The primary goal of this blog is to relay my thoughts and feelings, whilst also detailing what happened to me prior to and leading up to a diagnosis of terminal cancer. In addition to sharing my own experiences, and those from a patient point of view, my wife will contribute a mirror image of my work. I believe it’s important for people to see how loved ones react to a cancer diagnosis and how the ripple effects of cancer touch every part of the patients’ life as well as the lives of those closest to them.

Saturday, 7 January 2012

What NOT to say to a Cancer Patient...

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.”
Me: “Cancer.”
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?”

5. Silence. 
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.



21 comments:

  1. Thank you Hwyel for such an honest and open blog. Hope you guys are doing OK on the good and the not so good days? Keep up the fight and know that you are surrounded by people who love and care for you and who will be there offering help or a cuppa or a hug when needed. Angela Green xx

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  2. Hi Hywel and Cathy

    This is coming to you in multiple posts due to blog constraints.

    Enjoyed your blogs. Enjoyed may not be the word everyone would choose but I do. I find your sense of humour refreshing in this increasingly PC world and your writing is highly entertaining. Besides I think you’re onto something here. There is either a Phd or a book in this. Let’s face it how many books do you see titled “What to say to a Cancer Patient”? Anyway I think this situation needs to be looked at from two different views. One, the patient’s view where the aim is to create fun (for yourself) and to magnify the uneasiness of the ‘victim’. Two, the family member/friend/stranger. But more on them later.

    The Patient’s View.

    Your conversation which ends soon after you mention Cancer with the stranger adopting shoe gazing and stammering things like “more tea Vicar?” or “Odd weather we’ve been having” could be drawn out for greater entertainment value. For example at the point they say “Gosh that’s very young to retire” you could lead them into a maze of endless fun. For example:

    Stranger: “A bit young to retire aren’t you?”
    Hywel: “Well it was enforced retirement really due to the complaints”

    Or

    Hywel: “well actually I’m in witness protection.”

    Or

    Hywel: “Well actually you can’t continue teaching if you have been found guilty of a capital offence”
    Stranger; “Good Lord, what did you do?”
    Hywel: “I bludgeoned a student who wouldn’t stop asking stupid questions.”

    Or

    Hywel: “The voices in my head kept telling me to stay at home and clean my guns”

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  3. The Book.

    I really think you should write a book. You are quite right many people don’t know what to say to someone who has cancer or worse still someone who is terminally ill with cancer. It’s weird because we are all terminally ill. It’s just a matter of timing but we don’t think that way. I think people assume that because the cancer is overwhelming to them so it must be for you. Their short but detached exposure doesn’t really get to a point of acceptance. The patient, with all their knowledge and intimate experience not just of the cancer but of the treatment accepts what it is and what it means. The patient has clarity on things like pain, perseverance and quality of life that no observer will understand. “You’ve got to fight it” might seem an encouraging and positive thing to offer but what does it mean? You’ve got to fight it no matter what horrible quality of life you might get dragged into? Who are we to put this unnecessary guilt on the patient. If we want Cancer patients to retreat away from social contact then all we need do is keep chucking these sorts of platitudes at them.

    I must admit, Hywel, that when I came over to visit you a couple of years ago I made the conscious decision to avoid complaining about anything in my life. I reckoned that my misfortunes could not compare to yours and I didn’t want you thinking “what has this guy got to complain about? What a loser.” But then I thought that actually some of my misfortunes are downright hilarious. Like the time I heroically used my car fire extinguisher to put out a blokes burning car only to have him attack me because he’d been trying to claim on the insurance. A fat lip and a $40 refill on the extinguisher was worth the laugh. Or when I witnessed a bag snatching in Penarth. I jumped out of my van and apprehended the aged and out of breath villain. But when the victim, an equally old woman arrived she grabbed her bag and started beating my over the head. They were a couple running to catch the last bus to Chepstow and because of me they missed it. The gathering crowd were all laughing at me. I drove them to Chepstow. There is misfortune and there is misfortune. Hey, you don’t have to have cancer to get frustrated hearing a friend whinging about their piles or their intimate sexual problems.

    People would be amazed to think you might seriously want to hear about their lives and families, to argue the toss about how good or bad a job the Government are doing or what you think the Bluebirds chances of promotion are. They might be interested in hearing about your kids and to talk about theirs. And not just how they are bearing up but how they are doing at school, in scouts, in sport, whatever.

    So there you have it. Maybe we should forget about trying to be compassionate and just be ourselves. The cancer patient is no more or less a family member or friend just because they have cancer. We should try to be engaging but not patronising. We should not need cancer as an excuse to be less politically correct and the fact is black humour can be really, deeply funny.

    Did I tell you I think you should write a book?

    Love

    Cousin Roger

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  4. My least favorite comment.... "So... (whispering) Is chemo as bad as they say on tv??"

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  5. I love this. May I add one?

    "Oh I know you will beat this."
    Really, do you know? Please tell me how you have gained so much knowledge about my health that you can tell me I will be fine when even my doctors are not certain. And if I don't, what then? Have I let you down? Did I not fight hard enough to beat this cancer you were so certain I could beat?

