When I was first diagnosed I felt really isolated, scared and alone – and found a great deal of solace and support on the Breast Cancer Care Forum and a couple of Facebook groups. I soon had a group of virtual friends who all started chemo at the same time as me. We were all going through the same thing and understood what each other were going through. We could be totally open and honest with each other and supported one another, offering help and advice where we could. We could talk about everything from the embarrassing side effects to the more morbid side of dealing with a life-threatening illness – which non-cancer people just feel a bit awkward discussing. We also got lots of tips and advice from ladies who had finished treatment, which was much more relevant and useful than the info given to me by my nurses and specialists – as they’d actually experienced it. Predominantly this has been a source of amazing support and information, made me feel less alone and I’ve also met up with some of them in “real life” and made some great friends.
HOWEVER, I also think it’s important to warn you that while you will get support, questions answered, and relevant information, you will also be exposed to a rather warped view of all things “C”. The majority of people on the forums are people who are struggling to cope – emotionally or physically – and, as such, you are exposed to lots of negative stories. Those who are healthy and well and coping brilliantly are all off happily living their lives! Not logging onto cancer support forums. It’s therefore really easy to get drawn into a world which makes it all seem much, much worse than the reality – all too easy to believe that you will suffer every single awful side effect mentioned and there are constant reminders of the worst outcome when reading posts written by Stage VI ladies and announcements of members passing away. It also gets pretty addictive and difficult to ignore as every time you log onto Facebook to catch up with your real-life buddies, there are notifications of various cancer-related posts which just brings it all to the forefront of your mind again, rather than it settling down nicely at the back of your mind if you’re having a happy, cancer-free day. However, once you’ve been part of the group for a while, it is very difficult to sever links as some members become proper friends – and you grow to genuinely care about them and want to continue to keep in touch to hear how they’re doing and to give support and advice whenever you can. Plus you never know whether you are going to need the support network again for yourself. The really, REALLY difficult bit is when your online friends start getting bad news. I’ve lost a few of my virtual friends who were having treatment at the same time as me – and a number of others have been told that the cancer is now terminal. This is doubly hard to deal with as not only are you terribly sad that a wonderful person has passed away and sad for their families whom you also feel you know as you have heard so much about them – but you can’t help but be reminded of your own mortality as it’s a stark reminder that it can come back and strike at anytime.
Sooooo….I wont discourage anyone from using the forums as they were a godsend for me – but I just wanted to warn of the negatives. There are some positive forces on the forums – and I strive to be one of them which is one of the reasons for writing this blog. I got to the point where I was repeating myself all the time, and I also don’t have as much time to spend on the forums, so I thought if I wrote it all in a blog, I could just direct people to the relevant part. But, to illustrate the potential dangers, I have come across some women who have refused certain treatments – like Tamoxifen – because they work themselves up into a state by reading scary stories online. The reality is that MOST women are fine with very few side effects, if any. This is life-saving treatment people! Much more sensible to give it a go and see how you get on with it. And arguably easier to do so without knowing the extreme side effects that can be experienced – albeit by the minority. I’m sure if you’d seen someone have a severe reaction to paracetamol if would make you think twice about popping a couple of tablets for a headache if you’d never taken them before. Embrace online forums if they work for you…but just keep a balanced view and remember that you’re not seeing the full picture.
Chemo For Beginners - an A to Z of all things "C" 
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