Dealing with Bad News

[JustKeepTrying]

Today I got some horrible news.  I have to undergo the surgery that I had two years again.  Major massive very invasive surgery that has a 50/50 outcome this time. The surgeon thinks it will work next time.  According to my sis who works in the field in another part of the country, this is not unusual.  She has had patients who had to get things redone and it is usually because they had chemo or radiation in the past.  I've had both.

Here is the kicker, I'm going to have to move.  I am looking at an intense year-long plus recovery and I can't do where I live now.  I had hoped to be traveling in a few months but now I have to push it back at least 18 months before I will be fully on my feet again.  LIterally.

All-day I could hear my xOCPDh in my head questioning me - did I ask this?  is this legitimate?  can I afford that?  am I thinking this through?  I had a friend with me and I kept asking her over and over - am I thinking this through?  what questions haven't I asked?

She was reassuring and she has a history of an ex with PD so I felt comfortable with her.  Within 8 hours I had a plan in place with her help and I think it will work.  Expensive - yes.  But this is why I saved the money.  My accountant says I can do it and I will be OK.

But inside I am dying.  I was so close.  Freedom was just there and I am really struggling with staying in the same geographical area where I lived with my ex and decades of abuse.  I really wanted to start over.  In another place with different air, views, and people.  But I have to be here for another 18 months.  In a long and painful recovery.  Did I mention I can't pain meds?  Yup, all of this will be on Tylenol.

I trying to see the upside.  Perhaps it is the time I need to grow stronger mentally and physically.  Perhaps it was never to be and I should be happy with the six weeks I had.  Perhaps it is what it is and I need to put it all in God's hands and let him worry for a while.

Or maybe the world is just shit now and I feel sorry for myself.

All I know is that I got to get his voice out of my head and deal with this realistically with self-confidence.  Somehow.  Someway.

Ok, there is an upside.  They don't think it's cancer returning.  No signs of tumors yet.  So that is a definite plus.  It is life-changing, not life-ending.

[Amadahy]

I am so sorry for your news, JKT!  I think there are some glimmers of hope there, for sure, but to have your hopes dashed is painful.  You've been through this before, so you know what to expect .... just try to have small steps/goals in mind to help the days pass meaningfully while not overdoing it.  You are in my warmest healing thoughts. 

[Free2Bme]

Oh Justkeeptrying, I am so sorry.  I can understand why you feel as you do. 

You don't have to cancel your plans to move, think of it as only a postponement.  Still frustrating and disappointing, but keep the door open in you head.

Stay in the here and now so you can focus on your recovery and put the things you cant control in God's hands. 

Have you scheduled your procedure yet?

[escapingman]

I am sorry to hear you bad news, I hope it all goes well with the operation and that you can live out your dreams as soon as possible.

[SonofThunder]

JustKeepTrying,

I so sorry you have to undergo another surgery and long recovery. So glad to read there is no sign of tumors! 

Could the outcome of "the surgeon thinks it will work next time" be a potential catalyst for an even greater experience in your future travels (vs previously planned travels) after recovery from a second, more successful surgery? 

Would you be able to use this next recovery period to bolster/expand your travel ideas and possibly extend or enhance your future travel plans because of the potential success of a second surgical event?   

I will have you in thought and prayer.

SoT

[Worthy of Care]

JustKeepTrying, I'm so sorry to hear your bad news. All of your feelings and swirling thoughts make a lot of sense.

[Boat Babe]

That's a bummer JKT. Your strength of character is just shining through though and, although really difficult, you will come out of this an even more amazing person. But it still sucks for now. You have got an international team of people here,  rooting for you and here for you throughout this. Still sucks. No advice but buckets of love to you ❤️❤️❤️

[1footouttadefog]

Wow this is a major thing, sorry you have to endure this all. 

Maybe you can move and recover in your new location if things go well. 

I am glad you have a plan that works for you.  I hope things go so splendidly and you consider the 18 months well spent in the future looking back.

[square]

Damn. This is a lot. The way you just keep chugging is inspiring. You may say you have no choice but people don't always rise to the occasion and you are. It's a lot, though, and I can only imagine the dread, sense of loss, and exhaustion. Happy to hear you have a good support.

