Crying times
All this cancer stuff finally got to me. I cried a few times cause of trying to handle upcoming feeding tube rads and chemo. Will miss working badly as its good therapy to get ur mind off ur health issues. Ironically I help elderly people with thier heating bills so they don't get shut off which of couse is dangerous in cold weather. I love helping people and now sadly I need help. Hard to get use to that aspect. I get more kindness n compassion from friends n strangers than I do my family. Sad but I deal with it. I really hope and pray that God helps All of us heal from this horrible disease. I believe in prayer cause God can work miracles. Had cancer b4 and I survived. Now have it again and I hope i'm Lucky once more. Still a scared little rabbit cause my peg tube and treatments coming Very soon. Ugh...
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You can do it!
It made me cry a bit before treatment, saying goodbye to my old self. I am nearing 1 year post treatment. Things are getting better at a snails pace, but Ill take it!!!
I had the peg tube for 5 months and it was a life saver, especially for hydration. I am hoping that you have some kind of support system as speaking for myself, it was my lifeline. What is your diagnosis? Are you HPV+?
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I'm not a cryer but I sure
I'm not a cryer but I sure got depressed when then they put in that PEG tube and had it for almost 6 months but luckily, never had to use it. With the help of all the pain meds I pretty much brezzed thru the rad. altho the chemo was rather rough but managable.
The side effects from the rad. afterwards are probably the hardest part of the whole ordeal even tho they are not painful, just annoying. You can get thru this Suez39 like the rest of us have and please post your thoughts and concerns on here and we will try to help the best we can as some of the fine people on here helped me thru my journey.
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Checking in
Diiagnosis is HPV+. SCC base of tongue tonsils lymph nodes. Tumor on base of my tongue is protruding in my throat almost the whole width. Quite large. Saw it on my MRI pic. I an only breathe eat n swallow by a Very Narrow space on my right side of my throat. Can't swallow normal cause liquid comes back up in my mouth. No appetite eat force myself to eat 1x a day cause I choke. Sucks to b me! Lol Since I had larynx cancer b4 body not what it use to be. Only one person for my support system is my b/f. He is my rock. Said he will fight for me. I think of him as my savior throwing a rope out to me to pull me back in. Love him alot. But don't want to put this on him. He works 50-60 weeks n gets physically n emotionally tired. But if I had two wishes one would b that I could have at least a couple of people to help me. The other would b to live at least alittle longer cause I want to accomplish things. Nancy I am so happy that you made it and beat cancer. Not easy at all!!! I'm only working few more days cause feel my body failing me. I see everyone eating thier lunch n makes me feel bad cause I can't. Especially y went they eat thier spaghetti n meataballs! Nota good! Lol I'm a pizanno. I use to have a great sense of humor n it comes back every now n then. Well please write back. Your encouragement helps me.
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Mask?
Hey Nancy did Dean did you guys have to wear the spiderman mask? Lol You know the one for rad treatment. I drove the techs n doc nuts cause I could'nt breathe in that thing!! When I go for my 1st treatment they will probably zap me fast to get me out of there. Lol Don't want a wimp around.
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Dean
Thx for your kind words of encouragement. You as others on here do give good advice n tips on what to do for nutrition managing side effects etc.. I think I need some meds to get trough some of my rads. They want to prescribe ativan but that's just to calm you down. I want something to make me drowsy. Dean what pain meds did you take?
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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.
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Hi Nancy!!
Hi Nancy!
Thx so much for checking in again. I'm happy you came through this horrible time and are cranking up ur muscles! Lol I am trying to get ahold of my insurance company to see if they will pay for a home health aide. I just need someone to watch me clean n use my peg tube if needed and to make sure when I get super sick that they will help me do what I'm supposed too. Drink water n stay nourished. If insurance company won't pay i'm kinda stuck. But some clients that come to my job said they would help. But thier strangers to me and I feel kinda funny asking them for a favor.
Hey Nancy the formula Liquid Hope does a doctor prescribe it or is I over the counter? Does it taste good? I'm going to write down your tips too. I'm so glad I was about 30-40 lbs overweight. Cause now I have been losing and still will be ok. Have that weight to help me. My normal weight is around 135-140. Only lost 10 lbs so far but when I go to work i'm losing my pants! They fall down. Lol Good thing thier is'no alot of dirty men around. I'm so glad my sense of humor trying to come back. I'm very happy to have you and others on here trying lend a helping hand. You are all such amazing caring people. Well peg tube next week and start my treatments week after. Ughh. The dreaded journey. I'm still that scared little rabbit!!Take care and write back. I enjoy hearing from you
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it can be overwhelming at first
I remember the 'rush' feeling when my tumor was discovered and I was told that it was likely malignant. It is the only time in my life (64 years) that time seemed to stand still.
