Taking care: How and why ‘carers’ also need support

A few years ago, the partners of a couple of Shine members approached us about starting a ‘Plus Ones’ group. Having cancer is tough, they noted – but so is supporting someone with cancer. We started our Plus Ones group online and it’s continued to grow over the years. As we’ve worked more on supporting the supporters, we’ve also learned more about the issues that they can face.

In this blog, Dr. Jason Spendelow (one of Shine’s original Plus Ones) outlines some of the issues that ‘carers’ often face when supporting someone with a life-limiting illness. We know a lot of Plus Ones don’t consider themselves carers (78%, according to a recent survey that Shine carried out!) but we hope this gives you some insight into the support that someone looking after a young adult with cancer might need.


 

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Those who provide significant levels of care to another person are more than twice as likely to suffer from poor health than non-carers.

While carers do report many positive experiences, the physical and psychological wellbeing of this group is often compromised due to the stress associated with the support they provide. Those who provide significant levels of care to another person are more than twice as likely to suffer from poor health than non-carers (Carers UK, 2004). When asked directly, the vast majority (84%) of carers said that caring had a negative impact on their health (Carers UK 2013). Carer wellbeing, then, is a particularly important topic in cancer and other chronic illnesses. Carers provide a huge amount of support to loved ones affected by these illnesses. This means it is even more crucial that we take care of the carers.

Mental & Physical Health

We have an increasingly large pile of research available on carer wellbeing. From this, we know that psychological issues are among the most commonly reported difficulties amongst carers (Stenberg et al 2010). An important concept here is ‘carer burden’, which refers to negative emotional experiences that occur from providing care. The level of carer burden varies from person to person, with higher levels of burden being linked to female carers, living with the care receiver, spending large amounts of time caring, being socially isolated, under financial stress, and having no choice in becoming a carer (Adelman et al 2014).

Carers can experience a range of psychological difficulties. Some of the most common issues tend to be low mood and depressive symptoms, elevated levels of stress and anxiety, and lower quality of life (see for example, Braun et al 2007; Pinquart 2017, and Easter, Sharpe and Hunt 2015). Rates of depressive and/or anxiety disorders are higher amongst adult carers when compared to the general population. These figures do not mean that you are destined to develop such psychological issues, but carers are clearly more vulnerable. In late 2016, Shine carried out a survey of Plus Ones and found that 58% had experienced stress, and 77% had experienced anxiety.

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Shine’s first Plus One workshop covered how to cope with anxiety.

In addition to psychological difficulties, carers can experience decline in their overall physical health. Physical health problems vary and range from fatigue to insomnia, headache and gastrointestinal issues (Jassem et al 2015).

Positive Experiences

Despite the physical and psychological challenges discussed above, many carers can also identify positive aspects of their experience. Some of the reported positive experiences included being able to give back to someone, knowing the person is being well cared for, improved relationships, personal growth, and an enhanced sense of meaning or purpose (American Psychological Association 2018). Finding meaning and purpose is an experience reported across several groups of carers (Carers UK 2004). Being able to help is a source of satisfaction for many carers, while ‘giving back’ to someone and having an equal or reciprocal relationship are other positive outcomes (Spendelow, Adam and Fairhurst 2017; Buchanan et al 2009), Ribeiro and Paul 2008). The relevance to wellbeing is that experiencing positives from caring help people to cope better with the stress that comes their way.

Taking care of yourself

Your wellbeing is influenced by many factors. Believing that just one ‘thing’ is the cause of any experienced psychological difficulties is usually inaccurate and unhelpful. Attempts to improve your wellbeing, therefore, usually involves taking several factors into consideration. Look, I could bang on here about all the things you know you should be doing already: getting plenty of sleep, exercising, and eating vegetables. Yes, this is all true and fundamental to your health. But I won’t repeat the same advice given millions of times already.

Perhaps a more useful strategy is to ask ‘What barriers stop you from taking better care of yourself?’ and, more importantly, ‘What can you do about these barriers?’. Some barriers are physical: for instance, you don’t think you have time to look after yourself. Other barriers are psychological. For example, some carers feel that it is selfish to prioritise themselves over the loved one they support. Asking what barriers exist (and why) helps work out what might have gone wrong with previous failed attempts to take better care of yourself. These barriers need to be directly addressed, otherwise it doesn’t matter how many times you are told to go for a walk and eat some broccoli.

