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This week one of the latest additions to our Community Champions team, Gina (Ginajsy), has kindly put some words together for the Community detailing her experience and interactions with family, friends and work colleagues following her cancer diagnosis. It makes for an interesting and really thought provoking read.
When you are diagnosed with cancer, along with all of the angst, confusion and shock one of the biggest questions us cancer patients have to contend with is, are we really open about our diagnosis and tell everybody? Or do we keep it a secret? Both options have their pros and cons and if you opt to tell everyone, you cannot then take it back.
Knowing I would have to have chemotherapy, I assumed (incorrectly) I would automatically lose my hair and I would also need several weeks off of work due to treatment, thus I felt it would be impossible to hide.
I told close friends and family directly first. An email was sent to all my colleagues at work which I composed and finally I did a post on Facebook, so that everybody I knew would be aware. I did say in each case that this had been going on for a few weeks in the background and I was already rather bored of the whole subject, with a plea to kindly not ask me about it, as I found it upsetting. Do I regret my decision? In some ways yes, but overall I would not change it.
At first, I was inundated with messages of support and lots of standard ‘if you need anything, let me knows’. Knowing a vast majority of these offers were insincere, I did start to tell them, well actually my home could do with a good clean. Strangely, not one turned up with a feather duster!
Some people I thought would really stand by me sadly melted away. I also noticed that when I occasionally put an update out, in the hope people would then not be tempted to keep asking me, my friends count would drop. It was very hard and hurtful when this happened. I had heard it is common but didn’t realise just how true it was until it happened to me. I try not to take it personally and realise it is likely fear for themselves and not a personal affront to me. It is not that they do not care, they do not know what to say and therefore keep away. Or that if it can happen to me, it makes them all too aware that in can happen to them.
On the opposite side of the coin, I have come across the people that despite my request that I do not want to be asked about it, come over at the most impersonal moments and casually ask such intrusive, poignant questions. How is everything with your health? Have you any results? I can be walking to work, making a cup of tea, or simply getting my printing. I would try a ‘fine thanks’, unfortunately they would persist and the inclination of the how are you could be read. I soon learnt to read this and quickly scarper.
I know they mean well, but the reality is, cancer is buzzing around our head day in day out as it is. These questions can evoke such emotion, we are doing our best to block out whilst striving for normality. The answers may also be crushing and not suitable to say, well actually I got bad results and it has spread or similar. It seems people do not give this the slightest consideration when they are asking these questions.
The good intentions behind the enquiries make it all the harder to tell people why the timing and place of their questions is so inappropriate, so often we find ourselves answering out of a reflex before quietly raging to ourselves that it is not their business. This is our journey and if we choose to share any of it with them, it is an absolute privilege to them and not a right that should be expected of us.
Frustrated by people’s timing, a couple of times I decided to give them a ‘real’ answer to their question and not the glitzy, glossy version we often see that is fed to people, hoping they would realise the seriousness of it only to be shut down by a quick ‘you have to be positive’. In reality, they don’t really want to know. They just want to hear that it is all fine and feel like they have done their bit by asking.
We have all no doubt heard the cliché oh we are all dying, any of us could be hit by a bus tomorrow. For me my answer is, cancer patients have already been hit by that bus, for us it is finding out whether or not we will survive the injuries.
My advice to people that are not sure about how to speak to people about their cancer? Ask them, and then respect what they say. If they want to speak about it, they will bring it up. Otherwise just be the person you have always been to them. Most of us just want normality!
If you'd like to learn a little more about talking to someone with cancer, why not take a look at the talking about cancer section on our website. If you've had similar experiences to Gina go ahead and share them in the comments section below.
Keep an eye out for Gina and our other Community Champions on the site; our Champions are at hand to ensure you feel comfortable on the Community, to help you find the information you need, and to point you in the right direction in terms of what groups might be beneficial for you to join.
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