Keeping the faith

June 7 (Day 15 of Cycle 3)

The pattern of waking up in the middle of the night to nurse my acid tummy and rub hot oil onto my my right forearm continued. So when the alarm went in the morning, I would wake up feeling like I had just dozed off, and it was quite a struggle to fight Setan who would want me to curl back under my covers. Just as well that I do not fancy cold oats and Horlicks which I know would wait for me downstairs after suboh if I lingerd longer than necessary.

Troy and Devi: "If you like sleep Mama Mi, you should have been a cat. We spend more time asleep than awake. We look cute when we are fast asleep and can melt even most hearts. But human beans don't look cute at all, some snore, some have their mouths open and they have those funny drools streaming out of their mouths...urgh....but just look at me and Devi fast asleep, aren't we adorable? Who would have guessed that a Vet nearly put me to sleep and you fought hard for me to be alive and nursed me everyday after my accident. You actually removed big fat jumping maggots from my wounds even though a silly worm would normally knock you out unconscious! You had faith in my wellbeing Mama Mi, and I made it....and now, you must have faith in yours...you are not the sort to give up easily, so hang in there Mama Mi...."

Okay lah, Troy....Insya Allah I will continue the fight even though it gets scarier each time due to the unexpected turn of events each cycle. The sore throat is becoming more intense so I need to adjust my diet to include easy to swallow food yet at the same time, include all the nutrients that I need. As for my arm, I have been told that hot Nutmeg oil rubs can help and so will Minyak Gamat. So I will start on those once the hydrocortisone 14 days prescription is used up.

My new helper has arrived and is around now so I have been busy showing her the ropes around the house. She is 26, from Cilacap, Java, married with 2 kids, 5 and 2 years old. I shared with her my dietary requirements and Kakak had obliged by saying that she would teach her (Vik) how the food should be prepared-not spicy, not greasy and certainly no MSG. So far so good, at least she can iron well, thanks to the extra dose of training at the center when she was "quarantined".

I had let her stay at the center for at least 2 weeks before picking her up to join me at home. Sort of a quarantine period as I wanted to make sure she is not having colds or flu. She had passed her medical and endorsed by Fomema, but just to play it safe, I am taking her to my own doctor for an independent opinion, especially on her chest x-ray as that seems to be the most common problem overlooked by the health authorities for all incoming workers. I hope she will work out. So far so good, the center had trained her well on ironing skills, and at least I can save some money on the laundry! Kakak can cook well but she tends to cook my clothes as well to a right crispy texture......

I got another call from the private care center where my dad is. He is packed to go home to look after me and has been throwing tantrums. He wants me to come and pick him up. He must be really worried and I feel so sorry that I had to tell him about my situation. I tried speaking to him over the phone but he couldn't hear 90% of what I said when I reassured him not to worry about me. But he doesn't want to stay in KL and that is an issue right now while I am managing my treatment. Besides, he shouldn't be seeing me when I am all nauseous and being plastered onto the sofa for the first few days of each chemo. That will indeed worry him, for sure.

I know I will spend sometime tonight trying to figure out how I need to manage and handle this. My other siblings are not "ngam" with my dad so I do not have anywhere to turn to on this. Short of me checking into the home myself(???) and staying there so he can see me and at the same time have access to proffessional carers and medical aid on short notice. Ya Allah, please let me have some pointers on how best to manage this so that it will be in the best interest of all concerned. Amin.

Things to be thankful for

June 6 ( Day 14, Cycle 3)


I did not sleep very well last night. I had to wake up twice at 2 am and just after 4 am to nurse my rumbling tummy which was giving me gastric pains. I tried taking some crackers and horlicks and 10ml of Gaviston after. It seems the gastric attacks are not letting up, and like it or not, I have to remember to have some crackers within reach to help fill up my tummy. It's not like I have not been eating. I have been keeping to a fixed schedule for the main meals and inbetween , would reach out for crackers and horlicks if the gastric pain plays up.


On day 13, there would be no more nausea. I have had the 2 booster shots of Neupogen given on 2 consecutive days ( a subcutanous shot via my tummy) and while I was fine after the 1st shot, the 2nd shot did result in the promised backaches. As it was a passing pain, it didn't bother me that much and I just need to remember that the pain would come shooting sometimes when I am getting up, or was turning around to reach out for something.


