The Cancer Caregivers

Assalamualaikum and salam,

All this while I’ve been talking about me and other cancer survivors dancing with cancer and living with it. I’ve only touched a little on other people who are also affected by it; for instance the family and friends who are constantly bracing themselves for the high possibility of the inevitable (recurrence or even death). These people are also greatly affected by cancer. I have always admired the resilience and patience possessed by the caregivers, particularly women for being there and being alert for the chronic cancer patients around the clock. I am sure it’s no easy task taking care of cancer patients especially those who are bedridden and need assistance in doing even such simple tasks like eating. Usually, people who are hit hard by cancer to the point of being helpless are frustrated for not being able to do the things that they are so used to everyday almost without batting an eyelid. They often get cranky, short tempered and agitated and taking care of them can be a real battle. This can really drive the caregivers up the wall. A lot of time the caregivers just give and walk away.

When you are hit with diseases such as cancer which takes months of treatments and healing, your spouses are also greatly affected. We hear a lot of cases where cancer really put a strain on relationships and this is a trying time for many couples. This is because most cancer patients especially oral cancer are not the same anymore. They are not as sociable as before and many suffer from inferiority complex and they just shy away from public. The talkative ones become quiet for fear of being embarassed when they are stared at everytime they speak or eat in public. Many spouses would just crumble and start to look for new partners who are able to fill the gap. The lucky cancer sufferers like the late Trev and Paul from the Mouth Cancer Foundation, Robert Pemberton, and Ron are blessed with their wives taking care of them patiently, lovingly and tirelessly. These caregivers would fight cancer like hell along with their husbands. They have my utmost respect for being the unsung heroes. I can’t imagine all those nightmares, the constant fear of losing their husbands, the uncertainties and the suspense that they are going through. I wonder where they got their strength. And yet, they are there no matter what….

Cheers, to the caregivers! You are great...

Bye, for now.

Sharifah

"Never stop fighting"

What's next?

Hi again,

I went for my follow up appointment last Monday. The doc was really happy with my progress. My weight has increased to 45 kg from 44 kg last month. Things are really looking good so far. While waiting for my turn, a doctor came by and asked how things were to which I responded all was well. She then told me that she read about what I’ve gone through in a magazine. ( Al-Islam magazine, Apr issue) Yea, forgot to blog about that. These folks from the Al-Islam magazine stumbled upon my blog and contacted me and asked for my permission to publish my story in the magazine. So, I gave my okay because the whole idea is to share my experience because like I said earlier, oral cancer is among the deadliest types of cancer but not widely known. Many people think that when you are young, don’t smoke, don’t drink or don’t chew betel leaves, you are ruled out from getting oral cancer. Well, cancer has a mind of its own….

My two year full pay cancer vacation (leave) has been approved. The approved holiday started on 1st Jan 2008 and will end on the 1st Jan 2010. So, that gives me another 7 months of vacation. What will I do by then? Teaching, no, does not look promising with my slurring speech. The thing is I kind of enjoy being a full time housewife and mother without having to burden my mind with the schoolwork which can be very, very demanding. When I look back, I can’t imagine how I could tolerate the stress from a teaching job for 17 years; teaching 6 periods a day (means walking from one side to the other side of the building or climbing up and down 3 to 4 floors 2 or 3 times daily), having to write record book every day, attending meetings endlessly, students’ discipline problems and not to mention the ever increasing workload. I think teaching is a messy job because you have to please a lot of parties; students, colleagues, parents, administration, etc, etc Could that be a reason for me getting the cancer?? I was told by a nurse the other day, that many cancer patients nowadays are teachers …hmm

Bye, for now.

"Never stop fighting"

Cooking Challenge

Salam and hello again,

Nowadays, for some reason I just love to cook for my family. When I see them gobbling my cooking, it gives me a weird sense of satisfaction. And the thing is I can’t even taste my own cooking and therefore I have no idea how good or horrible it tastes like. Whenever I ask my kids for feedback, they always say that it’s delicious. Maybe they think that saying otherwise would just end my cooking activities. So, I guess the only way to evaluate my cooking is to see whether they finish their food and how much they eat.

My darling youngest son, is forever, taking great care not to offend me. He would always say that whatever I cook is delicious. But, quite often I notice some leftovers on his plate. So, I know where I stand in the cooking department…haha

The best way to make sure there would be no food wastage is to cook and serve when they are really famished. Hungry people are not choosy!

Well, that’s for my family. What about me? My food mainly consists of ensure milk blended with a slice of wholemeal bread. Other than that, rice porridge mixed with celery, cauliflower, or broccoli and some fish. Sometimes I would also add carrot or potato. All these are taken through Peggy. I am trying to take some orally as well. So far, with little success.

Will keep trying. I’ve been partly motivated by a fellow tongue cancer survivor Brian.

Bye, for now

“Never stop fighting”

Meals

Hello all,

Having Miss Peggy with is not without its perks. For one, it enables me to take in the types of food (like beetroot, fresh ginger, gochi, apricot seeds etc) that I would not have otherwise. Furthermore, I don’t have to take forever cleaning my mouth after each meal. The only thing that I have to monitor is the possibility of having caries on my teeth because of lack of saliva.

