The first day of chemo outfit: shirt with skulls, bag to match. The rest: black jeans, knee high Doc Martens lace ups, bright red hooded coat.
What your port looks like in use.
That is the giant pump which has to be attached to my port for two days. It’s 6″ in length and 7″ in diameter. They need to hire some people from Intel, it would miniaturized in no time. Has to be above the waist at all times. The other stuff is what I need to flush the port after disengaging the pump.
Cancer. The shock of it all didn’t set in until this past Monday (22nd). That’s when I felt like I was going to fall apart, and it was hard to keep tears at bay. My oncologist asked me if I wanted to start chemo this week or next; I replied “now is best, because I’m at the point of running away and not coming back.” Doc thought I was joking, but I wasn’t. I really wanted to run. So, yesterday was my first chemo day. My schedule will at least be less hectic for a while, and I’m grateful for that one.
Before I talk about the chemo, I want to briefly address reactions to CANCER. There will be a fair amount of people who you thought would have at least given you a “oh, that sucks”, but instead, don’t acknowledge the CANCER or you, in any way at all. If you’re newly diagnosed, don’t be surprised by that. A lot of people simply will not acknowledge or address the issue. There are other unexpected reactions too. Yesterday, stopped by my pharmacy to pick up Dexamethasone, and one of my pharmacists started crying when she found out I had cancer. That made me crumple up inside, and I felt awful for making her feel awful. For the most part, supportive friends and family are right there for you, and you can get to know your fellow travelers in treatment, too.
Okay, chemo. In my hospital, the chemo suite is called The Infusion Center. Long room, more like a very large, central hall, lined with individual stations. Each station has a comfortable recliner, a chair side table, IV stand to one side, and an overhead, swivel mount television with earphones. There’s a stack of extra chairs for whoever you bring with you. You go in, sit down, sign a bunch of forms, and repeat your surname and birth date for the zillionth fucking time. I’m seriously contemplating giving my birthdate as Fall 1529. I don’t think medical would be amused. Every single person you talk to, “okay, give me your name and birth date”. I know they don’t want to make mistakes, but fuck me, I’m beyond tired of it. Being a smart-ass helps, which is why I went with a skull theme. It was mostly appreciated by med staff. ETA: my infusion center comes with a nurse who never shuts up. (I was seated across from the nurses station.) Headphones and your choice of at least 4 hours of music: a very good thing.
I got all the lectures about Oxaliplatin, in particular, the cold sensitivity and possibility of peripheral neuropathy. So far, I seem to have escaped those effects, but it’s early days yet. I have not come close to drinking as much fluid as I have been instructed to do, and I’m still pissing like an overhydrated horse. Which reminds me, forgot to get Kool-Aid. There’s only so much apple juice a person can take.
After chemo, I was feeling starved, so we ate, then we had to do a bit of shopping. I was feeling okay enough to do that, but having that giant capsule swinging about was a right pain in the arse. I was a bit antsy because I had not remembered to take my immodium with me, and while I didn’t really have that “ohgodsfuck diarrhea” sensation, I did have a weird one, which could be best described as the tumour playing at being Jack Nicholson axing his way through the door in The Shining. Just a vague sort of terror that the tumour might do something utterly mortifying while in public. So, remember to pack all the little stuff if you’re going to be out and about after chemo.
Going home, I could not keep my eyes open. I stumbled into the house, managed to shed clothes, and fall on the bed, got the giant capsule tucked under the pillow, and was out like a light for several hours. Woke up, ate too many fudge brownies, went back to bed, read Book of the Night by Oliver Pötzsch, a wonderfully fun book, went back to sleep. Biggest effects so far: crampy, tired, acid reflux and really sore leg muscles for some reason. That set in rather early in the infusion center. Other than that, okay. I’ll be right happy to get rid of this damn capsule on Friday, seriously bad design flourishes in the medical industry. Initially, they wanted me back on Friday to have the pump removed, but when we told them that was not convenient, I got instructions to do it all myself.
