Stages of grief?

[BlueSky]

This is more of a question for the people who have been dealing with the diagnosis of AN for a while, do you feel like you went through the stages of grief after diagnosis? Since I was only diagnosed a few weeks ago I would like what to expect when it comes to the emotions I will be facing. I know it is an individual process but I would think there are some common experiences.

[jenichol]

When I first received my official dx, I was mad and wanted to run away.  I felt like getting in the car and driving over the mountains, but I have a family and knew they would wonder what happened to me.  Instead, I went to the pool and swam about 100 laps.  I felt better after that.  I attributed my behavior to a fight or flight response.  I have come to accept what life has dealt me, and I am at peace.  I am counting my blessings and realizing there are so many people much worse than me.  I particularily think of ones who have receieved a dx of glioblastoma.

I still work out regularily.  Getting my heart rate up and sweating is great therapy for me.

Hope this helps.  My prayers will be with you as you come to terms with your dx.

Jan

[It is what it is]

The diagnosis alone deserves to be grieved. It can bring shock, denial, sadness, anger, bargaining, and acceptance in any order and we can go in and out of those feelings multiple times.  Not everyone needs to feel all the stages of the process.  Each stage of our journey can take us into a grief process.  If there are longtime aftereffects, we can re-experience grief periodically as waves that peak and flow.  Grief is normal and as long as it is not stuck, we will be able to feel our feelings with support and go on with our lives with more compassion for others and ourselves as witnessed on this discussion list. 

By the way, I've been a psychotherapist for 35 years which doesn't make me an expert with coping with AN. 

Warmly,

Karen F.

[Cheryl R]

My first AN was found in 2011 and not as much info on here like now.   I was scared my life was over with getting to work (as a nurse,no less)  I decided on surgery but not for 3 months later past harvest time due to my husbands grain elevator job.            I was a basket case.         A good cry about every day.      Luckily did get some info  eventually but still not sure how I would be.       I was so grateful that I did do well and up walking right away on my own.     Didn't realize I had balance issues till home and doing the outside walking.  I had days of tears still but kind of as a relief mode.           I was back to work in 2 months.       I did have facial paralysis which took a few months but improved.            Little was I to know that in time another tumor was found on my other side and I had NF2.                         Many here will say how the hard part can be later post op when one looks fine and normal and you do not feel that.  Friends and family do not realize and understand how you feel.        The recovery time varies with each person and one can wonder if they ever will normal again.        For most it can be a new normal but one can adjust,again that varies with each of us.     Each of us has a different personality and that plays a part in it al.                               I wish you well in your own AN journey!                     Cheryl R

[Brewers7]

Bluesky,
Are you w & w or will you be having other treatment?  How large is your an?  You have received some wise input.  I suspect that your emotional health may be affected, to some extent, by your treatment plan. For example,  I suspect that those who are w & w may face somewhat different obstacles than those who opt for surgery. I had surgery, and I would agree that there were definite stages of grief.  They were troublesome but not, however, insurmountable. Susan

[MDemisay]

Dear Bluesky,

I am just now recovering from GK, 3 days in and I can honestly say that in 2004, I had a major shock to my system in the discovery that I had an AN particularly because I couldn't believe I was having another brain event! After my surgery was over, you can imagine my shock to discover that it had regrown in 2011. After these 2 events, I went through all of Kubler-Ross's stages of grief most definitely!

I am pleased to say it does get easier, fear not, your solution is coming......Just have to grin and bear it and of course come back often and discuss it as often as you'd like. Hang in there for now! I'll pray for you!

Mike

[CHD63]

Karen F. said it perfectly for me.  Thank you, Karen!

On the first diagnosis 4 years ago, I was in total shock and disbelief.  After I calmed down I began to read and ask questions everywhere I could find.  That was therapeutic for me.  I'm not sure I ever went through angry or denial phases, but certainly in and out of deep sadness.  As Karen said "grief is normal ....."  Maybe that is why I continue to remain active on this forum .....

And as Cheryl said, one of the hard parts is dealing with looking normal (for many of us), but not always feeling normal ..... at least not as we were pre-AN.

Much also depends upon any post-treatment after effects we may be experiencing, as to the feeling of grief.

Just my thoughts .....

Clarice

[Chances3]

Dear Bluesky,

I didn't think grief would be an emotion involving a AN.  For me, I would say I didn't give it much thought, I had three other surgeries in my life totally unrelated, and so I thought now it's my head's turn.  I rushed right into surgery without even coming to this site and learning more even though my surgeon had given me this site's address.  It wasn't until 4 months after my operation that I came to this site to find out why I wasn't getting better.  I'm 20 months post op and I do battle everyday.  I regret not giving CK a better look, but that is hindsight now.  You must be wondering where I am going with this.  Well, I got very angry because the world I knew stopped being normal, and as others have posted here, you can look fine, but no one understands what's going on in the head.  The anger went away when I struggled to go to work and I would walk pass this man who appeared to have had polio at birth.  He was almost crippled and he struggled to get to his job.  I realized I had it better then him, and I should be thankful for what I have.  I also ignored my faith at that time.  If you are a person of faith, I would recommend you turn to God for strength and encouragement.  I would also suggest you turn to your family for your support, they can be very helpful.  The people on this site are truly wonderful people who come here with different struggles, but they all come to the realization that it's worse to wade in ones emotion, it's much healthier to look forward and try to make tomorrow a better day.

God Bless.

[MDemisay]

Well said Chances3,

Ditto to that! Godspeed, Bluesky! Godspeed!