It may be that you need to discuss this issue with a sensible person that you trust in order to make progress with your wellbeing. Having said this, here are a few questions you can ponder to get you thinking more about barriers to better self-care:

  • What emotions might you experience if you put more time into self-care?
  • Why do you think you would experience those particular emotions?
  • What do these emotions say about your attitude to self-care?
  • What would have to change in your life to result in more time given to your wellbeing?
  • How might the wellbeing of the person you support be negatively affected if you spent more time looking after yourself?
  • What would be the worse thing someone could say about you as a carer? How does that influence your self-care?

 The Bottom Line

Carer wellbeing matters, both to the quality of life of the carer, and the wellbeing of the loved one that the carer supports. To cope with the huge challenges brought about by cancer, you need to be thinking of self-care strategies that are positive and sustainable over the long-term. If you fall over, both you and the person you care for will find things even tougher. Thinking about barriers to self-care can be a useful way to better understand your current approach to your health, and how you can improve it.

Jason is a clinical psychologist with a special interest working with people and their carers affected by chronic illness and disability. He also supported his wife through cancer. He runs his practice in Surrey. See more at www.jasonspendelow.com

To join our Shine Plus One Facebook group, click here. To join the mailing list for Shine Plus One events, please email plusone@shinecancersupport.org.

 

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How pets can help you cope with cancer

When the going gets ruff, the woofs get going: How pets help us to cope with cancer

Sarah Carlin (33) who has small bowel cancer and lives in Liverpool, explores how Shine members’ furry Florence Nightingales are helping them live better with cancer…


I’ve been dealing with cancer since 2013. It’s as about as much fun as it sounds.

During a particularly dark period recently, I realised that one of the few things capable of raising a genuine smile was my dog Elsie, a Cairns/Yorkie cross with about nine teeth and breath like the bottom of a fishing trawler.

My 50th attempt at taking a selfie with Elsie

Sarah and Elsie

I then remembered all the other times that pets had helped me through. Pre-diagnosis, when I would spend hours lying in bed, throwing up industrial amounts of green bile into a washing-up bowl, my mum’s cat Flo – who, it has to be said, would probably at that stage not have said hello to me in the street if she were human – would come to my bedroom and gently knead me with her little paws. When I was feeling better again, she’d get back to blanking me. During chemo, our family dog Bunk – a rescue Staffie cross who definitely missed his calling as a late 90s emo – would come up to my room and lay a heavy black paw on my stomach, as if to say “I understand”.

With a hunch that I wasn’t the only one being looked after by my pets in this way, I asked the Shine community about their own experiences with furry friends in Shine’s closed Facebook group. It quickly turned into a love-fest about all things on four legs, for the following reasons:

1. They’re a reason to get out of bed (and the house)

Alison's SuzyQ

SuzyQ

Owning a pet dog is like having a weird hybrid of a physical therapist, life coach and in-house dirty-protestor. Crippled by fatigue? So depressed you don’t want to get out of bed? Struggling after a big operation? They don’t want to hear it. They want you out of those PJs and taking them round the block, stat, or they won’t be responsible for the consequences. And they can’t promise that those consequences won’t be coming via their digestive system either. And even pets that don’t need to be walked – like cats and rabbits – need to be fed and watered.

 

The positive impact that this responsibility has can’t be

Fran's George

George

understated. One Shine member, Julie, remembered that her dog Izzy helped her recovery from an operation for bowel cancer by getting her active again just seven days after surgery. Fran, diagnosed with chronic myeloid leukaemia at 29, said her cat George was her “reason for getting out of bed every day, no matter how rubbish [she feels].” And Alison, who had treatment for breast cancer recalled that her cat SuzyQ gave her “a sense of purpose and unconditional companionship”.

2. You can share in their joy – without the complicated feelings

When you have cancer, especially as a younger person, you often feel disassociated from your peers. It’s great spending time with your friends, but sometimes it’s tough seeing the life you could have been living if the C-bomb hadn’t been dropped on you. You know, having babies, having hair, being able to get travel insurance without selling a kidney (which nobody would want to buy anyway, obvs) or just being able to plan something in three months’ time without factoring in worst-case-scenario scan results. Basically, whatever you’re doing, whoever you’re with, cancer is there in the background like a sinister ostinato, reminding you that life isn’t as you hoped it would be – something that can be really destructive to your relationships and your state of mind.

