4. Life is getting Unbearably Tough in 2013

The walking aids that I mentioned in my last post are only to help me walk around inside my garden.. To go out I need a wheel chair.. My relative L who is in charge in a charity nursing home, very helpfully ordered one for me and asked to have it urgently delivered. As a result I could quickly try it out. And my good friend
C could soon take me for drives around Singapore with the wheelchair collapsed and placed in the car boot. ... To help me do some more exercises at home, this helpful relative L lend me a manual paddle-wheel machine for exercising my legs and my arms. ...But even with this exercise aid, the amount of my exercise is minimal. My bowel movements are getting difficult and sometimes less frequent. ...To get myself out of such constipation, at first I used the anal insertion method I used during my own childhood days. This method is of course rather uncomfortable...  Subsequently I asked a nursing homes for the method they use for their residents as these resident nearly all do not have much exercise. ..It uses a sweetened medicine syrup which proved to be a better method. ....

Another problem I faced is worsening very fast... Every two weeks this gets worse. ..This problem has to do with my walking mobility while at home. At first when at home down-stairs I could walk around safely as the floor is level except outside the toilet/bathroom which has to lowered than the rest. Then I notice I have to use a walking stick or cane as I cannot maneuver around low obstacles like floor cushions or low shelves. To help me walk safely, this helpful relative L lends me a walking aid that is like a U-shaped frame with four legs, two on my left, and two on my right. Unfortunately this walking aid makes my walking very slow. My mobility has to slow down very much.....

.. Around this time, I was already thinking about doing a brain surgery which I stubbornly refused to do 15 years ago, although I had my reasons for doing this.at that time... The symptoms then were relatively mild and did not badly affect my lifestyle... As my leg balancing is now getting worse very fast I began to start Google searching and to ask around both locally among friends and in my epidermoid benign tumor Forum ....
. The worst problem from the symptoms that I face so far is when I have to be home-alone for long time periods. Once when I was home-alone upstairs I had to answer the door bell of an important visitor. I had to walk slowly and carefully downstairs to open the front door... By then the visitor had gone away... In general when home alone I had to struggle if I have to work in the kitchen to heat up and and serve my own meal in the dining room as this work typically involves moving and turning left and right, squatting down and standing up while holding something breakable... While these movements are nothing unusual for normal people, they are a struggle for me in my unbalanced leg condition.....  This is the last straw,.. I must do something about these worst problems..... The first action I took is to look for and employ a caregiver, in addition to my domestic helper V who is already fully loaded with my household work. ..Caregivers in the Philippines have to be specially trained for six months to look after people with some disability. Ideally this caregiver is also a full time domestic or live-in worker.... My Philippine domestic helper V has arranged to bring over two of her nephews J and M with this special training to work in nursing homes in Singapore... I talked to both of them... For different reasons, both cannot change to work for me... But one of them has a female classmate in his caregiver class who asked to come and work in Singapore... On knowing that he thinks she is good and he is willing to recommend her, I quickly ask my domestic work-permit agent P to arrange to bring her to Singapore .. Unfortunately this arrangement also cannot work out ...
 The second action I took is to make an appointment to see a brain surgeon... He is , Dr W, at the large reputable Singapore government training hospital called National Neuroscience Institute (NNI).. I have now seen Dr W.  I showed him my 2010 MRI CD and answered a number of his questions...  He then proceeded to book for me a new MRI scan...  I have now done this scan and I am going to see him again on 2 Sept, 2013 to listen to his opinion of my scan results.. .
Dr W may not be the most suitable surgeon to operate on me. But as NNI is a government training hospital, the are not very competitive among themselves and they do look around and refer to a more suitable colleague specialists. ...

 There is one more unbearable problem which MAY NOT be due to symptoms from my brain tumor. I have very bad urinary incontinence. Very often I cannot hold back my urine and wet my shorts or trousers. This is embarrassing. ..What make this worse is that I now have to walk slowly...  When I was going to do an MRI scan, I have to stay very still inside the noisy MRI tunnel for half to one hour...  During the duration of the scan, to deal with my urinary incontinence, I decided to wear an underwear brief fitted with an absorbent pamper...  This was actually not necessary in this case. ..But I still decided to wear this just in case I cannot hold. ....Sigh !

On 2 Sept 2013, I went back to see Dr W to wait for his opinion of my new scan result.  To me the most important words he spoke was that he recommends NO OPERATION for me... The risk of complication is too high... For this type of brain operation, complication means paralyses, coma or death. !!

3. Forming a Tumor Forum and More Walking Problems in 2012

Soon after my tumor was first diagnosed in 1997, I looked online for other people or their spouses with the same tumor and together formed an online forum for discussions and exchange of personal experience and advice...   I did contribute my own research information in the early days... But subsequently I did so only rarely due to my other personal problems.. However, I donated some funds to help this forum become a non-profit organisation. . ..After a number of years, this English language Forum has become established with a good number of active-membership... I myself do get a lot of up-to-date information from this Forum. ...But the active Forum members are mostly from America and some from Europe. There are none from Singapore and neighboring Malaysia and Indonesia. ..Thus the surgeons they recommend are nearly all Americans. . ..

 Near the end of 2012, my unsteady walking gait has gone worse. Already I have to use a walking stick, or cane, whenever I go out for walking exercises...
  ..At that time the government was doing some construction at the pavements or sidewalks near my house. One day while doing my exercise walk, near this construction site, I tripped and fell down...  As a result, One of my ribs got cracked. ...After this incident I always get a person to accompany me whenever I go out. . .. At home, I have to be very careful at my staircase and inside my shower booth. ..For my safety, I installed a number of grip bars all along the staircase and in my shower booth...  As I notice from initial trial testing that this is a good idea, I added more bars around the house. . ..But these grip bars and walking stick still would not solve my problem if I walk out to enjoy my garden plants and flowers...  Later on, at uneven parts of the garden, I have to rely on a walking stick with four short legs near the bottom slightly spread out so that it can stand up on its own.

