Lost and found: Friendship after cancer

Life isn’t easy if you’re a young adult with cancer.  So many things – work, family, energy levels and that sense of invincibility – change all at once. One thing that most of us would like to think is that our friends (especially the close ones) will stand by and step up when they’re needed.

But what if you’ve got cancer and a friend ghosts you? In our latest blog, one of our Shine members, Catherine, shares a letter she wrote to a someone who was a close friend before cancer, but who disappeared once her diagnosis was confirmed. Take a read, share, and do let us know what you think.


Dear person who was my friend before cancer,

We were so close. Together we drank tea and wine, exercised, and chewed the cud over life, the universe and everything. We knew each other’s secrets. We cried together. So naturally you were one of the first people I told about my diagnosis seven months ago.

Since then, you’ve pretty much disappeared. Daily messaging has morphed silently into monthly texts, and the message is always prefaced with “I’m sorry I haven’t been in touch, I’ve been so busy….”. You might ask how I am, you might not. Occasionally you’ve suggested you might have time next month – but you never follow up and actually book something in. On the few occasions I’ve asked directly for help, you’ve been too busy.

friendships after cancer

Catherine with her two children

You once said to me “I know I haven’t been around much, but this is a long road, and when your help has tailed off, I’ll be there”. For months I believed this. I imagined you were waiting until you had time to do something ‘big’, something equal to the size of the heap of shite I am going through at the moment. I know you’re a perfectionist and I thought maybe you were just holding on until you found the time to deliver the perfect care package. But here I am, almost at the end of chemo, and I’m still waiting.

Other people have stepped up incredibly. People I hardly know have brought us food, taken the kids out, sent messages, diarised my chemo dates so they always remember to send a note. These are people with jobs and/or one, two or three kids, they are chief executives, teachers, full-time mums, opera singers…. busy people…. but somehow they have found time. My overwhelming feeling is one of gratitude and humility. But still, there’s you.

Actually, I don’t need you to have done any specific thing. I’ve had so much support it’s been amazing ,and most gaps have been filled. During the low moments of chemo, when I’ve thought about telling you how I feel, I imagine you asking what you should have done, and the things that pop into my mind sound so petty – why didn’t you just pop round for a cup of tea? Ask me if I needed anything when you went shopping? Waited for me on the school run so we could walk together? But it isn’t the absence of any of these things in particular. It’s the absence of all of them. It’s that I thought that you cared, that you would be there, that you had my back, and it makes me so sad that you don’t.

I’ve tried so hard to understand why; many people have suggested that perhaps my diagnosis is just too scary for you to deal with. But I know you and you don’t shy away from tough situations; if anything you seek them out. Now I’ve given up trying to work it out. It doesn’t matter. I won’t be able to trust you again, and I don’t blame cancer for that. This dumb disease may have created the situation but you chose how to respond to it. You chose to let your addiction to being busy dictate your priorities and to leave me at the bottom of the list when I needed you most. These days I struggle to even read your Facebook updates – it’s an important part of your life and you use it a lot – because it feels like out of the half hour you choose to spend on there each day, you could have taken 30 seconds out to drop me a text.

Other people, those who have rallied round, will be new friends and I rejoice in their love and support. But I’m still sad and angry that you chose to leave me. I hope if I’ve learned one thing from having cancer, it will be how not to make the same mistake.

Catherine

Catherine says she “rants a lot on Facebook to my poor captive audience but this is my first blog!” (we thank her for sharing it!).  Catherine is a secondary school teacher who was diagnosed with stage 3 bowel cancer. She has two children. 

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

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getting hit by a bus

10 things you shouldn’t say to someone with cancer

Okay, we get it. Sometimes, talking to your friend or relative with cancer feels awkward. What do you say? What if you say the wrong thing? How can you help?

Recently, a discussion in our private Facebook group took off – “What’s the silliest thing someone has ever said to you about cancer?” asked David, one of our members. More than 110 comments later, we felt like we had to share some of them with the world! Take a read and let us know what you think. If you’ve got cancer, we hope you’ve managed to avoid these comments (all of these are real, by the way – we haven’t made them up!).  If you’re supporting someone with cancer, we know you want to help. Stuck for words? Sometimes admitting, “I don’t know what to say” can be the best way forward.

1. “You don’t look like you have cancer”.

In the movies or on TV, the person with chemo usually spends their days losing their hair and looking increasingly ill. But these days, a lot of cancer drugs don’t make you lose

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All of these people have, or have had cancer.

your hair, and many people don’t have chemotherapy anyway. Some people end up on “watch and wait” without treatment right away, while surgery and radiotherapy are frequently given for more localised cancers (or even advanced cancer if they can halt the spread). The key message here? A lot of people don’t “look” like they have cancer but just because you can’t see the side effects of the cancer or treatment doesn’t mean they aren’t there. A simple “How are you feeling?” can be a much better, and more sensitive way to start a conversation.

2. “So, how long have you got?” or “I’ll help you with your bucket list.”

We all know that cancer can cause death. But if, when, and how that might happen isn’t usually something that we want to talk about. When you’re asking your friend or relative about their illness, ask yourself whether your questions are more for your own information (read: nosiness) or to help them.Bucket List

Most people with cancer aren’t given a “timeline”, and even if they are, they might not want to share it. If your friend is openly creating a bucket list, great, but generally speaking it’s good to keep the death talk to a minimum. Journalist Helen Fawkes created a “List for Living” after she was diagnosed; this can be a much more positive way to think about treating someone with cancer to a nice experience than a “bucket list”.

3. “You don’t need chemo…..I know someone who cured their cancer with [insert questionable cure here]” or “Chemo doesn’t work – it’s just a plot by Big Pharma to make money” or “Have you tried turmeric?”

