My wonderful DH has advanced Panreatic Cancer

[Mskanga]

Amanda I am so sorry that you are dealing with this monster but I am urging you to get a second opinion , you have nothing to lose.

My daughter was diagnosed with bone cancer at age 14 , thankfully she is now 16 and doing great. You will get your strength from your daughter......but you will have your moments, heck I still get my moments and I am 18 months out of chemo with my daughter.

My prayers are with you.

 

[Mackey Mouse]

Amanda.....just a quick reply from me here as I am in the middle of caring for my Tommy... who has been battling Pancreatic Cancer for 5 years. Last night was a tough night for this family as each time we lose someone famous to this dreaded cancer, it just about sets off anger, annoyance, fear and the list goes on.

My husband's PC is in his lungs....he never had it in his pancreas but rather in the ampula vater which is in the duodenum section of the stomach.....He had surgery, and when they sampled his lymph nodes it was present in 5 of the 13which meant we did not get there early enough..

He has battled with chemo's, radiation, surgeries.. you name it we have done it and yet we are right where you are now, the only blessing is we did have 5 years...but most of them were spent battling, sick, recovering... etc.

Clearly the issue is not enough research done for this kind of cancer and so they do not see to have early detection for it... we found it by chance on a routine test.

The fact that Miles is so young is grossly unfair but it always upset me when people said to me they were sorry.. this is just me. I would take what time you have and live each second as if it were a blessing from God... I wish I were more religious...if you have great faith, call on that to get you through and I also found it was the kindness of strangers, not necessarily family, that gets me through each day..

I belong to a caregivers' group....it is cancercare.org, I do not know what I would have done without these courageous caretakers....right now the Pancreatic group will be on hiatus until October 1....but I am here for you. If you have questions or want to talk by email, just pm me and I will give you that information. Stay strong, listen to your oncologist, and most of all take your cues from Miles on how he is doing each day and how strong he feels..

I take it one day at a time and I think we will be calling in hospice soon, it is what it is, we had a great run and now it is about giving him comfort and no pain.. We have no more treatments to try, we have done them all.....this cancer just does not quit...I sometimes refer to it as the evil beast....

I only hope that someday someone influential, important, God knows I have written Oprah and others have as well, will put their face to help with fundraising so that we can get more research done and maybe save more people in the future..

Hugs,
Marsha

 

[lookingforward]

My thoughts and prayers are with your husband, you and family. Please know that you are not alone and that we are sending caring thoughts to you all.

 

[amandamc8]

Hi everyone - thanks so much for all of your messages of support. Well, it is now four weeks since we recieved the awful 'phonecall that was to change our lives forever... Miles is still fighting hard and we are trying everything we can to help us to make the most of everyday.

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.

Thanks for this DutchsMommy. As a family, we have always been really close and honest with eachother, so my Daughter has been involved in every step of this journey - right from when we first learned about the scarring on Miles' lungs. It was so hard to tell her that there was nothing that could be done to help her Dad, but we promised that she would always be the first to know how things were developing. She knows how precious every minute is... I hope we have done the right thing, it sounds like you might think that we have...

I would take what time you have and live each second as if it were a blessing from God... I wish I were more religious...if you have great faith, call on that to get you through and I also found it was the kindness of strangers, not necessarily family, that gets me through each day..

Marsha, my thoughts are with you and your family at this difficult time, I hope that you are able to find some peace. I too wish that I did have strong faith to comfort me, sadly I do not... but luckliy for me, I have many strangers who are helping me through each day - and I am so grateful to you all...

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.

I have found support thanks CarolAnn - especially from the good people here on this thread. My daughter has seen a counsellor at school today (they arranged the visit and gave her the option of going to the session) but she says she found it more distressing than useful... The counsellor asked her how long she thought her Dad was going to live for, and if she thought that she would still have contact with her Dad's family after he was gone! I was disappointed at best and a little angry to be honest...It doesn't sound like they called in the right people at all!

Anyway, on a more positive note, I have arranged for Miles to have a Reiki session tomorrow morning, and we are both having reflexology in a few days. It should help us to feel less stressed if nothing else...

As the saying goes, today is a gift - that's why they call it the present. It is received with great thanks and I'm going to make the most of every minute of it with my wonderful husband when he wakes up... Thanks again to everyone for your messages - I can't tell you how much you have all helped.

