Update from December

harley · Regular Joined: 01 Nov 2006 Posts: 11

Hi, this is Harley again. I first posted back in December ( http://cancerforums.net/viewtopic.php?t=4781&highlight= ) about my Big Brudder who's dying of pancreatic cancer.

Life's been a whirlwind lately and I haven't been on the forum. But today I find myself here reading, and I am again in awe of the strength and courage shared here. My brother won't be with us for much longer, so I thought I would post an update.

Adjustment does not come easily, and it still feels very surreal to stop and say to myself "my brother is in hospital dying of cancer."

He stayed at home (i.e. back with my mum and dad) for as long as he was comfortable. He was in his room most of the time, trying to shut out the noise of the everyday household and with his door closed usually. If the door was ajar, it was okay to disturb him. He very much wanted his own space and just peace and quiet. However with him choosing to be rather disconnected from the rest of the household (whether out of anger, not wanting to see our pain, fierce independence...not sure) the nights became frightful for him. He became concerned that no one would hear him in the night if he was in distress. He also knew he was going to deteriorate to a point where he would find it invasive for family members to care for him. After a visit to his oncologist in April and getting an earful for not being "in care" yet, he came home, went ballistic on my family for not PUTTING him in care (*sigh*) and shortly after he had the good fortune of finding a single room at a facility here in town.

That was beginning of May. It's now July 8 and he's still with us, but only barely.

Some weeks ago, we were able to take him outside into a sunlit courtyard at his facility, where he could enjoy the warmth of springtime and the singing of the birds. We would wheel him out in a chair, and he'd close his eyes and doze most of the time (meds). Some days he was more alert than others, and we would have little conversations in the garden (during which his dry, sarcastic wit shone through despite the weak voice and the meds) and this state was kind of okay for us to bear.

Then there was the visit when he was so medicated that he didn't know I was there. He looked at me but was unresponsive. I stayed for a while but found it too upsetting. After that I went on leave from work and I'm still on leave in his town now.

A couple of weeks ago he got a hard lesson in how weak he's become. He got up from his bed to use his washroom and his legs gave out. After this fall (he didn't hurt himself physically, but as you can imagine, he had to use the washroom and didn't make it there so he was very embarrassed), he's too weak to leave the bed now and can't use his washroom anymore. This must have been horrific for him; he's such a private person.

It has indeed been a roller coaster for us...kinda like a box of those snacks where you reach your hand in and never know what you're gonna get. Just turning into the hospital driveway puts my gut in a knot. We really don't know what we're going to get. But lately it's been the same:

His feet are very swollen, with some purple mottling. They've been this way for weeks now. We were told it's because he's bedridden and the circulation isn't functioning properly. I thought mottling of the skin was a sign of the "end".
He's in a diaper now.
He's not reading, watching or listening to tv. There's a big clock on the wall right in front of him and that's all that's in his immediate view. He has to turn to look out the window. He's not doing much of that.
He is dozing/sleeping most of the time.
He's in pain (back) and receiving strong pain meds that make him woozy and not always make sense.
I cannot determine what is illness and what is meds anymore.
He's not eating much besides maybe any pudding that comes for dessert, apples, and milk. He's drinking lots of milk. He's getting changed over to Ensure instead of Ensure Plus (which comes in chocolate) as the Plus formula has too much in it that's hard for him to digest. He won't drink the regular Ensure as he hates vanilla.
His voice is very weak; his mouth seems dry when he tries to repeat himself.
His hands are starting to get mottled between the fingers.
I would like to wash his hair and might find a dry shampoo to do so, if he'll let me. Hospital is not doing it. He would hate for his hair to be the way it is right now - the man has more toiletries than I do!!
He has marvelous cheekbones that I wish I didn't know about.
He is frail and bony now. I'm afraid to hug him too hard but he somehow finds miraculous strength in his goodbye hugs for me. Squeezes me hard!
He's still talking when he's awake, and still sarcastic as hell.

I know he's got a "typically" (whatever that means with cancer) older person's illness in a younger man's body, so maybe he is holding on longer than what is expected, but my God, how much longer can this go on?

You do find yourself praying for mercy.

I'll try to get back on this forum again before too long. Wishing you peace in your individual experiences with this horrific cancer.

freeio · Posted: Mon Jul 09, 2007 1:03 pm Post subject: A hard way to go

Harley,

What you describe is, unfortunately, not unusual for those who frequent this board. It is very hard to watch someone dear to you die this way. Unfortunately, neither the patients nor those around them have the ability to change much of the outcome. Pancreatic cancer is very nasty stuff, and even the best treatment, done well and in a timely manner, can do no more than buy a bit of time .

I look at my own case, and my biggest dread is being a burden on those around me. By now, all thoughts of privacy have faded. My life is an open book to anyone who comes near me, because what is happening cannot be hidden. What they do not know about me, they soon will if they stick around, because life at the end of PC is harsh, nasty, and no fun to be near.

That having been said, I am confident that he knows that he has been cared for to the end. You have not abandoned him, and he knows it. Having done all you could, at least you will not be dealing with feelings of guilt on top of the other forms of grief.

I wish you well in your seeing this matter through. It is impossibly difficult, but it is still the right thing to do.

Marty
_________________
-------------------------------------------------
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

brainman · Posted: Mon Jul 09, 2007 1:27 pm Post subject: Re: Update from December

Harley, if your brother is not eating anymore, the end is near... days rather than weeks. I encourage you to touch him and talk to him even if it seems that he is not responding. No one can really tell you how much he is able to understand. However, the brain is a fascinating organ! Even when the rest of the body is shutting down, the brain is still working. It is obvious that you have a great amount of love for your brother! I think he can "feel" that even if he cannot respond to it.

