My Brother

harley · Regular Joined: 01 Nov 2006 Posts: 11

Hello all. I'm typing through tears here. Glad I found this forum.

In Canada we celebrate Thanksgiving in October, so I saw my family back home on Thanksgiving weekend, October 7 - 9. At the time, all seemed well. However, about mid-October my eldest brother started having stomach troubles, a lot of pain after eating. It got so that he was not eating much at all just to avoid getting the pain. I'm sure this is familiar to many of you.

He was admitted to hospital with what they thought was hepatitis; some kind of liver trouble or blockage. A few days and tests later and they saw he had a growth from the pancreas. Someone at the hospital was well-connected and got him in quickly to Sunnybrook, a world-class cancer facility in Toronto. They booked surgery almost immediately as pancreas is aggressive.

I saw him this past weekend and although his spirits were okay, I had trouble dealing with how he looked. I guess due to the blockage to the liver, he’s jaundiced and has lost weight. They knew a vein was involved in this growth and for the surgery yesterday they were planning a Whipple plus do a vein graft from a piece they were going to take from his leg.

Having never had surgery in his life, he was scared but he is smart; he took care of everything (re: will, etc) and he’s already given up his apartment and moved in with my parents. We thought his chances were good; apparently he’s quite young for this kind of cancer and he’s strong besides this. Also he is in the best possible care. There were a lot of positives.

Surgery was going to be 6 – 8 hrs. He survived it. However it was more aggressive than expected. They didn’t take it all out. It’s gotten to a couple of other places including lymph nodes. If chemo takes, he might have 18 – 24 more months. I can’t believe I’m typing this. He has us, his family, and we have to be strong. He also has his girlfriend, who is wonderful for his spirits.

I live in a different city and can't get there again until the weekend. My poor parents, who are advanced in age, are going through hell. Not supposed to happen like this, is it. He's my Big Brudder, he can handle anything. I told him that before surgery. And he did get through surgery. But we don't know for how much longer.

My heart is breaking.

I wish all of you peace and love as you cope with how cancer has touched your own lives.

freeio · Posted: Thu Nov 02, 2006 12:48 pm Post subject: Heartbreak

Your heartbreak shows through. I am sorry to hear of all of this. Nevertheless do not lose hope in this matter. I was diagnosed two years ago with pancreatic cancer, and after a Whipple procedure, radiation, and lots of chemo, I am still here. LIfe is not simple, but it is still quite possible at this point.

You may correctly assume that it will be a difficult battle. Love him and support him however you can, because a good part of the battle is mental. It is most necessary that the patient be kept in the best possible mental state, because if he should give up hope, then the chances of success diminish considerably.

I wish him and you the best.

Check my cancer blog listed below if you are interested in the odd turns a case can take and still be successful.

Marty
Gutnersville, Alabama USA
_________________
-------------------------------------------------
whipple procedure, Oct. 21, 2004
28 days of radiation
56 days of Chemo using Xeloda
diagnosed as progressive recurrent pancreatic adenocarcinoma (Stage IV) Jun. 20, 2006
was treated with gemcitabine, oxaliplatin, and tarceva, which all failed.
Cancer blog: http://diehlmartin.com/cancer.html

missumom · Experienced user Joined: 05 Jan 2006 Posts: 65

Hi Harley,

First of all, DON'T LOSE HOPE!!! Your brother is in an excellent cancer facility. The doctors are aggressively acting to treat his cancer. Your brother is young and doesn't have any health issues in the past. He survived the whipple which is a very major operation.

It is going to be a tough road ahead for everyone, especially for your brother. It is going to be emotionally, physically and mentally draining. There are going to be many ups and downs, but most important, you can't give up hope. Keep things positive no matter what you hear or read about this cancer because if you let it overcome your mentality, you've let the cancer win before giving it a fair fight. No matter what the outcome will be, I hope that your brother will fight it with all that he has in him. He will need his family and girlfriend with him to build up his strength. Let him know that he is loved so much.

