I’ve got cancer – where’s my casserole?

In this post, blog editor Caroline writes about the expectations we can have about friends and family when we go through cancer treatment, and what we can do when the reality isn’t quite what we’d hoped.


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I’m still waiting…

I thought I knew what cancer looked like, long before I received my diagnosis. Cancer is everywhere. Like most of us, I’d seen the films, read the books, and even written my own cancer-themed fiction as a particularly morose young teen (!). Cancer meant harsh treatments, hair loss, and silk scarves. Breaking Bad aside, most fictional representations of cancer seem to rely on a few key tropes: cancer patient looks pale, languishes in bed, and is called upon by kind-hearted family and friends who bring endless casseroles and work hard on fulfilling the all-important bucket list. And if you’re a really lucky cancer patient, you might also get a handsome model to hold your hand through chemotherapy – just like Samantha in Sex and the City.

I’ve been living with cancer – now incurable – for just over two years, and it still surprises me to write that I haven’t ticked many of these ‘TV cancer’ boxes. I’ve had a few operations, but I’ve been hospitalised just once. I haven’t had chemotherapy (instead, I had immunotherapy) and I still have a full head of hair. My skin glows an acceptable amount (which is not something I find myself saying very often). Friends have gathered at my bedside – once, for a post-op takeaway – but I’ve never had any offers of help to fulfil my bucket list. And I still haven’t received a casserole!

The ubiquitous ‘cancer casserole’ was one of the topics that came up in the Relationships workshop at this year’s Shine Connect. While many conference attendees spoke about the wonderful support they’d received from friends and family, there were also plenty of young people with cancer who felt let down by the reactions they’d seen upon being diagnosed. Cancer rarely looks the way it does on TV, which can confuse us and the ones we love. So when we really want a casserole (or a bucket list safari adventure) and it isn’t coming our way, what can we do?

Don’t take it personally

If you are abandoned by friends or family in your hour of need, it will hurt. I’m sorry. A cancer diagnosis at any stage is a life-or-death moment – and as anyone living with cancer will tell you, its effects last a lifetime. It’s incredibly hard to cope when close friends decide that this is the time to leave you to your own devices, and even more difficult when family members also choose to keep their distance. Isn’t your family supposed to show up for you, no matter what?

Try not to take others’ behaviour personally. We all tense up when we hear the word ‘cancer’ – and the diagnosis you’ve received will have made an impact on everyone in your life. Some friends may be too scared to confront the fact that someone they love has a life-threatening illness, while others might find themselves reflecting on their own mortality for the first time. Cancer seems like an old person’s disease (how many smokers do you know who say ‘yeah, I’ll probably get lung cancer when I’m older, but I don’t care’?), so getting a diagnosis in your twenties, thirties, or forties is particularly shocking. Some people run towards danger, while others run for the hills.

Cancer doesn’t necessarily bring people together the way it does in films. For each person who decides to rekindle a childhood friendship and drive across the country to take you to chemotherapy, there will be another who crosses the street to avoid bumping into you outside Costa. My own experiences of friends, family, and cancer taught me that if I had a strained or distant relationship with someone before my illness, my life-or-death situation wasn’t going to be the glue that mended us – however much I might have wanted it to be.

Lower your expectations

It can be difficult to lower your expectations when it comes to friends and family, particularly when social media is awash with other people’s stories of being supported through a cancer diagnosis – or you turn up to treatment to find that you’re the only one on the ward who doesn’t need a ‘guest chair’. So your living room isn’t awash with flowers and cards? While many people may be worrying about you, it might not occur to them to communicate their thoughts through gifts or surprises. But is there someone who remembers to text you on treatment day, or asks follow-up questions when you casually mention that you can’t meet them for lunch because you have a medical appointment that day? They might seem small, but those interactions can be just as meaningful as a box of chocolates or a stack of magazines – and they show that you haven’t been forgotten.

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Who needs brownies anyway…?

Ask – or encourage a friend to ask on your behalf

Sometimes friends and family don’t show up because they don’t know what to do. One of my friends told me that she didn’t get in touch while I was on long-term sick leave because it was an emotional time, and she thought that I would need space. In difficult situations, friends might treat us the way that they would want to be treated – and sometimes that approach can be different to what we expect. Personally, I didn’t need ‘space’ during immunotherapy. I’d have preferred it if people had come over for a chat, had dinner, or just hung out and watched TV. If you think that some of your friends have misjudged the way that you would like to be treated, ask them to do something different. It would be brilliant if we were all mind readers – and managing your friendships can be exhausting when you’re also managing your health, and worrying about the future – but asking for specific support may save you some heartache. If you don’t feel up to it, see if you can enlist a close friend or relative to quietly speak to others on your behalf.

