Jackie update: life is busy!

This is for all the friends and family wondering why there’ve been no email updates, why we’ve been begging off invitations to come over, why we’ve been refusing to have company here, and, well, anyone else wondering about the disruption and irregular contact.

There’s nothing to worry about, nothing is wrong… but we are several steps beyond busy. Even before her surgery, Jackie was on disability for unrelated issues – back problems with mobility limitations and very high chronic pain, mainly, which are not particularly helping. Her recovery is going really well, especially with the dratted catheter out. However, every individual is different, and there’s the odd thing, like keeping the whole site dry, that turns out to take a bit of extra effort. We also have a sick cat here that we’re both extremely worried about: Cory-Bear is in some discomfort still despite meds, diagnosis will involve increased pain and the treatment for the most likely cause will involve even more pain, which is forcing us into a corner that no one who loves their furkids ever wants to be in. And we have two healthy cats who need love and playtime if they’re going to stay healthy. Add to that a landlord who is doing the fourth “sorry for the inconvenience” major weeks-long building work in five years, yet again involving dust and noise that stress the cats and exacerbate Cory’s allergies, starting today, and their annual on-site “maintenance” inspection on the 18th in which they invariably find something to complain about, which means I need to make sure things look decent for that. (Although it’s going to be amusing if they show up outside the windows in the daily schedule…!)

All that said… she’s healing very well. The swelling is less extreme, there’s much less blood, especially while dilating, and the pain has decreased quite a lot. She’s still re-learning how to pee, though, and there’s a (not-so-)occasional accident. 🙂

Here’s what my day looks like right now:

8:00, alarm goes off. Assuming I can roll out of bed without hitting the snooze button a couple of times, stumble out of bed and head for the kitchen, waking Jackie on the way. Three cats need their breakfast; one of them needs meds, which is a bit of a mix that takes me a minute to prepare. Then breakfast for Jackie, who has gone back to being too sore to get out of bed when she first wakes up. Then breakfast for me. There’s a short window here for me to check on Cheezland (the fairly active site I’m admin of) to make sure all’s well, take a look at a couple of web comics I follow, find some clothes which is mostly old scrub pants and t-shirts, and try to achieve some level of consciousness.

9:30, first dilation. I’ll spare you all the details, but between preparing for it, doing it, cleaning up materials and Jackie’s person after it, a sitz bath, and air-drying time, this takes until somewhere between 10:45 and 11:00. Through most of this, I read to her – I have tons of my own writing that doesn’t fit into a nice neat novel format but she enjoys hearing it, which keeps her relaxed. Also, the cats especially like to be around when we’re together and I’m reading, maybe it’s my voice, maybe something about the energy, so it makes them happy too, and helps Cory relax. So we end up with all five of us in the same room, the kids asleep (or Trick closely supervising what Jackie’s doing, which is hilarious, and Jackie says disturbing).

11:00. Throw in a load of laundry. Do dishes from breakfast. If there’s any shopping to do, and there usually is, for groceries or medical supplies or cat food or something, go do it now.

12:00, lunch. Although way too often, it’s past noon when I start this, depending on how long I was out. Regardless, we need to be done eating on time, because being late with one dilation shoves the whole schedule off, and then we end up finishing so late we’re worn out the next day.

1:00, second dilation. A lot like the first one, although generally with a shower instead of a sitz bath. This, when there’s a shower involved and even more so if she’s sore and needs a hand, takes at least until 2:30.

2:30 (or 3:00, or something like that). Anything outside the apartment I didn’t get done earlier, washing lunch dishes and trying to do a few extra to catch up on the backlog, if my time and energy allow then start another load of laundry to work at the backlog, figure out what to do for supper…

4:00, third dilation. A lot like the others, but she doesn’t need a bath or shower this time. Help her clean up, and done by about 5:00. Somewhere in here, I need to run off briefly and get Cory’s meds and give them to him along with more wet food.

5:00, start supper. I am not a great cook, only a so-so one. Most of our diet has consisted of anything meeting three criteria: 1) is it absolutely free of eggs (Jackie’s allergy) and any form of dairy (my allergy); 2) is it something I can realistically prepare, given my usual low energy levels thanks to chronic depression/anxiety, rather than something I’ll intend to make but will sit on the shelf forever; 3) is it reasonably inexpensive. Trying to readjust our diet to make sure Jackie gets the healthiest (and most high-fibre) diet I possibly can is turning out to be both tricky and expensive. Luckily, Jackie is forgiving. Along with making supper, finish up anything from the 2:30 spot, and try to find time to do a bit of work on Cheezland. My friends there are understanding but I don’t want them to have any more disruption than absolutely unavoidable. Whenever I get supper done, we eat. I’m aiming for about 6:30, but usually miss.

