I have not update this blog for more than a month! Well, I can say that I've been quite occupied;
Raya or Eidul-Fitri was great! I feel so blessed to be able to celebrate it. Alhamdulillah.
Moved back home. I had mixed emotions leaving my parents' after almost 3 months. I can never thank them and my aunty enough for taking care of me, for their love, support and doa during my most difficult times. But it was time and it's good to be home!
Resumed my stay-home-mom/housewife role but things are not like before. My energy is still not quite there and I still get fatigued (Chemo's side effect). Thus, I need to eat every 2 hours, drink 2 litres of water, get 8 hours of sleep and take a nap when my body says "you're tired baby, go lie down" hehe or in other words, it gets achy or my eyes can't stay open. But the good side of this is, the priority is ME not the dishes, laundry and etc.
It has been 2 months after my treatment completed. Besides the fatigue, my ears are affected too. The right side is somewhat blocked from the sinus' fluid/mucus thus hearing can be a little limited. I can hear but when there are too much sounds/noises, it can get a little difficult to grasp. It doesn't quite bother me anymore and I hope those talking to me too. :) Dr Azrif and Dr Kuljit said this is due to the inflammations caused by RT. It may take up to 2 years before the sinus' fluid/mucus dries up.
My nerves are sensitive too these days, especially when it's cold. On rainy days, my skin would feel somewhat sore and also numb when anything brushes against it. For instance, the clothes I'm changing into. I guess this is an after effect of Chemo but I hope it'll go away.
I've gotten used to the dry mouth and my taste bud which is not quite back yet. Now, my husband helps to taste when I'm cooking but I'm also learning the new/different tastes. I've started taking very mild spicy or chilli infused food but with a glass of cold water in hand.
All these are still new to me. At times they do get me aka get me feeling down. But I'd tell myself and pray that I'll get pass it or probably get used to it. I try not to think that I'm not quite well but will listen to my body and prioritise my well being.
I did a nose scope about a month ago and Alhamdulillah the growth is gone. My full body PET CT-Scan is in 2 weeks and hopefully it'll confirm that I'm cancer free, Insyaallah.
Meanwhile, I'll try to complete my update on the treatments. ;)
Saturday, September 22, 2012
Thursday, August 16, 2012
Treatment Week 4 of 7 : Managing the Side Effects (and TheEmoBit :P)
Diet
The supposingly start of a sore throat or the lump in my throat that I felt in Week 3 vanished! Alhamdulillah. But I maintained the same diet. My taste bud started to get affected. I could only catch the dominant taste in the food/meal I took. If I had steamed fish with boiled veggies then I could only taste the fish and it would leave a strong aftertaste. Some food with mild taste like bread, crackers or fruits would be tasteless. My mouth got dryer too, so a lot of water was definitely necessary. I also developed acid reflux/heartburn due to Chemo. Even after taking Prevacid, there were times that it felt really uncomfortable and I would only feel better after I coughed out some of the food I had. Food and even water needed more time to settle than usual. I could take about 1 hour to finish a meal and 30 minutes for a glass of water. But at the same time I needed to eat frequently to beat the nausea. How about that? Eat and drink felt even more like work!
Oral Care
Since the throat got better, I stopped gargling with Difflam-C but continued with Normal Saline. Having the acid reflux/heartburn didn't make swallowing the UMF 15 Manuka Honey easier. There were times that I was forced to cough it out,disappointing indeed. But I would still took another teaspoon to ensure it was swallowed and kept inside!
Skin Care
Still on cold water, wet towel and Bio-Oil!
Oral Exercise
Did I still talk loudly? Not really. During this week, my physical condition was pretty stable but my mind sort of took over my body. I preferred to talk only when necessary. My mouth started to feel tight especially when I needed to open it wide like yawning. In addition, my sinusitis came back, phlegm started to build up and my nose would get stuffy especially while sleeping. But when the latter happened, I couldn't let myself breath through the mouth because it would get even more dryer! So how do I stay alive?! :) I would sleep without air-con and with the pillow upright, sometimes almost like I was sitting.
Energy
Getting weaker and I only left home for treatments. Being in the car would even tire me off.
