A Day in the Life of a Stage IV Caregiver
When metastatic bladder cancer overtook our lives, I ended up taking an extended leave from work. My husband, Ahmad, needed my help and there was just too much to manage and do.
If you haven’t experienced a cancer diagnosis and its treatment, it is hard to convey just how time consuming cancer is. If you receive an early stage diagnosis, you are likely rushed into treatment be it BCG, TURBTs, or a radical cystectomy (RC) if the disease is considered aggressive. Prior to the RC, you’ll likely receive chemotherapy.
The quick pace
Ahmad received a metastatic cancer diagnosis in May 2013. He started chemo in late June and in early July, he was admitted to the hospital for 10 days with severe blood clots in his legs that required emergency surgery.
When he was discharged, the hospital scheduled visits from a home-care team. This was helpful to us, but those visits plus treatment and follow-up appointments kept us constantly busy.
A work colleague asked me at one point if I was “bored” staying home. I was a lot of things: exhausted, frustrated, overwhelmed, but bored was not one of them.
I could understand the question
Before I dealt with cancer firsthand, I probably would have asked the same question. Don’t you just go to some doctor’s appointments every few weeks, get a couple hours of chemo, and then go home and rest or do whatever you want?
It can vary drastically depending on the patient and the cancer, but here’s a typical day when we were in the trenches of Stage IV. This was a few weeks after he got out of the hospital for blood clots and was back on chemo.
We would wake up really early, maybe 4 a.m. because the pain from the tumor pressing on his spine requires more short-term (“breakthrough”) pain medicine. He would take some and we’d fall back asleep. (Oftentimes, he would wake up during the night in pain, too.)
The pain was intense
We would get up around 7 a.m. He would need help to get up because the pain was intense. To prevent more blood clots required compression stocking which were impossible to put on. A nurse recommended ACE bandages with Velcro. I would help him put on these ACE bandages, finished getting dressed, then socks and shoes.
I would update the whiteboard of the numerous medicines: Fentanyl patch for long-term pain management, oral medicine for breakthrough pain, another type of pain medicine for neuropathy pain, a blood thinner injection given daily for several weeks as a bridge to an oral blood thinner. If it was a day or two after chemo or the day of chemo, anti-nausea medicine was needed to minimize sickness from the infusion.
Visits from home health professionals
On many days, some kind of home health professional would visit our home. It could be a nurse, an occupational therapist, a physical therapist, or a social worker. He or she would give us an estimated time of their visit but then would call just before the visit.
Those visits would last about an hour or so. We often also had medical appointments: for chemo, for a transfusion to boost blood counts that went down due to chemo, to meet with the pain management (palliative care) specialists, to meet with the anti-coagulation specialists, to meet with a researcher about a possible clinical trial, to get a CT scan to find out whether the chemo is working. And on it went.
Getting to and from appointments
Getting to and from an appointment, because Ahmad’s pain was high required dropping him off very close to the door. We had a disabled parking pass but it didn’t help if the spots were full. San Francisco is not an easy place to find parking in the best circumstances. Dropping Ahmad off by a door often required me to block traffic and agitate drivers. Until they realized the reason why I stopped where I did.
You do what medical professionals tell you to do in the hopes of staying alive. But it is not an easy path when you are deep into it.
You definitely will not be bored.