Thank God there was no more nausea. All I have to deal with now until things improve are a sore bottom, a sore throat ( or tongue, can't really tell) which makes swallowing crackers a bit of a challenge, gastric pains that comes and goes every couple of hours and my hardening chemo veins in my right arm. Quite a potpourri of pain and sensations to get used to and hopefully will disappear in time. I am just worried about the thrombophlebitis in my right arm, and concerned that all I am doing is rubbing a thin layer of hydrocortisone cream(1% steroid) over the affected area for 14 days. So far , I have not noticed an improvement and my elbow movements are restricted somewhat.


But I can still drive around and do personal chores. I met up for lunch with Dalilah, a lovely young lady who is a cancer survivor and we exchanged experiences. As expected, everyone goes through some similar side-effects but there were some that may be more prominent or less in others. She did not experience Thrombophlebitis ( but drug was administered via drip rather than manual) but she shared the common experience of gastritis, and how she managed her situation then.


I realised that all these pains and additional trials that are coming my way could be Allah's way of putting me on my toes, and that Allah will dish out just enough to get me off my comfort zone and get back on track. I had slowy assumed a "normal" life and treated myself to stolen moments of no-no(s) during treatment-the spicy curries and sambals sometimes because the tastebuds couldn't taste anything otherwise, and coffee because it smells so good! But I musn't let this continue and had got back on track after the serious gastric attack 2 Sundays ago.


Although I am riddled by the pains and side-effects that I have to manage, I
always try to take a moment each day to be thankful for the blessings that come my way. I always tell myself that things could be worse, and they weren't. I still have my mental faculty intact, so I can still pursue my favourite hobbies of reading, writing, and doing puzzles. I still have my sense of humour which is really helpful in seeing the positive and funny sides of things.


I have enough to enable me to live comfortably and independently while managing my illness and hopefully I am not causing a burden to others. I am also still able to help others if they need my help. I have a good support system to see me through my treatment. And when I feel ready, I can start on my personal projects that will make some of my dreams come true. My Dad is doing very well where he is , and my cats are managing without me just fine. And although I can't be with my long distance buah hati and he with me, our relationship hasn't changed just because I now am a BC patient. And today I heard that my PM is getting married! Now that is really something to be thankful for as no matter how important a man is, he needs a woman to stand by him and inspire him to do the right things..for us, for the nation...

My Boy Troy says: "Oh yeah? I don't need no woman....look, Milla is happily suckling me even though I am not a female cat. She thinks I am her surrogate mum and won't leave me alone..I like that, I feel really needed..."

Booster # 2

June 5 (Day 13, Cycle 3)

Ijan returned to Kampung today and I dropped him off at the Bangsar LRT for his onward journey to Pudu Raya for the Masjid Tanah bus. I went to the medical center for my second booster shot just before noon.


When I reached the Chemo daycare center, I bumped into an old, old colleague from the MNC I used to work for. It was a pleasant unpleasant surprise, that we both are undergoing treatment for the same problem, and the best part of all is she and her husband are living in the same neighbourhood as I am. What a small world. She looked good , with a smart wig and all, and after 4 cycles of AC and now a weekly low dosage of Taxotere, she appears to be coping very well indeed with the side effects.


She said the same thing about me, that I looked fine for someone after 3 cycles and getting gastritis, thrombophlebitis and sore mouth. We compared notes on our treatment and side-effects. She is very lucky indeed that she did not have to experience thromboflabitis even though she does not use a chemoport. But then again, her drugs were not manually administered but wee administered via drip method.


I made a point to discuss this with the Onco nurse and will probably mention to my Onco on the next visit before my 4th cycle is carried out. She said that as my veins have shown indication of being weak and "collapsing", we will need to make sure if manually administered, it has to be done at a slower rate and increase the amoutn of saline to flush through at the end of the drug administration.


I am trying not to think about chemo ports and blood transfusion right now. I went to the supermarket to stock up on beef bones (with marrow) to be turned into soups and broths for consumption between now and June 14th, the next chemo date.


My friend SNA came to sleep over so that she can join her nephew, who lives nearby , for a trip to Singapore tomorrow. My sis-in-law and nephews dropped by when I was out at dinner. As Kakak was around and let them in, they waited until we got back. They were planning to visit my dad before the school holidays are over and I wanted to send over some red dragon fruits which is my dad's flavour of the month.


The Neupogen finally did result in a slight back/waist ache. I should have taken the pain killers after all, but I believe it will pass and if I don't jump about too much, it would be manageable. Insya Allah, we'll see......

Thrombophlebitis, wazzat???

