Mom is home again. She came back yesterday afternoon. She seems to have not been too impressed this time by the lack of, well, whatever she was expecting. The doctor previously made it seem as though she should bet pumped up there – nutrition, hydration, rest, etc. – but this never happened. It seems communication between the admitting doctor and the nurses and staff didn’t happen.
One nurse actually took Mom’s meds away saying, “You don’t need these now.” Now, when a nurse says your meds are no longer needed it’s because one of two things – you’re doomed or you’re cured. So obviously I (Justin) thought the worst.
As it turns out, so far as I know, the doctors were considering keeping Mom on Tarceva, her regular cancer meds, or switching up to a new form called … We just looked for it. It was thrown away. Can’t remember what it was called, but it was the newest version of the cancer drug available now.
When – not if, but when – Tarceva stops being effective, this other drug will be used. So it could be that the docs weren’t entirely sure what to do just yet. But to be told in the hospital by nursing staff that you won’t be needing them, this seems a little tactless.
Mom’s eating lots. I made steak, broiled potato cubes, and corn for lunch, and all three of us ate. Mom seems to be eating more than she was a few weeks ago. Her weakness in walking and other tasks is still there, but I don’t think it’s as bad as before.
She’s happy to be home but still complains about being tired.
Mom is now in hospital again. She was hoping to admit herself into hospital to gain some strength, a ‘boost’ so-to-speak. Floyd and I were talking about this. The last time she tried this, she wanted to leave the next day. No, she wasn’t tired there, but all she did was lie in bed and get up to use the washroom now and then – virtually no exercise, no activities (Wal-Mart, Tim Hortons), no real choice in foods, no snacks for when she gets hungry, and no family around her, and no sleeping at home. What will she gain in hospital? I’m not altogether sure. I hope she gains strength and weight while she is there.
She had her checkup with Dr. Brigdon, her cancer doctor, and he said the cancer is unchanged since last time. It might sound good at first glance, but she’s been on Tarceva seven days a week and was hoping the cancer would have decreased in size considerably; it did not. But this is only from X-ray, and X-ray doesn’t really show a lot of detail.
Mom says she cannot go on seven days per week of Tarceva anymore. It tires herself out too much. It robs her of energy. She says she’ll go four or five but not seven.
I’ll update everyone when I know more. I (Allan) will not see her this evening, but Floyd will.
Mom saw her doctor today. Here are some results.
The cancer has decreased a little, enough to be noticeable by X-rays. This is the result of being on Tarceva (cancer meds) 7 days a week now.
The home care nurse a few days ago said that there’s a new cancer drug similar to Tarceva called Osimertinib and that, should there come a point in time (and it apparently will come) that the Tarceva isn’t effective anymore, Osimrtinib might be the thing to try next.
She is usually pretty good when she goes in to see him, but this time she “was like a rag doll,” she said. The doctor, upon seeing her like this, suggested she should go into hospital to get some strength back.
While staff were looking for a bed, she & Floyd talked and came to the conclusion that being admitted probably wouldn’t do any good. She’s getting care – help to various places in the house, help with meds, food whenever she wants, company (Floyd & myself), gets out of the house now and then (Wal-Mart, etc.), and exercise enough to keep her going. She wouldn’t necessarily get any of those things in hospital to the same degree as at home.
True, she wasn’t tired at all while in hospital, but she wasn’t doing anything either. Besides, last time she went in to get stronger, she wanted to leave the next day, although she doesn’t remember this.
So, the doctor will call Wednesday of next week to see if she’s changed her mind. But for now she’s at home.
Mom got a visit today from two home care workers, part of the medical services plan. When she was in the hospital last time, they strongly suggested that someone visit her to “see how you’re doing”. Floyd and I understand it’s a good idea, in case Floyd needs respite to go shopping or go to an appointment, or if Mom needs help adjusting her meds, but she really didn’t think it was necessary. I was in classes and came in just as they were leaving. I asked a couple of times for specifics – “What did they talk about?” “Nothing.” … Well they can’t very well just sit and stare at the walls for 45 minutes. I take it they were just seeing how she was doing.
Mom’s diet and quantity are both pretty limited these days. There are lots of foods she doesn’t like anymore, and her appetite is limited.
She’s taking medication to improve her appetite. It’s working, but she still doesn’t eat much. The foods she previously liked, like peas and carrots … kidding! She’s always hated peas and carrots. That’s kind of an inside joke. We go to a restaurant, and she asks what vegetables they’re serving. If it’s peas and carrots, she tells them to keep it. Smitty’s is one place that does substitutions. They bring sliced tomato and something else instead. Anyway, pretty much everything she previously enjoyed doesn’t taste the same, so she just doesn’t enjoy eating.
So I bought some protein powder.
That did not go over well. It acted like more of a laxative than anything. Extreme proteins, like eggs for example, have never agreed with her. But she is drinking the juice concoction I made, which is good, just so long as it’s not mixed in with this protein.
Mom likes her orange juice, a lot more than the Boost non-milk-based drink (“Boost juice”). But an orange, especially one that has been juiced and now comes in a carton, is not a whole food – it doesn’t give full nutrition. I suggested a couple of weeks ago that I could make a drink with protein, vitamins, minerals, trace elements, electrolytes, etc. that the body needs. She balked at the idea because “I just don’t want it, that’s all.”
Last night I asked what fruits she likes and pushed to the end. “And…? Anything else?” Floyd would mention another fruit. Peach, for example. “I don’t like peaches.” “You eat peaches from a can all the time. You like them.” No solid conclusion to be made on peaches.
Today I mixed it up anyway – everything except the protein powder – gotta go shopping. She drank it and, at the end, scraped up the pulp from the glass and said, “I’m eating it because it’s expensive. Isn’t it?” “Yes, but you should be eating it because it’s good for you,” I offered. I hope this takes because it’s a bit more nutrition in her, and every little bit counts.
I was away in BC for 5 days and came back yesterday evening. Being absent for a few days, I noticed that Mom’s voice is really low and hard to hear. She just can’t push the volume out at all. She often asks Floyd to fill in when she gets winded telling a story. She’s obviously struggling for lung power and doesn’t have the capacity of even 2 or 3 weeks ago.
Mom is now on Tarveva seven days per week. The cancer has grown in volume and size considerably, according to her last CAT scan, so the doctor strongly suggested she use the cancer drug every day. As a consequence, she’s more tired than before and lays down several times a day.
In her conversations, it seems to me that Mom acknowledges that things are quite different now (since the fall several weeks ago when she broke her ribs) and that she knows she doesn’t have years like she once believed.
Last Thursday Mom and Floyd got a walker from the Canadian Red Cross.
Mom complained that it wasn’t as the doctor suggested – that it was all free – but that it was in fact by donation. As well, you don’t get to keep it. It must be returned to the RC when not needed. The RC suggested keeping it for three months. Mom felt that there’s a lot of misinformation given by the doctor and that she was talked into getting this walker.
As it turns out, she doesn’t really need the walker. It’s too cumbersome for use in the house. She’s better off using her office chair with wheels. Floyd pushes her around on it wherever she needs to go. She’s had it a few days now and thinks it’s really not useful.
So they’ll take it and the bath chair back, save the donation money, and buy a shower chair for $60-or-so from Shoppers Drug Mart or someplace.
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