Paper, paper, paper.
I don’t know if I can explain this one. I’ll do my best. From the start, you’re inundated with information and a storm of paperwork at a very fast rate. If you’re someone like me, knowledge is good, it provides a foundation to anchor yourself on, but even then, you’re in a situation where this is all coming at a furious pace right after diagnosis. While a part of you is still struggling to process what this is going to mean, in terms of your life, your self, the rest is trying to take all this information on board. A good deal of it penetrates and makes it through, punctuated by periods of what my friend describes as bluuuuuuuur. Those punctuated periods are a very good reason to be sure you have someone with you who can act as advocate; another brain to absorb information, to scribble notes, record, whatever. Later, this acts as an excellent check: “Did they say…?” to get confirmation of what you think you heard. For myself and a lot of others, the shock has not yet set in, but when it does, it tends to fuck your memory up a tad. In the meantime, the information keeps flowing at a fast rate, every time you’re back in for a couple of weeks.
For me, there was the draining task of looking up every single cytotoxin I was going to be given. There were the pages and pages of side effects, finding out what the hell Urea Cream is and where to get it, in case of Hand-Foot Syndrome (Palmar-Plantar Erythrodysesthesia), and so on. (My thanks to my friend for all the info on the cream.) There’s a vast need to be prepared, JUST IN CASE looms large in Cancerland. While you find yourself preoccupied with all the intricacies and complexities of Cancerland, long before you realize it, there’s a whisper of a cocoon being woven about you. A cocoon of isolation. There’s a part of you which starts withdrawing immediately, but oh so quietly. Takes a while to realize the internal tug.
There’s a tremendous cost in emotional energy when it comes to cancer. The people who love you and care for you develop a low level desperation for normal times, a normal moment, the normal you. It’s impossible to not respond to that need, even when it costs you. Many of the people who surround you need to feel needed, and that includes most of your medical folk, and there are times it feels too much to even acknowledge them. Right now, my medical people regard me as knowledgeable, witty, and engaging. There is one hell of a cost to finding that person, forcibly fishing her out, and donning her for the benefit of others, especially when I feel so…lacking, in everything. That’s when you start finding it easier to simply sink inward, into isolation. You do feel very alone in treatment, because as much as people might love and care for you, they are not in your situation, and you don’t gain a true understanding of treatment unless you get to be in it. That’s even so when it comes to all the medical people who deal with cancer patients every day for years on end. Because of that, I think withdrawal into isolation becomes seductive because it seems to be a sort of armor, a protected place, away from everyone else’s needs; away from calculating the expense of answering the needs. There are times it’s very difficult indeed to ignore that siren song, and it always hits you when you are feeling at your most vulnerable, those moments when you think “I can not take anymore.”
This isolation also twines around the closest caregiver, and I cannot emphasise enough how important it is for people to be there for the primary caregiver. Caregivers tend to be forgotten as everyone clusters around the “cancer patient”, but a primary caregiver is also going through shock, and trying to figure out how to cope, and they have all the same information overload and everything else to do. To borrow from the advertising world for a moment, Have you hugged a caregiver today? Or given them a day of respite? Taken them out for a beer or a movie? If you really, really want to be nice to a patient or a caregiver, get a gift certificate for a massage.
ETA: In the comments, Nightjar had this to say about being a caregiver, and I can’t emphasise this enough, either:
Yes, and then there’s the goddamn guilt, which you know isn’t rational but it will creep up every now and then. “Am I doing enough?” “Is there something I could do that I’m not doing to maximize comfort and chances of treatment success?” This tends to get worse when well-intentioned people decide to give “advice”, usually to ask if you’ve been giving enough of miraculously-healthy-food-X or if you’ve been preventing the person with cancer from eating very-unhealthy-food-Y. I know intentions are good, but really, when you hear this kind of thing repeatedly what it begins to sound like is “you are not doing it right”. And you feel guilty because last night you were too tired to cook and just threw a pre-baked pizza in the oven. And it’s all very stupid anyway and it pisses me off because 1) Yes, I already know nutrition is important, my background is in biochemistry, even if it wasn’t, I would have heard it by now don’t you think? and 2) WTF, I’m not caring for a baby, my mom eats whatever she wants to eat and I’m not going to “prevent” her from anything. Seriously, people need to learn that just saying “I’m sorry, let me know if I can help you with anything” is fine and is enough. There really is no need to follow it up with anything if you don’t know what else to say.
