On being a Plus One

On 9 March we ran our second ever Shine Plus Ones workshop in London. We were joined by the partners, siblings and parents of young adults who are living with cancer. It was a great day that covered some tough subjects but we left feeling like we’d spent the day in the company of nice people (always a bonus if you’re going to spend your Saturday talking about cancer!). We are also really grateful that one of our Plus Ones, Chris, wrote a blog about the day so that we didn’t have to! Whether you’re a Plus One or not, take a read – it’s so important that, in addition to the person with cancer, that those around them get the right support too.


Hello, my name is Chris and I’m a Plus One.

Chris and Kirsty

Chris and his fiancee, Kirsty

Three months ago my 32-year old fiancée was diagnosed with cancer. An adenocarcinoma of the submandibular gland – salivary gland cancer. She’s had surgery, healing, radiotherapy and now more healing, with plenty of tears, pain and mucus involved. Mentally she’s doing pretty bloody well considering. It’s a rollercoaster, as well you’ll likely know if you’re reading this.

For me, my fiancée’s diagnosis came off the back of my mum finding out that she had Non-Hodgkin’s Lymphoma 11 years ago, at the age of 51. A few months later, her 53-year old brother was diagnosed with bone cancer and died within months.

Anyway, what I’m getting at, is that it’s been tough, right? I was 22 when my mum was diagnosed and that was scary. Now I’m 33, and man, I’ve just got onto a much bigger rollercoaster.

Support

The last few months have been tough. There’s been support – some fantastic NHS surgeons, registrars, consultants, nurses, radiographers, receptionists, dietitians, speech therapists, and physios. And we’ve been lucky to have access to some brilliant Macmillan nurses, coordinators and counsellors. But the one thing we’ve been missing? Young people. Friends our age don’t always get what we’re going through, and frankly why should they?

It’s tough waiting for appointments in rooms of 30 people, all looking at least 30, 40, even 50 years older than us. Of course it’s sh*t for them too – no one should have to go through this, no matter what age. But there are differences when going through this at our age, and that’s where Shine comes in.

Shine Plus One

We found Shine after some helpful recommendations. We joined some online groups and pencilled in a few diary dates – for me, it was the Shine’s Plus One Workshop, for my fiancée, some meet-ups, and for both of us, Shine’s Connect conference in May.

IMG_2892

At the workshop with Salma, one of the Plus Ones volunteers

A few weeks passed and I was on a morning train up to London, with my fiancée resting at home with morphine, Breaking Bad and her sister to help out.

Arriving at Somerset House I was welcomed with loud hellos, broad smiles and hot tea – a pretty good start! There were a dozen or so of us there, mostly new to Plus Ones and understandably a little nervous.

We settle in with Emma (one of the co-founders, and an excellent facilitator of what is a tough crowd, let’s be honest!). She laid out the plan for the day and put us at ease. Emma gave a little context and talks about what the charity does. Short answer: some bloody great work (though you can find out more details here). One thing that’s evident is the many friendships formed through Shine’s activities. It becomes clear that these friendships are genuine and numerous the more the day goes on, with references to funny stories of people in the room or those they support, and photos from events full of hugs and smiles.

Morning half

An icebreaker is there to break any tension and put people at ease, and without giving anything away, Emma did a great job. We were introduced to each other, to our situations and to what we were looking to get from the day. There were some tears, naturally (myself included), but there were plenty of laughs there too.

The conversation turned to talking about support from friends and family, and how so many people get it so wrong or do so little. There were lovely stories as well though – people happily being pointed in the direction of a cooker, cleaning products or a lawn mower. We ended feeling significantly better equipped to request help from those who offer it.

We had a great first few discussions but stomachs were rumbling, so we went off to lunch. There was mingling and conversation over a generous amount of sandwiches, salads and snacks (the remainder of which is later donated to two nearby homeless gentlemen). We referenced the great experiences of the NHS, and the not so great ones. And we all agreed that if you want anything done then quiet compliance just isn’t going to cut it!

