It does, doesn't it. Fear is right up there in the clouds and so many people live with the fear of cancer without ever having it. People who have developed it feel they can't talk about it, and friends sometimes drop away as if it is catching. It seems to take courage to talk about it and in many instances people turn away and don't want to know. Yet out in the big world there are other illnesses just as dangerous and terminal and we barely give them a thought until they hit us. We can have heart attacks, strokes, kidney disease, liver failure... and Oh, the list goes on and on and yet do we live in fear of these things? We don't even live in fear of car accidents. We go out every day in our cars and face the reality that we could so easily have an accident, and yet do we think seriously of this every time we turn on the engine? I had a friend who went into hospital for a knee operation and, thanks to the anaesthetist she developed Golden Staph in her lower back. It was internal and it took ten years for it to kill her!! We go into hospital and we believe we are safe - yet we are no safer there than on the roads or even in our own bodies. So why is cancer such a fearful thing? What makes it just the worst possible thing that people can imagine happening to them? Why would someone opt to die rather than face it? Interesting isn't it - any ideas?
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Jules2
Super Contributor
Hiya Darkiescorner Firstly i think people equate cancer with death and that creates fear for them. For some time i have been thinking about evil things in the world and of course you come up with the usual stuff like money etc..., however, i reckon that fear rates as no. 1 on my list. It is an evil insidious thing that causes so much damage to individuals and communities etc.... etc.... I guess some are just so afraid that they dont want to face it and then their fears are realised? I am not sure on that one as its not in my nature to not face things regardless of how horrid i find them. So, thats my intial thoughts ... Regards Julie
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HI Julie, I think you could be right and like you it isn't in my nature not to face things no matter how horrid as you say. Y'know I reckon I could be far more fearful of living in a war zone than having to face cancer again. Maybe it is fear of the unknown - and on top of that of course, there are all the terrible stories of people who have had cancer and have died from it. There is not the emphasis put on just how many of us survive it and go on to live happy normal lives once more. At lot more should be spoken about survival and how much it can change a life and make it even richer even tho it is so horrible at the time.
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Jules2
Super Contributor
Hi Darkiescorner We often fear the unknown and thats what cancer is all about really. Least for me it is/was? I think it also comes down to what cancer is deemed to encompass. I find myself in a rather strange situation. I had cancer 21 years ago next month. I didnt have treatment other than surgery as there was no treatment for the cancer i had (amelanotic melanoma). This time around i am doing chemo and radiotherapy and i had a stereotypical view of what chemo would involve and also radiotherapy. Now i know first hand! (least for the chemo bit) People also have their own views on what cancer people go through and am betting from person to person thats going to be radically different depending on their knowledge. Or it might depend if they have kept up with current trends etc... I totally agree, there should be more emphasis placed on those that survive. It gives others that are diagnosed "hope". It might also impact on earlier detection for some also. Education is the key? Rgds Julie
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I reckon Julie that if fear could be taken out of cancer - well a lot of it - that more people would go and be checked for it much sooner. In a way I feel that it is fear that so often leads to people ignoring the signs and letting it go on for far too long - so in effect it is the fear that kills just as much as the cancer can. Yes education is the key and also more people who have had it talking about it. Rgds Carolyn
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Jules2
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Confirms my thoughts that "fear" is evil 🙂 ... and yet being diagnosed with cancer i would think would make most fearful (it did me, for a bit). Interestingly i read a book years ago when i was first diagnosed and it was about cancer patients in america that went on some sort of retreat. When they first arrived they were asked to depict in simple pictures how they viewed their cancer. Those that would depict the cancer say as fire and they were paper, by the time they left they became the fire and the cancer was the paper. I think its this sort of mentality that makes a difference to me in dealing with all of this. I know others think differently but i guess we all need to find what works for us. Julie
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Hi Julie that is so interesting a but the 'fire and paper' and yes, I can see how it would make such a huge difference to you when reading it. I wish there were more retreats like that accessible to everyone. What sort of cancer are you dealing with at present? Caro
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Jules2
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Hiya Caro ... It is squamous cell carcinoma in the tongue and throat. There are many retreats around although i am not sure they employ the same tactics as the one that i read about in america. I also think that most retreats are fairly pricey and it is pretty expensive having cancer so possibly out of reach for a lot of people. Julie
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Oh Julie, I am so sorry, that is a nasty one to have because it interferes with eating and talking and all the usual things we do and I can imagine can make you feel somewhat claustrophobic. I only just recently read of someone else with the same thing. What treatments are you having? Yep, turn it to paper and become fire.... you can do it (((bear hugs to you)))) Yes there are a lot of retreats but all so expensive, and, as you say, having cancer can be so expensive too that it can rule out the possibility of being able to afford to go to one. Well I like the fire and paper approach, that makes so much sense to me :) Onward and upward Julie Caro
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Jules2
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Hi Caro ... Thanks re it not being a nice cancer and yet i view it differently. It is treatable and for that i am very thankful. The first time i was diagnosed with cancer was 21 years ago and that cancer (amelanotic melanoma) had no treatment available except for surgery and thankfully and obviously? it worked. I think i must be the eternal optimist for when i got the phone call after surgery for my first cancer and they said 3 out of the 16 (i think) lymph nodes were infected and that wasnt good news, i was like thanks i will take those odds and i reckon thats pretty good! They could have said all 16 were infected! I think our journey comes down to how we view things and if that doesnt make us happy then we have to change that view and we have the power to do so! It is like i ran into a friend the other day and he is a quadraplegic and was moaning about his electric chair that he rides around in. I referred to it as his "new best friend". he looked at me and i explained that i know what it is like to have choices that i dont want but we have to make the best of those choices regardless. I asked him if he didnt have the chair what would he be doing right now? and his reply was "lying in bed". I know what its like to have limited choices and to not have the choices that i want, however, we have to make the best of what we have. Least that is how i look at it and yes sometimes i resent i cant have the choices i want or used to have. :) Julie
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Jules2
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ooops i got on my soapbox and forgot to tell you that i have had chemotherapy and am about to start radiotherapy and the latter is not thrilling me at all.
