July 9 (Day 5 of cycle 5)
Syukur Alhamdullillah I managed to get a grip of my emotions. I agree with my close friends that it is a waste of time to emote and waste my energy worrying about things that will not and could not change. I need to focus on my physical wellbeing for now and keep my emotions in check no matter how challenged I feel on the situation.
To be fair, people must have reasons and justifications for their actions (or inactions). It is not for me to judge. What I can manage is my own reaction to the situation. And I hope dear God, that I will be fine soon to be able to make the trip and be with my dad. I will have to understand that they may have their own sets of limitations that prohibit them from visiting their own father, maybe the same or different from the sets of limitations that have been put forth before. And I must not take it personally on behalf of my father. Hey, he may not even notice it. Or does he?
The first week post any chemo is usually a "down"time, my mood is normally in the pits even without any additional stressful stimuli. This time there are so many, Allah is testing me to see how well I can balance my emotions and put things in perspective while faced with the side effects of nausea and fatigue and feeling helpless and dependent on others. I need to be really honest with myself if I am displeased with myself for being incapable of being there for my dad or with my siblings for their can't -be- bothered -he'll - be- fine attitude?
I am not going to waste more energy thinking this through. Insya Allah, I will pick myself up both physically and emotionally in a day or two, and will make the trip to visit my dad. I can't thank my friends enough, the ones who have come foward to offer to drive me to Melaka anytime and who asked me to give them a yell if I need them to help. May Allah bless them always and may their lives be enriched in return for all the kindness they have showered on me.
For now, I need to make sure I eat well, rest well and worry little and have faith that this situation will sort itself out in the way it is intended by the Almighty. The last sms from my dad is the same, he is still in the ward and I am not to worry and that I should take care of my health. And I will, Insya Allah. Eating is a challenge now and my appetite is the last thing that is occupying my thoughts. I need to remind myself that I have a condition to manage and what my doctor has advised, to manage my stress level while undergoing chemotherapy and its myriad side effects which can be draining on one's immunity and mental state. Depression is to be avoided at all costs.
I can't wait for my sister in the UK to be back in the country. At what, 14 hours flight hours(?)away, she has spent more time with my dad than all the other siblings in this country combined over the last few years, I think, through her visits. And she has a full time job and raising brilliant kids. I guess someone is right, it is all about priorities.......
Monday, July 9, 2007
Sunday, July 8, 2007
Day 4 Cycle 5 (Gastric again..)
July 8 (Day 4 of cycle 5)
I had to wake up at 4am to make a cup of warm Horlicks as I was curling in pain, the gastric attacks are back with a vengeance. I am not sure if this was chemo drug-induced ( the increased dosage) or due to nervous and guilt secretion due to not being able to be near my dad in hospital. I was worried about him feeling upset that none of his kids are around, other than Darsih the fulltime care giver that was assigned to be with him all day.
I need to focus in getting over this hurdle of gastric pains and fatigue and Insya Allah, by Wednesday or Thursday I hope to be able to visit him, if he is still in hospital or at the Nursing Home, if by Allah's grace he has been discharged. I am truly upset that none of my other siblings have made an effort to go visit and be there for him or even discuss about how together we can come up with a plan to make sure someone is there.
It has always been my role to initiate, organise and plan and I ve never complained. However, when I am indisposed like this and very, very sensitive to unthoughtful remarks concerning my dad, I know better than to be a hero as it will affect me in more ways than one. He is our father for goodness sake and he is not well and someone needs to be around him just for reassurance. As far as I know none of us have a life and death duty here in KL that we couldn't leave behind for a short while to give a quick visit. I would go as my friend would drive me but I know my dad will be discouraged if he sees me in pain and looking pathethic like right now. I would wait for Thursday when I hope to be feeling better and able to motivate my dad. And beware the first person to call me then to ask how is dad?
I spent all day at home venting to friends about my situation and reading the Sunday papers. Some friends dropped by to help finish up the birthday cake and had dinner with me. I need to whet up an appetite as the tastebuds are on strike again and everything tasted bitter and awful and the strange after taste in my mouth did not help my moods at all.
What a timing to be faced with this dilemma. Which needn't be a dilemma if my siblings have been more responsive to my dad's needs. What had happened to them, how did they change, did having their won family change them? I would have thought that being fathers themselves they would need to set a good example to their own children? What values are they imparting to the kids? I know for a fact that number one sibling, with due respect to his highly placed station in life as a retired university lecturer, is sitting at home as both husband and wife have taken on the role of minding for a grand daughter. "Our priorities have changed, we have a grand-daughter now" was what they told us last year when we commented that they had never visited my dad at all since September 2005. What kind of b.....remark and excuse is that?
I am so upset and vented with friends. As if to comfort me they shared that they are in the same situation. We were so, so , so close before and things changed after Emak left us. According to my friends, friends are more responsive than siblings and relatives. But in my case, I am not expecting them to do anything for me, I was just hoping that all the kids will share in their role and responsibilities to make our parents' golden years happy. Dad is in hospital, can they not visit? Is that too difficult?
This is just an example of some of the cobwebby thoughts lurking in my mind that have been a real challenge to manage. What if I am no longer around, who would respond to my dad's call for attention. They will be the first one to visit him if they need anything from him, but when he needs them where are they???????????
Deep breath.....suck in air......deep breath....Ya Allah, please grant me the patience and the strength to manage this my way, and Ya Allah, please show me the way for You are all knowing. Forgive me for venting out over my siblings but You know our story and may You open up their hearts and mind that our father needs them too....As far as I know, none has contacted the hospital or the Nursing Home to find out how dad is doing. What is wrong with them?
I really need to relax so as not to aggravate my acid stomach. And I really need to focus my mind so as not to be sick and throw up, not because of the chemo drugs but due to this very testing situation.
I had to wake up at 4am to make a cup of warm Horlicks as I was curling in pain, the gastric attacks are back with a vengeance. I am not sure if this was chemo drug-induced ( the increased dosage) or due to nervous and guilt secretion due to not being able to be near my dad in hospital. I was worried about him feeling upset that none of his kids are around, other than Darsih the fulltime care giver that was assigned to be with him all day.
I need to focus in getting over this hurdle of gastric pains and fatigue and Insya Allah, by Wednesday or Thursday I hope to be able to visit him, if he is still in hospital or at the Nursing Home, if by Allah's grace he has been discharged. I am truly upset that none of my other siblings have made an effort to go visit and be there for him or even discuss about how together we can come up with a plan to make sure someone is there.
It has always been my role to initiate, organise and plan and I ve never complained. However, when I am indisposed like this and very, very sensitive to unthoughtful remarks concerning my dad, I know better than to be a hero as it will affect me in more ways than one. He is our father for goodness sake and he is not well and someone needs to be around him just for reassurance. As far as I know none of us have a life and death duty here in KL that we couldn't leave behind for a short while to give a quick visit. I would go as my friend would drive me but I know my dad will be discouraged if he sees me in pain and looking pathethic like right now. I would wait for Thursday when I hope to be feeling better and able to motivate my dad. And beware the first person to call me then to ask how is dad?
