I just went and reread my post about my dad dying. Things have changed significantly between my mom and me and my brother and me in the last couple of years. My mom decided that my brother has enough of an inheritance coming from his inlaws and so the house is mine. My brother and I are on very good terms and I even went up to visit him a few weeks ago. His support in this is going to be essential. Some friends came over today and fixed part of our fence. I’ve given up all pretense of stoic independence and will accept any and all help.
There is an absolute ton of good advice here and I’m taking it all to heart.
I was going to jump into this thread and give helpful advice, but other people have pretty much said what I would have said, often better than I would have said it.
So I’ll just reiterate: You will get through this. It won’t be easy; but you’ll get through it.
– what maybe hasn’t been covered: for one thing, if she hasn’t already she should name a health care proxy. (So should you. So should everybody. Anybody can be hit by a truck.) And for another, she should talk to somebody in some detail – whoever she names as the proxy, but ideally also others closely involved – about what she does or doesn’t want in the way of extreme interventions. And yes, sometimes a feeding tube is an extreme intervention.
Talking about it doesn’t make it more likely to happen. And knowing that it’s been talked about can be a relief.
It’s been such a roller coaster of emotions. Exams, tons of bloodwork and a biopsy. I have to admit I’d pretty much given up all hope and was sure they would tell us it was too far gone and to prepare for her to die. We have been waiting for the biopsy results with a sense of dread and doom. The results are in and she has an appointment at the cancer society on Wednesday. Earlier today they called to send her in for more bloodwork before her appointment. The appointment is 2 1/2 hour drive away. Would they send her for more bloodwork today and have her drive so far away just to tell her that it’s too far gone and they aren’t going to treat it?
You’re catastrophizing. Which is normal and understandable. But is also unhelpful.
Do NOT try to divine the future by reading the tea leaves and omens and “If they do this it must mean that will happen / is happening …”
All of us who’ve lived through this have done that. Truly it’s hard not to. But it isn’t helpful. The future will unfold as it will. You and she have a lot of influence over that, by bringing a positive but realistic attitude into the treatment process. And by trying in so far as any human can, to not to burden your present with dire (or rosy) predictions about the future.
It’s good that you both have done the exams & biopsies & such. All that builds a sense of progress. You will find the medical process is frustratingly stop-and-go. Lots of flurry for testing, then a number of days of just waiting for results. Once a treatment decision is made by Mom & the docs, you may find another bunch of waiting. Or a treatment will be done, followed by a bunch of waiting to see how it works.
I personally found the “Rush, rush, rush then sit for 2 weeks doing nothing but waiting and worrying” to be the most torturous part of the whole process. It took years of enduring that rollercoaster before it became simply another emotion-free part of how the game is played.
Good luck & keep us posted. You’re doing well it seems. You’re gaining ground on managing your mind and your attitude. Presumably Mom is doing so as well.
I never thought I’d be so happy to hear my mom is going to have chemo and surgery but here I am. What a completely bizarre feeling to be crying for the “good news” that she’s having chemo. When they told us, it felt like all the blood drained from my head and I almost passed out. I was sure they were going to tell me that there’s nothing they can do and to take her home and help her die and I didn’t know how I was going to do that. It’s a terrible diagnosis but her lifespan can be measured in years rather than months and I will take it.
Yes, it can be weird to have the “good news” of chemo and surgery, but I hope it goes well for your mom.
There will still be bumps in the road ahead but there are considerable resources out there for how to deal with both of those.
Something I had never heard about until my spouse had chemo but that made sense in retrospect is that a patient on chemo eliminates the drugs through their bodily waste, including vomit and sweat. You don’t want to get that on you. In the case of my spouse they were using “old school” chemo agents that were pretty damn nasty. I handled soiled bedding and clothing while wearing gloves that were chemo-resistant (you need to check the box - I wound up ordering on line because the local drug and big box stores did not have the ones I needed), cleaned the toilet/bathroom sink while wearing them, cleaning the puke bucket, and so forth. It was another annoying aggravation but in the larger scheme of things also a small aggravation.
Whether or not you (or anyone else who may be helping your mother) need to take particular precautions, and what those precautions might be, are questions to ask the people giving her the chemo. There are a lot of different things used these days with different protocols, potential hazards, and so forth.
However, and please pay close attention, sometimes a patient’s body reacts badly to prescribed and OTC medications. If that happens, as it did to my mom on the laxatives, there are alternatives so be sure to talk to the doctor about it because you want to pick the right one that won’t affect other medications or be hard on your body. The cancer is hard enough.
With the help of a hospital nutritionist and the oncologist, we settled on magnesium malate supplements. This solution worked for my mom in her situation and I am NOT recommending it for your mom. Okay? The doctors really do need to know of any supplements she ingests and food she eats because of the effect they can have on the body.
