Most of you saw my postings in this month’s mini-rant thread. @LSLGuy and @puzzlegal suggested I start a separate thread so as not to overwhelm the first one, and I think that’s a good idea.
OP is here. There’s several more, either by or to me, in the rest of the thread.
Current update: I was supposed to have my first infusion today. Once more it was canceled, not because of glucose this time but because my hemoglobin is too low. Did they not notice that from the last time or did they focus too much on the glucose number?
The cancer doctor is certain I’m bleeding somewhere, but there’s been no sign of that in either urine or stool.
He sat there muttering, “where’s the blood going?” and then asking me if I was certain there was nothing showing in my urine or stool, which I kept telling him was the case. And then we’d repeat the sequence. So now they want a stool sample because I gave them two urines today.
That phrase “where’s the blood going” may show up in my dreams.
At this point I’d call the whole thing someone’s twisted idea of a farce, but I’m a real girl, I am.
Next week I’ll likely be going in on Monday for the blood work and (if necessary) another transfusion. Then Tuesday for the INFUSION. Here’s hoping that works.
LSLGuy, I’m going to use your clothing suggestions next week. I think I was a bit too casual about that. I wonder if they’d let me use a hot water bottle?
Having to delay treatment for low hemoglobin numbers is not unusual. And then doing a transfusion one day followed by infusion the next is the common way to address that.
It often seems like the medical throat-clearing and deck chair arranging takes longer than the doing. Which is understandably greatly frustrating. All I can say is lots of people have similar hiccups getting out of the starting gate. They’re unhelpful, but they’re not uncommon.
One of my cousin’s told me her husband also didn’t have blood in his urine or stool (kidney cancer), but that when this happened it meant the cancer was using the blood. Another said that the blood thinner I’m on may be causing the lesions to bleed, but I’d think there’d be more external signs.
Take a charging cord and, if they let you, snacks. The Benadryl makes me snooze.
You can ask about a hot water bottle. Be aware you might overheat. I do. The first time I sat there in my chair, watched everyone else snuggle under blankets and freaked out quietly as I tried to figure out if pouring ice cold water over me was kosher or not. When I asked the nurse shw was “yep. Some overheat.”
The best seat is by the bathroom. Honestly, think about Depends. Chemo can play serious havoc with your digestive system.
I have Depends. I also have a PureWick external catheterization for women kit, which has been a godsend for overnight. I need to learn how to apply the wick myself, though.
I think I have things more or less under control, bladderwise, but it’s been pretty dicey for the last month or so.
Whatever happens, I don’t have to clean it up. I feel sorry for the nurses though.
Morgyn, I’m so very sorry to learn that you are fighting this awful cancer. I wish you the very best outcome and as easy a time going through it as possible.
Getting up and using the bathroom during a transfusion or infusion is perfectly normal & doable, assuming you can walk unassisted or with a little help. The trans/infusion rig is the same sort of pump as an IV in the hospital and it’s on a wheeled pole. Dragging it to the bathroom with you is tad undignified, but no harder than dragging a small dog. Which people do in bathrooms at the mall all day every day.
Nobody there as a patient hasn’t done it themselves, and nobody who works there hasn’t helped somebody to it twice already that morning.
Honey, you know that I am here for you no matter what you need. I love you and wish I was still in the NE so I could be more help than words on a screen. But you know that Verrain and I are both sending all the love that we can.
Yep. I noticed lots of first timers wander the infusion room. Looking at the wig/hat catalogs. Checking out the snack table. I did it. But I prefer to sit and read my kindle. Except when I’m hitting the bathroom. Because that’s a lot of liquid they get into you.
If you want to watch videos, be nice and take earbuds.
Ahh, hell. Thank you for sharing your experiences, Morgyn. I have some risk factors for pancreatic cancer so I’m particularly interested in following your story. All the very best to you, and please know you are doing some good by telling us what you are going through.
I can confirm this. My spouse had that happen, too. And when he mentioned it in the infusion room half the people chimed in saying that they had had that experience, too.
In my spouse’s case where the blood was coming from wasn’t a mystery, but it still required a transfusion and rescheduling. Chemo can have weird and varied effects. Don’t be afraid to ask the nurses, they’ve seen it all and heard it all before, and they’re there to help you if you need it.
Don’t be afraid to ask for help.
I don’t have much to offer here other than best wishes. I’m so sorry you have to go through this.
Oh, yeah, the nurses where I go are awesome and if they can’t answer a question, they ask a doctor. They’re also.fast and professional in an emergency.
During my first session a nurse sat with me and went over everything - they rushed me into chemo - and I noticed they didn’t mention if cold items were okay. So, thinking of ice cold soda and water, I asked. The nurse responded “if you have to eat ice cream to get through chemo you eat ice cream”.
So did my diabetic spouse. Again, let the nurses know your concern. Although blood sugar monitoring and management is yet another factor/wrinkle to consider you aren’t the first person to deal with this.
Anyone undergoing chemo, please remember the chemo nurses have seen it all. Probably that morning. Whatever it takes to get through it, do it, bring it, or eat it. My chemo was at the height of the pandemic so I didn’t bring anyone with me, but I had my tablet and two friends lined up online to talk me through. For me, distraction was and has been the key.
I hope everything goes smoothly, Morgyn. You and everyone fighting cancer, as well as their caregivers, have my utmost support and empathy. I have been there and am there, so I have an idea of the complex, scary range of emotions. Hugs.