had my first appt

Posted by MommaCandy @mommacandy, Jan 27 8:19pm

well i gotta say, i'm a little overwhelmed.. i finally got an appt with UVA, was supposed to have been Jan 31...they called last Mon asking if I wanted to take the cancellation on Wed...ABSOLUTELY!!! so i went in on Wed, had initial consult, exam etc and boy did they move from there...which i guess is a good thing....
yesterday i had lab work done, a chest xray, CT scan with contrast AND a biopsy all in one day...i'm TOLD one of the samples from the biopsy will be going to Mayo...idk why....but hey i'm ok with that...
they have me scheduled for a "total abdominal hysterectomy, bilateral salpingo oopharectomy, omentectomy, tumor debulking, possible bowel resection/possible colostomy and all other indicated procedures" ...Thats taken straight off the consent form i signed...basically from what i understand they are emptying my pelvic cradle of anything to do with reproduction, a fatty tissue layer, any lymph nodes in the area and all spots of any kind of tumors...
depending upon what the biopsy shows i guess as to the KIND of ovarian cancer it will determine whether they prefer surgery first or chemo first. the two chemo drugs being looked at carboplatin and Paclitaxel or something like that.. anyways, they ran a CA-19 which came back at 7 and a CA-125 which came back at 1536
so just waiting on CT and biopsy results...
so has anyone has this detailed of a surgery (Dr called it a radical hysterectomy) and can give any tips? as it is, it may still be postponed but trying to prepare mentally...

Interested in more discussions like this? Go to the Gynecologic Cancers Support Group.

ok i know this is gonna sound weird to yall but i don't feel normal sitting and doing nothing...i've been way too active for too many people for too many years to be content "resting" and doing nothing and tbh i'm starting to wonder if i wouldn't be better off pushing myself to drop dead exhaustion. Its almost like if i'm busy doing things i don't have time to think about what is happening esp this metallic taste that is literally driving me bonkers...i've never been a "hard candy" person and honestly food is anything but appealing atm i'll eat 3 or 4 or 5 bites of anything and i'm done...anything more and i feel like i want to throw it back up.....and i'm wondering if that is because all of a sudden my caloric burning has dropped to about nothing...i've been forcing myself to eat a couple bites of something every hour or two even if its only a few berries..no i don't have massive amts of energy and that trip i took yesterday wore me out and i STILL struggled going to sleep which is not normal either...even my vet friends swear i could drop to sleep with the best of the them at the drop of a hat and have been asked if i was sure i was never in the infantry... but i noticed yesterday while i was busy doing things outdoors and so forth it distracted me and computer and phone games just don't work the same way for distractions, nor does crocheting or latchhooking or whatever... surely i'm not the only person out there that feels this way....am i?

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@naturegirl5

@mommacandy You came to right place to vent as we all understand how it feels to be diagnosed with cancer, the surgery, the treatments. While I am certainly grateful for the wonderful care I received from my cancer care team I did not want to hear about anyone else's woes or their whining while I was being treated or recovering. It's very possible that your husband doesn't view his whining as complaints. Maybe he believes he's just sharing? You know better than me but when you are the rock and the fixer for everyone else sometimes they just can't get it that you are the one who needs support. I call this "pulling out the cancer card". As in "I can't do that because I'm nauseated from my chemotherapy" or "I don't have the energy to get up and do that because, you know, I have cancer".

I had a conversation with a friend today who was diagnosed with bile duct cancer (cholangiocarcinoma) the same year I was was diagnosed with endometrial cancer. He said he would have been dead had he not had the expert care he received and ultimately a liver transplant. He said he rarely talks about any of this because other than his wife who would he talk to? The listener can express their compassion and empathy but the experience of cancer diagnosis, surgeries, treatments and in his case a transplant is outside the experience of many others. So, we have to ask for what we need and sometimes we have to do that more than once. Or say "no" when we can't do something.

Maybe I'm just blathering on here but I hope that your husband will get it that you are not used to being a person who "rests and does nothing" however for now that is what you need to do.

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@mommacandy
Gynosaur weighing in to express my own annoyance with partners whose "sympathetic pregnancy, cancer, chemo, etc, symptoms" seem to overshadow the actual patient's symptoms and suffering. What a way to express support! We can (only gently) joke about this at our house when I am healthy (and therefore my partner is at peak health and sense of humor!). I once offered to ask my surgeon if he had time available in his schedule to squeeze my husband in for a radical hysterectomy before he got to me, since my husband's symptoms seemed worse than mine. (He complained of exhaustion and low back pain when I had been in labor for 20 hours, too...as if I was lounging on the couch, watching re-runs and eating bonbons!). I don't recommend irony as a rule, but found, in that case, that a "pointed remark" was all that I could manage (and did get a message across, although some repair was called for afterward).