7:30, fourth dilation. See first dilation, this is its twin. Done around 8:45 or 9:00. Cats get treats (and Cory gets meds) around now, then we tend to just sort of linger – play with Freya, I finish up whatever bit of story we’re on, cats get some cuddling, and after a bit, Jackie takes her meds. Before we can sleep, I’ve got litter boxes and kitty fountains and kibble to check, making sure Jackie’s bed isn’t a mess (and I don’t mean disordered, I mean yucky), doing supper dishes, generally checking that all’s well, and getting any Cheezland posts done that I didn’t manage to do earlier. Oh, and Cory has one more pill to take just before bed.

midnight-ish, collapse into bed, try to read for a few minutes to unwind, and usually fall asleep before I get a page into it.

Overnight, listen for Jackie yelling for help (has happened several nights, various incidents) or getting up to pee and forgetting to put her V-PAP mask back on, and for Cory, which combined means multiple interruptions through the night.

8:00, alarm goes off again…

Jackie dozes off frequently during windows between dilations, which is a normal response for her to pain. There’s less now than there was, but that’s actually allowing her to feel the pain in her back more again. (It was bad enough she started throwing up on Sunday, in fact. That’s not surgery pain, that’s back pain shooting all along her spine. It happens. And despite that, I had to push her to do at least three dilations during the day, because stopping is a very bad thing.) I’m bullying her into getting up and walking around the building at least once a day, and at least she’s now at a point where she can go to the kitchen herself to get a drink or a between-meal snack, but she’s physically and emotionally exhausted. Despite that, she’s trying to help – folding laundry for me, and she’s going to be having a word with our cell phone company in the next day or two about why our bills don’t match our plan, things that don’t involve moving too much.

And this is going to continue for the next couple of weeks, after which it’ll drop down to THREE dilations a day… each of which is longer, so I think the net gain in time through the day is probably going to be minimal. That continues for a further month. Sometime in mid-December, it’ll be down to twice a day, without each becoming longer, and with any luck, we’ll be able to have a life again. But between now and then, this is what days look like, and if anyone can see anywhere in there that allows for a social life for either of us, or even time for me to get any writing done, which is my favourite pastime, my way of dealing with pressure, and something I’m trying to turn into something more by indie publishing, please let me know…

Oh, and any relationship that can survive this can probably survive just about bloody ANYTHING.

So, if we’re not answering your email, or we’re turning down invitations, or we miss events or meetings… don’t take it personally. Life is currently less gooey and messy than it was a week ago, but it is still insanely full. We normally try to keep our lives relatively low-key, since both of us having chronic health issues means that, well, crap happens, usually with little or no warning. When something comes up that we do choose to do, it tends to be something we very much look forward to, and having to cancel is always disappointing. We’ve pretty much missed Hallowe’en, a favourite holiday for both of us, and Jackie is feeling frustrated about being unable to resume working at Shoppers or facilitating chronic pain classes, both of which she really enjoys. We miss our friends and family. But we’re still here. Bear with us, be patient, and we’ll get back to you as soon as life allows.

Jackie updates: rather belatedly

I really am trying to keep up with updates… but honestly, since Jackie got home, caring for her and for the cats has been more or less a 24/7 job, without a whole lot of extra time to spend on the computer doing anything at all!

She got home Wednesday in quite a lot of pain after the long car ride, and absolutely exhausted. Wednesday evening she actually frightened me with an episode of violent shivering despite piles of blankets and some rather delirious talk combined with fast shallow breathing. As it turned out, it was a combination of the pain and just being so utterly drained – her conversation often gets badly disjointed when her pain spikes high.

I’ll spare you all the extreme gory and gooey details. Just take my word for it, right now, life is pretty messy and involves a LOT of laundry (this really doesn’t convey the reality of it). This is hugely complicated by the presence of the catheter. For most people, that’s removed before they leave the recovery centre. When swelling is bad, as in Jackie’s case, they leave it in for a further week to make sure that the urethra doesn’t close. It comes out on Monday, and our wonderful nurse friend has offered to take care of it here rather than a trip all the way to her GP 40 minutes’ drive away. The thing is, while a catheter is not normally supposed to involve any leaking at all, under these circumstances it’s normal for it to do so. Combined with the more regular messiness of wound care and dilating and stuff like blood, we’re going through a whole lot of towels, washcloths, reusable bed-protector pads, and a ton of disposable blue incontinence pads. If anyone really WANTS the details, like, say, for a partner who has this in their future, or just curious, you can let me know, neither of us has any problem discussing it, I’m just assuming that not everyone wants the details.

