Putting the hysteria in hysterectomy
January 9, 2017 6:06 PM   Subscribe

My girlfriend will be undergoing a radical hysterectomy in a couple of weeks, for something that may or may not be cancer. I am coping less than well, but don't want to put all of my anxieties on her, as she has quite enough to be getting on with. I need help managing my anxiety and figuring out how I can best support her before, during, and after the surgery.

We are both women. She's 39. We live 900 miles away from one another, but had nebulous plans for me to move there this summer.

I will be there for her surgery and the nearly 2 weeks after (taking unpaid time from work -- it's the most I could manage without quitting my job immediately.)

I have two distinct questions. One is, what can I do to manage my anxiety between now and 2 weeks from now when they biopsy the mass in her abdomen to determine whether or not it's cancer? I would prefer advice about self-management stuff -- we have a healthy, loving relationship and talk about important issues (we've walked through what we'll do in some of the worst-case scenarios, and talked about our big fears). What I'm looking for is how to quell the everyday, constant, low-lying dread that everything is terrible and she's going to die, which is not something I want to put on her.

Secondly, and more importantly, what are concrete things I can do to best support and care for my partner before, immediately after, and long after the surgery? Assume I'm already on top of much of the usual stuff, like cooking things to freeze for later, making sure the house is set up for her to recover comfortably, cleaning, taking care of pets, etc. People who have had non-laparoscopic abdominal hysterectomies before: what was your recovery like? What did you find the most helpful? What do you wish you could have done differently if you could do it over again?
posted by coppermoss to Health & Fitness (12 answers total) 10 users marked this as a favorite
Do you have a good GP who will give you a lose dose of Ativan, if you ask, without referring you to a psychiatrist? I do and that is what I would do for managing anxiety, short term. Referral to a psychiatrist not a Big Deal but it takes longer and it's more steps when you don't really want to be using up your resources on extra tasks.

Otherwise, find an easy, preferably self-contained physical, ritual that lets you blow the anxiety off. Some physical gesture that you assign the power of carrying the anxiety away and if it lets you either physically burn energy (like climbing the stairs between floors in your office building) or lets you focus your mind on something else (like counting backwards from 200 by 3s), all the better.

I've known people who use mantras or worry stones or make cups of tea they never drink. I had one friend who would fill the sink basin with water, while she held her hands under it, then dunk her face in it, using the moments to clear her mind of anything but the rushing water.

I have no advice for the surgery aftercare, but do take of yourself too. Kind thoughts.
posted by crush-onastick at 6:15 PM on January 9, 2017 [2 favorites]

Comfort in, dump out. And in this case, "dump out" doesn't just mean "don't burden your partner with this stuff" but "rally yourself a pit crew of your own while you also rally a support team for her."

Seriously, this is the time you call up your closest friend or your mom or find a stranger on the internet and queue them up. "Friend/stranger, I need someone I can completely freak out to who will keep my secrets and make me real or virtual tea and give me headpats and just let me spew, can you do that?" This is also the time you ACCEPT the "how can we help?" offers and start assigning meals and errands, or appoint a Team Captain to field those offers and dole out responsibilities.

Also, if you can find a walking buddy (either the same person you spew to or separate), it will help.

While there are a couple of don't-think-about-it-right-now-except-at-2am things that are worse, in general the waiting is the worst part. In a few weeks you will know, for good or bad, but the not-knowing is torture and it is fine to call it torture out loud and call on your support team to help because you are undergoing torture. You don't have to be so tough, you only have to be tough enough to crawl through this, no more.
posted by Lyn Never at 6:38 PM on January 9, 2017 [11 favorites]

So sorry...! It can help to remind yourself that, whether or not it is cancer, it is no more or less cancer before and after the biopsy. Sort of a weird concept, but it's helped me on a number of occasions when I need to take the focus/anxiety over my or a loved one's upcoming medical test -- the test itself doesn't change anything in the body.

You could offer to triage inquiries and offers of help for her, especially if it turns out that she will need help for a long time after you're gone (she will need some even in a best-case scenario). If she's keeping everything private, that's one thing; if she's open with it or will be if it's a positive diagnosis, there will be a slew of inquiries and abstract offers of "help." Start, with her permission, pinning people down -- a private FB group can be good for this -- state what's needed: rides to and from appointments, $$$, help telephoning support agencies to see what they can do, a thorough vacuuming... People do want to help, but they often don't know what's needed. Tell them.

