Reality

My mother was diagnosed with stage IV pancreatic cancer on Dec 1. She has been absolutley amazing through this stuggle and still isn't done fighting. She has done many "alternative" treatments to try to overcome. However, I think we may have reached a point of no return. I know everybody is different and there is no way to predict the future, but I am trying to get an idea of what to prepare for at this point. If it is not too painful for people, I would appreicate some advice/guidance/reality from people who have gone through this with someone they love. Thank you for your time.

Hi Regan,
My name is Tina and I am 28 years old and come from Dublin, Ireland.
My amazing mother aged 57 was diagnosed with stage IV PC at the end of July 2005. She also had mets to her liver and lymph nodes. My mam fought this thing every step of the way with a smile on her face and amazing strength and courage. Yet every step of the way she came up against a brick wall. They tried chemo (gemcitabine)but this only made her weaker. She was taken into hospital on the 5th sept 2005 and they tried their best to make her as comfortable as they could. I did not realise then that they would be the last days I would spend with my mother. Heartbreakingly she passed away peacefully on the 15th sept after putting up such a brave fight.It was such a huge shock as she seemed to be doing fine and was able to be sitting up in the bed chatting to us normally, the only thing that was different was that she had a morphine drip. My mam was and still is the best mother I could ever of wished for and my best friend in the world and I miss her more than words can say. I am so glad that I was able to spend those last days with my mam laughing and talking about all the good times we shared but sadly we never got to say goodbye.Although I kknow in my heart my mam would not have wanted to have to say goodbye and neither would I.

The only advice I can give you is this... Make the most of every moment you have with your mother as stage IV PC is in most cases fatal. Just try to cocentrate on making her as comfortable as possible and filling her days with as much hope and happiness as you can.You have to focus on your mother and whats best for her as nobody wants someone they love to have to suffer.

It is 6 and a half months since my beautiful mother passed away and I am still struggling to carry on as best as I can. I know she would not want me to stop living so I try to go on in her honour and to make her proud, although it is very hard.

Just know Regan that you are not alone through this. There are so many people who have gone through and are going through the same horrible situation as you are so never feel alone. I am on this board almost every day and it gives me strength so if you ever have any questions or need to just vent I am here to listen.

I hope your mother continues to stay strong and positive throughout her journey, I will hold you all in my prayers.

Stay strong!

Tina

Tina, thank you so much for taking the time to respond to me! I am so sorry about your mom. Do you have any siblings or family that you can take solace with?
Hearing that I am not alone does help. Of course, intellectually you know that, but emotionally I feel very isolated. I can't imagine what my mother is going through. I try to look at it through her eyes (as much as that is possible) and I try to support her in anything she wants to do. My concern for the last bit is she is not taking her pain meds anymore and doesn't seem like she is going to do a nerve block either. She is trying to fight, which I admire greatly. She is following the advice of a doctor that works with energy, vibes, that kind of thing... I must say that I always thought I was a little out there as far as believing in non-traditional remedies, but this is too much even for me. I would have no problem with any of it, except that the thought of my mother being in pain is devasting. I tell myself that if it gets too much, she will do something about it, but it still feels wrong to me. However, it's not my battle. She is still rather hopeful that she can turn this around. I don't mean to give up hope, but it is just getting harder and harder to keep the faith. I feel horribly guilty for my doubts... but at the same time, I wish she would start doing the things she talks about wanting to do before that oppurtunity is gone. I have 2 younger sisters (20 and 18) who seem to have more faith in the fight than I do. Is it it denial, is it faith? I don't know. I know it is starting a divide between us and that is breaking my heart even more. The only time I have tried to discuss any of my doubts with them was this week, and only because my mom is basing some very big decisions on their emotions right now. It went very poorly, so I am leaving it alone. I spoke with a good friend of my mother's, who is also a Hospice doctor and seen all of her medical info. She thinks my mom should start doing anything she needs to do right away. I don't want time to pass her by, but I don't want to steal her hope. She should be able to have hope. I am so sad, so angry that this is happening. I feel so helpless and all I want to do is help in any way she needs. Everything I read is horrible... I keep looking for answers where there just aren't any... I am trying to stay strong, but sometimes it's just so hard... but not even a fraction as hard as it must be for my mom...
Sorry, I know this has been a really long post... I am rambling at this point... Thank you again for taking the time to respond. I hope that you are doing ok. Please know anytime you need to vent, I am happy to listen. May you find peace in your heart, somehow.

