Marie N. on February 23, 2010
I am in remission (as of 12/14/09 4PM PST!) from NHL Large B Cell cancer. After my last office visit I was given the 'green light' so to speak and was informed that upcoming schedules for labs and scans would be mailed to me. That was it! Talk about feeling abandoned. I have the where withal to have found a cancer support group (on my own) and delve into the myriad of helpful internet sites (including many of the cancer sites) but the one-on-one connection with a staff member would have been GREAT.
I have interviewed some of the cancer survivor (and on going cancer treatment) members as well as others in the professional world. They all said the same thing: Marie, GREAT idea - which is to have a "Post treatment patient rep" (not requiring an RN or MSW degree)as a conduit between the patient and the clinical staff who would call the patients maybe on a monthly basis and ask how they are feeling, sleeping, eating, etc. - and keep a separate data base for responses to these questions. This 'rep' position would also be giving out local resources (and even websites) to those requesting help. There are some of us who can pop onto the computer, but there are others that are fragile or confused and need the 'personal touch' - CHALLENGES: who would pay for this position - the oncology office is there to make money on sick people and may not want an overhead expense like this. POSSIBILITIES: write for a grant - talk about something positive!
I know larger cities (I live in Southern Oregon, Grants Pass pop. 31,000) have a total team approach.
Do you have any feedback for me? I know this may fall under 'survivorship' issues - but maybe it's more than that. I don't know. I've got a light under me and I don't want to lose the passion in a sea of closed doors.