Mike

[Jim Scott]

I believe our reaction to the AN diagnosis is situational and will be affected by our attitude.

I was a healthy, active 63 at the time of my AN diagnosis with no history of medical problems.  Frankly, I took my good health for granted because it had always been the norm for me.  When, at my wife's urging, I finally saw the doctor, had my MRI and received the news that I had a large (4.5 cm) acoustic neuroma pressing hard on my brain stem and that had to be removed, ASAP, I was quite surprised and a bit scared, but not consumed with fear or in any kind of grief.  Being an impatient type that likes being in control, I just wanted to get the darn thing out and get back to my rather pleasant life (I had just retired).  I quickly realized that my having control over this situation was not going to be in the cards as I gave myself over to the numerous pre-op tests and the knowledge that I was effectively helpless to do anything but put myself in the hands of my very capable neurosurgeon and pray.  A lot. 

Long story short: the AN debulking surgery went splendidly with no complications.  The subsequent, pre-planned FSR treatments (26) were uneventful.  MRI scans showed tumor necrosis and the beginnings of shrinkage.  I felt great and life was back to normal.  I prayed some more, this time with thanks. 

Through the whole process, I never grieved.  I felt fortunate to still have good health at my age with none of the usual maladies common to sexagenarians.  I viewed my AN experience as something that was 'fixable' and that I just wanted to get through and be done with.  My recovery was relatively rapid (yes, I pushed it, luckily with no adverse consequences).  I may have felt a bit annoyed that I had this rare growth on my acoustic nerve sheathing but I never grieved, even though it cost me my hearing in my left ear, a loss I have to deal with every day but after all this time, has become part of my 'new normal'.  I freely admit that had I suffered post-op facial or other issues or had to deal with other non-AN health problems I might not have been quite as sanguine.  However, my situation is what it is and as with every AN patient, unique to me.  I do recommend staying as positive as one can when faced with this kind of medical problem.  I did and I'm sure it was a major factor in how I handled it.  That said, we all have to cope with life's problems as best we can, based on our individual situation and personality.  I don't believe grieving would have been appropriate in my case but it may be for others.  I do not presume to tell other AN patients how they should react to their diagnosis.  Frankly, like many, I was somewhat relieved that the tumor wasn't malignant and that, alone, gave me a basis for optimism.  I encourage other AN patients to look forward, as I did, and do your best to take control of the situation.  Of course we cannot control every aspect of the medical situation but we certainly can control our attitude toward what we have to deal with and that attitude can be a hindrance - or a big help.  The good part is that we, the individual, get to decide.  I suggest that we try to choose wisely.

Jim      

[LizAN]

Honestly, I am grieving the loss of my hearing.  Listening to music in stereo was one of my passions in life.  I lost my most of my hearing over a relatively short period of time, and after surgery, what little is left will be gone.  I'm finding social situations difficult. 

I wish I did not have to have this surgery that is scheduled for July 3rd.  But, in my mind, the other alternatives are less desirable.  There is no perfect solution.  It is what it is.  When I'm sad, I let myself feel it for a bit, and then I find something else to do.

All that said, there are people who have it far worse than I do, and I am determined to make the best of the life I've been given.

[Handma1d]

Hi Bluesky,
Your choice of member name in itself indicates to me that you are a "cup half full" type of person! When this all started for me 10 months ago, I woke up one morning to find most of my hearing and balance on the right side had disappeared overnight. It was scary. As I trekked the diagnosis/treatment trail I also noticed I was grieving my losses big time. I realized what was going on pretty quick and scheduled some appointments with a therapist to talk it all out. I also did alot of AN research and sought second opinions from ENT/neuro surgeons and radiation tx specialists. For me it was empowering to gain as much knowledge as possible about my condition and tx options. I spent alot of time in my workshop working on various art projects ( I do concrete sculptures, birdbaths, etc) while playing my favorite music during which time I allowed myself to feel whatever I wanted to - tears often streamed down my face as I sanded and polished my current pieces. I also walked, prayed and sang alot with my dog! : ) I must have looked a tad eccentric wobbling through our neighborhood trying to work through the vertigo, figure out what sounds were and where they were coming from while singing out loud to my dog, but who cares, eh?
It really helped though. As I watched spring arrive this year, I noticed a certain mock cherry tree blooming during our daily walks. The tree trunk had forked at the base into two separate trunks; the main fork was deadwood while the smaller fork was alive with bright pink blossoms. The tree seemed to be the perfect example of what I was feeling at the time - like I had lost half of myself. In my grief, I saw myself as the deadwood fork. One day it occurred to me that I was mistaken. I was like the blossoming trunk - surviving to bloom again in spite of what had happened to the other trunk. On that day I realized that I would be just fine, no matter what the future held for me with AN. After that I committed myself to getting as ready as I could, physically, emotionally and spiritually for my up coming surgery. Today I am 3 weeks post-surgery and doing better every day. My dog and I are back on our daily walks and although I still am working out what to do with sounds/stimuli and am still a bit wobbly while my left vestibular nerve learns the ropes, I feel good about myself. I did what I could with what I could control and turned the rest over to God. Hope this helps in some small way. I'll send positive energy your way daily! Hang in there, Bluesky!!!
Peace,
Diane

[It is what it is]

Diane,  thanks for sharing your process.  Lovely and hope filled.

[CHD63]

Diane .....

What beautiful imagery!!  We can all learn a lesson from you on how to deal with our grieving!!  Thank you so much for sharing that.

Clarice

[LizAN]

I agree with Clarice!  Beautiful, Diane!

Liz