Hi Regan,
I am so sorry your family is going through this horrible time, my heart is breaking for you all. But please find strength in knowing that you are helpinh in any way you can and trying your best to respect your mothers wishes as regards treatment. Has her doctor actually sat down and discussed a time frame with her yet?
As regards your two sisters it sounds to me like they are in denial. My experience of being the only daughter and the youngest with my mother being not only an amazing mother but also my best friend, I know that during the time of her ilness it was almost like I was on autopilot.Mam was staying positive and strong in front of us and I was trying to do the same for her. To be honest although I read alot of bad things about PC I never actually let it sink in, I always thought my mam would be the lucky one who would prove all the research wrong, you know? That is why when my mother did pass away it was a total shock for me although I know I could have never realistically prepared for it. I would suggest that maybe you and your 2 sisters request a meeting with your moms doctor. If you think that this will only cause a bigger rift between you then maybe you speak to the doc by yourself if you feel this would help.

From my experience I know for a fact that it helped my mam imensley that we never mentioned death and always spoke about hope. My mam was not one for wanting to plan her own funeral arrangements etc.... and we told eachother every day of our lives how much we love and value eachother so she would not have wanted upsetting goodbyes. She did not have any unfinished business that she needed to sort out. I am very lucky to also have a very loving and supporting family with me. I have my dad and my two older brothers, my boyfriend,my grandmother (mams mother) and my sister in law and nephew.

I am worried your mom is putting up with pain needlessly also. Is she at home or in hospital at this stage? Unfortunatley you cannot force a person to do something they do not want to do. I think if the pain gets bad enough she will change her mind as I dont think any human being would be willing to put up with the pain PC can cause. Has your mom expressed a concern that the end is coming or is she oblivious to the fact? Does she want to be involved in planning arrangements for after she is gone?

I know for some people it helps them to do these things and if she is that sort of person then she should do it sooner rather than later. PC happens so suddenly that sometimes you do not have time to even sit down and discuss things with your ill family member, this can leave the other family member confused and feeling alone as they are afraid to ask questions for fear of upsetting the ill person.
I feel this is the case for you and your sisters.
That is why is may beniefit you to have a word with your moms doctor and find out what sort of time frame you are dealing with here.

Is your mom having paliative chemo?

Sorry about all the questions, but I am hoping that maybe I can help you in some way.

Please know that I am here to listen if you need or if you have any other questions I am more than willing to try my best to answer.

Please try to stay strong.
My prayers are with you and your family.

Take care.