I have read that couples develop unconscious, unspoken contracts, such as, "I help you feel good about yourself by letting you take care of me," or, "having physical pain or injury is the only acceptable reason for asking for care," or, "you reach outward for support and I get all of mine from you, so you can't be sick," or, "we don't talk about ______." It is times like these when those contracts become more apparent and MIGHT be ripe for conscious, explicit re-negotiation. It seems to me that my cancer has "provided opportunities" for me to learn how to ask (in direct ways and until I am heard) and to compassionately and generously (to myself) allow myself to receive from others. My husband (and our relationship) has grown a lot in the context of my cancer diagnosis, surgery and ongoing recovery/surveillance.

I truly hope your husband gets himself together (maybe he needs to seek emotional support for himself from others for a minute or two...) and becomes able to support you in all the ways you deserve! This is a pattern that does not help you and you deserve warm, kind, responsive help from as many around you as possible, starting with him!

Wishing you through this...

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Going through chemo for the second time, I have found work to be a great distraction. I surprise myself going to work, then at the end of the day, thinking to myself, “Wow! I haven’t thought about cancer or chemo or cardboard food all day !” For some people, throwing yourself into something or someone else can be therapeutic.

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@gynosaur42

@mommacandy

I am sorry to hear that you are facing such a huge struggle and that your family has faced so much suffering and loss over the generations. I so appreciate all of your sharing!

I haven't yet seen anyone give tips on living with metallic taste or mouth sores, and I haven't had this experience to date, so did some online research (so much easier to do than when I'm "in it"). What I'm reading is that chemotherapy agents such as carboplatin and paclitaxel target cancer cells, which are ones that divide rapidly. Hair follicles and cells lining the digestive tract (especially in the mouth) also fit that category, and that mouth sores and metallic/bitter/cardboard tastes are often a result.

I'm including some research articles below that outline mouthwash treatments (in one case for those undergoing radiation in the nose/throat area, that includes lidocaine, dexamethasone and vitamin B-12) that reduce oral pain and inflammation, and also promote regeneration of the cells of the tongue and lining the mouth. This concept should also apply to the metallic taste, which I'm reading is a natural consequence of the killing off and re-growth of those cells. Using a mouthwash instead of taking oral vitamin B supplements is worth considering, as you do not want to support re-growth of the cancer cells, only the ones impacted by the chemo that you need in order to tolerate and enjoy eating.

https://pubmed.ncbi.nlm.nih.gov/34154361/https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10199211/

Here are also some potentially useful resources regarding mouth sores:

https://www.mdanderson.org/patients-family/diagnosis-treatment/emotional-physical-effects/oral-care.html
I like the suggestions of home remedies in the above link.

https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/mouth-sores/art-20045486

For metallic taste (some of these are old, but had something of value, so I included them):

https://www.fredhutch.org/en/news/center-news/2014/05/Combating-chemo-mouth-experts-offer-tips.htmlhttps://www.medicalnewstoday.com/articles/how-to-treat-metallic-taste-in-mouth-from-chemo#managementhttps://www.cancer.org/cancer/managing-cancer/side-effects/eating-problems/taste-smell-changes.html#:~:text=Rinse%20your%20mouth%20with%20a,to%20help%20ease%20bad%20tastes.

I

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Thank you for that info. I haven’t had cancer treatment, but have taste/smell disorder with a metallic/bitter taste since Sept 2023 (post covid syndrome), I’ve been searching for help. ENT and neurologist haven’t been very helpful.

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I’m so sorry about the horrible taste. I hope that goes away on its own very soon, or that you eventually become able to ignore it a bit.

And, action is distraction is safety from overwhelm! My thought is that whatever keeps you moving comfortably has value. If you were recovering from the surgery that was proposed earlier, you might want to sit a minute to allow your parts time to re-knit themselves. Tears might flow at that point, but are not going to continue indefinitely, and might bring some relief if you can allow it to happen.
I couldn’t sleep after my diagnosis and before my surgery. I couldn’t focus much on anything other than what was rushing at me, either. Work helped a lot then. Having a reassuring poem or prayer or mantra to repeat gave my brain a bone to gnaw on until exhaustion finally won in the wee hours.

Keeping you in my most active thoughts, @mommacandy

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@gynosaur42

@mommacandy
Gynosaur weighing in to express my own annoyance with partners whose "sympathetic pregnancy, cancer, chemo, etc, symptoms" seem to overshadow the actual patient's symptoms and suffering. What a way to express support! We can (only gently) joke about this at our house when I am healthy (and therefore my partner is at peak health and sense of humor!). I once offered to ask my surgeon if he had time available in his schedule to squeeze my husband in for a radical hysterectomy before he got to me, since my husband's symptoms seemed worse than mine. (He complained of exhaustion and low back pain when I had been in labor for 20 hours, too...as if I was lounging on the couch, watching re-runs and eating bonbons!). I don't recommend irony as a rule, but found, in that case, that a "pointed remark" was all that I could manage (and did get a message across, although some repair was called for afterward).

