Norman was put on Haloperidol (to calm him) and Sertraline, an anti depressent since late July. The haloperidol was mildly effective but I feel the sertraline didn't really helped him. All drugs are with side effects and these two "happy pills" that Norman is taking contributed to his urine incontinence. No matter how hard he tried, he just could not control his bladder muscles. He need to wear adult diapers day and night and in spite of that he still leaks and gets thoroughly wet at night. His skin is red and moist and he needs constant cleaning all the time. Hospice nurse put in a urine catheter which need to be change once in 2 weeks. Yesterday I change it to a silicone catheter which can last up to 2 months without changing. It was very painful for Norman when the hospice nurse inserted the cath and he was tense and screaming! My poor beloved have been so brave all these while but I can see him crying and breaking down silently, his tears just roll down at the corner of his eyes. This crazy disease is like a roller coaster. Some days I fear that he is slipping away and some days he is more alert. All these fluctuations keep me on my toes and even keep my hopes up!
I live one day at a time and continues to ask God for mercy. God bless you all.
Thursday, September 9, 2010
Friday, August 20, 2010
Personality change
Norman is not the same anymore. Its still him, but the light from his eyes is not there anymore. Its almost gone! His character, his personality have change completely.His attention span can be measured in nanoseconds! He shouts and scream in frustration most of the time! Sob! I wonder if he understand us at all now. He does not comprehend time and place anymore but he can still recite the alphabets or count 1 to 30!He repeats whatever I said over and over again for hours!!
It's hard but I try my best to let him know I love him no matter what. When I hug him he could still put his good hand around to hug me too!
Will the lights come back? Will it at least brighten a bit? Can God give us a miracle? Please pray with us. By his stripes, we are healed. Amen.
Dorothy
It's hard but I try my best to let him know I love him no matter what. When I hug him he could still put his good hand around to hug me too!
Will the lights come back? Will it at least brighten a bit? Can God give us a miracle? Please pray with us. By his stripes, we are healed. Amen.
Dorothy
Sunday, August 1, 2010
Hospice role in allevating emotional stress
The unbelievable suffering this cancer is doing to Norman and my family is overwhelming. We did everything possible but still could not stop its aggressive attack. Nobody who have not experience this type of cancer can actually understand the mental and emotional torture he is going through.The exhaustion and mood swings along with the depression is just too much for Norman to bear.It breaks down his fighting spirit and he just give up!I was very glad when hospice arrange for a psychiatrist to evaluate Norman's metal status.
A major focus of hospice care is on the emotional effects of the illness on the patient and his family. Helping Norman to recognized that his fears, anger, frustration,etc are normal reaction to his illness would help us understand him better. The psychiatrist said that it is perfectly normal for him to lash out at me or the children during an emotional outburst.It will be good for him to be able to release his tension by shouting or even crying. In fact we should encourage him to cry aloud or even for me to cry together with him. I usually remain calm outwardly but my heart bleeds inside. Life is so cruel to him.
A major focus of hospice care is on the emotional effects of the illness on the patient and his family. Helping Norman to recognized that his fears, anger, frustration,etc are normal reaction to his illness would help us understand him better. The psychiatrist said that it is perfectly normal for him to lash out at me or the children during an emotional outburst.It will be good for him to be able to release his tension by shouting or even crying. In fact we should encourage him to cry aloud or even for me to cry together with him. I usually remain calm outwardly but my heart bleeds inside. Life is so cruel to him.
Tuesday, July 20, 2010
Hospice Care
Norman had a fall on Monday, 12th July and since then he was unable to walk or to stand on his own. This is a big blow to him as he was still able to walk about the house slowly on his own prior to his fall. Now he is wheelchair bound and need assistence round the clock. Even basic toilet routines and showers is a struggle to me now. I need help! Due to the constant stress and my insomnic nights, I suffered a vertigo attack on 18th, Sunday night, It was so bad that I could not get up as the room was spinning like crazy. I was vomitting, having diarrhea and felt like collapsing at any moment! My children manage to get some medication from our family Dr and I improved after taking them. Will need to continue taking the medication for a few more days.
