Things I knew all along, but now I really both know and appreciate them

And these things all come under the heading of Support.   I’m very good at looking up and finding out things – blessings on the Internet, my iPhone and such.   What I’m now starting to get to grips with is People.

I’m absolutely positive that everyone living with, dealing with, or otherwise closely associated with, a very sick person and/or someone with a chronic illness (often the same person of course) needs Support in multiple ways.     I can handle the information gathering, collating, making sense thereof, putting together hypotheses, speculating, asking questions, re-collating, etc.   And I always questions doctors and other medical professionals – I never ever take their words as the final words (said before, but worth repeating on a constant basis).   I can handle that part with ease.  However, there are many many other forms of Support, which can help enormously.

Just as with directions,  sometimes the best way to do something is to ask someone.    While we were in the hospital from Friday through Monday afternoon, two People visited (and yes, I’m deliberately capitalizing Support and People, because I’ve learned something, and I need to keep reminding myself, so capitals help): one was a nutritionist, and the other was a patient resource manager.   When help arrives,  I don’t hesitate to ask, so help arrived, and I asked.   The nutritionist gave us some helpful tips about ensuring that Peter gets adequate nutrition and calories, and validated a lot of what we’ve been doing, so that was great.

But the patient resource manager was outstanding.   It never occurred to me that such help exists, and in such an excellent form.   She organized appointments with radiation oncology, assured us that so and so had been contacted, that our oncologist was updated with all information, that everything had been done, and if not, she set about doing it.   I felt like taking her home with me!   She also said that her equivalent exists at the clinic side, not just the hospital side, so you can count on my following up there.

And last, but best, Support from People who are close to us.   I’ve said before that the role I’m experiencing now is a lonely one, and it is, not to mention often scarey.   No matter how many folks are around, those things are inevitable.   However, for the first time since Peter’s cancer has significantly escalated, we have what we need – we can call on our son and daughter-in-law, and they were with us throughout the long Friday evening, came by frequently during the hospitalization, and the knowledge that they’d hop to for whatever we need is an incalculable relief to both of us.

So, Support in the form of People lessens and shares the burden.   I’m sure there are other People resources out there, and I’m going to hunt them down.  I already have plans to tackle a Duke pharmacist re various issues we have, and all along I’ve never hesitated to badger doctors and other medical professionals, as I’ve said.   But now I ask anyone and everyone about whatever questions I have, no matter how small or seemingly unrelated.   For example,  today at radiation oncology we met a nurse who explained how best to contact Duke in an emergency (see previous blog re my attempts!); in fact, that’s what we ended up doing, but now we know it’s the best way.

So to sum up:  help is out there, just go for it.

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