VAPID Lapid, Yo

[misskittycat]

Lots of dust and hugs, VL. I have my fingers crossed that the surgery goes well and I hope you have supportive people around you that can help and be there for you. I know when there are health issues with my husband it is so scary.

 

[AGBF]

Good luck today, VL.

Deb

 

[missy]

Vapid, good luck to you and your SO . I hope the surgery goes well today. Thinking of you both and sending many hugs and healing vibes your way.

 

[mary poppins]

Thinking of you and your SO today, VL, and sending strength and healing vibes. I hope all goes even better than expected.

 

[rainydaze]

Thinking of you and your SO today, VL. Hoping with all my might it goes, and goes well. And that someone at that hospital shows you kindness and compassion.

 

[TooPatient]

VL -- Sending you lots of hugs and healthy thoughts. I hope your SO's surgery goes well.

 

[missy]

Vapid, we are all thinking of you and your SO and hope the surgery went well yesterday. Sending more healing vibes and good thoughts your and your SO's way. And (((HUGS))) too.

 

[VapidLapid]

Thank you all for helping me not fall apart!
Yesterdays surgery started 2 hours late and lasted six hours. They removed nearly all of the tumor. The remaining portion that impinges on the nerves that control the right eye muscles they left, to radiate later. SO was a very bad patient, complaining, demanding to have nearly every pillow and blanket in the hospital, along with the ones I brought from home. Saturday she became agitated and combative, trying to get out of bed saying to let her out she was going to go outside and throw herself in front of a taxi and if they wouldnt let her out she would break her neck right there in the bed. Well they called a psychiatrist, and she has had her own personal observer 24/7. They even escorted her to the O R. yesterday after surgery Dr Psych visited again and the first thing out of her mouth was that she was going to kill herself and that there are three people she would take with her. But she also said, pay no attention to the man behind the curtain! I called the nurses station last night and they told me she was saying that if they didnt let her get up and throw herself in front of a taxi t hat she was going to run around the icu naked. So they gave her 50 fentanyl and she went to sleep. I am beginning to worry that when the release her they will immediately admit her to Psych. I told them it was all just hyperbole and the pressure from the tumor, and the drugs, that she doesn't mean these things.

 

[Dee*Jay]

VL, I'm so glad to hear the surgery went well (under the circumstances). The things your SO are saying are just heartbreaking, but I am hopeful it is just the medication and the current conditions driving her to that point and once things improve that will all stop.

Biggest hugs outgoing to you and your partner. We are here for you.

 

[luv2sparkle]

VL, big hugs to you and your SO. I hope as she heals from the surgery a bit she will be feeling better about life and you will be able to get some much needed rest.

 

[Jambalaya]

Oh, VL. If I could send you a guardian angel to walk beside you during these terrible times, I would. It sounds as if your poor SO is being driven to despair by being so ill. What can I say? There is nothing to say, except that things, eventually, will get better for you. I know that's hard to believe, but they will. And you are proving yourself a special person with the way you take care of her and have done so for a long time. You put her ahead of yourself, which is quite something in these self-absorbed times we live in.

I know this is so much easier said than done, but try to take care of yourself as best you can. During my own caretaking times, I have not done so, and it took me a long time to get back to previous levels of health and healthy habits. It wasn't as easy to bounce back from the strain as I had thought, so I think it's worth it to take that walk, have that early night, cook that healthy meal, etc.

Like all of us on Pricescope, thinking of you xxx

 

[smitcompton]

Hi,

VL. the cancer is spreading and I think it may be time to look into hospice care. If the two of you are not married who can give directives? She is not being a bad patient, she is suffering. Why should she go quietly into the night? I don't think you can manage this at home anymore by yourself. Please speak candidly with her doctors and ask for help if you need it. My heart goes out to both of you.


Annette

 

[junebug17]

VL, I'm glad to hear the surgery went well but am so sorry about your SO"s distress and suffering. It is very stressful and worrisome for everyone. I share Annette's concern about you caring for your SO by yourself at home at this point…depending on the prognosis, hospice might be an option, or perhaps a home health aide to at least assist you. I can't help but feel you're going to need some help. I truly hope her mental state improves in the next few days. My heart goes out to you both, will continue to keep both of you in my thoughts.

