Midway checkpoint on my cancer journey

Jul 19, 2016 06.00PM |
 

by Brenda Tan

IT HAS been about five months since my stomach cancer diagnosis in February, and I’ve completed six out of 12 of my chemotherapy cycles.

I’m currently at the midpoint of my cancer treatment and it’s a good time to review my cancer journey to date:

1. I don’t like being called a “cancer warrior”

A few friends, to cheer me on this journey, have called me a “cancer warrior”. I usually chuckle over this unexpected moniker because the image of a warrior – armed, tired and bloody from a battle – isn’t my experience of what I go through.

I don’t mean to belittle other cancer patients who are brave and courageous in facing their cancer treatments with the mentality of a warrior, but for me, I see my cancer as part of my life journey in living through it, rather than “fighting for my life”.

I see my cancer as part of my life journey in living through it, rather than “fighting for my life”.

 

2. Cancer has its own vocabulary

“Cancer warrior” is just part of the vocabulary that I have encountered while on this journey. Other terms referring to the cancer patient include “cancer survivor” (the definition has been expanded to include patients undergoing treatment), or “cancer overcomer” (a recent term, as some cancer patients don’t identify with either the label “warrior’ or “survivor”).

I too, don’t think these labels suit what I feel about my condition, but I’m stumped about how to deal with people’s sensitivities around cancer, especially when I tell them I have cancer. It sometimes feels like I’m not suppose to say “I have cancer” because then “cancer wins”. I wonder if people label diabetics as “diabetes warriors”? Or if saying someone has a history of hypertension means “hypertension wins”? There seems to be a taboo around talking about living with cancer even when more people are diagnosed with cancer year on year, due to cancer screenings and early detection.

It sometimes feels like I’m not suppose to say “I have cancer” because then “cancer wins”.

And then there are the medical jargon I had to learn about my condition and treatment, which led me to discover some really interesting facts about cancer.

For example, according to the information booklet from National University Cancer Institute, Singapore (NCIS), there are about 200 known types of cancer. Each cancer would have a different treatment, and actually, each cancer patient has his or her own personal treatment plan tailored to their cancer, its extent, and the health of the patient.

Even a term like “chemotherapy” doesn’t refer to only one kind of drug or treatment. Chemotherapy is a course of treatment that involves medication that is taken orally, applied, or infused to the body. Some cancers require treatments like radiotherapy, where radiation is used to destroy cancer cells, or hormone therapy, where hormones are used to impede cancer growth.

For many patients, the treatment plan involves a combination of treatments – I’ve had surgery to remove my stomach, and I opted for infusion (rather than oral medication) for my chemotherapy.

The treatment plan is also a guide rather than something set in stone. Each time before I go for my chemotherapy session, I have to get a blood test done to check my health status. I’ve had to postpone some of my chemotherapy sessions by a week due to low white blood count. Therefore, I don’t have an “end date” for my treatment plan, even though I have only six more chemotherapy sessions ahead of me.

With this basic knowledge about types of cancer and its different treatment plans, it is little wonder that whenever I see cancer quackery with headlines like “Eat this fruit to cure cancer!” or “Chemo kills more than cancer!” that are re-posted online, I wish I could ask the people who write these articles what type of cancer the article said eating the fruit would cure, or which particular chemotherapy drug is the one killing more than the cancer itself. When an article can’t get the basics about cancer right, it’s a sure sign that the article is a hoax set up to prey on readers’ fear about cancer.

 

3. The real heroes are the doctors and nurses

In my consultations with my oncologist, she not only guides me in what to expect in terms of my treatment, but she will also tailor the dosage of my chemotherapy drugs, according to how I react to the drugs in the past cycles and my current health status.

Most people really don’t realise the high level of skill and care that go into each individual’s cancer treatment plans, nor the number of medical staff involved in the treatment. Just for chemotherapy, there are the nurses who extract my blood samples, the laboratory staff who perform the blood test, the pharmacists who prepare the chemo drugs according to the dosage that the oncologist prescribes, the chemo ward nurses who administer the chemo drugs to the patient! Besides these medical staff, there are also the administrative and counselling staff who help with arranging dates for medical appointments or insurance and payment issues, or provide counselling to patients and family members who require a listening ear.

