Don't Know What To Tell Him

Hi everybody.

This is Marco's friend from Italy again. I haven't updated our situation in a while, but bear with me, I need to vent and I know that I'm in good company here and that you'll listen.

Things are worsening, Marco's last RMI showed not only that the tumor that had re-grown in the same place is always there despite a cycle of a new chemotherapy combination, but also that there are many other lumps elsewhere in the brain. His wife chose not to tell him, but he's smart and already told us that he wants to read the report himself next Tuesday, when he'll be given (hopefully) his first round of Avastin. I don't know if it'll be of any help at this stage, but I'm not giving up hope.

Marco feels worse, though. He has poor balance, and his left arm and leg are less and less sensible, forcing him to stay indoors and with someone of the family always around, which is very annoying for him, stubborn and proud man that he is. He still walks, with some difficulties, but going up the stairs has become an impossible task.

He just wrote me a txt message saying that he feels that he won't make it till Christmas and that he will die soon. I know he writes me these things because he somehow hopes I'm able to tell him that it isn't so, but I really don't know what to say. I told him that no one can know for sure when it'll end and that his symptoms are not those of an imminent death (which is true) but I know that I don't sound realistic any longer.

How do you find the words to help a man who's dying? How do you know when to tell him "it's time to give up"? He knows that Avastin is the last chance and that there’s nothing after that if it fails, so it’s getting real hard to deny the inevitable. I’m not religious and I know that he’s very skeptical as well, so this is not an option.

I’m sorry, I know it’s hard to say something, so no worries. Talking about this has already helped me some.

Good luck to you all and thanks for listening.

Caring friend of Marco, dx May ’07 with GBM right temporal lobe, Temodal failed, CCNU+TCV failed, now about to begin Avastin.

Marco,

I believe your friend says the things he does to you because he knows you will be honest and not freak out when he confides his deepest feelings about how he feels.  He knows his wife will not be able to handle like you can.  You are a good friend.  Be there, listen and reassure him that there is still a fighting chance.  I believe a positive attitude is everything!!! 

We are currently in All Children's Hospital (St Petersburg, Florida) fighting Bacterial Meningitas and I was told originally this was life threatening and we needed to be prepared.  Fortunately my son is improving every day.  I rememeber after the doctor painted this grim scenario last week that I wasn't going to tell my 15 year old son he was going to die from this situation and not the tumor.  We wanted him to go about his every day like he always does.  He knows his cancer could eventually take his life and we didn't want to add to it by saying it maybe now rather than later. 

My son was on Temodar until March and has switch to Avastin and Irinotecan.  Currently he is showing progress on this combo.  I hope your friend does too.

I wish you and your friend/family all the best!!!!

Patty (mom to Taylor)

Hi Marco,

You sound like such a good friend and I was really touched by your posting. I'm also glad he will be trying Amvastin. Set aside from your friend as a caregiver what you're going through is one of the most traumatic and complex things you could ever be faced with in life. What I found both when I'm working in Clinical and also caring for my loved one is something very simple. 

You're there to listen and no matter what you'll never leave them. There is no magical right or wrong answer or a specific thing you can tell someone with a Terminal condition that will "make it all better" and help them put their fears away. (believe me I've thought forever on the right things to say) If he chooses to read the Radiology report against his wifes wishes thats perfectly ok. Nobody can or should deny him access to it. And when he does read it you're going to be there. And you can let him know you're not going anywhere. Hope that helps and further lets you know what a good person you are.

Brian

On 7/24/2008 TaylorsMoms wrote:

Marco,

I believe your friend says the things he does to you because he knows you will be honest and not freak out when he confides his deepest feelings about how he feels.  He knows his wife will not be able to handle like you can.  You are a good friend.  Be there, listen and reassure him that there is still a fighting chance.  I believe a positive attitude is everything!!! 

We are currently in All Children's Hospital (St Petersburg, Florida) fighting Bacterial Meningitas and I was told originally this was life threatening and we needed to be prepared.  Fortunately my son is improving every day.  I rememeber after the doctor painted this grim scenario last week that I wasn't going to tell my 15 year old son he was going to die from this situation and not the tumor.  We wanted him to go about his every day like he always does.  He knows his cancer could eventually take his life and we didn't want to add to it by saying it maybe now rather than later. 

My son was on Temodar until March and has switch to Avastin and Irinotecan.  Currently he is showing progress on this combo.  I hope your friend does too.

I wish you and your friend/family all the best!!!!

Patty (mom to Taylor)

Here is what usually happens when a GBM patient is honest about their feelings. They say something like " I am probably not going to make it until blah blah. Their family/friends respnd with " Oh don't be silly! You will outlive us all!"

 It's denial, plain and simple and designed to make the family feel better. Doesn't do much however for the patient who knows his/her time is limited and the clock is ticking.

