There are many things we've learned to tolerate on this journey, but lying? Unacceptable.

My husband has a port. An infusion home health nurse comes once a week to change the dressing and the needle. We weren't told about this weekly painful process. It wasn't a lie, in our case - it was more of an oversight. We're NOT naive, very assertive advocates for needs, and were surprised when we learned that the weekly visit was part of the process. We only heard the good points (e.g., husband gaining weight; balancing sodium to stay out of ICU), which have turned out to be life saviors, so at this point, my husband deals every Monday morning when the nurse comes.

We're using the port for TPN and hydration. My husband hasn't been strong enough for chemo and now the cancer has spread to multiple organs. The oncologist is now saying it's too late...which has infuriated our surgeon and she's seeing a second opinion at a different hospital. Too soon --- turned into too late. We're moving on from him. He was suppose to be incredible.

Telling you that because we do not have experience with chemo and the port. Hopefully, that is coming within the next week or so.

However, over the 7 months we've had the port, we've learned that some people keep their port, but it's "closed" and is not accessed. Means no more weekly needles.

As for any tests, say no. They MUST respect that. We've said NO to a number of things - for example, when we were getting discharged from the hospital yesterday, the hospitalist was insisting that someone access our port, and change the needle. We refused. No way was someone who doesn't deal with ports on a daily basis touching his port.

They backed off.

Wishing you all the best... and as a wife, I'm sure 90% of the time, she loves having you underfoot:)

Instead of having it removed, could you have it "un-accessed" and thus, turn off the tests and needles and such?