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.
October is Breast Cancer Awareness Month and, having shared the story of one of our Directors last month (for Blood Cancer Awareness Month), we thought we would share the story of Emma, our other founding Director this month. Diagnosed with breast cancer in 2006, Emma experienced the isolation that often comes with a cancer diagnosis and is all the more acute when you’re young. Way back in 2008, Emma started meeting up with other young adults with cancer and the roots of Shine took hold. Today, Emma runs Shine with Ceinwen and is Shine’s Director of Operations and Training. Read on to learn more about Emma and why Shine does what it does!
When were you diagnosed and what with?
I was diagnosed with breast cancer in June 2006. I had two tumours and the cancer had spread to five of my lymph nodes. I also had unconfirmed spread into my breast bone and the lymph nodes in my chest so I’m still not 100% sure what stage my cancer is/was!
How did you find out you had cancer?
Early in 2006 someone drove their car into the back of mine while I was stopped at some traffic lights. I had whiplash and sprained ribs and was having physio. I found a lump in my breast that was next to one of my ribs so the GP thought it was a bleed caused by the accident but said he would refer me to the hospital anyway. When I finally got my letter from the hospital, the soonest they could see me was in 12 weeks time (this was before the two week wait was introduced in the NHS). While waiting for my physio appointment at a private hospital (I had BUPA through work), I noticed a sign for a specialist breast centre so I figured I’d get an appointment there as I had already paid my insurance excess! I was seen the following week and was sure that they were doing all of the tests to get more money from the insurance company!
I was so unconcerned about the follow up appointment that I went to receive the results on my own on the way home from work. The words from my doctor – “I’m really surprised but it is a little cancer” – will always stay in my mind. I remember thinking ”what’s a LITTLE cancer??”
What did you think and feel when you were diagnosed?
Because I had come in alone, the consultant suggested that I call my partner and come back in when he arrived. I was in shock. I can only remember certain phrases like “you’re so young that we’ll throw all of the possible treatment at you” and “normally we aim for five years survival but, with your age, we are going for 20”. I remember thinking that I would still be in my 40s after 20 years and that that wasn’t long enough.
Over the next few days, I went into planning mode to deal with work, friends, family and the huge number of hospital appointments that I suddenly had to fit in. Looking back, I coped by focusing on the practicalities such as finding pyjamas for hospital that buttoned up at the front (surprisingly difficult!).
How did the people around you react?
My partner and family were as shocked as I was. We had no family history of cancer and I hadn’t met anyone who had dealt with cancer at my age before. I really thought that it only happened to older people.
Everyone tried to help with practical arrangements but I avoided a lot of my colleagues and friends as I felt awkward dealing with their reactions. I lost count of the number of times I heard phrases like “but you’re too young for that” (I know!) and “my uncle’s brother’s wife’s sister had that – oh, she died” (thanks, that’s really helpful!).
What treatment did you have?
I started with surgery to remove the original tumour but, when I went into surgery, they found another one. I had a lumpectomy rather that the mastectomy that would have been recommended if they’d known about the second tumour. I decided not to go back for the full mastectomy as my surgeon had got clear margins (it’s amazing how much jargon you learn!).
My oncologist then recommended a CT scan and a PET scan both of which showed up “dodgy bits” in my breastbone and the lymph nodes in my chest. At the time, I didn’t really understand the difference that made to my diagnosis but as the next lot of treatment would have been the same anyway, we went ahead with chemotherapy.
We also discussed the fact that I hadn’t had children and talked about options to preserve my fertility. My partner and I discussed it and decided not to take any of the options as they meant delaying chemo. I started my treatment with injections into my stomach to send me into a chemical menopause.
All together, I had 8 rounds of chemo, given every three weeks (FEC-T) and also started on infusions of Herceptin that went on for a year. I also had six weeks of daily radiotherapy to the remaining breast tissue and into my neck and I also started taking Tamoxifen tablets, (though I later switched to Exemestane). I stayed on the injections and tablets for 7 years in total. I used to say that I would rattle if I was shaken!
How did you feel through treatment?
The surgery wasn’t too bad as I was in a lovely, swanky private hospital with three course meals and a wine list! It was a bit scary having the anaesthetic though – and a bit weird coming round and finding myself halfway through a conversation that I couldn’t remember!
Going straight into menopause was also bit of a shock to the system. Overnight I developed massive hot flushes and sweats and felt like an old person when I tried to get up from the sofa.