If I were to talk (again) to Marco I would say something like "Yea buddy I can empathize with how you are feeling. But I was the one who told you that God wasn't done with you yet. And He may have something in store for you. It may be as simple as telling everyone you love how you feel about them. It may be reconnecting with someone and making amends. This is only part of your journey. The other side awaits you and I am pretty sure it will be glorious. Let's be honest. Whatever it is, it has to beat brain cancer hands down. I know how the endless routine of doctors, tests, chemo wears a soul down. And then there's feeling like death warmed over. Doctors don't tell you that you will feel like crap a lot of the time. But there are lots of us out here who can hold you up in prayer and just listen if you want to rant or cry or just talk. There is a brotherhood/sisterhood of us who have been there, done that and we have the T shirt and cap. I will PM Taylor's Mom with my email. Drop me a line Marco if you feel up to it. We can compare battle scars.

For the record: I was Dx June 2007 with GBM iv. 2 craniotomies, couldn't handle temodar (wicked evil stuff) Currently on Avastin only. Next MRI is Tues 7-29-08. But I am not losing sleep over the results. What will be...will be"

Hang in there marco. No one ever promised us a rose garden. But He did send us family, friends and message board compadres to help.

Hi

I was treated at Cancer Treatment Center of America and they have a motto that if God didn't give us an expiration date why should we."  Marco's doctors haven't given up and the new med may work so I wouldn't say now is the time for anyone to give up on Marco.  A positive attitude is so important when battling cancer and Marco needs all the encouragement he can get.  My husband had lung cancer and I think the day he lost the battle was the day they told him he was terminal.  He wouldn't leave the house and became very introverted (the complete opposite of what his true personality was).  After I told his radiation oncologist about his actions, he told him "You live until you die - the key is you LIVE until you die." 

I know you say you aren't religious but I would encourage you to go to a web site that shares a first hand experience from someone with brain cancer.  Her daughter has been writing messages on this site and last week she encouraged us to go to her mother's web site.  I read her and her husband's blogs (after she became too ill he took over for her).  They detail exactly what she went through during her fight and what her husband went through in her final moments as Kristy passed away on July 21.  If nothing else, the detailed experience of the final days can give you an idea of what final days actually may resemble; and at best, you can see someone who has a strong faith in God and how she and her family face her final days on earth.  I shed tears when I read the blogs - not for Kristy but for Milton (her husband) and the beautiful loving final moments he shared with her. 

Google Kristy Dykes and then click on Christian Love Stories. 

Diana   

On 7/24/2008 texasbelle5 wrote:

 

On 7/24/2008 Dlynn1210 wrote:

Hi

I was treated at Cancer Treatment Center of America and they have a motto that if God didn't give us an expiration date why should we."  Marco's doctors haven't given up and the new med may work so I wouldn't say now is the time for anyone to give up on Marco.  A positive attitude is so important when battling cancer and Marco needs all the encouragement he can get.  My husband had lung cancer and I think the day he lost the battle was the day they told him he was terminal.  He wouldn't leave the house and became very introverted (the complete opposite of what his true personality was).  After I told his radiation oncologist about his actions, he told him "You live until you die - the key is you LIVE until you die." 

I know you say you aren't religious but I would encourage you to go to a web site that shares a first hand experience from someone with brain cancer.  Her daughter has been writing messages on this site and last week she encouraged us to go to her mother's web site.  I read her and her husband's blogs (after she became too ill he took over for her).  They detail exactly what she went through during her fight and what her husband went through in her final moments as Kristy passed away on July 21.  If nothing else, the detailed experience of the final days can give you an idea of what final days actually may resemble; and at best, you can see someone who has a strong faith in God and how she and her family face her final days on earth.  I shed tears when I read the blogs - not for Kristy but for Milton (her husband) and the beautiful loving final moments he shared with her. 

Google Kristy Dykes and then click on Christian Love Stories. 

Diana   

Helloooooooooooooooo? This website has plenty or brain cancer patients who are responding and reaching out to help others. People like me for example. Please don't diminish our contributions.

I continually sing the praises of everyone on this website and would never diminish anyone's contributions (even the very few I don't necessarily agree with).  If anyone does go to the website, you can just consider it one more patient & caregiver's input.  Marco's friend said he wasn't religious so I suggested Kristy's website as an excellent example of how two people who had a deep faith in God dealt with her final days and her subsequent death.  I'm sure many others will offer their input also. 

Diana   

Hello again.

I would like to point out a few things for clarity's sake. Please forgive me, I'm Italian and English is not my language, I think that there's been some misunderstanding for which I sincerely apologize.

Marco is the patient, he's my best friend and I'm Catia, his best friend for years. I just realized that I've always signed my posts with "Caring friend of Marco", which probably confused someone.