June 4 (Day 12 of Cycle 3)

This is my zillionth attempt to log on to do a posting. TMNet, buck up! My stress level is being tested really severely. The last thing I need after a somewhat harrowing time at the medical center is to sit in front of the computer endlessly trying to refresh a conection which keeps bumping me off? Is this a sign? Next time I go to Starbuck.


My interim FBC today was somewhat disappointing. 1.8 vs the 2.8 (after Cycle 1) and 2.4 (after Cycle 2). It seems to be dipping and showing a downward trend. Any lower and I may have to go for a transfusion. So it was another booster shot today (Neupogen this time and not Granocyte) and I have to go in again tomorrow for a 2nd booster shot. So, I may want to check out the sin-seh shop and ask them if they have anything specific to boost wbc. My doctor has nothing specific to recommend other than maintain a good, normal diet and to include red meat in my diet ofr overall blood heatlh. Which is what I have been doing. I have transformed myself from a once month steak person to a weekly red meat eating carnivore-liver, beef bones with marrow, beef, chicken, lamb cooked in various styles. Just imagine how worse off I might have been if I had stuck to a vegetarian or white meat only diet.


My regular Onco is on leave, so I got to see his Locum, Dr A. I asked her about my right forearm, why the stiffness and the pain. She told me my chemo veins might be inflamed and I have what the medical proffesion calls "Thrombophlebitis". My veins in which the chemo drugs were administered were inflamed and are blocked for normal flow, and hence the hardening. When I asked, she said the condition is reversible but will take a long, long time. I like it when doctors tell me as it is and not sugarcoat the real situation. At least I know that my right arm will need some careful handling.


I asked what could have caused it, should there have been more flushing with saline to get the drug moving along and coursing away into my entire system and not "held up" along the veins in my arm. She told me a bag of saline is usually sufficient. And that this happens sometimes to chemo patients who do not use chemo ports. But no one had advised me to look out for this possible complication. I felt slightly let down. Now I am told that in the event that the last 2 veins cannot be used for future chemos ( I have 3 more to go ), and if they cannot locate a fresh, strong vein, then a chemo port need to be inserted in my chest. I hope I will be spared another Op, another G.A. Just 3 cycles to go and I needed a chemo port? Might as well set one up in the first place before the whole chemo regimen started. Dr A prescribed a mild Hydrocortisone cream to rub on my arm to help reduce the inflamation.


When I got home, I called up my Breast Surgeon and asked her if she has come across similar patients with Thromboflabitis. She said it can happen but reversible with time. To be honest, the thought had crossed my mind before. That if the chemo drugs can kill cells, what damage can it do to my healthy veins as it is being injected slowly but manually through my veins. I now have questions in my mind like what is the rate at which the drug should be injected. I can see that for the more powerful AC-T dosages used for my other chemo buddies, they are given the dosage via a drip. For me, an Onco nurse sits by my side and shoots the drugs v.v.slowly into my veins with the saline entering via a drip. When the drug has been administered, I would continue to sit and wait until the bag of saline is emptied. I need to reconfirm for the next chemo the entire process again. How many bags of saline will be required to flush the chemo channel and how much time is allocated to shoot the chemo drugs and if the rate is safe enough for me now that we know my veins can get easily inflamed. Can it be done even more slowly or should I use a drip?


I felt angry. But at who and at what? I have primed myself when committing to the chemo regimen that I should expect the unexpected. So why am I mad? I have read almost all the books that I can lay my hands on and I had not come across anyone talking about Thromboflabitis. When I got back, I googled the word, twice, and twice my notebook did an automatic shutdown when I tried to open a file on the topic. So all I know about it now is that it is an inflammation of the veins due to the administration of the chemo drugs, and it can happen again. The OED describes only Thrombosis - a serious condition caused by blood clot forming in a blood vessel.


Now I am worried where the clot that is forming the blockage will go to, how do we get trid of it? Someone says to massage my arm gently and often to encourage flow and perhaps to dispel the clot and blockage, but where will it go? To my heart? To my brain? That will be more serious. I am beginning to sound paranoid but shouldn't I worry knowing what I know. It is no good watching to see what happens next, like what I had been doing in the last 3 cycles....read about the side-effects, looking out when they will happen, feeling strangely "relieved" when they happened.


I now need to ask everytime, what are the side effects even for the most simple treatment. When I was given boosters, I had asked what are the side effects? Backpains and bodily aches, I was told, so some strong painkillers were given for 2 days (with granocytes). This time I was given Neupogen but Dr A did not prescribe painkillers. I was told the side effects are the same. My Onco nurse asked if I wanted the painkillers.


