There is a theory that at some point after active treatment you have an appointment to review a survivorship plan. That is, what do you need to know and do once active treatment is over? How do you manage your health issues post treatment?
I went to that appointment, but didn’t get much out of it. In part, I pushed for the appointment too early. I think now, at two years, I’m finally ready to start thinking about survivorship. I am not so much in “active recovery”, as I am in trying to figure out how to be a healthy person again.
One of the challenges I’m navigating now is that I get healthcare from two different organizations (Stanford and PAMF). My medical records are consolidated through Care Everywhere – this means that my medications lists are cross posted and any blood tests and such also get cross posted, but detailed notes of procedures are more challenging. I often need to tell the doctors about my recent medical history.
I’m struggling with when I should be seeing primary care and when I should be seeing specialists. I have a bunch of specialists – both at Stanford and at PAMF. Some of them were temporary specialists, in that I only saw them once or twice and there is no plan for continuing care from them; however, they may have prescribed something, so I am coming up with needing renewals of prescriptions and have no clue which doctor I should be talking to. Fortunately, many of things my primary care doc is happy to take over management. So, I’m starting to consolidate, and I’m starting to reduce the number of specialists I’m seeing. I am also choosing to trust that my primary care doc will send me to the specialists when things are out of scope for her.
Through all of this, I’ve learned to pass on the specialists I don’t like, and keep the ones I do. I’m still scared that I’ll miss something – that this symptom or that will mean more than it does – but I’m trying to find that trust in my body again. I’m trying to figure out how I can be ‘healthy’ again.
I also want to highlight that because of my surgical choice, and the fact that I don’t have hereditary cancer, my follow up appointments with oncology don’t generally involve additional scans. If I don’t have symptoms, then I don’t have scans. All of the scans I’ve had post-treatment have been brought on by symptoms, and all have come out negative for cancer – but they took a toll on me mentally. Each time, I had to deal with fear. I’m getting better at not completely overreacting, but I’m still finding myself overly stressed until I can get the scan over with. I look back and think that I put myself through horrible scans (the latest being a colonoscopy), and they turned up negative. I am really just sick of scans and tests. I need to step back and work towards a reduction of medical appointments. I remember pledging to try to schedule embargos on doctors appointments, and yet I have failed to follow through with that. I do manage to avoid appointments over my two week holidays, but I haven’t managed to successfully book an appointment embargo for a time when I am in town. I need to get them back into my calendar, and I need to learn to stick to it!
Feature image CC0 via Pixabay