Yeah, don’t do that kind of thing. Unless you’re a fellow caregiver who might be able to offer a really good and helpful suggestion, keep your ideas to yourself, please. We all know about pink positive crap, we all know about the diet this, diet that crap – it. does. not. help. Also, in case you might not know, cancer treatment is bristling with nutritionists, that’s part of treatment too. Just as it’s important to remember the person with the cancer is still the same person, that applies to the caregiver, too. Resist turning people into “The Cancer Patient” and “The Caregiver”. Also, as someone who can be world class stubborn when I want to be, I’ll confirm that no, you won’t get anywhere trying to boss someone with cancer around when it comes to food. No one knows better than we do about that, and as I mentioned, there are times we plan to misbehave, and we’re willing to pay the price for it. You go eight months without your favourite food or treat. Don’t want to do that? Neither do we. Another word about diets: specific cancers call for specific diets, there’s no “one fits all”, which is why you have meetings with nutritionists for your particular cancer. If you’re a bystander to all this, trust me: you do not know best about diets. More than anything, a caregiver will appreciate respite, a nice gift, an offer of help, left right there.
I wish I knew how to adequately explain what it’s like to be able to talk with someone who is undergoing the same treatment you are, for the same type of cancer. Weirdly, it’s rejuvenating, because you can just talk. You don’t have to explain anything at all. It’s a different sort of normal; it feels amazingly normal because you can just talk, just as you would about any other thing. It’s Cancerland normal. Unfortunately, I imagine it’s a rare thing. My friend and I are damn neared twinned on every aspect of our cancers and treatment. Being able to talk with her has, to a great extent, kept me in the present, even when I’ve been feeling at my most exhausted and disheartened. I can’t not respond to her, because it’s simply too important to keep our metaphorical hands linked. She is the only one who knows.
This is not to say that all the other wonderful people in your life don’t do anything to help you normalise out, or lift your spirits in a myriad of ways, they do. Every pull out of isolation helps, every distraction helps, every serious discussion, and every silly discussion helps. Stories help. They all help to hoist you out of that internal spiral, because you do love every person back, and you do need them. Everyone who hangs out at Affinity does me good beyond measure; one of my greatest pleasures is how the conversations on the chronicles weave about, full of stories, expansion, humour, advice, suggestions, ideas, and compassion. Being there for someone with cancer is everything. Fucking everything. All that said, there are times when it feels like responding is going to be impossible to achieve, it’s simply a mountain much too high to climb, and you’re out of breath, energy, and the will to continue on. In the end, you do find yourself able to respond, and you slowly realize you feel better for it.
It’s not that we don’t know there’s an end in sight, but that end feels like ——————————————————->, too far out of sight to rely on in any way. The dreary routine of treatment gets to you. The fact that you just start to feel well again is right before you get infused again, that’s a piss and a half, to say the least. I’m right now starting to feel okay again, and chemo is today. Can’t be fuckin’ happy about that one. You have to develop new habits, fluid intake if you’re bad like me; everyone has to adjust their diet. These things truly help, but it can be hard to gauge how much, it often seems they aren’t helping a hell of a lot. The first time you misbehave, and you know we’re all gonna do it, you’ll have that message driven home, usually in the form of something you really don’t want to see, like ramped up diarrhea. I have officially decided that if I get addicted to anything, it’s gonna be fucking Immodium. I literally cannot make a move without it. That’s dependence. :D
That’s all I have for everyone today, I’ll be back late, and probably have another collapse straight into bed when I finally reach home, so FUCK CANCER, KICK ITS ASS, and everyone? Take care of yourselves and everyone else. Take care of one another. And I can’t thank you enough for taking such amazing care of me, you all have my heart.
1) Wow, just wow.
2) Please, yes, everyone should hug a caregiver today.
3) The Cancer Chronicles are well on the way to being a full length novel. Brava!
4) As always, Hugs.
Oh Caine …
I am not glad that your friend has cancer, but I am glad that you have her.