TheEmoBit
Eventhough I was physically OK and halfway through the treatment, I complained and wished that it was Week 7. How ungrateful eh? Unnecessarily I thought too much about what may come in the coming weeks. I was overwhelmed by the changes to my body and the ritual I needed to take up as well as get used to it quickly, with the hope that my condition would not worsen. I tried to stay positive and distracted myself with funny tv shows/movies and entertaining my kid because she didn't treat me like I was sick. Praying and zikir helped a lot too but you got to believe it.
The supposingly start of a sore throat or the lump in my throat that I felt in Week 3 vanished! Alhamdulillah. But I maintained the same diet. My taste bud started to get affected. I could only catch the dominant taste in the food/meal I took. If I had steamed fish with boiled veggies then I could only taste the fish and it would leave a strong aftertaste. Some food with mild taste like bread, crackers or fruits would be tasteless. My mouth got dryer too, so a lot of water was definitely necessary. I also developed acid reflux/heartburn due to Chemo. Even after taking Prevacid, there were times that it felt really uncomfortable and I would only feel better after I coughed out some of the food I had. Food and even water needed more time to settle than usual. I could take about 1 hour to finish a meal and 30 minutes for a glass of water. But at the same time I needed to eat frequently to beat the nausea. How about that? Eat and drink felt even more like work!
Oral Care
Since the throat got better, I stopped gargling with Difflam-C but continued with Normal Saline. Having the acid reflux/heartburn didn't make swallowing the UMF 15 Manuka Honey easier. There were times that I was forced to cough it out,disappointing indeed. But I would still took another teaspoon to ensure it was swallowed and kept inside!
Skin Care
Still on cold water, wet towel and Bio-Oil!
Oral Exercise
Did I still talk loudly? Not really. During this week, my physical condition was pretty stable but my mind sort of took over my body. I preferred to talk only when necessary. My mouth started to feel tight especially when I needed to open it wide like yawning. In addition, my sinusitis came back, phlegm started to build up and my nose would get stuffy especially while sleeping. But when the latter happened, I couldn't let myself breath through the mouth because it would get even more dryer! So how do I stay alive?! :) I would sleep without air-con and with the pillow upright, sometimes almost like I was sitting.
Energy
Getting weaker and I only left home for treatments. Being in the car would even tire me off.
TheEmoBit
Eventhough I was physically OK and halfway through the treatment, I complained and wished that it was Week 7. How ungrateful eh? Unnecessarily I thought too much about what may come in the coming weeks. I was overwhelmed by the changes to my body and the ritual I needed to take up as well as get used to it quickly, with the hope that my condition would not worsen. I tried to stay positive and distracted myself with funny tv shows/movies and entertaining my kid because she didn't treat me like I was sick. Praying and zikir helped a lot too but you got to believe it.
Friday, August 10, 2012
Treatment Week 3 of 7 : Managing the Side Effects (and TheEmoBit :P)
Diet
Felt a small lump in my throat, like a sore throat was about to start. So, I stopped taking oily and spicy food to avoid it from getting worse. My mouth, tongue and throat were more sensitive. Everything with chilli tasted super hot! Aftertaste seemed to be enhanced, especially after having fish and garlicy food. I was still having rice but my fish and veggies were boiled, steamed or stir-fried. Guava after meals seemed to help with the aftertaste. I also started taking Ensure for more nutrient. Still on crackers, fruits and also breads/buns for nausea snacking. Water started to taste different too, probably due to the enhanced aftertaste but I made sure I took 8-10 glass of water everyday. Eat and drink seemed to be like a work.
Oral Care
Since a sore throat was about to start, I began gargling with Difflam-C Solution that was prescribed by Dr Azrif. But it was too strong and would leave my tongue feeling numb. So, I alternated it with Normal Saline. I brushed my teeth after every meal, to keep it clean and it helped to get rid of the aftertaste. I also started using electric toothbrush because the head is smaller and the bristles are softer. Normal toothbrush wasn't suitable anymore since my mouth was more sensitive thus prone to bleeding. To manage sore throat and ulcer, I began taking UMF 15 Manuka Honey as advised by Singapore's NPC Online Support Group. Actually it's suffice to take UMF 10 or 12 but I could only find UMF 15 from Elken. Anyways, I believe it has greatly helped me in preventing ulcer in the mouth, Alhamdulillah. I don't really like honey and this one is really thick! According to the support group, take a teaspoon (wooden or plastic, metal will kill the nutrient) then hold and spread it around the inside of the mouth before it is swallowed and don't drink or wash the mouth for at least 10 minutes. Hmmm, gag much? It sure felt like it! :) But since it has proven to be good, I am now at my fifth and final bottle. I took it after every meal (about 4-5 times per day) and at least once a day now.
