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.

My post-cancer PTSD time-bomb

In this guest blog post, Shine community member Jen shares her experiences of post-traumatic stress disorder (PTSD) after breast cancer, and how these feelings affect her upcoming brain surgery for an unrelated condition.


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Meet Jen!

It seems that having cancer – and more specifically, months of treatment to be rid of that cancer – leaves you with a ticking PTSD time-bomb for future serious medical issues. No shit Sherlock, I hear you scream! I know – it seems obvious, doesn’t it? PTSD is just another one of the many, many things that nobody prepares you for when you walk through that hospital door after cancer treatment, merrily waving your goodbyes and looking forward to returning to your life. I had cancer at 36 and, touch wood, I am all clear so far. Given this diagnosis, it would seem pretty feasible that I might come up against another serious medical issue at some point. Why would nobody think to address the trauma of cancer? Mental health is yet another thing that sadly falls by the wayside for younger adults with cancer.

I’m sure that my experience of PTSD will resonate with others – and I hadn’t really dealt with, acknowledged, or understood the trauma until very recently. It makes perfect sense that what happens to us after cancer is going to be influenced by our experiences of diagnosis and treatment, just as all our other life experiences shape us and influence how we react and respond to future events.

I’ve learned that the actual ‘trauma’ of post-traumatic stress might be something that was not initially perceived as trauma. Trauma can be something that creeps up on you over time: it grows with you, in you and through you, slowly and steadily like a fungus. When you get diagnosed with cancer, there’s no time to deal with your feelings about it. Instead, you batten down the hatches and get on with getting through whatever you have to get through. There is a lot of information to take on board, but pretty much everything is out of your control. You are swept along on a rollercoaster ride from hell and when it ends, you are just thankful that you are still standing –  regardless of the state you are in, and the trauma that may have occurred along the way. You process your emotions in the months and years afterwards, and the trauma creeps up on you unexpectedly.

I have known for years that eventually I will need surgery on a slow-growing, benign brain tumour. It’s in a very awkward place. I have a condition called Schwannomatosis. It was diagnosed after cancer, so it seems that I am doubly special and unique! I have yearly scans and appointments with a specialist team of neurologists, and then I shelve it away for another twelve months and get on with living my best life. I’m pretty good at that! I genuinely don’t dwell on it. I had thought that this pattern would go on for many years to come so, other than the annual drama of getting a cannula into my chemo-destroyed veins (and a small amount of pain from time to time), I could almost live in happy denial. Unfortunately, in September 2018 this all changed: the little bugger had grown significantly in the past two years and if it continued, my eyesight would quickly become compromised. This means that I now need fairly complex and somewhat risky neurosurgery.

I am great at going to appointments and discussing all the details, from options to risks. But as I get closer to the operation, I’m not entirely sure how I am going to be able to let it happen to me! I know I have to, right? I know I do. It has to be done. It’s been planned and discussed, and I’ve been waiting for months. But the thought of having my body cut into again, damaged and broken, and drugs being pumped into my fragile veins? It just makes me feel nauseous, and that feeling triggers vivid memories!

It has been five years this month since my breast cancer surgery. Beforehand I had had four months of chemotherapy, and post-surgery I had five weeks of radiotherapy. My body has healed and my hair has regrown (sadly not my eyebrows, but I do have rather fabulous tattooed ones now!). I still ache though. I have radiotherapy damage in the bones and muscle on my chest wall, and I’m reminded of this when my kids hug me a little too tight. I have permanently painful toenails – first because they fell off during chemo, then from walking around the Isle of Wight (stupid me), and then from walking up Kilimanjaro (double stupid me!). I bruise easily, and my joints ache due to the drugs I take to keep the cancer from returning.

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Jen and her family

My youngest daughter has to hold my left hand rather than my right as she tends to tug and it hurts the back of my hand. My hand has never had a chance to recover from the onslaught of cannulas. I mention these things not as a sob story, but to explain that my instinct is to be very protective of myself.

