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Old 09-15-2009, 08:35 AM   #16
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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...
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Old 09-15-2009, 11:14 AM   #17
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Quote:
Originally Posted by amandamc8 View Post
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...
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.
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Old 09-15-2009, 11:43 AM   #18
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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.
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Old 09-15-2009, 12:41 PM   #19
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Praying for all of you! Hold tight to each other & take one day at a time.
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Old 09-15-2009, 01:38 PM   #20
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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 to you.
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Old 09-15-2009, 05:34 PM   #21
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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.
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Old 09-15-2009, 05:53 PM   #22
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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
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Old 09-15-2009, 06:38 PM   #23
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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.
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Old 09-17-2009, 02:28 PM   #24
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Still battling on...

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.

Quote:
Originally Posted by DutchsMommy View Post
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...

Quote:
Originally Posted by Mackey Mouse View Post
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...

Quote:
Originally Posted by CarolAnnC View Post
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
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Old 09-17-2009, 02:34 PM   #25
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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.
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Old 09-17-2009, 03:10 PM   #26
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I'm so sorry your family is facing this beast.
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Old 09-17-2009, 06:10 PM   #27
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You and your family will be in my thoughts and prayers. Cancer is such a horrible thing.
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Old 09-19-2009, 12:18 AM   #28
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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
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Old 09-21-2009, 08:57 AM   #29
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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.
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Old 09-23-2009, 07:36 AM   #30
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Still fighting...

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
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