The chemotherapy wasn’t as bad as I expected it to be but it did get worse as I went through all eight rounds. By the end of it, I had absolutely zero energy and felt like I’d been hit by a truck. My veins also decided to stop working so I agreed to have an operation to implant a portacath. This meant that the Herceptin could be given straight into a port under the skin in my chest which had a tube leading straight to my heart (sounds scary right but it definitely made life easier!).
My treatment went on for 7 years in total and I still take some tablets to deal with the after-effects of the treatment. After each type of treatment finished, I was worried about the cancer coming back as I felt like I was losing some protection they gave me. I still find the regular scans frightening though. I haven’t found a way to remove that ‘scanxiety’ completely but it is much easier with my Shine family around me.
Throughout treatment I thought that, once I was done with the main treatments, that my life would go back to normal. That never happened and when the hospital visits slowed down and treatments came to an end, I felt as if I had been abandoned to work out what came next. I felt like I was living in a ‘should be’ era – I should be feeling amazing that I’d come this far, I should be able to pick up my life from where it left off…. I am naturally a very positive person and I didn’t initially recognise that the feelings that I was having were of isolation, anxiety and depression.
It took nearly three years for me to admit that I was still struggling and to take steps to get help. It is not an understatement to say that my amazing counsellor, Kathy, changed my life completely. With her, I was finally able to sort through the mess of everything that I thought I ‘should be’ feeling and to talk through the experiences I’d had through treatment and beyond. At first I couldn’t understand how talking about it would help but it enabled me to face the anxieties I had been holding on to and to feel more empowered about my future, whatever that holds.
Tell us about your work with Shine
Throughout treatment, the “you’re too young” comments kept coming and the support groups that I attended were full of people showing me photos of their grandchildren! Eventually, I met the amazing Justine through a random breast cancer chat room. She was just a few years older than me and had also been through treatment for breast cancer. We met for coffee which ended up lasting four hours and I suddenly realised just how isolated I had been.
That meeting led us to start Shine (although we didn’t have a name!) and we decided that we should reach out to other younger adults with all types of cancers. In the first year we connected with over 100 people in Dorset and it felt amazing to make sure that other people didn’t feel as isolated as we both had. We had fun too, doing things that suited us (mainly bars and coffees!) rather than the standard cancer support group format. And thus, Shine was born….
Meeting Ceinwen in 2010 was the next brilliant coincidence. Ceinwen had been diagnosed with cancer shortly after having a baby (you can read her story here) and was looking to do something similar to Shine in London. We met for coffee, which again lasted 4 hours (be careful if we ever have coffee together!), and we realised that we had a lot of similar ideas about the lack of support that was available to younger adults diagnosed with cancer. Together we started work on the ‘Small c’ Project, the first research project in the UK to look at the needs of young adults with cancer. We then went on to develop a programme of activities and events that aim to meet those needs.
We also started setting up Shine Networks in other parts of the UK, giving people the chance to meet others in similar situations much more quickly that we had been able to.
The feedback and stories we heard from the people that Shine supported in the early days quickly made my career (banking – sorry!) seem much less important and certainly less rewarding. I eventually left my career in 2012 to fully focus on Shine. I have never regretted any part of that (despite the massive impact on my bank balance!) and absolutely love my job, even on a Monday morning – and at 2am on a Sunday as it’s not really a 9-5!
Nowadays, we are both still working hard to reach the 30,000 young adults diagnosed with cancer each year in the UK and to develop more programmes to fill the gaps in support that still exist for young people dealing with cancer.
What difference has Shine made to you?
Personally, I now have a huge network of people around me that just “get it”. I can talk to people about things I wouldn’t put on my “normal” friends. I also have people that also get the dark humour and the fact that you’re definitely not being ‘negative’ by talking about your funeral music or not planning too much for the future!
I love to feel like what we do makes a difference to peoples lives, and I still sometimes can’t believe what we have achieved in just a few years (mainly because I’m always thinking about the things that we need to do in the future!). In short, Shine has definitely changed my life for the better!
How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
I’ve just passed my ten-year ‘cancerversary’, but the fear of my cancer returning is still there. Certain things still trigger the trauma of some of my experiences through treatment and I don’t think that will ever go completely. However, I am much more able to deal with the scary bits now and, of course, know amazing people who help and support me.
I don’t feel grateful for having cancer. Instead, I feel grateful that I have been able to channel my experiences into something that helps other people and also brings me personal joy and fun. I try not to stress over the small stuff and I honestly appreciate much more about the wonderful people that surround me.