I spent all day at home venting to friends about my situation and reading the Sunday papers. Some friends dropped by to help finish up the birthday cake and had dinner with me. I need to whet up an appetite as the tastebuds are on strike again and everything tasted bitter and awful and the strange after taste in my mouth did not help my moods at all.
What a timing to be faced with this dilemma. Which needn't be a dilemma if my siblings have been more responsive to my dad's needs. What had happened to them, how did they change, did having their won family change them? I would have thought that being fathers themselves they would need to set a good example to their own children? What values are they imparting to the kids? I know for a fact that number one sibling, with due respect to his highly placed station in life as a retired university lecturer, is sitting at home as both husband and wife have taken on the role of minding for a grand daughter. "Our priorities have changed, we have a grand-daughter now" was what they told us last year when we commented that they had never visited my dad at all since September 2005. What kind of b.....remark and excuse is that?
I am so upset and vented with friends. As if to comfort me they shared that they are in the same situation. We were so, so , so close before and things changed after Emak left us. According to my friends, friends are more responsive than siblings and relatives. But in my case, I am not expecting them to do anything for me, I was just hoping that all the kids will share in their role and responsibilities to make our parents' golden years happy. Dad is in hospital, can they not visit? Is that too difficult?
This is just an example of some of the cobwebby thoughts lurking in my mind that have been a real challenge to manage. What if I am no longer around, who would respond to my dad's call for attention. They will be the first one to visit him if they need anything from him, but when he needs them where are they???????????
Deep breath.....suck in air......deep breath....Ya Allah, please grant me the patience and the strength to manage this my way, and Ya Allah, please show me the way for You are all knowing. Forgive me for venting out over my siblings but You know our story and may You open up their hearts and mind that our father needs them too....As far as I know, none has contacted the hospital or the Nursing Home to find out how dad is doing. What is wrong with them?
I really need to relax so as not to aggravate my acid stomach. And I really need to focus my mind so as not to be sick and throw up, not because of the chemo drugs but due to this very testing situation.
Saturday, July 7, 2007
Day 3 - Cycle 5 (07-07-07)
July 7 ( day 3 of cycle 5)
The side-effects are beginning to be apparent- the tiredness and fatigue. No mood to go out but forced myself to walk to the shops nearby to get the morning papers. By the time I got back to the house, I was tired and was ready to just sink into the sofa.
I had my usual breakfast of soft boiled eggs and toast, followed by the anti-nausea medication. I made sure I took some psyillium husks too and bananas in an effort to avoid another round of constipation as a result of the Emend. I rested while reading the papers. I wasn't really up to watching dvds, so listened to some Gamelan music to chill out.
I received a text from the Manager of the Nursing Home where my dad is at about 3 pm or so. My dad had complained of chest pains and although he was reluctant, Jenny arranged for him to be rushed to the hospital. My dad is now warded and is being supplied with oxygen as the doctor assessed that his heart is causing him to be breathless. He must be worried about me, and I feel really down that I couldn't zoom over as I would normally do to be with him. I passed the text on to my siblings here and have not heard back from them.
I spoke to Jenny and she said not to worry, she will arrange to have a nurse or one of her staff by my father 24 hrs. My dad does not like being in the ward alone, and in the past one will accompany him. I am not in a position to do so right now, and so are my siblings who have children and grandchildren to take care of. I told Jenny I should be fine and less sickly by day 5 and my friend RJ have offered to drive me whenever I need to go. I don't think I can drive the 2 hours to the hospital in my condition and I really appreciated her offer. It's incredible that at times like this, my friends are more receptive to the occassion than my own siblings and relatives. Is my family strange or what? I know better than to suggest anything as I get annoyed very easily if someone says the wrong things that shouldn't be said when it comes to family matters, especially involving parents.
I tried to speak to my dad on the phone but he couldn't hear me, so we exchanged sms via the carer's phone. He said not to worry and that I must take care of my health and get better soon. I told him not to worry about me as I have good doctors, and that he should relax and be tenang. He is still on oxygen and sound breathless, but he couldn't hear a thing I was saying. I pray hard that he will be fine, my sister and niece from the UK will be arriving the week of July 16 and we are planning a surprise for his 89th birthday on July 25.
Ya Allah, I seek your mercy and compassion to make me strong so that I can focus in getting myself feeling much better. Please grant me the faith to trust that the people looking after my father has your blessings to give him the best care he deserves so that he will be fine again. Thank you Ya Allah for listening to my prayers and doa. You are most compassionate and most merciful. Syukur Alhamdullillah.
Friday, July 6, 2007
Day 2 Cycle 5 - Birthday In Situ At Home
July 6 (Day 2 of Cycle 5)
I woke up very thankful to the Almighty that I am feeling fine today which marks another year as a, I hope, useful human being. My Onco popped in to check how I was doing and confirmed that I should be fine and was going to give me some sleeping tablets if I need to cope with sleep better. I declined as so far, syukur Alhamdullillah, I have been sleeping quite well. He reminded me about the warm compresses so that we should be prepared for the 6th cycle in 21 days time.
I received a lot of text messages from my friends and close siblings and their kids wishing me happy birthday. A friend and her son surprised me with a visit in the morning and God Bless her, she brought some gifts that will make my planned trip to Bali "complete" - a floppy hat to cover my bald scalp in case I forget!
I was able to drive home slowly and did not attempt to make any detours along the way. I just can't wait to get home. We found Blackie the stray cat waiting for us, wondering where we had gone. He was limping, no cuts or wound but limping slightly. He must have been in a fight with the tiger-sized cat that belongs to my back neighbour, we call him Kuning. Kuning must have tried to pinch some of the food we put out for Blackie in the automatic feeder and Blackie must have put out a fight, and got whacked in return.
Vik sorted out the stuff from the hospital and I got myself organised for the side effects to surface. Despite the Emend, Novaban and Dexamethasone, I still felt queasy, so imagine if there weren't any aids. I felt like Bubur Kacang so Vik made some. My late Emak swore by Bubur Kacang for constipation, so I am trying that out as well. My nephew came by and stayed until maghrib. A close friend had dropped a dvd that I had been wanting to watch "An Inconvenient Truth" (The Al Gore effort) so at least I know I have something interesting to watch.
Some friends were planning to take me out to dinner to celebrate but I felt a bit tired to be out and about, so instead a few close ones came by with a cake and candles and we celebrated "in-situ" right at home. It makes me feel all warm inside knowing that they had come straight to my house after work and I did not have to feel alone on my birthday. Not that it is a grand occassion, but for me it is a day of thanksgiving, grateful to be alive and knowing there are people who cared enough. I miss my dad who would usually insist on a cake and pulut kuning if he is around, but alas.
