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.

Electra & AML: Once More Into The Breach Dear Friends

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

So, I haven't really kept up my plan of "post more often, if shorter posts". So let me start with a bit of an update:

Electra is currently back in hospital for round two of treatment. It was a little bit of a rocky road getting in there. The original plan was to have her get her bone marrow treatment on Tuesday the 1st and go back in for round two on Thursday (the 3rd). However, as I mentioned previously, she pushed it back to Thursday. Ultimately, the choice between painful procedure versus less painful procedure and additional weekend of freedom with myself was an easy choice. So in the end, she was scheduled to go back in on Monday (the 7th).

However, best laid plans being as they are, even this was ultimately altered. The ward she's in had no available beds, so she was asked to try again on Tuesday. Evidently, even though the first cycle must be administered with the utmost urgency, once wiped out the malformed "blast" cells take some time to come back, so the push to recommence is lessened. So she came back on Tuesday, when a bed freed up. However, still things were not as required. In the intervening time, Electra managed to pick up a nasty infection (probably another iteration of her recurring throat infection). Since chemo decimates one's immune system, they are loathe to start it while the patient is already ill. So, intravenous and oral antibiotics were the course of choice. The idea was to tackle the infection first and foremost, then commence chemo.

And yesterday (Saturday the 12th) was the kickoff. The infection had raged a bit, and Electra had been kept in the hospital the entire time for the sake of monitoring and administration of the antiobiotics. But by Friday, things were calming down and she was pushing to get chemo started on Saturday (as weird as it is to request the injection of poison into your veins, an early start does of course correspond to an early cessation). And she was successful! So she is currently (as I write this) completing her second day of round two.

This time around, though, it's been harder. We knew it would be, of course, so were somewhat prepared. But because her system was already at less than 100% when the treatment started, all the effects have been worse than the first time around. Cycle one didn't start to get bad until at least half-way through; cycle two started to get bad about a half-hour into the treatment. The symptoms were as before: nausea, fatigue, chills, etc. But this time they seemed much worse. Fortunately, Electra is getting better at asking for help in these instances (though it still takes some prodding from yours truly), and the anti-nausea meds have done a reasonable job.


On my end, the push back on the start date of chemo affected my plans. I'd intended to go up today, but Electra and I decided that it was best to have me present for the week after the actual chemo application (which is generally the hardest week and the one where she really needs support). So I've bumped it back until Wednesday the 23rd (due to a doctor's appointment of my own and a work commitment, I can't leave until that Wednesday). This will be the longest stretch we've had apart since this whole shebang started, and it will be very tough for both of us I think. I miss Electra quite a lot and though I know it's dumb, can't help but feel that I'm not doing my duty and really should be up there. Electra for her part, misses the comfort and support that I can provide, though she's been very clear that it's good for me to spend time in the South and not be a martyr in this. Plus, this longer period of time allows me to get some things done that I've been putting off too long. When I'm only home for a week at a time, I tend to triage much more than during longer breaks: I only deal with the most pressing "to do" items, so the myriad of little things I want to work on tend to slip. This longer break will give me a chance to correct that. But that doesn't mean it's not hard.


So, the treatment continues. This cycle promises to be harder than the first, a daunting prospect no doubt. But as usual, I am cautiously optimistic. Electra's progress during the first cycle was incredibly promising, and although there were bumps in the road in terms of infections and side-effects, these are to be expected and the key signs (response to the chemo and bounce-back time of her immune system) all point to a course of treatment bound for success. Doesn't mean I'm not keeping my fingers crossed while knocking on wood and rubbing a rabbit's foot wrapped around a four-leaf clover, but hope is present.

Electra & AML: The Eye of the Storm

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

This week has been one of respite, a nice change from the tedium, monotony and frustration of the hospital life: since last Friday (January 28th), Electra has been home from the hospital. Her neutrophils are up (as I mentioned earlier, these are the most common type of white blood cell and the chief weapon in the body's immune system). The measured level was sufficiently high that the hospital decided they'd had enough of her and kicked her out for some much-needed R&R (I may be paraphrasing the reasoning a little).

