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!

Stable

Oh wow, what a dramatic change compared to last 2weeks! 

I must say that we continue to grow stronger and steady in accepting the truth. 

My hubby continues to have stability in his C & T (cancer & terminal) game and Doctors have come to a decision for continuing his TPN support and far more better, a Home TPN. 

A little improvement here, his antibiotic regimen has changed to tablet forms and the infection blood markers showed stable and under control. So infection & disease doctor granted him for all tablets form of antibiotics which gave a big move in our effort to go home with treatment. 

Social worker instead has bigger worry which is Home Support TPN’s cost at SGD 8000 / month excluding private nurse charges. Doc has required 2 caregivers as the TOP criteria for home TPN. They will test both of them and sign for discharge only when both of the caregivers approved for the assessment. 

My hubby has a PICC line, 2 drainages for the abcsess and stomach (in directing out the gastric juice). All of these has to be under great care to prevent infection, which is a common deadly cause of patient like my hubby.

We have approached the Nurse Maid option. Hire someone specialised in Nursing back in their country but also provide close care to my hubby’ condition like a maid stuff. I am glad to know that this option actually exists. 

We have reach all out in attempting the home treatment for my hubby. We are thankful that the Doctors are helping us now. The Cancer things, we have all agreed to let it be and wish the best of it. Although the medical oncologist did not being very hopeful for his prognosis but she still support on our wish. 

The financial is the most and last hindrance we are having now or eventually later. Our saving plus those insurance claim would last us not more than a year and I would certainly be happy for financial problem as it means my hubby survived Long enough! Haha! Good problem indeed! I am ready in getting a loan from my Father in law and the amount would be big for my hubby to survive another 10 years! I would really glad to have the loan. We might need to sell our apartment but my Son (6 yrs old) agrees that we do so. Haha! He is willingly to use the money for daddy to come home. I might need recording for he won’t blame me when he grow up! 

Our “touch” to Buddha has up to another level. I would cry in front of Buddha as I finally understand the way of life. Reading more Buddha’s scriptures, we have greater faith and confidence in leading our life. We both found more meaning of Buddha’s thinking about the earth following with the ancient China’great Sage believe. 

It is interesting to know that over few hundred years of ancient Civilisations of China, the emperor actually degraded people who involve in business. The businessman has the lowest grade of status in society. The reason of the fall of the dynasty was due to the diversion of such status level. Oh well, US has a businessman background’s president! 

Haha! 

Well, we both enjoy lots in reading the fellow Sage’s book. It really reflects a lots of current society situation now. 

So we are taking home leave now catching up the LegoMovie and foot reflexology sessions afterwards. My hubby looks and feel great. So do I.

March, will be a busy month! I look forward to it. 

So, until next time.

No more hope

My hubby’s perforation repair surgery has failed. Surgeon went in and found the repair was way impossible and thus gave up. 

Doctors, each of them approached us for the transfer to hospice, or home care. They would allow my hubby to eat and stop all other supports including TPN and antibiotics. 

The infection might first takes place which he will get fever and then move on.   

How could they make such a recommendation? 

No treatment is a death sentence. 

They kept explained that they won’t prescribe antibiotics or TPN for life Long as this is not a standard procedure to do. It won’t help. 

I told them we want the stability as of last few weeks. That was the best time that my hubby had ever since his condition deteriorated. No vomiting, no diarrhea, no heartburn, no fever, can drink, can move around, play games, joking & chatting with friends and go home for few hours. 

Why would we want to stop it? 

The only difference is staying hospital. Going hospice will be same as hospital then why would we stop the peace?

Moving on, yes we are. We are resting for the surgical wound to recover while the support continues.

We will wait until the body starts to alarm us. Be it infection or all sorts of side effect. 

The point is my hubby looks and feel better after TPN. His body recovers well and we know it. Why we must rush to saying give up for the body takes time to heal? 

Yes we left not much time but why rush for it?

Yes it might not heal and so to give up? No chance doesn’t mean no miracle. 

My hubby had better spirit and motivates to have some good time still with kids da and friends. The few hours is what we need. 

