Disney Information Station Logo

Go Back   The DIS Discussion Forums - DISboards.com > Just for Fun > Coping and Compassion
Find Hotel Specials & DIScounts
 
facebooktwitterpinterestgoogle plusyoutubeDIS UpdatesDIS email updates
Register Chat FAQ Tickers Search Today's Posts Mark Forums Read





Reply
 
Thread Tools Rate Thread Display Modes
Old 09-12-2009, 06:03 AM   #1
amandamc8
Earning My Ears
 
amandamc8's Avatar
 
Join Date: Apr 2008
Location: 'The Shires' - England
Posts: 62

My wonderful DH has advanced Panreatic Cancer

Please forgive my long rant, but there’s a lot to get off my chest…

At the end of March my lovely husband, 40-year-old Miles, blacked out following a coughing fit. We went to see his GP who checked him over and says that all is well, and that the cough was just a ‘winter thing’ – even though he hadn’t even had a cold. The GP referred him to neurologist, and on May 18th we see as specialist who says that the passing out is due to cough syncope and that Miles needs to return to the GP to get his cough sorted. So, we go back to the GP, who diagnoses hiatus hernia, as miles is now also having indigestion pain and has lost weight, and he says that this is also causing the cough. He prescribes antacid meds and sends Miles for a chest x-ray for peace of mind.

Later the following week, Miles returned to his GP as his abdominal pain was getting worse. The GP is unconcerned about his pain, but tells us that the chest x-ray results are back and that they show signs of pulmonary fibrosis. Miles’ stomach problems are now diagnosed as acid reflux, which is common amongst people with PF, and also that this is why he has lost weight. The GP sends him for a CT scan. It takes 3 weeks to get the CT appointment (the hospital did not receive the request from the GP), and meanwhile, miles returned to his GP 3 times as his stomach pain was getting worse.

The CT took place on July 7th and on July 10th we were called to the respiratory dept as the scan showed traumatic scarring. Miles is told about the treatment for pulmonary fibrosis and referred to a thoracic surgeon for a lung biopsy to find the cause of the fibrosis. Meanwhile, Miles continues to see his GP with increasing abdominal pain and weight loss. We asked 2 GPs and the respiratory specialist if the pain could be to do with his pancreas, but were dismissed each time – even though the specialist said that the CT scan showed some pancreatic atrophy.

Miles’ biopsy took place on July 25th, and on August 5th we are told completely out of the blue that they had found a tumour in his lungs that had proved to be cancerous. We are told that surgery isn’t an option as the damage is spread across both lungs, but that oncology would be in touch to discuss chemotherapy. We waited for another week and returned to see the same consultant who then told us that the lungs were not the primary site of the cancer, and that another CT scan was needed to try and establish the area of the primary. On August 19th we were told that the scan had shown a 2.4cm mass in Miles’ pancreas and that a MDT meeting was taking place the next day to discuss a course of action.

On Thursday 20th August I received a phone call from a nurse specialist telling me that Miles has pancreatic cancer, and that it has already spread to his lungs, stomach and peritoneal cavity – and that there is nothing at all that can be done. Our Macmillan nurse came to see us the next day and explained that Miles is not fit enough to try chemotherapy, and broke the news that Miles hasn’t got long left, and that we shoulb be thinking in terms of weeks not months.

It’s all happened so suddenly, and we are really struggling to take it all in. I just don’t know where to start. Our daughter is 16 in November and I am 40 in January, only a few weeks ago we were busy trying do decide how to celebrate, now it seems highly unlikely that Miles will see either of them. Miles has never smoked, rarely drinks alcohol and has been very fit and active all his life. He was still working in mid-July, how can everything change so suddenly? I know that I need to stay strong for our daughter, but I don’t know where to find that strength from.
__________________
DVC Member SSR, AKL, BWV & VB - DLP 1992-2012 - DLH, NBC, SL, HNY - too many times to count!
2005 CBR - 2007 POFQ - 2008 BC, Bahamas on the Wonder & SSR - 2009 OKW - 2010 AKL, Med on the Magic, & SSR
2011 SSR, Med on the Magic, BWV, & VB -
2012 CSR, GCH, Alaska on the Wonder, BWV, AKL & NYE on the Dream!
xx In loving memory of my wonderful Husband Miles 1968-2009 Gone but never, ever forgotten... We miss you so much xx



