5th week after radiation

 Today is the 5th week after I had my radiation on my neck.  A few days ago the pain started to reduce and is not so intense.  Oh, what a relief!  Since a day after the radiation I started to feel pain on my neck and head.  First it was mastoiditis, infection of the ear bone behind/between the ears.  10 days of antibiotic managed to overcome this problem.  However, I suffered another ear infection, which is external and not internal like mastoiditis.  Another week of antibiotic plus ear drops.  

All this while my neck was swollen and stiff.  The pain, intense and sometimes extreme, made my life miserable.  My oncologist and the radiotherapy staff did not warn me of what to expect after the radiation.  I had to take pain killer continuously without a break, even at night so as to be able to sleep.  To suffer pain is one thing but to suffer extreme pain is really miserable and depressing.

I am supposed to suffer from advanced stage cancer.  But now I am suffering from something else, it is really a joke.

Pain

 Pain, day in day out, nothing but pain.  I have to stuff myself with pain killers everyday.  I have to take opioids which is more effective for cancer pain.  Other then taking pain killers there is nothing much I can do.  Last week during the usual doctor's review the oncologist said there is no more option for me.  So now what am I supposed to do, just wait and see?. 

I am having skin atrophy for some time.  This is thinning of the skin which is due to loss of fat and muscle and the tiny blood vessels under the skin can easily burst.  Other then skin atrophy I am now starting to suffer from muscle atrophy, loss of muscle mass.  The muscle from my lower back, pelvic area, and my thigh starts to thin away.  My problems could be due to long term use of steroid and suppression of testosterone to maintain an acceptable PSA level.  Now I cannot sit for a long time as I will feel pain on my lower back (pelvic area) and thigh.  Less muscle to protect the bones.

My neck pain is driving me crazy.  After the radiation on my neck I had ear infection twice and lots of pain from my swelling neck.  It seems it will take 2 to 6 weeks to recover.  Sigh 😞, very sad.

What's happening

 After my ear infection I got uti (urinary tract infection) and had to be on medication for one week 😒.

My neck is giving me lots of pain and discomfort. The nerves around my neck are driving me nuts. Thus I have to agree to have radiation done on my neck.  After getting the appointment date I was told the total cost will come to RM12,000.00!  Just for one session! A few years back I had 5 sessions of radiation and the cost was RM9,000.00 only.  Eventually the hospital reduced to RM10,000.00.  What to do everything is so expensive nowadays, had to accept it.

Sigh!....hospitals are making money out of people's misery.

Another ear infection!

 OMG! What's going on.  A few days ago I got another ear infection.  This is always painful.  I got up in the middle of the night shivering and shaking all over.  I can't even hold a cup of warm water given by my wife.  On top of this I cannot stand up at all.  This is terrible.

I really hated it.  Worrying everyone for no good reason.  This only set me back further from recovery.  Why, why, why.  This is not the way I choose to live my old age, and definitely not right to put so much anxiety and pressure onto my spouse.  I hate it!!!

Two of my neighbours who passed away some time ago used to talk to me about their pain and how they wished they could die soon.  Both were on wheel chair and incapable of looking after themselves.  No old folks would want to live like this.  This is torture😮.

Becoming a handicap

 😒 Well, I am still stuck with stiff neck and pain on the fractured part of my neck after so many months.  Have to wait for the fractured neck bone to heal before I can resume some of my routine exercises/work.  Problem here is due to my weak/damaged  bones it will take a long time for the healing process.  Very sad.  

During my visit to the oncologist after the CT scan, he did not go into details of the radiologist report.  His concern, I believed, is more on my cancer situation.  Thus I look into the report more thoroughly myself to understand some of the conditions of and changes in my body.  More damage to my left side rib bones than those on my right.  The upper and lower spinal cord and pelvic area are quite badly damaged.  The report mentioned destruction of two nerves which control the movement of the neck side ways.  After so many months I still cannot turn my head left or right.  I guessed this is bad news to me.   If the damaged to the nerves cannot be repaired, then I would not be able to turn my head sideways 😒.  Another bad news is I am slowly facing muscle atrophy, loosing my muscle mass. This is also due to nerve damage.  

During my early consultation with the oncologist, he warned that more damage to my bones could  affect my nerves which could restrict some of my movement.  As it is now I am more like a half handicap person.  I cannot turn my head sideways, I cannot walk properly even with a walking stick and thus I am confined in my home everyday.  I have difficulty lying down and getting up and I have to sit on a high chair.  Sigh! Don't know what to expect next.

Oh! more suffering

 OMG the pain is so unbearable!  3 months ago in a near missed car accident whereby I was thrown forward and then backward with my head hitting the car back headrest.  After a few days my neck and head became swollen and the pain hit the maximum point.  Then my head could not move.  My pain killers could not do much, so had to get a doctor to come to give me a steroid jab.  The pain subside in a few days but my head could not move.  

From days to weeks and now months, I am now still not comfortable in a car as there is still pain as the car moves over bumps.  I have been wearing neck brace until now and when in the car I added a neck pillow.  Now I have to keep resting in bed more often so as to ease the pain.

Did a CT scan recently to see what's the problem with my neck and my overall cancer condition.  Mastoiditis.  Infection of the ear bone. Next is fracture of my neck bone.  Today is the last day I am on antibiotic for ear infection.  As for the fracture it is going to take some time to heal.  The oncologist suggested I go for radiation to stop the neck pain.  I'm considering it. 

The oncologist said my cancer is now under control.  However,  more ribs and other bones are damaged as shown in the scan.  I have to be very careful and if I notice any change in my system or other pain I have to contact my oncologist without delay.

I wonder who is it up there that do not like me.

Just thinking

 Yes it's been a long time, a long journey in fact, since I was diagnosed with advanced stage 4 prostate cancer.  I am actually very lucky that my cancer is not the aggressive type and is now inactive.  My latest CT Scan which was done early last year showed my prostate is clear and the two tumors, one on my upper back and the other pressing against my pelvic bone, cannot be detected.  However, I still have to be under active surveillance for the time being.  I still have to continue taking abiraterone+dexamethasone and have my blood test done frequently.

I know I have put up a good fight against my cancer and I am very happy with the result.  The sad point is that my bones are now badly damaged, caused by the cancer cell.  Also due to my old age my movement is restricted.  Anyway, every day I wake up is another day 😊.