I was staged at IVa, the primary tumor was 30mm and the largest of the adjacent lymph nodes was 60mm. My medical oncologist informed me that this level of disease had only a 30% 5 year survival rate (I'm at 6 years since diagnosis).
The first weekend my wife and I grieved (for lack of a better descriptive word) about having cancer but then decided that "it is what it is" and that spending time and wasting effort on worrying would not have any positive impact. I decided that I was going to live. I accepted that I would feel sick, have pain and what have you, but I made the conscious decision that I was going to do all I could to survive and be there for my wife and daughters.
There will be challenges. My treatment plan had 3 phases. The first phase would be induction chemo, 3 sessions, each to be 5 days as an in-patient on continious high dose chemo (1 day of taxotere, one day of cisplatin and 3 days of 5FU) I can honestly say that I've never felt so sick in all of my life. That first session radically reduced the palpable size of the lymph nodes, but it also put me into renal compromise so the decision was made to abandon the next two sessions and move into concurrent rads/chemo.
I had extensive dental work done, had one tooth removed and a bunch more filled, I got a feeding tube and while the description of how they do it is intimidating, the actuallity was not all that bad at all. Using it had a learning curve, the most practical advice I can give is if you have the clamp open and need to cough or sneeze, close the clamp before you do, otherwise everything will come flying out of the tube. I dealt with the 20 or so inches of tube by using a product called 'Spandage", an mesh sleeve that I could slip around my middle and it kept the tube in place without tape.
The mask was a bit challenging, when they mold it, make sure that they relieve the pressure on your nose and eyes, it will save discomfort down the road.
I did all 33 rads without any anti anxiety medications and spent the time doing math. I counted the number of machine moves and stops, the number of seconds for each and then would calculate mentally the percentage complete for each move, each exposure, the summary for each session and the remaining percentages. It helped tremendously.
Recovery was long, I had my last rad July 5 and was able to return to work in early September but needed to take the occassional nap.
the last phase of treatment was surgery, the PET scan post rads was described as very good, and the initial decision was to just wait and watch but the tumor board elected to pursue surgery. I had a selective neck dissection in October and that sounds scary as well but was not all that difficult to go through.
The scary part was that 5 months later the next PET showed more issues so a second surgery was set up and was going to be a modified radical, testing of nodes and tissue harvested at the start of surgery showed no disease so no modified radical.
The most depressing part of the entire experience was during rads, saliva had disappeared and my sense of taste was amost gone and my medical oncologist said that the condition was likely permanent. Talk about devastating. Talking with my radiation oncologist about it, I was told it would come back, it might be reduced but it would.
Taste recovered over a year, one of the surprising things was that I couldn't tolerate really cold food items like ice cream. that took over 2 years to come back! Saliva is around 70% of what it was so I usually need to have small sips of water with most of what I eat, but it beats starving....
it's challenging but life is worth living!
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Overwhelming for sure
Thx for sharing yensid683. You really went through a horrible ordeal but i'm glad things got better for you. I start my treatments at the beginning of April and not looking forward to it. Still have alot of anxiety and fear of getting mask on going through machine chemo etc. I give you immense credit going through rads wirh no meds. Even though you found math to occupy yourself it's still Very difficult. I know it's a Long Rough journey but God helps us through it. Life is definitely worth living!!
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Suez39 we are here for you
They gave me bottle after bottle of liquid hydrococodone and truthfully about the only time I really needed it was after the tonsilectomy and maybe a little after the wisdom tooth extraction but I took a "chug" just about everyday whether I needed it or not and I pretty much just breezed thru the 33 rad. and 3 chemos. Best anti-depressant there is.
Big caveat tho, when it came time to get off the stuff, it's wasn't all that easy. Felt pretty crappy for a few weeks but all in all it helped me so much I'd do it again in a heart-beat.
Also, the mask isn't near as bad as I thought when they first made it. I just kept telling myself that it is either this, or no cure.
