Crying times
Comments
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That was me. I didSuez39 said:Matt Rocks!
Matt thank you for your tips getting through this horrible disease. I really appreciate it and if I saw you I would give you a big hug. Here's something that should make you smile. Two days ago I saw the RN for my feeding tube. How to clean it etc.. She was looking on the computer at my chart and said Melissa the nutritionist said you eat Bagels with what you have? I said uh yes that would b right. Lol She said how do you do it? Told her I love bagels n I chew them very fine get some chocolate milk n wash those babies down. Ha So now the nurses n docs laugh n call me the bagel girl. They are amazed cause I hardly have any room for food to go down. It hurts when I swallow them but tastes sooo good. Miss my meataballs though. (I'm a pizanno). Well Matt i'm going to put your tips in my big huge medical notebook. Your da best! Hey wanted to ask you someone on here said they went through chemo n took marijuana cream n patches and they did'not throw up Once!! I'm no druggie but hey if that's true I want some. Anything to handle nausea. Thx again for keeping in touch.
That was me. I did recreational regulated THC (marijuana) in the form of creams and patches mostly. A few edibles when I could swallow. They are illegal in my state so I got them out of state. I didn't want to do opioids and risk addiction and all the side effects (with terrible constipation being one of them). I knew I'd be miserable enough. The THC took away all of my anxiety, restored my urge to want to eat and made it so I could relax and sleep. 5mg doses is all I needed a couple of times a day. I never took any other meds (other than some sips of hydrocodone when a terrible cough developed for a week or so - that stuff stops a cough within seconds). I did have some anti-nausea in a cream I could put on my wrists, but I found the THC was a better option for me. It also allowed me to get through treatment without a PEG tube or a chemo port. I'm 6-months out from treatment and I'm back to 100% (minus some saliva).
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Dean54
Thank you for letting me know about the time it takes for treatments.I hope everything works out. Since you could swallow then you did'not have a feeding tube put in? I actually took a chance and had a piece of thin pizza but did'not stay in me long. Took small bites but at least I could taste it. Dean you have been a big help to me with my concerns and I appreciate it! Thinking of telling my rad techs that if they can get through treatments I will make them a pot of sauce and even throw on some sausage. Badda boom! Lol All kidding aside can't wait until i'm back to my normal self without being scared or anxious. I sympathize for anyone who has to go through this grueling treatment. Takes Alot of will power and courage. I'm glad you made it through your treatments and are doing good now. Your tips are valuable lessons for a newbie like me.
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I am hoping for a Suezerrific Treatment Plan
Suez39,
Hopefully, once you get rolling you will just manage your way through. Most of us had some issues. My big 3 lifesavers were Lorazepam (Ativan, 2 will make you drowsy), Magic Mouth Wash and Silver Sulfadiazine cream for neck burn.
I never liked the mask, but the Lorazepam 1/2 hour before rads was sweet. For mouth, tongue and throat discomfort I loved my magic mouth wash, I sipped, swished and swallowed 6 bottles. Finally, the cream for neck burn; for me the neck burn was my worst pain, but the cream solved the problem.
Probably no other H&N member would choose these 3 items, but they made my life survivable. You will encounter issues and you will solve issues and you will finish strong.
Remember, to drink lots of water and swallow often. This is the best advice I got from this forum (hands down). You want to stay hydrated and you want to maintain your ability to swallow. Believe it or not, forgetting how to swallow is real. Get plenty of nutrition!!! This can take every waking hour of every day at some time past week 3 of treatments. Eat, chew, swallow, blend, drink or PEG your calories. If you do these two things you will be golden.
Now I don’t know if you should get any pain meds from Dean, but I think your humor will be an asset.
Good luck,
Matt
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Your so welcome Suez39
And yes I did have a feeding tube but thankfully, never needed it. The Rad. kept telling I would and even pushed me somewhat to use it 3/4 of the way thru but I was determined not to if I could help it. Anything I or any of us on this forum can do to help you, yes we will be there for you.
Just remember that it takes a while, keep a postive attitude, and get any exercise you can stand to do. And drink lots of nutrition!
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Supplies?
