The Mental game

jpturn4

Hi

I really don't want to only post/ask about sad things, but has anyone got any tips for overwhelming sadness?

Unfortunately Paul's medical team here left us with the statement "lets hope he has a good response to chemo" farewell message.

After being told his bones (shoulder, neck and hip) showed worrisome results, then something in his liver, then something in his lung all of which we kind of/potentially wasted time disproving with various scans, but thankfully now know they are/were all clear when starting treatment. It was relevant as we constantly felt "they" were prepared to give us the news....no surgery! We fought and got them back on our side but with nodes confirmed lower then the main tumor site, below the celiac trunk and near the aorta no one will commit to what next. We are living in no mans land.

Mr Luketich at Pittsburgh has helped tremendously as even though he has not seem Paul in person, just his scans and reports, he has been the one to say..THERE ARE OPTIONS and not just "lets hope".

If someone told Paul to run 25 miles a day, do 2500 star jumps he could control and have a say in this, but not being able to do anything with regards to what the chemo does and does not do is excruciating.

I had to give myself a good hard kick to pull myself out of the depression bubble, but no matter what, he just can't seem to lift himself. He has now had 2 cycles of DCF and it is tough, as are the pains he is having, but I am just so worried about his state of mind. I made him read Sherri's great post full of hope and promise tonight, but after he finished he said "not one of them is staged as high as me" so then I felt I had failed him again...and I AM TRYING SO HARD!

It doesn't help when EVERYONE, well almost, looks at him with puppy dog eyes and of course want constant updates. which I am doing the lion share of oh and EVERYONE wants to tell us how they know someone....the next door neighbors, aunties, cousins brother who had ????cancer and lived, died etc and of course people mean well, but there seems no escape from it. Paul has always been strong, physically, emotionally and mentally and I have never seem him like this and feel desperate.

I have no doubt everyone who is on this site understands and has been through the same experience, that is why I am asking if anyone has any tips, help, advice on how to help him find his HOPE again. It will be bad enough when he goes through restaging, the sleepless nights, the worries and hopes that the chemo has blasted the thing, but thats a good 6 weeks away and he cannot go that long like this.

I truly believe the treatment will work, but his state of mind just can't be helping.

Sorry if this is too long and sorry for the pressure but i'll take any advice going.

Julie

birdiequeen

Maybe some things to consider
Julie,

I have seen the dark side and that is very hard to watch as a caregiver. My husband had pretty positive way of explaing his cancer to people but in his heart I'm not sure he was believing the words. As he describes it "the darkness fell" around Christmas in our house. I now believe not only depression but great anxiaty was cased by a medication he was perscribed to help in digestion. Reglan took him to a very dark place. The Dr. had told me to watch for signs of a stroke while he was on this medication but had not metioned depression. While looking for answers I read up on all the meds he was on or had stoped to see what side affects they may cause. It took us months to get a replacement dx from another country but knowing what was causing "the darkness" was a big help.

This past weekend I saw a PBS special called Anti Cancer which gave some things people can do to reduce their risk of getting cancer and increase their survival if they have cancer. hopefully you could reply that via the computer.

Hang in there, I know its hard.

oriontj

I wish I knew
There seems to be no end to the despair caused by this cancer. My husband trudges through everything never saying a word to anyone at all about anything. That includes me...I'm sure this is depressing him but he won't say one way or another, never does and I'm sure never will.

I don't know what I can say to help. I dealt with my depression with a therapist..who helped me immensely. I have a good friend to talk with.

Tom has a very good friend with stage 4 liver cancer after a whipple for bile duct cancer...I have no idea what they talk about or if they do.

All the encouragement in the world never overcomes cold hard reality. He knows what's happening and that's the hard part.

Prayers are about all I can offer...

Will he go to a cancer support group? That might help...if not..perhaps medication for it...

jan

GerryS

I can relate............
One year ago at my diagnosis, at age 57, I too was depressed. I was constantly sad and fearful of what was ahead of me. My wife is a very positive person and she tried desperately to keep me positive. She even had the doctor prescribe anti-depressant. I only took that for two days and quit it , without anyone knowing. I felt I had to fight this alone. I was surrounded by positive people, my children, my grandchildren and close friends. They rarely brought up the cancer only when I would and we would not talk about it very long. This way I could not dwell on it. Time does help, so does good news!
One sunday morning while walking into church, I overheard someone saying, "thats too bad about Gerry, I hear it doesn't look good!" I prayed that morning that I would prove them wrong even though I had no idea on my outcome.
I could not focus on work or anything normal for some time, probably 6 months or so. Luckily I had people covering for me so I could use this time to heal both mentaly, physically and spiritualy.
Please keep positive and some of this sadness is just part of the diagnosis. I will continue to pray that good news is to come and that will help. God bless.....

