My Mother

Meg · New User Joined: 18 Sep 2005 Posts: 9

My mother was diagnosed with pancreatic cancer three months ago. The cancer has spread to her liver and, although she was doing chemo (gemcitabene) the cancer continues to grow.
I have a lot of questions that may or may not have answers. How will this disease progress? What symptoms will she have? How will I be able to help her? I live across the country and travel home as often as I can, but how will I know it's time to drop everything and go to her? What will the end look like for her? And for our family?
I'm trying to understand so that I can somehow grasp this situation. I need answers to the questions that my mother will not ask because she does not want to know. I respect her choices, but I need to feel prepared. There may not be any clear answers, but I can learn from your experiences.
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Meg

fmdrivegirl · Posted: Wed Sep 21, 2005 8:15 am Post subject: Me too!! Ditto Meg

You got that out so much more eloquently than I could have managed. I have all the same questions as we have both discovered we are in the same boat.
Like I told you, my biggest fear is that somehow I won't get there - or it will be too late....Those things are always in the back of my mind. From where I am, it's a minimum two day journey home. Besides, I don't want to go home to say goodbye.
Just like you, all I have here is research - as frightening as that is. I still need to know what is coming at me and my family.
On another note, I had a request to go and get some "screenings" done due to ????...Hell, I don't know. Your guess is as good as mine. Thrilled they want to look after me instead of my dad.....Miserable thing to say but its true. I'm more concerned for him right now.
I hope it goes well Meg - I know the feelings you have. Keep in touch and if anybody has anything they could tell us, that would be so helpful at this point.....
Thanks again;
fm drive girl

Anonymous · Guest

Hi Meg and fmdrivegirl

I'm not sure my reply will be of any help or consolation, but I felt compelled to answer.

My Dad's surgeon told my Mom to call all the family members home in July...my Dad would not live probably through the night..relatives came from Texas , VA, CT (to MA) and stayed by his side for ten days. All finally had to return home. We brought Dad home with Hospice Care (They are phenomenal!!) on Aug 4 and they told us he wouldn't last another week.

Well . Dad (stubborn as he was) still hung in there, lapsing in and out of coma.
On Sept 10th the nurse told us it was a matter of hours...again all the relatives were called and arrived. We sat by his bed in their living room constantly (14 of us!) telling him it was OK to stop fighting. Not until 3 days later when by chance, he was alone for 15 seconds, did he finally give up his fight.
I guess my answer is...you just don't know. DON'T feel guily if you are not there. (I've been told the person prefers to die when he IS alone) But be there when and if you can..even when in a coma , they are aware of their surroundings and can hear you.
We are very sad that a fantastic man is gone, but have peace knowing that he KNEW we loved him and is now in a better place.
It's OK to go and say good-bye..
My heart breaks for both of you

Meg · New User Joined: 18 Sep 2005 Posts: 9

What kind of "screenings" did they want you do do? No one said anything to me about that, but of course I can't help but wonder about my future. My maternal grandmother died at 47 from ovarian cancer, which I know they can screen you for, and that it can be hereditary, but I don't know anything about whether pancreatic cancer could be.
What I am beginning to realize is that people in my family do not live to ripe old ages. Makes you rethink the way you plan things. My mother worked very hard to retire comfortably and now she'll never get to. It's hard to know how to balance living responsibly for the future and living for the moment.
Do you have family where your parents are who can fill you in on what's going on? I often find I talk to my mom and get one report about a doctor's visit or whatever, and then I call my sister and get quite a different account. It's in my mom's nature to play down her suffering.
I'm going home in two weeks and I can't even express how anxious I am to get home. And worried that the reality of the progression of the illness will hit me.
Have you had the biopsy results for your dad yet? Have you heard anything new?
Look forward to hearing from you!
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Meg

Diane Summers · New User Joined: 26 Jul 2005 Posts: 9

Hi Meg,

I know what you are going through. My mum had been ill for months before she was diag. in June 05. We were told that this is a very aggressive cancer and that she may only have a few months to live, but everyone is different. Unfortunately with this cancer it usually cant be found until it has spread to other organs in the body and normally by then its too late. The main thing that you must do is ensure that her pain management is undercontrol. I watched my Mum for months suffering with pain usually after she ate anything. Now the medication she takes each day tries to keep it at bay. I have never know so many pain killing drugs but believe me it will make a big difference in her quality of life. My Mum is 57, how old is your Mum? She got put on the experimental drug M200 and also a mild chemo. After 8 weeks of treatment the scan revealed the tumour has not increased so it is working at the moment. But of course it all can change. We were told towards the end that she would sleep more as the cancer grows. Her general health has went down slightly as she takes other medication. She has lost about 4 stone in weight but the med. have managed to keep her weight at a certain level now. Has your mum lost any weight?

