We’ve got news!

Are you wondering why you haven’t heard from us in a while? The Shine Cancer Support blog has migrated to our brand new website (yessss!) and we’re now sharing our latest posts there.

We’re working on moving across all our regular subscribers, but in the meantime why don’t you check out our blog’s new home?

Last week we shared a Shine member’s insight into the realities of living with incurable cancer, and over the coming months we’ll be sharing more stories from our Shine community. Stay tuned for features on patient advocacy, cancer and computer games, our very first workshop for young adults with incurable cancer, and more!

The world may be in turmoil at the moment, but we remain committed to supporting people in their 20s, 30s, and 40s who are living with and beyond cancer.

How has Covid-19 affected you? We’re collating young adults’ experiences of cancer and Covid-19 and we would love to hear your thoughts. Complete our quick survey to let us know how the pandemic has affected your cancer treatment.

Or maybe you fancy sharing your experiences with us on our blog? Get in touch at blog@shinecancersupport.org.

The power of music: our Shine cancer playlist

In this blog post, Shine Network Support Officer Neil shares some of the songs that helped members of our Shine community during and after cancer treatment.


At Shine Cancer Support, we know first-hand the difference that music can make when you are going through cancer treatment. When I was going through radiotherapy I banned the staff from playing their music (One Direction and Abba – not my cup of tea!) and played my own music instead to feel like I still had some control. After treatment finished and some of the real difficulties with my physical and mental health emerged, I found that music was the key to helping me deal with my emotions.

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Blog post author Neil, who is not a fan of One Direction

After a few posts in our private Facebook group regarding music, we thought we might create a Shine playlist. These are the songs that members of our community feel have helped them. Hopefully there are a few gems here that you can uncover for yourself!

Katy Perry – ‘Roar’

Our Oxford Network Leader Sam said that this song helped her get up and about during recovery.

Coldplay – ‘Up&Up’

Angela said that her friend played it to her during chemotherapy and the lyrics make her very emotional – especially the last line. Listen for yourself and see what you think!

Mellah – ‘Cigarette Lighter’

Sean suggested this song, so I checked it out. It’s something a bit different and really worth a listen. I really like the line ‘I’ll keep walking’.

Sia – ‘Angel By The Wings’ and Jess Glynne – ‘I’ll Be There’

Hazel said that Sia’s music really helped her – especially this song, with the lyrics ‘You can do anything.’

“This is the one song I played repeatedly whilst undergoing treatment – the lyrics perfectly matched how I was feeling. it repeats ‘you can do anything’; she almost shouts the line out at the top of her lungs and it made me feel empowered. It’s just such a powerful, beautiful song.”

Hazel also listened to the Jess Glynne track ‘I’ll Be There’ a lot.

“It’s an uplifting song, great for singing along to and, whilst I guess it is meant to be about people being there for you, it actually helped me to feel I could support myself. After feeling let down sometimes by others during my illness and treatment, this song made me think ‘I’ve got my own back’.”

The Greatest Showman – ‘This Is Me’

Shine member Rachel found these lyrics apt, if a bit cheesy!

Foo Fighters – ‘These Days’

Joe said that this Foo Fighters song helped his wife. He encourages her to play it at his funeral as a message to anyone trying to tell her that things will be OK.

Soul Fly – ‘Fly High’

Shine member Neil thinks that this is a really positive song.

Elton John – ‘I’m Still Standing’ and Mary J Blige – ‘No More Drama’

According to Jacqui, her first song choice doesn’t really need an explanation! She related to ‘No More Drama’ a lot and would blare it out in hospital.

Avenue Q – ‘For Now’

Jenni told me that this song reminded her that whatever she is going through, it will pass.

Marconi Union – ‘Weightless’

Yulia recommended this track for some relaxation and meditation.

Rag‘n’Bone Man – ‘Human’

I picked this song from a long list of Jenny’s favourite music. It’s one that a lot of fellow Shiny folk could relate to!

