I went to a wedding on wkend of a lovely friend I met while studying at uni. It was great to see her after around 2 yrs since our last visit. As its natural at a wedding we were seated together in clusters of appropriate similarities....I was seated with other young adults from various parts of australia (dan had a wkend to himself and my best Andrea looked after me). So Andrea and I were chatting away when meals started to arrive. And that's whe the fun began u may say.... Due to chemo I shared with the bride my eatin needs and what I couldn't eat. One main had ham and soft cheese (this one was not for me). The caterers were very careful to ensure my meat was well cooked and that I got the correct meals in an alternate drop menu. By now the other table members were looking confused to why all the fuss over me. So I said "i am undergoing chemo atm abd need to be very careful with what I eat". It was amazing to see the faces and reactions around the table : the half drunk guy asking a million questions (which I happily answered), the young carefree lady (who couldn't even keep eye contact with me), the lady who looked at me with fear and sad eyes for the rest of the night and 2 people who did not speak to me again after this conversation. What struck me was the drunk guy saying : "you are dealing so well with this, laughing and having a great time". My response was " what else do you do, give up and die?" For me it is simple: you fight cancer, you laugh when u can (its the best medicine) and u do not let the cancer have the upper hand! "Attitude is a little thing that makes a big difference" ~Winston Churchill
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Frequent Contributor
I think you are right. "Cancer is never dinner conversation". I can just see the evening playing out exactly as you said, with everyone stranded inside their own reactions. I don't suppose there is much that can be done about that. After all, you are not responsible for other peoples' reactions. We had visitors staying at our place while they attended a conference a few years ago. We cooked them a big dinner and sat down to eat. They asked me why I was not at work during the day. I said I have some health issues at the moment and left it at that. Later my wife asked me why I had not told them I had cancer. I said I made a decision to not reveal more because I did not think it was dinner table conversation! She hadn't thought of it like that. H
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Super Contributor
I guess the drunk guy took some of the awkwardness out of it for the others . This all goes to show how we are all different in some ways and we cannot expect others to react as we may . Most of us have had to learn this . I hope you had a good time at the wedding . It sounds like you did .
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Hi Rubes1984, Hi everyone.. Yes, it's frickin hard. I've felt that I have to listen to everyone else - about their mortgages, kids, car payments - whatever, but there is an unwritten law that I dare not talk about this illness, or my experience with it. If it's taken up your life though - as it has mine - it's kind of the only thing in my life, so I'm pretty much left with nothing to say apart from general chatter (the weather?). Then people wonder why you don't have anything to say. It's driven me to the point of despair sometimes as I want to interact but I feel silenced. Damned if you do, damned if you don't.
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Frequent Contributor
Hi Sarah You have put that point quite succinctly. I know what you mean. It is a struggle for me to not take on the role of the 'sick person' which is what I am in most peoples' eyes. I have a few close friends with whom I can be a version of me I have decided for myself, not the mainstream version that the illness had already mapped out for me in which I only had to turn up and play sick. I am more and more inclined to agree with the aphorism: "one door closes and another opens". I used to hate it because it just seemed superficial. But now I am feeling that some doors are closing because I have opened other ones. I have opened these new doors deliberately. It is a result of the events in my life and my understanding of them. That there is a loss associated with some old doors closing is just a part of it all. I am living my life as I see it, not a life that other (healthy!!!) people see for me. It is hard to be confronted with this. Well it is for me. But I have to see that I am the one who opened the new doors and I have no choice but to go with that. The loss is there, sure. That's the way I deal with the "damned if you do, damned if you don't" thought. This site is a new door, don't you think? It is for me. H
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Super Contributor
Sarah,I get what you said . Others talknabout what's on their minds at tge time but you can't because they don't want to know . Cancer does become your life for a while . This may change to some extent . I don't remember how long you've been living with this and where you're at now . These factors make a hude difference . For me ,not a day goes by that cancer is not on my mind but after more than 2 years since treatment ended ,other things take up a more of my thoughts . I do spend a lot of time talking to others online or reading about them ,especially people with the same cancer as I have/had . I cannot share with others offline either . I will always be a part of a special group which has become more important to me than other friends .
