Electra & AML: The News We Dreaded

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

I am afraid I must be the bearer of bad news in this post. Although the risks and potential outcomes of this disease have always been scary, and the recent prognosis has been especially dire, we always held out hope that we could beat the odds. Sadly, this is no longer the case.

Electra had a bone marrow biopsy this past Monday. This was to check on progress and while this would have occurred anyway in the course of treatment, it was especially important in this instance because Electra wasn't seeing the recovery speed that would be hoped for. At three weeks post-chemo, one would hope to see her immune system coming back in force, an end to the daily nausea and fatigue and her blood levels returning to normal. While the growth hormone (GCSF) had boosted her levels, they had fallen again. So the biopsy was ordered and was performed on Monday.

In a bone marrow biopsy, there are two types of samples: the aspirate and the trephine samples. The aspirate is the liquid goop inside the pelvic bone; the trephine is an actual cross-section of bone. Getting enough aspirate for a definitive sample is often difficult for patients who recently undertook chemotherapy, which is why the trephine is taken as well; however, the trephine sample takes a week to analyse, compared to a day or so for the aspirate. In Electra's case, they were able to get enough aspirate and a long section extracted from the bone which was smeared on a slide for further analysis. Between this smear and the aspirate, a definitive diagnosis was reached in a day, so we knew by Tuesday afternoon.

The diagnosis wasn't good. The sample was full of leukaemia cells; the cancer was very much still present. The FLAG chemo and DLI, for all its intensity, had failed to eradicate the disease. Although we haven't gotten the cytogenetics back, this indicates that the bone marrow tissue is Electra's, and that it would ultimately dominate the cellular growth. The chemo hadn't worked.

Those who have been reading my blog over the past weeks and months know what this truly means. This was our last chance. This was the only remaining option; our hail mary pass to try and beat this thing for once and for all. So now, there's nothing left to try. All the options are exhausted, all the hope dissolved. All that is left to Electra now is palliative care. This is the medical term for "waiting to die". We don't know how long this will be: it could be a few weeks or a few months, but the outcome is no longer uncertain.

At least, though, Electra has been able to leave the hospital. Although she is still neutrapenic and thus at risk of infection, there is no longer really much to be gained by maintaining a hospital residence. She has little enough time left that anything they could do would make only a small difference and would guarantee she didn't enjoy the time. Instead, we will try to live as much as we can for however long we have left. We will eat, live, love and try to enjoy everything we can until the inevitable end arrives (not only Electra and I, but her parents as well, both of whom are here in Birmingham). The other small victory is that the end will arrive largely pain-free and in relative comfort and what pain there is can be treated with pain killers. Electra will simply become more and more sleepy until one day she will painlessly slip into a coma. From there, we will have only a couple of days to say our last goodbyes and make our last peace.

I have to be honest: I don't know what to write here. I've been asked countless times over the course of this ordeal how I felt, and this hasn't exactly abated with the realisation that Electra, the girl I love so deeply, the most important part of my life for over three years, is going to die. And if I am at all honest in response, I have to admit that I don't know how I feel. How can I? I mean, I can spin it out for people, talk about how unfair it all is, how gutted and shocked I am, etc. But the reality? There is so much bouncing around in my head right now that I can't really nail down my feelings, and if I could, I don't know that I could put it into words.

To start with, this isn't really unexpected, but neither was it predicted. Leukaemia isn't as unbeatable as it was a few years ago, but neither is it a walk in the park; moreover, we've known since December that her odds this time around were highly unfavourable. So we've had time to prepare, both practically and emotionally. But whenever there is any hope, any chance that a cure might be attained, you hold onto that hope, at least to some extent. You have to, because to give up is suicide. But now that ever-faint glimmer has finally flickered to gloom. So I do feel defeated.