Tina

Thank you again for taking this time with me. Your understanding and caring is very comforting. I am glad to hear that you have so many people surrounding you with love as you try to heal yourself. I am blessed with an amazing husband, great friends, and a large family. However, the family is so immersed in their own pain and dealing with this, it is hard to lean on each other as much as we may need too. So again, you taking this time with me is so appreciated!
As far as my sisters go, they are definetly in MAJOR denial. but they want to be... they won't read anything and they don't want to hear anything negative about this. My mom seems to be fostering that mentality, so I have just let everyone know I am there if they want to talk or whatever, but I am dropping the discussion. When they are ready, they will come. I am just worried that they are going to miss an opportunity to say/do things that they want before it's too late.
I am always positive around my mom. I just try to follow her lead, but sometimes it's hard because she doesn't seem to be sure herself. But how could she be?? My mom was a Hospice nurse for years, which is a blessing and a curse. She is very aware of the specifcs of this disease, but is trying to protect the people who love her. Personally, I wish we could just be open and honest and support each other. But it's not my decision, it's my mother's and I will do whatever she wants. It is a lesson in patience for me. I am a very take action kind of person, but there really is no action to take right now...
The first month after she found out, my mom discussed funerals and wishes, but it seems the closer we come to those things, those are taboo subjects. Now we talk about hope and trips that I don't think are ever going to happen. But I talk about them with hope and a smile. Then I go home a cry forever in my husband's arms and try to come to terms with the denial/reality equation. Then I try to put on my mom hat, as I have 2 children (7 and 9).
I am concerned about a recent development in my emotional state... here's an example. my mom was in New York city with one of my aunt's this weekend at a spiritual conference. I was going to my other aunt's house for a birthday party. I called my aunt to say I was going to be late and her voice was horrible (due to a cold it turned out). I became absolutley convinced that my mother was dead and they were waiting for me to get to the house before they told me. Turns out I am crazy and that wasn't the case. I am hoping that that was a phase and I am not going to stay like that, but I don't know...
Today my mom is home with a horrible cold on top of everything else... My aunt that was with her this weekend said that she was in a lot of pain, but thank God is now taking her pain meds and is scheduling a nerve block. Again, Thank God for that! I couldn't bear the thought of her in anymore pain than she absolutley has to deal with. By looking at my mom's face, she knows what's coming. I think she knows, but is trying to spare us. That seems to be comforting my sisters, but I wish she would be honest with me so I can help her with anything she wants to get done. That has always been the nature of our relationship, and though I appreciate her desire to protect me, starting after 30 years is just confusing me! but again, I just follow her lead on this... I fear the end is far closer than any of us think, but then again I was a basketcase yesterday and thought she was already gone, so what do I know?
On top of that, my mom seems hell bent on me starting my own life up here... let me explain that... my family and i moved from columbus, ohio to buffalo 12/20 (we found out she was sick 12/1), we have only done so to take care of my mother and plan on going back to ohio after my mom is gone. we rented a farmhouse (which has been a huge blessing) and my husband found a job. now i am going to get a job to make ends meet and to make my mother happy, but all i came up here to do is take care of my mother! UGH! these are very confusing times. i am feeling stronger today than when i last wrote, but i don't know how long taht is going to last... i do have faith, but sometimes it's hard to remember that. i try to focus on the flowers coming up all around my house and the birds in the trees, etc... but it's getting harder and harder to do that.
Thank you so much for listening. It really is helpful to get these things out my head. I hope you are doing well with your struggle. Please know if you need to vent I am happy to listen.
~Regan

Hi Regan,
How are you and your mom today? I hope today is a "good" day for your mom and that her cold is clearing up. When my mother was going through her fight with PC I remember on the really "good" days when she was free of pain and in really great spirits the whole family was in a great mood, you would think we had won the lotto or something!! That is the way this journey is..... full of ups and downs and corners and routes that you have never had to take before.
Please dont feel like you are losing your mind, just take every day as it comes and dont feel like a freak if you are feeling paranoid or really stressed, you are only human at the end of the day. I feel for you as you are the oldest sibling in your family and im sure you feel an imense amount of pressure to be everyones "rock" but please do try to look after yourself also.
It is a blessing that you have your 2 children to think of, so you have to carry on with some sort of normality for them, this will be a great help to you in the future also. My oldest brother (35) also felt he had to be the strong one but he also had his little boy (3) to look after which is also a blessing. He is a handful (as they are at that age) so he keeps them very busy. Children also have such a beautiful inocent way of looking at everything.My brothers little boy Aaron misses his nana chris like crazy but he also says that when he closes his eyes he can see her smiling at him, and I have no doubt that she is with us all the time. He really does keep us smiling through these dark times and I dont know what we would do without him.
My mams illness took her from us very very quickly...diagnosis to death was only 2 months, so needless to say it still hasnt sunk in and probably wont for a long time to come. I am just trying to carry on as best as I can and try to make my mam proud every single day, as I know she would hate to see us stop living our lives. This is the main thing that keeps me going.
It has been less than 7 months since my mam passed away yet it still feels like it was yesterday. I talk to her EVERY night before I go to bed and I dont think I will ever stop talking to her.We had an extremely close special bond and nothing can take that from us not even death.
I have also had alot of beautiful dreams about my mam and I know it was her way of letting me know she is ok....they really comfort me.
I regret so much that myself and my boyfriend (whom she called her 3rd son) didnt get married sooner and start a family, I dont know if I will ever be able for those things now because my wonderful mam is not here to help me pick out my dress or pass on her wisdom of raising very happy children to me...this makes me so sad. I knwo deep down my mam will be with me throughout the rest of my life yet it makes it very difficult to register as she is not here physically any more.