Dr Ibrahim refered us to Hospice and the hospice nurse and Dr came to see us at our home. They are very kind and helpful and highly specialize at looking after terminal patients. I was given medication to stand by in case Norman have an epileptic seizure and also emergency phone number when I need help urgently. The hospice physiotherapist came today but Norman was in such a foul mood, he wouldn’t let them come near him. He was shouting NO NO NO at them!! I was exasperated, disappointed and sad! They will come again and I pray I can pacify him to have some form of exercise. His muscle is so flabby and have started to degenerate over this 2 passive weeks!
I would like to thank Dato Jeffrey for the I pot.Now whenever Norman is angry or depress we get him to listen to some soothing music to ‘cool’ him down. Many thanks to all my lovely girl friends who came to help and support me in this painful times. Thanks to Moi, Irene, Annie, shirlin, Yew Ai and Dorcas. May God bless you all.
Saturday, June 19, 2010
Terminal Brain cancer and steroid management
When a patient enters stage IV of brain cancer there is no more a hospital can possibly do to rehabilitate him and the patient is told to return home. Stage IV is the final and most invasive, extreme and painful stage. In this stage the tumor has metastasized out of control in the brain, swelling the tumor until it can no longer be reversed.
In this stage, the cancerous cells creating the brain tumor metastasize wildly, producing more and more deadly cells in the brain, causing the tumor to swell intensely and overtake the brain. The tumor quickly begins to effect cognitive functions such as thinking patterns, thought processing and abilities to grasp abstract concepts. Motor skills will fail as well and the patient may fall, be unsteady and uncoordinated, and possibly suffer muscle spasm. The patient's speech patterns will deteriorate along with thoughts and he may be incoherent, stop in the middle of sentences or relate stories or sentences with no logical reason.
I spoke to Dr Lee and he suggest I increase Norman's steroid dosage as he had 2 epileptic attacks and his condition is "very serious".
There are several ways that Decadron increases at this stage can mean good palliative care for the patient...although sometimes with a mixed bag of results.
Edema elsewhere in the body has the luxury of pushing soft tissue outward or into other structures with far fewer ramifications than in the brain.There just isn't much room when swelling occurs in the brain.This swelling results in increase intracranial pressure and can cause a number of effects that begin to impact quality of life and comfort.
Occasionally, depending on the location of the tumor, this swelling will cause midline shift. The midline is a central boundary separating the left and right hemispheres. Even when tumor hasn't crossed over from one hemisphere to the other, the edema caused by the tumor's presence can still push the midline out of alignment, causing new tumor-like symptoms from this second hemisphere. When this happens, it's known as mass effect. When the midline shift is caused by swelling rather than tumor, and when the degree of shift is minimal to moderate, an increase of the steroid dose may be able to help shrink the swelling and restore the position of the midline.
How can you tell that swelling may be severe or may be under-addressed by the current dose of steroid?
The patient is sleeping excessively. When the patient is sleeping 20+ hours per day, is falling back to sleep soon after meals, dozes off even in the midst of full stimulation (eg, a room full of visitors), and seems too fatigued to enjoy things that had been previously enjoyable to him or her, this is a red flag for edema. Norman gets tire easily now and takes 2 naps in the day time.
The patient seems off the mark or fuzzy in several areas of function. One of the best indicators of swelling is when there are new symptoms or an increase in symptoms across the board, in several categories. For example, when the patient is newly incontinent, seems more confused than he or she did just days ago, is now slurring speech or leaving sentences unfinished, is fatigued, and has had a couple of falls while getting around the house, Norman fall off the chair once.
The patient is complaining of headaches, especially upon awakening. Head-ache is an easy indicator of swelling, particularly after the patient wakes up.