amandamc8 is offline   Reply With Quote
Old 09-12-2009, 07:35 AM   #2
antmaril
DIS Veteran
The elephant topiaries near MK have a special meaning for me
I'm a girl
 
antmaril's Avatar
 
Join Date: Apr 2001
Location: Michigan
Posts: 6,984

I am so sorry you and your husband are going through this. I lost my beloved husband, Mat, to pancreatic cancer on July 7, 2008 after an eight month battle. Mat was 55 when he passed. He, too, was fit and healthy. His diagnosis came as a complete shock to us. We had a different situation since Mat went to the emergency room because he was weak, had lost weight without trying and his eyes were turning yellow. He had a CT Scan and we were told that night that he had a tumor on his pancreas.

I will keep you and your husband in my thoughts and prayers at this difficult time.
antmaril is offline   Reply With Quote
|
The DIS
Register to remove

Join Date: 1997
Location: Orlando, FL
Posts: 1,000,000
Old 09-12-2009, 08:02 AM   #3
dogodisney
DIS Veteran
 
dogodisney's Avatar
 
Join Date: Mar 2008
Location: Georgia
Posts: 3,150

I am so sorry. God Bless you all.
__________________
CBR 6/06 ---- POR 9/08 ---- RPR@ Universal 9/09 ----POR 12/09----CSR 9/11
dogodisney is offline   Reply With Quote
Old 09-12-2009, 09:37 AM   #4
safetymom
Have will travel
ABD trips = clothes optional
 
Join Date: Aug 2001
Location: Now living near the parks!
Posts: 42,083

I am so sorry for all of you. All you can do is take life minutes at a time. I know when my husband died that was all I could handle. If I tried to think any further than that I had issues.

My husband died when I was 42. I had 3 children and believe me they were the reason I got up every day. It isn't easy but be easy on yourself.

You will find talking about what you are dealing with really does help. I will keep you all in my prayers.
safetymom is offline   Reply With Quote
Old 09-12-2009, 03:44 PM   #5
CarolynU
Proud Mum twice over
The TF enjoys making people stare at the screen in amazement! :)
The TF thanks Carolyn!
 
Join Date: Feb 2002
Location: Kent
Posts: 1,128

I try to understand the logic behind stories like this but fail miserably. It just seems so sad. A young fit husband and father who had everything to live for. Why? You must all be asking the same question, and my thoughts are with you as you struggle to find the answers. I wish that I could be of more help. I'm just so sorry.
CarolynU is offline   Reply With Quote
Old 09-12-2009, 05:48 PM   #6
minniebeth
I count on y'all to keep me up to date ;)
I'm ok going up, just can't go down...
 
minniebeth's Avatar
 
Join Date: Feb 2006
Location: columbus, ohio
Posts: 7,949

amandamc8, I'm so so sorry to hear of your news. You, your DH and DD will be in my thoughts and prayers every, every day...there are no words to say in the time of your need that will make things better, other than to know others like myself are praying for you.

antmaril, safetymom, my heart goes out to you too for the path that life has taken you on... I lost my dad when I was 7 and can't imagine what it was like for my mom to have lost her husband and take care of her 3 children as well too.
__________________
minniebeth




Avenger's 1/2 Marathon!
minniebeth is offline   Reply With Quote
Old 09-13-2009, 08:39 AM   #7
amandamc8
Earning My Ears
 
amandamc8's Avatar
 
Join Date: Apr 2008
Location: 'The Shires' - England
Posts: 62

thank you everyone

Thank you all for your kind words of support - it helps to be able to share what we are all going through. Life is so very unfair sometimes and it is so hard to keep going. We were such a happy family...