...and, line up people to take you out to the pub for a solid night on the piss, or whatever your version of that happens to be. Shore up YOUR support systems; caregiver fatigue is a thing and a bad thing -- you don't want to end up in a position where you're too burnt out to Skype. Making sure you will be taken care of IS making sure she will be taken care of; don't take that lightly. You need people who are not your partner than you can complain to, as you will probably end up hiding a great deal -- for a while I would drive an old friend to and from chemo appointments, and be very cheerful, and then silently (kid in back seat) bawl my eyes out on my way home. It was a relief to have friends who could hear and understand "Fuck this shit."

No matter what the diagnosis is -- make sure the freezer fare is stuff you like, as you may be eating all of it. One friend with cancer could barely eat anything that wasn't garbage, and his food of choice was McDonald's. Those nice little cookbooks "for cancer patients" that have healthy bland recipes are, I've found, rubbish -- several friends of friends have been through cancer in recent years and they have all eaten crap. It is what they crave, and what they can most frequently not barf up. I had the same after surgery, too.

I have had pelvic surgery twice; both times, especially the 2nd when I was somewhat older (close to her age), I slept -- radical napping. Barely ever awake for long, not fully awake when I was awake. This was really persistent. There was brain fog and pain, but, so much sleep. Also a lot of weakness. If it is difficult to get from the bed (or sofa; it can be nice to be set up in the living room depending what conveniences are where and how good a sickbed your sofa makes) to pee, put a bowl and wipes out. Stock side tables with drinks and the preferred snack foods. Be willing to get on the surgeon if pain control is inadequate (or nausea control, or anything).

The above suggestion for Ativan is not out of line. You might also look in to beta blockers, which I sometimes find more useful for a specific severe stressor.
posted by kmennie at 7:04 PM on January 9, 2017 [1 favorite]

I had a hysterectomy a few years back, due to uterine prolapse. There were a few things I didn't think of that I'll suggest. Something to remember about the no-lifting rule - it includes stuff like a laundry basket, groceries, carrying out recycling/trash. Make arrangements for those things. Have a grabber handy for the early days when reaching & stretching might hurt. The most surprising thing to me was the emotional aftermath. I had short-term memory problems from the anesthesia, was weepy and anxious from the hormones, and was coming to grips with being barren. Your girlfriend will have the added worry of waiting for biopsy results. Give her a safe space to express her fears and worries, and keep loving her like you already are. Best of luck to you both.
posted by jhope71 at 7:35 PM on January 9, 2017

Just a general note about recovery: brains are weird and people hate change and crave normalcy, which will include deep inexplicable urges - even if you/she knows better - to behave as if she hasn't just had abdominal surgery. To lift and bend and not take prescribed pain management as if you'll get more Heaven Points for suffering and you can speed up recovery by acting recovered.

I have only known one person in my entire life who has recovered with zero issue from hysterectomy/big abdominal surgery. She sat down with someone from her doctor's office and a calendar before surgery, and wrote down every benchmark: how many times a day to take a natural laxative, when she could shower, how many feet/miles a day to walk, when to start stepping down opioids, when she could lift 5/10/15 pounds. She made lots of notes about what sorts of things she should call them about at each stage of recovery. Then she did only those things, and whenever she had the urge to race ahead she referred to the calendar and noted that the *earliest* she could do X or Y was next Tuesday or tomorrow or a month from now. She kind of made it easy on herself because, welp, calendar says no, whattaya gonna do? (I am certain this was helped in part by not being in the US, where we try to recover faster because it's cheaper or we need to get back to work.) And on the other side, she was absolutely fanatical about trying the dictated amount of exercise every day, whether that was four slow laps around the living room or a mile and a quarter in the neighborhood, and letting the doctor know if she was having any trouble doing it.

Emotionally, it might be easier for you to be the calendar-bearer and the professional-interviewer on that than for her to grapple with a conversation about things like only being awake 6 hours a day or having an exercise goal of standing for 10 minutes. It's very fragile to contemplate and easy to imagine you hear things that aren't actually being said.
posted by Lyn Never at 8:13 PM on January 9, 2017 [4 favorites]

It's less than a week since I had my laprascopic hysterectomy so I'm not entirely the person you want to hear from, but its recent. Here's what's going on:
I'm frustrated by my current physical limitations. I like to walk, and I'm allowed to, but after a very short distance, my guts start dragging, aching and then become painful. That said, I am convinced that my early, careful, mobility has increased my recovery rate.

I was annoyed initially at my gyno/surgeon's insistence on prophylactic pain relief. I'm tough! I can handle it! But by the time the pain comes and is strong enough for me to want to treat it, the delay in starting to work takes an eternity - so keep to the drs pain relief schedule.

