Recovery: The Condition(ing) of Being a Woman

I’m making slow but real progress, but everybody and their dog keeps telling me to take it slow and I’m really trying to. But I also know that I’m far from “functioning normally”, not to mention that my current level of mobility is also due to generous amounts of anti-inflammatory drugs and painkiller. Anyway, one good aspect of German health insurance is that I’m entitled to a household aid  for as long as I’m recovering. And my most wonderful sister organised everything with her care service and this morning the wonderful S. showed up.

Everything about my working class woman upbringing was uncomfortable. First of all letting a stranger in when my house is a complete mess. I know, I know, the woman came because there’s a mess and I can’t clean, but try to tell that to your subconscious. The other one is to have somebody clean your shit while you’re mostly watching. (I did help as much as I could). I know that many working class men have absolutely no problem with watching women clean while they’re lying on the couch, but for a woman? I’ve been both raised with some traditional crap about cleaning and quite some deep seated hatred against people who watch women clean, since I’m just two generations removed from women who had to go out and work as maids, being abused by master and mistress alike.

Still, I’ll need a household help after recovery as well because I think my body just told me that it is done with playing nice and putting up with my psychological issues of having to do all my cleaning myself.

Hospi-tales: Stink

You’ve all been waiting for this topic, right?

For somebody working with teenagers, I still got a very sensitive nose, especially when the body concerned is mine and it’s also “amazing” what your mind can fixate on. Here’s the truth: being sick stinks. First of all, while my brain knew what happened, my body was still trying to run away from a sabertooth tiger that had just pierced my leg or something. In other words, it was ramming up the response, trying to mobilise as much energy as possible, resulting in me sweating like an ox. The second, and more lasting thing is medical stink. All the medication needs to get out of your system again and part of it just goes out via your skin. And it’ll keep doing that for a while, so I#m off to take a shower first and use some very sweet smelling body butter afterwards.

You’ll excuse me.

Hospi-tales: Pain

Or: getting older just means more opportunities to expand your horizon on “the worst thing that ever happened to me.

As mentioned before, I’m not very loud about pain. As a kid I hurt myself regularly in the way kids do, and the more serious it was, the more quiet I got. I once seriously cut my finger making potato stamps and my mum only noticed when my sis asked why I got red paint and she didn’t. During my first Judo tournament I promptly broke my clavicle in my first fight. I told the people from the sports club that it hurt. Judging from my lack of crying, they told me it would be better in a few minutes and I went to fight another fight. Afterwards I really insisted that this hurt and was taken to the hospital. I said I was in pain, I expected people to believe me. For some reason I still do, despite all evidence.

Anyway, back when Caine posted about her back problems and the work with the pain clinic, I believed her, I understood, I felt empathy, but I didn’t really understand. Of course I’d been in pain before. You can’t break a couple of bones and have children without knowing pain, but I didn’t know Pain. Well, another acquaintance I didn’t particularly enjoy. The hospital was (mostly*) good with painkillers, it was a shame that I was in such a peak that even the morphine didn’t do much anymore. The amount of pain I was in would have been an indicator to transfer me to another hospital for surgery if the treatment of cortisol injections directly into the spine didn’t work. Which leads me from Pain to PAIN. The worst thing in the first days was sitting, as it put weight on my poor inflamed nerve, but in order for them to inject me into the spine I needed to sit and round my back. I simply jumped from the table twice. When we finally got down to it I was crying, whimpering and at the end more or less passing out. If PAIN has a bigger sibling, I never want to meet them.

 

*Sometimes there are nurses who take it upon themselves to decide that you are really not in that much pain and shouldn’t have painkiller. No, not even fucking metamizol, which is usually effective and has lower (but not no risks) than the alternatives.

Hospi-tales: Of being stupid and emergency care

Well, as you all know I used the last week to to enjoy the benefits of socialised healthcare. This first post will mostly explain about some good things about our system and some bad things about being tough.