Gerry

I don't know if this helps, but wanted to share my experience.

DanaM

Where my help comes from...
At some point in EVERYONE's lives, they will face a challenge that threatens their mortality. My husband was diagnosed with EC and I am in the same position. We are scheduled for surgery in April. Our consultation was yesterday and everything was fine until the evening where the tears showed up. He is afraid and depressed...almost readying himself for death. I always believed in God, but wasn't a churchgoer, didn't know what "being saved" meant, until I was faced with my own impossible situation. Alot of people come to Christ like this, but the Lord proved faithful and made a way out. That was about 3 years ago-my husband and I are both saved Christians. I've since come to know the Lord well, through his Word and by staying in His presence. I have more faith in Him than I do in any doctor. My church and fellow Christians are keeping us in prayer. Jesus says in the Bible if a man abide in me and I in him, he will receive what He asks for. You don't have to run 2500 miles, just look up, confess all your sins, ask for forgiveness and receive Christ as your Lord & Savior. I don't know what your faith is-I'm just sharing with you; how I get through. He has yet to let me down. You've heard the expression "move mountains"...it comes from the Bible-God promises that if you ask for something with no doubt in your heart that you will receive it, than it will be so. Faith has to be cultivated, but it can be done. It happened quickly for me because I didn't have any other choices. If this sounds like something that you'd be willing to consider, get to a local Christian church and ask for help. In the interim, I'll be praying for you. Jesus never promised our lives would be without trials, and today-in my house-we're having a sad day-but I'll stay in prayer on that too and it will change because He promised never to forsake us. But I understand exactly what you're going through.

sandy1943

DanaM said:

Where my help comes from...
At some point in EVERYONE's lives, they will face a challenge that threatens their mortality. My husband was diagnosed with EC and I am in the same position. We are scheduled for surgery in April. Our consultation was yesterday and everything was fine until the evening where the tears showed up. He is afraid and depressed...almost readying himself for death. I always believed in God, but wasn't a churchgoer, didn't know what "being saved" meant, until I was faced with my own impossible situation. Alot of people come to Christ like this, but the Lord proved faithful and made a way out. That was about 3 years ago-my husband and I are both saved Christians. I've since come to know the Lord well, through his Word and by staying in His presence. I have more faith in Him than I do in any doctor. My church and fellow Christians are keeping us in prayer. Jesus says in the Bible if a man abide in me and I in him, he will receive what He asks for. You don't have to run 2500 miles, just look up, confess all your sins, ask for forgiveness and receive Christ as your Lord & Savior. I don't know what your faith is-I'm just sharing with you; how I get through. He has yet to let me down. You've heard the expression "move mountains"...it comes from the Bible-God promises that if you ask for something with no doubt in your heart that you will receive it, than it will be so. Faith has to be cultivated, but it can be done. It happened quickly for me because I didn't have any other choices. If this sounds like something that you'd be willing to consider, get to a local Christian church and ask for help. In the interim, I'll be praying for you. Jesus never promised our lives would be without trials, and today-in my house-we're having a sad day-but I'll stay in prayer on that too and it will change because He promised never to forsake us. But I understand exactly what you're going through.

Hi, Welcome to our group. In
Hi, Welcome to our group. In reading your response to Julie, I have to add, my faith was what gave me the strength to get through my treatment.I was already a christian, when I was diagnosed and I never questioned God. From day one I excepted my illness, knowing The Lord had me by the hand. I knew my will and God's will might be different, But I had the faith to Lean on Him and to trust. Yes, The first couple of weeks were depressing for me and my family, but then I called on God for peace in excepting what was to be and He heiped me. I am no super Christian, I have to go to God daily in order to fight the depression that loves to slip in. I Do experience bad days, but I go to Him in prayer and He lifts me up.
I pray for you all,
Sandra