Skin Care
Continued the same ritual; cold water, wet towel and Bio-Oil!
Oral Exercise
Still talked loudly :)
Energy
Slightly weaker than previous week and preferred to stay home.
TheEmoBit
Finally, I accepted that it's OK to be weak, let go and let myself to be helped and taken care. So, I went back to my old relaxed self but when the lump in the throat appeared, I started getting anxious about the side effects. Just liked I was told, things will get worst beginning Week 3. But, I psyched myself; I'll cross the bridge when I reach it and meantime I need to get used to the new ritual!
Felt a small lump in my throat, like a sore throat was about to start. So, I stopped taking oily and spicy food to avoid it from getting worse. My mouth, tongue and throat were more sensitive. Everything with chilli tasted super hot! Aftertaste seemed to be enhanced, especially after having fish and garlicy food. I was still having rice but my fish and veggies were boiled, steamed or stir-fried. Guava after meals seemed to help with the aftertaste. I also started taking Ensure for more nutrient. Still on crackers, fruits and also breads/buns for nausea snacking. Water started to taste different too, probably due to the enhanced aftertaste but I made sure I took 8-10 glass of water everyday. Eat and drink seemed to be like a work.
Oral Care
Since a sore throat was about to start, I began gargling with Difflam-C Solution that was prescribed by Dr Azrif. But it was too strong and would leave my tongue feeling numb. So, I alternated it with Normal Saline. I brushed my teeth after every meal, to keep it clean and it helped to get rid of the aftertaste. I also started using electric toothbrush because the head is smaller and the bristles are softer. Normal toothbrush wasn't suitable anymore since my mouth was more sensitive thus prone to bleeding. To manage sore throat and ulcer, I began taking UMF 15 Manuka Honey as advised by Singapore's NPC Online Support Group. Actually it's suffice to take UMF 10 or 12 but I could only find UMF 15 from Elken. Anyways, I believe it has greatly helped me in preventing ulcer in the mouth, Alhamdulillah. I don't really like honey and this one is really thick! According to the support group, take a teaspoon (wooden or plastic, metal will kill the nutrient) then hold and spread it around the inside of the mouth before it is swallowed and don't drink or wash the mouth for at least 10 minutes. Hmmm, gag much? It sure felt like it! :) But since it has proven to be good, I am now at my fifth and final bottle. I took it after every meal (about 4-5 times per day) and at least once a day now.
Skin Care
Continued the same ritual; cold water, wet towel and Bio-Oil!
Oral Exercise
Still talked loudly :)
Energy
Slightly weaker than previous week and preferred to stay home.
TheEmoBit
Finally, I accepted that it's OK to be weak, let go and let myself to be helped and taken care. So, I went back to my old relaxed self but when the lump in the throat appeared, I started getting anxious about the side effects. Just liked I was told, things will get worst beginning Week 3. But, I psyched myself; I'll cross the bridge when I reach it and meantime I need to get used to the new ritual!
 |
| UMF 15 Manuka Honey |
Thursday, August 9, 2012
Treatment Week 2 of 7 : Managing the Side Effects (and TheEmoBit :P)
Diet
Pretty much the same as before I started the treatments. But my family stopped me from taking chicken and beef. They were advised by many that both can cause cancer. I was too tired and more worried about other stuff than to argue. So it was mostly rice, fish/free-range eggs and veggies! Sometimes, pasta and noodle too. I could still enjoy my favourite sambal tumis ikan bilis, ikan belah belakang and char kuey tiaw Aunty Gemok. Eventhough, they are spicy and oily but my mouth and throat could still tolerate it. I had my crackers and fruits with me all the time, to beat the nausea. I was prescribed Dexa after every Chemo, a steroid for nausea but only for a couple of days. But I seemed to have nausea all the time during the 5 weeks that I did Chemo. I think, I was the only patient then that came for treatments with a bag full of snacks and a bottle of water, at least until mid Week 5 when I still could munch. :)
Update: As advised by the nurse at Oncology Daycare, I took a lot of spinach to ensure my Hemoglobin was within range when I needed to do Chemo. Actually there are other food sources but spinach was my favourite and probably the only food that I like or could eat for this purpose. I continued having it even after my Chemo ended in Week 5 and up till one week after the RT was over. Since I had too much of it, I now prefer other veggies. :)
Oral Care
I switched to gargling with 0.9% w/v Sodium Chloride Irrigation Solution or in simple words, Normal Saline. :) After every meal or snack! I was still getting used to this new routine that was pretty troublesome especially when you need to eat frequently.
