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  • Showing only topics with the tag "healthcare". Back to normal view
    1. Deciding whether to continue with chemotherapy and immunotherapy

      I have stage four colo-rectal cancer. It's not curable. It's not particularly treatable. I'm getting palliative care, but I'm not yet end of life. They're not offering surgery or radiotherapy...

      I have stage four colo-rectal cancer. It's not curable. It's not particularly treatable. I'm getting palliative care, but I'm not yet end of life. They're not offering surgery or radiotherapy (yet, that may change). They are giving me chemotherapy (capecitabine and irinotecan) and immunotherapy (cetuximab).

      Prognosis is difficult, but if everything goes well I have about 18 months.

      I've had 6 cycles of treatment. I had a re-staging PET CT scan and the results were very good.

      But, here's the thing: chemo & immuno therapy suck. I don't just mean "I feel a bit bad sometimes", I mean "I feel awful most of the time."

      We've just about got nausea under control, but those meds cause constipation and that's causing problems with my stoma. And because the nausea meds are only used for the first week it means the second week I have problems with fast output, and that's causing other problems with my stoma. My stoma team and my oncology team are not particularly joined up. In theory I can build in laxido for the first week and loperamide for the second week but that's complicated because side effects are so variable. And that's just stoma output -- there's a bunch of other stuff around pain, fatigue, skin toxicity (I'm not allowed in the sun, even on bright but overcast days. I have to use three different creams, but not too much of any of them, and they're not compatible with each other), loss of appetite, etc.

      One example of how healthcare isn't joined up and I'm getting conflicting advice (there are lots of these): My stoma team want me to wear a hernia support belt to prevent my hernia getting worse, and to help my stoma work properly. But this is a tight broad elastic belt going round my lower abdomen, right where my diaphragm is, and so it makes it harder for me to breath. My physio doesn't want me to wear the belt because it's interfering with fatigue treatment (which is "do more stuff, but do it slowly, and build in breaks, and FOCUS ON YOUR BREATHING"). My oncology team have no opinion and are leaving it to the other teams.

      I know some people just want more life, and they don't care about side effects. "Do anything you can to give me more life". But that's not me. I'd much rather have 3 months of mostly feeling okay and then a month of active death over a year of mostly feeling fucking lousy and then a few months of active death.

      I don't know how to talk to my family about this. I have spoken to my care team and they're giving me all the options - (1) continue chemo and immuno therapy on 2 week cycles until I die or until it stops working, and try to buidl in better support meds. (2) continue chemo & immuno on 2 week cycles, but build in breaks (3) stop chemo & immuno and focus on pain relief.

      Some tricky decisions to be made.

      75 votes
    2. Hypothyroidism and me

      A little over a week ago, I got an official diagnosis of hypothyroidism from my GP. Fair warning, this post is going to be a little bit of a rambly discussion of my thoughts and feelings...

      A little over a week ago, I got an official diagnosis of hypothyroidism from my GP. Fair warning, this post is going to be a little bit of a rambly discussion of my thoughts and feelings surrounding my diagnosis and other circumstances surrounding it.

      I'm a US American, but I moved to Germany to do my master's degree in 2018 and have lived here ever since. I've struggled with depression and social anxiety since before I moved to Germany, but my symptoms got notably worse in 2020 (perhaps unsurprisingly). In late summer of 2020 my psychotherapist finally suggested I go on an SSRI, but she wanted me to get a blood test to rule out any physical causes. I went to my then-doctor and got such a blood test. Everything was within the normal range except for my TSH.

      For those unfamiliar, TSH is the hormone your pituitary gland sends to tell your thyroid to get a move on. It doesn't directly measure your thyroid function, but it's a pretty good indicator something's up, so doctors use it to screen for thyroid issues. High TSH is a sign of hypothyroidism, and low TSH is a sign of hyperthyroidism. Your average person with a healthy thyroid will probably have TSH between 1.0 and 2.0, but some variation exists. The normal range that doctors use here has 4.2 as its upper limit. In 2020, my TSH value was 4.8. My doctor then said that people with hypothyroidism have higher numbers than that, so I was fine. She wrote my a prescription for a low dose of an SSRI, which did help me to an extent.

      I've been fat for a long time, to different degrees. After I first moved to Germany in Fall of 2018, I quickly lost a lot of weight. There were likely a lot of factors -- I wasn't living at home where snacks were constantly stocked, I was buying food on a student's budget, I was eating out and ordering takeout less because of my social anxiety and shitty German skills, and I was walking a lot more. When I came back to the US for family vacation in 2019, I constantly got compliments about having lost weight, which felt weird. I was still overweight according to the BMI, but more of a classic midsize chubby at that time. But it wasn't to last, and I did start gaining the weight back. For a while it, I attributed this to my getting more takeout and walking less. But a year or two ago it felt like it stopped being directly attached to my activity or food consumption. I went on medication that suppressed my appetite as a side-effect, but I continued to gain weight. Since I was already fat and had been gaining weight for a while, I didn't mention anything to my doctors because I was already getting lectures about how I needed to lose weight and exercise more. I don't know for sure what I weigh right now because I've avoided weighing myself for months, because I'm scared I weigh over 100kg and I can't handle seeing that triple digit on a scale.