If you could give one piece of advice to yourself before your diagnosis what would it be?
This is hard! I felt invincible before I was diagnosed with cancer and I think most people in their 20s (or 30s or 40s!) feel the same way unless they have personally experienced something really scary. I’m not sure I would have taken my own advice anyway but it would probably be to appreciate the people around you and the things in life that actually matter – and to make sure that you are living the life that you want, not the one that is expected of you.
More information about Shine’s impact and our history, staff and Trustees can be found on our website here. If you’d like to get in touch, please drop us a line at email@example.com.
“So, you’re fine now, right?”
Ah, the question that often gets asked when you tell people your cancer woes! And the thing is, it’s usually asked with the best of intentions. Your friends and acquaintances want you to be fine – but ‘fine’ can mean very different things once your body has been through cancer treatment.
In our latest blog, we are literally talking sh*t! Our writer, Pippa, shares her experiences of a bowel cancer diagnosis and treatment in her early 30s and explains what the ‘new normal’ can feel like once your insides have been through the wringer. Having trouble explaining to people what your life is like now? Please feel free to share with others and, as always, let us know what you think.
We live in a country where people are embarrassed to talk about their bodily functions, particularly their bowel movements. We rarely talk about them with our friends and family (you know you have a close friend if you do!) and we especially don’t like to talk about them with strangers, even doctors. This inability to talk about bowel movements is undoubtedly putting lives at risk and it almost cost me my life.
Bowel cancer is the third most common cancer in both women and men in the UK, and the second most common cause of cancer death in the UK, after lung cancer. Like many cancers, bowel cancer is more common in older people and screening is offered for those who are 60 or older. However, there are quite a few of us who are considerably younger who have been diagnosed with bowel cancer. As screening is only available to those who are older (and even then, it isn’t 100% reliable) you need to be aware of the symptoms of bowel cancer and talk to someone, like your GP, if you are experiencing them.
Before I was diagnosed, I experienced both a change in bowel habits and blood in my stools. These symptoms coincided with starting a new job and I put them down to stress. I was also embarrassed and didn’t want to talk to my doctor about it. I finally went to my GP fifteen months later. What finally convinced me to go? Confiding in my mum and one of my sisters. They were adamant I went to the doctor and it was actually much easier than I thought it would be to speak to my GP about poo! She referred me immediately for a colonoscopy, which is how my bowel cancer was discovered.
When you’re diagnosed with bowel cancer your life will forever revolve around poo, a subject that no-one wants to discuss! During treatment your bowels take a battering and a lot of people have a stoma (temporary or permanent) which brings its own poo challenges. I never imagined my life would involve waking up in the middle of the night and feeling a warm liquid all over my abdomen -and that liquid turning out to be poo from a stoma bag leak. Equally memorable was the occasion, soon after my operation, when I didn’t have a firm enough grip on my stoma bag as I was trying to empty it. Instead of emptying a very liquid poo into the toilet, it went all over the seat, my clothes and the floor – in fact, it went everywhere other than the toilet bowl. Happy times!
Being diagnosed with bowel cancer means you very quickly have to get over any qualms you might have had about talking about poo. Not only do you get used to crowds of people looking at or up your backside, but every appointment with consultants involves discussing your bowel movements.
Even once treatment is over, people rarely return to “normal” bowel function. The consultants like to refer to the period post-treatment as “getting used to your new normal”. For a lot of people, the final part of their treatment is having a temporary stoma reversed, which is when the bowel is reconnected for the first time post-treatment. A section of bowel will have been removed and the bowel that remains will have been affected by other treatments like chemo and radiotherapy. As a result, the speed at which poo moves through your bowel, as well as your bowel’s reaction to food and environmental stresses, will have changed. It is not uncommon post-surgery to spend a considerable amount of time on the toilet. Not only do you poo a lot, but it can also take a considerable time to fully empty your bowels. Challenges include feeling like you need to do a poo but not being able to, going to the loo, cleaning yourself up and then immediately needing to go again (referred to as clustering). No one understands the pure joy of passing a single normal poo until you have had bowel cancer!
