In Shock

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In Shock

by Dixienh on Tue Jun 09, 2009 12:00 AM

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     I Moved to Maine to care for my mom who was not yet diagnosed with LSCLC(Limited Small Cell Lung Cancer). This was in Early July of 2008~She was diagnosed with cancer in the latter part of July 2008.After 4 chemo treatments and 20 6min. radiation treatments~her cancer was in remission. However, she still was experiencing PAIN on her left side and radiated to front on the left as well.(Her cancer was in the Lower-Left Lobe of her Left Lung.) This was "baffling" to medical team, as well as myself for her to have continued pain after test results showed remission. The MRI's,CT's Bone Scans,etc. Nobody could ever find out the mysterious left-side pain~

     I did ask doctor's if they thought she might be dying, and they said no. She was losing weight dramatically, and they just loaded her with pain meds and she became a person I did not know~

     I lost my mom on April 24,2009 ~God Bless her~

     The Death Certificate states she died of:  Aspiration Pneumonia due to

Depressed Mental Status ~

     Kind of makes me think she "gave up her fight" from not getting relieved from her pain~ Believe ME! I KNOW how much PAIN she was in~

     My personal mission at this time is to find and meet people who may have some sort of answer as to WHY the pain? The doctor's said it WAS NOT CANCER RELATED~If someone else out there might have a clue~I am all eyes and ears~I have done loads of research, but to no avail.

     In case some would like to know how 'young' she was~69yrs.~She would have been 70 this July~

     Thanks all for reading. If you have lost a loved one,friend or family member due to Cancer~God Bless Them and their families ~Never give up hope~I just know with today's technology, many cancers will actually be "CURED."

                               Keep the Faith and Hope

RE: In Shock

by Dixienh on Tue Jun 09, 2009 12:00 AM

Quote | Reply

 

On 6/9/2009 Dixienh wrote:

     I Moved to Maine to care for my mom who was not yet diagnosed with LSCLC(Limited Small Cell Lung Cancer). This was in Early July of 2008~She was diagnosed with cancer in the latter part of July 2008.After 4 chemo treatments and 20 6min. radiation treatments~her cancer was in remission. However, she still was experiencing PAIN on her left side and radiated to front on the left as well.(Her cancer was in the Lower-Left Lobe of her Left Lung.) This was "baffling" to medical team, as well as myself for her to have continued pain after test results showed remission. The MRI's,CT's Bone Scans,etc. Nobody could ever find out the mysterious left-side pain~

     I did ask doctor's if they thought she might be dying, and they said no. She was losing weight dramatically, and they just loaded her with pain meds and she became a person I did not know~

     I lost my mom on April 24,2009 ~God Bless her~

     The Death Certificate states she died of:  Aspiration Pneumonia due to

Depressed Mental Status ~

     Kind of makes me think she "gave up her fight" from not getting relieved from her pain~ Believe ME! I KNOW how much PAIN she was in~

     My personal mission at this time is to find and meet people who may have some sort of answer as to WHY the pain? The doctor's said it WAS NOT CANCER RELATED~If someone else out there might have a clue~I am all eyes and ears~I have done loads of research, but to no avail.

     In case some would like to know how 'young' she was~69yrs.~She would have been 70 this July~

     Thanks all for reading. If you have lost a loved one,friend or family member due to Cancer~God Bless Them and their families ~Never give up hope~I just know with today's technology, many cancers will actually be "CURED."

                               Keep the Faith and Hope


 

RE: In Shock

by oceanswimmer on Thu Jun 11, 2009 12:00 AM

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I am sorry for your loss of your mom.

I don't have any answers for you, and I am not knowledgeable about lung cancer.  But some questions came to mind when reading your post.

Do you think she could have been having nerve pain?  If there was damage to nerves, nerve pain can cause radiating and very severe pain, and some pain meds are not effective for nerve pain. 