Syukur Alhamdullillah for another year and Insya Allah, I pray for many more good years to come to be with those who have touched my life in meaningful ways.
I woke up very thankful to the Almighty that I am feeling fine today which marks another year as a, I hope, useful human being. My Onco popped in to check how I was doing and confirmed that I should be fine and was going to give me some sleeping tablets if I need to cope with sleep better. I declined as so far, syukur Alhamdullillah, I have been sleeping quite well. He reminded me about the warm compresses so that we should be prepared for the 6th cycle in 21 days time.
I received a lot of text messages from my friends and close siblings and their kids wishing me happy birthday. A friend and her son surprised me with a visit in the morning and God Bless her, she brought some gifts that will make my planned trip to Bali "complete" - a floppy hat to cover my bald scalp in case I forget!
I was able to drive home slowly and did not attempt to make any detours along the way. I just can't wait to get home. We found Blackie the stray cat waiting for us, wondering where we had gone. He was limping, no cuts or wound but limping slightly. He must have been in a fight with the tiger-sized cat that belongs to my back neighbour, we call him Kuning. Kuning must have tried to pinch some of the food we put out for Blackie in the automatic feeder and Blackie must have put out a fight, and got whacked in return.
Vik sorted out the stuff from the hospital and I got myself organised for the side effects to surface. Despite the Emend, Novaban and Dexamethasone, I still felt queasy, so imagine if there weren't any aids. I felt like Bubur Kacang so Vik made some. My late Emak swore by Bubur Kacang for constipation, so I am trying that out as well. My nephew came by and stayed until maghrib. A close friend had dropped a dvd that I had been wanting to watch "An Inconvenient Truth" (The Al Gore effort) so at least I know I have something interesting to watch.
Some friends were planning to take me out to dinner to celebrate but I felt a bit tired to be out and about, so instead a few close ones came by with a cake and candles and we celebrated "in-situ" right at home. It makes me feel all warm inside knowing that they had come straight to my house after work and I did not have to feel alone on my birthday. Not that it is a grand occassion, but for me it is a day of thanksgiving, grateful to be alive and knowing there are people who cared enough. I miss my dad who would usually insist on a cake and pulut kuning if he is around, but alas.
Syukur Alhamdullillah for another year and Insya Allah, I pray for many more good years to come to be with those who have touched my life in meaningful ways.
Thursday, July 5, 2007
Chemo # 5 - Day 1
July 5 ( D-day for Chemo #5, Day 1)
Syukur Alhamdullillah we managed to locate a small vein on the underside of my forearm ( "comel" the Onco nurse described it). My Onco was quite concerned and planned to have a warm compress on the forearm if no veins bulged out. As the vein was narrow extra caution was exercised to administer the drug and throughout I felt pain and discomfort and a very strong urge to be sick, but managed to control myself. Syukur Alhamdullillah the chemo was completed relatively smoothly, starting at 10 to 1 pm and ending just after 4. I was admitted for overnight observation and felt less stressed up knowing that help is at hand should I need it. I brought Vik my helper along with me and in fact, I drove to the medical center today, to the surprise of my friends.
I was at the center early to get my pre-chemo blood test done again. At 9 am the lab couldn't locate a vein that will release blood into the syringe. This time, they did not bother to prick more veins on my arm but went straight to my foot and we managed to get a decent sample even though it was painful. I was going to test the vampire style of sucking blood ie if they couldn't get any from my foot, the only sure place would be the jugular vein. Hopefully we will not have to resort to that ever, I am already seeing fangs right now.
I rested well in the ward. My friends came by with some snacks ( a Big Mac for which I had a sudden craving although dinner served was a nice grilled fish) and boiled chinese barley to cool and calm me down. I was feeling hot and perspiring even though the airconditioner was at it's lowest. The stayed until about 8 pm and I tried to have an early night after the nurses checked my bp and indicated that it was a bit low. Again. It was the same the last time.
I thanked the Almighty for his blessing and compassion that saw me through the 5th chemo. All I need to do in return is to be strong and manage the usual side-effects. Michelle brought a powder that really worked for the sores in my lips, she bought it at a chinese sen-seh shop, it is supposed to be ground watermelon seeds, very bitter but minty. After 3 different assortment of cures, the sores seem to have eased up a little, syukur Alhamdullillah. The coconut juice, the gengigel, the orabase and the watermelon seeds powder-no, that is really 4 different cures. Glad they worked together and not backfire in my mouth.
Syukur Alhamdullillah we managed to locate a small vein on the underside of my forearm ( "comel" the Onco nurse described it). My Onco was quite concerned and planned to have a warm compress on the forearm if no veins bulged out. As the vein was narrow extra caution was exercised to administer the drug and throughout I felt pain and discomfort and a very strong urge to be sick, but managed to control myself. Syukur Alhamdullillah the chemo was completed relatively smoothly, starting at 10 to 1 pm and ending just after 4. I was admitted for overnight observation and felt less stressed up knowing that help is at hand should I need it. I brought Vik my helper along with me and in fact, I drove to the medical center today, to the surprise of my friends.
I was at the center early to get my pre-chemo blood test done again. At 9 am the lab couldn't locate a vein that will release blood into the syringe. This time, they did not bother to prick more veins on my arm but went straight to my foot and we managed to get a decent sample even though it was painful. I was going to test the vampire style of sucking blood ie if they couldn't get any from my foot, the only sure place would be the jugular vein. Hopefully we will not have to resort to that ever, I am already seeing fangs right now.
I rested well in the ward. My friends came by with some snacks ( a Big Mac for which I had a sudden craving although dinner served was a nice grilled fish) and boiled chinese barley to cool and calm me down. I was feeling hot and perspiring even though the airconditioner was at it's lowest. The stayed until about 8 pm and I tried to have an early night after the nurses checked my bp and indicated that it was a bit low. Again. It was the same the last time.
I thanked the Almighty for his blessing and compassion that saw me through the 5th chemo. All I need to do in return is to be strong and manage the usual side-effects. Michelle brought a powder that really worked for the sores in my lips, she bought it at a chinese sen-seh shop, it is supposed to be ground watermelon seeds, very bitter but minty. After 3 different assortment of cures, the sores seem to have eased up a little, syukur Alhamdullillah. The coconut juice, the gengigel, the orabase and the watermelon seeds powder-no, that is really 4 different cures. Glad they worked together and not backfire in my mouth.