At this point in time, I have the FEC in my system, I am taking Nexium daily with Gaviston 4X a day, I am rubbing Hydrocortisone on my arm, I have Neupogen shot into my tummy for 2 days. Do I really need more drugs in my body? I said no and told her that if it is just a backache that will pass I can live with it. So, no painkillers and guess what, there were no backpains either?! Maybe there were but between my slightly numb left arm(surgery side) and my stiff and "sengal" right forearm, I had probably grown immune to new pains?


All day I reflected about where I am in the process right now. Almost completing the 3rd cycle, almost completing 50% of the regimen. The surgery no longer bothered me except for the scars from the plaster allergy. The chemo is bothering me, a lot. Really a lot, I tried as much as I can to remain positive, keep my faith alive that the treatment is a passing journey,that I need to savour and learn what the journey is teaching me. It will make arrival at the destination much more worthwhile. It has been a test of will and fortitude.


I can appreciate why some people just gave up halfway, or even when they have just one more cycle to go. I had actually met a few. It is so easy to feel discouraged, especially if you are not made to understand why certain things happen. Chemo is no fun. I sometimes find myself asking the inevitable question which I believe crosses the minds of all chemo patients - can this be enough, I have done 2 or 3, I don't suffer from pain caused by the cancer, but the chemo is killing me and my energy, shall I stop here? I asked this question each time a bout of nausea and fatigue hits me, and so far, I have willed my spirit to go on, if only to have faith that it will help me be around longer if I continue with the chemo. As far as quality of life goes, it is zilch during chemo moments of side-effects, but I had always looked forward to the 3rd week post chemo when my energy level bounces back and I bounce back with a vengeance. Just 1 week each time of "normal" energy level is a blessing


Today, on Day 12, I am a bald headed chemo patient with nails clowly turning blue. My tummy twists and turn with gastritis although I have medication for it to reduce the pain, my left arm is slightly numb, my right arm is stiff and "sengal", one boob is slightly flattened but supposed to fill up again in good time, I do not have constipation but my bowel movement is a battle in its own right because I am not eating as much vegetables when eating only porridge for meals, I think I am getting fresh blisters in my left cheek and my mood is erratic.
BUT I AM ALIVE. Syukur Alhamdullillah I am alive.


I had 3 friends visiting at various times today after I got back from the medical center. So I had less time to be bitchy with myself. One brought a book she said that is really good for me to read at this time - Man's Search for Meaning-by a physician Victor E Frankl, a survivor of the Nazi concentration camps in Krakaw and Dachau. He proved that regardless of what outward calamities one has to endure, at the end of the day, survival is about controlling the mind, the mind and one's faith will help a person to overcome anything. Nothing new really, as I know how powerful the mind is and I had heard this before, but it will be interesting to read about how this guy lived through the horrors of Nazi death camps, where death was a sure thing for most of the inmates.


Hopefully I will be further inspired. My dear brother is really worried about me and decided to stay on in KL for another day to see that I will be okay after my second booster. I am off now to get the second booster.

Interim Blood Count (FBC) tomorrow

June 3 (Day 11 of Cycle 3)

Rosella Petals ( also known as Ribena Flower or Hibiscus fruit)

I will be going for my interim FBC tomorrow and if my wbc count is low and less than 3.0 whatever, I will be given a booster over the next 2 days to prop up the count in time for the next chemo (the 4th cycle) on June 14. I don't really know what to expect, as I have tried, as before, to eat up for my wbc count (pucuk midin, kacang botol as well as beef broth from beef bones/marrow) but the effort seemed to keep it at 2.0++ but not more than 4.0. What I have not tried is ganoderma (linzhi mushroom) and that is because it is not easily available in shops. At least not anywhere near where I live.

When I buy something as important as a supplement to help my body recover, I have a strong preference to buy it from someone I can personally see, talk to and interview (more like asking silly and obvious questions, just to be sure).

In any case, que sera sera. I have been boiling red dates and drinking the infusion as it is supposed to help boost blood. The same with Rosella buds. These are fleshy red petals of what is locally known as "Hibiscus" fruit ( but really a flower) and the infusion, deep ribena coloured, tastes almost like cranberry or grape juice, sourish-sweet and very pleasant to drink and thirst quenching. Especially useful to get me to drink as my tastebuds have now developed an aversion to plain water, especially if I see ice cubes floating in the glass which would trigger a wave of nausea. The only plain drink that I can handle right now is air zam zam, but my supply is running out and saving that for severe gastric attacks as the high ph content of the water is very soothing for an acid tummy.

