Gullet (oesophagus) cancer

A support group for anyone affected by gullet cancer (also known as oesophageal cancer) to come together, share experiences and ask questions.

Told today 12 months if my body can take chemo

Chuddy
Posted by

My cancer team met today and I was phoned about 5pm, 30th December 2019. I was told no matter what an operation would never be an option, the lymph nodes are very large surrounding a large tumor in my gullet with liver cancer as a secondary.

I asked how long they think I have and it was explained to me even if my body can take chemo, and it was pointed out my blood results are not good, an operation is not possible and at best if the chemo manages to slow down the spread I could expect 12 months at best, I am completely devastated sat here alone trying to understand what the hell has happened.

I will see a oncologist in the next 2 weeks to discuss what I feel is best for me - what the hell do I do.

When all the tree's have been cut down, when all the animals have been hunted, when all the waters are polluted, when the air is unsafe to breathe, only then will you discover You cannot eat money.
Mybear
Posted by

Hi so sorry .

We are in a similar situation my husband and I went on the 18th December to discover he has thyroid cancer and gullet cancer it's in lymph nodes too.

They had MDT meeting today but not had a call yet .

Our children birthdays are in January and February they will be 15 and 16 years old .

Life can be so cruel but like my husband said and least he can plan what he wants x

I wish you my thoughts and hugs 

Xx

Chuddy
Posted by

Thank you mybear, until my phone call at 5pm today I thought the same as your husband, because before that call I had hope and I had nothing but positive thoughts.

My funeral is sorted so I have nothing to plan the will everything is done before this evil cancer my attitude was I have no fear of death, but sat here alone in a newish town with no friends or family I am scared, I am scared of the way I am going to die.

I have some big decisions to make do I spoil what life I have left with chemo or do I move into the hospice and take it has it comes giving up my dogs and home ? The chemo is not forced to work in giving me 12 months, I felt they was trying to put me off having it saying you are now on palative care and the hospice Will be in touch.

No, when you are told that an operation will never be an option and you only have a chance at 12 months of life if my body can take chemo and the chemo may make matters worse your outlook changes.

I am sorry to hear about your husband, all we can try to do is stay strong.

Alan

When all the tree's have been cut down, when all the animals have been hunted, when all the waters are polluted, when the air is unsafe to breathe, only then will you discover You cannot eat money.
Mybear
Posted by

Hi 

Can you move back near family and friends?

We are not sure of my husband outcome but we do know it's in his lymph nodes. 

Big hugs and stay strong.

Our German shepherd Max is great for cuddles and talking to x

Chuddy
Posted by

I am considering moving near friends but not sure that is the best thing to do by the time this home on the market and seeking another for me and my two dogs it may be a wast of precious time, I am feeling getting involved with the hospice, and I have learnt of other cancers groups within 20 miles from me may be more supportive rather moving a 100 miles away having to get new care team, consultant hospital, I will fight this cancer from here - doing the above will bring friends and get me involved with people who understand.

The hospice Will build support around me now I am in palative care, they will support me in my home with my much loved dog's by my side until the time comes I can no longer cope.

The RSPCA have offered to collect and ensure my dogs will be rehomed to suitable people who will love and care for them.

I am not going to give in to this evil cancer I will build my support.

Regards

Alan

When all the tree's have been cut down, when all the animals have been hunted, when all the waters are polluted, when the air is unsafe to breathe, only then will you discover You cannot eat money.
Mybear
Posted by

Hi Alan

I wish you luck and support .

Glad you have your fur babies xx

BrentS
Posted by

You are not alone tonight there are people reading these post and weeping for you. But they have no words. There are no words.

Counting the days, making every day count.

Brent

Chuddy
Posted by

I am lost for words and confused how my life has been torn apart since 5th December, what the hell has happened I was so happy starting a new life, I have just purchased a touring caravan so me and dogs can enjoy trips together, I have made bookings with the caravan club for all next year, we was going to have the time of our lives - freedom.

That phone call has torn me apart I am laid here with tears running down my face  unable to lay flat in bed because of blood and reflux coming into my mouth.

I have been given no medication to help me, with luck now I am palitive care and the hospice is involved I may get something to relieve the symptoms.

My poor gorgeous dogs they are my world the time is coming for us to lose each other one I have had for over 10 years, who will want him at  his age.

Thank you for your kind words, so pleased I found you people that care.

