Tuesday, July 3, 2012

Sharing Is Therapeutic

I was feeling slightly better when I went for my Vitamin C therapy this morning. There I met two other patients whom we have become friends. We were all happy to see each other and sharing our journey and also of the therapies we are taking. It really makes me feel good when I see other cancer patients are responding to treatment. Last Saturday, I received a call from my doctor and he asked whether I could spare some painkillers for one of his patient who will be running out of the painkillers by Sunday. For some logistics reasons, my doctor could not get the supply on time and today I found out that the reason was that the drug company did not give priority to such small orders.  I gladly told my doctor I would be pleased to spare his patient some of my painkillers which I just bought a few days ago. What I don't understand is that the drug company knows how painful a cancer patient will be without the painkillers but it showed no compassion. It's just business. The lesson for patients is to keep more stocks.

My constipation is under control now and I attribute that to the lowering of the painkiller's dosage. At the lower dosage, I still feel a little painful but at least my daily routine can move on. The nausea and vomiting feeling are still there and I find it frustrating that even drinking water triggers the vomiting. And I need to drink a lot more water! In early June, after receiving my blood test results, I suspected that I was bleeding after I discovered very yellowish/brownish urine. I stopped taking cyclophosphamide to begin the drug elimination process. My urine analysis results last week showed that there were no traced of blood in urine and later, I attributed the yellowish/brownish urine to the oxycodone drug. This was compounded by the fact that I wasn't drinking enough water. So I though what is the best way (other than through IV which my doctor suggested) to increase my water intake without triggering the vomiting? I found a simple temporary solution. I just mixed 400ml of isotonic drink with 600ml of water. That did the trick. I did tried to lace the water with lemon but it did not work. It did work with cranberry juice but leaves a strong bitter aftertaste. For long term use, cranberry juices would be a better choice. With this water problem solved, I will restart taking cyclophosphamide, a drug which also requires me to drink a lots of water. I will also monitor any signs of bleeding. Since I stopped taking cyclophosphamide, I noticed the pain on my right leg is coming back, particularly when I get up from my seat.

One other problem still outstanding is edema. At first it was confined to my legs but now, its at my stomach as well. My stomach is bloated and after being examined by my doctors, it is basically water. The University Hospital doctors told me that for people with abdominal problems and/or kidney disease, edema is common and suggested that I rest my legs on two pillows when I lie down to sleep. This should help to eliminate the water and it did. However, it would not move the water from my stomach. My blood test showed that my albumin is at normal levels. The next option is to try diuretic medications. I just want to ease my situation quickly. For longer term, I would prefer to take TCM herbs which are known to be quite effective for edema. Keeping my fingers crossed.


  1. Chang,
    Forget about dying in peace. We still have a date in Chiangmai during Loy Krathong. So many things to see there.

    So hang on. I will sponsor the trip.


    1. Dear CA,

      Thanks for your invitation and offer.

      These days, my health condition are rather unpredictable. What seems a sunny stretch can suddenly turn into storm clouds full of thunder and hurricane!

      Even for my holiday trip to China next month, I am bringing a wheelchair along.

      Anyway, I hope that my condition will not deteriorate and look forward to the trip to Chiangmai.

    2. Can I tag along? To Chiangmai, I mean.


  2. Hi CT-

    Let me tell you how amazed I am by your strength and acceptance of your current condition. *Salute*

    My sister is currently paralyzed nipple line down due to spinal cord mets (primary is breast). Since then she has hit rock bottom many times. I noticed when she's in pain, her mental and emotional state is really bad. Thank God we have help from Charis Hospice in Penang who found the right medication to manage her pain.

    One problem is, she kept wanting to walk again in a few months. It's fine, I'd also want her to be able to walk again. The problem is, it's not realistic to be able to walk in a few months. If I have to be optimistic, I would say at least 2 years.

    She is not you. She doesn't want to learn about the disease nor is she keen on keeping herself occupy. I think staying at home day in day out is taking its toll on her. She needs to be lifted from bed to wheelchair and vice versa; meaning she no longer can do the simplest task on her own.

    When she's down, she threathen us to send her to hospice.

    As a caregiver, I want to provide everything for her to be comfortable so she could heal in a conducive environment. However, I feel that the only person stopping her recovery is herself of late, because of her refusal to pick up new skills, her lack of acceptance and knowledge, and her frustration from not being able to walk.

    What else can I do for her?

    1. I would suggest that you find a cancer support group near you and get your sister to attend one of their gatherings.

      According to a book I read, losing one's mobility is like losing one's independence. It makes the patient feel useless and need to depend on people for their basic needs. If possible, I would suggest that you engage a psychotherapist or hypnotherapist to help her out. Talking to other positive cancer patients would also help.

      Tell your sister, there are two states she can be in. A miserable state which not only make her feel miserable but also all people who loves her also feel miserable as well. The alternative is to be happy and live life as best as can be. It's all in the mind and the choice is up to her.

  3. Thank u for sharing ur life's journey with all. What a remarkable task undertaken. I am sure that u have directed, encouraged, enlightened, and helped save lives. ur documentary includes a plethora of therapies available and ur life experience shared through each is priceless. Many of us did not know of all the options available throughout the world. Thank u for that gift! May u be blessed with peace, comfort wisdom, miracles and may greatness shine upon u and ur family.

  4. Hi CT-

    Thank you for your advisement. I looked into counseling for both the patient and the caregiver (myself). I also recently found out that mental therapy should be part of cancer treatment.
    Know that you have helped myself and others in finding treatment for cancer. Apart from the main fight with cancer, we also need to deal with its side effect like nausea and bloating. You have provided such great help to others.
    God bless you CT! We are all here for a reason and you're here to help others and provide such great inspiration for other survivors.