Amanda

 

[safetymom]

I can remember when the school called me in for a conference for counselling for my kids after my husband died. I told them we had been honest with the kids along the way and they were shocked. My kids tried counselling and found it upsetting. We continued to talk about what was bothering them along the way and they all turned out ok. I will admit it was rough going more than a few times but I have 3 well adjusted young adults now.

You will know what is right for your family.

 

[PrincessKsMom]

I'm so sorry your family is facing this beast.

 

[frdeb1999]

You and your family will be in my thoughts and prayers. Cancer is such a horrible thing.

 

[seaprincess]

My thoughts and prayers are with you. I know only too well how you feel. My dear husband was diagnosed with terminal brain cancer at 39. After a 14 month struggle, he passed away on Monday. I can only tell you that it is important to love each other, make every second count and communicate all your wishes. Sadly, my husband lost the ability to speak the last month of his life and I would do anything to hear his voice one more time.

If you ever need to talk, scream, whatever, I am here. I know that cancer can affect the caregiver as much as the patient. I have learned so much this past 14 months and it is a difficult journey. Just keep the faith and stay focused on your husband's health and needs.

My thoughts are with you at this difficult time.

Lisa

 

[DutchsMommy]

Hi again Amanda,

Hope the raiki went well. I (personally) think it a good decision to include your daughter. I think in retrospect I would rather have known and then could make my own decisions about how to be involved and not felt akward around my mom - never knowing what to say etc. On the counsellor side, again for me it would have been weird talking to a stranger.....I would have much rather talked to my parents about my feelings etc. Anyway, just me 2 cents as always....wishing you a good week.

 

[amandamc8]

Well, here we are, now 5 weeks since we had our devastating news, and we're all still here - which makes it a great week in my book! Miles had a couple of pretty bad days last week, it's a very scary time for us all...

I'm doing my best to keep it together but it's hard sometimes, trying my best to just focus on the here and now, but I can't always keep the dark thoughts about the future at bay. I keep coming back to the prognosis of 'weeks not months' that we were given five weeks ago now. I know that I shouldn't think about it, and that they are often proved to be inaccurate, but it's not an easy thing to shake off.

We still don't have our appointment from Christies - there has been a postal strike in the UK and our referal hadn't arrived. So our GP faxed a copy of the letter and we are now in the system and should hear from them by the end of the week.

Miles tried Reiki and reflexology last week, and felt the both of them had helped him a bit - nothing major - but even if it just gives him a sense of wellbeing I think it's worth it. I am trying to find someone who will come to the house to do accupuncture (we haven't been able to leave the house for weeks now) but no luck yet. The Macmillan website reports that many people have a good response to it when it's used to help breathlessness, so will keep trying...

I seem to be angry alot just at the moment... not with the medical service, or with the diagnosis even, but with other people in my life. My in-laws keep asking Miles questions about what he is eating, and has he put weight on, (they won't give him chemo because he is so weak) and why aren't we chasing private treatment... Apart from the fact that Miles feels a tremendous pressure to eat, which is the last thing he needs, answering wears him out - he finds it difficult to talk because of his breathlessness. I have explained this too them but they just don't let up!

And then there's my mum, who is 66 in a few weeks and still working full time - even though she doesn't have to at all - and my dad is desperate for her to retire so they can spend some time together. I would do anything to have just one more 'quality' day with Miles, just to be able to go walk around the park or anything, and yet she choses to give up 5 of those quality days every week. I know it's her choice to make, it just makes me so angry...

Sorry - bit of a negative rant today. It has to come out somewhere though. Thanks to you all for your continued support... it's such a relief to have somewhere to 'talk'...

Amanda x

 

[teskak]

I am so very sorry to say you have come to the right thread. When a loved one has a serious illness there seems to be no end of people who just want to drain your energy with this need to "know", "comment" or just downright interfere. Whatever your relationship with your in-laws, just gets magnified due to the stress.

You are spending all of your energy supporting your loved one, and they just come up with mindless rubbish. What I did when my mother was dying & I could not deal with the rubbish from her friends over who was told what, when and who gets to visit etc - I appointed the most 'together' of her & Dad's friends as the contact person - if anybody wanted to know anything they could go to that person. AND NOT STRESS ME OR DAD.

Also, if you have a friend who you can yell, scream, cry at - preferably somebody who has walked a cancer journey to, then you need them, if only to draw from thier energy to get you through your journey.

The Dis is also good for that as well

 

[safetymom]

Try not to pay attention to the questions. You know what is important to the both of you. Sending hugs and prayers to both of you.

