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"Concernedgal"- please check in with us

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hello Concernedgal,

With all that transpired on your thread, I do hope that you have not been turned off to coming and posting questions on this board- I haven't noticed any more postings from you since that time. We are all concerned about you and your brother.
Is there any news to share about your brother? I am hoping some more options were looked into and that he is doing better. Please let us know-

Blessings,
Lisa

concernedgal
Posts: 33
Joined: Feb 2009

Hi Lisa

Sorry Ive just been worried over the past few days and scared to post any news incase I "tempt fate".

My brother had a drain inserted yesterday to help the bile exit. They discovered 2 sides of his liver bile ducts are blocked and according to the oncologist that's good as it means it's not the cancer.

Today he had 2 stents inserted and is now having a blood transfusion. 4 units which I think is 2 litres. Quite worried about him and hope he pulls through and the stents do their job.

Really feel exhausted and I'm not the one with the disease. It just seems to be spreading so fast! Every day my heart is pounding when I hear my mobile and I'm so scared for my brother and family.

Take care

Romana

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I'm glad they were able to insert the stents! I am sure your brother will be feeling better very soon! Take care of yourself, get rest and eat right! You have to care for yourself in order to help care for your brother!
mary

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Romana,

It's good to hear back from you. Ok- the fact that his liver bile ducts were blocked and that it wasn't the cancer causing the problem is good news, yes?

The stents will allow the bile to drain properly and he will hopefully start looking and feeling better soon. The blood transfusion should help rejuvenate him, as well.

You need to get some rest, girl! Could you possibly contact your doctor about taking some prescription meds for dealing with your stress and anxiety over all this? There's no shame in asking for help. You're not the one with the disease, of course, but caregivers have a very tough job of having to watch everything that's going on and deal with the feelings of being helpless to make things better. You're doing the best you can right now, but maybe you need a little help- just a thought.

I will continue to pray for your brother- and for you, too.

Thanks for letting us know how things are going.

God bless,
Lisa

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

Romana,
I'd would like to apologize to you for letting myself get wrapped up in the negativity thrown out to people by others. It was totally uncalled for.

It sounds like your brother is having a very rough time. I had a bowel obstruction at one time and they had to pump it out through my nose, not fun. It does sound promising that this bile ducts are blocked and it's not cancer in the liver.

It is such a hard time for everyone. I'm in the middle of it so my perspective is different than others. I just have to get better, not sit and wait for news.

My thoughts and well wishes are with your brother and you.
-phil
Please keep posting as you need to.

concernedgal
Posts: 33
Joined: Feb 2009

Thank you for all the replies.

Phil - No need to apologize.

Just found out he may have less than 2 weeks left. I'm devastated

VickiCO's picture
VickiCO
Posts: 934
Joined: Oct 2008

There is not much I can add except that I wish I could be there to hold you and give you strength. Know that you, your brother and his family are in our thoughts and prayers.

Vicki

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

I'm so sorry. I wish you both strength and as little suffering as possible.
Not that this makes it any easier, but some people leave for work in the morning
and never make it home. You don't have the chance to say goodbye and how much they mean to you.
{{{hugs}}}
-phil

dixchi's picture
dixchi
Posts: 438
Joined: Jun 2008

My thoughts are with you and your brother; this is a difficult time
for all; I do hope things go smoother and you can get some rest and
your brother can be pain free.

Hugs,
Barbara

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Oh Romana,

I'm so sorry- here I was sounding in my last post peppy like it was good news- well, it seemed like it anyhow. I had no idea he was so close to the end- I'm soo sorry to hear this news. I wish I could actually give you a hug and be there to help you through this. You're in my thoughts and prayers. Who knows- maybe it will turn around and he'll actually keep going a lot longer than that. If not, though, well cling to the loved ones around you to get through. I'll be praying for you and for your brother to either pull through and do well or- if it is his time to go- that it will be without pain.

You take care of yourself & please check in with us- ok?

Hugs,
Lisa

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I am at a loss for words, Ramona :( I echo what everyone else says but I know that words aren't really all that much help right now. If you feel comfort in numbers, then there is a whole gang of folk over here in North America who are sending cyber-hugs and anything else that will give you and your brother some ease.

My thoughts are definitely with you, your brother and his family.

Hugggggggs,

Cheryl

kmygil
Posts: 881
Joined: Feb 2007

So sorry to hear the news about your brother. I am praying for you both.

Hugs,
Kirsten

concernedgal
Posts: 33
Joined: Feb 2009

Thanks for the kind words everyone.

