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.

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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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Improving treatment and support for young adults with cancer in the UK and Europe

What a full on weekend!!

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Jon, Shine’s Fundraising & Comms Officer represented Shine at YCE’s Annual Meeting together with Rachel, one of our fabulous Network Leaders!

Together with Rachel, Shine’s North East network leader, I’ve recently returned from Youth Cancer Europe’s Annual Meeting in Vilnius, Lithuania!! We were so grateful to have met everyone and to have been a part of all of the important discussions that were held.

To be honest, I was very nervous beforehand about going…with my dodgy eyesight I’m not the most confident traveller and I wondered how my anxiety and fatigue would hold out. I find meeting others who’ve been affected by cancer to be really helpful, but big events can drain my steroid induced energy (Shine Camp and the Great Escape were amazing but I regularly had to pull back as my symptoms hit home). My friends are used to me having to take timeout but at the meeting I hoped I’d be able to contribute as much as possible, represent Shine, and bring back the expertise that was shared.

YCE’s website outlines their aims:

“Together we can help shape European policy, collaborate in and promote research, fight for better access to care, for better treatments, better conditions and help fix disparities that exist across Europe for young people fighting cancer.”

And they have a great tag line too: “Giving patients and survivors a voice in Europe”.

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Inspiring speakers at YCE’s meeting

At first, I wasn’t sure what issues young cancer patients in Europe face, or what disparities there are between countries, but the weekend proved a crash course in information, and greatly improved my understanding of the importance of policymaking too.

After cancer in my early 20s and through my work at Shine I’ve become well aware of the need for care to be tailored more to the lifestyle of young adults. I had some idea how government and industry policy influenced care, but at the meeting I was shocked to hear some of the issues that people faced getting access to any care, let alone care tailored to their age! It was inspiring to hear from the organisations working to support younger patients in countries that are still developing systems to reflect young people’s needs.

Many people at YCE were first diagnosed as children or teenagers and many of them are still suffering the impact as young adults. The kind of issues that we explored together are issues I only started going through in my late 20s – but that I’m still struggling with 10 years later. Things like anxiety and living with uncertainty, living with the after-affects of treatment, dating when most of my friends are already well into stable partnerships, the thought of children when everyone around me already has them, and trying to get a stable career when friends have been in theirs for years! Being at the meeting really made me see how the cancer care pathway has to support people as they leave childhood/teenage years, as well as people first diagnosed early in adulthood! As the demands of life change the impact of cancer changes too.

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Chatting through issues about working after cancer in a breakout session

The disparities between countries in terms of access to care became very clear over the course of the weekend, as did some of the practices that were working most effectively. Being at the meeting also made me realise how fortunate we are in the UK to have the NHS. Of course, many of us, including myself, have experienced problems with how NHS services work for younger people and know that there’s room for improvement in terms of specific types of care and in coping with the after effects of cancer. But at the meeting I heard examples of countries where cancer patients have to raise funds for each scan, as well as any treatment that may follow. Processes of diagnosis and referral are often not as efficient as they could be and patients often need to research treatments themselves. While there may be times when we have to research our conditions, fight for them to be tested or argue to access to certain treatments, for the most part we do trust our NHS professionals to make decisions in our best interest.

It doesn’t matter how or when we got here as young adults who are living with cancer, all of us need support to help us live as normal lives as possible. People who haven’t felt their bodies failing them due to cancer may find this difficult to understand. Everyone faces tough things growing up, but a serious illness adds another dimension. It makes it more difficult to live that “normal” life that all your friends appear to be living.

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Prioritisation session for the weekend

One thing the weekend helped me to realise is that change doesn’t need to be either local or national but that together (there were 23 countries represented at the meeting), we can create bigger and more meaningful movement for all. In order for the needs of young adults to be met, we need to improve how we communicate about them to decision-makers. We also need a solid understanding of the policies in our own countries that shape access to treatment and funding for research and new therapies.

As someone who’s had a survivable cancer, I feel a sense of responsibility to increase

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It wasn’t all work! Rachel takes in the view with a glass of wine!

awareness of what I have experienced so that others going through it in the future can have care that reflects their stage in life. Working together with YCE will allow Shine and the other participants to better examine and share practices, support others, and build a voice so that we can have a say about decisions made for us. Cancer patients have power and, if we are knowledgeable enough about how health systems work, we can speak on behalf of the 210,000 young adults currently living with and beyond cancer in the UK, to influence those decisions.

Jonathan is Shine’s Fundraising and Communications Officer. Why not sign up to this blog (see the button at the top!) or follow us on Instagram @shinecancersupport

How running and cycling taught me to cope with chemotherapy

Having chemo? Fancy a run?

