I suddenly cannot see clearly anymore. I can read and type with my reading glasses on but anything more then a meter away becomes blurred. It's causing me to feel dizzy and walking is an ordeal instead of a pleasant time breathing fresh air.
I looked it up and there are many possible causes, including disturbing ones. One possibility is the muscle relaxant drug I received to recover from the tension in my neck. I decide to stop taking those pills immediately as a preventive measure. My neck is improving anyway with regular physiotherapy with only 10 days left before flying to Japan for the next treatment.
As I wrote yesterday, my surgeon checked me up and said the muscles and nerves were working fine, so it must be something affecting the muscles temporarily.
As this double vision continued for another day, I looked for eye exercises to help the eyes recover from whatever the surgery had done to them: Eye Asanas, in other words yoga for the eyes.
I start doing this and I feel the eye muscles in the left eye ache as I do it and afterwards focusing improves. This gives me hope so I will continue with this. On Tuesday the next visit to my surgeon is planned for another cleanup. I hope focusing has improved before that.
Exercise 1: Place your index finger about 12 inches away from your eyes, gently gaze at the tip of your finger for 5-10 seconds. Now gradually and slowly move your finger closer and closer to your eyes. Don’t poke your eye out! Practice this for 3-4 minutes, a few times a day. Afterwards, blink or squeeze your eyes shut to relax them.
Exercise 2: When you are outside, practice looking at something very close, then gradually move your focus further and further away. This works best for me when I’m walking down the sidewalk somewhere, or in an open area. Practice this for 30 seconds or so at a time whenever you’re outside.
Many of our eye-related problems come from a lack of tone and flexibility in the eye muscles. If we practice eye asanas, yoga for your eyes, we can reduce or eliminate these problems.
Exercise 3: Move your eyes as far upward as you can. Take one breath in and out slowly. Move your eyes as far downward as you can, count one breath. Repeat this 4 times.
Exercise 4: Move your eyes as far to the right as you can, count one breath. Move your eyes as far to the left as you can, count one breath. Repeat 4 times. Remember to close your eyes and rest after each set of 4 repetitions.
Exercise 5: Move your eyes as far up and to the right as you can, find a point in your vision to focus on, count one breath. Do the same thing in the far left bottom point in your field of vision. Repeat 4 times.
Now do the same thing in reverse, top left and bottom right, 4 times. Don’t forget to blink and relax your eyes if they become too strained.
Exercise 6: Now we’re going to practice eye-circling. This is easy, we’re going to start by moving our as far upward as we can, and then moving them counter-clockwise. Do this slowly and make a full circle of your vision. Repeat in the opposite direction.
Palming: This exercise is crucial to relaxing the eyes after we have completed our exercises. It has a very calming effect and relaxes the nervous system.
Sit up straight, back erect, focus on your breathing. Now take your hands and rub them vigorously together for 15 to 20 seconds. Put your palms over your eyes, facing you, fingers interlaced. Remember to breathe deeply. When we do the palming exercise we relax the eyes and send a current of electricity through them, stimulating the nervous and circulatory system, releasing tension and improving our eyes performance.
Reference
Sunday, March 12, 2017
Friday, March 10, 2017
Mental health during recovery
After my brother returned home, I felt myself having moved from recovery from the operation (backward looking) into a phase where I had to overcome some side effects before getting on with normal life (forward looking). That transition felt great and I want to thank him for that.
Reflecting on this I realized that my approach was similar as Jelmer. I had never never accepted that this would be the end of my life. I always planned ahead and made sure the treatment plans provided for a way out, a cure. This had kept my spirits high.
Pushing the limits also brings doubt if I should rest more, or move around more. I encountered double vision and noise in my right ear, so I asked the surgeon for advice. He immediately asked to come down to the clinic where he checked my left eye. He was worried about paralysis or effect of a remaining tumor.
He said all was normal with the eye, and cleaned my sinuses and nose. Scabs were removed, and breathing improved. My eyesight returned to normal after a few hours as the pressure from the upper sinus was removed but the next morning double vision was back as before.
The surgeon stressed the need to continue moving around, visit the physio to regain full movement of the neck and spray the nose every hour to keep it moist. This confirmed my gut-feel to keep pushing the limits while closely listening to my body.
Recovery from this drastic cleaning operation is different from the polyp removal operation. Mentally it's easy to doubt your gut-feel as so much has been done inside while removing the tumor.