Wheat grass

This will not cure your cancer.

So, your friend is prepping to start chemo and this seems like a good time to tell them about an article you read about someone who shunned chemo and cured their Very Deadly Cancer with kale and wheatgrass, right? Wrong.

Chemo can be tough but it saves lives, and whether you agree with your friend’s treatment decisions doesn’t matter. Eating more fruits and vegetables, and getting more exercise is certainly good for us and there is some evidence that it can help reduce rates of relapse in certain cancer types. But if the person you’re supporting is undergoing chemotherapy, consider carefully whether it’s definitely the right time to bring up that raw food diet that your aunt’s sister’s best friend used to cure her dog’s leukaemia. It’s probably not.  Instead, why not make them a nice meal and take it over to their house? (Only include kale if you know they like it!).

4. “That’s a good kind of cancer” or “At least you’ve lost weight. There’s a silver lining in everything, right?”

When you’re diagnosed with a life-threatening disease it’s pretty hard to find any silver linings. Self-esteem can take a massive hit, so try to avoid making comments about someone’s appearance or weight or downplaying the seriousness of what they’re facing. Anyone diagnosed with cancer is likely to feel pretty shocked by the diagnosis. Sure, some cancer types are more curable than others, but as most oncologists will tell you, every case is different. Telling someone they’ve got a “good cancer” risks minimising their feelings. A better approach might be to say something like “I’m so sorry about your diagnosis. Do you want to talk?”

5. “Cancer is caused by past trauma and stress”

There is little good quality evidence that stress and cancer are linked and if your friend has cancer, they’re probably stressed because, you know, they’ve got cancer. Ask yourself what you can do to relieve their stress. Can you take them out for a film or a drink? Cook them dinner? Walk their dog? It doesn’t need to be a big thing – even small gestures can mean a lot. Take a look at our blog about how you can help.

6. “I’ve heard that’s a really bad way to die” or “I know someone who died of that.”

As with point 2 above, avoiding death talk is generally the way to go. Talking about how bad/painful/awful death might be is a big no no. And telling your friend or relative with cancer that you know someone who died of the exact same thing is also to be avoided. Know someone who has lived 20 years after a diagnosis? Feel free to mention them! Those are the stories we like.

7. “Managing someone with cancer will look good on my CV” or “What about me?”

If someone you know has cancer, it’s time to think about all the great ways that you can support them. A cancer diagnosis is about the person who has cancer and those immediately surrounding them (partners, parents, children). This can feel odd if you’re used to getting support from your friend or relative but think of it as a good opportunity to repay all the love and support that you’ve received in the past. Unsure who to turn to for support? Take a look at this handy “ring theory” guide and remember: support in, dump out!

Ring Theory

8. “If you need anything, just let me know.”

We know it might sound odd, but often, we don’t know what we need, and even if we do, it can feel scary to ask. Rather than making your offer general, try to make it a bit more specific. Ask if you can make dinner on a Tuesday, drive your friend to their next appointment, or do their grocery shopping next week. By making it specific, you’re taking away the burden of coming up with something – and that is helpful.

9.“Everyone dies” or “Any one of us could get hit by a bus tomorrow”.

Bus

“I might get hit by a bus tomorrow”.

You’re right – everyone does die. But the difference with cancer, especially cancer at a young age, is that death goes from being a vague hypothetical, to something that is giving you a cold hard slap in the face. That bus everyone’s talking about? Your friend has already been hit by it. They’re just waiting to see whether they’ll survive, and they’re likely really scared. It’s great to ask someone if they want to talk but sometimes distraction can be the greatest gift. Seen a funny cat video online? Now may be the time to send it over (assuming you’ve already checked on how they’re feeling).

10. “So, you’re all better now, right?”

One of the things that few people talk about is the long-term effects of cancer. The media shows us people who have survived cancer and go on to run a marathon or write a best seller. What you don’t get to see is that those same people are often also left scarred, depressed and tired after months or years of intensive treatment. For many people with cancer, the end of treatment is a tough time. They’re no longer seeing their doctors and nurses as regularly and, on the surface, life appears to be returning to normal. They may be in remission or be looking forward to a long treatment break but they’re unlikely to be “all better now” or for a long time to come.

We know it can be tough to keep up the same level of support once treatment has finished but keep in mind that your friend or relative may be feeling especially lonely. Make sure to keep checking in and, if you can, make sure they still get the odd treat. Be ready to chat if they want to talk about how they’re feeling and remember that you don’t have to solve all their problems. Just being a good listener can be all that’s needed.


If you’re in your 20s, 30s or 40s, why not join us online? We’ve got a private Facebook group here, or you can follow us on Twitter or Instagram

young adult cancer conference

Getting connected

In 2016, Shine decided to go large and hold our first annual conference. With close to 100 people in attendance, it was a great day and for 2017 we decided to go bigger and better! Shine Connect was held on 20th May in London and was designed as a way for young adults from across the country to come together and connect for a day. With expert speakers and much more, it’s now one of our favourite events, and this year 120 people joined us. Take a read of Jen’s blog about the day – and get set to join us next year!


Connect 1I’m not sure there are many – in fact any – other cancer conferences that combine singing and cute dogs with dating advice and frank discussions about sex and relationships. And that’s what makes Shine Connect unique!

Shine supports a diverse group of young adults in their 20s, 30s and 40s with the unfortunate commonality of having had a diagnosis of cancer. Our needs differ vastly from the older cancer demographic and Shine Connect, Shine’s annual conference, works to address those needs. It is a conference both for young adults with cancer and for healthcare professionals looking to better support young adults with cancer.