Getting back to you Regan........ I hope that you will find comfort in your husband and children and know that whatever happens your mom will be with you ALWAYS!

I am so glad to hear that your mom has decided to go back on her pain meds and schedule a nerve block, I hope this helps to ease things for her alot. Is your mom sleeping alot?
My mam was sleeping alot towards the end and on a few occasions she said "I love being asleep as I dont have any symptoms then". I always try to think of her being in a really deep long sleep now were she is having sweet dreams and is free of pain.

You are right to have a plan in your head for after your mom is gone as this will give you something to focus on. As regards your mom wanting you to set up home in Buffalo, she probably just wants to see you settled somewere and near your family before she goes. She also probably wants you to get back to some sort of normality, working etc... I know in my case my mam wanted us to stay in work and keep things as "normal" as possible for her. Although I did take alot of time off and I was in the hospital with her everyday, the morning and early afternoon is when she caught up on sleep and spent time with my father.We would arrive in the afternoon and stay until late at night. Even during her illness my mam always had a smile on her face and all the nursing staff loved her. So much so they were all crying when she passed.

Unfortunatley we did not get to be with my mam when she passed. we had left the hospital at around 11pm on wed night (said goodnight, sweetdreams and I love you so much) then went home. My dad stayed over with her that night and he called at 12.15 midnight to say she was gone. If I had of known it was the last time I would see my mam alive I would have stayed the night with her and said more things. Although I know deep down in my heart we had told eachother every day of our lives how much we love eachother, and I know she did not want us to see her go so she waited for us to leave the hospital. She also spoke of my cousin Susanne who passed away aged 22 in may 2001 that day and said that she had been talking to her. I know that Susanne came to get my mam and that they are together now and that gives me some comfort.

Regan Please know that you are not and never will be alone in this world. Try to focus on the good things in your life and help your mom to leave knowing that your are well looked after.
I know in my case being the "baby" of the family my mam always said "you will always be my baby no matter how old you are". But I know she left knowing that Simon (my boyfriend) would look after me always on her behalf.

Please let me know how things are accross the water and always know that I am here no matter when you need to get things off your mind.
You, your mom and you family are always in my thoughts and prayers.

Be Strong!

Tina x

My mom is in a lot of pain today, the nerve block hasn't kicked it yet, but she did take her meds... We are hoping the pain will get better in the next day or so. The doctors said it can take up to 3 days to take hold?? Her appetite is very poor and she can not find a comfortable position, but she is hanging in there. We got to have a nice talk today... It wasn't too overwhelming, but I told her that I want her to know that I have not lost faith and I love her. I feel we have a good understanding of each other, and that is very satisfying to my soul... She is looking at this as a bad couple of days, and hopefully that is all it is. She is tired today, but that may just be a side effect from the pain killers... maybe not.. I am really trying to take it minute by minute and stop trying to predict what is going to happen. Why is that so hard to do?
I think my mom does want me to go back to a "normal" life. she knows I worry and she wants me distracted. I am very blessed to have my husband and children. Those poor kids... I have been so witchy! I try not to be... I guess all parents have witchy times. I feel very lucky to have my family though. that is part of the worry I have for my sisters. They don't know where they fit without my mom, whereas I am a mom. I have a vague idea of where my life is headed, well as much as one can really. They are lost, especially Kate... It's heartbreaking to watch. I try to get them to lean on us, but they don't want to do that right now and that's ok with me. I just wish I could help them find their way... but then again, that is something we all do for ourselves I guess.
I think about you and how you only had 2 months to process all of these kind of thoughts and feelings. I know it really bothers my youngest sister that my mom won't be there for her wedding, kids, future... Thankfully we do believe in angels and though it isn't quite the same, I know she will be at all of those things. I have faith your mom will be with you too. though it is not teh same as them being there, for my wedding i incorporated little things that were from my great grandmother and my grandfather (we were very close and he had passed away that same year). i had dogwood flowers on my cake because my gram loved her dogwood tree and we played mac the knife by louis armstrong as our recessional for my grandfather. it just made me feel that they were closer. maybe you could do some things like that to keep your mom involved in the day?
if you don't mind me asking was your mom in the hosptial because there was a crisis, or was to control pain or some other reason? i am asknig because i know my mom does not want to spend much time in the hospital if that can be avoided. she says that if she knows she is at the end, she wants to go to a Hospice living center. I wish she would stay home, but she says that would be too much for us.
I so enjoy talking to you! Tell me something about where you live... how is the weather? I know that sounds trivial, but it's spring here and the flowers are just coming up, it's so beautiful! It helps to remind me the there is more than death and pain and despair...
I hope to talk to you soon!
~Regan