fredswilma

No Man's Land
Hi Julie
My husband and I are also living in no man's land where everyone just wants to wait and see. He has already finished his chemo and at the moment his main tumor is in check. I know how frustrating it is just to wait when all you want is for the doctors to come up with something anything to fix this thing for good. My husband also cannot have surgery as his cancer has spread to lymph nodes, lungs and liver. This really is a horrendous disease and I think we all go through depression when we can't see a way out. My advice for what its worth is to hang on, to hold him tight when he can't sleep and to laugh with him, laughter is such good medicine. There is one silver lining to this horrid disease that is the only thing I can see thats not black and that is you are forced to realise how much this person means to you when sometimes in life in your day to day routines you forget, it also gives you the time to say all the things you need to say and lastly never give up on hope. Stay strong you are not alone.
Ann

jpturn4

The Mental Game
Thanks for the kind words, we're a little confused about where we are with God at the moment, but haven't given up of course. We actually have friends from at least 4-5 different faiths in 4 Countries praying for Paul, so that got to be a pretty powerful thing.

I've been reading for hours on this site tonight (as between our jobs, 4 kids, running the house and everything else I have no time) and i'm sure like many people LOVE LOVE LOVE to hear the inspirational stories. Paul did get some medication to help with the depression and they seem to be working a little, we also had some great advice from a good friend who is an Oncologist who described Paul's tumor and lymph nodes like a rolled out carpet that unraveled, he said if the DCF regime he is currently on doesn't do the trick then OF COURSE they will try again and again, a Plan A, B, C etc...he is the FIRST person to say this. He said the chemo had an excellent chance of rolling back the carpet up, again no-one has said this. He also talked about the importance of staying hopeful and positive, but in such a wonderful way and so much more confidently and believable than Paul's current team.

In fact I had a run in with Paul's oncologist this week, as when we saw his GI (more trouble than ever swallowing and the J-tube conversation has started) he told us about even more nodes that we didn't know about, it was a long story that I won't go on about but back tracked over a number of things. We haven't lost respect for his medical knowledge, but will be switching as soon as Paul's 4th cycle is done and the re-staging is complete with hopefully good news...which we are desperate for.

Another thing that frustrates us, is that he INSISTS Paul is T3 N3 M0, but his notes STILL say T3 N2 but Paul has extensive spread in the nodes, that so many others on here refer to as stage IVa and b, Paul's oncologist insists this is due to NEW staging criteria.......How confusing if not ALL doctors are not using the same staging methods. Does it really matter at this stage as we have to just stay hopeful.

Paul had finished his 3rd cycle on friday and is suffering still so badly with dizziness, lethargy, nausea and is wiped out, he has not complained ONCE. He has had 5 days of IV fluids and extra shots of Nausea meds to help, but not much luck so far so not sure what they'll do next. Thankfully a wonderful friend flew into town because it's spring break and is helping with the kids so I can just SIT and be with him, which he said that alone helps. I worry so much about his weight loss.

I think I have drifted off the point and am having a self therapy session, so I apologize.

Again I know everyone says this, but the time people take to reply, support, offer advice, kindness, understanding and prayer is truly amazing. I hope we are in a position one day to offer help and support to others in a bid to "pay it forward".

Thank you

Julie

jpturn4

The Mental Game
Thanks for the kind words, we're a little confused about where we are with God at the moment, but haven't given up of course. We actually have friends from at least 4-5 different faiths in 4 Countries praying for Paul, so that got to be a pretty powerful thing.

I've been reading for hours on this site tonight (as between our jobs, 4 kids, running the house and everything else I have no time) and i'm sure like many people LOVE LOVE LOVE to hear the inspirational stories. Paul did get some medication to help with the depression and they seem to be working a little, we also had some great advice from a good friend who is an Oncologist who described Paul's tumor and lymph nodes like a rolled out carpet that unraveled, he said if the DCF regime he is currently on doesn't do the trick then OF COURSE they will try again and again, a Plan A, B, C etc...he is the FIRST person to say this. He said the chemo had an excellent chance of rolling back the carpet up, again no-one has said this. He also talked about the importance of staying hopeful and positive, but in such a wonderful way and so much more confidently and believable than Paul's current team.