[JustKeepTrying]

Thank you everyone for your support.  I am so grateful for all of you.

As of right now, the surgery hasn't been scheduled.  I had more scans and the surgeon is working with the hospital on scheduling the surgery.  The whole system where I live is overloaded and most surgeries have been pushed back months.  In essence, they are replacing my leg.  I am praying there is enough bone to attach to and if not, that the surgeon has other ideas.  He is tops in his field so I know I am in good hands.  I hope I don't have to wait too long.  The pain is awful and I am living on the second floor in a wheelchair and can't leave.  I do have good friends who are helping and I am so grateful for their support.

Candidly, I am terrified.  In the past, my xOCPDh was there.  He was great in an emergency and I could rely on him during those moments.  Of course, it never lasted long and most of it was for show.  On the upside, I am learning that I can do this on my own.  I have drafted a list of questions; found a better place to live that accommodates wheelchairs; arranged for moving and all in a day.  I think I got this.  I think.

Also on the upside, my DDs have called and we have had long frank talks.  Really good talks.  Perhaps we are turning a corner in our relationship.

I am thinking a lot about my past 32 years with my ex and my life growing up with an NPD sister and an alcoholic mother and brothers.  My father had NPD tendencies and my paternal was most definitely BPD.  I think that 56 years of constant exposure to these disorders with nowhere to go for reprieve and no real tools to deal with them or awareness of them has taken a real physical toll on my body.  Cancer, immune disorders, and more.  Embodiment of The Body Keeps Score. Yes, I am Out of the FOG and taking steps further and further away.  Creating a world of peace.  But tonight it feels like two steps forward three steps back.  Pain itself is tiring.  It all really wears a body down.

Tonight I feel like a cautionary tale.

[square]

Again, that is a lot. I wish we could lighten your load.

Due to something that is probably ME/CFS I've experienced low level chronic pain in the past. I've been amazed how even low level pain is so consuming. To imagine greater pain than that, well, I just can't. I'm just intellectually aware that it is a really big thing. I am hoping your future at some point will include less pain, of all kinds.

[SonofThunder]

JKT, i will mirror square.  I wish i could lighten your load.  So sorry you are having to go through major surgeries on your leg and deal with strong pain. 

I have autoimmune disorders, pinched nerve pain in my lower back, groin nerve pain and now joint pain with the beginning of psoriatic arthritis, to which i may be medicating soon to stop joint destruction, but regarding longer-term physical pain, thats all I have experienced.  I feel for you so much in your great pains, and so sorry its awful to endure.  I will be sending thoughts and prayer for reduction in pain and resolution.   

Like square stated, even lower level pains can dominate oneself and that stinks. Im sorry you are facing this, but proud of you for the inner strength, planning and self-confidence you are displaying, as this time around is different for you. 

Im also happy for you, and your DD's, that your relationship with them is improving.  Yay!! Thats fantastic and timely as well, as you face into the headwind of future surgery, but also the future joy of travel after recovery and continued relationship improvement.  All the best to you  JustKeepTrying.  You surely embody your screen-name. 

SoT

[1footouttadefog]

I will pray that all goes well and that you will be restored beyond what you can imagine.

[JustKeepTrying]

UPDATE

I had hoped to avoid surgery - just a small hope and prayer - but I talked with the surgeon today and I can't avoid it.  Well, I could but I won't.  It's going to be a long recovery but not as bad as last time.  All good news.  He said he is going to take a bit of my hip and the stem cells within and that should promote bone growth.  This is all good news and looks like I have a definite shot at keeping the leg and walking again.  Yipee!

As I sit here tonight in the dark and quiet of my apartment, I realize how at peace I am even with this awful turn in life.  I am not stressing about the move, the money, the insurance, the surgery overly much.  I have a plan.  I have triple-checked the plan.  I talked with smarter than myself about the plan and everyone agreed it's a smart and necessary move.  So a good plan.  it has occurred to me that if my xOCPDh was here I would be spending my time worrying about him and how he would cope.  Wheeling around my split-level family home worrying about food prep and laundry and cleaning so he could cope while I was gone.  Then I would be feeling guilty and grateful that he stayed with me and guilty about the money.  Just layer upon layer of stress and eggshells in a very complex swirl of emotion that never abates.

