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!

Working after cancer

Building a career and carving out your path in the world of work is tough, particularly when you’re young. If you’re young AND diagnosed with cancer, work can suddenly get much tougher. Some people work through cancer treatment, finding the routine helpful in maintaining a sense of normality; but this isn’t always possible, especially if the treatment (or the cancer) makes you feel ill, or you develop secondary infections or other conditions.  We’re delighted that Barbara Wilson, founder of Working with Cancer, has written a blog. Barbara has years of experience in human resources but she also has personal experience of working while being treated for breast cancer. Her blog below contains lots of useful tips, including the need for people living with cancer to know their rights.  We hope you find it useful!



Guest blogger: Barbara Wilson

In the UK over 100,000 people of working age are diagnosed with cancer each year. 30,000 of these are people aged 25 to 49. A diagnosis of cancer is always shattering news but it’s particularly hard for those diagnosed at a young age. This is the period in life when you tend to be focused on building your life, your family and your career; a cancer diagnosis is a bit like a bowling ball tossed at a bunch of skittles – at the very least life, family and work all get knocked sideways.

Fundamentally, most cancer survivors of working age want to return to or remain in work. Work contributes to financial independence, provides a sense of purpose, provides identity and self-esteem, and creates structure and order in our lives.  It is also an important source of friendship and social interaction, and can be a lifeline back to normality, wellbeing and recovery.

However, a survey undertaken in 2012 as part of Shine Cancer Support’s ‘Small c Project’ revealed that nearly 53% of respondents stated they were unable to work in the same way as they did before their cancer diagnosis, with 13% saying they were unable to work at all. 31% reported that they were unable to work full-time as a result of their diagnosis and treatment.

Managing work after cancer can bring up many physical, financial and psychological issues. From a physical perspective, you may be coping with extreme fatigue, a fuzzy head or general discomfort during and following treatment while trying to show you are “still up to the job”. This often means people tend to come back to work too quickly – and clinicians rarely give useful advice about this, often advising people they should return to work ‘when they feel ready’. Moreover, it may be that you are relatively junior within the organisation and have a demanding boss who for whatever reason demonstrates increasingly impatient or bullying behaviour. A difficult boss might ignore a phased return to work plan and ask you to work late.  It can be incredibly difficult to say no under those circumstances.

Financially, many younger people may have taken on large financial responsibilities but, at this stage in their lives, have no financial cushion to support them if their sick pay runs out. Some companies have generous policies and offer full pay throughout treatment but many don’t.  It is worth finding out if you might be eligible for benefits or other forms of financial support (the Macmillan support line can advise you on this – dial 0808 808 00 00).

From a psychological perspective, many people affected by cancer lose confidence in their bodies or live with a constant background fear of the cancer returning. This anxiety, sometimes causing depression, can emerge for people of any age living with a cancer diagnosis, and it does tend to diminish over time, but for younger people, confronting mortality at a stage in life when it was least expected, is particularly hard.  Sometimes Occupational Health departments offer specialist counselling to deal with this anxiety, and some companies are now offering coaching and support services to help individuals come to terms with their cancer.  It’s worth investigating what’s on offer both through work and your hospital (where free counselling services are usually available).  Coaching to support return to work can also be very helpful and more information can be found about this on my website.

A great deal depends on the company’s culture and policy, and line managers have an enormous influence on the quality of support provided. In researching this blog, I spoke to a number of young adults with cancer and I was given examples of managers who had never experienced cancer who nevertheless went to amazing lengths to accommodate an individual.  I also heard other stories where the opposite occurred, with performance management procedures being threatened while an individual was on sick leave. Clearly, line manager education should be a priority.  In any case, it can be useful to research your rights and to make it clear to your manager how you’d like to work in the future.

Finally, please remember two key points:

Firstly, if you have been diagnosed with cancer you are protected legally from discrimination by the Equality Act 2010 and the Disability Discrimination Act 1995. It may not seem to be great news, but everyone with cancer is classed as disabled from the point of diagnosis for the rest of their life, and that means their employer or a prospective employer must not treat them less favourably for any reason relating to their cancer. All areas of employment are covered including recruitment, promotion, performance appraisal, training, pay and benefits.

Legally, employers have a duty to make reasonable adjustments to support a return to work. There is no fixed definition of ‘reasonable’; this will depend on the circumstances but adjustments might include:

• Offering light duties or alternative work on a temporary, reduced hours basis

• Allowing flexible working

• Allowing the individual to work from home for part of the week

• Allowing extra breaks to help cope with fatigue

• Allowing time off to attend medical appointments

Secondly, however tough it is, do keep your boss and human resources department (if you have an HR department) informed about what’s happening in terms of your diagnosis and treatment.  It may be that you don’t know how ill you are for some weeks, and during and after treatment you will have good days and bad, but if your boss doesn’t know how you are, they and your colleagues can’t support you as you would wish them to. Some bosses won’t be as supportive as you’d like but if you try and hide how you feel or carry on regardless it won’t help you recover or return to work any more quickly, and may well set you back.

Barbara is the founder of Working with Cancer, a social enterprise that provides coaching, support and advice to people living with cancer.  You can follow Barbara on Twitter @workwithcancer.  Macmillan also has a variety of useful resources available here.

Our Latest Infographic!

shine infographic_highres 2Well, you may have seen the draft already but here is our latest infographic showing the impact of cancer when you are in your 20s, 30s or 40s.

We hosted an online survey in 2012 and were surprised by some of the results – take a look and see if any of it surprises you…

If you are in your 20s, 3os or 40s and have had a diagnosis of cancer (at any age) then you can still complete our online survey here –

To see a larger version, just click the image to go to our small c micro-site.

Small c Steering Group


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!

Small c Event – 1st meeting of the Steering group!

18 August 2102

Today was the hottest day of the year in London and also the day of the first official steering group meeting for the Small c project.

Ceinwen & Laura after the meeting

The project is about designing and delivering a multi-day getaway/escape/retreat (not decided on the name yet!) for people with cancer in their 20s, 30s and 40s.

We aim to provide great opportunities for people to get together and meet others with similar experiences and also to access information and advice in areas that may have been  missing from their experiences of living with cancer.

Our nationwide survey of younger adults with cancer highlighted that there are many unmet needs when faced with cancer at this age and we aim to help fill the gaps.

The first steering group meeting was a chance to build on what we learnt at our first workshop which was held at the Maggie’s Cancer Caring Centre in London back in April. At this workshop we were joined by 23 people with various cancer diagnoses and experiences who were prepared to share their stories to help us understand fully the gaps in current services and how they thought these could be addressed.

At the Small c workshop in April 2012