Claustraphobic and Anxiety prone

jkinobay
jkinobay Member Posts: 298 Member
edited March 2014 in Head and Neck Cancer #1
Assume I will need a "mask" during IMRT. Hopefully not, but if so need tips on dealing with claustraphobia and anxiety. Have Attivan, but prefer not to take it if possible. Your thoughts?

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    Claustrophobia and anxiety? I know them well, jk. In my case, they poured the hot plastic over my face and torso, and then let it harden, and THEN let me have a trial run bolted down under the rad 'gun'...following which I advised them "I'm gonna die!". They asked why and I informed them I was NOT going to get in that bolted down mask again under any circumstances. In fact, jk, when they suggested I stay in the hospital "like the children" so I could get iv drugs, this 49 year old man (at the time) said "Okay!"...NO shame :)

    Jk, I solved my problem with a small dose of valium every morning prior to the session (they laughed at me re the staying over night idea :)). It did not knock me out, didn't even come close, but took the edge off (eventually), and as I started to get used to it (I never really did "get used to it", but that's just me) I cut back on the dose until, by the end, I was going in "cold".

    So my thought is to do what you need to do to be most comfortable with the situation, if it should come to your needing to do it. It is simply too painful and stressful to ask you to lie there through 30-45 minutes of claustrophobia and anxiety. It DOES, jk, get better, like anything, as you repeat the process.

    Have fun, my friend!
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #3
    I still have my "mask" hanging on my wall in my basement! Sick huh,The worst part is being fitted for it and going though the test runs.The actual treatment lasts for only 15 minutes.They played very soothing music and I closed my eyes and thought of being on a beach with my wife.It is a very weird feeling being fastened to a table but it needs to be done so the treatment targets the cancer not the good cells.Soccerfreaks had the right ides about a mild dose of valium to help you relax.
  • jkinobay
    jkinobay Member Posts: 298 Member
    #4
    soccerfreaks said:

    Claustrophobia and anxiety? I know them well, jk. In my case, they poured the hot plastic over my face and torso, and then let it harden, and THEN let me have a trial run bolted down under the rad 'gun'...following which I advised them "I'm gonna die!". They asked why and I informed them I was NOT going to get in that bolted down mask again under any circumstances. In fact, jk, when they suggested I stay in the hospital "like the children" so I could get iv drugs, this 49 year old man (at the time) said "Okay!"...NO shame :)

    Jk, I solved my problem with a small dose of valium every morning prior to the session (they laughed at me re the staying over night idea :)). It did not knock me out, didn't even come close, but took the edge off (eventually), and as I started to get used to it (I never really did "get used to it", but that's just me) I cut back on the dose until, by the end, I was going in "cold".

    So my thought is to do what you need to do to be most comfortable with the situation, if it should come to your needing to do it. It is simply too painful and stressful to ask you to lie there through 30-45 minutes of claustrophobia and anxiety. It DOES, jk, get better, like anything, as you repeat the process.

    Have fun, my friend!

    Do you remember the valium dosage? Does the mask allow you to see and breath freely? I don't like the idea of drugs but I don't like the prognosis that lies ahead if I don't get through these treatments. I'll git er dun, thanks to modern pharmaceuticals I afraid. Thanks for your insight......stay well. JK
  • jkinobay
    jkinobay Member Posts: 298 Member
    #5
    vinny59 said:

    I still have my "mask" hanging on my wall in my basement! Sick huh,The worst part is being fitted for it and going though the test runs.The actual treatment lasts for only 15 minutes.They played very soothing music and I closed my eyes and thought of being on a beach with my wife.It is a very weird feeling being fastened to a table but it needs to be done so the treatment targets the cancer not the good cells.Soccerfreaks had the right ides about a mild dose of valium to help you relax.

    Same question for you re: Do you remember the valium dosage? Does the mask allow you to see and breath freely? I don't like the idea of drugs but I don't like the prognosis that lies ahead if I don't get through these treatments. I'll git er dun, thanks to modern pharmaceuticals I afraid. Thanks for your insight......stay well. JK
  • TereB
    TereB Member Posts: 286 Member
    #6
    jkinobay said:

    Same question for you re: Do you remember the valium dosage? Does the mask allow you to see and breath freely? I don't like the idea of drugs but I don't like the prognosis that lies ahead if I don't get through these treatments. I'll git er dun, thanks to modern pharmaceuticals I afraid. Thanks for your insight......stay well. JK

    I've had my own experience with claustrophobia and anxiety during treatment. I had a face mask for radiation. My mask was made of strips criss crossing so it sort of had holes. Whatever mask you have, you can breath, remember that. At first I hated being "attached" to the table, not being able to move and with a very strong urge to bolt from the hospital. My treatments were for 10 mins so it was fast and easier to bear. Your mind is powerful, choose an image or something that will help you relax.

