Helena,
The floodgates opened as soon as I started reading your very over the top sad posts. Unfortunately, you and I have way too much in common, the only difference is you have been suffering through all this pain longer than I have. Even though Bob was diagnosed with Diabetes in 2015, and had a major heart attack on February 3, 2009, it wasn't until the beginning of 2015 that his life began that long downhill slide, accelerating during the last year of his life. It SUCKS!!!, TUTTAM!!!
Although I didn't realize it at the time, I hadn't heard of anticipatory grief, I'm positive I suffered from it in silence, hiding this almost unbearable pain from everyone. The only thing that mattered to me was getting Bob the very best medical care I could find. I was on a mission. Backing up briefly, I now believe I suffered from anticipatory grief beginning at that dreadful moment, right before Thanksgiving in 2016, when the poor excuse for a doctor!!!, TUTTAM!!! (I'm being nice here!!!), the one who had misdiagnosed Bob incorrectly and had been telling us not to worry for the past year, with one hand already on the door knob, gave us chilling news: Bob had advanced kidney cancer, it had spread to his lungs, his vena cava, and was going to have to have emergency surgery ASAP!!! to remove one of his kidneys. This "doctor," I have a really difficult time calling him a doctor, said that the surgery was going to be a very difficult one, and it would require the assistance of one of his colleagues. He told us to stop at the front desk to schedule the surgery before leaving. Without giving us a chance to ask any questions, he told us to have a "Happy Thanksgiving," and walked out the door.
WTF???!!!, a Happy Thanksgiving???!!!, this "doctor" was one of the most heartless individuals Bob and I ever met!!!, TUTTAM!!! I fell apart inside, but stayed strong for Bob, who in typical Bob fashion, said we would get through this together, and told me not to worry. Bob couldn't accept that this was really happening... Right then and there, I knew Bob wasn't EVER!!! going to go back to this "quack in a box". I realized I had a lot of work to do. I had to find real help for Bob ASAP!!!. The timing couldn't have sucked more, right before Thanksgiving, in the middle of the holiday season.
Very long story, made very short, I managed to find the most wonderful nephrology practice at UPMC (We were living 30 minutes outside of Pittsburg at the time of Bob's diagnosis.) I remember crying into the phone, I don't know how the over the top kind front desk assistant could understand me, but she did. She not only understood me, but put me on hold, while she called the head of the practice, one of the very best nephrologist's in his field, also one of the most kind, and compassionate people in the entire world (Her words to me.) I was on hold for about ten minutes, but it seemed like hours. Then I heard her voice, I was in disbelief as she asked if we could meet with this nephrologist before his regularly scheduled office hours in a couple of days. I don't remember exactly what I said to her, but I remember thanking her over and over and over again, still crying, but this time feeling a tiny tinge of hope, mixed in with all the tears.
The nephrologist was everything his front desk assistant said he was, plus more. He made Bob, not having ever seen him before, in spite of his busy work schedule, and Christmas being right around the corner, his top priority. He said he wanted a specific team of specialists to be present during the surgery and somehow, managed to reach all of them, some already on holiday vacations. He said in a perfect world, the surgery would happen the very next day, Bob would have been admitted to the hospital that very second. However, because it was going to be such a complicated procedure, and some of the specialists he wanted on his team, were on vacation, the surgery had to be postponed until December 27, 2016, his colleagues were returning to work on Monday, December 26th and they would spend most of the day in meetings, discussing the very best and safest way to remove Bob's kidney, plus go over his extensive medical file with a fine tooth comb.
I think I've already "talked" about the rest of this miserable journey, so won't go into detail here. Briefly, Bob miraculously recovered from the procedure, and did very well on the new medications his new team of specialists prescribed. Life was good, in spite of Bob being weak and tired, needing frequent naps, but he regained enough strength so we could still do all the things we loved to do together, just in moderation. All was good on the surface, but underneath, I was terrified..., so scared of the future..., I was so sad..., the saddest I've ever been up to this point in my life... On the surface, I was the Deb Bob knew, being as cheerful as always, being over the top optimistic while I was around him, but over the top sad..., terrified..., when I was alone. I always loved the good feeling I got from exercising, but it was during this time, that the gym became my very best friend. I was able to sleep because of how hard and long I worked out. I was probably in the best shape of my entire life on the outside, but as we know, what's on the outside can be super deceiving...
Towards the end of 2017, when Bob was had to stop working, we made the decision to move. Bob was over the top excited about our upcoming move. I shared his enthusiasm on the outside, but inside, I had a nagging feeling something really bad was going to happen if we moved. Anticipatory grief hit me super hard, harder than usual, but as always, I hid it, concentrating on all the zillions of tasks necessary before a big move. We moved. Bob's health began it's rapid downhill spiral. I had to scramble to find a new team of specialists for him, but in this part of the country, especially in my small corner of SC, the standards for quality heath care are so much lower. It SUCKED!!!
Unlike you, at the time of Bob's death, although I was alone physically, I had all three of our children on the phone with me, from soon after that horrible moment when I had to call an ambulance for the very last time, right up until the next morning, when I had to return to a house that looked like something out of crime scene, alone... Blood everywhere..., mud everywhere... towels sheets everywhere... pillows everywhere... throw pillows from the couch, still in the same place they were when one of the EMT's managed to get it underneath Bob's head... the hinge to the linen closet door knocked off from the force of the EMTs, firemen opening the door, to grab whatever they could use, to get Bob off of that over the top tiny bathroom floor, and onto a stretcher for his final ambulance ride. I can't imagine having to go through all of this, without my children remaining on the phone, doing their best to comfort me, in spite of the over the top pain they were in too. It also helped knowing that two of my children had booked plane flights and would both be with me within a day. The oldest, who lives out of the country, couldn't get a flight due to COVID restrictions. My heart is breaking for you... No one should EVER!!! have to be alone during the very worst moments of his/her entire life!!!, TUTTAM!!!
I can't stop crying... thinking about everything you had to endure alone... thinking of everything we both went through... It SUCKS!!! The words just seemed to type themselves as I was "talking" to you, taking me by surprise. I had no idea that I still needed to "talk" about this, some of the most very heartbreaking moments of my life... I'm emotionally and physically drained and I thought I was done going to this very dark place, and I'm so over the top sad knowing that, for you, all of the most horrific moments of your life... happened so recently. I can feel your pain... I'm so very sorry.... I wish so much we lived closer together too. All I can do is give you the BIGGEST virtual hug ever..., I "get" it. It SUCKS!!!, TUTTAM!!!
I want to end this on a more positive note. As sad as I am right now, I'm going to kick Mr. Grief so hard, he WILL!!! be unconscious for the rest of the day. I'm finally at the point in my journey (for lack of a better word), where I can follow Gary's excellent advice, "the secret to life is everything in moderation." I know you aren't at this point (yet), and that the timeline for healing is different for every one of us, but I believe you WILL!!! get to where I am now, in your own time, it WILL!!! happen. As I think I said to you the other day, you're doing all the very hard work grieving forces us to do!!! You are a true GW!!!, TUTTAM!!!
Wrapping you in zillions more hugs and love, wishing you peace, all of us peace. DEB
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