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Pain meds
Thx Dean for your response. My doc will only prescribe Ativan which does'not sound that strong to me. I need something to make me drowsy to get through the rads. I would rather have the machine that rotates around you but I have the one where you go in it. Like the round donut one. You said earlier when they made the mask you left feeling depressed n thought you gonna die. Mask super unco.foryable. They can only alter it so mucj. But somehow I have to find strength to get use to it. Ugh....
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Hi Sue!
Hi Sue!
I think all of us who had a radiation plan,which is the majority got a mask fitted for the radiation. My doc prescribed Lorazepam 1mg. I would take it 30 minutes before my treatment. Also, I did a playlist of 5-6 favorite songs which I could sing along to inside my head during the treatment, and the tech would hook up my phone which had the playlist to a speaker. With the drug, I was always very relaxed.
The very biggest issue is going to be hydration and nutrition. Like Matt says, get the smoothies/peg food down any way you can. Your swallowing muscles can lose their ability in very short order, so be sure to keep swallowing even tiny sips of water. Hopefully you are one of the lucky ones who can take their calories by mouth. I was not. By week two, I was 100% dependant on my feeding tube. Luckily I had a fantastic formula called "Liquid Hope". It is an incredible blend of all vegetarian proteins and vitamins/minerals..perfectly balanced.My Kaiser health insurance covered it. I would check and see if your insurance will cover it...great stuff. My kids made sure I took a few sips of water every few hours to keep my swallowing muscles going. I hope you can find someone who can be with you during the hours that your boyfriend cant. And keep a journal with all of the docs, pharmacists, specialists names and numbers and an ongoing record of all medications, times taken etc. I am always here to help you having been down this very road. HPV is very curable. This treatment is a ****, and the recovery is so slow at times that you dont even see it happening. I am now a year out. I got down to 89 lbs and looked like a typical cancer patient...skeletal. Now, I am back up to my normal 103 lbs, going to the gym and weight training, and back to eating most everything. People I meet would never know I was ever sick. And best of all, I am cancer free. Life is so good!!!
I am excited to help you through this. I know you can do it!!!
Nancy
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Hi Sue,
Hi Sue,
The "Liquid Hope" is a nutritionally complete, plant based, organic feeding tube formula. Here is the link to read about it www.functionalformularies.com/liquid-hope-information.html
I credit this amazing formula as part of what kept me going through treatment.
I am hoping that you will be assigned a Nutritionist. It is pretty standard with head and neck treatments. My nutritionist recommended the Liquid Hope, and told me that Kaiser Health Plan had just recently approved it. I saw my nutritionist every day of my radiation. She checked my weight and was full of tips for staying hydrated and fed. It would have been very hard without her. I am sure you can call your insurance provider and ask them about the Liquid Hope as well. Are you going to be treated at a Cancer Center???
Thinking of you..... Nancy
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Actually the mask wasn't that bad
But I think it just hit home of what was going to happen for the next few months.The rad. treatments don't last very long at a time and when you first start and think OMG, I have this many to go....but it goes pretty fast.
Like Nancy said, the Liquid Hope is good stuff and I'm still drinking it even tho I never used it in the tube.
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Hi Nancy and Dean
Thank you both for your comments. IThanks also for The Liquid Hope website. Will definitely check into it. I was diagnosed at the beginning of Feb and hospital dragging thier feet. I want to get this started as my throat feels like it's closing more on me. Next week supposed to get feeding tube and the week after start treatments. I'm tring to figure out if I need meds go first few sessions to get me through. Can you guys tell me is the first rad alittle longer or are they all the same? How long do they last? I have to do 35 so I will think the same. OMG this will be a long haul but you have to deal with it. And I thought I heard someone say on here that rads bounce off your metal fillings and cause mouth sores. They said they used cotton in thier mouth in between the fillings n cheeks and they didn't get sores. Ugh.... so much to learn to prevent panic on table managing side effects getting enough nutrition etc... Hopefully when I finally start treatments I won't be so scared. You guys have been the best!!
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Suez39
I do think the first one lasts a little bit longer but they are really not that bad maybe 15 minutes and I hadn't heard that about the fillings. I have plenty and didn't have any of the problems you mentioned. I had very little inflammation in my mouth from the rad. and could swallow thru the whole 33 treatments.
Just try and relax when they start, close your eyes and remind yourself that you are doing this to get well.
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