 

[DutchsMommy]

Feel free to vent HECK EVEN USE CAPS IF YOU FEEL LIKE IT!!!!

 

[safetymom]

Try not to pay attention to the questions. You know what is important to the both of you. Sending hugs and prayers to both of you.

 

[dogodisney]

Feel free to vent HECK EVEN USE CAPS IF YOU FEEL LIKE IT!!!!

Come here and let it all out. You can yell and scream all you want.

 

[smfritz03]

My heart just breaks hearing your story. We were faced with this news back in April, but sadly she lost the battle in June after being told she had about 2 yrs, sadly it was 2 mths. We were hit w/ confusion--anger--everything under the sun that you can imagine. And still to do this day --every day.

All I can tell you is---grasp every single day to the fullest. Talk, laugh--take a TON of pictures while he's awake, laughing, sleeping, etc--record his voice, his laugh, hold each other and don't hold anything back--talk about it! Don't put anything off for tomorrow.

I'll be praying for your dh and your family, if you need anyone to talk to, vent at--don't hestitate to hop on here and use us as your sounding board. Words alone can not express what I want to tell you, but I'll be here supporting you and praying for you guys!

 

[PrincessKsMom]

OP, I know you are hurt, angry, frustrated, sad, etc. and are learning to deal with your emotions and this diagnosis as you go. I know your in-laws are making matters worse for you, but they're fighting this battle with you. It's their son. I'm sure they're still at the stage where acceptance of the diagnosis has yet to sink in. They probably truly believe that if your husband just eats enough, or sees the right people, or tries some new thing, that it will make this all go away. It must be hard as a parent (and also as a spouse) to feel as if you can't proactively do something to change your circumstances. I'm not in any way trying to negate your feelings; you're entitled to them. Rather, I'm just trying to offer an alternative view -- that of a parent whose son has been diagnosed with pancreatic cancer. I don't honestly believe they are insinuating that you aren't doing all you can for their son (or he for himself), I think they're just grasping at any straws they can. You're all on the same journey, just some of you will cross the finish line ahead of others.

I honestly, truly hope I have not offended you or added to your anger and unhappiness. I pray for you and your family daily and will continue to do so.

Forgot the point of all of this: I know you're here to vent, which is a great thing, and I also know that you are reaching out for support, which you will find. I didn't in any way mean to insinuate that you have been anything other than understanding or loving toward your husband's family. I just thought I'd plant the little seed of another perspective.

 

[CarolynU]

Still just thinking of you all. Don't know what else to say really. Can't comfort you, but am there for you. Lost my own DH to bowel cancer so feel free to pm me at anytime at all if it would help in any way.

 

[Torontogal]

First of all I want to offer my support. Your thread caught my eye and I had to respond.
I lost my father just last year to Stage 4 Pancreatic Cancer. His doctor thought he had an ulcer. He was admitted to the hospital soon after and told it had already spread to his lungs. He passed away 1 month later. I am still in shock.
I will be praying for you. Please take comfort in the fact that many people on here are praying for you. Be strong and hang in there. Hugs to you.

 

[amandamc8]

Hi again everyone. Just wanted to add a little background info here...

I know your in-laws are making matters worse for you, but they're fighting this battle with you. It's their son. I'm sure they're still at the stage where acceptance of the diagnosis has yet to sink in. They probably truly believe that if your husband just eats enough, or sees the right people, or tries some new thing, that it will make this all go away.

Yes, of course I know this... but I am not emotionally capable of being objective about things at the moment! I think that it is probably hard for me because for years now we have had very little to do with Miles' family (no big fall out or anything, they just aren't close) and now I feel like I have to justify everything we do. It's so hard... and Miles gets so frustrated about it and I feel like I am letting him down by not being able to get them to understand.

I don't honestly believe they are insinuating that you aren't doing all you can for their son (or he for himself), I think they're just grasping at any straws they can.

Actually, they have insinuated just that - my MIL has even gone as far as saying such things as 'well the rest of the family is OK so it can't be something he picked up from his childhood', 'maybe if you spent more time making food from scratch', 'it's probably something to do with all your exotic foreign holidays' and 'maybe if you hadn't spent so much money going off on holiday you'd be able to afford private treatment'. Yet I managed to keep my temper through all of that...

And this is why I come to visit you all on this thread to vent! Thank you all for giving me someplace safe to go to...