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My wonderful DH has advanced Panreatic Cancer

Discussion in 'Coping and Compassion' started by amandamc8, Sep 12, 2009.

  1. amandamc8

    amandamc8 Earning My Ears

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    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.
     
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  3. antmaril

    antmaril DIS Veteran

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    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.
     
  4. dogodisney

    dogodisney DIS Veteran

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    :hug: I am so sorry. God Bless you all.
     
  5. safetymom

    safetymom Super Moderator

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    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.
     
  6. CarolynU

    CarolynU <font color=CC0000>Proud Mum twice over<br><font c

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    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.
     
  7. minniebeth

    minniebeth <font color=green>I count on y'all to keep me up t

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    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. :hug:

    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.:hug:
     
  8. amandamc8

    amandamc8 Earning My Ears

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    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
     
  9. Pea-n-Me

    Pea-n-Me DIS Veteran

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

    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. :grouphug: :sad1:
     
  10. WebmasterKathy

    WebmasterKathy Administrator Administrator

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    I am so very sorry... :hug:
     
  11. ERICS MUM

    ERICS MUM Mouseketeer

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    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/forums/?tag=pancreatic

    Linda xx
     
  12. Ember

    Ember <font color=blue>I've also crazy glued myself to m

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    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.
     
  13. princessjv

    princessjv DIS Veteran

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    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.
     
  14. RabbitFood

    RabbitFood Mouseketeer

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    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.
     
  15. luvmarypoppins

    luvmarypoppins <font color=darkorchid>I am debating whether to pu

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    :hug: 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.
     
  16. amandamc8

    amandamc8 Earning My Ears

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    Hello again everyone

    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
     
  17. CarolAnnC

    CarolAnnC <font color=blue>Caught Smuggling Jello Shot Syrin

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    I am so sorry to hear of your husband's illness. It is horrific and shocking when young healthy husbands and fathers are struck down at such a time when life should be good for them...

    I hope you can find some comfort and guidance from the sites folks have listed for you above. I would advise seeking some counseling at some point for your daughter, too. My girls were young teens when my husband passed suddenly (massive heart attack) and they adored their dad. Grief counseling did help somewhat for them.

    Like Safetymom said, my girls kept me going, too. It is a rough road to travel, but time does pass and bit by bit things will seem to be better one day. Please visit us here any time you feel the need. My prayers for your husband, you and your family are being said...
     
  18. Pea-n-Me

    Pea-n-Me DIS Veteran

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    I would be happy to brainstorm ideas with you re: ways to improve breathing and promote sleep/rest. (Longtime cardiac nurse.) PM me any time. :hug: :flower3:
     
  19. robinb

    robinb DIS Veteran

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    {{hugs}} to you and your family. My own family just had a bad scare with possible pancreatic cancer and my mother was in the hospital for 4 weeks. We are blessed that she is getting better, but I went through a roller coaster of emotions when I thought I might lose her. She was the one that was there for me and my sister when my father died in an accident when I was 12.
     
  20. goldcupmom

    goldcupmom <font color=black>BL6 Black Team Co-captain<br> <f

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    Praying for all of you! Hold tight to each other & take one day at a time.
     
  21. DutchsMommy

    DutchsMommy <font color=blue>I did the Pirate Name thing<br><f

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    Hi Amanda,

    I am very sorry to hear about your husband's diagnosis. I lost my mom to pancreatic cancer when I was in my teens. I wanted to maybe give you some perspective from your daughters side of things. Of course, I can only speak for me, and hope you dont take this like I am trying to pretend I know your daughter but my mom told my dad she didn't want us to know what was going on, that she wanted us to not have to worry as we were writing exams etc. So, we had no idea how serious things were and I still feel like if I had known maybe I would have had some opportunity to really talk to my mom and share stuff with her. Of course, you and DH need to decide what is best for your family but I would encourage you to bring your daughter into the discussions as you see fit. Hoping the homeopaths ease some of your DHs discomfort and :grouphug: to you.
     

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