I hate it when I hurt. I hate getting badly bruised if I clumsily walk into something. It makes me mad: disproportionally mad or disproportionally upset, depending on the situation. The thought of rocking up to a hospital voluntarily to check myself in for a lengthy, complex surgical procedure is obviously horrific – with or without the prior experience of cancer. Alongside these feelings comes an overwhelming, intrinsic, sense of self-preservation. I just don’t want my body to suffer anything more – it’s bounced back from so much, and I’m so thankful. This time it feels like I am choosing to do this to my body, and it will never forgive me!

Along with all these thoughts comes cancer guilt: the guilt that comes with survival when those with the same cancer and prognosis as you have gone. The guilt of remaining cancer free while friends get secondary diagnoses. The guilt of forgetting to be grateful every single day because there are people hoping for just one more day of life. The guilt of being stressed about one single surgery when there are people going through far worse in a desperate attempt to simply survive.

I have to have surgery. It sucks, but at least it isn’t cancer this time.

If you’ve enjoyed this blog, we’d love to connect with you! If you’re in your 20s, 30s or 40s and have had a cancer diagnosis, why not join our private Facebook group

Wellbeing and wildlife: how nature helps me feel better

In this guest blog post, Shine member Hazel writes about how getting outside helped her to cope with treatment for cervical cancer.


It was 2pm. I’d gotten out of bed at around midday, but I hadn’t bothered to get dressed yet or even brush my teeth. The cloudless blue sky and warming sunlight beckoned me to leave the house, but they were hidden behind my tightly shut window blinds. I sighed, disappointed in myself for not making the most of the glorious weather, and wrote it off as ‘one of those days’.

As the daylight faded I told myself tomorrow would be different. I set my alarm, laid out my clothes and put my binoculars and camera into my backpack. Tomorrow I would go out for a walk.

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Hazel on the chemo ward

After being diagnosed with cervical cancer in November I underwent four rounds of chemotherapy, twenty-five fractions of pelvic radiotherapy and three doses of brachytherapy (internal radiotherapy). After finishing treatment in January the reality of the whole experience sunk in and early-onset menopause began. Anxiety, hot flushes and night sweats, coupled with aches in my pelvis, often make it challenging to get a good night’s sleep. These conditions give me go-to excuses for not leaving the house, especially on gloomy, cold days, despite knowing that getting out of the house makes me feel so much happier. Listening to birdsong, looking for wildflowers and immersing myself in nature are the things that help me forget about cancer and just enjoy being alive.

The next morning, true to my intentions, I headed out to one of my favourite local nature reserves. It was a beautiful day again. I had another chance to get out and feel better. I walked under a canopy of huge beech trees with their smooth grey trunks flanked by stocky holly trees, listening out for birdsong as I went. Among the various tweets and chirps cascading around the woodland my attention was caught by a series of loud, high pitched ‘pip-pip’ calls. Over the past few years I’ve made an effort to learn the songs and calls of birds (you don’t need to know which bird is singing to appreciate the wonderful sound though, of course!). I recognised the ‘pips’ as being the call of a nuthatch: a beautiful little bird with blue-grey feathers on their backs, pale peach plumage on their bellies and a striking black stripe running across their eye. I looked up into the trees, scanning the branches in the direction of the sound. I soon spotted not one but two nuthatches, a male and a female, using their beaks to prise bark off a silver birch tree in which they were busily hopping from branch to branch. I stood perfectly still, trying not to disturb them.

I get so much joy from watching wild animals going about their daily lives, gaining insight into their behaviour. There’s no space for anxiety about the recurrence of cancer or worrying about the future in those moments because my full concentration is given to the bird, butterfly or other natural wonder that I am in the presence of. After a few minutes one of the nuthatches flew over to a tree, clinging to the bark with its powerfully clawed little feet. It cautiously paused to look at me before it began stuffing the bark it had collected into an old woodpecker-made hole in the tree’s trunk. They were building a nest! I’d passed that hole-laden tree many times and wondered what creatures might make use of it; now I was witnessing something I had never seen before and it felt like such a privilege. It brought a smile to my face which lasted the rest of that day, and returns now as I recall the details of the encounter to write about it. This is the kind of moment I need to remind myself of when I am struggling for the motivation to get out of bed!

