It is the first day after chemo treatment #3 and we have run into a glitch. Hydration is required for at least the first two days after the treatment and we had believed a Standing Order was in place. The visiting nurse came to the house this morning and advised us that the Orders they had received were date specific and that there were none for this round of chemo. Translation, we need a new Order issued for every chemo treatment and there is not one prepared for today. The nurse called Oncology and advised them that she was waiting for the Order before she would set up hydration. She waited about a half an hour and nothing came through. She’s since left and we are awaiting her return. It’s been three hours and we don’t know what is going on.
This may seem minor but it is very disconcerting for a patient. You want to think that everyone is well informed about your particular case, but in reality it seems the lines of communication are broken. After the nurse left I called the hospital and spoke to the Triage Nurse. I told her that my understanding was that after every treatment my husband would receive hydration for at minimum two days and that, at present, we had been told by the visiting nurse that there is no Standing Order in place. I asked her to fax through a Standing Order for hydration to the Nursing Agency that our visiting nurses are attached to, an Order that covers the duration of his chemo treatments. This was two hours ago. I suspect that we are dealing with layers of bureaucracy now, we have to hope that the agency the nurses are attached to moves on relaying the communication to the visiting nurse. So three steps to sort out a simple request, and a delay embedded in each one, before the patient gets any response.
At the same time I asked the Triage Nurse about the B12 injection, and if an Order had been sent through to set this up. My husband hasn’t had one since the beginning of August. His energy levels have diminished significantly. We had assumed that these injections would be scheduled or mapped out as part of a treatment plan. (I’m starting to wonder if a treatment plan actually exists beyond the chemotherapy infusions – maybe this isn’t Oncology’s role, maybe this is my GP’s? Either way I need to know.) I had inquired about the B12 injection at my husband’s chemotherapy treatment yesterday, and at that point we were able to have an injection scheduled, so my query to the Triage Nurse was to ensure that this was indeed on his file. I still have questions about it – is Oncology faxing a prescription through to our local Pharmacy? Is Oncology sending an Order to our visiting nurse to administer the injection? The Triage Nurse advised she would have my Oncologist’s nurse call me back in this regard.
Here’s the thing, for Oncology this is a job, it’s personal only in the sense that it is a revenue and recognition stream. For the Patient, this is a treatment they are engaged in to extend, enhance or even save their life – it’s intensely and profoundly personal. For Oncology, the Patient is a client that they need to provide a service for, to use the drugs that cost millions of dollars to develop, to chart a statistical path that guides and informs treatments for future patients. For the Patient, Oncology represents the pinnacle of healthcare, their new lifeline, saviour, in some cases last or only hope; it is a belief system that they cling to and pin all their future dreams on. Vastly different perspectives and how do you reconcile them – fact is, you can’t. It just bears reminding that no one wants to be a statistic, but they do want to be a success story.
So Post Chemo Treatment Day 3 brings me full circle to something I mentioned months ago – don’t assume anything and ask questions about everything. I had forgotten my own rule, or maybe I just figured that after three treatments we would be in the system and a process mapped out like a well oiled machine. That was an assumption I will not make again. We are a numbered file that feeds the statistics pool. Consequently, before we leave chemo next time I will ask: Are there hydration orders in place? When are our next treatments? Are there other treatments that he will require to ensure he has an optimal experience with his treatment? I need to do and ask and say all of the things that will address the stress associated with this process. Because less stress for me translates to less stress for the patient and that is what this all about.