Get in touch with the social worker in the hospital who will advice you about home care. When your brother is released from hospital, he can have a nurse visit him at your parent's home once or twice a day, and you can even ask about a 24 hour nurse home care if you feel that caring for your brother would be too much for your parents to handle. Also, if your brother requires any home care equipment, such as a hospital bed, wheelchair, portable toilet, oxygen and medical supplies, this will all be included in his post hospital care. OHIP covers all of these expenses. Also, check out the Canadian Cancer Society web site. You can also speak with someone regarding any enquiries you may have about your brother's health issues at 1-888-939-3333 or info@cis.cancer.ca.

Try to spend as much time as you can with your brother. Time is the gift of God to you. I wish that God hears and answers all of your prayers.

harley · Regular Joined: 01 Nov 2006 Posts: 11

thank you for your kind and loving responses. what a resource this is to my broken heart and spirit.

i should have been clearer. they gave him an estimate on his months left because they didn't take it all. they didn't complete the whipple. after going in first with a scope, they saw what they were dealing with and got what they could, but it's gotten a vein, an artery, some of his colon and infected some lymph nodes. that's why we were told that IF, IF chemo takes, he prob has a year left with us.

people around me are being very kind at the news but i'm sure they'll fade into the background and i can't bear my parents carrying this burden alone. Thank you, MissUMom, for your very helpful suggestion about home care. i was wondering about this and wondered what the costs or coverage would be like. of course, i will get home as often as i can to help out.

anyway, sorry, but given the info i have (that toxic thing is still in him) it's hard to ignore the doctor and hope for more than she said. i'm going to try so hard to be positive when i'm with him.

however i wonder that after being told what the doctor told us, my brother doesn't believe there is hope either, beyond months.

i'm only glad that we didn't lose him on the operating table. and how many of us really get a chance to know your time is limited, and can stick around to make your peace and say your goodbyes. I lost a close friend last December at 37, she died suddenly alone at home and it was ruled "natural causes." She didn't have the chance my brother has, right? I'm grasping at whatever positive stuff i can scrape together.

thank you; your posts have been helpful and reassuring. he will not go through this alone.

missumom · Experienced user Joined: 05 Jan 2006 Posts: 65

Hi Harley,

How is your brother doing? Is he still in the hospital? Has he started his chemo?

Eventhough they didn't get all of it, they got some of it. That has bought more time for your brother. Because he was in good health prior to the cancer and his young age, chemo might just surprise you. Although there is no cure for this awful disease, there is treatment to extend his life. Even if the doctors gave him time, your brother might just beat the odds, yknow. Keep your hopes high and pray. God might just answer your prayers!

Yknow, sometimes, I think it's all on the will to live. I can't even imagine how it's like to be diagnosed with cancer, but I think once you mentally give up, the body shortly follows.

I will be praying for your 'brudder'....

harley · Regular Joined: 01 Nov 2006 Posts: 11

Hi MissUMom,
thanks so much for asking about my brother. there is some news. i've been spending every weekend back home so my computer time on weeknights has been suffering; i'm sorry for the delay in responding!

he is now out of the hospital - that was, oh, last Monday I think? he had some issues in hospital that they wanted to set right before releasing him. at one point his sutures started bleeding a bit because of the bloat built up behind them, for example. but they finally made sure everything is stitched up and functioning properly in there (partial whipple) and he's home with my parents. his girlfriend is taking extremely good care of him and he also has a nurse coming in... not sure how often yet. he was really developing a short fuse with all the questions while in hospital and i thought i'd wait until this weekend to get more details about how often she comes in and just how many meds he's on.

one thing i was not prepared for was the effect of the meds on him while in hospital. he told me about a couple of things that had happened involving my other brother and when i discussed them with the other brother i learned that these things had not even happened.... it was kinda scary. are these hallucinations? not sure. at any rate, he appeared to be lucid but told me things as if they were facts when they were not. now that he's home i can tell on the phone that he's doped-up, but i have no concept of how much or what it is. his girlfriend just says morphine.

he has a huge gash across his tummy (horizontal, not vertical like a typical whipple apparently) and has lost about 50 lbs since September. i'm told his eyes are yellowish and he is greyish. this worries me and i hope i'm prepared for it this weekend. i spent a weekend with him when he was jaundiced, so i guess this can't be worse.

