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Brother has stage IV signet ring adenocarcinoma of the bladder 
Started by laurafin
28 Jul 2017, 2:55 PM

This is my second time accessing this wonderful service.  I found much comfort here four years ago when my Dad was dying of colo-rectal/prostate cancer.  Now, my brother, at 51 years of age has been diagnosed with the extremely rare signet ring adenocarcinoma of the bladder, which as spread to his peritoneal spaces.  
My brother was 220 pounds 5 months ago, and how weighs 138.  He is 6'2" tall, and so is quite skeletal now.  Literally a skeleton with skin hanging on it.  There is no fat at all on him and all of his muscle has wasted away.  He is emaciated. He has lost 9 of these pounds in the last 3 weeks.
Even though this type of cancer is resistant to chemotherapy, the oncologist is doing it anyway.  He had his first round of it last Friday and it was extremely hard on him.  I think it did more harm than good, honestly, and I'm more than a little annoyed that they have done this and made him so much sicker, when there is no point and no hope.
Gordon has become withdrawn in the last week, is eating and drinking almost nothing and does nothing more than rest on the bed with the tv on, in the dark.  He watches a bit of tv, but not much, and he's no longer reading.  A pastime that he used to enjoy.
The oncologist, in his infinite wisdom, has told my brother that he has a year to a year and a half left!  Therefore, Gordon thinks that he does not need to be in any rush to do his will, because he has a whole year left!!!  My feeling is that he has barely a month left, but I don't want to tell him that.  I think the oncologist is being extremely unrealistic with this estimate.  There is no way that he can maintain life with the rapid weight loss, vomiting, not eating or drinking.  
They will also not do a palliative assessment because he is receiving chemotherapy.  Until the chemo is over, or he chooses to stop it, he will remain in the regular ward or in the Lodge.  I'm quite frustrated at this whole health care situation, because I feel that I have just had the same arguments, same discussions and have encountered the same difficulties that I did with my dad 4 years ago.  I just want my brother to be peaceful and comfortable and I want the doctors to be honest and realistic.  They had also told my dad that he had a year left when he was diagnosed, but he died in 7 weeks.  Maybe I'm frustrated because I've seen this same situation before and they were wrong then, and I think they're wrong now.  I am the only family member left and am my brother's support person.  If he dies without a will, that may turn out to be a problem for me, but the darn doctor has put this idea in his head that he has time, when he really doesn't.  My brother is very passive and thinks that the doctor's word is the honest solid truth.  
Perhaps I'm feeling a bit sorry for myself too.  Our Dad died 4 years ago and I was his caregiver as well, now my brother is dying and I am his.  Our mother is in a nursing home with severe dementia.  My whole family is either gone or going.  
Guilitily, I am also a bit angry at my brother.  Our mother has moments of lucidity, so every now and then, she knows what's going on.  Gordon chose to NOT tell her that he is dying, so that job is going to be left to me when it happens.  Emotions are all over the place right now!
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Reply by KathCull_admin
30 Jul 2017, 8:05 PM

Hello laurafin.
Although I welcome you back, I am sorry about the life circumstances you are experiencing.  You are in a tough position in so many ways. It sounds as though you are filling so many roles, and needing to do so many different things both physical and emotional. I would imagine you are very tired. 

Guilt so often comes along to make things even harder. Do you have access to support through the cancer treatment centre your brother is going to? 

Take care
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Reply by laurafin
31 Jul 2017, 2:33 PM

Hi Katherine:

Thanks for your message.  I AM very tired.  I find this emotional stuff just takes it out of me.  I also have a young family and a full-time job, but being my brother's only kin, it falls on me to do what I can for him.  And yet, I wouldn't NOT do it for him, if that makes sense.
Aside from the moral support of my husband, I really don't have any support from the Cancer Care Centre here.  The chemotherapy nurse has offered for me to call her anytime with questions, but this doesn't address the emotional needs, really.
My brother is not in the palliative care program yet, so I can't even access their caregiver program.
Just taking it one day at a time, but it's exhausting wondering each morning if today will be the day, or before bed wondering if tonight will be the night.  
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Reply by Carlyn
02 Aug 2017, 4:52 PM

Hi Laurafin,

You've got got a lot on and I've been in very similar boat. Time is of the essence so I'm not sugar coating this. I'm extremely concerned at the treatment your brother and you are receiving.

Go over the head of the oncologist. Email the head of cancer dept and tell them you are primary caregiver, and state your concerns. what you've shared here is good imo.  Use the hospital policy on patient care language - copy and paste their exact sentences from their website or wherever it appears in public literature - reference it in your email.  It should be on the hospital website. Start your email with that, add you have concerns that your brother is not receiving their standard of care as stated in hospital policy, add that his primary caregiver is neither being heard nor consulted,  then get into things as you've said above. 

