Melanoma: more than ‘just skin cancer’

In this blog post, we’re bringing you a cancer experience story written by Caroline, a member of our community who was diagnosed with a rare form of melanoma at the age of 29. She’s keen to raise awareness of skin cancer and share the impact that it has had on her life. As always, please share this blog post and let us know what you think!


I’ve been worried about developing skin cancer since I was 14 years old. I had been stocking up on my favourite fruit-scented toiletries from a certain well-known beauty retailer, and the shop assistant had slipped a leaflet on sun protection into my bag. I’m pale, red-haired, and freckled – and since reading that leaflet, my delicate skin has barely seen the sun. I cover my shoulders in summer, wear sunscreen in winter, and pride myself on staying as white as possible. So how did I get skin cancer?

Mucosal Melanoma

I was diagnosed with mucosal melanoma, a rare form of skin cancer, in May 2017. I was 29 years old. Mucosal melanoma develops on mucosal tissue such as that in the nose, mouth, and sinuses, or in the gastrointestinal tract. In women, it can develop in the vagina, and on the vulva. In men, it may be found in the penis. I’m not going to tell you where my small tumour appeared – but suffice to say, you’re unlikely to see any of my surgical scars!

I spotted a suspicious growth in December 2016, but it took several months – and several

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Guest blogger, Caroline

doctor’s visits – before I had a biopsy. It’s hard not to feel angry about weeks of missed diagnoses, but my disease is so rare that I can’t blame the doctors who dismissed my symptoms. However, I knew that something was wrong, and I’m glad I persevered with return visits until I finally had a diagnosis. I learned early on in my cancer journey that there is nothing more important than being your own advocate. Melanoma can spread quickly, and more than one medical professional has told me that if I had not kept returning to clinics, I might not be here now. It’s a sobering thought.

Initially, my treatment plan was the same as the treatment plan for cutaneous melanoma (the one with the moles): I had a surgical biopsy to determine the diagnosis, and then went back into surgery a few weeks later for a wide local excision and a sentinel node biopsy. The wide local excision involved taking a larger section of tissue from the area around the tumour to make sure that there were no more cancerous cells. For the sentinel node biopsy, two lymph nodes in my groin were removed and tested for melanoma cells. Thankfully, there was no melanoma in my lymph nodes – but if there had been, my diagnosis would have been changed from Stage II mucosal melanoma to Stage III, and I would have had advanced cancer.

Unfortunately, my wide local excision found some more melanoma cells in-situ (pre-cancerous cells, which have the potential to develop into cancer) – so a few weeks later, once I’d healed, I was wheeled back into surgery for a third operation. Then, once I’d healed from my third operation, I had a fourth. And then a fifth. Each surgery delivered the same result: a small area of amelanotic melanoma in-situ. ‘Amelanotic’ means that the melanoma isn’t pigmented. In fact, it’s invisible! In the space of eight months, I went from a healthy, active, young woman who had never even set foot in a hospital, to a cancer patient who had been through five surgeries in attempts to rid her body of a now-invisible aggressive cancer. I can scarcely believe it.

Wow, you look so well!

One of the most difficult aspects of my diagnosis has been looking well. Melanoma doesn’t respond well to chemotherapy, and it is not an option for me. When I first ‘came out’ about my cancer, I was asked a lot of questions about chemotherapy. When would I have it? When would I lose my hair? How could I have a serious illness, but look so healthy? And (the worst): did I actually have a serious illness? Despite all my rounds of surgery, and the trauma that comes with any cancer diagnosis, I began to feel as if my specific ‘flavour’ of cancer was being downplayed. If I mentioned melanoma, I felt as if I had to explain that I had always looked after my skin, and actually my diagnosis was not down to any irresponsible behaviour. As an aside: just wear your sunscreen! And no, I have no idea if that mole on your arm is dodgy…

Cancer messes with your head

Although I know deep down that my diagnosis is serious, it took me a long time to stop feeling like a cancer fraud. Not only do I look healthier than ‘the average cancer patient’ (fun fact: there’s no such thing!), but I can’t relate to many support group discussions about chemotherapy and radiotherapy side effects as I had never had that experience. Even if my cancer progresses, chemotherapy will be a last resort.

Through Shine, I’ve been able to meet others who have ‘just had surgery’ and can relate to some of the feelings I’ve described. It’s unlikely that I’ll ever meet someone who has the same diagnosis as me (if you have mucosal melanoma, please make yourself known!), but it is wonderful to be part of a community that acknowledges all the effects that a cancer diagnosis can have. I don’t have to explain or justify myself anymore!

I’ve only lived with cancer for a few months, yet the experience has already taught me a lot about myself. It matters less and less what other people think or believe about my illness. Instead, I focus on how I feel, and my own perceptions of my strengths and limitations. I’m finally giving myself the space to listen to my own needs – and that could be anything from needing to burn off some energy at the gym, to requiring a lazy day of nothing on the sofa.

It is so important to listen to yourself.

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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.

 

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

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

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?

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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.

 

 

 

 

 

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!


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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!