How pets can help you cope with cancer

Your interactions with pets will carry no such baggage, however. You can truly be in the moment and share in their enthusiasm for life, whether that’s chasing a ball, trying to swallow a piece of cake whole or their absolute joy when you walk through the door after-surely-abandoning-them-forever (a.k.a. going to the shops for half an hour). You can share in their perfectly mundane triumphs with no complicated feelings. Unless, say, you had a real love for Chappie dog food but ate too much after a chemotherapy session once and now you’ve gone right off it. Or you used to love chasing mice but your oncologist has told you to knock it on the head because it’s an infection risk.

3. They bring the lols

How pets can help you cope with cancer

Elsie makes me laugh every day, whether through her world-class meerkat impression, her iron will or the fact that whenever we walk past the British Legion, she always, inexplicably, tries to go in (FFS Elsie, you’re barred!). And I’m not alone. Lisa, who has bone cancer, said her little dog Coco “brings a smile to my face every day…brings happiness and makes every day worth living.” And Christine, who has bowel cancer, said that her bunnies, Marigold and Juniper, “always make me smile even if I’m feeling awful.”

Christine's Marigold & Coco

Marigold and Juniper

 

4. They really care

I was blown away by the number of people in our Facebook who shared stories of the TLC given to them by their pets. There were dogs trying to ease painful legs, horses sensing when their owner was having a bad day and amazingly, given the fact that they have reputation for being the haughtiest of the household pets, an awful lot of very caring cats who would be a real asset to the NHS.

Lyndsey, who has Hodgkin’s Lymphoma, remembered that her kitten, Stinky – who she adopted during treatment – would carefully settle into the crook of the arm that didn’t have a PICC line in it and purr her to sleep. Another Shiny, Jo, who has metastatic breast cancer said that her “Bichon baby” Pixie who “curls up with me in bed when I feel poorly and keeps the cuddles coming when I feel low” helps her cope with her situation.

Jo's Pixie

Pixie

5. Sometimes, it seems they can perform their very own PET scans (boom!)

One thing I wasn’t expecting when I put my post up was the number of people who had stories about their pet appearing to try to alert them to the fact they had cancer. Tracey remembered that her cat would always lie on the breast that had cancer pre-diagnosis. Anne’s dogs Buster and Lucky started to repeatedly snuggle into her left armpit, which prompted her to do a self-check and find a lump that was eventually diagnosed as aggressive triple negative breast cancer. And one of Danielle’s dogs kept digging on her leg so much that it prompted her to go to the doctor in case she had some sort of infection. It was actually a chondrosarcoma. That animals can sniff out cancer is actually a recognised phenomenon; some sharp-nosed pets are already being used to assess urine tests in the NHS. You can read more about the science behind it here.

We loved talking about our animals and I’m so glad that I – and so many other Shine members – have pets that are helping us through some very tough times. Here’s to a very furry Christmas and a yappy New Year!

PS We couldn’t fit all the pet photos that were submitted into this story. But they’re below if you want a quick look at the Shine Super Pets!

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

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

Breathe and bend! How yoga can help you cope with cancer

Every year, at Shine’s Great Escape, we run morning yoga sessions for our “Escapees”. For many, it’s the first time they’ve tried yoga and most people are pleasantly surprised by how much they get out of it.

In this blog, Stephanie Bartlett shares her experience of starting yoga during her cancer treatment and how it’s helped calm her busy mind.  Want to learn more? Below Stephanie’s blog, we’ve posted some ‘getting started’ tips from Shine’s yoga guru (and podcast host) Tatum de Roeck!


StephAndTheo

Stephanie with son Theo

Last July I was diagnosed with cancer.  As a young and healthy 32 year old, I certainly wasn’t expecting it, though I have learnt very quickly it genuinely doesn’t matter who you are or how ‘healthy’ you thought you were.

Cancer for me has been ‘mind consuming’. In the seven months since my diagnosis, my mind has been consumed with everything cancer related, from the seemingly endless weeks of waiting for test results to the side effects of 18 weeks of chemotherapy to the apprehension of the next course of treatment; there was just no getting away from it.