    This one came up A LOT since I was diagnosed with ovarian cancer when I was 29. "You are young enough, you will beat it!" is what I heard a lot. It was rather infuriating.

    I have been in remission now for 10 months but I still get ridiculous comments.

    Thanks for this. I will be sharing :)

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  6. This is such a great and courageous post. As a parent of a young child with cancer, I've also heard most of the words and phrases that break cancer etiquette. At the same time I do realize how awkward it is and how untrained most are when speaking to someone touched by cancer.

    I treat conversations like a gift. It's not the gift that matters, but the thought. What matters to me is my response. My responses have felt more therapeutic rather than annoying over the years. I actually welcome the 'whirlpool' conversations because I find out if they really care.

    Silence and being ignored are the worst. Especially when they know about your illness. I'd take an awkward and ill-mannered conversation over silence any day. It's an opportunity for me to teach and inspire, and that eases some of my pain.

    Thank you for such an important and much due post.

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    1. Thank you. Your comments are very valid and , yes we do need to enlighten people about this subject.

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  7. There is also the body language, besides the spoken words, that I became very aware of while I was showing the side effects of chemotherapy and cancer. With my hat or scarf covering my noticeably bald head, people would either quickly avert their eyes, move away from me, or stare at me with pity in their eyes. I missed people not responding to me as a normal human being like anyone else. I had cancer...so what?

    I appreciate your blog, which speaks so eloquently about a subject that before has not been well presented. I am a 3 year survivor of ovarian cancer and I still am told how I have won the battle; or how I "will be okay". I am trying to educate women about ovarian cancer and how the journey with cancer has affected my family and me. I invite you to read my blog: www.outshineovariancancer.blogspot.com. Thank you for sharing.
    Karen

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    1. Thank you Karen. I will be having a look at your blog.

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  8. The one that got me was "You talk a lot about cancer." From a friend who has a phobia (literally) that she will get cancer if hears the word or sees a doc. I really didn't bring it up much and when I did it was usually to tell her about a study I'd read about, or to retort when she would make comments to me like I"d never do chemo. It's leaching."

    Well, her husband and very dear friend of mine has since sadly been dx with leukemia. This woman now talks to me about absolutely nothing but his leukemia and her role as caregiver. Shows me his lists of meds, his lab reports, e-mails me pics of his bone marrow transplant, shows me the gifts and cards people sent them, even pics of the gifts. But to this day has never once asked me "How are you?" I too wrote on what to say and what not to say to a cancer patient and will be posting soon on my site. A topic we can all relate to - can't we? After all my negative blathering I will say, I think most people are well intended and or just dont get it. Sometimes, like with my friend, they have their fears which affect what comes out of their mouths or does not come out of their mouths. Good article, Elyn. You actually had me laughing.

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  9. I know exactly where your coming from! Some people simply don't think at all before saying these things!

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  10. Great article, and well needed. I am annoyed that there is no terminology for living in detente with cancer. The language is all around "beating it", "winning this" ... it leaves no other option than to "lose" or be a "loser" and the truth of cancer is that we do not all win in such a clear-cut manner.

    My own journey went well, but I cannot say the same for all of my friends in the infusion lab. I happen to work in a relatively alternative community, so I was given grief for "giving in to the Healthcare Establishment" by choosing chemo over dietary changes and vitamin therapies. (sheesh) That should certainly go on the list.

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  11. I thought I had commented here earlier...This is such a great post and blog. I love your perspectives and advice. Thank you.

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  12. My Mom passed away from Colon Cancer last January. I took care of her at home with the assistance of a home care nurse.
    People would phone during the last few days of her life-and tell her she should "go" in a hospital...that it was too hard on her kids...and that she would get the best medical care there..not at home. Well I went livid-what nerve so called caring people have-number one-they had NO RIGHT to even think they had a position in the decision-nurturing or not...as the nurse and I found out my Mom was struggling with the issue of going to a hospital-when she really wanted to die at home with her family and comforts-thank God we got her to tell us the truth that she wanted to "go" at home. It's a very personal decision that should be made ONLY by the patient-I told my Mom that the rest of us could deal with it-people need to respect the wishes of the patient-they can still hear; have words; and dignity to make their own decisions. Just thought I'd mention that-I agree with all your comments...lived through all of them by my Mom's side too and at times-pathetic to hear...here's one...the day before my Mom passed away...a well meaning friend asked me what my intentions were for my Mom's remains. She got to hear the phone hit the floor. There are a lot of ignorant people in this world..LISTEN before you talk...I hope they all read your article ...take care...
    I was sent the DASH Movie(poem) and wow...tear jerker..but it sure makes sense...google it.Linda from Vancouver

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  13. I JUST did a post on this--and it was so easy, wasn't it, to come up with the crazy, stupid, inappropriate things that people say and shouldn't (it's http://wp.me/p22afJ-C4 if you'd like a note-comparing session!)? But, in response to readers, I then wrote one on what IS appropriate to say when you hear someone has cancer. It's at http://wp.me/p22afJ-CH and I'd love feedback on it. Meanwhile, all the best in health, Candida

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  14. Hi, I've just read this blog, as someone wanting to send my neighbour a card. She's been diagnosed with terminal cancer and not been given long. She also doesn't want anyone outside the family to know (but of course, word gets around). We have seen the family around every day, and a wheelchair delivered, so could guess that something was up.

