How come we're so uneducated? Well, I don't know about you, but its not a subject that's the top of my browse list. Why would it be, until and unless it effects you. There are a multitude of sites providing information - some specialist, some covering the whole range. Their purpose is to be informative, they stay factual and tend to focus on the positives - that people are surviving longer thanks to advances in research, new treatments, earlier diagnosis etc. Until you know the detail of your diagnosis, what you don't need is the full doom and gloom of the worst case scenario.
As a result, it's left to those with cancer to educate those around them about their individual situation and about the subject itself. But that's difficult because of the emotions - the emotions the person with cancer actually feels, the emotions the people who surround them assume they feel, and the emotions of those surrounding people. Basically, its a hot bed of emotions. The person who has cancer has to do so many things for others: they have to care for and manage the emotions of those close to them - their partner, their children, sometimes even their wider family and close friends, all whilst dealing with their own fears and the practicalities of their own treatment.
So, with all this emotion flying around, how can someone with cancer educate those around them about the bad stuff? How can they do this without upsetting everyone? Its very very difficult. No-one wants to hear about it, to be educated, not unless they have to. Some months ago, I saw this youtube clip of Holley Kitchen speaking about her metastic breast cancer :
It's a shame that she had to do it and others couldn't do it for her. But that's the nature of the beast - the human beast I mean, not cancer.
Those who have cancer can do nothing other than face it. Those who surround them just want it to go away, they want their loved one, their friend, to just get better. But wishing it away doesn't help. It can't make the cancer go away, nor will it make their loved one/friend feel cared for and supported whilst they're having to face this trauma. So, try to remember, when someone you know has cancer - its not about you, its about them. Listen to them, support them, or stay away. If you can't handle it, just saying sorry is absolutely fine. Platitudes are annoying, awkward looks are upsetting and being told to fight is just plain insulting.
There are circles of relationship - the inside circle is the person with cancer, their partner and any children; the next circle is other close family and/or the closest of friends, all the way out to acquaintances, neighbours and colleagues. The rules are that love, care and support goes inwards, the needs, requests and requirements come outwards.
During treatment, what's needed is offers of practical help - to pick up the kids from school, to drive them to hospital for one of their many scheduled visits, to run little errands - to the shops, the chemist, to put petrol in the car. They welcome a card, a text, a listening ear, a hug, a kind word or helping hand to the person providing them with primary support. What they don't want or need are exhortations to be brave and to fight, to hear about whoever it is you know who had cancer and beat it, or didn't. To be given enthusiastic details of some weird and wonderful alternative treatment, to have to handle your fear and your emotions about their cancer.
For those lucky enough to be without a terminal diagnosis, what happens after the treatment ends? Unfortunately, it doesn't all magically go away even when you have no spread, no recurrence, no secondaries. The emotions are still very present, but the support tends to melt away because the natural assumption is there's no longer a need for it. The post-treatment reaction is really tricky to anticipate or understand - for everyone. Luckily, Dr Peter Harvey wrote an exceptional article on the now defunct Cancer Counselling Trust website on this very subject. Whilst the article focuses on breast cancer, it has proven useful to those with all types of cancer and to those supporting them, explaining how finishing treatment doesn't necessarily mean the resumption of normal life. I hope you find it helpful in supporting the person you know who has been diagnosed with this terrible disease.