wait and weight

The helper went on a three-week paid home leave sometime in April. Last year, I asked her if she wanted to continue working in this household. She waited till end of the year, as in the last day of Dec, to tell me her decision. She asked for a longer leave, but I had my constraints. Not knowing how my condition would be, I agreed to give her three weeks off, instead of the usual two. Thankfully my condition stabilized, some sort.


The problem then became who to take care of me during her absence. My mum was the first person that came to mind. Joyce suggested a live-in nanny, somebody like a confinement nanny. I tried but couldn't get a nanny. When I approached my mum, fate had it that my aunt was also returning from New York City during the same three-week period. My mum had promised to accompany my aunt during her stay here and even resigned from her work at my aunt's suggestion. I wondered who was in greater need of my mum here. Despite offering to give twice of what my aunt was going to give, my mum insisted on keeping her promise to my aunt but agreed to come over on days when she was free. Okay... no choice. We both know how my aunt is like. I had offers from friends who would keep me company on days when my mum couldn't make it. Anyway, I wasn't stressed by this. Somehow I knew my mum would help. Then came the Iceland volcano eruption. Aunt's flight was canceled. Hahaha! Wasn't it divine intervention?

During the three weeks, I gained half a kilogram from mum's cooking and loving care. I simply love her mee-sua! Yummy! I was eating small light meal every three hours. Mum wouldn't take "no" for an answer. That's the difference between mother and helper. The helper cannot force me to eat if I refuse. It's a different story with mother. She will even spoon feed me!

On the week of the helper's return, I went to see my doctor. I was prescribed antibiotic for a suspected infection. Bad move. Like the previous antibiotic, I was puking big time on the third dose. I couldn't eat for almost three days. I lost all that I had gained during the three weeks, and probably more. Sad. During the next one week or so, mum made sure I was eating well again to put on whatever I had lost. Mum is the greatest!

I am now home bound. No more breakfast outing, marketing and grocery shopping, and even going to church. I don't have the energy level for simple outing like these. The pain sometimes comes unexpectedly and I don't want to be caught when outside. These days I spend less than two hours on the internet. I kinda enjoy being quiet and by myself. Peace.

Updates

Sorry for the lack of updates.

I have been going for various appointments with different doctors for the past two months. Seeing how much weight I lost and unwell I had been, Dr See initially proposed putting in a central line. From there I could be fed intravenously (total parenteral nutrition) and if possible, chemo drugs. However, she later sent me a text message to say perhaps no chemo is better for me. She would rather work on preserving my quality of life. She told me to try Appelin, a multi-vitamins with lysine to help increase my appetite.

I had a post-surgery follow-up with Dr Tang. He jokingly said his job was over and I need not see him anymore. So, that's one less appointment to go.

Saw my liver specialist last month. I hadn't seen her for at least six months. She warmly shook my hands and said she was thinking of me few days before my appointment. She arranged for me to see a dietitian. I was reluctant as I felt the one at NCC would better serve my needs. However, I couldn't refuse her kind suggestion.

Appelin is able to put back some appetite and at least I want to eat. According to the dietitian, I am not chalking up enough calories, which was what Dr See told me before. However, what I am having now is my maximum intake. My capacity to eat probably shrank after a prolonged period of small intake. He also noticed my lack of variety, which I explained was due to my colonstomy. I think he isn't sure what specific food I should avoid and I was asked to clarify with Dr Tang. Sighs. And as Dr See said, she would rather I see the dietitian at NCC.

I had a few episodes of intense pain. Although I am on maximum dosage for Tramador, I still have this intense pain which makes me lose my zeal to live. The pain management doctor, Dr Tan, prescribed liquid morphine when Tramador fails to alleviate the pain. I think he sensed my need for someone to understand my plight and to counsel me, he tied me up with Dr Yee, the palliative doctor at NCC. During my visit last week, I suggested not seeing him anymore and just see Dr Yee. It makes more sense. Anyway, Shuai Ge sees him in church and he is available if we need help on pain management.

The session with Dr Yee was an emotional one. I was asked to share my fears, worries, doubts... or whatever I'm comfortable with sharing, so that she knows how to help me. I'm thankful and grateful to Dr Tan for arranging this appointment. We have long wanted to see a palliative doctor at NCC.

I am also on an open date with Dr Yeo. Even he noticed I'm seeing so many doctors. He suggested an external beam radiation to give me some relief. We are unsure though, how long and how much that relief can be, if there is relief. I discussed this option with Dr See. On a side effects vs benefits scale, it is better not to proceed. Personally, I don't want it too.

With so many appointments to go, I'm thankful and blessed to have this group of supporters. My church friends, ST and SS would normally drive me to and fro hospital/clinic. If they were not available, either LX or LZ or both would bring me there. Then at the hospital/clinic, YW would be ready with a wheelchair so that I didn't have to walk. So nice, right? I felt bad sometimes to trouble them.

