Storyline: Thinking in Autumn Colours
It’s been a rollercoaster. A wonderful September weather pattern that we missed enjoying, with Alex in hospital and me between home and hospital. After the slow-motion of happenings during the first 3 weeks things start rolling really fast.
My mood is swinging between hopes and fears. I stare at the book I took to read during our unfinished road trip “Around the world in 80 trains”. Can’t even open it. Is all this over with? Do we have to keep him under a glass lid for the rest of his life? And how long do we have? There are hopes for his recovery, but lives won’t be the same. We’ll have to reinvent our daily routines. Mask and distancing introduced in Covid time will stay with us for different reasons. Perhaps many other things will change too.
Fri, Sept 24
There is light at the end of the tunnel and I finally feel alive. Today is the first day I cooked for me. Beef stew with carrots, mushrooms, broccoli and peppers. Enough for 8, but I froze some so my week is covered.
It was yesterday morning when the gastro doctor broke the news – the results from Sunnybrook point to his CLL. Back home and an hour later his hematologist calls and gives me the full story. His bloodwork has been good all along so he was surprised by the findings in the spinal fluid. Extremely rare situation. He said one on a million. And this one had to be Alex?!?
They are not wasting a minute. By the afternoon he was moved to the oncology department. Next day, the treatment had begun.
Mon, Sept 27
Today wasn’t a good one. During the visit the dietician asked if the pharmacy and CCAC had contacted us. This is to arrange for his feeding. CCAC has to deliver the pump and a bed and the pharmacy the food, before they can discharge him from the hospital. Wait a second. Didn’t the doctor say there is a roadmap for his recovery? Perhaps we both got our hopes too high, but we thought they’d send him home fully functional. We even talked about day trips with Doranya.
I had completely emptied the van earlier when we though we’d sell it. Then when they moved him to oncology, I start setting it back up and readying it for travelling. Not too far, but still out in nature. Looks like feeding tube is here to stay. They wouldn’t do the operation to insert the tube in the stomach if he’d be fully functional any time in the near future, the dietician suggested. That was my fear too. They could have kept the nose tube for a bit longer until his vocal cord was fixed. I ask if they can change the pump with another method, like syringes… Her reaction and explanation didn’t give me any comfort. They can try to increase the volume and decrease the time him being hooked to the pump from 18 hours to 14 hours. But it will all depend on his ability to tolerate it… And what about power outage at home which happens very often. How is a pump going to work then? Down the road the goal is to move him to 3 times a day for 2 hours.
Tue, Sept 28
Not a good day either. He had what appears to be his last chemo in the hospital. I was there when a doctor in charge for the day was there. She said they were sending him home on Friday. Wait a second, his follow-up drug chemotherapy has not been tried yet through his feeding tube. We don’t even know if it is possible to do it this way. “What follow-up chemo drug?” she asks. “He can take it through the mouth. “ “He can’t swallow”, I say. “Even a pill?” she continues. Really? Well, she is the general oncologist taking care of everyone on this floor. So perhaps it doesn’t click fast enough.
Later in the day the pharmaceutical company calls me. They are arranging for his chemo pill through the stomach. They’ve called me a few times already.
Wed, Sept 29
I haven’t slept. Alex neither (chemo side-effects–A). We both have our challenges. He may be discharged as soon as this Friday. I have millions of questions. And the chemo drug for life hasn’t been tried yet on him delivered via the G-tube.
According to the speech pathologist there is no hope in hell that he’ll be able to swallow anytime soon. And since the paralysis is neurological rather than physical, nobody knows if/when it will ever return to normal or near-normal.
I have 2 lists of questions – one general around his discharge and home care and the second one for his hematologist.
Thus, Sept 30
Finally, a call from CCAC. I bombarded her with questions. Unfortunately, they are not providing much at all. No bed, but he doesn’t need it. No, no distilled water. Tap water is good enough. A stand, a pump and a reusable bag for the food. Oh, and a syringe. That’s it!? So, what if I drop the bag or the syringe? Not even a spare? No water bag either. In the hospital they have 2 bags. One for food and one for water. Water at home has to be delivered manually via the syringe. Everything has to be in place at home before they discharge him. We arrange the CCAC delivery for Saturday. So, no Friday discharge.
Fri, Oct 1
As I expected their Friday discharge was a bit too optimistic and completely unrealistic for many reasons. It won’t be even Monday. The previous chemo drug has to be out of his system before they start the new one. Samples of his urine are sent to Sunnybrook (A larger regional hospital with more lab facilities) for test twice a day.
Alex’s hematologist was back from his vacation yesterday. (He had arranged everything on Sept. 23 via the phone while on vacation and the oncologists were taking care of Alex’s treatment). We talked yesterday and he answered all our questions (Alex had put me on a speakerphone while he was visiting him). There is a great hope. They are giving him the best available treatment. If everything goes well, we can be back to normal. Timelines are not given though. It all depends on his reaction to so many things. And this being so rare there isn’t any other case they can compare with here (A colleague of my oncologist at Sunnybrook has treated some similar cases though, so they are not entirely in the dark–A). He may need a second round of chemo if a spinal fluid test in about 3-month time shows that CLL is still present in the spinal fluid. But hopefully this will be it. The worst-case scenario? I don’t want to think about it, but if they can’t get the cells out of the brain… No one knows. Again, this is a case they’ve never had. They don’t know what could happen then…
Today I met the hematologist. A nice guy. But Alex said he was concerned over Alex’s persistent headache.
It was a busy day for me. I’ve got training from the nurse on how to do the syringes, deliver drugs, flush the tube, etc. Then the pharmacists came with all the side effects of the chemo drug and a WBS (work breakdown structure, aka workflow) for the actions we have to take. Many of them involved – Go straight to emergency! By the end of it my head was spinning. And since Alex was on his hydromorphone, he didn’t give a shit of what was going on. (Flying, free as a bird, I was. Not really. I cared and listened intently but was too tired to physically participate-A).
Cherry, his nurse today, was really nice. She did the syringe training. The one they were using was quite hard for my arthritic hands to be able to push. Perhaps this is what CCAC will deliver to home tomorrow, because it has measurements. But I wasn’t able to use it. Then the nurse said – don’t worry, use this one and opened a box with a bottle and a syringe without measurements. And yes! It worked. Much easier. Then she brought me two of these boxes to take home. Thank you so much Cherry.
So now I am a nurse in training and home care specialist. And I thought I was retired.
Next post will be from home, I hope.
Alex:
I have to say that it’s much easier to be the patient than the caregiver. I’ve slept through much of the goings-on; I have no role in preparing for my return home; I participate here at the hospital in making sure the little details of the day don’t fall through the cracks; I watch the food delivery procedures and make sure I can play my part when home. Mainly I rest, read, watch videos or sleep. I’m constantly aware of the burden that is on Diana and am ever grateful for her being in my life. Together we’ll make the best of the life we can have.
Adventure? Ordeal? Attitude? Well, we also need to include perspective. The perspectives and experiences of carer (Alex’s British accent – D) and cared for are totally different. While I wouldn’t seriously account for my current situation as an adventure, neither would I give it ordeal status. It just is what it is. I’m pretty sure that for Diana this has been and continues to be an ordeal. I need to keep reminding myself to ease her burden where and when I can.
Join the conversation around our e-Table