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Support resources for families dealing with cancer and other serious illnesses

Started by James Cox6 · · 👁 29 views · 3.9K replies

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Participants James Cox6Lisa White54shadowmason6Angela Wrightbrightgardener8Melissa Moore39James Martinez3Grace Stewart6Megan Fowler78Zachary Howard2Ashley Rodriguez41Douglas Lee13rowdyheron17placidheron24slyseal28jadesailor14Michael Newman3jadetinker42Benjamin Grant6wanderingharbor61cosmicviper76Dana Baker37Jason Torres5Peter Chavez6 …
Richard Kim4 Richard Kim4 Newcomer
2 messages
joined Apr 2009
#281 ·
Greetings.

After scouring the internet, various forums, and news outlets, I have decided to pose a few questions here. Perhaps someone has an insight.

My father-in-law underwent stomach surgery around last Christmas—roughly four months ago. He is 79, yet he was working even on the day he was hospitalized. He worked from 7 AM to 3 PM daily. At his peak, he weighed about 130–145 lbs. To be blunt, he was a workhorse; nothing bothered him until the swelling started in his hand joints. Initially, he assumed it was just physical strain from the job, but he ended up in the hospital where they discovered a stomach tumor. The surgery went fine; they removed two-thirds of his stomach. He was discharged about two weeks after the procedure. Before the surgery, his weight had plummeted to around 100 lbs. Post-surgery, his stomach seemed fine, though he had to ease back into eating since large meals are off the table after such a procedure. However, while still in the hospital, the pain in his knees and hand joints began. It persists to this day. His knees are swollen, and he often needs to use his hands to help himself rise from a chair. He can walk, but the joint issues are our primary concern. Once he manages to get his weight up to around 112–115 lbs, he moves noticeably better. But there is a second issue: his stomach.

This started perhaps a month ago. For over a month following the surgery, everything was stable, but now he experiences stomach pain almost daily, accompanied by constant rumbling. The pain comes in waves... every few minutes, it feels as if something is struggling through his digestion. You can practically hear the rumbling that accompanies the pain. Because this happens so frequently, his weight fluctuates constantly between 105 and 112 lbs. We haven't been able to push past that.

When he is hungry, he has the will to eat, but he limits his portions to avoid overdoing it, which leads to him eating later. He typically eats five or six small meals a day, provided his stomach allows it. We have tried avoiding sweets, butter, milk, eggs, and so on. His diet mostly consists of boiled vegetables, boiled chicken, and soup. Breakfast is usually bread with something simple. Nothing has changed. I have found all sorts of advice online—don't lie down after eating, don't drink liquids during meals, chew longer, etc.—but the problem remains.

There are days when he feels fine, but then a day comes where he eats exactly what he always does, in the same way, and the pain returns.

The doctor prescribed some tablets for the spasms, but there has been no change. He takes Prilosec, but he feels as though the pain intensifies about an hour after taking it. In the mornings, he takes Megace.

Ultimately, the doctors don't seem overly concerned. He isn't undergoing any specialized therapy, though he visits the cancer institute for checkups every month.

Forgive the long message; I simply wanted to explain the situation clearly. Does anyone have an idea? Advice? Some potent herbal remedy? Thank you for any assistance.

Regards...👍
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#282 ·
Laura Williams2 said:Hey everyone. My dad’s fighting lung cancer right now, and it’s already spread to his bones. It’s brutal. Watching him waste away day by day... it just hits different. He’s actually handling the chemo okay, relatively speaking, but the disease itself? It’s like he’s checking out mentally. He won't talk to us, won't leave his room, nothing. He's just totally withdrawn. Honestly, watching him shut down like this is killing the rest of us emotionally. It’s heavy.😳