Hi Regan,
I am so sorry your mom had a bad day yesterday, I hope today is a "good" day. Yes the nerve block can take 2 to 3 days to kick in so dont despair, im sure it will work its magic soon.

I am so glad you had a nice talk with your mom, that is definatley good for the soul, and im sure she feels mores relaxed also. As you said just take it day by day and try not to look too far into the future as it will drive you mad. Nobody knows what tomorrow holds for them so try to live each day as best as you can....... Easier said than done I know, but I pray you stay strong.

I know what you mean about your sisters, they do not have their own family like you but I am positive they will find their way given time.

My mam was diagnosed after getting severe jaundice in early July 2005, the doc originally thought it was gall stones (oh how I wish it was) but upon further investigation found it to be PC tumour. They fitted a stent to releive the symptoms fo the jaundice which helped greatly. My mam was allowed home from hosp approx 30th July and began her first cycle of chemo on the 11th Aug, all seemed very positive. My mam always insisted on everyone staying upbeat and not depressed as this made her in turn feel stronger.I went with her for her 3rd dose of chemo on the 25th Aug and they could not give it to her as her white blood cells were too low, this was very dissapointing for me but my mam as usual was very strong and said "Sure its only one day, we will have the bloods right for the next time", such an amazing woman!!
Then on the 5th of Sept 05 we threw her a little birthday party for her 57th bday and had a lovely day. In the afternoon we chatted on the couch and fell asleep cuddled up next to eachother holding hands, a memory I will always treasure. I noticed that day that her eyes were yellow again and she said that she just wasnt feeling right, so we took her back to hosp the next day, she felt safer there. They checked her out and found that the tumour had pushed the stent out of the bile duct which was causing jaundice again, they tried to fix this but they explained to my father and oldest brother that the cancer was too aggressive. We were distraught. I STILL refused to beleive that that was it so I continued to be my usual upbeat self for my mams sake. At this stage her stomach was filled with fluid and she found it hard to breath, so they had to fit a drain, this helped ALOT, and my mam tried her best to eat little and often. Mostly cuppa soups with bread in and ice pops (orange flavour was her fave). By monday the 12th sept she was in pain so they fitted morphine pumps which helped her imensley.
She was still able to sit up in bed and chat to us at this stage. Then on tues the 13th I walked into her room to find her asleep with oxygen lines up her nose, this gave me an awful fright. And for the first time my mam looked like a very very ill woman, I was very very afraid. It is that day that my dad told me there was nothing else they could do for my mam. We were all heartbroken but again had to be strong for my mams sake. She woke from sleep on and off all day that day and the next, whenever the nurses came in she would always wake and chat to them and have them laughing with her sense of humour. She is my hero. She passed away that night at 12.15 midnight going into thurs the 15th sept. I will never forget that night or the phone call for us kids to get to the hospital fast...I just kept saying "Im not ready its too soon", and deep down in my heart I knew she was already gone. My world as I knew it changed forever, but I always remember my mam telling me when I was little and so afraid of losing my mam of dad, "dont be afraid for the person who has passed away, they have gone to a beautiful place and are in no more pain, its the people who are left behind that you need to focus on". This gives me strength to know that my mam had amazing beliefs and I do also, because I know we will be together again one day. When she was seeing me off to school when I was yonger she would say "seeya later alligator" and I would reply "In awhile crocodile". That is how I look at it now, it is not goodbye it is only seeya later alligator!!

It is great that your mom has made a decision to go to hospice near the end,they will take real good care of her. The cancer hospitals here are wonderful and my mam was in her own private room so they made her very comfortable and looked after her so well.