Following an introduction from Shine Directors, Ceinwen and Emma, the day kicked off with a panel discussion – think Oprah, but without the tears. Three young adults living with a cancer diagnosis, Robin, Chris and Jess, spoke eloquently about a range of subjects and took questions from the audience. Topics included dealing with uncertainty and anxiety; managing your own feelings and needs alongside the needs of your partner, parents and wider family and friends; dating after cancer; and returning to your career or readjusting career plans. Far from being depressing, their discussion was a lively, funny, raw and honest. Pretty much every person I spoke to could identify with something that was discussed on the panel and many people felt it was one of the best sessions of the day. (NB: You can view the Facebook Live video of the panel here). 

Having cancer as a young adult is a lonely business, and more than once someone at the conference mentioned the frequency with which we hear ‘oh, you’re very young for cancer!’ at clinic appointments. Having the opportunity to listen to and talk with others who are also ‘too young for cancer’ is like being hugged many understanding, warm arms. For me, this first session really set the tone for the rest of the day.

Connect 4

Shine participants, Plus Ones and healthcare professionals came together

After the panel discussion, the conference attendees split into different sessions: building resilience, fertility after cancer, managing fatigue, and supporting children through an adult’s cancer. There was also a separate session for attendees who were the family/friends of a young adult with cancer, and a session about the needs of young adults with cancer for health care professionals. Over lunch (a super scrummy, healthy spread, followed by fruit or something a little more chocolaty if you preferred!) there was plenty of time to mingle and chat with others, and to swap tips gained from the various sessions. There was also a chance to talk to some of the other organisations that had stalls in the conference “market place”. These included Ellie’s Friends, a charity providing treats like days out and theatre tickets to young adults with cancer; the Lymphoma Association; Insurance With, a specialist travel insurance company for those with pre-existing medical conditions; and Maggie’s Centres. Look Good, Feel Better were there giving makeovers, while a couple of fabulous massage therapists set up downstairs and managed to give out 50 (!) free massages over the course of the day. Last, but definitely not least, Shine had invited Pets as Therapy to the conference, giving everyone who attended the chance to meet some very cute therapy dogs!

 

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One of the therapy dogs gets some love from a Connect participant!

The afternoon session saw some of the morning sessions repeated but there were also new sessions on sex, singing, and creativity in health. More than one person told me how difficult it had been to choose! Along with the majority of afternoon attendees, I went to the interactive sex session (that’s interactive as in talking about sex, in case you were wondering!) Led by the amazingly frank and funny Karen Hobbs and Dr Isabel White, a leading specialist in sexual problems related to cancer treatment, a range of issues were discussed, from physical limitations due to treatment, to chemically induced menopause. It was refreshing to focus on an area that is generally neglected by the medical profession.

Sex after cancer

Dr. Isabel White and Karen Hobbs hosted a great (and funny!) sex after cancer session

The day was rounded off with a fascinating keynote speech from Professor Mark Petticrew, a global expert in public health at the London School of Hygiene and Tropical Medicine, who has carried out extensive research into psychological factors and whether they influence cancer and heart disease. During my own experience of cancer and recovery, the questions of how a ‘stressful’ life might have contributed to my diagnosis, and whether emotional stress might hinder recovery, were often brought up. Professor Petticrew’s research showed, however, that there is very little convincing evidence that stress causes cancer and that many of the studies on stress and cancer are seriously flawed. It was an interesting note to end on given that so many of us worry that we have done something to cause our cancer. There’s no need to get stressed out about this too!

Mark P

Prof Mark Petticrew from the London School of Hygiene and Tropical Medicine

If you go to Shine’s website you’re able to listen to some fabulous podcasts of ‘Not Your Grandma’s Cancer Show’. Shine Connect could have been called ‘Not Your Grandma’s Cancer Conference’. It’s certainly unique in the cancer world. If you weren’t able to attend this year I strongly recommend you keep an eye out for Shine Connect 2018; who knows what fun will be added next year!

 

It definitely takes a village to make these events happen and we’d like to send massive thanks to TTA, the amazing events management company who helped us pull Shine Connect off for the second year in a row! Huge thanks also to Don’t Forget the Kids, Emily Hodge of Coaching Emily, Toby Peach and Tenovus Cancer Care for delivering some fabulous sessions at the conference! We’d also like to send a huge shout out to Look Good, Feel Better for running some great make-over sessions, and Keith and Rozalia from the Complementary Therapy Department at the Royal Free Hospital for giving free massages to our participants all day!

Supporting the supporters of young adults with cancer – our first Shine Plus Ones workshop

Back in March, Shine held its first Shine Plus Ones workshop (we meant to publish this blog sooner – but we’ve been busy!). It was a great day and we were really happy to put some faces to the names we’ve come to know via email and social media over the last Plus Ones 5couple of years!  In our latest blog, Salma, one of the participants, explains how the day went down. We’re really keen to expand our Plus Ones group so if you’d like to get involved, drop us an email at plusones@shinecancersupport.org, or join our Shine Plus Ones Facebook group. The Plus Ones have also been meeting up for drinks in London and the more the merrier so please do get in touch!

From it’s 18th Century origins, the beautiful Somerset House by Waterloo Bridge has been a centre for debate and discussion.  How fitting then that a group of strangers should meet here to talk of something that is rarely given the platform it deserves.
Back in March, Shine held its first Shine Plus Ones workshop.  We are the other half of Shine – or in better terms the other halves.
Plus Ones 3
The wonderful Shine Cancer Support has helped and continues to support thousands of young people with cancer through it’s meetings, retreats, social events, blogs, Facebook pages, Twitter feeds – and much much more.  But behind each of these people is someone who keeps it all together, day in day out, the spouse, the partner, the sibling, the parents……We are the Plus Ones and we sometimes need help too.
Public transport did it’s best to delay and reroute us but we are not a bunch to give up lightly and eventually all 22 participants managed to make it to Central London for the workshop.
Tirelessly organised and led by Ceinwen, Emma and psychologist Jason, the day began gently.  We’d never met each other before and none of us, we discovered, are that good at talking about this stuff.