More recently, after the familiar difficulty of getting an appointment at my GP surgery, a sympathetic doctor prescribed me an HRT drug. I could have hugged him, I was so overjoyed at the thought of getting some undisturbed, hot-flush-free sleep. Unfortunately, upon consulting every pharmacist in the locality, I found the drug was unavailable with no timescale for when it might be back on the shelves. In my despair I sat and cried in my car.

I knew I didn’t want to be out walking on reserves looking and feeling as I did, so I sought solace among the plants and wildlife at home in the garden. Gazing into the pond I watched smooth newts: males with their striking, spotted breeding season colouration, and sand-coloured females. Their tails quivered, propelling them to the surface. They paused, suspended just long enough to take a gulp of air before descending back to the bottom of the pond, leaving a trail of tiny bubbles. There were also dragonfly nymphs, formidable predators in this tiny underwater world, sitting motionless and deadly. Some of our largest dragonflies spend up to four years in this form before crawling up the stems of plants and emerging as the beautiful adult winged insects (which live for a maximum of only seven months). With very little effort, my sadness and frustration had diminished, replaced by the childlike wonderment of watching newts and dragonfly nymphs.

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Hazel working at sea as a wildlife guide in 2017,
specialising in whales, dolphins, porpoises and seabirds

Of course we are all entitled to days when we just don’t feel like going out, getting dressed or getting out of bed, and there is no shame in that. Our bodies need rest and time to heal. Comfy clothes, chocolate and binge-watching your favourite TV series can be hugely therapeutic! For me though, there’s nothing like getting outside, even if just for half an hour, to seek out wildlife encounters and marvel at nature. In those magical moments my cancer might as well not exist; I don’t give it a thought because I am consumed in marvelling at the beauty of the natural world – and I feel so much better for it.

 

Shine Connect 2019: a participant’s experience

In this post, Shine’s blog editor Caroline writes about her first time at Shine Connect, our annual conference for people in their 20s, 30s, and 40s living with and beyond cancer.


I discovered Shine Cancer Support when I was first diagnosed with cancer in early 2017. I felt completely lost and as I clawed around in the dark, trying to make sense of the incomprehensible, I found the Oxford Shine network. I started going to local meet-ups, and then I was lucky enough to get a place on Shine’s Bournemouth Great Escape. I’ve been to Shine Camp, I’ve completed a fundraising 50km hike, and I also volunteer as Shine’s blog manager. If I could bear to look when the cannula goes in, I might even be able to confirm that I bleed orange too – who knows?

I’d never made it to Shine Connect though. I have anxiety that sometimes makes it harder to spend time with large groups of people and besides, who wants to give up an entire spring Saturday to talk about cancer? As it turns out, approximately 150 other young people with cancer! As May rolled around, I decided that this year I was going to give Shine Connect a try.

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Neil, one of Shine’s employees, greets some conference participants!

I’d signed up to attend the pre-conference breakfast, so I had an early start to get into central London from my home in Oxford. I arrived at The King’s Fund to coffee, delicious pastries and a big Shiny welcome! Each attendee (including me) had been matched with a Shine volunteer, which meant that I immediately found myself chatting with a small group of people, including one who had travelled all the way from Scotland just to attend Connect!

The conference began with a short welcome from Shine founders and co-directors Ceinwen Giles and Emma Willis, during which they introduced the charity and re-launched Shine’s small c project.

Second on the main stage was a panel discussion with Shine members Charlotte, Precious, Dan, and Chris who chatted about their own experiences with cancer and, in Chris’s case, what it’s like to watch a loved one go through treatment. I find it really useful to hear other young people’s stories. Regardless of the type of cancer, there are plenty of commonalities. The panel discussion picked up on a lot of themes that were then explored in talks and workshops throughout the day.

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Panel discussion on living with cancer at a young age.