I’ve been having some back troubles since summer. They usually flared up, subsided, no problem, right? So when my left thigh started hurting whenever I got out of the car or sat for too long, I didn’t heed it but thought “it will pass”. Please, don’t be me. I don’t know if the worst could have been avoided if I’d gone to the doc then, but I’d be kicking my own ass if I could reach it anyway.

Well, on Friday last week the pain increased to the level that I called my GP. I got an appointment for Friday this week… Saturday morning I decided it could not wait and made Mr drive me to the on duty GP. This is one level of German healthcare meant to prevent people with colds clogging the ER. Problem is that sometimes the person is not a GP but a specialised doctor,though I think they changed the rules and exempted specialists who are not able to diagnose an actual emergency like psychiatrists or eye doctors. The post is located in the hospital so they can react quickly in case of an emergency. The nice doc examined me, determined I had no neurological failure and sent me home with more pain medication. After lunch I had to admit that it wasn’t working and had Mr drive me to the ER.

Well, the system to keep the ER unclogged only works to a certain degree. I saw them send people next door, telling them that yes, their cold was bad but a case for the GP, but there were others who insisted to be an emergency. There was a guy who insisted he’d been waiting for hours (it was 45 minutes, as the friendly receptionist told him) and who demanded to be seen immediately. When he got told he had to wait he told them “well, just tear it up, I’m going home!” And of course actual emergencies and I do understand that an old lady with chest pain is probably more serious than me. But I was never good at making my pain heard, so I got pushed to the back of the line until I told them after two hours that I was about to puke on the floor from pain. That got their attention. I got sent for x-rays (nothing to see, thankfully) and hooked up to IV painkiller. I was offered to stay and first declined (I am not the smartest cookie), but when the painkiller didn’t show any effect I decided to stay.

The morale, dear children: go see your doctor if you can. Don’t wait until you become a Saturday afternoon emergency.

How I did not lose a finger (twice)

You probably noticed that I did not write much anything this last week, and you might not notice the why in TNET. Here it is.

Content warning – description of injuries and first help.

Since I was 10 years old, I was working with sharp instruments in the house and around the garden on nearly daily basis – knives, chisels, axes, shears, sickles and scythes. My father gave me a small pocket knife for birthday and he taught me how to take proper care of it and how to work safely.

I started wood carving that year and I never hurt myself with a knife in a manner worth to mention until a few years later. That one time I was slicing a piece of paper out of sheer boredom, I got overconfident, I misjudged the distance and sliced into the tip of my index finger by accident. I nearly cut the tip off on one side. My father went into full panic mode, but he nevertheless managed to compress the wound, stick a patch on it and haul me off into the town to my mother’s workplace (this was still behind the iron curtain, we had no car and no phone either). There we got a ride to the hospital where the wound was deemed not worth stitching up, just a tight enough patch will do. It turned out later that I actually have damaged a nerve, and the piece of flesh that was nearly cut off, although it grew back together nicely, was completely numb afterwards. But about three years later I got back the sensitivity, so it was only a temporary hindrance.

I have learned my lesson and for next 25 years I again did not hurt myself in a manner worth to mention. I did get a small nick with a knife or a chisel now and then, but nothing that won’t heal with a simple patch in a few days. And almost never when working, mostly during sharpening. I was always careful. The history repeated itself nevertheless.

The weekend before last I was splitting wood for starting fire. I have done this a thousand times before, and an axe is actually one of the instruments that never got to taste my blood so far at all, or at least I do not remember it (I definitively got a splinter under my skin more often). But a piece of wood had a knot in it, i did not notice it, and the axe instead of going through and slicing of a nice splinter went to the side and into my left middle finger. In nearly the same manner the knife did all those years ago.

One advantage of having really, really sharp tools was immediately apparent – I did not feel a thing. I immediately put a pressure on the wound with my thumb so no blood came out. I went up from the cellar, asked my dad to go and start the fire and my mom to prepare disinfectant, a bandage and a patch. Only after I disinfected the surrounding area, i have let go of the pressure and allowed some blood to flush out any debris the axe might have dragged into the wound. I also got a good look at the damage. Then I again applied pressure with my thumb, cleaned of the blood, applied pressure with a gauze and wrapped it tightly with an adhesive patch.