I am at my Mums every day and night. When I found out what was wrong with her my whole family and I were devastated. Its such a horrible illness and you feel so helpless at times. I have had to handle this and accept the situation but I do get down sometimes. I try not to get upset infront of my mum as she already is torn apart inside with it all. She does depend on me. I have a full time job and trying to "do" everthing can be exhausting. When my mum deteriates more, we will get some help in. My Dad is being great. He is so attentive towards her and does everything he can but I know he is upset inside.

Make sure that the district nurse comes up to see her. She will keep an eye on her general health and help as and when required. Also MacMillan cancer nurses are there to help. If you dont have one, phone them up and they will arrange for someone to come out and see your mum and your family.

Please ask me anything you want to know as I will be happy to help you. Its tough but your mums is important so you need to be strong.

Diane

Meg · New User Joined: 18 Sep 2005 Posts: 9

Dianne Summers,
My Mom was also diagnosed in June. She is 58, and my friend's father who died of pancreatic cancer last fall was also 58. It seems to favour young victims. My mom has also lost a lot of weight, and continues to do so. The chemo has given her that awful metallic taste and no food tastes right to her, plus her nausea is getting worse so she can barely eat anything.
I'm also worried about her pain management because she doesn't want to take anything with morphine. Like you said, it would make a big difference in her quality of life, but she's afraid it will make her too "out of it" and not herself. But the one common thread I hear among pancreatic cancer patients is the pain. Plus, she doesn't like to take her anti-nauseants because they make so tired, and she's already so tired from the cancer and the chemo. I can understand her discomfort with the painkillers, and once again, I respect her choices, but I can't bear to think of her in pain.
How is your mom doing now? And how are you doing? Are you on this emotional roller coaster along with the rest of us? It's so weird how I can go about my daily life, doing the things I need to do, then all of a sudden it hits me like it did the first time I heard, and I'm back on the roller coaster.
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Meg

Diane Summers · New User Joined: 26 Jul 2005 Posts: 9

Hi Meg,

It is difficult but you have to get her pain undercontrol. I watched my Mum suffer for months and I will not allow it to happen again. We didnt know what was wrong before but now it is my duty as a daughter to look after her. Normally the pain is severe just after they have taken food or even been sleeping for a few hours also first thing in the morning.

My mum got put on nerve tablets 4 times a day 500mg gabapentin. These have helped her but she does sometimes have a shaky hand. We didnt tell my mum about the morphine tablets. She took a reaction to morphine before so she was scared to take anything like that. The morphine tablets are called oxycontin and oxynorm. The oxycontin are slow release pain killers whereas the oxynorm are fast acting. We still have to give her paracetamol sometimes. Soluable 500mg x 2 which helps the pain for a few hours. If your mum is still having pain, speak to the docs about uping the dosage. My mum started on oxycontin 10mg x 2 a day now she is at 80mg x 2 a day. It has stayed the same dosage for a few months but it took a while before we got it under control. Your mum should still be alert whilst taking the morphine. I think a few times my mum was doped a bit but the docs played about with her medication to get a better level. Now she hears everything and is still very alert mentally. As for the sickness, she has been sick a few times in the last few weeks but again you need to ensure she is taking the sickness tablets.

My mums appetite has went up and down. The last few weeks she is not eating very much but a small amount a few times a day. Its better to put her food in small amounts on a regular basis rather than putting a big dinner down to her, cause she will probably not eat it or pick at it. Is your mums mouth sore inside. One of the side effects of chemo is that she will get sores in her mouth. The docs will be able to give you something for it. My mum got mouth wash and pastiles and also antibiotics.

Have you got a cancer nurse that comes up to see your mum?