Alan

When all the tree's have been cut down, when all the animals have been hunted, when all the waters are polluted, when the air is unsafe to breathe, only then will you discover You cannot eat money.
Luv Chox
Posted by

Dear Alan,

I am so sorry you are having to go through this, I wish I could offer you more than words, sending love XX

The smallest act of kindness is worth more than the greatest intention
Chuddy
Posted by

Thank you knowing I am not alone is a comfort having you all hear wishing me well is making me stronger,it's just a shame that love and a strong will to live is not enough.

I hope I have the strength mentally and physically to cope with chemo and just maybe the dogs and me will find some freedom in my caravan tourer and enjoy a couple of trips together or do we skip the chemo and go now whilst I am capable for a couple of weeks, wish it was summer I think I would just go.

Sorry if I am talking nonsense just a little confused and upset.

Thanks for being there

When all the tree's have been cut down, when all the animals have been hunted, when all the waters are polluted, when the air is unsafe to breathe, only then will you discover You cannot eat money.
Luv Chox
Posted by

Dear Alan,

Yes, if only love and a strong will to live were enough to get us through, but I promise that they will definitely help you. Of course it is difficult to make decisions at the moment, but once you have a plan in place it will become clearer. I assume you are in contact with a CNS as part of the hospital team treating you, they are always our first port of call, you must have so many questions, so if you haven't already done so I would suggest you speak to them. Get a plan in place, maybe once you know what sort of chemo they are offering it will help with your decision. not everyone suffers the side effects, quite often it helps by shrinking the tumour allowing ease of swallowing.

Don't ever apologise for "talking nonsense", no one here will ever accuse you of that, say whatever you want, whenever you want, always someone here to listen.

Sending love XX

The smallest act of kindness is worth more than the greatest intention
jayceeh5
Posted by

Hello Alan

There are no magic words or wands that I can offer but please know that you are cared about. It’s hard to imagine the thoughts that must be tumbling through your mind but only you can decide what’s best for you.  

I’m a huge dog lover too and the bond you have with yours sounds special, if they do have to go to a new home they will never forget you, you will always be in their hearts as they are in yours, we can give our pets tangible gifts but what they give us is so much more. 

You are not talking nonsense at all, just keep as strong as you can and post as often as you need to, there’s nearly always someone here.

Very best wishes & big hugs for the dogs.

Miata1941
Posted by

My thoughts?

Ramblings from my empty head??? CANCER!

The BIG 'C'! Everyone has heard of it, no one thinks they will get it? 'A battle for Life'! Shocked when diagnosed! Family cannot believe? Death Sentence? Money! Doctors and Nurses! What will friends say? My family should not go through this? I will beat this! I will fight this! I will win this! My weapons are few? Cancer is huge! Cancer always wins...NOT! Keep optimistic! Don't give up! I am not ready to leave this earth! I will hold out to the end...many years away? It could happen to anyone? We are not immune! There is no cure? What do I do now? Never expected it to be me? Why Me? I now know friends that have it! Treatments, bad or good? What should I do! Prayer...the best! Keep up the humor side of me! My weapons are small? Prayer, medicine, hope, optimism, humor, never give in/up, live one day at a time! I will win! It can be beaten! Strength, though you are weaker! Great support from family and friends! Family sticks together! Treatments now! Radiation, can be awful? Chemo, may be worse? Operation! Many doctor visits! Hospitals I was never used to going to! Money! Bills you never thought were possible! Must have insurance, and do! Still more money to pay out! Several doctor visits per week! Do I feel different? Life goes on? Not bedridden! Cannot tell how I feel mentally or physically! Pretend it is not happening to me? Loosing weight! Sleeping more! Not so much energy now! Looking for good results from tests! Not always good news! Knowing you have a short time on this earth! Hoping for the best! Friends are important! Prayers are very important! Good Wishes are Welcome! They all help! Not wishing this on anyone! Not knowing what tomorrow will bring? Not knowing if you will see your next Birthday? Hoping! Trying to continue as if nothing happened? Life changing disease! No Cure! Try to stay normal mentally and physically...hard to do? Wishing that cancer will be gone from this earth someday! Not wanting your family or friends to go through this, ever! Enjoy the good days! Ignore the bad days! Hard to explain how you feel! Keep family happy! Maybe an operation will help? Maybe not! Maybe not able to have one? Don't loose faith and hope! Hospitals and doctors offices get to be like home...lol! Hoping someday you will be normal again! Hoping the future is brighter with no pain! Good quality of Life is important! It is a hope and dream! Hoping cancer will not spread! No cure, but hoping for many years free! Hoping your family can cope with any results, good or bad! Meeting patients that are worse than you, disturbing! Even though yours may be the worse! Medicines, Ugh! Shots and Blood tests every week or less? Feeling great one day, bad the next! Pretend to be feeling fine for your family and friends! Happy to have so many friends praying and wishing me good wishes! I am grateful to all of you! I may now be looking down upon all of you from a better place(?) without all your help! Looking forward to my 90th Birthday in about 15 years! Sticking with my motto from the beginning: Cancer is not a Death Sentence it is a Will to Live! Sorry, you can all say 'AMEN' now!