I must remember to check with the doctor about this hardening of the veins in my wrist and forearm (right, non-surgery side) and explore what could have been a probable cause. Someone I met at the Relay For Life event mentioned that I might be developing "kelloids"(??) in the area where the chemo injections were done and I need to make sure I massage the area after each treatment to prevent kelloids. If this is true, then I have to admit that I wasn't aware that it was something I had to do, so did not do it. Infact, I had avoided touching or rubbing the area where the chemo was done in case I rupture or injure a vein. Or so I had thought.

So the new piece of information that I should be massaging it well after treatment was and is news indeed to me and I wonder why I have not been instructed or advised to do this. It is usual for some saline to be continuously dripped to flush out the veins after each chemo session is done and I remember this was done at the last cycle. In any case, I am sure there will be an explanation and that if required, I will be prescribed whatever necessary to help relieve the feeling of tightness in my forearm.

I spent 7 hours away from home today. At 3pm, SNA and her son came by, SMM later joined in and we ended up going to Ikea at Ikano. I ended up buying a bed for the maid ( she will be more of an assistant than a maid as I don't really need a maid) who will be joining my household by the end of the coming week. SMM got a typist chair for me as an early birthday present as they see how much time I spent on the computer but sitting on an antique chair which is all wrong ergonomically for long bouts of keyboarding on a desktop.

Ikea was so crowded, today being Sunday, the school holidays and start of the month ( fresh from payday), and I really had to make sure I didn't get trapped within a crowd that might be sneezing or coughing. The place was so packed and we had to inch our way through the maze of Ikea aisles and display items as though we were on a conducted tour of a museum or gallery on a package holiday....! I felt like fainting by the time we reached the Cashier and luckily my friend's son was able to get some hot Ikea currypuffs ( very tasty with egg) for us to munch through while waiting in the queue! Okay, the currypuffs only contained very mild curry flavoured potato and egg filling so I don't think my Onco will be displeased.

After afternoon tea at a very cosy teaplace at The Curve (it was pouring cats and dogs outside) we decided to go to Tesco to get the weekly grocery shopping done. We spent quite a bit of time at Tesco as there wasn't much point rushing back as we would have been caught in the traffic jam outside. My tummy was beginning to feel sharp again, so we decided to have dinner before heading for home. Dinner was at Madam Lim's - a wide variety of one-dish meals at very reasonable prices and very,very tasty. Everyone enjoyed their selection tonight. I had a mild Meehoon Soup with absolutely no accompanying cili padi in soysauce. I took some Gaviscon afterwards.

And believe it or not, we stopped by Kayu for "one for the road" Teh Tarik before we actually headed home. We were still caught in traffic at 10.15pm and it was just as well that we made use of the loos at The Curve or else SNA will have some people bursting their bladders in her MPV while we inch our way back to Sri Hartamas.

Hujan Rahmat.....O Blessed Rain!

June 2 (Relay For Life Event at Bt Jalil, organised by the Nat Cancer Society of Malaysia)

I snapped away on my otherwise trusty antique-digital camera which was low on battery like me and none of the desired pictures turned out at all, just black blobs with white spots (like a nasty and suspiciously indicated mammogram). Only these turned out recognisable. The one I took of Dalilah and her team was just a black patch, cant' even see a spot of pink! Sorry, dear!

June 2 (Day 10, cycle 3)

Day 10 is d-day when my wbc will be at it's lowest, the nadir and that is when my system would be at it's most vulnerable state, easily susceptible to infections. I am in Melaka, feeling so, so good to be back in the family home, just got to spend some quality time with my dad and feeling great because all my babies are around me. Even though the acid stomach and refluxes are still with me, I suppressed them with Nexium and Gaviston......

My plans for the day:

Ziarah Pusara Emak

Go Shopping at Masjid Tanah town

Call Mechanic to recharge flat car battery (my dad's)

Visit some of my relatives

Spend quality time with my babies to last for at least a month

Review my music CD collection and bring good chill-out CDs to KL

Join the Relay For Life NCSM event at Bt Jalil on the way back to KL

Pop by the Maskara/Pena event at DBP

Attend UZ Tahlil at Masjid I-Utama

With the gastric, I found myself waking up at odd hours in the night, very conscious of the twisting pains in my tummy, and needing to drink a warm glass of Milo and snacking on crackers to help relieve the pain. Gaviston cannot be taken on empty stomach, always after food. So I was up very early and woke up all the cats while my brother happily continued to snooze in his room.