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Regular Contributor
This is one of the spects of cancer that has occupied many of my thoughts. I was diagnosed 5 years ago and from the very beginning I had the 'need' to be quite open about what I was experinecing and what was happening to me. I quickly learned that while some are more then happy to listen, often so that they can help, many others find it too difficult to consider. I guess what cancer has taught me is that we all behave differently and I have learned to not make judgements about this. evryone's story is different. Sarah, I really undrstand your perspective of being on the outside at times. I wrote about this a while back. I think the best comment that poeple make inadvertently when they are around someone who has had cancer, is 'I'm so tired". I now smile wryly and think that you really have no idea about really being tired! Anyway, it sounds as though the wedding was fun anyway. S
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Yes Harker, one door opens another closes, or vice versa. There is grief associated with the doors that had to close. In my case they were often forced to close. I was thinking today how tired and fed-up I am from constantly shifting my focus, my plans and goals because I had to - it being forced upon me. Decks of cards flying away in the breeze. Samex - I understand that 'need' to be quite open about the experience and all that was happening, I was only 23 when when it happened to me(the first time), and I experienced a lot of revelations about life and the puppet theatre around me; it was a new world I was in. All my thoughts and feelings though were swiftly shoved back down my throat. If I brought it up in any way, I it was deemed that I was feeling sorry for myself. Horrible, horrible times. Silly, no not a day goes by without me thinking of it too - it is my life. I've come to accept this, and embrace it even - as simply: just my life and my experience. You've got to find your circles, if you can, which is I think vital for ones own sanity, healing and quality of life. This takes huge effort though, because we are all locked away in isolation, buried in hospital appointments, diets books and research papers on cancer and what causes it, some of us are not even mobile... So, it's really yet another task to get around to doing, if you are lucky enough to be even able. The internet is useful in that way, and Harker yes, this site is helpful in that respect, finally.
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Hi Rubes and everyone who has commented: I do understand where you are coming from. But my problem is somewhat different as my op left me with a facial disfigurement - which tends to be 'the elephant in the room' which grows bigger by the moment until explained. My profile pic cleverly disguises it ;-) I really have not had anyone give an adverse reaction once told. All have seemed quite interested as I explain factually how it came about and what was done. Only one person asked outright at first sight. We were new neighbours who met over rubbish bins. I found it so natural from her I would be happy for others to do the same. She simply said 'Wow! You've been in the wars! What happened?' This was when I was very swollen from infection and red from radiotherapy. When I got to know her more I mentioned how thankful I was for her reaction. She was slightly horrified and said 'Oh no! I can't believe I said that.' But I reassured her just how good it was. Harker and Sarah: I totally agree with the open/closed door theory regarding both people and opportunities. Some people have drifted into my past; others have stayed with me and yet new ones have come on board. I am very blessed. Warm hugs to all, Pamela 🙂
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Deceased
Hi Rubes 1984 I had a similar experience many years ago. On a special diet in preparation for treatment to start on the Monday and attended a wedding three hours drive out into the country - real bush this one, very little in sight other than the rarely used country church where the bride was married. Wedding breakfast was a buffet, in the family home, lots of food, none of which I could eat. There was nothing on the tables that was allowed in my diet. Again, the host had been advised before hand. Fortunately most of the people there already knew I had cancer, so I didn't have your experience. Embarrassed hostess hunted through her cupboards and eventually found some slightly stale white bread (wholemeal was verboten) and some eggs, so I sat there and in the midst of all the exotic food had two poached eggs on toast! What made it more interesting was that the bride had had cancer as an adolescent so you would have thought that the family would have been more aware. WEare still friends. Cheers Sailor On the day we lost the cereal account I finally decided to go to sea. Eric Newby The Last Grain Race