Still have the nasty butt pain, and can’t go unmedicated for very long, which is on the annoying side, but I’ll live. Hahaha. I feel another nap coming on…
ETA: Food. Stock up on frozen foods, and easy to prepare stuff, like cottage cheese with fruit or veg. Have things like chicken salad prepared, and bread in the house. If someone loves you to pieces and can cook, have them do up some casseroles for you. The easier it is to eat, the more likely it is you’ll actually do that. You’re much more likely to decide eating is not so important if you wander into the kitchen, and decide you really don’t want to be cooking. Also, stock up on all the ‘bad for ya’ stuff: ice cream, brownies, muffins, cup cakes, banana bread, what have you. If you have colon cancer, by the time you get to radiation, they’ll tell you to do a low fiber diet, which is basically all the stuff which is typically considered bad: white breads, pancakes, pasta, butter, cream, cheese, and so on. Having plenty of goodies around is a way to easily pig out when you’re feeling like it.
“I really wanted to run.” Can’t say I blame you.
I was quite surprised by how overwhelming and strong that feeling was, even with knowing that running would be certain death. Seems everyone has their point, when it all just breaks over your head, and you just don’t want to deal.
I’m awestruck that you’re communicating your experience and thoughts about this so clearly and openly to us. My normal inclination would be to turn inward, into a black hole, and collapse until I sucked up all the light around me. I can’t possibly understand the painful, hard, work you’re doing to keep your head up, and “thanks for sharing” seems pretty inadequate.
Greets to Rick, too.
o7 (that’s the Fuel Rats’ emoji salute)
repeat your surname and birth date for the zillionth fucking time
Apparently that’s part of how they make sure they’re doing ${whatever} to the right person. When I was dealing with Hermann the kidney stone they kept asking me my birthday, and I kept saying, “no, really, don’t send me a card or a present…” finally one of the nurses explained it to me as she was jabbing me with a needle.
Caine, that is the miniaturized pump. The outer shell has to be big enough and tough enough to completely contain the chemo solution if the inner bag leaks. They used to be the size of a 2 liter soda bottle. The motorized pumps are a bit smaller and come in a handy if plain fanny pack. But they are still a nuisance.
Please don’t give into that feeling of running, Caine. A friend of mine, a nurse, was so overwhelmed that she stopped treatment. Her father died from colorectal cancer. She was already very ill when she was diagnosed. She went through chemoradiotherapy, but then stopped all treatment. She couldn’t bear the prospect of surgery, a temporary colostomy and more chemo. She loved animals and physiology. We talked a lot about comparative anatomy. The adaptations of owls, for example. I frequently shared PZ’s Friday Cephalopod with her. This wonderful bright intelligent person who was studying to be a nurse practitioner passed last year. Liz was only 40 years old.
I was diagnosed with thyroid cancer the same year that my cousin and brother died. Let’s just say I know the feeling.
Joseph @ 7:
Holy shit, I’d say you definitely do. A successful cure in your case?
Well, so far, it seems. I had my surgery and radiation therapy about ten years ago, and my yearly scans haven’t shown any signs of recurrence.
Some hospitals have started giving people arm tags like newborn babies with a bar code that is scanned before handing out medication. They say it is reducing error significantly.
there’s such a culture of silence around cancer, almost as if you have done something wrong that people simply don’t know how to react.
It doesn’t excuse that their behaviour is shitty, but it’s an explanation.
Most people are not aware that about half of us will get some form of cancer at some point in our lives.
My mum in law was diagnosed with breast cancer 10 years ago. In the first time Mr completely broke down because he wasn’t just afraid, he was certain that she would die. Why? Because he only knew people who had died from cancer.
Of course he also knew survivors, but he never knew.
His mum did the same: hush, not talk about it, wear a wig so nobody would ever guess anything. She has beaten that fucker and there have been no signs of cancer for the last 9 years and it’s a taboo topic.
Marcus @ 3:
That’s not inadequate at all. Everyone has their own way of coping. For me, if I can help just one person, that’s what will matter, that’s what will give me strength. I have a friend who is several months ahead of me in colon cancer treatment, and being able to talk with them has made a universe of difference to me, and how well I’m able to cope. I’d say being able to talk with someone who is going through the same things is beyond valuable. In that respect, I’m beyond lucky because in spite of our physical distance, there’s a sensation of their hand always holding mine. That really matters.
Once you start chemo, you begin to recognize faces you’ve seen at radiation, or other bits of the medical complex. Some people like to talk, and I’ve found that listening makes a massive difference to those people too, and it’s a small enough thing to do, to listen and engage. My friend put it best, that you don’t want to be ‘cancer patient 1,220’, you want to be remembered and recognized as you. You start seeing that in all your fellow travelers.