The patient is nauseous or vomiting. When swelling is severe, the three red flags are excessive sleep, headache, and nausea.
Maintaining an adequate steroid dose during this period can keep the patient comfortable and high-functioning for as long as possible. As the signs indicate that a previous dose is no longer adequate, requesting an increase can bring about improvements often within 48 hours.
With increases in the steroid dose, unfortunately, can come several side effects.
Mood/personality changes: Some patients experience a worsening of their mood or negative changes to their personality as the steroid dose goes up. Typical may be impatience, rudeness, sarcasm, childlike behaviors and anger.
Insomnia: Steroid perks a person up and difficulty to sleep is very common
Atrophy of the leg muscles: As the steroid dose is raised, keeping the legs moving becomes even more important, in order to keep a patient mobile for as long as possible. Physiotherapy here will help greatly.
Increased appetite: Many patients on "higher" doses of steroid experience a great increase in their appetite. Norman is eating quite well and is getting very rounded in the middle!
He is now fighting every step,refusing to give in to his skinny legs, hugh belly, swollen feet,shakiness, depression, anger, confusion, exhaustion, anxiety and poor coordination. May God gives us strength and courage to overcome this excruciatingly painful times.
In this stage, the cancerous cells creating the brain tumor metastasize wildly, producing more and more deadly cells in the brain, causing the tumor to swell intensely and overtake the brain. The tumor quickly begins to effect cognitive functions such as thinking patterns, thought processing and abilities to grasp abstract concepts. Motor skills will fail as well and the patient may fall, be unsteady and uncoordinated, and possibly suffer muscle spasm. The patient's speech patterns will deteriorate along with thoughts and he may be incoherent, stop in the middle of sentences or relate stories or sentences with no logical reason.
I spoke to Dr Lee and he suggest I increase Norman's steroid dosage as he had 2 epileptic attacks and his condition is "very serious".
There are several ways that Decadron increases at this stage can mean good palliative care for the patient...although sometimes with a mixed bag of results.
Edema elsewhere in the body has the luxury of pushing soft tissue outward or into other structures with far fewer ramifications than in the brain.There just isn't much room when swelling occurs in the brain.This swelling results in increase intracranial pressure and can cause a number of effects that begin to impact quality of life and comfort.
Occasionally, depending on the location of the tumor, this swelling will cause midline shift. The midline is a central boundary separating the left and right hemispheres. Even when tumor hasn't crossed over from one hemisphere to the other, the edema caused by the tumor's presence can still push the midline out of alignment, causing new tumor-like symptoms from this second hemisphere. When this happens, it's known as mass effect. When the midline shift is caused by swelling rather than tumor, and when the degree of shift is minimal to moderate, an increase of the steroid dose may be able to help shrink the swelling and restore the position of the midline.
How can you tell that swelling may be severe or may be under-addressed by the current dose of steroid?
The patient is sleeping excessively. When the patient is sleeping 20+ hours per day, is falling back to sleep soon after meals, dozes off even in the midst of full stimulation (eg, a room full of visitors), and seems too fatigued to enjoy things that had been previously enjoyable to him or her, this is a red flag for edema. Norman gets tire easily now and takes 2 naps in the day time.
The patient seems off the mark or fuzzy in several areas of function. One of the best indicators of swelling is when there are new symptoms or an increase in symptoms across the board, in several categories. For example, when the patient is newly incontinent, seems more confused than he or she did just days ago, is now slurring speech or leaving sentences unfinished, is fatigued, and has had a couple of falls while getting around the house, Norman fall off the chair once.
The patient is complaining of headaches, especially upon awakening. Head-ache is an easy indicator of swelling, particularly after the patient wakes up.
The patient is nauseous or vomiting. When swelling is severe, the three red flags are excessive sleep, headache, and nausea.