2. Tougher life in 2011

My benign brain tumor, diagnosed as a very rare benign tumor called epidermoid, has been very slow growing since it was first dagnosed in 1997.. By pressing against nerves emerging from the bottom of my my brain, this tumor gives me damaging symptoms that have also been worsening slowly... BUT by 2009, the pace of tumor symptom damages has worsen faster than in previous years.. Until then, the worse of the symptom damages is the inability of my right eyeball to rotate in coordination with the left eyeball to focus on the object in front that I wanted to see.. But by 2010, my right eyeball had stopped rotating left and right.. This means I cannot judge distance as I have lost my bifocal ability.. This is more than a daily inconvenience.. It can be dangerous, say when I walk outdoor on uneven grounds.. If I cannot see a step or any low obstruction in front of me, I can trip and fall. .....

 By 2011, a new damaging symptom appeared.. .While sleeping at night, if I expose my left leg leaving it uncovered, it gets painful especially by the next morning.. So of course I make sure I keep it covered....  But gradually my blanket cover has to be thicker.... My leg and knee get painful even if I cover them with a thick blanket.  So I had to wear in addition woolen leg warmers and woolen socks.. It is not easy to find these warm items in shops in tropical Singapore unless these shops cater specially to shoppers who go for winter travel....  For the thick blanket, I finally find them under the name 'quilt' in the large international chain store Ikea. ...

 One unfortunate accident happened to me while I was looking for woolen leg warmers and socks.. In a very large shopping mall called IMM, I was slowly walking along the aisle and looking up for the unit number of a winter clothing shop.. I didn't notice right in front of me was a siting bench.. I tripped and fell over the bench breaking my right collar bone.. The orthopedic surgeon that I consulted looked first at the X-ray film of my collar-bone break or fracture, then said to me, as this was a clean fracture, the two sides of the break will grow back and link up as one in about six weeks.. In the mean time, he said I only need to avoid carrying heavy bags with my right arm.. And to strengthen my bones, I also need to continue taking one calcium pill a day. ... .

To relieve the pain at my left leg, I tried to massage my left leg and knee.. Years ago, I used to self-teach myself this technique when I tried to relieve the shoulder pains of my late wife D.. The difference this time is that I now apply it on myself. This give me bio-feedback effect making the massage application more effective.. Then when I continued, I notice at certain body locations, relieving the pain is more effective using my finger tips. ... Then I remember sometime ago I have read about the TCM (Traditional Chinese Medical) technique call acupuncture...This technique is related to another technique called acupressure which does not require needles puncturing into the skin and is thus more suitable for self-treatment...  Both techniques are based on the same system of body Chi circuit points, also called trigger points.  So I read up more about these trigger points and continue to get more practice on myself... From these efforts I make more pain-relief improvements on my leg. ..

1. Introduction, and my 2010 Brain Scan

I have mentioned in my last book, sometimes called my 3rd book, with the title "Surviving my Benign Brain Tumor", that I had a tough life living alone in my adopted country Singapore when after a happy and eventful marriage since 1973, my late wife passed away in 1999 leaving no children. To top it all, in 1997, I was diagnosed with a benign brain tumor that slowly grows in size causing worsening symptoms. ... I tried to keep my life in control by keeping to a number of my well-tried practices with my life as listed below. ... 1. For my well being, I continue to stay and eat mostly at home. Home is a two-storied house that is well looked after by the same hard working and trust-worthy Philippine helper V.. ... 2. Mentally, I avoid negative attitudes and continue to keep positive and open attitudes...   3. Health-wise, I continue to try and stay healthy. .. A... by keeping a strong body immune system, sometimes called body resistance, ..B.. to go for self-treatment of health problems .., and C.. to avoid going to doctors and taking prescribed medicine many of which have undesirable side-effects that require more treatments and medicine. ..4..  To avoid myself feeling lonely, I call up relatives, friends and ex-colleagues to go for private lunches. ..5. To take up my free time, I go for creative activities that I enjoy, like A.. seriously learning to do sculptures and oil paintings, ..and B.. taking part in local art exhibitions. ... But then, after feeling exhausted taking part in two sponsored solo art exhibitions, I changed to do writing and self-publishing books about my life since young... ..   My 3rd and last book was published in 2010. ..This blog is intended as a draft for the subsequent 4th book.. .But I changed my mind and am going to leave this as a Blog.

At that time, like a drunken man, I could not walk in a straight line. This problem is to do with my left leg... Also, my left leg is afraid of getting cold.  At night it has to be well covered otherwise it gets painful in the morning. I was puzzled. The earlier symptoms of my benign tumor are all on the right-hand side of my face... But these new problem are both on my left leg.... Are they also due to my brain tumor or to something else ? . .. To find out, I consulted my previous brain surgeon Dr C who arranged a brain scan called MRI scan. ...   These scans I had not done for ten years... Ten years ago, this surgeon was quite understanding of my conditions and my lifestyle.. But this time he took on a different attitude towards me. ... He was only interested in me saying YES to surgery by him as the surgical team leader. .. .This brain surgeon Dr C was going to use an outdated technique called craniotomy for my tumor that is location at the base of my skull or skull-base. ... But at least I got his reply to what I wanted to ask, that nerves coming out from the brain at the skull-base location do cross over to the other side at the top of the neck spine. . Finally I left his office asking fora copy of my scan CD, saying I would seek a second opinion. . But actually I didn't until years later, see post no. 4.