But of course, there's more than that. Some of it obvious. I regret where I didn't treat Electra as well as I should have. I regret the time we spent apart and that we never managed to live together. I regret that we never travelled to the places we dreamed of, that we never got to adopt our puppies (Gaius and Caprica) nor our kittens (Shockley and Bardeen). I regret that I never saw her parents' summer home that provided so many great memories for Electra and that she never got to introduce me to her favourite Montreal haunts and restaurants.

And I guess that's what strikes me the most of this. The empty spot in my future, the blind patch in my dreams. I lament what we never did, more than what we did wrong, for it is missed and unfulfilled potential.

But beyond that, I don't know how to feel. It may be that I'm avoiding my emotions or that I lack the facilities to really grasp them. It may be that this is just too big to take in all at once. I bury myself in the facts and numbers, in the prognostications and planning. And I've realised that this is my way of avoidance. Paradoxically, by focusing on the reality of the situation and accepting what is to come, it may be that I'm avoiding actually internalising it. All I know is that a huge part of my life is about to go missing and I can't honestly say how I will feel when that happens. And that's a little scary.

Electra & AML: Last Chemo Ever, For Better or Worse

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

So today was a rather significant milestone in this particular journey (well technically yesterday since I seem pathologically unable to get to bed at a decent hour ever). Today was Electra's last day of anti-AML chemotherapy. Ever.

The FLAG protocol that Electra is (was) on is a five-day course, and today was the fifth day. She is, of course, still in the hospital undergoing treatment, but that's more focused on the growth hormone to boost her red cell count, as well as the various prophylactic measures (antibiotics and anti-virals). The active application of chemotherapy is done. Further, this will be her last cycle in treatment of this disease. She will never have to undergo chemo again, barring (heaven forbid) the emergence of a different cancer later in life. Other than that, no more chemo. Buh-bye, thanks for the cancer-killing, no thanks for the immune system killing, the nausea, the hair loss and energy deprivation and the complete immunosuppression.

Of course, such a milestone as this is both relieving in one way, and foreboding in another. Allow me to explain. As this course of chemo comes to an end, the future forks into two distinct paths: curative or not. If she beats the odds and this course of treatment cures her, obviously she will no longer need the chemo. However, the ominous portend is that should this treatment fail, and the cancer relapse again, there are no real options. The chemo would never be successful again, no other realistic chemo options exist and her body would be hard-pressed to stand the strain. So the milestone is one we celebrate and observe, but with some trepidation.

The past year has been one of pain and suffering, fear and isolation, but love and hope as well; to preserve the latter, we are aiming for and hoping for a cure. But a frequent theme has been chemotherapy, and it is an amazing realisation to come to: she will not have to go through this again. Chemotherapy is very effective in many cancers, including blood and bone cancers. But it's a treatment so harsh and hard to deal with that it can often feel worse than the disease itself. So seeing it out the door is a cause for celebration, and is a victory in its own right.

I've said before (or meant to and forgot, possibly) that when dealing with a long trudge of a disease and treatment like this, that every victory, no matter how minor, matters. And this victory, though by no means the end of the struggle, is a key one. We needed the chemo, and it has kept her alive this long, but we never liked it. Chemotherapy is like cutting off your nose to spite your face; you poison yourself to get well.

So today, I saw, goodbye chemo. Don't let the door hit you on the ass on the way out. I appreciate everything you've done but hope I never see you again. And I'm reassured to know that, come what may, Electra certainly won't have to.

Electra & AML: Our New Years Eve Tradition

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

So, remember my last post? Where I discussed why it was so important to us to celebrate New Years Eve in style and the plans we had to do so? Well, turns out that was optimistic thinking and our continuing streak of bad luck had other plans in mind. For the second year in a row, Electra started chemotherapy on New Years Eve. Evidently this is now our traditional celebration.

Basically, we'd been given the conditional all-clear to celebrate NYE as we'd planned, as Electra's counts were high enough. The condition, however, was the she come in for one final blood test on Wednesday, December 28th and that this test would be the final decision-maker as to whether she was healthy enough to stay out of the hospital until the new year. And sadly, she was not; specifically, her white cell count had dropped further, which put her at an increased risk of infection. If she were to contract an infection, the course of chemo she'd selected would be impossible: since the chemo would decimate her immune system, any contracted infection would potentially be fatal, and would definitely be a horrible experience. So they would be unable to start the chemo if she were to pick up so much as a nasty cold, and the risk of doing so was too high. So New Years Eve as planned was off, and it was into the hospital the next day.

