September 2019
3 Kudos
Hey, I haven't noticed this mentioned anywhere, so I thought I'd do it myself. From time-to-time, I think these forums are haunted by scammers and predators. Identity theft, romance scamming, it's become very much a part of every-day life now (which I think is a horrible indictment against us as humanity). Anyway, I think they're here to prey on the lonely, the isolated, the dying - which is further disgusting. The first sign-post is flowery posts where you can see that English is a second (or third) language. The second might be if they try to take the conversation elsewhere from the public forums. The third could be mention of personal troubles and problems outside the normal stuff you will see here in the forums. Stuff that hints at money, "I also have a terrible life-threatening disease, but in my country there is no way a person could afford the $4000 needed for treatment" Sorry, this isn't from outright personal experience, just something that I sense from time to time when reading certain posts here. My mother-in-law met a romance scammer, it's truly a sad and quite lame story - I think it's doubly so when the scammers specifically target a person who is already vulnerable. Maybe you're looking toward end of life. Maybe that makes you start to think about your humanity, how to do good things. Maybe you feel a little isolated. Maybe those things combine into the potential to form (what you think is) a friendship with a fellow sufferer who is going through so many of the same things. Maybe as you look toward end of life, the material things of the world start to fade in their significance, making you vulnerable to being reckless with money. Maybe in your other troubles, you miss all the key warning signs that you're dealing with a predator. Anyway, you see the picture I'm trying to paint. My advice is simple. Chat is free. If someone mentions money, tell them to get a job. If they tell you they can't, point them to their local community leaders and suggest they ask for help there. My personal gripe is with scumbags who PRETEND to have cancer and defraud people of cash - but online scamming of a cancer sufferer is even lower, it takes a very worst example of human slime to even consider it.
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September 2019
Hey hey - unrelated comment .. the references to "girly bits" and "lady parts" are really kinda charming That to one side - it's nice to connect with people in your EXACT situation (lady part cancer) and certainly the relatability of someone who had also had a hysterectomy or similar procedure, and wrapping your head around the changes (physiological, social, psychological) .. I'm sure it would be extra helpful to have someone who's shared the same situation. BUT .. if you hit a wall, and still feel that you need and aren't getting some kind of support .. let's say it's a friendly ear …. I'd suggest widen your criteria a bit. Most folks who have been through cancer, in my opinion, have had their outlook changed, and adapt to some pretty common sorts of issues. I think that in many cases it broadens a person's perspective, and deepens their empathy. Even if it's not lady-part specific, I think you could find a friendly ear, and someone who understands the generalities, if not exactly how it feels. Best of luck !
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September 2019
Hey Mate These days you can visit any of these suburban 'GP factories', you just need to take control, sit down with a new doctor (or push your existing one) and say you want to have a colonoscopy and need them to provide a referral. Then you go and get the test done. Blood in the poo - well, it can be cancer, sure. It can also be tears in the rectum from constipation - so if you've ever suffered constipation and strained to poo, don't immediately start thinking BIG C. Until you know what it is, you don't know what it is .. second guessing isn't helpful. Be diligent and aggressive in getting it investigated. I had a tear down there (as a result of constipation from chemo medicine), and I would bleed consistently, gushes of blood, into the toilet - every time, for months. It's a bit slow healing, and if a tear is serious, you can re-open it pretty easily. Lastly - let's say it's some kind of bowel cancer - as I understand it, this profile of cancer is one of the more successfully treatable, and also slow-acting. There are other forms of cancer that can kill you rapidly - a woman can be diagnosed with breast cancer and be dead 2 weeks later, some cancer types are just more volatile and unpredictable than others, I guess .. but bowel cancer (at least by reputation for a layman) is supposed to be one of the better kinds to get (if you have to get cancer). But you don't know what it is .. until you know. Push for a colonoscopy, I think for rectal bleeding that's the "go-to" diagnostic procedure.
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September 2019
1 Kudo
Buddy, your post has a kind of "avert your eyes" fascination for me. I can't explain why. There's something about your seminal fluid that holds a kind of cringing, awkward fascination. Actually, come to think of it, it's a bit like one of those Jack-In-The-Box toys .. I've kind of invested in the idea that at some point it's going to pop, spraying icky everywhere .. and so now .. there's just this small part of me awake at night, wincing in anticipation. So I need weekly updates. How's it going, have you struck white oil yet ?
