Support needed from health professionals during treatment and beyond

Disappointed sums it up beautifully @pattij I've been on this bus for a while and, while I'm incredibly grateful for the services that have kept me alive, the lack of attention to the subtler injuries--both mental and physical--makes me a bit sad.

I understand that there are limited resources, and that my 'lifestyle choice' to live in a regional area means I can't access the services which are available in the metro centres. It's disappointing that if I hadn't had access to the information this forum provides, I wouldn't know that there are programs designed to help people in my situation. For example, I've done my best to knit my own redneck rehab program but it shits me that no-one suggested I should do that. The programs aren't available here, so they are not mentioned. The hospital does run 4 week gentle exercise course a couple of time a year, but sitting in a chair waving my arms around is not going to cut it for me. I need to be doing pushups and serious weight bearing to keep my bone density stable and manage my lymphedema, so that what I do but I had to find that out for myself.

I'm constantly disappointed by the lack of understanding of the side effects of those life saving medications. The choice is clear, take them or don't take them, but it would be helpful to have some recognition of what those choices can mean to some people. Like Kez, I'm told my reactions are extreme. That's just a lie. The drug companies control the conversation about side effects and I do not think they are entirely unbiased. It's disappointing that the experiences of a sizable cohort are dismissed. It's fantastic that some people tolerate AIs well, but to suggest that 'some' people may have 'minor' joint and muscle pain is patronizing nonsense. It wouldn't make one bit of difference to my reaction to the drug, but it would be nice to know I'm not some weirdo who's body is rejecting a treatment that it is suggested others take with impunity. Misery may love company, but it is reassuring to know this is not just my problem. Sort of.