How can I defeat my anxiety about medical tests and surgery?

I had this message from Karen @pianopain12 , and we agreed to share our conversation here so others may join us.

From Karen:
"I noticed that you said that you had to use your creativity to overcome your fears. I, too, have done this with success. For instance, I had a 45-minute MRI with such racket, and banging. Not to the mention the loud sound of a huge locomotive driving through the tube. I'm not claustrophobic, but my body was actually getting very hot! I know that increased temperature during an MRI is NOT typical. I therefore imagined that there was a leprechaun outside of the tube banging on the tube, trying to get in. I talked to him aloud, and said, "Come in! The door's open." I also imagined a kindly old engineer guiding that locomotive through the tube. I would call out, "All aboard...." I wondered if the MRI technicians could hear me, and I hoped not. What tricks of creativity do you find helpful in dealing with fears. My greatest fear is being permanently disabled, and the next HUGE fear is the surgery. I've watched many decompression surgeries and they are gruesome. The idea of lying on my belly while intubated sounds horrifying. (Not as horrifying as NOT being intubated, however!)"

@pianopain12 Karen, since you love music, there is a lot you can do to use music to help with fear. I had to face my own fear of major surgery when I needed surgery for a compressed spinal cord. Every day as soon as I thought about spine surgery, my blood pressure jumped and I felt the butterflies in my stomach. I started listening to relaxing music that I loved. I put on my headphones and focused on the music and my breathing and I did slow deep breathing in time to the music. I found out that I could drop my blood pressure 15 points by doing this, and I did this every morning and every time I felt anxious. I tried to see colors in the music in my mind. After I had mastered this trick, I wanted to be able to associate a particular surgeon with the good feelings I was getting from the music, so while I did my listening and breathing, I looked at a photo (or an online video without sound) of the surgeon. I did this over and over to train my brain that this guy was going to be OK. When you are waiting to meet a surgeon, the moment the door opens is a kind of anxiety producing event, and I wanted to lessen my response to that so I could focus on the rest of the appointment instead of thinking about my fears.

Later I added singing into my routine when I listened to the music, so I ended up singing to the image of the doctor. Sometimes I woke up in the middle of the night and sang along with my music.

I decided to have a special song to sing with words that had something to do with my dilemma, so I wrote some lyrics as a parody song. I had always liked Rogers & Hammerstein's television production of Cinderella. Right after Cinderella arrives at the ball and meets the prince, they sing a duet, "Ten Minutes Ago" and I wrote words to that about that moment when the door opened and I met my surgeon, but this time, I had met the right surgeon who would be the one to help me by decompressing my spinal cord. Once you have a song like this, you can use it again when you need it, and I did need it eleven months after my spine surgery when I needed some emergency oral surgery. I had an hour drive to the office to meet a new surgeon and I knew I was clearly in trouble. In my mind I told myself that this was a consultation to avoid thinking about surgery (but it had been scheduled with enough time to do the surgery). I sang my "Ten Minutes Ago" song over and over in the car singing along with the actual recordings from the TV production until arrived at my appointment. The surgeon talked to me and told me it was my choice if I wanted to schedule the surgery for another appointment or I could do it now. I choose to get it over with since waiting would just keep me worried, and I was doing OK. I talked to him about my past fears with dentists as I used to be someone who passed out after an oral injection. He was also very apologetic about that since he had to do it, and I would need to reschedule if I needed anesthesia since I didn't have anyone to drive me home afterward. During the procedure, I had my eyes closed imaging I was somewhere else and visualizing walking on a trail in the mountains, but when I got brave enough, I opened my eyes and I could see what he was doing in the reflection in his face shield. So this was a victory. I did fine all by myself, and later that day this kind oral surgeon called me to ask how I was doing. Having a compassionate doctor sure does help. My decision to go alone to the appointment was because I didn't want to have to worry about my husband being squemish about any of this and I was fine by myself.

OK, so now let's talk about the fear you have or being permanently disabled vs the fear of going through surgery. That is the same choice I had, and like you, I had the creative gift of doing my artwork that I was loosing because I could not control my arms anymore because of spine problem, and you have your music performance that is in jeopardy. Let's think of this another way....Love conquers fear..... I think we both want to participate in the arts for the same reason... Love.... because performing music is an act of love in doing it just like painting is an act of love expressing what inspired me. When you love something, you want to protect it. How many people do get to choose if they will be disabled or not? Some people never get a choice like this. Isn't that in itself a gift to have that choice to know that you have that power over your future? You will need help from a surgeon of course, but imagine how that will feel to be able to return to music performance and what you love.

