The hospital staff (nutritionists, OTs, etc) will urge you to eat as long as possible, but the mucositis problem isn't just something you can bash through (if you have the rancid taste one). In fact, trying can cause you longer term issues with food aversion. It's tricky, they want you to eat so that you don't lose muscle memory, forgetting how to swallow, as re-learning how is an effort .. BUT .. many of them aren't conversant on the rancid taste dysgeusia and IT can also cause problems with your swallow - where you get a kind of heightened gag reflex from pattern-based-food aversion, that kind of thing. Somewhere in there, is a solution that fits the individual - which might mean they can tolerate sips of water but not more substantial foods … for me it was total PEG dependency for (cant remember exactly) something like 4-6 weeks, maybe longer. I can only offer one perspective, and untangling the viewpoints of me, doctors, nutritionists, family, himself, yourself … and deciding what to do is a challenge .. but if he's vomiting, it's counter productive to force him to eat. With the PEG tube, you can get large-size syringes from most chemists, and it isn't really so hard to push in 200ml at a sitting .. you just get your water/formula/whatever, in front, and push it down slowly and patiently. 10ml, pause, 10ml, pause. Line looks murky, OK push some water down. Pause. The feeds took me a while, every couple of hours I was pushing down 200ml or so either just of water, or water+protein formula. If he isn't overweight, you need to have a front-foot forward on this as his body will already be cannibalising itself - eating away at muscle etc. So, keeping his weight up is important (unless he's a bit of a fattie, in which case you have some lee-way) - so I'd sit down and do the math on what will allow you to introduce into his gut each and every day: - 300g of protein - 2L of water - 2500ish calories A musashi muscle recovery protein shake has about 250 calories and 32g of protein per serve (about 400ml) You could set a timer, and every 3 hours, ie 8am, 11am, 2pm, 5pm, 8pm, 11pm, push down a serve - with that logic, he'd get all his hydration needs + 1500 calories + 180g of protein. It's not ample, but it is a shit-ton better than nothing, or vomiting up a bunch of soup. Three hourly isn't too demanding. If he gets used to it and can handle more, you push up the calories etc accordingly. Musashi shakes may not be the best product, but I researched it at the time and the numbers were significantly better than the other formula and hospital products. Need that healing protein ! You'll be in for a surprise - you can actually take formula via PEG and even end up vomiting it out via mouth (with rawness and pain), because of the mucus/cough/sensitivity. BUT .. with caution and care you can keep the tube feeds down ... And lets face it .. it's a helpless time .. taking control of getting nutrition/hydration/protein into the body is the one thing you CAN control. Just educate yourself on tube care and all that stuff. Always flush it with clean water after use, etc etc. Hydrated and with some protein/calories in him, you may find that he starts to feel a little bit better overall. THERAPY: no idea, sorry, I do remember with the whole cancer orientation, they gave me two things that might help: - a contact for a CANCER CARE person, a kind of hospital liaison .. could call them and ask about counselling - they did have a kind of group intro session with a psychologist, who went into managing depression, all that stuff (the ultimate irony of a cancer patient committing suicide , I guess). There is definitely a resource attached to the hospital organising your treatment, just need to research it and reach out - NOTE: the staff here .. they have resources tips, counselling lines, all that jazz, so you could look at the resources on this website too. For me, it's bullshit, it's not helpful to talk to a professional person and manage my 'feelings', heh. I'm just wired that way (too independent). Be mindful that if he doesn't WANT it, don't push him. Be there to help him, not add weight to his burdens, you know ? I know as a partner, you suffer as much as he does, but in a different form .. I'd just humbly suggest that you don't project your own expectations/preferences/anxieties onto him, but rather take a good clinical look and be the strategist and general. If he's struggling along and really in the trenches, maybe having you there as a rock is exactly what he needs to get through. By researching all this stuff, I get the feeling that's exactly what you're trying to do. Just be mindful that if he appears to want to curl up into a ball and sleep for 3 days, that may be exactly what is best for him .. and you just make sure he gets to his hospital appointments. Maybe having you sit, hold his hand … who knows, maybe that's something he needs. Not discussion, just an ear there if he wants it and no pressure if he doesn't. Maybe a chance to vent, cry, scream. Maybe an indication that he doesn't have to PLAY IT TOUGH, maybe an invitation is what fits his particular character. It's all about finding the right unique recipe for him. DISTRACTIONS: the riddle of this bit is … finding the right distraction, but not trying too hard. I reckon if you try too hard to find distractions, it can actually have an opposite effect and be a source of stress and frustration. What I'd suggest is .. when he was not sick, think of that thing he'd do when he had all the time in the world and no particular problems. It could be just going full-blown couch-potato and watching every movie ever made starring Bruce Willis. If that's his thing, then let him zombie out in front of Die Hard 1-15. Somewhere there has to be something that doesn't create stress or a sense of effort … sounds like an active guy, lets say he loved boxing .. well, he cant do that right now obviously .. but you could buy an XBOX and the latest boxing game. Even though it might seem immature and not within his normal tastes - playing a game in an area of interest might help him. Dunno, just throwing words out there in case something sticks to the wall. Cancer is an absolute shit show, and I sincerely doubt there's any general approach that can minimise the suffering a patient will go through. Navigating through the next couple of months is going to be really tricky, and it sounds like he's struggling. I hope you can find ways to help him through. Just bear in mind that it's the TRYING that matters. We value outcomes, sure. And of course whatever you try .. well, we all want it to work. BUT cancer can be a very isolating disease. It doesn't just try to kill you physically, it tries to kill your sense of hope and place in the world, your emotional balance. The fact that you're by his side and so concerned speaks volumes, and I reckon knowing that and seeing that (even if any given tactic doesn't work) will have an overall positive effect on his morale. Good luck ! Sorry if any of my rambling is more annoying than useful. I hope your and his suffering that lies ahead is no greater than your respective abilities to handle it.
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Hey Hey I suggest don't read too much into the needle placement. I felt a benefit, but my needles were in the webbing of my hand (no, I'm not Spiderman, I mean that stretchy bit between thumb and forefinger), forearms and legs. To a practitioner, they'll be about "stimulating the chi" or "opening your pathways", hey, I imagine you could even get an indian practitioner that blends the methodologies / philosophies and starts talking about your Chakra. A scientist will say something about stimulating inflammation and the body's autoimmune response, they'll say that if it works, its for an entirely different reason to the practitioner. At the end of the day, the main thing is that the stats show it works .. for some people. There'll be a question of degree too. I suggest going into it with an evaluative frame of mind, and having at least 2 weeks worth of treatment (or whatever the practitioner suggests), and try to guage if there's been a measurable improvement (or even a slight feeling of improvement might actually be worth it). I can eat and swallow a sausage on Australia Day now, without having to sip water with every mouthful .. things do start to get better over time.
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Not too worried about the financial side - I think it's like $27 for a container, and a container lasts about 4 days .. and the whey protein powder is even cheaper and lasts longer. On that basis, I'm spending something like $50 on food for a week .. which, really .. pre-cancer I could spend that in a day. So no worries about defraying costs. Found fortisip to be a bit gross, think it was vanilla, can't remember - didnt try different flavours, just jumped over to sustagen.
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Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.