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Harker - "They asked me why I was not at work during the day. I said I have some health issues at the moment and left it at that." Yes, that's where I leave it too these days. But still, in the past I have been bursting inside because of the principle; that it apparently cannot be talked about is wrong. I have felt that it should be up to me, having gone through the experience, to advocate for our group by standing strong and openly announce my experience; keeping silent being another way that the "defective" are repressed. Or so it seemed/seems to me. It was a battle though that often I could not fight in my condition, and I was often quite in need to be part of normal social events, consequently my principles were often forfeited and I kept silent about my condition for the sake of being accepted by the group and to rest in the experience of normality, if only for a few hours. When the query arose as to "why I was not at work during the day", or anything else that left me cornered to answering that I had some "health issues", I noticed that it was left up to them to make their own assumptions about what was going on with me, and and they did - mental health issues (depression or whatever) was often assumed (it being quite a popular illness at the time/moment). They would never, in their wildest imaginings, thought of cancer. After all, I "looked so well". So again, damned if you do or don't, a frustrating and painful quandary in my experience. Why should I be kept silent so as not to upset the illusion of perfection that their social event aimed to uphold? Wasn't my human experience just as valid as theirs - as anyone’s? I was younger at those times, and deeply affected by being isolated from my peers and what people thought of me, whether I belonged impacted me greatly and frankly compounded my trauma. Now in my 40s, I have come to terms with living on the fringes and can sit with society's imperfections, although sometimes still a little uncomfortably. However, I'm still not one to announce my experience for fear of judgement, isolation, or workplace complications when maybe I'd like too for the principle of awareness raising and morale advocacy. Sarah
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I think we should all follow our gut instinct with this and say what we really feel we want to say. If others can't accept that, it is their problem to deal with, not ours. If we were celebrities who got cancer, our story would be all over the media as though we were someone more special than the rest. Statistics state that 50% of the population will get cancer by the time they are 85. It is becoming a more common occurrence so our speaking out now should help future sufferers avoid the awkwardness we are coping with. My priorities have changed for the better, I believe. My future relationships are important to me and they do not include tip-toeing around other people's unacceptance of my condition.
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Pamela - "Only one person asked outright at first sight." Your experience here really touched me, I do understand just what that blatant honesty can do; it's refreshing bringing relief, and it's normalising - yes you had been in the wars and experienced all the internal secondary challenges that being in the wars brings with it. In that one statement your experience was acknowledged on equal ground, from one human to another. I have found that some people are averse to extending that acknowledgement (for various reasons), and this is salt in the wound. You know what? When I went through the worst of it I actually had an amount of envy for those that had physical evidence of their experience. In my mind it was like a sign to those around that read on my behalf "careful of me, I am fragile and dealing with stuff", some kind of pin of that recognition. Not sure what I am trying to say here, I am still processing it. What I can say though is that my illness was like a deep silent scream, it was impossible to communicate my agony to the outside world, probably from trauma and maybe being quite young. Not that I ever wanted sympathy understand, I was simply broken and dealing with normal life would've been more accessible with allowances made for me - like they might be for any dis-abled person. I suppose, in my fantasy world, having an external symbol of my internal trauma might have communicated that to the world around me because I simply didn't have the tools otherwise to do so.
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Pamela - "I think we should all follow our gut instinct with this and say what we really feel we want to say." I agree with you in the ideal; however the practical was/is just not that simple. I lost friends, I didn't get jobs, I lost jobs, I was bullied at work, by family.. The analogy of being the weakest or sickly chicken in the pen being pecked to death, was a reality for me. If I wanted to avoid this experience, I learned to keep quiet.
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Super Contributor
You started a good conversation ,Rubes . Sailor ,it was really bad how they didn't cater for you properly at that wedding . Sarah, be glad you don't have outward signs of the cancer you had . I get what you meant but I can tell you disfigurement can be so hard with which to cope . I used to doubt it was worth having surgery because I hated how I looked afterwards . It's not so bad now .
