Electra & AML: The End Slowly Approaches

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I think we are in the final days. This is weird to think, a scary and horrible realisation, and in many ways made worse by the fact that I've thought so before. When you know the end is coming, when fates have been sealed and results determined, there is a tendency to interpret signs as significant and portentous, whether they are or not. In this instance, though, it's hard to see any other conclusion beyond the idea that we are in the final days of this journey.

Even though the timeframe of Electra's decine couldn't be accurately forecast, the overall pattern was better understood. From when she was released from the hospital, we were to expect a gradual but consistent slide into greater and greater fatigue and lethargy. Eventually, sleep would overtake waking hours completely and Electra-though still alive-would be wandering in the purgatory of a coma, forever travelling outside the borders of the land of the living, but not yet crossed over to death. After a few days, possibly a week, the true end would arrive. We were also told to expect an acceleration of this slide in the waning days of consciousness; when things took a turn for the worse, it was likely they would get worse quite quickly.

Over the past few weeks, there has been more of a roller coaster ride than I would have expected given the prognosis described above. There have been good days, and lengthy periods of time when Electra's state has markedly and noticeably improved. Specifically, about a week ago, she visited the hospital and insisted on an audit of the medications she was prescribed. These medications numbered a dozen or so, many taken several times a day. The upshot was that Electra was constantly taking pills-approximately 30-40 tablets per day, which-given that taking fluids made her queasy and required a break-meant she would finish her morning meds just in time to start taking the lunch-time ones. Coupled with the side effects of this many meds, her medical regime alone caused her nausea and fatigue and brought her quality of life down. So a simplification of the medication regime to four key meds was a serious boon.

Adding to this was the prescription of a meal-replacement shake. Electra had been surviving for weeks on a daily diet of a half-cup of skimmed milk and, if she was really hungry, a few small slices of apple. This is not a combination conducive to high energy levels. But the prescription of Complan, a meal replacement shake, meant she perked up and even managed to eat some real food as her appetitive was ever-so-slightly piqued.

The final piece to her re-energising puzzle was the visit of her brother Philip, probably the final person on her "must see" list. I think Philip (her bone marrow donor) has taken this harder than almost anyone else, and he and Electra are very close; the absence was causing them both strife. But Philip's second child was born a scant few weeks ago and he was almost immediately hit with severe tonsillitis, so a visit had to be postponed. But being able to spend a week together and say goodbye properly, really brought some colour back to Electra's life.

So for some time, Electra's condition, which had been characterised by constant fatigue and sickness, seemed to perk up a little bit. The last few days, however, feel to me like the start (or resumption perhaps) of the downward trend we all knew was coming.

Electra has slept quite a lot since being discharged from the hospital. Cancer is draining, the medications can exacerbate this and the result is the classic picture of someone unable to truly rouse themselves. Naps have been a constant feature for weeks. But over the past week, Electra's sleeping has become the dominant feature of her day. She would previously stir by 10AM or so; the past days have seen a 1PM wakeup and a 5PM one. Even the smallest tasks take effort almost beyond her reach. She has very little left.

Part of this is by choice. Electra has made the choice to forego future blood transfusions. She will continue to receive platelets (at the hospice rather than the hospital) to attempt to stem the tide of the haemorraging. But the blood transfusions, which provide red blood cells (the key factor in one's energy level) will no longer be administered, at her request. This was an informed choice; the benefits of the blood would decrease over time, giving less of a boost with each transfusion, without realising a corresponding drop in the time, hassle or stress associated with the process-each unit of blood takes at least two hours of hospital/hospice time on top of the waiting, admin, paperwork and so forth. It is a trying procedure and the effect it provided was declining. So she has elected to stop future blood transfusions. This will of course hasten the inevitable.

