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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.
My experience very different. I chose not to post about it on Facebook but I did tell people who knew me well plus i gave my boss permission to tell my work colleagues. Initially there was an avalanche of OMG, you’ll be find etc and some really supportive work colleagues who had over the previous few years been treated for cancer . They understood my feelings , I didn’t have to make them feel better about my diagnosis.
If people asked me and I wasn’t in the mood to talk I just politely said I’m not up to talking about if. I found though if people deliberately didn’t ask it felt like an elephant in the room so I would say something to get it out of the way.
A heartfelt and honest account of your experience with communicating and dealing with talking to people who don't have cancer .
I have tried to post on the lung cancer site to direct people to your blog but I am having technical problems and cannot start a new discussion .
Just wanted to say hello and thanks for this very heart felt issue. I am looking after someone with cancer and he doesn't really want to talk about it either. I have to respect that . To tell others can be a problem as you say they are frightened themselves . As my husband says he doesn't want platitudes . He knows who are genuine and really care, and it is sometimes those we didn't expect?
However, a big hug to you and good luck too.
Fifinet from France.
Feel for you girl.
As you are aware my experience has been entirely different but that may be because I don't care who knows.
My family and friends have been fantastic, really concerned for me and my wife and no stupid questions.
I think, for your own sanity, you have to accept there are idiots out there, smile and nod gently.
Why's your horse eating your hat?
Cancer as you say is like being hit by a bus, and having to pick the pieces bit by bit. Things don't always fit as they should. I didn't open the flood gates, I didn't really feel the need to tell everyone, and for me facebook is probably the worst medium. It fulfils other people's curiosity, and I didn't see how that could have helped me. I also kept things away from my family as the pressure, ie what to eat, what the doctor said etc was just getting too intense and I felt as though I was a bit under attack. I only told my closest friends and at work. The way I saw it was, well as soon as people see me with the chemo hat, they will know. Surprisingly, the best support I've had wasfrom my colleagues, hat or no hat, nothing really changed. I was even given lovely healthy treats like honey and garlic. I think all we really want is not to feel different, for someone to give us a hug. And yes, at times rather than someone telling me it's going to be fine, I just wanted to hear, yes it crap. But let's still have a drink together and let's try to carry on as normal as much as we possibly can. I loved your photos
Hi Gina, you so very well articulate those things I want to get across but can't find the right words to say. It's my husband with cancer, not me, but I too get totally ticked off by the 'you must be positive' people. An enjoyable read of a truly difficult subject.
Thank you all for your kind replies. It is good to hear that some of you have had some really positive support. I would hate for people to think mine is all negative. Colleagues have been great it was some friends that dropped away and sadly what I thought was a very close one.
Fifinet I am sorry that you are looking after someone with incurable cancer, that must be so difficult. I guess it is very different when you are very close to the patient.
Phil maybe it looks tasty?
The horse is quite young, only 4 in that picture (5 now) and like toddlers everything goes in the mouth.
Ask123 I am glad you have had such great support and been given some tasty treats too
Thank you LoobyLou, it is hard when people just don't get it that it may not all be fine, especially if you are a person that does not want to pretend that it will be. Maybe we should make this in to flyers so we can hand it to them
Just to explain why I put it on Facebook, I agree it took me a while to decide whether to or not and I still wasn't sure if I should or shouldn't. I come from quite a small community, everybody knows everybody and I couldn't bare the thought of bumping in to people, them being shocked and me having to have the same awkward conversation over and over with them explaining what was wrong. Then them struggling to know what to say, I thought if they know I won't need to explain and they won't need to fumble for the 'right' thing to say.
Also because I figured if they heard it from the horses mouth (see what I did there) there can be no deviation and speculation. You know what it's like, you stub your toe in the morning, by the afternoon you have been airlifted to hospital to have your toe sowed back on which you hurt whilst being Beyoncé's stunt double in the latest James Bond Film.
It is interesting to hear of everybody else's experiences. Please do keep posting yours, or any thoughts on this.
Hi Gina I enjoyed reading your blog. Myself i have cancer and was diagnosed a year ago. I just wanted normality in my life it was a shock at first and for the first few months of going through chemo I had more visits than enough from people. I enjoyed having the company but as time goes on you find who your ture friends are. I have a bunch of friends who have stood by me when i have cried shouted out. My family have also been great. When i was first dignosed I told people that was my way of dealing. I am the sort of person who enjoys socializing and going out. I still have my moments I am still on chemo but I get on with life. I have a postive attitude which I think helps. The thing I struggle with is the chemo brain i have to write things down. Keep writing the blogs
Your piece rang true on so many levels and was very nicely written, I`m sure many people reading it, like myself, can identify with your thoughts and actions at was is, inevitably, the most difficult time many of us have faced.
You are absolutely correct when you say that the diagnosis IS like getting hit by the preverbal bus, let alone having to deal with all that that entails. I was particularly not looking forward to telling my 89 year old Mother that I had cancer and it was as difficult as I expected, but you have to do many things on this journey that are both tough and emotionally challenging.
I admire the way you handled your situation, but I think it goes to illustrate just how difficult it is to try to please everyone, it`s just not possible, especially at a time when you should be thinking about yourself, first and foremost.
You have my very best wishes for the future and thank you for posting.
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