Of course, that didn't happen either. The hospital was short on beds, so her admission date got bumped back to the 30th (despite the fact that I'd treated us to a nice "last night out" dinner on the 28th, harrumph).  On the 30th, she was admitted back into the haematology ward, and the treatment began. First step was the insert a new Hickman (aka central) line, as hers had been removed when she'd been in remission. Then came the application of GCSF, a growth hormone which in patients such as herself spurs the production of more white cells, better enabling the body to handle the coming onslaught of the chemotherapy. This had the added benefit of taking her out of a neutrapenic state, meaning she felt healthier (for awhile) and the precautions for visiting are lessened.

On the 31st, the chemotherapy began. The course she's now on is called FLAG and has two chemotherapy drug: fludarabine and cytarabine. The latter is given over four hours, the longest single-drug duration she's had to deal with.

The upshot of all this, of course, was another New Years Eve in the hospital. As you can imagine, we were gutted to hear the news, as we'd really been looking forward to a nice, fun, relaxing cottage weekend with close friends, games, drink and sleep. Instead it was sterile environments, crappy hospital food, pain and intense medication.

Still, these sorts of things are, to a certain degree, what you make of them. So we did our best. I brought in a bottle of sparkling wine and a black forest cake and we rang in the new year (two hours early due to fatigue) with bubbly, cake, music and even a little in-room dancing. It might not be what we'd planned, but it was the best we were able to make of it.

And here's to 2012 being a better year, with a proper end-of-year celebration!

Electra & AML: Christmas update

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

A minor, but very vital part of Electra's recent re-diagnosis was the question of New Years Eve. Specifically, the timing of the recommencement of the treatment. As her relapse only occurred (or at least was identified) in the middle of December, the doctor informed us that she would need to start treatment either early in the new year, or in-between Christmas and New Year. We dearly hoped for the first option, an early January start. This, however, would depend on her blood levels; if her white cell count stayed high, she could start in the new year. Were it to drop, she would have to check into the hospital shortly after Christmas and begin treatment. At the risk of giving away spoilers, we were thrilled to be told that we should be able to make it to New Years Eve (pending a final check this coming Wednesday to ensure all was OK).

To some, this may seem strange. Indeed, when describing it to one of my closest friends, he quite reasonably asked why we wouldn't start immediately, regardless of the results of the blood work. You see, the efficacy of the treatment is increased when it is administered earlier. As chemotherapy is targeted to attack cancerous cells (with the healthy ones taking a hit as collateral damage), the greater the concentration of "bad" cells, the greater the force standing in opposition to the treatment, and the less effective it is liable to be. As is the case with most cancers, early detection and treatment can often have a profound effect. So why not start the minute the diagnosis is reached?

The reason is life. Not surviving, not just getting through, but life. We want as much life as we can possibly ring out of whatever time is left. Although we are obviously trying to maximise the quantity of available time, more importantly perhaps is trying to maximise the quality. When things are at their very darkest and it becomes increasingly harder to see in front of you, even the dimmest, most flickering light becomes a beacon, something to strive for and dream of. A flame in the dark is the very essence of guidance and hope. So each victory, each bit of enjoyment, each "win"… they matter. More than they ever have before.

The terrifying, horrible reality is that there is now a very real chance we may not get to spend next Christmas and New Years together. Though we were together last New Years Eve, Electra was diagnosed at 2:00 PM and connected to chemotherapy at 7:00. We did not truly have a New Years Eve. So, dammit, we will do so this year.