    I was going to use your 'Don't' line number one - let me know if we can do anything. Now I'm not so sure what to write - I don't want to leave a 'Thinking of you' card with just our names, as she may think we know more than she wants us to (which we do, but i don't want her to know that), and I know she doesn't want fuss, but don't want to remain silent from the other 1/2 of a semi detached house.

    Thanks for the words of advice.

    Having only read this blog I don't know what stage you are at with treatment or remission so I hope this comment isn't added to your lists of DON'Ts - as one friend of mine (now in remission) was told - The past is History, Tomorrow is a mystery, today is a gift - that's why its called the present, enjoy today.

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    1. Hi Gail. That's a tricky one. Maybe you could speak to one of the family and offer to do some shopping or cooking. Maybe a meal she can just heat up or something. If you leave a card she will of course know that you know. An offer of help whether taken or not is still an offer. Can't think what more you could do really. I was given 6 months in January but take each day as it comes. Amazingly since this blog went up we've had no end of help from various sources! Take Care Hywel

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  15. Thank you!! This confirms that i am not a complete fruitloop just yet!! My daughter was diagnosed with cancer at 16 nearly two years ago, and she is still having treatment. It's a nightmare you ignorantly think happens to other people, something you see on the television not a boring little family on the Isle of Man. It has changed just about everything from relationships with friends, family, finances and the way you look at the world. Peoples reactions have been so strange since my daughters diagnosis. Living in a small community the gossips had a field day and even now after so long people either ignore us or jump into a shop doorway in town. I am now curious as to what certain people (friends) thought they had to do but couldn't, as normality was and still is very important to us as a family.

    We've had people honestly admit they were relieved it wasn't happening to them, asking if they could just stand on the doorstep when they pop round, admitting they couldnt handle it and have chosen not to get involved, my uncle had it at 86 so i totally understand what your going through, oh i googled that it's not a nice one is it? Really, which cancer is nice then???

    I am disappointed in myself now as i have reached the point that it's easier just to stay at home all the time. I tell my daughter and my other children that we shouldn't let other peoples actions determine how we live our lives and they are going out and enjoying life thank goodness. I wish i could follow my own advice. I think to a certain degree i am also disappointed in myself for being friends with these people in the first place. I know it's difficult for other people to understand if you haven't been in this situation, and i have tried very hard to look at it all from both sides - and i know i would never have behaved the way some people have.

    Why should cancer change the people that we are and have always been????? I am disappointed in the way some of my friends reacted, but it's good to find out who your friends are - no-one likes fake people. I have come to realise that a lot of people haven't been in touch with us as it was left to me to 'keep us updated' or in touch. 'If i can do anything to help just say', is another one and because i didn't ask they didn't get back in touch. So maybe part of this is my fault for not updating them?? But my main concern has always been my daughter and family.

    Now we are approaching end of treatment which brings with it a whole new set of fears and worries for me as a Mum - and quite rightly my daughter is very excited about it. I am trying very hard not to think too much and to try and find 'normality' again whatever that may be. Maybe i should just be upfront and ask the people that walked away what the problem was?!! What do you think???

    Much love and thanks again! xxx

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    1. Hi Michelle, Hywel is very poorly at the moment and sleeps a lot of the time now. Thanks for your comment. It is very hurtful that people stay away, they are very afraid I think and even when you tell them that it's really tough and that you want things to be normal they will agree and apologise but often still coem back wth ring me if you want a chat and leave it at that. Other friends will be marvellous and I think you just have to try and concentrate on the good ones as it does make you feel very negative when you think of those who you feel have let you down. We were very lucky as we joined a choir that was set up by a Welsh cancer charity, that we are involved with, to hep cancer patients and their families, is there anything like that in your area - a support group or a children's cancer charity that may be able to put you in touch with other people who know what it's like. It can be an enormous help as you don't feel so isolated and alone. I know there are some Maggie's Centres around the country that help families living with cancer, that might be worth looking into. I have recently made a mental list of things I'd like people to help with, and when they offer I do ask people to do little things like pick up a bit of food shopping for me , collect a prescription for me. Take my youngest son out for lunch/ to the cinema. Walk our dog once a week. Lend us a DVD to watch. Sometimes that breaks down some of the barriers. Good luck and hopefully the advice might help. We started the blog up because it was a good way of keeping people informed as when Hywel's health took a real downward turn lots of people we hadn't heard from in a long time wanted individual updates and that was hard to keep up with. I hope your daughter has responded well to her treatment and is getting stronger Cathy x

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