Can't stop crying tonight....

I am so sorry for your brother's pain and your family's pain.   I have no suggestions, but sending hugs to you all.  I bothers me so much to hear doctors say that patients should not suffer with pain, yet they do.

It's scary.

I can sympathize with the feeling of delay. It certainly doesn't feel like anyone else has the same sense of urgency as me and my wife to get treatment underway and stop/reverse this crap. I can tell you that radiation therapy was a big nothing-burger. No side effects for me.

I can only say that my hope comes from the support of my family, friends, and people here. I feel like I have a lot more in me than the stats on the Internet, so I'm ignoring those. I do push my doctors when I think they are moving too slowly, so does my wife.

I wish you, your brother, and your family the best.

Dan6652 said:

Abunai

Thank you for your response.

Yes, it's very scary. I've never been so scared in my life. The diagnosis is bad enough but when you are fighting daily pain it makes a bad situation even worse. Some days I walk around in a complete fog barely able to function. I can't imagine how he feels. Your fine one day and sicker than a dog the next. How long did it take you to recover from the spinal surgery? He is going into his second week of rehab. He is improved but still his blood  pressure tanks at times and he is very fatigued. I'm wondering if you felt the same way? I assume you still take medications for the pain from your spinal met? How well is the pain controlled.?Are you able to do your normal daily activities or does it significantly impact your daily life? I think if he could get some quality of life back his mental state would significantly improve. He does see pain management doc but they have struggled in finding a happy medium for him. I'm wondering if a palliative care doctor would be better? I'm sorry for all the questions but I'm trying to find some answers to all this madness. I  just wish I could make this all go away for him and the rest of the people on this board. I HATE CANCER! I'm so sick of it sucking all the joy out of people's lives.

Please take care and keep us posted on your progress.

I wish you the best of luck with your new treatment.

 

 

 

Dan,

I was in the ICU for 6 days, then they moved me to physical rehabilitation. By the time I had my surgery though, my spinal cord had been compressed to the point where I had lost total control of my left leg, a lot of function in my right leg, was retaining urine (couldn't pee) and lost a lot of sensation below the waist. I spent another 2 weeks in physical rehabilition. I was released on Oct. 21st able to walk with a walker. I'm on forearm crutches now, able to do small distances (20-50 feet) unassisted.

I've not had blood pressure issues. I am still taking Percoset, 7.5mg, X2 every 4 hours as needed for tissue pain (nociceptive?) and Gabapentin, 300mg, X3 per day for nerve (neuropathic) pain. My mood and outlook do, definitely follow my pain, but both are pretty well controlled with these medications.

I run a haunted house, so right now is my busy season and, even though I can't do much of anything physical from my forearm crutches and lazy boy chair, I am keeping busy doing the admin work and doing stuff I love. I'm sure that helps.

It does hit me, a couple times a day, "$h!+, I have cancer.". But I've got a lot on my plate, a lot I want to still do, so I research what is the best way to turn my "fatal disease" into a "chronic disease" and live.

I have no problem with the questions, whatsoever. Keep on asking, as it sounds like our cases have quite a bit in common.

My best to you. I can't imagine what my wife, who is playing the role of my rock, like you are playing for your brother, is/has gone through. A lot of added stress, work, worry, etc.

Give my best to your brother, too. You all hang in there.

So sorry to hear what your brother and you as family are going through. Pain like that is miserable and - as others have said - crying is a totally reasonable response. 

Prayers and caring thoughts for your brother, you, your mom, and the rest of your family. Hugs to you all. 

Jerzy

Hang in there!  When cancer is discovered it is devastating. But, there are a lot of new meds on the market that can do wonders.  Lots of great examples on these boards of those here past five years.  They have now  found ways to treat cancer as a chronic disease.  Take one day at a time and continue  being positive.  It is always harder in the beginning.  Once he heals they will do radiation  which will help with pain and Dimish the remaining tumor. Then he can start targeted treatment if he needs it.  If the nodules are small, it is good.  Try not to read too much on the net, outdated information can get you more worried. If you haven't already, sign up at smartpatients.com.  They are very knowledgeable and up to speed on new treatment.  Hugs to all and mom! He will do fine!

Dan,so sorry  your family is going through all this at this time. No one wants to see a loved one suffer and go through so much.  Let your brother know that we, complete strangers, are there for him and understand best we can~ok?

And just a suggestion: write a journal on each and every day, week or so and read it back to him at times so he can see what he already made it through, starting with each of those surgeries. Sometimes you have to look back to see you made it farther than you feel.

But I think YOU, Dan, are an amazing brother!!

Love can heal more than the heart!

Hugs, Jan