Confidence in your body is easily lost. For example loosing sensation in nose, cheek, lip and gums because the nerves were cut is a shocking experience. Slowly the body heals itself.
I learned an important lesson to trust and listen to your body. Feed your body healthy food, rest enough and keep pushing the limits to return to normal life as soon as possible. This is what prevents depression and doom-scenario thinking.
I never give up hope that I will be cured. It's inevitable. It's His plan for me.
Reflecting on this I realized that my approach was similar as Jelmer. I had never never accepted that this would be the end of my life. I always planned ahead and made sure the treatment plans provided for a way out, a cure. This had kept my spirits high.
Pushing the limits also brings doubt if I should rest more, or move around more. I encountered double vision and noise in my right ear, so I asked the surgeon for advice. He immediately asked to come down to the clinic where he checked my left eye. He was worried about paralysis or effect of a remaining tumor.
He said all was normal with the eye, and cleaned my sinuses and nose. Scabs were removed, and breathing improved. My eyesight returned to normal after a few hours as the pressure from the upper sinus was removed but the next morning double vision was back as before.
The surgeon stressed the need to continue moving around, visit the physio to regain full movement of the neck and spray the nose every hour to keep it moist. This confirmed my gut-feel to keep pushing the limits while closely listening to my body.
Recovery from this drastic cleaning operation is different from the polyp removal operation. Mentally it's easy to doubt your gut-feel as so much has been done inside while removing the tumor.
Confidence in your body is easily lost. For example loosing sensation in nose, cheek, lip and gums because the nerves were cut is a shocking experience. Slowly the body heals itself.
I learned an important lesson to trust and listen to your body. Feed your body healthy food, rest enough and keep pushing the limits to return to normal life as soon as possible. This is what prevents depression and doom-scenario thinking.
I never give up hope that I will be cured. It's inevitable. It's His plan for me.
Healing effect of a family visit
Before the operation my brother Jelmer said he wanted to visit me in Singapore. I had learned from the previous operation that I needed at least 2 weeks to get my energy level to the point where I felt like meeting people. So we agreed along those lines and the visit became part of my healing process, both mentally and body.
Having Jelmer around had an impact in many ways.
First of all, we talked about everything that had happened to me and how I had experienced it. There were no big surprises for him because of what I written in the blog and WhatsApp group with my close family.
We also talked how he and the others had dealt with the news and the information overflow. We realized that Jelmer's had coped with it by not accepting the worst case scenario and that the others had a much more gloomy outlook.
We went for a walk to Fort Canning hill, which is quite a climb. It felt good as I didn't need to worry about my spells of dizziness. So I pushed myself to test the limits. Unfortunately, my neck problems returned due to sudden movements in taxi and bus.
I went for a checkup and x-rays were taken of my neck. The alignment of vertebrae was bad like 5 years earlier in India where I spondylosis of C5-C6. The nerves between those vertebrae had been pinched again, causing neck muscles to spasm. I visited the physio a few times to loosen the muscles and correct my posture.
Having Jelmer around had an impact in many ways.
First of all, we talked about everything that had happened to me and how I had experienced it. There were no big surprises for him because of what I written in the blog and WhatsApp group with my close family.
We also talked how he and the others had dealt with the news and the information overflow. We realized that Jelmer's had coped with it by not accepting the worst case scenario and that the others had a much more gloomy outlook.
We went for a walk to Fort Canning hill, which is quite a climb. It felt good as I didn't need to worry about my spells of dizziness. So I pushed myself to test the limits. Unfortunately, my neck problems returned due to sudden movements in taxi and bus.
I went for a checkup and x-rays were taken of my neck. The alignment of vertebrae was bad like 5 years earlier in India where I spondylosis of C5-C6. The nerves between those vertebrae had been pinched again, causing neck muscles to spasm. I visited the physio a few times to loosen the muscles and correct my posture.
Tuesday, March 07, 2017
Change of colour
The cleaning of the sinuses was done by scraping off mucus and testing it for melanoma immediately, and to continue scraping until the test result was OK.
In many places the surgeon had to scrape the bone clean and this damaged various nerves beside severe bleeding. Also he had to clean the mucus around the eye which was luckily not affected so it was saved. The tumour had affected the cerebral membrane and while scraping the affected mucus, the membrane was punctured and a brain surgeon was called in to mitigate the risk of brain damage. My wife and to rush to the hospital and sign papers before he could attend to me.
