I thought I'd share my story in case it gives some hope to people just diagnosed, or currently dealing with treatment.
In September last year, I was diagnosed with aggressive, late stage squamous cell carcinoma of the tonsil.
I remember it vividly. A white room. A hospital room. Seated opposite is a handsome young asian man. He has kind eyes. He's a doctor. He's telling me he's sorry. So very sorry.
I have cancer.
Advanced disease, inoperable. He gives me six months to live.
A kick in the guts.
"But .. but .. I have three young children ?". It's at the same time irrelevant .. and it means *everything*.
In the weeks that follow, I learn that it's locally advanced disease, it started with my tonsils and has grown quite large and advanced to my lymph nodes. The prognosis isn't great, but with chemo-radiation I have a chance.
I choose to fight.
That was nine months ago. I won't recount the awful, profound suffering of the weeks and months that followed. I won't complain about the ongoing problems I have today. Head and neck cancer is pretty bad for side effects - they poison and blast the apparatus you use to breathe, eat and smell, after all. If you're dealing with decisions like whether to get a PEG, or how to deal with some of your side effects, I've outlined my experience in a couple of threads in "Treatment & Side Effects"
Today, I found myself once more in a white room. A hospital room. Seated opposite was another asian man. A different man, but he also has kind eyes, although he is much older. He's also a doctor.
But thankfully, he didn't tell me he was sorry.
What he said was ..
Yes .. I beat the cancer.
I've won this terrible battle .. but not the war .. I have five years of monitoring before I can properly be called cancer free. But even so .. it's a victory.
If you're currently dealing with cancer, it isn't game over. Fight. Persevere. I had late stage disease. I was given six months to live. And today, my body is free of cancer, thanks to the orthodox treatments (chemo & radiation) administered by the Royal Brisbane & Women's Hospital.
Best of luck to you.
I have to join the party here and share the happiness in the best news you could possible hear!
You fought the good fight and came out a winner!....Enjoy life in a different way now, I'm sure this has changed forever the way you see things.
So happy for you and your family.
He hasn’t even vomited after chemo.
Thank you for sharing your story....it gives me some hope.
August 19th my husband was diagnosed with cancer in his left tonsil and multiple lymph nodes. They say they can’t operate as the tumours are too close to vital blood vessels etc. It is stage 4 A which they say is treatable. It’s from the HPV virus.
He is in week 3 of intensive chemo and radiotherapy together. He is currently in hospital after having a PEG put in last Wednesday. He was having increasing difficulty eating and swallowing from the effects of radiotherapy. His mouth is a mess already, ulcers are beginning. They say it will get a lot worse before it gets better.
He is really worried about coming home with the PEG and how he will cope.
He is usually a strong man, he works hard and who just gets on with things but this has brought him to his knees. It is hard to watch someone going through this but not as hard as being the patient I’m sure.
‘I think he is getting anxiety which is hardly surprising. One of his Drs says he should still try to swallow and eat a bit so the muscles keep, working but he is getting terrified to eat and gets worked up just thinking about it. I tried to encourage him tonight to try some soup. He forced himself to try and quickly vomited it up and then kept vomiting. He also had his 2nd chemo the day after the PEG was put in so feels pretty nauseous with that for a few days.
Any tips on how I can help him get through this?
G'day - sounds like basically the same disease profile as mine. Not sure about the "He hasn't even vomited from chemo" remark though, I became a prolific vomiter, and even developed a skill of being able to vomit up phlegm and mucus in the airway while keeping stomach contents (inserted via PEG) down.
Best thing is to point you toward a thread I started in "Treatments and Side Effects" in detail it goes through the stages of what I directly experienced, and has a lot of tips and ideas about how to get through the different challenges that came up with each new milestone.
He's deep in the trenches now, and it will get worse before it gets better.
What I did (which doesn't necessarily translate to what he should do, just adds context):
At that point, I would NOT try eating by mouth. I had a thing called "rancid taste dysgeusia" where anything in the mouth has a poisonous and toxic sensation, even water and saliva. I became totally PEG dependant for a few months.
Every 4 hours, I'd put down a certain amount of water, ensuring I got 2-3 litres per day.
I'd put down musashi protein shakes, aiming to get a heightened amount of protein to enhance healing. The normal goal for protein is something like 0.8g per day for each kilo of weight .. so if you weigh 100kg, try to get in 80g of protein .. BUT if you are healing and under duress, you are supposed to get 3-5x that amount .. so if he is 100kg you'd want to get 300g of protein. Only way I could do that was with shakes inserted via PEG.
After hydration, protein then nutrition were my priorities. If he is already at peak weight or underweight you should wind calories in as a priority, and soup just won't do it. What I did to try and maintain some weight was get high calorie liquid foods, for example custard, and insert via PEG.
I'd also suggest reading some literature on PEG safety. The hospital only wants you to insert formula, but anything that you can liquify to a watery consistency you can insert via PEG.
I'd be crushing his medicine with a mortar and pestle and inserting that via PEG also, if everything is making him vomit.
You just can't afford to vomit - the pain is tremendous, unmanning, it will suck the hope from you if you let it. But you also can't afford to lose the hydration/protein/nutrition. The main reason they put the PEG in is to prevent hospitalisation due to malnutrition and similar - which is a reality with a person going through this kind of treatment.
Treat each day as a day of warfare, and get through it. Do your best to stack up whatever ammunition best helps you win each day. Distraction is important - things he loves .. whether it's music, books, computer games … whatever slothful thing he's never quite been able to throw himself into (for lack of free time or whatever), now encourage him to hurtle himself into that pastime.
You need to get through the next 6 weeks. It is bad now. It will probably get worse. For me that darkest days were the 2 weeks directly AFTER treatment finished.
Thanks so much for your reply. My comment about vomiting was he truly hasn’t vomited once, he felt like it but hadn’t up till tonight. Then he made up for it 🤮
He’s still in hospital after the PEG insertion, they haven’t been able to up the rate too fast because of the nausea. They still bring him a tray of food at every mealtime, soup, jelly, custard, that kind of thing. ( he just doesn’t want to eat it) I was encouraging him to try and get some down, now I feel bad as I really think he probably has this taste thing where everything tastes rancid. I think he will just rely on the PEG and sounds like that’s ok. He can drink water still ok at the moment.
He’s not a big guy, started at 88 kg but is down to 82 already. I will show him this thread and see if I can encourage him to join in. I think it might be helpful.
He’s not one for sitting around, he’s pretty active,(usually) not much of a TV watcher. But this has just zapped his energy and he feels he can’t concentrate on anything. I get the distraction thing, we have all tried, puzzle books, jigsaws, headphones to listen to music, books, podcasts etc. but so far he hasn’t wanted to try. Did you have any counselling to get you through this? I thought it may be helpful but don’t know who or where to ask.
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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