Fleur East – ‘Girl On Fire’

Jo chose this song because it reminds her of a great friend and fellow Shine member who died.

Sara Bareilles – ‘She Used To Be Mine’

This song resonates with Karen, who relates this song to her feeling of becoming a different person after cancer.

RuPaul – ‘Champion’

Lauren had loads of song suggestions, but she really enjoyed blasting RuPaul at her treatment in hospital so I think that this track deserves a place on our list!

Keb Mo – ‘I’m Amazing’

Daniela finds this track really relaxing and highly recommends it for meditation.

Destiny’s Child – ‘Survivor’

Rosie has lots of favourite cancer songs.

“They’re all super cheesy but I don’t care! A few days after I was diagnosed, I took part in the Cancer Research Pretty Muddy race with one of my close friends who had been diagnosed a year or so before me and her team. It was touch-and-go if I’d still take part [in the race] because I knew it was going to be really emotive, but I decided to get over myself and do it anyway. As I arrived, before meeting up with the others, ‘Survivor’ was playing. Yeah, it made me cry, but it’s what I needed to hear at that time.”

Ben Howard – ‘Keep your Head Up’

Marbellys listens to this song when she’s feels down. Music has really helped her in training for a half marathon too, and this is one of the tracks on her motivational playlist.

P!nk – ‘Just Like a Pill’

Angela told me: “This is the perfect treatment song, and it reminds me of my lovely Great Escape crew belting it out together in karaoke.” Karaoke is part of the evening fun at our twice-annual Great Escape retreats – but don’t worry, there’s no obligation to sing!

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At Shine we love a good singalong!

Bon Jovi – ‘Have a Nice Day’

Mike said that Bon Jovi’s ‘Have a Nice Day’ helps him when ‘the world gets in his way’!

Epica – ‘Delerium’

A great symphonic metal track, and Irene’s ‘it will all get better’ song.

Sia – ‘Unstoppable’

I think we can all recognise the helpfulness of this song – just like Shine member Liv, who nominated it for the playlist.

The Spice Girls – ‘Spice Up Your Life’

The Spice World – 2019 tour went on sale just as Joe was given his first chemotherapy date. The boppy, upbeat nature of the Spice Girls’ music really helped push him through the whole experience. This song took him back to easier times in life.

Florence + The Machine – ‘Dog Days Are Over’ and Bring Me The Horizon – ‘It Never Ends’

To finish the playlist, here are my two choices! I love the lyrics in the first song, especially ‘happiness hit her, like a bullet in the back.” I love lyrics, as shown in my next song choice. ‘It Never Ends’ is heavy and loud, and I listen to it on a bad day when I’m feeling down. The line ‘That I’m OK, that I’m fine, that’s it’s all just in my mind’ is one I can relate to a lot – especially with my day-to-day symptoms.

 

Fancy listening to all these songs? We’ve put together a Shine YouTube playlist just for you! Listen here. What songs would you add to our collection? Let us know in the comments.

Ten things I’ve learned in ten years of cancer

In our latest blog, one of our founding Directors, Ceinwen, writes about what she’s learned in the ten years since she was diagnosed with cancer.IMG_3361


On 4 February it will be exactly ten years since I was diagnosed with Stage 4 non-Hodgkin lymphoma. It’s also World Cancer Day, though I probably can’t claim that’s all my doing.

Cancerversaries can be a weird time. For me, I’m usually mentally taken back to being told that I had an aggressive blood cancer that had spread throughout my body. I had a six-week-old premature baby – and was then told I had a 40% chance of living two years. One of the most awful things I’ve ever faced was looking at my tiny child and wondering if I’d get to see her grow up.

