Hi all, I've been watching and listening and I'm so deeply touched by the stories of the heartbreak that has comes with the illness (as if the illness isn't enough). I went through the same, and saying it was hard just doesn't express it - it's confusing, shocking and more. How's this for a break up line: "It's got nothing to do with the cancer, it's just that we don't have anything in common anymore, (now that you spending so much time at hospital)". I haven't had that exactly, but it encapsulates for me, the way people can twist their words, almost thinking that you not human enough anymore to see through them. I feel like I got that kind of thing a lot, it's really insulting. TJ, your tentativeness to post about this is noticed and understood and I just want to say, don't feel like you have to hold back, we all understand here. I understand when you just cannot find the right words to say what you have experienced, and you even wonder if it's better just to keep it locked away because it hurts so very much, and anyway, you are busy tagging along trying to keep up with wherever life wants to take you next. In my experience, it has been better to let it out, explore it, and discover along the way that you are not alone in the experience, and that unfortunately, it just comes with the territory of the illness. I don't think there's a lot more I can add to AmandaC, CarlC and everyone, I back everything that they have said. Thanks for sharing your journey with us. I hope this site can give you some strength. Our heart goes out to you xx ... View more

Hi Maggie and all, I would be interested to hear other peoples experiences on this. Personally, I inevitably kept these details to myself when it came to employment, as my experiences when I had disclosed in the past, were less than ideal. I have heard of others though, disclosing the information and doing well. My friend that I think of in particular, found that his boss had been through the same cancer, and they formed a close bond. I now work for myself. I've found avoidance to be the best strategy yet 🙂 ... View more

But, having said that - how do you take things in your own hands when you cannot just do the basic things, like, just concentrate on a tv program, feed yourself etc, because you are a fearful, worrying nervous wreck. It's really tough. ... View more

Hi Carl, I've done the antidepressant thing (it's all the rage these days!), and it helps definitely when you just cannot turn things around, turn the momentum around. I am doing what I can to network with others based on commonalities, also with others that have been through "stuff", and where there is a level of empathy and understanding. I am currently also seeking a support group to attend. I've found that I've just had to take thing in my own hands, it's been really lonely, and stressful, but I've felt I've had no alternative. ... View more

Hi All, Lonelyangel, it's like hearing my own voice. I have had cancer in my 20s (Hodgkins), and in my 30s (thyroid). I am now 39. It has been nothing short of hell, and I don't mean just the treatment. The lack of support I experienced was alarming and traumatic. I am very sure it contributed totally to my level of stress, and recovery. I believe that I have lived in PTS for many years, and I am frequently living in a dissociated state. My brain just couldn't cope with the situation. I can see something similar in you; you are not alone. I live now, a reasonably good life and all, building my own business, rebuilding my social life, planning an art exhibition, and helping others. I live though with the memories of abandonment and cruelty, of neglect and ignorance, from family, friends, colleagues, and the community at large (I found no effective support anywhere). It is (still) very painful when my mind lapses, and dwells in that general area, but it's also something that I try to face, and "deal" with. Meditation and fun/laughter is good. My perspective is less allowing than others, I see it's all well and good to say "people don't understand.." etc, but, I believe there's something more deliberate to the actions of many, and I have come to associate it with the animal instinct of survival, to put this idea simply: I have come to believe that some folks out there perceive us as genetically weaker. I have also come to believe that, part of the trauma of an experience such as ours is that, we have witnessed firsthand this "unpalatable" side to humans, and it has invariably shattered some of our illusions of bliss that we were once existing in. How do we go on, now that we see so much? That's been a hard question for me (and one that Jackson Brown tried to answer ;). Some folks here haven't had the same experiences as I have (abandonment etc), and I just cannot relate. I can only fantasies on how different my life would have rolled, had I had the support. Our lives and experiences as people are all so individual, my brain struggles to understand why some person has help, love and support when I (and others) have had a lions share of lack(!!). So, that's my bit to share. You are NOT alone, you are NOT going crazy. You probably are though, very stressed and freaking out; you have a lot on your plate, and it's understandable. ... View more

I agree, CarlC, take all the help you can at this time. Your poor brain and spirit are no doubt fighting hard against bombardment from everywhere. Take this for a while and have a break - you deserve some relief; it will do some of the work for you. It may also protect from creating unhelpful connections now, that will be difficult to divert later. Most people just wont get it, no. We get it here though, you not alone.. My thoughts are going out to you...... ... View more

..can I just add, I discovered along the way that feelings are apparently hardly ever logical. ... View more

"What made it worse for me was hearing all those other cancer stories about people having wonderful support from their families and how much it helped them. Salt into the wound!" Ha ha, that's funny Matsy - it's soooo true!! and, if I don't laugh, I'll cry... I felt awfully trapped with these intense and new feelings as well; they were not very comfortable feelings. I felt that if this kind of resentment, envy, or whatever, was uttered, I'd either get slammed by your inner critic, or judged by others outside who make some kind of assessment about why you have the illness in the first place... To give and example, I hated seeing all the publicity about (our dear) Kylie suffering from cancer, and how brave she was.... It was such an (insulting) contrast to my own reality, and others that I knew who were out there, whereby we couldn't make it to the shop to get basic foods, or afford a wig, let alone fly to the Bahamas for our recovery, or have the whole world sending good wishes, support and flowers!! Boo hoo, don't think I ever got flowers.... .......If I could've zipped off to some luxurious paradise, I would surely have been so very brave too!! 😉 I felt trapped as any attempt to express these feelings to 'normal' people just would've come out as unsympathetic to another persons situation, or worse. I think that our experience unveiled a new perspective on life so very suddenly, and without any graduation to give us time to adjust, resulting in a huge shock. The emotions that follow in response, are very overwhelming and confusing to deal with. And, unfortunately, it's all in one's own head only! Sadly, cannot share or compare notes with others.... only adding to the confusion and isolation 😞 Yes, that's why well done to us for getting on to this forum. Sorry, I'm a bit off-topic now too...... ... View more

Hi Richard, I didn't have brain cancer but your frustration resonates with me. I have awful experiential memories of people assuming I was stupid, people talking over me, being bullied etc, etc, and general feelings of being overlooked and cast to the margins of society post cancer treatment, and beyond. To me it seemed as though I was in a jungle and it was pure and raw survival of the fittest, and I was going down. It's been really difficult. To just mention it now opens the floodgates a bit. I still struggle with terrible feelings toward my family that basically abandoned me, and the rest of the family who apparently couldn't muster up a phone call or a word of support in my general direction. To say it's difficult is just too simple a word to encapsulate the painful jumble of feelings... Anyhow, so I'm hearing you. We get on best as we can.. It brought great relief for me to read some of the experiences on this site - I now know that I'm not alone in my experiences, where before I thought it was personal, and that people (family/God/the devil) had a kind of vendetta against me... It's a good start for me. Re the ABC program, I watched this also, and could relate well to the - being out of your mind - bits and being perceived completely inaccurately. I put it down to trauma as well (as chemical effects from chemo). Personally, I've been hugely traumatised by the experience, and as much by the having to cope along the road when I was plain mental with the stress of my own survival. I am quite sure I have had several mental/emotional breakdowns during my journey. I thought I'd share with you that you may feel less alone also. ... View more

I just had a look at Dorothy Rowe's "Guide to Life" and "The Denial of Death" by Ernest Becker. They are both themed in particular psyche states, such as depression. Thanks for the pointer :) ... View more