Almost five years of dealing with cancer and talking to literally hundreds of people during this time has left me feeling fairly well qualified to devise and advise upon cancer etiquette.
I am one of those cancer patients who wants to know everything about their illness. In fact, I can quite easily say I have become an expert on the forms of cancer I have. Knowing about these wayward cells helps me deal with my illness. Even so, I realise that others want to know nothing about their cancer at all and I fully appreciate that. Everyone deals with this dreaded disease in a different way.
During the last five years I have been bequeathed with wondrously depressing and spirit lowering tales from family members who open their conversation with, “I had two family members the same age as you and both died from cancer.” Thanks for that one, just the kind of lift I need for the day.
Other conversations intended to lift the spirit and optimism go along the lines of, “I know someone who was given months to live after having stage 10 cancer of the little finger and following massive doses of chemo and radio he regularly bungee jumps off very tall buildings”.
I know the last one slightly stretches incredulity but I think you get the picture. It’s very difficult to cover the awkwardness that comes with crossing that dividing line between my little happy family of mediastinal tumours and the healthy world outside.
One family member who shall remain nameless wrote an incredibly long and seemingly accurate list of all operations she’d had over the last 45 years, also including associated family members’ testicular problems. Actually that latter person who is nearing 70, now wears a flashing, growling codpiece so I presume his testicular problems have subsided. What possesses someone to write a lengthy tome on decades’ worth of illness is beyond my comprehension but alas, these people do exist.
Mrs-illness-list further improved her standing by ignoring me when both in the same room. She would just whisper to my wife conspiratorially…
Mrs-illness-list: “How’s he doing?”
My wife: “Go and ask him yourself, he’s standing over there.”
Mrs-illness-list: “Oh, I couldn’t possibly do that, it’s just not done in our generation.”
My wife: ‘Well, I’m not telling you, you’ll have to ask him yourself and that’s that.’
Living with cancer for five years has turned me into something of a social recluse. I find it extremely difficult to be in a social situation as I know at some point the conversation between myself and a stranger will eventually end with the word cancer.
It’s what I call a whirlpool effect and goes along these lines…
Stranger: “Hi, how are you?”
Me: “Fine thanks, and you?”
Blah blah for a few minutes and then the whirlpool kicks in…
Stranger: “What do you do for a living?”
Me: “I was a teacher but I’m retired now.”
Stranger: “A bit young to retire aren’t you?”
Me: “Ill health I’m afraid”
Stranger: “Oh, I hope it wasn’t something serious.”
At that point the conversation has plummeted into awkwardness and tends to finish abruptly.
I can’t drink alcohol because of the medication I’m on. I can’t even have fizzy drinks because it affects my esophagus. Where does that leave me? Well, when my wife asks for a wine list I ask for a squash list. “Oooh, do you have blackcurrant and orange? Wow, decisions, decisions.” I get an odd look from the waiter. I chuckle as I think “If only you knew.”
Here are a few well known sentences people have emitted when talking to me over the years. Well intentioned I’m sure, but here’s what I think:
1. “If there’s anything I can do, just let me know.”
Sorry, that one doesn’t work. Why? Because it puts the onus back on the patient.
Here’s an example we’ve experienced…“If there’s anything I can do just let me know.” “Ok, that’s great thanks.” Two weeks later we call that person, “Could you possibly babysit for us next Saturday? We haven’t had any time to ourselves for over six months now and desperately need a break.” “Oh dear, I’m so sorry, any other time would have been fine but blah blah etc…” You get the picture?
2. “I know how you feel.”
Well actually you don’t have any idea how I feel and the phrase has the effect of killing a conversation entirely. It really is a conversation stopper. What I would prefer is, “How are you doing today?” At least that opens up a gap so I can choose whether to talk about it or not. Giving the hint that you don’t want to talk about it sends me into an even deeper sense of isolation than I already feel.
3. “You must have a positive attitude.”
Really? And you presume that I didn’t have one before? I have heard endless variations along those lines during my fight with cancer. Most of the time I am extremely positive, but I also have many moments when I fall into a well of despair and find it very difficult to climb out. If a positive outlook meant being happy all the time and stress free therefore helping to cure my cancer I would try my best with that method, but I simply can’t be like that all the time no matter how hard I try.
4. “Well done for finishing your chemo.”
Actually finishing my chemo was one of the worst experiences I have ever endured. I didn’t feel a sense of completion, I just thought, well I suppose I’ll just wait for the tumours to grow back now. I need to be given a chance to convey my feelings first and to be asked something along the lines of “How are you feeling now the chemo has finished?”
Don’t ignore me. It’s amazing how many social situations I’ve been in when people in the same room totally blanked me for hours. Do you have any idea how that makes me feel? It’s bad enough feeling like a social recluse but ignoring me is the height of ignorance. Ring me from time to time just for a chat about life in general, If I’m feeling unwell and not up to chatting I’ll let you know. Maybe you don’t know what to say? Well, that’s just not good enough. With the plethora of information on the internet and cancer charities like Tenovus and Macmillan out there freely willing to give advice there is simply no excuse not to talk to me. I used to get upset before, now I just get angry and would have no hesitation in telling you where to go.
Faced with a finite future I simply have no wish to spend time in the company of anyone who remains ignorant to my plight. My time is precious and I am not wasting a single breath on these people again.
If you want to really help me you can offer to babysit and not renege on that offer; ask if Elliott would like to come out on a day trip or to the cinema with your kids - it would be a treat for him and give us a bit of time on our own. You can bring me dinner, cook for us, or offer to pick up a bit of shopping when my wife and I are shattered from endless hospital tests and clinics. You can bring me a book; take the dog for a walk. You can offer to make us a tea or coffee when you call around. You can offer to do odd jobs around the house that I can’t do any more because my body simply can’t manage it. I even need a man hug from time to time. Believe me, that makes me feel a whole lot better.
Finally don’t ever EVER promise to do any of these things and not carry them out.
There you have it, cancer etiquette revealed – please spread the word.