And aspiration pneumonia from depressed mental status?  I'm not sure what is meant by depressed mental status.  I'm not sure I can explain my thought here well, but I'll try; I don't know the proper medical terms to use....  My dad had dementia and they did swallow tests on him to see if he could properly swallow food.  My son also had swallow tests before being allowed food after his brain surgery.  What was being tested was the ability to swallow, which is like a reflex.  So I am wondering if they mean depressed as in the reflex/functional level of brain, or depressed as in "down" or "giving up" type feelings that we associate with depression.  You might ask a doctor to explain it to you.  I don't think that depression is associated with aspiration pneumonia.  People with depression (without some sort of brain injury/damage) are not given swallow tests, at least not to my knowledge.  I think swallowing is a reflex, and the mental status relates to the nerves firing or however the reflexes work, which originates with brain functions.  But I do not believe this involves what we think of as depression.  Someone who can't swallow properly, due to brain injury/damage or impairment, can aspirate food, and that causes aspiration pneumonia (bacterial infection in the lungs from whatever was aspirated).  Aspiration pneumonia can be treated with medications to clear the infection, although I think it can be difficult to treat.

I'm also wondering how they would know the cause of the aspiration pneumonia.  A person can get it after having something come up while sleeping and aspirating, or during eating if they can't swallow food properly.  Maybe pain meds affected your mom's ability to swallow.  ?

Was the pneumonia diagnosis prior to her death, and was she treated for it?

I'm sorry that I don't have any helpful information.  Those are just questions I had when reading your post....

I hope you find peace and the understanding you need.

 

RE: In Shock

by CancerStrike2 on Thu Jun 11, 2009 12:00 AM

Quote | Reply

 

On 6/9/2009 Dixienh wrote:

     I Moved to Maine to care for my mom who was not yet diagnosed with LSCLC(Limited Small Cell Lung Cancer). This was in Early July of 2008~She was diagnosed with cancer in the latter part of July 2008.After 4 chemo treatments and 20 6min. radiation treatments~her cancer was in remission. However, she still was experiencing PAIN on her left side and radiated to front on the left as well.(Her cancer was in the Lower-Left Lobe of her Left Lung.) This was "baffling" to medical team, as well as myself for her to have continued pain after test results showed remission. The MRI's,CT's Bone Scans,etc. Nobody could ever find out the mysterious left-side pain~

     I did ask doctor's if they thought she might be dying, and they said no. She was losing weight dramatically, and they just loaded her with pain meds and she became a person I did not know~

     I lost my mom on April 24,2009 ~God Bless her~

     The Death Certificate states she died of:  Aspiration Pneumonia due to

Depressed Mental Status ~

     Kind of makes me think she "gave up her fight" from not getting relieved from her pain~ Believe ME! I KNOW how much PAIN she was in~

     My personal mission at this time is to find and meet people who may have some sort of answer as to WHY the pain? The doctor's said it WAS NOT CANCER RELATED~If someone else out there might have a clue~I am all eyes and ears~I have done loads of research, but to no avail.

     In case some would like to know how 'young' she was~69yrs.~She would have been 70 this July~

     Thanks all for reading. If you have lost a loved one,friend or family member due to Cancer~God Bless Them and their families ~Never give up hope~I just know with today's technology, many cancers will actually be "CURED."

                               Keep the Faith and Hope


Hello,

When my Dad passed away at USC (84 yo), they did label him the same thing.  He was supposed to go home in 2 days after finishing a bad virus thru pic line pneumonia treatment. That sunday nite, he aspirated in blood and hospital sedated him too strong into Coma.  Within 2 days they recommended us to remove his life support.  During this removal of life support, his organs still showed working well.  After the 2nd week, we were panick based on the above facts his organs were still working and requested to put him back on life support.  It was too late.  He was too weak.  He was left starving for too long ( in USC for 2 months without feeding tube and proper nourishment but IV fluid / dextrose). 

Up to now, I am still upset to think about it, that my family put our trusts in the doctors and they killed him on their below average knowledge. They did not show enough caring and compassionate. 

We are now found out the reason of his aspiration because he was depressed, stressed out on his condition in hospital too long and he got ulcer tumor.  He aspirated due to ulcer and they did not know that - which it is very common for bed-ridden patients ( mom was saved twice as she aspirated in blood in April and GI doctor determined ulcer related). 

 On top of it, they constantly injected him morphine pain killer (addictive) and gradually killed his heart (weaken, slow down the heart beating).  If you read the news you would hear a lot famous pple died due to overdose pain killer!!!  

