One of the most difficult things, if not the most difficult thing, for me in coming to terms with my husband’s death has been trying to figure out where things went wrong and even if I think I know where things went wrong forgiving myself for making what I or we thought was the best decision at the time, and accepting that there are no do overs when someone you love has cancer. Some of the decisions may not have been the best ones, including those made by the people who were supposed to be supporting us and being our guides; this includes the cancer nurses, and in our case, many of the individuals affiliated with CACC (Community Care Access Centre).
I know as I sit here there are at least three things had I known what I know now I would have done differently. Though I was advocating to the best of my abilities I would have screamed louder and made sure they understood that they were failing not only in carrying out their jobs but also as support persons and health care providers. The first thing I would do differently is NOT rely on CCAC and their affiliates to provide the support my husband Richard needed to keep on walking. We were told the steroids he had been taking had affected those muscles that enabled him to push through and stand on his own. Once up and standing he could walk, but that last inch or two in straightening himself out required assistance. At 6’1” and close to 200 lbs., I at 5’7” and 130lbs could not support him. It was the day he couldn’t stand up that I called in CCAC. I was told that absolutely they could help, and that it could take up to 2 weeks to have a consistent team in place, one that was trained and would be able to assist Richard with his walking exercises daily. I was told hiring someone privately would eat up savings quickly, something I would want to avoid, and something that was not necessary. Since the steroid dose had been reduced we hoped this too would help. After we discussed this we put our faith in CCAC and decided that if it would take two then this could likely work out okay.
During the second week, two people were formally trained. Up until that point we had a variety of personal support workers (PSWs) who primarily offered to give my husband a shave or a sponge bath, because they weren’t trained on getting him to stand, getting to the bathroom for a shower wasn’t even on the agenda. When after two weeks I realized how badly CACC had responded to my husband’s needs I spoke to a friend about my frustration that only two people were trained and that he was left to lie in bed for 5 out of 7 days. When I stated I was going to hire someone privately, she suggested quite reasonably that I contact CACC directly and our caseworker and express my concerns. Especially since Richard was quickly approaching another round of chemo and walking was extremely helpful to him, I did so first thing the next day. After apologizing and once again being reassured they could provide the care he needed a date was set for more training. This time the supervisor/trainer came down with the flu and there was no back up plan. However, when I called about a back up plan a different supervisor I spoke with said she would personally come out on Friday and she would conduct the training. I thought that this was very good of her, and even though we were now into week 3 after I had first called them, if all of the PSWs were trained by the end of the week, maybe it would still be okay. On Friday when no one came, I called to be told that it was Good Friday and they were on a skeleton crew and the person who had offered to come to train the company’s staff was off for the day. And so we headed into week 4 (chemo week- a week of focusing on surviving). When were the PSWs finally trained in how to support my husband to stand up correctly? That would be week 5 and I would like to tell you that things went smoothly after that, but, people needed days off and not everyone had been trained, so many a day went by when there was no one to help my husband stand up to walk. You can just imagine what this did to his muscle tone and mass. Had I foreseen this, I would never have called CCAC but would have hired someone privately to come in and exercise with him. When I called CCAC he was, all things considered, in good shape. He was walking several times a day on the treadmill across the hall, not for long periods of time during chemo week, but still every day. He never got back on the treadmill after I called CCAC. In many ways, I think now this was the beginning of the end.
The medications my husband was on were constipating, especially the anti-nausea drug he took with his chemotherapy drugs for one week every 4 weeks. It had started to become an issue in December after 4 rounds of the drugs. We mentioned it to the chemotherapy nurse and told her what we were doing which was that he was drinking close to 60 oz. a day, eating nothing but fruits and vegetables including prunes, and taking Senokot (a natural laxative) and docusate sodium (a stool softener). No other suggestions were offered. Three more rounds of chemotherapy would be undertaken, with the constipation becoming worse with each round. At one point, he was in such pain that I called the nurses on call first thing in the morning to see what they could do. A nurse called back at the end of the day saying because he was on chemotherapy they wouldn’t touch him and that we had to contact the oncology nurse. The cancer clinic was closed for the day and so I called first thing the next day. The oncology nurse didn’t call back until the following day. This meant my husband suffered for 3 days as I frantically tried to find some solution that would help his bowels move. I am certain his lack of movement at this point in time exacerbated the situation. In the end, it was prune juice that seemed to get the process moving, though not by much. By the time the oncology nurse called back things had begun to move, though slowly, and so she added nothing new to our toolbox of tricks. When we were back at the Cancer Clinic in March I again mentioned the real pain and how debilitating the last round of chemo had been. This time we were told that if he has constipation and the Senokot and docusate sodium isn’t doing enough that he should take a product called Lactulose. I will never understand why no one mentioned this product at any of our previous meetings. The poor guy had back pain about half way up his back. The doctors thought it was the result of his lying in bed for long periods of time, but, after the next month’s dosing with Lactulose, the pain suddenly disappeared suggesting his bowels may have been impacted to the point that they were creating this pain. All of this could have been avoided if only someone had said, if he gets constipated, don’t let that happen, especially when his system is full of chemotherapy. If need be have him take Lactulose to keep things moving. Otherwise it will zap more of his strength, which in Richard’s case it did. A friend of our told me a similar story about he husband becoming dehydrated. Only when she asked he be admitted during chemo week to keep him hydrated and out the emergency department, did the doctors agree to have him hydrated at home. If I had to do this over again I would have insisted that someone help me to find an alternative solution and that they do so quickly. If something isn’t right, even if you ask the people who should know and help, if they don’t and you still know it isn’t right, keep on asking until someone gives you a solution. I would even consider calling people you know who have had cancer or whose loved ones have had cancer. I would gladly share any information I learned from this process if I thought it might make it easier for someone else.
