Waiting for 3 June

Well we will be having the birthday party for my boys who will turn 6 & 2 yrs old this year.

3 June 2017 would be the day which the boys would enjoy at their most with magic show & puppet show, balloon twisting, games and so on. 

I am making this party a grant & expensive one for letting them to remember that their daddy celebrated for them. 

I shouldn’t spend the money & effort as per what most of the people would say. But why not? We have loved one who sick, but that doesn’t mean we should stop celebrating of life event. I want the kids to know they have a daddy who is willingly to spend for them as long as they like it. They have a daddy who really love them lots.

So while we hoping for the red blood cell test to find active bleeding place in my hubby’s stomach, he got sign of infection. The liver test results shot up to the sky. We worry for the bacteria had attacked the liver to cause the damage. Or it might be the paracetamol that given too much.

I asked the nurse to stop the paracetamol last night before any doctor does. 

My hubby too starts to have Low blood sugar and some other electrolyte to correct. Everything seems to giving more problem. But ironically he looks more energetic compared to the admission time. He is sleeping better than before too. 

Well I think the blood work tells something like his body is having lots of stress and I afraid that the damage has done.

I could only hope for his recovery after the infection has been controlled. He just did a X ray and CT scan non contrast one.

I hope for good news in next few more day to welcoming our celebration.

Cheers!

RT (radiotherapy)

Phew!It was Super tensed to myself for stayed Day & night over these few days, seeing my hubby’s bleeding and vomiting.

I started to troubleshooting again. The vomiting disturbed his sleep lots and he vomited all bloody discharge from mouth and sometimes nasal way too.

So the culprit will be the PEG tube that came out causing the poor ventilation of the gastric juice and gas. I told doc but none of them could help and the specialty nurse was on leave. I texted her. She guided me and I pushed the tube in back to the marking level. 

Then, vomiting stopped! As usual, Doctors thought that Haloperidone works. It is never worked if the tube is not set correctly. We tried and had many episode on this already.

So my hubby started to sleep deeply and I gave him lots Lavendar + frankincense oil to calm him down. Few hours later, the bleeding stopped! 

So next 1-2days, he had no bleeding and he seemed more alert to recall for what happened for last few days but not that several time he was telling me that he is going off (dying) already.

Well doctor referred a Radiologist doctor to us for accessing his condition whether the radiotherapy could stop the bleeding side. 

I could finally rest my body and mind for at least few days.

Thinking back, my hubby has been quite lucky for living terminally without much pain and suffering like people who undergo chemotherapy and radiotherapy. I am following few stage IV cancer patient who also had HIPEC like my hubby. One of them had passed away 8mths aft surgery and she did 12 chemotherapy prior to the surgery. Another one just had the HIPEC this year Jan and her disease progressed to terminal in just 3mths time. Well the last strongest lady is still doing chemotherapy for repeated cycles. 

So my hubby has only ONE chemo, that’s all. I think that’s why his liver and kidney function had yet fallen with Long term antibiotics and TPN.

I am again feel gratitude and thank for the fact that he has lots of love and support from friends and families with minimum suffering. 

So friends, let’s stay strong. 

Challenging now

Opps, my hubby condition suddenly worsened by very Low blood pressure and high heart beat at 145-150. It indicates many things like dehydration or bleeding.

He got too weakened and we called ambulance.

So went back to hospital after discharge for 4 days.

After 1-2hrs in A&E, doctor called upon me as usual and she brought me to my hubby and to my shocked and horror, I saw my hubby PEG had lots lots of blood. The whole bag was filled with fresh blood!

Surgeon offered endoscopy to check the source of bleeding but with very high risk as his condition was unstable. It might be gastric ulcer or progression of tumour that penetrates the stomach lining. Both could be possibly exist at the same times and procedure is not going to do the life saving but just to drag on. As internal bleeding may come and go from time to time.

My hubby devastatedly told the surgeon he wanted to move on without anymore procedure. I was in deep sadness but I had to agree for his decision.

So doc will use only medicine and blood transfusion at most to stabilise his condition while got me prepared for the worst.

I talked to my hubby in tears that we are ready at all times and everything has settled for the kids and the families. We should face it bravely.

I kissed him for like million times. 

Then I called all families to get ready and each of them met him individually at the A&E. Until midnight, doc warded my hubby and gave the blood transfusion the next morning.

My hubby now is suffering lots blood loss symptoms and he felt better after blood transfusion. But he has more delusion and could not response at times while talking by himself.

I am wondering is he on his way?

Can the medicine stop the bleeding? The Doctors as usual spoken about how terminal his condition is and how amazed they are to see my hubby actually is still alive with very minimal procedures and medication.

I felt awful when he could not even talk properly with me. I felt like losing him and there is no way I could continue to keeping him.

I told Buddha please guide us and lead him through. 

We continue to chant but welcoming the day to come. 

Back Again

What a most beautiful weeks we spent at home, love filled with laughter and excitement. 

We video a lots and each of them was really a great and joyous one. 

However we decided to back to hospital as my hubby started to have vomiting. He could not tolerate for a sip of water coupled with lots of heartburn. 

We changed his stomach drainage bag but had no help. Doctor told it was obstruction again due to the tumours but I felt it’s more on gastric issues. 

They treated him with IV medication including steroid. I don’t think the steroid is helpful as he started to have thrush and itchy all over body. I requested to stop but doc insisted 2weeks courses. 

Guess what, my hubby stomach started to drain some blood and then they stopped steroid immediately. 

WTH.

They then increased the gastric medication to stop bleeding. So it will take weeks for him to recover. 

Meanwhile we asked to check PEG but the nurse insisted that the PEG tube had no issue but it leaked out from the side of the tube. It turned out to be a Mission impossible when Doctors all thought that the stomach might have tumour too that blocked the tube. 

I got a feeling like being terminally illness patient, all problems is because of tumour. Then just let it be as no further treatment for them. Doctors won’t bother to fix a small issue when there is bigger one there.

WTH.

I am mentally prepared for disease progression but what if it is NOT?

Could they misjudge or mistreated the patient? Like the steroid stuff?

I need to start camp at this “training ground for green Doctors” to carefully check for their next action before they caused more harm.

I recalled what happened on past Jan. I must guard on him.

Until next time.