We have always spent as much quality time together as family as we could and we have some wonderful memories. Miles wants us to carrry on doing all of the things that we have always loved, and he says that he will be right there with us in spirit. I just can't imagine ever wanting to do anything again - we always did everything together. I just can't take it all in. He is being so strong, and I try so hard, but when he is sleeping and I am alone I just fall apart. I can't believe there is nothing that can be done to try and help him.

We have asked for a second opinion and we have a referal to Christies cancer hospital which should mean we have an appointment very soon. It's not that we are holding out for a better diagnosis, but the GI team at our hospital dismissed Miles as being to ill for any treatment without even bothering to meet him. They asked to see me, but they have never even seen Miles, and it would be good to know that the people making decisions about his care have at least examined him and talked things through with him.
I suppose it's just too hard to accept that they won't even try to do something to give him a little more time...

Thanks again for your replies. I don't really have anyone that I can talk too openly - everyone wants to help, but they can't cope with me when I am emotional. I think it must be the british 'stiff upper lip' thing...

Amanda
__________________
DVC Member SSR, AKL, BWV & VB - DLP 1992-2012 - DLH, NBC, SL, HNY - too many times to count!
2005 CBR - 2007 POFQ - 2008 BC, Bahamas on the Wonder & SSR - 2009 OKW - 2010 AKL, Med on the Magic, & SSR
2011 SSR, Med on the Magic, BWV, & VB -
2012 CSR, GCH, Alaska on the Wonder, BWV, AKL & NYE on the Dream!
xx In loving memory of my wonderful Husband Miles 1968-2009 Gone but never, ever forgotten... We miss you so much xx



amandamc8 is offline   Reply With Quote
Old 09-13-2009, 10:13 AM   #8
Pea-n-Me
Survivor
Call me crazy but I prefer the single bath
Nothing beats the Magic of a Disney Resort!
Will DIS from the Potty
Alice, how's it hanging?
 
Pea-n-Me's Avatar
 
Join Date: Jul 2004
Location: Southeastern Coast of Massachusetts
Posts: 21,815

This is a very sad story and I can't imagine how you must be feeling. I am keeping you all in my prayers.

Quote:
Originally Posted by amandamc8 View Post
We have asked for a second opinion and we have a referal to Christies cancer hospital which should mean we have an appointment very soon. It's not that we are holding out for a better diagnosis, but the GI team at our hospital dismissed Miles as being to ill for any treatment without even bothering to meet him. They asked to see me, but they have never even seen Miles, and it would be good to know that the people making decisions about his care have at least examined him and talked things through with him.
I suppose it's just too hard to accept that they won't even try to do something to give him a little more time...
And that is the crux (for me) of some of these discussions we have surrounding health care here in the US.

Here, right now, your DH, first of all, would have probably been diagnosed much earlier. Like with auntmaril's DH, he would have had a CT soon after his first, but certainly after his continued complaints of abdominal pain. And then the fight would have started. It might have bought him some time. At least the option to try is almost always there. (Especially for someone so young with a young family.) I don't know that it will be in the future.

I hope you don't mind my thoughts on this, but I have to think you posted details because you are somewhat bewildered and angered about how this went down for you. I think you have the right to be. It's very hard to go through this for months and months without an answer; finally be told there are no options; and then to know you have to look back on it for the rest of your life.

FWIW, as you know I'm sure, pancreatic cancer is one of the really tough ones. They know this from looking back on statistics of others who have it - how long they lived, how they responded to treatment, etc. Not just in the UK, but worldwide. And they generally make decisions based on what they know about that along with the specifics of any one case. Your husband's case truly may be extremely, extremely advanced (which it sounds as if it is) and treatment of any kind may not only not help, but may harm him. But it certainly would be nice if they actually saw and evaluated him and heard what he had to say, what his desires are, etc, before they made their final decisons about his care.