After the operation, the colour of the secretion from the nose was dark brown. The surgeon said that was old blood so he was not concerned. He and the brain surgeon were worried about leakage of fluid around the brain, which is transparent. I was instructed not to sneeze, not to clear my throat or blow my nose, nor hold my head lower than my heart. Every 4 hours several ml of fluid was tapped off from my spine to keep the pressure low for the puncture to heal.
After a week, the colour of the secretion changed into orange and one week later it turned yellow. As I could not feel the left side of my nose, nor my left upper lip, I only noticed that something was running out of my nose once it reached my mouth.
I still lack sensation in my nose, cheek and upper lip including gums of the upper left jaw. The surgeon was not clear about recovery of sensation, but I hope in time it will come back.
In many places the surgeon had to scrape the bone clean and this damaged various nerves beside severe bleeding. Also he had to clean the mucus around the eye which was luckily not affected so it was saved. The tumour had affected the cerebral membrane and while scraping the affected mucus, the membrane was punctured and a brain surgeon was called in to mitigate the risk of brain damage. My wife and to rush to the hospital and sign papers before he could attend to me.
After the operation, the colour of the secretion from the nose was dark brown. The surgeon said that was old blood so he was not concerned. He and the brain surgeon were worried about leakage of fluid around the brain, which is transparent. I was instructed not to sneeze, not to clear my throat or blow my nose, nor hold my head lower than my heart. Every 4 hours several ml of fluid was tapped off from my spine to keep the pressure low for the puncture to heal.
After a week, the colour of the secretion changed into orange and one week later it turned yellow. As I could not feel the left side of my nose, nor my left upper lip, I only noticed that something was running out of my nose once it reached my mouth.
I still lack sensation in my nose, cheek and upper lip including gums of the upper left jaw. The surgeon was not clear about recovery of sensation, but I hope in time it will come back.
Choice of location for the clean-up surgery
When my wife visited the National Cancer Center in Chiba for a second opinion, she was very pleased with the well organised method of cooperation of specialists as a team.
Our experience in Singapore was that we had to get ourselves educated quickly in order to be able to ask the right questions to reach the best conclusion.
In Japan, the specialist were all gathering and openly discussed the options with my wife. They concluded that the cleanup operation was not possible due to size of the tumour.
The proton beaming would be possible once the tumour had reduced in size by medicines.
The new immunotherapy drugs from the US were judged 'killer medicines' but the top oncologist present. He stated that the publications were not giving a true picture of the effectiveness of the new drugs as they were administered in conjunction with surgery. The effect of the surgery would have influenced the outcome, and he also questioned if all non-successful cases were included in the results.
So we were left with no choice then to proceed with the clean-up operation in Singapore and hope for the best. The proton beaming could then follow in Japan after 4 weeks of healing to minimise inflammation which had proven to make it impossible to discern malignant melanoma from inflamed tissue in the PET/CT scans.
Our experience in Singapore was that we had to get ourselves educated quickly in order to be able to ask the right questions to reach the best conclusion.
In Japan, the specialist were all gathering and openly discussed the options with my wife. They concluded that the cleanup operation was not possible due to size of the tumour.
The proton beaming would be possible once the tumour had reduced in size by medicines.
The new immunotherapy drugs from the US were judged 'killer medicines' but the top oncologist present. He stated that the publications were not giving a true picture of the effectiveness of the new drugs as they were administered in conjunction with surgery. The effect of the surgery would have influenced the outcome, and he also questioned if all non-successful cases were included in the results.
So we were left with no choice then to proceed with the clean-up operation in Singapore and hope for the best. The proton beaming could then follow in Japan after 4 weeks of healing to minimise inflammation which had proven to make it impossible to discern malignant melanoma from inflamed tissue in the PET/CT scans.
Recovery Blues
The first days recovery were difficult. My body had not moved much in the hospital bed for 5 days due to the spinal fluid tap. This caused muscles in my neck and shoulders to spasm resulting in headaches and impossible for me to sit up. Anything in a sitting position had to be avoided.
So I went to see a physiotherapist, but the taxi ride was a hell. Immediately after being treated, the sitting in the car threw me back to pre-treatment status, so frustrating. So the next day I walked, which was good exercise but left me exhausted, not exactly what the surgeon had advised me.