 

[24caratsequin]

My thoughts are with the both of you. Take care of yourself.

 

[Jambalaya]

Stage IV breast cancer is very complex - for example, some people live relatively normal lives for quite some time with it controlled in their liver, lungs and brain. We can't know the ins and outs of his SO's situation so I'm sure VL will take advice from the doctors. Also, I think VL wrote in this thread that his SO is now in hospital for 28 days, so he gets a break of sorts for the time being anyway.

 

[junebug17]

I think VL wrote in this thread that his SO is now in hospital for 28 days

I missed this…VL, I hope SO shows improvement during this period. You certainly have some time to see how things go…hang in there and take care of yourself, sending lots of healing dust and positive vibes your way.

 

[missy]

Hi Vapid, thank you for updating us. I am so sorry she is in such a terrible state but grateful she made it through the surgery and that is went as well as it could have. I am continuing to keep you in my thoughts and sending love and healing vibes to you both. I'm here and you know how to reach me if I can do anything for you.

 

[TooPatient]

VL -- Glad they got most of it out. I hope your SO finds comfort as she recovers from her surgery. Continuing to send you lots of hugs and good thoughts.

As a separate note -- I'm not an expert, but did work in the financial industry for some years. The saddest part of my job was helping people deal with setting accounts up to make the estate process easier whether married or not. If you ever have questions I would be happy to do my best to answer what I can.
Very useful stuff: individual accounts can be set up as transfer on death and you assign a beneficiary just as you do with a retirement account. Most documents are valid and in full force UPON SIGNING. Keep copies of anything you send to accounts and the date of signature is the date this stuff takes effect. (not the date it is officially processed as that can be some weeks later)

Please know I'm hoping for the best for you and your SO. I hope the doctors can get her comfortable and she has more happy times ahead. Just sharing this as I do with anyone who has a loved one going through so much.


Sorry for the side track there.
Big hugs to both of you. I think of you both often and wish you both comfort and happy times.

 

[AGBF]

VL. the cancer is spreading and I think it may be time to look into hospice care. If the two of you are not married who can give directives? She is not being a bad patient, she is suffering. Why should she go quietly into the night? I don't think you can manage this at home anymore by yourself. Please speak candidly with her doctors and ask for help if you need it. My heart goes out to both of you.

I may be the only one who is reading your posting this way, Annette, in which case I apologize. But I am "hearing" you lecture VL, which, in my opinion is the last thing he needs. As I said, this may just be the way I am reading it.

VL is one of the most brilliant men it has been my privilege to meet on the Internet. He knows the cancer has spread. He and his SO have sought care at one of the finest, if not the finest, institution(s) in the world to provide cancer care. I am sure that the oncology team working with them has discussed Hospice and homecare options. That does not mean that we cannot tell him about our own experiences. We members of Pricescope often share stories about our own experiences. I do think that it should mean that we recognize that while VL may be in turmoil and not know what to do, that he still has the wherewithal to work through his decisions himself. He may just need our support as he does this.

Deb/AGBF

 

[iLander]

^^Agree with you, AGBF. +1 for sure.

VL- I'm so glad they got so much of it out, that is excellent news.

I did want to bring up the medication issue again, morphine specifically. My MIL had a bout with breast cancer, that metasized after 30+ years of remission, it ended up claiming her arm and part of her trunk. During the ordeal, she was on morphine, and it wasn't an issue at first. But after a while, she grew combative and mean. She hallucinated that I had called her and said rude things. She claimed the nurses were stealing from her, she phoned us at all hours, hysterical. She was out of her tree. This was a sweet little old lady, in her mid-80's, that they were considering restraining. DH and I felt strongly that morphine was the issue and had her switched to something (wish I remember what!) and within 3 days she was back to her old self, with ZERO recollection of any of it. Back to her old self. It was just the meds talking.