How have I been? Not any better. I still weigh 33+ kg, which makes me look like a malnutrition old lady. When my pain level hits a high and is unbearable, I become emotional easily, lose my will to live and cry buckets. The emotional low can last as long as two days or as short as half an hour. I cannot sit for too long, and sometimes lying down on the bed gives me backache. Going forward, I don't think I can get any better. LX and my BSF leader encouraged me not to lose hope, but to keep praying. It is really not easy fighting on with a battered body. Still, I need to persevere and look up to God for that much needed peace and strength, till He calls me home.

pain management

I had a bad case of intestine-twisting kind of pain two weeks ago. Dr Yeo decided to help me apply for hospice care to help me manage my pain.

The hospice care team visited me last week and taught me how to manage my pain. I also sought help from the Pain Management Centre at SGH. Well, I'm now taking painkillers regularly to ease the pain. The side effect is dizziness. I have to lie on the bed and be careful not to fall and hurt myself.

it's good to be home

Yes, I'm back home from the hospital stay today. Joyce and Fiona were really sweet to arrange a lunch on Friday before my surgery on Tuesday. I was able to satisfy my craving for "char kway teow".. we had the Penang version near Coronation Plaza.

Musketeer bp was laughing so hard at the hospital tales which I told him that he said my week was more exciting than his. Well, the surgery was a success. Only thing was that the tumours have to stay. Boohoo.

I have to get used to having this new *ahem* "branded bag" and a new lifestyle.

short update

Upon Dr See's suggestion, brought forward my appointment with Dr Tang. As the disease has progressed and the tumours have grown, Dr Tang felt it is in my interest to have that stoma surgery. It should provide some relief for me.

Surgery is on Wednesday, expected stay in hospital is 5-8 days. I would prefer no visitation.

doctor's review

I don't know how to begin this entry. Went for my appointment with Dr See this morning. Was rather shocked I lost so much weight. Dr See commented that I looked pale and weak. I think I have not been feeling well the last ten days or so. Poor appetite, pain, lethargy, bleeding, nausea and discomfort are my daily companions. I lie down on the bed most of the time.

Dr See suggested a CT scan to see what is happening inside me, and to address the weight loss and bowel issues. An optimistic case scenario is a stoma surgery, worst case being nothing can be done. I don't know how to react to this, just feel so tired and in pain. I seriously don't know how much longer I can bear all these.

Was rather touched when I received an email from my young friends this evening. It was a slideshow put together as a present for me. I was tearing as I watched the slideshow and the messages each of them wrote to me. I may not have my health, but I'm certainly surrounded by many friends and love.

what's happening and the future

I finished my radiotherapy early last month. Compared to chemotherapy, it was a much more pleasant experience. My church friends came to support me on my first treatment. They took turns to bring me for subsequent sessions as I didn't want to disrupt "Shuai Ge" from work too often. Although I bled shortly after my 4th one, I was able to complete the whole treatment.

There are two reasons for the lack of posts here. One is laziness. The other is I cannot sit too long typing on the desktop. Alright, that sounds like an excuse, but it really isn't. My bowels are somewhat blocked by the tumours. Whenever I sit at the desktop, I get this urge to visit the toilet. I'm now typing this entry on the tablet computer "Shuai Ge" puts in the room.

I have been off chemotherapy since the ixempra issue. There are no more new chemo drugs for me to try. Anyway, my body didn't quite recover since August. I lost so much weight (and body fats) that I look like someone who is anorexic. I am now trying to put on weight, which is an uphill task. There are diet constraints, considering my blocked bowels. Dr See listed out some of the food to eat and what to avoid. Ling returned from Melbourne for a short visit and gave me additional pointers too. It is rather sad that I have to avoid many of my favourite food. The only one I find most pleasing to indulge in is ice cream (must be made from full-cream milk and not low fat and the like). What is life when you cannot enjoy your favourite food and eat what you like?

My Chinese physician, Zhang yishi prescribed TCM to regenerate my body. I am able to resume some of my usual activities: breakfast and marketing on Tuesday and Thursday, BSF on Monday and church service on Sunday. However, I don't have enough stamina like before to walk long distances and my stomach sometimes will act up. It is also rather troublesome to go out as I'm always looking for the ladies' room. It's still good to be outside occasionally, sipping tea and drinking soup with really great friends.

At one stage I lost interest in surfing the internet, except the few friends' blogs. It hasn't been the same since Flora's passing on. Sometimes in the night when I woke up, I had panic attacks and would often wonder if it was my turn to go home. I shared with "Shuai Ge" my fears. "Shuai Ge" being himself, reminded me of the things I needed to do, so that I would have no regrets. I would like to share my thoughts, but not in this entry.

So, what's happening now? It's waiting. Waiting for new chemo drugs to come onstream. Waiting for my body to give distress signals or recovery signs. Meanwhile, I will eat to gain weight. Take my medication regularly and hope that my nerves will recover and the numbness on hands and feet will disappear. Pray that TCM will work its wonders and my body will rejuvenate itself. Pray that my bowels will not be totally blocked and I don't need that surgery. And I will get my hands going to do what I'm supposed to do so that I won't have any regrets.

Future? Dare not think too far. It's good enough to be able to plan a short retreat with church friends this coming weekend.