The third do over involves the lack of medical care options for people with cancer in our city. Your only option if you have cancer and you feel crappy is to go to the emergency department at the hospital. If you are in treatment and taking chemotherapy on a regular basis this is really the last germ infested bastion you want to go to. However, unless your family doctor, provided you are one of the lucky ones who has one in this area, does house calls, you are shit out of luck. They will tell you to go to emergency. If you’ve picked up a chest cold and you may need antibiotics, and you’re too sick to go to the doctors, you will need to call for an ambulance transfer to take you to the Emergency department; hopefully the sterile isolation room will be available and then they will give you your first dose of antibiotics intravenously and send you home with the rest. A doctor needs to see you and if you can’t get to them don’t count on them coming to you. The only exception is if you have been deemed palliative. Do over number three is letting Richard’s case worker and our family doctor list him as palliative, though neither had come to see him (remember my doctor doesn’t make house calls). Now we had a doctor, a palliative doctor. All of the tests she ran came back negative. Unfortunately, about a month later my husband had a sudden relapse and his breathing became laboured. If he hadn’t had this doctor I would have taken him to Emergency. I wish I had. The doctor was good in that she changed one of his seizure medications from Keppra to Phenobarbital, her thinking being that the erratic breathing could be some form of seizure, and this drug stopped not only his erratic breathing but also all break through seizures. He could finally sleep, which he did, which we both did for about two weeks. And then I realized he was sleeping longer and longer. So I started to research this drug and realized that the dosage was high enough to put him into a coma and was used to sedate people who were dying. Richard was still fighting. He may have had a seizure but at this point in time he had had two good MRIs. But, it wasn’t until I called his neurologist to see if I could cut the dosage back a second time and he made a comment about this drug have a drug hangover effect that I began to watch for other side effects. More specifically, I was looking for this drug hang over effect and sure enough the longer periods of sleeping could have been attributed to disease progression but it could also have been a drug hangover. When Richard told me he was fighting to wake up and that he would fight to cough and he couldn’t wake up enough to clear his cough and that he felt drugged every time he had a dose of this drug and how he hated it that we had to at least try to change the drug. In the interim I had learned that this drug has a half-life of 5 days, something I had never seen, something that neither the neurologist, nor the nurses, nor the hospice person I called knew about. I will never understand how you can prescribe a medication to someone who is so sick and weak and not tell the caregiver, much less the nurses caring for him, of its potential side effects. Would it have made enough of a difference for him to be sitting here with me today? I’m not sure. The third and last MRI showed new lesions in the brain stem. But, I do know that had I known what the potential side effect were and what to watch for that we would have reduced the dosage sooner or switched him to another drug earlier. And I do know that initially the phenobarbital was helpful and he did regain some of his strength and his appetite. I also know that as the drug hangover hit, he’d wake up and be hungry and by the time I’d have made him something to eat he’d have fallen back asleep. He was hungry and thirsty, but he couldn’t fight his was out of the drug haze long enough to eat and drink through out the day. Instead he had to rely on whatever he could get into his system in the evening as the drug’s effects subsided. And this wouldn’t have been enough for anyone, much less someone who was already ill. Part of this do over would have been to call the neurologist myself and to discuss with him the change in drugs, something I assumed the palliative care doctor did, but apparently didn’t do. I would also have asked more questions as to what I could potentially expect to see happen when the phenobarbital was discontinued and replaced with carbamazepine. The main question I wish I would have asked is “if he is suffering from a phenobarbital hang over and the carbamazepine can also cause drowsiness, is it possible that we end up creating a situation whereby he is again sedated for long periods of time, unable to eat, drink or cough?” Because in the end this is what happened. We knew if he wasn’t put on another drug he would get too weak and he would die we thought within days. Sadly, by the time the drugs sorted themselves out and he was again awake his body had deteriorated to the point that death was imminent. The most grueling irony was that because we were still unsure exactly how well the carbamazepine would work, the only drug the doctors knew for sure that would prevent him from having a massive seizure (which was painful to him beyond words) was the phenobarbital. The drug switch may have bought him a couple of extra days, but we’ll never know had it been done earlier and the side effects explained and better monitored, whether it would have bought him enough time to and strength to continue on with the next stage of the chemotherapy.
I remember my family doctor’s nurse questioning me if I wasn’t glad that we now had a doctor. I remember telling her I really wasn’t sure. And shortly thereafter, realizing that no, I wasn’t happy about having this doctor, because it was more important to have the right doctor and I was quite certain it wasn’t this doctor. To date we have nothing in our health care system that supports those who are in treatment for cancer other than what I’ve outlined here. What we need is a system whereby doctors familiar with chemotherapy side effects and the challenges that accompany this type of treatment make house calls. It is both ludicrous and cruel that the only option available to someone whose immune system is severely compromised is to go to the Emergency department when the situation could more easily and likely more effectively be resolved with a house call. Its just plain wrong.