Eating during radiation treatment

wbcgaruss said:

Do The Best You Can

Many have been at the critical point where you are. I am rooting for you and praying for you. Concentrate on only necessary things. Eating, sufficient calorie intake, rest, and getting your treatment in each day. Just concentrate on getting these last 7 in one at a time day to day and think of the goal that after this it is over and you can be in complete recovery mode and rest mode. Best wishes-Take Care-God Bless-Russ

This means a lot to me. I'm glad there's the weekends when my body can recover just a tiny bit. It's only five days and then another two days, now. Then, as you say, I can finally go into complete recovery. There's still a lot of work ahead, as I have to actively care about my lockjaw because, as I read, the worst part can come months after radiation. I was never very disciplined in my life and now it has become vital if I want to stay healthy, keep my teeth, etc. As a friendly polish nurse said to me "Forget your former life. It is the past. Look ahead. All that matters is there."

LASNYDER said:

Trismus- yikes

I was warned about Trismus and as of yet have not had that particular issue. Hope it stays away. Was home this weekend and neighbor brought homemade Gumbo over. OMG it smelled so amazing, didnt bother even trying it with all the spices and heat going on in it but I will dream until I can swallow chunky food again. 

I wish I could tell you weather its the chemo or the radiation that is causing me the worst side effects. Im 56 and in relatively good shape. Generally can work around the house all day and not be winded. While home this weekend I had to dig a small hole to fix a sprinkler pipe that broke. Whole job too about 15 minutes. At the end of it I was exhausted, sweaty and shaky. I hope that goes away soon also. 

55 and quite fit. Doing stuff around the apartment takes longer for me too, right now, but I stay in motion as much as I can. Drive to the rad sessions by bike, try to stay on my toes.

Today, I noticed that, after two weeks of calorie drinks, my energy and shape had decreased. Read an article that the quality of those drinks was allegedly rather bad and that some people got sick from them. Same thing with PEG food. I was on PEG for weeks and it's true that my weight and energy had been going downhill during that time. So, today, I decided to switch to self-made "smoothies". I'm still not sure of what a smoothie really is. In my time, the closest thing was probably a milk shake. Mixed some nuts and sunflower seeds and bananas and yoghurt with milk and voila: my very own energetic calorie drink. Had two large glasses. What shall I say? It didn't taste worse than anything I had tried those last weeks. Certainly better than some of those. But it felt a lot more like actual food.

One certain thing about those industrial calorie drinks is that they contain a lot of glucoses, which is very unhealthy if one has lymphedema, like I do.

The lesson learned: more ready-made means less quality control. Changing that, right now. Need to feed myself some real food again, already.

Tomorrow, I might try to make a good, fresh veggie juice for myself.

Logan51 said:

PEG food

I've been FT-dependent since 8/6/2019, with a typical diet of 4-Jevities and 1-Boost VHC/day, and doing okay, Mattie. Gained 11 lbs. on the same stuff, but pouring more down my FT each day for a couple months. Did you get the long G-tube? I got no clue what your earlier post about the clamps is about. I have one clamp. Had the same type of FT over 11 years ago for 17-months, and no problem. 16+-months for this one, and counting, without a problem. Did you get a button FT? I have a picture of mine on my Expressions page. Take a look and see if you had the same kind, please. Several people on this Forum think FTs are terrible and can cause significant issues. Well, I'm stuck with having to have one for what remains in my life, and so far so good.

Please have patience with me. I know I'm not very coherent at the moment. I'm in a state where I face challenges I never asked for, and I'm doing this alone — or almost, as far as friends or family go.

My first PEG was installed in a rush and the four little clamps that are designed to hold it in place exerted some excessive pressure on the area where they were placed. After a few days, the whole area was painfully infected and the PEG had to be removed in a rush. I opted not to have a new one for as long as possible.

As to PEG food, it's indeed very practical. I'm mainly a bit sceptical about the calorie drinks at the moment, as I kept getting weaker despite the 2100-2400 daily Kcal I ingested while I was solely living on them. I think that combining self-made "smoothies" and juices with them might be the way. Those drinks made my stomach feel empty, even when I seemingly had enough of them.

I'm still trying to find my way in all this. Like everyone here, I was never trained for these challenges, and like many, I'm probably the worst person when it comes to handling this. I jump to conclusions, am a prey to panic just as much as to false confidence, sceptical towards things I shouldn't be, and vice-versa.

The type of feeding tube I had was one that was attached from the outside, with the help of sewing thread.

motorcycleguy said:

Mat,

If you can keep taking calories by mouth, you're probably better off. Remember, during treatment, your body is working overtime to heal up. It can take more out of you than you expect!

Be patient with yourself, and understand it's a challenge for everyone - AND you'll get past it!

Hang in there...

mg

It helps a lot while a go through that last week that really feels like the end lap of a marathon, when I'm just dragging my aching body towards the finishing line.

In my hardest time, at the hospital, I told myself: this is my challenge to become a superhero. It's stupid but it works.