I did some reading. I couldn't browse the internet as my laptop was flat ( I did not bring charger). But if I had been more creative, I could have borrowed Ijan's laptop and log on using his.....but brain was not working that I even forgot that he has a laptop of his own. I watched TV showing a leadup to the Agung's birthday and investiture ceremony to be held that morning.

The weather was cool. The car refused to start again so we walked to visit my late Emak's pusara. It would have been an easy walk uphill normally. But with both of us carrying a container of rose water and a small basket of flowers from our garden, and me wearing baju kurung, the 15 minute uphill walk had me huffing and puffing. There were a few other people visiting their loved one's graves as well and clearing weeds and other unwanted growths.

We spent some time cleaning Emak's pusara and I sat there for a while talking to her in my mind and reading the surah Yasin. Sad that I was not able to visit as often lately( and missed doing that on Mother's Day) and sad that she is not around for me when I really could do with a mother's unconditional love and caring.

My Emak susu's house is on the way back but she wasn't in as there were a few weddings going on and she had joined the gotong royong activities. Puan Salmah has a daughter my age, and when Emak wasn't well while nursing me as a baby, Puan Salmah had breastfed me as well as I didn't like powdered infant formula it seemed. So, she has been a good confidante and also a person that I needed to speak to about my illness which I had not been very open about earlier. She came by the house to see me later and was a bit kecik hati that I had not mentioned to her the full extent of what I am going through. She was reassured that I have enough support and help in KL and wanted me to keep her informed on my progress.

The talk with her was quite an emotionally charged session and I didn't feel like going to town. I also felt quite exhausted after the walk back to-fro the cemetery. Instead I began packing for KL and had a quick lunch of noodles with vegetables and lots of fruits for dessert. Then, it was quality time with the cats....checking each one of them visually to make sure there are no hidden injuries and manja-manjakan all of them. They seemed to sense that they will soon be confined to their kandang, no more freedom to run around to chase after chicken, birds and monitor lizards...

Ijan wanted to join me in KL and go to the Bt Jalil Relay For Life event as well, so we left enough feed, water and litter for the cats to last 2 days. RJ came to pick us up at 3.30 and after an endless series of goodbyes, I left my babies who each gave me a hard stare as though to say "there you go again..so when will we see you next, huh?"

After stopping for a quick Cendol stop in Alor Gajah, we were on our way to Bt Jalil. I know on Day 10, I really should be a good girl, stay in and avoid crowds and rainy weather in case my system is compromised when my wbc is very, very low. But I really wanted to join this NCSM organised event. I have some funds to hand over to Adeline Joseph and I do so want to meet up with Dalilah Tamrin, of Raden Galoh Blog who is an admirable cancer survivor with spirit. I know she is already at the stadium as we had been in touch through RJ's mobile as I had forgotten to pack the phone charger for mine.

I bumped into a few familiar faces when entering the stadium, corporate ladies, some retired, some still actively parenting, who were from my former school. It was nice to bump into them unexpectedly and I felt a warm gush of appreciation that they found the time to support an event like this when I know that none of them had cancer or had lost anyone to the illness. On a Saturday night too. As I found later, one of the guests of honour is Dato Zuraidah Atan of Affin Bank, who coincidentally was also from TKC.

I next went to look for Adeline, met her and then went to look out for Dalilah, who based on her text to RJ, is wearing pink T, pink scarf, pink hat, pink shoes and black slacks. As I had seen her blogpost-portrait, it was very easy to spot her from the crowd, thankfully she was seated away from the other Pink Challengers at the time. We went over for a quick hello. It was nice to see her sweet,smiling face and she looked so cheerful that I felt really happy and inspired by her spirit. She was going to walk with the rest of the Pink Challenger team with the BCWA.

RJ, Ijan and I went to the field to find out what's happening there, say goodbye to the friends we met earlier and planned to move on to our next agenda which is to check out the Pena event at DBP. However it started raining, we were caught right in the middle of the field and found shelter under one of the garden tables with umbrellas and chairs that were set up in the stadium field, facing the stage.

It poured. It really poured and I thought what a bummer. A great event like this when everyone was looking forward to walk, run and be outdoors to keep the stadium buzzing with activities and movement all through the night until 10 am the next day and it rained! But I remembered. This is all part of the Almighty's plan to test us, everyone of us in the stadium. If any of us would give up and go home. It rained on parade day....ain't it terrible? But the organisers remained positive, the crowd remained positive, the rain had dampened the tracks and the field but not the spirit of everyone of us in the stadium.