I have thought it to be prudent to not play a hero and get stitches, so I wanted a surgeon to get a look at it. Nowadays we have a phone and a car. For a wound like this I did not think to be necessary to call an ambulance. But since neither of my parents can drive, I had to drive myself to the emergency surgery at the hospital 40 km away, with my dad in the passenger seat in case it all went wahoonie shaped and it turned out I need an ambulance after all.

The nurse was a bit bad-tempered, but I am used to that. It is a difficult profession having to deal constantly with idiots like me, so I do not care for sour faces from medical staff that much. But I attached the band-aid very tightly and she got irate that she cannot find the end and unwrap it, so she said “Well, when you wrapped it so tightly, remove it yourself!”. What could I do but laugh “Taking it off was the least of my worries at the time”? I could not find the end either, so I asked whether they have scissors. “Not ones that would get in there!” which is a statement I very much know to be false but fuck it, I was not in a mood to argue. I took out my multitool, opened the blade and removed the bandage. It turns out there is an advantage to having a very sharp knife that can be opened with one hand only after all.

I got three stitches and a tight bandage on top of that. The surgeon was nicer than the nurse and when I said my goodbyes “Thank you and I wish you an uneventful and boring rest of the weekend” she laughed a bit (the nurse did not move a muscle).

For last ten days I was unable to write properly due to the thick bandage. I learned ten finger typing in high school and I am so used to it that writing without the use of my middle finger was very difficult – I could do it, but I kept tangling my left hand into a pretzel all the time. But that particular torture is hopefully over for now. I got no complications, the wound is healing nicely and I got the stitches out. I only have a small band-aid now and I have full use of my fingers – with care, of course. I will have second crescent-shaped scar and maybe partial numbness in the tip for a few years. That remains to be seen, so far it seems I might not have even that.

The lesson I learned from this is that I never ever should get too confident in my skill and lose vigilance. Shit can happen anytime. Second lesson, or perhaps experience, is that I still can keep a cool head in such situation, whether the injury happens to me or to someone else (at least that was luckily the case so far). That is somewhat comforting. Third lesson I knew already – a really, really sharp tool is better and safer. A blunt axe might cause shallower wound, but the edges would not be clean and easy to stitch, there would be some blunt trauma on top of it and a much bigger area for dirt and an infection to get a hold on. And it would probably hurt a lot more – I banged my thigh on a table edge the same day and it hurt a lot more than this cut ever did.

I hope this weekend to be able to do my share of writing again.

Crimes against mankind: fat women existing

Let’s get it out of the way, right at the start: I’m fat. That is a simple statement of fact. I’m not a bit “on the chubby side” or have “womanly curves”. Actually, I find such statements pretty offensive because they imply that being fat would be a horrible thing (it isn’t), but I’m not (I am). Listen, everybody with eyes to see knows I’m fat. this is not a moral statement. This does not tell you much about who I am or what I do. It has absolutely no relationship to my character.

Yet, when you’re fat, especially when you’re a fat woman, your weight is everybody’s business, usually under the guise of being “concerned” about our health.

So, Nike creating a range of sportswear for fat women should be universally lauded because it will encourage us to finally take up that exercise you’ve been bothering us with for the last few decades, right? Right?

Comments on the picture:

You don’t have to be so PC, Nike, this is trying too hard, fat isn’t pretty nor healthy.

Another guy, Aaron,  feels obliged to explain this to us in detail:

Nike have officially just lost my respect and cracked other the PC brigade of having to keep people happy (sic), next you all will be supporting severe obesity where people can’t walk or get out of bed lol health and facts have literally gone for all you snowflakes. So we want people to be happy with their weight, even if it causes cloths (sic) higher blood pressure, diabetes, sever (sic) difficulty in breathing and lazyness (sic), is this what you loneys (sic) all support because if so then you’re supporting a person’s insecurity to try feel proud of themselves but really hate every inch of there (sic) body and emotionally eat themselves fat, and you still support it, anyone who supports this is the reason, and proof that this world is losing touch with keeping healthy.

