terminal cancer

micgrace

Hi all,
Not only do I have to contend with my wife having a stage 3 glioma and me being launched into the unwelcome role of a carer. My Uncle never bothered to find out about a nagging problem, difficulty eating, drinking and a constant near choking feeling which is now terminal as it has metasised into numerous locations. My last surviving uncle as well. He is being looked after elsewhere though. Double trouble. And he is a rather well known personality likely to get a near state funeral in OZ upon death. Sorry, I can't say who. At least my wife got to meet him prior to her admittance to a hospital (and me and my children) and him prior to his admittance to a hospice. Possibly for the last time.

BMGky

Sorry to hear about the
Sorry to hear about the difficulties you and your family are facing. Your wife needs your help so and it is very hard to be a caregiver. At times you feel you can't get up in the middle of the night one more time--but you do, again and again, knowing if they could do it for themselves, they would. Hang in there. Prayers for you all.

dodger21

From Down Under
Hi,
I've never posted here before but have back tracked thru a lot of postings. My grandmother died of EC in the 1980's. Three months ago, due to having numerous bouts of anaemia for no reason I was sent for an endoscopy and colonscopy. They found stage 0 adenocarcinoma. My doctor says I'm the luckiest person alive. I'm 35, female, with no symptoms or reflux. I read everyone elses postings about stage IV and feel dreadful for you. I would love to know about genetics for it.

But the reason for my post is that I would be devastated if your uncle is that lovely actor from Australia who they just announced was admitted to a hospice in Victoria for an undisclosed terminal cancer. If so, your uncle brings a lot of joy to our tv screens and I can't wait for his last movie where he played Bart Cummings to be released. My thoughts are with you and your family

micgrace

dodger21 said:

From Down Under
Hi,
I've never posted here before but have back tracked thru a lot of postings. My grandmother died of EC in the 1980's. Three months ago, due to having numerous bouts of anaemia for no reason I was sent for an endoscopy and colonscopy. They found stage 0 adenocarcinoma. My doctor says I'm the luckiest person alive. I'm 35, female, with no symptoms or reflux. I read everyone elses postings about stage IV and feel dreadful for you. I would love to know about genetics for it.

But the reason for my post is that I would be devastated if your uncle is that lovely actor from Australia who they just announced was admitted to a hospice in Victoria for an undisclosed terminal cancer. If so, your uncle brings a lot of joy to our tv screens and I can't wait for his last movie where he played Bart Cummings to be released. My thoughts are with you and your family

my uncle
No not an actor. He was awarded a Neuman award for mathematics (almost the same level as a Nobel prize). He ran, set and judged the maths olympiad for the best of the best in Australia. Set the dreaded maths HSC in NSW. Many people directly or indirectly throughout our country were influenced by him. He assisted and tutored many students who went on to occupy significant places in Australian society and went on to advise them after completion of school. (I shall not name them here) The number of friends from one end of the earth to the other is amazing. They are from all walks and levels. I am proud to be his nephew but sad to see him end his days this way. At least my wife got to see him prior to her own hospitalisation.

Unknown

dodger21 said:

From Down Under
Hi,
I've never posted here before but have back tracked thru a lot of postings. My grandmother died of EC in the 1980's. Three months ago, due to having numerous bouts of anaemia for no reason I was sent for an endoscopy and colonscopy. They found stage 0 adenocarcinoma. My doctor says I'm the luckiest person alive. I'm 35, female, with no symptoms or reflux. I read everyone elses postings about stage IV and feel dreadful for you. I would love to know about genetics for it.