Wednesday, July 4, 2007
Day 21 - Cycle 4 Round Up
July 4 ( Day 21 of Cycle 4)-Lots of Coconut Juice to drink (air kelapa)
Tomorrow is D-Day for Cycle 5. Cycle 5 on July 5, a day before I add another year to my already golden status. As I anticiapte a somehat challenging session ( the Onco nurses need to hunt for a "good vein" and then inject a drug to dilate them and clear the way for chemo drugs) I plan to be admitted overnight and not on a day basis as done earlier. I hope I can get away with the request for the doctor to reconsider the dosage if my lip ulcers are still bothering me. The red drug(Epirubicin) apparently is very "heaty" and cause ulcers. My Onco did acknowledge yesterday that the ulcers could be due to the increased dosage at cycle 4. I drank the juice from 2 whole coconuts as advised by friends who told me this can help reduce the heat in my body so that no fresh ulcers will appear.
How was the cycle 4 experience? Certainly vey different from previous cycles due to the increased dosage and the cumulative effects of the side effects. I am sure it will be different for different people based on their baseline health level and their ability to cope, so what I am journalising are the experiences that I went through and the lessons and learnings I get from them.
Pertinent points about Cycle 4:
Wbc count rather high - higher than baseline. 8.7 vs baseline of 6.4 and other interim counts ranging from 1.8-2.8.
Weight gain vs baseline - up 4 kgs (therefore average of 1 kg per cycle so far. All the steroid induced cravings and the need to eat well to maximise cell recovery during 3rd week post chemo.
Onco had prescribed increased dosage for 4th chemo , he upped Epirubicin dosage by 15%.
Given 2 doses of Neupogen during interim blood count (2.4) , sakit pinggang as a result.
Not given booster post 4th chemo as the relief Onco wanted to test if my system could cope and that my bone marrow could recover on its own.
Pre-chemo blood count yesterday showed quite a good count of 3.8 wbc, and if this is maintained and I am within the normal range of 4-11, chemo 5 can proceed tomorrow (assuming they can locate and open up channel in veins.)
Side effects - very different probably due to increased dosage. I felt weakened but refused to let body to wilt too much by the higher dose, so pushed myself to do all kinds of things like having a garage sale! How ever, my spirit was very low during the second week, and my appetite was affected somewhat but was successful in making sure some nutrients get in. Continued to have problems with bowel movement. Not that my bowels ain't moving, they move like clockwork every morning before or after suboh but it has been a daily excruciating experience probably caused by the constipation in cycle 2. I never did recover from the ravages of constipation. The doctor and everyone reminded me to drink up, which I tried to do although plain water now tastes awful and has to be supplemented with juices/flavours. An additional side effect for this cycle are painful mouth ulcers and blisters. The ones inside the outh are manageable as the Gengigel gargle nightly and after meals does help, so is the Gengigel gel to apply. However the ones on my lips just seem to grow deeper and bigger and very, very painful. The doctor prescribed Orabase which I have been applying every 3 hours after meals. Feels okay when the cream is freshly applied but the pain and tingling will stsrt again when the cream has been absorbed or swallowed. I shudder to think what will happen tomorrow when Epirubicin is administered and I am supposed to suck ice (yucks) to protect the lining of my mouth. What happens if the lining of my mouth and lips are already cracking up and painful, will it get worse? I don't even want to think about it now in case I lose some sleep tonite.
I received a number of encouraging sms from friends for me to be strong tomorrow after they hear about my blood being takem from my foot and not from my arm for the blood test yesterday.
I hope and pray the session tomorrow will go smoothly and that I get to rest awhile in the ward and go home the next day, if necessary. I remind myself always that Allah will test us up to the point of our capacity to manage, and Insya Allah, whatever happens tomorrow, I seek His guidance and compassion to grant me the strength to endure whatever challenges the session might bring.
Once I get through tomorrow, Insya Allah, there will be only one more cycle to go in 3 weeks time before I prepare myself for 5 weeks of daily radiation doses.
Ya Allah, please give me the courage and strength to turn up at the Medical center tomorrow and the resilience to tolerate the 3-4 hour process of making myself better while comfronting the treatment. Please guide my Onco and the Onco staff to handle me gently and that they will be able to locate a good vein that will be ready to recieve the chemo drugs that will help my body in its fight against those unseen mutant cells. Amin.
Tuesday, July 3, 2007
Day 20 - Pre-chemo blood test
July 3 (Day 20 of cycle 4)
It is day 20 and July 3, the day that I am supposed to turn up for the pre-chemo blood test to check my count since I did not do the normal interim count that was scheduled on June 22. I did not go at 9 am per the appointment time as I learnt that after the blood test, I had to wait at least 3 hours before I get to see my Onco as he always has a crowd waiting to see him. I decided to go close to noon, so that I only have to wait an hour or so to see him when the results come out. By noon or so, he would have seen all the patients who are scheduled for chemo on that day. It took me 4 cycles to realise this and I could have used the time running other errands.
As it turned out, this time it took the nurses at the lab quite some time to locate a vein in my arm from which to draw blood. I was jabbed at 3 different spots (God, it was painful this time) and although they found a vein and tried to suction out some blood, nothing was drawn into the syringe. I hope my veins have not completely closed up like a blind tunnel! After the 3 attempts they gave up and we decided to go for my foot!
My feet look typical of those belonging to someone in their golden age. It seems with botox and all, the face can look "young" and to tell the true age and experience of someone is not to look for wisdom lines in their faces but to look at the raised veins on their hands and feet. For me, the ones in my right hand are hiiden due to water retention and thrombophlebitis. The ones on my feet are yelling "use me, use me..!". I was worried that the needle might hit a bone in my feet as the feet has the most number of bones in our body and I fear that the nurses might hit one and break a needle. They sprayed something cool on the spot they were going to puncture and very soon, they were able to draw the minimum required to be tested. What a relief. I can't imagine where else they could jab to get blood if they couldn't get it from my feet.
I saw my Onco at about 1 pm and he said my blood count is good, 3.8. He said as long as I eat well leading up to July 5 I should have a good count for the chemo. He did suggest as a precaution in case it dips due to an infection in the next 2 days for me to get just one shot of Neupogen. My back twitched when he said that and I told him tak nak, as I get back pains and am curious to see if my body can manage the next chemo without chemical aid. I have to learn to be less dependent on chemical aids now that in 6 weeks time, my system have to cope totally on its own after the final chemo cycle. He said ok, then to be very sure that I eat really well for my blood.
After having said that, I showed him the ulcers on my lips and him that Gengigel from my dentist works well for ulcers on the tongue and in my mouth but not for lip ulcers which continue to expand and hurt like hell. He presribed something called Orabase that I need to apply thinly on my lips and I must not rub it into the sore, just slap on a thin layer and leave it to stick and blend to my tissues.
I met up a fellow cancer survivor for lunch ( or coffee rather as I can't eat with Orabase on my lips) and we talked about the upcoming convention as she was going to present a paper. She went back to work while I stayed behind to attend the launching of the Breast Care Center at the medical center. Datuk Seri Sharizat Jalil officiated and it was indeed a meaningful occassion as this will be the first all-in-one Breast Care Center in Malaysia. A private charity donated a goodie bag to invited cancer patients which contained thoughtful gifts which include among others an MP3 player with inspiring music and motivational messages that have been downloaded.