That was until I discovered yoga. My very first yoga session consisted of some simple breathing techniques and some basic stretching and relaxation. I followed my instructor and it was very peaceful. I found it easy and I soon realised that an hour had passed and I hadn’t thought about cancer.

I can only describe how I felt after my first session as a balloon floating in the sea. I felt present in the here and now.  My mind felt completely empty.  No thoughts had entered my mind the entire time. I had no idea what it felt like to be free of the constant cancer woes until then. I also felt very relaxed, like a weight had been lifted off my shoulders and like I was finally lightened of the burden.

I continued to practice yoga with my instructor about once a fortnight and before I knew it I had learned a whole yoga flow and every session we were adding to it. I was also learning more how good it was for my mind and body. Post-surgery and during chemotherapy I looked forward to each session as I viewed it as my escape from cancer. I then found myself doing yoga on my own at home in the days in between seeing my instructor – I could finally escape cancer every day. I knew exactly what to do and I loved it.

The truly great thing about yoga is that no matter how I was feeling or how physically able I was (and this changed from week to week, with the effects of surgery or chemotherapy), I was always able to do yoga. And it’s really not about getting one leg wrapped around your neck while balancing in the shape of an elegant swan – rather, it’s all about connecting with yourself and using your mind and body no matter how much you’re able to move.  Basically, we can all do it, no matter how flexible you are.

As a busy and working mum to my five-year-old son, Theo, I’m constantly on the go.  Life is always eventful and there’s no escaping the constant need to be somewhere or do something.  This consumed a lot of my thoughts before cancer and adding cancer to that mix made life even crazier. Yoga enabled me not only to calm down my mind but also to focus on simply moving and breathing.  It lets me forget the chaos that life has thrown at me and it enables me to put into perspective the important things that are worthy of my attention. Most importantly, it also helps me forget about the pointless little things that can fill the gaps.

I have certainly caught the yoga bug; I now know a moon flow, what sun salutation is and can do my warrior poses.  During each of these yoga flows, the actions and breathing are the only things on my mind. Even before the cancer diagnosis I didn’t know it was possible to escape; I’ve always had a busy mind so for me it’s been a real eye opener. Steph1

I cannot recommend yoga enough to anyone going through a cancer diagnosis or treatment – an even those that aren’t. I once thought “oh, yoga is not for me – it’s too airy fairy”.  How wrong I was!  I have even booked myself onto a four day yoga retreat in Spain, as a reward once all my treatment is over. It’ll involve hours of yoga, relaxation and a well needed break in the sun.I genuinely never believed yoga would help me as much as it does but I honestly love what yoga does for me.  Give it a go, you won’t know until you try it!

Stephanie lives with her son, Theo, who is five, and she was one of Shine’s 2017 Escapees. To learn more about the Great Escape, click here. And if you’re interested in trying yoga, read on for a briefing by our yoga instructor (and podcast host) Tatum de Roeck!


Thinking of trying yoga after cancer?

Three months after Tatum de Roeck qualified as a yoga teacher, she was diagnosed with breast cancer.  Below, she shares her tips for getting started with yoga. Tatum

Even knowing quite a bit about yoga, I was still daunted going into a new class when my body felt so alien. It was tough dealing with feeling physically limited, emotionally all over map and mentally frazzled. What made it easier was having an idea what to expect from a class and how to find the right one.

I now teach yoga as my main job and give classes as part of Shine’s Great Escape weekend. Many Escapees have never done yoga before and the class has given them the chance to find out they rather like it! So for others who think they might fancy giving yoga a whirl here are some tips and thoughts to help make finding the first class a little easier.

Yoga is yoga, right?

Not all yoga is the same. The spectrum of classes range from ones where all the poses involve lying down on the ground with cushions and blocks, to hot sweaty powerful classes that seem to be created for acrobats from Cirque du Soliel.

I’m not flexible, can I still do yoga?

Yes! Yoga isn’t about what it looks like on the outside but how it feels inside your body. You can be one millimetre into a pose and feel the benefit of the stretch. If you feel it, that’s your pose and it is perfect. Someone else might have a different rotation in their hip joint and their legs may impressively flop out, but they may be working on how to engage their muscles instead which might be just as much of a challenge. It’s good to bear in mind since everyone’s body is wildly different (and always changing) we don’t bend to yoga, it is yoga that should bend to us.