I have long been an advocate of choosing when and how to die. I think that modern medical science is one of our greatest and most admirable triumphs. But the focus has always been on extending life, giving more time at all costs. We strive for-and often achieve-quantity time while forgetting about quality time. Electra has chosen the latter. She would rather we have a small amount of good time rather than a lengthy, trying and painful ordeal. I support her choice and I think she's doing exactly the right thing. I ache to see her in agony, discomfort or so utterly devoid of energy and enthusiasm. She's said her goodbyes and seen those she loves. She's ready and when the inevitable comes, she will have lived a great life and lived on her terms and by her choices.

I just wish we could've pulled off the miraculous and garnered both quality and quantity. I don't want her to suffer as she has been, but seeing her death approaching is almost immeasurably draining. The selfish part of me just wants to carve out another week or two. I'm not ready to start missing her yet.

Electra & AML: The Shells of Dreams

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In one of my favourite movies of all time, the protagonist states that "Fear can keep you prisoner; hope can set you free". Throughout this ordeal, this basic precept is one to which I've tried desperately to adhere. We knew from the outset that this battle would be a protracted one, and without hope, it would be difficult to persevere. Cancer outcomes seem particularly affected by the patient's willingness to fight and their overall spirit, and the support structure surrounding the patient; to give up would be death and defeat and hope was the life raft to which we all clung. Even in the darkest days, we would cling to our hopes and dreams in an attempt to keep strong. But one of the worst aspects of this disease is the way it has, one by one, knocked down each dream we had.

First, it was the hope that the chemo would work on its own. Leukaemia was obviously serious, but we were assured time and again that the research had been excellent and the odds were much better than they'd been even five years ago. So we hoped chemo would kick this pernicious disease to the curb. That dream was dashed when Electra's genetic anomalies persisted. So, the total body irradiation and bone marrow transplant were scheduled, and our hopes were pinned on those. These were the nuclear option, and our dream was of complete remission and as speedy a recovery as possible. And for over six months, that's exactly what we had.

Then, the recurrence. Our dreams dashed again, we refocused, this time on the slim hope that the new chemo regime would cure her. Failing that, we wanted a period of calm, a window of health and well-being so that, if nothing else, we could at least travel one more time. See Rome or Bali, visit Montreal or New York State. We dreamed of a few good months together and the hope of a true cure. The cancer took that from us when the leukaemia came back almost immediately and Electra was officially terminal.

So the dream moves yet again. With the end now determined, we focused on the time leading up to it. Having been so miserable in the hospital, we wanted an easy couple of months for Electra. Peace, calm, a lack of pain and a comfortable transition at home. That's all we wanted. An easy an enjoyable end of days. But those hopes have been dashed.

Electra is largely pain-free, and that is a blessing. Although she experienced some pain early on as a result of a swollen vein in her leg, the pain management regimen they've got her on has that generally under control. But comfort and a general sense of well-being have proven much more elusive. Her nausea has come back in force, this time in response to any strong smells or tastes, or any sudden movements. Her energy levels have dropped dramatically, and she sleeps the majority of the day, either in short naps or full-blown sleeps. When awake, she has little energy and though the wheelchair we've gotten to get her around town helps immensely, she's often too drained to do much.

More frighteningly, she's started to haemorrhage. Though the full extent isn't really known, her lack of platelets has meant that she bleeds and bruises easily. This started with bleeding gums and nosebleeds that wouldn't stop. It has since expanded to a bleed behind her left eye rendering that eye mostly blind. It also leaves small red dots on her skin and darker patches in random locations. Whereas the plan was for her to receive a platelet transfusion of one unit each week, she has had to go into the hospital three times in the past week, and has received two units each time. The dream of an at-home convalescence has become a reality of three or more hospital trips per week, sometimes lasting more than six hours.

I said in my last post that some of these symptoms-though not huge on their own-are harbingers of what to come. I'm more convinced of that than ever. Though we've never been able to predict how much time is left, I'm less confident now than I've ever been before. Electra has had time to recover from the busy week I discussed in my last post and yet remains weak and tired. She is bleeding and nauseous and often uncomfortable. Our final hope, the dream we so desperately grasped for seems as futile as all the rest. All we wanted in the end was a little more time and to see Electra comfortable and at ease. It seems cancer could not even grant us that. Fuck cancer.

