tag:blogger.com,1999:blog-8749436707205297492.post6337653711013893176..comments2023-05-19T15:30:01.828+01:00Comments on Chris's Cancer Community: Do you really want to know?Chrishttp://www.blogger.com/profile/05208572330195914101noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-8749436707205297492.post-69998312331550747172013-10-04T12:58:47.413+01:002013-10-04T12:58:47.413+01:00Hi Angela,
Firstly I would like to thank you for...Hi Angela,<br /><br />Firstly I would like to thank you for taking the time to write these very personal comments. One of the biggest values in this blog is the sharing of experience! We can all learn so much from each other. I am enjoying your positivity, and I agree with you entirely about your medical team.<br /><br />I have entire faith in my own team, which makes things much more comfortable for me. I have been fortunate that I have had the same people for 6 yrs, and they understand me as a person, which is key in the treatment process.It is so good to hear that you are mentally prepared for the next step of your treatment, which I know, can be very tough.<br /><br />Unfortunately, it is not always good news that we hear. A cancer diagnosis is both difficult to give, and receive, and each case is unique. How we deal with things is very individual, with no right or wrong. Just what feels right for you. There are many times when things do not go as well as expected, which is as much a part of the story, as when things do go well. How much of each we listen to, is again our own choice.<br /><br />I understand your comments about negativity, and you have done what is best for you. I hope that you find this blog to be positive for you, and look forward to welcoming you back soon.<br /><br />Many thanks for your comments and I wish you well with your personal journey, Angela. Chris Chrishttps://www.blogger.com/profile/05208572330195914101noreply@blogger.comtag:blogger.com,1999:blog-8749436707205297492.post-13890283793155787832013-10-03T13:45:45.890+01:002013-10-03T13:45:45.890+01:00Hi Chris,
I understand everyone's concern, w...Hi Chris, <br /><br />I understand everyone's concern, when I was diagnosed in March it was information overload and very scary. However now that I am several months down the line and just about to start a different chemo I am on the side of knowing the possible side effects of the drugs. With my first lot of chemo I reacted to almost all of the side effects, good or bad and I survived them although they were not successful against my tumour. Thankfully I had an operation in July which removed the tumour and good margin and there are currently no signs of any cancer in my body. I start the new chemo next week and yes the side effects do not look great but I managed to get through the first lot of intense chemo so I have high hopes that I will get through this lot. My consultants have been brilliant as have my nurse specialists, yes you really don't want to hear all the doom and gloom but it is their job to prepare you for any possible outcomes. I know that I have a long journey to go and that some days will be harder than others but I am mentally prepared for the continuation of my fight thanks to the professionals involved in my case. I have 100% faith in their abilities and the care that they have shown me. My heart goes out to anyone though who has not had the same care from their consultants as I would have thought that this is a vital part of their profession. I am however a little disappointed with all the negative stories told about people who have not been successful in their fight against cancer, it would be nice to read some positive inspirational stories instead. I had to unlike the charity for my type of cancer because it seriously affected my state of mind and I can't afford for that to happen. I wish every cancer sufferer a successful journey and a good future. Take care, AngelaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8749436707205297492.post-88989808660975737832013-09-30T11:37:55.229+01:002013-09-30T11:37:55.229+01:00Hi
Many thanks for your above comments. Yet more ...Hi<br /><br />Many thanks for your above comments. Yet more examples of poor information giving. I agree entirely about the time issue, with your Consultant. People feel very rushed, which is not ideal when talking about a life threatening disease.<br /><br />I have also experienced clinicians talking in such technical language, that the patient will struggle to understand what is being said! Unfortunately, it seems that every talk they have with patients, must be tailored specifically for that patient. A skill which in many cases is sadly lacking.<br /><br />Having had many conversations on this subject now, there appears to be a 50/50 split. Some of us want all the info possible re side effects and others don't.<br /><br />Many thanks for sharing your comments, as this is what the blog is all about. I am very glad that you are enjoying it and look forward to welcoming you back soon! Chris Chrishttps://www.blogger.com/profile/05208572330195914101noreply@blogger.comtag:blogger.com,1999:blog-8749436707205297492.post-13775015500820838972013-09-30T11:26:59.940+01:002013-09-30T11:26:59.940+01:00Hi Kaz