      I've tried and failed to become more active and start an exercise routine several times. I joined a sports course at university with some of my friends, but I quit after a couple sessions because I was hyperventilating before warm-up was over. I've tried to do some basic strength training, but I'd be sore for days after even incredibly beginner-level stuff. More recently, my wife and I tried to take regular walks through the nearby park during last spring and summer. But I'd tire out after an embarrassingly short distance, not even enough to get to where we see the ducks (the highlight of the park for me). As the weather got worse in winter I basically stopped leaving the apartment. It's a struggle to put my shoes on without an extra long shoehorn so I don't have to bend over, and anything that requires me to tie my shoelaces is basically off the table.

      I've been struggling with work for the past several months. I can't seem to focus on it, even if I take my ADHD medication. I look at the computer screen and I just can't mentally handle the work. Every day of work is exhausting, even though I work a pretty cushy job as a data scientist and I work from home. I do way less than 40 hours of actual work a week but I'm still too physically and mentally exhausted all the time to do anything but the most trivial household chores. I haven't cooked dinner for myself in months (thank God for my wife).

      I switched to a new GP at the beginning of 2024 bc I was having trouble getting timely appointments at my last one. We agree to do one big blood test covering everything, since I have a myriad of small complaints and it's been years since I've had one. That test comes back mostly normal, except my cholesterol is a little high and my TSH is a smidge above 5. My new GP then says we should do a follow-up blood test to look at other thyroid measurements (this would be directly measuring the hormones my thyroid produces) to see if I have hypothyroidism. I mention offhandedly the interaction I had with my old GP in 2020 and she says that's not how you're supposed to do that; high TSH means further testing even if it's not that high. A few weeks and another blood test later and I've now got a new diagnosis and a prescription for artificial thyroid hormone.

      It turns out that pretty much everything I've been struggling with for years now? May be because of my underactive thyroid. Your thyroid is apparently pretty damn important and it not working right (in either direction) can result in a truly dizzying amount of things going wrong. Depression, brain fog, fatigue, and weight gain are all pretty classic symptoms, but apparently it can also cause problems with your lungs or even contribute to carpal tunnel syndrome. Everyone with a properly-functioning thyroid, take a moment to thank that lil butterfly-shaped guy in your neck.

      I'm so glad to have something that's basically a "feel better" pill now. But I'm left with a sense of deep frustration that I've had so many problems that even I dismissed to myself because I assumed they were just cause I was a stupid out-of-shape Fatty. It turns out it's actually not normal for someone in their mid-20s at my age to struggle to put on their own shoes without assistance, even when they're obese. Being unable to take a short walk without needing to sit down because I'm exhausted and out of breath isn't just because I'm fat and out of shape. I've had no shortage of symptoms heavily impacting my life, but most of them I hadn't even bothered to mention to my doctor because I assumed they were just Me Being Fat and that all I'd get was (yet another) lecture.

      This is, of course, coupled with a lot of anger at my old doctor for not even running any follow-up tests. I've only been on levothyroxine for about a week and I already feel like I have a little more energy. I could have been spared years of suffering if that doctor had only done what she was supposed to. Fuck that.

      But at the same time, I feel such relief. This all wasn't just me being a bad and lazy person. There was actually something wrong. And, even better, hypothyroidism is pretty easy to treat. I just wish I hadn't gone through over three years of unnecessary suffering when I could have gotten this treatment then.

      23 votes
    3. AI IT project management

      Im part of the EPMO of a healthcare system. We just got licenses and an intro to co-pilot for teams, word, excel , PowerPoint. I swear this AI will tell you all the questions asked during a...

      Im part of the EPMO of a healthcare system. We just got licenses and an intro to co-pilot for teams, word, excel , PowerPoint.

      I swear this AI will tell you all the questions asked during a meeting. If you join a meeting late you can ask it to recap the meeting thus far. Did you get a sales presentation from a vendor you need to recap and present to stakeholders. Ask co pilot to create a pdf from the documentation the vendor provided.

      AI is making my job so much easier but at the same time I kinda feel like I’m training my replacement.

      Are you using AI at your job, how are you using it and how do you feel about it use in the workplace and if it will one day replace you?

      10 votes
    4. How many of you wouldn't be alive if it weren't for modern medicine?

      I very much would not be. My son had a rough birth, but it probably wouldn't have killed him or my wife. Both my brothers had children in the last six months. Neither of the kids would have...

      I very much would not be. My son had a rough birth, but it probably wouldn't have killed him or my wife.

      Both my brothers had children in the last six months. Neither of the kids would have survived, and one of the mothers would definitely have died.

      The better question might be: how many of you can say for sure you'd be alive without modern medicine?

      48 votes