Electra & AML: Spring update-medical

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So, I've committed the archetypal blogging faux-pas: not blogging. It's been well over a month since my last post, despite my plans to post more frequently. Those plans still exist, and I do intend to develop a better rhythm and post more frequently, I've just drifted a little so far. Again.

Part of the reason for this is that Electra has been out of the hospital for most of the last month, so it's been a comparatively quiet time. However, that is a clearly relative term and there has been loads that's gone on, so let me first bring everyone up to speed. This post will mostly be an update, and I'll try to get (back) into a habit of posting more often and thus give some commentary, philosophising, etc. Because there is so much, I'm going to split it into a few different posts. This one is about the medical side of things.

Electra has now been out of the hospital for nearly two months, far-and-away the longest period of time since this whole thing began. On the surface this seems like a good thing, but the underlying reasons are unfortunately somewhat less rosy.

After each cycle of chemo, Electra's bone marrow is tested via biopsy (a very unpleasant procedure for her). This checks to see whether the cancer cells have gone into remission, and check other genetic markers to measure the progress of the treatment. After phase 1 of chemo, these tests came back positive, indicating that the cancer was in remission, which would portend a successful treatment. However, this turned out to be an incomplete picture. While the initial (and quicker) tests showed good progress, there is a subset of tests involving genetic analysis which take longer to come back. When these tests came back (shortly after cycle two) they showed a persistent genetic anomaly on chromosome eight known as trisomy-8.

The genetic abnormality is itself worrying and was identified earlier on in the treatment. The concern is that it might make her less treatable using chemotherapy alone. That it persisted through the first cycle of chemo was proof that this concern had come to pass. The chemo should still eradicate the leukaemia, but the trisomy-8 would still be there, meaning that the cancer would come back in time. Since chemo is traumatic on the body and each time builds up some resistance, it should never be repeated if it's possible to avoid doing so. So that means looking at a more severe course of treatment: full-body radiotherapy and a bone-marrow transplant, coupled with a more-intense dose of chemo (as if the previous rounds weren't bad enough!)

In essence, this is all about the bone-marrow transplant (BMT). The chemo and the radiotherapy are, at least in the case where a BMT is being performed, supporting steps. The bone marrow is the centre of the immune system. Stem cells, T-cells and blood cells are all produced here, and it's for this reason the leukaemia is dangerous: when the body's defence factory is compromised, every other system can fall prey to problems. In a BMT, one's bone marrow is killed off entirely and replaced with a new system. The radiotherapy and chemo destroy every trace of the patient's existing system and stem cell harvested from the donor are injected into the body where they are absorbed by the bone marrow and generate a new system. In some cases, an actual extraction of marrow from the donor may still be necessary, but in many instances, stem cells, filtered from a blood extraction are enough to generate new bone marrow in the recipient. It is this procedure that Electra is now set to go through.

Schedule of Events
The hospital where Electra was being treated (Worcester Royal) does not have the facilities to perform and monitor BMTs, so she has been transferred to Birmingham, who have been monitoring the case since the beginning. She will go into Birmingham Heartlands Hospital on May 6th (Friday). She will then undergo two days of intense chemotherapy and then be transferred to Coventry University Hospital for four days of full-body radiation therapy (in essence, one is put in front of an X-ray which is left on for 30 minutes; this is done twice a day for four days). Then it's back to Birmingham where she will receive the injection of stem cells. The stem cells will have been extracted from her brother (who is an excellent match, thankfully!) over the previous two days, using a special machine which filters blood so that the stem cells are removed and the remaining blood re-inserted into the donor's system.

So, basically, 7th/8th: chemo; 9th-12th: radiation therapy; 13th: BMT.

I'll do a post on the implications of a bone-marrow transplant soon. In short, it's not good. It's necessary, and far preferable to chemo only given her test results, but it will mean a longer and more intensive recovery period, greater restrictions on future activities for a longer period of time, and a raft of risks and side-effects. I don't want to scare anyone who reads this: it is still very much the right choice, and the overall prognosis is pretty good, but the road to recovery is much harder with a BMT than without.