It poured like there was no tomorrow. The balloons were flying even though no one released them. I could feel the rain hitting us even though we were under the umbrellas. I was worried about my laptop which we had to carry with us in case leaving in the car will tempt someone to break open RJ's car, as a similar misfortune happened to a friend just a couple of days ago. There was even thunder and slight lightning, but everyone remained positive and careful, with the organisers and MC anouncing that we will go on as planned , unless it is unsafe to do so because of the lightning. It will just be a 30 minute delay. I saw some of the hundred over tents flapping in the wind and rain and hope they don't fly about as well!

A miracle happened. When the MC announced that it was time for the survivors to start their walk I could see that the rain had diminished. The cold downpour had been reduced to a slight drizzle, a really harmless drizzle. It was about maghrib time and the MC had announced where the surau is located so that Muslim particpants could go for their solat.

There was soon a crowd-queue on the tracks with all the walkers assembling ready for the MC to announce them. There was so much for anyone who was there to be proud of. Of our faith that God will be on our side to make the walk cool and bearable after the heavy downpour. Of the resilience in spirit of everyone there, the cancer survivors and caregivers, the organisers, the volunteers and everyone else on duty in the stadium last night. It is highly symbolic of the undaunting spirit of those fighting cancer, we never give up unless the Almighty decides that it is time for us to go.

Although there were a lot of fun events that added to the cameraderie during the evening, there were a lot of serious learnings to be drawn, not just by cancer survivors, but everyone who was there that night. If the mind wills it, and the Almighty blessed it, it will happen. The rain, or Hujan Rahmat, as Dato Zuraidah captioned it, was indeed a true test of the spirit, of not giving up even though it appeared as though the odds were stacked against us. RJ, Ijan and I ended up staying longer than we had planned and decided we would stay on until 10pm.

Long enough to be there during the survivors walk - I waited for Dalilah in the far corner of the stadium, and cheered her and the Pink Challengers Team on when they crossed the corner. Long enough to be there during the Luminaria event- a beautiful moment when the whole circumference of the stadium field was lined up with a continuous line of luminous bags containing a lighted tea-light in each, giving the place a very warm glow, so cosy and soothing after the rain earlier. Each candle had been purchased for RM1 and each dedicated to a beloved, long or recently gone due to cancer. It was a continuous line along the stadium track and it was a beautiful, and breathtaking sight in the dark of night. It was a moving moment.

Zamil of Malaysian Idol fame sang 3 moving numbers during the time when everyone was invited to walk around the stadium in memory of the loved ones who had lost their fight with cancer. He had lost his dad to cancer of the liver. As I couldn't afford to be in a crowd, and it was still slightly drizzling, I remained under the umbrella, dedicating an Al-fatihah for people that I know have succumbed to cancer, and also for the parents of my friend as I had to miss the Tahlil on the same evening. New friends were made that night and new experiences shared. By the time we got home, I was thoroughly exhausted and realised that I forgot all about my tummy. I was earlier worried that it might cause me a problem, so had lined it with a black-bean pau and milo and a quick dose of Gaviston while seated under the umbrella in the rain.

Next year Insya Allah, with no side-effects to worry about, I hope to be able to participate a lot more and form a group to camp overnight. The 100+ people who were lucky enough to book a tent for the night must have had so much fun and in a very safe and warm environment.

Now A pain in the arm....wrist...

June 1 (Day 9 of cycle 3)



I had to wake up in the middle of the night for a mug of warm Milo and crackers to check the acidic feeling in my tummy. It was a long way to the kitchen to heat the water and I passed by my babies who were allowed to sleep in the house instead of in their big cage under the Serambi. There was one on the TV cabinet, 2 on the daybed, and most chairs had an occupant. I felt like "Cat Woman" (sorry Halle Berry for the unlikely association!). It felt strange to wake up and having to go to the kitchen just for a Milo. I should have stationed a hotwater flask and the necessary utensils and Milo in the room so I didn't have to get up and wake up all the cats. They jump at the slightest sound.





As the acidic feeling didn't quite leave me after Milo and crackers (5!), I decided to take 10ml of Gaviston. I was advised not to exceed 4 doses in a day, and I knew I had only 3 yesterday. It seems to me that this feeling in my stomach is not going to let up from now on, even if I avoid spicy food as the "damage" had been done, with the drugs affecting the lining of the digestive system and I had helped to expedite and trigger it before it was due. It will likely recover only after all chemos had been completed and when the system had time to heal naturally in good time. I don't really like taking the anti-gastric medication because of all the chemicals it contained, titanium oxide and whatever, which in turn have their own set of side effects.