In any case, I’m still here! It turns out that my haematologist was right – spending six months in the hospital on a high dose chemotherapy regimen offered the best chance for my survival and got me into long-term remission. It was, as one doctor told me, a question of short-term pain for long-term gain, and I’m incredibly lucky the gamble worked. The thing that no one warned me about was that there would be some longer-term pains too; pains that aren’t easily ignored or put to rest because you have to learn to live with it in some way. So with that in mind, here are ten things I’ve learned over the last ten years…

1. It really is the simple things that matter

Spending six months in the hospital, largely in isolation, gives you a lot of time to think. When I wasn’t feeling awful, I did manage to squeeze in some guided meditation between Homes Under the Hammer and the relentless taking of my ‘obs’. 

The guided meditation that I followed had this section at the end where you were supposed to focus on something you wanted to realise in the future. The only thing I ever focused on was walking hand-in-hand with my daughter on her way back from school. My daughter is 10 now (and almost at an age where she doesn’t want to hold my hand!) but every time I pick her up from school, a little part of me smiles because there is so much joy in feeling her little fingers in mine.

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Hanging out with this little person (and her dad) makes me happy.

We often think it’s the biggest things that matter the most, and that we have to ‘make memories’, but one thing I’ve learned is that the very best memories can also be the simplest.

2. You can’t come out the same way you went in

In his book the Emperor of all Maladies, Dr. Siddhartha Mukherjee recounts the story of Carla, a patient with acute lymphoblastic leukaemia who, like me, spent months in the hospital while receiving treatment. 

“What went into that room and what came out were two different people”, Carla says – a thought that resonated profoundly with me when I first read it.

Through Shine, I’ve spent years working with other younger adults with cancer and I can think of very few who were the same people afterwards as they were before. This isn’t always a bad thing and in no way means that they’re ‘defined’ by their illness, but it’s hard to have a life-threatening disease and stay the same. I think it would probably be weird if you did. 

There’s a lot of grief that goes with a cancer diagnosis and treatment, not least because you lose the sense of invincibility that you didn’t even know you had. For a lot of people I know, this can be a useful realisation: once you realise that time is limited, life can simplify. Why waste time on people you don’t like or a job you hate when you’re staring death hard in the eye? 

3. Find your peace of mind

I don’t really like yoga or pilates (and believe me, I have tried). Once you’ve got cancer though, everyone seems to think you need to do them to relax. One thing I’ve learned is that finding a way to quiet your mind is important – whether that’s through yoga or something else. For me, that something else is running. 

Part of my treatment involved having chemotherapy injected directly into my spine – a specific type of horror that I wouldn’t wish on my worst enemy. I survived each injection by mentally picturing myself running up Parliament Hill on Hampstead Heath. If I could just get to the top, the chemo would be done and the needle would be out of my spine. 

47ecf11f-6c4a-46a0-8bd2-518bfd0c9f38Once I was out of the hospital, I found running was one of the only ways I could calm my mind and rid myself of the constant worries about dying. Writing in Wired magazine last year after the death of US runner Gabriel Grunewald, editor Nicholas Thompson noted that running had helped him too: I still run and train in no small part because it’s a reminder that I’m alive. At times, I’ll snap back to the months after my treatments, and times when I felt like I could barely walk, and remember how beautiful it is to be able to run.” 

I couldn’t have said it better myself and to mark my ten years I’ll be running 10km in May with (at least) ten friends – and hoping to raise £10,000. If you’d like to donate to help me reach my goal, please click here! And if you’d like to join us on the run, let me know! 

4. There is no magic cure

I really wish there was a magic cure for cancer or that Big Pharma was hiding ‘The Truth’ but as far as I can tell, neither is true. Through Shine I’ve met some of the world’s leading cancer researchers who themselves are disappointed that there isn’t a magic bullet out there (or a conspiracy that they can be part of!). As our knowledge of cancer evolves, we’re increasingly learning that cancer isn’t one disease but many, meaning the chance that one thing is going to cure all cancers becomes less likely. That kale and wheatgrass shake your mother’s next-door neighbour has made you? Also unlikely to cure you.

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Sadly, this will not cure your cancer.