I will post more in the coming days to discuss Electra's living situation (complicated), the implication of a bone-marrow transplant (complicated also) and more. But in the interests of keeping this from becoming a novel, let me just say that the outlook is good but scary. Please keep Electra in your thoughts as much as possible, the next bit may be very scary.

Electra & AML: The Big D

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So, there's a certain topic I have thus far avoided delving into: death. You'll have to excuse me if this post is a little less structured than some of the others, but that is a reflection of my thoughts, which are themselves a little unclear.

The fact of the matter is that this affliction is very serious. I know that's obvious, but I try to focus on the positives as much as possible: the advances in treatment, the high rate of success, the progress that Electra has made so far. But left untreated, AML has a mortality rate of 100%, often within months. The treatments have come a long way (a colleague of mine told me of her aunt who was treated several decades ago at a time when all they could do was a full blood transfusion every week or so). But they are not perfect, and as we've seen with recent revelations, things do not always go as smoothly as one would hope.

At the end of the day, the odds are good in this case, but nothing is guaranteed. Electra and I had "the death talk" the last time I was up, and she has been pushing me to make sure that I truly accept the possibility; that I genuinely take to heart that the worst possible outcome is possible, no matter how unlikely. She asked me whether I truly accepted that, and to be honest… I just don't know.

In a philosophical sense of the word, of course, we're all dying. Death really is the only thing we can be sure of in life, trite though that might be. And I engage in activities on a regular basis that dramatically increase my chances of dying (I'm thinking specifically of cycling in London, though I have no doubt there are others). So to be in denial about mortality seems foolish. But there's acknowledging that in a logical, academic way, and then there's really taking it to heart. And I don't know if I've done the latter.

I know I don't like to think about it, and definitely don't like to talk about it. Writing this blog post is a way of forcing myself to discuss the topic, and perhaps that's what it'll take to make me really internalise the concept. I guess I'm somewhat in a form of intentional denial; like the proverbial ostrich, perhaps if I refuse to acknowledge the possibility, that chance will disappear. Or perhaps it's simpler than that: I know what's possible, and know how easy it can be to get hung up on that idea and the accompanying fear, and am trying to avoid that. Because I am scared; whether I truly accept it or not, I do know the possible outcomes and there are some I don't want to consider. It may not be the healthiest way of dealing with it, though.

I'm generally a pretty good guy to have around in a crisis. When things go very wrong, I keep my cool, I assess the situation and I tackle things rationally and calmly. I freak out and get stressed by small to medium issues, but when the shit really hits the fan, I tend to become very focused. The upshot of this is that I tend to tackle logistics: what needs to be done, by when, what is the best way to achieve it, etc. My concern, I suppose, is that this coping mechanism may allow me to gloss over the bigger issues, the greater fears and perpetuate my denial, intentional or otherwise. And I'm clever enough to know that's not the healthiest approach in the long run. So I will try to accept it, whatever that means.

I am confident that Electra will pull through this ordeal with flying colours. Two years from now, I expect we will be stronger, healthier and happier than before, and will deal with the long-term ramifications of her treatment as they come (regular checkups, possible long-term medication requirements, etc.) I really do feel this is the case. But the shadow of that grim spectre does loom, quietly and forebodingly in the corner of my awareness, and it's time for me to accept his presence. I am confident that we will stave off his advances, but I should not (nay, cannot) ignore his existence.

Electra & AML: The Other Shoe

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This past week has not been easy. Throughout the course of Electra's treatment, there have been many hard times; when she's felt so sick she can't move, so tired she can barely speak or has been in such pain that she can do neither. But throughout all of this, we've had the positive outlook provided by the knowledge that all the key signs were pointing in the right direction. Electra had gone into remission after the first cycle, she was reacting well to the chemo and recovering quickly and generally her system was behaving the way one would hope. This made the tough times easier to deal with: you expect there to be some setbacks along the way (infections, fatigue, pain). But we were comforted to know that the key metrics, those that give the best indication of how she will react to the treatment, all showed positive. This past week, that all changed. I should note here that I haven't done much research into this yet, so it's quite possible I'll misunderstand some of this and so much of what I say here might be inaccurate, but I'll do my best from what I do understand.

