Life planning

A provocative campaign to raise awareness
for colorectal cancer.

The question been on my mind for some time. What are  alternatives are there if one were to opt to stop all treatment? I know what the likely consequences of that will be, but what does that mean in practical terms? What does that mean at the "end of the road"?

I saw the words "HOPE" on an billboard at a metro station some weeks back. It was an ad for a charitable foundation specialised in providing support and aid for cancer patients and their families. So I looked up the address, and used the time alone to pay the charity a visit.

It was a little office in a residential area, located in an obscure side street. And yet, on the door, in big colourful letters "Little  Station of Hope". The organisation has existed since 1982, and was formed by a number of doctors and nurses who wanted to create a body to provide cancer patients and their families exactly what the name says: hope. Hope in terms of offering medical advice, organising gatherings and courses, offering counseling and financial support for those in need. There are even books and wigs you can borrow if you need to.

When I entered, it was very busy, for a class just ended. I stood by the door for a little while before a lady came up to me and asked what I was interested in. She was extremely friendly and listened to me describe mum's condition and treatments over the last six years. Surgery to remove a Stage III tumour on the colon in 22006, relapse in 2008 and annual chemotherapy ever since. I had pictures of mum's medical report stored on my phone, so I listed the drugs mum has used or taken. 

"Four years already? She's done chemotherapy for four years?" There was disbelief in her voice. And from her expression I could see she finally understood why mum (and I, or perhaps I most of all?) are considering to just "let things be". "Oh, she really has used all the possible drugs there are..."

And I reminded her that mum also did radiotherapy last year, and underwent a major surgery a month and a half ago. And just today, she completed four sessions of cyberknife treatment. What else is there that she has not tried? And the cancer keeps returning, keeps popping up in other areas... So brave, so very brave is my dear mother... I could burst into tears at the mere thought of how much she underwent in the past couple of years, and how long I have accompanied her on this journey. I held back...

The nurse-volunteer explained to me the possibilities, and that at this stage it is too early to say in detail what kind of care mum would need. Frankly, we are not there yet, despite mum's worsening sores and continually weak health. But of course it is always good to think ahead, to plan ahead. To plan for life (and, yes, plan for dying and death...).

"Palliative care" is an option if you don't want to continue any form of treatment. In line with what I have been thinking, it doesn't mean giving up. It just means that the patient stops receiving treatment for cancer and just "let things be". The focus will then to alleviate pain and ensure the patient is as comfortable  as possible, till the very end You still have to go to the hospital every two months or so to followup on developments. If there are symptoms, or any worsening of the illness, the doctor can prescribe ways to reduce or alleviate the pain.

Four celebrities, joined by members of the public,
are doing a 21-day run around the island to raise awareness for ovarian cancer.

"It may be possible the cancer will spread to her stomach, damage her digestive system, infiltrate the kidneys..." the care worker explained. By that point, feeding regimes will have to be established, and also we will have to think about ways to get rid of any bodily wastes. By that point, at the very end, mum will definitely need constant care and need someone to be by her side all the time to attend to her needs. Much like the first weeks immediately after her surgery. All this can be done at the hospital, or at home, where a healthcare worker can visit regularly to ensure a comfortable and dignified end. Should things come to that, details will have to be talked through with the doctor and healthcare workers.

The way she described possible outcomes of not proceeding with treatment sounded daunting, bleak and frankly painful. But is not the alternative, of being in the hospital day in and day out, of being so physically and mentally eroded by chemicals and medicine, really a better option? I will have to return another day and bring mum to talk about all of this. For it is her life, and she must understand and get to fully know what the possibilities are.

"For now, just do as you have always done," the nurse-volunteer said. Be like normal people, do things you enjoy, travel. There is no reason not to. There really is no reason not to.

"Have you thought about what your plans are?" she asked.

I was taken aback by her question, for I went to the charity with mum's condition in mind, and had not really thought me or my plans would be brought up. I told her my life over the past few years, all the traveling, all those restless, and at times sleepless, nights. I told her my fears of committing to anything, whether it's a career or in my personal life. She listened quietly and nodded. She understood.

"Often what a parent wants is not for you to give up everything because she is ill..." she said, "Of course cancer can affect family members and future plans, but have you thought about perhaps your mum would be happier and can "go" easier if you were more settled?"

I did. All of this I did think about. I know, and I can see that my presence over the long run can cause her much grief, much pressure-- to the extent that she has even told me before she would want to "go" (ie die) quicker so I can go off and start living, instead of hanging around her and taking care of her. But there is always this fear.... this incessant fear that if I go off and pursue my dreams and my happiness, I may miss that day she...

"Sounds like there are no regrets between you and your mother," she said calmly, "There does not necessarily need to be a conflict between being there for your mother and doing what you want in life." How many people like my mum and me has she come across throughout her career and her time at the charity? The feelings of care, of love and fears of losing a dear, dear one is universal. "If there are no regrets, then that does not mean you are abandoning her. You can still give her moral support, talk to her often, encourage her. I am sure you will be there at that crucial end..."

I sure hope I will be, I can be... I so much do hope so... But that is not for me to decide, for I cannot influence fate, I cannot influence the way or speed at which mum's cancer chooses to grow or spread... I cannot influence, let alone control, the unknown future.

All I can do is find mum a network of support she can turn to other than me, for I am not a medical expert, nor am I someone who can fully relate to what it feels like, what it really feels like, to be a cancer patient. All I can do is show her there are other options than face  treatment after treatment.

And this is what I am trying to do. Trying to do.