Vent – to someone who gets it

Even the most understanding friends and members of your family will always be outsiders. They have to process their own feelings about your cancer diagnosis, and you can’t control that. They might be able to listen to how you feel, but if they haven’t been through cancer themselves then they may struggle to understand. And that’s where Shine comes in! We support thousands of people in their twenties, thirties, and forties who are living with and beyond cancer, and we provide a safe space to share stories and experience, as well as just have fun. Nobody will understand you as well as someone who has been through similar struggles, and made it out the other side.

If you’d like to chat to other young adults with cancer, why not join a Shine Network meet up, or our private Facebook group?

 

 

Pasta photo by sheri silver on Unsplash.

Flowers and brownies photo by Alisa Anton on Unsplash.

ReFresh: a retreat for cancer support organisations

In this post, Shine Director Ceinwen writes about her experience of visiting US cancer charity A Fresh Chapter.


At the start of April this year, I found myself nervously crossing a yellow line in the carpet at San Francisco International Airport, ready to present my passport to a border guard. As he looked through the pages of my passport, he asked what brought me to the US.

“I’m attending a retreat for people who work in cancer support organisations,” I told him.

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Shine Director, Ceinwen

He paused for a minute – always a nerve-wracking moment at the border, especially these days – and then asked me if I’d experienced cancer personally.  I explained to him that I’d had non-Hodgkin lymphoma nine years ago but that I was doing well now.  He paused again, stamped my passport and told me that he would ‘thank God’ for my health. And then he sent me on my way. It was not at all the grilling I was expecting, and that pretty much set the scene for the rest of my week in California!

What brought me to California in the first place was being selected to join A Fresh Chapter’s ReFresh Retreat for Leaders. A Fresh Chapter is a US charity that combines volunteering in the US and internationally with the aims of reframing adversity, fostering connections, and promoting personal growth and development. Their ReFresh retreat is unique in that it aims to provide support to ‘cancer advocates’ – the people who work in cancer care and support – and to give them time and space to reflect on their work, develop new leadership skills, and gain fresh perspectives.

When I heard about ReFresh from a friend of mine, I knew that I wanted to go. I love my work at Shine and have worked hard for the last seven years, but it’s not always easy. Having experienced the death of more than a few of our Shiny people over the years, I thought it was probably a good time to take a short break.

It’s pretty hard to summarise a five-day retreat. We covered a huge amount of ground, worked with a heap of different tools, and had some much-needed time for reflection. Having said that, a few things have really stuck with me and I thought I’d share them here.

The value of gratitude

This is very un-British (in fact, the entire retreat was pretty free from both British irony and sarcasm – but in a good way!), but we spent quite a bit of time at the retreat thinking about gratitude and how we recognise it. On the second day of the retreat, we woke up early and headed to Glide, a charity that feeds the homeless in San Francisco. We spent a few hours cooking and serving food to Glide’s clients. Homelessness is a huge issue in San Francisco and one of the things that had struck me in my wanderings in the city was that so many of the people on the streets were not only homeless but also very clearly

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San Francisco – a gorgeous city, but with a huge homeless population.

physically or mentally ill (or both). If you’re ever looking to feel grateful about the NHS, bearing witness to sick people living on the streets is a pretty good reminder of why we need to fight to keep the NHS working.

I also came out of my experience at Glide grateful that I hadn’t taken up a job in catering: while I was smugly chopping onions for a tuna salad, the knife slipped and I cut my thumb open. ‘You’re OFF THE KNIVES!’ yelled Bobby, one of the managers, in a very good-natured way. He then had me dip chicken breasts into breadcrumbs for chicken parmigiana – a task that involved absolutely no sharp objects! Working at Glide was also a good reminder of how we can connect to people with vastly different experiences to us. As we were sweating in the kitchen, my ReFresh buddies and I were often interrupted by Glide clients who wanted to share a joke or two. Given the huge societal divides we’re experiencing in both the US and the UK, it felt pretty good just to be able to laugh with others, human to human. And I felt grateful.