Skin Care
Switched to just running cold water and wet cloth to dap. A family friend who was a NPC survivor advised to apply Bio-Oil to prevent severe scaring. I did, twice a day after every wash.
Oral Exercise
I have to admit that I stopped doing the exercises by then.
But continued to talk loudly/shout to my kid and hubs when necessary. :P
Energy
Weaker. I started taking naps and would prefer to shut my eyes while in the car, especially after my RTs. During the weekend, I joined hubs and kiddo at the park but I couldn't catch up with their speed. I needed to sit and rest after walking for a while. Never was that weak. Nonetheless, being out was good.
TheEmoBit
I was still worried about troubling my parents and family as well as if hubs and kiddo were doing alright with the new arrangement. It was a little stressful, very unnecessary!
 |
| 0.9% w/v Sodium Chloride Irrigation Solution |
 |
| Bio-Oil |
Treatment Week 1 of 7 : Managing the Side Effects (and TheEmoBit :P)
As mentioned in my earlier posts, I found out more about the side effects and learned on how to manage them from a couple of NPC patients/survivors as well as an online support group. Nurse Zuraida who took my temperature and blood pressure everyday was always reminding me on diet, oral and skin care. She was my cheerleader even more when my spirit was low. I heart and miss her. :)
I learned that skin peeling, sore throat and mouth ulcer usually begin between Week 3 and 4 of treatment. But that wasn't exactly the case for me. My skin only started to really dry up on the final Week 7 and peeling was for a week after the treatment completed. My sore throat only started to get bad, which forced me to only take soft and bland diet, in the middle of Week 5. It lasted until the week after my treatment completed. Alhamdulilah, I didn't have any mouth ulcers.
So here's the weekly overview. But as you may heard, the treatments and side effects as well as after effects react differently on individuals.
Nurse Zuraida advised me on diet, oral and skin care as well as oral exercises from day one. I'm glad that she as well as the Radiotherapists were never tired to constantly remind me on those important rituals that I still practice.
Diet
Eat while you can! :) I was aiming to gain weight too so I wouldn't lose much later. Eat frequently and timely to manage the nausea from Chemo. I had a lot of crackers and fruits in between meals. Drink a lot of fluid to flush out toxin from the Chemo med. But at that moment, I had yet to monitor the amount I took everyday. I wasn't even careful about my diet, I took everything that gave me energy. Dr Azrif also had no restriction as long as they are healthy. But being malay/asian, pantang/restriction is better or when you're unsure. :)
Oral Care
As advised I gargled with salt water, 1/2 teaspoon to a glass of water, every 2-4 hours or after meals. It was initially more to develop a good habit in ensuring my mouth was always clean. When the mouth starts getting drier in Week 2/3, it's prone to infection that may caused by bacteria from food particles.
Skin Care
I was advised not to use any chemicals on my face down to the shoulders, where RT is done. They said, just run it with cold water and dap it with wet towel. How can I? :) So, I asked my doctor if natural/organic based product can be used. He suggested 'Simple' and Vitamin E Oil because some of his patients used it and it went well with them. I decided to still use my Himalaya facial cleanser and body soap which I believed are of natural ingredients. But this only lasted a week until I turned to cold water and wet towel only, just in case. :)
Oral Exercise
Nurse Zuraida gave me a visual diagram of oral exercises. This is again more to develop a good habit that will be useful when the mouth and throat start to get tight due to dryness, sore as well as ulcers. I heard of a patient that had lock jaw during treatment. Somewhere mid treatment, I also found it difficult and slightly painful to yawn. Sometimes, swallowing became unnatural too.