PLEASE ask about another pain med. It's worth a try.

DON'T let them put her on Tylenol with Codeine, it has just as many weird mood effects but it can also damage the kidney and liver very quickly.

Big hugs to you, VL, you are doing everything right. None of it is easy, and it sucks in new and novel ways (trying to lighten a little), but you're doing great. Everything is going to be okay. Just breathe, go slow. You're doing fine.

 

[smitcompton]

Hi Deb,

I'm not lecturing VL at all. In light of the recent events I thought that it would be very difficult for /vL to take care of his SO. I suggested talking to her doctors and perhaps hospice care was in order. Only a doctors order can allow an individual to participate in the hospice program, of which, at least in my state, is offered in home care and/or the same care in an independent facility.

No matter how smart people are, in trying times they may overlook some options. I can't see my post in any different light than Ilanders asking him to check the meds.

As for sharing our own experiences, i have been on both sides of this fence, right up to having been evaluated by shrinks, when i was suicidal and in so much pain I was unable to function from terminal cancer. I had a son who had cystic fibrosis, who i lost and where i still have the physical scars from years of taking care of him. But this is not about me, nor do I think that anyone must go thru these crisis to understand what VL might be feeling. Each of us expresses what we think VL might need, and hopefully it helps.

More than being smart, I think VL is a truly nice man. He can use the suggestion or not, as he wishes.


Annette

 

[VapidLapid]

First and foremost thank you again for all your thoughts, wishes, prayers, anecdotes....my dust-bag is non-denominational!

Secondly, and by that I mean firstly, Today, only two days after surgery was sooooo much better. SO is attentive, talking all the time eating, laughing, remembers everything from the ER to last week to three weeks ago to five months ago to....well everything.
She walked a little today, was scrupulous about everything they told her, and never spent a moment without at least two visitors, except in the bathroom.

The nurses and doctors are impressed and the psych doc was too. He has expressed to me his understanding of the linguistics of advanced cancer, aka torture.

I assure all of you that after 4.5 years of managing this situation, having been to EVERY doctor appointment (after all, I made them), having set up our health insurance to be the most comprehensive there is, and having researched every aspect of these diseases and treatments that they have told us, read all the studies and clinical trials, (I am a subscriber to Nature for +20 years) I am pretty on point with my understanding of where we are, what SO is going through, and what the doctor's perspective is; and the doctors tell me so all the time. Further I still have my appropriately irreverent sense of humor. Yesterday a doctor was talking to me very honestly about the current condition. He said that with the cancer in the occipital bone and other areas of the skull such that the nerves/muscles that move the right eye are physically impinged by the cancer, they eye that is being distended will likely never be able to track (move) again. The optic nerve is fine but the eye cannot follow a moving object. He said she would only be able to turn right. I said to him, " so basically, you're telling me she is now Zoolander." I thought he was going to piss his pants! But instead he said, "well, she will never again be an ambi-turner"!

Sometimes a person's style in delivering some considerations may seem harsh to some. Enough that the effects of the style may appear to overshadow the message or intention. SmitCompton, I know you meant only to give sound advice wrought from experience. I thank you for being brave and sharing that with me. We have known profound and unspeakable heartbreak.
AGBF you are a great friend to speak up for me. The truth is you were right. On first reading I was a little taken aback by sc's post. I did think, who is this who can know the disposition of another's state of health through heresay on the internet, and bluntly impart the dreaded direness? But, I re-read it trying to find another kind of speech, which I found to be a pained wisdom bought at too dear a cost.
Fortunately for SO and me, there are differences in our situation, regardless how small. Yes, SO will die. But it will not be today. The same is true for most everyone. We have thought about the issues of hospice. I personally prefer the idea of home hospice, as I do not like the idea of going off to die in some cold and lonely place, and I like the idea of passing comfortably, if not peacefully, in a place I know well and feel secure and loved in.
SO has come through this terrible squall, and yet the storm will win. But for the time being she still has fight in her, and is enjoying the spoils of this latest battle with laughs and happy reminiscences, to die another day.