These challenges are all a pain when you’re at home but they present even greater challenges when you’re out of the house. Prior to being diagnosed with cancer I tried to never do a poo outside of my own bathroom at home. Post-cancer, that is impossible. In the early stages post-treatment I didn’t like to be far from a toilet because if I needed to go, I had a very short period of time in which I could hold onto my bowel. Please don’t judge if you see a person who looks “perfectly normal” rushing into a disabled toilet. There are a number of medical conditions that mean that people need urgent access to a toilet and until you have experienced incontinence you can’t fully understand how embarrassing and horrible that is. If all other toilets are busy, the disabled toilets can be your only option to avoid an accident. Disabled toilets also provide more space to move around. When you have a stoma, you need that additional room to be able to empty your bag or to replace the bag if you’re unlucky enough to have a bag leak while you are out and about.
It can be very isolating to deal with the after effects of bowel cancer and the treatments. Thanks to Shine I have met a number of fellow “Bowelies” with whom I can have frank chats about poo and all of the other shit that comes with bowel cancer!
I am really passionate about educating people about the symptoms of bowel cancer and getting them talking about their bowel habits more. People can literally die from embarrassment and that’s not right.
Pippa Woodward-Smith is 34 and lives in Southampton. You can meet others like Pippa at our upcoming Shine Connect conference on 23rd April in London.
We often post articles on Twitter and Facebook about what to say to a friend or family member who has cancer, or how you might help them. We’ve also noticed that these often get a huge number of hits! That got us wondering how the members of our growing Shine community have been helped by family and friends when they’ve been ill – so we asked them! We got some great responses and we’ve summarised them below. Have a friend in need? Take a look below and see if we can inspire you!
1. Let them know you’re thinking of them
“One of my friends sent me a card every week that I was in the hospital – and I was in there for a long time. It was so nice to receive a surprise in the mail and to hear all her news. I’m not sure she knows how much it meant to me but I’ve kept all the cards as a reminder of what a great friend she is”.
When you’re ill, sometimes just knowing that you’re still part of the land of the living is all you need. A text, a card, a phone call – no matter how brief – can make a huge difference to someone who hasn’t been out and about much, especially if you’re clear that you don’t expect a reply. Being ill can be very lonely so knowing that your friends and family are still thinking of you can make a huge difference.
“A friend bought 12 homemade freezer meals at two separate points during chemo. Even though I didn’t feel like eating most of the time at least I knew there was something quick, easy and on hand for my husband and daughter. I was very touched at her kindness and effort”.
If you’re a whizz in the kitchen, there’s nothing quite like a homemade meal to perk up someone who isn’t feeling great. And even if they don’t feel like eating because treatment has done a number on their appetite, you might be easing their stress by making sure other members of their family have something quick and easy to eat when the hunger pangs hit.
Not big on cooking? How about cleaning? A lot of our Shine members mentioned that they’d had friends who had popped in to clean the bathroom and kitchen, or put fresh sheets on the bed (and do the laundry) while they flaked out in front of the tv. There’s nothing quite like clean sheets and a nice fresh towel – and it doesn’t take very long either!
4. Hang out
“For me, I was happy just to have people to keep me company. I think as a young lad people don’t know what to say and some people found it easier to avoid me. I was happiest when people just came round and played computer games or chatted, especially when I couldn’t do much else beyond letting them in!”
Your mate may not be up for a heavy night down the pub, but heading over to his or hers with a movie, a computer game or even a pack of cards can really boost someone’s spirits. Something that doesn’t require a lot of mental or physical energy – like hanging on the sofa – but keeps them involved in the world around them is often really appreciated.
5. Get them out and about
“I went to Glastonbury festival after my treatment and all my friends had to take it in turn to carry all my belongings and helping me hobble around. I felt guilty about ruining their fun, but in reality I genuinely felt they were happy to have me there. This reassurance was enough for me.”
We get it – being around really sick people can be scary. But helping a friend by taking them out, even if they’re going to need extra support, can help them feel like they’re still participating in all the things that they should be doing. Keep in mind that they might not be able to walk long distances or stay out late, but if you can pick them up and drive them to a restaurant, or help them carry their stuff without making them feel bad, you’re more than half way to making their day!
6. Entertain the kids
Let’s face it, kids can be exhausting at the best of times. If your friend has little ones, why not take them out for an afternoon or come over and cook them dinner while your friend has a nap? If they’re old enough, an afternoon movie or a trip to the park could give your friend a much needed break. Or invite your friend and the kids over. You entertain them while your friend chills out with a cup of tea!
7. Head to the hospital
Something that everyone with cancer knows is that it’s time consuming – and hospital appointments can take ages. If your friend is spending more time with the nurses and doctors than his/her mates, why not offer to keep them company? Ask if they’d like someone to take them to the hospital, pick them up, or hang out in between. Having someone to gossip to can be a great distraction from the blood tests, scans and doctor chats.