And if anyone tells you to forgo chemotherapy while following their specific diet or plan, ask yourself ‘who is making money from this?’. Yes, Big Pharma makes money from their drugs but that guy selling you a raw juice diet is making money too – and only one of them has been proven to work.

5. You don’t always need to be positive

If you’ve been diagnosed with cancer, chances are that more than one person has told you that you just ‘need to be positive’. But do you, really? 

Being diagnosed with cancer isn’t a positive experience. It sucks and, even ten years later, I’d give it all back in a heartbeat if I could. Very early on in my treatment, my haematologist told me that while being positive might have an impact on my quality of life, it wouldn’t have any impact on the success of the treatment. At the time, I’m not sure I believed him. Months later, as the sadness of my situation fully hit me, those were words I often clung to. Feeling sad wasn’t going to make me any physically worse and there was a relief in knowing that. That’s not to say I was never positive, but I didn’t force myself to feel good about something that was pretty crap just because someone else thought I should. What I focused on instead was having a good time when I could, hanging out with my husband, laughing with friends, and reading celebrity magazines to relax.

6. Cancer patients get the flu too

My cancer treatment gave me a chronic immune deficiency which requires an infusion at the hospital every four weeks, and every time something physically goes wrong, I tend to blame cancer. It turns out, though, that I’m still able to experience what I think of as ‘Muggle Problems’. 

CrunchieA few months ago, I chipped a tooth eating some Halloween candy and became convinced that my teeth were crumbling due to my cancer/cancer treatment/immune deficiency. It was actually, as my dentist said, ‘wear and tear’ which was not helped by eating copious amounts of Cadbury’s Crunchie bars. I mentally take any physical illnesses a lot harder now because I’m so aware of how drastically and quickly things can go wrong. I also try a lot harder to push myself when I’m not well, just to prove that I’m not really ill. Unfortunately it turns out that even regular people need sick days – and there isn’t much benefit in trying to push through them.

7. Animals are amazing

If you’ve been to a Shine conference or Great Escape lately, you’ll know that we’re big fans of therapy animals – from dogs to alpacas. I always liked animals but post-diagnosis I’ve become a much bigger fan. Why? Probably because animals can offer unconditional attention while asking for little in return… selfish, I know, but also very joyful. If you can’t have a dog, I’d highly recommend giving Borrow My Doggy a look (I met a great canine friend this way!). 

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My cat

I have also just got a cat and I’m loving having another creature in my house. Given his feline manner, his is a more conditional ‘feed-me-and-I’ll-love-you’ type of attention, but it’s still very therapeutic**!

8. Cancer isn’t an immediate death sentence

Before I entered Cancerland, I thought a cancer diagnosis was pretty much a live-or-die situation. Perhaps the biggest and best change I’ve seen in the last ten years is that more and more people are living longer with cancer. I know many people with Stage 4 bowel cancer who have defied the odds and now have ‘no evidence of disease’, while many other friends have been treated with immunotherapies and are living far longer than they would have ten years ago. That’s not to say that living with cancer is easy: it’s not, and it presents us with new emotional and  physical challenges. That said, if you know someone who is diagnosed with cancer then remember that treatments are changing all the time, and that there is an ever-widening gap between a diagnosis and the end of the line. 

9. Pace yourself

I’m going to be honest here and say that while this is something I’ve learned, it’s not necessarily something I practice

Fatigue is a huge post-diagnosis issue and, thankfully, one that is getting more recognition by doctors and researchers. Yet that doesn’t make it easier to deal with. If I overdo it, I’ll wake up feeling like I’ve been hit by a truck, and cancer-related fatigue doesn’t go away after a good nap. While I have always used a more of a ‘crash-and-burn’ type of approach, I have learned that pacing can be valuable, if annoying (why do I need to pace myself when no one else has to?). I’ve learned that exercise can help to manage fatigue – and also to acknowledge that if I have overdone it, there’s nothing wrong with taking some time out. 