    I had trouble with my MRIs, the machine felt like a coffin to me and the test lasted for two hours. At first they injected a mild sedative but later I just told myself I was going into the lifepod on my way to the planet Waywaybeyondo. As the banging of the MRI machine started, I said all systems work, ready to take off and counted backwards from 10. After about five minutes I was sound asleep. I was actually able to take a nap while in the machine and came out refreshed.

    If you think a sedative works well for you, by all means, use it. Anything that will help you relax a little during treatment is good.

    All the best,
    Tere
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #7
    jkinobay said:

    Same question for you re: Do you remember the valium dosage? Does the mask allow you to see and breath freely? I don't like the idea of drugs but I don't like the prognosis that lies ahead if I don't get through these treatments. I'll git er dun, thanks to modern pharmaceuticals I afraid. Thanks for your insight......stay well. JK

    jk - I am certain that size, for one, would have something to do with dosage, but, as I recall, mine was 10mg, which I cut in half at some point, before finally not taking at all.

    Re the breathing, someone else has answered, and re the openings, they gave me eye openings and, after realizing my claustrophobia would be an issue, cut a hole for my mouth as well. I don't know why this helped like it did, but it did.

    Vinnie and Tere both make good suggestions re getting through it with some mental imagery, if that will work for you. Re the music, it helped me to get through it only because I used it as a clock, estimating each song at 3 minutes, and counting the time elapsed thusly. I, by the way, had treatments of between 30 and 45 minutes, so that, too, can be different.

    Hope this becomes a moot point for you!
  • jkinobay
    jkinobay Member Posts: 298 Member
    #8
    TereB said:

    I've had my own experience with claustrophobia and anxiety during treatment. I had a face mask for radiation. My mask was made of strips criss crossing so it sort of had holes. Whatever mask you have, you can breath, remember that. At first I hated being "attached" to the table, not being able to move and with a very strong urge to bolt from the hospital. My treatments were for 10 mins so it was fast and easier to bear. Your mind is powerful, choose an image or something that will help you relax.

    I had trouble with my MRIs, the machine felt like a coffin to me and the test lasted for two hours. At first they injected a mild sedative but later I just told myself I was going into the lifepod on my way to the planet Waywaybeyondo. As the banging of the MRI machine started, I said all systems work, ready to take off and counted backwards from 10. After about five minutes I was sound asleep. I was actually able to take a nap while in the machine and came out refreshed.

    If you think a sedative works well for you, by all means, use it. Anything that will help you relax a little during treatment is good.

    All the best,
    Tere

    Thanks, very encouraging. How is your health now?
  • jkinobay
    jkinobay Member Posts: 298 Member
    #9
    soccerfreaks said:

    jk - I am certain that size, for one, would have something to do with dosage, but, as I recall, mine was 10mg, which I cut in half at some point, before finally not taking at all.

    Re the breathing, someone else has answered, and re the openings, they gave me eye openings and, after realizing my claustrophobia would be an issue, cut a hole for my mouth as well. I don't know why this helped like it did, but it did.

    Vinnie and Tere both make good suggestions re getting through it with some mental imagery, if that will work for you. Re the music, it helped me to get through it only because I used it as a clock, estimating each song at 3 minutes, and counting the time elapsed thusly. I, by the way, had treatments of between 30 and 45 minutes, so that, too, can be different.

    Hope this becomes a moot point for you!

    I only have one eye and as luck would have it it is my right eye and the treatments will only be on my left side. So, hopefully an eye and mouth opening will help tremendously. BTW, got great news Thurs., full body PET found me to be cancer free everywhere except the tumor excision site and it is small. So I am a candidate for IMRT but unfortunately have to use Cisplatin once a week too. I'll get there, largely due to the experience and support of great people like you. Thanks a million. Probably start treatments in the next 2 weeks or so. Later.......JK
  • TereB
    TereB Member Posts: 286 Member
    #10
    jkinobay said:

    Thanks, very encouraging. How is your health now?

    My health is hard to describe. I am actually very healthy, do not even get colds. On the other hand, my cancer has no cure so I get palliative care (radiation) if a tumor causes pain but this doesn't happen often. My cancer is very rare and I am rare among the rare.

    The way you see things, attitude, your mind, are things that can help you go through treatment or whatever else comes up. At the beginning I was scared, didn't think I could go through the whole treatment, surgeries, etc., sometimes I cried at the sight of a needle. Treatments and follow-up tests are now a lot easier for me.

    And remember, anyone can do it... and that includes you. We all get scared and nervous, the thing is to find whatever we need to help us at that moment.