I didn't stay for the hi-tea to join in the small talks as I can't even talk properly, let alone smile. I did make many new friends while waiting for Sharizat to arrive and we will be trading stories via sms or at future events in BCWA. I met a motley crowd of survivors, ranging from 1 year-30 years survivorship. And their tips vary that I end up telling myself that no 2 survivors are the same and at the end of the day, one must have faith to be well and the mind and faith can team up against any invaders, seen or unseen. One lady told me to pantang durian, another said no pantang and she had been eating durians, have survived more than 18 years and did not even do chemo, just radiation. One said she was a stage 1, small lump and no lymph affcted lymph nodes and at 40 could get away without chemo. I had a similar prognosis, but because I am menopausal and in my golden years, chemotherapy is highly recommended.
I realise that it I talk to too many people I will end up confused and disheartened. Of course to be fair, I wouln't have met those who did not do chemo and who did not pantang and who succumbed to the disease even after 2 of the 3 adjuvant treatment. I then decided to chat with people I met about other things.
I had to leave early as my nephew was coming by and I had taken the key to the front gate along. I told my helper this is because I didn't want her to admit into my house any conman who would claim to be my relatives as she is still new. Dinner was kacang botol, fish gulai and soup tulang, with lots of semi-fresh dates apparently also good for blood. Another survivor friend recommended Pisang Emas, which apparently helps with blood count. Must go get some so that Insya Allah, I will be on schedule for the 5th chemo on 5th July.
It is day 20 and July 3, the day that I am supposed to turn up for the pre-chemo blood test to check my count since I did not do the normal interim count that was scheduled on June 22. I did not go at 9 am per the appointment time as I learnt that after the blood test, I had to wait at least 3 hours before I get to see my Onco as he always has a crowd waiting to see him. I decided to go close to noon, so that I only have to wait an hour or so to see him when the results come out. By noon or so, he would have seen all the patients who are scheduled for chemo on that day. It took me 4 cycles to realise this and I could have used the time running other errands.
As it turned out, this time it took the nurses at the lab quite some time to locate a vein in my arm from which to draw blood. I was jabbed at 3 different spots (God, it was painful this time) and although they found a vein and tried to suction out some blood, nothing was drawn into the syringe. I hope my veins have not completely closed up like a blind tunnel! After the 3 attempts they gave up and we decided to go for my foot!
My feet look typical of those belonging to someone in their golden age. It seems with botox and all, the face can look "young" and to tell the true age and experience of someone is not to look for wisdom lines in their faces but to look at the raised veins on their hands and feet. For me, the ones in my right hand are hiiden due to water retention and thrombophlebitis. The ones on my feet are yelling "use me, use me..!". I was worried that the needle might hit a bone in my feet as the feet has the most number of bones in our body and I fear that the nurses might hit one and break a needle. They sprayed something cool on the spot they were going to puncture and very soon, they were able to draw the minimum required to be tested. What a relief. I can't imagine where else they could jab to get blood if they couldn't get it from my feet.
I saw my Onco at about 1 pm and he said my blood count is good, 3.8. He said as long as I eat well leading up to July 5 I should have a good count for the chemo. He did suggest as a precaution in case it dips due to an infection in the next 2 days for me to get just one shot of Neupogen. My back twitched when he said that and I told him tak nak, as I get back pains and am curious to see if my body can manage the next chemo without chemical aid. I have to learn to be less dependent on chemical aids now that in 6 weeks time, my system have to cope totally on its own after the final chemo cycle. He said ok, then to be very sure that I eat really well for my blood.
After having said that, I showed him the ulcers on my lips and him that Gengigel from my dentist works well for ulcers on the tongue and in my mouth but not for lip ulcers which continue to expand and hurt like hell. He presribed something called Orabase that I need to apply thinly on my lips and I must not rub it into the sore, just slap on a thin layer and leave it to stick and blend to my tissues.
I met up a fellow cancer survivor for lunch ( or coffee rather as I can't eat with Orabase on my lips) and we talked about the upcoming convention as she was going to present a paper. She went back to work while I stayed behind to attend the launching of the Breast Care Center at the medical center. Datuk Seri Sharizat Jalil officiated and it was indeed a meaningful occassion as this will be the first all-in-one Breast Care Center in Malaysia. A private charity donated a goodie bag to invited cancer patients which contained thoughtful gifts which include among others an MP3 player with inspiring music and motivational messages that have been downloaded.
I didn't stay for the hi-tea to join in the small talks as I can't even talk properly, let alone smile. I did make many new friends while waiting for Sharizat to arrive and we will be trading stories via sms or at future events in BCWA. I met a motley crowd of survivors, ranging from 1 year-30 years survivorship. And their tips vary that I end up telling myself that no 2 survivors are the same and at the end of the day, one must have faith to be well and the mind and faith can team up against any invaders, seen or unseen. One lady told me to pantang durian, another said no pantang and she had been eating durians, have survived more than 18 years and did not even do chemo, just radiation. One said she was a stage 1, small lump and no lymph affcted lymph nodes and at 40 could get away without chemo. I had a similar prognosis, but because I am menopausal and in my golden years, chemotherapy is highly recommended.
I realise that it I talk to too many people I will end up confused and disheartened. Of course to be fair, I wouln't have met those who did not do chemo and who did not pantang and who succumbed to the disease even after 2 of the 3 adjuvant treatment. I then decided to chat with people I met about other things.
I had to leave early as my nephew was coming by and I had taken the key to the front gate along. I told my helper this is because I didn't want her to admit into my house any conman who would claim to be my relatives as she is still new. Dinner was kacang botol, fish gulai and soup tulang, with lots of semi-fresh dates apparently also good for blood. Another survivor friend recommended Pisang Emas, which apparently helps with blood count. Must go get some so that Insya Allah, I will be on schedule for the 5th chemo on 5th July.
Monday, July 2, 2007
Day 19 - Ulcers and Blisters
July 3 (Day 19 of cycle 4)
The ulcers have migrated from the top of my lower lip to it's base and the nerve ends must have hit the nerve ends of my gums that the pain is not unlike a nagging toothache. I often bit my lower lip by accident, and when this happens when there is a growing ulcer on the exact spot where my teeth landed, a piercing scream could result, no matter if I am in the privacy of my won dining table or in the middle of a busy restaurant. Which is exactly what happened on Monday afternoon when I was in this busy restaurant in Bangsar!
My veins in the right forearm are still hard and stiff and it is quite worrying. How will they administer the chemo drugs on Thursday if they cannot locate a vein too. Will I then have to get a chemo port done jsut for 3 more cycles, and be subject to another op and a round of anasthesia. The thought is more daunting than the anticipated pain that I know will be part of the deal when the drugs course through my hardened veins, just like at the 4th chemo.
