As most of you know well, my own health can be very unreliable, and if I’m honest it is something I get fed up with talking about in a social setting. Unfortunately the fact is that I will never have normal health now, and will always be reliant on hospital care at some stage, and this post is prompted by some conversations I have had recently whilst doing my support work. When meeting people for the first time it is usual to explain what connection you have with cancer, to help you understand their experience. This I have done, which has prompted numerous conversations later about how no one would know what I have been through and how well I look. Everyone is very kind and well meaning, and actually I think I do it to others too, but it can be quite tiresome!
Cancer is now my life, and I have chosen to do the work I do, but I still struggle when people ask me how I am.
I really don’t want to provoke a discussion, both for them and me, as unfortunately there is always something to talk about regarding my health! I feel that this is a major factor in slowly withdrawing from my previously busy social life, as I am finding it more difficult dealing with this particular issue. One of my ambitions when I was first diagnosed, was to ensure that I wasn’t defined by my disease, but it seems here I have failed miserably. Wherever I go people know my story, and if I’m not asked about my own health I am asked about something else whch is cancer related. The disease has not only consumed my health but it totally dominates my working life too, although to be fair I have allowed that side of things to happen!
When you hear that cancer is life changing, they are not joking. It’s yet another thing in life that is hard to understand and explain unless you have experienced it. Again, we are all affected differently, and I do have friends that ‘outwardly’ have recovered from their cancer experience, and are uncomfortable talking about it now, I am aware it is one subject not to mention in conversation. Personally I haven’t been able to be so disciplined, but I guess that is because they have completely finished their treatment, and mine is ‘work in progress.’ I have asked myself many times if the work I do might hold me back from trying to move on, but I have come to the conclusion that I will never be able to do that, as I will be forever in treatment of one kind or another, so cancer is with me to stay, whether I like it or not.
But what is the answer to this? If people don’t ask how you are you may consider them rude and uncaring? Like most of us it is the first thing I ask people when I see them, but actually I do have a genuine interest in the answer! Maybe that is something else that cancer has taught me? After some time I took to the standard reply of “I’m fine,” and my wife asked me afterwards, why did you say that, you are not fine? It took me a long time to get her to understand that I was no longer comfortable constantly discussing my complex issues with people who although very caring, just didn’t need to know the whole story.
This problem is one that many of my cancer peers face regularly, and is discussed at great length in hospital waiting rooms up and down the country. Most of us have come to the same conclusion, and use the “I’m fine” solution. One of my very talented friends even wrote this piece about it for me. I have shared this previously in a guest post I have written, but felt after recent conversations I have had, I needed to share it again. It had a massive impact on me when it was written and is still so relevant today. My grateful thanks to you Alan!
“How are you?” everyone asks, “I’m fine”
“You are looking well” everyone says, “Yes, I’m fine”
“How’s it all going?” some people say, “Oh, I’m fine”
“You must be strong” people say, “Oh I’m fine”
The simplest of phrases that won’t let you know, all the pain and the fears that I don’t want to show.
I can’t tell you I cry when I sit on my own, and that my mind is in turmoil, I don’t want you to know.
My body’s in pain and it just won’t subside, and I feel like I have left my life far behind
If I told you these things, how could you see, your world is so far from my reality.
It’s falling to pieces inside of my head, so I tell you “I’m fine” as this puts it to bed.
You smile as I say it and you look so relaxed, so I’ll say it each time when you venture to ask, “I’m fine”
How do you deal with being asked constantly about your health, do you side step it and move on? Do you ask people how they are with a genuine interest, or do you feel that is a stock courtesy greeting for us, that no longer requires any in depth reply? As always your views and experiences are much appreciated, so please feel free to share them below.
Very thought provoking yet again Chris – It is natural to ask anyone who you haven’t seen for a while, how they are. When people ask me I tend to say ‘I’m good’ even if I’m below par because, as you say, it then doesn’t provoke further questions or discussion. You are right to say that I cannot possibly understand your situation but it does seem insensitive for me not to ask ‘how are you?’ Maybe that is my need, however, so in reality it may be best not to ask. You know that your health is always in our thoughts.
Hi Ken, it does indeed feel very natural to ask people how they are, and I do it all the time too. But I guess we get used to replying with a standard I’m fine or as you say, I’m good. I feel that most people are not looking to continue that conversation beyond that. These days I tend to hear “I’m so busy,” even in response to how are you, so maybe there is a subtle change happening. Actually the point you make about your need in the conversation is a good one, and something I hadn’t given a great deal of thought too, but you are absolutely right, and I will be more aware of that in the future, with everyone I meet. Much appreciate your views Ken which have stimulated my brain now:) Thx for all!
