Chapter 11: Using social media for good

The last couple of weeks I have been throwing myself into seeking out support groups and charities, and finding other young women with cancer, mainly because I’m so damn bored. I am waiting for my blood counts to recover (once again) so that I can be admitted back into hospital for my last chemo cycle (love saying that). Being ill, but not feeling ill, is one of the weirdest parts of this. Right now, I feel relatively ‘normal’. I’m currently day 29 post-chemo, so all of the side effects from the last cycle have ebbed away and I don’t really feel unwell at this point other than feeling tired (all the time; it really doesn’t go away), so having all this time on my hands is just dull as dishwater. I mean I know I’m supposed to be giving my body time to heal and taking it easy, but there’s only a certain number of hours a day that you can watch Netflix without losing your mind…

So, as I was saying, these past few weeks I have never appreciated social media more. People complain a LOT about it and it can be used in the wrong way, yes, but in particular, Instagram has honestly made such a difference to my life recently, which is something I never thought I would say. A simple search either for users or for hashtags can put you in touch with hundreds of others who know exactly how you feel and exactly what you’re going through, and having other wonderful people with cancer on my timeline showing their lives just like I do just makes the whole thing feel so much more normal. Private Facebook groups such as Cancer Chicks created by the blooming lovely Olivia (@oliviarosesmithx @cancer.chicks on Instagram) are a safe place to bitch or complain or ask a question, or even just have a laugh at something silly chemo brain has made you do. So here is my guide to finding support on the internet and social media.

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1. Instagram – Broad hashtags like #cancer or #girlswithcancer will bring up millions of results so I’d suggest going with something a bit more specific. Search for your type of cancer, be as specific as you like. I have searched for #lymphoma as well as #nonhodgkinslymphoma and even as specific as #diffuselargebcell. It’s a great way of discovering others that may be going through the same treatment as you. Sometimes you can find accounts devoted to featuring others with cancer, this can also be a good way to seek out people. In particular, some of my favourite accounts are @cancer.chicks @shinecancersupport @cancerqueens and @bebodybrave.

2. Charities – There are lots of charities out there that are very broad-scale and cover all the types of cancer, for example, Cancer Research UK, Stand Up 2 Cancer and Macmillan are 3 of the big guns. Then there are charities that deal with your type of cancer, so for me, with Lymphoma, there is Lymphoma Action, Bloodwise and Lymphoma Out Loud, to name a few. There are also lots of charities that target young adults with cancer such as Shine Cancer Support and YouCan Youth Cancer Support. Seek out these charities either in person or via their website and have a good look around. Some of them have sections devoted to those that have a friend or loved one with cancer. Lots of them have support groups and forums you can join; they might offer meet-ups or retreats or workshops; they may offer financial support or help with things like travel insurance and there could be private groups you could join which leads me onto my next point;

3. Facebook – Similar to Instagram it’s really about what you are looking for. You can often find links from charities’ websites to private Facebook groups that you can join, or you can do a search on Facebook itself. There are hundreds of groups, groups that are for cancer in general, groups that are for your type of cancer, or young people with cancer. Groups for geographical areas or treatment types. Get on there and search. Some of my favourites are Cancer Chicks for young women with cancer and Shine Young Adult Cancer Support. They are places you can ask for advice, find others local to you or even just moan about something to people who understand.

4. Podcasts – Recently there has been a boom in the popularity of podcasts which is great! Hearing someone talk about cancer or life with cancer so candidly and unafraid can be so cathartic. Often friends and family can be a bit freaked out about saying “the C word” out loud (I tell them “it’s not like Voldemort, you can say it”) and if we want to remove the stigma it should be talked about without fear or hesitation. You, Me and the Big C is a radio 5 podcast that has gained particular notoriety, and for good reason. In their words, “The coolest club you never want to be a part of… The women of the You, Me & the Big C Podcast are your BFF’s, your sisters, daughters and mothers. They are you…but with dodgier cells and they’re tooΒ busy living to worry about dying.” Another great podcast I have come across is Not Your Grandma’s Cancer Show, but it’s really about preference and what you want to listen to.Β 

You might feel like you have enough support from your friends and family, which is fabulous if you do, but sometimes you just want to talk to someone who knows what it’s like in every way; someone who’s current version of ‘normal’ matches yours.

 

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