has this all got a bit too complicated now or are you poorly hun?
No, I’m well! I got half way designing it, then went back to work so it took a back seat! Will do some more on Part I of the project next week!!! It may need to be done in stages to keep it on the free software initially!!!
I will do something though. I am too curious!!
Hi Flora
you have such a healthy attitude - I’m all admiration. Will do whatever to support this research
xx monica
I’d also be curious as to what profesion people are in…i thought my cancer was becuase of the pill, but not so sure now…homrmone negative, no family history, i know people are ploughing money into things like this, but i can’t blame it on the pill, red wine, cheese etc etc lol would be interesting to see what we come up with… x
Flora,
Admire your intentions, but don’t forget about the Data Protection Act.
Unless you are happy you can comply, best not to do it or encourage BCC to do it on your behalf.
To be frank, it won’t achieve very much. Everyone is an individual and finding out what happens to most people doesn;t really tell you what your own experience will be.I frequently see posts asking questions such as “how long before my hair falls out?” or “how long before my hair grows back?” and the answer has to be who knows. Some people get on well with a cold cap during chemotherapy and just experience a little bit of hair thinning, while others go nearly bald.Some have terrible skin problems during radiotherapy.
Most will be happy to endure short term problems if the treatment is working.I think you just need to be aware of the range of possibilities (and factsheets are best for that) so there is no alarm about symptoms and you have some guidance about what to do to help yourself.
Holeybones.
Hi Holey
I won’t be asking for any personal information, so DPA won’t come into affect, and it would be a non-scientific poll, not anything overly serious. It will be self selecting and not randomn or compulsory, so really is just there to get a very informal feel for the more common reactions.
Completely understand everyone is different - am just interested in where the majority lie. I suspect there are more people out there with mild symptoms that strong ones and I’d like them to come forward! But I could easily be wrong!!!
It will come with a disclaimer at the front to explain it is non-scientific!!
Like holeybones I have huge reservations about this. The only respondents will be members from one forum, so it will hardly be representative. There is also so much info of this nature already available here-generalising about things may not be too helpful, and i fact negate individual experiences. For example, I had no problems with taxotere, but suffered agonies with capecitabine-bet not many people share that experience! If only posters used the search favilty before jumping in with questions, they would often find the answers they need-now that would be useful, and save respondents repeating info which is already readily available.
I don’t know if it is relevant that I am a librarian, so am trained to view information objectively, and see data as just one source, and understand that all data and information is biased in some way or another. Just as on here, we discuss what happened with us - our personal and biased experiences, both to warn and reassure others and to feel a connection to others who have experienced the same.
I understand it may be easier not to repeat things to newcomers, but it isn’t just about the information - the BCC fact sheets have enough of that - we come on the forum for the connections and feeling less alone. So you have to welcome new people just starting out, even if they do ask the same questions that have been asked a million times before. It doesn’t matter, it’s about so much more than the information.
Likewise, this poll would just be another way of getting a feel for how common some of the SEs are. No, it won’t be representative, and neither is this forum. There are hundreds of people who never come here, many others who just read and don’t post, and really only a small proportion of us that choose to chat. As I said, this is not aiming to be scientific or to be “published” like a proper study, it is just an informal poll.
You can take or leave the results (if and when I finish it and come up with some!) and use your discretion about how you interpret them. I trust in people’s intelligence being able to make up their own minds about these things, given an explanation about how the data was collected.
ElaineD I think when the newly diagnosed find this site the just want to blurt out their questions, and that is the idea of forums. I have used this forum since i was dx back in Oct 08, but it was only a few months in that i ‘went looking’ I would never want anyone to think ‘they couldn’t ask’ just because it might have been asked and answered before there are always people willing to offer their advice
rhian