I too have been unexpectedly emotional, crying everyday, even though I've wanted the surgery for 20 years. I'm not missing my uterus, cervix or fertility, and I know I have a fulfilling life ahead of me, but fuck, crap, shit, I could use a lot of cuddles right now, and someone to tell me I'm wondeful and loveable and brave.

I am scared that the sudden menopause will reduce / destroy my libido, even though I know that could have a silver lining (no need to go on the hunt, more time for other hobbies) and I want to punch my darling friends who say I won't lose it. What do they know? I wish they'd say things like,"that must be scary, to fear losing that." And to acknowledge that it's a reasonable fear that impacts on my idea of my self.

My first poo, 4 days after the op, was so huge I was scared it wouldn't flush (so maybe have something in place just in case - I don't know what though). I haven't been constipated, but I have stuck to drinking the preparation Movicol every day because to have constipation as well, and straining... as it is, bowel movements feel like labour contractions as stuff moves past internal wounds. I took Dr's advice and placed foot rest from my office in the toilet to raise knees above hips and it helps.

It sometimes feels like I have a tampon in at the wrong angle, in an overly dry vagina- i assume this is the vaginal cuff wound.

Getting out of bed has been a bitch as it was my one situp of the day. I have to roll on my side and do a sort of side push up. It would have been nice to have someone to help me get up, to help me put pants on, to wash my legs and feet. If your bathroom products are on the floor, do get a shower rack or something.

I don't know if your lady will experience this with her procedure, but the gas that had to escape my body (farting, burping and just through the skin) was so incredibly painful I thought I was having a heart attack. I don't know if she would prefer to know in advance so the fear is minimised.

I had a catheter for the first 24 hours. It was a little uncomfortable but after the stress of the operation on my bladder I kept asking to be allowed to go to the toilet (first 12 hours or so). Removing it was again uncomfortable, but the nurses were so lovely and competent that the embarassment was minimal.

Askme has a lot of hysterectomy stories that reassured me.
posted by b33j at 8:21 PM on January 9, 2017 [6 favorites]

Yeah, as between ativan and beta blockers (propranalol), I prefer the latter. Musicians use them to help keep their hands steady when on stage. Ativan doesn't help me much and I am calm and gracious on propranalol.
posted by janey47 at 8:31 PM on January 9, 2017

no matter how much fiber/laxative supplements she thinks is enough to take after the surgery, she will be wrong and should double the amount. i didn't poop for over a week and it was fucking agony.

other than that, the absolute most important thing for me after surgery was always always having a small cushion or folded blankie nearby to press tightly against my stomach when coughing, sneezing, laughing, hiccuping, any kind of body motion that is centered in your core, because the internal pain of that just happening willy nilly to your insides is ungodly.
posted by poffin boffin at 10:48 PM on January 9, 2017 [1 favorite]

I had a hysterectomy 15 years ago, my advice from way back then is as b33j says: have her walk as much as possible as soon as allowed after surgery. I'm not a very fit person and this was my first (and only, so far) major surgery - but somewhere, someone gave me the advice to walk, so that was my focus, and it helped my recovery enormously.

My other advice is to look into renting a recliner for her recovery. I slept in that in the living room for the first weeks, rather than going up the stairs to the bedroom and having to deal with transitioning from lying down to sitting up. The cost from a Rent-a-Center was less than $100 for a month.

Best of luck to both of you.
posted by sarajane at 4:38 AM on January 10, 2017

My mother had a radical hysterectomy after being diagnosed with Stage 4 ovarian cancer and being given 6 months to live. She proceeded to live for 11 more years, and was even in an NIH study that could have been titled "Why aren't you dead?" I say that because your girlfriend has a much, much better prognosis (they aren't even sure it is cancer), and it would have been a pretty miserable 11 years if we had spent all that time assuming she was on the verge of dying. I know you can't keep yourself from worrying about it as a worst case scenario, but please keep in mind that it actually IS a worst case scenario, not a likely outcome.

People here have mentioned the hormones, but what often happens (and what happened for my mother) is an accelerated, early menopause. Since you are already feeling fragile, please prepare yourself for the possibility that your girlfriend is going to be REALLY emotional, and feel very out of control about it, and that it likely has nothing to do with you. Our culture doesn't handle women going through menopause well, even when those women are at the "correct" age for it, and it is even less helpful for people going through it much earlier in life. You might want to read up on accelerated menopause to have an idea of the symptoms, so that you are prepared for some of the challenges she is going to be facing.
posted by a fiendish thingy at 6:29 AM on January 10, 2017 [1 favorite]

Get a small notebook and WRITE DOWN EVERYTHING. At appointments and procedures record every word and every action; at home, keep notes of food, sleep, meds, surgical drains, whatever.