8. Walk their dog
Does your friend have a pooch? Why not ask if you can help walk the dog a few times a week? If your friend is happy for you to do it, see if you can get a few other friends together and organise a walking roster. On a good day, your friend might just want company for the walk. On a bad day they’ll be glad to have someone do the walking (and poo scooping!).
9. Organise a treat
“One of the most helpful things was planning something nice for my husband and I to do or go for a treat on the week before my next chemo. These did not cost much or sometimes nothing at all but it was something to focus on in the rotten days”.
“My friends always organised a get together on “chemo eve”, which was lovely.”
Cancer can be expensive! Not only are you missing work, but you’re spending your money heading to and from the hospital, on parking charges, and on extra blankets and heating to keep you warm. If you’re looking for a simple way to cheer someone up, why not plan a night out to the cinema or a comedy show? Book tickets when you know they’re free and either take them yourself or organise for others to go with them. (One minor note of caution: if you can, check if there’s cancer in the movie at all. You’d be surprised how many people in movies die of cancer. It’s not what you need when you’re going through treatment!).
10. Help them celebrate
Having the energy for Christmas, Easter or a birthday can be tough when you’re coping with a cancer diagnosis. Does your friend need help buying a tree or getting the decorations out? It can be hard for people to know what they need but asking specifically how their planning for a holiday is coming can open up whole new possibilities for help! Buy the Easter eggs, plan the hunt, decorate the tree, light the candles, buy the cake….the options are practically endless.
Got more ideas? What have we missed? Let us know! Comment below or Tweet us @shinecancersupp
Most of the blogs we feature are written by young adults who are living with cancer – but who cares for those who care for us? And what does it feel like? In our latest blog, Caroline writes about coping with her husband’s diagnosis and the ways she found to look after herself when everyone was relying on her. Shine has a small but growing “Plus Ones’ network. If you’re a partner, friend, parent or sibling of a young adult with cancer, why not join our growing Shine Plus Ones network? We run it via Facebook – just click on the link and request to join.
As always, we’d love to know what you think about this blog – and please share it with anyone you know who might be interested!
Cancer barged into our lives uninvited, ruthless and arrogant, and rapidly took the reins. Even before my husband was diagnosed, we knew something wasn’t right and our lives had already changed significantly – mostly in terms of anxiety. I would lay awake in the still of the night, hugging my nursing daughter close, terrified that I might soon be a single mum. Our life full of promise – in a new home, a new job, new friends and a new baby – was stopped in its tracks. The foundations of my life were suddenly very unstable and a new role as “carer” had been thrust upon me.
Cancer became our dictator
From the day we received the diagnosis – germ cell carcinoma, intermediate stage – the loss of control of our daily lives seemed to escalate. My life was no longer about running the home, toddler groups, changing nappies and days out as a family. It became about appointments, test results, clinics and chemo. As much as I tried to keep things “normal” for the kids, the inability to plan was overwhelming. Even mundane decisions that I previously took for granted were no longer within my control. I didn’t know from one day to the next where our family would need to be or who would look after the kids and for how long. The unpredictability of my husband’s symptoms challenged family life even on the days that weren’t disrupted by unscheduled or delayed hospital appointments.
Then, just as we were settled into a rhythm with chemo and had a “treat to cure” plan, my husband got very ill with a virus while he was neutropenic. We were back on high alert. This was a stark reminder of the fragility of our situation, the uncertainty of the future and my perceived powerlessness.
I was exhausted, emotionally drained, and my own health was beginning to unravel
Caught up in the adrenalin and anxiety of my husband’s health crisis, I neglected my own health, both physical and emotional, by repeatedly prioritising my family. I slowly realised that my health was just as important – after all, everyone was relying on me, plus it was one thing I could control. I chose to invest in myself and to proactively nourish and nurture my family. I researched and developed a “no-fad” cancer-patient friendly eating plan and set about caring for my family’s health.
As a biologist I am well aware that our bodies need a plethora of resources to function at their best. We need nourishment, rest and movement in unique and varying amounts, especially in sickness. Only when balance is achieved do we build the reserves we need to invest into others and/or support our body in recovering from illness.
Having been a carer with two young kids, I know how important my health is, but also how easy it is to put it at the bottom of the list, but once I adopted some simple strategies, my emotional and physical health – and that of my family -massively improved.