We all provide care and support for our loved ones but how do you stand next to someone with cancer and say “Hold on – what about me?”.   You just can’t do it – unless that is, you are in a room full of people who feel exactly the same way.  And this is the genius of the Shine Plus Ones group: we all get it.  There is no judgment here, you’re allowed to say that you are angry with the person you are caring for, you are allowed to say you feel depressed or that you feel you’re being treated unfairly.  These little things are actually huge.

Plus Ones 2

Some of the ways our Plus Ones deal with stress

The day was cleverly arranged to get us thinking and talking.  It was invaluable to be able to give and receive advice to and from each other.  Jason is the one though who bound the day together; his personal and professional experience really cleared the haze for most of us.  As a psychologist, he really helped us to separate what are thoughts and what are realities, and he gave us tools to deal with our stresses and anxieties and taught us to be kind to ourselves. He made it ok to have a bad day.
Plus ONes

The workshop gang went for drinks afterwards. They’re now meeting up regularly.

At the end of it, we had a network, an email list and a few phone numbers.  Some of us have met up already since that day – a noisy table in a crowded bar where we blended in with all the other noisy tables of people laughing and drinking.  We don’t need to talk about cancer, we don’t need to cry or shout or talk deeply about anything – but the point is that we can if we want to, and we all know it.  There is another meet up planned and there will be many more.  And hopefully our group of friends will grow over time – not because it’s a nice club to be a part of, but because out of all this chaos and heartache it’s a huge comfort to know you’re not alone.

To find out more about Shine Plus Ones, please email us on plusones@shinecancersupport.org, or request to join our private Facebook group. This workshop was made possible through the support of our fabulous friends at Travel Insurance Facilities

Bowel cancer at 32: Life, but not as you knew it

April is Bowel Cancer Awareness month, so in our latest blog post, we’re bringing you a blog by Cara, a Shine member who was diagnosed with bowel cancer shortly after she turned 32.  Currently undergoing treatment, Cara is passionate about raising awareness of bowel cancer and its symptoms, as well as sharing her experience of treatment. Please do share this blog with others and, as always, let us know what you think!


As April is bowel cancer awareness month I am asking this:

#Isitok that on average 2,500 young people in the UK are diagnosed with bowel cancer every year and that many of these individuals experience a delayed diagnosis? A delayed diagnosis that stems from a perception that in your 20s and 30s you’re too young to possibly have bowel cancer?

Cara 1

Guest blogger, Cara

I decided to write this blog post because that is exactly the situation I found myself in 14 months ago when I was diagnosed with stage 3 bowel cancer and I hope that by sharing my story I can raise awareness of the disease and make people stop and think. After all, nine out of 10 people survive bowel cancer if it is caught in the early stages and the key to this is early diagnosis. My advice is that if you have a concern and it’s not normal for you, don’t be embarrassed speak to your GP about it. We all know our own bodies and you know when something just isn’t quite right.

A little about me……

At 32 years old I found myself staring cancer in the face like an insurmountable challenge that I didn’t know if I was strong enough to tackle. It had taken 10 months to reach a diagnosis and when I speak to other people my age with bowel cancer I’m not alone in having been told we are just ‘too young to have cancer’.

My cancer story started when I decided to pay a visit to my GP because I was slightly concerned that there were some changes in my bowel habits and I was experiencing abdominal cramps. A routine blood test showed that I was anaemic and the GP made a referral. Looking back now the anaemia explained the tiredness I had been dismissing for months as something that just happens when you “turn 30” – something which now makes me chuckle as if reaching 30 puts you on some slippery slope to the realms of being an OAP!

Before I knew it, we were six months down the line with no answers as to why I was anaemic, and with the suggestion that the pain and anaemia were both down to period pain. During this time, I also had to deal with the death of my father. It was a difficult time, but as I dealt with my grief, my life began to get back to some sort of normal. I was going to the gym, going out with my friends and I even took part in a charity cycle from London to Paris with work.

However, as the weeks passed I found myself being unable to keep pace with my friends. Little did I know that my anaemia had slowly been getting worse and that lurking in my colon was a growing tumour. Just before Christmas, after a couple more visits and chats with the GP, I found out that my red blood count had fallen dangerously low and that my doctors were considering a blood transfusion. A test on a stool sample discovered blood that wasn’t visible to naked eye and I was quickly referred for a colonoscopy. That was when I knew I had cancer. I had seen this before when my father had been diagnosed. From that point my diagnosis happened very quickly but what I still couldn’t get my head around was why, with my family history of cancer, the faecal test wasn’t done at the beginning alongside everything else. It’s still something that I question today.

Since my diagnosis I have faced 14 months of endless hospital appointments, blood tests, seven hour days in the chemo unit, major surgery and blood clots, and while I would love to say I am at the stage of moving from cancer patient into the ‘life after cancer phase’, my post-chemotherapy scan showed lesions on my liver and the cycle has begun all over again. I am now undergoing a more aggressive chemotherapy which involves the joy of a ‘cold cap’ in a vain attempt to save my hair!

Another twist in my tale…..I have Lynch Syndrome…..

Lynch syndrome is the most common form of hereditary colon cancer and can increase the risk of developing colon cancer by up to 80%. Statistics make it as common as the BRCA mutation, but many people won’t have heard of it. Being in active treatment, I haven’t been able to fully address the impact that Lynch syndrome could have on my future, but I know that when the time comes it will have an impact on decisions about children and also that there will be decisions to make about having preventive procedures. While it would be very easy to think that knowledge of this mutation could have helped to detect my cancer earlier, I can’t change the past. I do believe though that knowledge is power and, that by ensuring I get right screening, I can minimise my risk of developing another cancer in the future.