The second major trouble was lack of sleep due to throbbing pain in the nose. It had been fractured to reach the upper sinus, and the pressure of thick fluid coming down to be drained were forced through the healing bridge of the nose. Painkillers (panadol) were not sufficient to make me fall asleep. After getting agreement from the anesthetist, I returned to the painkiller of the previous operation. He responded on Sunday morning within a couple of hours. Such a reliable and great guy.
After stretching regularly and sleeping perhaps too much in daytime, I had enough courage to go for a massage on day 5. This turned things around. All knots in my back were addressed and I could start enjoying the time at home. With the pain coming down and 5 hours sleep I suddenly felt things had turned around. I worded this feeling to my son as follows:
"I feel i am healthy again deep within. Its great to feel this confidently. I have thanked my Father for this. He worked with the surgeon, provided the tools, gave me a strong spirit, a smile on the face again to make you guys feel happy. Its done. From now its following the path we prepared. Great! And I love you for helping me get through this. Together we are strong!"
So I went to see a physiotherapist, but the taxi ride was a hell. Immediately after being treated, the sitting in the car threw me back to pre-treatment status, so frustrating. So the next day I walked, which was good exercise but left me exhausted, not exactly what the surgeon had advised me.
The second major trouble was lack of sleep due to throbbing pain in the nose. It had been fractured to reach the upper sinus, and the pressure of thick fluid coming down to be drained were forced through the healing bridge of the nose. Painkillers (panadol) were not sufficient to make me fall asleep. After getting agreement from the anesthetist, I returned to the painkiller of the previous operation. He responded on Sunday morning within a couple of hours. Such a reliable and great guy.
After stretching regularly and sleeping perhaps too much in daytime, I had enough courage to go for a massage on day 5. This turned things around. All knots in my back were addressed and I could start enjoying the time at home. With the pain coming down and 5 hours sleep I suddenly felt things had turned around. I worded this feeling to my son as follows:
"I feel i am healthy again deep within. Its great to feel this confidently. I have thanked my Father for this. He worked with the surgeon, provided the tools, gave me a strong spirit, a smile on the face again to make you guys feel happy. Its done. From now its following the path we prepared. Great! And I love you for helping me get through this. Together we are strong!"
Wednesday, February 22, 2017
Coming home
The first things you cherish once back home are sooooo many.
Washing your hair properly while taking a hot shower is close to the top.
Being discharged gives a sense of progress hard to find so clearly elsewhere.
Planning treatments now gives way for a period of rest. Recover, reconsider, remember and forget.
Even a positive and powerful spirit I have found myself to be needs to be realistic this journey has just begun. It's a new journey which one could give names related to what started it all.
Going through so much in such a short time, sharing it all with friends and family.... I am grateful for being loved for who I am and love unconditionally. Thank you all for your support. I love you.
Especially I love my wife who pulled me through and planned everything. I love you. There are no other words to express what I feel.
It's all destined to be. The specialists, the available technology, the connectivity, the Hand of God in all this, and most of all, the grace of how it is all orchestrated by Him, and brought to the best possible end imaginable. How blessed we are.
So I rest to begin a new day refreshed, and refresh my love of life. Rest to plan schooling for my daughter, starting a new life in Tokyo, have a relook at how I approach the challenges at work.
And yes, I rest until the next scan and following treatment.
But that's just part of life....
Enjoy the ride!
Washing your hair properly while taking a hot shower is close to the top.
Being discharged gives a sense of progress hard to find so clearly elsewhere.
Planning treatments now gives way for a period of rest. Recover, reconsider, remember and forget.
Even a positive and powerful spirit I have found myself to be needs to be realistic this journey has just begun. It's a new journey which one could give names related to what started it all.
Going through so much in such a short time, sharing it all with friends and family.... I am grateful for being loved for who I am and love unconditionally. Thank you all for your support. I love you.
Especially I love my wife who pulled me through and planned everything. I love you. There are no other words to express what I feel.
It's all destined to be. The specialists, the available technology, the connectivity, the Hand of God in all this, and most of all, the grace of how it is all orchestrated by Him, and brought to the best possible end imaginable. How blessed we are.
So I rest to begin a new day refreshed, and refresh my love of life. Rest to plan schooling for my daughter, starting a new life in Tokyo, have a relook at how I approach the challenges at work.
And yes, I rest until the next scan and following treatment.
But that's just part of life....
Enjoy the ride!
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