Maintaining an adequate steroid dose during this period can keep the patient comfortable and high-functioning for as long as possible. As the signs indicate that a previous dose is no longer adequate, requesting an increase can bring about improvements often within 48 hours.
With increases in the steroid dose, unfortunately, can come several side effects.
Mood/personality changes: Some patients experience a worsening of their mood or negative changes to their personality as the steroid dose goes up. Typical may be impatience, rudeness, sarcasm, childlike behaviors and anger.
Insomnia: Steroid perks a person up and difficulty to sleep is very common
Atrophy of the leg muscles: As the steroid dose is raised, keeping the legs moving becomes even more important, in order to keep a patient mobile for as long as possible. Physiotherapy here will help greatly.
Increased appetite: Many patients on "higher" doses of steroid experience a great increase in their appetite. Norman is eating quite well and is getting very rounded in the middle!
He is now fighting every step,refusing to give in to his skinny legs, hugh belly, swollen feet,shakiness, depression, anger, confusion, exhaustion, anxiety and poor coordination. May God gives us strength and courage to overcome this excruciatingly painful times.
Friday, May 28, 2010
Summary of tumor size and treatment
| Date | Size of Tumor (cm) | Treatment |
| Year 2007 | ||
| 16-Nov-07 | 4.4 x 4.5 x 3.5 | Surgery, Radiotherapy 30 fraction |
| Year 2008 | ||
| 1-Mar-08 | 1.9 x 1.2 x 0.9 | Temodar - 6 cycles |
| 3-May-08 | 1.9 x 1.2 x 0.10 | |
| 13-Sep-08 | 1.9 x 1.2 x 0.11 | |
| 30-Dec-08 | 1.9 x 1.2 x 0.12 | |
| Year 2009 | ||
| 4-Feb-09 | 3 x 3.5 | |
| 16-Feb-09 | Surgery, Glidel Wafer | |
| 30-Mar-09 | 3.4 x 3.3 x 4.8 | |
| 1-Apr-09 | CAAT DIET | |
| 9-Apr-09 | Ruta Graviola | |
| 14-May-09 | 3.5 x 3.4 x 4.5 | |
| 13-Aug-09 | 4 x 3.5 | |
| 3-Nov-09 | 5 x 3.5 x 4 | |
| 25-Nov-09 | Surgery with 5 ALA | |
Year 2010 | ||
| 3-Jan-10 | Stem Cells at Beijing | |
| 25-Feb-10 | 5.5 x 4.1 x 4.1 (New growth - 3mm) | |
| 10-Mar-10 | Cytotron, Ruta Graviola | |
| 21-May-10 | 4.7 x 6.7 x 5.4 (New Growth - 2cm, 2 new growth <> | |
| 27-Jun-10 | Stem Tech (AFA) | |
Sunday, May 23, 2010
MRI after cytotron
We had an MRI done on Friday, 21st May, about 6 weeks after cytotron treatment. Its bad news again. Sob! The damn tumor is now 6.7 x 4.7 x 5.4 cm. Its progressing! And thats not the only bad news! There is 2 small new enhancing tumor deeper in the brain! I am totally lost now. We dare not tell Norman about the new growth. We just told him that the tumor had increase very slightly. But I think he knows better as he is feeling weaker the past 1 to 2 weeks. The cancer is slowly consuming him, day by day. Oh God, why are you so cruel to him? Isn't there anymore good news for us? I wanted him to be one of the few who can "beat" this cancer but now our hope is now dwindling. I miss him so much. He is here but he is disappearing! Where is my husband who climb moutains, trek hills, who fixes eveything in the house, where is he who shares all my hope and dreams, his quick wit, his humor, his tender loving care. We were suppose to sit in our rocking chair, counting the stars from our balcony with our grand children! Now everyday is bittersweet and tinge with some underlying sadness. He is always angry, frustrated and miserable. But he is still here and he is my hero. We all love him with all our heart. My family and myself will give everything for him. We are still praying for a miracle.
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