Knowing all of this but the doctors still wanted to skip out the main fact and labelled their patients as that.  One day, you and me should go to Congress and stop those doctors doing that to our beloved one and prevent them to do it again to others.  I want the hospital to change their treatment way toward a patient, show more true compassion instead.

My sincere condolenses to you and your family.  I know exactly how you feel. I was upset and bottled up for all of that sudden loss...  My dad did not die cuz of Cancer....  It baffled us up to last month we now realized what was really wrong with DAD.

Victoria

RE: In Shock

by Merrilee on Fri Jun 12, 2009 12:00 AM

Quote | Reply

I lost my husband to Leukemia and this is helped me make sense of the whole thing....I hope it helps and prayers with you....

 

The Caregiver’s Journey

The caregiver has given time and love in ways that people see and respect, even if they do not fully understand.  But the caregiver has received "gifts" from the dying person: trust and love of a kind rarely experienced, and the dying experience itself.  It is all of this and something more that the caregiver receives. In trying to explain what it is about, one man offered the following analogy that he referred to as "The Journey."

Imagine helping a friend on a journey to a remote monastery perched on top of a mountain.  As you begin your trip, the path is fairly clearly marked and the goal easily seen in the distance. But as you approach, the monastery is often obscured by the tops of trees in the forests through which you pass.  And you say " if only we could get out of this woods, we would be able to see the monastery again and see where we're going."  And as you continue the climb, the path fades and much is accomplished by guesswork. You call on your friend for help.  After all, this is his trip and he should know what he's doing.  But he becomes older and weaker and relies more on you moment by moment.

Things get worse.  You lose the path and you are tired and hungry.  But, he can not proceed alone and you can't leave him on the mountain while you return to the warmth and safety of home.  So, you find a new reserve of strength, enough for both of you, and you continue up the mountain, for now it is your journey, as well. You look at yourself anew and find that you have gown older, become more mature like your friend, and you accept this as part of the mutual trip.  And in accepting your role as guide you find that you are guided, that your friend, whose legs have crumpled beneath him by now, offers you wellsprings of courage and hope. You drink deeply, for you realize that if either of you are to make it to the top, it will need both of you guiding and supporting the other in ways constantly changing and unimaginable.

One day when you least expect it, the heavy cedar gates of the monastery are suddenly dead ahead.  The trip had become the whole purpose, it seemed, and the monastery forgotten. But there it stands: Your friend's objective has been reached The door opens to admit your friend and, as if you had performed the ritual many times before, you hand your friend over the threshold. The door closes, and you stand there numb, alone, bewildered.

Out of habit you continue walking. It doesn't seem to matter in what direction, for each of the possible paths lead back down from the mountain.

The trip down seems easier than the trip up was. The mountain holds few surprises, now, and there is ample time to sit and ponder before reaching the valley below. And somehow in reviewing the trip with your friend, its moments of desperation and fear are overshadowed by the times of giving and accepting, of sharing and journeying together. Memory of the monastery fades and in its place stand crystal images of points along the upward trek. There was the time you picked him up and carried him across the rocks when his strength failed. And there was the time when you slipped and lost your grasp, but he held you up and supported you with the power of his mind. There was something special in those moments, something, which if you could string all of those images together in just the right order, that then, maybe then, you would understand.

As it is, you return to the valley a different person, quieter and stronger, knowing only that you have been a part of something .... holy. This friend shared with you his most personal possession, his death. And though you can't quite comprehend its true value, you find yourself hoping that you will have the ability to fully experience and share your final journey with another wayfarer to whom you can pass on crystal images.

Deep gratitude and celebration are the order of the day for those of us who are called to assist in this challenge.  The suffering, remember, is found only in our refusal to let go, only when we refuse to go through the pain and move to the other side. We get through by going through. The rewards are wonderful: the joy and blessings that come from extending the self beyond its own comfort zone; the knowledge we gain of life and death; the love that is lost and found again on a higher plane; and the areas of awareness that are opened.  Grief is a healing process to be welcomed and not feared, for when it is allowed to go its own course unobstructed, it will fill with wonder the void that the loss created.
 

RE: In Shock

by babyhuey on Thu Jun 18, 2009 12:00 AM

Quote | Reply

 

On 6/12/2009 Merrilee wrote:

I lost my husband to Leukemia and this is helped me make sense of the whole thing....I hope it helps and prayers with you....

