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Im afraid that my brother is going to pass on sooner than I expect

katz2402
Posts: 13
Joined: Dec 2013

I am pretty new to this site. I am hoping someone can tell me what to expect next. My brother age 42 was diagnosed with stage iv colon cancer and liver mets on 26/11/2013. He has gross ascites and needs to have a tap after every 5 days, He has gross ascites which is very uncomfortable and painful. He has always been health conscious and displayed absolutely no sign that his body was sick. In Feb 2013 he was diagnosed with Hep B which he contracted from his work as an animal scientist. Various tests were done and after a few weks his blood results showed that he was clear of Hep B but anaemic. In May 2013 he complained of pain in the lower abdomen and his doctor had advised that he had been suffering from inguinal hernia but it could be repaired. Whilst waiting for the hospital staff to get back to us regarding dates for surgery (took about a month before a date was allocated for surgery) he began compalining about indigestion and the inability to finish up small meals. I had scheduled an appointment with my doctor again and again various tests were done to ensure we were moving in the right direction. By this time the inguinal hernia was not longer as cause for concern, the digestive track was being scrutonised. An endoscopy was done and that came back negative and no abnormalities were detected. A barium swallow was conducted andof which he couldnt drink more than a glass of that yuckie fluid. The swallow detected a blockage in the spleenic Flexture and this motivated the doctor to do an ultrasound of the abdomen. The ultrasound sound reflected gross ascites and multiple liver lesions. Further to that a CT scan was conducted which confirmed a 40cm tumour, peritoneal seeding, multple lesions in both lobes of the liver and with that shocking report the doctor concluded that my brother had 6-8 months to live.

At first I was very emotional but I have also learned from life challenges that only God can determine what life would be like for each of us. However, my concern is that my brother has been given no treatment and no doctor sees the urgency in this matter. It is as if they know he is going to die and they dont want to waste time and government money on him. I have tried the medical insurance plan that I had secured for him last year some time but through investigations of which I was not aware of, they concluded that his condition is pre-existing and they refuse to pay. Unfortuantely, we have no choice but make use of the community facilities and local hospital services. He had undergone to 4 colonoscopiesand still they are not able to give us the results of the tissue samples in order for us to receive a referral letter for oncology at the hospital. At this point I am totally frustrated because there is so much of red tape and everything that could have stopped this whole process has cropped up.

can somebody please help me. We reside in South Africa and treatment is very expensive so going to a private hospital or a specialised doctor is not an option for my brother. I dont know how to get him the help that he need. Can somebody suggest what I could do or say to get the doctors to give this situation some attention.

 

I know I sound like Im babbling but I feel so stressed, confused, helpless and hopeless.

His condition is deteriorating every day. Tonight he has a very distended stomach, gross ascites, terrible constipation, extreme pain (doctor said he cannot prescribe any pain killer apart from paracetamol until the tissue sample results come back from the lab and that has been since the first biopsy in November), Feet and ankels are swollen and he is out of breath.

Somebody please help me!!!!!

jen2012
Posts: 1255
Joined: Aug 2012

Im sorry I dont have any advice for you. Your post just touched me and I can feel your pain and worry. I hope someone has some advice that is helpful. Im so sorry that you too are dealing with this horrible disease.

Nana b's picture
Nana b
Posts: 3041
Joined: May 2009

Living in Africa, I'm sorry to say that I don't know much about their protocol.  That he does not have a treatment plan is bizarre, and that he is in pain is even worse.    Isn't there someone there that can help you who knows the system?  Try another doctor?  Sorry that I'm not much help. 

 

I hope he gets the help that he needs.

katz2402
Posts: 13
Joined: Dec 2013

Hi to my recent family. Thank you for responding to my story. BAD NEWS: I got my brothers biopsy results today. Its not good at all. His liver is failing and the cancer has spread throughout his body. Ihave scheduled an appointment with a new doctor and am hoping that he will be able to help my brother. I had taken him to a private oncologist this morning and had a tap done. the doctor looked at him and the medical history and you know what..... He was so cold. I understand that this is job and that he sees hundreds of people with the similar problem but at least he must have a heart. All he could say was, " My friend you have a just a few weeks. Please get things in order." Now dear friends, I not only have a sick man who has to endure too much of physical pain, I now have a hopeless broken person who has not stopped crying. I have said all I could possibly say to strengthen my brother and right now I feel like I am already too weak to carry this anymore. It breaks my heart to see him like this .....

fatbob2010's picture
fatbob2010
Posts: 462
Joined: May 2012

Cancer is an insidious and despicable condition.  There are very few good endings when it comes to this disease.  I have no knowledge about hospice in South Africa but that may be a good way to get some of the help your brother and you need.  