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Hi Silly I knew beforehand that I would have a severe disfigurement. I had an ulcer (SCC) just inside the left corner of my mouth. I chose surgery over other options knowing they would take a full depth piece including the corner of my mouth about the size of a ten cent piece. A folded graft from my wrist fills the space and lines my cheek. An arm tendon was split and attached between my cheekbone and the new corner to give me pull for a smile. I tend to smile a lot as I look better that way 😉 A graft from my leg covers my wrist. When I asked my surgeon if I would 'frighten kids in the street' he said "Probably!" But I wanted to stay alive and this was my best option, so no regrets. The corner is permanently open with a tooth showing. I can't drink from a cup as I dribble. A straw to the back of my throat and a tightly clamped mouth works fine. Try swallowing liquid with your mouth open ;-) I also tend to cover my mouth with a tissue/serviette when eating unless alone. I am 14 months since surgery but have long accepted that this is the new me. I am not even interested in knowing anyone who cannot accept this. I have enough negatives in my life without allowing any more. That said, I am happy, positive, loving and loved - more than many have 🙂
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Thanks everyone for ur comments and sharing ur experiences in how much is appropriate to share and the limits to which "its acceptable" dinner conversation. I agree Sarah how the kids, mortgages and happy little life discussions are so much more acceptable.....but cancer is too dreary and painful.....as if they want to hear about it. It's funny so many of my friends have stopped asking how I am cause my life is so consumed with cancer treatment I have little else to share. Besides treatment, self reflection, daily exercise and planning my wedding (on 27th Oct) I don't have much else to share..... This is my life atm and it consumes all of me! My biggest bug is when people say "u look too healthy to have cancer" or "ur looking so good, chemo seems to be treating u well". That makes me angry and want to scream...... People have no idea! Yes I look good cause I make myself eat, I drink plenty of water, I try remain positive, I exercise, I fight.......I am fighting this cancer. I wonder if I Will ever look at life the same again....... Silly - the drunk guy did make it easier and I did enjoy the wedding. I also agree this site us wonderful in cleansing, expressing, healing and growing 🙂 I know it has certainly made my life easier during my cancer experience. Rubes
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Deceased
Hi Rubes 1984 A cancer nurse once said to me - "we are good at making people look well". I get just so angry at all these people who come up to me and say "You are looking well", or this is the "best I have seen you fro several months". I had the experience of one friend, with whom I have lost contact, telling me how well I looked. Six months later she was expressing concern about another person, a mutual friend, and said "Geoff look spale and drawn, just like you did six months ago!" Go figure! People don't know what to say, and of course we are like Pavlov's dogs - we get rewarded if we are positive, so we give positive comments back to them. Sometimes I feel like screaming at people - I might look well but in reality I have been up half the night, I have had considerable pain, I'm sick of all these side effects, I hate hospitals and just occasionally I would like it all to just stop. Just sometimes I would like to be a grumpy old man. Cheers Sailor Every master and pilot prided himself on knowing exactly how much way his ship was making. He knew the ship, he considered the wind, he watched the sails, he watched the water. In fact, it was a matter which just could not be explained to the landsman. A good sailor knew his ship, and that was all. E. G. R. Taylor
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Yes! Yes! Yes - Sailor and Rubes. Exactly what I was trying to say. Then, when I say well, I feel like shit, they take it as having a negative attitude and no wonder I have cancer. HA HA HA!!!! Truly nuts 🙂
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If I was feeling lousy (which the chronic pain does 24/7 to varying degrees) and someone says I am looking good, I reply "Well, I am so glad of that! I wouldn't want to look how I feel!" (Referring to physical feelings, that is). I don't stay positive for other people's sake; I stay positive for my sake. If my path did not change in June last year, I would not be here now so despite the physical difficulties, I am feeling emotionally and mentally wonderful, though I do have down times occasionally. I don't feel that I have fought cancer. I simply make informed decisions, pray, do what I need to and leave it in God's hands. Then despite a bumpy path, I have a sense of peace 🙂
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Between surgery and radiation ,I started to go back to "normal"life a few weeks after the doctor said I ought . A friend commented that I was "doing really well". I was too stunned to reply because I was thinking "What would you know? I am actually hating what is happening and don't feel happy most of the time." I did know her intention was good .
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Hi Silly I think our outward coping and our inner coping are two entirely different things. We just tend to get on with life, looking good and strong to others, while crumbling, screaming, raging or blocking out thought inside. A comment on another website to my post said "Tough couple of people Pamela." I answered "Might look that way but we just plod through each day as it comes. Worse happens to so many; at least we are still here." Strength and warm hugs to you and all who need it, Pamela 🙂
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Super Contributor
I must say that finding so many worse off than me was a big wake-up call . I would never have had this if not for this site and other similar sites . In a way that is horrible because I don't want anyone to be suffering . It took me a long while to become positive and as with you ,Pamela , it was for me, not for others . It's too hard to live otherwise .