Staying in the moment
- Being still for 5 minutes each day. Simply breathe and be there. Accept all thoughts and feelings that come, embrace and experience them,–especially the hard, gut-wrenching ones, then release them. This is difficult, as we get so used to suppressing emotions and putting on a brave face, but this strategy stopped me misdirecting my anger, anxiety and frustration at unsuspecting and innocent parties. For example, I realised that when my son’s behaviour was uncharacteristically awful, it was actually a reflection of my anxiety, fear or stress. Acknowledging these emotions allowed us to enjoy each other and have fun.
- Connecting with my husband. It’s easy to slip into the role of carer and loose touch with your old relationship. Make time to love each other in the way that you used to; a partner, sister, brother, son or daughter. Love without pity, sympathy, anger or fear. Just be there with love and laughter. Remind yourselves of what you mean to one another.
- Being grateful every day. I used to get annoyed when people said this to me, were they expecting me to be grateful we had cancer? That’s not what I am saying. I am saying find the positives, even the little ones, each day. Is the sun shining? Did you find a parking space? Did you get good results? Were you able to share time together? Getting into the habit of thinking through the positives, event while you brush your teeth, can be a powerful thing!
Taking control of my health
In addition to the above, I also made a few changes to my diet and routine:
- I took Epsom salt baths 1-2 times a week. This was amazing for alleviating tension and encouraging a peaceful sleep – something that was very elusive!
- I cut back on caffeine and sugar. These are easy to over-dose on, especially during times of stress, but they ended up making me feel irritable and tired, which was less than ideal. I also stayed away from hospital vending machines and made sure to take healthy snacks – like fruit and raw nuts – to our appointments.
- I implemented a “no-fad” cancer-patient friendly diet. Taking charge of family health through food was really empowering. I found a way of eating that suited the whole family and was based largely around a mineral broth. It was easy to eat and highly nutritious food that worked well for a chemo-weary tummy!
After three rounds of BEP chemo and major abdominal surgery, my husband is now in remission. Life is slowly returning to a new kind of normal, and that’s ok. Cancer slowed us down and changed us, but it hasn’t broken us. There’s a lot of life to live and we are bouncing back!
The Great Escape is Shine’s flagship weekend for young adults with cancer. Every January we gather 22 people at the Grove Hotel in Bournemouth for a weekend of hanging out, information, walks – and usually some karaoke. This year’s Escape (our third!) was just as fabulous as our earlier two and we’re grateful to Robin Taylor who has written a blog about his experiences at the event. We’ll open registration for our 2017 Escape in October but you can learn more about it on our website, including videos from our previous weekends.
A Shiny Cloudy Escape
Just before Christmas 2014, I was diagnosed with Burkitt lymphoma, a form of blood cancer mostly seen in children and adolescents. I am 34 and was previously pretty healthy. I have since been through a rollercoaster ride of treatment and recovery and 12 months on I’m finally settling back into a routine. I joined Shine Cancer Support to meet people of my own age who have been through similar experiences and decided to apply for the Great Escape because it seemed like a great opportunity to network and meet others outside my usual social group.
I arrived at the Grove Hotel just before the Escape officially started. I’m naturally a little shy and it usually takes me a few moments to adjust to a new group. A group of people were leaving to get lunch and it suddenly dawned on me that, as I hadn’t been to a Shine event before, I might be the only person to not know anyone. However, I was greeted with a friendly smile by Laura, who signed me in and pointed me in the direction of my room. I dropped off my bags and decided to find the lay of the land. As I walked down the corridor, I met another “Escapee” who said that she didn’t know anyone either so we decided to find coffee.
I soon realised that most people had met for the first time that day and that I was less of an outsider than I had first thought. As we sat down for coffee, we were handed bags with name badges and some notepads, leaflets and goodies including chocolate. There were now a few of us sat chatting in the warm conservatory looking out onto the garden. A few minutes in, Emma bounced into the room and introduced herself, welcoming each with a hug. I think she spotted my British awkwardness and apologised saying “sorry, but that’s how I roll; you’ll get used to me,” I had been in the building for about fifteen minutes and already felt like part of the team. Emma was followed by Ceinwen who identified with me as a “chemo buddy” as we’d had the same treatment.
