This week I was doing some filming. I got asked about some of the changes I had seen during my own experiences with cancer since 2007. Back then it was still difficult talking publicly about the subject. But the Internet was just coming into it’s own. Being bombarded with information booklets is what I remember most. Which was an improvement from previous years where it was hard to find. However, these days you only have to open any social-media platform, and cancer posts are everywhere. Surgeries, chemotherapy and radiotherapy sessions there for everyone to see. People proudly displaying their scars.
Also, this week I helped facilitate our regular prostate cancer support group in my local cancer centre. Something I have been doing for many years. Here we have members that have been attending for a long time, and also newly diagnosed patients. We kicked off the session by asking one of our regulars to tell us how things were for him. Before we knew it, we had got into a part of the process that newly diagnosed people may not even experience. The group were interested which prompted a discussion. I’m not convinced that was helpful to the new members. But is something that happens where people feel comfortable to talk.
This prompted me to think about my personal communications. Speaking openly and unfiltered about this terrible disease is something I am ‘guilty’ of too. I am frequently giving presentations or being asked to talk about many uncomfortable issues. Which I’m happy to do. I believe that people should hear things as they really are. Not wrap them up in cotton wool. But does that frighten people? So many vulnerable people hearing what I say. Things they may not even experience!
Of course, there is an off button! People don’t have to read it I guess. But it is becoming more difficult to ignore these days. Personally I think that is a positive, but it may not be for everyone. Is it doing more harm than good? Like with most things in life it is about extremes. No information at all and within a few years you can’t escape it! But one thing I want to stress at this stage is that it is not all bad news.
Cancer is a particularly emotive subject and we tend to have many highs and lows, with little in between. Hard to explain to those who thankfully have no direct experience. How is the disease viewed by those people I wondered? So I asked, and mostly people are frightened when the word is mentioned. Many have friends/family experiences, but most see charity fundraising adverts. Where in many cases the fear factor is increased, so you dig deeper into your pocket.
Nobody chooses to get cancer! But if you do, there is a good chance you may continue your life WITH it. Meaning things will change in so many ways. But not all bad, I must emphasise that. A lot of people I know have found a new meaning to their life and are now doing things they might previously never have imagined. Just look at the impact covid has had on our society and see how many lives have been changed forever. New ways of doing things have been found, many certainly better than before.
We all know the importance of the language we use, both spoken and written. For any situation we are in. When we communicate, there is a good chance our message may be misunderstood. Some of us need time to think about what we want to say. Others like myself fire quickly ‘from the hip.’ Thankfully we are all unique, which makes the world an intriguing place. I am too old to really change my communication style. Having been fortunate to transfer my verbal ways, to social-media. Humour is one of my personal strengths but it can be difficult to introduce that in a thread about cancer!
I would be delighted to hear your views about how you navigate cancer online. What style do you prefer, and can it be overwhelming at times? Do you find other peoples reality quite frightening, or reassuring? Do you use the Internet more or less since your own cancer experience. In summary, does the reality that you find help or hinder you?
As usual please let me know in the comments below.
Thanks for sharing your profound thoughts as always.
Since our own journey, I’ve found purpose in raising awareness of childhood cancer via my social media platforms, and yes, I sometimes worry that people might find that stuff too heavy and off-putting but then again, what is the alternative? This is the reality of so many people and if it helps someone navigate their own journey or understand the difficulty of their loved ones, then I’m going to keep doing it.
You are reaching the position I am in. I didn’t realise how helping others could be quite so fulfilling. The more I do, the more I love my work and knowing I am able to help others is the icing on the cake.
As you know I have been doing this work for more that 10 years and I have developed a style that most people seem to enjoy, and look for me to talk about subjects others won’t mention. My social-media stats tell me that the more edgy my piece is the more readers I get.
I assume by now that if people read my work or attend my presentations they are aware to a degree what my style is? I’m too old to change now but I am told frequently that the way I deliver my work is ” with refreshing honesty.” I will take that!
My very best to you guys and big love to Toni XX
I appreciate not everyone wants the same level of info. But personally my frustration that my medical team are not open & not wanting to answer questions & the sanitised info from some charities has meant social media has been a lifeline for me, made me feel less alone.
Your opinions match my own. I understand why the sanitised info is there. But that is not my style. Very disappointed to hear about your own team? Mine are outstanding! Enabling me to continue living and risk taking, within reason.
Excellent article Chris. Life changes forever when you get that 1st diagnosis. I’m very open about my “journey” as it helps me cope with life. It’s something I will live with forever, which I’ve accepted. It’s scary but life goes on
Thanks for your kind words Paul. Life certainly changes when you are diagnosed with #Cancer In many cases more emotionally than physically. I am a tell it like it is man, but understand not everyone is. I’ve also accepted my situation and worry no more.
Beautifully written Chris. I also prefer frank talk and I learn a lot from people living with different stages of cancer. And I grateful for the global knowledge sharing networks of the internet. My life has changed emotionally and physically. I have learned from my own life
Thank you for your kind words Kwanele, they mean a lot! The global #CancerCommunity is certainly an incredible resource for both patients and professionals. I’ve learned my own life too. With only corporate speak from large healthcare we would all struggle.
