My Husband Has Bladder Cancer [sad update]

Miscellaneous and Personal Stuff I Must Share
61

Broomstick:

Here’s my personal experience with platinum-based chemo. (Notes: The one I was on was Oxaliplatin, intravenous once every 3 weeks from July through November 2015, for colon cancer; YMMV as everyone reacts to things slightly differently; and I was also on Xeloda and Avastin, which may have altered things somewhat.)

Okay. Oxali basically kicked my ass, and it kicked my tumor’s ass as well. The side effects were kind of random - after one treatment I would be fine, the next I would be bedridden for 4 days after chemo, or I wouldn’t be able to poop for a week, or I would only be pooping for a week. The Wheel Of Side-Effects was always…fun.

The first major symptom I got was the nausea - I was throwing up for a week after every treatment, 3-4 times per day. At the time I thought that was to be expected and I’d have to tough it out, but the folks in my support group told me to tell the doctor and they could give me IV meds for it. (Oral meds were no good cos I’d just throw them up again). I did so at like my third? Fourth? treatment, and it made a huge difference.

Other than that - I would alternate between painful constipation and diarrhea for about a week and a half to two weeks after treatment. Neither of which was fun. I was also really, really sensitive to the cold, especially in my neck, hands, and toes. One of the things they warned me about was to not drink cold drinks, as it would create a sensation that I was unable to breathe. It did, but thanks to the warning I didn’t panic. I still don’t like cold drinks.

Other than the poop issues, the main problem I had was that I had really bad neuropathy. It wasn’t painful (for me; for some people it’s excruciating) , but it was pretty scary to lose my sense of touch in my fingers and toes. The fingers got bad enough that I couldn’t do up my own buttons, put on my own jewelry, type, or use chopsticks; the numbness in my toes meant that I was stumbling a lot. I never fell or even rolled an ankle, but it was a close thing sometimes. As treatment went on, the numbness spread up to cover the palms of my hands and up past my knees.

That was the bad part.

The good part was that the tumor responded to the chemo exactly the way it should - by shrinking like crazy. I lost track of how many treatments I had, but after 5 months the tumor was much smaller and the tumor markers in my blood were down in the normal range, so they took me off all the chemo for 6 months to let my body recover. During those 6 months the neuropathy slowly got better, till it was down to the tips of my fingers and toes. When the numbers went back up, they just put me on the Xeloda and the Avastin, and I’ve been on those two in various combinations and dosages since May. The neuropathy has crept back a bit, since it’s a side effect of the Xeloda as well, but it’s much slower and not nearly as bad.

I hope this helps. Oxali was hellacious to be on, and a couple times it was so bad that I considered stopping it and letting the cancer take its course. I am glad I didn’t, though.

I highly, highly recommend getting in touch with your local branch of the Cancer Support Community. They have been a godsend to me as I go through all this crap. All their services are free, and they have not only very good support groups for both cancer patients and their caregivers (separate ones, often held on the same night, so you’re in a group with someone in your same situation), but also classes on everything from diet to tai chi to filing for SSDI to fighting with your insurance company. They’re good people, and there’s no religious blather to deal with if you’re not into that sort of thing.

Please let me know if I can help you in any way. Send a PM if you need to. If I’m gonna have to go through all this, I might as well use my experiences to help others, ya?

62

Well, if it’s as bad as you think, I hope you have the chance to put your affairs in order (as they used to say) and get more time than expected with less pain than expected.

Have you ever watched the scene in Dr Who where Ten is about to expire and knows it must happen - he hears the knocking - but still, there’s so much to be done? He beats against the doors of death even though he knows there’s something on the other side. In his case it’s a literal reincarnation and in real life, who knows; we all beat upon the door. I hope you do, loudly.

63

Thank you. They’re in order, and half the time I’m ready to go, and the other half my mind is silently screaming, “I’m not ready!!!”
I’m not afraid of death, but the process of dying frightens me. I’m pretty much a wimp. And I think my throat will just close up little by little, so I worry about getting my pain meds. We tried a feeding tube for a bit. Lots of infection that was extremely difficult to get rid of. I’m finally out of the woods there, I think.

I just don’t want pain, but there’s no guarantee, as you know, and it’s not like I have a choice. I guess time will tell. Please say a prayer that once the inevitable slide to the end starts, it’s quick and easy.

64

Better.

The new anti-spasmodic has done the trick. Oh, he’s still sick and still feels crummy, but he’s functioning better, a bit more steady on his feet, getting slightly more rest. Right now I think that’s the best we’re going to get, until we get further along in the process.

Spent a lot of time yesterday on everything, and have to get to work this morning, so don’t have time to follow up on the rest of this thread yet. I’ll check in again later.

65

Just saw this today. I’m so sorry, Broomstick. I’ll add my good thoughts and hopes for the best possible outcome.

66

Oh, dear Og. I hear you. I worked through my treatment, and if my days off weren’t filled with doctor visits, it was hours on the phone with insurance or specialty pharmacy “customer service.”

Good luck and stay positive.

67

Definitely. Also, if you have a good friend who will listen without judging, and take you away from it - to the movies, to lunch, for a walk in the woods. There are points in this process where you’ll want to scream “BUT WHAT ABOUT MEEEE!” and to outside ears it sounds horribly selfish. But caregiving can mean losing yourself.

Also be aware of the stress of the caregivers to the caregivers. My husband and his mother were primary caregivers, but to do that meant my father in law and I picked up a lot of stuff for them - my kids were tweens, I was working full time - and suddenly I was a single parent with a very needy husband. I needed someone to notice. So if someone does help pick up your slack, make sure to say thank you. It sounds incredibly selfish, but it was hard on me. And then when I struggled, it was my mother who picked up my slack, and the shit just kept rolling downhill.