Holding space

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This house in Marin County was the perfect venue for a retreat.

I know that listening is important. I’ve done training in coaching and facilitation, and have been taught in numerous different ways about the value of listening. But when I’m busy, I forget. I lose my curiosity and stop listening because I feel like I’m short on time and I have stuff to do. One of the best things about the retreat was having the chance to speak less and sit back and listen, and also to retrain myself in the art of being curious – in other words, to hold and create the space for others to tell their stories. On the first day we were reminded that we didn’t always need to dive into our ‘mental filing cabinets’ to find a story or anecdote equivalent to the one being shared by someone else. Sometimes it’s enough to sit, listen, ask the odd question or even be silent. Everyone on the retreat had had their own experiences of cancer, but they were also hugely interesting people. By trying hard to listen, I feel like I learned a lot more than I might otherwise have done in five short days.

It’s easier to do than to feel

We heard lots of words of wisdom while we were away, but this one sentence really stuck with me. I like being busy, but lately I’ve been piling things up without giving myself time to think or feel. Part of this, I realised, is because letting myself feel means that I have to let myself feel sad about friends I’ve lost over the years – amazing, spirited, and funny people who made life better for everyone. Cancer, like any major illness, is unfair and quite frankly, I don’t like thinking about its unfairness.  However, this approach also means I don’t get to think about all the good times I’ve had with my missing friends, and it also means that I exhaust myself. My boom/bust cycle could use an overhaul so I’m hoping the rest of this year might be slightly more relaxed. We’ll see…!

Perhaps the most valuable thing for me though was spending five days reminding myself that, in these troubled times, the world is still full of good people. Sometimes it can feel like cancer takes up a lot of space in my life, and although everyone on the retreat either had had cancer or worked in cancer support, we spent a lot of time talking about other things and I learned a ton! Almost as valuable as the Fresh Chapter tools were the conversations I had about everything from women’s cycling and how to save yourself from a mountain lion attack, to why sloths sometimes visit libraries in the Midwest and how to make balloon astronauts.

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With (on!) some of my retreat buddies.

And finally: it was a real treat for me to be at an event that I wasn’t organising! If the schedule was running late, or the food wasn’t quite right, I felt relieved that I didn’t have to deal with it (and huge thanks to Terri, Janet, and Dana who did have to deal with it all)! As a tiny charity, Shine runs a large number of events and that means that we’re often simultaneously facilitating discussions on serious topics while worrying whether the food order will arrive in time for lunch. Having a break from the everyday, and a chance to think about how the tools used by a Fresh Chapter could be applied to the UK, was really valuable. I’d do it again in a heartbeat.

If you’re working in cancer support or are coping with cancer yourself, make sure to check out A Fresh Chapter’s programmes!

 

The lowdown on benefits entitlement

In this guest blog post Tom Messere, Online Benefits Advisor at Maggie’s Cancer Care, introduces social security entitlements and benefits that can make a real difference to people of working age who are affected by cancer. This blog is adapted from the first of four for all ages available at maggiescentres.org.


Cancer brings extra costs: trips to hospital, keeping warm at home, additional food costs, new clothes if your size changes or if you need surgery, and even the odd well-deserved treat when feeling a bit fed up.

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Money can be tough when cancer is diagnosed. But benefits are there to help.

For those of working age, a long period of sickness – or time out if you are a carer – can also start reducing income, as even the best sick pay/insurance doesn’t last forever.

A Macmillan report found:

  • four in five people experience a negative financial effect of an average £550 a month
  • 30% also experience a loss in income of an average £860 a month

Claiming your entitlements can make a real difference. The problem with benefits is not the fraud that’s highlighted in the media (DWP put this at 0.7% of total spending). Rather, there’s a much bigger, more hidden issue of people not claiming what they should (estimates suggest some £25 billion a year). Don’t let that be you!

Barriers to benefits

There are many reasons why people miss out: not knowing which benefits might apply, ruling themselves out, hearing negative messages about claiming, or just finding the process too complicated. Others do claim, but may be wrongly turned down or underpaid.

There is a particular low take-up for means-tested benefits (due to extra complications and intrusiveness around finances) and disability benefits (linked to ‘well, I sort-of manage so I can’t apply’).

Hopefully this blog will encourage you to feel less overwhelmed, and enable you to seek out free, confidential advice.