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September 2019
8 Kudos
Hey, we're not dead yet, are we ? With cancer hanging over your head, it's easy to forget that. You start mentally winding a shroud around yourself, trying to bite the concept of mortality into digestible portions, reach a place where you can make peace with it. But we're not dead yet. I hope to live another 30 years. (touch wood, don't jinx yourself, Simon). I thought it might be worth taking a pause, stepping back from the cancer, and considering this simple question: "What are the three best things in your life right now ?" Big. Small. Funny. Shameful. It doesn't matter. They may only be uniquely good for you, other people may be appalled - you may find the tang of your farts fantastically deliciously smelling and inviting and be quite proud of them at parties. Was just thinking it's worth it as an exercise to think about those things, and to list them out, reminding yourself and others that there are still rich, good, vital things in your world. For me ? 1) my wife and kids: surviving cancer has given me new insights into who I want to be as a human being, allowing me to try and remedy problems with my parenting method, and my performance as a partner. It's enriching and wonderful having these 4 people in my life. I cherish them. I'd burn for them. I'd die today, with gratitude, if I knew it was to save any one of them. 2) Computer games. Luckily, before I got sick, and before my son was diagnosed with autism, I started a small business. It's not anywhere near the million buck golden ticket I need it to be, but it's built on solid partnerships with high performing amicable sister companies, so it has longevity, and it allows me to have free time. When I'm feeling poorly - chemo brain, rad fatigue, or just plain lazy, I've got this VR kit, and play these games in virtual reality .. there's one game called "Fallout 4" .. I actually played the 1st one as a teenager, and now I can enter into this 3D world with virtual goggles on, and interact with this story and environment in amazing and fun ways. I'm an old man .. but hey, I love that shit. (Oh, and on the business, if you ever need travel insurance - top shelf, underwritten by Lloyds of London, that is quite often less than half what you'd pay through your travel agent - hit me up www.simplytravelinsurance.com.au, heh. And write a review. Or five. Help a brother out 🙂 sorry for the shameless plug ) 3) Guitar: I've never in my lifetime been musical, but after finishing cancer treatment, I decided to start learning the guitar. It's almost in defiance of cancer, a way of saying. "First I was afraid, I was petrified .. but I, I will survive". Investing so much time and effort in developing a skill is kinda a way of saying "screw you cancer, I plan to LIVE", and also surprisingly fun and rewarding. So yeah, that'd probably be my top three things. It's not a bucket list, it's not earth shattering insights, it's just three things that matter to me and make me happy. There are still things that matter to you and make you happy, right ? Screw cancer ! Don't let it rob you of those things 🙂
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September 2019
No doubt someone will have already told you, but be super careful pushing non-liquids down the tube. Even stuff that dissolves, like aspirin, can have tiny little particles that can accrue. ALWAYS make sure to flush water down the tube after you put anything else, you can't have too much water anyways.
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September 2019
Hi Mate I tried heaps of things, but regrettably no real relief. Clinicians recommended things to stimulate saliva and taste like butterscotch candy and these little tablets that adhere to your gums and dissolve over night (to help with the dry mouth). When the rancid taste problem was at it's worst, anything that stimulated saliva was a terrible idea .. because even saliva was poison. Still, a major priority to stay hydrated - Every couple of hours I was putting water in the PEG, trying my best to get adequate hydration, protein and nutrition (in that order of priority). Aside from that, I just had to wait it out. If it's really bad now, my suggestion (which you need to weigh up for yourself with your own experiences, buddy) is: - once per week do a taste experiment, sucking on a sweet tasting candy. When you reach a point that it is tolerable (still bad, but not vomitty bad) keep it in longer each time, but if it triggers the rancid taste just spit it - expect that over a period of somewhere between 6 weeks - 6 months, it *WILL* improve. It will eventually go away - in the meantime, optimise your PEG use to get the best out of it (although it was counter to hospital advice to stick only to their formula - blockages issues etc - I put all kinds of things down it .. medicine of course - pain relief, but also stuff like musashi protein shakes, custard, things that were high calorie, high protein, anything that was safely liquid but provided some kind of optimal benefit) - I remember reading 8 weeks as the average time for mucositis to heal .. I think for me it was closer to 10-12, I honestly can't remember. I'd take that as a signal for when the rancid taste problem will also fade (for me the rancid taste issue did seem somehow tied to the damaged mucosal lining, so it can't solely have been a chemo side effect) Sorry mate, I think it's a waiting game - but don't let that stop you from owning your own path - if you think an experiment is worth pushing, trial it. Me personally, I think it's also a priority not to fuck up your processes too badly (force eating poisonous food can form subconscious eating/flavour aversions that could cause you problems down the track, apparently) Only other thing is your swallow reflex, thyroid and neck muscles: SWALLOW: try and find was to do it, even if its a dry swallow just to help the muscles keep their memory THYROID: get it checked once your side effects start fading and you begin eating again - if your thyroid is damaged, you can pile on dangerous amounts of weight fast MUSCLES: try and do/get massages regularly to help with the muscle damage if you had radiation to the neck
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September 2019
2 Kudos
Good and Evil blend into one another like the ole ying-yang symbol, if you step back far enough. Or maybe it's only blurry when analysed through the lens of MOTIVATION (eg doing evil when intending good). I guess if we look purely at outcomes, then it's easier. For my part, I would choose to do good. Strap a big red cape onto me, and kittens will be saved from trees, lost children will be found, holocausts prevented. BUT ... I will also snap more than a few necks. "Look, up in the sky, it's Superdude !" *cheers* "Yay Amazing ! Who will he save today ?" "Oh no ! Look away ! He's landing to snap the neck of that convicted paedophile released on a technicality" *cries of horror as everyone shields their eyes* A crying child asks "Mummy, why does the superhero hurt people ?" Mum: "it's just like those terrorists he tore to pieces last week. I don't know honey, I guess he thinks he's doing the right thing, but it's pretty horrible" Power in the wrong hands is a bad thing. And maybe anybody's hands are the wrong hands.. Anyway, if I got to choose the animal I'd be DNA-fused with, I'm thinking I'd have to go with super-agile lizard .. something that is resilient, long-lived, able to climb walls and regenerate injuries.
