Diary of a Caregiver: Post-Surgery

Last updated: October 2018

This is the 2nd entry in a series that chronicles my grandfather’s journey with bladder cancer. The following are actual emails or messages in our family’s closed Facebook group where we communicated his progress to his children, grandchildren and significant others.


There is a large gap of time from the first entry in March 2016 (documented in Diary of a Caregiver: Diagnosis) to the following entry on October 21, 2016. During those seven months, Grandpa’s cancer had progressed quickly. Immunotherapy was not successful, and he experienced many complications.

He frequently had blood in his urine or wouldn't go days without being able to go to the bathroom. These issues landed him in the emergency room more times than my working parents were able to handle. He had several cystoscopies to scrape out blood clots. Eventually, his urologist pushed him to have a cystectomy, a full removal of his bladder.

The procedure was performed on October 17, 2016 at Georgetown University Hospital in Washington, DC. At this point I had moved to California but came home for his surgery at Grandma’s request. Because of my own lifelong health issues, I had become a bit savvy with the medical system.

Four days after his bladder was removed, one nurse and I attended to him for eight hours non-stop as his condition deteriorated quicker than we could keep up with. It did not look good. I was alone at the hospital with him but didn’t want scare Mom or Grandma without knowing what we were dealing with and Dad would know what to do. After hours without a break and ignoring the monster migraine attack that surfaced from the stress, I walked out of the room and sobbed uncontrollably. I honestly thought he wasn’t going to make it. At 35 years old, I felt like a child in that situation. Life had not prepared me to hold a dying man’s hand.

From me, October 21, 2016 – 4 days post-surgery

Dear Fam,
It’s been a rough day for Grandpa, but I want to start by saying he is doing much better right now. So, don’t be alarmed by the rest of the message.

Around noon he had a fever of 104 and blood pressure of 250/65 (translation=not good). This occurred shortly after his chest tube was taken out. For about four hours he was non responsive but breathing fine on his own. He was combative, only gave one-word answers and would not open his eyes. He would spit any pills and had to be given IV Tylenol.

Communication between departments

Cardiology and Urology were in an out of his room all day trying to pinpoint the cause of his rapid decline. The communication between the two departments was less than stellar and I had to often relay messages from one doctor to the other, the best I could. His nurse has been outstanding.

Warning- this next section is TMI. Grandpa has had excessive diarrhea, which could be caused by a contagious bacteria in his intestines (called C Diff). Until those results come back, the protocol is for anyone entering his room to wear a disposable gown and gloves. If you catch it while visiting you could pass it onto others. It could be that tomorrow the results say he doesn’t have it, but they have put this precaution in place. If he has it, I’ve already been exposed.

Concern of infection

There is concern of infection. It was difficult to get blood samples from him in this state. Veteran nurses had to be called in to find some cooperative veins.
He just came back from a CT scan to check for any other irregularities. We won’t know results until the morning. The CT scan will also check for pneumonia, a complication we want to avoid at all costs. The respiratory team sees him a few times a day to give him nebulizer treatments to prevent this, but it can still occur.

Since his blood pressure has consistently been high since surgery with a baseline of around 170/60 and sometimes his breathing is labored, he is being moved to a new, private room in the ICU where he can be monitored more closely. I’m staying the night with him tonight. Until he is stable, he will likely be here for many more days.

I believe it’s important that there is family with him during the day. I’ve been here every day since Monday with help from Aunt Laurie and Uncle Jeff. Aunt Cindy is coming all day tomorrow (Friday). So basically, we need volunteers for the weekend and potentially next week. Bring something to do and be prepared to see things you can’t “unsee.”

His comfort is key

A one-hour visit is not long enough to maintain his continuity of care. Ask questions and advocate for him. The nurses and doctors are stellar, but his comfort is key. Sometimes he won’t ask for things unless you ask him.

As I mentioned before, the different departments don’t always have the latest information, which is why a family member is key in making sure nothing is missed. Serious communication errors occurred all day today, creating chaos about a clear plan for him. When in doubt, the nurses are your best resource.

The takeaway

He does occasionally get disoriented, especially about the time of day and whether he’s in his room or not. Tell him to look out the window as he gets day and night mixed up. Show him his bathrobe so he knows his stuff is there and he’s in the right place.

After his fever broke, I asked him if he wanted to tell the family anything. He said, “well, it’s probably not appropriate to tell them I’m doing fine, but I’m not dying either.” Typical answer from him. The takeaway is that Grandpa has made it to fight another day.
Love you all.

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