 

The Caregiver’s Journey

The caregiver has given time and love in ways that people see and respect, even if they do not fully understand.  But the caregiver has received "gifts" from the dying person: trust and love of a kind rarely experienced, and the dying experience itself.  It is all of this and something more that the caregiver receives. In trying to explain what it is about, one man offered the following analogy that he referred to as "The Journey."

Imagine helping a friend on a journey to a remote monastery perched on top of a mountain.  As you begin your trip, the path is fairly clearly marked and the goal easily seen in the distance. But as you approach, the monastery is often obscured by the tops of trees in the forests through which you pass.  And you say " if only we could get out of this woods, we would be able to see the monastery again and see where we're going."  And as you continue the climb, the path fades and much is accomplished by guesswork. You call on your friend for help.  After all, this is his trip and he should know what he's doing.  But he becomes older and weaker and relies more on you moment by moment.

Things get worse.  You lose the path and you are tired and hungry.  But, he can not proceed alone and you can't leave him on the mountain while you return to the warmth and safety of home.  So, you find a new reserve of strength, enough for both of you, and you continue up the mountain, for now it is your journey, as well. You look at yourself anew and find that you have gown older, become more mature like your friend, and you accept this as part of the mutual trip.  And in accepting your role as guide you find that you are guided, that your friend, whose legs have crumpled beneath him by now, offers you wellsprings of courage and hope. You drink deeply, for you realize that if either of you are to make it to the top, it will need both of you guiding and supporting the other in ways constantly changing and unimaginable.

One day when you least expect it, the heavy cedar gates of the monastery are suddenly dead ahead.  The trip had become the whole purpose, it seemed, and the monastery forgotten. But there it stands: Your friend's objective has been reached The door opens to admit your friend and, as if you had performed the ritual many times before, you hand your friend over the threshold. The door closes, and you stand there numb, alone, bewildered.

Out of habit you continue walking. It doesn't seem to matter in what direction, for each of the possible paths lead back down from the mountain.

The trip down seems easier than the trip up was. The mountain holds few surprises, now, and there is ample time to sit and ponder before reaching the valley below. And somehow in reviewing the trip with your friend, its moments of desperation and fear are overshadowed by the times of giving and accepting, of sharing and journeying together. Memory of the monastery fades and in its place stand crystal images of points along the upward trek. There was the time you picked him up and carried him across the rocks when his strength failed. And there was the time when you slipped and lost your grasp, but he held you up and supported you with the power of his mind. There was something special in those moments, something, which if you could string all of those images together in just the right order, that then, maybe then, you would understand.

As it is, you return to the valley a different person, quieter and stronger, knowing only that you have been a part of something .... holy. This friend shared with you his most personal possession, his death. And though you can't quite comprehend its true value, you find yourself hoping that you will have the ability to fully experience and share your final journey with another wayfarer to whom you can pass on crystal images.

Deep gratitude and celebration are the order of the day for those of us who are called to assist in this challenge.  The suffering, remember, is found only in our refusal to let go, only when we refuse to go through the pain and move to the other side. We get through by going through. The rewards are wonderful: the joy and blessings that come from extending the self beyond its own comfort zone; the knowledge we gain of life and death; the love that is lost and found again on a higher plane; and the areas of awareness that are opened.  Grief is a healing process to be welcomed and not feared, for when it is allowed to go its own course unobstructed, it will fill with wonder the void that the loss created.
 


Hello Merrilee

I thank you from the bottom of my heavy heart for the gift that I have just read. My wife has Stage IV NSCLC in both lungs. She was diagnosed in November 2007 and have had all the recommended chemo plus been on a clinical trial. They drop you like a hot potato when the symptoms start detoriating. We are now on Tarceva which we have to import in as it is not registered in South Africa.

She has been stable for the last 8 months but having a very hard time mentally. She would refuse to talk to me for a week at a time but when she is up the love is all there. Have spoken to a councillor at our oncology clinic and am trying to get myself mentally strong.I have to be strong for the two of us.

Your Journey I will frame and send it to all our friends to keep us STRONG.