Starting Slow

Slow classes give you time to try a pose, see if it’s right for you and adjust as needed. Even if it’s a super relaxing class it gives you a chance to hear some yoga terminology, become familiar with teachers providing different options, and to build confidence for trying the next class.

How do I find a slow class?

If there is a yoga studio nearby I would either pop in or give them a call to ask if they offer a relaxing, slow or gentle classes. Some bigger studios sometimes even offer classes handily named something like ‘yoga for people with cancer’. Most mid-size studios will have great introductory offers of unlimited classes for a couple of weeks. This can be a really useful (and far cheaper) way to try out different classes. Sometimes yoga classes at the gym are unhelpfully labelled ‘yoga’. In these cases its useful to get some more info otherwise you might be in a sweaty power hour territory.

The key things to ask is it is suitable for beginners and is it gentle? If possible it may be good to see if you can briefly contact the teacher before you plan to take the class.

A lot of cancer centres like Maggie’s also offer yoga and if they don’t offer yoga on the premises it’s worth giving them a call to see if they know a place or a teacher they’d recommend.

What do I wear?

The main thing is to wear something comfortable, which doesn’t restrict movement but isn’t too loose. The reason we don’t wear baggy T-shirts is because some of the poses (like a forward fold or child’s pose) will cause loose T-shirts to ride up exposing the stomach and lower back or rising so much it covers your face. Very baggy shorts can also show a bit more than you bargained for. If this happens you spend the class fighting with your clothes which takes away a little of the joy (I’m relaying this from personal experience!).

Getting to the first class early

It’s a good idea to get to your first class 15 minutes early. There will be forms to fill out and it’s a good time to talk to the teacher before the class starts. You can let them know you are trying yoga for the first time, that you may need to take it easy or have a part of your body where there is a limitation of movement. They are the best people to give you a bit of an idea about what to expect in the class.

Do I need to do all the poses?

Nope! Yoga is about being in the body and feeling out what is right for you. Anything that causes sharp pinching pain or any sensation which takes your breath away is a sign from your body saying that position isn’t right for you at that time. If this happens you can come out of the pose slightly or fully. There is a pose called child’s pose which is the go to position any time in the practice. It’s the pose to regain your breath, to rest or simply stay there until another pose that you might like comes along.

Giving it another go

Since there is such a variety in yoga styles, teacher personalities and range of environments it is worth giving yoga more than one class to really determine whether or not it’s right for you. If you find it ultimately isn’t what you want at the moment that’s totally ok too! You’ll know what it is and that it’s there if you ever want to come back to it.

Ask for Recommendations

One of the best ways to find a class is to ask others who have tried and tested classes already.  In the comments below, feel free to share your experiences and any places or teachers you love. You never know another Shiny person may be in your ‘hood and looking for a class!

 

Meet Jonathan!

There aren’t many jobs where having had cancer works in your favour, but here at Shine it strangely does. Today, our first ever Programme & Administrative Assistant, Jonathan, starts working with us and we couldn’t be more excited! We were delighted when we met Jon and found that he had both the skills and enthusiasm we wanted – and also that his own experience of cancer meant that he totally gets what our work means.

Jonathan grew up in Bournville, Birmingham (with the scent of Cadbury chocolate in the air!) going to drama classes, singing, playing the piano and building a huge Lego collection. He studied acting at university and is now based in Poole. Jonathan will be helping to ensure that everyone has a great time at Shine’s national events and that as many people as possible know about Shine’s work via social media. We asked Jon to write his personal experience of cancer so that we could all get to know him.  Read on to learn more!


What were you diagnosed with, and when?

jonathan-smith

Shine’s new Programme & Administrative Assistant, Jonathan

I was diagnosed with a malignant brain tumour (pineal germinoma) in 2007 which had spread to my spine.

How did you find out that you had cancer?

Unquenchable thirst and un-ending trips to the ”porcelain throne” were my first strange symptoms in 2004. I was told constantly by my GP that I was a “healthy young man”. It was 2006, when my weight had dropped to below 7 stone and I’d begun to see double, that my GP finally referred me to eye hospital.

After identifying (and filming) a rare eye condition, the eye department sent me for a MRI scan which revealed a ”small benign lesion” pressing on my pituitary gland and optic nerve. A pituitary condition (diabetes insipidus) which was causing my water problems was also belatedly diagnosed.

