It will get worse..........

How I wished I did 'not exist' now.  I cannot move much even with the help of the walker.  My pelvic bones are damaged by cancer earlier and after the fall there is no way it can support the top part of my body.  The pain can be unbearable each time the weight is on the right leg.  Lying down and getting out of bed is becoming a difficult task.  

What to do - nothing much can be done except to wait for the slow recovery process.  "It will get worse before it can get better".

This photo gives me some peace of mind.

 OMG! Now I have to use the walker to move around the house.  Other than pain, I am also having muscle atrophy around my buttock area for some time now.  With less muscle my legs' movement seem to be restricted.  As far as I know, if there is no sudden sharp pain, I don't have to worry about broken bones.

The pain is really terrible.  My opioid painkiller is not very effective now.  The past few nights is quite bad like someone whacked my rib cage with a hard object .  In order to get some sleep I had to increase the dosage of the pain killer.  I never expect to be in such a situation.  My blood pressure has shot up from low to high.  Just when I am recovering from my neck problem, this has to happen.

Delayed action

 Had a fall on 26.2.2024.  Quite a bad fall, backwards, in the toilet.  The oncologist had warned me not to fall down during the earlier period of my cancer treatment as my bones could not withstand the impact of the fall and will break in many parts.  Somehow I managed to put my left hand on my back to protect my spine. I could not move for a while and the oncologist's warning caused fear in me as I thought my bones and left hand had broken.

After this ordeal I did not feel any pain in any part of my body.  What a surprise as I expect to feel pain all over my body.  After one week still no pain.  On the 2nd week slight pain on my back and pelvic area. Eventually the pain become more intense.  After my Google, I understand that in a hard fall the brain will take some time to assess the "damage".  Sometime it will be weeks before the nerve will send the pain signal down to the body.

One month after the fall my neck, shoulder blades, both side of my ribs and pelvic area hurt so much that it is terrible to lie down to rest/sleep.  Now walking is a problem because of the pain.  

I wonder what else will happen after this.  

Peace

 Yes it is so 'peaceful' without all the pain to my ear and neck.  I just cannot imagine a one time radiation can caused such a long time misery.  I had done 5 radiation within a week in the beginning of my cancer treatment and I had not experience such pain/misery. 

My bones are damaged by cancer and also due to old age.  Every now and then I will feel pain all over my body.  This is tolerable except in some areas where I am suffering from muscle atrophy.  Not only pain, the area where there is more loss of muscle, I do experience weakness in those areas.  The muscle/fat act as a layer of protection to the bones and without it I need to sit on added cushion on toilet seat, etc. Our muscle also help in the movement of our limbs .  

I just need some adjustment to my movement and the way I do things, meaning, be more careful.  I am happy with my condition now.

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 😊.

Fight, fight, fight - struggle, struggle, struggle.  Day in and day out something will crop up to make my life difficult.  I believed my cancer is now under control.  But to reach this stage I have to go through a string of treatment, injections, medication and change of medication.  My cancer will not kill me yet but the side effects will, or at least will cripple me 😄.  

   

I have been taking abiraterone for about 5 months after trying out Xtandi (enzalutamide) for about a year.  Abiraterone seem to be able to suppress my testosterone more effectively thus bringing down my PSA reading.  This is good news, BUT, the side effects are many.  The side effects of abiraterone, steroid plus low testosterone count really caused havoc to my daily life.  

Insomnia: Sleepless night is very common now.  

Diarrhea/constipation: Every few days I'll get diarrhea and then followed by constipation.

Blurry eyes: My eyes will blur after taking abiraterone and this can last half a day or the whole day.

Mood swing: I have mentioned about this earlier.  Yes this is horrible 😞

Body pain: I sometimes feel like 90 years old or older.  I can't stand, sit or walk for long - a few minutes and I'm exhausted.  I need to take my pain killer every day.

There are many other side effects which I have to deal with my own way.  I am writing all these "nonsense" just to ease my pressure, better than talking to family members who are very supportive. I don't want them to worry too much.

Yes!!

 Yes! Another good result.  My latest blood test done on 31st Oct. showed my PSA dropped to 14 ng/ml.  September's result was 20.66 which was a huge drop from 180, test done in August.  The combination of abiraterone and dexamethasone really works for me.  

This drug is very strong in suppressing testosterone.  Thus, side effects are many and expected.  Well it's either my survival or the cancer spreading.

Good result!

 Very good.  My latest PSA result for September dropped to 20.6 ng/ml from a high of 180 in August.  I was worried that it might go up further.  What a relief.

This could be due to many factors, such as, taking the full dosage of abiraterone, changing prednisone (steroid) to dexamethasone and keeping a strict diet with limited consumption of sugar.  Which ever one is the reason for this good result doesn't matter as I find it is worth all the pain and anxiety in the earlier months.  However the stronger pain killer, tarjin, really help me to overcome my bone pain.

Despair

 

 As I've mentioned before my mood swing can be bad at times.  Sometimes when I hit rock bottom everything seem hopeless.  I really hate all the medication I have to take to keep me going.  My mental state has been taxed beyond the limit and the worst part is I cannot open up to anybody as it can cause anxiety and worry to people near me.  I don't know how much more I can take.

Hang in there

 Yes, hang on and hang in there, don't give up.  My PSA, instead of free fall it is on the way up high.  The latest result - 180.  Requested my oncologist to change the steroid which I am taking with abiraterone, prednisone.  The new steroid I am now taking is dexamethasone.  I have been looking for answers on why my PSA is on the way up while I am on abiraterone+prednisone and this is what I've found: https://pubmed.ncbi.nlm.nih.gov/30099821/ (the change of steroid might help to stabilize the PSA)  

I do not know how's the reaction of others taking the full course (4 tablets) of abiraterone but I could not take it as my body ache is very bad.  My spine, ribs and pelvic bones hurt so much you become miserable the whole day.  To manage the pain I took oxynorm (oxycodone 5mg) morning and night but could not help much.  The oncologist then changed to targin (oxycodone 10mg) which seems to help a lot.  

Why me, why me, why me.

My 5th year of cancer

 

 The past few years I felt more energetic, more active and more positive.  Especially last year I really feel good as all my test result and CT scan came back with good news.  But this year is different.  My PSA keep going up and now my fingers are numbed and have no strength - sarcopenia (I think).  My spinal cord and ribs ache so much I could not sleep, swim and do my usual morning exercise.  Feels like I am going downhill.

Abiraterone Acetate

 After a year on enzalutamide (Xtandi) I cannot control my PSA which keeps going up to more than 100 points.  I cannot take the full course which should be 4 tablets a day as even when I tried to take 3 tablets a day I suffered extreme body ache.  Now I changed to abiraterone plus prednisone (steroid).  

I started with 3 tablets on my 1st bottle.  Now I am on to my 2nd bottle and I am going full course, that is, 4 tablets a day.  I will be having my blood test early next month and I hope to see better result.

In order to save costs I am taking generic product and purchased online.  This way I saved 50% of the cost.

 Our Malay language can be quite colourful.  If you do not suffer any injury you would not know what pain is like.  So far I have used up a huge sum of our savings to keep me going and I am lucky to manage to keep my cancer under control.  I do not complain or whine about the pain I have to endure or the mental torture that's going inside me.  I look as normal as possible in front of relatives and friends/neighbors, so much so people thought I have recovered.  Everybody said I look good! Yes everybody looks good but you would not know what's "boiling" inside them.