But the reason for my post is that I would be devastated if your uncle is that lovely actor from Australia who they just announced was admitted to a hospice in Victoria for an undisclosed terminal cancer. If so, your uncle brings a lot of joy to our tv screens and I can't wait for his last movie where he played Bart Cummings to be released. My thoughts are with you and your family

This comment has been removed by the Moderator

micgrace

unknown said:

This comment has been removed by the Moderator

treatment
he has already had stents, rad, and every other treatment known. It has metasised to nearly every part of the digestive system, so is only a matter of time now.

micgrace

micgrace said:

treatment
he has already had stents, rad, and every other treatment known. It has metasised to nearly every part of the digestive system, so is only a matter of time now.

pallitive radiation
My Uncle had a pallitive dose of radiation. That helped immensely with his quality of life although the cancer is still terminal. So much so he was able to be taken out on an outing to that most famous OZ beach, Bondi.

dodger21

micgrace said:

pallitive radiation
My Uncle had a pallitive dose of radiation. That helped immensely with his quality of life although the cancer is still terminal. So much so he was able to be taken out on an outing to that most famous OZ beach, Bondi.

Beach
Micgrace,
it's been beautiful weather here the last few days and not too cold. Bondi would have been beautiful for your uncle. Hope he enjoyed it and is coping as best he can

micgrace

dodger21 said:

Beach
Micgrace,
it's been beautiful weather here the last few days and not too cold. Bondi would have been beautiful for your uncle. Hope he enjoyed it and is coping as best he can

update
My Uncle has managed to make it to JUNE. That is something. He isn't expected to survive much longer. However the pallative dose of radiation bought him a month so far. Unfortunately I would love to see him again but that isn't possible with my wife Grace in hospital with a GBM. However Grace should overcome it unlike my Uncle who left it far too late to do anything about it. But then, maybe he knew and didn't want to alarm anyone. Yes he is truly a great person to many around the world. I will only reveal his name at the appropriate time in respect of his privacy while he is alive.

jojoshort

micgrace said:

update
My Uncle has managed to make it to JUNE. That is something. He isn't expected to survive much longer. However the pallative dose of radiation bought him a month so far. Unfortunately I would love to see him again but that isn't possible with my wife Grace in hospital with a GBM. However Grace should overcome it unlike my Uncle who left it far too late to do anything about it. But then, maybe he knew and didn't want to alarm anyone. Yes he is truly a great person to many around the world. I will only reveal his name at the appropriate time in respect of his privacy while he is alive.

Hope he is comfortable
Glad to hear your uncle is able to enjoy some family time. I hope he is comfortable.

megmacmd

unknown said:

This comment has been removed by the Moderator

Newly diagnosed
Hello I am a 56 year old female( unfortunately a doctor, pediatrician so I know this is not good)I have stage 3 esophageal cancer lower and upper diaphram nodes pelihilar and intraabdominal) In the last 5 years I have buried and hospiced my Dad from bladder cancer, My mom and older sister from breast cancer pretty daunting. But worst was in the midst my solemate from high school husband of 30 years had a cerebral anuresym and dropped dead 3 years ago.I have 3 great children my goal is to get my youngest through college. he is a 2nd year at University of Virginia. My girls are good to go finished college and good jobs. Iam still working have decided not to have surgery risks are way worse than benfits and I dont have anyone to take care of me.From what I read the outcomes are pretty equal and less hospitalized time with just chemo I am otherwise very healthy and think I will just take my chances with chemo. I believe in quality vs quantity of life so far no bad side effect i can swallow again after 6 rounds and no pain.AM pretty overwhelmed since I have no idea how long Ihave 6months 6 years no call on this one very random so one day at a time. Virginia beach is great this time of years lots of parks and outdoor spaces.Any advise sage wisdom would be helpful and welcomed Meg Mac

megmacmd

unknown said:

This comment has been removed by the Moderator

Newly diagnosed
Hello I am a 56 year old female( unfortunately a doctor, pediatrician so I know this is not good)I have stage 3 esophageal cancer lower and upper diaphram nodes pelihilar and intraabdominal) In the last 5 years I have buried and hospiced my Dad from bladder cancer, My mom and older sister from breast cancer pretty daunting. But worst was in the midst my solemate from high school husband of 30 years had a cerebral anuresym and dropped dead 3 years ago.I have 3 great children my goal is to get my youngest through college. he is a 2nd year at University of Virginia. My girls are good to go finished college and good jobs. Iam still working have decided not to have surgery risks are way worse than benfits and I dont have anyone to take care of me.From what I read the outcomes are pretty equal and less hospitalized time with just chemo I am otherwise very healthy and think I will just take my chances with chemo. I believe in quality vs quantity of life so far no bad side effect i can swallow again after 6 rounds and no pain.AM pretty overwhelmed since I have no idea how long Ihave 6months 6 years no call on this one very random so one day at a time. Virginia beach is great this time of years lots of parks and outdoor spaces.Any advise sage wisdom would be helpful and welcomed Meg Mac

Joel C

megmacmd said:

Newly diagnosed
Hello I am a 56 year old female( unfortunately a doctor, pediatrician so I know this is not good)I have stage 3 esophageal cancer lower and upper diaphram nodes pelihilar and intraabdominal) In the last 5 years I have buried and hospiced my Dad from bladder cancer, My mom and older sister from breast cancer pretty daunting. But worst was in the midst my solemate from high school husband of 30 years had a cerebral anuresym and dropped dead 3 years ago.I have 3 great children my goal is to get my youngest through college. he is a 2nd year at University of Virginia. My girls are good to go finished college and good jobs. Iam still working have decided not to have surgery risks are way worse than benfits and I dont have anyone to take care of me.From what I read the outcomes are pretty equal and less hospitalized time with just chemo I am otherwise very healthy and think I will just take my chances with chemo. I believe in quality vs quantity of life so far no bad side effect i can swallow again after 6 rounds and no pain.AM pretty overwhelmed since I have no idea how long Ihave 6months 6 years no call on this one very random so one day at a time. Virginia beach is great this time of years lots of parks and outdoor spaces.Any advise sage wisdom would be helpful and welcomed Meg Mac

Hi Meg,
Sorry to hear of
Hi Meg,

Sorry to hear of your diagnoses and all you’ve been thru. I was diagnosed July 2010 with stage 2 (T2N1M0) EC (49 yo). So like you I had nodal involvement. And also like you when I first got the diagnoses I researched the numbers and questioned what value there was in having the surgery. In fact I didn’t even want to have chemo or radiation based on what I read. I did however move forward with the trimodal approach. I have two great children in college and if it weren’t for them and the never give up attitude of my wife I never would have done it. Six months out from surgery and things are getting back to normal, well a new normal. I hope you research the MIE surgery and give it more consideration. If you are a candidate for surgery I honestly believe chemo/radiation followed by surgery gives you your best chance. I’m sure recently losing your husband makes this fight almost unbearable but perhaps you can pull strength from the fact that your children need you and so will their children. My wife was working full time when I came home from surgery and I really didn’t want a visiting nurse so I took care of myself. It was a bit of a challenge but it can be done.

Regards,
Joel

micgrace

jojoshort said:

Hope he is comfortable
Glad to hear your uncle is able to enjoy some family time. I hope he is comfortable.

comfortable
He is getting the best possible care available befitting his status. Many people from around the world and OZ visit him on a daily basis. There are a great many people he has helped throughout the years however for him his family still comes first. The cancer had metasised in numerous locations hence it is terminal. However he is determined to meet in person with everyone he ever knew before going.

