eventful week

Well, the hospice team came and the hospice doctor managed to get hold of Dr Yee to discuss my case. Simultaneously, I found my "old lady" (aka the stoma) swelling to twice its usual size and rejuvenating to a young lady. That is to say, my stoma becomes bigger, and much smoother with no "wrinkles". Don't understand? Never mind.

The important thing is we might have found the cause of my fever: inflammation or infection of the intestines. After discussion, both doctors prescribed a course of antibiotics and would continue to monitor me.

Well, the fever stubbornly persisted till now. It would make me very sleepy. "Shuai Ge" is more worried about the persisting fever and what it might entail.

That's my update for you. Hope you have a great and enjoyable week-end!

new relief but not quite

My appointment (last Friday) with the palliative doctor saw some changes. One is the change to morphine tablets. The other is to increase dosage for nerve pills. The good doctor hopes to bring some relief to my situation and return to marketing days.

On both Sat and Sun, I was drowsy and sleepy most of the time. I also had fever out of the blue. The fever hit a high of 39.7 degree celcius. It was controlled with paracetamol. The fever became a mild grade one till today! The hospice nurse was surprised about the fever. Oh, I had diarrhea too, which was why we were concerned about these twins. After discussing with the hospice nurse and getting hold of Dr Yee, I will be put on a course of antibiotics. Anyway, the hospice nurse is coming over later.


Yes, there is lesser pain, but there are other problems too. However, I am still thankful for being able to go marketing yesterday! ^_^

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.