I will continue to keep you and your brother in my thoughts and my prayers. Keep us informed.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

harley · Regular Joined: 01 Nov 2006 Posts: 11

Thanks, Marty and Jim.
Marty, you're so right about the absolute nastiness of this. It's hateful and merciless. On top of this , my brother comments frequently that he is receiving too many visitors, too frequently. Today I finally told him that if his kid sis was in that bed, he'd be there every minute of every day beside me and wouldn't give a toss what I said about it. He laughed at that. I tried to convey that the people coming by are people who love him, and he would do the same for us all. I try not to be hurt by his comments; I can't imagine leaving him alone. It's bad enough that he'll likely be alone at his final breath.
Marty, are you a first-born? My brother had the same awful dread about being a burden. Maybe you are used to easing the burdens of others, while taking care of your own troubles. This must be a terrible feeling for you. I hope you will consider that while you look on it as a burden, those who love you will consider caring for you and ensuring your comfort an honor. It is a very special privilege for me to take part in my brother's care and comfort. You will not burden those who love you. You'll all be sharing something very different and very special....please let your people love you.
I know what you mean about your life being an open book; my heart went out to my brother when his every twitch became something to report. It's the only way for people to properly care for you.
I'm amazed at your journey, Marty - it's astounding!

Jim, I'm sure you are correct. He's virtually stopped eating. Up to a week or so ago he was into apples (for a while!). But they don't interest him anymore. I think he tries to eat when a meal comes but nothing appeals. Milk is his big thing right now. They got him plain Ensure (not Plus) in chocolate; looks like he doesn't like it much.
I do take some comfort (we'll take it where we can get it...) from the fact that he WANTS to eat, he TRIES to eat. The will to eat is there and he's not completely shutting down (I bet that's soon, though).
He's definitely responding and all my hugs, kisses and "i love yous" are warmly accepted and reciprocated. I can't stand watching someone who's been a rock to this family for 47 years just waste away. I'm sure all of you can relate so I don't know why I even say that...it's just so striking and so surreal.
I want to be there at the end of his life. I don't know how but I want to. I am realistic enough to know that the odds are, he'll be on his own, at a dark hour, but who knows.
Speaking of the end, and signs of it, which seems to be important to many of us...someone wrote on this board once about the earlobes turning in towards the back of the head...is that for real? I looked today and saw that and thought, no, you're a desperate person looking for a sign, just leave it.
I just wish I knew what to do, besides love him. There's nothing of course.
Jim, you too are an inspiration. I'm glad people like you and Marty (and so many others whose stories are found here) have found this forum and contribute to it. Bless you all.
Thanks so much for your understanding and support.
I'll update again soon. Off I go to try to find sleep.
Goodnight.
H.

brainman · Posted: Tue Jul 10, 2007 12:29 pm Post subject: Re: Update from December

Harley, if he is still drinking Ensure, here is a suggestion: Make a milkshake out of 1 can of Ensure, one cup of ice-cream (any flavor), and protein additive (like muscle builders use). You can also add other fruits to these shakes. My father liked strawberries and bananas. At least that way he gets some nutrition. Make sure he is on a multi-vitamin with essential minerals too. One time I tried to add my father's vitamin to the shake, but he did not like it. Experiment different things. He likes apples? How about apple sauce? Don't worry about calories or fats now. Your focus needs to be providing your brother with foods that he will eat.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

reenie · Posted: Wed Jul 11, 2007 10:24 am Post subject: Re: Update from December

Hi Harley,
How wonderful that you can be there to help your brother. It really is an honor isn't it? I hope this very difficult, personal time brings some comfort to you later. While I always long for the days before Pancreatic cancer barged into our lives, I sometimes wish to even be back in Sam's last weeks- there was an almost holy atmosphere. I remember climbing on the hospital bed in our living room during his last days - not knowing if he knew- knowing that I knew had to be enough.
You mentioned my comments about the earlobes. You gave me a gift by asking about it. After I posted that I truly expected to hear from 10 people saying that that sign was helpful or that they too had heard of it. Frankly the deafening silence on the subject had me feeling like a ghoul. Because we had been told to look for that sign, we saw it. I don't know if we'd have noticed it otherwise. It was a subtle change but it was a change. There were enough other signs but we didn't find them to be as clear as what the literature suggested. I have since searched the internet looking for mention of it but only found it once in the synopsis when I googled a list of words like "earlobe hospice sign" or something like that. www.trinityhospicefoundation.org/signsnsymptoms.htm came up but
I couldn't open that page when I tried so I don't know if it's still up or it could have been due to some restriction I have on my computer.
As I understand it, it is a sign "veteran nurses" talk about among themselves. Anyway, our daughter, 15 at the time, was the one who recognized it. It was another of the sad beyond all reason moments we had, but also a moment when we knew we were all there and all focused on this wonderful man for however long we could have him.
We didn't have the food issues you are dealing with which I guess was a blessing. Eating is just so basic- I believe your brother would if he could. It must be so hard not to insist he eat, on the other hand, sadly there is no cure and it's sounds very much like he is nearing the end so if he can't or won't eat what will that really change? Sounds to me like you are doing all you can to honor his wishes and surround him with love. At the end of the day, isn't that what we would all want? At this moment it probably seems absurd to use the word fortunate in the same sentence as your brother but in reading his story, I come away feeling he is so very fortunate to have you in his life.
Wishing you Peace and Comfort. Reenie

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