Hard to shake the feeling

Suez39

I have SCC BOT and Tonsil HPV+ cancer. I did post on here before and received many great responses which I am thankful for. My first rad treatment is scheduled this Monday at 11:30 am. Also seeing head chemo nurse before at 11:00 am. Problem is I can't seem to shake the anxiety and fear and sense of despair about going through this. Not having support from family or friends makes it tougher. Feel very Alone. I know it might seem to some like i'm whinning or have self pity which is Not the case. I have always been a tough minded person with the attitude that I can do or conquer most obstacles life throws at me. But treatments coupled with peg tube placement next wednesday has got me feeling at an all time low. So not like me!! Going to try the magic pills Ativan for maybe first few days or week. Feel kinda ashamed that I have to do that. I think if I had at least ONE person to be my side through this tough first week it would make all the difference in the world. They would be my lifeline. But it is what it is. Sorry about all the rambling. Hope I did'nt put you to sleep! Those of you that are post TX have a burger shake n fries and enjoy!! I want to survive and I do understand that it's a long tough journey that you have to fight like h*** for. Thanks for listening. 

Darkdancer333

Make sure your mask has eyes

Make sure your mask has eyes opened and mouth refuse to do it until they fix the mask,. When you get the treatment you feel nothing. 4-5 minute scan and then you come back out for 4 minutes or so and go back in for 3 minutes rad. It's over pretty quick. They key is the mask, for me anyways. I did my second chemo and outside a little constipation nothing major. So far this carbo/taxo seems good.   

I didnt do peg so i know im going to have to force myself. I didn't do a port and she only missed a vein one time.. Rad treatment now i like lol I flirt with all the young female techinicians. 

Something us old guys have a tendency to do. 

Does your treatment center have a support group.. look into this it may help... I have 27 years sobriety so I do the whole AA thing.. It taught me to keep one day at a time.. 

Serenity prayer has always done well for me.

Keep posting here. We are all in this together

 

 

armana

Support Group

I am so sorry that you have no support from friends and family. I live in the Dallas Fort worth area and there are several support groups for cancer patients, perhaps you shuold look into

what is available near you. You will get throuh this with or without support, remeber that you are your own advocate and need to stay strong.

 

Arman

CivilMatt

Put those feelings into positive action

Suez39,

This cancer news is hard for (almost) anybody to digest.  Even today, I still cannot believe I had cancer, but EVERYTHING points to “I did”.  With my personal doubts I knew I truly had cancer and I choose to do the best I could to help myself be successful.  My basic formula was hydration and nutrition.  Taking care of those two items helps all.

I never had taken any anxiety pills or antidepressants or anything related to mental health and wellbeing until I discovered the awful feelings which came over me getting a PET, a MRI or wearing that godforsaken dreaded mask.  That one simple Lorazepam tablet was a blessing and made close encounters of the scan and mask kind doable, doable, doable.  I mean this from the kindest most heartfelt part of my being.  Funny side note, I always thought I was totally my normal self while on Lorazepam.  I read all the time about H&N members who didn’t give a hoot about the mask and I suppose they could even wear it while driving.  I was not one of those lucky members, maybe you will be.  Take the meds you need and put this problem behind you.

Also, don’t think you can tough out nausea, pain, burns, etc.  Keep your team informed and be prepared.

You cannot continue to beat yourself up.  This has happened to you and your best avenue for a favorable treatment is to do what is best to help your body get through the side effects which will come.  Most H&N members get some of the side effects, but not all of them. 

You can do this.

Matt

Frances_S

Hi Suze39

Hi Suze39,

As a caretaker for my husband, I can honestly say the CSN network helped my husband and I get through this. There are many wonderful people here on this site that will give you good advice from sharing their personal experiences. Although, my husband would not go on the site for fear of what he may read, I would often tell him about the experience of other H&N cancer patients and survivors. It would help him get through his day.

I don’t think anyone here would ever feel that you are whining or over reacting. What you are going through is perfectly normal in your situation. I am certain that anyone that has received any type of cancer diagnosis would be filled with fear or denial. In my husband’s case it was both. I believe knowing what you are up against will help you move forward, it will also help you feel less alone going on this journey. It is better than going into this treatment blind.

Most cancer centers do have support groups, and some will even have transportation services they can provide. You should consider looking into this as soon as possible. If you are not at a cancer center there will still be support groups in your area.

Some members here will tell you they had to be on anti-anxiety medication, anti-nausea, pain meds, ect., to get through this. My husband was on all of those. Today he is 3 ½ months post treatment.

It’s a difficult road to go down. You will need support along the way and if you have to come here for that, please do not hesitate.

Wishing you all the best! Sending hugs and prayers your way.

Frances

whoisjohngalt

Suze39

I am 2 weeks post surgery for removal of lymph nodes and exploratory surgery to try and determine source of HPV+ (unsuccessful), and will begin chemoradiation in a few weeks. I too, am very anxious, especially after reading about the hardships most suffer from during the treatment. I have solid family support but think they are not fully aware of the toll this will also take on them. My wife admonishes me not to spend so much time reading of others experiences because it will get me down. I respond that I need to go into this with the proper expectations, and to be prepared to slay the dragon. I appreciate the input of others who have gone before me, and look forward to the time that I might provide support to others, of my experiences. I will think of you, and pray for you during this time. 