10. Find your people

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Me and the Shine team at our October 2019 Great Escape

Some of the first people I met back when we started Shine also had babies and cancer. Others I met had had their careers dramatically interrupted. They were exhausted, and they were suffering from anxiety. That may not sound like a fun bunch, but I probably laughed longer and harder with my Shine friends than with anyone else, partly because we had the kind of shared experiences that bond you together in a powerful way. Many of those people remain my close friends and there is something amazingly comforting about being surrounded by people who just ‘get it’. I have a great husband and wonderful friends and family, but having friends who truly understand what living with cancer and its aftermath is like has given me the strength to keep going in my darkest times. If you haven’t found your people yet, give Shine (or another group) a try. You’ve got nothing to lose and very possibly an awful lot to gain!

**As I was writing this, my cat left a dead mouse on the doormat, which my daughter then stepped on with her socked foot. Perhaps not the therapeutic experience I was looking for. 

Meet one of our fundraising superheroes

In our latest blog, Shine volunteer Conor meets Charlotte – a Shine member who ran the Royal Parks half-marathon to raise money for Shine in 2019. 

In January 2017, Charlotte Rowe, who was an NHS graduate trainee at the time, was hit with some shocking news. Symptom-free, fit and healthy, except for feeling “a bit lumpy”, she was informed that she had Stage 2 Hodgkin’s Lymphoma. She had to leave her course immediately to undergo four months of ABVD chemotherapy and move back home with her parents in Wales. Fast forward to the present day: we met up in London so I could ask her about what it was like to run the Royal Parks Half-Marathon for Shine Cancer Support, raising more than £1,500 in the process.

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Royal Parks Half Marathon runner Charlotte

I met Charlotte at Picturehouse Central on Shaftesbury Avenue, a movie theatre at heart, but with a comfy upstairs bar area where young and older types come to work on their startups and chat purposefully. Charlotte’s been a friend of mine for the past year and she agreed to meet and talk about what it was like being an unenthusiastic runner yet wanting to challenge herself in a new way for a charity that grew to mean a great deal to her.

“I used to play a bit of netball when I was at uni and I had started running a bit more before I was diagnosed. I was never particularly fit but I was always trying stuff,” she said. All exercise  went out the window once treatment started, though. She was reacting well to the medication and drugs, but had a reasonable fear that doing any form of strenuous outdoor activity would lead to an infection or mess up the good thing she had going. In the process, she gained a stone and became a “couch potato”.

“I was constantly scared I was going to lose my appetite so I just ate every meal like it was my last meal, scared my taste buds would go. And I was eating everything I liked the taste of, worried I’ll never taste again (a common side effect of chemotherapy). Basically, I just lived a very nice life, actually,” she said wryly.

Fortunately, Charlotte was told that she was responding fully halfway through her course of chemotherapy. She then moved back down to London and started to work again. Originally hearing of the Royal Parks half-marathon through Shine, she sent a message to a number of her friends asking if they would do it, not actually considering doing it herself – until one responded by saying that she’d run it, but only if Charlotte did, too. (It was March, 2018).

“I couldn’t really think of a decent enough reason not to do it. My aim was to finish in under three hours, knowing I wasn’t going to be able to run the whole thing. I really enjoyed having a bit of routine and training.”

Charlotte managed to get under the time she wanted, thanks to a new-found ability to power-walk.

“I felt there were other people who were around my standard on the day of the event. I didn’t feel at the back. I ran a third of it probably, but actually learned that I’m really good at walking quickly.

“The half-marathon confirmed to me that my fitness was getting much better post-treatment and I then ended up starting playing netball again last January, playing every single Tuesday until the beginning of August.”

More of a team sport kind of person, Charlotte admits that she was probably a little deluded about some of the preparation that goes into a half-marathon. “I quite liked being able to talk about it, feeling like I was proving something to myself and letting my friends know that I’m normal again.”