Now, I would appreciate it if there is no further discussion, or even mention in this thread, of the smitcompton vs agbf "discourse" unless it is going to be settled in the Octogon! If there is I will ask the mods to delete the entire thread.

From the step down floor she is in, SO will be moved to yet another less intensive floor, and from there go to either acute, or sub-acute rehab facility. From there she will come home. I need some time anyway to make the place less of an industrial arts environment, despite that having been the reason we are here so many years, because rehab is likely to come and assess the home environment for dangers. Note to self: move the gallon jug of nitric acid from under the sink to the basement. Get linen damask cloths to throw casually over the table saw, band saw and drill press.

 

[Calliecake]

VL, It warmed my heart to hear your SO had a good day and that she laughed. I'm sure that must sound like music to your years! Thank you for taking the time to update everyone here. I will continue to keep both of you in my thoughts and prayers and am sending more healing dust to your SO! Everyone should be so lucky to have someone like you in their corner.

 

[minousbijoux]

Nothing but support here. Whether or not you can feel our wave of love, energy, dust, thoughts and prayers, it is always here. It will continue. We are here. Unimaginable suffering, pain, frustration and grief. Do whatever it takes with no judgement on SO or yourself. You will not be the first partner to come unglued, nor will you be the last. You sound rock solid. And loving - really really loving.

 

[TooPatient]

VL-- Wonderful update! I am so glad she is doing so much better. She is lucky to have someone as capable and awesome as you. Continuing to send you both lots if hugs and continued healthy thoughts.

 

[arkieb1]

I am glad that she is doing better!!!! I have had one close family member die of lung and liver cancer and another two die of dementia over long periods of time in nursing homes. My father in law has been managing bone cancer for a few years now. There are no right and wrong methods to deal with sustained illnesses like these.

I admire your courage, and your determination VL, the fact you are a wonderful, warm, intelligent, and caring person comes through in all of your posts. Ongoing dust and hugs for you and your partner.

 

[rainydaze]

Count me among those who are uplifted to hear that your SO came through surgery well, and has found laughter after a frightening and unbearable turn following it. Your strength, love, compassion, and humor are inspiring. Continuing to keep you and your SO in my thoughts.

 

[junebug17]

Thank you for the update VL, so very glad she is feeling better!!! Continuing to think of you both and sending thoughts of comfort and strength to you.

 

[Jambalaya]

I am so happy to hear that she is feeling better. That's great! It's just amazing what medicine can do these days.

I have a relative in my distant extended family at the moment who has breast cancer which spread to her brain last summer, but she had surgery and radiation and is doing well - working, traveling, etc. I hope your SO has many more good days ahead of her, too.

Hugs, good thoughts, and positive vibes to you both xxxxxx

 

[AGBF]

I am so very glad that your SO is doing so well after her surgery, VL. Your optimism in the face of what you have been through is awe-inspiring. Although one of my cancer stories has a bittersweet ending, because my friend lost her battle with ovarian cancer in the end, she had a very good run. When she was diagnosed with Stage III or IV (I do not, now, recall which) her physicians told her if she could stay alive for five more years they would have a cure. It did not look at all promising to any of us as she went through very, very radical surgeries in her 70's followed by rounds of chemotherapy and was widowed shortly after the diagnosis. But she was very healthy and able to travel and teach when she was in remission. At the five year mark she said to her doctors, "Well I did my part!"

She gave herself a wonderful 80th birthday party in her own, beautiful home where she had been able to remain. She and a male guest took turns playing the piano and people sang. When she eventually died, she had lived eight years past her initial diagnosis, which had given her a very short time to live.

Treatments get better and better and better. As you said, everyone dies sometime. You lost Murry. When I lost Biscuit I swore I would never get another dog. They die. But we cannot stop the way things are or stop ourselves from being mortal. We have to make the best of what we have. You have done so beautifully with this calamitous illness. Give your SO a gentle hug from all of us on Pricescope! And of course, hugs to you!

Deb