Unknown

megmacmd said:

Newly diagnosed
Hello I am a 56 year old female( unfortunately a doctor, pediatrician so I know this is not good)I have stage 3 esophageal cancer lower and upper diaphram nodes pelihilar and intraabdominal) In the last 5 years I have buried and hospiced my Dad from bladder cancer, My mom and older sister from breast cancer pretty daunting. But worst was in the midst my solemate from high school husband of 30 years had a cerebral anuresym and dropped dead 3 years ago.I have 3 great children my goal is to get my youngest through college. he is a 2nd year at University of Virginia. My girls are good to go finished college and good jobs. Iam still working have decided not to have surgery risks are way worse than benfits and I dont have anyone to take care of me.From what I read the outcomes are pretty equal and less hospitalized time with just chemo I am otherwise very healthy and think I will just take my chances with chemo. I believe in quality vs quantity of life so far no bad side effect i can swallow again after 6 rounds and no pain.AM pretty overwhelmed since I have no idea how long Ihave 6months 6 years no call on this one very random so one day at a time. Virginia beach is great this time of years lots of parks and outdoor spaces.Any advise sage wisdom would be helpful and welcomed Meg Mac

This comment has been removed by the Moderator

jojoshort

micgrace said:

comfortable
He is getting the best possible care available befitting his status. Many people from around the world and OZ visit him on a daily basis. There are a great many people he has helped throughout the years however for him his family still comes first. The cancer had metasised in numerous locations hence it is terminal. However he is determined to meet in person with everyone he ever knew before going.

Caring people
I smiled a bit when I read your post about your uncle being "determined to meet in person with everyone he ever knew before going". My husband is Stage IVb and he is just one of those people who finds and keeps friends due to his lovely personality. Our life has been a real social whirl since we got the diagnosis--in fact, right now he is sailing off the New England coast with a friend for the day . It really keeps him going and takes him away from thinking about himself and his disease. I hope your uncle is also finding solace in those who are his friends and those who think highly of him. What a tribute to a life well lived.

K_ann1015

megmacmd said:

Newly diagnosed
Hello I am a 56 year old female( unfortunately a doctor, pediatrician so I know this is not good)I have stage 3 esophageal cancer lower and upper diaphram nodes pelihilar and intraabdominal) In the last 5 years I have buried and hospiced my Dad from bladder cancer, My mom and older sister from breast cancer pretty daunting. But worst was in the midst my solemate from high school husband of 30 years had a cerebral anuresym and dropped dead 3 years ago.I have 3 great children my goal is to get my youngest through college. he is a 2nd year at University of Virginia. My girls are good to go finished college and good jobs. Iam still working have decided not to have surgery risks are way worse than benfits and I dont have anyone to take care of me.From what I read the outcomes are pretty equal and less hospitalized time with just chemo I am otherwise very healthy and think I will just take my chances with chemo. I believe in quality vs quantity of life so far no bad side effect i can swallow again after 6 rounds and no pain.AM pretty overwhelmed since I have no idea how long Ihave 6months 6 years no call on this one very random so one day at a time. Virginia beach is great this time of years lots of parks and outdoor spaces.Any advise sage wisdom would be helpful and welcomed Meg Mac

suggestion:
Hi Megmacmd,

Sorry - that you have had to find this site...all of us here have had to as well--either for family members, friends or ourselves.

I have too seen the studies that have said that chemo & surgery results are similar. I do not not have nearly the amount of education that you have-I am a physical therapist-daughter & niece of EC patients). But, when I see those results--I have many questions---about age, stage, health, social support etc of the person with EC. I think that when you group ALL of the cases together--it probably appears to be a wash. But, I have yet seen a EC 5 year SURVIVOR that has not had surgery----please folks out there--let me know if this is just an anecdotal observation!!!

William is not a physician either, but he and his wife Loretta have devoted many YEARS to helping folks on this site through extensive research & sharing. I would highly recommend you reach out to him.

MY REASONS: --
1-it can not hurt your situation
2-you will feel better to know that you are NOT alone
3-you may also see that it is OK to be a little vulnerable...(you are so used to having to take care of so much and so many around you)
4-you might discover options that you never realized that you had!
5 - YOU & YOUR CHILDREN DESERVE A CHANCE TO BEAT THIS!