Once Charlotte decided to submit her application for the race, at no point did she think she was never going to do the race. For her, raising the money for Shine was very important. “I did not meet a single person during treatment who was my age. I was the youngest on my chemo bay unit by at least 25 years. I was living on my own, having been through quite a traumatic experience and as soon as I went to my first Shine event, it unlocked a bit of my brain, as if this was more normal, this was fine.”

Nearing the end of her Earl Grey tea, Charlotte went on to describe how Shine continues to help her to move forward, saying that she was very proud to run for the charity. “I could never see myself doing it had I not been ill. You’d think if you hadn’t been ill then you’d do more stuff, but it wasn’t until I felt I had reason to do it.”

What is Charlotte’s advice to anyone considering doing a half or full marathon?

“Given the two extremes, when you think of long-distance running, you’re either Mo Farah or the man in the astronaut suit at the back, running as a joke,” she said. “They deliberately set their races up for dealing with everyone in the middle. I was worried about being left at the back, but they’re very accessible for people.”

If you would like to donate to any of the people running the Royal Parks Half-Marathon for Shine this year taking place on Sunday, October 13, you can do so using any of the following links and see their story:

Shane Simpson –https://uk.virginmoneygiving.com/shanesimpson2

Kat Simpson: https://www.justgiving.com/fundraising/kate-simpson24

Simon Walters: https://uk.virginmoneygiving.com/SimonWalters6

Pete Grosse: https://uk.virginmoneygiving.com/PeteGrosse

Diego Delgado: https://www.justgiving.com/fundraising/diego-delgado

If you’d like to find out more about how you can support Shine’s work, please drop us a line at fundraising@shinecancersupport.org, or view challenges here.

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!

 

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! 

Getting the most out of your medical appointments: tips from a Consultant Oncologist

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Consultant Clinical Oncologist, Richard Simcock

We’ve all been there: you spend weeks stressing over an upcoming appointment with your medical team – but you walk out feeling like you forgot to ask three of the four Very Important Questions you had and you’re not sure you made the most of the precious minutes you were allocated. While at Shine we’re used to seeing things from the patient’s point of view, we thought it might be useful to hear from someone on the other side of the table – what do doctors think about making sure those stressful appointments go well?

We were very happy that Richard Simcock, who is a Consultant Clinical Oncologist at the Sussex Cancer Centre, took on our blog challenge.  In the first of two blogs, he shares some of  advice about getting the most out of your face-to-face meetings with your oncologist. Please do share – or let us know if you think he’s missed anything!

 


As a Consultant Oncologist, a large part of my week is spent in clinics where I talk and listen. I have a schedule that averages around 40 appointments a week. Visits are listed between 20-40 minutes but can range from 5-90 minutes and more.  There’s a lot to get through in this short amount of time. In this environment, it’s easy to forget that a patient may have been waiting days, weeks, or even months for this conversation. The conversation itself is not evenly balanced: on one side is a healthcare professional under time pressure but with (hopefully) the answers and on the other, a patient with much on their mind and the greatest possible personal interest in the outcome. If this weren’t difficult enough, there’s the extra complication of a whole new language. Here is a place where ‘stage’ has nothing to do with actors, ‘progression’ is a bad thing, ‘negative’ nodes are a positive and the drug names seem deliberately difficult.

It’s not surprising then that many patients find clinic meetings unhelpful and sometimes a source of frustration and even anxiety.

Lots of things can conspire to make it more difficult (such as time pressure, or bad news), but there are ways in which you can be surer that a consultation will be effective and useful for you.

In the next two blog posts, I’ll take you through a list of things which I think are helpful. First up: four ways to prepare for the consultation.

1. List your questions

Memory is a fickle thing – that essential question that popped into your head uninvited at 3am is likely to be difficult to recall by 9am, and absolutely missing without trace by the time your appointment comes around. The question that was on the tip of your tongue may be kicked to a distant corner of your brain if the doctor starts asking about your bowels. Don’t take the risk of forgetting an important question: write a list.