Thank you. I still think, and feel, that things are much worse for Rick than for me. He’d argue that, but he’s the one who has to deal with the feeling of being helpless, and he worries like crazy. Now that the schedule has calmed down, he’s back to work, but he spends most of his time worrying, which makes me a bit crazed. I can’t seem to stop stuffing my face, and he keeps stopping eating, which I have to be constantly on him about -- and I worry about him not eating enough when he’s away. I keep telling him he can’t possibly take care of me if he doesn’t take care of himself.
o7.
Joseph:
Yay you, and fuck cancer. Sideways.
Raucous Indignation:
I won’t, for Rick’s sake. At the same time, I would not judge anyone who decided to stop, it’s for each person to decide, and I truly understand the impulse. It’s attractive, because even though you know you would have a short time left, for that time, you get to reclaim your life, and it can very, very difficult to resist doing that, because at least it’s on your terms. When you stick with treatment, it really feels like the CANCER is dictating your life, your every move, your every breath. It’s beyond tiring on a mental and emotional level.
Raucous Indignation @ 5
I sure hope flow mechanics and materials people can still make progress in the design of the balloon pump.
Giliell:
Oh, they do that too, and make you recite your name and birth date 50 times a day.
Oh, I know, and I don’t blame anyone for being quiet. I don’t know what to say when someone says they have cancer, no one does really, because it’s a shit situation, and there’s nothing good to say. I stick with “that sucks. anything I can do?”
That’s a great explanation, right there, of just why it’s so damn difficult for people to face up to cancer, in themselves or someone they care about. I do think people have every right to be completely private about cancer, but I do sometimes wish people who win the fight would speak up a bit more, because there’s so little encouragement to be found, and that can be crucial to those newly diagnosed.
Ice Swimmer:
Me too. There’s no excuse when tech has come so far, and I’m sure the design could be massively improved.
Words are absolutely inadequate for expressing what I feel, but trying nevertheless.
Please stay safe. Lets hope for the best.
I can relate to the feeling of wanting to run away.
I do not know how I would react had I had cancer. My own body has already tried to kill me, but it turned out to be autoimune disease and not cancer on examination. However without modern medicine that autoimune disease would be deadly just the same. Modern medicine is not perfect, but it is awesome. And even cancer can be beaten.
I’m sure your blogging is helping someone. Other than me, I mean. Whether they be sufferers (dislike that term, I do) or family or loved ones. So many people are diagnosed, that cancer touches nearly everyone during a lifetime. I’m sure the lurkers are reading.
Here, we talk about having to piss like a horse of the fire brigade (AFAIK, they didn’t put out fires that way, though).
Ha! Again, that pump is the “massive improvement!” The minimum fluid volume for 4 grams of 5-FU is still 40 ml. That takes up physical space. Some infusion are much larger volume. And while I fell you frustration that’s just chemistry and physics. It can’t be shrunk like an iPhone!
Charly:
Autoimmune diseases are no fun either. I’m all for modern medicine, and I’m counting on beating it. I don’t think anyone can know how they’d react to cancer, it’s just not one of those things you know unless it happens. I’ve been taken by surprise by some of my reactions, and that most likely happens to everyone who gets the “you have this disease!” business.
Ice Swimmer:
That works! Feels like I could put out a few small fires. :D
Raucous Indignation:
Thank you. As for the pump design, I have no doubt whatsoever it could be made in a much more friendly shape, to say the least. It’s amazing what can be done, when people put their mind to it.
♥
I will say this about “running away.” When someone runs, the cancer runs with them. You cannot out run it. And nothing keeps one from reclaiming one’s life like an uncontrolled cancer. That was proven twenty years ago; quality of life is better with treatment than without. Even back then, with less effective drugs and fewer supportive care options, the QOL data clearly showed that patients on treatment not only lived longer, but they also had a better quality of life. Most people find that counter-intuitive; chemo is “so bad,” right? And it is, until you compare it to the alternative.
Okay, okay, okay I’m a just gonna let the pump thing go!
Charly, more than half of all people with cancers are now cured. (Our blogger will be one of those.) And many more will live successfully with their cancers for long years only to die of something else. Yeah, it’s pretty fuckin’ awesome.
Would a hip flask shape be a better for convenience? That would be a more difficult shape as far as strength is concerned than the classical high-pressure tank shape the pump seems to be, granted (I’m not a materials/mechanical engineering guy, electronics is my stuff, though I have studied a bit chemical engineering way back).
