27 Dec Fell Sick And Fighting To Be Well
I have fallen sick over the last 5 months. I am fighting and intend to win this battle. During this period, I thought about many different aspects of life and would like to write down my thoughts.
“Pain is weakness leaving the body”
but what if it doesn’t leave?
The pain was intense, I rate it 9 out of a scale of 10. It lasted for about 8 hours every day. The only way to temporarily relieve the pain was to take a hot bath. I was literally living my entire day soaking in the bath tub. It was difficult to focus on anything when the pain was there. I couldn’t even read leisurely. I couldn’t sit, stand nor walk. The only position was to lie down. It was hard to perform daily activities like eating and drinking. I lost about 13 kg within the first 2 weeks.
It was mentally exhausting. Every day when the pain subsided, it would be almost bed time. The whole day would be wasted. When I woke up in the morning I would have to face the fact that pain was coming again. There were some days when pain came in the night too! As it wears my mind out, I would break down and cry. I would also feel guilty and sad for not being able to play with my toddler and to burden my superwoman wife.
The illness came at a time when I had almost finished my post-grad and I’m grateful it didn’t hit me earlier. Wife planned a few summer holidays including Croatia and Prague. I had plans to work on a startup and to talk to technologists in Cambridge at least until the end of the year. I was very excited and all ready to go! Suddenly the illness hit and everything came to a stop. This affected me a lot. It was hard for me to accept that I’m spending my days not working on my dreams. Eventually I came to accept that I needed to work on my healing before I can work on my dreams
Super grateful for the little things that we have taken for granted. On better days I could manage to stroll for 10mins. I remembered the first time I went down for a stroll in the neighbourhood (beautiful Cambridge), I was so super grateful that I can walk. I had never felt such joy to be able to do such a simple thing in my life. I felt grateful to be breathing and to enjoy the scenery in the neighbourhood.
I went to the GP 5 times and got admitted to A&E 2 times in total. I was misdiagnosed. I had only been visually examined. No blood tests done, no scans of any sorts. I always mentioned the fact that I would faint and felt dizzy but no one even bothered to take my blood pressure. I reported that I had fever every night and they always tell me it’s normal. I am a diligent patient. I kept a document of my symptoms and tabulated data such as my pain scores and various other data points in a word document 11 pages long. My idea was to play my part and provide the doctors with the most comprehensive data points to help them help me. We now know that the misdiagnosis and delayed treatment contributed to the increased complexity and severity of my condition. My current surgeon is of the opinion we should bring the case to NHS for arbitration.
I got so weak I couldn’t really open both eyes. We decided to make an emergency flight back to Singapore. As I needed to lie down flat on the 14 hours flight, I reluctantly agreed to travel first class home though I felt that was really expensive!
Support from friends and family. Friends and family support was so important and it’s very touching too. We had a friend fly into Cambridge from Shanghai for 2 weeks to help settle the house after we left. While I was sick in Cambridge, the neighbours all chipped in to help. Needless to say, family was supportive when we came back to Singapore.
Once I touched down, I saw the Singapore surgeon whom I had been in touch with while in Cambridge. I had my first surgery immediately. 3 weeks later there was a recurrence and I had the second surgery. I was on the negative pressure wound management machine which was attached to my big open wound all the time. I remembered the first time the machine was detached from me after 5 weeks, I felt something was missing (the machine). It’s amazing how humans get used to things.
Although the second surgery failed, I felt much better since taking TCM herbs. We spoke to 3 of the top surgeons here over 3 weeks of due diligence. We also considered doctors and alternative treatments in Malaysia, China and India. Eventually we decided on a Singapore surgeon and I would be going for my third surgery tomorrow.
Life priorities. For the many weeks that I was bed-ridden and suffering in intense pain, I would extrapolate and imagined if this was the end of our ‘normal’ life, what I would be thinking of. In illness and pain I can’t think of anything else except to regain my health, suffer less pain and of support from family and friends.
Health. As I was in pain I naturally thought of health as my top priority. Health as our top priority makes a lot of sense. Death ends suffering but poor health conditions make living a suffering. It is an absolute nightmare to suffer from poor health even though we can continue living for a long time. I will not compromise health in future. This is also a responsibility to the family. I can only take proper care of my family when I take care of my own health.
Relationships. I have read that at deathbed, the only thoughts left are of relationships and memories/regrets with loved ones. I felt it myself. I think a lot of my loved ones, family and friends. Spend quality time with loved ones and make nurturing relationships a priority in future.
Be mindful that we might really be living our last day today. Do not take things for granted. My illness came very suddenly. It’s quite random and can affect anyone. We can really be the unlucky one and get into an accident, catch an infection or meet a disaster. I have never thought that something so unlucky could happen to me. The truth is life is indeed unpredictable. Cherish each day that we are well and alive. Count the daily blessings and be mindful of each day!
Faith. I believed in God but does not subscribe to a particular religious belief. Through this episode I came to appreciate the importance of faith more deeply. I have always felt in control and that I can overcome any challenges. This time around I felt very helpless. It got to a point where there isn’t anything I can do that can help myself heal. The doctors find it challenging too. With a weak body and mind after months of intense daily pain and failed healings, the only thing that kept me going was faith. Prayers from friends helped tremendously too.
