The story of Ashya King has been as shocking as it has been upsetting and has stirred up all sorts of thoughts and feelings. Cancer treatment is something that I have looked at from different points of view. Not only as someone with an advanced cancer that needed and received treatment, also as the daughter of a woman who had and then refused cancer treatment and in all honesty, it comes across like a bit of a minefield.
Back in my blissfully ignorant-about-disease days, I believed that cancer was cancer and treatment was treatment. Now I know that is far from the truth. There are numerous variations of both and combination options, and it’s essentially down to your doctor to decide the best combination for you, based on your illness, their experience and resources available.
I originally had a surgeon who wanted me to have the ‘standard’ colorectal cancer treatment plan. I then saw another surgeon who wanted further testing. As a result a much more extensive treatment plan was given to me. I say ‘given’ because it was. There was no discussion just this is what we are going to do.
Since recovering I often question, what if I had stayed with that original doctor? I only changed because my brother-in-law worked at a different hospital, not because I was expecting better treatment somewhere else. If I had stayed with the original surgeon and his plan, not all the cancer would have been removed and I would have only had half the amount of chemotherapy I ended up having.
As time went on other variations on my treatment plan popped up. Should or shouldn’t they remove my womb, was it genetically problematic, the order of treatment, different doctors held different opinions. It started to seems to me that cancer treatment is on a spectrum ranging from a very well-educated and resourced opinion to a blanket standard. I have no doubt that I was getting the best and right treatment for me. But what if you aren’t? What if you believe there is a better or different way? At what point do you stop trusting what you are being told and go out on your own?
After my operation I did not regain bladder function and was still using a catheter weeks later. My surgeon explained the bladder is a very sensitive organ that doesn’t like being pulled around (I love this, makes it sound like stroppy teenager), and given time it would return to normal. In the meantime I was referred to a urologist so I could learn how to insert a catheter at home. I returned for my follow-up a few weeks later, believing it was just to check if I was getting on with the catheter’s OK, when they said they wanted to run a series of heavily invasive tests with a view to operate and create a second stoma for my bladder. WHAT! Firstly, one stoma’s enough. Secondly, this went against everything I had been told up to then. I was still having chemotherapy, still recovering from the 12 hour surgery I had only a few weeks before. The thought of another operation and another stoma served as such an incomprehensible blow. I asked if it would be worth waiting to see if I regained function as I had been told I would. She was very matter of fact, this was her recommendation. No discussion, no options. I was devastated.
So what did I do? I ignored it. Not something I would advise with health conditions, but I did speak with another doctor who said they didn’t agree (alleluia). She thought that I should wait, give my body a chance to heal. I knew straight away in my heart that it was the right decision. I did regain full bladder function over the coming months so in this case it was right, but what I did find shocking was the way I was cut off by urology. I wasn’t following their treatment plan so that was that. I never saw anyone in urology again.
Since having cancer I have met with some fascinating people who work in the cancer field. Some have been surprised that I wasn’t aware of the treatment variations available. I had no idea there were different kinds of cancer drugs with new one’s being developed and trailed all the time. In my case, it matters very little. I am happy with the decisions, but what if you’re not?
Should we look at doctors as all-knowing beings and be forced to place our health in their hands no matter what? Even after going through cancer, I still only understand the tiniest fraction of the science, so surely people who have trained specifically in the illness know best? Or should we be involved as patients, guided by but not bound to doctors expertise? These are not rhetorical questions, I am genuinely asking because your health is to important not to be discussed.
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