Very sorry for the seemingly heartless way the Oncologist passed judgement on your brother.

Peace to you both

Art

katz2402
Posts: 13
Joined: Dec 2013

Hi All,

Just an update on my brother.... we met with the doctor yesterday. What a good man. He broke the news so very nicely to my brother and also told him that he should get his affairs in order for the sake of his wife and baby. He told him that he will help fight as long as he can and will provide some kind of counselling for our parents and siblings. I guess prayers do get their answers.

I am sad that I have little time left with my brother but I would want the time with him to be pain free. He is very slowly drifting onto the incapable side and needs help with simple routine like bathing and rubbing on lotions etc. It is my joy to serve him with the love that God has placed within me. I will continue to be hopeful that God can come through for him but I also have an open mind because I also know that we do not the thought and plan God has for our lives.

With all this at heart... I would be most appreciative if Icould have a bit of information as to what signs I am suppose to observe in order for me to be able to provide the proper care for him. I am not sure what happens as a person goes down hill.

Thank for all the encouragement , my new and dear family.

K

annalexandria's picture
annalexandria
Posts: 2325
Joined: Oct 2011

I lost my sister to cancer, and it's a terrible, sad experience.  Is he in hospice at this point?  We found the hospice nurse to be very helpful.  She was able to tell us things to look for, and what to expect.  In fact, she was able to warn us when my sister was within an hour or so of dying, and her estimation was correct.  I was glad she told us, as we were then able to be with her up to the end.

Peace and hugs~Ann Alexandria

fatbob2010's picture
fatbob2010
Posts: 462
Joined: May 2012

Katz, 

Your courage and dedication to your brother is an inspiration.  Sad to hear of your brother's deterioration.  As you tell of the second doctor's response I regained faith in the practice of medicine and the other helping arts.  

This may help...

http://www.cancer.gov/cancertopics/factsheet/support/end-of-life-care

 

Blessings of peace, comfort and the knowing that as one book ends surely another begins.

 

Art

katz2402
Posts: 13
Joined: Dec 2013

Dear cyber friends,

 

Thank you for all the kind words and encouragement toward my brother. God does answer prayer and I am sure many of you have been hoping and praying that there will be a miracle regarding my brothers treatment... well, Medical aid has authorised chemo and he will begin treatment on Tuesday with one of SA's best oncologists.

Keep him in prayer as we trust God for his healing

katz2402
Posts: 13
Joined: Dec 2013

Dear Friends,

Thank you for your kind words and inspiration. My brother has started his first round of chemo on April 1st. I musr say that I was so relieved to know that there are people out there who respect other people for such courage to endeavour treatment knowing that everything is just about PAINFULNESS. The nurses were so kind and caring toward my brother that even he was so greatful that he kept saying thank you to them for assisting him.

I am just a bit concerned as he hasnt suffered any symptoms from Tuesday but today he is miserable with nausea and he kept bringing up everything that he ate or drank. Today his pain is at its peak to the extent of not being able to take xeloda or even sit up to dring a protein shake. Is think normal or should I be worried???

Another concern is that his feet are now looking swollen and blue underneath. I am aware of the hand and feet syndrom but the colour is blueish grey instaed of red. Is that normal???

His BP was 146/96 and Im not sure if that is okay considering the pain. Cant somebody please help me with these question Pleassssssssse.

God Bless

Trubrit's picture
Trubrit
Posts: 1712
Joined: Jan 2013

Your brother needs to give his Oncologist a call. Even if he (or you) just talk to the Oncology nurses, I think you will need to. 

His BP is on the high side, and blue is not a good colour. I know when my neuropathy was bad, my feet were red and purple, purple was when the Oncologist lowered my dose. And he should not be in pain.

So I would say yes, be concerned. Your brother's Oncology team are there for him, so give them a call. 

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