Great topic and definitely needed. This sounds like Alex's cancer co-ordinator who did all these things and was my first point of contact. Whilst she didn't do any training herself, she answered our questions, explained side effects, and organised for us to talk to others (eg PEG training and "you have cancer 101") who were nurses or social workers. Unfortunately, our cancer co-ordinator was on training wheels at the time and a lot of stuff slipped through the cracks. However, we forgave her because she was always in the ward cooing and checking on Alex after his procedures and operations suffered as a result of his complications associated with chemo induction.

She is clearly seriously overworked though, and we have been cut loose. Because Alex has NED for 12 months they consider him off the patient list until such time as one of the check ups reveal something to investigate (which won't happen I hope). This proves to be VERY aggravating because he is still underweight, still has a PEG (and we can't get anyone to remove it) and still suffers side effects that we think are hormone related. I have taken the whole issue outside the cancer clinic back to the GP who has been wonderful but doesn't understand what has happened to Alex and what the ongoing issues might be unless I tell him.

And this is where OCF craps all over any clinician, cancer co-ordinator or anyone else working in the area. Thanks to those who have been through it all, we have been given coping mechanisms, time frames and reassurance every step of the way. No glossy brochure could ever have prepared us for the breadth of the difficulties these side effects would have. Unfortunately, in my opinion these brochures are all about staying upbeat as much as possible so whilst they mention all the side effects they don't go anywhere near the true impact for some people. As they are designed to educate already terrified people, I can understand this, but it is not terribly helpful when you are halfway through treatment and know what mucositis REALLY feels like. And none of the brochures mentioned what Alex calls the "foam" and others call "phlegm".

The difference between OCF and cancer brochures is like staring at a doodle vs the Mona Lisa

I seem to have gone off topic a bit...again