I will tell you a little about my life here.
I grew up in a place called Baldoyle in Dublin. It is a leafy suburb by the sea (near Howth on a map). It is a wonderful place to grow up. Myself and my boyfriend bought a house 2 years ago in a place called Laytown, County Meath, it is also by the sea but one county over from Dublin. This is also a beautiful place. We are looking into selling our house this year and building a house on the land next to my parents house so we can be close to my dad. This is giving us both something to plan for and look forward to.
The weather here at the moment is extremely sunny blue skies but also very cold. The birds are singing and the mornings are brighter and cherry blossom trees are in bloom along with snow drops and bluebells...beautiful!
I work for Europcar in Dublin and I usually go for a walk along the canal on my lunch hour to clear my head.
Ireland really is a truly beautiful place to live.
I have only been to The U.S.A afew times, have been to New York 3 times and Florida once and Vegas once. Would love to hear all about were you lived before and were you are living now....
Nice to talk about something else every once in a while. :)Keeps ya sane.

I am running in the womens mini marathon on the 5th of June this year and I am doing it for Pancreatic cancer research in memory of my brave and beautiful mam. This is also giving me something to work towards.

Well I think thats enough rambling from me for one day...... God once I get started...Im on a roll..lol

I think about your mom and you and you family all the time and say an extra prayer that you will all stay strong.
I hope today is a good day for all of you, esp your mom.

Take care & stay strong.

Tina x

I am sure your ability to stay positive gave your mom much peace. You should be very proud of yourself! I have faith you will see her again, as I know that even when my mom is gone, I will see her. There is so much the universe has to offer, if you just look for it. Now sometimes that is harder than others... Here's an example... I believe the universe will send you angels when you really need them, and you have been one for me. Thank you so much for that.
OK, as far as me taking comfort in flowers... I woke up to everything covered in snow! But that is Buffalo for you! You may know this already, but Buffalo is where Niagara Falls is located. If you are ever over here, please tell me!!! I'll show you around and cook a huge dinner. Now Columbus is about a 5 hour drive from Buffalo. Winters are far more mild, summers are ridiculously humid. However the general temperment of Ohio is more laid back than the Buffalo area. Buffalo is not quite as "in your face" as NYC, but some of the attitude has carried over for sure!
You mentioned doing a marathon! That is wonderful!! I walked the San Francisco Women's Marathon for Leukemia and Lymphoma in October, it was an amazing experience! Thought I was going to die by the end, but amazing!!! I am very glad you are doing that. I think it will really help you heal. I talk about walking one for PC after things have calmed down.
I have always wanted to go to Ireland!!! It's on my to do list. I haven't had the chance to travel outside of the States much, except Canada... I really want to though. We talk about it all the time. I make my husband and kids list the top 5 places in the world they want to go to. I want my kids to really understand that the US is but one place in the world and not the center of it! That is not quite what they teach in the schools these days. but I digress... that is another topic entirely.
Well I am off to my mom's with my fingers crossed that she has some relief today! I hope you have happiness in your heart today!

Hi there,

I am so glad that I have been of some help to you!! You have also been so much help to me too and it helps me to know that I can pass on some of my experiences to you.It is great to chat to someone who knows exactly how I feel and understands what I have been through! We are helping eachother, which is great! A real blessing as sometimes it is easier to talk to a stranger than to a family member. Although I dont feel like we are strangers anymore.. :)

I beleive Buffalo is a beautiful place I have seen some tv shows on it before and it looks fabulous. Also my brother went to university in Ohio around 16 year ago, I cant remember the name of the school he went to but will find out. He went there on a soccer scholarship and he loved his time there. Another beautiful place.
I will certainly let you know if I am ever over your part of the world, would be wonderful to meet up and have my own personal tour guide. :)
If you are ever over in the emerald Isle be sure to let me know and I will sort you out with a cheap rental car and be your families tour guide.... :)

I so hope your mom is having some relief today and she is in good spirits.
Please let me know how she is.

I cant beleive there is snow over there, that is wonderful. We very rarely get snow here our winters are never really cold enough, suppose not such a bad complaint. I am looking out of the office window as I write and it is a beautiful sunny day, not a cloud in the sky!

Take care & I hope to hear from you soon.I will say a prayer that today is a good day for your mom.

Tina x