I’m sure you’ve all heard the adverts, seen the slogans, 'No one should face cancer alone.' I wholeheartedly agree, but many do. Cancer can powerfully isolate you from others, be it the fear the name instills or fear of the unknown, some friends can disappear sooner than you can finish the sentence. Add to this the unpleasant side effects of treatment and no energy and suddenly if you’ve chosen to live in a more remote area people aren’t popping by or you can’t manage to visit friends without feeling wiped out. Let’s not forget the financial impact of not working whilst receiving treatment. While this isn’t everyone’s experience, it is the reality faced by many.
Being diagnosed with cancer can be like a thunderbolt and you are left reeling wondering where to turn for help, advice or support. For me, I wanted to know someone else felt like I did, I couldn’t be the only one surely? Peer support is a wonderful way to feel supported and have a sense of belonging. We joke that we became members of a club that you really didn’t want to join.
So what is peer support? The term is used readily in many sectors, especially in cancer services or chronic illnesses. I thought it would be useful to share the definition, just to make sure we are on the right track.
‘Peer support is a system of giving and receiving help founded on key principles of respect, shared responsibility, and mutual agreement of what is helpful.’
There are so many ways that people affected by cancer can benefit from peer support. In my own personal experience I dabbled with a few methods, perhaps I’m just greedy or like variety.
The following is a list, and apologies if I've overlooked any of the methods of peer support I found available.
Online Community Forums - Large cancer charities like Macmillan have a Community Forum with separate groups for different cancers, different stages, and different roles. There is a place for everyone to fit into and if there isn’t you can set up your own group and relatively quickly you will attract others. I found Macmillan within hours of being diagnosed, I think perhaps the large brand name reassured me that I would find others in my position. I wanted someone to say what I was feeling was normal.
I’ve found lots of online forums work well, they are moderated and there are rules to ensure no offensive remarks, images or private details are shared. Perhaps the beauty of these groups are you can be as anonymous as you want, real names are banned, so you quickly become your alias, pet names are common here and witty cancer slaying names. This is a great start when you trying to find your way around a diagnosis, a place to voice fears that you don’t want to say out loud to anyone you know, or in person. You give and take as much as you see fit, some people never actively reply to threads, but read and gain from the posts others make. There is always someone or something you identify with.
Specific cancer charities have their own forums and communities, lots of my peers used Breast Cancer Care alongside Macmillan – I couldn’t manage to juggle to different groups at this time of my life, but for many that really helped and they made great lasting friendships. There is a huge range of large and small charities offering online forums as peer support.
Closed Facebook Groups - usually connected to a public page, these behind the scene groups function by invite only. They are a fantastic way to share and give tips to others, and find answers to those nagging thoughts at 3am. Less anonymous than the stricter forums, you can share images, your real name, location etc. I consider these a step on from the other forums, when perhaps you’ve had a bit of time to come to terms with your diagnosis, or family member’s diagnosis. People in Facebook groups can also become friends outside of the group with some groups arranging meet ups. Some of the main benefits of closed groups or forums, they are 24 hours a day, 365 days of a year. Admins keep a watchful eye, but I’ve actually found closed Facebook groups friendlier than larger forums, which can on occasion have high tensions and opposing beliefs, perhaps as people can hide their real identity they can be a little nastier. Additionally some people sadly aren’t who they say there are sometimes.
In our early days before the development of Annabel’s Angels we developed a closed Facebook group, after moving across from Macmillan.
Skype - some charities offer peer support via Skype – Isn’t it wonderful? You can have conversations with people anywhere in the world and maybe never meet them in person. Skype connects us and is great way to break isolation if you live in remote areas, provided you have great internet access. Obviously if you are introduced to a someone via a charity they have gone through a screening and training process and most likely been through treatment for cancer themselves, so have their experience to share with you.
Google Hangouts - the step up from Skype, an online get together for small groups. Google and Skype can be used on mobiles too, so no excuse for feeling lonely in a hospital bed anymore, you can hang out with your buddies online and boost your endorphins.
Email one to one support - some cancer charities will match you with a buddy and you communicate by email. Whilst some younger people will roll their eyes at this, with What's App, Snapchat and other new apps an email is often seen as slow. But isn’t restricted to certain characters like Twitter, so a modern version of pen pals is a great idea for some.
Twitter - of course, and we now can now send unlimited text in DM (direct messages). It’s a great way to connect to others that are going through something similar to you. In my personal experience, and maybe this is because I’m a little older than 30, ahem, I’ve met Twitter pals post treatment and mostly as we are all either professionally linked, campaigning or cancer activists one way or another. There’s some thriving connections tweeting away and then meeting in person.
Blogs - of course. Who doesn’t find blogging cathartic, and you have the option to keep yours private or public. I had two, my public Macmillan blog and a private Word Press account, using it as an online diary of how I felt. When first diagnosed I found other blogs written by young women who had been diagnosed with breast cancer. They inspired me and gave me hope as they honestly shared fears, photos, advice, fashion tips and brow advice. People follow and interact with one another via blogging, again there is someone or something for everyone.
And now …step away from the computer and join the real world…..
Peer Support Groups - depending on where you live these can vary greatly. There are groups for specific cancers again, age groups, stages of disease, newly diagnosed, post treatment, secondary groups, carers only groups, young carers groups……it’s endless. The format varies too, some successful groups have structure and healthy snacks. Some less formal with your statutory tea and biscuits and rolling responsive agenda.
Some led by patients, others by professionals. You can pick and choose, some groups will make you feel very welcome and you naturally bond. Others are a little tricky, my worst experience was where people played what I fondly refer to as Cancer Top Trumps, my illness is worse than yours. Why?
Groups have lots of benefits, physically being with others can be great and lead to making some fantastic friends, and I can vouch for this too. They can also be a bit stagnant sometimes when dominant group members are reluctant to share and talk over new members. It happens, we all have varying needs after all.
I remember not long after being diagnosed wanting to see people that were 'back to normal' after treatment and it seemed they didn’t exist, they were an urban myth. Of course the truth was they were back at work and not able or wanting to attend groups that reminded them of their treatment. I can vouch for this too, returning to work with my skin still cooking from radiotherapy I wanted to put my experience behind me.
Action Groups - Walking, Dragon Boat Racing, Singing or Dancing etc - what a great way to meet others in a similar position to you then doing something you enjoy. There are some brilliant examples of this Wave Walkers, is London’s first Dragon Boat Team for people affected by cancer. Choirs are springing up. There are dances and walking groups too. The way they are advertised greatly varies, sometimes a random online search won’t find them. I found Wave Walkers as they’d distributed fliers in oncology waiting rooms. Alternatively Meet Up is a good place to look for groups.
Cancer Buddies - when people who have had a lived experience, certain charities offer opportunities for people to volunteer as buddies to support newly diagnosed or perhaps isolated people. This has plenty of benefits too, and perhaps suits people not fond of groups but seeking to meet someone in public for a coffee. Some smaller charities offer this as a befriending role, they have restrictions that volunteers have to have had a significant period since they were undergoing treatment or their family members were so that they are not emotionally raw and unable to fulfill the role.
When we formed Annabel's Angels, our aim was to encourage friendships throughout cancer, as we had become friends ourselves. As a natural extrovert, I could talk the hind legs of a donkey and never have a problem initiating conversations with others, but for so many it’s very difficult starting conversations with other people even if you are desperate to do so. Peer support in all its wonderful forms can be your starting point as with a click of a button you can be connected. I hope that anyone reading this feels inspired to go straight to the search bar and look for local or national options that can support you, or the person you care for. There really is no reason to be alone.