Most people really don’t realise the high level of skill and care that go into each individual’s cancer treatment plans, nor the number of medical staff involved in the treatment.

Each time I go for my chemotherapy session at the National University Hospital, I’m in awe at how focused on the patients each staff is, and the length they would go to see to the needs of their patients, regardless of the role they hold.

My chemo ward nurses, for example, are always on their feet, administering the infusion drugs (with some infusion needing specialised procedures), explaining procedures to new patients, making patients feel more comfortable during the infusion or just helping patients to the loo. They do all these while maintaining a cheerful smile to keep the spirits of their patients up.

 

4. Adapting is normal

While I’ve noted before that I’ve tried to keep as close to our home routines as much as possible, my family and I do have to adapt to my condition.

Then again, I had to adapt when I got married and live away from my family, and again when I left teaching to care for my firstborn. We had to adapt when my husband and I set up our business, and yet again, when the two younger kids came along. We adapted when the business took off, and when the kids went to school.

Life is a series of changes and adapting to these changes, which is why I don’t see my cancer as something that sends us on a tailspin, but as merely one more of life’s challenges to adapt to.

Life is a series of changes and adapting to these changes, which is why I don’t see my cancer as something that sends us on a tailspin, but as merely one more of life’s challenges to adapt to.

What really helps in dealing with any change is making a conscious choice to embrace these changes with positivity.

 

5. Having a sunshine week to look forward to helps

Each of my chemotherapy cycles is a two-week period.

I have three chemo drugs that I have to receive via infusion. Two of the drugs are infused in the chemo ward over a period of about 4 hours, while the third one is infused over 46 hours. Thanks to medical advances, I’m fitted with a portacath which not only helps with the infusion at the chemo ward, but allows for a portable infusion device to administer the 46-hour infusion over the two days when I’m home. When the 46 hours are up, I make another trip to NUH to remove the device.

I begin to feel the effects from the chemo drugs on the day I start my infusion at the ward. Day 1 is a relatively easy day, as health-wise I’m feeling strongest. But by day 3, when I remove the infusion device, all I want to do is to hide in a darkened room and sleep. The effects of the chemotherapy lasts about 7 days (my “chemo week”), and some time about day 8 or 9, I wake up feeling like sunshine and blue skies have appeared after a long, dark period of haze.

Thus far, each chemo week has its own challenging aspects and intensity in the side effects, which my oncologist warns me, may be cumulative. Some weeks, I’d have more intensive sensations of nausea and be weak from many bouts of diarrhoea, but during other weeks I don’t experience these side effects at such levels. What’s consistent though, is that my energy level is low, I am sensitive to light, sound, and temperature, and my hair loss gets more obvious, even though my oncologist assures me that I won’t go bald, and therefore, don’t need to shave.

What gets me through my chemo week besides being in a darkened room, wearing PC-glasses when I’m on my computer, reminding my kids to be quiet, and meditating in prayer during the worse of it, is knowing that there’s a sunshine week to look forward to.

While my sunshine week is now shortening due to the cumulative effect of the chemotherapy, I still enjoy my return to my usual energy level, to connect with friends, to cook for my family, or work on business matters.

While my sunshine week is now shortening due to the cumulative effect of the chemotherapy, I still enjoy my return to my usual energy level, to connect with friends, to cook for my family, or work on business matters

.

Because I’ve begun to get a better sense of what to expect during my chemotherapy cycles, I find that not only am I able to cope well with my cancer treatments, I’m in fact looking forward to my visits to the chemo ward for my “chemo-spa”:

I get a very comfortable chair in the chemo ward (they are like first-class seats on the best airline), which I make more comfortable with a cushion from home and a picnic of my favourite snacks to last me through the 4 hours of infusion. I make sure too, that I have my favourite movies on my iPad (even though there’s a TV for each cubicle) and my yarn to crochet the time away, while enjoying my “flight” to nowhere.

These happy comforts are packed in my roll-on cabin bag, which makes me feel even more like I’m embarking on a journey to better health!

 

Brenda is a columnist, and a friend, of The Middle Ground. Read her other pieces, in a series of occasional columns on her journey with stomach cancer:

  1. No stomach for cancer
  2. Reframing cancer as an opportunity to grow
  3. Mummy musings: Mothering through cancer

 

Featured image by Sean Chong. 

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