Before and After

Hubby's first brain tumour was diagnosed in late 2021.  So it now turns out he only had 4 more years after that.  :( 

When I compare hubby's life before the brain tumour and recently, there was a big difference.  Before, he would be out of the house all the time - for work, drinking with friends.  He was fit from regular visits to the gym.  He would challenge younger relatives to doing planks/push-ups/arm-wrestling and he would win!  He loved alcohol and would indulge in quite a lot daily.

After, he was mostly home watching his Chinese serials. He had continued numbness on the right side of the body - the arm, leg, face.  He woke up with back pain and various other pains.  Worst were the seizures which occurred at random times, even though he was on anti-seizure medication.  He brought his emergency chilled medication everywhere in its insulated bag.  He gave up alcohol.  At the end, his face and tummy were bloated from continued use of steroids to control swelling in the brain.  One side of his head was still hairless from the recent radiation sessions.  

Before, hubby was anticipating a long life.  After, the picture wasn't rosy.  His second tumour had grown fast in 2 years.  The 30 radiation sessions were to to kill off residual tumour cells in the hope of prolonging his time.  Should tumours regrow, hopefully medication could shrink the tumours.  I had worried that his later years might be spent in severe discomfort and distress. 

I am glad hubby never had to deal with this probability.  That he left behind a body sub-optimal in so many ways.  I have thrown away his 'precious' chilled medication.  And bid good riddance to the rest of the medication he was taking.

Only part of hubby's stock

Shock

Shock numbs pain.  How could this have happened?  Hubby was getting better.  He had eaten decently well for 2 days.  I made him pasta soup that day, he had finished it.  While driving home, I made a note to pack a change of clothes for use when he was discharged.  

Cause of death was a cardiac arrest.  Hubby didn't have a heart problem.  Doc said possibly it was a blood clot caused by the lung infection which travelled to the heart.  Hubby hadn't made it for the scheduled MRI scan the following day.  Whatever it was, no point having a post-mortem.  Hubby was gone.  I only wanted to get through the next few days.  Following that then one day at a time.

Our last 'Family picture'

The wake and funeral have been completed.  But our family is now forever broken.
 

Gone forever

How do I write this... my husband is gone.  I am still in shock and denial.  His health wasn't good but he was not in a critical condition.  I will write details down as they happened so that I will not forget.

Tues 18/11:  Hubby had a follow up visit after his radiation.  The MRI scan was clear, no tumour.  Phew!  Good to go until the next MRI scan half a year later.

That night, he had a mild seizure which stopped by itself.  Later on, a more severe one where he asked me to get his emergency medication.  I administered it and the jerking slowed down and stopped.

Sat 22/11 morning:  I was out fetching JE from art class when hubby called that he was having a seizure.  I got home, it didn't look so bad.  I left him a while.  But after some time, I panicked enough to give him the emergency medication.  It didn't work.  I waited a while then gave him another half dose.  Still didn't stop.  Called the ambulance.

Let's get you to the hospital

Followed the ambulance while blaming myself for not giving medication earlier, not calling the ambulance earlier.  

After some hours when hubby woke up, he could only speak gibberish.  Sounded like 'sama sama kala HAISSHHH sama kala HAIHHH' and repeat.  The 'HAISSH' was loud with frustration.  I couldn't even tell what language he was trying to speak and was terrified it was brain damage.  By night-time, although a few real words were there, so was the gibberish.  But I could understand he was telling me to go home first and rest.  I repeated, you want me to go home and rest?  He nodded.

Sun 23/11:  His speech was still unclear but more real words had appeared.  He seemed very tired and kept dozing off.  The ambulance had sent him to the nearest hospital which was a government one - very low nurse to patient ratio.  Some tasks were expected to be DIY by family members.  I had to change his wet diaper myself after an interminable wait for a nurse.

Restraints on his wrists... he tried to get off the bed 

so I had to call for help

Mon 24/11:  He could make sense already. Phew!  Sounded like he didn't have teeth somehow though.  Also strangely he couldn't sit up even though he could move his right arm and leg.  Service continued to be bad.  Hubby noticed leakage on his IV tube and called for a nurse the whole night but none came.

Tue 25/11:  Before this hubby didn't dare eat anything for fear of pooping.  This day, he had to poop.  Apparently family members were expected to change poopy diapers.  Sigh.  Guess that would be me.  Me who hadn't changed diapers since SE was a baby, oh, over a decade ago.   Being an adult, hubby had way more poop.  Every time I wiped, the yellow was still there on the wet wipe.  But eventually got the job done. 

The doctor at the Emergency ward discharged him and advised us to send him to UMSC where his records were. She said he was stable, didn't have more seizures but he needed to be in a neuro ward and the one at that hospital was already full.

We got a private ambulance to send (SNJ services, easy to deal with).  Hubby's oxygen levels were low so he was given oxygen in the ambulance.

Off to the next hospital

However when he arrived at UMSC, his doctors were all out of town and he couldn't be admitted.  The only way in was via Emergency.  Finally he was accepted there but oh, it felt like going from the frying pan into the fire.  The Emergency waiting area was full of patients.  No food nor water was provided.  No stretcher was available so he was still on the ambulance one (extra charges at rm100/hour).  He kept saying it was a mistake and I agreed this was a terrible situation.  In hindsight we should have pushed to be kept in the government hospital!    But they WERE doing tests on him, coming every so often including to wheel him off somewhere.

Wed 26/11:  Still in Emergency.  They continued to do tests.  The CT scan showed some fluid build-up in the brain.  He contracted lung infection and was started on antibiotics.  He was admitted to the neuro ward at night.

Zzzzz

Thu 27/11:  A decent place finally.  The doctor came and said if not for the lung infection, she could discharge him already.  The fluid in the brain was possibly normal for hubby after his recent radiation sessions.  A second MRI scan was ordered to make sure.  Hubby strangely still couldn't even sit up by himself.  My mum had a blood test at the hospital and dropped by to see him (I had gone off to buy the new medication he was prescribed).  She later reported that he was better than she expected.

That night, I stayed till 8pm.  It was raining heavily and Grab was difficult to hail.  It took time for me to get one, head to my apartment, pack some things, pick up my car and drive to my parents' house.  Just before I reached, at 9.43pm, the hospital called me to return immediately.  Hubby had collapsed and they were doing CPR.  Way before I reached, he was gone.  Time recorded was 9.50pm.