I have been with Cancer Connections since just after I was diagnosed with PC 9 months ago and I have found a couple of friends on this site. However I have found an American site that allows you so much more freedom and access to talk, no matter what cancer you have. The only thing you have to realise is when they talk about procedures etc it is what is happening in USA and we in Australia are at times way behind. I have found a lot of information that is helping me with my folfirinox side effects just through this site not to mention the conversations I have had and for those of you that have insomnia side effects, well this is what I have been going to www.cancercompass.com Maybe we can all help to make our own Ozzie site better with some of our help just by getting ideas & inputting them to cancer connections before we leave this planet. For the sake, hope, advancement in knowledge, treatment, care, understanding and our own special love. I will do what ever I can to help any current cancer person, as you are not a victim, patient or sufferer, you are still 100% a person. I hope all of you are currently coping ok and I give my love to each and everyone of you. We all need to be told we are loved, so I am telling you and I want you to tell others.
5 Comments
SILLY
Super Contributor
With my cancer I have seen where in the USA some are receiving experimental chemo treatment .As yet none exists that is successful for all with this cancer. I am happy that I am in remission and not in need of such treatment.There is a developing trend in the US for personalised treatment ,but only in some of their more progressive cancer centres. Some people with the cancer I have travel to other countries for newer types of radiation . One good thing in Australia is that we all can get treatment at the time we need it . Some in the US have problems with insurance ,especially if they are out of work, and have to wait longer.
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mazsa
Deceased
Hi Silly, Thanks for all the info on Lyrica & Endep. I know what you mean about the American chemo/cancer treatment and yes their health system is totally lacking in comparison to ours, we are very lucky in so many ways. I am on Fulfirinox & it actually originated in USA & it is the only chemo treatment that is extending my life as far as possible. I have inoperable therefore terminal pancreatic cancer. My comments bout this site were mainly stemmed from the easy use of the site itself in comparison to our own Ozzie site. I guess our site is more private but at times we really dont want that privacy. A lot of the time we just want to be able to talk there & then but to get the messages back takes ages.I actually received an email message a few days ago from Cancer Connections website advising me of a new message which I received from one of my friends prior to xmas. That is the sort of thing I am talking about with our site. Plus the one thing I have found with the USA site is I have received a lot more useful information re vitamins & herbs that are useful & helpful to me in coping with the cancer & fighting it and treating the side effects of the chemo. I am not knocking anything we have in Australia apart from the fact that our advertising/funding only covers the main/most common cancers as in breast cancer, prostrate cancer, lung cancer, skin cancer, leukemia. All of these cancers can be cured with lung cancer being the most iffy. I don't know what cancer you have. I do know there is no cure for pancreatic cancer no matter what we do or how early we find it. Pancreatic cancer is a death sentence. Does this site have a way of us being able to communicate like this with an answer coming back from someone straight away. No it doesn't. For each message you have sent me I have duplicates of the exact message in my personal email box all from this site. In fact one of the messages you sent me went to Admin & I received an email from them letting me know it went there. It's a good site just not user friendly. PS I can feel the Lyrica working already & I'm only on 25mg. So thanks to you I have gained something from this site.
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mazsa
Deceased
I am not a complaining person in general. but the one thing I do love about the American site is that I can just say what I am about to say. My sister in law died from a heart attack in 1994 her husband & my brother had a heart attack the following year & is still alive due to the little sort of pacemaker he has inside him, my sister in law to be died in 1995 just before my wedding due to lung cancer ( non smoker & non drinker) My younger brother had a minor stroke in 2000. My mum died from pancreatic cancer in 2002 my dad died after a complete laryngectomy due to throat cancer in 2002 from a heart attack, I lost a very good and close male friend to asbestos cancer in 2005. I was diagnosed with terminal pancreatic cancer which is inherited from my mum in June 2011, my brother who has the mini pace maker was then going through radiation for throat cancer which is all cleared but he can never have radiation again. My sisters husband has been undergoing treatment for prostate cancer, they also have a 20yr old son who is autistic and also has a very rare brain disease so he may never reach 21, my sister has also just been told that her diabetes two may be going to diabetes 1. Hell I don't complain and why the hell should I. There are a lot of people worse off than me. I fight for my life and I fight for everyone else's life. That's just the way I am. I will help and give advice to anyone on this sight if I am able to do so. I will fight for all of us in one way or the other. I hate CANCER and I will fight it no matter what. Even if it just means some of us talking about it or saying what we really want to say without someone trying to stop us. We all need to just let it go at one stage or the other. and that should be one of the main reasons for this site. Cancer puts us all under different stress, emotions, pressure plus the side effects of what ever treatment we are all on and we all need to be able to release it and the only other people that will really understand what we are about are other people with cancer. Every now and then I really need to let my emotions loose, so I sit outside and cry by myself. All I really need to do is put it into words and send it off into cyberspace. Then you can all read it and maybe let yourself loose your emotions the same way and we can all start talking. May god bless you all and may you remain healthy for as long as you are able to, may you all keep fighting it until the end finally comes, for those that have the end close to them, you are loved by so many people. Every person that has cancer is close to you and every one of those people feel for you and love you.
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SILLY
Super Contributor
Your family seems to have had a big dose of medical misfortunes but no family seems to escape cancer ,it seems . I am sorry you have a bad cancer. I have read blogs about it , on this and other sites ,so learnt a little about it. I agree with your other comments too.
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Not applicable
Hi All. We recognise the complex and often challenging cancer experiences that Cancer Connections members have been through and encourage everyone to continue to share and discuss these issues, stories and experiences. We would also like to acknowledge recent comments regarding the current level of usability of our site and invite you to contact us directly if you are experiencing any ongoing issues that concern you. A major revision and update of Cancer Connections is scheduled for completion in the next few months. Please contact us at admin@cancerconnections.com.au should you wish to bring anything to our attention. Kind regards, Felix & Kate Cancer Connections Admin Team
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