Oh Mar i am with you in spririt and wishing you like me will survive this terrible journey we are going through.Last week the Doctors flagged up Robins headaches and muttered about seconderies.Still with the steroids taking the swelling on his face down the pressure seems to have been reduced and the headaches gone.

I dont get on the boards much as i am so tired when i get home from the hospice but i think of you all coping with your demons and i pray for you all every day.

much love liz

Marlene, Liz...hang on with everything you have. I know it's unimaginable what you're going through. I am still not completely over my own battle, and now am watching my father lose his fight with lung cancer.

He was diagnosed a week after his younger sister passed away from it...my fifth week of radiation.
Of course, initially they were talking about significant success, and then dicovered his cancer had penetrated the left ventricle of his heart.

Radiation slowed the primary, but he couldn't tolerate chemo. He wound up in hospital with kidney failure after one round, so they stopped it.
A CT scan this past weeks shows infiltration into his hips and his other lung. He is in so much pain trying to walk around, and the choices left to him are to be medicated for pain until the end ( not long), or try additional radiation and a modified chemo cycle, add a month or two of life but be sick starting immeidately.

Tough choices. Ones that I firmly believe are his to make, and whatever he decides I will back him 110%.

I love him dearly and don't want to ever lose him. At the same time, I don't want to see him suffer through something that will not change the end result. It's not my choice, nor my call. Each of us has our own needs for moving from this life to the next. It is so terribly hard to watch...I FEEL the pain he is in; it is an old and personal enemy that I have battled. I UNDERSTAND his sense of dipair, and being overwhelmed....I have my own experience with both. He and I SHARE the hatred of the Beast that is cancer on a deep, intimate level.

Alcoholics Anonymous will tell you the only person who can truly relate to a drunk is another drunk; I think to a degree that is also truly of a cancer patient. That's not to say that you can't relate; you both can understand, sympathize and empathize with what your loved one is going through. My trouble is that I know from first hand experience how horrible the disease affects your body, in so many ways not obvious or even explainable to someone who has not endured them.

I wish you all peace, as much as that is possible. I wish for the two of you the understanding and support that you need so desparately right now. I hope this life, and it's consequences don't defeat you. There is much to come in our lives, good and bad. I think our best sometimes comes out in the worst circumstnaces. I see that in both your posts.

Your men are very lucky men indeed to have women like you beside them, walking with them through this journey.
Wayne

Hi Friends:
Our oldest son and his wife are here to help go through the basement and put the stuff into storage so that the basement can be insulated and finished into two rooms.
The idea is that my youngest son will move down there and I will get my office and the family room back.
This is needed as I am going to need to do more work at home. I haven't been at the office since last Wednesday. Alan has had a bad time and can't be left alone.
My youngest daughter TM is taking an unpaid leave of absence from her job to help with my husband and my business. I thought she had a background in bookkeeping as well as banking but she reminded me that it has been 7 yrs since she did any bookkeeping and that was a course in college. Now I don't know what to do.
Alan is detirating by the day. today had a shouting match because I keep changing where we live and he had no say in it. So where do we live and what happpened to the house we bought?
We have lived here since 2001. We bought the house after living in Rental accommodation for 3 yrs. I understand the confusion as we have traveled to visit family and stayed in our old home visiting my daughter JM. She bought it form us in 2001. As well we have visited with other family and stayed in a B&B while traveling. I had to get the deed to the house out and Alan is studying it.
He is very confused about the size of this house and can't find things. The destamathorizine isn't working its magic anymore.
The cancer has ulcerated in his mouth and he is going at it with lydocaine and a green scrubby brush. I think he pops the tumour open and releves the pressure as he cleans his mouth.
He is having accidents with the PEG tube because he doesn't remember what it is for. So far he tried to drain it. Clean it out by running tap water into it. Tearing it out of the pump because that stuff is going to get him. And asked when the oxygen will be conected to it.
The worst part is when he doesn't remember he has cancer and doesn't understand that that is the only way he can eat. I have to tell him all over again and it just deflates him like a ballon. Then he just sits in the chair and stares out the window.
The off spring are fighting me on bringing a hospital bed in. They make it sound like I don't want to sleep with him any more. He is having trouble s breathing, laying flat and he is being feed at night so he isn't supose to lay flat. He is starting to lose control bladder and bowel function as well.
I will admit that the smell coming out of his mouth wakes me up at night too. I want him comfortable and safe.
I am tired. My clients need better than what I am giving them. My husband deserves my full time care and I need to rest or I will also need care. I am totally confused.
I hate this Cancer.
Marlene

Hello Marlene

Please call me tomorrow.