Once again many thanks

Alan

 

RE: In Shock

by AMW56 on Wed Jun 24, 2009 12:00 AM

Quote | Reply

Although I am in tears, this posting gave me such clarity of purpose in being the caregiver.  Being a nurse, I have always been there for my patients, and yet when it is this close and personal to my best friend, it is so special.  I have copied this into my journal...as it will be a cherished statement of why I am here and how I can keep going in helping my best friend.  AMW

RE: In Shock

by rightman44 on Mon Aug 03, 2009 12:00 AM

Quote | Reply

First of all am with you at this hour of sorrow. I can feel the pain specially, when our beloveds are lost.

I believe that that there is a cure for every disease (because it is a word of God). How far our science, technology and research succeeds in knowing the treatment for each disease is a matter of time. Similarly, if the doctor's do not find the cause of pain as per their knowledge, then it will be concluded as a not related matter.

I suggest you to be patient and pray for your mother and forget the past.

Wishing you the best of your life.

Regards.

Mohammed M

RE: In Shock

by Dlynn1210 on Mon Aug 03, 2009 12:00 AM

Quote | Reply

 

On 6/12/2009 Merrilee wrote:

I lost my husband to Leukemia and this is helped me make sense of the whole thing....I hope it helps and prayers with you....

 

The Caregiver’s Journey

The caregiver has given time and love in ways that people see and respect, even if they do not fully understand.  But the caregiver has received "gifts" from the dying person: trust and love of a kind rarely experienced, and the dying experience itself.  It is all of this and something more that the caregiver receives. In trying to explain what it is about, one man offered the following analogy that he referred to as "The Journey."

Imagine helping a friend on a journey to a remote monastery perched on top of a mountain.  As you begin your trip, the path is fairly clearly marked and the goal easily seen in the distance. But as you approach, the monastery is often obscured by the tops of trees in the forests through which you pass.  And you say " if only we could get out of this woods, we would be able to see the monastery again and see where we're going."  And as you continue the climb, the path fades and much is accomplished by guesswork. You call on your friend for help.  After all, this is his trip and he should know what he's doing.  But he becomes older and weaker and relies more on you moment by moment.

Things get worse.  You lose the path and you are tired and hungry.  But, he can not proceed alone and you can't leave him on the mountain while you return to the warmth and safety of home.  So, you find a new reserve of strength, enough for both of you, and you continue up the mountain, for now it is your journey, as well. You look at yourself anew and find that you have gown older, become more mature like your friend, and you accept this as part of the mutual trip.  And in accepting your role as guide you find that you are guided, that your friend, whose legs have crumpled beneath him by now, offers you wellsprings of courage and hope. You drink deeply, for you realize that if either of you are to make it to the top, it will need both of you guiding and supporting the other in ways constantly changing and unimaginable.

One day when you least expect it, the heavy cedar gates of the monastery are suddenly dead ahead.  The trip had become the whole purpose, it seemed, and the monastery forgotten. But there it stands: Your friend's objective has been reached The door opens to admit your friend and, as if you had performed the ritual many times before, you hand your friend over the threshold. The door closes, and you stand there numb, alone, bewildered.

Out of habit you continue walking. It doesn't seem to matter in what direction, for each of the possible paths lead back down from the mountain.

The trip down seems easier than the trip up was. The mountain holds few surprises, now, and there is ample time to sit and ponder before reaching the valley below. And somehow in reviewing the trip with your friend, its moments of desperation and fear are overshadowed by the times of giving and accepting, of sharing and journeying together. Memory of the monastery fades and in its place stand crystal images of points along the upward trek. There was the time you picked him up and carried him across the rocks when his strength failed. And there was the time when you slipped and lost your grasp, but he held you up and supported you with the power of his mind. There was something special in those moments, something, which if you could string all of those images together in just the right order, that then, maybe then, you would understand.

As it is, you return to the valley a different person, quieter and stronger, knowing only that you have been a part of something .... holy. This friend shared with you his most personal possession, his death. And though you can't quite comprehend its true value, you find yourself hoping that you will have the ability to fully experience and share your final journey with another wayfarer to whom you can pass on crystal images.