I don’t know, but it seems like Aaron is a bit, uhm, emotional about a clothing line for women. Especially given that this is sportswear, so it’s actually designed for people who want to, you know, exercise. But Aaron’s (and other guys’ anger is well justified, because if we make clothing that fits fat women (somehow fat men are of little concern even though statistically, there’s more of them), they may actually feel good about themselves (because nothing can cause grumpiness like an ill-fitting bra) and that cannot be permitted. Because as Aaron and every other dude like him knows, we’re categorically miserable. Really. We may seem to live happy and productive lives, have friends, lovers, lots of fun, but as Aaron knows, we’re actually just faking it (you cannot be productive anyway because fat people are lazy, don’t you know?).  The obvious solution for this is that we just stop being fat. Somehow. While please not existing in public, because that really offends dudes like Aaron. No exercise and sports either, because somehow that supports us in being fat. Sorry if that logic escapes you. It’s because you’re a woman, or fat, or both, or neither. Don’t ask me, I don’t make the rules.

Or maybe we just see Aaron for the sad entitled prick that he his, feigning concern for our health while being very upset about a company selling clothing that makes it easier for fat people to actually exercise and do something for their health*.

And  I’m sorry I have to say it, but Aaron, you should have sat still and paid attention in your English class.

*And no, exercise is not about losing weight. Exercise is good for you. Go find something that you enjoy and that makes you feel alive. Forget about your weight.

Cancer Chronicles 22: Ten More Days.

All the stuff. © C. Ford, all rights reserved.

All the stuff. © C. Ford, all rights reserved.

Recently, I’ve disappeared for a bit due to treatment; I’m afraid I’m going to be quite scarce over the next 10 days. I did have an excellent couple of weeks when I started radiation, and I remain grateful for that. If nothing else, that small period of time reminded me that a day will come when I can reasonably expect to be okay every day.

As for now, I’m dealing with being slammed with all the side effects. Palmar-Plantar Erythrodysesthesia has set in with a vengeance, making everything much more difficult. It’s very painful to walk or to even type on a keyboard. My fingers alternate between being completely numb or exceedingly painful. I did have a lot of numbness in the feet for a while, but they seem to be stuck on the ‘painful as hell’ setting for now. The hydrocortisone cream is for the fingers and toes, and it helps a bit. Had to give up the evening walkabouts because of the PPE and sciatica; and my fingertips hurt like hell dealing with my camera, so basically, I’ve been sitting like a lump on a log. I have been trying to get at least some artwork done, but that’s been quite the challenge with these fucked up fingers, so progress in that area has been a snail’s pace. I’ve also spent too many days bent over with severe abdominal pain, which gives rise to severe back pain, yada, yada, yada. I have a bunch of new meds to try and control everything, and had to switch anti-nausea drugs yet again, as it turns out that phenergan (promethazine) speeds up emptying of the stomach, which results in very frequent trips to the lav, when I need all that jazz to slow down. So now I’m taking compazine. The first dose was today, so I’ll see how that works out.

I have gotten through most of my treatment without major mouth sore troubles, but the 5FU got its way this time, and my mouth is a mess. The liquid lidocaine helps, oh but I don’t like the way it tastes! The lidocaine jelly pictured above, that’s for anal use. That part of my body is one sore, tender, burnt mess. I also have an aquaphor/lidocaine blend for that area. All of anus problems are down to radiation, everything else is from the Xeloda. The 5FU didn’t give me much of a problem when doing infusion chemo, while this prodrug form has a much more serious effect on me.

I think my level of fatigue throughout radiation has been better than most; I haven’t felt overwhelmed much, but I have needed more sleep lately, and I’m going to go ahead and indulge that need for the rest of radiation. Every day does see me deeper in Chemorad Space, which isn’t helping at all, I’m easily distracted, zone out constantly, and have a lot of difficulty concentrating on any one thing. It’s odd, getting such intense effects from this form of the 5FU. Naturally, I’ve been told most people have the opposite experience. Just call me contrary.