Fighting cancer is a siege, not a lightning war. The process is long, draining, and demoralising and is won not through pitched battles and intense triumphs, but through inches. When full victories are won, they come on the back of a hard-fought slog, digging through the deepest trenches of human physiology to stand upon the pinnacle of health and well-being, glorious victories celebrated all the more for the exhaustive battle of wills required to achieve them.

And in a years-long battle of inches, every win matters. We celebrate when the blood counts go up, we celebrate when the need for antibiotics goes down. A bit more energy or a bit less of a cough. A reduced temperature or an increased stamina. Every victory counts. And every victory, no matter how small, is treasured. And that treasure keeps you going.

New Years Eve is often overblown in importance. Ultimately, it marks the passing of a single day as much as it does a full year. But our traditions and customs define-to a very large extent-our priorities and our core values. And New Years Eve is therefore more portentous than other days. It is a chance to reflect on the past year and prepare for the next, to right the wrongs and further improve the rights. So we celebrate. We celebrate with friends; we celebrate with family; we celebrate with loved ones, and with love itself. So New Years Eve matters.

December 31st, 2011 will very hopefully see Electra and I celebrating the coming of 2012 with a group of close friends in a small cottage in the south of England. We will drink, we will eat, we will sing and talk and hug and love and be merry. The new year will bring tougher battles and more brutal fights, but those are for another day. For one night, for one glorious, celebratory, joyous evening, we will be as we were before cancer and before chemotherapy: hopeful, uncomplicated and revelling in all that this wonderful, flawed, beautiful world has to offer. That matters, because that is living. And we will live.

Electra & AML: The Reality of What's To Come

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

Today was the meeting. The meeting I alluded to in my last post, where we'd meet with the consulting haematologist for an idea of what our options were and what the prognosis and next steps were to be. It was a meeting we approached with some trepidation, as our last meeting had left us rather bereft of optimism or straws at which to grasp. Electra's parents have flown over to attend this meeting with us, support which is both direly needed and greatly appreciated. It also gave us a chance to try and assemble as comprehensive a list of questions as we could come up with, a task we did Thursday night.

The meeting and discussion went as well as could be expected. Unfortunately in this instance, that implies that the results were dire, though not wholly hopeless. I will go into greater detail as desired in future posts, but in essence, there are four treatment options presented:

1. Do nothing
2. Palliative care
3. Azacitidine with DLI (donor leukocyte infusion)
4. FLAG treatment with DLI.

The latter two options are two very different courses of chemotherapy, and the only options really worth considering. Do nothing, the full-surrender approach would give a life expectancy measured in weeks; that time period would be largely defined by discomfort and possibly outright agony. Palliative care wouldn't be much better; though the suffering would be eased through routine blood transfusions and pain killers, the prognosis would be clear: a short period of unpleasantness followed by an untimely end.

So, that leaves the two types of chemotherapy. Azacitidine is a much more mild form of chemo than Electra has experienced thus far. It requires daily chemo injections for seven days followed by three weeks of rest, all of which can be done on an out-patient basis (i.e. she wouldn't have to stay in the hospital except for the first cycle as a precaution). This pattern is repeated six times over half a year. It is, however, the "stall" to which I alluded yesterday. There is no chance that it would cure the cancer; all we would hope for would be extending her life and in the best case, temporary remission. If luck were with us (a condition that has not historically been the case), the leukaemia would be in remission long enough for more drastic treatment-another bone marrow transplant or a more intense form of chemo. In either event, though the chemo itself would be mild (no hair loss, minimal nausea and pain, etc), successful results of any kind are far from guaranteed.

The fourth option is the so-called "FLAG" course of chemotherapy (I will leave the details of the medications involved to the reader). This form of chemo lies in-between the azacitidine and a bone marrow transplant in terms of intensity. It will potentially cause hair loss, nausea, weakness, and all the other nastiness that went with Electra's earlier rounds of chemo. It's a one-week course followed by three weeks of recovery (all as an in-patient, i.e. requiring a full-time stay in the hospital). Only a single cycle is prescribed. On completion-and return to home-Electra would be routinely monitored, but should ideally be able to recover in decent time and hopefully achieve remission. Again, this would then involve a reassessment to determine the future course of action. This treatment carries with it a slim (5-10%) change of a "cure", the possibility that the cancer might not return.