One of the thing the Pain Clinic I go to have done is set up a follow-up group to the Compassion in Pain course they run. None of them have the same cause of pain as me -- and I am envious of those who do share the same cause and can share experiences with more understanding -- but even so there is tremendous value in being with other who have chronic pain, who understand the restaint one operates with even your closest, because telling them the total truth would just be too devastating. It is ony a pale reflection of what you are going through, but I do understand the pull to isolate oneself and the immense support someone who understands can give. Plus to lighten the subject a little, one of our group deals with her pain to an extent by baking and we get to support her by having to eat the results -- very hard ;)
Stories help, you say? Shall I offer one? It’s the weirdest health issue I’ve had, and has nothing to do with cancer. Just skip if you’re not up for it.
A good number of springs back, it was time to take the cover off my backyard pool. As usual it had a big puddle of water and crud on top, so I got the hose out of the shed to start a siphon.
Like most idiots, I was in the habit of using suction to get the siphon going. I stuck one end of the hose in the puddle and gave a healthy suck on the other end. But I kept it up a bit too long, and got a sudden blast of water into my mouth and throat. And after a few big coughs and staggering around for a while trying to get my breath back, it became clear that there had been something else in that water, and it was now down in my throat and not coming out.
Well, after a while I coughed up some dead leaves and such, and things got less “ohgod I’m gonna die” and just “feels weird in there”. But it didn’t go away. I went in to my doctor’s office and they took a look but couldn’t see anything. They suggested that the leaf litter (or whatever it was) had irritated my throat and would probably clear up; if not I would have to go to the ER.
So I went home and waited a while, still coughing and gagging occasionally but trying to let it work itself out. And then I coughed up… an ant.
That’s when I headed to the ER. The admitting nurse was skeptical when I told her I had a problem she’d probably never seen before: “Oh, no, I’ve seen everything”. So I said “I have ants in my throat,” and she sat there for a beat and then agreed, that was a new one.
Long story shorter, they snaked a scope down my nose and found that a whole lot of ants were in there, clinging to my poor throat for dear life. They put me under and went in with a suction thingy and got them out. They kept me overnight and sent me home the next morning. Follow-up showed no long-term issues.
Obviously the ants had made a nest in the hose while it sat in the shed, and the blast of water had forced them out of the hose and straight into my throat. Needless to say I no longer suck on hoses to start a siphon.
Final tidbit: years later I went in to the same hospital for back surgery. They still remembered me! There had been stories told for years about the “ants-in-the-throat guy”.
@3 Don, c’mon !! You’re just showing off !!
DonDueed@#3:
So I said “I have ants in my throat,”
I’m gonna stop reading there and wait ’till my heart rate drops.
DonDueed@#3:
So I said “I have ants in my throat,”
*runs away screaming*
Well. At least is wasn’t earwigs.
Ms. Ford. If you haven’t already, please consider signing up to WhatNext.com .
ALL of us either have cancer (I’m 7 years post surgery for Stage IIb prostate cancer) or are caregivers for cancer patients.
Don’t forget that we are all in this together.
fusilier
James 2:25
All that said, there are times when it feels like responding is going to be impossible to achieve, it’s simply a mountain much too high to climb, and you’re out of breath, energy, and the will to continue on. In the end, you do find yourself able to respond, and you slowly realize you feel better for it.
I am sure that I can speak for the commentariat on this: we understand that you’re going to sometimes be quiet. Don’t feel bad if you’re not responding to our expectations; we’re just glad to hear from you when we do. It’s like a gift -- best with no strings attached; enjoyed not expected.
DonDueed@3,
But you didn’t tell us -- what happened to the ants???
chigau@#7:
At least is wasn’t earwigs.
My dad had a grad student who was staying in a not very nice apartment in NYC. One day the student headed to the hospital because of an ear ache and weird sounds. It turned out that he had a pretty good nest of cockroaches going on.
Throat ants, ear wigs, gaaaaah! All these critters are not in the right places!
Marcus @#11
*runs further away screaming more loudly*
@7 Chigau, at least is wasn’t fire ants.
Raucous Indignation@#13:
I suppose one could say “at least it wasn’t snakes.”
I’ve encountered large families of baby snakes in pipes. Over in my barn there’s a feed-bin I don’t open so much anymore, since I discovered that it is basically Pebble Beach for black widow spiders. Come to think of it, I wouldn’t want to gargle with a hose-load of them, either.
Ants? Earwigs? Cockroaches? All the EEW!! warnings.