Energy
It was pretty much the same until after my first Chemo. The nausea made me want to just lie down but that was impossible because I had to get up for food or it would be worse. I also get tired easily. I went to watch Madagascar 3 and slept midway. I never slept in cinemas except when I watched Seabiscuit and PGL, they were late shows and boring. :)
TheEmoBit
I consider myself strong and practical. Even when I had a bad flu/sinusitis, I'd be up on the go. But hellowww, it's cancer! :) And the treatments were really harsh and wore me down. I was fine initially and thought I could manage it on my own until probably Week 3/4. I even searched online for cases like mine and on how they continued their normal routine. I thought, if they can then it shouldn't be a problem for me too, right? But by that weekend, I was really disappointed on how my body has gotten weak so quickly and worried that the changes would affect my loved ones, especially my 7 year old kid. I couldn't even get up to prepare a decent meal for myself then how was I suppose to care for my husband and kid. Previously, I was never keen to ask for help until it was really necessary. By that Sunday, hubs,kiddo and me moved back to my parents' because it was necessary for me to be taken care of and it's OK to let them help me.
I learned that skin peeling, sore throat and mouth ulcer usually begin between Week 3 and 4 of treatment. But that wasn't exactly the case for me. My skin only started to really dry up on the final Week 7 and peeling was for a week after the treatment completed. My sore throat only started to get bad, which forced me to only take soft and bland diet, in the middle of Week 5. It lasted until the week after my treatment completed. Alhamdulilah, I didn't have any mouth ulcers.
So here's the weekly overview. But as you may heard, the treatments and side effects as well as after effects react differently on individuals.
Nurse Zuraida advised me on diet, oral and skin care as well as oral exercises from day one. I'm glad that she as well as the Radiotherapists were never tired to constantly remind me on those important rituals that I still practice.
Diet
Eat while you can! :) I was aiming to gain weight too so I wouldn't lose much later. Eat frequently and timely to manage the nausea from Chemo. I had a lot of crackers and fruits in between meals. Drink a lot of fluid to flush out toxin from the Chemo med. But at that moment, I had yet to monitor the amount I took everyday. I wasn't even careful about my diet, I took everything that gave me energy. Dr Azrif also had no restriction as long as they are healthy. But being malay/asian, pantang/restriction is better or when you're unsure. :)
Oral Care
As advised I gargled with salt water, 1/2 teaspoon to a glass of water, every 2-4 hours or after meals. It was initially more to develop a good habit in ensuring my mouth was always clean. When the mouth starts getting drier in Week 2/3, it's prone to infection that may caused by bacteria from food particles.
Skin Care
I was advised not to use any chemicals on my face down to the shoulders, where RT is done. They said, just run it with cold water and dap it with wet towel. How can I? :) So, I asked my doctor if natural/organic based product can be used. He suggested 'Simple' and Vitamin E Oil because some of his patients used it and it went well with them. I decided to still use my Himalaya facial cleanser and body soap which I believed are of natural ingredients. But this only lasted a week until I turned to cold water and wet towel only, just in case. :)
Oral Exercise
Nurse Zuraida gave me a visual diagram of oral exercises. This is again more to develop a good habit that will be useful when the mouth and throat start to get tight due to dryness, sore as well as ulcers. I heard of a patient that had lock jaw during treatment. Somewhere mid treatment, I also found it difficult and slightly painful to yawn. Sometimes, swallowing became unnatural too.
Energy
It was pretty much the same until after my first Chemo. The nausea made me want to just lie down but that was impossible because I had to get up for food or it would be worse. I also get tired easily. I went to watch Madagascar 3 and slept midway. I never slept in cinemas except when I watched Seabiscuit and PGL, they were late shows and boring. :)
TheEmoBit
I consider myself strong and practical. Even when I had a bad flu/sinusitis, I'd be up on the go. But hellowww, it's cancer! :) And the treatments were really harsh and wore me down. I was fine initially and thought I could manage it on my own until probably Week 3/4. I even searched online for cases like mine and on how they continued their normal routine. I thought, if they can then it shouldn't be a problem for me too, right? But by that weekend, I was really disappointed on how my body has gotten weak so quickly and worried that the changes would affect my loved ones, especially my 7 year old kid. I couldn't even get up to prepare a decent meal for myself then how was I suppose to care for my husband and kid. Previously, I was never keen to ask for help until it was really necessary. By that Sunday, hubs,kiddo and me moved back to my parents' because it was necessary for me to be taken care of and it's OK to let them help me.
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