I realised today that while I have confirmed our travel dates for Bali and that my friend from Sydney will be able to meet up with us there, I will be missing a very interesting International convention right here in KL for Cancer Survivors and Care Givers, organised by the BCWA. What a shame. I had read about the International Congress on Breast Cancer and Colorectal Cancer during the same period and understood that participants are those in the health care business, discussing the latest in the field of medicine relating to the 2 ailments. What I did not realise is that BCWA is also organising around the same time a convention for International Cancer Survivors to meet up and have round table discussions and a sharing of experiences. One of my cancer buddies will be presenting a paper on treatment options and costs, from a cancer perspective and my breast surgeon will lead a round table discussion on Shopping for Doctors.
Life is about making choices and the right decisions, based on best information available. The perfect scenario for me would be go to Bali and attend the convention upon return, or attend the convention and then go to Bali to chill out. As it turns out, the airtickets and hotel can be confirmed around the dates I had chosen, not earlier and not later, with 5 of us trying to get a mutually convenient date. If I were to pull out, 4 others will be affected and I don't have the heart to cancel it especially since I ave got everyone quite excited over the trip. My assurance is that some people I know will be attending and I could gather how the event turned out. I am sure it will be generously covered by the media as Breast Cancer is receiving a lot of attention, and a lot of research and business activities revolve around it.
I have made the decision, and I have convinced myself it is the right one to spend some time with my siblings, as ridiculous though it may sound, it has not always been easy to find a suitable time to go holiday together. Conventions come and go and there will always be similar arrangements in future, and I don't know what God's plans are and if I will be around to enjoy a good holiday with close family members if I wait for "the next time". I am sure they will be other opportunities to meet up with survivors from all over the globe and trade experiences and tips, but the way things turn out, it must be part of God's plan.
We will celebrate my dad's birthday at the end of July and spend a few days with him at home in Melaka while my sister and niece are around. Hopefully we can spend some time to get the plan about planting dragonfruits to gel a bit more. It is beginning to sound very interesting....and promising, Insya Allah. I am already visualising me giving baskets and hampers of bright red dragon fruits to friends and family, all country grown in an organic way. Insya Allah, this "Naga Saga" will materialise if enough heads are equally committed. I am not going to be the old me who will be 133% enthusiastic about things and ended up shouldering the burden and responsibilities alone! Will need to test the interest barometer for sharing both the hard work. No need to test the barometer on who will be happy to share in the output and produce, there will be many, based on past experience.....
The ulcers have migrated from the top of my lower lip to it's base and the nerve ends must have hit the nerve ends of my gums that the pain is not unlike a nagging toothache. I often bit my lower lip by accident, and when this happens when there is a growing ulcer on the exact spot where my teeth landed, a piercing scream could result, no matter if I am in the privacy of my won dining table or in the middle of a busy restaurant. Which is exactly what happened on Monday afternoon when I was in this busy restaurant in Bangsar!
My veins in the right forearm are still hard and stiff and it is quite worrying. How will they administer the chemo drugs on Thursday if they cannot locate a vein too. Will I then have to get a chemo port done jsut for 3 more cycles, and be subject to another op and a round of anasthesia. The thought is more daunting than the anticipated pain that I know will be part of the deal when the drugs course through my hardened veins, just like at the 4th chemo.
I realised today that while I have confirmed our travel dates for Bali and that my friend from Sydney will be able to meet up with us there, I will be missing a very interesting International convention right here in KL for Cancer Survivors and Care Givers, organised by the BCWA. What a shame. I had read about the International Congress on Breast Cancer and Colorectal Cancer during the same period and understood that participants are those in the health care business, discussing the latest in the field of medicine relating to the 2 ailments. What I did not realise is that BCWA is also organising around the same time a convention for International Cancer Survivors to meet up and have round table discussions and a sharing of experiences. One of my cancer buddies will be presenting a paper on treatment options and costs, from a cancer perspective and my breast surgeon will lead a round table discussion on Shopping for Doctors.
Life is about making choices and the right decisions, based on best information available. The perfect scenario for me would be go to Bali and attend the convention upon return, or attend the convention and then go to Bali to chill out. As it turns out, the airtickets and hotel can be confirmed around the dates I had chosen, not earlier and not later, with 5 of us trying to get a mutually convenient date. If I were to pull out, 4 others will be affected and I don't have the heart to cancel it especially since I ave got everyone quite excited over the trip. My assurance is that some people I know will be attending and I could gather how the event turned out. I am sure it will be generously covered by the media as Breast Cancer is receiving a lot of attention, and a lot of research and business activities revolve around it.
I have made the decision, and I have convinced myself it is the right one to spend some time with my siblings, as ridiculous though it may sound, it has not always been easy to find a suitable time to go holiday together. Conventions come and go and there will always be similar arrangements in future, and I don't know what God's plans are and if I will be around to enjoy a good holiday with close family members if I wait for "the next time". I am sure they will be other opportunities to meet up with survivors from all over the globe and trade experiences and tips, but the way things turn out, it must be part of God's plan.
We will celebrate my dad's birthday at the end of July and spend a few days with him at home in Melaka while my sister and niece are around. Hopefully we can spend some time to get the plan about planting dragonfruits to gel a bit more. It is beginning to sound very interesting....and promising, Insya Allah. I am already visualising me giving baskets and hampers of bright red dragon fruits to friends and family, all country grown in an organic way. Insya Allah, this "Naga Saga" will materialise if enough heads are equally committed. I am not going to be the old me who will be 133% enthusiastic about things and ended up shouldering the burden and responsibilities alone! Will need to test the interest barometer for sharing both the hard work. No need to test the barometer on who will be happy to share in the output and produce, there will be many, based on past experience.....
Sunday, July 1, 2007
Days 16, 17, 18 , - Technical Hitches
The last four days ( today inclusive) have been rather hectic and it didn't help one bit when my dialup connection to tmnet did not work. After numerous phone calls and investigative tests, we got it sorted out. My phone cable was kaput and I had to go out to buy a replacement to drag from the phone socket to the laptop on my desk. No one from tmnet was, alas , able to pinpoint the problem and I had thought that my laptop was kaput. It was only when that nice guy Alan at the SHC Pineapple store tested my laptop using their phone line that it was thankfully confirmed that my laptop is okay but not my phone cable. What a relief. It has also been a hectic 4 days so have not been able to hang out at Starbucks to catch up on emails. My mailbox was full when I finally logged on today.