All the MENZ! And special greetings to Rick.
Sideways.
Take care.
At least it wasn’t fire snake black widow antwigs …
Marcus @8 definitly spoke for me. Take the rest you need to funtion, we will not leave here.
The helping partners need love and care, too.
All the best wishes!
Warning, gross bugs in the body story ahead.
When I first started nursing we had a woman come through the ER with a foot ulcer. She presented with a bandaged foot that smelled grangenous. It was really foul and the bandage itself was stained in various shades of brown and green. And it was a really bulky badage, too. We started to unwrap it and unwrap it and unwrap it with the smell getting worse and worse. As the dressing started getting closer to off it started to writhe and wriggle and as the last of it unwound, it came off covered in maggots. They were everywhere. In the wound, on the floor, on my hands. I had to step back and take a few deep breaths. It’s the closest I ever came to throwing up on the job. As it turned out, the patients husband had put them into the wound to help clean out dead tissue. And they had. Natures little clean up crew, those maggots. We never did ask the Mr. where he got the maggots. Probably best not to know.
Don Dueed:
:falls over laughing: That is one of the best stories I have ever heard, hands down, I can’t thank you enough. Yeah, I have cancer, but I don’t have ants in my throat! That will become a watchword with me, and and excellent response to the question of “how are you?” when I don’t know what to say. That’s a priceless gift.
To all, I’m going to feed rats, then myself, and have a collapse. I came home with a scrip for stronger morphine, in pill form this time, because that blue tastes hideous. Once again, I did not have chemo, I’ll explain tomorrow. Basically, I’m within much stricter constraints because of the trial. If it weren’t for that, would have gone ahead today. Thank you all so much for such an entertaining thread!
Caine, you have been writing very eloquently about your experiences. I find it remarkable because as you say, emotional energy can run extremely low in situations like this. I know mine has been low and I’m not even the one directly affected.
Yes, and then there’s the goddamn guilt, which you know isn’t rational but it will creep up every now and then. “Am I doing enough?” “Is there something I could do that I’m not doing to maximize comfort and chances of treatment success?” This tends to get worse when well-intentioned people decide to give “advice”, usually to ask if you’ve been giving enough of miraculously-healthy-food-X or if you’ve been preventing the person with cancer from eating very-unhealthy-food-Y. I know intentions are good, but really, when you hear this kind of thing repeatedly what it begins to sound like is “you are not doing it right”. And you feel guilty because last night you were too tired to cook and just threw a pre-baked pizza in the oven. And it’s all very stupid anyway and it pisses me off because 1) Yes, I already know nutrition is important, my background is in biochemistry, even if it wasn’t, I would have heard it by now don’t you think? and 2) WTF, I’m not caring for a baby, my mom eats whatever she wants to eat and I’m not going to “prevent” her from anything. Seriously, people need to learn that just saying “I’m sorry, let me know if I can help you with anything” is fine and is enough. There really is no need to follow it up with anything if you don’t know what else to say.
Voyager @ #19
Now while I don’t like them elsewhere maggots in wounds do not bother me, I know they are used in cases like chronic skin ulcers that won’t heal with a lot of success and somehow that makes the difference. There is an industry producing clean maggots for medical use, well actually producing dressings with fly eggs at the right stage. My MIL had an extremely persistent ulcer that would not heal for months and it was nearly at the point when the skin care team were going to have to use the fly egg dressings. I suspect that the prospect made my MIL obey the skin care team’s instructions rather better than she had been, particularly the resting with her foot up bit, because the ulcer suddenly started to heal!
Nightjar @ #21
That desire to offer something that might ‘make things better’ seems to overcome otherwise intelligent people’s ability to think through the implications of what they are saying. It is extraordinarily difficult to deal with as while one knows they mean well being told, in effect, ‘you are too stupid to have thought of this’ certainly makes me want to tell them to fuck right off. I have compromised by either asking what scientific evidence there is to support their suggestion or in the case of a perisitent insistance that I try acupunture to lay out the lack of good scientific evidence supporting it’s use. Passive aggressive rather than directly confrontational.
Thanks, DonDueed!
Your story instantly elevated her spirit, to the point of laughing uncontrollably!
It does help deal with the question, “How are you feeling today?” conundrum.
Today?
WTF does that mean?