Once again, powerful words Chris. Never change what you do, keep doing it, and then some. Found myself nodding like the Churchill dog with every sentence. Thank you for sharing.
Thanks so much for your kind words and encouragement John
Like telling people that their cancer is a good cancer to get. There is no good cancer to get.
That’s for sure!
Keep talking Chris. #DoYouCUs
Thank you so much Kate! Very challenging to get the right tone constantly.
I personally appreciate honesty & openness. I get frustrated with my Oncologist that he won’t have open dialogue. if I can’t talk to him or SCN then I have to refer to charity sites. This attitude makes me uncertain & I would much rather have open, even if difficult, conversations
Very sad to hear that you can’t have an open dialogue with your team Catherine. You need to have that conversation if you haven’t already.
Thanks Chris. I did pluck up the courage after a question was rudely dismissed at last apt. Spoke to SCN about it. Next apt in November Crossed fingers I am considering asking if I can change Oncologist but worried to go there.
I thought about this a lot before replying. For myself, how open I want them to be is entirely dependent on how my ‘headspace’ is that day. If I’m not ready to hear it that day, tomorrow’s another day to hear it
That’s very sensible and considerate. Like most things in life, we must all do what feels right. Impossible to please everyone all the time much as we might try!
It’s definitely a tricky one and I’d always say to the newly diagnosed dip in and out of support as needed. But try different ones for the right fit. If I’m honest I’m glad I wasn’t online during my active treatment and I didn’t do F2F support.
Great advice J and so true! The ‘vanilla’ advice given by corporates just doesn’t do it for me. I feel that the online #CancerCommunity is vital these days. But important to find the right ones for you as you say. Everyone is different!
Agree – personally I don’t think anxiety, fear and worry make us very good at taking on information. As you say very individual and that’s what makes communication so tricky. It’s an art.
The tricky thing is that patients need all the information required to give informed consent to treatment, which includes the prognosis without treatment & the expected benefits of the treatment. Otherwise it’s not informed consent.
Which in most cases is impossible. If you don’t have a medical background, or at bare minimum, a friend/family member that’s a nurse in your issues specialty… you’re not going to be informed in 15 minute appointments well enough for consent to be truly informed I’d say…
All of the info should be available, and we are lucky to have our advocates out there seeking the truth for patients.
But in my view, from the individual patient’s perspective, each pt needs to take as much as they want and are ready for and is right for them at the time.
As long as the patient is fully informed and has the info available to them it is up to them to make their own decisions. When vital info is kept from them they are unable to give informed consent. This can have devastating consequences for themselves and their families.
Yeah I find that people want a different ‘inspirational’ story. Unfortunately I can’t tell them anything other than what it is. There is no other story other than that when you come out of it you have to work 247, re-train at work, need RedBull to get you thru the day etc
And that’s if you are fortunate Leanne! Keep telling it like it is, as I will. I don’t want to give the impression that #Cancer is anything other than very tough. However I do believe that we will all find something positive too in our experiences.
Chris I really enjoyed this blog (I enjoy them all but don’t think I always tell you?!) thank you. Also really good to see the replies and perspectives people are sharing as a result.
Coming from you that means a lot Kate! The post has created some really interesting discussion. I probably don’t tell you how much I admire your work, as often as I should either. Thank you
Another useful piece. Thank you.
Find people have already been frightened out of their wits, but I think you’re right to suggest that there may need to be balance around quantity and timing. And just how it is at that moment, too xx
Thanks so much Leah. There is a mixture of support being offered with very different people searching for it. Hopefully everyone ends up with what works for them. XX
When Kelly was diagnosed they actively advised her to stay offline
I was told that too Roger! It can still be a difficult place to navigate if you are inexperienced and newly diagnosed. But I would venture to say that you will find much better and appropriate online support than any #NHS and giant charity can offer.
There’s the whole continuum of patients. Those who want to know everything asap (and will find it online, join multiple forums, not automatically worriers or control freaks but need all the info, to those who really just want to be a number and be processed by the system.
Absolutely spot on Simon. No one size fits all, everyone looking for different things. Always the big question, what does cancer support look like to you?
I was V lucky that my wonderful surgeon told me EVERYTHING about my dx, including likely prognosis, & showed me my notes. It took him 2.5 hours & made him late for his next appt – yes, I was that ill. He tries to tell all his patients the truth, ‘as much as they can hear.’
That’s very positive to hear Peggy. Unfortunately when you enter the #NHS environment the clock starts ticking! None of get the time we deserve and it is incredible difficult for clinicians too. Thank you for sharing this
I have found online information & across the board absolutely exceptional. Would not want to be without it & would encourage everyone to never stop their education & learning, re their own disease.
Me too Colin, and most of us I would imagine. The incredibly selfless giving experience from the #CancerCommunity is just wonderful! We all laugh and cry together. Something that cannot be created by corporate healthcare providers.
Thank you for sharing this useful blog content.