What I have learned….

Dealing with a chronic disease forces you to develop a certain superhero strength…but that’s not to say that there aren’t difficult days or days where I feel so overwhelmed by it all that I don’t know how I going to make it through the next bit of treatment. Cancer will change me, but how is not yet fully clear. I’ve been told that I am so strong to be able to deal with everything that I am going through ………personally I don’t think I’m anything out of the ordinary. I think we all have superhero strength within all of us. It’s like the saying goes: ‘you don’t know how strong you can be until being strong is your only option’.

Cara works as a buyer in the womenswear department of a major UK retailer. She volunteers as a Cancer Research UK Campaigns Ambassador and claims to have an unhealthy addiction to travel literature and anything travel or adventure related! You can follower her on Twitter @Caraeliz24.

 

 

 

 

 

The lowdown on eating well after cancer

“Have you tried wheatgrass? How about kale smoothies?”

There is unlikely to be a cancer patient out there who hasn’t been on the receiving end of diet or nutrition advice – whether they asked for it or not. But what does “eating well” actually mean, and how can we do it? And does being healthy mean going raw or cutting out all the fun stuff (Gwyneth Paltrow, we’re looking at you!)?

Last month, we asked the members of our private Facebook group what questions they had about diet and nutrition and we were thrilled that registered dietician Victoria Francis took on the challenge of responding to them!  In her first blog for us, she’s answered 10 of questions and also given us a few healthy recipes (scroll to the bottom if you just want these).  Take a read and let us know what you think. Please do share the post – and share any yummy recipes you have with us as well!


1. You’re a registered dietitian. Can you tell us the difference between a dietitian and a nutritionist?

The key differences are the qualifications and regulations imposed on the two titles.

victoria-francis

Guest blogger and registered dietitian Victoria Francis

Dietitians are the only nutrition professionals regulated by law and governed by an ethical code. This means that dietitians will always work to the highest standard, using the most up-to-date public health and scientific research on food, health and disease when advising people. Currently, due to a lack of regulation, anyone can practice under the title of nutritionist/nutritional therapist/nutrition advisor/ nutritional coach (etc., etc.!). There are many qualified nutritionists, some of who are also registered dietitians.  By no means am I suggesting you shouldn’t seek advice from a nutritionist – but you should check that they are registered with a professional body such as the UK Voluntary Register for Nutritionists.

Dietitians primarily work in a clinical setting in the NHS or the private sector in a variety of settings. Seeking advice from a Registered Nutritionist or Registered Dietitian is the gold standard and you can be assured that all advice discussed will be based on scientific evidence – not pseudo-science! Below, I’ve outlined the qualifications and registration with governing bodies the different nutrition titles need:

Dietitian
Qualification: BSc Hons. in Dietetics, or a related science degree with a postgraduate diploma or higher degree in Dietetics.
Governing body: Health Care and Professions Council

Registered nutritionist
Qualification: Undergraduate or post-graduate nutrition degree
Governing body: Association for Nutrition

Nutritionist/Nutritional Therapist/Holistic Food Coach
Qualification: None
Governing body: None

2. I’m looking for nutrition advice. How do I know that someone is legitimate and knows what they’re talking about?

To guarantee that the advice you receive is credible and evidence-based check what professional body people are registered with and what up-to-date insurance they have. In order to practice as a dietitian, a person has to be registered with the Health Care and Professions Council. Dietitians can also be found on the Freelance Dietitians website (www.freelancedietitians.org). This website lists all the dietitians registered with the HPC.

When looking for a nutritionist ensure they are registered with the UK Voluntary Register for Nutritionists (regulated by the Association for Nutrition).

3. So, what do you think about “clean eating”? 

Clean eating is facing a huge backlash in the media by health professionals who have a big issue with what it stands for and what it can create. The fundamental problem with clean eating is that it is not evidence-based. Food and health bloggers who promote clean eating tend not have any nutritional qualifications but rather want to share their own experiences. This isn’t science!clean-eating

The essence of “clean eating” is flawed as it suggests there is a single perfect way of eating which is essentially setting people up to fail. There are numerous “rules” such as the removal of whole food groups including dairy and gluten, which can lead to very restricted diets with likely nutritional deficiencies. Unless you have Coeliac disease you will not benefit from removing gluten from your diet. Many “clean eating” advocates advise you to replace sugar with “healthier alternatives” such as coconut sugar or maple syrup. To set the record straight: these are all sugar! The body will handle them all in exactly the same way. They are not a superior alternative, just a very expensive one!

Following a “set of rules”, for some people, can impact on their mental health. If they don’t conform to the rules then they feel that they have failed. If you want to eat healthier, reach your 30g fibre a day, reduce your sugar intake, etc. then go back to the basics. Its not sexy or new but it is realistic and achievable. Try to use fresh ingredients where possible, watch your intake of fat and sugar, and look at your eating habits. Aim for small realistic changes.

4. What are your thoughts on processed and fermented foods – especially processed meats and products like Actimel?

What do you think of when you hear the words “processed food”? Most of us think of unhealthy, high fat, high sugar and salty foods. While this may be true for some processed foods, there are many that provide good nutrition also.

Processed foods are “any food that has been altered from its natural state for either safety reasons (e.g. milk is pasteurised to remove bacteria), convenience or to preserve the availability of nutrients”. So breakfast cereals, cheese, milk, yogurts, bread, and tinned and frozen vegetables can all be called processed foods but do we don’t typically consider them unhealthy.

