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. 

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!

UMF 15 Manuka Honey

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.

35 RTs, 5 Chemos - What is it like or not to like?

Dr Azrif wanted to start the treatment immediately but since we were leaving for an 11 days Umrah visit, it started a day after we came back with a Radiotherapy (RT) session. I didn't have much expectations and was pretty relaxed. I just wanted to get the treatment over and done so I can cure the cancer. At that time, I still haven't met any NPC patients/survivors, so I didn't know that the side effects can get really bad thus I wasn't anxious at all.

I did my RT at Prince Court Medical Centre's Radiotherapy Services Department. Everyday before the treatment, my temperature and blood pressure were checked. Whilst my weight was monitored weekly in the first two weeks and 3 times a week thereafter. Similarly, Dr Azrif would see me once a week then 3 times a week beginning Week 3.

What happen during RT? To ensure the x-ray beam hit the right target, I had to put on a hard-plastic-mesh-like mask to ensure I stay put throughout the session. Some measurements and marks were made on my face before I put on the mask that was then fastened to the board that I laid on. It felt really uncomfortable for the first few weeks but reciting selawat and zikir helped to get my mind off it.

Once I was fastened, I went under the Tomotherapy machine for a scan (about 2-3 minutes) then pulled out while the Radiotherapists checked/analysed my scan and set up the necessaries (another 2-3 minutes) before they sent me under the machine again for the actual thing (about 7-8 minutes). It felt and sounded like I was under a photocopy machine. I shut my eyes but I could still see glimpse of the x-ray beam and smelled it when it ran over my face then gradually moved to my neck and shoulder. 

My daily dosage was 200 cGy; totaling to 70 Gy near the growth but more on the right side where the growth is, 60 Gy on my neck and 50 Gy for my shoulder. So that should remove the growth and kill any other cancer cells at those areas right? Well hopefully, but not only that actually. 7 weeks of intense x-ray exposure also caused inflammation at those areas. I really can't imagine how bad it is inside but I guess the inflammation caused my sinusitis to come back, the bad sore throat and probably affected some good innocent cells that made my mouth dry and sensitive these days. 

After a couple of sessions, my husband said I have to get used to it or it would be difficult for me to complete my RT. True but I told him, it's not something that I want to get used to. No thank you. Beside doa,zikir and selawat, I managed to distract myself by thinking of holiday destinations for when everything is over, had a couple of reflections and there was also a time that I sang to Whitney Houston's Greatest Hits album that was played during the treatment. :) Overtime, I did sort of got used to it because my body was too weak to even stay awake during the sessions.

It wasn't easy too when there were some days between Week 2 and 3 where the machine went down during my sessions. It would take longer than usual since they needed to rescan and reanalyse. I would get very disappointed and tired because I had to manage my nausea too. But the Radiotherapists have always been understanding and accommodating in ensuring my comfort, thanks so much! Alhamdulillah by week 4, the machine was fixed. 

I had my Chemotherapy every Wednesday over at Prince Court Medical Centre's Oncology Daycare. Chemo took about 5 hours thus I'd usually start early in the morning before I continued with RT in the afternoon. Before every session; my temperature, blood pressure and weight were monitored. My blood was also drawn for Haematology where they would look out for my Hemaglobin, White Blood Count and Neutrophils results. The results would determine whether I'd be fit to proceed with Chemo for the day. Alhamdulillah, my results were within range throughout the 5 sessions.

Going through Chemo was actually not too bad for me. The 5 hours could be boring but I would nap in between, watched TV or BBM/Whatsapp with friends and family (single-handedly since the other hand had the IV line fixed). The only downside for me was probably getting poked for IV line. But the nurses at daycare were always so careful and understanding. They also took time to chat (and hear my 'sad' stories :P) even when they were busy. Gems!

At every session, I was IVed a lot of Normal Saline, one big bag before Cisplatin (the Chemo med) and another after. Basically, I needed a lot of fluid to flush out the toxin from Cisplatin. So I visited the toilet quite often plus I left every session with puffy hands and eyes due to water retention I guess. 

There's actually one funny fact during every Chemo. :) Somewhere mid session I'd be given an antiemetic via IV to prevent nausea and vomiting. This med has immediate side effect, an itchy feeling at the genital that would lasts about 10 seconds. Weird but true! The nurse warned me the first time around and I was shocked when it really happened haha!

As I said, going through Chemo wasn't that bad but the side effects is another story of course. But Alhamdulillah, mine can be considered quite mild because my Cisplation dosage was quite low. Nonetheless, it wasn't a walk in the park to manage nausea and heartburn when you were also fatigue.

Since I detailed much on my treatment here, I think my next update will be more on the side effects and how I managed it.