This post is prompted by a fellow patient of mine. When we met for our regular dialysis he gave me an article from The Guardian, written by a journalist who had cancer, and was writing about some of the things that were said to her, both good and bad. We both smiled, because over the years we have all encountered instances of other peoples embarrassment, when talking to us about our illness.
When I was newly diagnosed, I wasn’t sure how to communicate my situation, so I spoke to a very good friend of ours who has been through the process, and the one thing I remember from her was that, ‘people will surprise you’. She said that most people will be brilliant but some, wont! She was absolutely right.
As we know, everyone deals with their illness in different ways. Some don’t want to talk at all, others will only tell close friends and family. I felt that if I was going to be sick and my appearance was going to change dramatically, and I wouldn’t be socialising etc, I needed to tell people and explain what was going on. That way they could understand what was happening.
The only problem with that approach is that we all take in information in different ways, so some people had a problem in understanding. Most people asked if they weren’t sure, but I felt an element of caution from even some of my very best friends. What I hadn’t realised was that I had given them a problem! That was that they weren’t sure what to say or do. It made me feel slightly awkward too,for them.
What I wanted, and am sure most patients are the same, was to be treated as normal, but I got used to the fact that this couldn’t happen for a while. I think what had happened was that I had dealt with my own prognosis, but they also needed time to understand what was happening.
Let’s be honest, we all like to say and do the right things, but how can we know what to say, when something enters our world, that we have very little prior experience of? For example, how can I really talk to someone who is pregnant, about having a baby? I can’t understand how they are feeling, and nor would I suggest such. Also there is a fear of silence in a conversation. People always feel that they have to fill in the gaps, where really silence is acceptable.
‘ I know how you feel ‘ This is always a common response. How can people know how YOU feel?
‘ I fully understand ‘ How can they?
‘ Be positive ‘ No one can make someone feel positive, who isn’t.
‘ Keep fighting ‘ We’re not fighting, just trying to survive.
‘ You’re so brave ‘ Personally, I don’t consider myself to be so. A lot of people have said this to me, to which I say, that I had no choice with the issues I face. If I had gone into a burning building to rescue someone, it would be my choice, therefore I might be described as brave.
The above are just a few examples of common things that people say, I guess more from courtesy than anything else, and always meant with the best intentions.
It is very difficult to generalise about what people would like to hear from you, but I have never been shy when talking to patients, and I have found that most people appreciate an honest approach. If you don’t understand something, let them know. Also I have found that if you really don’t know what to say, say exactly that! It is better than avoiding things altogether.
I have written several times about the feeling of isolation that you have, with a cancer diagnosis, and the fact that some people might then ignore you, can only make that feeling worse! I know that that is the last thing that they would want, but by ignoring you, they are
showing that they don’t know how to deal with the situation. It is borne more out of a lack of knowledge/experience, than anything else.
Talking to people affected by cancer, is not only about what you say, but how you say it! At the end of the day you must remember that we are all human, whether we have a serious illness or not. Just because we are sick, it doesn’t mean that we are different. We don’t necessarily need special rules to engage in communication, maybe just a little more thought than normal!
Can you think of any examples, good/bad of things that people have said? Please feel free to share them, on the comments section below this post.
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Loved your blog post today. It reminded me of how people were with me when I told them about my mum being ill and was even harder once she’d died as people don’t know what to say or do. It’s a learning experience for everyone involved, so long as they’re open to it…xx
Thank you for sharing your experience with the community. That is exactly the kind of thing that I was talking about,the awkwardness. I think the very important point you make, is ‘if they are open to it’!
I look forward to welcoming you back to the blog
Just read this article again. It’s bang on the money as always. There should be a hand out for ‘families and friends of the patient’ with this kind of guide in it. Because, for me one of the most difficult things to deal with was people averting their eyes, or being uncomfortable around me.
When i got sick, I didn’t expect people to behave the way they did, some really amazingly, as you say. But some just disappeared from my life and it hurt me. I couldn’t figure out why this happened. A couple of years later, once I was back on track (after al sorts of head reading and emotional breakdown) i got in touch with a couple of people who had disappeared and asked what happened. Both said the same thing, they were sorry, they just couldn’t deal with me being sick and it had upset them so much they couldn’t bring themselves to be part of my fight. They felt awful about it, like they’d let me down (which they had) and were so grateful I’d called to speak to them so they could explain themselves.
It’If they’d had some sort of understanding about how to manifest their love and hurt, they wouldn’t have suffered like they did. So little is provided to the families emotionally. Come to think of it, so little is provided to the patient emotionally either. All the chemo in the world can’t fix a broken head.
Anyway, class article.
That’s why I write this blog and thank you for your observations. I think this is a very common issue, as I wrote this post nearly a year ago and this time round we have had a lot of interest again.
I think sometimes, that we, (the patient) are so consumed with our own issues that we don’t consider how others see the situation. Most people, unless they have been personally affected by something have very little understanding of it. To avoid embarrassment it is easier to ignore it.
As we are both aware, there are many more things involved in a cancer diagnosis than, just the physical issues. In some cases these are easier to fix than the psychological and emotional scars, which in some cases can be with you for the rest of your life.
Unfortunately, none of this stuff comes with a manual. It is what I have picked up along the way, and what good is experience unless it is shared.That’s why this blog was born!
Thanks for sharing, and your positive comments, which are great for the readers. Cheers, pal, Chris
You are soo right. My best friend is suffering of cancer and its like really awkward sometimes…sometimes I just dont know what to say to her so I simply hug her. I mean I know its hard for her but she has to survive. I am so confused when I am around her; partly because I dont know how to deal with her and partly because she has become very sensitive.. so I try to be extremely nice to her and try to make her happy. But I am still very confused and I need help!
There are no rules for this sort of thing, and everyones reactions are different. That is what makes it so difficult. I have found that the biggest hurdle, is always talking about the disease. Once you can both do that more comfortably, you should be able to talk more openly aout other things that are important to you both.
Cancer is life changing, not just for the patient directly, but loved ones etc, so good communication is the key to it.
I hope you find this useful. Thank you for sharing your issues, which I know are so common for people affected by cancer. We can all learn things from each other.
Feel free to drop back and let me know how things are going, Chris