James

Miata1941
Posted by

My thoughts!

Ramblings from my empty head??? CANCER!

The BIG 'C'! Everyone has heard of it, no one thinks they will get it? 'A battle for Life'! Shocked when diagnosed! Family cannot believe? Death Sentence? Money! Doctors and Nurses! What will friends say? My family should not go through this? I will beat this! I will fight this! I will win this! My weapons are few? Cancer is huge! Cancer always wins...NOT! Keep optimistic! Don't give up! I am not ready to leave this earth! I will hold out to the end...many years away? It could happen to anyone? We are not immune! There is no cure? What do I do now? Never expected it to be me? Why Me? I now know friends that have it! Treatments, bad or good? What should I do! Prayer...the best! Keep up the humor side of me! My weapons are small? Prayer, medicine, hope, optimism, humor, never give in/up, live one day at a time! I will win! It can be beaten! Strength, though you are weaker! Great support from family and friends! Family sticks together! Treatments now! Radiation, can be awful? Chemo, may be worse? Operation! Many doctor visits! Hospitals I was never used to going to! Money! Bills you never thought were possible! Must have insurance, and do! Still more money to pay out! Several doctor visits per week! Do I feel different? Life goes on? Not bedridden! Cannot tell how I feel mentally or physically! Pretend it is not happening to me? Loosing weight! Sleeping more! Not so much energy now! Looking for good results from tests! Not always good news! Knowing you have a short time on this earth! Hoping for the best! Friends are important! Prayers are very important! Good Wishes are Welcome! They all help! Not wishing this on anyone! Not knowing what tomorrow will bring? Not knowing if you will see your next Birthday? Hoping! Trying to continue as if nothing happened? Life changing disease! No Cure! Try to stay normal mentally and physically...hard to do? Wishing that cancer will be gone from this earth someday! Not wanting your family or friends to go through this, ever! Enjoy the good days! Ignore the bad days! Hard to explain how you feel! Keep family happy! Maybe an operation will help? Maybe not! Maybe not able to have one? Don't loose faith and hope! Hospitals and doctors offices get to be like home...lol! Hoping someday you will be normal again! Hoping the future is brighter with no pain! Good quality of Life is important! It is a hope and dream! Hoping cancer will not spread! No cure, but hoping for many years free! Hoping your family can cope with any results, good or bad! Meeting patients that are worse than you, disturbing! Even though yours may be the worse! Medicines, Ugh! Shots and Blood tests every week or less? Feeling great one day, bad the next! Pretend to be feeling fine for your family and friends! Happy to have so many friends praying and wishing me good wishes! I am grateful to all of you! I may now be looking down upon all of you from a better place(?) without all your help! Looking forward to my 90th Birthday in about 15 years! Sticking with my motto from the beginning: Cancer is not a Death Sentence it is a Will to Live! Sorry, you can all say 'AMEN' now!

James

Chuddy
Posted by

Thank you so much for all your posts giving me friendship and support, it is far beyond my expectations, the  Macmillan community are more like family.

The genuine concern, the genuine care and advice, the time you have taken to give me the feeling of belonging, I have never come across a community like this, I am lost for words - I truly thank you all for helping me cope.

You have been there for me from the 5th December when I was given the diagnosis of cancer, you immediately welcomed me without question and supported me ever since, I know you will be there when ever I need to express my fears without judgement.

Please accept my sincerest best wishes, I wish I could shake you all by the hand.

Alan

When all the tree's have been cut down, when all the animals have been hunted, when all the waters are polluted, when the air is unsafe to breathe, only then will you discover You cannot eat money.