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Ah Julie, you are one of my kind of people 🙂 I would have thought "Gosh! only 3? that means that 13 lymph nodes are okay" Yes it is all about attitude and how we develop as we face various traumas. Life if full of drama one way or another and sometime, no matter what I am only thankful that the things that happen to us are in a country that is not war torn and does have hospitals available. So many things can get us down if we let them and so often we do have to change them around to see the advantages of them. I am so glad this cancer is a treatable one, that is wonderful and I am sure, with your attitude it will soon be defeated. More power to you :) Caro
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Hahaha love your soap box - I have one too :D Hmmm... I can understand that radiotherapy would not thrill you - erk! But then again, so glad the chemo is behind you. How long with the radiotherapy go on?
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Jules2
Super Contributor
Hi Caro Thank you again re the more power to me. 🙂 It is about getting our personal power back. We lose so much personal power when we are in the system. I am human and there have been times when i have cried and felt down about things, however, in the end its up to us to dust ourselves off and get in there and get on with life as it is. This time having cancer is different and in some ways its easier and in others (treatment) it is way more difficult. My radiotherapy begins next week along with cetuximab and that will run for 7 weeks. The side effects from the radiotherapy are not nice, however, its going to help eradicate this thing for good. So thats the focus after addressing the bad bits. :) Julie
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Yes well the good thing is that in 7 weeks it will be over and you can start seeing the light at the end of the tunnel - in fact it must be just about showing already? Just a small dot? You have the survivor instinct and that is what counts more than anything. I can imagine the treatment is not easy, I was able to bypass all chemo and radiotherapy with the breast cancer as I decided that the mastectomies was the best way to go (much to my surgeon's relief) of course it was hard - but hey! I had a life out there and it was not going to take up all my time and my life as well! Just think, before Christmas it will all be over and you will be just 'keeping an eye on things"... Keep up the power, I know what you mean about losing it when you become part of the system, so many others do the decision making and leave us feeling useless. No, no matter what you are your own architect and it will be you that takes all the best out of the treatments and applies them to the cancer to kill it. You can do this BIG TIME 🙂 xx Caro
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Jules2
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Hiya Caro No the light isnt there just yet. Mainly because i know what i am facing as things go further down the track and i am focussing on dealing with those if and when they happen. Radiotherapy for head and neck cancers is pretty invasive and has quite a few horrid side effects. I find myself knowing these things and yet i am still signing up for this gig. To me its quite bizarre in some ways as i know i am going to be in lots of pain and end up back on peg feeds, i know i will lose weight, i know my mouth will have ulcers and my tongue will be swollen along with a sore throat. However, thats my gig and do it and face it i will. Unfortunately, with radiotherapy the side effects seem to last a little bit longer after you finish. :) I can do this and yet this time i am break things down. ie I take each day at a time and deal with one thing at a time. If its not the day to deal with something then i dont. That helps to keep me sane and also maintains my energy levels somewhat and it also helps my emotional side to cope. I found the system more disempowering today than it was 21 years ago. Although perhaps the cancer i have this time has impacted on that. These are the things i would love to see being addressed by the medical fraternity and changes made. It wont take much on their behalf and other than educating those who work in the "system" i cant see it costing a whole lot of money and yet it would make such a huge change to patients and ultimately possibly impact on their survival rate. Most importantly it would help for them to have a more empowered journey and easier one. I am fortunate, i have a huge network of friends and family who have supported me. I am eternally grateful for this support. I have one friend who drove twice a week to see me in hospital and that entailed an approx 400km round trip. Amazing!!! I am just chuckling to myself here as this morning i seem to be finding all sorts of soap boxes to get on. Sorry everyone for taking up so much space! Julie
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All your soap boxes are mine too and yes, finding ways to help other people in the system - that's such a big thing. I have sent you an email telling you about my own cancer site. I ran a site in eBay Chinwag for three years and when they changed their forum I got a site of my own up and running, although I do keep one going in their 'Community Spirit' forum too. I am not breaking any rules talking about it here as Cancer Council Tasmania are planning to connect the Corner to their site and the Corner is on www, so it goes all over the world, which means we have had some interesting people in the past arrive and join us. Oh I don't envy you that treatment, but as you are the one that has signed up for the gig then you are in control of it and that is the main thing isn't it. How wonderful you have so many friends and family that are supportive, so many people find themselves isolated and left behind when cancer happens and it leave added confusion and pain for them. I think you can take up as much space as you like here - you can on the Corner too :) Caro
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Jules2
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Thanks Caro i will take a looksee at your website.
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