From the moment I stepped into the room that would become my home for 22 days, I felt like I was receiving exceptional care. Considering the severity of the situation, my nurses were not only professional and attentive, but they were huge emotional supports too. If you could have bottled the tears I cried in those 22 days, you probably could have filled a backyard swimming pool and my nurses were always willing to give me a hug or rub my back. My medications came at the same time every day, they helped me with what supplementary drugs I needed to help manage symptoms, they gave me tips on how to manage with my new routine. They became my family. Like any family, we certainly had some moments that were a little…frustrating…but we got through it like any loving family would.
Since I was admitted through the Christmas season, the nursing schedule was a little messy. I recall during my treatment having a severe case of mucositis. I was heavily and routinely medicated for severe pain. I can recall a nurse missed a dose which resulted in a very unhappy me and an eventual cry it out session between me and that poor nurse (love you Nicole!!!). On another occasion, a nurse gave me the wrong medications. Fortunately, I was well aware of the medications I should be taking and it was resolved quickly. The point is not to bash on nurses. Especially not at Juravinski Hospital as the care I received there far supersedes the professionalism and compassion of any other medical team I’ve ever worked with. To be honest, I think nurses really get the short end of the stick. They get peed and pooped on, yelled at by patients, yelled at by doctors, there’s never enough of them so they are overworked and stressed out and the government is constantly trying to get rid of them. How about if the government wants to cut some costs, reduce the hundreds of thousands of dollars they are paying their ministers instead of cutting these people who we need so badly. We need nurses and we need safe and updated schools for our kids too!!! *Political rant complete*
The point is, nurses are not perfect. Neither am I. Neither are you. Keeping this in mind, the best advice I can give anyone who finds themselves an inpatient is, take responsibility for your own health. Know your meds, know what they are called, what they do, when you should take them and side effects they could cause, know your do’s and dont’s while at various stages of your treatment. Your nurses do not know everything you are experiencing unless you tell them. If you experience a reaction to a medication and you wait, you are making it harder on yourself and harder on them.
INPATIENT TO OUTPATIENT TRANSITION
The extent of my preparation for discharge was a conversation with CCAC about PICC care which was ultimately misinforming, getting prescriptions fill and a coaching session on when to take them and how and finally a piece of paper I was to take to ODS with me the next day. My first day in Outpatient Day Services (ODS) was New Years Eve. They were a skeleton staff, my treatment hadn’t been delivered by the pharmacy yet, which didn’t matter because it couldn’t be administered without an EKG anyway (I had daily EKGs for 2 months to make sure my heart could handle the treatment). There was no EKG technician on staff at my appointment time that day so the nurses had to find a machine and do it themselves. My fiancé and I spent 7.5 hours at the hospital that day and didn’t get home until after our kids were put to bed by their grandmother. It was FRUSTRATING. I had just spent the last 22 days away from home, away from my kids, and here I was spending almost 10 hours travelling for and taking treatment as an outpatient.
It took weeks of 7 hour days at the hospital being angry, frustrated, exhausted, sick, sad, to realize that things just don’t work the same way as they do on the other side. Inpatient nurses deal with a handful of patients in a day compared to the number of different patients outpatient day services see. If you think about it, the inpatients are the same people all day for many days at a time. As an ODS nurse, they deal (maybe) with as many patients in an hour or two. If I were dealing with that many people in a day, guess what, I’d forget stuff too. While there are certainly improvements that can be made to the patient experience, it’s also fair to say that it’s unrealistic to expect things to run smoothly all the time. Again, we are all human.
For anyone going from an inpatient to an outpatient environment, as mentioned above, you are responsible for your health. Know what your treatment plan is, you are dealing with a whole new set of people who need to get to know you.
Since my heart took such a hit during Induction, my team insisted on daily EKGs and keeping my potassium and magnesium levels higher than usual. This threw a number of nurses off because I was the exception to the rule. It resulted in countless additional hours spent at the hospital. It was very upsetting but at the end of the day, I knew these were requirements, yet I said nothing. It took me a while to realize, all I had to do was ask if my chemistry results were back yet so we knew if magnesium was needed. Once I started asking, my nurses were reminded that something was outstanding for the day and would check right away. Eventually, we got to the point where my Nurse Practitioner (NP) offered to write standing orders to hang magnesium right away to help get me out of there within a reasonable time everyday. It made up to a 3 hour difference per day (I still miss her dearly). If something isn’t working for you, ask for options.
I was fortunate to participate in an CHCH News Interview in April in support of Daffodil month and cancer research at McMaster University. Click the highlighted link to check it out! The day after it aired I was pumped! There was something very therapeutic about watching myself tell my story on TV. When I arrived in ODS, I showed every nurse that would watch on my phone. After all, they had become my family. Some gathered around to watch together. Other days, I could barely get a word in before they were off to the next patient. Unfortunately, in an environment such as the latter, sometimes things get tense. I can’t tell you how many times I watched people just lose it on the nurses. The professionalism maintained even while being yelled at was impressive. However, there were a very small number of individuals who I worked with that I felt were neglectful. I was completely blown away at the lack of sensitivity displayed by the few. As patients, we are going through the fight of a lifetime. Literally fighting for our lives. There is never an instance that being spoken down to is ok. Know that there are management teams responsible for each department. If you have a concern with something that is happening, there is a team you can talk to confidentially to resolve your concern. Again, I can not stress how important it is to be aware of what’s going on and don’t be afraid to speak up. It only takes 1 mistake to create a larger issue.
Another difference between my inpatient and outpatient experience was that, when I was in a room, people came to me, such as dieticians and social workers. The social worker on the ward was awesome. She was a great resource for information, she was very helpful when filling out paperwork for my employer and insurance company, she was also friendly and compassionate. It took me almost 4 months of visiting ODS before I realized there was a social worker for that area! The resources may not be quite as visible as an outpatient, but they are there. If you feel like you need help, ask your nurse and they can surely point you in the right direction. If there is a certain type of help you are looking for that is not provided by your hospital, you may be interested in checking out the organizations listed in the Resources menu.
The above may seem repetitive but it’s only to emphasize how important this is. Empower yourself to be your own advocate. It feels good and gives you the best shot at going through treatment with fewer complications.
Until next time, keep up the good fight. You’ve got this!