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September 2019
6 Kudos
When I was going through my radiation treatment, I would make little jokes. I figured the staff did a pretty grim job, and I might try and make it more human for them, smiles not tears, G'day, how you doin' ? I vividly remember the first lady leading me in there (Not Melania Trump, I mean the first nurse to take me in for treatment). Whether it's learned or natural, these people were all so kind, so gentle and warm and soothing. I asked her, "so what are the rules about animals ?" She was like (gentle, soothing, smiling), "sorry, hon, what do you mean ?" Me: "what kind of choice do I have ? Cat, dog, bird, bear ?" Her: "I thought you were asking if you could have a stuffed toy ?! I'm ... um" (hilarious, puzzled expression) Me: "I figure the radiation will merge my DNA with the animal and give me a superpower, I just want to understand what my options are here. Nobody wants to be "RatMan" or "Cockroach-Man" .. hmm, I mean I guess you'd be tough and whatnot .. " (trials off) There's a strange moment where we've both stopped in this white corridor, looking at each other, me musing, her puzzled. Then her face suddenly breaks open and she bursts out laughing. She was giggling all the way in (and later, leading me out). "Nobody, in all my years here, has EVER asked me that !" (I was stunned, I figured someone must have --- like .. if you go to give blood, you make jokes about vampires) Anyway, cancer gives you a laundry list of PROBLEMS, if you look at intangibles you could say it does give you things like perspective, a higher level of compassion maybe. But no - it doesn't give you superpowers. Except one. I think Cancer Invisibility is a thing. I've read it in these forums, seen it around me and felt it myself. I can't say if it's something that the world inflicts on us (a natural movement by the herd AWAY from the sick animal). (plus a bit of "this is shit, I really dont know what to say or do") It might just as well be self-inflicted (I'm sick, facing death, lost my familiar place in the world, people around me aren't meeting my expectations), whereby you imagine the effect. Whether it's in their mind, yours or somewhere in between, I think it's a real possible symptom that might hit a cancer sufferer anywhere from diagnosis to late after treatment. You can feel invisible, like a ghost living in the shell of your former self. You can feel as though people in your life are pulling away. You can almost feel yourself fading. I still haven't figured out exactly where it comes from, but I do think that Cancer Invisibility is absolutely a real, tangible thing. Being in the mind matters no more than schizophrenia being in the mind - it's still an important and compelling condition, and the only way to minimise negative impact is awareness and proactivity. If you feel yourself fading, becoming invisible - step forward and start singing.
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September 2019
1 Kudo
The word obturator felt familiar, but I couldn't place it - was guessing at a nerve in the lower back - but when I went to search it .... ahhh, sweet weepin' Jesus, terrible stuff. I don't have any practical advice (except that soup is the best mate of anybody who's had head & neck cancer treatment), I just felt that it's such a ghastly thing to suffer with - not just the practicalities of eating, but also just having your overall self esteem rattled (assuming you can look through the face and see the inner workings). I feel such a deep sympathy for someone dealing with that. It's strange, I carry pain and daily problems, but to the outside world I just get judgemental looks due to the obesity (radiation destroyed my thyroid and weight piled on after treatment). It's not a self-consciousness or a paranoia, people do genuinely look at you and judge you ever day. Having an exposed sinus cavity and an obturator sounds cosmetically awful. But also functionally tough too. Maybe try luke-warm to warm soups / broth, easy to eat stuff, and consume it via the spoonful (or even a straw) ? We all have to eat, but we don't all have to eat in the SAME way - it would be ideal to find some kind of enjoyment from food / mealtime, or at a minimum to make it as convenient and functional as possible. Soup is the friend of the head & neck cancer patient, beyond that, sorry, I wish I could give some helpful advice. If he's demoralised by the cosmetics as well, I'd say find ways to rebuild fun - ie what "fun" actaully means. Considering stuff like: - if he's reluctant to go out into the world, but never really been a computer guy, if you're cashed up, get a VR kit and some VR story games - it truly immerses you in a 3D video like story experience that can bring fun into your home - (or expand on existing hobbies or find a new one - I started learning the guitar) - if reluctant to go out into the world, but willing to try, think of some kind of mask or cosmetic prosthesis if you don't already have one, and activities that minimise (the ignorant or the unkind) people from staring and making him feel bad about the missing nose .. stuff like the movies, you know .. it gives normalcy but no staring as youre in a dark room Hey maybe he still has my schnozz and I've misinterpretted the condition, if so, sorry ! I know the cosmetics are secondary to functionality and survival, but I reckon morale still plays an important part in a cancer patient's life. We have to have (and protect) a sense of hope.
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