Spot on! 100% accurate, Chris. Thanks for describing it (life with CML for me) so eloquently x
Thx Deb, good luck with ur own issues, and glad you enjoyed the piece. I did think things would improve as the time moved on, but as I have pretty much regular treatment I don’t think it will. My concern as Linda mentions above is about making others feel at ease in their communication. We are always learning I guess 🙂 Very best to you x
Gosh, Chris. I’m so sorry, and this pinged at my heart strings for you. It can be rubbish sometimes can’t it? Managing my expectations has been the hardest thing for me ever. Always jam tomorrow, the medics dangling carrots just out of reach, with the sword of Damocles overhead. That hope that time will make a difference. That day you feel like you did in the past, only for the next to feel anything but. You are not alone in feeling in the in-between half life. We can be vibrant, joyous even, a lot of the time, and really feel that way,but it doesn’t take much to knock us off course. We have to calculate the physical and mental cost of everything we do, and used to take for granted. Including social media I guess. Sometimes sharing on social media can be soothing. Sometimes we find it threatening. Particularly if our internal drivers are such that we always try to fix things, or feel that we aren’t doing enough. I’m six years on, with heart probs, and will always be in between camps to a lesser or greater degree. Yet I’m v lucky. How to square that?! Yikes. How I let it make me feel is down to my work with a psych which is long and hard. I long for the easiness of a day not thinking, or overthinking. As do so many of our friends. And yet, I love, truly love people I’ve met through cancer. Sometimes we just need time off as well, although withdrawal can be sad too, and the guilt at even being able to say that is huge. It’s hard to do that when our friends are going through so much, but overall, that might be best for us, and our families. I always use the ‘for now’ thing. I’m active ‘for now’. I’m taking a break ‘for now’. How my friends can put up with me, I don’t know, but they do. Big hugs. Take time for yourself, lovely man. X
Thx so much, you are always able to shine a light on the issue Daisy! It is a difficult one really, and I think like you, I maybe overthinking things at times, and the fact that I am never short of writing material shows how much there is to think about! Your observations of our issues are absolutely spot on, and I am certainly blessed to be part of a community with such lovely people in it, as you rightly say! It is certainly difficult to live on the rollercoaster, and also like you I have been on it for a long time. Not sure if that helps or makes things worse Thank you as always for sharing your unique perspective of living with cancer, and the wonderful support you also give, which is so valuable to many of us. xxx
Thank you Chris. My pledge to myself this year is to do one thing a day for me and my hubby. It’s probably CBT but I don’t refer to it as such as CBT scares me and sometimes seems too harsh when I read about it. That at the moment is planning salad leaves in the garden. I must stress that my treatment was for breast cancer and considered successful for the cancer, just b#ggered the heart, so I’d feel a fraud if I was described as living with cancer (what’s that all about? Even in remission, cancer is the first thing we think about). Don’t beat yourself up ever though. You have helped me see much clearer so many times, but we mustn’t having you do that to your cost. I wish you a calm, and gentle week, possibly enjoying some nice weather, a day at a time, and being given the space to say ‘thanks for asking, it’s been a bit tough’ when someone you cherish asks you how you are feeling. We all love you. Xx
That ‘poem’ is so true. Saying that we are fine makes other people feel at ease.
It certainly is a fab poem Linda, written by a guy I met on a cancer course. We were talking about that very issue and next day he wrote that piece for me! You are so right, it is about making others feel at ease.
Totally relate to this Chris!
It’s a difficult one Abi, but it is very tiresome at times, I’m sure you’ll agree.
When my grandfather was at our house, dying of lung cancer, he used to get so grumpy when Mom’s friends would come in and say, “How are you doing, Mr. Hodgson. You’re looking good.” He was always shaved and wearing his trademark wool plaid shirt, buttoned to the chin. My fourth-grade son nearly had a melt-down one day when a classmate asked, “Hey, how you doing?” In his mind, that person should have known that we–his parents–were beginning the process of divorce and my son was mad, hurt and sad. But of course, the friend had no way of knowing or understanding that.
I think the answer to the question has to depend on your relationship with the person and an understanding that they might not have any idea of what’s happening with your health, or even that they might know but it’s not at the top of their mind at the moment. As for asking, I think it’s always genuine to ask how they are if you are interested.
Nice post, Chris.
Hi Susan. So sorry to hear about your grandfather, but how you describe things happening is exactly what I am talking about. You make some important points too about your relationship with that person, and the fact they truly don’t understand what is happening.
As Ken mentioned above, it is also about the feelings of the person asking the question too. I know from my own experience that this disease has made me look at things in a slightly more selfish way, than I did before.
