Tom- We were told about 9 months after a recurrance. Neil lasted over a year. Sometimes the spirit is stronger than the body!

Sue

I've taken some time away from the board as well - the streak of sad news was too much. Thanks Tom for your candidness and frankness in your questions. Liz and Sue have been very good to me with the info. that I was seeking. So far, Jim has lasted a year and 2 months. We are getting results from another PET on the 27th.

Paula

Hey paula

good to see you.

love liz

Good to see you back Paula. Hopefully while you have been away you have been just relaxed and enjoying life as it is.

Hugs.

Donna

Paula- Hope you are hanging in there!

I am afraid I haven't been able to get back to reading posts, have been busy with paper work to file for disability. If you don't mind a couple of blind questions before I have all your stories.

Right now, Pam is aware that her cancer is incurable. She has never asked the question, how long do I have and I have never brought it up in front of her. Now that I know our time could be short, is it something that I need to bring up to her? I did call our church today and set up an appointment with our pastor next week to try to figure out what I should do. Do I disclose this fact to anyone, Pam, our kids, our extended family? Do I wait until her health starts to decline before disclosing anything?

I was wondering about your experiences, did you find out a time frame before the person with the cancer? When or did you share it with your family? We have three sons, 22, 19 & 14. My initial thought is that it was something that I would need to tell Pam, and share with our kids and families. But the more I think about it, I think Pam knowing that it could be a short period is a burden she doesn't need to carry. She knows that it is incurable. I can try to persuade her to do the things she wants to do and live every day to its fullest. Would it be selfish to keep this to myself, not allowing our kids and families in on this fact until sometime down the road?

Any suggestions or input on how you would or have handled would be appreciated.

Hi Tom
On the day Robs surgeon dropped the atom bomb,neither of us asked for a time scale,we were too stunned to speak really.When the surgeon left the room and the oncology registrar was talking to robin,i slipped out and caught the surgeon.I asked the question,and he said weeks not months.When we arrived home rob immediately set out his action plan,and within 48 hours he had made his will,sold his van and all his work tools,given notice to quit on our flat,rung his life insurance and cashed in his policy,told me to clear out all his clothes,and arranged for us to move to our home in yorkshire.What i didn't know at the time was he had asked the registrar the same question while i was out of the room,and he had told him days not weeks.
The point being we were both afraid to mention these conversations as we wanted to protect each other.We told everyone as we knew there was going to be a lot of peeople who would want to say goodbye,but that was because our window was so small,hopefully you will have many months to put your house in order.
As for the kids,i think honesty is the best policy .they are not children and will appreciate being treated like responsible adults,and will need to feel involved.Excluding them could cause untold resentment and heartache further down the line.

I hope this helps

love liz

Tom- We were very open with our children about what was happening. Everytime Neil had a scan-they would ask how things were going so they knew whatever we did at the time. He never had a good scan so they kind of got the picture right away. They were 17, 16, and 12 at the time. I had to press the doctor for a realistic expectation and Neil was in on the conversation. He went a lot longer with the treatment than I think i would have had the courage to go. With the last round of chemo, he knew it was time to stop as he was so very sick. We did however get wills, check into benefits and talk about the final arrangements several months before this. It was the right thing to do because we at least got to spend our last holiday season without having to talk about that stuff. We also had a great vacation with extended family last year which was a true blessing. Everyone knew it would be the last and made great effort to be there. My son was supposed to go to summer school but will be going this year instead. You will see that some things just become more important now. It's a great idea to have your pastor involved in this. Hopefully it will give your wife some solice. Try to be honest with her. Believe me, if she doesn't want to hear certain things-she'll let you know.

You will be left to pick up the pieces so you are right to come here to get advice from those who have done this before. Liz and Amy (JAM) have given me some much needed help through my ordeal.
Make sure the doctors are up front with you. I wanted to know all the details so i wouldn't be shocked. Noone can tell you exactly how the last months will be but for warned is for armed. As for your children, they are old enough to be told the truth so they can spend some quality time with Mom knowing that this is all they will have with her. God Bless you all.

Sue

Tom,
I can relate quite a bit, our children are 22 (in May) 18 and 13 and Pam is almost the same age as me. My view is as the patient and while it was 8 years ago that I was contemplating my own potential for shortened life, your questions still evoke some vivid memories. I would suggest that since the amount of time left is not precisely known, it is not fair to her to hide any information. Like others have said, if you say something that she is not able to cope with, she'll let you know. Pam may have things that she wants to do before the progression of her cancer makes it more difficult or impossible. If she has extended family they need an opportunity to see her.

I believe you would do better not to hide anything from the children either. They are much more perceptive than you might imagine and you would be found out. They are going to loose their mother and they need to deal with that reality. This is the time for family to come together. The bond between you all, created by this really difficult time, is what will support them in the years to come.

There is a gift hidden in all this, it is that she has some time yet. She can still communicate with you and the children and that is precious. Don�t dwell on the future or how bad things might get because no one can predict the future. Let people help you all. There will be wonderful things yet to happen � look for them.

I think you are right, I will need to have the conversations but think I will put it off until after next weeks scans then start looking for the best time. It still just seems so unbelievable. Last November while she was suffering going through chemo and radiation, I would not have been as shocked with a poor prognosis but when she seems to be doing well, putting on weight, being more active, it just seems wrong.

Paula, good luck on the scan results on Monday. I know I am never sure if I would prefer results on a Friday or a Monday.

Sue, I believe it sounded like Neil was doing very well and working throughout most of the treatments. Had he considered stepping back or checked into disability at all?

Our oldest son has been living on his own, our second is away at college, so just have one at home for another couple of weeks. I have heard from their cousins that the two living away from our home, it is out of sight, out of mind. I know from Pam's first operation and treatment, I wish I had pushed my oldest son to be more involved. From discussions with him regarding recent exams, he seems much more concerned now than last summer. Is there anything that you can think of that you wish you could have handled or done differently for you children?

Mark, could I ask where you were treated?

Thank you all for sharing your insights.