Look, you guys seriously need to get it through your heads: he’s the one dealing with the heavy stuff here. He's staring down the barrel of being sick, the fear of actually dying, and the dread of all that pain... it's intense. Plus, when you're stuck in a hospital ward, you see things and hear things you can't unhear. It's a lot.
Look, you guys have to stay positive if you want to actually help him. He’s totally checked out right now, living in his own little world. Who knows what kind of heavy stuff is running through his head? Just do whatever you can to make things easy for him. Back when I was taking care of my husband, I went all out with the cooking. Like, I made food so incredibly good he just had to try it. Every single day, I’d make sure his sheets were spotless and smelled amazing—I’d tell him, "Smell how fresh this bed is," just to make lying down feel easier, more comfortable. We didn't dance around the illness either; we talked about it straight up. He knew exactly what he was dealing with. We sat him down and convinced him that he had to kill this thing inside him. That he could do it. That he *had* to. He isn't about to let that damn disease win.
Look, when things were hitting the fan, I made sure to stay upbeat around him. I had to. I was always convinced we’d pull through—just telling myself that even if today sucked, tomorrow would be better. And honestly? It worked out exactly like that. We’ve been grinding through this life together for five years now.
It’s not always a walk in the park, but honestly? It all comes down to whether you actually give a damn. You just gotta have that drive.
gentletiger46 gentletiger46 Newcomer
9 messages
joined Aug 2008
#283 ·
Nancy Hernandez43 said:I can’t help but feel a bit overwhelmed by all of this—the juice situation and then this whole uneasy feeling regarding her hair. It’s heavy, isn't it? The first time around, my father had to step in and handle things because my mother just couldn't find the courage to face it herself. But now? What happens next? You just grab the clippers... you know, the Machine... and you just go for it. Honestly, it is such an incredibly difficult moment to push through. But please, believe me when I say this: she’ll come to accept the wig before you know it.

I have to admit, reading all of this is making me feel a little paranoid. Is it just me? I am actually thinking about cutting my hair short—since I have chemotherapy coming up soon—but I’ve been picturing a cute, short style for myself rather than going straight to totally bald. Why does the mind jump to the worst-case scenarios like that?😢😲😢 When did they actually get their hair cut? I mean, when did it first start falling out? When exactly did that happen? 🙂
Angela Wright Angela Wright Regular
731 messages
joined Feb 2007
#284 ·
gentletiger46 said:Reading this is giving me a bit of anxiety. I’m actually thinking about cutting my hair short myself—since chemo is right around the corner—but I was picturing a cute pixie cut, not just going completely bald right away.😢😲 😢At what point did you guys actually cut it? When did the hair start falling out? What was that timeline like? 🙂

My mom’s hair basically started thinning out on day one of her treatment.
Honey, don't let this get in your head. It's a blessing that the body is designed to regenerate; it'll grow back thicker and healthier than before. Let's pray that this is the only downside to this whole ordeal.
If you want my honest advice, just shave it all off now. It beats dealing with the shock when it starts coming out in clumps, which honestly looks pretty rough. In fact, seeing it fall out is way more jarring than the actual issue itself.
Everything is going to be fine, don't worry.🙂
mellowbison13 mellowbison13 Member
19 messages
joined Apr 2009
#285 ·
gentletiger46 said:Reading this is making me a little paranoid. I am thinking about cutting my hair short since chemotherapy is coming up soon, but I was imagining a cute short style rather than going straight to bald.😢😲 😢 At what point did you all cut yours? When did it start falling out? When did that happen? 🙂

You can definitely cut it short first just to get used to the idea. Don't worry too much about the loss, because it grows back so fast once treatments are done—and thicker than before, like I said. My mom started losing hers after her second chemo session, I think. To avoid having hair all over the house, she just cut it all off and my dad shaved her head. Wigs, scarves, and that's that. During that time, I kept telling Mom to enjoy how smooth her legs were, like a baby's, since she didn't have to worry about shaving anymore... except for the hair loss. You have to find the silver lining in everything; it makes things easier. Plus, washing and blow-drying hair can be such a chore sometimes. At least you get a break from that, and once you're finished with therapy, you'll have plenty of thick hair to figure out what to do with next.🙂
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#286 ·
gentletiger46 said:Reading this makes me feel a little paranoid. I am considering cutting my hair short—since chemotherapy is on the horizon—but I had envisioned a stylish pixie cut rather than going completely bald right away.😢😲 😢 At what point did you all decide to cut it? When did the shedding actually begin? When did that happen...🙂

It is perfectly understandable that you are feeling paranoid.😢 Unfortunately, that anxiety is an inevitable side effect, much like a scar, though once you navigate through the fear, things tend to feel a bit more manageable... In our experience, the first time it happened just before the third round of chemo, whereas the second time it was before the second... The difference was simply that the first time, Mom had such long hair she could hide the thinning patches, but by the second time, her hair was already short and she had to shave it all off to accommodate a wig.

