Electra & AML: Healthy Person's Guilt

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


You'll have to pardon a bit of self-indulgence at this point, as this is a bit of a philosophical wander. If you wish to skip this borderline narcissistic self-analysis, please feel free to jump to the update, below.

There is a concept in trauma psychology called survivor's guilt. In short (largely because I don't 100% know what I'm talking about and have no psych qualifications whatsoever), survivor's guilt is guilt experienced by those who survive (counter-intuitive, I know!). In the event of a major tragedy, let's say a plane crash, those who survive are often wracked with guilt, doubly so if loved ones perished in the tragedy. Typical thoughts are along the lines of "Why did they die and I survived?". Even though that person had no control over their fate, nor the fate of others, they feel guilty at the thought that their loved ones did nothing wrong, and often nothing different, yet perished in the incident.

Sometimes, I think the same thing applies in a case like this one. Electra is a very healthy person. She eats better than I do, exercises more than I do, avoids alcohol more fastidiously than I do and just generally maintains a better lifestyle in many ways than I. In other areas, we're on par: we don't smoke, do drugs, work with hazardous chemicals, etc. So by any measure, she should be healthier than I. Yet I sit in her hospital room alert, fairly well-rested and healthy, while she struggles with fatigue, nausea and other ailments, all down to her cancer, or the treatment thereof. For no rhyme or reason, she is sick and I am not.

I know life isn't fair, and I certainly don't expect that it should be so. I don't believe in fate, or god. I don't think there is a grand plan for the universe, and so the concept of a cosmic balance is anathema to my view of life. Yet as much as I may know this to be the case, I can find it hard to believe, to really internalise. And so I do feel guilty sometimes, and I suspect many others who love her feel likewise. The main way in which this guilt manifests itself is the feeling that I'm not doing enough. I call this "healthy person's guilt".

Now, before I go further, let me be crystal clear: this is absolutely not a fishing-for-compliments attempt. I know logically that I am helping and am not looking for reassurances of that fact. Further, for reasons I'm not entirely clear on, I don't take compliments terribly well, so I sincerely am not looking for any kind of ego boost from this, so please do not construe it as such.

Instead, the point I'm trying to make is that this feeling is endemic to these types of situations. Part of it is my own tendency to set lofty goals and then follow-through poorly. When Electra's condition came to light, I had visions of doing reams of research into the condition, the treatment, case studies and support groups, and intended to work towards becoming an AML expert, insofar as is possible for someone untrained in human biology and medical science. Instead, I've done none of this. I still provide care and support, the research side has gone nowhere.

Secondly, it can be tough for me when I'm down south. Now, I hesitate to write this, because I will be reading it to Electra shortly and I don't want her to think for a minute that she's imposing on me in any way or that I'm resentful of the time I spend here. I'm not at all, but Electra isn't exactly immune to needless feelings of guilt. Instead, my point is that while I know (again, in the logical part of my brain) that I need to spend time away for my own well-being and mental health, it can be hard to internalise and I do sometimes feel guilty when I am absent. This visit was preceded by a two-and-a-half-week block in the south, due to work commitments and a doctor's appointment of my own which I couldn't easily reschedule. But 18 days is too long and I won't be away for such an extended period again. I have also been late in arriving the past two days, and have forgotten to bring certain items (books etc.) with me, something else for which I feel guilty.

In the end, this is something I need to work through, and I am. It is hard for me to be away, but it's also re-energising. And I do know that I'm helping, even if that is just to be here, cut her hair, hold her hand and sneak her some chips. A patient's mental well-being is vital to recovery and I know that I am aiding in this way, to some degree. So the important thing to scope out is where I am right and can/should be doing more (i.e. arriving on time for my visits) and where I'm being irrational and self-immolating. In the latter instance, I need to let my logical brain rule more and make peace with the fact that while I cannot wave a magic wand and cure Electra, that I am doing that which is in my power to do in order to help. I just wish I felt like I was doing enough.

UPDATE
So, a general update on progress. Electra is now well and truly in the neutrapenic phase of her second cycle. She finished the chemo a week ago (Saturday the 19th to be specific), and her neutrophils dropped to zero mid-week. She was allowed a brief respite out of the hospital from Monday through Thursday, and has been back in since Thursday morning.

This cycle has been a bit of a mixed bag. The treatment itself was more traumatic (in cycle one, she felt relatively few ill-effects during the first week of the actual application of the chemo, this time around she was weak and nauseous frequently). However, the neutrapenic recovery period has been more varied. In the first cycle, she was walloped pretty hard. I wasn't present but was in frequent touch and I know how tough it truly was for her. Fatigue was constant, nausea frequent and infections common. This time around has been much better. Her energy levels are often OK and her appetite has been pretty good overall. She's been able to be more alert and enthusiastic, both in person and on the phone. However, there are still some serious down points. She is frequented by bouts of discomfort and a general unwell feeling. Eating can often be draining, and she's still not sleeping perfectly. Though she's avoided major infections, she's spiked fevers from time-to-time and has been sweaty or clammy on occasion. But overall, it does give confidence that she can react well to the treatment. Whereas the last neutrapenic phase was an all-out thrashing, this one has played out more like an even-handed battle.

She should be coming out of the neautrapenic phase in a week or so and will hopefully get the following week out of the hospital. I'll be returning to London on Tuesday with the intent of coming up as soon as she's out so we can spend some time together in an environment that's more hospitable (and less hospital heh heh heh).

And I really will try to post more, I promise.