Afternoon half

Coming back from lunch I paused to consider how well it’s going – I already felt more supported, more understood, less alone.

Kathy (a kind counsellor who works with families and patients in hospitals) facilitated a discussion around themes of loss. We broke off into groups and the expected came up – certainty, spontaneity, plans, time, but also some of those things that feel unique to those of our age that are facing this – loss of future family and career.

The topics were fed back to the group and then we discussed coping techniques, and even some of the gains you can get through this process – strength in your relationships and worrying less about the little things, nicely named by one of the participants as ‘give-a-f**k-ability’!

We then moved to talking about coping with worry. We talked about how you can feel knackered from being constantly tense, and waiting for more bad news. We talked about techniques to help with worry – writing worries down, drilling in and fully understanding them, or even dedicating some worry time in the day, leaving you free elsewhere.

IMG_2898

Ways that the Shine Plus Ones cope with worry and stress

As it was nearing the end of the workshop now, Emma slowed things down a little and gave us some time for ourselves with a relaxing eight minute mindfulness exercise. We slowly came around and drifted over to the bar, conveniently located in the room across from us.

Pub half (yes that’s three halves!)

The chats continued and moved seamlessly between how we’re coping and the everyday. We learned a little more about each other – walks were organised and details exchanged. We were just another group of people chatting in the pub, not defined by what we’re going through. Not defined by cancer.

And process!

I reflected on the day during my journey back to down to Brighton. I’m amazed at how much impact it had, how quickly I felt connected with the group, how much we laughed, how much we understood each other, how similar our experiences have been.

It wasn’t forced, it wasn’t awkward, it wasn’t a barrage of sadness. It felt normal, useful, fantastic.

I was left thinking “how can I help”? Help fundraise for a excellent charity, help others access what I got, help others understand the benefits. I’m starting with this blog.

If you’d like to get in touch with other Plus Ones, you can request to join our Shine Plus Ones Facebook group (make sure to answer the questions!). You can also drop Salma (a Plus One herself) a line at plusone@shinecancersupport.org to find out about meet ups and events. 

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.


 

pexels-photo-297817.jpeg

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.

Workshop photo 1

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.

 

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

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

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

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

Plus Ones 2

Some of the ways our Plus Ones deal with stress

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

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

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

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

Introducing Shine Plus One!

Shine is working to create a community for young adults with cancer in the UK and with 11 networks across England and Wales, we are getting there!  But what about the people who support young adults with cancer? The family, friends and partners who support us, worry about us and take care of us?

As Shine has grown, we’ve met more and more partners, friends and family and learned about the struggles and worries that they face when helping us to cope with cancer.  And so (drumroll please!!!) we are excited to announce the creation of Shine Plus One!

Shine Plus One has a closed Facebook group where anyone who is supporting an adult in their 20s, 30s or 40s with cancer can go to chat, complain, offload or lend support – as it’s a closed group, no one will see what you write and your comments won’t appear publicly on your timeline.  We’ve also started a London Plus One network that will be meeting up regularly.

In this weeks’s blog, Salma and Peter (both of whom have partners who are living with cancer) share their stories and explain how Shine Plus Ones came about. Take a read, join the online group and, if you can, come out for a drink!  To get in touch with our London Plus One, you can email Salma and Peter at londonplus1@shinecancersupport.org.


Peter

Peter’s story:

Let me be frank: being the partner of someone with cancer is tough – but in my experience it’s never quite as simple as that. Clare and I had a pretty tempestuous relationship in the years leading up to her diagnosis.  Although the “Big C” certainly stopped us both in our tracks, we had existing problems with our relationship that had been left unresolved. In our case, the issues revolved around a lack of effective and loving communication, as well as all the common stuff that being a first time parent brings up – the new family dynamic and the differences in the ways we wanted to bring up our toddler. Just because Clare suddenly had cancer, the existing tensions didn’t go away – the biggest issue on our plates had just dwarfed them.