It’s not up to me, or anyone else, to decide the definition of quality of life when it comes to any one person. That is something which can only be determined by the person themselves. That is why I said I would not sit in judgment of anyone’s decision regarding cancer or treatment, and I won’t. What each person decides for themselves is okay, no matter how that sets with those around them.
And yes, of course I understand the deep grief surrounding someone who has decided to let things run its natural course, but I feel strongly that only the individual who has the disease has the right to decide the best course for themselves. If I have nothing else to give to people, I will ferociously defend their right to bodily autonomy to that last breath.
rq, ♥ back atcha.
Ice Swimmer:
Yes. That could be easily taped down along the side of the ribcage, and be out of the way. I was thinking of a flattened, rectangular hourglass shape. That would be more workable too. Of course, if the pump was not gravity fed, the shape could not only change, but you’d have much better places to keep it, clipped from your jeans, or shoved in a back pocket.
Absolutely. Rick needs to make sure he is basically healthy with good bp, sugar, etc., and to make sure he eats well and gets enough sleep. Finding something he can do to be able to relax every so often is good. Being a full time caregiver is hard work.
Caine, I’m with you on that. I never judge the choices my patients make. I aggressively treat them as best I can for as long as they are able and want aggressive measures. When they tell me they want to go stop, we stop. Sometimes people want to be referred to hospice for palliative end of life care as soon as they are diagnosed. I’ve been trained to do that too. But there are basic things that can be measures of QOL: pain, nausea/vomiting, energy level, feeling of well being. The doctor doesn’t report or decide on those. Those are self-reported by the patients. What the patient believes and feels. That’s what the oncology community measures when we look at QOL. The actual lived experiences of our patients.
I appreciate your posts, they’re helping me deal with my daughter who got her 3rd infusion this week.
Nerd:
Oh yes, it’s hard work and worrying. I think we need caregivers for the caregivers.
Busterggi:
Thank you. Your daughter is ahead of me by two, how is she doing with it so far?
@32 busterggi, I’m sorry to read that. You have my sympathies. I wish your daughter and you and your whole family well.
They could put the pump on a hat, like those baseball caps that hold two cans of beer.
[strong, oh so strong compulsion to speak about pumps]
Erck!
[truly admirable self-control demonstrated]
Chigau:
:falls over laughing: I don’t know if I could bring myself to wear one of those things. Maybe if it said: CHEMO: GET THE FUCK OUT OF MY WAY.
Raucous Indignation:
Not admirable enough. If there’s one thing cancer patients are in a constant eyeroll about, it’s doctors who pretend they know what it’s like. If you have not had cancer treatment yourself, then no, you don’t have the slightest fucking idea of what it’s like. You do not know what it’s like to be harnessed to a very large, cumbersome fucking pump, with no good place to clip or stash it, and you aren’t the one who is offered a ‘fanny pack’ to wear over your tits. Just because you’re a cancer patient does mean that you all of a sudden lose your interest in dressing well or looking nice, and having someone present you with an ugly ass ‘fanny pack’ to be worn well above the waist is not in the least bit impressive. It’s not helpful, either. Not one person in my infusion center will have anything to do with those damn things. Next time, I’m having it taped on my back.
Doctors, you are good at what you do (well, most of you), but you really rather suck when it comes to actual understanding of the little aspects of treatment.
Oh wow, ice cream tastes bitter. Weirdness.
I don’t have anything else to add (except ice cream bitter? that is indeed weird!!). You already know it isn’t going to be all sunshine and rainbows but hold on to hope to get through the rough days- for Rick and all the 4-legged friends too!
I too find it very hard to say anything other than: Best of luck! It feels not helpful and inadequade. As Giliell said, it is a taboo to talk about. Just like tha bags are taboo. Supportive persons around you really are the best thing to have. I like the skulls theme, what would the world be without dark humor.
“Ice cream tastes bittter”: When I thought that I would end up in clinical chemistry, i read a whole bunch of researchpapers on chemo-trials. They seem to have all sorts of weird side effects. I hope your expereince will not be awful.
Thanks, Patricia!
Thanks to you too, Avalus.
As I said, no one knows what to say, but saying anything is better than nothing at all. Oh yeah, the ice cream being bitter was weird, but I like bitter chocolate, so I ate it anyway. Then my upper lip went very cold and completely numb, that’s the Oxali. So, apparently, I need to be more careful of those effects than I thought.