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Make a list!

A doctor will not be irritated by a list. A careful set of questions can be really helpful in a consultation and helps manage time and concerns effectively. A list avoids the inconvenience of ‘oh, I just remembered one last thing’ (some people can manage to have multiple and separate ‘one last things’). More inconvenient still is to have to contact the patient again days later because ‘they forgot to ask….’ This is really time-consuming for everybody.

I mention lists of questions first – because so should you.

Introduce your questions early to help plan the time: ‘I know that you need to go through some things with me today, but I also have some questions I’ve written down. Is it OK if I tell you what these are at the beginning?’

Many doctors will prefer to know what the questions are at the outset as they may be able to answer them in the course of their usual conversation.

Try to order your list: are these questions about a clarification, current treatment, or what happens next? Grouping helps to deal with them efficiently. Also try to think what priority these questions have – particularly if you have lots. In a time-sensitive situation and with a list of 30 questions, it may be reasonable for a doctor to ask ‘which of these are the most important for us to deal with today?’

2. Bring someone

asking-beautiful-brainstorming-601170It isn’t always possible to have someone with you in clinic, but it can be really helpful. It’s too easy to end up in a consultation somewhere very different from where you expected to be (after bad news, for example). A friend or relative is likely to be calmer and can remind you of important details. They can also act as your secretary, as you will see.

3. Record

You wrote down the questions, so shouldn’t you record the answers? The answer is definitely ‘yes’ (and you shouldn’t need to write that down). You can’t remember everything that is said no matter how hard you try. The average brain can probably only keep around four things at once in it, for around 30 seconds, and 40–80% of medical information is forgotten immediately after a consultation.

You don’t need to come to your appointment with a stack of notebooks and leave with writer’s cramp – it can be unhelpful for patients to write their own notes. If you’re trying to capture every word, scribbling furiously like the last five minutes of your school English exam, you will miss details. Bring someone who can take notes while you focus on what’s being said.

Less stressful than writing is recording. An audio recording of the consultation is the perfect way to ensure that everything is captured, and nothing is forgotten.  In my department we have been recording consultations for patients since the 90s, using tapes and CDs. We have found it to be enormously helpful.

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You’ve probably got a voice recorder with you already

These days, almost everyone carries a portable recorder around in their phone. Both Android and iPhones/iPads have voice recorders as standard and they are easy to use. Make sure you know how it works before the clinic and test the settings – it’s a clinic, not a sound-check! Once recorded, these sound files can then be emailed anywhere, e.g. to a relative overseas.

There are also useful apps that allow you to add questions before the clinic and then record the answers for future reference. The OWise App is aimed at UK-based breast cancer patients, and the Cancer Net App is produced by the American Society of Clinical Oncology for all patients (although with a US bias in the information sections). These recordings are secure to your phone, which is a good way to protect privacy, but means they that cannot be shared as widely as simple sound files.

Finally, remember to ask your doctor before you record the meeting. Secretly recording a consultation is legally permissible but should be avoided – it suggests a significant breach of trust and a sense that doctor and patient are not on the same ‘team’.

Richard Simcock is a Consultant Clinical Oncologist at the Sussex Cancer Centre, with particular expertise in breast and head and neck cancer. He also works as a Consultant Medical Advisor for Macmillan Cancer Support.

He is a member of the National Cancer Research Network subgroup in psychosocial oncology and he is interested in research which improves the experience of people living with cancer. He was part of the James Lind Alliance Priority Setting Partnership that established the Top 10 priorities in research for people living with and beyond cancer.

He has been involved in communication skills training for healthcare professionals for many years, but still learns something new every week.

In his next blog post, Richard shares some more tips and tricks for the meeting itself, as well as some ideas for seeking further opinions and learning more about clinical trials. 

Richard tweets as @BreastDocUK.