It is always difficult from both sides, particularly when serious situations occur, which is why I wanted to put this post out there for discussion. Thanks so much for sharing your own views and experiences, that we can all learn from.
Appreciate your comments, Chris x
Chris, your new behavior may not be as “selfish” as you think it is. Perhaps you know of psychologist “Dr. Phil”, who appears in many of Oprah Winfrey’s shows and publications? I don’t love everything he says, but one thing I’ve learned from him is that we have to train the people around us about how we want to be treated. I find this to be true between spouses and close friends at times, much more so for less intimate relationships. This has helped me replace “I’m fine” with “I hear the compassion behind your question and I thank you for it, but I’d rather talk about ___”…or the like. This is self-compassion, not selfishness. I’ve learned the hard way that one of the hardest things in life is behaving outwardly in a manner that doesn’t align with my inward feelings. Doesn’t mean I always need to spill those feelings, but I’m always happier when I’ve acknowledged them, and let those around me know – kindly – where my conversational boundaries are. I’ve never had a negative response.
As always,warmest regards,
Shani
Hi Shani,
I have indeed heard of ‘Dr Phil,’ and the idea you have mentioned sounds great, and something I hadn’t really considered. Training people around us sounds crazy, but I understand the methodology clearly. This is something I will most definitely try myself, and suggest to the many I know who feel like I do.
Thank you as always for sharing your expertise and experience,helping us all learn more. Chris
Great blog Chris. Thankfully I look fine and am frequently told i look really well. Which is great. And a lot of the time i do feel good thankfully and I am beginning to look like my old self. But the emotional healing is a long way behind the physical. And on some days the fatigue is hard to deal with. I agree with previous comments about clarifying the “I’m fine” with “today” or “at the moment”. I’m lucky, my recovery has gone well and am 6 months post treatment and all is looking good. But I don’t take any of this for granted. All the best to you and keep blogging! X
Hi Kay, so glad u liked the blog. Pleased to hear things are going in the right direction 🙂 As u are only too well aware, cancer affects us all differently, which makes it really tricky to understand what might be coming next. I agree, the fatigue and emotional side are hard to cope with, and as there are no rules it is a question of doing what feels best for you at the time. I’m with you there also, and take nothing for granted, my personal rule is to expect the unexpected and you will be rarely disappointed. My best to you too,and thx for sharing your own experience, and I will certainly keep blogging! xx
Im finding a similar situation shifted now from cancer to grief…from my mam passing away last month…some days i want to be consumed by it and others i dont want to even talk about grief…different days different emotions…I appreciate people not avoiding me so mostly i accept the situation and change the subject after an initial coursery reply xx life is difficult and emotions so far…i now reply exactly how i feel not always a good thing but honest xx
Hi Bev. The grief situation is indeed very similar. I think the problem is people just don’t know what to say for the best, and as we know some say nothing and slowly fade from our lives. I have found myself in that situation and even with my own experiences struggled to find the right words.
Of course how to people know how we are feeling at the time they are talking to us? I love your replies, and like you, I always keep to an honest response. It is a very difficult subject which is why I chose to write this piece.
Thanks so much for sharing your difficult personal experiences here Bev, but it is helping others learn too. You are frequently in my thoughts, Chris xx
hi Chris.
When Mr H is asked I always feel he gets the balance right by answering we have up and down days! I must remember to use that!
Like a lot of the replies from others I think we do it to avoid explaining stuff which I get fed up of ‘hearing’ me say. Mostly I just want to focus on the positives, however small they sometimes are, and answering How are you, truthfully forces me to say all the negatives, and as saying them and subsequently hearing myself say them too often is not good for my mental health I try to stick with “as good as I can be..”.
You take good care Chris you do so much for others remember to add something in for you every day as Daisy describes xx
Hi Dawn, I think you are absolutely right in what you say, I also get fed up with hearing the negatives. I think Mr H has got it right!
I do always try and take some time for myself daily Dawn, I find I have too now, as things are really busy on here. It allows me to clear my head 🙂
Take care yourself, and well done again! 🙂
Hello Chris,
Good to hear from you – thought-provoking as usual. Funnily enough I had a similar conversation with my Dad who has pretty bad COPD. The consequence: I just ask him what he’s been up to.
Nice to see Palace on the up.
Best wishes,
Dave.
Hi Dave, thx for dropping by. Sorry to hear about your Dad, and I love the alternative that you have come up with. I must try and use that more myself, and maybe others will use it with me?
I hope your work is going well, and it certainly is good to see Palace on the up!
Very best to you, Chris