There were lots of workshops to choose from but I’m really interested in improving my fitness to make sure I can live longer with my lung metastases, so I joined the session ‘Getting active after a cancer diagnosis’, led by Gemma Hillier-Moses from Move Against Cancer. Once Gemma had us all warmed up with a group attempt at the Cha-Cha Slide (so happy that there are no photos of me!), she talked about Move Against Cancer’s online programme for under 30s, as well as their popular 5k Your Way initiative. As someone who repeatedly sets herself challenging fitness goals but then gives up when she fails to achieve them, my biggest takeaway from the session was that movement doesn’t have to be structured. Going out just to run, rather than run 5km or run for 30 minutes, can relieve some of that ‘pressure to perform’ that we often experience. A brilliant tip!

Lunch provided the opportunity to share stories from the morning sessions, make the most of the delicious hot buffet (I’m still dreaming about the chocolate bread and butter pudding!), and meet the exhibitors in the marketplace. I snuggled the therapy dogs, picked up some lovely free moisturiser from Jennifer Young, and chatted to researchers about the specific needs of young adults with cancer. I also managed to catch up with some friends from the January 2018 Great Escape, which was great.

In the afternoon I opted for the ‘Managing Relationships’ workshop, led by Emma and Rosie from Shine. We talked about how the relationships with our family, friends, and colleagues have been affected by cancer, and the session felt quite emotional. Although I’ve taken part in similar discussions before, I still left the workshop with some fresh perspectives and new ideas.

After a quick cup of coffee (and scones and brownies!), all the conference delegates gathered for the keynote presentation: neuropsychologist Dr Stuart Anderson talking about the dreaded ‘chemo brain’! Dr Anderson put our cognitive skills to the test with a couple of simple but challenging exercises, then explained some of the scientific literature on the topic. I’ve never had chemotherapy but I’m sure that cancer has affected my brain cells – so it was good to hear that ‘chemo brain’ is also known as cancer-related cognitive impairment, and neurotoxicity from chemotherapy is only one of the many suggested causes. I can blame my poor memory and attention span on cancer after all! Thankfully, Dr Anderson closed his presentation with lots of helpful brain training app recommendations – so hopefully I’ll be able to concentrate again soon.

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Keynote speaker, Dr. Stuart Anderson talks about “chemo brain”.

Emma and Ceinwen closed the conference by thanking the event organisers TTA, the speakers, and all the excellent marketplace exhibitors. After a final group photo, it was time to open the bar! I had a fantastic time at Shine Connect and the day flew by. I’ll be back next year – and I hope to see you there?

Meet Neil: Shine’s newest employee!

We’re growing again! Meet Neil, our new Shine Network Support Officer. In this post, Neil shares his experience of having a malignant brain tumour and talks about how his life post-diagnosis led him to working for Shine. 


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Good times!

Hi everyone! My name’s Neil and I’m Shine’s new Network Support Officer. I am originally from Scotland but these days I live in North London. Previously I worked for a mental health charity which focused on social inclusion and co-working with volunteers, and I have been a member of Shine for a few years now. It brings me so much joy that I am now able to join Shine in supporting young adults after a cancer diagnosis.

I first discovered Shine while I was awaiting an oncology appointment at the Royal Marsden Hospital. In November 2016, when I was just 26 years old, I was diagnosed with a medulloblastoma, which is a cancerous brain tumour. I was working as a bar manager but was told by doctors that due to my dizziness, partial deafness and fatigue, I wouldn’t be able to do this anymore. It was a real shock to me that I wasn’t this invincible person that I’d always thought I was! I had surgery, followed by radiotherapy, and then a difficult recovery. During this time I suffered with some mental health issues. I moved back to Scotland after my diagnosis and my family and friends did such a wonderful job supporting me. While at home I attended counselling through Maggie’s which helped me to begin to understand all the trauma that had come from having cancer. When I moved back to London I started CBT therapy. This was awesome and I believe it really changed my life. I hadn’t realised that I had quite a negative voice inside my head, and being kind to myself continues to be such an integral part to my mental well-being.