Sorry to hear all about your problems! You...Hi Kaz<br /><br />Sorry to hear all about your problems! Your example is exactly what the issue is for the patient, if you don't have all the information. How exactly can you make an informed decision if you don't have all the facts?<br /><br />That is why I personally, like as much information as possible, however I do understand that too much, can be just as confusing. <br /><br />My own case was more straight forward than yours. If I didn't have the treatment, I would be dead, so no choices to make really. I do have a reasonable quality of life, but with many side effects, I wasn't told about.<br /><br />Your situation is exactly the one I was worried about if they only give you certain pieces of info. Unfortunately Kaz, your own example, is still so common, and it is a big concern to me that people do not understand what may happen to them as a consequence of their treatment.<br /><br />As we both know, a cancer diagnosis is an emotional time, and it is not always the right time to make life changing decisions, but there are constantly time pressures.<br /><br />Thanks for sharing your experience with the readers, and hopefully through our work, we can improve things for others. Chris Chrishttps://www.blogger.com/profile/05208572330195914101noreply@blogger.comtag:blogger.com,1999:blog-8749436707205297492.post-73729651445491286522013-09-29T17:20:47.340+01:002013-09-29T17:20:47.340+01:00I would definitely like more information. I always...I would definitely like more information. I always feel as though my consultant has time pressures and the more questions I ask the more stressed he becomes. For example - he has never shown me any pictures of ct scans or pet scans yet other consultants involved have put the pictures up on the screen and let us see comparisons over time. The wording of explanations can be vitally important e.g. You have a new problem in the abdomen, next time he says small intestine, next time he says bowel. When I try to clarify I don't seem to get a clear explanation.<br />Side effects I am not as keen on having full details - I don't want to worry about things that may not affect me. <br />Thanks for your blog. I really appreciate itAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8749436707205297492.post-46305688793973222152013-09-29T12:16:53.358+01:002013-09-29T12:16:53.358+01:00I feel very angry that I wasn't told about all...I feel very angry that I wasn't told about all the possible side effects of my treatment for womb cancer. I am now 3+ years down the road from finishing my treatment (surgery, chemo & radio) and have severe long term side effects that impact on my quality of life. Had I known then what I know now, I might have questioned the need for all the treatment.<br />How can we, as patients, give our consent for something if we don't know the full facts?<br />My quality of life now is far worse that it was when I was diagnosed - I sometimes wonder what was the point of having the treatment!!!!!Kazhttps://www.blogger.com/profile/12798944158726700442noreply@blogger.comtag:blogger.com,1999:blog-8749436707205297492.post-81431545330973621832013-09-29T10:37:30.450+01:002013-09-29T10:37:30.450+01:00Hi Catherine
Having thought about this topic a lo...Hi Catherine<br /><br />Having thought about this topic a lot since the original comments were written, I am sure that there is a lot that we are not told about either our diagnosis, or treatment side effects.<br /><br />It is a good question you ask also. "How much do we need to know?" I guess it is a delicate balance! ChrisChrishttps://www.blogger.com/profile/05208572330195914101noreply@blogger.comtag:blogger.com,1999:blog-8749436707205297492.post-35430875743431665962013-09-28T19:10:07.933+01:002013-09-28T19:10:07.933+01:00To be an empowered patient I wonder how much we ne...To be an empowered patient I wonder how much we need to know - I'm not exactly talking about side effects but more the nitty gritty of diagnosis and findings. Along with some door effects, I have the impression that this isn't fully revealed either. Facing Cancer Togetherhttps://www.blogger.com/profile/10399771668991931841noreply@blogger.com