It’s just a day in the life of living life. “Not as good as the day I got Married”, Not as bad as the day “I got diagnosed with cancer”.
Anything in between is pretty much moot. Just another day at the job, Whatever that is, Just a way to support the way you live, supposedly happily.
Thanks to your story, She can offer up the “Ants in my Throat” , and say, better than that!
Thanks, again, DonDueed!
Caine, I’m so glad my little tale of woe lifted your spirits a bit. It wasn’t much fun at the time (especially the first couple of minutes, and the tube-up-the-nose part) but fortunately it had no long term consequences.
I don’t even want to think about the baby snakes, spiders, or fire ants scenarios! Those sound potentially lethal.
Anyhow, FUCK CANCER AND ANTS.
dakotagreasemonkey, I didn’t see your post @23 before I sent mine. I take it that you were present when Caine read my story. I never expected that much of a response. Maybe my “bad day” can now be filed under “bad things may turn out to have silver linings”, eh?
KG @ 10: I’m afraid that the doc’s suction scope wasn’t too gentle on the little beasties. Last I saw of them, their dismembered bodies (maybe a dozen of them, all told) were corked up in a little glass tube. I suspect the doc hung on to that for a while. Maybe I got written up in a case study!
DonDueed
I googled, saw this title and got excited, but it can’t be you, there was only one.
I bet that little jar is still sitting on a desk somewhere, inducing questions, wonder, and awe.
I usually don’t ask of people with a serious medical condition.
It’s usually more like, “Can I shovel your sidewalk or do your laundry?”.
.
I hang out with alot of Japanese people.
Heaven forfend anyone actually asking a direct question.
I must say, my wildlife is behaving remarkably well….
You should seriously consider publishing them. The cancer book you actually need. 100% positive thinking free
As for caregivers: Do give them hugs. On the other hand, you get hugged right back!
I’m in a particularly bad place right now and I know that seeing my beloved worry about me is kind of not helping. But we can pull it through together.
Caine
Prepare for incoming load of life in technicolor.
rq@26: Interesting! Now I know I’m not the only one. But as you noted, that’s not me. Many other details are wrong too (age, location, etc.)
Nightjar, I edited the post to include your comment, because you brought up some vital points, and I thank you. I still don’t think deeply enough about the caregiver side, and I don’t have that perspective, either.
By the way, if anyone would like something included and brought up in a chronicle, or would like to do a guest rant, please let me know! I’d be more than happy to set that up.
Giliell:
Yeah, it’s tough all the way around, but you do know you can depend on one another, and that helps so very much.
Don Dueed: I was hooked up to an IV when I managed to get my tablet to load affinity, and there were only three comments on this post, so fortunately, it didn’t crash. When Rick got back, I read the story to him, and we both fell over laughing. It’s a purely amazing story, and I think you’ll end up being famous here, too.
I might take a chance at sending the whole mess in at the end, after all, not being a writer, I’ve never had the experience of a rejection slip! :D
Okay, so yesterday…I did not have chemo, I was put off another week. If I was not in the trial, chemo would have gone ahead. The restraints of the trial are much more severe than regular treatment, and while my liver enzymes are down, they weren’t judged to be down enough.
Yesterday was remarkably stressful, the hospital was unbelievably crowded (turns out Tuesday is a fave day for everything), so the wait times were bordering insanity. Everyone was frazzled. Still dehydrated though, so I was sent up to 7th floor for IV fluids. Sooo, next week, back to Wednesdays, and hopefully, chemo. At this rate, I’ll be in treatment for two fucking years.
Today is pain clinic, which I expect to be a bit longer than usual, lots to talk about.
I thank you for the poke, I’ll call my son-in-law this week to see how’s he’s doing and if there’s anything I can do for him. My daughter starts her second series of chemo in two weeks, been hell on her immune system.
I guess a delay gives you time to work up to drinking the necessary amount of fluids, it isn’t easy to change the habits of a lifetime around food or drink.
Hope the pain clinic people are supportive.
