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At what stage do you decide that your quality of live is more important that the quantity?
Early this year I was found to have a very advanced colorectal cancer, stage 4, with no possible cure. I had ended up in the A & E department of our local hospital after my bowel had perforated and now had gangrene, emergency surgery was done to remove the primary cancer and 23 lymph nodes, 10 of which were cancerous, my liver was found to have extensive secondary’s and also one tumour in the lung. Palliative chemotherapy was offered, the sole purpose was to try and give me a few more months of life.
I had originally decided against this option, (mine was the 2nd advanced bowel cancer in the family) but my oncology team talked me into giving it a try, telling me that I would have approximately 6 more months to live without it and a year or even 2 with it.
My first mistake was to believe what I was being told, I understand that they want patients to try chemo, the old fight this cancer routine but at what price.
Firstly I had no idea just how badly the chemo would affect me, my cycles were 2 weeks long, 3 days having the drugs infused and 11 days to recover enough for the next cycle.
At first I was tolerating the drugs ok, but by cycle 5 I had gotten to the stage where I was not recovering fully before the next dose, cycle seven in particular knocked the living daylights out of me and I was still dealing with the worst of it when it was time for the next cycle, I knew I should have asked to skip that treatment.
On the second day I got to see my new oncologist, we sat down and had a long and for me a very informative discussion about my case.
My latest PET scan showed no improvement at all, my CEA tests had shown an increase in numbers over the last few months; the cancer was still active and was starting to grow bigger, decision time.
To start with my new oncologist told me that I was the boss here, she would give me all the information, offer treatment options, answer questions but in no way would I be told what I should do, that I was the only one who knew how I felt and what I wanted to do, based on being given facts, no guesses about how long I might have doing this or that, why? Because we are all different, our cancers are all different in as much as we are at different stages, no two people have the same side effects and we are all different when it comes to what we want from our last months of life.
So I have now decided to stop chemo, I do not call this a life, on very good days I can crawl out of my bed for a few hours, something as simple as going to the grocery shop is now beyond me.
I want to spend what time I have left with my family but also need to be able to function on some level of normality, I want to travel, too make good memories for them to cherish after I pass away.
As this last dose of chemo is slowly leaving my body I am getting a little stronger every day, the side effects are lessening and hopefully will disappear.
I have not as some people might think given up the fight, what do I fight is my question to you? I am taking back control here, I want to be able to do the things we all take for granted, I know and accept that my time is running out, but then so is everyone’s, mine just a bit sooner than I would have liked but I have to say there are far worse ways to die than this one and for that I am grateful.
So I have chosen quality over quantity, never think for one moment it has been an easy choice but it is mine and only someone who is in this situation can understand how it really feels.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.