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I hope this website will offer you a number of coping strategies.
Sufferers is not a word I would generally want to associate with those of us who cope daily with a range of debilitating effects. It doesn’t seem very empowering, even though we do suffer. However, if I use a phrase such as "sufferers as experts", I hope that feels different. The button called Have Your Say on this website, is precisely so that people can share their ways of coping day by day. I hope your experiences/ideas will help, not only those of us coping with fear of cancer recurrence and progression, to name just one long term effect of cancer, but also offer support to others with lots of the other issues that arise when living beyond or with a still present cancer.
I also hope those supporting us, namely healthcare professionals plus family friends, colleagues, etc. will benefit by getting a better understanding through reading the content on this site. You could also send a link to anyone you would like to understand better, to save you having to speak to them directly, for example.
Mental heath professionals want to help.
However… In mental health, we want to help, of course. In the process, there is a tendency to offer models of recovery, for example. The trouble is that many of us living beyond or with a still present cancer, cannot recover, move on etc. in the way these approaches expect us to. As both a psychologist and a sufferer of long term effects, I get caught up in the conflicts that arise when we try to solve problems that cannot be solved because the problems inevitably remain. For example, you can’t ‘get over cancer’ when you are still suffering its effects. Fear of recurrence and progression is a pretty universal one, for example.
In order to help us cope, there needs to be a move away from making people feel that they have to get over cancer or there is something psychologically wrong with them because they can’t, to an approach that recognises the reality of what many of us cope with ongoingly.
If the question becomes, how can we help you to live alongside all the effects, which we know are real, and also shift the narrative away from, it's just the minority to it's a lot of people, that would be very helpful. This website could do that by becoming a community of voices speaking out about how life really is and what we really need to help us get through.
Validation is key
Obviously, validating the reality rather than belittling it, dismissing etc. is often extremely helpful. I know it isn’t practical help and many, including me, need that. However, just being told you are believed, can pull people back from the brink, as I know full well from all the messages I have had over the years. If someone says, ‘ Look, I totally believe and feel for you. You’re not a fraud. It’s others who are ignorant and need educating.’ That, in itself, can be a huge game changer for people and help them see their lives differently and most importantly, feel more able to cope and more empowered.
You might find the Cancer.Net blogs of use, and other things i have written, shorter and longer. See my Homepage on www.cordelia.galgut.co.uk for the relevant links.
Below is the poem I wrote back in 2010. Lots of people have said it empowers them to speak out, or they simply show it to others to help them understand.
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