I’ve been both the reciever of care (chronic pain leading to urgent hysterectomy, then the return of the chronic pain some four years later and on-going) and the giver of care (kidney tumour and odd thing in appendix, kidney had to come out but turned out to be benign while the appendix thing was a one-in-a-million cancer, plus a whole host of other things because MRI’s show up any oddity and they all have to be investigated just to be on the safe side, plus DVT’s in his shoulder still being investigated). It stinks being the carer, how ever rational you try to be you are at times scared out of your mind -- just writing that is making me tear up -- obviously you can’t impose that on you beloved, although there are likely to be times you hare your terror, and while other people care too it really isn’t the same for them. So yes support the carers, give them breaks if that is helpful, be there to listen without sharing your pain other than acknowledging you feel it, give them what will help them individually. As Caine has said about how you treat someone with cancer don’t make all of your interactions about the cancer and the caring, they are still the people you knew before this all started.
Busterggi:
Welcome. Oh, I know it’s rough, my heart goes out to all of you.
Jazzlet:
This is another really vital point, thank you. Next, I think I’ll be writing about breakdown days, and these happen to both patient and caregiver, too. Rick was fortunate in that he works with two people who have been through two different types of colon cancer, he called them immediately after diagnosis and had the major breakdown, all his sharp terror, and they were able to help him so much. A lot of caregivers don’t have that, and it’s really important to listen to them too, and allow them a way to get all that out.
Fusilier @ 8:
I don’t ever forget that. I will consider WhatNext, but right now, I’m on emotional overload, and have little energy to extend myself.
Oh, one other odd thing: I’ve had to stop using a hairbrush. I have hairbrushes specifically designed for gentleness, but they just tear out too much hair now. I’ve gone over to combs and picks -- If you have a tonne of hair like me, the right kind of pick can easily sort tangles without costing you yet more hair loss.
@Caine, #36: You know… I have problems with my hair ripping out too. Of course I don’t know if this will work for you too… I use a thing called a Tangle Teaser. I think you can get those at Sally’s shops. I also use a wide-toothed comb made of horn. Mine came from Etsy and cost about $10.00. I tried a wooden comb, but the horn comb is much better at least for me with my delicate and fragile hair. The other thing I discovered is that really old vanity sets have a brush with super soft boar bristles. I got one that is antique on eBay for less than $20.00. Much softer than any other modern brush I’ve tried.
Take it with a grain of salt. Everybody has different hair and different needs. *shrug*
I am glad Rick has people who really understand, though of course not that their people had colon cancer.
I don’t know how you normally wear your hair Caine, but wearing it up or plaiting it will both reduce the rate of tangling, and spread the load so the hair comes out more slowly. It may not make much difference long term, I don’t know and of course if you never wear your hair like that it may not be something you are comfortable doing.
Kestrel:
I’ll look into a tangle teaser, thanks! My hair is of a type that even sitting still with no hair disturbance, it will start tangling, and it’s always right at the base of the neck, been that way since I was a sprog; just that one place, and now and then the ends, but that’s because my hair is always falling into something it shouldn’t, paint, tea, what have you. Oh, I have one of those ancient brushes, belonged to one of the great grandmas. It’s a bit too soft to be effective, but they are nice, and of course, no one makes anything like that anymore.
Jazzlet, yes, I often wear it plaited, and I’m going to have the whole mess corn-rowed, if I ever have the time, to just make it easier to deal with during this year of treatment. That way, it will be one less thing to concern myself with.
So, pain clinic. It went well, but I’ve been denied my spinal and neck injections, they just won’t do them for cancer patients. Anyroad, I’ll continue the morphine and gabapentin has been added to see if it will help.
@Caine: Well here is hoping that the combination will work. :-( Sorry to hear they would not do the injections. Also glad to hear the morphine has been bumped up.
re: your hair: cornrowing would be amazing and cool. If you decide to start putting it up instead, well, maybe I can help there; I have a few hair toys that could make life easier for you. But the cornrowing is really awesome, so if you have a chance for that, wow, it sounds great.
.
That bit at the back of the neck is so tender too, the worst place to get tangles.
Gabapentin can make you very very fuzzy, though it depends on the dose and initial fuzziness may well wear off. I find it very effective, though sadly I get too fuzzy at the highest dose I could take so I’m on a rather lower dose, still it’s the bedrock of the drug mountain I take. Without it I would be in serious pain all of the time. I hope it helps you without making you fuzzy Caine, if it does it is probably a better drug to take long term than lots of acetomorphin, though I’m on that too.
Oh that is not good news about the injections, I’m sorry. I know they brought you periods of deeply needed relief, however short lived. Hoping the gabapentin helps.
