I use this blog to write about my husband’s cancer experience. Recently I’ve broadened it to include my sister-in-law’s challenges post surgery to remove a tumour. Today I write one blog that covers both.
Today started off with my husband withdrawn and non-communicative. Physically he had no real issues, that is, he wasn’t in pain, wasn’t nauseous – he just was not “present” in the way he usually is. We had an appointment in the afternoon and it took all I had to get him ready and out the door to get there. When we got back home I made him a cup of tea and left to visit his sister. An hour later he was exactly where I left him, teacup still full, face still troubled. I wonder about an unconscious connection between siblings.
His sister was experiencing one of the “down” days in this up and down battle of sepsis. Her temperature was up a little and her blood pressure was up as well. When her son had arrived in the morning, he found one of her wrists restrained against the bed rail. How long she had been restrained no one knows but we do know it came off as soon as her son arrived, especially since he noted that it had pressed quite firmly into her skin. The nurse on during the night explained that he’d restrained my sister-in-law because apparently she kept pulling off her finger clip used to measure her hydration. It seems remarkable that in such close quarters and with a 1:1 patient nurse ratio that they would find it necessary to restrain her, let alone leave the restraint on for the duration of the shift. When I was there today they were quick to increase her level of sedation because she was getting agitated and could dislodge something, but during the night they restrain rather than sedate? I don’t understand it and probably never will.
We had a nurse come in and explain some of the challenges my sister-in-law was presenting them with while sedated. For example she continues to chew on the intubation mouth piece and the nurse with us reprimanded her several times about it while we were in the room. She moved the tube around and then suctioned her. I suspect the nurse was trying to reassure us with respect to the level of care but it did the opposite, and my sister-in-law’s blood pressure reflected her objection as well. This same nurse advised us that my sister-in-law tends to get agitated when moved, “she doesn’t like being moved,” she says. Then, in the next instant, proceeds to move my sister-in-law’s arm who, guess what, gets agitated.
So I left the hospital feeling rather let down by the medical staff and one particular nurse. She’d presented me with a new challenge – what and how to tell my husband about his sister’s current status. Somehow though I think he knew and his present state reflects his frustration because he feels powerless to do anything. My husband has done so well with his chemo but can’t appreciate it or won’t until his sister is well. Regardless, the day did end on the upswing when some close family friends dropped by unexpectedly. Was it a coincidence that they stopped by when they did? It certainly did wonders for his state of mind – thank you.
What we wouldn’t give for a day where nothing, I mean, nothing happens. Where there are no nurses, no health issues, no phone calls and no news that relates to cancer. Just a normal day like normal people have.
Needless to say, the clot continues to dictate how the day goes. His leg is still swollen and painful when he tries to put any weight on it. Despite that we did a bit of walk outside using his rollator. It came at a cost as he felt quite ill from the exertion, but the nausea passed and it was a small victory for him to be able to get out and about. It is also important to start to resume some physical activity, so baby steps.
The day was also quite busy. We had the visiting nurse come over to do a check in and to flush his picc line (which happens every week); this visit took 45 minutes to an hour. Then we had a home visit from a dietician who has been assigned our file. She’s been trying to get by for a visit for some time and I kept putting her off. She has to do her job and I get that – she has been assigned our file so she needs to have a consult with us. So that took almost an hour. Unfortunately, most of the questions I had for her she couldn’t answer. But she’ll get back to me. Then we had a call from the Oncology Department asking for an update on his physical state – had it improved over the last couple of days; another 15 minutes gone. In amongst all of this we have a bunch of friends and family stopping just to catch up – and it can be quite hard to switch hats, so to speak, to put thoughts of cancer on the backburner.
Anyway the day is nearing its end, I don’t know where it went, but it’s almost 10 o’clock at night. Tomorrow we have absolutely nothing formal planned, but l’ve found life is seldom predictable.
So on Day 5 (Monday) we asked for some hydration. Sunday had started off so good, but went downhill. So by Monday morning I put a call in to the visiting nurse for hydration. She came in the afternoon, around 2:30 pm and hooked him up to an IV. Unfortunately we didn’t have an IV pole and so had to rig a hanger and a coat rack. This made moving around a bit awkward, but it did in a pinch. The IV took about 4 hours to complete. The saline solution did the trick and by 7 pm last night he was looking back on track. Although his appetite was a bit off, his spirits were back up. It didn’t hurt that there was an NFL exhibition game on either! Just like old times, Monday Night Football.
The nurse called on the phone again this morning to see how things were. Today, Tuesday, he’s very, very tired, but not nauseous and actually is eating pretty well. The hydration order provided by the hospital was provided to the visiting nurse staff on an as needed basis. So if he were to get severely nauseated or develop diarrhea then they would be able to come back in to hydrate him. We spoke about the risk to heart patients with respect to the IV adminstration of fluids. Definitely it is preferable to have him drink the fluids rather than use an IV, but if we use the IV then a slow administration, like the four hours used for the litre yesterday, is the safest way to go.
This continues to be one big learning curve, and I continue to ask questions of everyone as this progresses. For the most part the people that I have met along the way have been engaged, dedicated and caring and very receptive to questions. As is true of most things, I have met one or two individuals along the way where this is just a job. These are the people that I worry about.
The biggest issue we face right now is managing the pain. Debilitating pain can make a bad situation appear absolutely intolerable and literally shatter hope. We have been told that using the drugs and following the schedule would be the most significant approach to managing the pain. It makes perfect sense, right? But there are so many drugs, some at 8 am, some at 1030 am, some at noon, again at 2, then 430, and on and on….. So although I dole out the meds, the patient is less than willing to take them all. I cajole, beg, plead, and he says “I’ll take them when I need them. I feel pretty good right now.” The thing is he feels good because they are in his system, not taking them on the schedule means he dips and the pain comes back and, in our case, we got to a crisis point, where nothing was really touching the pain.
Today, we had the visiting nurse in. I took a different approach. We had all of our conversation in the room with my husband. I asked the nurse to explain the dosage of certain drugs, the interactions – if any, the role of each drug, etc. At the end of the conversation I did a simple summary of what we had discussed. “So the intent of the schedule is to ensure that the pain medication is delivered in a constant flow. The schedule requires that he take the meds even if he feels reasonably good, correct? There are three different types of pain relievers he is taking, they all have different roles, correct? One is for nerve pain, one is for chronic pain and one is for break through pain, he needs to take all three on a regularly scheduled basis – correct?” We talked through all of this, the three of us, the nurse, me and my husband, and a variety of other things as well. We will take this journey together.
Gannets on the Rocks