You're in my thoughts today.
__________________



Post your best iPhone/smartphone pictures here!

All Star Music 2001/Polynesian Lagoon View Concierge 2002/Contemporary 2003/Disney Wonder 2003/Yacht Club and Disney Wonder 2004/Pop Century 2005/Dolphin and Pop Century MNSSHP 2005/Disney Magic and Pop Century 2006/Coronado Springs MNSSHP 2006/Dolphin and Disney Wonder 2007/Port Orleans Riverside 2008/Caribbean Beach 2009/Dolphin and Animal Kingdom Lodge Concierge 2011/Grand Floridian and Dolphin, MNSSHP 2013
Pea-n-Me is offline   Reply With Quote
Old 09-13-2009, 11:52 AM   #9
WebmasterKathy

Not Podcast Kathy, I'm the other one
Bring on the tequila and chocolates!
 
WebmasterKathy's Avatar
 
Join Date: Mar 2002
Location: Texas
Posts: 20,538
DISboards Administrator

I am so very sorry...
__________________
WebmasterKathy is offline   Reply With Quote
Old 09-13-2009, 06:31 PM   #10
ERICS MUM
Mouseketeer
 
ERICS MUM's Avatar
 
Join Date: Aug 2005
Location: ESSEX, UK
Posts: 174

Quote:
Originally Posted by amandamc8 View Post
Thank you all for your kind words of support - it helps to be able to share what we are all going through. Life is so very unfair sometimes and it is so hard to keep going. We were such a happy family........
Thanks again for your replies. I don't really have anyone that I can talk too openly - everyone wants to help, but they can't cope with me when I am emotional. I think it must be the british 'stiff upper lip' thing...Amanda
Hi Amanda,

I'm so sorry to hear about your husband and I wish for you and your family to find strength for the difficult times.

Have you found the MacMillan website ? It has a very active forum and I feel you would find it helps to "talk" to other people in similar circumstances:

http://share.macmillan.org.uk/share/...tag=pancreatic

Linda xx
ERICS MUM is offline   Reply With Quote
Old 09-13-2009, 09:18 PM   #11
Ember
I've also crazy glued myself to many things
I'm calling it a victory. At least until next time
 
Join Date: Aug 2005
Posts: 3,260

Cancer is a horrible, horrible thing. I'm so very sorry for you and your family. Facing things like this is so hard and you'll be in my thoughts.
Ember is offline   Reply With Quote
Old 09-13-2009, 11:13 PM   #12
princessjv
DIS Veteran
 
princessjv's Avatar
 
Join Date: Jul 2005
Location: MN
Posts: 3,066

I am so very sorry for what you are going through. Spend the remaining time together, cherishing what you have, for as long as time will give your family.
__________________
Proud Mom to 2 great kids & Loving life!

princessjv is offline   Reply With Quote
Old 09-13-2009, 11:32 PM   #13
RabbitFood
Mouseketeer
 
RabbitFood's Avatar
 
Join Date: Jun 2008
Posts: 337

I am so very sorry for what you're going through.

Please know that misdiagnosis/delayed diagnosis is not unusual for this disease. It has nothing to do with your health care. In fact, someone very dear to me was just diagnosed with pancreatic cancer here in the US after five long months of symptoms, pain, and being told by many doctors that it was GIRD, or an ulcer, or IBS. He even had an MRI as recently as May that supposedly showed nothing abnormal, although there were "suspicious" lesions on his liver.

Pancreatic cancer is an evil, evil disease that offers few symptoms and is often missed by doctors.

We've found this website: www.pancan.org to be very helpful. Check out Patient Services/Inspiration for messages of hope.