Kestrel:
I was fortunate enough to meet a woman in a thrift store who does cornrowing for very reasonable rates, and she wasn’t at all intimidated by the length, so I need to find some time to just sit down and get it done.
Jazzlet:
Oh, thank you for that. I’m on a small dose right now, 100mg, and I’ve only taken one so far, no noticeable effects. Rick was alarmed by the ‘suicidal ideation’ side effect, and he’s already carrying enough fear and guilt at being away from home from Thursday to Sunday evening, so I promised him I would not up it to two a day until Monday, when he’s home to keep an eye on me. If they appear to help, then Shari will up the dose. Right now, it’s a bit difficult to tell if they help, because I’m on the morphine every four hours. I expect I’ll be able to tell more when I back the morphine off to every six hours.
I’m having to learn to take my meds, too. When it was just the spinal pain, I could push those back out of sheer stubborness, because I don’t like taking meds first thing in the morning, so I’d wait until I couldn’t anymore. I’ve had to tell myself that this pain is not a matter of “dealing until”, but something I need to at least stay on top of, if not ahead of, which means taking the meds whether or not I quite feel like it yet. The other problem is time -- I’m lucky if I know what day it is, let alone what time it might be. I don’t wear a watch, and I don’t have a main clock in the house. I have my computer/tablet/alarm. Even when sitting at the computer, I don’t pay attention to time. I’m always surprised when I remember to look “holy shit, it’s that late?” and so on. So, it’s take morphine, then count out the hours and write them down every day.
Onamission5:
Thank you. I had pinned some hope to the injections, because I identified a spot which would correspond with the back wall of the tumor, it’s extremely sore and inflamed, but it seems the combination of steroids and chemo is not a good one, so there you are.
Ok, 100mg is a good starting dose, I’d be surprised if you saw any effect at it, but it is important to titrate up slowly enough that when you do start seeing effects you notice what they are and doing it slowly also seems to reduce the side-effects.. I am on 600mg three times a day for comparison and that doesn’t leave me fuzzy, 900mg x three does. The suicidal ideation worried Mr Jazz too as I have long term depression and have suicidal ideation without the help of drugs, but it isn’t a side-effect I had or if I have it’s not at a more noticable rate than I get it anyay, in fact apart from the fuzziness at the higher dose I don’t think I get any side effects from the gabapentin at all. If you come off the Gabapentin it’s important to titrate down slowly too.
Managing to take drugs when I should is something I struggle with too and I did find writing down when I had taken the different drugs helpful, though mostly I manage without now. I hadn’t realised that until now, so you have helped me realise that I have learnt to manage the drugs better than I thought I was doing, thank you! I have the time disappearing thing too though, so have learnt to keep more of an eye on time than I used to. Because I do get constipation with the opiates I also have to take a stool softener, but that can’t be taken an hour either side of any drug and is very much better taken with food (or diarrhoea may result) so fitting that in can be a problem, mainly if I’m out of the house or away from home. Then as well there is taking the Gaviscon which must not be done within an hour of taking the Gabapentin. I think one thing that has helped me is not beating myself up if I didn’t get the timings of say the Gabapentin perfect, so right now I’m keeing an eye on the clock because I should have taken Gabapentin at 4pm, but had taken some Laxido at 3.30pm having taken my as needed painkillers at 2.30pm when I got up (yeah, my sleeping patterns are shit). But I’m not berating myself the way I would have done, I’m just typing this, treating Big Jake for stopping barking when asked to (school going home time on a sunny day in winter means lots of excitable teens going past -‘bad teens!’ according to Jake) and now we’ve hit 4.30pm so I’ll take the Gabapentin when I’ve finished up this post.
Jazzlet:
Welcome! That’s a good realisation. I don’t think you quite realise when you start, how much there is to creating a rhythm and a workable schedule for yourself. It’s made a difference having the morphine in pill form, too. When I was first given the oral solution, I’m staring at this huge bottle and thinking “how am I supposed to manage this one?” I wasn’t given capped syringes I could load to carry, and really, nothing says “mug me” more than a big ass bottle of morphine. It also has a remarkably evil taste. :D
Silly Caine, you aren’t supposed to go anywhere, you are supposed to sit at home being mournfully ill!