50, Tonsil cancer, severe panic disorder

ABQChristopher
ABQChristopher Member Posts: 2 Member
in Head and Neck Cancer #1

The state I live in helped me to find a job I could work at and, in their assessment of me, they declared me "most significantly disabled", which is the top (bottom?) of their scale. I have multiple diagnoses, therapists, meds. Just making clear this is not a self-diagnosis.

After five years of being increasingly overmedicated, I and my team decided to wean me off all the meds and start me on something new and milder.

The day after I took the last of the meds that had been keeping me calm for five years, I got the cancer diagnosis. This has all been extremely bad. My shrink started me on low dose Welbutrin and I take Buspar three times a day.

Holding my wife's hand and looking into each other's eyes got me through the needle biopsy, wherein he used three different needles. I was near panic at CT scans, PET scan, etc.. For the making of the mask, my wife was not able to accompany me but I got through it with the help of wonderful people at the clinic. It was kinda horrible.

On Monday, I went for my first radiation treatment and my wife came with me but had to stay in the waiting room.

I lost it completely and couldn't do the treatment.

They locked down the mask and I felt like I was being strangled and i just.... stopped being me is the best way I've come up with to describe it. I lost all ability to be rational. I don't know that I've ever had a reaction that bad. If I had theorized about the worst that could have happened, I don't think it would have even crossed my mind that I just wouldn't be able to do it.

I am so ashamed and embarrassed and feel like I've let my wife down - and everyone who's been encouraging me through the last month. And I know that, while they were dealing with me (they let me up and tried again for a total of three tries), I was holding up their schedule and was too embarrassed to look at anyone in the waiting room when I left.

They wrote me a scrip for Ativan for the next try, which I picked up today and I tried one an hour and twenty minutes ago. And I'm not sure I feel much of anything but a little weird in my head. And, short-tempered, as I just found out when my wife asked me to do something while I'm typing this. So now, I'm really afraid I'm going to fail again tomorrow, my next scheduled 'first' treatment.

I don't know how much patience they have at the clinic, how many times I get to try, what more they can possibly do for me. Will they have to come to the point where they say they just can't help me? Will I die because of my panic disorder??

I had no idea it would feel like being strangled. And I was having too much anxiety already to adjust to such a new situation in that moment. I have more information now and have had time to digest it. I spoke with two psyche people today - one with the ACS and one at the hospital - and the one at the hospital has put in a plea for the doctor to approve my wife going back with me and being there every moment she can be.

As someone who has been in psyche treatment for five years, I know a great many exercises and disciplines - not that they were doing me good on Monday.

But, anything anyone could say to assure me would be great.

Comments

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #2

    ABQ,

    I am not claustrophobic but after getting fitted for the mask and having my 1st treatment, I too felt like I was being strangled. It was terrible to me and I did make it thru the first radiation, but wondered how I was going to make it thru 29 more of them. I spoke with the Technician and he asked what caused me the most stress. I told him the feeling of not being able to breath.

    He said he could cut the mask in a way that would not effect it in anyway but allow me to be a little more comfortable. He cut away the area around my eyes so I could blink. He cut the area under my nostrils so I could breath easier that way. And finally, he cut the area around my mouth so I could move my lips a little bit . Just those simple adjustments allowed me to feel comfortable. They often times offer to play music you like or bring in. I said play what you like. I would put my mind in a different place. I wasn't in a Radiation room, I was flying a kite as a youth or riding my 10 speed bike for exercise.

    You can do this and for your information, you are not the first person that has walked out of the Radiation treatment room. The important part is that you walk back in. It doesn't matter how many times we get knocked down, what is important is how many times we pick ourselves off the mat and get back into the fight.

    My Best to You, Your Wife and Everyone Here

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #3

    OK ABQChristopher, Welcome to the CSN H&N discussion board.

    Might I suggest you check out the Superthread at the top of the Head & Neck main page it is loaded with information and I am sure there is some info in there on anxieties and the mask. The mask can be a bit distressing if you put too much forethought into it. So here goes. You end up thinking about it a lot and by the time you get to treatment, you have yourself convinced that as soon as they clamp the mask on the table you are going to have your air cut off, or something might happen and you should fear it. However, you had the mask made and were clamped to the table for probably as long as your treatment will last and you made it through that. Get your Ativan in ahead as they tell you and don't put in any thought to it ahead of time and think of each session as a mask-making process you went through to start out with and then merge over to the idea that this is your lifesaving treatment and you are going to do it one way or another. I am sure if your mask was too tight and was not fitting as it should the techs would have spotted it and realized there was a problem but since that didn't happen you know your mask is good. OK just calm yourself at your next session, have your Ativan in and just relax on the table and the techs will do their work aligning you etc. and believe me you aren't the first person who has had issues with a mask during radiation and you aren't the first one the techs have worked with. They know their job and they are good at it and they will not let you choke or come to any harm whatsoever, they will give you excellent care and they have you in visual supervision at all times. Relaxing may be the key. But first, once you are fastened down the process will start and before you know it it will be over. Radiation sessions are not usually long and if you ask your techs they can tell you how long yours are. So once you are secure you have nothing to worry about, nothing to do but get your treatment for that day. I like Bible verses so I would concentrate on Bible verses during my treatment. I would pray to God about anything I could think about that needed praying to catch up so to speak, talk to God and let him know you are looking to him for strength to do this and pray for him to get you through this. I would think of gospel or other songs in my head. One of the Bible verses I always liked was "I can do all things through Christ which strengtheneth me". So I knew I had God's power getting me through not my own. The techs will also put on any kind of music you want and loud if you want just ask. Let your mind wander to anywhere you like to be like the beach, the mountains, etc., and think about things in that area, the idea here is to keep your mind busy so the treatment is just an ignored background thing going on that you really don't notice because your mind is concentrated elsewhere. Anything at all that interests you think about it now and go in there with your brain full of ideas to use. Plan the rest of the day while getting treatment, think it out in great detail. You have to get the focus off this mask and on what is important, the treatment, getting this safe effective treatment that so many have had and in multiple sessions. You are just another one getting it done and they would all tell you if they did it you can. On the table, you are in one of the safest places around with professionals monitoring you. I am sure once you get your first treatment in and done that will break the ice and you will be good to do the rest of them. I can remember it was difficult for me to get my first treatment done but I had read a lot about it before I went in and was prepared by taking my Antivan and had a plan to listen to the music they played and to keep my mind wandering and off the process.



