After the 5K Give a Breath run on June 1st, my life took a bit of a turn and I ended up in hospital for four days. I'm going to recount what happened in some detail and it may be a bit graphic for those who don't live in a medical world. I tell the story as a reminder that immuno-compromised doesn't mean "wearing a mask" or jump to the head of the line in ER. It can be life-threatening.
As many of you know, I've been riding a bike a lot; exploring my neighbourhood; cycling to hospital, blood testing, and imaging appointments. About two weeks ago I rode to an oncologist's appointment. Later that night I felt a little "saddle sore." I had gone a little bit further than usual and hadn't adjusted the seat properly till near the end of the ride. It stayed sore but while uncomfortable wasn't debilitating.
Over the next few days, I seemed to be having a bit of a rough time getting over the chemo infusion. I experienced low energy, some dizziness, and the ever present "metal mouth". On June 1st lung cancer patients and supporters gathered for the Give a Breath 5K run in the drizzly rain. When I got home I noticed my glute muscle seemed to be a bit swollen and I wondered if I had pulled it. The swelling seemed to be growing, making it hard to sit and hard to walk. I tried icing it but it was an awkward place to ice and though it gave me some relief, it didn't seem to be reducing much. I thought it was side effects from the chemo, but I started to think it might be more serious.
I started checking ER times, but eight and ten hours was too discouraging. On Thursday I had my CT scan early in the morning. When I read the requisition, I realized that it covered the pelvic area - looking for bone metstasis to the joints. I thought the scan might give some clues as to what what was happening with the swelling.
After I got home, I decided to check ER time again. Two hours, I could do. A peanut butter and honey sandwich later, I headed in about 2:00 pm. With my red immuno-compromised card, I jumped to the head of the line. The ER staff isolated me in an exam room within an hour or so. I told the ER doctor that a CT scan including the pelvic region was done that morning. He accessed it but found that since it was a checkup scan, the BC Cancer radiologist hadn't read it yet. He got the the ER radiologist to have a look and a few minutes later, he came in with the news that I needed surgery, ASAP.
After that, things moved quickly. They gave me an hour to get my car home and pick up a hospital survival kit, including a book, my journal, headphones. My landlord gave me a ride back and when I went back in, the ER staff took me to the back and started an IV. By 8:00 pm, I was in surgery.
Feel free to skip this part. What I had, is known as a peri-anal abcess. A blocked anal gland had become infected and partially surrounded my anus. The surgery drained the abscess. Then a seton - essentially a rubber band - was inserted to keep the incision open while the abscess healed from the inside out. There will be another surgery in six months to remove the band.
I was lying in recovery after the surgery in a gentle hydromorphone fog when my phone rang. I see it is BC Cancer and so I answer. Again, it is my amazing oncologist: "Get to emergency, you have an abscess that needs immediate treatment." He laughed when I told him I was in the operating recovery area after having it drained. He let me know that I seemed to be responding well to the chemo. He didn't have the official radiologist's report and he reminded me that we would be talking on Tuesday.
When a room became available around noon, it turned out that as an immuno-compromised patient I had a private room with a beautiful view. Contrary to expectations, it was quiet due to the private room and a quiet surgical hallway.
Why there are so many complaints about hospital food, I don't know. Maybe it was the fact that I didn't have to cook it, but on the whole it was delicious. I did make a joke at one point about what the menu labeled as French toast. I lifted the steam cover and saw a mound of scrambled eggs and what appeared to be brown toast. My mind flew to "some assembly may be required." The next morning, the joke repeated itself. Some assembly would be required to make the egg salad that I desired from a whole wheat croissant with a hard boiled egg.
I had two experiences while I was there that showed me how broken BC and Canadian health care is. The first was waiting forty-eight hours for the surgeon to come and do the first packing change. The nursing staff expected her within twenty-four hours. But, it was the surgeon's flat, exhausted eyes and pallid, grey face that scared me. I was wondering if I should let her put her hands on me. Yet, I realized she was competent and professional and way over-extended when she said, "I've been up for thirty-six hours."
The second challenge came during the day on Friday. I was settling into my room when I got a call from the Fraser Health Authority. A nurse explained that they had received a referral request for follow-up wound care. I told her that I expected to be discharged on Sunday. Then, she dropped a minor bombshell. They could not schedule my daily wound care until the following Sunday. I was disappointed. She explained that I would need to use Urgent Care and failing that, go to ER. A few minutes later her clerk called to book the appointment.
I relayed this to my nurse who escalated the matter to the hospital charge nurse, who sent it on up to her supervisor. To them, as well as me, this was unacceptable. The system left me in limbo until Monday morning when a wound care nurse examined the wound. She devised a care plan that I could self-manage. The shift nurse packed the wound. My instructions were to remove the packing after my first bowel movement. I used a Sitz bath to soak and clean the wound at least twice a day after that.
I'm so fortunate in the friends that came to visit. A lung cancer patient brought me my first real coffee in two days and a treat, that was new to me "sugar apple." It is a fruit in the soursop family, but smaller and sweeter. Then there were my poetry friends, Nefertiti and Herb who came in Sunday afternoon for a couple of hours. Knowing they were coming, I texted Nefertiti, asking her to bring bananas. Despite not getting the text, she brought bananas, grapes, and strawberries; some reading material was also much appreciated.
After being released and for the first time in BC using an Uber, I came home. After a peanut butter sandwich, this time with banana, and sitting through four hours of meetings on zoom, I picked up the Sitz bath and my new antibiotics. I fell asleep the instant my head touched the pillow.
Yesterday I had a good call with my oncologist. His response was that two spots that were visible have resolved. The main tumour has reduced. The plan going forward is to give my immuno-compromised body a chance to recover and heal. One of the things I like about my oncologist is that we make decisions together; we are going to take a chemo break for a month. This phase of my treatment is called induction. Instead of having my fourth and final induction treatment next week, we will push it to the middle of July. It could land right on my birthday. Then we will go with another three treatments to make it six in total. This was on the table at the beginning, but with the delay, doing six treatments in total seems wise.
Thank you to all who reached out and offered help and support. It never ceases to surprise me reading comments about how many lives I have touched and the kindness that comes back as a result.