I have read that couples develop unconscious, unspoken contracts, such as, "I help you feel good about yourself by letting you take care of me," or, "having physical pain or injury is the only acceptable reason for asking for care," or, "you reach outward for support and I get all of mine from you, so you can't be sick," or, "we don't talk about ______." It is times like these when those contracts become more apparent and MIGHT be ripe for conscious, explicit re-negotiation. It seems to me that my cancer has "provided opportunities" for me to learn how to ask (in direct ways and until I am heard) and to compassionately and generously (to myself) allow myself to receive from others. My husband (and our relationship) has grown a lot in the context of my cancer diagnosis, surgery and ongoing recovery/surveillance.

I truly hope your husband gets himself together (maybe he needs to seek emotional support for himself from others for a minute or two...) and becomes able to support you in all the ways you deserve! This is a pattern that does not help you and you deserve warm, kind, responsive help from as many around you as possible, starting with him!

Wishing you through this...

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Thank you for posting this.

I have recently felt I'm in a 'competition' for who is suffering (or has suffered, even if it was 20+ years ago) from a major condition / pain / etc.

I "called" my partner/fiance on this just the other day - easier to do while out to eat (i.e., in public setting), and said - 'this is not a competition'.

[I recently had a VIN II/III (vulvar intraepithelial neoplasia) diagnosis and then laser ablation of my entire vulval area, and more to come. In other discussion areas here I've gone into some of the excruciating pain I've been enduring since then - to put it explicitly: urine is not kind to raw flesh - and I never know if the next bathroom visit might be excruciating or, if I might just < 10% of the time - get a "pass" on the pain.]

In one of the few times I've mentioned it to an acquaintance since this surgery, I referred to it as "female-related surgery". My partner pipes in that he has "male-related concerns" too. When I shortly thereafter asked him what these "male-related issues" are/were, he referred to his last year's pancreatitis attack. "WHAT???...that is NOT a male-related issue..." (And I WAS there with him at the hospital, advocating for him when he (usually) doesn't speak up for himself, etc etc., which is what I would hope and want any loving partner/friend/family member to do for me in any such situation. And, I am continuously watching out for his diet, his medical stats, doctor visits, questioning bills, etc.)

Even writing this down here it seems ludicrous - with all due respect to my sweetheart - but we've got to get this straight: I am currently facing (literally) "crying-out" pain at each bathroom visit, I haven't found anything that will calm the pain except good old Vaseline, AND, to the point...this is NOT about him!

He nodded he understood, but I know that tension is not over.

I'll leave it at that for now, but I think you understand what the struggle is...

I'm writing this with a loving smile, as I appreciate what we have, I just find I am the more 'articulate' one when it comes to addressing things - whether I'm trying to recover from surgery or not! - and so it adds up even more when you're the one in pain or even "just" discomfort, not knowing how you'll make it through the next bathroom "journey"!

Our medical Journey" has ramped up in the past 6 months, and there's probably more to come, so we need to be present for each other at the time of their need, and watch out for the other, equally, not in any way that's measurable, but in a way that recognizes their current experience, concerns, even fears, and hopefully we'll get better at this as we go along.

Hugs to all who've 'been there'.... 😉

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@mommacandy

ok i know this is gonna sound weird to yall but i don't feel normal sitting and doing nothing...i've been way too active for too many people for too many years to be content "resting" and doing nothing and tbh i'm starting to wonder if i wouldn't be better off pushing myself to drop dead exhaustion. Its almost like if i'm busy doing things i don't have time to think about what is happening esp this metallic taste that is literally driving me bonkers...i've never been a "hard candy" person and honestly food is anything but appealing atm i'll eat 3 or 4 or 5 bites of anything and i'm done...anything more and i feel like i want to throw it back up.....and i'm wondering if that is because all of a sudden my caloric burning has dropped to about nothing...i've been forcing myself to eat a couple bites of something every hour or two even if its only a few berries..no i don't have massive amts of energy and that trip i took yesterday wore me out and i STILL struggled going to sleep which is not normal either...even my vet friends swear i could drop to sleep with the best of the them at the drop of a hat and have been asked if i was sure i was never in the infantry... but i noticed yesterday while i was busy doing things outdoors and so forth it distracted me and computer and phone games just don't work the same way for distractions, nor does crocheting or latchhooking or whatever... surely i'm not the only person out there that feels this way....am i?

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I'm so sorry you are going through so much. Understatement.
Re metallic taste. Some of it will still be there. But I found a way to help with meals using plastic utensils. Cuts way down on added metallic taste from fork or spoon. Or now, we can get wooden or hemp cutlery. I also ate what I could - eg packaged mac and cheese (in Canada M&M) - shepherd's pie. Just have to be nuked. Not as nourishing maybe as homemade - but very good, goes down easily, tasty, and given the amount of drinking water and juice needed to flush out chemo, my body needed salt ... so a little extra salt in prepared food isn't a bed thing if it gets us eating.

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