On 27th March 2007, I woke up barely able to walk or speak, and emergency brain surgery finally revealed I had a malignant tumour.

What did you think and feel when you were diagnosed?

I had no idea what a “lesion” was or that it could mean “tumour” or “cancer”. I continued working for a year not thinking anything of it and just coping with the daily symptoms.

Everything changed following surgery as I understood that the tumour was life-threatening and what the treatment entailed. I always felt fortunate knowing that it was likely to be curable and I didn’t feel scared as I was determined to do everything to get through. But I was naive about what that would involve.

How did the people around you react?

People at work really supported me throughout the strange symptoms while I continued to work and once I began treatment. They took me out and visited when I was able and kept me sane.

My parents and family were there for me 100%. I moved in with my folks and there were times when they had to do everything for me. I reacted badly to medication and radiotherapy and changed so much with the hormonal effects and tiredness, but they were always positive that I’d return to my old self.  I know it was really difficult for them and my sister to see my anxiety and panic attacks but not once did I see them get upset or short-tempered with me. Legends!

What treatment did you have?

The brain surgery (an endoscopic third ventriculostomy) relieved the pressure on my brain. I was then put on high calorie drinks to increase my weight and strength in prep for six weeks of radiotherapy.  I was also on dexamethasone which caused my longest stay in hospital as I reacted badly to being weaned off the drug following treatment.

For a couple of years afterwards I still had regular tests to determine what hormones had been affected and I had six monthly MRI scans until 2012 to ensure the tumour was completely gone. Physiotherapy helped my walking and counselling helped me cope with the hormonal and emotional impacts of the illness.

How did you feel through treatment?

I felt in limbo after the surgery in March 2007 as I waited for radiotherapy to begin in July. I was determined to increase my weight but felt very apprehensive about the effects of the rays. Unexpectedly those three months also gave me time to sit back, to think, to appreciate the everyday things in life that you don’t notice when rushing about in work (I enjoyed the changing seasons). I felt really close to my parents as they cared for me day to day and I found comfort in creativity, drawing, writing and art.

Anxiety, tiredness, restless legs and other nervous system effects of medication and hormone deficiencies had the biggest impact. I became withdrawn, found talking very difficult, couldn’t tolerate loud noises, music, follow conversations or cope with any confrontations. During the withdrawal of dexamethasone I began to think my brain had gone AWOL as I had panic attacks and couldn’t cope with stimulus at all.

What happened after treatment finished?

It was tough getting my life back on track and returning to work, handling my new anxiety, energy and physical conditions and getting accustomed to being partially sighted. I developed techniques to manage the effects and to help me get used to my new day-to-day reality.

The support of friends and family was uplifting but my condition made it very difficult for me to socialise, and I felt pressure to return to “normal”. I felt a need to push myself, taking a new promotion within weeks of returning to work, which I wasn’t ready to cope with.

Starting a part-time Masters degree gave me something else to focus on and work towards other than just getting better. I was incredibly thankful that the medical profession were able to cure my tumour but also became very aware of my own mortality and that of people around me. I felt a responsibility to make the most of every second which also brings pressure.

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

My advice to my pre-treatment self would be to value more the support of friends and family and to accept that you’re not going to be on top form when they see you; it won’t matter to them anyway. Oh, and to ditch the red paisley head scarf!

What excites you about working for Shine?

I’m really excited about joining with Shine to be able to contribute to others’ awareness of the help available through treatment, while recovering, and adjusting to the aftermath of cancer and also how it changes you. I appreciate how having cancer early in life interrupts everything, alters your outlook and future, and I also feel the unfairness of incurable diseases limiting lives that are just beginning. I’m motivated to make sure that others going through this are aware of all the great events and support Shine provides. I’m really looking forward to helping young people feel they’re not alone, that they can face this together, and to help them forget for a while the battles they’re having.

Any big plans for 2017?

2017 marks 10 years since my diagnosis. Although the tumour has left me partially sighted I’m enjoying better eyesight following a recent operation. I’ll also be testing a new drug to improve my hormonal jiggery-pokery. I’m making the most of moving from London to Dorset, where my parents and sister (and new nephew) live, and can’t wait for summer by the sea!