hi Cherrybird - what a great name! I am a 3 year survivor of bowel cancer and have a great prognosis so far. that doesn't mean that I can't empathise with you about what people say - even with the best intentions. I'm glad that you had a great night and hope that your sister did as well despite her difficulties. What a hard slog for you both. The gentic thing is odd isn't it. Both my parents had bowel cancer (are still going strong at 84) but mine was a different type. Wouldn't you know. Keep the blogs coming. Samex ... View more

Julie, How were you involved in the cancer centre?(You've probably mentioned it before and I've forgotten) Which one is it? Re - narratives. I just read a collection of essays that were published by amateur writers based on the theme of "Flags" (not related to Harker's idea at all but just an example). I really have no idea how it was published or how the stories were submitted, but I may be able to find out. I think that this idea has an enormous amount of merit but I really have no idea where to go from here. We actually have so many narratives already written that just need editing and tweeking. I know thay do an awful lot already but could the CAncer Council have some role in this? Some more thoughts. S ... View more

Narrative is an extremely powerful tool. I agree Harker, that a bunch of whingers would get nowhere but a series of stories may enlighten people to the "unseen" problems that cancer patients face. This would perhaps open up the enormous range of issues that are faced by individuals. Each of us has a different focus but there is such a similarity in our stories in that at some point the system has let us down to some degree. Perhaps that is too strong, but to take Kate's words from another discussion, to some extent we have all had a time when we have felt "set adrift". I feel that there is potential in this but wouldn't know where to start. S PS Sailor, have you started something here? ... View more

Hi Jill, I know that this is when you need your friends more and that this is when they move on a little. My good friend(who I have mentioned before) often used to just ring and ask if I had time for a coffee or just a chat. I tried to always make the time. She then was there for me when I became ill and has continued to be so. Just as you asked for help before, remember that those people are still there and maybe just need a little reminding. They may surprise you in how quickly they come to your aid. I can't imagine how hard receiving that piece of paper was for you. Take care of yourself and the boys. S ... View more

Oh, Alana, Just when you thought that you would be able to deal with the world. Sometimes we can't just 'stay strong' and something has to give. Try (I know this sounds a little trite)to give yourself a break to enable to, if not one step ahead, then at least keep up with the pace. My heart goes out to you. Hugs, S ... View more

Harker, I think that is a wonderful idea but where would we start? I know that the writing has helped me enormously to tangibly reconstruct the confusion of thoughts and ideas and allowed me to organise them in some way. Do you envisage that the writing would be along the lines of the expressive writers' group or more of a collection of narratives outlining our own peculiar experiences and the difficulties we as individuals experience/d? This could be a powerful form of advocacy. SAmex ... View more

Not quite sure what to say, but please be assured that so many will be thinking of you and your children. If the volume of compassion helps in any way, then perhaps you may find some solace. Take care, Samex ... View more

I couldn't agree more. My physical treatment was beyond reproach. My onc answered all questions and is a very patient and understanding man. My GP was also understanding and considerate during and has been after treatment. The nurses were great at the oncology clinic BUT I never knew about little things like "Look well feel better' days. I was well informed of the physical effects but the psychological effects were NEVER mentioned. I just thought that I was a wuss for so long and that if I could survive chemo then what was feeling a little bit sad all about? My post treatment struggle has been enormous and I didn't know where to even start until I found the support here. And I only found this site by chance - googling out of desperation. The nurses are so stretched for time and physical and emotional energy that it is no wonder that they have difficulty dealing with the issues other than our physical weel being. Is it the perennial funding issue that there aren't enough bodies to go around to inform people of what is available? The experience can be such a lonely one. S ... View more

Hi Willow, I agree with Sailor on the counselling idea. My sessions have been really helpful in that I no longer INSTANTLY jump to the wrong conclusions and I am beginning to find some peace in my life.I initially felt that I was weak to go - you know, we should just tough it out. But now I reealise that in some ways the finding the right balance is the tough thing to do. While my prognosis improves with every month, I do still find that I am terrified of odd pains. And here seems to be the place where you can express these fears as we all understand to some extent or another. I was only questioning myself today about whether this site makes me keep thinking about cancer or whether it helps to voice my fears and concerns. I decided on the latter - and here I am tonight! It is also so difficult to fit everything in when we are working. If life was a juggle before, it is even moreso now. And the psych says I need to take a whole day for myslf every week. AHhh. When I see her this week, I think we will have to compromise to a day a fortnight! Anyway, enough about me. Never feel that you shouldn't write/post. Everyone's thoughts and feelings are valid. That's what's so good about here. Take lots of care, S ... View more

Hi Wapwap, I am 3 years out of bowel cancer diagnosis and chemo and I'm doing fine! I thought you might need some positive feedback. PLEASE make sure that you keep doctors etc informed of side effects especially the tingling - neuropathy - in her hands and feet. Mine was quite delibitating and it has lingered to some degree, but I am still here. The doctor can lessen the dose to help these side effects. I had my chemo dropped by 25% eventually as my body couldn't handle it. Remeember to take some time for both of you. My friends used to take me for "airings". Just a short drive to the beach or somewhere for coffee which gave me a change of scenery and some fresh air. Have someone take you somewhere as well. Take care, Samex ... View more