My name is Margaret Rose and I am from England - my daughter was diagnosed with colon cancer in November 2004 - I have been looking into this site for about 4 months but for some reason or other couldn't quite bring myself to write anything - partly also because no one from the UK had ever written anything! On reading Susan's account of her daughter I felt compelled to write.
I will try and tell you briefly our story. My daughter had taken ill one night in June with severe pain which eventually after many investigtions (but of course no colonscopy!) and stays in hospital they decided it was Chrons Disease - this showed iteself by her getting abscess's in her stomach which is not uncommon in this disease as one of the factors is that the colon becomes ulcerated - after the 2nd bout in hospital with another abscess they decided to operate on Nove 8th and told us that they had removed about 20cm of her bowel (of course if they had know it was cancer they said they would have removed a lot more!) - on Nov 18th we were told the news that she had cancer and all 7 of the lymph nodes they took out were cancerous as well - which put her at Stage IIIc.
As you can imagine this was a terrible shock to us and not at least to the Doctors and Nurses as they had not diagnosed anyone before as young as this. We were soon reffered to a Oncology Dept where in late December she started chemo 5FU and Oxaliplatin (the latter drug was only given to her after much struggling by the Oncologist and eventual funding by an organisation because of my daughter's age - you do not normally get Oxaliplatin - certainly in the UK - unless it has already gone to the Liver)
My daughter actually sailed throuh her chemo which was given via a port in her chest -though on the 8th session of Oxaliplatin she did have a violent reaction so was not given the further 4 she would have had. It is now over a year since she was diagnosed and after one or two scares she is at the moment so to speak 'cancer free' - she is having a CT scan every 3 months and is due one just before Xmas - might wait and get the results after!
I have to refer to Susan's email about her daughter not wanting to get involved with this site or any as my daughter is exaclty the same - I have come to the conclusion it is just that they want to get on with their lives as normally as they can and maybe dipping in and out of these sorts of sites (we were told of Planet Cancer and she did actually get in touch with someone who lived in England age 26 but sadly he died (I may say by the time his colon cancer was discovered it was too late) is not always beneficial. I think maybe if she is doing well in a few months time I will suggest she looks into this site, albeit I know there is so much hope and surviorship to read about.
In finisihing I think Molly what you have done for young sufferes, in particular, of Colon Cancer is absolutely wonderful - and especially reading about all your Calender (Colonder in USA!) 2005 survivors has given me real hope for my daughter especially Erika.
If anyone would like to personally email me my address is
hannahmargaretrose@hotmail.com
With lots of love to everyone who reads this and
Wishing everyone a VERRY HAPPY CHRISTMAS
Margaret Rose
PS Our family is being genetically tested and we should know the results soon.