Or not…as the case may be.
One of the hardest things for me prior to being admitted to the hospital for 4 (now 5) days of inpatient chemotherapy was knowing what to expect. What would I be allowed to do? Not allowed to do? What should I pack?
Would I be allowed to take showers?
Would I be allowed to leave my room? The floor?
I asked my doctor these specific questions.
I was told to bring my toiletries, my clothes, and myself. I would be fine. We would have to coordinate the timing for showers but they would be allowed.
So I packed several sets of clean clothes. I packed my toiletries, assuming I would be allowed to take showers.
Monday was an immunotherapy day followed by hospital admission and the start of chemo. They weren’t sure if they were going to start the chemo Monday evening or wait until Tuesday morning. I asked why bother to be admitted on Monday night if they weren’t going to start the chemo until the next day. They decided to start Monday at about 6pm.
I didn’t think about it too much on Monday night. I had fitful sleep being away from home and surrounded by all the medical noises and nurses who woke me up to check on me every few hours.
Tuesday morning came, I started my day, had lots of visitors, and again didn’t think too much about it. By Tuesday evening I was feeling a little grimy, still wearing the same shirt and leggings I had started with Monday.
I slept a lot better on Tuesday night, but I suffered from my normal hot flashes most of the night (this is a post menopause thing, not a cancer thing). The end result is that I was really sweaty and sticky by Wednesday morning.
Wednesday morning…nurse comes in to check on me and I ask…May I take a shower today? The answer was NO, you are hooked up to the IV and we do not disturb the IV at all for anything. And off she went. It occurred to me at that moment that not only was I not going to get a shower but that I was trapped in the shirt I was wearing without any hope of changing it for at least 12 hours, the same shirt I put on Monday morning.
I spent the next hour or so crying. I was hot, sweaty, sticky, grimy, about as far from any sense of normal as I could be and I was hopelessly miserable.
At shift change the nurse came back, asked what was wrong, I explained through my tears. The doctor came through making rounds, they asked him. He said no…risk of infection too high. I pointed out that I will be taking a shower the moment I get home. Somehow that is ok. It is the IV combined with the shower they are concerned about. Note: This was not my doctor but the doctor on call making rounds.
I got over myself. I washed my hair in the bathroom sink (where the faucet is far too close to the back of the sink to really get your head under), I washed my face, and I used Action Wipes (a shower in a packet) to wipe most of the sweaty icky off my body. Then I changed my leggings and set out a clean shirt. I informed basically everyone that I would be changing my shirt at 6pm when they changed the chemo bag. This was non-negotiable.
I watched the clock, anxious for the opportunity to put on a clean shirt. 6pm came. The chemo bag was empty. My nurse came, took it down, disconnected me so I could change my shirt. And then it took 20 minutes before they had the staff to hang the new chemo bag. I can take 2 showers in that amount of time.
Let’s break down the concerns.
- The PICC line has to stay dry (risk of infection)
- I have an outstanding waterproof sleeve that I use to take showers at home and I brought it with me to the hospital
- I can’t take a shower with the IV attached (risk of infection)
- Every day they have to disconnect the IV to change the chemo bag – there is the opportunity
I think that’s it.
So, by communicating the timing (which no one did, including me) I could have had the opportunity to wash and put on fresh clothes, in the time it takes to change the chemo bag.
Allowing me to shower and change once a day keeps me feeling fresh and somewhat myself. On the flip side, not allowing me to shower or change for 5 days makes me feel dirty, uncomfortable, and less and less like myself. In short, it makes me miserable.
I know there are trade-offs. I know there are risks. I also know that most risks can be mitigated. And there is value in treating patients as actual people and not just a tumor house.
Going without any shower for 5 days is unacceptable. And it cannot be healthy.
Dear doctors and nurses…DO BETTER.
Update from MY doctor…She called to check on me and answer a question I had. I told her I had been banned from showers. She was not happy about this and we worked out a plan to solve this. She is going to talk to the other doctor and she is going to put an order in my chart for showers for the next cycle so the nursing staff is clear on her expectations for me. This post has all the drama I experienced, but I think the issue is solved without having to go through all the drama with my doctor.