LASNYDER said:

Great new picture

Hey Mattie like the new picture. My wife has a saying I have been trying to live by"fake it till ya make it". Not long from today we will both be through this. Im sitting in my comfy chemo chair as I write this. LAST ONE!! Have 6 more radiations and then home to heal. I am bound and determined to figure out how to eat enough to avoid the tube and control this pain. Saw dr this morning and he is switching me to a pain patch I wear on my arm for 72 hours then replace. He also is perscribing me some steroids to try and alleviate the swelling/pain in my throat. Praying that I can eat enough to keep the weight on or at a slight loss.

Just finding this bulliten board has helped my mental state knowing I am not alone. Love my docs but at the end of the day they go home, drink a glass of wine and just go to bed. I look forward to those days soon and I will appreciate them more than I did in the past. Have a great afternoon- one more day almost behind you. 

Right now, I'm crawling through that last lap. I know, I had too little calories yesterday. I absolutely want to stay off the feeding tube, but of course, if no other option remains, I'll have one inserted. My weight is quite stable at 64-65 kg. I'm 1,85 m, so that's quite close to the minimum I should keep. I've been down to 55 kg due to a serious burnt-out in 2005 but that was quite dangerous back then. I thought today that perhaps, I should ask my doctor about a nutrition specialist.

You're really lucky to have such a witty, caring wife by your side.I'm quite used to living alone with a cat, but these days, I could really use that extra care. But okay. I'll see for that when I'm back on my feet and I've rebuilt the part of my life, that crumbled during these last years. I was actually well on my way, when cancer came crushing in.

The board helps me a lot to maintain my mental state. I have friends. I think even excellent ones, but they're not ready for such an intensity, and I can see they try to keep it normal, talking to me exclusively about electric guitars, their pets, their kids' quirkiness, and everything we usually discuss, while hardly ever asking me about my journey through that treatment. I believe they think they have to take my mind from the subject, while I actually really need to empty my bag. So, this place is a gift. Friends often want to give advice, and mine are sensible enough to know they can't, really.

At this point, I just count the days and look at projections of myself in the future, when I regained my strength, when I can eat and savour my meals. I'm aware it's going to be different forever. I'm specially concerned with teeth issues, that seem very hard to control. Still have most of mine. Very hard for me to brush them thoroughly at the moment, because the swelling in my throat makes me gag and even throw up. I hope that will get better soon after rads ended. I can't even wear the trays at the moment because I gag so easily, but I read that the critical time for teeth care is yet to come. From the lack of soreness and rash in my mouth, I deduct that, apparently, bacterial infection doesn't seem to be a worry right now. Hope it's true.

Also had a full check-up and some repairs done before radiations. Also, a teeth cleaning. I'm a bit paranoid with my teeth because they caused me a lot of trouble in the past and I had just reached a point when everything was done and fine and repaired, four implants installed. Then came this cancer with the announcement, from my doctor, that my teeth would be in great danger and might not survive the treatment or its aftermath.

For me, the first three weeks were everything else than a walk in the park. After expecting a rather minor operation, I woke up in ICU with a plastered arm, belly bandages and sick as hell. They found out it was a huge tumour as they went. Until then, everyone just thought it would be a tonsil removal and a few nodes, but no more. So the next three weeks were quite terrible. I was on intravenous food for 2 weeks, the rest on regular feeding tube, highly depressed and anxious. Life in hospital isn't my thing at all.

Of course, the big difference is that in hospital, you tend to get better, while during radiation, you get worse. Right now, I'm really exhausted. Missed an appointment this morning because I just fell asleep  again, hardly capable of starting the day. I try to drink those calorie drinks, so, at least, I can give my body a chance to gather some energy. Half my throat is swollen to the point that I gag at any occasion. Still four sessions to go. Should be a breeze, but I'm crawling to the finishing line.

On top of that, I found out yesterday that the very small changing rooms at the radiation clinic don't get cleaned after each visitor, by noticing there were feces on the seat. I called a person who works there and asked if they didn't wipe the place after each patient. They said they didn't have the resources. Great. Now, I'm even disgusted to go there. Luckily, it'll be over by monday.

ERomanO said:

Hi Mattie

...and welcome.  Sorry I'm late to the party.  It sounds like you're really in the thick of things now.  Sorry you have to deal with your clinic's disgusting lack of cleanliness. That's awful. Hopefully you're in the back stretch now and closing in on the finish line.  But the week or so after finishing is probably the worst of it all, so be prepared.  Then suddenly, the sun will [figuratively] come out and you'll be on the mend.

Best wishes to you!

Thanks for briefing me on the weeks to come, ERomanO. I'm all about being prepared and very little into false expectancies. One good thing about the weeks to come will be that I won't have to go to that filthy hospital again. Honestly, what are they thinking? I'll have the day for myself to plan how to cope with whatever will be my state of wellbeing. I can already say that a single day pause with my treatment brings me a little relief because my throat immediately start to un-swell. So, perhaps that's be a mix of getting better and being very sick, both at the same time.

In any case, there'll be an end to it and, as you say, the sun will rise again. I'm prepared, or at least I hope I am. Got a big bottle of mouthwash, though I didn't have to use any yet. Feeling tired, ears ringing at high pitch, taste completely off, but my spirits are high. Cheers and a nice weekend to you.