You mentioned fearing the intubation. You won't feel that. It can give you a sore throat after surgery, but this is your lifeline to oxygen during surgery, so it is a very good thing. All the preparation is done after you are completely sedated, so you won't be aware of it. What is is about the tube that worries you? Do you think your leprechauns can help you out there too? An oh my... does this guy also sing and dance? What song would he sing and can he teach it to you? Maybe that tube will become a flute and can play a little song.

I have watched surgery videos too with some interest because I do have a biology degree. They can be frightening to watch when you start imagining it is happening to you. If you are feeling vulnerable like that, maybe don't watch. I do need to understand how everything works and what the surgeon is doing and for that, there are a lot of great animated videos that explain where everything looks neat and tidy.

Just remember, it is your choice. You choose the surgeon you hire for the job. You choose love over fear, and you choose to join your surgeon's team. That is how I thought about it because they can't do their jobs without me! You choose the path that leads toward ability, not disability, and you can take comfort in knowing you will be your own best friend.

Can you imagine some more games to keep your mind busy? Remember to breathe.......

Jennifer,
Your words about fear are wise and they resonate with me. I've had countless "pep talks" with myself about fear, read books about fear, but nothing really made sense in a way that it changed my beliefs about fear. I never thought of it as an obstacle blocking my path to the life that I love. I had never considered that many people don't have the luxury of choice, when it comes to being disabled. It IS a gift to have choice. Absolutely. I also found your description of "the road to ability" versus "the road to disability" to be very enlightening. I AM on the road to disability. I had not considered it in those terms, but those terms are truth. I don't know how far down this road I have travelled, but I think that it is time for me to "turn around," so to speak, and go in another direction. What I am doing is NOT working for me. I laughed when I thought about my leprechaun singing. I have imagined him talking, when I had the MRI and he was banging on the tube. I actually told him aloud,"You must not be a very bright leprechaun. You can simply open the door and come in!" I did imagine him muttering in a lovely Irish brogue. I like the idea of the endoscope being a "magic flute." I have already decided to go see 2 other surgeons for advice. I just need to secure an appointment. I also read on your website that you asked your oral surgeon to tell you something about himself that had nothing to do with being an oral surgeon. That approach also makes sense, because we always feel more comfortable putting our trust in someone that we "know." I am rarely fearful when I have a physician/friend perform any procedure for me. I am able to direct my mind more toward the "friend" part of our relationship, than the physician role.Your words are helpful and liberating for me. I definitely will be asking more questions and getting more input from other surgeons. The choices are there, but I must be like my persistent leprechaun from the MRI, and knock on those doors! Thank you for sharing some of your experiences; many lives are touched.

@pianopain12 That is what I did too. I thought about my surgeon not as a doctor, but as a nice guy with a family who was really happy in his life, like to the next door neighbor you want to have who is there to help. My reasoning was that yes, it helped me feel safe because my fears were rooted long ago in being bullied when I was young, and I was never safe, and that just got worse when I had to go to the doctor or dentist and endure some painful event from a guy who didn't care about my feelings. That was the child in me, and this thinking wasn't serving me well anymore. My parents had not been supportive when I was young and I was teased about being afraid. I had to re-frame that thinking into looking at my options as an adult where I get to make educated choices, which included the choice to get some help on the path to regaining my ability. The other important reason that I wanted doctors who were relaxed and personable and compassionate was that I wanted to know there were happy in their professions. Physician burnout is very real, and I felt safer if I knew my doctors were not stressed out. Also for the first time, I had doctors who were a generation younger than I am who are still enthusiastic and loving their careers. I asked them why they chose their profession as one of my interview questions, and I asked other medical professionals who worked with them if they were happy at their jobs. I had taken things a step farther too by making sketches of my doctors so I could like them. That was a little mind game I played with myself because I only draw or paint what I like, and I wanted to train myself to like them even though I didn't know a lot about them, but knowing that they loved and cared for their children was enough for me because I felt safe if I knew that their kids felt safe.