Cant believe this disease has won. He didnt even have a chance. He was diagnosed 18 January 2009, had 2 failed cycles of chemo and now this.

Dont understand why the surgeon went ahead with the stents when he must have knew he only had a short time left.

It was my dad that told me.Hes so angry and was a holy man but now has given up on his faith. He said the nurses kept coming in, taking his temperature and blood and for what?! They know hes going to die so why put him through this.

His girl was 2 yesterday and we will now remember on every one of her birthdays thats when we were told this awful news. Why has the cancer spread so fast, why didnt he have more symptoms, why so young? God Im so angry! x

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

Hi,
I've been following your posts, I didn't reply earlier because I know exactly what you are going through, plus going through my own thing, I didn't want upset you.
I'm from England, I don't know how it is in Scotland, but is there no way you can get a sceond opinion? My mum had breast cancer, which she kept hidden, then in Jan 2007 she was rushed to hospital with fluid on her lungs, and from there we found out she had breast cancer, which was terminal. The doctors did not have much hope for her, and really thought she would last a few weeks, she even got a stroke while in ICU. She lasted longer then the doctors expected, she even came out, got to see me get married, but passed away 10 days after when I did.
My point is there no way you can get your family to push for more answers. Your brother is still so young, he is fitter then my mum was, hand on heart I really can't believe there is nothing else they can do. I know my dad fought so hard for my mum for her treatments etc, when all the doctors wanted to do was give up. I really, really hope they can do something, they can't give up so soon

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Ramona, I am so very sorry to hear this news. There's nothing I could say to take away your pain. There's no way I can understand what you and your family are facing today.

May I pray for your brother's comfort during these next weeks and for your family to find peace and healing for broken hearts and lost dreams?

Again, I'm so very sorry.
Diane

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Dear Ramona,
I am very very sorry that your brother and your entire family are in having to suffer through this very difficult time. Do they have hospice care available for your brother?
I will keep all of you in my prayers.
Aloha,
Kathleen

concernedgal
Posts: 33
Joined: Feb 2009

He got married yesterday. Was such a sad day, they had to get married in the house as he didnt have any strength to go to the chapel.

His best man is his friend who hasnt seen him since early February and he weeped when he saw my brother. He has lost so much weight and is so yellow and frail looking.

His voice has changed also, doesnt sound like my brother. When everyone left a Doctor from the hospice came out to have a look at him and asked if he would rather be at home or a hospice and he said home. The Doctors and nurses will continue to come and check him over almost every day.

After the dr left my brother wanted me to go up to his room. We just had a general chat and I had to fight back my tears. His eyes were rolling about his head, his eyes were bright yellow and he had the Erbitux rash all over his face. He was still in his wedding outfit and so far was the hardest thing Ive ever experienced. I came home and just cried for hours.

We were looking at pictures of him for last year, so handsome, happy and strong and then this disease just steals all his dignity

Romana x

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

Thank you for the update. I'm happy your brother got married, that must have brought some joy into everyone's life if only for a little while. Life is a gift from the universe and I can see how much he impacted and touched all of your lives. His story has impacted mine too in some ways.
I'm sorry that things do not look very good at this time.
My heart goes out to you all Romana.
-phil

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Romana,
Wow- I just had the tears rolling down my cheeks as I read your post. How is his now-wife dealing with all of this? Obviously it's horribly hard. It's nice that they got to get married, since that's apparently what they wanted to do and, as Phil said, that must have brought at least a bittersweet joy for a little bit. Such a heartbreaking situation-
Keeping you and your whole family affected by this in prayer. I don't know what else to say, except hold on to your loved ones-

Hugs and prayers,
Lisa

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Dear Romana... as the others have indicated, there really aren't any words that anyone can give you that will make this experience any easier to bear. It is so hard to look at the "how come?", "why my brother?", and also the "why am I having to go through this very painful experience that will always impact my life?" These are very valid questions and yet, no one has any concrete answers to them.

I'm not sure what your beliefs are, but I'm willing to guess that whatever they are, this experience is testing those beliefs big time, to the point it may be shaking them up so you aren't sure what you can and can't believe in. WHY is this happening to your family is the question that comes up 24/7 and no one from friends to doctors to "send me a sign" is able to give you an answer. And that is extremely hard... to have to go through this very painful experience and not have an answer as to why you and your family are going through it.