Benefit myths

A cancer diagnosis doesn’t automatically qualify you for a benefit. Health-related benefits depend on treatment plans or an assessment of the difficulties you experience, and cancer-related issues can be hard to put into words. However, many people with cancer find they can claim something, particularly if they have assistance with their application.

You might get both a sickness and a disability benefit if you are too unwell to work much. As you recover you can do some work while still getting sickness benefits, but as you do more, these may stop. Disability benefits can carry on – even in full time work – for example if you are still experiencing late effects of cancer or treatments.

Some benefits do involve a financial assessment, but the majority do not. Even when finances are an issue, entitlement can go higher up the income scale than you might think.

But what if there are others who need the money more than me?

It’s quite possible that there will be others that need financial support more than you – and others who might need it less. Yet you may all qualify, perhaps at different rates. Benefits do not come out of a fixed pot, so you getting an award – or selflessly not claiming – has no effect on another person’s chances.

If I claim benefits, am I a charity case? Have I lost my independence?

It can be hard to claim benefits, especially with a lot of negative media coverage and political discussion. However, modern social security started at the same time as the NHS and was based on the same principles of ‘all being in this together’. You pay in over the years (your ‘contribution’) – and continue to do so while claiming – to get the financial and medical help when you need it. Think of a claim as the same as house or car insurance – all ways of sharing the risk.

But isn’t the benefits system impossibly complicated?

Benefits can feel like a maze at times. But with some information and advice it is far from impossible to make a successful claim.

Three steps to full entitlement

The benefits system can seem really tricky but it might help to think about applying for financial support in three stages.

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The benefits system can seem really complex – but there are ways that you can get through it!

First, consider the basic non-means-tested benefits to replace earnings from work, when either you can’t earn at all or can only earn a little (e.g. when easing back into work after treatment).

These benefits include Statutory Sick Pay (SSP), Contributory Employment and Support Allowance (C-ESA), and Carer’s Allowance (for carers). They are also called ‘overlapping benefits’ as you might qualify for several but can only usually receive the highest.

Ask yourself: can I qualify? Which benefit is best for me? Is it ever worth claiming more than one?

Second, look at means-tested benefits and tax credits. These benefits:

  • Guarantee a basic minimum income either instead of SSP and C-ESA or as a top-up, e.g. income-related ESA when off sick or Income Support for carers.
  • Help with specific costs, e.g. children, rent, council tax, or health costs.
  • Can provide extra support to those in work. You can do some work while on ESA and then move on to Working Tax Credit when you can do more.

Big changes are afoot with means-tested benefits, as many of the benefits mentioned above are merging into Universal Credit (UC). Both systems run alongside each other until December 2023.

Ask yourself: Do I claim ‘legacy benefits’ or UC? And if I have a choice, which system works best for me? Am I claiming all the ones that apply? Have they got the sums right to include extra amounts relevant to me?

Third, consider other non-means tested benefits that can help with extra costs of daily living and getting around. Personal Independence Payment (PIP) is the main one in working age that can often apply after a cancer diagnosis. It is always non-means-tested, payable in or out of work and on top of any other benefits. It allows a carer to claim Carer’s Allowance and is ignored as income in means-tested benefits sums. Sometimes it can even increase entitlement to those benefits!

PIP is hugely underclaimed. It can be straightforward in many advanced cancers, but claims can be puzzling for the majority of people with cancer who face the full assessment. Expressing the difficulties that go with cancer can feel tricky, as they often don’t stop you doing things, but do make everything feel harder.

Ask yourself: Might I get PIP? Can I talk to an advisor before beginning an application? Can I look at other disability benefits, if my cancer might be linked to work history or service in the armed forces?

Benefits are not handouts, and you are entitled

A cancer diagnosis doesn’t guarantee benefits, but it makes some quite likely. Savings or a partner’s income might rule out some help, but never all help. It will be very rare for a Benefits Advisor to find nothing to support you.

Benefits can really help with the cost of cancer but myths, concerns and some media/political debate can all discourage claims. Add in worries about the process involved, reduced energy, and some dodgy decisions, and billions go unclaimed each year. Claiming helps you save NHS and social services resources too. Please don’t miss out!

You can find out more on all of the benefits mentioned and how to apply via further blogs and forums available at Maggie’s Community.

Good luck, and never knowingly underclaim!

 

If you would like to contact Tom and seek further benefits advice or support, you can do so via the dedicated area in the Maggie’s Community forums.