I’ve been asked by many people how it’s like ‘eating’ through peggy and whether I have the cravings for solid foods. Well, you get the fullness sensation just like eating normally minus the taste. Do I miss enjoying my favourite food? You bet, I do! And whenever I have the craving for my favourite food, I quickly pour my meal into my stomach until I feel full. Then the craving diminishes in a snap. That’s how I deal with my cravings. The whole process takes only 5 minutes. Cool, eh?

I just read Dr Hasanah’s latest entry about juice fasting because she said that her lymph nodes are talking. I sure hope that her effort will yield satisfactory results. Maybe I should do that too. Shouldn’t be hard for me since my Peggy is here to stay..haha

Bye, for now.

"Never stop fighting"

A Time to Reflect

Salam and hello to all,

I have just read a blog about a tongue cancer survivor who also had a total glossectomy (the whole tongue removed) at around the same time I did. This blog is written by his caring and loving wife who has been by his side all this while and attending and supporting him tirelessly. He inspires and humbles me with his endurance and his positive outlook in life. I admire the fact that he never complains about his inability to do a lot of things he used to pre cancer and his absolute faith in God. Reading through the blog, I realised that he has gone through a lot worse than I have and yet he doesn't complain. What a guy! His blog is linked to this blog via The Florida Real Estate Robert Pemberton on the left panel.

I guess I have been quite fortunate in the sense that I have been spared from the things that he had to go through such as the gaping hole which oozes liquid and stuff. And I haven’t experience that much pain to the extent of having to use the painkillers consistently over a long time. Really, I don’t have a lot to whine about and yet…I do at times especially when I see people indulging in their food without a care. And I do whine when I am left at home with the children most of the time. No, no, I shouldn’t when I have a lot more to thank for.

Bye, for now.
Sharifah

I'm alright!

Hello everyone,

This morning I went for my follow up appointment. Glad to tell you that things are looking great. The last time I went, the doctor did a biopsy because I had a slight bleeding from my flap. The results came back negative. Yay! Since I had my peggy, my weight has increased by 3 kg. I now weigh 44 kg. My next appointment is May 11th. My doctor said that they want to monitor my condition closely because the cancer that I had is really aggressive. So, should it decide to come back, hopefully they’ll be able to catch it early enough. Well, I’m all for it.

On the 6th of April, I went for a follow up appointment with my oncologist. I was given a clean bill of health. While waiting for my turn, I noticed an year old girl with her mum. I heard her mum telling a lady that her daughter has brain cancer and she had gone through the radiotherapy and chemotherapy. What amazed me was that this girl did not look sick at all. She was happily chattering away…My heart really went to the mother. She must be going through hell. I think being a caregiver to child with cancer is even worse than being a patient. I don’t think I could handle myself if one of my children has to suffer from this dreadful disease.

Bye, for now

Living in the World of Cancer

Hello all,

March 19 marked one year of me in the World of Cancer. On that date last year, I was sitting on the dentist chair in the Hospital Sultan Abdul Halim, listening numbly to the oral surgeon telling me that the lump in my tongue was cancerous and I had to be referred to the ENT specialist. Then, the rest is history. On April 16, I will be celebrating my first anniversary for being tongueless. What an eventful year it was! And yet, I am still in one piece….Alhamdulillah…

Being in the World of Cancer, you don’t usually think in long term. You live by the day. Everyday is a blessing. Everyday is a gift. In my new world, people talk about 5 year survival. If you survive up to the fifth year, it is considered a huge success and definitely calls for a huge celebration. I still have a long way to go…I need to go through 4 more anniversaries to hit that 5 year mark. Another thing about being in this privileged world, when you meet your comrade for the first time, you don’t ask “How are you doing?” but rather “What type of cancer have you got?”. The next question would probably be “How long?”. Normally we recognize each other from their thinning hair or skinny body and if they are strangers to you, you just nod understandingly. It’s easier to recognize an oral cancer survivor because of the way they talk and the way they eat or drink. This is because of the slurring speech and when they eat they have to tilt their heads a bit so as to push the food to the throat. For a muslim breast cancer survivor, it’s a bit more difficult because they wear the head scarve (tudung).

Many people say that I am a very strong person for I don’t look sad or depressed. I haven’t changed much, they say. Whenever, they tell me a good joke I would laugh heartily. In short, they say that strangers would not be able to tell/guess what I have gone through. Am I worried? Am I sad? Of course I am. I am just human. But, I won’t let the worries and sadness consume me. Life goes on.

Well, you see, I have cancer. So what? That doesn’t stop the sun from rising and shining. People don’t quit their jobs because of that. The world still goes round. Nothing in the world would pause and wait for me. So, as long as I am still granted the ability to move around, laugh, eat, be understood, and use my mental faculties as well as before entering the cancer world, I have no reason to brood in self pity…..

Bye, for now.
Sharifah