Last Wednesday, Electra got test results back from her last bone marrow biopsy, which were taken after she completed her first round of chemo, several weeks ago. These results take longer to process because they involve genetic analysis. And the results showed the presence of a chromosome abnormality called Trisomy 8, meaning an extra set of genes on chromosome 8. This was detected initially, but the expectation was that the chemotherapy would eradicate this abnormality. It has failed to do so.

The upshot of this is that the chemo is likely to wipe out Electra's cancer, but it will return; maybe in a few months, maybe in a few years, but it will come back. Since chemo is by no means a silver bullet, and in fact should be avoided as much as possible, one cannot simply sit back and wait for a recurrence and hit it again with chemo (and why would you want to given the effects of the treatment?) So they are going to need to go with a more extreme type of treatment. Specifically, it looks like Electra will now almost certainly need a bone marrow transplant and possibly full-body radiotherapy.

The good news is that her brother Phillip is an excellent match for bone marrow donation (and apparently he doesn't even have to get a giant needle in the back to do it, they can now extract stem cells from his blood and grow the marrow, which is quite frankly awesome). And further, this treatment should have a positive outcome in the end, as the success rate is very high.

The downside is that the treatment is even harder to deal with than chemo alone. I don't want to overstate it, so I will write another post once I've done my research, but from what I know so far, it means that the recovery time is much longer, being measured in years not months. It means strict limits on interactions with children (obviously very limiting for Electra's career as a paediatric speech and language therapist), and strict limits on travel, especially foreign travel. It means she will be unable to make it to the wedding in June for which I'm best man, it means our travel plans to Rome, Munich and more are gone; it changes quite a lot. It also means that she will have to leave the Royal Worcester Hospital behind as they are simply not equipped to treat someone with this particular aberration. She will likely be moved to Birmingham, though we need to meet with a specialist to discuss where she would receive the best care and environment, and where she would be the happiest. But it makes everything much more complicated with visiting, and housing and all the rest.

On top of all that, Electra's neutrapenic phase has hit her like a ton of bricks. Apparently, my assessment of it as not-quite-as-bad-as-last-time was premature. It's now gotten much, much worse. She's picked up an infection again, so is running periodic fevers. She's tired a lot. But more than anything else, she's in pain. Almost constantly now. It seems she has picked up a potential fistula or fissure and will likely require surgery to correct it. That, however, has to wait until her immune system is back and her infection cleared. So in the meantime, she must endure agony and an increased risk of infection from that very fistula. It's a delicate balancing act between the risks of the surgery and the risks of infection that the surgery would help reduce. The end result is days or weeks of pain.

Electra has dealt with this well overall, though it's been the first real blow to her confidence and stoicism. Having to shift from "hard to deal with but ultimately good progress" to "actually much worse than we'd thought" has been tough. I admire her ability to stick with it, even if it takes some prodding from yours truly to get her there. But this whole discovery has been truly off-putting and has really hit her quite hard. Physically, it's been difficult and the painkillers (now at a much high dose) only just barely take the edge of some of the time. But emotionally, I think it has taken some of the wind from her sails. That being said, Electra will always regroup and come back even stronger and more determined, and I know that she will tackle this head-on and with tenacity.

As for myself, I don't know how well I'm handling it. I know it'll be OK in the end, but it's hit me pretty hard as well. I guess I hadn't realised exactly how much emphasis I'd put on the so-far positive results we'd seen from the tests. I'm still getting through the day, but have found myself angrier, run-down and less focused than before. I've had a few drinks, perhaps more than I should've, though I've pushed myself now to hold back on that, for fear that I could self-medicate too much. And of course, I stress eat, as I always do. Between that and my lack of gym motivation, the trousers and shirts are starting to feel a wee bit more snug than before. But I guess that's my normal arc: depression, followed by anger and frustration, followed by nose-to-the-grindstone and determination. And I think I'm moving into that phase now, so I will get back on that horse. But I'm not exactly cheered up by it all.

