Wednesday, June 27, 2012

Wednesday Blues

What a tiring afternoon. I left home at about 1.30pm for University Hospital (UH). The traffic was smooth and I reached the hospital at about 2pm. Finding a parking space at UH is a nightmare but I managed to find a parking lot on the forth floor towards the Eastern end of the hospital. The car park was not equipped with lifts and so you can imaging how difficult it is for me to use the stairs case. Then I have to walk almost half a kilometer back to the main block where the Palliative Care Unit (PCU) is located. Some nurses gave me the wrong direction and by the time I reached PCU, I was almost half dead. After some administrative procedures, I met the doctor, a young but friendly doctor. I updated her on my pain management regime that was prescribed to me by Hospis Malaysia. I also told them I have been off opioid painkillers for about four days now. I am using Ultracet for pain management which gives me no constipation problem. A tablet every six hours and after taking Ultracet, pain score is about 3. For the Hospis pain management regime, my pain score after taking the opioid painkillers is 1. The Hospis pain management regime is more effective than my own. But there is a serious drawback on using opioid painkillers for me. I have constipation problems. There last three days were almost hell for me. My stomach was bloating as if waiting to explode and at the same time, I had bowel movement problems. I was also hungry but could not eat! I took a coffee enema to resolve the problem and thereafter stopped the opioid painkillers for four days, my system cleared up and I was able to have bowel movement. However, the pain scored increased to between 3 and 4, disrupting my sleep and general well being because Ultracet is not effective for moderate to severe pain. I have been on a fruits diet and most days, skipping lunch to give my stomach a rest and to recover. I also discovered I have edema on both my legs.

Anyway, the doctor at UH was later joined by another more senior doctor who told me that only opioid based painkillers are effective for cancer pain. So the main concern now is to managed my constipation. The senior doctor recommended that I continue with the Hospis pain management regime but gave me stronger doses of laxatives such as Lactulose, Forlac and Senna. So my choices are now either to take non opioid based painkillers which will not have constipation problems but suffer more pain OR take opioid based painkillers which will have constipation problems but suffer no pain. The obvious choice is the latter and manage the constipation problem with laxatives. Both the doctors were very friendly and frank. I really enjoyed talking to them for about 45 minutes. I took the opportunity to talk a little about alternative medication and also introduce my blog to them. UH is no longer cheap. Except for the consulting fee, all expensive medications are no longer supplied free by the Government and cancer medications are expensive. A weird thing I observed is that I have to buy my medications from three pharmacies namely the UH pharmacy, the privatised UH pharmacy and an external pharmacy.

I am going to start this new pain management regime tomorrow and monitor the dosage of the laxatives over the next few days to find the optimum dosage which is suitable for me. My doctor has given me an open appointment but will call me in a week's time to check on my progress.

I would like to thank you all for your support and also those who take time to comment on my blog. I would like to inform you that the pageviews of this blog has now exceeded 200,000 as of yesterday.


  1. Next time, contact me if I can give you a lift to UH. You can park your car at my shop and I drive you there.

    This period is peak for me, but I believe I can still offer you a lift to UH. Timing is important though.


    1. watch out, pain drugs can be like a slippery pole. I asked a nurse, who is not a cancer nurse, of your dosage for pain and they thought you were on a high dose of 40mg. The nurse told me, before the second last post by yourself, that there will be alot of side affects. There are and will be more side affects.

      I think because you have not had a normal doctor following your treatment, the current doctors you have seen only know how to end your life in no pain. They do not understand HIFU. They think it is just the cancer and getting you ready to die in no pain.

      all the best

      There is No God being with you. hehe.


    2. Dear Gary,

      Thanks for the transport offer. I hope I don't have to go UH so often.

    3. Dear John,

      I did try to explain to the doctors about HIFU and the dead tumor tissues inside the abdominal area. I agree with you that their main concern was just to reduce the pain.

      Anyway, I also thought 40mg is also a little too high. The Ultracet drug that I am taking is about 8mg and gives about 70% effectiveness. So what I am doing now is to take a lower dosage at 20mg instead. I will fine tune it along the way.

  2. CT,
    I don't know if what I have personally experienced with severe constipation is of any help to you, but I took a whole bottle of prune juice (which was very delicious) and within hours, it did the magic! Suffice to say prior to that, doctors had prescribed medications which did nothing to alleviate the problem but instead prolonged the agony for me. Hope this helps and please stay strong.

    1. Dear Alex,

      I heard about taking prune juices but the dosages that I took was a glass and not the whole bottle.

      Thanks for your tip. I will certainly try it next time as it is far better than taking say Loctulose and Forlac.

    2. Liposomal vitamin c

  3. CT,
    I guess the juice was just too delicious and I had to finish the whole bottle! Anyway, the volume is only about 950ml and with plenty of ice, it tastes great and goes down well. You can keep sipping it rather than gulping it all down at once and before you know it, you have finished the bottle. Again, the key here is the quantity that you consume. Too little and it doesn't do the trick. Besides, its natural and plenty of vitamins.

  4. Chang,

    It's been a while I last read yr blog, the journey is obviously getting difficult, do remember it might be the turning point, bear with it, enjoy the prune juice la,

    rgds, kokpiew

  5. U are an inspiration. :)

  6. Hi CT,

    I have been a silent reader and always read your blog. My elder sister is currently having the same painkiller-constipation problem now and i was just about to write a post about this. It's a sophie's choice isnt it? Yes, her doctor also asked her to drink two 20ml syrup lactulose to soften her stool.

    My sister was a breast cancer patient and two months ago, we found out that it has relapsed to pleural and bone metastatis. She is currently paralysed nipple line down.

    Do drop by my blog for a visit as i write on the caregiving aspect.

    I'll keep you in my prayers and keep doing what you are doing. You are awesome!

    1. I am sorry to hear about your sister's condition. According to my doctor, some patients are very sensitive to opioid painkillers but without them we'll be in pain.

      Looking at your sister's condition now, I would suggest the hyperthermia treatment in Germany. Meanwhile, she can also start intensive IV Vitamin C (IVC) therapy immediately. Breast cancer patients responds rather well to IVC therapy.

      Last Sunday, a reader called Darlene posted a link You can read the remarkable recovery of a coma leukemia patient, Alan Smith from New Zealand.

      I am sending positive thoughts to your sister.

  7. Hi CT,

    I was caregiver to my mum and trips to the UH was always a distressing nightmare !

    My heart goes to patients like yourself who are not accompanied by caregiver.

    For my mum, drinking warm prune juice was better then chilled. You might want to try either combination to see which works better.

    Take care and I am sure all your blog readers will be sending you positive thoughts.

    Best wishes,


  8. This is want I do. Put both your hand at above your stomach turn anti clock vise for as long as you can. It will help constipation. I did it yesterday and a lot today. I did it for half an hour.

    You may also try drinking rice water as your meal only. It will help constipation.

  9. i do not know you but i feel for you
    i will keep you in my prayers
    my sister is a member of a MLM - Taihiti Noni juice but she does it mostly to help people. Often she bring bottles of them (they do not come cheap) to visit friends in hospitals - give it to them free and very often it seem to work miracle.
    maybe you can go to their website

    nothing to lose, maybe u can try

    take care and all the best, keep up the courage