If I still had a lot more radiation to go, I’d no doubt be looking at a push back because of all the side effects, but both of my oncologists have been playing cheerleader, it’s only 10 more days, “you’re very brave, you can make it!”, which I have to say did make me laugh. Now, if I could just get a drug which would give me my brain back, I’d be in pretty good shape.

As usual, if something else occurs I should have included, I’ll do an ETA in the next day or two, and try to get stuff posted as well.

ETA: PPE is very unpleasant, and unfortunately, there isn’t much to do about it outside of not taking the offending agent anymore. In my case, that’s the capecitabine (xeloda).  Your fingers and hands will swell, as will your feet and toes. (Xeloda also can cause facial swelling, but that’s not related to PPE). Your fingertips will often be bright red, sometimes fading to a dark pink. Your fingertips and soles of your feet will be excruciatingly tender, and just about everything is terribly painful on contact. Walking is painful, and I’ve found it easiest to settle on very comfortable sneakers with a good, cushiony sole. Your nail beds will be very sore indeed, so standard methods of cleaning nails have to stop, it’s best to get them clean by soaking in water. Your fingertips will alternate between “oh gods hurt!” and completely numb, which is challenging on a few fronts. Dropping things involuntarily will happen when you go numb, so it’s best to leave things like polishing your nails to someone else, unless you don’t mind making a mess with nail polish. Also, if you’re holding a drink, use both hands. You may notice skin discolouration on your hands and feet, that goes with the territory.

Have one of those little rubber gripper mats in the kitchen, as getting off even the simplest of caps can be painful and daunting. If nothing else, grab a washcloth to cushion your fingertips when trying to get caps off pill bottles, etc. Taking an anti-inflammatory like celecoxib every day can help a little; I don’t think the steroid cream does much, but you should keep your fingertips and toes lotioned up, so it won’t hurt to use it. Under all the swelling, the 5FU is still eating away at your fingertip fat pads, so stay well hydrated. Whatever your intake, it’s probably not enough. I know mine isn’t high enough now, so I’m scheduling more IV fluids. Basically, you need to stay well moisturized, inside and out. PPE won’t magically go away when you stop the chemo, it takes a couple of weeks for it to disappear, so you’ll need to take extra care for a while after you get to stop.

The Healing Arts: A Tythe Pig No Bad Sight.

Click for full size.

A Tythe Pig No Bad Sight. Anonymous, 18th C, Engraving. Subject: Doctor's Wealth.

A Tythe Pig No Bad Sight. Anonymous, 18th C, Engraving. Subject: Doctor’s Wealth, Tythe Laws.

A Tythe Pig No Bad Sight.

The well fed rich Doctor now Dinner is o’er,-
In his Arm Chair gives way to an Afternoon’s snore,
His Belly is fat, and his Countenance ruddy,
High living’s his practice, the Tythe Laws his study.

The Curate may starve; while to slumber inclin’d
He dreams of the Riches to Doctorship join’d:-
Farmer Hodge brings a Pig to avoid Tythe Law strife,
And presents little Squeak to the Doctor’s fair Wife.

To rouze him from sleep, and his Eyes to regale,
She tickles his Nose with the Young Grunter’s Tail;
Shou’d he start with her tickling & wake in a fright,
You’ll allow a Tythe Pig is not a bad sight.

Going Missing (Admin Stuff).

© C. Ford.

I’m so sorry, but I have been eaten alive by pain all day, and nothing has gotten it under control so far. Tuesday is the all day appointment day: labs/research/oncologist/Y program application/radiation/oncologist/caregiver group/possibly swimming if I stop wanting to scream, and probably more stuff I forgot. So I’m going to flake off entirely on Tuesday (17th).

If I somehow magically get the pain under control, I’ll show up.  Right now, I can’t cope with sitting at all, so the thought of sitting down to do blogging is not a welcome one. My apologies, I hope this will be under control quickly, so I can get back to doing the things I love to do.