Electra & AML: Absence

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

I am writing this post from my friend's apartment in Toronto. You see, for some time, I've had a trip to Canada planned. This is specifically for my friend Howard's wedding (for which I'm best man) but more generally, I've orchestrated a vacation and series of visits around that one event. As a result, I've been back in Canada for nearly a week now, with another week and a half to go.

This is my first time being truly away from Electra since her diagnosis. I've been in London much of the time, of course, but not truly away to the degree I am now. Though we're in frequent contact by Skype, it is the longest we will have gone without in-person time (from the last time I was in Birmingham to the earliest time I'll be even able to get back will be roughly a month) and also by far the greatest distance between us. This is simultaneously very difficult and somewhat relieving.

It is difficult, because I know that a Skype call isn't the same as a visit or even a phone call, and it's difficult not to feel like I'm failing to provide adequate support during her recovery. One of my philosophies in life has been that you can't do everything, but you should that which you can. In this instance, I cannot do anything medically, but the support and comfort I can give allows me to contribute, and so I do what I can and provide that where possible. At the moment, I cannot do that. I still call daily, and try to call right before her bedtime, but the latter isn't always possible, and I cannot guarantee the former will be at all times. So it can feel like I'm unable to provide the one type of assistance I've been able to give thus far. It's also difficult to hear about progress, both good and bad, and not be acutely aware of the fact that I'm not there to witness it.

However, I do feel that it's providing me some much-needed respite for myself. Over the past few weeks I've started to see myself getting more and more tired, more and more stressed. This too makes me a poor carer, and is why everyone (including Electra) is careful to remind me to take care of myself. So getting away from the situation and responsibilities, if only for awhile (and while still being in contact) allows me to recharge my batteries a little bit. I've greatly enjoyed catching up with friends here, sleeping and eating and just generally being able to relax and reflect a little bit. With cancer, there is a tendency for it to dominate your thoughts to such an extent that it's difficult to avoid it weighing heavily on your mind. So to be able to have some time away is important to one's sanity and a welcome change.

But I think, despite these potentially conflicting emotions, that I can maximise this opportunity. I'm here for a total of two and a half weeks. In the grad scheme of things, not that long. But enough to reinvigorate myself rather dramatically and get some much-needed R&R. I am still in touch daily as I've said, so I don't feel negligent or too far removed. And I know that in the end, this will give me the strength to return twice as strong to the UK, and that I will be much better equipped to provide the necessary support if I let myself relax a little and truly enjoy my time here. And that's what I've been doing so far.

Status Update: Electra is currently out of hospital, and recuperating at home in the rental flat in Birmingham. She was released from the hospital far earlier than expected, and has been able to arrange a less-frequent visit schedule, due to her rapid recovery. She'd been expected to have to go to the hospital thrice weekly for six weeks, but that wasn't much  more than a week and a half, and she's now down to weekly visits. This is due to the doctor's confidence in her recovery. So all signs are pointing up.

However, the process itself is still quite unpleasant. This time around, the biggest problem has been a general sense of discomfort and being ill-at-ease. Electra cannot seem to find any position, sitting or laying, in which she is comfortable. As you can imagine, this makes sleeping difficult. She's also started to get hit by the acute boredom of one trapped at home for extended periods of time. However, her fatigue and trouble focusing (which we call "chemo brain") has made it such that any activity that would alleviate such boredom, including TV, reading or even listing to the radio, is taxing. So it's a bit of a paradox: bored by the lack of anything to do, but unable to do anything to alleviate the boredom.

Also, within the last few days, we've seen the first signs of what is potentially Graft Versus Host Disease, or GVHD. Acute GVHD is the big worry at this stage, as it is the body turning against the new bone marrow, with catastrophic results. However, the doctors have said that a small degree of GVHD is actually good, as it essentially kicks the new immune system into gear. She's had it looked at and the docs were confident enough that she wasn't required to stay in hospital. So while it's unfortunate that's she's experienced this (in the form of a rash on her arm), it appears that it's not too alarming, so I'm confident in her progress.

At this point, though the process is unpleasant and the days difficult, all the key metrics seem to point towards as speedy a recovery as possible, given the treatment she's undergone. Fingers crossed!