One rather funny story, though: the catheter extends several inches, and is a plastic tube. Jackie moved, Freya, who is obsessed with moving string, saw it, and focused instantly – crouched, eyes dilating, ready to pounce! She wouldn’t actually have hurt Jackie, she’s the most careful cat I’ve ever seen about never doing any harm, but it was hilarious and certainly gave Jackie a start!

Since she spent Thursday basically recovering from Wednesday, she wasn’t really up and about very much, and kept dozing off. She’s much more alert today, and is currently out wandering around the halls – carefully, with her cane – to get some exercise.

However, all things considered, I’ve been running around like mad: sanitizing the bathtub for sitz baths twice a day, keeping wound-care and dilation gear clean, helping her stay clean in person, cooking and serving meals, doing laundry (at least the laundry room is right next door!), making sure the bed is always clean (including a middle-of-the-night change), shopping for medical supplies and food, keeping her company, being emotional support, helping her sit up or lie down… some of this is exacerbated hugely by her regular severe back problems, although she’s so familiar with pain that I think that probably helps. Combine this with kitty cuddling, playing, litter-cleaning, feeding, and meds, and the day is currently a tad bit full!

To give you some idea, and again, I hope without so much detail it makes anyone uncomfortable, for a month after surgery, she has to dilate her new anatomy 4 times a day, which takes at least half an hour, generally a bit more with getting everything clean before and after; she needs to douche twice a day, have sitz baths twice a day, shower once a day, walk for at least a few minutes multiple times a day, rest a LOT because her body is putting everything it has into healing, and any time she does do anything, like get up and walk, the protective gear to prevent making a mess rivals getting ready to go out in the depths of a Canadian winter.

On the other hand, the purrkids have decided that they’re very glad Jackie is home. Freya is spending a huge amount of time on Jackie’s bed with her, not even always wanting playing or petting, just wanting to be close. When Jackie’s doing dilation and such, and can’t really do much, I read to her, and Cory loves being close to both of us and hearing my voice, which makes him intermittently happy. Trick has been supervising everything very closely and with great fascination.

It won’t be so bad, long-term – each month for the next couple of months, the routine will simplify somewhat, and I’m expecting things to get much easier once that catheter is out! But right now, it may be Monday or Tuesday before I get time for any further updates. I’ve asked Jackie to do a video from her perspective, which will probably be tomorrow, and I’ll send out the link to it once she does.

Meanwhile, thank you so much for all the good wishes and love, from both of us! Jackie’s back, gotta go get back to work!

Jackie update: she’s home!

Jackie’s home! And exhausted. And taking a nap. And has wanted about elebenty-seven hugs. Trick supervised her sitz bath closely. 🙂 I did not know Freya could purr as loudly as she did when she realized she has her Jackie back! Cory’s much less tense-feeling when I scoop him up to snuggle him on my lap. So, while I’m still thumping away at the laundry, and the living room is a disaster… life’s starting to normalize a bit.

Well, normalize plus Jackie’s rather intensive post-surgical care regimen, of course. But still…

I’ll do a more detailed update when I can. The last day or two have been rather taken up with making sure everything would be ready for her to get home, and that sorta trumps sharing news, I’m afraid. But at the moment, all’s well!

Jackie update: lots of progress!

Saturday being a rather insane day here on the home front (it started with construction next door hitting a water main, no water for 8 hours, and went from there…), updates didn’t get done. So I’ll have to catch up. My apologies on that, and fingers crossed I’ve got all this correct.

Friday evening, and sorry if TMI, her first BM since Monday hit – and did so extremely painfully. No similar problems since, though. A bit scary, given the risk of popping stitches if straining…

Friday night was a bad night, she got herself and her dressings all somehow twisted around uncomfortably, and took her vpap mask off in her sleep. She woke up feeling bad from that and pain, and laid back down after breakfast Sat morning.

Saturday morning, the padding came off. Nurse says all looks good, except that bit of swelling still. She got to have her first real proper thorough shower. She also got to have a proper look at herself and, well, confirm for herself what’s there. Or not there. Lots of tears, the happy kind. There’s the occasional moment of, “Was I insane to do this?” There’s a video here she did afterwards: https://youtu.be/mixHQSF5U6w (Princess Julie, referenced a couple of times, is a Canadian trans woman with a regular video blog) – you really need to watch this.

Mostly happy tears, anyway. Learning of a young trans woman who suicided after leaving a letter online was, to say the least, upsetting. She’s currently feeling intensely grateful for her supportive friends and family. This at a time when her own emotions were rather heightened was rather tough.