Caine, um, I was just trying to lighten the mood. As in a joke. Apparently poorly executed. And you are right, I haven’t had the experience of chemotherapy. But I have been in emergency rooms and hospital rooms and operating rooms and intensive care units as a patient. And I have people close to me that have been through cancer care, not all of whom survived. Caine, I am so sorry for what you are going through. I would fix everything if I could. Humor is one of the few healthy ways I have to cope. Please don’t see me as Doctor Raucous. I’m not here as a doctor; I’m here as the person Raucous Indignation. The last time I had surgery a neurosurgeon had to pull a rather large tumor off my brain. Yeah, going in it was 99% certain it was benign and 95% certain there wouldn’t be any serious complications like permanent brain damage and it was fairly certain my heart was fit enough for neurosurgery. I don’t know exactly what you’re going through. But I feel for you and I’m hoping for the best for you. Hugs.
Hi Caine.
I, too, will say thanks for sharing. You are so right that people don’t know how to talk about cancer. I worked in home care for a while and a huge percentage of families would whisper to me their questions. Included in my answer was always the suggestion that mom or dad or whomever would like to be included in the conversation. I can’t recall any patients who wanted less than openness and truth with their loved ones, but lots who wanted more. Cancer care has advanced light years since I graduated 30 years ago. Why hasn’t our ability to talk about it?
Don’t mean to preach to the choir. Your ability to talk about such things with humour, grace and honesty will help people. So will your ability to listen.
Also, the fluids are important.
I had a sibling and a parent who both suffered different forms of cancer over 25 years ago. The treatments now are much better and can really target the cancers more effectively than back then. I know that you will fight this and beat it. Thanks for sharing your experiences. Love and hugs to you.
My mom reported that with her chemo it wasn’t so much that her appetite left as it was that she had a hard time finding food which still tasted like food. I hope the weird ice cream flavors are, if not extremely temporary, at least dealable.
Caine, I don’t know what to say, except that cancer indeed sucks, and it sucks that you’re having to deal with it. *hugs offered*
Oh yay, the hot flashes have started. Forgot to mention that little gift from folfox. Oy. Oh man, I’m not sure if I’m sorry for men having to deal with hot flashes or not. I know, that’s mean of me. I fucking hate hot flashes and hate that I get to deal with them again, 24 years later.
Voyager, Johnson catman, and Onamission5, thank you all so very much. The food thing: yeah, it’s strongly advised you stay away from the kitchen while cooking is being done, because smells can turn you against the food, and anyone who has ever been queasy can testify to that one. I had frozen spaghetti earlier, and it tasted fine, just needed salt. Got my tentacles crossed that most stuff stays okay with me.
Anne, thank you, and yeah, it sucks. It does have its somewhat entertaining moments though. ;)
Caine, thanks for writing. I too don’t know what to say, “be well” or similar sounds so…..lame(?). I did enjoy the chemo outfit description, very appropriate I think.
Joseph Zowghi @ 9: I have a similar experience, going on 23 years now. Glad to hear you are doing well as well.
Jim, thank you! And thanks for the chemo outfit approval, that gives me a smile. Gotta love people who have a warped sense of humour. Thinking about outlandish chemo outfits is a nice distraction anyway.
Wanted to chime in. I had a friend who went through cancer who said to people, “Don’t talk to me like I’m already dead!”. I thought it was good advice. A lot of people withdrew from her too, I guess they were afraid of being hurt? I’m not sure. Maybe they were trying to give her space. I tried to talk to her like I would have always talked to her. Still, it’s really hard. I’m sure I exasperated her at times; well, she and I had very different ideas about what happens when you die. I’m real sure your body just deteriorates. She thought otherwise. Ah well.
Thanks for sharing; I have to say that what they are doing *is* really interesting to learn about. Most people won’t talk about their treatment at all; they act like they want to forget it. That makes it really hard to understand, and to grasp what they are going through. So your pictures are, to me, really great although WOW yes that could sure use some miniaturization! And how about some colors? Also, could the instructions be a little more discreet? Well…. trying to be generous… maybe some people feel reassured when all the gizmos look really “hospitally”. But if people have to walk around wearing that shit, yeah, definitely could be a lot smaller. And colors would help too.
Love the skulls.
I hope any more odd taste things are as acceptable to you as the bitter icecream.
I am fascinated by what you are telling us, while also being concerned about you. I can only say I’m thinking of you.
Mr Jazz had two tumours removed last year. One was in his right kidney, which turned out to be benign, but the whole kidney had to come out as over half of it was tumour. The other was in his appendix and that was malignant, but they got it very early and he has a very good a prognosis, his one year scan showed no sign of any cancer. It is apparently a one in a million people cancer, he isn’t conventional, even his DVT’s are in his arm and shoulder, not his legs like most people.