Peter Billias 561-667-3631

You need to call HOSPICE and they will handle all these things for you, no charge. I can get a bed but I do not need one at this point.

The nurses and drs. come by regularly and they set up my meds and make sure I have everything I need.
I have a 24-7 phone line to call, and a HOSPICE EMERGENCY# to call if needed. They bring my meds to the door and handle everything. They will help you with housing and "end stage" if needed.

I can ask for 24 hr. car if needed, but I do not. My family comes by, but we just chat and go.

The dr is coming tomorrow for check-up and nurse will refill all my meds that I need ,(I have plenty now). They will give you a social worker, phyc. Whatever you may need.

Please call. You should not be carrying these burdens. Even if HOSPICE is not your choice, they will handle many of these duties for you.

I may be here next month, or I could be gone tomorrow. But I an in no pain and I am comfortable. That is what they want for you. They get you ready for bed. Just like mommy used to do.

No kidding, that's how I feel. I just have not fallen asleep yet.

Please call me. You should not be carrying this on your shoulders alone.

My wife knows all the nurses and the dr and has all the numbers.

This is just the beginning of your husband

Marlene, I think about you and Alan often. I wish there were comforting words to say that would make things easier...I'm not sure there are any of those words left to say.

You have to do what it right for you, and for Alan. I think Petey is right about the hospice, however that is a highly personal and individual decision. I would love to talk to you, of course that's up to you. If you like, send me a PM and I'll pass along my number
Wayne

Dear Marlene,
I have no advice to offer, but I will continue to keep you and your family in my prayers. It is so disturbing hearing the first time that you have cancer, I can't imagine having to tell your husband repeatedly. Your heart must ache. I am so sorry for what you are going through.
God Bless.
Donna

Dear Marlene, unlike Donna, I do have advice to offer since I have recently been in your shoes. You DO need Hospice help-NOW- or you will quickly become a "basketcase" from lack of sleep and too much responsibility. Please belive me when I say that Hospice will make Alan more comfortable than you can, and will teach you things about nursing that you don't know. You need to disregard your children's advice about the hospital bed and do what is best for you and Alan. This is not about sleeping together, it is about coping with his cancer and your stress level. [ In fact, I had to disregard alot of advice from John's son during his last 3 months because son was #1.in denial about his Dad's condition, #2.son was only in and out of our house to visit- not there 24\7 #3.Son had no clue as to the effect the pain meds were having on John mentally, which also affected me because it was hard to leave him alone for very long - ie- no sleep for me. If you daughter can't handle the bookkeeping, find a temp. bookkeeper. You will not be able to run your business and take care of Alan as he gets worse. This is where you have to gather up all the strength you have to go forward. Sending you best wishes. Amy in the Ozarks

And this is where this board is so invaluable! No one can offer advice like the person that has walked thru the storm!

Thanks Amy for your insight...I can't imagine your pain as you relive this nightmare thru other's experience and I appreciate the strength it takes to continue the fight.

Deb

I can only echo everything that Amy has said.I hope you got my e-mail.

love liz

Hi friends
Update:
The occupational therapist was in today she gave me advice in how to set up the bedroom for Alan and explained the use of the hospital bed to everyone. Alan has decided to try it.
I have what they call here in BC Pallitive care. They send a nurse by every day if I need it. There is home care hours if I request it.
My daughter =in-law insists I phone and get them to set up time with a councilor so I have someone to talk to that can make sure my meds are right. Did I ever mention I am a CFS/ME patient. "no stress" LOL
I stripped the wall paper off the walls in the bedroom that is going to be Alan's new room. New floor in this week and then I will call and have the bed delivered. We still go to the Dr's office but he has said he will come to the house as Alan progresses.
I am hiring a full time assistant. She starts on Monday. Like an idiot I also have two new clients starting next week as well. I may hire a second one just to keep things going.
Son #1 took care of Alan this Am so I could get into the office. He got to answer the uncomfortable question and tell alan where he lives. It showed them I wasn't making this stuff up. They became much more fexible when the OT and the home care nurse were here.
Alan is having the mind problems because the cancer has moved into the brain area . It effects the blood flow and the memeory area. Thanks for your advice and suport.
Hugs Marlene