If we focus on red meat, there has been some recent guidance on how much we should be eating. The Department of Health has advised that people who eat more than 90g (cooked weight) of red and processed meat a day to cut down to 70g per day (or 500g per week). This is equivalent to two or three rashers of bacon, or a little over two slices of roast lamb, beef or pork, with each about the size of half a slice of bread.

Some fermented foods, such as yogurts, are sources of probiotics. The research into the health benefits of friendly bacteria from fermented foods is ongoing but evidence does show a healthy gut flora plays an important role in immunity and may offer protection against infections.

5. If you’re fighting fatigue and looking for an energy boost, what foods would you recommend (aside from sugar and caffeine!)?

Before we look at specific foods we need to first take a look at eating patterns. A slump in energy can be a sign that your blood sugar level has dropped a little. Eating little and often (e.g. three small meals with a couple of healthy snacks in between) can ensure that your energy and blood sugar levels are topped up. Try to eat something every 3-4 hours.

The foods you choose have a big impact on your energy levels and many of us fall for the “quick sugar fix” but when you’re looking for an energy boost you need the right balance of carbohydrates and protein.

When choosing carbohydrates, choose foods with a low Glycaemic Index (GI) such as lentils, oats, nuts, seeds, wholegrain bread, and brown pasta. These foods are broken down slowly by the body and their energy is released over a longer period of time whereas foods with a high GI (think sugar, honey, fizzy drinks, white bread, potatoes) are broken down quickly and the sugar released quickly. Protein is also known to be broken down slowly so adding protein to a carbohydrate snack/meal will ensure a slower release of energy

Good snack ideas include cheese and apple, a handful of nuts and fruit, a slice of wholegrain bread or oatcakes with hummus/nut butters/boiled egg, and Greek yogurt with fruit and sprinkling of seeds such as pumpkin or sunflower.

Also, make sure you stay hydrated! Dehydration is thought to be the cause of one in 10 cases of unexplained tiredness. Alcohol also dehydrates you. Aim for 6-8 glasses of fluid per day.

 6. A lot of people claim that sprouting foods like alfalfa and broccoli are extremely high in nutrients. Is this true?

Sprouting is the process whereby seeds germinate and are eaten either raw or cooked. Bean sprouts tend to be the first that come to mind when we think of sprouting but many foods can be sprouted including barley, wheat, spelt, rye, oats, lentils, peas, and pinto and kidney beans, sesame and sunflower seeds, almonds and broccoli.

These foods are all nutrient rich but are not always superior to their non-sprouted counterpart. Rather than focusing on sprouting seeds, a good starting point is to aim for your five-a-day and to include more plant-based foods in your diet where possible. This can be done by adding nuts and seeds to your salads or adding beans to your soups and stews etc.

7. If you’re looking to boost your iron intake, what foods would you recommend?

Iron is an important mineral, needed to make red blood cells which carry oxygen around the body.  Simple ways to boost your iron levels include:

  • Consuming iron rich foods such as red meat, fish, poultry, beans such as kidney or haricot, eggs and fortified breakfast cereals daily.
  • Adding a handful of nuts or seeds such to your bowl of cereal, your pot of yogurt or salads.
  • Ensuring you have fruit and/or vegetables with every meal as vitamin C helps your body to absorb iron. You could have a small glass of juice with your breakfast, a bowl of fruit salad after your meals or just an extra helping of leafy green vegetable such as kale with your meals.
  • Try adding haricot or kidney beans to your stew or soup to bump up the iron. A great tasty alternative to mashed potato is parsnip and cannellini bean mash.
  • Eating breakfast cereals are fortified with iron (except for muesli and granola).
  • Adding a boiled an egg or two to your breakfast for an iron boost. Or take a boiled egg for a snack later in the day

Some foods can make it harder for your body to absorb the iron in your diet such as tea and coffee (due to tannins), milk and some wholegrains. Try to avoid drinking tea or coffee at least 1 hour either side of your meal.

8. If you’re avoiding sugar, are alternatives like honey a good idea?

In a word, no.

“Sugar” loosely refers to several sweet carbohydrates such as monosaccharides, disaccharides or oligosaccharides. The sugar that you put in your tea or on your cereal is made up of two simple monosaccharide units (glucose and fructose) joined together to form the disaccharide sucrose. Honey similarly contains both glucose and fructose and has similar caloric content to sugar. Honey and maple syrup are often promoted as “natural” or “unprocessed” and therefore healthier or superior. But sugar is a natural product, made from sugar beet and sugar cane. The body does not differentiate between maple syrup, coconut sugar etc. and so all of them still raise blood sugar levels similarly to sugar.

Instead of searching for a “healthier alternative”, a starting point could be reducing the cereal-fruitoverall amount of sugar your currently use. You can do this by gradually reducing the amount of sugar you have in your tea or, if you like honey on your porridge, try adding stewed fruit instead.

9. What are your thoughts on raw food diets?

The principle behind raw food diets is that all foods should be unprocessed, unrefined and not heated to above 44c. The theory is that if the enzymes within foods are preserved, this will aid digestion and offer health benefits to your body. Foods allowed on a raw diet therefore includes whole foods such fresh fruit and vegetables, nuts, seeds, sprouted grains and some pulses and grains. Raw diets are largely vegan, although some advocates do include raw unpasteurized milk, raw meat and raw fish.

So, does the evidence stack up? It is widely agreed that a diet rich in plant-based foods including fruit, vegetables, nuts, seeds, legumes and pulses, with less reliance on meat and fish, can offer protection against some diseases such as cancer and heart disease. BUT the evidence is scarce for choosing uncooked, raw foods only. In fact, we know that cooking increases the bioavailability of some nutrients such as lycopene (highest concentration in cooked tomatoes) and betacarotene (carrots).