Equally as suddenly, we were forced into roles that were completely foreign to us. My beautiful, sexy, strong-willed and outspoken wife suddenly became ill. I was a jobbing actor, only just beginning to realise after the birth of my son that I wasn’t the most important thing in my life anymore. Everyone suddenly expected me to take on the role of ‘carer’. I was supposed to be supportive in every way and humble to the core. I rebelled for a long while, as I simply didn’t want to accept what was happening to both of us.

I remember coming out with stock phrases that I could say while remaining completely emotionally disconnected: “Yeah its not easy, but compared to what Clare must be going through, I’ve got it easy” or “No one expects to be hit by the brick wall of mortality at 31 – I just can’t imagine how she must feel”. The fact was though that I didn’t really know what to say to people who asked how things were going. It was too huge to actually deal with. When people asked how she was, how I was, I often just wished they hadn’t bothered, as there was nothing that anyone could say that would make the situation better. My biggest challenge at the time was accepting our circumstances. Quite simply, we were both trying to come to terms with a very unpredictable future that neither of us had ever imagined.

The idea of being able to connect with other people seemed impossible as there was no one who really knew what we were going through. There were plenty of people who said “call me if there’s anything I can do” but we both knew there was really nothing they could do. Perhaps I didn’t really want to connect with anyone at the time. Usually very outgoing and social, I found that my default coping mechanism was to internalise and disconnect from others. I found myself crying down the phone to a Macmillan volunteer one time, but that was about it. There’s never really been anyone I knew of who was our age and who had gone through what we were going through – until now and thanks to the creation of Shine Plus One’.

SalmaSalma’s story:

2009 was supposed to be great. After years of struggling in vain we were finally pregnant with our first child. Life was wonderful. Then one phone call brought us down from the top of the world and my husband Rich was told he had hairy cell leukaemia. I imagine everyone remembers the moment they find out. We certainly will never forget: it was the day before our baby’s 20 week scan.

The scan is still a bit of a haze for me. We were very happy to see that our child was healthy and growing well but as we sat there Rich feared that he would never see his daughter born, and I was utterly terrified at the thought of being a single parent without my husband at my side. It was all hideously wrong.

Following his diagnosis Rich had to stay away from people to reduce his risk of infection – even catching even a cold could have killed him.  Fortunately he could work from home, but with me about to go on maternity leave, it was a scary time not knowing if we would manage financially.  It was a lonely time for both of us as well. The winter of 2009 /10 was a harsh one and most of the people we knew had a virus at some point so they couldn’t visit.  As a hormonal, emotional pregnant woman my mind went to horrible places as I watched my husband get thinner and sicker, but if I wasn’t positive and strong who would be?  I kept it all in.

After his chemo Rich caught an infection and was put into an isolation room in hospital. He was there for most of the final two months of my pregnancy and this was a dark time.  I watched him shrink physically and saw how the isolation drained every ounce of enthusiasm from him. Each day I walked in the snow to the hospital and sat with him. I left each night when he fell asleep.

As the one without cancer it was almost impossible to shout “what about me?” but I found myself in a lonely place. I have many wonderful friends and family nearby who looked out for me and who phoned regularly, but people have their own lives, and none of them truly understood what it was like to be me.

Shine Plus One

Shine has been invaluable to our partners Richard and Clare and has provided support and an understanding community (you can read Richard’s story here).  When we met at Shine London’s Summer Picnic in July of this year, we bonded over the idea of starting a “Plus One” group that could provide the same sort of support but for partners, friends or family.

We want to offer a friendly ear and support to those out there who, like us, feel they might benefit from chatting about the real issues that having a partner or family member/close friend with cancer brings up. We want to provide a platform for people to sound off about anything without feeling judged. We want you to know that you are not alone in thinking or feeling the way that you do!

You can get in touch with us on Facebook (just request to join the group) or, if you’re in London, drop us a line at londonplus1@shinecancersupport.org