Back to Jan dilemma 

Hey so we had a great celebration for my boys and they both were having lots of fun throughout the party.

Well doc did not release my hubby reason his BP was recorded Low.

Last Friday my hubby Oncology doc visited with ultimate purpose just like Jan time.

She shared how the bile duct had blocked and caused high bilirubin. This issue is likely not going to get better but slowly causing liver failure. 

However Septic is still the main problem that my hubby would be dead from. My hubby has lots of source for infection and he has getting very weak. The tumour itself carries fungal and bacteria. 

Again she mentioned that how the team supported for home TPN despite his terminal condition and they had reached this far for my hubby.

I guessed that she will probably wanted to stop the TPN just like last Feb when surgery failed.

Well I told her we would need to monitor again as we couldn’t make any decision right now.

But in my mind I started to have thought of what she mentioned about tumour carries bacteria too. Then I googled about propolis and cancer. In fact there are studies for propolis that killed cancer cells and one if the Japanese medical oncology who recommends his patients to do treatment complement with propolis 30% purity for 30ml per day to improve the prognosis and treatment efficacy. I like the last sentence of his presentation goes “We have to live with hope”. 

So for the past 3days I had been injecting propolis into my hubby stomach via PEG even in his sleeps. His fever has been progressed from 38 to 39 deg C. There was once his heart rate went up high 170 and he started to be breathless. Doc called me at 12 midnight to inform that he might get cardiac failure and thus organ failure. I asked my helper to infuse lots essential oil to my hubby and asked him to keep breathing. Luckily everything settled after an hour. 

My helper told me afterward that my hubby actually asked the doctor why there was so many people and animal around them? They were shocked and they thought it was the hallucinations. Then my hubby forgot about everything the next day just he recalled he like flew to someplace, like a scientific places. We thought that he actually went afterlife and sent back because Buddha had called. 

Death in Buddhist is very important that we must not follow the wrong path for reincarnation. I did many ritual kind of stuff to hold on my hubby for not to follow the wrong path. We chant every night for his protection. I hope that he could follow only Buddha’s calling. 

We realised that after fever, my hubby is actually feeling much better. He has less pain, lethargic and sleep better. He has off the IV fentanyl and his vital has been improving. He could even watch his Favourite football game now! 

He himself felt that injecting the propolis has improved a lot. Just he complained for the sharp taste. 

He used to drink propolis drink (2ml a day) ever since Jan for fighting the infection and it does help with the prove of WBC count and CRP unit. But now we are injecting 10ml a day and I hope we could inject more. 

So hopefully mon blood results could surprise the Doctors and so they could continue to support us!

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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.

Home Sweet Home

A near 4months stay at hospital, we thought that my hubby would just pass on in there but we made it out. 

Home TPN has been conducted smoothly and only with twice troubleshooting needed. Luckily we trained well. 

Just few days before discharging, the pain at stomach had intensified so doctor started pain management for my hubby. Fentanyl at 12 mg for a period of 3days. Topping up with some morphine sulfate if needed. 

Just on the third home day, my hubby vomited out the juice and stuff he had from noon until middle of night. Nothing came out from the PEG (gastric juice) drainage. Just I thought we might need to head back to hospital, the PEG started to drain very black juice and my hubby stomach had loosen and relieved so much. The black juice was just like the herb juice he took 1-2weeks ago. We seriously think that the intestine pathway has been closing up so much until the water too get blocked up. The abscess drainage too has nothing come out since 1-2weeks ago. 

However, my hubby felt so much better aft vomited out those water. 

We then proceeded our appointment with TCM oncology doctor. We talked about my hubby back pain. He advise that we could try on acupuncture within the center. It is a gov subsidies TCM center which charged relatively low fees. The physician tackled points at his hand (release back pain) and leg (stomach). He felt the urge of passing motion after 15mins which means the intestine had moving. The physician then stopped and asked to come 2-3days later. 

After acupuncture, he slept better and backpain had relieved a little. So we went tmr again. The physician then targeted at different points and lightly heated up the acupuncture area. 

He felt even better after the second sessions. We went to shopping for some groceries too.

That night, the abscess drainage started to flow again! But with more fluid being drained out. We saw a bit red color and wondered anything happened inside. So we monitored his heart rate and other vital sign for bleeding and infection. 

So far better!

We enjoyed lots days with the boys and so much love and fun for the time spent together. I am contented and feel peaceful. No matter how much time we had, I had the best already. Thanks Buddha. 

Busy for Movie

Hi friends, my hubby is in stable condition with little changes.

Moving towards Home TPN & Antibiotic, our so called nurse Maid had been confirmed but her arrival has postponed to first week of Apr.

We were catching up movies lately and kinda enjoyed with short leave from hospital.

Then guess what, I met my ex colleague and my Neighbour at my hubby ward. It was my ex colleague’s dad who admitted for liver cancer and my Neighbour’s wife admitted for colon cancer who metastasized to brain. My ex colleague told that the other colleague whom I once worked with also has just diagnosed with stage 3 colon cancer. They are very upset now as there are 3 colleagues who had family diagnosed with cancer.

I am speechless at this point.

I feel like our world has changed so much.

I started to read more Buddha’s scriptures to understand more wisdom from Buddha. It is amazed that Buddha already stated ways to cure the disease which called Hemorrhoids but grow in almost every parts of body. We know that it means tumour.

I have no cancer, diagnosed at this point of time but I found chanting would calm my mind and regulate my breathing. Getting Buddha’s truth wisdom, I believe one’s life could really get better. I have yet to be able to lead Buddha’s way in life but knowing it definitely help!

My hubby had a scan yesterday. It showed the abscess collection has reduced its size to very small one. The disease is still stable, as in spreading. Just the blockage of the urethra channel has worsened a little bit, but the kidney function is still normal. Doc said as he is still young so compensated still working fine.

We spoke to doctor. She agreed that we could get TCM (traditional herb medicine) to help on stabilise everything. Since he could not treated anymore and no harm trying out others.

Reason we want to get TCM is because my hubby has Low or very very Low iron in his blood so the Hb has always been very Low than 8.0. He needs blood transfusion when lower than 7.0. But if I gave him 鸡血藤+甘草,Chinese herb to improve blood count the Hb would increase to 8.0. Then I stopped. I did this few round and it works most of the time.

He takes propolis to control the infection and he tried stop taking it for a week, the CRP infection marker went up again. So it seems like these stuff are working so far.

We have new purpose in life. We want to hand copy more Buddha scripture and it could be our worship to Buddha.

So I hope we could out asap and start afresh!

Stay cheer!