To be completely honest with you, given the circumstances, I have been rocking a very short haircut myself for the last year... so we can just joke about being one "big happy family" sharing the exact same hairstyle.👍

Anyway, before you start your treatment, you should probably find a wig that suits you best, and as things progress, you will naturally see when the time comes to cut it... It will all turn out fine. Your hair will grow back once the chemo is finished...
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#287 ·
mellowbison13 said:Perhaps you might consider shortening your hair first, just to get used to the sensation, though one shouldn't dwell too much on the loss itself; the hair tends to return quite rapidly once the treatments conclude... often even thicker than before... my own mother began losing hers after her second round of chemo, I believe, and to avoid the constant shedding around the house, she decided to cut it all off, and my father shaved her head completely. A wig, a scarf, and the matter is settled. During that time, I kept telling Mom that she should enjoy the fact that she now has skin as smooth as a baby's backside without having to worry about hair removal... except for the hair itself falling out, of course... one must always attempt to find a silver lining in everything, if only to make life more bearable. Besides, the whole ordeal of washing and blow-drying can become quite a chore... at least this provides a brief respite, and once the therapies are finished, you will have plenty of lush hair to decide what to do with...🙂

We used to tease our mother during the summer, claiming it was for her own benefit—since she wouldn't overheat and wouldn't need to shave... 😍 when I see her tonight, I suspect I might be a bit shocked since I haven't seen her in over two months and now she is completely "bold" (that's our little family nickname for her), though I imagine she has quietly come to terms with it, much like everyone eventually does 👍 because, truly, it all grows back again.
mellowbison13 mellowbison13 Member
19 messages
joined Apr 2009
#288 ·
Laura Williams2 said:Hello. My father has lung cancer that has spread to his bones. I watch him decline every single day. He handles the chemotherapy relatively well, but the illness itself has caused him to withdraw completely; he won't talk to us or leave his room. It is mentally exhausting for our whole family.😳

In times like these, one really needs a moment to clear their head, process everything, and get their thoughts in order. Give them some space, but try to encourage them to stay engaged—don't let the situation completely take over. It might be helpful to try something new or make a change; the goal is to use this time to feel better. Or just stick to what they love doing, especially since you mentioned they handle therapy quite well. During my own low points, when I’m overwhelmed with worry about my mother's health, I have no desire to go anywhere or do anything. It's hard, and that's perfectly understandable. But once that sadness passes, there comes a period of positivity where I feel incredibly grateful for everything I have, even if I don't know how long that feeling will last. You simply learn to enjoy the little things, and after all, life is really just a collection of those small moments that make up the whole.

I am not quite sure what kind of person your father is. Some people find relief by talking through their problems, while others prefer to process everything internally. You will likely have to judge the situation yourself and decide how to handle it accordingly.
mellowbison13 mellowbison13 Member
19 messages
joined Apr 2009
#289 ·
Nancy Hernandez43 said:We tease Mom all summer long because it makes things easier for her—no heat from hair, no shaving required... 😍 When I see her tonight, I think I might actually faint since I haven't seen her in over two months and she's gone completely "bald" (that's our little family nickname for her), though I think she's finally coming to terms with it, just like everyone eventually does 👍 because it really does grow back.

It was such a wonderful moment for me when my mom's hair grew back after her chemo. It was this short, silvery style with little spikes, almost like a pixie cut, and it was pure white. It made her eyes pop so much more than they ever did when she used to dye it... she honestly looked even more beautiful. As far as I can remember, she always had colored hair since she went gray before I was even born.
mistyridge5 mistyridge5 Member
25 messages
joined Jan 2012
#290 ·
gentletiger46,

My mom started losing her hair after her second round of chemo.
She’d always kept her hair pretty short—it was easy—and the shedding was actually kind of mild at first, though things really picked up after the third session. At the beginning, she was just trying to get used to wearing headscarves, and we spent some time picking them out together. Luckily, my closet was already full of bright colors and fun patterns, so we basically turned my bedroom into a little fashion runway😉 which helped make that whole transition period feel a bit lighter for her.

Once the hair loss got more intense, she actually decided she’d had enough and wanted to just shave it all off. I think it was probably harder on her emotionally when she would run her hand through her hair and it would just stay in her fingers. As soon as she cleared it all away, she felt much better—especially mentally.🙂

A little while later, she started wearing a wig because she wanted to head back to work; she works in a client-facing role and didn't really want to deal with a constant stream of questions. And honestly, people who weren't aware of what she was going through didn't even notice—they just thought her new haircut and color looked great.
feralridge3 feralridge3 Active Member
54 messages
joined Dec 2010
#291 ·
Lisa White54 said:My wife went through something very similar before one of her chemo sessions, but she ended up receiving the treatment regardless. Your results don't look like massive deviations from the norm. I truly believe they'll proceed with your therapy.