All is of course not lost. As I said, the long-term outcome of this treatment is good, and all our travel plans and the rest are not cancelled; merely delayed. But I would say that this has probably been the worst, most demoralising week we've had thus far.

Electra & AML: Diagnosis and the start of treatment

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So, since most people likely to be reading this know me in the real world, most of you probably know my girlfriend Electra as well. We've been together for about two and a quarter years thus far and though we've had our fair share of bumps and issues, things are good. However, the end of last year saw a significant piece of bad news come our way. On December 31, 2010, Electra was diagnosed with Acute Myeloid Leukaemia (AML), a rare and aggressive-though generally treatable-form of bone marrow cancer. She is currently undergoing chemotherapy treatment at an oncology and haematology ward near where she lives.

This posting is the first in what will undoubtedly become a series of posts as treatment progress. I'm doing this for a few reasons. One is to document the process as it happens. I have faith that we will emerge happy and healthy at the other end of treatment (I'll explain why in a minute), and I'd like to have a record of the ups and downs as this obviously represents a significant and life-changing event for her, and to a lesser extent myself. Secondly, I'd like to be able to keep everyone who loves and cares for Electra informed of her status and progress. I will be in touch with many of you over emails, phone calls, facebook and the like, but this is an easy way to broadcast to everyone who wants to stay informed, without inundating everyone with countless emails and calls. Finally, I feel there are things I need to get down. call it self-indulgence, catharsis or venting, I just feel I have things I need to get off my chest.

This entry will be a little haphazard, but I'll try to keep things organised as best as possible. You'll have to excuse me if I ramble a bit, my thoughts are somewhat discombobulated at the moment.

Timeline: diagnosis and treatment
Once the process of diagnosis started, things moved quickly. Very quickly. But in reality, this has probably been building for quite some time. Electra has, for several months, felt a general sense of ill-health. Sometimes, this was a non-specific sentiment of "I just feel off", but there were some specifics. She had a throat infection which was wiped out by antibiotics, but kept coming back. She'd have long periods of low energy and lethargy. She bruised easily and they took quite some time to heal. Symptoms like this are frustrating, because the picture is so clear in hindsight, but impossible to pin down at the time. We just assumed she was having a run of bad luck and catching every bud that went around; the fact that she worked with children (a demographic not know for its strict adherence to WHO/CDC biohazard regulations) merely served to reinforce the idea that she was merely unfortunate enough to catch every little germ that floated by. We figured she'd get past each infection and slowly build up an immunity to working with kids (something I might point out never has to be done when one works with computers!)

But it all came to a head this December. We'd travelled to Vietnam and Malaysia at the end of November, returning early in December. Right before the trip, Electra had come down with a sore throat, which her doctor believed to be tonsillitis. It had lingered but eventually she seemed to get past it on her own. But while in Vietnam, it came back with a vengeance. We were able to take advantage of a glaring public policy oversight in Vietnam which allows for the purchase of antibiotics without a prescription. While a terrible idea from a public health standpoint, it was convenient for us, and the antibiotics wiped out the tonsillitis again. However, on returning to the UK, the sore throat came back a third time. This time her doc took some blood to check for Mono (aka Glandular Fever). And that's when it started to get real.

The initial scan showed some odd results and a diminished blood cell count. Enough so to warrant another test; this latter test was performed on Dec. 24th-blood taken in the morning and tests done by the afternoon. This speed worried us as such expedited service can often indicate a high level of concern. Unfortunately, Electra had left her phone in the car, not understanding that mobile phones are actually mobile and should be all but surgically implanted into oneself at all times. Her GP told her there were some anomalous results and to schedule an appointment for Wednesday the 29th, the first day the practice would be open after Christmas. We went in first thing on the 29th and were informed that there were some strange results including "blast cells", malformed blood cells that can indicate leukaemia, though they can also be indicative of many other less-scary conditions. But this was our first indication that something serious might be amiss.