After coffee, we headed to the main meeting room. Emma and Ceinwen (whom Emma helpfully introduced as ‘Kine-When’) quickly built a great rapport and the presentation was informal and engaging. They talked through the schedule, some ground rules and explained that the weekend might be emotional. We were also introduced to the support staff including a (very much in demand) psychologist and an on call nurse. In talking to the ‘peer supporters’ (young adults who have had cancer and have been on previous Escapes) throughout the weekend, it was clear that they were all easy to talk to and had a wealth of knowledge to offer. The activities for the first day were designed to help us get to know each other. At dinner-time, the tables were chosen for us at random which worked really well as we all quickly met and, by the end of the second day, everyone knew each other.
I surprised myself at how quickly I had settled in – within 24 hours, strangers had become friends. By the end of the day inappropriate jokes and cancer-related anecdotes capped a raucous evening
Day 2 – Calm before the storm
Yoga (which was optional), a first for me, kick started my morning. As a runner, I could see the value of the stretches and the relaxation techniques. The session was designed to cater for all abilities and I could feel the benefit at breakfast.
The day started with a myth-busting discussion – it was interesting to see that I was not alone in my ‘common knowledge’ and ‘tabloid fact’ scepticism. We were introduced to some useful online resources with which we could help inform our opinions.
The afternoon was a fairly intense discussion about the emotional strain that a diagnosis can have on us. There were some really emotive discussions around how we managed our personal feelings and those around us who were also affected. Listening to some of the conversations found me holding back tears on a number of occasions.
We went out for dinner which was held at a fine high street pizza establishment – a welcome break from the walls of the hotel and good to catch up with people in a neutral environment.
Day 3 – A Sea Change
After my second yoga experience, we quickly settled into a discussion around relationships. We talked about how we communicated with friends, family and partners. On top of our varying diagnoses and prognoses, our family lives were just as varied but sharing the host of struggles that we could all identify with was a liberating experience.
The lads in the group were in the minority, but I had a number of really engaging, open and frank conversations. It seems that we all had handled ourselves in a very similar way and talking through our coping strategies was both cathartic and enlightening.
After lunch we broke into separate groups, and I was glad to see that I was not the only bloke in the fertility discussion. Though outnumbered, I felt comfortable talking about this difficult subject in front of the group, and the discussion was well guided by a highly experienced specialist nurse. As one of my fellow male companions said later “we learned a lot about how… er it works” (followed by a huge laugh from the group)
Apart from a few optional activities, there was a fairly generous break before dinner so I decided to go and hide. I didn’t even get round to switching the TV on or pick up my book as planned before the emotions started pouring out of me. To help me get through the next few hours, I decided to write a poem:
There’s a bottle within which all my tears go.
Emotion comes, I take one, stopper the jar, then stem the flow.
It’s difficult to know where and when or why they come.
The swelling fear, the hide and run.
Feelings don’t frighten me, I know they’re there.
I’ve just learned to close them down.
I don’t reflect, I look forward.
I don’t regret, I learn.
I’m trying to live,
My experiences don’t define me.
I learn from my experiences and define myself around them.
I’m still learning.
I’m trying to live,
if I don’t let them out,
the bottle might explode.
Before I knew it, it was time to head back for dinner which was followed by a pretty intense evening of karaoke. Audience participation was at a record breaking high, and some unexpected superstars arose from behind the curtain.
Hike and home
The event of the final day was the ‘Hengistbury Hike.’ We started with a talk from a fitness instructor whose specialism is working with cancer patients. As with all the speakers and contributors of the weekend, he was engaging and interesting – and even for a fitness convert like me, his approach was really interesting. The hike was well planned with different routes depending on ability and we spent most of the time chatting and taking in the beautiful scenery. The weather was exactly as expected (rainy and cold!), but refreshing and not too harsh on us. We returned for a de-briefing followed by a hugely emotional and huggy parting of our ways.
The journey home was a blur – I had the radio on but didn’t hear it. I think my mind was spinning from all I had learned and the wonderful people I had met. The comments in our private online group over the following days have been a testament to the bonds we formed, and I’m very grateful to everyone for having shared part of themselves with me.
I would have no hesitation in recommending the Escape to other people. On top of a range of practical advice, I learned that talking about how I feel is not only important for my own recovery, it will help those around me.
Robin Taylor blogs at http://www.robinbtaylor.com
As we dive deeper into 2016, we’ve noticed a lot of talk on our social media sites about anxiety. Is it normal to feel anxious after a cancer diagnosis? What about after treatment? To help you kick off the new year and get the best out of the next 12 months, we’re delighted that our longtime friend, supporter and all round Shiny person Emily Hodge (aka Coaching Emily) has written a blog about coping with anxiety after cancer. Take a read below, try out some of the techniques – and know that you’re not alone.