Something interesting happened one night when I was lying in bed. I am not a Christian. I was awake. I wasn’t dreaming. I saw/felt something lift me high up into the sky. Somehow in my mind, I know it’s the holy spirit lifting me up. At the top I saw someone. I recognised him as Jesus. He didn’t look at me. He looked out into the horizon. I asked him: “Can you heal me?” He didn’t say anything but at this point I was dropped from the sky. I drifted down like a feather. I turned into a baby and a big piece of white cloth wrapped me gently as I drifted down.
I wasn’t dreaming. I remembered I picked up my phone and watched some youtube videos next.
Doing good. I felt that if this was really the end of my life, I regretted not doing enough good for the society. I regretted not contributing to this world. I want to do more for society and contribute to make the world a little better. This would influence my career choice in future.
Never delay treatment. I recognised the importance of prevention and prompt treatment of the small symptoms. Early treatment is always better.
Lead a healthy lifestyle. We cannot control the random nature of life. We can shift the odds in our favour. Prioritise a healthy lifestyle. Eat well, sleep well, move more and meditate.
(updates on 30 March 2018)
I’ve seen 7 doctors in Cambridge. I had my first 2 surgeries in Singapore done by surgeon A. After both surgeries failed, surgeon A had no more tricks up his sleeves and referred me to his mentor Surgeon X. Surgeon X told me: “No surgeons would want to be involved in a case like yours”. I went to surgeon Y. Surgeon Y was relatively confident but 2 sentences left me feeling a little uncomfortable: “I much rather see a cancer patient than you” and “historically many great surgeons lost their reputations in this type of surgeries.” I went to surgeon Z. He seemed genuinely confident while acknowledging that it’s complex and he cannot promise anything. We also did some due diligence with Malaysia, China and India’s doctors as they have lots of experiences in such cases. In the end, we decided to proceed with surgeon Z from Singapore. He is Dr Charles Tsang from Mount Elizabeth Novena.
How complex is my case? The occurrence rate for a simple presentation of my condition is about 1 in 100000, mostly healthy young males. Scientifically, underlying causes are not known with certainty. As with any conditions, there are variations to it. Let’s just say I have variations A,B,C and D combined. These variations occur without any known causes. It’s almost random so I say it’s just luck. According to surgeon A, the occurrence rates of variation A is about 2% of all patients and I have it. Then if someone is very unlucky, there’s also variation B. I have it too. If someone is really unlucky, there’s variation C and D. I have them all. The doctors say I’m the rare ‘lucky’ ones who have them all. By luck, the presentation of my condition is complex therefore harder to solve. The misdiagnosis and delayed treatment in Cambridge likely caused some of the complexity.
I had prepared myself mentally that post surgery 3, I would need long periods of bed rest. I was also prepared for a big open painful wound that is typical for such a type of surgery. To my surprise, I was walking around on the second day post surgery. I was amazed at Dr Charles’ skills.
With surgery 3, the idea was to allow the tissue around the infected area to settle down to prepare for surgery 4 in two month’s time. I knew I had a 2 month window to catch up on life and work and I did just that. I managed to get some work done. I also spent effort on nourishing my body in preparation for surgery 4. I wanted my body to be in the best condition possible for better recovery and better chances of success post surgery 4. Technically I was still having infection in the area but due to surgery 3, the discharge was able to leave the body daily and I felt much better compared to the first 5 months.
We decided that we would proceed for surgery 4 in mid Mar. This was a critical surgery. If it’s a success, I’m headed towards a full recovery.
It’s my fourth time undergoing general anesthesia in 6 months and I felt a sense of calm being an experienced veteran. However Dr Charles must have saw the worried look on my face regarding the actual surgery when he came over and gave some very assuring words and a gentle pat on my shoulders: “Everything has been according to plan. No surprises.” He was referring to how my body reacted to surgery 3 as planned and seemed ready for surgery 4 now. With that I was pushed into the operating theatre, transferred to the table, hooked up to the monitors and my heart beat broadcasting in the sound speaker. As usual the general anesthesia was administered via IV while I was given oxygen to breathe. It should have been about 3-4 breaths when I knocked out.
I woke up and Dr Charles had this pleased look on his face when he visited in the ward, claiming it “looked nice”, almost like he was proud of his art work. He was referring to his surgical works. I went on clear liquid diet for a week. I had my first clinic check last week and it looked fine. I’m being very careful about this recovery since it’s my critical surgery 4 and I want to give it the best chance to be the final surgery. I strictly avoid sitting and walking. I’m strict with my diet. Traditional chinese medicine had been a life saver ever since I started sometime after surgery 2. I will write a post on TCM soon. TCM has been really important to the whole recovery process. Once I ended my antibiotics on day 7 after surgery 4, I went back to my daily TCM herbs. Today is the start of week 3 after surgery 4. I do get jittery when I feel some weird sensations in the area and the mind starts asking if the surgery will fail. As usual I kick those thoughts away immediately by logically assessing that I have a good plan in terms of lifestyle and diet for the best recovery outcome. I’ve stuck to the plan and continue to stick to the plan. I do what I can control and leave what I cannot control to god.
Meanwhile I’m really looking forward to the trip back to Cambridge for graduation in May and our Prague vacation!
(updates on 7 Dec 2018)
2 weeks before our flight to London, we almost lost Sean. And naturally we didn’t make the trip. With God’s grace we are all good now! Praise the Lord.