But I don't have that now.  I moved through the rough part of diagnosis and now I am looking forward to my new place where I can wheel around and take care of myself in a safe and productive way.  I can heal and get strong mentally and physically.  I had never realized the sick kind of gratitude that a disabled person has towards their partner that can be manipulated - like I'm supposed to be eternally grateful you stayed with me while I was sick.  And he worked in so many subtle ways with passive-aggressive comments.  A real mind f*&k. 

So now, sitting here and reflecting on what could have been happening,  I am ready for what will happen.  What will happen is that I will pack my stuff, throw stuff out that I don't need, organize as I see fit, prepare for the surgery and after stuff and work hard towards a life of freedom.  I think I am one step closer to true healing.

[SonofThunder]

JKT,

So glad for the better news you received!  🙌🏼   Im just reading your last post over again and soaking up the optimism and comparative insights you are having 🤛🏼.   You are a powerful, confident and enduring woman and and i look forward to reading about your progress, all the way into, and beyond, when you finally hit the road in your travels. 

Will be continuing to lift you up in thought and prayer.  You go girl!

SoT

[1footouttadefog]

I am glad you are at peace with the big challenge ahead.
Isn't amazing how it seems doable and perhaps more so than facing the mind job, and PA comments etc.

Stay strong, stay you.

[JustKeepTrying]

Update:

Day One of the move is over and the really strong guys come tomorrow and it will be done.

Surgery is still not scheduled because we are still in a surge here and all surgeries have been put on hold.  Frightening and I am doing all I can to protect the leg but at the end of each day I am exhausted from the pain and effort.

I hadn't realized how bad it was until the end of the move today.  I haven't had a cPTSD seizure/aphasia in more than two years.  But today as I was getting on my coat; temps in the single digits and preparing to wheel myself out of the new apartment - a seizure struck.  My friend and her husband had to hold me down as I almost shook myself out of my chair and onto the floor.  It was half an hour before I was stable again and I was in tears by the end.  Her husband had never witnessed one before and I know I scared him.  My friend had and she knew immediately what to do to keep me safe. 

I went through all that drama with my xOPDh and a few hours of moving does me in.  It amazes me how the body responds to stress and when it does.  I had no idea it had been building and it came on so suddenly.  When I was married I had four or five a day and my ex would essentially shrug his shoulders and walk away.  It was up to me in the midst of a seizure to keep myself safe.  And then I would feel so grateful he was still married to me.  Head spinning.

Tomorrow I will be moved in and safe in a one-level place designed for wheelchairs.  I am hoping I can continue to heal emotionally despite this setback.  Hoping that surgery is scheduled soon so I can get my life in order.

[square]

It was really hard to read about his cavalier response to your suffering.

It must have felt so hard to go through that again today - well, thankfully not the part about the ex, but the seizure itself.

There are things like seizures and pain that, if you qre lucky enough to have them improve, you get used to the improvement almost right away because it never felt normal or right or natural or okay. The improvement is how things SHOULD be.

And then to have even just one more seizure or bout of pain or increase on the pain scale, it can be - panic inducing, I think. Triggering, maybe.

Don't worry about scaring the friend's husband. He's okay. He is just a normal, feeling human being who is affected by someone's suffering. I'm glad your friend could help you.

[SonofThunder]

JKT,

Im so sorry to read you suffered the return of a seizure.  I agree with Square; it was difficult to read about your xOPDh's past reaction, and that the reaction of your friend and her husband was compassion ; a normal person's reaction.   Again im so sorry you  had the experience.  Looking forward to reading about your successful move to the one-level residence.  Thoughts and prayers for you along this journey. 

SoT

[1footouttadefog]

I am sorry that you suffered this.  I would not say it's a setback.  You are moved and that was a step in your plan.

It took a toll yes, but you are moved and in a place that will optomize you for next steps.

These are big challenges most of us would not see, be kind to yourself.  IF Your body is reacting, so be it.

I am sorry there is a delay in surgery schedule.  I hope healing takes place so much faster afterwards.

Stay strong.