The GP referred us to a haematologist (blood specialist) for the morning of the 30th. He told us that for someone of Electra's age, leukaemia was the most likely concern, and scheduled a bone marrow biopsy for that afternoon. A strange and unpleasant procedure, this was completed as scheduled and we went home to worry. Results were to be ready by the next morning (New Years Eve). At 10AM on the 31st, our fears were confirmed. Electra was diagnosed with Acute Myeloid Leukaemia (AML), an aggressive form of bone marrow cancer. She was to start treatment that night, an equally aggressive schedule of chemotherapy.

Say what you will about the NHS. But in two days we went from an unusual blood test to a diagnosis and commencement of treatment. When there's something big, the system works. But it doesn't give one much time to contemplate.

What is AML?
Acute Myeloid Leukaemia is one of four major types of leukaemia (which can be any combination of acute or chronic and myeloid or lymphoblastic). It is relatively rare, especially in people under the age of 60 or so, but isn't entirely unheard-of. It is fast-acting and without treatment "universally fatal" (in the words of the consulting haematologist/oncologist).

Instead of the creation of normal blood cells (red and white blood cells and platelets), bone marrow in an AML patient produces malformed cells called blast cells. These are harmful to the body because they can reside in the bone marrow and inhibit cell production, as well as circulating through the body. Mostly though, the damage comes because normal cells are not produced in sufficient quantities.

The positive side is that AML is-from what I understand-fairly treatable. My father, a GP in Canada described leukaemia as one of the "big wins" in the cancer research community. 10-15 years ago success stories were few, but now, with the right chemotherapy, barring any complications, remission is often achieved and

What is chemotherapy? What specific therapy is Electra undergoing?
Chemotherapy is basically like poisoning yourself to save your life. It looks harmless, just like any other bag of clear fluid, but in essence, chemotherapy is some of the most advanced poisons we've ever devised. I should be clear that what I'm going to describe is based on my understanding from the haematologist; I am by no means an expert in the field.

In essence, chemotherapy destroys the cancer cells throughout the body but with major collateral damage: it also wipes out the body's immune system. Neither is 100% wiped out by the treatment, there are always some residual cells. The hope is that the immune system bounces back faster, and can go to work on the remaining cancerous cells.

With each successive course of chemotherapy, more cancer cells are destroyed, but there will always be some remaining cancer in the body. The goal of the therapy is to decimate the cancer population enough that the body can naturally eliminate all the remaining malformed cells through its natural processes. In fact, we all have malformed cells in our body; but for those of us without cancer, there are few enough that our body's defences eliminate them.

To use an analogy, a normally-functioning body is like a society: there are a few bad seeds, but a well-trained police force can ferret them out and keep their influence from spreading too far. On the other hand, in a cancer sufferer, it's more like Detroit, or Moss Side (in Manchester): the malcontents have taken over and the only remaining solution is to nuke the entire area from space and hope that the good seeds repopulate more quickly and establish order.

Electra's treatment involves four cycles of high-dose chemotherapy. Each is 10 days long, and involves three standard drugs and one highly-targeted experimental drug as part of a clinical trial. After the administration of the chemotherapy she has a 4-6 week recovery period. The start of this period (and the latter half or so of the chemotherapy application) is the dangerous time. This is what's known as the nutrapenic phase, during which her immune system will be largely suppressed. She is therefore susceptible to all sorts of nasties including bacteria, viruses and fungi. Therefore, antibiotics, antivirals and antifungals agents (plus antihistamines and god knows what else) will be applied as needed, her vitals monitored very closely and her food and surroundings carefully controlled. As her immune system starts to rebuild, some of these precautions may be relaxed, and she may even be allowed to leave the hospital for a few days (fingers crossed!).

