Has this happened to you?  You log on to Facebook and there’s a message from a friend asking you to place a heart as your status – no comment, just a heart. It’s for a breast cancer awareness day or week and is billed as an “act of solidarity”. But is it? And how does it feel to receive that message if you’ve already had breast cancer?

We know theses games are usually done with the best of intentions, but we had a big debate kick off online and in our private Facebook group last week.  “I’m SOOOO annoyed!” was a comment shared by many who asked, “does this really help to raise awareness?”. Others argued that anything to raise awareness of cancer is a good thing (and that the best thing to do is ignore the messages if you aren’t in a heart-shaped frame of mind).  One of our Shine members did, however, take things to a whole new (heart-stopping) level, by posting a picture of hearts drawn around her mastectomy scars. We love it when people go rogue – so we asked Bronwyn to tell us what was on her mind when she posted!  Read on to learn more!


Bronwyn.pngWhy did I do it?

I’ll admit, before being diagnosed with breast cancer late 2014, I used to perpetuate those silly Facebook “Breast Cancer Awareness” memes. Those coy, cryptic little messages that you get where you have to ask the person what the post is all about it.

The first one I remember doing was something to do with the colour of my bra. Why I was doing it then? If I’m being honest:  FOMO – Fear of Missing Out. Did I really care or know anything about breast cancer? Nope. By posting was I encouraged to find out more about breast cancer or help in anyway?  No. Were the people I was posting to? I really don’t think so.

Fast forward three years and it’s just gone midnight and I am impulsively painting pink hearts onto a scarred chest with my daughter’s pink glitter paint.  The same chest that has been decimated by the very disease that I couldn’t give a shit about before – except to post an ineffectual, silly comment on my Facebook wall. The hearts on my chest mimic this year’s Facebook trend of posting a pink emoji heart in your status.

I only saw two of these little hearts pop up on my own Facebook feed.  They niggled at me, but what bothered me more was the strong feelings they were stirring up in the cancer community I am now a part of – the same cancer community who literally saved my soul by providing an outlet in my year of treatment (and the continuing aftermath). They saw these emojis on their own Facebook feeds from friends and family who have never had cancer themselves.  They saw them as as pointless, lazy, careless, insensitive and serving no purpose except as acting as a cruel reminder. Something in my head snapped at midnight after reading a few days of this. I knew I had to do it right then because if I left it until the morning my sensible cautious side would have talked me out of it.

I needed those heartless hearts to stop. I needed to clap hard and loud in the faces of people who were posting them to wake them up. To show them the ugly reality of what cancer does, to shove it in their faces, and hopefully to make them see that this shit is real. I wanted to make them care. I wanted to make them do something beyond posting a silly little heart and pretending it means something or is going to change anything.

The support I got after posting was fantastic and positive and I am very proud that it was re-shared outside of my own Facebook echo chamber. But the comment that was the most meaningful to me was from a 35-year old woman that I worked with 7 years ago.  She had found some lumps and was referred to a breast clinic but then let it slide; she has now rescheduled her appointment for 21st February. That’s actually the type of “cancer awareness” I would hope for – that people are educated about when they should get their breasts (or any other part of their body) checked for lumps or if something just isn’t right.  A cryptic heart doesn’t do that.


bronwynBronwyn is originally from Cape Town, South Africa. She came to the UK in 2004 to travel and has been here ever since. Very happily married to a man who went through his own cancer experience eight years ago, she has a 4 year old daughter – a little miracle, as her husband was told they had virtually no chance of having children naturally after his cancer.

Bronwyn was diagnosed with breast cancer in late 2014 and went through treatment throughout 2015 and 2016 which involved a mastectomy of the affected breast and removal of the lymph nodes there. This was followed by six sessions of chemotherapy over a long 5 months, 16 sessions of radiotherapy and removal of the other breast and her ovaries because she has the BRCA2 gene.  

 

 

Small c Steering Group

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The small c steering group met up on Saturday 17th November to continue planning the exciting multi-day escape for younger adults living with cancer.
The meeting focussed on the content of the escape and how we are going to be able to raise enough money for it to happen!

Having worked on the detail of the content, we are really excited about how much of an impact this event will have on peoples lives.

Our survey proved that there are lots of areas where support is lacking for people dealing with cancer in their 20s, 30s and 40s and we are developing ways to address those gaps during the escape.

So keep an eye on our blog and website to see how you can help us make it happen!

The National Cancer Survivorship Initiative Conference 16 Nov 2012

Emma attended the conference hosted by the NCSI (National Cancer Survivorship Initiative) in London.

The NCSI is a partnership between Macmillan Cancer Support, The Department of Health and NHS Improvement. Their website says:

‘The aim of the NCSI is to ensure that those living with and beyond cancer get the care and support they need to lead as healthy and active a life as possible, for as long as possible.’

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The conference was a great chance to meet up with other health advocates alongside catching up with the work and aims of the NCSI.

There were presentations from Ciaran Devane, Chief Exec of Macmillan and a chance to ask questions of both Ciaran and Prof Sir Mike Richards, National Clinical Director for cancer and end of life care.

Emma said ‘ The workshops and presentations were interesting in that we learnt about projects that are ongoing and the impact they can have on patients, however it wasn’t clear to me how these recommendations and findings are rolled out across the UK. It is encouraging that there appears to be a lot of work under way focussed on ‘survivorship’ and it is vital that this work is spread out to people who really need it…. patients across the UK.  I believe our role as patient advocates is to encourage that to happen’

To find out more about the role and work of the NCSI, take a look at their website: http://www.ncsi.org.uk/

 

 

Telling it like it is…

One of our Trustees, Ceinwen, gave a talk to NHS human resource managers at the NHS Employers workforce leaders summit on 14 November in London. It was a small event with about 28 participants. Ceinwen told parts of her “cancer story”, focusing on the positives and negatives of her interactions with staff during her six month hospital stay in 2010. She spoke with a focus on giving the views of a younger person with cancer.

Ceinwen says “What was interesting about the day was that many of the managers know there are problems with staff behaviour and that this impacts negatively on patient experience – but no one really seems to know how to tackle the issue”. One of the most interesting topics discussed was whether senior clinical staff need more psychological help to deal with the stresses that come with treating critically ill patients. Maybe those hard-nosed consultants just need a shoulder to cry on? Food for thought!

http://www.nhsemployers.org/Aboutus/Events/Pages/WS-sessions-1.aspx