Speak soon.
Di

Meg · New User Joined: 18 Sep 2005 Posts: 9

Hi Dianne. It's been a while. How is your mom doing? Any news?
My mother is, unfortunately, not doing so hot. She is now taking her painkillers, but she's eating next to nothing. We've started to notice that she's a little bit "out of it" at times, with moments of confustion. She struggles to find words when she is talking and is incessently tired. The pain management team came to see her today but I have yet to hear what they said. I head home in a few days. Anxious to see my mother but so worried about saying goodbye...
talk soon,
Meg
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Meg

Diane Summers · New User Joined: 26 Jul 2005 Posts: 9

Hi Meg,

My Mum died on Christmas day. It was a very sad time for the family. Even though we knew what was going to happen, it is so hard to deal with.

As previously mentioned on my earlier messages, my mum had an experimental drug m200 and chemo and although it did keep it from growing, it eventually started back up again. My mum got a bone scan and various other ones and it showed that she had blood clots in the lung. That was mid November 05. She made the decision to be at home and did not want anymore scans etc. So the docs gave her a different morphine drug. It was one they used years ago on patients and as my mum was not responding to the oxycontin/norm after being on it so long, it did seem to help for a short time. Eventually her body started breaking down. My father and I took the decision that we would care for her. It was hard sometimes. Very difficult for my Mum as she could see the things starting to go wrong. During her treatment at the beginning/middle she was always constipated due to the morphine drugs but the last few weeks were the total opposite. She loved her baths which helped with the pain but again, she couldnt do that anymore. The illness took it out of her. Her appetite changed and she was so weak.

Part of me feels better as I know she aint suffering anymore but there is a huge big hole in my heart. I was with her when she died. Her goal was to see Christmas and she got it. She was a tough lady and had so much courage and determination throughout. She niver gave up hope, which is what I felt kept her going for so long.

Let me know how things are with you.

Di

fmdrivegirl · Posted: Thu Jan 12, 2006 1:10 pm Post subject: Re: My Mother

Hi Meg;
I wish the things I'm about to share with you were more positive but.... its cancer. Your mom is exactly like my dad. The cancer had spread to his liver. I went home just after they diagnosed him and he was gone in less than 3 weeks. I don't know what stage your mom is at but if this cancer is on the move - you should be too! I'm sorry that I couldn't have more time with my dad - my biggest regret.
The only thing I know is that when the cancer started moving, it went downhill fast. At the hospital, they will keep her sedated and with the pain medication - well, her awareness will depend on how much they give her. My dad was still up and doing things when I arrived home but within a week his liver started to swell. It wasn't jaundice that tipped us off but the huge swelling instead. We took him to the hospital and two weeks to the hour, we lost him.
Meg I urge you to go to your mom now and take what time you have. While this is an exhausting time - trust me!! - there will also be moments you'll be able to hold in your heart forever. Don't wait cause life is too short!
I hope your mom keeps fighting the good fight. My heart aches for you cause I know how big a hole the loss of my dad/best friend leaves in my life. Everyday, I shed at least one tear for him. I don't think this sense of lonliness and loss will ever leave me.... Sad

Sorry, don't mean to be such a downer but don't waste one second of your time or the time with your mom. This disease moves with the speed of lightening and things start happening so fast......
Take care and know that you are not alone - although I'm sure you must feel like it by times. Stay strong.
Fmdrivegirl

Meg · New User Joined: 18 Sep 2005 Posts: 9

Seems like none of us has any good news. My mom died on October 5th, about 20 minutes before I got to her side. She died perhaps at the very moment my plane was landing. Right up until the night before the doctors were saying she could go on at that point for another week, but she did not. I wouldn't change a thing, though, because I would not have wanted her to hang on for one more minute in that state than she had to. My brother and sister were with her and told her it was okay to let go.
Something of a shock though, obviously. You never hear of people dying right before their loved one gets there, you always here of people holding on just long enough. I guess that's just in stories.
There's just no way we could have known it would go so fast. Of course it's a relief for the sake of my mother, but I want her back as she was. She just should not have gotten sick in the first place. It still feels like it was a very big mistake. And it hurts just as much today as it did on October 5th.
The world is just not as nice a place without my mother in it.

So sorry to all of you for your losses. And thankyou for your responses. There's such a comfort in knowing that what I feel is normal and there are other people who have felt the same way.
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Meg

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