None of these options are good ones. Do-nothing and palliative care are outright death sentences. As initially described to us, AML is "universally fatal" without treatment. The two courses of chemo improve the odds, but are far from certain: either course could fail to push the leukaemia into remission and each introduces risks of opportunistic infections or overtaxing her system. But there's that chance that they might buy some time, or–in the case of FLAG + DLI–maybe even cure her condition.

Electra had made her decision by the time the conversation with the doctor was concluded. It was to be the FLAG treatment. She cannot face daily injections for a week, repeated six times over the course of a half-year. And the azacitidine is guaranteed to never cure her condition. FLAG is the only bet for a cure, and will hopefully give her a leg up on the disease long enough to seek a more comprehensive cure if it does not achieve that miracle itself. Depending on her blood levels next Friday, this treatment may have to begin between Christmas and New Years, or may be able to wait until the very start of 2012. We are dearly hoping for the latter; having missed last New Year's Eve, it would be truly rewarding to enjoy this year's.

Those are the facts. And that's where my comfort ends. I can understand facts. I can evaluate and compare and rationalise facts. What I cannot do, what I am struggling with now and simply cannot truly wrap my mind around, is the emotional implications. None of these choices are good ones and the doctor was kind enough to not engender false hope. So I know that the risks are everywhere and the chance of success far from a sure thing. I get that. But I can't get used to that. I have spoken previously about the very real possibility that this might be fatal. But that possibility is more real than it's ever been, and I don't know how to face that.

Throughout this whole process, and especially over the last few months of remission, it's been easy to internalise the idea of mortality because it's felt like an abstract idea. It's like accepting that I might die riding my bike through London (or riding in a car or flying on a plane). The possibility is always there (and having recently been hit a second time on my bike is often a clear and present threat). But it's not at the forefront of my consciousness, nor is it an omnipresent worry. It's just a distant possibility that with diligence and prudence can be minimised. That is no longer the case; near-future mortality is now a plausible and even likely outcome, and I don't know how to handle it. Maybe I never will and never can.

Right now, I'm more confused and more messed up than I can remember being. I'm neither autistic nor sociopathic, but I don't always deal with emotion well, or clearly. I know I'm angry, I know I'm sad and I know I'm confused and upset at the unfairness of the world. Beyond that, I just feel adrift and isolated, confused and powerless. Our relationship has never been 100% perfect (whose is?) but it's been the defining feature of the last three years of my life and the most important relationship I've ever had. I've had many ideas of what I wanted for the future; whatever comes over the next year was not amongst those ideas. And that is scary, sad and terrifying, all at the same time.

Electra & AML: Spring update-medical

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


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 Other Shoe

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


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: 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.

Electra & AML: The road to recovery

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

So, a little update and some general housekeeping/response to a few bits of criticism.

First, the update, and the update is predominantly good news. In short, today was a day that brought some very welcome positive news. As I described in my first posting on the subject, in each cycle of chemotherapy, one's immune system is decimated along with the the cancerous cell (in this case in Electra's bone marrow). The hope, of course, is that the immune system starts to rebound more quickly than the cancer, and the body heals itself and also wipes out the cancer. Electra will go through four of these cycles.

Well, today marked a milestone in that Electra's platelet count has stabilised. The platelets, which are responsible for blood clotting, fixing bruises and so forth in the body, are one of the three types of blood cells which Electra was low on (the others being white and red blood cells). She's been receiving platelet transfusions during her treatment to keep these levels up-transfusions to which she's had several significant adverse reactions. However, over the past two days, her platelet levels have remained essentially stable (dropping from 47 on Friday, to 45 yesterday and 44 today). This is a clear and unambiguous sign that her body has started to recover, as normally they would've dropped to the mid-20s in this time period. So, her body has clearly begun to manufacture its own platelets, a very important step indicative of a recovering system.