We are having lots of good chatting time at hospital. Between us and those who visited him. 

Doctors, could you please think out of the box? Unprecedented doesn’t mean it won’t work. Not standard procedure doesn’t mean it won’t help. 

If my hubby is in great pain and wanted to give up, we will follow his will. But he is resting well and having good time enjoying the “recovery” process, why must we rush? 

Our last hope of their’s no hope will be condition under control and the perforation healed somehow. He can have this stability for a period of time. 

Can we? 

I cried breathlessly, I could not sleep but I pray for the miracle, still.

Where is my faith? 

Surgery 2nd attempt

My hubby has been better after TPN nutrition, antibiotics control and drainage for the abcsess from the intestine perforation. He did several test and CT scan showed that he still has to go for surgery to solve the perforation issue. 

As he is actually feeling more spirited and better strength, he has more confidence now to go for surgery. 

So everything planned and I watched him being pushed into operating theatre. The doc advised all possible outcome from the surgery as below:

1) The bowel and the scar tissue has made the perforation locating too difficult, they will seal back as not to cause further injury. Clearing of the infection area might not be entirely done.

2) They clear infected area and locate the perforation. But they could not find healthy bowel for stoma.

3) They clear infection, retrieve healthy bowel for stoma but the length might be too short and he will need TPN still for nutrition. 

4) Emergency cases happened and he will be admitted into ICU.

We accepted all possible outcome and we were positive on it. 

So just one hour’s time he went into the operating theatre, doc called me for wish to talk to me. I was still thinking something must be good that they find out and to sort out with me. 

Doc told for they have bad news. My hubby had seizure after the anaesthetic injection, they quickly stabilised his condition and put him to sleep. So the worst case will be he will not waking up and fall in coma. They gave him 2hours time. 

I told them just put him into ICU if he is not waking up. Then I went for my lunch and waited for few hours later. I felt nothing and I was just chanting for him. I told Buddha. I will make good deed by action in every month and commit for vegetarian twice a month and please let my hubby wakes up. 

My heart has no worries and I felt calm. 

Just few minutes later, doc called that my hubby had awakened and everything seems ok. 

The moment I saw my hubby, I was still joking to him whether he managed to see Buddha coming to him? Haha! We were overjoyed that the best case scenario had happened. 

He went for MRI for the worry that the tumor had spread to his brain but scan is ok! 

So doc asked whether he keen to go for surgery again, he said absolutely. Just please change the anaesthetic doctor. Haha! 

Our 2nd attempt of surgery will be this Friday. I chant more for him and we want to recover from this perforation and get out of hospital quickly! 

Stay cheer!

Celebrating Chinese New Year @ hospital

Fri CT scan showed the intestine perforation has yet healed, although there is no leak during the scan. Another good thing is the collection inside my hubby’s abdomen has not grown in size and they called it abcsess. 

Surgical doc wants to drain the abcsess and to do test on the collection for better idea of antibiotics treatment for my hubby. 

They have to do several test to see if the area showed improvement and then will let him eat. 

Overall, his swelling has stopped completely because his weight has back to 44kgs which is after chemo weight. The water retention had put him for 10kgs increase to 54kgs. No wonder he could hardly move during the swelling time. 

He has no pain, no heartburn, no vomiting, regular passing motion, sleep well. Just feel hungry all the time. His gastric juice suction has also gone down to few hundred ml. 

The ward Doctors are still amazed on how TPN helped to stop my hubby’s swelling. I think Dr Radzi truly understands the situation better even he has not seen my hubby. Luckily we insisted for the treatment. 

I realised the ward doctor always quote the worst case scenario and get patient to prepare for it. It is truly testing on our will strength. 

We both enjoy the time to learn the Buddha’s way and discuss on it. We have no rush to return home for Chinese New Year. 

I treasure the moment when I overheard my hubby’s snoring during sleep. I am thankful for he has been resting well. 

Well, first in our lifetime to celebrate CNY here in hospital. I am satisfied enough for my hubby is well now. 

Gong Xi Fa Cai, friends. 

Huat Ar! 😀