    All the best,
    Tere
  • TereB
    TereB Member Posts: 286 Member
    #11
    jkinobay said:

    I only have one eye and as luck would have it it is my right eye and the treatments will only be on my left side. So, hopefully an eye and mouth opening will help tremendously. BTW, got great news Thurs., full body PET found me to be cancer free everywhere except the tumor excision site and it is small. So I am a candidate for IMRT but unfortunately have to use Cisplatin once a week too. I'll get there, largely due to the experience and support of great people like you. Thanks a million. Probably start treatments in the next 2 weeks or so. Later.......JK

    GREAT!! I am happy the rest of your body is cancer free, that's great news! I am sure you are going to do very well with treatment.

    I will keep you in my prayers.
    Tere
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #12
    jkinobay said:

    I only have one eye and as luck would have it it is my right eye and the treatments will only be on my left side. So, hopefully an eye and mouth opening will help tremendously. BTW, got great news Thurs., full body PET found me to be cancer free everywhere except the tumor excision site and it is small. So I am a candidate for IMRT but unfortunately have to use Cisplatin once a week too. I'll get there, largely due to the experience and support of great people like you. Thanks a million. Probably start treatments in the next 2 weeks or so. Later.......JK

    Awesome!
  • jkinobay
    jkinobay Member Posts: 298 Member
    #13
    TereB said:

    My health is hard to describe. I am actually very healthy, do not even get colds. On the other hand, my cancer has no cure so I get palliative care (radiation) if a tumor causes pain but this doesn't happen often. My cancer is very rare and I am rare among the rare.

    The way you see things, attitude, your mind, are things that can help you go through treatment or whatever else comes up. At the beginning I was scared, didn't think I could go through the whole treatment, surgeries, etc., sometimes I cried at the sight of a needle. Treatments and follow-up tests are now a lot easier for me.

    And remember, anyone can do it... and that includes you. We all get scared and nervous, the thing is to find whatever we need to help us at that moment.

    All the best,
    Tere

    JKINOBAY- PLAN UPDATE: Please comment
    FIrst Rad Oncol appt yesterday. Dr. Michael Manning, Tucson. A great guy, very positive but doesn't sugar-coat. Compassionate about what he knows you the patient is worried about. Here's his plan, please tell me what you think based on your experiences:

    **Thur this wk. fitted for mask and bite-down apparatus, also take a few readings on the sites to be treated. Gave me prescript for attivan.
    **Off for 10 days or so while they do their computer programming
    **Back for 3 consecutive daily practice runs to confirm precision
    **Start 35 daily treatments which will target tonsil excision site as well as lymph nodes in both sides of neck down about to the collarbone.
    **Treatments will be IMRT with reduced exposure to the left (bad side) parotid gland and no exposure to the right side. For this reason he DOES NOT RECOMMEND Amifostine, says it only works in 50% of 30% of patients and has side effects as well. He says I should have few if any Xerostomia symptoms.
    **Says my throat will get very sore, may have trouble eating, swallowing, drinking, etc.late in the program, SO, wants me to have a PEG installed in the first week or two of treatment JUST IN CASE it is needed before treatment ends. Cheap insurance?? He says there is a very good chance that if I tough it out and force myself that the tube will not be used. But to have to install late in treatment regimen would be more uncomfortable and he say NUTRITION is 1/3 of the program in importance. ATTITUDE= 1/3, PRECSION/CONTINUITY OF THE IMRT = 1/3.
    **Concurrently, I will have 1 low-dose treatment of Cisplatin each week. Supposedly "low-dose" means fewer side effects. Says anti-nausea med should easily prevent that. Doesn't think I will have hair loss.

    What do you seasoned veterans think about all of this? Am I headed in the right direction? Dr. Manning says not to worry, places my cure rate between 80-90% and says that I will live a long and happy life. I am currently 58.
    **Anyway, your thoughts and advice greatly respected. JK
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #14
    jkinobay said:

    I only have one eye and as luck would have it it is my right eye and the treatments will only be on my left side. So, hopefully an eye and mouth opening will help tremendously. BTW, got great news Thurs., full body PET found me to be cancer free everywhere except the tumor excision site and it is small. So I am a candidate for IMRT but unfortunately have to use Cisplatin once a week too. I'll get there, largely due to the experience and support of great people like you. Thanks a million. Probably start treatments in the next 2 weeks or so. Later.......JK

    that's fantastic!you will be able to breathe with no problem.It's funny about the music like soccerfreaks said I timed them too!! Good luck
  • Christmas
    Christmas Member Posts: 100
    #15
    I'm claustrophobic also. So, I keep my eyes closed before they put on my mask or in the MRI chamber. That way, I can't see the "small space" that I'm in. So, it is mind over matter.
  • Unknown
    Unknown
    #16
    This comment has been removed by the Moderator

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