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The scar from my operation for medulloblastoma

I was unemployed and having an awful time with my benefits, so I really wanted to get back to work as soon as I was ready. I went to my first Shine meet-up after days cooped up at home, and I thought they must have found me annoying as I had so much energy! To my delight I was completely wrong and I really enjoyed being around people who just ‘got it’. Some people in my life  didn’t care about me as much as I had thought they did, and I found myself in a really lonely place. The meet-ups helped with this, but since my treatment I had been quite shy about meeting new people and without working, I struggled to understand my place in society. I saw a post in Shine’s private Facebook group that invited men to apply for the Great Escape, a weekend in Bournemouth for 22 young adults affected by cancer. I applied and was accepted. It was life-changing for me (totally amazing!), and really made me want to focus on moving forward with my life. I met some lifelong friends and would highly recommend anyone who is interested to apply.

At my next Shine meet-up Clare, one of the London Network Leaders, recommended that I try some volunteering in my ongoing search for employment. I felt totally lost as I didn’t have a clue what I could do with no exam results (I was a naughty wee boy!), but I managed to start volunteering at a youth homeless shelter. I loved this. Many of the residents had mental health issues and I realised I had a keen interest in supporting this. I also recognised myself in some of them. After this I began volunteering for a charity that supports people with mental health issues. After two months I applied for a job at the charity and I was successful. I broke down in tears when they called me – and then I phoned my parents afterwards and sobbed away again! It felt like such a difficult road but I had got there, and my kind voice in my head gave me lots of compliments!

 

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My family have been very supportive of me

Since my treatment I had struggled with a loss of confidence, which was especially noticeable when dating! Complimenting someone when on a date was just beyond me, and I would get quite upset afterwards if I didn’t think that the date had gone well. Clare and Jess (another Shine London Network Leader) host a dating session at Shine Connect, which is Shine’s annual conference and the only one in the UK supporting young cancer patients in their 20s, 30s and 40s. I picked up some tips from them which really helped me to just treat each date as ‘practice’ and not get myself so hyped up beforehand. My best mate also kept on at me to ‘get the old Neil back!’. These days my confidence is much better.

After eight months in my charity role, I noticed that Shine was hiring for a Network Support Officer. I realised that the experience that I had in my current position, and the skills I’d picked up in previous management roles, made me a very suitable candidate – so I applied. Learning that my interview had been successful was another life-defining moment for me. And that really just brings us to now!

I am really passionate about helping people and I believe that that is my purpose on this world. If I could’ve spoken to myself during my bad times, I would’ve told myself to keep going. Don’t beat yourself up, and things will get better. Be patient and just take everything one day at a time. Make sure you are kind to yourself!

Thanks for taking the time to read this, and I hope to see you at an event soon!

What I wish I’d known before radiotherapy

Are you about to start radiotherapy as part of cancer treatment? Cancer treatment of any kind can be a daunting experience, so we’ve consulted the Shine Cancer Support hive mind to ask: what do you wish you’d known before you started radiotherapy? Read on for our members’ words of wisdom! 


1. I wish I’d… checked out the treatment centre

Any hospital appointment can be stressful – especially if, thanks to cancer, you find yourself there almost every other day. Not knowing where you’re going, or what you’ll find when you get there, can add to the anxiety. Many of our Shine members said that they had been offered tours of their radiotherapy centre before treatment which helped them to prepare both mentally and physically. If you haven’t been offered a tour, it’s always worth asking for one. Don’t be shy about explaining why you would like to see the treatment area beforehand – if you think it will make it easier for you to handle the treatment, it will also make it easier for the staff to administer it. Everyone wins!

A short tour will enable you to ask specific questions about your type of treatment. Sarah, who had head and neck radiotherapy, found having to wear a mask for her treatment the most difficult bit, but she learned that ‘they can adjust it if you need it’.

2. I wish I’d… known what to wear

What you are able to wear to radiotherapy will depend on which area of your body is being treated. It’s likely that you will need to remove some of your clothing, but you may want to dress in a way that means you have to take off as little as possible. And don’t take off too much! One of our Shine members learned the hard way that she didn’t need to remove her underwear to receive pelvic radiation…

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It can get chilly in the radiotherapy room…

Our Shine community agreed almost unanimously that it gets very cold in the treatment room! If you need to take off your jumper and you start to feel chilly, know that you can always ask for a blanket.