June 29 (Day 16 of cycle 4)
My phone cable must have "died" on this day. I spent sometime seeking assistance from the tmnet call center but no one could pinpoint the problem. That was a real bummer as I was planning to surf the net for good deals to Bali to chill out after my last chemo and was going to go with my sis, her daughter and my brother. A friend from Sydney was planning to join us in Bali if the timing is right. As it turned out I spent the whole afternoon at my travel agent nearby and finally got all that sorted out. I am assuming and hoping that I will be fit for travel after my last chemo on July 27 and the ensuing 21 days after will be treating me kindly.
Other than the bowel "problem" and some blisters (on my lips now and therefore more torturous as it hurts even when I talk and move my lips), I am quite pleasantly surprised that I am coping rather well without any boosters prior to the 5 th cycle. Not yet anyway. I will find out when I go for another pre-chemo blood test on Tuesday July 3, 2 days before the scheduled 5th chemo.
My childhood friend came by to visit and shared photos of recent holidays in Russia and we went for dinner at Aji Don in P.Damas as Fridays is a day for good Mee Rebus Tulang. I need all the beefy goodness and it was good.
June 30 (Day 17 of cycle 4)
Today is all about my trip to Melaka, courtesy of my friend and her son, to whom I have sold my Acer desktop for Rm10! Since I haven't been to Melaka for a month or so, I shopped for some stuff to bring back, and to take to my Dad when I visit him. Also, the stock for catsupplies are running low according to my brother, so my friend's MPV was stacked with a bumper supply of catfood and cat litter for the ones in the big cage.
As it turned out we had a bit of an adventure as my friend's car had turned cranky over the last week and it's mood did not improve during the journey. It will not reverse when the reverse gear is set nor will it start if the engine is turned off for a while. So it was AAM and phone calls and all kinds of tricks. The funny thing is while waiting for AAM, it decided to move.
We have our hearts in our mouth throughout the journey. Syukur Alhamdullillah we managed to get to Melaka without any hitches as we took care not to switch off the engine, even when we stopped enroute for refreshments. It was rather late by the time we got to my house in Melaka and the first thing we did was to call in my regular mechanice there to take a look at the engine. It seems the transmission fluid was drained and while this an be easily topped up in the short term, the mechanice advised my friend to take her car in to her regular garage for a complete check.
It was late by the time we got to the workshop for the mechanic to top up the transmission fluid. We went to P.Balak for dinner by the sea, just to unwind after quite a tensed experience during the day. It was simply lovely to see my babies again and I have to wait until tomorrow to visit my dad to see how he is getting on.
July 1 (Day 18 of cycle 4)
We went to the Pasar Tani in Alor Gajah to get some more supplies. I got some red dragon fruit to take to my dad and some of his favourite kuehs ( kueh tepong talam and seri muka pandan). We decided that it may not be a good idea to stress up my friend's car further and save her for the return trip to KL. We were fortunate that my friend RJ had also made a change of plan that will see her coming home to Melaka to visit her parents and son and she had offered to drive us to visit my dad.
We stopped for lunch at the ever popular Ikan Bakar place at Cheng Heights and really od'ed on the fish - 3 types! I saw so many mouthwatering but spicy typical gulai kampung. There was Asam Pedas Ikan Pari ( a no-no), Asam Pedas Tetel ( another no-no as this is spicy and comprise of tasty unmentionables from the cow - assorted meats and tendons and fatty bits) and of course different kinds of gulai lomak cili api ( a BIG NO-NO) of ketam, ikan sembilang, ayam kampung and pucuk paku. Simple and delicious. As the pain of gastritis was still very fresh in my mind, I managed to will myself to not touch the assorted sambals and cili api and focussed on the Ikan Bakar and ulam-ulam.
My dad was having a nap when we got there. He looked fine but frail and seemed to have a lot on his mind. His face lit up when he saw the kuehs and dragon fruits but was too full as he had just had durians (!!). He is still very keen to start a dragon fruit plot and showed me the article that he read on it and it struck me as a viable project that now perked my interest. The cactus like plant will start bearing fruit after just 8 months, even shorter than a pregnancy! Hmmm, something worthwhile to pursue with a little bit more knowledge on the steps involved.
I decided to show off my current "look" and be real blase about it in front of my dad. I took off my scarf and showed him my head and told him I am okay with this as I know that by the 6th month after chemo, Insya Allah I should have a head of hair growing again. He seemed to handle it well especially when he sees that the "look" wasn't bothering me either. His 89th birthday is approaching soon and he asked if my sister from the UK is coming back this year. We always have a cake for him and pulut kuning with curry for family members, taking care to cook extra as cousins and relatives would also drop by. He will enjoy staying with us for a couple of days then, and this time around it will be a few days before my final chemo.
Something bugged me after the visit. It seems one of the kampung folks had visited him and mentioned that his payments were overdue (which is not correct as he is up to date) and was going to offer to take him to the bank for him to draw his money out. Thank God my dad was quite cautious and alert and told him that he had just paid. I am still wondering how I should handle this - get involved and find out why that had to take place or just keep out of it but strongly advise my dad not to go to the bank to draw his money out unless accompanied by his own children or trustworthy relatives.
We left for KL soon after RJ sent us back to my house. On the way we stopped by her place (she has a lovely house right in the middle of a 3 acre dusun) for durians-loads of it! I have been told durians and cancer don't agree, so I just sampled 3 "ulas" (lumps??) and drank lots of air suam with a pinch of salt to nullify the "heatiness", or so it seems.
The trip back was another tensed ride - we were so scared that the car might stall along the highway, with the cargo of desktop, shopping from the Pasar Tani and some durians that RJ had packed for my friend's son. In a way, it was a blessing in disguise that I have blisters over my lips and tongue or else I will be blissfully slopping over the exotic/authentic durian kampungs. My helper managed to "harvest" some bunga kantan, cili padi, bananas and rambutans to bring to KL. She had actually climbed up the tree to get to the ripened ones as most of the fruits are still green.
I was totally zonked out when we reached KL. There was a steady stream of traffic on the road all the way to KL and at places we were caught in a crawl but thankfully the car held on.
In Melaka, we have been eating out so I was not able to get my diet of kacang botol (cooked) and rebusan tulang but I pray that my blood count will be okay on July 3, that I will not need boosters and that my 5th chemo will go on schedule. I hope my blisters will be sorted out by then as I have been patiently applying the Gengigel gel that is supposed to accelerate healing of tissues in the mouth and gums. Having nausea and loss of appetite will be a real challenge if the blisters do not ease up as it will make feeding my system more difficult. I am also beginning to be concious of twitchings ( sometimes a wee bit stinging) in my surgery area and I hope it is part of the healing process. I will ask my breast surgeon when I see her next if it is normal or something that needs further investigation. Cancer exposes me to different kinds of pain that before I might have taken lightly, not knowing that such sufferings can be a major source of discomfort . But Insya Allah, are part of the temporary tests and dugaan.