Having worked in both the NHS and health charities and then experiencing cancer myself, I have seen how prevalent anxiety is among the general population. It can be event more prevalent within the cancer community, given the uncertainty and the threat to life that a diagnosis brings.
In my coaching and therapy work with clients, we discuss and use a range of techniques that look at supporting ourselves with anxiety and moving forward in spite of it. They’re not ‘cures’ for anxiety but rather activities or routes to take depending on someone’s circumstances. Here are a few of the many.
Being aware of how you’re coping and what reactions you have to certain situations are a start to recognising anxiety. Often we get so used to a state of mind that we forget to assess it, but understanding our tolerance for it is important. We might think it’s normal to cry in the toilets at work once a week, or to feel anger and guilt all the time but it doesn’t have to be – this might be anxiety rearing it’s head and you might need support with it.
Talking about it
If you’ve recognised it and realise it’s not something you can cope with right now, please see your GP or another trusted person for guidance. Talking about it with someone you feel comfortable with might be the step that helps you next.
Slowing down and breathing
Before we can take any big action, we may need to catch ourselves and slow down. Stopping, breathing and slowing our racing thoughts can be the first thing we choose to do when we recognise something uncomfortable. We might want to run (the so-called fight or flight response) but if we can stop rather than rush around, it can be the beginning of a different relationship with our thoughts and feelings.
One quick technique to try is the “5-5-5” breathing technique:
- Stand up with both feet stable on the floor
- Look forward with eyes into the distance or closed and hands by your sides
- Take a deep breath in for 5 seconds
- Hold this breath for 5 seconds
- Exhale for 5 seconds
- Repeat this 10 times (or as long as you feel comfortable) and then check out how you’re doing
Recognising when we last felt less anxious
When we’re in a calmer state (maybe after the breathing or perhaps completely separately), take a moment to think about the times when your anxiety is less present. What are these situations, what time of day do they occur, what happened just before and just after? These indicate times that you feel different, bringing in an awareness of how your mood changes and can help you to recognise that you don’t feel the same way all the time.
Recognising how you’re feeling is important with anxiety because it can trick us into thinking that we’re always like this, and it never changes. If we’re able to see that it does indeed change over time, then we can start to understand our triggers and think about how we could respond differently in the future.
Working out what you love
Similar to the above, spend some time thinking about what you love. What is it that makes you lose track of time, the thing that helps you forget yourself, the activities or places that you simply love? How possible is it to go to or get more of these in your life? If it doesn’t feel very possible, what might need to be moved or changed to make it more possible? What does even just thinking of this activity do for you?
People can get evangelical about being around nature but there’s a reason for it! Evidence shows that being around and able to see green aids feelings of calm. Find the bush at the end of your street if there’s no park to go to – what is it doing? How does it smell, look, feel? It’s a small, small thing but have a go and see what happens.
Equally, go outside and look up – what do you see, hear, smell, and feel? When did you last look up outside?
Finally – walking (however you enjoy it – on your own, with friends or family, a dog, a podcast, music) is a great way to move us into a different state.
More formal support can come in many forms – there are talking therapies such as counselling and Cognitive Behavioural Therapy (CBT) which may be available through your local NHS, other therapies such as mindfulness, or body work like acupuncture, the Emotional Freedom Technique, massage, or Reiki. We’re all different and knowing what suits us is important, but you don’t have to do it alone. If you need help to find the right support, try talking with a friend, asking a therapist for a free 20-minute phone consultation, or making a GP appointment.
Many people might think of anti-anxiety drugs or anti-depressants as a last resort, but they can be a brilliant way to help with the change in chemistry that is going on in the body, particularly following chemotherapy, radiotherapy or surgeries. Medication may not be for everyone, but for others it might be just the route to be able to access other support in the first place.
Finally we might feel pressure to ‘solve’ our anxiety because there are so many apparent routes to doing so. But it can be important that we first understand what it is we are dealing with, and how we’re coping before we’re ready to do anything about it. Give yourself a pat on the back for reading this and look at it again when you’re ready.
Emily is a health psychology specialist who worked in the NHS before her own cancer diagnosis. She now runs private one-to-one, group coaching and therapy to support people during and after challenging times in their lives. She’s worked with Shine for over five years and regularly sees cancer clients. Check out her anxiety vlog and website here www.coachingemily.com