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Hi all, I was pondering this last night in a dreamy state while nodding off.. What I came up with is this: when people say/said that I looked well it was painfully invalidating and denying of my experience. It also served to shut-down any discussion of my experience that might've supported my coping (via verbalising), because it made them feel uncomfortable. The comments - say - came from people that knew or heard that I was unwell, yet they would insist that I looked well - surely they knew that looks aren't everything I spent my time wondering. It is for this reason that I began fantasising about the difference having something on the outside of me that represented my experience might make. I imagined that this would prevent others challenging my experience as it was all out there in the open for all to see and undeniable; I was already so tired and traumatised, I didn't have the energy to stake my claims with people that hjad more energy than me so I guess the reasoning was that maybe having something on the outside would have helped to alert others of my condition. You know, like some animals change colour to warn others of their internal processes. I need to stipulate here that, I did not wish for validation mind you, it was my experience that people went out of their way to invalidate my experience. I found this utterly insulting. exhausting and confusing. A simple analogy might go something like "Oh, I heard you bought a car. Well, I don't see it so I don't believe you did". This would be a bizarre statement right? That's what I felt I was dealing with. Additionally to this, it was often delivered with a tone of superiority that I had come to expect from people that were well. In that case the analogy would go something like "Oh, I heard you were unwell. Well you look ok, and as I actually am well, I have authority over you and what you are experiencing so you must be in fact well, as you look well" Please note, I am pondering these things over time, and, as time has gone by and I have moved out of the stress and anxiety of survivor-mode, my brain is recovering its normal discriminating faculties and I am able to revisit and dissect my many experiences with cancer. I have without a doubt concluded that the trauma of the cancer experience was not only the premature face-off with death and the existential crisis that came with it, a great part of the trauma (for me) came from seeing a side to people and humanity that I previously hadn't. Finally, I'd like to stipulate too that, I am not being negative in anyway, I am simply relaying my experience and perceptions. I of course know that people don't know what to say and that they only want to help and they feel uncomfortable and they want me to be positive and... blah blah blah.... Yes, I am aware of these points of view. Cancer is such a complex experience and it affects all areas and levels of a persons life and soul, I find it helpful and more to the point, interesting to explore the experience in all it's depths pains and lessons.
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Hi Sarah, I must admit that although still in the treatment phase of my cancer I have not been able to fully sit back and reflect on all that this experience has brought and given me Already though I can agree with ur experience (as is my experience) that cancer changes the way you view the world, humanity and all that is happening around you. Sometimes I looked at the world through naive eyes but now I am clearly seeing the world as it truly is and there are parts that frustrate me, excite me and plain confuse me. I am hopeful as times progresses I will learn more from this experience, grow and heal..... I guess that is what we all can hope for ourselves and each other. Thank you for sharing your experience, I do know how terribly damaging having ur experience invalidated can be. One such example is when a child falls over and starts to cry, their mother says get up that didn't hurt. Statements like these damage by making ur feelings and experience seen untrue, worthless and unimportant. It's such an incredible thing the power of words - they can make or break you. So why is it that people forget something so simple?
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Hi Rubes1984, As likely you know, going through it is unbelievable, there's just nothing like it in the world. "Sometimes I looked at the world through naive eyes but now I am clearly seeing the world as it truly is and there are parts that frustrate me, excite me and plain confuse me." This statement reminded me of another thing about cancer - the experience takes away your innocence, the "veil" is lifted and you are exposed to things that you didn't ask to be exposed to and weren't prepared for, so the unveiling is very sudden. There are so very many layers to the experience of cancer affecting all areas of life, I guess why it is indeed so harrowing. And, you are (pretty much) alone to process the experience. I share my experience like everyone else here: to find commonalities and uncover fundamental truths, and to articulate my own experience in search of meaning and empowerment for myself. Hopefully we are less alone through the sharing. Sarah.
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