One advise I would give to any new cancer patients doing chemo would definitely to stick to a plan of no chillis and spicy foods while still on a chemo regime and not to sneak in the odd laksa or curry as there is a price to pay. My only consolation is the spasms are now not as severe as the ones I experienced pre-nexium but how I wish I don't have this problem which now requires me to carry small packs of crackers in my bag and wake up at night clutching my tummy and then having to feed it Milo and crackers each time the spasms, though mild, start to hammer. I will now not smirk when someone tells me that they cannot puasa during Ramadhan because of severe gastritis, as they need to feed their tummies frequently.





Last night when I was about to sleep, I was surprised to see my Boy Troy placing himself squarely on my bed! As he hasn't been groomed since the last time he was in KL when I would do it for all of them, I did not think it a good idea to have him sleep anywhere near me for risk of infections or unintended cat scratches which might expose me to infections. So, he was gently coaxed to sleep on the bathroom mat. Ashley had booked herself a spot on the telephone table while Putri slept on my small trolley bag! They were all glad to see me and naturally assumed it was ok for them to hang around the room where I normally sleep.





At time of writing this, my mobile rang and it showed a strange non-directory number. It was one of the carers in the nursing home saying that my dad wants her to check if I am okay. See, that is why I hesitated about sharing with him the true nature of my illness, as he is now very worried and apparently was tossing and having nightmares last night. He spoke to me on the phone but he couldn't hear what I said in return. He had lost 80% of is hearing in the last few years so it is difficult to have a long distance teleconversation with him. I told the carer to tell him not to worry as I have good doctors and I see the Onco every 10 days. And I will visit again to show him that I am fine.





Today I noticed that the base of my nails are beginning to assume a darkish tone ranging from deep brown to purplish-blue. I think another of the side-effects is manifesting itself. And a strange sprain-like ache is sometimes present in my right wrist along the veins that had been used to administer the chemo drugs. It started a few days ago, but I had thought it was just a stray shooting pain that will not repeat. But this now has been persistently present for the last 4 /5 days at least. It is not painful but aches whenever I moved my wrist a certain way. I am just wondering if the chemo drugs might hurt the veins. It felt as though the veins had hardened in places.





When I determined the starting point of the ache, it is on the upper back of my hand along the wrist bone. Tracing the pain, it seemed to have started from the vein used during the second chemo and I could feel a slight hardening of the vein and perhaps just a slight impression of a swelling under the skin. If I were to lightly run my fingertips along the vein, it is obvious there is a light swelling (but not noticeable visually, no bump) under the skin and it could be a vein. When I stretch my right arm, I could feel a strain and all along my forearm I could feel a tightness, so that I could not stretch my arm without noticing the tightness.



I don't recall twisting or injuring my arm in any way, so it is another mystery developing, and certainly not one that I had read about. I hope it will go off as silently as it had crept up as my imagination is beginning to function on overdrive right now, that I might have burst a vein. Certainly something I must remember to mention to the Onco when I see him next.





The acidic feeling is back, and I am burping again. But a much improved situation. I was told by a chemo-buddy that this is a side effect waiting to happen, whether or not I had downed that Assam Laksa. It is both a consolation and not. It means I have to live with this discomfort for the next 3 cycles (translated into 12 weeks, including the post-chemo of the 6th cycle.



I am so used to walking around not covering my bald head in my KL house. However here in Melaka, it feels really odd to do that so I use a turban style serkup. Like this morning when I had to run some errands and my dad's car wouldn't start, I sought the help of my relative to drive me around from errand to errand and I put on the turban. I was wearing a baju kurung, so it looked cool. But it was hot, as it was close to mid-noon, and I was so tempted to pull it free. But I managed to complete all errands , turban intact.



There were a few weddings happening all over the kampung and I saw the many photostated slips of paper announcing so & so's daughter or son's wedding, the date , time and place. Usually at home in gotong royong fashion like the good old days. A simple enough, straight from the heart kind of invitation often delivered personally and likely bearing with it a premium of sincere expectation of one's company at the event. Unfortunately I will not be able to join them on Sunday as I would be leavng for KL tomorrow (Saturday afternoon). I would miss the heavenly gulai kawah of fresh beef (usually slaughtered on the spot a day before) rendang and nasi beriani cooked gotong royong kampung style, with the very rare ingredient nowadays of genuine sincerity and open-heartedness of wanting the guests to be there to celebrate the event and not to show off what kind of extravaganza the family can afford, as is happening in the cities and towns today........I am glad I don't have to marry off my babies!