    I looked through the Superthread and found some things to help you. Here is a posting of just what you are going through, a good read.

    I need some Radiation Mask advice--Please Help

    He said "I went for the trial run today, and they put that mask on me, and I lost it."

    https://csn.cancer.org/node/197386




    Next Posting--

    My first day of radiation

    My first day of radiation starts today at 2:00. I am so terrified of being strapped down. I know it is for only a short time and I don't understand why I'm so scared.

    https://csn.cancer.org/node/206531


    Next Post--

    Surviving The Mask

    https://csn.cancer.org/node/186155


    Here is a video of a fella getting his done, nothing to fear the mask makes your treatment accurate and effective. He is in the film biz so the treatment center let him post cameras at different angles to come up with this video.

    So 118 days since I have completed radiation therapy, an MRI and a PET scan and no signs of recurring cancer. I still have a long way to go before I am in the clear for sure but early signs look promising. Funny with all that I have been through I feel happier and healthier than I have in a very long time, so for me I would say that cancer has been as much of a gift as a curse. Thank you to everyone for all of their love and support. I can't tell you all how much it means to have so many people who care about you and every little note and like helped! So being in the film biz i thought it appropriate to documents some of my experience so here is a fun little Go Pro video I made throughout my six weeks of daily radiation treatments. I am happy that the incredible staff at The University of Pennsylvania let me mount my cameras all over their machines. I am pretty sure some of these shots are a first! It almost makes it look fun and I think the song is more than appropriate, props to Imagine Dragons! Love you all!!

    https://vimeo.com/78791415


    Next another video that may help and one after that and then I'm done for now.

    Introduction to Radiation Therapy of the Head & Neck

    https://www.youtube.com/watch?v=-dWm40P6elM



    And one more from a fella's personal perspective about the mask and his overall treatment in general.

    Escaping Fear: How Radiation Therapy Masks Saved My Life

    https://www.youtube.com/watch?v=-ey99P24e_o


    OK my friend I have loaded you up with things to see and watch and gain confidence in yourself as I have confidence that you can do this and that you will prevail and be cancer free after treatments are over.

    Our Motto Here Is NEGU (Never Ever Give Up)

    index.png


    Courage (Small).jpg


    Wishing You The Best

    Take Care, God Bless

    Russ

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #4
    https://csn.cancer.org/discussion/comment/1709396#Comment_1709396

    Love it Marine, you always come through with good sound basic advice that is so helpful and defining.

    Take Care, God Bless

    Russ

  • MarineE5
    MarineE5 Member Posts: 1,034 Member
    #5

    Russ, Thank you for your kind words. You go the extra mile(s) to help anyone here with their questions. It is very helpful with all the links or direction to the SuperThread.

    Take Care

  • ABQChristopher
    ABQChristopher Member Posts: 2 Member
    #6

    Well, I did it!!!

    I read the stories you(s) guided me to, reached out to an ACS counsellor, even spoke with a psychologist at the cancer center. I did a test run of the Ativan to know a good dose for me and my wife made me drink a lavender tea (*hurp!*) that did, in fact, seem to relax me a bit. And I made a list of questions and concerns and showed up early to talk to someone before we tried again.

    At T minus one hour, I washed down the Ativan with lavender tea.

    The young woman my wife and I spoke with was very receptive and caring and they made concessions such as not bolting down the snaps that restricted my throat and letting me have some time testing the mask and how I'd respond and I asked questions. For example, they agreed to a test of snapping one set at a time so I could prove to myself that I was, in fact, able to breathe. They were all very patient and wonderful people!

    To be fair, I do expect to continue to need the meds. The feeling of clenching my teeth but I'm not clenching my teeth. The sudden moment when I feel a strong anxiety because my head is trapped. Those are very unpleasant, of course. But, of course I expected that! I didn't expect easy, comfortable. This is way outside the common human experience and potentially pretty terrifying. So, I expect to need help. I don't have normal nervousness. I have a severe panic disorder.

    So, I hope maybe one day someone will find great use from all the posts on this page.

    Thank you, all!

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #7

    Ye-HAH, Christopher, congratulations, wonderful news.

    You got this.

    Those rad techs are some of the greatest people to work with, very caring, and patient, and want you to succeed. Ain't they the greatest?

    And yes now that you got the dose of your meds down and it all works stick with the dose and what's working and you will be surprised to find you may become very relaxed the more you do these because you will see your fear lessen and your confidence build.

    You are on your way.

    You are doing well, Congrats.

    Wishing You The Best

    Take Care, God Bless

    Russ

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