I was a caregiver this year to my sister who was diagnosed with tongue cancer. It was rather sudden and very alarming at how agressive both the cancer and treatments turned out to be. She completed her treatments (surgery, free-flay reconstruction, radical neck dissection, radiation & chemo)in Jun 05 (after just turning 50. She had none of the risk factors associated with this type of cancer - non-smoker, non-drinker and one of the nicest, kindest persons I've ever know.

Two weeks after returning to her home, she had laboured breathing, high temperatures and was checked out both in emmergency (after 5 hours waiting), as well as a new family doctor. On both ocassions, they sent her home even after we specifically asked for her to be checked out for pneumonia (having researched the symptoms. She collapsed at home at the end of the very week she was given the all clear by A&E and her new doctor. They resusitated her after 20mins - but she was already brain-damaged and was rushed to emmergency. We switched off the respirator a few days later after all the family and friends were able to fly over to the US. The diagnosis - pneumonia!

I cannot begin to describe this loss. Even now in Dec 05, it is as if it were yesterday. A constant re-living of events. I do hope that this post does not distress anyone unduly. The purpose of this article is two-fold:

1) Please do not hesitate to check out anything unusual during recovery, however small or insignificant this may be. Also, get the advice from where you're treated. We were treated in a different city to where my sister lived and so when she experienced problems, we went to the local healthcare. If necessary, stay in the same location for a few weeks after if you live away to make sure that the expert help is at hand if and when needed. We keep wondering if we had made the trip to the treatment hospital instead of the emmergency if the outcome would have been different.

2) I have now returned home (the UK), and am very keen to do some voluntary work with oral cancer patients, even if it is visiting the patients who are having chemo to read or listen to their stories. I am not medically trained but I have lived through the most difficult days and treatments with my sister. From a selfish standpoint, I am hoping that this may help with the healing.

If anyone knows of hospitals in the London or Essex area where oral cancer patients are treated, please do let me know asap. Any other suggestions for helping other survivors or patients would be very welcomed.

Thanks to everyone who helped us by your messages and life experiences. It was invaluable! A special thanks to Brian who is a true champion!

God Bless.