Also worth noting that the difference in anti-nausea meds now vs 10 years ago is night and day. Many chemo patients suffered grievously from nausea before about 2005 / 2010. So if you’re getting “helpful” anecdote from somebody talking about treatments back then, they’ll be scaring Mom shitless when that’s probably an unrealistic concern today. Or at least much less of a concern than it was.
And as said about other meds above, there are a variety of anti-nausea (anti-emetic in the argot) meds. Each with different effectiveness in a given individual and with different possible side effects.
My late wife occasionally took one common one that gave her migraines about 1 time in 4. So we changed to something else that worked just as well w no migraines. We needed to “connect the dots” and tell the docs about our suspicions that there was a connection between that med & migraines. But they were quickly able to deliver an alternative once we suggested there was a connection.
Also, be honest with side effects. When I mentioned my neuropathy they responded by reducing the amount of one of my chemo drugs.
Also: very important. Lots of people get cold during chemo. Not me. By the end of it I am busy debating if an ice bath right there is kosher. Apparently this is not uncommon - I did ask.
If they suggest a port I recommend it; I don’t worry about being a hard stick anymore and that reduces stress.
I refuse to look up anything online on endometrial cancer. So much doom and gloom and outdated articles. My oncologist backs this.
Thank you! I’m passing on all of your information. She goes for a blood transfusion on Sunday. Her hemoglobins are too low so she has to have that done before chemo.
In 2000, my mother was diagnosed with breast cancer. She was lucky enough that all she needed was a lumpectomy, and not a total mastectomy.
She went in for surgery on a Friday morning. She checked herself out against medical advice the next day. She had me pick her up at the hospital, and drive her to another hospital. Her only grandchild, my niece, was being born via c-section that day, and she wasn’t going to miss it for anything in the world.
After the delivery, I dropped her off at her house. She took the weekend off, got up and went to work Monday morning. She was a nurse. She didn’t take chemo. During her lunch break, she would go get her radiation treatment, then go back to work.
The cancer never returned. Personally, I think it was scared of her after that.
ETA: she lived 15 years after that experience, and she passed from a heart attack.
My fingers are crossed for your mother. Ad everyone dealing with cancer. I have a good friend who has been fighting a glioblastoma for the last 4 years or so. She seems to be winning, at least for now. Glioblastomas are generally very aggressive.
I haven’t updated this for a long time because I just didn’t want to talk about it. But, after 5 really rough months, there is finally some good news.
So she had many sessions of chemo and I had to shave her head a few months ago. Surgery was scheduled then cancelled and more chemo was needed. She had to have 3 blood transfusions and scans showed 3 large lumps on her cervix and many, many little spots all over her abdominal cavity.
Surgery was rescheduled, she was prepped and they were rolling her into the OR when they changed their minds as her white blood cell counts were too low and they weren’t sure she would survive surgery.
Surgery was rescheduled again and finally on Wednesday they rolled her in and did the surgery. She didn’t have 3 large tumours, she had one huge one. They removed her cervix, uterus, fallopian tubes, part of her vagina and part of her stomach. Then the surgeon did some debulking of other areas.
I was told surgery would be from 7 - 9:30/10:00. I waited. And I waited and the hours went by. Nobody called me and at noon I started going around trying to find out what was going on. All I would get was “oh she could still be in surgery or maybe in recovery”.
By 2:00 I was sure she had died and they were waiting for the chaplain to come and tell me. I didn’t know what else to do so I just sat by the elevator on the 7th floor where I was told she would go after they were done. Every time the elevator doors opened I hoped it was her. At 2:45 finally, finally they rolled her out of the elevator. I just completely broke down because I really thought she was dead.
Ok for the good news. The oncologist thinks they got all of the cancer. I’m not getting my hopes up yet but she won’t die from cancer of the cervix, ovaries or anything else they removed because you can’t get cancer of something that’s not there. She’s still there now and will be for a couple more days. They did have a hard time waking her up and she did stop breathing a couple of times so they’re keeping her till they’re comfortable with discharging her.
They saved her life and I can’t thank them enough but their communication skills suck!
I painfully empathize with you. I suddenly lost my parents when I was 16, and I employed many of the same methods as you such as throwing myself into my school work and by having an insane social life so that I was virtually always with someone until I went to bed. I made sure that, when I did go to bed, I was so completely exhausted that going to sleep was like passing out.
I had a very hard time dealing with how they died and still do to this day. I’m afraid that never will be resolved because you’ll always feel that, if she fought, she might still be with you today.
I’m glad your horrible day of waiting had an optimistic result. Sorry you had to suffer through so many hours of uncertainty, but your mom came through it all okay.