I didn't dodge it; I received my dose. 🙄
feralridge3 feralridge3 Active Member
54 messages
joined Dec 2010
#292 ·
gentletiger46 said:I’ll admit, reading this has me feeling a bit paranoid. I am actually considering cutting my hair short—since I have chemotherapy coming up soon—but in my head, I’ve always pictured a stylish, short pixie cut rather than just going straight to being completely bald.😢😲😢 At what point did they actually cut their hair? When did things start falling apart? I mean, when exactly did this all begin? 🙂

🙂🙂

Look, you know, it’s really not all that bad. 😉 Just imagine how much you’d actually save on shampoo and all those other daily essentials. Honestly, if I hadn't blown all that extra cash on toilet paper, I’d probably be sitting on a fortune by now. 🤣

I used to have such long hair. I decided to cut it short right before my surgery, but then they went ahead and shaved part of my head during the procedure. As soon as I realized that the radiation therapy was going to cause my hair to fall out anyway, I just took matters into my own hands and shaved the whole thing off. Honestly, it’s a total nightmare—you’re constantly finding stray hairs all over your bedsheets, your clothes, and even on the floor. It never ends. 😠
feralridge3 feralridge3 Active Member
54 messages
joined Dec 2010
#293 ·
Angela Wright said:If you want my advice, just shave your head right now. That way, you won't deal with the absolute shock when the hair actually starts falling out, because let me tell you, it’s a sight to behold. Honestly, the visual part is much more jarring than the actual medical issue itself.
Everything is going to be fine, don't worry.🙂

This is actually solid advice. 😉
I used to view hair loss as some sort of minor, routine thing—nothing to get worked up about. I kept telling myself, "It'll grow back, no big deal," over and over again.
But then came that moment where I pulled a clump right out in my hand, and it was a complete system shock. Every time I ran my fingers through my hair, there would be another strand caught there. It was terrifying. 😢
If I ever have to go through this entire ordeal again, I'm cutting it all off the second I start my treatment.🙄
feralridge3 feralridge3 Active Member
54 messages
joined Dec 2010
#294 ·
Since we're already on the subject of hair loss,
it seems like everyone here has dealt with losing their hair due to chemotherapy.
In my case, I underwent radiation on my head. Some of my hair stayed put, while other parts thinned out—though that specific part is actually growing back quite thick now. However, in the areas that received the most intense radiation, the hair is really struggling and remains quite sparse. It’s been seven months since I finished radiation.
Does anyone else have experience with this?
I can't help but wonder if the hair in those spots will ever fully grow back. 🤷
Because it's all so uneven, I've been cutting it down to a millimeter once a month, just waiting for the length to at least somewhat level out.
Benjamin Grant6 Benjamin Grant6 Member
36 messages
joined Aug 2008
#295 ·
feralridge3 said:I didn't dodge it; I just took my dose. 🙄

Regardless of how you were feeling at the moment, I am glad you went through with the chemo...👍
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#296 ·
feralridge3 said:I didn't dodge it, I just got my dose. 🙄


See!
How are you feeling now? You really gotta watch out for viruses right about now! Boost that immunity with whatever you can find! Hang in there!!
gentletiger46 gentletiger46 Newcomer
9 messages
joined Aug 2008
#297 ·
So, does everything just fall out? Like, ALL the hair? I mean, eyelashes and eyebrows too? I can't seem to find one consistent answer anywhere—some people say it's just the hair on your head, others say it's everything. It’s not like I’m going to complain if the hair on my legs falls out, but if it all grows back thicker than before, I might just go jump out of a tree at the local zoo... but right now, things feel pretty critical! 🤣

I mean, what do I actually know? I just know it'll grow back eventually, and honestly, that's the least of my worries. It’s not that I’m ashamed of being sick, per se, but I really wouldn't want everyone to know I'm dealing with this. I know people who would secretly celebrate my misfortune, you know? Plus, I work at the Johns Hopkins School of Medicine, and you know how medical professionals are—they pounce the second they hear about a health issue. I’d much rather talk about other things; just because I'm sick doesn't mean I've lost interest in anything else. And besides, I don't want to be constantly reminded of it. Unfortunately, I had this impression that the hair loss happens more gradually. My old boss had breast cancer, and for her, the thinning was quite slow; even after a few months, she wasn't completely bald. So, I was holding onto this hope that I could at least make it through the summer months with some of my hair left. I'm a bit shocked by how fast this is actually happening.

