I’m starting to lose grasp of the science here, and that’s just adding to the frustration.
I was geared up for radiotherapy and chemotherapy, in a kind of: ‘right, let’s get this thing done’ way. I duly presented my body to the Cancer Centre in Belfast, effectively inviting them to do their worst with me.
Radiotherapy, consecutive weekdays for 30 days every afternoon, went pretty smoothly. Only mild side-effects to write home about.
Then five weeks recovery.
Then I had my first chemotherapy. A blood test, followed by a meeting with my oncologist, followed by day one of treatment: an intravenous dose of chemo in hospital, followed by a second and third type of chemo, both in tablet format.
Then nine days more of the third chemo at home, again as a pill.
Apart from fatigue, there were only mild side-effects. And the oncologist put the tiredness down to the remnants of the radiotherapy, rather than the drugs.
But on the day I was due to begin my second round of chemotherapy, six weeks later, I was shown the hospital door.
My white blood cell counts weren’t high enough to take more chemo. I should come back next week to try again.
And try I did. The next week, my white blood cell counts were still too low. And yesterday, they were too low again.
My first six-week cycle of chemotherapy (including the recovery period) will have actually been at least nine weeks long by next Tuesday. If my white blood cells still haven’t recovered, it will be longer.
It’s all very frustrating, and it’s hard to maintain the ‘get it done’ attitude. After all, if each of my six cycles will actually take nine weeks, that’s 54 weeks in chemotherapy in total. More than a year.
It’ll be the end of the summer 2017 before I’m done – and that’s if it does end up being nine weeks each time. It could be longer. (Of course, it could be shorter between cycles too).
It’s frustrating because it’s hard to plan ahead: how do you organise work, social commitments, a holiday, Christmas visits, when you’re not sure if you’ll have to cancel because you need to be in hospital during that week?
I had booked a two-week training bicycle maintenance qualification, finding dates that fitted perfectly between my chemo cycles, with plenty of breathing space each side of treatments. I couldn’t believe my luck.
I shouldn’t have.
If I don’t get the second cycle of chemo underway next week, I won’t be able to do the course.
My frustration is my problem. It is me learning how to be a cancer patient. It’s no-one’s fault, and I certainly do not expect my oncologist or their team to do anything other than what they are doing. I’m grateful for everything I have and will get from them.
But what’s starting to puzzle me, and what I vow to examine more, is how my chemotherapy regimen can be so flexible.
After all, if it is simply a case of sending me away week after week, then what meaning does the original plan to have six-week cycles of chemo mean?
Is it that six-weeks is the optimal treatment regime for attacking the tumour? In that case, aren’t I now lowering the chances of chemo working as well as it could do, by having such a rubbish recovery? A case of recovery versus tumour growth, in the balance?
Is there a limit to how many times I can be sent away? Before what? A blood transfusion?
The kind oncology nurses have sent me away telling me it’s quite normal, and it shows the chemotherapy is still working. But in that case, why is six-weeks the optimal regimen in the literature? Why is it not to give chemotherapy each time the patient’s blood count (and other health factors) are ready for it?
Then you get into crazy territory: if my chemo is still working, then why have another dose at all? At least until there’s more evidence of tumour growth?
Judging by my friends’ reactions to my sharing the news, again, that my chemo has been postponed, they’re just as puzzled about how it all works.
With all these questions, I know I’m struggling to stay within the bounds of scientific explanation. Grasping at straws. Playing tricks on myself. I know there is nothing I can eat, drink or do to get my white blood cells up – but interestingly, that’s the first question everyone asks.
So what gives? I will come back to these pages to share what I have learned.
The truth is, when I’ve been told each time that chemo isn’t going ahead, I’ve had a mixed reaction. First has been frustration and disappointment, because I’m not just ‘getting this thing done’.
But that’s quickly been followed up by positivity.
Great, another week of feeling pretty healthy, doing some cycling and climbing when I can, looking after the kids, and not taking toxic substances with my muesli every morning. (And laxatives twice a day, and anti-sickness drugs, and steroids).
With my epilepsy now currently a single momentary dizzy spell around once-a-week, I actually feel full of life. It feels very strange to write, but you wouldn’t know I had brain cancer at all.