I will be holding you and your family and in my heart.
RabbitFood is offline   Reply With Quote
Old 09-14-2009, 09:13 AM   #14
luvmarypoppins
I am debating whether to put a new one back on his
O.K. who is the sista here right now?
((Hug))
 
Join Date: Aug 2003
Posts: 9,968

I am so sorry that you and your dh have to go through this journey. I pray each and every day will be precious to your family. I always just wake up and say, thank you God for today. Its just one day at a time and I know cancer is just so tough, I say to myself, I just have to fight a little tougher. I pray for Gods peace for you in the coming days. And I will also pray that you can find a dr. who will consider your wishes etc. Blessings to you.
luvmarypoppins is offline   Reply With Quote
Old 09-15-2009, 05:42 AM   #15
amandamc8
Earning My Ears
 
amandamc8's Avatar
 
Join Date: Apr 2008
Location: 'The Shires' - England
Posts: 62

Thank you everyone...

Hello again everyone

Quote:
Originally Posted by ERICS MUM View Post
Have you found the MacMillan website ? It has a very active forum and I feel you would find it helps to "talk" to other people in similar circumstances:

http://share.macmillan.org.uk/share/...tag=pancreatic

Linda xx
I have found the macmillan site Linda, in fact the link that you shared goes to my post... I have a couple of lovely e-friends from that site and we try and help eachother through. But oddly, I have found more comfort from you all here.

And the pancan.org website has some wonderful information, thank you Rabbitfood!

We had a visit last night from a Homeopath that another member of the family has benefitted from, he has given us something that might help with Miles' breathing - which is the thing that is causing him problems really. The scan that he had back in July revealed he had lost 50% of his lungs to scarring, so he is doing so well to cope in the way he has been doing... We are very open to holisitic therapies and anything that gives Miles a sense of peace can only be a good thing...

Thank you for all your thoughts and prayers. We feel very isolated at the moment and the contact I have had from you all has become a bit of a life line for me. It's a wonderful way to support people, thank you so much.

Amanda xx
__________________
DVC Member SSR, AKL, BWV & VB - DLP 1992-2012 - DLH, NBC, SL, HNY - too many times to count!
2005 CBR - 2007 POFQ - 2008 BC, Bahamas on the Wonder & SSR - 2009 OKW - 2010 AKL, Med on the Magic, & SSR
2011 SSR, Med on the Magic, BWV, & VB -
2012 CSR, GCH, Alaska on the Wonder, BWV, AKL & NYE on the Dream!
xx In loving memory of my wonderful Husband Miles 1968-2009 Gone but never, ever forgotten... We miss you so much xx



amandamc8 is offline   Reply With Quote
Reply



Thread Tools
Display Modes Rate This Thread
Rate This Thread:

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

Similar Threads
thread Thread Starter Forum Replies Last Post
I Dragged a Grumpy DH Back to the World and He (Kinda) Liked It...10/29 UPDATE!! WDWRocksMySocks Completed Trip Reports 113 12-11-2009 04:52 PM
My DH went to Orlando & all I got was a T-shirt :) Maridw Community Board 0 09-11-2009 08:06 PM
Is there any benefit to booking my WDW package as far in advance as I possible? OFF TO WDW! Disney Resorts 8 09-11-2009 12:13 PM
Help me calm DH down about making reservations Vickis3js Universal Studios/Islands of Adventure Forums 7 09-11-2009 08:29 AM
How far in advance can I book restaurants? sweetiepie71 Disneyland Paris Trip Planning & Community Board 3 09-11-2009 07:55 AM

facebooktwitterpinterestgoogle plusyoutubeDIS Updates
GET OUR DIS UPDATES DELIVERED BY EMAIL



All times are GMT -5. The time now is 01:32 PM.

Powered by vBulletin® Version 3.8.4
Copyright ©2000 - 2014, Jelsoft Enterprises Ltd.

Copyright © 1997-2014, Werner Technologies, LLC. All Rights Reserved.