For many of us, the answer is a firm “no!”, but in our latest blog, Alison fills us in on how her approach to running and cycling has helped her to cope with her treatment for breast cancer, and we think there’s a lot of wisdom in her approach to breaking things down into manageable chunks. Take a read, let us know what you think – and please do share!


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Blog contributor, Alison Carter

Keeping fit and being a healthy weight have been important to me most of my adult life. As a child and in my teens I was hopeless at all sports (always one of the last to be picked for any team), but I spent hours doing ballet and tap, which kept me fit, flexible and gave me an appreciation of what my body could do. I wasn’t an especially good dancer, but I loved it.

My twenties saw me working hard and travelling a lot for my job, with not much time for exercise. Then as I turned 30, I discovered running and a female-only gym. Both these things made being fit accessible to me, and I had a light bulb moment when I realised I didn’t have to be good at something to enjoy it. I am not fast (my best half marathon was 2 hours 6 minutes), but what I don’t have in speed I make up for in determination. And probably most importantly, I discovered the massive endorphin rush, the so called “runner’s high”, that exercise gave me. What a great stress buster!

A few years later, as my right knee started to fail me, a friend suggested we cycle from London to Paris for charity to mark turning 40. Really???140727_North_Downs_Sportive_0114

Before I knew it, I’d bought a bike and was clocking up miles and enjoying the same benefits that running had given me. The charity ride was tough, but awesome and I’m now an avid cyclist. Through all of this, I developed a real appreciation of how amazing my body is. I may never have a flat stomach, but I love what my body can do for me.

The cancer bomb

So, it was a massive curveball when this January I was diagnosed with breast cancer. How could this be? How could this amazing body have cancer in it? Ok, I’ve had stress in my life and enjoyed plenty of wine, but cancer? Me?

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Having breast cancer treatment – with the cold cap!

I know some people feel their body has let them down when they get cancer, but I think it’s just really bad luck. I had no choice about getting cancer, but I can choose how I deal with it. My feeling is that how I treat my body is my best defence against the cancer coming back (my cancer is stage 2, grade 3). And I’m sure that being fit going in to breast cancer treatment has made a difference.

What cycling has taught me 

I’m just about to have my last round of chemotherapy (number six of FEC-T), to be followed by radiotherapy and Tamoxifen. Treatment is tough, but I have been able to bring to it what I have learned from running and cycling, and this has really helped me.

Treatment plans are subject to change, but it’ll be about eight months in total, so, I broke it in to chunks, as I would any long run or bike ride, with five clear stages:

  1. Surgery
  2. Chemo
  3. Radiotherapy
  4. Tamoxifen
  5. Recovery, the new me, after eight months.

When I cycle a long bike ride, such as Ride London, I train for it for months to prepare. Strangely, this is now how I view the last 15-odd years of my adult life: building a physical and emotional resilience that I never knew I’d need until the cancer bomb was dropped.

When I’m on a ride, I’ve learned that breaking it down to goals gets me through. I didn’t invent this, it’s standard practice; your brain usually gives up before your body does in such events, so finding the psychological plan is key. My first goal may be getting to the feed station at mile 19 where I know there’ll be flapjacks and so on. Experience has also shown me that I get a dip midway on all long rides and runs. I start to tire or pain or injuries start to niggle, and the end is not in sight yet.  In my head I desperately want to give up.

My treatment has been so very similar to this: one phase at a time, then one chemotherapy at a time, setting goals and rewards, and remembering that there will be a midway dip, but I’ll get through it.

After chemo round three I fell in to a huge dip, and I could happily have given up at that point. My hair was falling out, everything tasted of cardboard, my veins hurt and I had constant acid reflux and nausea. I was exhausted. Mentally and emotionally I was spent. But I took it one day at a time, just as I would have done on a tough run or ride.

On my good days, as I emerge from the side effects, I go for walks, do a spin class when I feel strong enough (I have to lie down for two hours afterwards!) and make sure I have goals that will give me a sense of purpose and achievement. As a result, during chemo I have done a Race For Life and cycled the Pink Ribbon Tour in London. I also ensure I have plans to see family and friends on my good days. These things exhaust me, but they fill my soul. I’ve learned to pace myself through cancer treatment just as I do through a run or bike ride.

My last chemo is next week. I know I’ll have a tough week where I lose myself to side effects, but one day at a time and it’ll be done. Then I can focus my energies on rebuilding myself ready for the next phase. That first finish line is almost in sight.

For many years, Alison was a fashion buyer. She now leads the creative photo studio for a large UK retailer. Working to to squeeze as much out of life as possible, she can often be found either on her bike, in a theatre, talking to her cat, at an art gallery, or having crazy fun with her niece and nephew. You can follow her blog here.  

For tips on how to support a friend with cancer, take a look at this blog entry. And for a list of things NOT to say to someone with cancer, read our blog here. 

 

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.

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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.

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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!

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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.

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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.