How's she doing?
Overall, pretty well. Chemotherapy is obviously very taxing on the body and we are as yet in early days, so things can change. Electra is a stronger than she's normally able to admit to herself and I know she'll fight this, but it's not going to be an easy struggle. At the moment, she's very tired, not only from the medication, but also from adjusting to life in a hospital-it's hard to get a good night's sleep with an IV in your arm and a whirring machine 30 centimetres from your head. Not to mention the pokes, prods and checks from the nurses. But she's adjusting.

Otherwise, there are some time when things seem more dire. She'll get cold, nauseous, dizzy or all of the above. These times are scary, but the nurses and doctors are well-prepared for this and their confidence is reassuring. The arsenal of medications at their disposal have so far been successful in getting her back to feeling alright and I think they will continue to do so.

The biggest challenge is to overcome her natural sense of "I don't want to cause any trouble". This means that I have to browbeat her into reporting everything to the nurses-every bout of nausea, chill and shiver, every pain or dizzy spell. It means that she has to be open with visitors when she gets tired. Although visiting is great and cheers her immensely, it can also be quite tiring and there may well be a point where she needs to rest but is too polite to say so. Fortunately, her adaptability shines through here and she's become good and doing both of these things. It's hard to get someone so giving to think of themselves, but she's learning.

How am I doing?
Also pretty well. My work has been excellent; I've spoken with my line manager about this and he's been amazingly supported, something for which I'm very indebted to him. I'm currently working remotely from Electra's house and visiting her in the evenings; when her mother comes next week I'll return to the office and devise a strategy for this. I know that I have to balance my caring for Electra and supporting her with my work and my life. Six months is a long time and I cannot spend every single day there. Fortunately, with her parents, her friends and her colleagues, she will be well tended.

I characterise my outlook as cautiously optimistic. I'm not naïve enough to think that we're out of the woods (hell, we're just on the inbound edge at this point). Infection is a real risk and complications do arise. But Electra is young, healthy (you know, aside from the whole cancer thing) and has a good support system. We also seem to have caught this early. So with all that being as it is and the progress being made on the research front, I am very confident she will beat this and I will help her in any way I can.

What I need to do, though, is the same thing I've asked of her: to take some care of myself. So far, I'm not sleeping a lot. And it's really starting to catch up with me. I cannot give her the care she deserves under those circumstances, so I need to stay on the right track (and maybe not write blog posts until 1:30AM for that matter). I also put myself at risk of infection which would mean I couldn't see her at all, which helps nobody.

But again, I'm optimistic. I'm ultimately a creature of pattern and adaptation and I simply need to find the right balance. Also get back into the gym and get rid of this Christmas spare tire, but that's neither here nor there.

What's the plan?
So what do we expect going forward? What's the plan, what's the hope, what's the fear? Well, as I say, I am confident that we can beat this, but make no mistake: it will be a slog. This is our Stalingrad: a slow battle of attrition, won by inches and at great cost. It will be hard for Electra and hard for her friends, family and other loved ones. But we will break the back of this cancer and come out all the better for it.

This blog will be a good forum for tracking progress; I intend to update it as often as I can as more information arises. Use the keyword "Electra+AML" to locate all related posts, or subscribe to the RSS feed. These posts should also be imported automatically into facebook.

But I will also be trying to live a somewhat normal life much of the time: back at work in Guildford and at play in London. I may be leaning on some or all of you for my own support and will also likely try to organise some visits and support for Electra. In the meantime, if you wish to send something, please email/call/text/facebook message me and I'll give you the appropriate address. Cards, balloons, chocolates, etc. are all good; flowers are not due to infection risks. There is of course no obligation whatsoever. She has phone signal in her room and will shortly have internet access we think, so love and thoughts are always appreciated. But please remember the fatigue: calls are more draining than texts, for example. Visits are welcome, but there will be good and bad times depending on her energy, fatigue and immunosuppression levels. Please feel free to contact me at any time and I'll advise.

Thanks to everyone who's read this far; this is a long crappy road but the destination is worth it and I know you will all help us get there.