I rang up Lucia soon after getting back knowing she was off to the USA on the 29th to visit an aunt for a week and realising that, once again, we were fated not to meet.
In recent posts she has hinted at her disillusionment with (the lack of) off-treatment (OT) support.
She overwhelmed me, she let rip.
As Rob has observed, we are waiting for the other shoe to drop, and this can never perhaps be more so than in the first few months OT when you do not have the psychological reassurance of frequent hospital visits, regular bloodcounts etc. And it must be even more so when you are a young adult who feels your own mortality more acutely than a young child.
Lucia is somewhat bitter at this lack of support - it's there when you're on-treatment, and suddenly it's switched-off when you're off-treatment ... but the medical-scientific community does not consider a leukaemia patient "cured" until we have passed five years of Event Free Survival ...
She is also somewhat critical of the Teenage Cancer Trust. Firstly, for the issues discussed above but also for the emphasis on special teenage-equipped units rather than day-to-day support to teenagers on the paediatric ward, on the adult ward or OT (I am all to aware of this, working in Africa, "here's the photocopier", but there's no paper or toner ...).
Lucia also ironically observed that leukaemia doesn't come by itself but always comes coupled with another problem. I'll leave her to tell you her "partner" in leukaemia if and when she wants to, H. and A. have had to cope with dad and husband dying from cancer, we are having to cope with separation across two continents and nationalities etc ... nothing is easy when it comes to cancer.
Lucia is angry.