As I’m not working and am in limbo at the moment just waiting for my mastectomy and thinking of what I can do during the long recovery from DIEP immediate reconstruction. I am thinking of setting up a new website containing useful information for us breast cancer victims. I know this one is fantastic and without the invaluable help of Breast Cancer Care in general (especially the forum and the peer support programme) I would have been in a much more sorry state!
If anyone can help me with any ideas of information that can go on to be most helpful to bc patients. I was thinking of things like uk area-based consultant and plastic surgeon information (maybe even a ‘ratings’ or comments section). Collecting information from women age/type of cancer/type of treatment/success rates, having this displayed in some way so it is updated automatically. Links to other useful cancer info sites etc. Maybe you think another website isn’t necessary - or have any more useful ideas? Thanks for any feedback. Dawn
Hi Dawn
I struggled with practical things when I was waiting for my mastectomy. For example, I wasn’t sure what nightwear to take in with me or whether I needed to take a bra in for when I was discharged. I had lots of little worries I didn’t want to bother my bcn with. I got a lot of information off these forums - someone said Asda sell post surgery bras and I bought some for immediately after the op. It was such a boost for me to come out of the hospital looking “normal” with my Asda bra and softie! Then when it came time to get my breast form I had a few problems adjusting and again the tips given on this forum were so helpful. This type of information (and links to relevant sites) might be good to put on the website.
I am not too sure about having information about treatments and success rates because this could cause more anxiety for people. That is just my opinion, others might find this helpful.
Good luck with your mx and reconstruction and good luck with the website if you go ahead with it.
Love
Maude xx
We have found that there is a wealth of information in certain threads in this forum, for example “Advice on Taxotere”, and other less serious ones such as “What not to say”. It is useful because it is based on the experience of people going through it, so there is a lot more detail and variety of experience than could be realistically put into a leaflet.
The problem is that it is all jumbled up in very long threads, with quite a bit of repetition and lack of structure, so it takes ages to get through it. I think having somewhere that gathers together the information from these really informative threads and makes it more accessible would be very useful. It’s probably quite a big task, though.
Good afternoon Ladies,
I think it is a very good idea.
Just reading the forum gives loads fo helpful hints and tips - which in a more compressed form would be quicker to go through.
Keep up the good works and a happy New Year to all.
Helen