I need to shop this week and stock up on suppliees. I've heard many people mention "Magic Mouthwash". Can you buy it in the grocery store? I looked around and could'not find it. Also I bought Carnation breakfast essentials. Only 130 Cal per serving. Does ensure taste good? I can swallow alittle still but having difficulty.Looked up liquid hope on Amazon and they don't have it. Tumor getting bigger I think. Thank you Dean and everyone for being there for me. Just want to get going on these treatments.
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Some supply answersSuez39 said:Supplies?
I need to shop this week and stock up on suppliees. I've heard many people mention "Magic Mouthwash". Can you buy it in the grocery store? I looked around and could'not find it. Also I bought Carnation breakfast essentials. Only 130 Cal per serving. Does ensure taste good? I can swallow alittle still but having difficulty.Looked up liquid hope on Amazon and they don't have it. Tumor getting bigger I think. Thank you Dean and everyone for being there for me. Just want to get going on these treatments.
Hi Suez39 -
You will need a prescription for the "magic" mouthwash. A pharmacist has to make it up from 3 to 4 ingredients. Mine was prescribed by my radiologist.
The Carnation Breakfast that most refer to in this forum is VHC (very high calorie). It is different than the Essentials. It's Carnation Breakfast VHC. Boost also has a VHC.
Some people like Ensure and/or Boost, others hate it. If you can't get any free from the hospital/clinic to try, I would start off buying the vanilla flavor of Ensure Plus (it has more calories than the regular Ensure). It does come in 5 flavors.
You might want to look up some recipes to make some smoothies. I did not make any but many on this forum have.
Thinking of you.
Jan
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Radiation Burn treatment
Hi Suez,
Something else I thought of. My cancer center recommeded Calendula cream (most drug stores carry it Boiron Brand) slathered on every 4 waking hours front and back, and then Aquaphor ointment at night for treating the radiation burns. I had great success with it. I got pretty pink and very sensitive, but never had open sores and my skin returned to normal within 2-3 weeks after treatment. I also cut the necks out of soft cotton t shirts to wear daily or the spahgetti string cotton camisole shirts, especially by the third week. (The radiation techs did not make me change into a gown as the I would just pull my tshirt past my shoulders for them. And I bought a soft strapless bra to wear as my bra straps would graze the tendor areas around my collarbone and it was intolerable. Hope this helps!
Nancy
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VHC
Hi again Suez39 -
Don't ever hestitate to post questions to the forum !!!!
I'm not sure that the Carnation VHC is still being made. I looked on line and just saw it available in a very few places. I never bought any. HOWEVER, there is a Boost VHC and it looks like it would be easier to find. Not sure you'll find it in a store. It's a lot of calories for a small amount of intake. 530 cals per 8 oz.
Does the clinic/hosptial you're going to have a dietitian you can meet with ? The one at the hospital I went to contacted me and gave me a few free samples as well as some coupons and printed suggested recipes. It was nice to try some things before buying it. The radiologist always had an Ensure that you could have each day.
Sorry I couldn't help more
.Jan
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Hi Nancyuaphor cream in the drug store too?
Happy to hear from you again. Can you buy the aquaphor in the drug store too? My techs will probably make me wear the gown but we'll see. I had an underwrite bra on for my mask fitting and scan so they made me take it off. Good tip on the strapless soft bra. Thx! I also looked up the Liquid Hope on the site you gave but on Amazon they did'not have any. When I see my nutrionist I will ask her. Nancy you have given me helpful tips and this pizanno appreciates it! Lol Did you take the ativan before each of your treatments? I hope I can get by some of the treatments without it. And your comments about what to do or use always helps! Thx!!
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Supplies
Thx Jan for your response. I will see if my dietician has maybe some samples for me. I saw her once n she just gave me papers on what foods I could eat which didn't help since it's difficult to swallow now. Peg tube supposed to be done next week. Ugh...Hope they explain real good how to use it. Kinda nervous about it.
Thx again
Suez
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Suez,
Suez,
Everyone in this thread has given you some excellent advice, so I am not sure I have too much more to add.
One thing I will say is a lot of this treatment is a mind game - so you have to get your head in the game to survive it. At the worst of treatment, which never got above a 7-8 out of 10, I would imagine how wonderful the summer was going to be, how great a nice relaxing vacation would feel, or watch cooking videos on YouTube. I had a lot to cry for, which I did quite a bit. You have to prepare yourself that it is going to get worse before it gets better - knowing that it WILL get better. They don’t do these treatments if they didn’t think we’d survive and potentially be cured.