The cook is being absolutely wonderful. Others had eggs for breakfast, but the cook made sure Jackie had options… set up in the dining room, so she didn’t have to be near the eggs at all. When the cook did buttered chicken Saturday night (Jackie’s lactose intolerant) she came to discuss what to make as a safe option. Believe me, if you have food allergies and spend your life paranoid about anything you didn’t prepare yourself from scratch, wondering whether it’s about to bite you or whether the person preparing it actually knows what things can hurt you badly and was careful enough, this is an incredible thing!

Anyway, it turns out she had a substantial amount of clotted blood – it’s superficial, fortunately, and is coming away thanks to sitz baths and showers. There was some concern about that as another delay on the catheter removal, but it appears to be resolving itself. There’s pretty extensive bruising, but nothing worrying, apparently everyone is different. I’m not going to include the pics she sent me, but all I can say is, wow! Still healing, but that looks less medical and more magical!

So, she’s now having sitz baths a couple of times a day as well, which she says feels good. No epsom salts or anything, just a little bit of ivory soap, keeping everything clean. Air dry for 15 minutes, then polysporin, which she’s doing herself. Pain goes up a bit every time she messes with the area in any way, but settles down again once she has a chance to relax.

She had a tough time falling asleep Saturday night, between pain and emotional stuff and head refusing to slow down, and ended up calling me. I’m not sure how being on the phone with me while I was also playing with the Cory-Bear, who was enthusiastically killing a lot of tissue paper in the hunt for little plastic doodads, ended up helping, but she did finally start feeling sleepy… then got a message from a friend who’s supposed to be arriving in Montreal today for her turn, and who was really apprehensive, so being Jackie, she delayed bed to answer her. A bit of a catheter accident didn’t help matters.

Another bad night sleep-wise, she was terrified because, well, the stent holding everything open came out this morning. She’d ben told it was excruciatingly painful and that some people throw up. She says it was pretty bad, but she didn’t throw up or anything. Now she gets to start dilating every couple of hours, to keep everything open properly. Showers, sitz baths, douches, and trivial stuff like sleeping and eating, means life is going to be a tad full for a while. (It will slow down.)

As of now, she’s just out of the shower, did makeup for the first time in a week, has reassured her friend who just arrived that the only real negative is some pain, and is waiting for lunch.

Her sister planned to come back to stay with her more, but got sick, and isn’t inclined to spread a fever around the recovery centre. So, that got disrupted. Not sure what’s happening as far as her ride home on Wednesday, but we’ll figure something out! (With any luck, for many reasons, we can hope Carrie won’t be sick that long!)

I have a lot of pics to share of her room and a couple of her just now. Instead of individual links, I’m just going to share the folder and hope this works. If you look at the room pics in order, it should give a kind of panorama view – they’re from multiple sets so lighting varies. 🙂 Plus a couple extra pics: the outside of the building, with Jackie’s room marked (the door inside her room looks onto the small closed-off porch visible from outside), “Dilation Central” set up on a table, and two of her just now. https://drive.google.com/open?id=0B659Ha5JCZsyZTVJV2RNbnJfVkk (if it doesn’t work, tell me!)

Oops, this is long. The consequences of a writer doing updates! Will try not to leave it so long again!

~Steph

Jackie update: in the recovery centre

Sorry about the delay – Jackie had a busy and rather social day yesterday and I didn’t get to talk to her much, and I was rather tired myself. She actually vanished on me again while I was working on this update – will send out links to pics of her room once I catch her again. Busy girl!

She’s all moved into the recovery centre. She has her own room there, with a shared bathroom. (For those of you who’ve been there, she’s in 206.) There was a small hiccup of her toothbrush and toothpaste getting left behind in the transfer, which she didn’t know until bedtime, but they found it today. It certainly sounds like they’re feeding her well, and being duly careful about her (severe) egg allergy.

In terms of medical status, she’s still swollen more than they entirely like, which might delay the removal of the catheter. She’s supposed to increase how much she drinks. Also, lots of ice packs! There’s been no bleeding at all for the past two days, however. She’s changing her own dressings and pads at this point. Pain is still not all that bad, sometimes actually LOWER than her everyday average level, and it’s entirely focused between her legs, nothing she’s registering in her back, but it spikes higher after moving much. ” Standing up, sitting down, walking feels good, sitting slouched feels good – posture gone to hell lol” She is eating, but her digestive tract hasn’t kicked back into full gear yet.