Marco is perfectly aware of what he's going through. He's just not been told about the other lumps that have grown very numerous during the last month. I don't agree with his wife's decision of keeping Marco in the dark about this, but I'm just a friend, I'm not family, and I can't say anything. I can understand that she freaked out when the doctor told her how severe was the situation and she probably just wanted to adjust herself with the news to be able and tell him after a few days. Anyway, he's smart and I think he has already understood that something is wrong, because doctors have rushed the procedure to make him get the Avastin, which he was not supposed to get until September. He will see the report next Tuesday, by the way, and I do hope he won't decide to definitely give up without even starting the Avastin.

Marco doesn't speak English and is not in touch with anybody through the internet, I'm the one who's doing this with as much people as possible to know how to deal with this situation and help him and his wife to face it.

I know exactly what to expect when the end will come, either because I read many posts on many forums like this one, and then because many websites, like brainhospice.com, have very detailed pages about this, which I read very closely.

I'll turn 42 this Saturday, and they invited me over for dinner. I'll try to cheer them up the best I can. I know it'll be a hard task, but this won't stop me. I'll never leave them alone.

Thanks for all your kind messages, I really appreciate each one of them.

Let's keep up the good fight. We're on a tough road, but we'll do what's humanly possible to help our beloved ones.

Thanks again for listening.

Catia 

dear caringfriend,

I believe that telling Marco the truth is the only way to go. I have told my husband the truth all along about his dx of GBM (02 21 08).

He is now with hospice...with lessthan 8 weeks  left. it was just this past Monday that he asked our hospice nurse for her opinion about days?, weeks?,  or months?. She was very honest with him and while he has known all along about his prognosis this was the first time that the answer REALLY upset him.

He really had been in denial for the past several months...I never thought he was. But now the acceptance has come and things are very peaceful.

My husbands family are very religious, while Rob and I are not. There have been some hurtful conversations in the past....until I stepped up and told them to quit telling my husband that he was going to hell if he wasn't saved....sheesh.that was while he was in the hospital the day after brain surgery.

Now, however all is well...

My point is ..honesty, truth, and love. Marco's wishes should come first, fullfill his desires and treat him like a man.  Let him read his reports and refuse treatment or take treatment...it is his choice.Afew weeks ago my husband was in the hospital for brain swelling and severe headaches and vomiting...very near death. The NO offered him Avastin and CPT-11...my husband had refused the Avastin 2 years ago when he had colon cancer...because of the side effects...once again he said no way and decided to call it quits with treatments.

So today he is sleeping and is comfortable..he has just reached the stage where his deficits are increasing rapidly...however he made a choice and is living the rest of his life on his terms....

he is my life....I adore him...but in that love is a peace...and I have to let him go. No easy task...but I intend to do it well and honor his spirit and wishes...that I think is what marco would want as well.

hugs, Eve

On 7/24/2008 Caringfriend wrote:

Hi everybody.

This is Marco's friend from Italy again. I haven't updated our situation in a while, but bear with me, I need to vent and I know that I'm in good company here and that you'll listen.

Things are worsening, Marco's last RMI showed not only that the tumor that had re-grown in the same place is always there despite a cycle of a new chemotherapy combination, but also that there are many other lumps elsewhere in the brain. His wife chose not to tell him, but he's smart and already told us that he wants to read the report himself next Tuesday, when he'll be given (hopefully) his first round of Avastin. I don't know if it'll be of any help at this stage, but I'm not giving up hope.

Marco feels worse, though. He has poor balance, and his left arm and leg are less and less sensible, forcing him to stay indoors and with someone of the family always around, which is very annoying for him, stubborn and proud man that he is. He still walks, with some difficulties, but going up the stairs has become an impossible task.

He just wrote me a txt message saying that he feels that he won't make it till Christmas and that he will die soon. I know he writes me these things because he somehow hopes I'm able to tell him that it isn't so, but I really don't know what to say. I told him that no one can know for sure when it'll end and that his symptoms are not those of an imminent death (which is true) but I know that I don't sound realistic any longer.

How do you find the words to help a man who's dying? How do you know when to tell him "it's time to give up"? He knows that Avastin is the last chance and that there’s nothing after that if it fails, so it’s getting real hard to deny the inevitable. I’m not religious and I know that he’s very skeptical as well, so this is not an option.

I’m sorry, I know it’s hard to say something, so no worries. Talking about this has already helped me some.

Good luck to you all and thanks for listening.

Caring friend of Marco, dx May ’07 with GBM right temporal lobe, Temodal failed, CCNU+TCV failed, now about to begin Avastin.

 

Catia -

It does sound as if Marco has an idea of what is going on.  My husband's oncologist told me not to tell him he was terminal unless he asked - he never asked even after Hospice was called in.  The day a social worker with Hospice asked him if he had made arrangements for his burial he gave up on life (he hadn't even been told directly that he was dying).  As for me - before I even began treatment I asked my oncologist what my chances of survival were.  I guess everyone is different.  I know you say you are not religious but I am so I hope you don't mind if I say a prayer for you and Marco - friends are such a precious gift.

Diana