For me, my body became something that just needed to be pushed through the motions - drink the shake because its medicine, drink the water because its medicine, take the chemo because its medicine, take the rad dive because its medicine. It gets very dissociative after a while, and I will admit to feeling like I was floating outside of my body at times. This went away very very quickly after treatment was done, and I am happy to report they couldn’t wipe my smile off my face permanently.
Sending good thoughts,
John
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My take on the creams
They recommeded them to me also but since I couldn't find them locally I thought I would just try the A&D ointment first. I guess I'm one of the lucky ones but I didn't even need that as I had practially no skin problems from the rad. and maybe used the ointment twice. Hope you are as lucky.
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Peg TubeSuez39 said:Supplies
Thx Jan for your response. I will see if my dietician has maybe some samples for me. I saw her once n she just gave me papers on what foods I could eat which didn't help since it's difficult to swallow now. Peg tube supposed to be done next week. Ugh...Hope they explain real good how to use it. Kinda nervous about it.
Thx again
Suez
I was VERY scared about getting and using my peg tube. Most people have NO trouble at all. I didn't have any problem and I've had two now. I'm still using one
. The insertion site will probably hurt a bit for a few days after you get it. It's VERY easy to use.You can buy Aquaphor at most drugstores. It's greasy ........ you'll want to protect your clothes. I know many have problems with burns from the radiation but I had very little. My skin turned a tiny bit pink and that was all. Even when that happened, the radiologist and nurse got on me about using the Aquaphor.
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Peg Tube
I speak as a caregiver so I don't have the experience and wisdom of the wonderful members of this board. But I can say that a peg tube sounds so frightening and in fact it is just the opposite. Insertion will be so much easier than whatever you are anticipating. Some folks never even need to rely on their peg. But if you do (and with a large tumor you may) you will be so grateful you have it for hydration, calories and pain meds. It is also so easy to care for. My only real advice would be to follow the advice so many others have given. Sip water or whatever you can get down throughout the day. This will be a challenge at times but it is crucial in order to retain your ability to swallow. You are prepared. You can do this!! My thoughts and prayers will be with you.
Patricia
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Peg tube
Just a quick note. Saw two doctors today. They were telling me what they do when they put peg tube in. First you have to drink barium. Awful white styff. But the kicker was they told me they stick a long tube in your nostril all the way down past your chest and next to the stomach area. They then put air in it for some reason. Yikes!! That made me sick thinking about it. He said they sedate you but your not sleeping. Ugh. Now i'm more scared than ever. I know you guys see me post things and probably say she's a baby. Boo-hoo!!
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Transportation almost fixed!!
Well things moving along. Asked nurse to call in prescription for Ativan. Because I start rads on Monday. Finally getting connected with transportation companies and churches. Churches have free rides n organizations charge reasonable fees. I'm hoping I can drive myself the 2nd week and i'm use to the rads procedure every day. Taking it one day at a time. Wierd though doctor said no order was given for me to have a port.
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put you pic ona computer andSuez39 said:Pic
Wish I could put my pic on here. I have a smart phone with a nice camera but when I try to upload pic it says file to large. Ugh.. New technology throws me! Lol
put you pic ona computer and downsize in the paint application
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Feeding Tube
Hello Suez39, I too was freightened by the prospect of the tube insertion. You may have had this done already, but for those of you who have this looming on the horizon, it really is not that bad. They do sedate you and all you will feel is a slight tug. For the first few days it will be painful at the incision site, but rely on your pain meds for that. This will ultimately be what gives you a leg up when you are not able to swallow enough liquid to remain hydrated. I did resent the tube and all of the concurrent maintenance, until I finally used it in earnest. This whole treatment and cancer world is totally removed from our usual self possessed way of living. You become so dependent and, as JAL23 says you do become removed from yourself, become dissociative. I know I got really good at going into my head during my rad treatments. Then it was all over and now I am 15 months post and feeling great. As my brother said to me when I was fiirst diagnosed with HPV related tonsil cancer and being scheduled for big treatments "You've got to batten down the hatches." You will get through it. You've got this.
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