Unfortunately, due to a series of prior commitments I'd made when we'd assumed she'd be in the hospital much longer, I was confined to London for the weekend and Monday (I had an immovable presentation on Monday morning). So to my chagrin, I would miss the first weekend that Electra was to spend in comparative freedom, a rare gift in these times. We had various things to look forward to in home time-pancakes, sleeping in and movie nights principle amongst them. But alas, it was not to be. The schedule, as dictated by the hospital, was a blood test Monday, followed by a bone marrow test Tuesday and readmission to the hospital Thursday.

Monday went comparatively as planned, save for a return of the sore throat which originally triggered the tests leading to Electra's diagnosis. However, an examination showed this as nothing to be terribly worried about, and indeed it has faded since then. The car ride to and from the hospital drained Electra a lot, and she cancelled her planned evening with friends on Monday. That same day, I left directly from work and drove back up to Worcestershire, not the safest drive I've ever made as a result of my fatigue (another rant for another day), but I made it.

On Tuesday, Electra's imagination got the better of her. See, the first bone marrow test was intensely unpleasant for her, hardly surprising since it involves a large-gauge needle poking a hole in the back of one's hip bones. The problem is that while the test really is unpleasant, the thought of that unpleasantness can be daunting, and Electra found it difficult to go through a second time and asked the doctor if it were possible to be sedated. It was, but it meant she'd have to come back Thursday. This in turn meant she wouldn't be readmitted until Monday. When faced with the choice of pain and fear or free sedatives and another weekend at home (with me this time!), the choice was pretty straightforward. Even when I'm being hardest on myself, I still generally believe I'm preferable to a giant hip needle.

Yesterday (Wednesday) was a lovely evening out with four of Electra's friends. I haven't asked them for permission to use their names so they'll stay anonymous for not, but it was two couples, Electra's father and Electra & I. We went to a lovely little pub up the road from Electra's place, and had a very nice evening. It was also Electra's first time wearing the wig she got on the NHS scheme. It's very similar to her natural colour, though perhaps a touch more red in the highlights. It's semi-wavy and just to the shoulder. She looks good in it, and you wouldn't know it was a wig except that she hasn't figured out how to scratch her head without shifting around dramatically.

Today, then, was the revised date for the bone marrow biopsy. It all went well except that the sedatives didn't really kick in until about half an hour after the procedure. So Electra was lucid and somewhat pained by the procedure then loopy and happy and fun after the fact. Electra after sedation is similar to Electra after a few G&T's: friendly, loving, excited to see everyone, waving to passersby, and with a tendency to ramble on a bit, specifically about people and things she loves. Very endearing across the board.

Weeks like this are vital to the healing process, in my feeling. When dealing with something like cancer, there is a tendency for it to overwhelm every aspect of one's life. As a carer, I find this tough to escape: I take time for myself and spend some time just living and not thinking about cancer to whatever extent I can. But my thoughts wander as thoughts so often do. And they often drift back. In some ways, it's like when I was working on my Ph.D.; even when I took a night off, the shadow of my thesis loomed large, forever in the periphery of whatever I did. Some of this comes from wanting to keep people updated, and people checking in. And I really love that people care enough to want updates and don't ever want anyone to stop asking, but of course it makes forgetting about cancer-even for a day-difficult. Again, this is like the inevitable question I got during my postgrad ("How's the research/thesis going?" followed by the more-inevitable answer: "Rubbish. More beer please!").

So that makes this limited calm-in-between-storms all the more important. Because the shadow looms as dark and large as ever, but for awhile, we get to turn on an extra light or two and banish the dusk to the very corners of our lives. We get to watch mediocre TV, eat real meals, fall asleep and wake up together. And that break, that evanescent suspension of disbelief that life is as it was two months ago, helps provide the fortitude to persevere through the bad times. It is the security blanket of hope and reassurance that this, too, will end and normalcy and health will be restored. I only wish we had longer before the next onslaught.

On a more "meta" note, I'm hoping to slightly shift the way I make these posts. The dilemma of the lengthier posts such as this one is that writing them takes sufficiently long that I tend to put it off. Which of course gives me more to report one. So my new plan is to post more frequently, but shorter. So please stay tuned, and I'll try to fulfil that promise.