I hate cancer no kidding...
I know I won't get all my dates right on but I need to catch up on the latest before too much more happens.
Last Thursday 10-2 we had to go to the Emergency Room at the hospital because Richard was having chest pains on his left side. They did blood work & a CT scan. His oxygen level was low so they put him on oxygen. I know nothing about this oxygen stuff except that they took him off it when his readings were in the 90's. He had that plastic thing on his finger & it gave a reading on the monitor.
They ended up admitting him overnight which was useless because they didn't do anything or figure out where the pain was coming from. They couldn't even control his pain till 3 a.m. the next morning, it was horrible. I was so exhausted. This just sucks the life out of me. I can only imagine how he must feel. I feel guilty about complaining myself.
They release him & the guy from hospice visits us before we are discharged & say he is not ready for hospice because he is not actively dying. I couldn't believe it. He is terminal, with uncontrollable pain! The nurse & doctor did not want to turn over the results fom the blood work or the CT scan but finally did.
The scan showed his cancer has now spread to his liver & lungs. We now have hospice, because his primary care doctor got so mad at them. This is the only reason we can figure the pain is from - the cancer in his lung. There is a complicated explaination about fluids & sacs around his lungs but I can't remember it all. I'm overwhelmed.
So they have put him on Oxycodone to control his chest pain, that seems to be the only place he hurts & it is usually in the morning. We have morphine for the real bad pain. I stopped the Cymbalta which was for neuropathy because he was having nighmares & tremors besides he says his tingling has stopped. He has put off the oxygen for now. The nurse with hospice said he could have it here at home if he wanted.
God, I am so terrified. He is slurring his speech & sometimes makes no sense. Is he dying before my eyes or is it just the drugs? Any ideas?
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Oh My!
I'm so sorry you are going through this. Paramount however you get the pain under control. Oxycodone can cause psychosis, so if he continues having any problems like that, ask them to change his pain med. Don't keep the morphine from him. There are lots of people who are new to this, that have issues with narcotics and addiction. You have to change your point of view on that and make sure he is absolutely comfortable physically, its critical. My mom died of cancer and people who haven't gone through it would be appalled that she was on percocet (she experienced psychosis with the oxycodone which is percocet long acting - weird, but not uncommon) so much and would say, "Oh my god, she'll get addicted!" I'm like, "she's dying for christ's sake, addiction is not a concern."
On the numbness. Here is what you can do instead of the Cymbalta. You can ask for gababentin (generic version of neurontin and a very safe drug). If you prefer a more natural non drug approach give him 600 mg of Alpha Lipoic Acid 2x daily and can go as high as 2400 mg daily. Its an antioxidant and is being used by oncologists in the US. Additionally, if he can take pills or you can crush them up in a protein shake or something, add B6 50 mg/day, folic acid 1200 mcg/day and we get B12 shots every other week, but heard you can't get those in UK. You want to control the neuropathy so it doesn't cause permanent nerve damage. However, if he is truly in the dying process (you really should ask), then controlling his neuropathy may be a mute point, except that it is painful even when just lying down it hurts. So I would ask him if he wants to get it under control and if he does, try the gababentin or nutrients. It may be that the pain meds are handling the pain from it already, which is good.
I'm so sorry you are going through this! What an awful sudden turn of events in your life. You don't have much time to learn and get your head around what is occurring so that you can ease into caring for him on a more gradient level. I'm so so sorry. Keep us posted. - Lori
Thank goodness you have the hospice on offer
I think that they juggle this and try to keep beds free because there are basically more of us needing them than there are available, so I am very very relieved that you are going to have this major help. Hospices are specifically there to try to make us terminal people as comfortable as it is humanly possible, and I hope that very soon the pain will be sorted out. As you have already experienced. hospitals sometimes are pretty useless at this - as if it was something extraordinary. Yes I believe that they will deliver oxygen cylinders to your home if required, so it might be an idea to have one to hand just in case. It might well be the drugs that are causing the slurring of speech, or it might be lack of oxygen - I saw that because my partner suffers from epilepsy, and when he has had a seizure (when their rib cages lock and they do not inhale for what seems like eons) he too is confused, slurs his speech and can't remember names.
I'm sendin you loads and love, and am so sorry that you are having to go through this, especially as no-one is telling you what is happening. xxxxx (((((((hugs))))))))) Penny
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I am so sorry to read what you and your dear husband are going through at the moment.
You must not feel guilty. It is so good that this site is here for us to rant and rave on. It is so very hard on the outside, watching your loved one suffer and not be able to wave that magic wand to make it all better again. I do hope there is someone looking out for you.
The drugs do have odd effects especially the morphine.
I truly wish there was more i could say to make you feel more at ease. But we are all here to listen and chat when ever you have the need.
lot s of love and ((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))))))
Debbie and Robbie
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Hi Lori
Hi Lori
The neuropathy seems to be controlled. The pain is in his lung area & shoulder. I do give him the morphine but it doesn't seem to relax & make him rest, he almost seems like he gets a buzz from it. I'm not bothered by giving it to him, he is terminal so no harm there.
We are in CA. I noticed you are in the US too.
Unfortunatley, he is in the dying process. This has spread to his lungs & liver. I just need to know what to expect. Like the complications he will have with the liver. They delivered oxygen yesterday, so if he feels he needs it, it's here.
I'm so happy your husband's myleoma is in remission. I so wish there was hope for my love.
Thank you for your kind & informative note, Kim
What to Expect
I hope that you get a good hospice nurse who tells you what to expect along the way. Ask if she/he doesn't. You can always email me and I will give you some important things for you to know toward the end. If he can swallow see about getting him some percoet which has tylenol in it as well. For some reason, that did the trick for my mom when nothing else would and then you can use the morphine for break through pain or anxiety. Anyway, your hospice nurse can help you with that. Should be there number one priority, getting him comfortable.
I'm glad you are there for him and you seem to have a handle on it. But I can help in other ways in the dying process, from my experience with my mother. I had a good hospice nurse and she taught me a lot. Best, Lori