68

Oh, the other thing about bladder cancer - its relatively rare - especially in people who are under 60 (I think you are in your 40s or 50s?). So don’t expect a lot of support networks and marches and pink shirts. (The color for bladder cancer is yellow). It also means that there isn’t a lot of money thrown at it for research. In real life you may be the only person you know to be going/have gone through this. For some reason, this really annoyed my brother in law - who envied the women with breast cancer because they had each other and a rally and yogurt.

69

The spouse is just shy of 60 and has several factors that put him at higher than average risk for this (which I was unaware of until this past month).

Frankly, I get annoyed as hell at the colored ribbons and marches and stuff. I’m not entirely convinced it’s as helpful as the promoters say it is. I mean, if I want to donate to a cause I write out a check directly to it, but maybe that’s me. To add insult to injury, someone keeps calling us about donating to breast cancer, with a cheerful approach and script more along the lines I’d expect from a friend. We are dirt poor, we have no money (the suggestions of going to the movies is appreciated but probably not in the budget), and this being yet another call during dinner, I really unloaded on her. Just sort of snapped and yelled at her to take our name/number off her list, don’t call back, we don’t have money, I have a sick husband, and if she isn’t his doctor or calling to give US a shitload of money STFU and don’t call back.

Probably not my best moment, but right now if the phone rings and it’s NOT a medical professional or something willing to help I get pissed. All those soliciting calls (and YES, we ARE on the “do not call” list, much good that it seems to do…) and scams are REALLY cranking my handle.

This morning I called our nurse advocate with some questions and was expecting a call back… and what we got (so far) was some asshat credit scam. Broomstick ANGRY! Broomstick SMASH! (Not really - no damages - but I am pissed off).

And no, we’re not the only people - one of the managers at the local laundromat had her husband go through bladder cancer 2 years ago, and he even had the same urologist. In fact, both he and the husband had doc appointments at the same urologist an hour apart yesterday. Yes, she’s on my support list. But my husband’s cancer is progressing differently than her husband’s did, so it’s not quite the same thing.

70

I know money is tight which is why I said “walk in the woods” - you need someone to get away with from time to time, and don’t let money become the barrier.

I don’t think “awareness” necessarily does that much either, but it is annoying to see the focus on something other than you when you’ve been punched in the gut.

71

Oh, good grief. :smack: Why didn’t they just make the colon cancer awareness color brown while they were at it.

Broomstick, I (obviously) have nothing constructive to add, but I am sending get well wishes to your husband and you’re in my thoughts as well. Hang in there, and you’re in my thoughts as well. :slight_smile:

72

Check with your phone company. You might have some kind of call blocking service available. I discovered that this fall when I was about ready to Hulk out myself when I had a relative in the hospital and the campaign robocalls AND the scams AND the charity solicitations seemed to triple in frequencty.

73

I saw this when you posted it, Broomstick but I didn’t know what to say…

HUGS You will be in my thoughts & prayers.

Would he like some cards?

74

You are in my thoughts.

75

Riiiight… three guesses who in this household normally takes care of this and it’s not me… I’ll have to ask him later how we do this.

Thanks for the thought, but he’s not really a “wants cards” person.

Billy! Haven’t heard from you in ages. And thank you.

Oh, and the nurse advocate did call back with answers to my questions and some “atta-girl’s” for me.

76

You can also check their website or google “[insert company name here] call blocking,” that’s what I did.

77

I had a one-in-a-million cancer (Appendiceal cancer with pseudomyxoma peritonei) and I felt exactly like your brother-in-law! Seeing all those women who had each other was even more isolating. Then, of course, there’s guilt because after all they do/did have cancer. Sigh.

78

Broomstick: I never know what to say in threads like this. I just want you to know you are in my thoughts.

79

I think its reasonable. And the people I have known with breast cancer (my sister is a ten year survivor) do acknowledge their good luck in being able to tap into a huge network of survivors and current patients. There will be someone in town, or at work, or a relative. When we went in to keep my brother company during chemo, there was pretty much a “breast cancer aisle” of women who were all on the same schedule.

One of the shitty things about cancer is the unreasonable guilt. You feel guilty that someone else’s CANCER gets more attention. You feel guilty taking a day off from being a care giver. You feel guilty as a patient that you are such a burden to everyone you know. And if you become someone left behind in its wake, you feel guilty about the sense of relief when its over. Its a disease where there is a lot of guilt to go around, and it doesn’t help when clueless people ask what you did to get it.

80

The husband was reasonably coherent last night, but today was a Bad Day. He was in pain, he alternated between goofy from pain and goofy from painkiller. It was bad enough I didn’t feel he should be left alone this afternoon but I had to do errands. Our landlord came by to sit with him, I got my errands done, and the husband was coherent again when I returned - after a day of medications and pushing fluids on him (the nurse advocate suggested that, as dehydration might have contributed as well to all the goofy).

The bits where he kept asking “What’s wrong with me?” and “Am I dying?” were particularly trying. The throwing up mid-morning sucked (and he’s not even on chemo yet). He had another bleed last night but tonight his urine is clearing up. He keeps asking about going to the hospital but honestly I don’t see where sitting hours and hours in an ER waiting room until they finally get around to him is any better than lying bed at home. He’d be in pain either way.

I don’t know if I’m going to be able to make it in to work tomorrow. Top priorty is getting him to his oncology appointment tomorrow afternoon.