Thank you all so much for the answers and the comfort; you guys are absolute gems.😍 I see that mistyridge5's mom went through this, so I'm curious about that part—I'm really hoping to get back to work as soon as possible. I finally started working in the field I dreamed about during all those years of studying, and I truly love it. I miss my colleagues, my mentor, and even my boss. I realize I won't have the energy for those 12-hour shifts like I used to, but I'm hoping I can manage enough work to slowly chip away at my post-grad exams. Any experiences or advice? Thanks again, everyone.🙂

feralridge3 — that's wonderful news about the chemo, hang in there! Regarding hair after radiation, I think I read somewhere that there's a chance it might not grow back in the radiated areas, BUT please take that with a huge grain of salt. I've been reading so much lately under intense stress that it's very easy for me to misread or misremember things.

biri — walking in nature with my dogs helps me immensely, especially now that the weather is so beautiful and sunny. People are creatures of the light, and sunshine always lifts the mood, especially when you combine it with nature and animals—it's a total win. Maybe consider getting a pet—a little dog, a cat, even a rabbit—if you don't have one already. It's easier to cope when you have someone to care for; it keeps you from feeling so useless. Not to mention how much it enriches your social life! My mom has this whole "dog crew" she meets with, and they spend every day roaming the parks together, just enjoying life. Honestly, my mom's dog friend helped me SO much during my illness; by pure coincidence, she's a nurse at a private clinic that has its own hematologist, so I was able to get a second opinion and a little peace of mind. Besides, it's been proven many times that petting something warm and soft really helps lower stress levels.
feralridge3 feralridge3 Active Member
54 messages
joined Dec 2010
#298 ·
gentletiger46 said:feralridge3 - That’s incredible news regarding the chemo, hang in there! As for hair loss following radiation, I think I read somewhere that there’s a chance it might not grow back at all in the radiated areas. BUT—and this is a huge but—please take that with a massive grain of salt. I've been reading so much lately and under such high levels of stress that it's entirely possible I misread or simply misremembered something.

I actually asked my oncologist immediately after the radiation session how long it would take for my hair to regrow, and he told me there was a possibility it might not come back at all. 😢
Now that you've mentioned it, it all comes flooding back. I suppose I just pushed it out of my mind when I noticed the hair starting to poke through... but it just won't seem to get any thicker.

Actually, what's really weighing on my mind right now is whether the therapy after the second surgery will be the same. 🤷 Because if they put me through radiation again, I'm genuinely worried I'll be left without any hair at all. 😢
feralridge3 feralridge3 Active Member
54 messages
joined Dec 2010
#299 ·
Lisa White54 said:See!
How are you feeling now? You really have to watch out for viruses right about now! Boost your immunity with absolutely everything you can find! Hang in there!!

I’ve been eating plenty of fruits and vegetables and taking glucan.
This flu really knocked the wind out of me; I was stuck in bed for five whole days.
Honestly, I don't even see the point of that last round of chemotherapy when the relapse happened anyway.
It just causes unnecessary suffering, and it feels like nothing is actually working. 😢
Lisa White54 Lisa White54 Active Member
213 messages
joined Jul 2008
#300 ·
feralridge3 said:I’m eating plenty of fruits and veggies and taking glucan.
this flu absolutely wrecked me, I was stuck in bed for five days straight.
honestly, I don't even get why they bother with that last round of chemo when everything just comes back anyway.
it’s just pure misery, and what’s the point? 😢

My husband went through the exact same thing. Once the relapse hit, he started new chemo treatments, and yeah, they managed to hold it back and shrink things down again.
I know it sucks right now, but there’s a reason for this. They wouldn't be pushing chemo if they didn't think it actually mattered.
As for the hair—my husband started losing his almost immediately after the first round, so I just shaved his head down to a few millimeters. It actually worked out fine. If a stray hair fell out, you couldn't even tell, but he wasn't totally bald. Plus, when it grew back, it was thicker and curly. Like a little baby's hair.
Hair isn't the main thing here; the important part is whether the treatment is working!

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