I had an appt. with my oncologist this past Friday and it was a very upbeat positive appt. for me (on a personal level). She explained to me in language I could understand that yes, I do have "Stage IV Advanced Colon Cancer", but the spread of the colon cancer to my lungs is considered "indolent" or lazy, slow growing. So I told her... "You know, when someone is hearing for the first time that their cancer has spread, that is an enormous shock just hearing those words and then being told they have "advanced colon cancer". The whole mind and body goes into shock. Perhaps when you are telling them this, you should avoid telling them (even when they ask) the hard reality that the prognosis is not good... 2 months to 2 years maximum". I mean, here I am a year after being giving my time limit and I'm healthy with lung mets that are indolent. If they start growing, we will treat them. This is a much different sentence than being told the end is evident and it is near.

She looked me in the eye and said, "Cheryl, you are one of the lucky ones. Treatments and meds have come a long way in the last 10 years so there are some like you who are doing very well, considering that they do have advanced cancer. Unfortunately, there are more that don't have the same reactions to treatment. Advanced cancer can move very, very quickly and with colon cancer, most times there are no symptoms so by the time you feel them or notice them, the cancer has advanced too far. So when a patient is DX'd as Stage IV with a spread to other organs, we have to tell them the reality about what advanced cancer is. It would not be in the patient's best interest to give false hope. Better to prepare them for the expected outcome and turn out to be wrong than give a hope that they will cling to, and it turns out to be wrong."

That makes sense to me now that she has explained it... but it DOESN'T mean that just because you know the end is near, it makes it any easier. Why wasn't your brother given a chance to respond to treatment? He only had a couple of treatments before it was determined they just aren't helping. That, unfortunately is the nature of the beast and depending how advanced and where the cancer is, will determine whether the cancer will respond to treatment. Why was he fine just a couple of months ago and now it has advanced so fast it's hard to recognize him? Again, the incredible nastiness of this aggressive cancer.

No, he did not do anything to deserve this cancer... or to deserve one that is so aggressive. No, I do not believe a higher being picks and chooses who he/she is going to make suffer. Nor did any of his family members do anything that caused this experience to happen in their lives. Unfortunately, this is life as a living cellular being. When one person gets something like a bad cancer, it doesn't just affect that person. The pain, loss and feeling of helplessness affects everyone who is in his life ... and that experience will affect you for the rest of your life.

As Phil mentioned in his post, life is a gift from the universe and I won't go into detail about my beliefs but if you can get your hands on a book called "The Journey of Souls - Case Studies of Life Between Lives" by Michael Newton, PH.D, this is a wonderful, comforting book that explains what happens to our souls/energy when it's time to leave our physical human body.

Well, for someone who had nothing to say, I guess I did babble here. But throughout all this pain that you are going through on behalf of your brother, I want you to know that you have friends over here across the pond that, a few months ago, you didn't even know you had. Please come here and vent, or if you just want to chat to people who totally understand what you are going through and the fears you have... even if we don't have answers to all your questions. We are here for you!

Hugggggggggs,

Cheryl

concernedgal
Posts: 33
Joined: Feb 2009

That was a good post Cheryl and your right, no-one can answer the questions.

I say to myself everyday, I wish and why all the time. For someone so young, 2 year old girl and a hard worker its just unreal how things change and your life is ruined.

He has an appointment next week to see if the stents have worked and if chemo can happen but hes still badly jaundiced, is now 133 pounds and at 6 foot thats so skinny.

The nurse commented on how yellow he is and even if the stents did work he would be to weak for chemo. I used to believe in God but lost my faith since everything ive prayed for never happened. Just got more bad news each week.

Wish everything could go back to normal and I was moaning about the usual things, work, money etc. but now our lives are changed forever and we will never be happy again x

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Oh dear heart... I hear you and feel some of your pain. Obviously, I do not feel the same as you and would be lying if I said I did since I'm not in the same situation as you are. But although, right now, you can't see the forest for the trees and it looks like an every spiralling dark tunnel you are going through, please don't give up on the fact for all the darkness, there will be light as well.

It will take some time to get over what you all have been experiencing and you are right, you will never ever forget this time or your brother. But time and the human brain has ways of allowing you to cope through the worst of times and then taking care of dulling the edges of pain as time goes on because NO ONE could ever possibly live the rest of their lives in this much pain. It won't happen over night, but with time, you'll start noticing the little things and then it will get better... and the edges will become less defined.

And you must remember, you have this adorable 2 year old niece who is going to grow into the most wonderful, inquisitive child and for her sake, you are going to want to show her a world of love and caring and all things beautiful. Right this very minute, it wouldn't be possible... abut as she grows, you are going to want to be a very special part of her life... and that IS going to be such a happy time.

So yes, you don't have to think about it now, but down the road, things will become happy again. Never the same as before, but happiness will return and it will all of a sudden hit you with no notice :)

Hugggggggs,

Cheryl

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