3. I wish I’d… known that it would take a while

It might not take very long for you to get ‘zapped’, but you will still find yourself hanging around for a while. Shine member Becky says that ‘although treatment only takes a couple of minutes, you can be lying on the hard bed for 30mins+ while they set it all up!’ Alison says that for her treatment, ‘the waiting is even longer than chemo.’

Waiting can be particularly difficult. Pauline says ‘I wish I’d been told to leave my dignity at the door!! A group of people will be chatting away like you’re not there (but actually lying half-naked) and then they’ll be getting their protractors out and doing sums!! (“87”, “2.1”, “84.9”).’

Finally, a tip for speeding things up if you’re having pelvic radiation: let it rip! One of our Shinies says that ‘any “air pockets” in your bowels can slow down the process!’

4. I wish I’d… applied cream more effectively

You will be advised to apply creams, such as aloe vera or E45, to the affected areas to help with radiation burns. Ask your team which topical lotions or ointments they would recommend.

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Keep the cream handy

Emma, who had radiotherapy for breast cancer, says ‘I wish I’d been shown exactly where the treatment would hit. I was very good at using cream, etc. where I thought it was, but I didn’t know there was a part of my neck that would be treated, and this ended up with a horrible burn that is still scarred.’ One Shine member said that her radiotherapy treatment also burned the skin on the other side of her body, which she hadn’t expected. Check with your radiotherapist about where you should apply cream, and when.

Shine member Meera wishes that ‘they’d told me to use aloe vera on the skin before the burns started, not after.’

5. I wish I’d… been warned about the side effects

If you haven’t been told already, ask what types of side effects you can expect from radiotherapy treatment. Many people experience nausea and fatigue, for example, but you might experience other side effects depending on the location of your treatment.  Fiona, who had pelvic radiotherapy to treat bowel cancer, says ‘I would definitely say that you need to plan your life so you’re not far from the loo during treatment. Especially if you have a drive to work after being zapped each morning. I got to know the petrol station loos en route really well.’ Macmillan offers a free toilet card that might be helpful in situations where a public toilet isn’t available.

Georgina, who had head and neck radiotherapy, recommends stocking up on ice cream, or anything else that might be able to soothe a dry cough, or alleviate any swallowing difficulties. If you are having other types of cancer treatment, such as chemotherapy or immunotherapy, at the same time as radiotherapy, there may be certain foods that you can’t eat. If you’re looking for something soothing to eat or drink, you might also want to ask your oncologist what they recommend.

Katherine says she wishes she’d known that ‘surgery scars tighten up after they are zapped.’ Ask your medical team if they have any suggestions for alleviating pain or discomfort from this, or from any other radiotherapy side effects.

Shine members also shared a number of long-term side effects that they hadn’t anticipated – for example, Pelvic Radiation Disease. After head and neck radiation, Shinies reported long-term effects on their eyes, swallowing muscles, and salivary glands. Ask your team whether they anticipate any long-term side effects, and what you – and they – might be able to do in order to minimise the risks.

6. I wish I’d… known how other people would react

If you’ve had any type of cancer, chances are you’ve experienced some strange reactions from friends, relatives, or the lady who lives down the road. One Shine member who received radiotherapy said that some people thought she was now radioactive, and ‘dangerous to be around’ during treatment. Others reported that people who hadn’t been through a cancer diagnosis didn’t seem to think that it was a big deal: ‘oh, it’s only radiotherapy.’

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Other people’s reactions can be distressing

If someone you know is struggling to understand how radiotherapy treatment is affecting you, you could direct them to articles (such as this one!) that provide some background. Macmillan, Cancer Research UK, and Cancer.net have some helpful resources.

Alternatively, if you’d simply like a place to vent about the latest comment you’ve received, you can check out our private Shine Cancer Support group on Facebook and find lots of sympathetic ears!

Do you have any more tips for people about to undergo radiotherapy? Let us know in the comments!