Electra & AML: End of Chemo Cycle 1

(See all posts related to Electra's ongoing treatment)

So today marks a fairly key milestone in this chapter of our lives: Electra's last day of chemotherapy in her first cycle. As I mentioned in the first post, she will be going through four cycles in total; each one is ten days of chemo followed by 4-6 weeks of recovery, depending on how her body reacts.

So, how's it been since I last posted? Well, frankly, not quite so great. Although the chills that she felt previously which worried me so much seem to have passed, she's been getting more and more tired. Some of this is due to disrupted schedules (on Friday, her second round of chemo didn't finish until 3AM and with a 6AM wakeup call for blood pressure checks, fatigue is inevitable). But much of it is due to the chemo itself. As I said before, chemotherapy is poison deliberately injected into your veins. Do that for ten days, and the energy levels will tend to drop. So Saturday was really the lowest point: she slept much of the day, and had no energy to speak of while awake.

This is where being a carer is a bit strange. Because the best thing I can do is... be there. It can be tough to feel that sitting in a chair playing Civilization IV for 6 hours is helping someone beat cancer (though if that's all it took, I could be a real doctor!). But that's what she needs. Someone to help her know she's not fighting alone, that's she's loved and watched over, but who will let her get the rest she needs.

One of the hardest impulses to overcome when caring for someone with a disease like this is the impulse to constantly be "doing" something. There's a profound sense of powerlessness that accompanies cancer, especially for those on the sidelines watching a loved one go through it. There's a feeling that should be more active, able to help in a more tangible, profound way. But you can't; the chemotherapy does all the heavy lifting (or radiation treatment, bone marrow or organ donations, etc. depending on the cancer). And in many cases, you can make things worse by trying to meddle or micromanage. Pushing too hard adds stress and fatigue, fiddling with minutae can wear the patient out, and trying to push someone beyond their limits can set someone back, medically. So as hard as it can be to accept (especially for someone like myself, who is a "fixer" by nature), the reality is that sometimes the best thing you can do is provide love and care quietly while the patient sleeps and heals.

A corollary to this is the need to take care of myself. Because of the desire to be doing something at all times and to try and fix things, it's easy to disappear into the world of the carer, to give up your life for it. And that's dangerous because this is not a three-week sprint; it's a six-month marathon. As much as I'd feel better about how much I was helping if I were to be in there every day, that simply isn't tenable for half a year. So to that end, I'm currently back in London for a week or two, sorting out work and having a bit of a life. I don't know what our eventual schedule will be in terms of hospital vs. home, Worcester vs. London. But I know it can't be 100% hospital, as guilty as that sometimes makes me feel (I know it shouldn't but it does at times). Electra's mother is visiting for two weeks and her brother will be here for the second of those; he father is planning to come shortly after that. So she's got carers still, and I will be up at some point during that time; until then I need to try and enjoy myself a little so I can recharge and better help out when I do go back. I just need to learn to fight the urge to be constantly fixing.