This will make you a Useful Person to the doctors/nurses and to your GF, which feels good. This will also give you focus outside of your head, which helps. And this will give you some power or control over the whole situation, which is super important to most folks.

Lay in a supply of distractions (books, DVDs, magazines, whatever), and have a comfy place to sit. And then encourage her to keep moving as soon as she can -- though at the hospital they will probably have her walk like the same or next day!

Women I know who have had major abdominal surgery bounced back more quickly and more fully when they went into the surgery in good physical shape, and when they relentlessly did the post-op exercises that the doctor suggested.

And since you will be pulling double- or triple-duty of housekeeping and post-op care and bills and emotional support and just answering the damn mail for a while, "dump out" but also arrange for a break for yourself once things stabilize. There will be so many stressors and so much change afterwards that you'll need a place to just...unspool for a day or three.

Good luck!
posted by wenestvedt at 9:40 AM on January 10, 2017

I had an hysterectomy with bilateral salpingo-oophorectomy two months ago today due to a diagnosis of endometrial cancer.

For the anxiety: there’s a couple of things I found comforting

a) Cancer is indeed a scary word. However, it’s not like every cell in her body has gone rogue. She’s got a few cells (few relative to the mass of her body) which are doing their own thing. The surgeon is going to do his or her best to get them all.

b) There’s so very many steps and stops and gradients of treatment between a cancer diagnosis and death. It’s a really really long stretch with so many layers of possible intervention (if needed) for uterine cancer especially, because the uterus is a powerful muscle clad organ that is pretty good at not letting stuff out.

c) No amount of fretting on your part, her part or anyone else’s part will change the outcome. Worrying is pointless, enjoy the moment right now.

So practical stuff. Everyone’s recovery story is different, however, if it’s any comfort: mine has been great. I left the hospital in two days, stopped taking pain meds at 1 week, went back to work after 4 weeks and at 7 weeks felt back to full charge, energy-wise. At this point, I forget I even had surgery until something external reminds me. There’s 3 things I attribute this to:

1) I was given the choice of going under general anesthesia for the surgery or remaining conscious and getting an epidural plus a low dose of propofol. General would have required intubation and often leaves one groggy for days. I choose the epidural + propofol: it was the coolest thing ever. I don’t remember anything between the times I was wheeled in and out of the operating theater but apparently I spent a good chunk of the surgery cracking dirty jokes. Recovery was very quick: once I woke up in post op, I didn’t feel fuzzy headed or nauseous.

2) My knees are in good shape. Those first few weeks where you aren’t to bend over at the waist really made me appreciate that my knees could still manage deep bends.

3) I kept looking at my cats and thinking “When they got spayed, they were running around being monsters again within the week. Imma going to live a cat’s life.” Cat life: sleep 75% of time. Sleep any time and anywhere you feel like it, day or night, where ever you happen to be. Monopolize the coziest spots in the house without any shame at all. Make someone else serve you food and clean your shit up.

Other things that helped:
At the hospital: bring foam ear plugs that are connected by a string, she can loop them around her neck. Hospitals are noisy places 24/7, even if you have a private room. Also bring something she can block light with, like sleeping shades. I draped a small fleece blanket over my head and face, which made the hourly nurse check ins much less annoying at 3 am.

Lay in a stock of dried prunes, eat 4-5/day starting the day after surgery. And drink lots of water. The one non-prune assisted BM I did in the first two weeks was more painful than giving birth.

Switch the sheets on her bed from winter flannels to summer weight fabric. The weight and texture of blanket/sheets/PJs on that area mentioned above was so uncomfortable. For me that whole area felt like it had caught a bad sunburn: tender, sensitive, achy but not actively painful if allowed to just sit undisturbed.

Related: she might experience hot flashes or as I did: just an overall surge in non-stop entire body heat. For me, this made the concept of eating anything warm completely repulsive, I ate almost nothing but watermelon the first week because it was so nice and cold.

Granny underwear. Thin, cotton, the kind with the waistband that goes above the bellybutton. She will want these as the area between her bellybutton and her bikini line will be tender and rebel against any sort of pressure for several weeks.

Abdominal support: for the first week or so, I wore one of these. Her belly will get puffy as the day wears on, and it is just tiring feeling like you are holding up your guts. A haramaki also was a nice soft support for when the heavy duty supporter was too much.

Don't worry. Be good to yourself, too.
posted by jamaro at 12:29 AM on January 12, 2017 [1 favorite]

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