Jennifer,
I just remembered another time when knowing a doctor as a PERSON changed my fearful feelings into trust. About 5 years ago, I had a pretty bad speed skating accident. I smashed my wrist into so, so many pieces. When I got to the hospital, they tried a very painful and unsuccessful closed reduction ( I call it the Crunch and Munch procedure.) The docs had to take me to the operating room for an ORIF (Open Reduction and Fixation.) J, you know what that is. All of the screws and plates used to piece your bones back together.They could do nothing for my Ulna, but the radius was rocking! I learned that the young doctor had been a drummer before med school. That instantly put me at ease. "A-ha. Another musician. Thank God!" I looked at him, and said ," You've got to save my hand. It's the hand, all about the hand." He smiled knowingly, and I have to say, that 5 years later, my broken hand is BETTER than it was before I broke it. I can reach octaves effortlessly now, whereas before, I had to stretch. He set my hand in a slightly different anatomical position. (I believe that it's called the Cotton-Loder position.) My hand is "better than before," to quote that 1970s series, "The Six Million Dollar Man." I am now bionic-lol! Maybe I could imagine that my spine was being surgically fixed in such a way; better living through bionics!

Hello- It's nice to meet you. I'm a long-time Lung Cancer survivor and I understand these questions so well. My first answer is that it's normal to feel these things. They have a purpose. And it's important to feel them. They actually help us more than bother us.

Our innate fight or flight response is a key component in this process. When faced with a risky scenario, our bodies experience a surge of adrenaline to prepare us to either engage or seek safety. With cancer, I learned that it helped me to focus more intently on what needed to be done- tests, scans, etc. I was a force to be reckoned with! As you know, this is the rosy side of fear and anxiety.

I have a tendency to curl up and think things out when I'm anxious and fearful, wondering what will serve me better- feeling anxious and fearful - what am I getting out of them? How are they serving me? In order for me to work with them so that in the long run they do not over-power me, I need to deeply feel them. If I don't then it's as if you lose someone and don't grieve.

There are several things to think about:
What am I afraid of?
Is this fear realistic?
What is the worst that can happen?
Where in my body do I feel fear?
How do I feel when I take a few deep breaths?

So to fear death is realistic- But when I was faced with this it made me really think about what was important in living. I had to ask big life questions, some of which I'm still asking. I'm still afraid but have much less fear than I used to. I think, for me at least, the more I think about something the more I become familiar with it. The more familiar, more educated, and have repeated fearful feelings, they lessen in their acuteness, at least for me.

When I was first faced with lung cancer 23+ years ago sites like Connect weren't even heard of. I found that telling my story, sharing my feelings helped me. I remember my first elevator trip up to the OR for my first lobectomy. I was so afraid, I was crying and almost grabbed a hold of something so that I couldn't be wheeled out. Coincidently a nurse from my doctor's office was on the same elevator and came to my rescue and helped calm me down. And this is what it's all about.

I have always loved to write and draw. I am an administrator for my High School Facebook group and my classmates encouraged me to write a blog. And I did. https://my20yearscancer.com/

Shortly after my blog was up and running I found Connect. I was obsessed to find a place that I could be safe, feel loved, and help others. And the rest is history.

Do I still fear my chronic lung cancer? Yes of course. I still can still do justice to anxiety, but by allowing my feelings I can use them, be creative, help someone and get on with things.

In the last couple of years I have faced many tests and procedures. @merpreb mentioned, the unknowing is where my anxiety comes in. I want to understand what is going on, what my team is looking for, in order to be a partner with them on this journey.

Were all the scans/procedures comfortable? Oh, no! But laying in an MRI tube, I assigned patterns to different sounds and in my head, came up with some fantastical pictures!

I also made sure to be pleasant to any staff involved in my case. While I may have been hurting [sometimes pretty bad!] I managed a smile, a comment about outlandish duty shoes, or something, to personalize the situation, and to distract me just a bit. Because I have to use a cane often, I will tell staff "I am movitating as fast as possible" going down a hall. Being pleasant has nothing to do with the outcome of the scan/procedure, but a lot to do with my mindset. A "hello", "thank you", "have a wonderful rest of your day" carries over to the next patient. And honestly, I get more information from staff this way!
Ginger

Thank you for your story. There is much to learn from each other and our collective experiences.

@gingerw-I do not like to be confined. I also find that I am not able to rely on myself for "self-hypnosis" or putting myself in a trance. So I have chosen to use valium for MRIs. Medicine has given us so many options to use, so many choices. When I find myself in a situation that places importance on good pictures like scans they outweigh any wish to be brave and suck it up. I like to reserve the use of my anxiety and fear for other uses. Unfortunately, there has been too much focus on being brave at times when there are other alternatives. It gives pain a bad rep. 🙂

I am always very polite and it goes a long way!

@pianopain12
Karen, I had a similar experience looking into the eyes of my spine surgeon and telling him his hands would be saving my hands today, and I thanked him. Gratitude sure helps in getting past fear and replacing it with good feelings.