June 29 (Day 16 of cycle 4)
My phone cable must have "died" on this day. I spent sometime seeking assistance from the tmnet call center but no one could pinpoint the problem. That was a real bummer as I was planning to surf the net for good deals to Bali to chill out after my last chemo and was going to go with my sis, her daughter and my brother. A friend from Sydney was planning to join us in Bali if the timing is right. As it turned out I spent the whole afternoon at my travel agent nearby and finally got all that sorted out. I am assuming and hoping that I will be fit for travel after my last chemo on July 27 and the ensuing 21 days after will be treating me kindly.
Other than the bowel "problem" and some blisters (on my lips now and therefore more torturous as it hurts even when I talk and move my lips), I am quite pleasantly surprised that I am coping rather well without any boosters prior to the 5 th cycle. Not yet anyway. I will find out when I go for another pre-chemo blood test on Tuesday July 3, 2 days before the scheduled 5th chemo.
My childhood friend came by to visit and shared photos of recent holidays in Russia and we went for dinner at Aji Don in P.Damas as Fridays is a day for good Mee Rebus Tulang. I need all the beefy goodness and it was good.
June 30 (Day 17 of cycle 4)
Today is all about my trip to Melaka, courtesy of my friend and her son, to whom I have sold my Acer desktop for Rm10! Since I haven't been to Melaka for a month or so, I shopped for some stuff to bring back, and to take to my Dad when I visit him. Also, the stock for catsupplies are running low according to my brother, so my friend's MPV was stacked with a bumper supply of catfood and cat litter for the ones in the big cage.
As it turned out we had a bit of an adventure as my friend's car had turned cranky over the last week and it's mood did not improve during the journey. It will not reverse when the reverse gear is set nor will it start if the engine is turned off for a while. So it was AAM and phone calls and all kinds of tricks. The funny thing is while waiting for AAM, it decided to move.
We have our hearts in our mouth throughout the journey. Syukur Alhamdullillah we managed to get to Melaka without any hitches as we took care not to switch off the engine, even when we stopped enroute for refreshments. It was rather late by the time we got to my house in Melaka and the first thing we did was to call in my regular mechanice there to take a look at the engine. It seems the transmission fluid was drained and while this an be easily topped up in the short term, the mechanice advised my friend to take her car in to her regular garage for a complete check.
It was late by the time we got to the workshop for the mechanic to top up the transmission fluid. We went to P.Balak for dinner by the sea, just to unwind after quite a tensed experience during the day. It was simply lovely to see my babies again and I have to wait until tomorrow to visit my dad to see how he is getting on.
July 1 (Day 18 of cycle 4)
We went to the Pasar Tani in Alor Gajah to get some more supplies. I got some red dragon fruit to take to my dad and some of his favourite kuehs ( kueh tepong talam and seri muka pandan). We decided that it may not be a good idea to stress up my friend's car further and save her for the return trip to KL. We were fortunate that my friend RJ had also made a change of plan that will see her coming home to Melaka to visit her parents and son and she had offered to drive us to visit my dad.
We stopped for lunch at the ever popular Ikan Bakar place at Cheng Heights and really od'ed on the fish - 3 types! I saw so many mouthwatering but spicy typical gulai kampung. There was Asam Pedas Ikan Pari ( a no-no), Asam Pedas Tetel ( another no-no as this is spicy and comprise of tasty unmentionables from the cow - assorted meats and tendons and fatty bits) and of course different kinds of gulai lomak cili api ( a BIG NO-NO) of ketam, ikan sembilang, ayam kampung and pucuk paku. Simple and delicious. As the pain of gastritis was still very fresh in my mind, I managed to will myself to not touch the assorted sambals and cili api and focussed on the Ikan Bakar and ulam-ulam.
My dad was having a nap when we got there. He looked fine but frail and seemed to have a lot on his mind. His face lit up when he saw the kuehs and dragon fruits but was too full as he had just had durians (!!). He is still very keen to start a dragon fruit plot and showed me the article that he read on it and it struck me as a viable project that now perked my interest. The cactus like plant will start bearing fruit after just 8 months, even shorter than a pregnancy! Hmmm, something worthwhile to pursue with a little bit more knowledge on the steps involved.
I decided to show off my current "look" and be real blase about it in front of my dad. I took off my scarf and showed him my head and told him I am okay with this as I know that by the 6th month after chemo, Insya Allah I should have a head of hair growing again. He seemed to handle it well especially when he sees that the "look" wasn't bothering me either. His 89th birthday is approaching soon and he asked if my sister from the UK is coming back this year. We always have a cake for him and pulut kuning with curry for family members, taking care to cook extra as cousins and relatives would also drop by. He will enjoy staying with us for a couple of days then, and this time around it will be a few days before my final chemo.
Something bugged me after the visit. It seems one of the kampung folks had visited him and mentioned that his payments were overdue (which is not correct as he is up to date) and was going to offer to take him to the bank for him to draw his money out. Thank God my dad was quite cautious and alert and told him that he had just paid. I am still wondering how I should handle this - get involved and find out why that had to take place or just keep out of it but strongly advise my dad not to go to the bank to draw his money out unless accompanied by his own children or trustworthy relatives.
We left for KL soon after RJ sent us back to my house. On the way we stopped by her place (she has a lovely house right in the middle of a 3 acre dusun) for durians-loads of it! I have been told durians and cancer don't agree, so I just sampled 3 "ulas" (lumps??) and drank lots of air suam with a pinch of salt to nullify the "heatiness", or so it seems.
The trip back was another tensed ride - we were so scared that the car might stall along the highway, with the cargo of desktop, shopping from the Pasar Tani and some durians that RJ had packed for my friend's son. In a way, it was a blessing in disguise that I have blisters over my lips and tongue or else I will be blissfully slopping over the exotic/authentic durian kampungs. My helper managed to "harvest" some bunga kantan, cili padi, bananas and rambutans to bring to KL. She had actually climbed up the tree to get to the ripened ones as most of the fruits are still green.
I was totally zonked out when we reached KL. There was a steady stream of traffic on the road all the way to KL and at places we were caught in a crawl but thankfully the car held on.
In Melaka, we have been eating out so I was not able to get my diet of kacang botol (cooked) and rebusan tulang but I pray that my blood count will be okay on July 3, that I will not need boosters and that my 5th chemo will go on schedule. I hope my blisters will be sorted out by then as I have been patiently applying the Gengigel gel that is supposed to accelerate healing of tissues in the mouth and gums. Having nausea and loss of appetite will be a real challenge if the blisters do not ease up as it will make feeding my system more difficult. I am also beginning to be concious of twitchings ( sometimes a wee bit stinging) in my surgery area and I hope it is part of the healing process. I will ask my breast surgeon when I see her next if it is normal or something that needs further investigation. Cancer exposes me to different kinds of pain that before I might have taken lightly, not knowing that such sufferings can be a major source of discomfort . But Insya Allah, are part of the temporary tests and dugaan.
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