Right now my other brother is basically doing everything for my sick brother in terms of packing up his apartment and moving things to my parents’ house. When this wasn’t known to be life-threatening, my sick bro planned to give up his apartment anyway since we were talking months of chemo/radiation and he lives on his own. So he now has the bedroom he used to share with my other brother when they were kids. Full circle, eh?

I understand right now he's too weak from surgery, but he's to start chemo in a few weeks. Probably in December. I'll keep you posted. I'm scared for him. I keep wondering if these weeks before chemo/radiation treatments will be precious and the only time he will feel somewhat okay. Can anyone tell me if this is true?

He wants and needs “his” things close to him, so he is comfortable and doesn’t feel like a visitor “using” my parents’ facilities. So some small things have come up from his place and this weekend we will be helping bring some larger items. We’ll also be moving a sofabed from the room he occupies downstairs to the basement and a couple of other things my parents have in there so the room will be completely my brother’s.

His girlfriend means the world to him and i really think she is getting him through this beautifully. she is extremely involved in his care, and he won't let my parents be involved (which is just as well). I know he is proud and won't burden them. His eyes light up when his girlfriend walks into the room. He couldn't be happier and this is just what he needs.

We haven't yet talked about the end of things, although i know he has with my other brother. Maybe we're not ready to face that discussion yet. I guess he knows i'll fall apart. I can't be there as much as I'd like so our time together is spent chatting, holding hands and laughing. I have come to accept that he will go but I don't know where i'll find the strength to get through that. There's three of us siblings; it's supposed to be three 'til the "end". But this end isn't right.

I've been wearing a garnet and diamond ring he gave me at my last birthday. My small connection to him from another city. I usually change my rings around frequently but this one is hanging on for luck.

November is pancreatic cancer awareness month. It's also been the bleakest fall i can remember. My brother hates this weather; i know he'd love to see the sunshine and feel the warmth on his skin. I hope he's around next summer to do that.

Yesterday he got out for some fresh air; his girlfriend opened the sun roof and took him out for a drive. He is frustrated at his weakened state after the surgery and a couple weeks of a liquid diet. Doesn't take much to tucker him out and that bothers him. Nothing will ever be the same for him or for us and it's just so difficult.

Sorry for the purge-y posting. I haven't been on here in a while and there's so much going on in my thoughts and heart.

MissUMom, i was reading about how quickly you lost your mom after her diagnosis. I am so dreadfully sorry. I cannot imagine what you must have gone through...I really truly can't. How are you managing?

missumom · Experienced user Joined: 05 Jan 2006 Posts: 65

Hi Harley, Very Happy

I'm glad that your brother's out of the hospital and is recovering at home. He'll be more comfortable and able to rest much better. I think the short fuse also comes with being sick. When you have been diagnosed with an illness (especially a life-threatening one), you go through such emotions as anger/frustration and self-pity. Just be patient with him and reassure him that you're all there for him, and that he needs to fight this all the way. It's not going to be easy, but knowing that the whole family is fighting with him, it's an inspiration. Your brother will get to the point where he doesn't want to talk or hear about it (cancer). In that case, don't bring it up. Talk about it, when he wants to talk. When friends visited my mom at the hospital, she got to the point where she was tired of repeating her story over and over. She told us to brief them outside, then let them in the room.

Your brother is very fortunate for having such a caring girlfriend. He needs that so much, along with his family's love. You mentioned halluscinations...probably from the morphine. What I noticed about my mom was she often confused, short term memory and unable to comprehend some simple things. The morphine has many side-effects -- it can slow down one's breathing, make them sleep more or weaken them, constipation, dizziness, nausea/vomitting, itchy skin, etc. You know, call me naive, but I recently heard about the pluses of marijuana during chemo. Not that I'm suggesting this, but you might want to do some research about it. At dire times, you kinda get desperate for help.