Please give Rick my best wishes as I’ve sat there watching my partner or waiting for them so I know a bit of what he’s going through. Also add a severe talking to about looking after hmself, as you say he can’t look after you if he doesn’t look after himself.
Kestrel:
It is good advice. Can’t even count the amount of times I’ve said “not dead yet” in the last month and half.
There’s still a strong stigma and sense of shame around cancer; it’s our modern day plague. You get a strong sense that you should quietly withdraw from life, so as not to disturb others. There’s a lot of fear involved, not just of the disease itself, but I think there’s a fear of being drawn into the drama and fight, and a lot of people are not willing to do that. I think for a lot of people, they simply can’t see someone they know as ‘normal’ once the cancer announcement has gone out. And honestly, I’m pretty sure there’s an unspoken sense of contagion, even though that’s not possible.
People don’t want to deal with cancer, they simply want to get back to their own lives and concerns, and they often assume talking with someone who has cancer will be nothing but cancercancercancer. That’s not the case, we usually want to talk about anything but.
Treatment is tough, because in this case, you have to give people tacit permission to do their best to almost kill you. Every instinct you have is going “oh sure, poison me and bombard me with radiation? Don’t fuckin’ think so.” It’s not easy to consent to it, and generally speaking, there isn’t much good to say about any of it, either, it’s bad news city. We’re all taught not to maunder on about bad or disgusting things, so there’s a sort of tabu to break there, too. I’ll have to start schlepping my camera along, so I can get photos of treatment areas and stuff. I think pictures can go a long way in explaining things better than long-winded attempts at explanation.
Jazzlet:
Lucky so far, the ice cream was the only odd thing, but it’s early days. Gotta take it as it comes. I think it’s different for everyone, with a bit of commonality here and there.
That’s the world, thank you.
Wow, that’s a whole lot of lucky! So glad it all worked out so well and successfully for you both.
Done and done. And will no doubt have to done many more times! :D
The billion asks to confirm identification are a Joint Commissions requirement. You can guess why. We were still nagging people to do The Ask back in 2008, when I was in treatment. Having just worked with a huge group of talented caregivers to update our entire TJC data gathering system, it was sort of in the front of my mind as I was in my oncologist’s infusion room, drifting away on a cloud of Benadryl, when I heard someone talk about giving a dose of Adriamycin. Golly, I sat right up and wailed ‘Noooooo, no more Adriamycin!’ which cracked up the nurses, because they weren’t talking about me, but the patient in the row behind me.
We still had medication errors in the system where I worked in 2008, and we’re still having them now.
For blood transfusions, two caregivers need to be present to confirm identification. No one needs to ask why, right?
YMMV, but every one of my acquaintances on some variety of platin developed peripheral neuropathy. Heck, I had PN too, even without platins. I had remarkable success with 30 grams of L-glutamine a day (success that was startling enough that the local GNC had a steady stream of cancer patients asking for it that year). I also added alpha linolenic acid, for myelin sheath support. In the end, it was just easier to eat GNC’s tasty Omega 3 chews. I still had some plantar nerve damage on my right (side where the port was located), and developed a gait problem for which my PT prescribed WiiHab. Worked like a charm. That was ten years ago. WTF isn’t L-glutamine a standard palliative for cancer patients? Why do cancer treatment plans not include recovery and rehab? Stroke patients get rehab, why is a PT eval for cancer survivors not automatic?
So I’ll beg you, while you’re in treatment now, if you have ideas for improving treatment (like flattening out the profiles for giant pump systems), talk to everyone, until you can get in front of a group that includes the manufacturer. Use your professional credentials like a club. People will listen while you’re in treatment, while afterwards, you’re just a whiny success story (standing on the curb, wondering where your tools for recovery and rehab are).
Best wishes for kicking this in the ass. Cancer sucks, but treatment is the worst.
Denise:
Interestingly enough, my friend who is undergoing colon cancer treatment in a different state told me their chemo pumps are more like an old Sony walkman, and electric. It seems there’s no standard, and each hospital gets whichever one they think they can best afford or whatever. Colour me unsurprised. I expect such a lack of standards has a lot to do with why some institutions have a much higher patient satisfaction rate and a higher cure rate. There’s a whole lot in the medical world which needs fixing, to say the least.