As little as a week ago, I felt so well....so much my normal self....that the cancer was barely believable. I do have stage4 nsclc, diagnosed 31 August.

Now I feel ill...my energy level just dropped to the level where I'm just sitting in bed all the time, my stomach has gradually swollen and is now really uncomfortable all the time. My legs have obvious changes each day...the muscle wastage being so fast has shocked me.
I asked my doctor if this rapid change indicates the beginning of the end. He said there could be dramatic physical change which then just stayed the same for months, before further decline. He didn't sound convincing.
I have a sinus infection, so I've started antibiotics this week. The dexamethasone 4mg has been reduced to 3mg.

I'm now thinking I haven't much time left.

Any advice, please? (This forum is a Godsend in itself.)

ellen-

My wife has experienced the same changes you have and as your doctor said, it has leveled off. My advice to you would be to try not to focus on the negative aspects of your condition. None of us know what tommorow holds or how much time we have, and some of us go quite suddenly and have no opportunity to say our goodbyes, tell our loved ones how we love them or perhaps mend a damaged relationship. You most likely have that opportunity.

My wife is just 42 and I am 38. Because of her condition, we have lost an intimate part of our relationship. I must tell you that is very hard to swallow. But instead of focusing on what we can't change, our relationship has grown in many other ways. So I hope you can focus on the good and the positive and as Winston Churchill would say "Never, never give up." Although my wife's condition is as yours, I continue to pray and look for ways to get stronger and better.

I am praying for you Ellen, I hope this is helpful.

conan

Thank you, conan1017, for your response. I am sorry to hear of your wife's condition, but am sure she derives much emotional strength from your sensitivity, and the growth of your loving relationship throughout this time.

I am lucky to have survived a massive pulmonary embolism at the end of August, which would have robbed me of this gift of time. The nsclc was discovered when I was taken into hospital with the MPE, and I have regarded the cancer as the lesser of the two evils...because I have been given time, precious time, to spend at home with my son. He has been away at university for the past three years, and graduated in July, so I had been looking forward to having him home so much !
From hospital, I was transferred to a hospice for what was promised to be "some intensive care", and my palliative team fulfilled that promise, sending me home feeling so fit and well at the end of September. I feel lucky to have had the chance to get to know my team well, and trust them to care for me in the times that lay ahead.
So I'd been positive in my focus.....last week I was ironing and packing for my son's weekend trip to Oxford (another round of parties with his friends !!) and I felt full of energy, happy to feel so much his "normal Mum"!!

The following day I had to stay in bed, no energy at all and with then noticeable physical changes, and for the first time I found myself in tears....not crying as such, just almost constant, involuntary tears...which took me by surprise, because I had been in good spirits at all other times.
I had to phone my doctor this week about an alteration in my steroid dose, and asked him about the rapidity of the changes .....it was his hesitancy that caused me to feel unconvinced by his answer.
My father died within six weeks of his cancer diagnosis, my mother within ten months, but theirs was not nsclc. Both of them suffered through embitterment and resentment, wholly negative, throughout their time. It was unbearable to see. So I thank God for my having a different disposition, and for the gift of acceptance of my condition.

Your response today has helped me. Thank you for that, and for your prayers. I will pray for you and for your wife.

ellen-

I think you are adjusting well. In case you haven't noticed, most who post here are caregivers. So I admire you courage and willingness to talk about what your going through. My wife won't even read the board, which is fine. She does not thrive in inofrmation like I do and doesn't want to know more than she has to. I don't think there is a one-size fits all remedy for dealing with these issues, everyone is different. I think there are some amazing people here (mostly women) who can be a great comfort to you. Take care and I see you around.

conan

You are a very brave lady and I applaud your attitude. I am pretty sick myself. I have no family except for my 83 year old father. Oh yeah and my two cats :) One of which is keeping vigil over me here in the bed. I moved my computer over here to the bed about a year ago because I knew my health was going down hill. I put all my DVDs on the HD so I can just watch a giant play list rather than having to get up changing tapes or DVDs all the time. I try to keep up with my exercising, but all I can eat is Ensure right now. I'm not diagnosed with anything but I've known something is wrong for a long time.

It is true none of us knows the hour healthy or not. My father did not believe he would make it past his 21st bithday as he was a POW in WWII for 11 months. I can't imagine the horror he felt even though I've heard him tell his stories many times. And now here he is at 83! He has advanced emphysema but is otherwise doing well. Good days and bad. He makes the best of it. He takes most of his physical problems with a grain of salt. I mention that to him and he told me he had to look at it that way or he'd lose his mind. A week ago, he woke up in the middle of the night totally unable to get air in. He was crying out it was so bad. The next day he told me about it, but he acted like it was no big deal. Then he had a rash break out all over his face. He shrugged that off too. I guess you just have to deal with things on a day to day basis when your health has betrayed you. Enjoy what you can and don't think about the things you can't do. When the fatigue hits me, I put on my favorite videos or listen to music and maybe doze for a while. When I'm feeling panicky about things, I try to exercise or read or even just take a walk around the house or go out for a deep breath of cool night air. I am lucky to not be in a lot of pain. And when I need to cry, I do.

We all have to live each day because none of us knows. I enjoy watching those Funny Video shows. Laughter and positive attitude are your best weapons against anything in life. And you seem to have a great attitude. I hope you and your son have a great time together. I will be thinking about you and keeping you in my prayers. I'm usually up most of the night so if you need to post I'll try to answer. Take care of yourself and do something nice for yourself tonight, you deserve it.

Blessings.

Thank you, Conan.
Yes, it became clear that the majority of people who post are caregivers, and many of them women. I have been amazed by the extent of the carers' knowledge, overwhelmed by their dedication to their loved-ones and their honesty in sharing their feelings; and by the phenomenal responsibilities they bear.

I have had to overcome my reluctance to post about myself and nsclc. Apart from the medical teams, nobody knows I have cancer. The only place I can talk is here, in the forum.
I attend one Daycare session at the hospice, each week,where I soon realised there is little or no conversation about cancer between fellow patients!

At home, there is just myself and my son. I want to know about the progression of this illness because I'll need to plan a few steps ahead....for bringing in people to help me at home.
Who better to ask, when I have questions, than the caregivers?

Your dear wife has no need to read the boards, Conan, because her trust in you will be enough comfort. I have read all your posts...you are an exceptional human being.