The circle of life....we're born, we live and then, we die. It sucks, doesn't it? Why can't we all live to be 100, and then sleep the sleep of peace. I think by the time, we turn 100, our relatives would be sick of us and they'd be glad for us to go (hahaha). It's awful to see people sick and suffering. You feel helpless because you just wanna do some magic to get them back to normal again.

Chemo is going to be difficult, but everyone's different. Some hardly suffer any side-effects. Chemo is a poison that's intrevenously injected. It kills all cells, good and bad. After chemo, he will be very proned to any infection so if anyone has a cold, make sure they stay clear away from him. Try to get those face masks, just for extra protection. It might make him nauseous/vomit. It might intensify his pain. My dad was unable to care for my mom on his own after chemo. After the first chemo, my mom vomitted non-stop for 48 hours (even with all the anti-nausea meds given). She was even vomitting the IV liquid, but after a few days, she went back to normal (whatever normal was at that time).

You asked how I'm doing....hmmmm....the days are getting easier. I still have my good and bad days. Actually, last night was bad. My dad had a dream of my mom and he said, she looked so young and flawless. She asked him, why he's so sad, and told him that she's okay. She gave him the biggest hug and asked him, if he's leaving her now. He told her that he'll never leave her. My dad's birthday's coming up (Nov 2 Cool

and so is their wedding anniversary (Nov 30). Lately, my dad's been real sad and I don't really know how he's feeling after his dream. Although, I didn't cry at the dining table when he was telling us his dream, when I got home, I cried and cried. I know why my mom asked my dad if he's leaving her now. It's because at the hospital when she was telling us all her last wishes, she told my dad to give her one year out of respect before getting married again. My dad is nowhere close to getting married again. He hasn't even dated anyone or showed any interest in anyone. Sometimes, I wish he would meet someone because it kills me to see him painfully missing my mom. Crying or Very sad

But life goes....

Keep things positive, especially when you're around your brother. When/If he's ready to talk to you about the end of things, take cue from him. Let him start that conversation. This is not easy for your brother and your family. Use each other's strength to help you through. I hope this forum is helping you somewhat through this.

Take care in the meantime and keep us all in touch...I'll continue praying for us all....

Big Sister · Experienced user Joined: 02 Nov 2006 Posts: 68

Hello -- I've been reading your posts and know exactly what you're going through.

My brother, although younger than I am, is dying of pancreatifc cancer that has already spread to his liver, small bowel and nodes. In the 4 weeks since his diagnosis, he has lost over 50 pounds. He is on chemo and lots of other meds, but unless there's a miracle, we will lose him.

I write matter-of-factly because facing reality has always been my strong suit and the family has always depended on me for that. Sill, I grieve already for the loss of my only sibling yet want to remain as strong as I can for him and his people as he heads down this lonesome road.

He was diagnosed one year to the day that we buried our mother. Of my first family, there will only be me left when this is over.

Well, maybe. We just don't know what lies ahead in this life. We don't as the saying goes, deal the deck down here...we just play the hand we've been given. My brother is surrounded by people who love him, he will have Thanksgiving this week with all the people he has in this world and he will feel their strength and love.

I send my strength and love to you as you face the loss of your brother. If he passes, I hope it's swift and without pain. If he survives, I wish for him a long life of pain-free years. This is also what I hope for my own brother. We all know the song....

The road is long
With many a winding turn
That leads us to who knows where
Who knows when
But I'm strong
Strong enough to carry him
He ain't heavy, he's my brother.

So on we go
His welfare is of my concern
No burden is he to bear
We'll get there
For I know
He would not encumber me

If I'm laden at all
I'm laden with sadness
That everyone's heart
Isn't filled with the gladness
Of love for one another.

It's a long, long road
From which there is no return
While we're on the way to there
Why not share
And the load
Doesn't weigh me down at all
He ain't heavy, he's my brother.

He's my brother
He ain't heavy, he's my brother.

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