In fact I had a run in with Paul's oncologist this week, as when we saw his GI (more trouble than ever swallowing and the J-tube conversation has started) he told us about even more nodes that we didn't know about, it was a long story that I won't go on about but back tracked over a number of things. We haven't lost respect for his medical knowledge, but will be switching as soon as Paul's 4th cycle is done and the re-staging is complete with hopefully good news...which we are desperate for.

Another thing that frustrates us, is that he INSISTS Paul is T3 N3 M0, but his notes STILL say T3 N2 but Paul has extensive spread in the nodes, that so many others on here refer to as stage IVa and b, Paul's oncologist insists this is due to NEW staging criteria.......How confusing if not ALL doctors are not using the same staging methods. Does it really matter at this stage as we have to just stay hopeful.

Paul had finished his 3rd cycle on friday and is suffering still so badly with dizziness, lethargy, nausea and is wiped out, he has not complained ONCE. He has had 5 days of IV fluids and extra shots of Nausea meds to help, but not much luck so far so not sure what they'll do next. Thankfully a wonderful friend flew into town because it's spring break and is helping with the kids so I can just SIT and be with him, which he said that alone helps. I worry so much about his weight loss.

I think I have drifted off the point and am having a self therapy session, so I apologize.

Again I know everyone says this, but the time people take to reply, support, offer advice, kindness, understanding and prayer is truly amazing. I hope we are in a position one day to offer help and support to others in a bid to "pay it forward".

Thank you

Julie

linda1120

jpturn4 said:

The Mental Game
Thanks for the kind words, we're a little confused about where we are with God at the moment, but haven't given up of course. We actually have friends from at least 4-5 different faiths in 4 Countries praying for Paul, so that got to be a pretty powerful thing.

I've been reading for hours on this site tonight (as between our jobs, 4 kids, running the house and everything else I have no time) and i'm sure like many people LOVE LOVE LOVE to hear the inspirational stories. Paul did get some medication to help with the depression and they seem to be working a little, we also had some great advice from a good friend who is an Oncologist who described Paul's tumor and lymph nodes like a rolled out carpet that unraveled, he said if the DCF regime he is currently on doesn't do the trick then OF COURSE they will try again and again, a Plan A, B, C etc...he is the FIRST person to say this. He said the chemo had an excellent chance of rolling back the carpet up, again no-one has said this. He also talked about the importance of staying hopeful and positive, but in such a wonderful way and so much more confidently and believable than Paul's current team.

In fact I had a run in with Paul's oncologist this week, as when we saw his GI (more trouble than ever swallowing and the J-tube conversation has started) he told us about even more nodes that we didn't know about, it was a long story that I won't go on about but back tracked over a number of things. We haven't lost respect for his medical knowledge, but will be switching as soon as Paul's 4th cycle is done and the re-staging is complete with hopefully good news...which we are desperate for.

Another thing that frustrates us, is that he INSISTS Paul is T3 N3 M0, but his notes STILL say T3 N2 but Paul has extensive spread in the nodes, that so many others on here refer to as stage IVa and b, Paul's oncologist insists this is due to NEW staging criteria.......How confusing if not ALL doctors are not using the same staging methods. Does it really matter at this stage as we have to just stay hopeful.

Paul had finished his 3rd cycle on friday and is suffering still so badly with dizziness, lethargy, nausea and is wiped out, he has not complained ONCE. He has had 5 days of IV fluids and extra shots of Nausea meds to help, but not much luck so far so not sure what they'll do next. Thankfully a wonderful friend flew into town because it's spring break and is helping with the kids so I can just SIT and be with him, which he said that alone helps. I worry so much about his weight loss.

I think I have drifted off the point and am having a self therapy session, so I apologize.

Again I know everyone says this, but the time people take to reply, support, offer advice, kindness, understanding and prayer is truly amazing. I hope we are in a position one day to offer help and support to others in a bid to "pay it forward".

Thank you

Julie

Staging
Hi Julie,

My husband was told he was T3N3MO and people on the site said he was MIVa. I was told by his oncologist, surgeon, and surgeon's nurse he was MO. The new staging is not available on the web, and is different than what we can pull up. Jim had celiac node involvement, but his surgery was very successful, all 20 nodes removed showed no cancer, and the removed esophagus showed no cancer.
The chemotherapy and radiation that almost killed him eradicated the tumor and cancer throughout his lymph nodes.

I will be praying that your husband's results will be as positive.

Linda