Choosing a raw food diet could put you at risk of specific nutritional deficiencies including vitamin B12 (found mainly in animal products), calcium and iron, and protein intakes tend to be low on such a diet.

Coconut oil is often promoted on raw diets, but despite the recent health claims, coconut oil is still 90% saturated fat. Eating uncooked foods or unpasteurized milk/cheese should be avoided if you have a compromised immune function and, from a food safety point of view, eating uncooked foods can put you at risk of food poisoning.

Another fad diet? I think so! Take the sensible principles such as increasing your intake of plant-based foods but have an extra portion of pumpkin seeds sprinkled over your pan-fried salmon salad.

10 Do you have any tips on sneaking in your 5 a day?

Before we discuss how to reach your 5 a day lets remind ourselves what is classed as a portion.

The following class as a portion (80g):

  • 1 medium sized piece of fruit e.g. 1 apple/orange
  • 2 small fruits e.g. 2 plums
  • 80g beans and pulses such as chick peas, kidney beans
  • 80g fresh, frozen or tinned vegetables
  • 30g dried fruit

berries-and-porridgeThe obvious way is to reach your 5-a-day is to choose fruit or vegetables as a snack. As much as I know this, however, I personally like a biscuit with my cuppa…so I need to ensure my meals are packed with portions of fruit or vegetables. Here are a few tips:

  • Add chopped dates, apricots or stewed apples to a bowl of porridge. Add sliced strawberries to your bran flakes or banana to your Weetabix.
  • Make pancakes with added blueberries in the mixture.
  • Have chopped crudités with your sandwich at lunch such as cherry tomatoes (x8) or carrot sticks (1/2 medium carrot)
  • Serve all main meals (where appropriate) with a side salad
  • Add a tin of haricot beans or chickpeas to slow cooker meals
  • Mix mashed potato with a tin of cannellini beans for a Shepherd’s pie topping or mix mashed carrot and swede.
  • Try to have have three different vegetables with your main meal.
  • Bulk out your Bolognese mix with a good couple of handfuls of frozen vegetables (this means the meat goes further, you lower the fat, and you increase the fibre too!)
  • Make your own tomato sauce with fresh or tinned tomatoes, chopped carrots, courgettes, onions and herbs. Once blitzed no one will know!
  • Remember that soup is such a great vehicle for veggies.

If you are struggling for a healthy snack then below is a recipe for a fruit and nut bar that I like to make. The combination of whole grains, fruit, nuts and protein make for a healthy, nutritious and sustaining snack!

Nutritious nut, fruit and oat barbars

Ingredients
100g dates
50g semi-soft apricots (chopped)
50g walnuts (chopped)
1 tbsp sunflower seeds
150g oats
60g ground almonds
100g honey
100g low sugar/salt peanut butter

Method

  1. Heat dates in a saucepan with a few tablespoons water until soft and then mash (you may need to add more water)
  2. Heat honey and peanut butter gently in a pan and then add oats, almonds, apricots, walnuts and seeds.
  3. Add dates and stir well
  4. Spread into greaseproof paper lined baking tray and press down firmly
  5. Bake at 160 for @20 minutes
  6. Remove and leave to cool completely before cutting into squares


Midweek meatloaf

This meatloaf uses turkey mince instead of beef, so it’s a great choice if you are trying to reduce your red meat intake. The basic recipe was inspired by a recipe on the BBC Good Food website but I tweaked it to boost the nutrient content. I use whole grain oats and oatmeal to increase the fibre content and whole grains and more tomato puree (an excellent source of the antioxidant lycopene) than originally suggested.

Ingredients
500g turkey mince
1 large onion
2 garlic cloves
1 tsp Dijon mustard
2 tbsp tomato puree
Dried oregano
75g old fashioned oats
25g oatmeal
1 egg, beaten

Method

Pan fry onion and garlic cloves in rapeseed or olive oil until soft (5 minutes). Then combine with all other ingredients and place into a prepared loaf tin (greased or use greaseproof paper). Cook at 180C (160C fan) for 30 to 40 minutes. Serve with green vegetables and potatoes.

Victoria is a freelance dietitian who splits her time between NHS work, her private practice and bringing up her young family. She firmly believes that when it comes to diet and nutrition there is no “one-size-fits-all” approach. She works with clients to help them achieve their diet and lifestyle goals, using evidence based nutrition advice!

For more information about her services see her website here.  You can follow her on Twitter here or on Instagram here

 

It’s Lymphoma Awareness Month – Meet Ceinwen!

September is Blood Cancer Awareness Month so we thought this was a great time to share the story of one of our founding Directors, Ceinwen.

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Ceinwen (right) with Emma at Shine’s 2016 Great Escape

Diagnosed with Stage 4b diffuse large-b cell lymphoma in 2010, Ceinwen now runs Shine with Emma (look out for her profile soon for #BreastCancerAwarenessMonth) and heads up our fundraising activities, as well as designing our national programmes with Emma, our other Trustees and our amazing volunteers. Having been through cancer, its treatment and its aftermath, Ceinwen’s insight and experience is key to what we do at Shine and helps to ensure that all of our activities meet the needs of young adults with cancer. Read on and please share with others!

When were you diagnosed and what with?

I was diagnosed with Stage 4b diffuse large b-cell lymphoma in February 2010.

How did you find out you had cancer?