Although i I think the policy push back is all you need to say to get things moving your way. Stand your ground. I agree based on what you've said here that this is very concerning and you need to be heard.  That will make them hear you.

As for telling your Mom... if she is in dementia I wouldn't worry about that. Been there too. Ask her dementia specialists if you feel it's an issue but right now I think your brother is in need of care as priority.

I am so sorry for all this for you and your family. My thoughts are with you. You can do this. I'm here and will keep checking in.


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Reply by laurafin
02 Aug 2017, 8:47 PM

Hi Carlyn:  Thank you so much for your response. The newest development is that Gordon has a blood clot in his arm now!   I have already raised a bit of a stink at the hospital regarding his care, and coincidentally, I just got off the phone with the oncology nurse, who informed me that they wish to stop chemotherapy and they have talked to my brother Gordon about palliative care.  The paperwork is being done today. He will most likely stay where he is, in a regular hospital room (private, though), rather than be moved because they feel he is too fragile to move at this point. 
His estimated time left is 2 to 3 months, but I think it will be sooner.  He has already stopped eating for the most part, and drinks very little.  He can no longer get out of bed and is nearly too weak to turn over in bed.  He can speak just barely above a whisper. 
Having been through a similar situation with my Dad, I think I recognize when someone is getting closer to death, and I think he is much closer than 2 to 3 months, but he might surprise me!
I am relieved that they have stopped treatment, it was so hard on him!  I am relieved that he is going to receive palliative care.  But having someone tell you that it is over is so hard, even though it was expected.  I know this needed to happen, but I dreaded it as well.  On the one hand, I want his horrific suffering to be over, but on the other hand, I'm not ready for him to be gone.   Now we just provide compassionate care, visit, and wait.  
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Reply by Carlyn
02 Aug 2017, 10:57 PM

Hi Laurafin,

I'm relieved for you and for him.  I am sorry for all you're experiencing. My heart goes out to you. 

 You're doing so well with this. We are here for support any time. I'm keeping you and your family in my thoughts.

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Reply by Wingman
05 Aug 2017, 7:37 AM

Hi Laurafin.

These are troubling times indeed. I too understand the struggle as one navigates the choices that are best and reasons those out in the mind. My best friend had no family and I was her Wingman throughout the two year battle with metastatic throat cancer. When the terminal diagnosis came it was overwhelming, at times it seemed more for me than for her. She was in denial throughout the entire time and while I could only respect her method of managing, in the last three weeks it became increasingly difficult to accpet it as her treatment addiction forced some steps that the rest of us saw only as harsh and unnecessary. Our doctor on the regular ward also initially suggested a timeline that seemed absolutely unrealistic to us and things changed rapidly and daily. She too refused to do her Will - "I need to focus on getting well, I will do it in the Fall* she would say. We believed she would not see the change of season, and she did not.

The role as caregiver is like a prescence. I understand the strange balance you feel with the weight and responsibility, the focus and the isolation, along with knowing there is no other place you could possibly be. For me, even as I couldn't believe how I came to be consumed with hospitals, and policies and crisis and existing on the intesne edge of whats next for 24 hours a day, I also knew there was no other way I could do it. That role was also my process - I couln't have had it any other way.

As others have said, you do have the right to question, to be heard, to be addressed. Its unsettling when you need to make every desicion and none of them ever seem to satisfy or settle our hearts. These are the toughest of times.
Day at a time, foot in front of the next. You have a community of support here and I am sending you my thoughts and my strength.
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Reply by laurafin
08 Aug 2017, 3:11 PM

Thank you Wingman.  I am terribly sorry to hear of the loss of your best friend.  Being the caregiver and support person is so challenging and hard, but at the same time, I (we) wouldn't have it any other way.  I would hate for my brother to be doing this entirely alone.  He deserves better.

Due to his body creating blood clots, Gordon suffered a stroke on Sunday.  He has lost the use of his left side entirely, and is no longer able to speak aside from indicating yes or no.  He is not able to carry on any kind of conversation anymore.  This will not likely return.  The nurse has said that over the last three days, he has been sleeping much of the time, or at least resting with his eyes closed.  I went to see him yesterday, but he slept the entire time.  He had decided on comfort care as of last week, thankfully.  He did that while he was still able to express his wishes.  However, the will is still not done, and I wonder if it will ever get done.  I am starting to doubt it.  The doctor I spoke to on Sunday told me that his life expectancy is now down to weeks instead of months.  I am trying to carry on normally, day to day, but on edge as you've mentioned, as to what is going to happen day to day, hour to hour.  I'm waiting for the phone call, which could come at any time.  
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