Dmac52

Tight Feeling/Wierd feeling with the weather

 Neck dissection almost 2 years ago.  I still, occasionally have a stick neck and a wierd sensation in my neck, especially with bad weather.  Is this normal?

Twostepr

Second time around.

Hi Suez,

Actually, I have been through the radiation and chemo treatment twice now. First time about ten years ago at the age of 54, and again last year at the age of 64. Like you, I had absolutely no support from anyone either time. The first time was less than two months after my wife died. I drove myself to treatments an hour and a half away, and I drove myself home after it was all done. I rang the bell both times in an empty room by myself. There is no magic that is going to make it all easy. You're right, having somebody to at least ride along might make it a little easier but to be honest, the treatments are not so bad. You will work yourself into a frenzy if you start to worry about it before you even start. It's all of the healing you have to do after the treatments are over and I'll tell you now, it affects everybody differently. Everybody. Just remind yourself that this is necessary. Find the strength within you to step up and take care of business. It makes it much easier looking back, I think, to know that you did do what had to be done even if you did have to do it alone. As my Grandad used to say, "Just put your head down and push on through it".

Wishing you the best. Sending you strength.

whoisjohngalt

twostepr

I am so impressed by your strength!

Suez39

Thank you everyone!

Thank you for all your comments and input. I will look into a support group in my area and also have my mask altered to make sure the eyes and mouth are open so I can feel less suffocated. I have read about those H&N members also who don't see the mask as bothersome but I too am not that lucky. And the peg tube I know will come in handy as I am having difficulty swallowing now. Did any of you have the peg and find it easy to take care and use? And twostepr I admire your strength & determination to go through this battle Alone twice! You and all the other H&N members here inspire me dig down deep and find my strength to battle this. I will have to experiment with the nutrition drinks to find out which ones I can tolerate to get in me. I can manage alittle soup soft potatoes scrambled eggs etc now. But I know if a week or two that will change. I will be in touch to let you guys know how I made out. I feel very privileged to have found this site where I consider the people here my mentors and friends to help guide me. Hugs and best wishes!

Susan

Twostepr

Just sayin'

It's not really strength. I'm certainly no stronger than anyone else on here. I was scared, worried, afraid. Just like everyone else. But it's not like any of us have a choice. We can't just call a timeout and tell the coach that we just don't like this game and want to change the rules. We face what we have to. And it's different for every one of us. But like I said, none of us chose to have cancer. Of any kind. But we all do in one way or another. Everybody says "Oh you're so strong!" No I'm not. I just refuse to quit. I take one more step. I take one more breath. And as long as I can do those things, I win. I have learned one thing in life. That no matter how bad or how good or how indifferent a thing may be, if it has a beginning, it has an end. And that applies to everything I know about living. Everything. It's just a matter of being able to focus on the other end of things rather than what you face right now. Yes, it's hard. Yes, it hurts. And yes, it will probably still hurt some tomorrow. But it won't hurt forever. And tomorrow is another day. As long as my eyes keep opening, I will keep going. What other choice do we have? 

 

Twostepr

Suez39

Just thought that I would toss out there that I "eat" Isosource 1.5 nutrition drinks and Prostat protein supplement. It's what I live on as far as nutrition. Try to stay away from the "store" brands like Ensure and those kinds. They will keep you in a fight with your stomach. Ask your Doctor about a talk with a Nutritionist. They can actually prescribe your food. In my case, my insurance has started covering the cost so that helps some.

Hang in there Susan! We'll talk about this mess and laugh about it while we cry one day.

Darkdancer333

Twostepr said:

Just sayin'

It's not really strength. I'm certainly no stronger than anyone else on here. I was scared, worried, afraid. Just like everyone else. But it's not like any of us have a choice. We can't just call a timeout and tell the coach that we just don't like this game and want to change the rules. We face what we have to. And it's different for every one of us. But like I said, none of us chose to have cancer. Of any kind. But we all do in one way or another. Everybody says "Oh you're so strong!" No I'm not. I just refuse to quit. I take one more step. I take one more breath. And as long as I can do those things, I win. I have learned one thing in life. That no matter how bad or how good or how indifferent a thing may be, if it has a beginning, it has an end. And that applies to everything I know about living. Everything. It's just a matter of being able to focus on the other end of things rather than what you face right now. Yes, it's hard. Yes, it hurts. And yes, it will probably still hurt some tomorrow. But it won't hurt forever. And tomorrow is another day. As long as my eyes keep opening, I will keep going. What other choice do we have? 

 

I love that line refuse to

I love that line refuse to quit

Everyone at works likes my positive attitude I tell them I am a stubborn portagee thsats not going anywhere. ill have to add refuse to quit

nancytc

Hi Suez,

Hi Suez,

I am days from my one year mark from the end of treatments! YAY! I am glad you are getting your Lorazepam if your anxiety is getting the best of you. I wish i could be there to help you through this, but I am here for you.