I know you know the "odds"- as I do for my dad. But my dad did not and has done better than the odds--2 1/2 years post a stage 3 diagnosis of EC, and he is in his early 70's--was very healthy too!--

apologize if I seem pushy--I usually never am---the folks on this site can attest to that
Kim

micgrace

update on Uncle
The pallative radiation has worn off and the stools are now coming out black. Expected time any day now. Really sad as I must deal with double grief. My wife and my last uncle. My wife is real close to the edge as well.

micgrace

update on Uncle
The pallative radiation has worn off and the stools are now coming out black. Expected time any day now. Really sad as I must deal with double grief. My wife and my last uncle. My wife is real close to the edge as well.

I must remind myself NOT to double click and post twice. Silly me.

sandy1943

megmacmd said:

Newly diagnosed
Hello I am a 56 year old female( unfortunately a doctor, pediatrician so I know this is not good)I have stage 3 esophageal cancer lower and upper diaphram nodes pelihilar and intraabdominal) In the last 5 years I have buried and hospiced my Dad from bladder cancer, My mom and older sister from breast cancer pretty daunting. But worst was in the midst my solemate from high school husband of 30 years had a cerebral anuresym and dropped dead 3 years ago.I have 3 great children my goal is to get my youngest through college. he is a 2nd year at University of Virginia. My girls are good to go finished college and good jobs. Iam still working have decided not to have surgery risks are way worse than benfits and I dont have anyone to take care of me.From what I read the outcomes are pretty equal and less hospitalized time with just chemo I am otherwise very healthy and think I will just take my chances with chemo. I believe in quality vs quantity of life so far no bad side effect i can swallow again after 6 rounds and no pain.AM pretty overwhelmed since I have no idea how long Ihave 6months 6 years no call on this one very random so one day at a time. Virginia beach is great this time of years lots of parks and outdoor spaces.Any advise sage wisdom would be helpful and welcomed Meg Mac

Hello Megmac. I was
Hello Megmac. I was diagnosed in Nov.2007 with T3N2M0 at the age of 64. I had very aggressive pre-opt chemo, but no radiation. Since my surgery in may,2008 I have tested NED. The surgery is a tough one, and I had the Ivor Lewis, but I personally feel it is a life savor. No one can make your decisions for you and everyone one responds to treatment differently, But listen and study the wisdom on this site, of the ones that have been down that road, before making the decision to not have surgery.
I want to add that I'm in better shape physically now than before. Because of my weight loss, I am no longer concidered diabetic, do not have high blood pressure and my cholestrol is good. I know I am just at the three year mark, and I don't know what God's desires are for me, but I do know after all that I've been through, I'd do again.
Sandra

micgrace

megmacmd said:

Newly diagnosed
Hello I am a 56 year old female( unfortunately a doctor, pediatrician so I know this is not good)I have stage 3 esophageal cancer lower and upper diaphram nodes pelihilar and intraabdominal) In the last 5 years I have buried and hospiced my Dad from bladder cancer, My mom and older sister from breast cancer pretty daunting. But worst was in the midst my solemate from high school husband of 30 years had a cerebral anuresym and dropped dead 3 years ago.I have 3 great children my goal is to get my youngest through college. he is a 2nd year at University of Virginia. My girls are good to go finished college and good jobs. Iam still working have decided not to have surgery risks are way worse than benfits and I dont have anyone to take care of me.From what I read the outcomes are pretty equal and less hospitalized time with just chemo I am otherwise very healthy and think I will just take my chances with chemo. I believe in quality vs quantity of life so far no bad side effect i can swallow again after 6 rounds and no pain.AM pretty overwhelmed since I have no idea how long Ihave 6months 6 years no call on this one very random so one day at a time. Virginia beach is great this time of years lots of parks and outdoor spaces.Any advise sage wisdom would be helpful and welcomed Meg Mac

quality of life
I know my uncle refused ops and went for radiation and chemo instead. He is still very lucid although he has to strain to say anything now. His mind is still incredibly sharp. I suppose that gives a good quality of life and he has survived from December last year so far. For me if I had it I would go for the chemo and rads. unless the surgery provided an immediate advantage.