Deep gratitude and celebration are the order of the day for those of us who are called to assist in this challenge.  The suffering, remember, is found only in our refusal to let go, only when we refuse to go through the pain and move to the other side. We get through by going through. The rewards are wonderful: the joy and blessings that come from extending the self beyond its own comfort zone; the knowledge we gain of life and death; the love that is lost and found again on a higher plane; and the areas of awareness that are opened.  Grief is a healing process to be welcomed and not feared, for when it is allowed to go its own course unobstructed, it will fill with wonder the void that the loss created.
 


Merrilee-

I am a cancer surivor who lost my husband to lung cancer so I have been on both sides.  I met a gentleman who had a reoccurrence of pancreatic cancer and his wife while undergoing treatment.  We became very close and I recently received an email from his wife telling me her husband is coming to the end of his journey - and what did she do - how did she deal with watching him go down before her very eyes.  He has given up after fighting a fierce battle for 2 years.  I am going to forward this to her.  I just now read it (Aug 3) but it is at a time I needed it to send her - God has perfect timing!

Diana

 

RE: In Shock

by Dlynn1210 on Mon Aug 03, 2009 12:00 AM

Quote | Reply

 

On 6/9/2009 Dixienh wrote:

     I Moved to Maine to care for my mom who was not yet diagnosed with LSCLC(Limited Small Cell Lung Cancer). This was in Early July of 2008~She was diagnosed with cancer in the latter part of July 2008.After 4 chemo treatments and 20 6min. radiation treatments~her cancer was in remission. However, she still was experiencing PAIN on her left side and radiated to front on the left as well.(Her cancer was in the Lower-Left Lobe of her Left Lung.) This was "baffling" to medical team, as well as myself for her to have continued pain after test results showed remission. The MRI's,CT's Bone Scans,etc. Nobody could ever find out the mysterious left-side pain~

     I did ask doctor's if they thought she might be dying, and they said no. She was losing weight dramatically, and they just loaded her with pain meds and she became a person I did not know~

     I lost my mom on April 24,2009 ~God Bless her~

     The Death Certificate states she died of:  Aspiration Pneumonia due to

Depressed Mental Status ~

     Kind of makes me think she "gave up her fight" from not getting relieved from her pain~ Believe ME! I KNOW how much PAIN she was in~

     My personal mission at this time is to find and meet people who may have some sort of answer as to WHY the pain? The doctor's said it WAS NOT CANCER RELATED~If someone else out there might have a clue~I am all eyes and ears~I have done loads of research, but to no avail.

     In case some would like to know how 'young' she was~69yrs.~She would have been 70 this July~

     Thanks all for reading. If you have lost a loved one,friend or family member due to Cancer~God Bless Them and their families ~Never give up hope~I just know with today's technology, many cancers will actually be "CURED."

                               Keep the Faith and Hope

I lost my husband to lung cancer 15 years ago and I remember how much pain he went through after receiving radiation.  If he was startled by the telephone ringing, he would jump which produced a cry out in pain.  Someone knocking at the door resulted in a cry of pain.  He was confined to bed.  Essentially, any movement resulted in excruciating pain and a cry out (he was a tough former Marine).  The oncologist suspected the cancer had migrated to the bones - which tests proved unfounded.  Finally - finally - finally - after months of pain, we were referred to a radiation oncologist who KNEW the problem.  Within minutes after meeting my husband, he said "Didn't anyone ever tell you that radiation swells your blood vessels?"  Noooo!  "When your blood vessels swell, they press against the nerves".  Reallyyyyyy!  A prescription brought down the swelling within days and resulted in freedom from pain! 

We must remember to take charge of our own bodies.  Doctors and hospitals are humans - they are not all knowing .  If you don't understand or are not satisfied with answers or treatment - get a second opinion or go to another hospital.  The first cancer treatment center I went to was only 8 miles from my home.  It was not cold but the people were more remote - all business so I went to a second treatment center for a second opinion - the Cancer Treatment Center of America in Zion, IL - 80 miles from my home.  They greeted you warmly at the door and the caring continued throughout the hospital with all their personnel - right down to the workers in the cafeteria.  Although the treatment plans were very similar, I chose to go there because of their TOMO therapy which I felt would salvage my salivary glands more than the other type of radiation offered at the first cancer center BUT even more important was the way they treated me - the same as they would a beloved family member.  I am cancer free today and now only have to go back yearly for check ups but it still feels like I am going home.

Diana    

 

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