STEAM ROOM FOR ANGER

AlwaysMeC....Please feel free to pm me. I am in the same position with my husband. The road has not been easy and I have done it all alone. If I can support you in any way I am happy to. Sending you hugs.

This is awful of me to say and I will go to hell for sure, because my girlfriends have been so patient and so supportive as I flail about like a scalded cat, with no dignity and no composure as I panic over uterine cancer. But today one of them sort of ticked me off. It was not meant to tick me off, but it did anyway. Yes, I am overly sensitive at this time, like a tightrope ready to snap. 

Believe me, since this uterine cancer thing came up I have been doing research, looking up documents, reading studies, listening to podcasts and not just stories about surviving, but the science and medicine involved. It's a lot. I have learned a few things. I have learned that pelvic radiation is a dirty bitch of a treatment and the long term debilitating lifetime effects have been vastly UNDER-reported and vastly OVERLOOKED by medical people and in many cases the gained life expectancy is not a clear advantage over the known dreadful effects. I have pretty much decided at this point that I will refuse all radiation. I know...when the cancer god stares me down in that double dog dare of what I will do to stay alive, I may knuckle under and change my mind. But for now I'm thinking if I have limited life left I do not want to spend it pissing and shitting myself in public. I read a recent study in which docs were shocked to hear that at least 80% of pelvic radiation patients have lifetime effects that they consider debilitating and that have in some cases made them recluses and shut ins as the worry of publicly crapping their pants has ruined their life. No doubt. I don't want that. If I have X years left, then quality of life is the big issue, not quantity. I have thought about this. I have looked into this. I have tried to find where they say, all side effects of pelvic radiation are easily managed. You will not find it. Because in most cases it is not true. There is little than can be done.

So today girlfriend is blabbing on about how her friend took radiation and it hasn't affected her a bit and that was 26 years ago! And I'm thinking, you know nothing. You have no idea what miseries your friend walks around with on a daily basis. A sex life that is ruined because her vagina slammed shut?  Bowel and bladder incontinence?  Digestive issues due to cooked guts? People don't tell these things to their doctors because these are awkward, personal problems and they are finding they are grossly under-reported. But here's my friend, who has not done any research into it, telling me that because her one friend seems to be unaffected, I shouldn't give it a second thought. And it pissed me off. It seemed glib and flippant. It seemed like my real concerns were being brushed aside. 

Yeah, I'm tense and bitchy right now. She means to be encouraging. But jeez. 

Rumor, I had uterine cancer in 2008. Endometrial, but it had burrowed in a bit, so technically uterine. I had a thorough hysterectomy and that's it. No chemo, no radiation. A surgery that left me a few stabby spots on my belly, home the next day, and about four weeks off work. Except for a short fight with swelly belly creeping across my lap because I didn't walk enough due to a rotten hip, it was mostly just boring. No reason yours will be any different.

Hi Runor,

My mom had uterine cancer. She had a hysterectomy followed by high dose brachytherapy which is a very targeted treatment. External radiation will definitely affect the bowel and bladder but brachytherapy does not at least to the same degree.

Keeping you in my thoughts,

Jane

runor....I hate you are having to go through this and I hope you get answers and a treatment plan soon. Your feelings are valid. Vent as much as you need to.

runor, I'm sorry about the comments your friend made. I think they mean well, or are trying to bolster us up by their stories (so-and-so went through chemo and she never missed a day of work...) It doesn't help, though. They either piss us off by telling us stories that have NO relation to where we are, or they look at us like "Why aren't you dead yet?"

I totally get it about not reporting stuff - I mean who wants to tell your doctor that you can't control your bowels sometimes? It's embarrassing!

On the hysterectomy thread, I wish that I had had them take my cervix at the same time as my uterus. One less thing to worry about. I'll be waiting to hear your report after you see your doctor this week. (I think it's this week. I can't keep things straight in my head.)

(((hugs)))

Carol

Another death is coming. Brother in law was put on hospice care yesterday. Liver cancer. This is my husband's sister's SO. They live in WY 2000 miles away. They just sent some pics from UT where they did an Easter family vacation. Looks beautiful out there. I'm afraid I cannot muster my caring self to get on a plane and go out there. Surely I hope the family understands. I can't do it. Spoke to her this morning, she will be taking some time off work, and she has 2 other brothers and their wives that should arrive there this weekend. She has her kids as well. Trust she will have enough support. Huge sigh

Thanks runor. Hubs other sister that lives here by me were in the beginning plans of taking a trip out there soon with this family stuff that she wanted. We were going to drive out and fly back. Now, it's definitely not the time for that. It's just stuff, and it's fine just sitting there doing nothing. At least I 'm not paying to have it "sitting there doing nothing" Anyway, I sort of feel like it's expected since we had previously mentioned this, but hopefully I'm wrong.

I certainly understood her not coming to see her brother. You are right, being private is so much better than 1000 people running in and out. If there is ever a silver lining of dying in a pandemic is that I found I actually prefer invite only funeral (we had less than 30) and they were mostly all family anyway. Not having to see some old friend that I didn't care for waiting in a line at a funeral home crying and snorting all over me and my kids telling us how much he or she loved him after we haven't seen you in 20 years! No thanks, so glad it was quiet and much more peaceful.

I'm in your pocket this week and with whatever turns out to be, you know that. Reach out if needed.

Thanks. Wonder if the good Lord will give me/us a break after this one? I mean it's excessive deaths although I haven't counted them. I'm not even 60 yet~!

ctmbsikia, I'm so sorry. Too much death. I completely understand why you don't want to travel there, and hopefully everyone in the family understands too.

ctmbsikia I am so sorry to hear. I have a dear friend here who lost her mother in law recently and the funeral home did an online memorial thing so everyone could participate since they was no way everyone could make it there with COVID. That way they could all participate and even got to contribute themselves through a "zoom" thing they set up and share thoughts of her as well. Maybe something like that can be done for your brother in law in Wyoming?

I know Wyoming is different too since my daughter and son-n-law live there and often do not have all the services available to them as if you were in a "big city".

LW422, after I finished chemo, my weakness was so great that it was a thoroughly appropriate question for me. I never fell down, but I sure did SIT down quickly several times. So perhaps it has nothing to do with your age and a lot more to do with your stage of treatment.

they're screening for everything incl metastatic recurrence. Muscle weakness, bone frailty, neurological symptoms, psychological well being ...these are part of an assessment and every good health care provider should be doing them. Cancer pts remain vulnerable forever

one of my kids is mad/sad and I'm mad/sad on their behalf. Stupid world threw up a roadblock in front of them and it's not a major thing in the big scheme of things but a huge stressor for the kid

and highlights - alas - some weird perfectionism and over-responding to obstacles

So i can feel bad about doing a bad job as mother too I guess

Yeah, I'm just venting. Stupid cancer.

My DIL is Canadian but lives and works here, married to our daughter. She said CA health care stinks... long waits etc. Some people come to WNY for their care but with the border being closed.. On the other hand my SIL who has lymphoma went to the ER today (her and my brother have covid) was having trouble breathing, fever, cough sat 8 hrs on a stretcher. They did a chest xray and lab work but never came back to give her the results. She ended up walking out. Even after telling them she was leaving they didn't give her any results or ask her to stay. So WTF.