She says: Outer packing out tomorrow, Inner packing out Sunday! Sitz baths start tomorrow, Dilating starts sun, Catheter removed Monday or Tuesday depending on body response

She’s been socializing lots with the others in the recovery centre, folks who are going in both directions, including a couple of rather emotionally intense conversations from what I gather, which included someone’s wife and someone’s mom. She’s getting dressed, not just running around in hospital gowns or the nightshirts she brought, which feels good.

Emotionally, she’s feeling really up-beat. She wants the packing out, and wants her lower GI tract to start working again, but overall, she says, “can’t believe it is so quick …. like that RHPS song, make you a man, but flipped, make you a chick”

Jackie updates: breaking news!

Jackie’s being moved this morning from the hospital to the recovery centre next door!

That’s all I’ve got, that was the urgent news when I woke up and she doesn’t have time to give me more yet. 🙂 Presumably this means they’re happy with how she’s doing.

Jackie update: evening edition

Not a huge amount to tell, really – conversation’s been a bit sporadic through the afternoon.

She had supper. Because she’s eating and it’s staying down fine, they took her IV out. (Catheter and stent stay in a while yet, for healing.)

She’s been up and walking twice more, and feeling rather pleased about it (rightfully!).

She’s exhausted and dozing off a lot.

She’s getting to meet some of her neighbours in nearby rooms, some of whom are apparently quite nice. Her roommate friended her on Facebook.

Her sister Carrie had to drive home, but will be coming back.

Her pain is a bit higher than her usual background level, but not excessively so (she says about 5/10, and her lower end is about 3.5 with an average of 4.5) and they’re being quite good about staying on top of it. She’s also recovering very fast in terms of anaesthetic, compared to those around her who had the general rather than the epidural.

Jackie says: Thanks hugely for all beemz … truly appreciate it … plus I having difficult time finding balance between hospital room cottage fever and own desire to lay back and comfortable and let stuff happen lol

Jackie update: later that morning…

Jackie’s currently on a major emotional high: she did three laps around the floor (the nurse asked her to do two). Given that last night she couldn’t even stand up, she’s feeling really good about the whole thing. (And we all know, if they’d asked for three, she’d have done four…)

According to her sister, she dozed off a bit soon after Carrie got there, but that’s pretty typical for Jackie when her pain level is high. Since she’s been up and walking, she’s more alert. Here’s a pic of her Carrie took soon after getting there: https://drive.google.com/file/d/0B659Ha5JCZsyMlZIQ3pXeXpmc1E/view?usp=sharing

She hasn’t thrown up her breakfast, she said to add that.

Roommate’s being a bit thoughtless (phone on speaker to talk, calling the nurse every few minutes, making a lot of extra noise). Jackie’s trying to cut her a lot of slack, but that’s going to get old fast.

Dressings have been changed – she was bleeding fairly heavily, but it’s down to normal levels. Bruising’s already started. She’s had two intense hot flashes today so far – but then, she’s been off her hormones for a while because of this, and she’s been through some rather serious physical trauma. (She might be able to start her hormones again in a couple more days – have to stop beforehand because it increases the risk of blood clots.) Nurse says she’s healing well.

Sitting’s a tad awkward, she’s on a donut/ring cushion, but apparently that’ll be (somewhat) better in a couple of days when they remove the stent keeping things open.

Lunch is vegetable soup and pork with potatoes and veggies… now that she’s stopped looking at her birthday wishes on her tablet and actually eating it!

Lunch pics by Carrie:
https://drive.google.com/file/d/0B659Ha5JCZsyMWJuTG94LWlhUE0/view?usp=sharing

https://drive.google.com/file/d/0B659Ha5JCZsyYjVJVzN4RDluLXc/view?usp=sharing

Jackie update: the morning after surgery

She’s awake, and sounds pretty positive, all things considered! Today’s also her birthday, so how’s that for a birthday present?

The bad news is, the pain’s still pretty bad. As of writing this, it hasn’t been time for pain meds yet. She had a pretty rough night, slept poorly. She says, “Snuggled bow the bear all night, helped through owie tears”

They did give her breakfast, though, toast and juice and fruit, which she’s trying to remember to eat slowly. She’s still hungry, but after all the throwing-up yesterday, light makes sense.

They wanted her to at least stand up from the bed last night, which she did. She says, “Stand, walk 3 steps and turn pale/ green Lol”

The other surgeon, Dr Belanger, came in and said everything went perfectly.

Emotionally is, she says, hard to really pin down. The pain’s high enough to be triggering “WTF did I do?!?!” sorts of thoughts, but that isn’t the same thing as being sorry.

She has to get up very soon so they can change her bed, and she’s supposed to walk around. So keep your fingers crossed for her!

More as I hear it!