The Peg is easy to use and you just want to make sure that you are never laying flat when you are using it. I had a gravity bag for night hydration and daytime feedings and it is very important that you are always elevated. There is a real danger that your food can come up your esophagus and into your lungs with aspiration risk and possible pneumonia, so just never feed laying flat. I used about 3-4 pillows to prop myself up when I slept, and I found it VERY useful to have one of those U shaped travel pillows they make for napping sitting up. Especially when the mucous episodes started in week 3-4. You may never get the mucous, so dont worry about it now. But get the pillow, I promise that you will find it helpful! Every day down now, is another day closer to the finish line. Keep your eye on the prize of finishing! You definitely have the sass, focus, and passion to get thorough this. Others have done it solo, and so will you. If I hadn't had my kids taking care of me, I would have reached out to this network more. You are on my mind, and I am praying for you constantly. Your friend, Nancy

 

Dean54

Like the others have said

Suez, you can do this and believe me, I went thru every emotion that you are going thru. The day they fitted me for the mask I was so depressed I felt like giving up.I'm usually not one to show my emotions but I'm sure everyone I encountered that day knew exactly how I felt by the look on my face. Scared and angry.

I decided to start an anti-D and between it and the pain meds I breezed thru the treatments, exercised almost daily, and everybody commented on how easy it was for me to get thru everything. Not that it was but the meds sure made everything tolerable.

Don't ever feel like you can't come here and write no matter how you feel. We are your friends and we understand everything you are going thru and so wish you didn't have to go it alone. Best wishes dear for starting this week.

donfoo

Your new family

Hi,

So glad you found the best place to be when battling oral cancer. All of us here have some experience with the disease, as caretakers, loved one, or the patient. We aren't medical professionals but have plenty of real world experience to help you navigate your journey through this trip. We used to use the metaphor of the bus and taking a trip, bump and all. You are at the checkpoint where the road is going to get rough, no sugarcoating it. Most get a week or two of a "free" ride, then you'll be facing some rough times. Please ask anything, reach out, share the fright and uncertainties, we are all family and want to help as much as you want. 

AnotherSurvivor

csn.cancer.org

Back on the home page, on the left under the cancer.org heading is support programs.  Even if your location isn't listed your providers might know more resources.  Locally here on the burbs of Denver there is a variety of support orgs.  Your nurses, chemo, rad, or hydro will be your best resource.  They know this stuff, but ya gotta ask.

Suez39

Great comments everyone

I did read all the threads and I know you understand the emotions i'm going through because of going through it yourselves. Please remember me in your prayers tonight as tomorrow the treatments will begin. My radiation nurse said my first treatment will take alittle longer. Probably 30 minutes. At least 20 min on the table. Does'not sound terrible but the first time is always tough since you don't know what to expect and also that dreaded mask. I will take 1 Lorazepam an hr before appt at 11:30 am. Between the American Cancer Society and a couple of my friends my transportation all set for next week. But my goal is to drive myself the weeks after. We'll see how it goes. Some people might disagree with me but it DOES take alot of courage and determination to go through this whole ordeal. One step at a time day by day. All of you here have Proved that you can beat cancer wirh God and the doctors working very hard on each unique case that we have. Thx Dean for your kind words and support. And Nancy great tip for the travel U pillow for peg. Where do you get them? And also thx for the tip about sleeping elevated. Did'nt know stomach contents could back up. Geesh! My nurses way behind on telling me these things. And twostepr you sound like you want to "shake me up" saying "No more worrying or fear get out and do it ( maybe in a scolding kind of way.) Or maybe I misunderstood.And all the other great H&N members who posted here I always welcome and VALUE your opinions and outlook regarding this terrible disease. You are my friends and wish I could meet all of you. Will try to post tomorrow afternoon about my wonderful first session of rads with my spiderman mask. 

SuzJ

Suez

I was the exact place you are, a year ago, us Sue's have to stick together!

 

Yell, scream, cry - we are all here, I couldn't have done it withought this fantastic team on these boards - there is nothing you can say, that at least one of us, hasn't already done. We can help.

Twostepr

Not scolding

Hi Sue,

Sorry, didn't mean to sound mean. I was just trying to make the point that sometimes you just have to do what has to be done. Sometimes, you just don't have a choice other than to take the medicine, let it hurt until it heals, and keep trying. That's all.

Sorry if I hurt your feelings. That certainly was not my intent.

Suez39

SuzJ and Twostepr

I appreciate ur comment Suz and hopefully I won't have to scream. Lol And Twostepr maybe it was a misundestanding. I know we have to do was has to be done. Going through the pain and healing taking it one day at a time. I have read your previous posts and feel bad for you. Going through surgeries treatments etc by yourself is not only difficult but grueling. Your positive thinking and perserverence is an inspiration. I truly hope one day you can at least get "close" to normalcy. I guess I'm hard on myself cause I Expect to b stronger and just take the pain that will be coming very soon. Please read my new post. 

Sincerely

Susan