At the end of December 2009, I was pregnant. I became really unwell and had my daughter prematurely. The doctors thought that I was experiencing complications from the birth so I don’t think they took things too seriously at first. About three weeks later, I developed such excruciating back pain that I ended up calling an ambulance and going to the hospital. They gave me antibiotics but when I didn’t feel any better the next day, I went back. I then spent three and a half weeks in the hospital seeing all kinds of doctors who were trying to figure out what was wrong with me. Tuberculosis was looking like a good candidate for a while and I remember thinking “that doesn’t sound so bad” but after a chest x-ray they realised I had a large mass in my mediastinum (a part of the body I’d never heard of before!). They also discovered I had “lesions” on my liver – at the time, I also didn’t realise how bad that sounded. Eventually, someone got a haematologist to look at me and he put all the symptoms together. I’d had night sweats, fevers, loss of appetite and unbelievable fatigue – all typical symptoms – but no one had realised I had lymphoma.

What did you think and feel when you were diagnosed?

I had barely heard of lymphoma when I was told I had it. I knew nothing about cancer and was obviously worried I was going to die. I

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Ceinwen & her daughter today

was devastated and worried I wouldn’t get to see my daughter grow up. And then pretty quickly I went numb. I generally managed to hold it together during the day but spent a lot of nights panicking and crying. I was also told that I would have to stay in the hospital for six months receiving chemo and I remember wondering how my husband and I were going to manage work and a baby and cancer all at the same time.

How did the people around you react?

I think they were as shocked as I was by the diagnosis. I had never heard of anyone having cancer and a baby at the same time and neither had my friends or family. I remember thinking “Cancer and pregnancy is a thing?”. For the most part though, they rallied around. I had family and friends come to stay and look after my daughter and help my husband out. I was never short of visitors! If there’s one thing cancer taught me, it is how much I am loved. Whenever I have a bad day now I try to remember that.

What treatment did you have?

I was put on a clinical trial testing a high-dose chemotherapy regimen called R-CODOX-M/IVAC-R. I had a Hickman line and two of the rounds had 15 days of chemo followed by a recovery period, while the other two rounds were 7 days of chemo followed by a recovery period. Part of the treatment is having “IT chemo”. I remember seeing that on my treatment sheet and not knowing what it was. It turns out it is chemo injected into your spine. I was horrified! For me, that was the worst part of the treatment. I had to have it done 8 times and I’d already had a few lumbar punctures and a bone marrow biopsy by then, so by the time I finished treatment I never wanted anyone to go near my spine or back ever again!

How did you feel through treatment?

I know for a lot of people chemo makes them feel terrible, but I was so ill when I started that the treatment made me feel better. I’d been so weak that once the chemo kicked in and started to push back the cancer I felt totally different. I had a period of time where I went days without brushing my teeth or getting out of bed. To be able to get up and take a shower felt like a miracle.

What happened after treatment finished?

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Monthly immunoglobulin infusion done at the hospital

For about a year after treatment, I focused on getting my fitness back. Spending six months in bed is terrible for you and I found it hard to walk for long periods because my feet and back ached. Just as I was getting back into running, I caught meningitis. I ended up back in the hospital for a month and it was then that the doctors discovered that my immune system had really taken a hit as a result of one of the drugs I’d had. My body basically doesn’t produce b-cells properly anymore so I need monthly immunoglobulin replacement therapy to prevent me from getting any more infections. Immunoglobulins are super expensive so I like to think of myself as a million dollar woman.

Tell us about your work with Shine

Shine is my and Emma’s baby! Both of us were diagnosed with cancer as young adults and we both found there was a real lack of support out there. If you aren’t a child or teenager, you get lumped in with elderly patients who may be lovely, but they don’t get what you’re going through. I remember mentioning to some people that I volunteered with how I was missing loads of work because my appointments took all day and they said “Oh, I just pack a lunch and make a day of it”. We had very different perspectives!

I met Emma at the end of 2010 and found out she had started a support group in Dorset called Shine. I’d wanted to do the same thing in London so we decided to work together. Since then, we’ve grown Shine into something bigger than we ever imagined six years ago. Our first workshop in April 2012 had about 20 people at it. Last year, our Shine Connect conference had 100. It’s been amazing to see how many people we’ve been able to reach and support. I always thought that I wouldn’t want anyone else to feel as alone as I did when I was diagnosed. I hope with Shine we’re helping to make that happen.

What difference has Shine made to you?

Apart from loving my job, Shine has also given me friends and support that I didn’t have back in 2010. I still get regular check ups, and aches and pains still freak me out. It’s good to have people I can call up to share my worries with – people who totally get it because they’ve been there. I frequently diagnose myself with other forms of cancer – cancer of the toe, cancer of the eyebrow, etc. etc. – and it’s really good to have friends who understand exactly why I’d be concerned that the bruise on my foot is cancer (and to explain why it’s probably not)

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Ceinwen with some of Shine’s peer supporters at the 2016 Great Escape

How do you feel now about your experiences? What‘s been the biggest change you’ve faced?

I think it can be hard to feel positive about something so awful, particularly something that changes your life so fundamentally. All of the things I thought I would have in terms of family and career changed when I was diagnosed. I was working in international development when I got sick and I remember my doctor saying that the sort of travel I used to do wasn’t an option, at least in the short term.

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Ceinwen working in Kathmandu, Nepal while pregnant – shortly before getting ill.

You can’t ever go back to who you were before, as much as you might like to. Some days, that really sucks. Having said that, I’m in a good place now! I absolutely love all the work we do at Shine and have a lot of fun. I’ve laughed more in the last six years than I did in the six years before that. Having a few life threatening illnesses does give you a different perspective on things!

If you could give one piece of advice to yourself before your diagnosis what would it be?

I remember being really annoyed that I’d managed to get so ill because I thought I was taking care of myself – I was a vegetarian and exercised a lot. Obviously I got sick anyway, so I’d probably tell myself to eat more cake.

You can read more personal profiles from Shine’s community here. Shine also has an private online community that we run via Facebook. To join, send us a request and then send a message to us through our main Facebook page.