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.

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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.

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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. 

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

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

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

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

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Some of the ways our Plus Ones deal with stress

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

Real Life Guides – Living with uncertainty after a cancer diagnosis

We are working on a series of guides that will cover some of the key issues faced by younger adults living with cancer.
As you will know, a lot of these issues do not have one ‘right answer’ so we would love to use your insights, experiences and ideas to make sure they really reflect reality.
Covering topics such as returning to work after a cancer diagnosis, living with uncertainty and dating after a cancer diagnosis, we know that there is a real need for people to be able to access information as well as different views and experiences to help them live the best life they can.
It would be great if you could spare a few minutes to add your thoughts and experiences into each topic as we write the guides.
You can either email Emma for a full list of topics and then email her again in confidence or you can share your comments directly on this blog…
This month’s topic is ‘living with uncertainty’ and we have got you started with comments from our recent workshop.

Please help us make these guides a really honest and helpful piece of work.

Thank you!

RLF LWU

Living With Uncertainty

In our survey of people diagnosed with cancer who are in their 20s, 30s and 40s 85% of people said that they had lost a sense of security in their future, 93% of people think that cancer will always be part of their lives.

Whilst we cannot remove the uncertainty that a cancer diagnosis brings, we hope that by sharing what others think we may be able to reduce the feelings of isolation that this uncertainty can bring with it.

We would love you to write in the comments below (or email emma@shinecancersupport.co.uk) what you think causes the feelings of uncertainty and how you have learned to deal with these (or what you have tried that hasn’t worked)

We will write up your comments into our new real life guide which will be published on our website and printed for distribution where we hope they can help others going through similar experiences.

There will be a new topic each month so please come back regularly to help with all of the guides!

To get you started – here is what people were saying at our recent workshop…. Do you agree? Or do you have a different opinion?

What are people uncertain about?

Will I cope and will my family cope?

Will I need more treatment?

How will I get through treatment? Fear of the unknown

Will I be able to go back to work?

Will by job still be there for me?

Can I plan anything? ever again?

Should I change my lifestyle?

Can I pay my mortgage?

Can I book a holiday? What about insurance?

And advice?

Plans can be made and plans can be changed!

Try and focus on what you do do and not what you can’t/haven’t done

Be kind to yourself

Guilt is a wasted emotion

Allow yourself to have a bad day occasionally!

So what do you think? and what do you suggest? Did these issues bother you and what did you try to combat them?

Thank you for your help!

Telling it like it is…

One of our Trustees, Ceinwen, gave a talk to NHS human resource managers at the NHS Employers workforce leaders summit on 14 November in London. It was a small event with about 28 participants. Ceinwen told parts of her “cancer story”, focusing on the positives and negatives of her interactions with staff during her six month hospital stay in 2010. She spoke with a focus on giving the views of a younger person with cancer.

Ceinwen says “What was interesting about the day was that many of the managers know there are problems with staff behaviour and that this impacts negatively on patient experience – but no one really seems to know how to tackle the issue”. One of the most interesting topics discussed was whether senior clinical staff need more psychological help to deal with the stresses that come with treating critically ill patients. Maybe those hard-nosed consultants just need a shoulder to cry on? Food for thought!

http://www.nhsemployers.org/Aboutus/Events/Pages/WS-sessions-1.aspx

Life interrupted – A workshop!

Ceinwen & Emma both attended this years Macmillan Cancer Voices conference on the 12th & 13th October. This conference is for volunteers affected by cancer either as a patient or a carer who are active in Macmillans cancer voice programme.

Shine hosted a workshop at the event entitled ‘Life interrupted, dealing with cancer in your 20s, 30s & 40s’

 The workshop was oversubscribed and was rated a great success by the people who did get to attend.

The main output from the workshop is a great start to the style and content of Shines new series of online guides to the common issues faced by young adults cancer patients

Part of our plans for Shine and the small c project is to produce a series of ‘real life guides’ to some of the common issues faced by people dealing with cancer at this age.

From our online survey and our workshops, we have established a list of common topics that people need help with that are either not addressed at all during treatment or are not managed in an age-specific way.

Topics such as dating after cancer or returning to work are areas where there are no ‘one size fits all’ solutions but we believe that these

 guides, written by people that have been there, will help to reduce the isolation and give people positive ways to cope or specific helpful hints and tips to help them deal with these issues.

As we write the guides we will need your input! Get in touch if you feel you have something to contribute or look out for our email requests for help….