The next key marker is to see her neutrophils recover. Neutrophils are the most abundant type of white blood cell and the body's primary defense mechanism against disease and infection-basically the Royal Marines of the body. It is the lack of these cells that puts her at the most risk of infection while at the hospital, requiring greater isolation, careful attention to diet and related precautions. If these start to rebound in significant numbers (likely to happen within the next week or so), so should be able to get out of the hospital for awhile and do some recovery at home. This will be an obvious boon for her spirits. Of course, it's also the harbinger of the second cycle of chemo; it's important to attack the cancer before it has a chance to regroup, so it's done while the body is at its healthiest and the cancer only starting to rebound. So the double-edged sword is that when you feel at your best, you get hit with round two of chemo. But that's for another week; for now, she has a home visit to look forward to.

On a potentially more pragmatic note, Electra's mother (who'd been visiting for two weeks) and brother (who'd been visiting for the last week or so) both left today, and she was sad to see them go, as were they at having to leave. Sadly, the is is the reality of Electra's situation; her geographic separation from her family makes visits hard and though the time is precious, real life insists they must eventually come to an end. I am here for her now and can hopefully pick up some of that slack, but when you're sick, I'm not sure that anyone or anything can replace your parents and siblings.

So, now onto some constructive criticism I've received about these posts. Electra feels that I've been sugarcoating the news for all of you, trying to soften blows and edit reality. And I suppose that's true to an extent; I don't relish the thought of being the bringer of doom and/or gloom, so perhaps I do try to put a positive spin on things; alternately maybe I'm just a glass-half-full type of guy (I'm not; I personally feel that in that allegory the glass is merely twice as large as is required). So, let me be blunt: things are looking up, but they were very hard for a time. Electra lost most of her appetite, she was nauseous and in pain for much of the day, her hair has started to fall out and she repeatedly spiked a fever. The doctors assured us that everything she experienced was to be expected and that we needn't fret, but it's hard not to. Every single day was a struggle for her for more than a week, specifically the week after chemo ended. Her body had been hit by ten days of intense and horrific treatment and responded by essentially shutting down. Fatigue was constant, dizziness frequent and she ached and felt like she'd been run over by a train.

This was hard for me to hear, and I know it was hard for her mother to witness. I don't know whether to feel relieved to have missed it, or guilty to have done so, but I expect to be here for much of the week after her 2nd cycle of chemo, which we're told will be even worse, so perhaps that will be my penitence for missing the first one. All I know is that while I am confident things will turn out well, and the doctors felt she was reacting as well as can be expected, that the end-of-tunnel light was tough to spot at times. It should be noted in my defense that I wasn't wholly coddling you all; Electra was in fact coddling me and not filling me in on all these details. Further, I don't want to alarm you, so perhaps I was softening a little-this aspect of the treatment is expected, she is very well monitored by very competent people. Were there anything to be alarmed about, we would be informed. But I don't want to seem like I'm sugar-coating: she will emerge victorious, but only after four very intense battles. This is Iwo Jima in 1945: an all-out battle with great cost and sacrifice but one I know we can win.

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.

Electra & AML: The fear factor

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


So, one of the biggest things with cancer of any kind is the fear. And I've been thinking about this a lot since we got the diagnosis. Am I scared? Should I be scared? What about Electra? Should she be? And in the end, I don't know. As weird as it sounds, I can't tell if I'm scared or not.

On the one hand, I'm a numbers guy, bound by logic and science. And the numbers, so far as I can gather, are promising. Electra has a lot in her favour: she's young and generally healthy. She's got good support (including yours truly) and the hospital seems really on top of their game. Her parents have sought some outside advice from a friend-of-a-cousin who happens to be a bone marrow specialist at the Mayo clinic who says the treatment she's on is good and generally pretty effective. So overall, I am confident that she'll get through this.

But there are times when it can be hard to see. Electra seems to react quite poorly to one of the chemotherapy drugs, called atopside. This is administered once per day for the first five days of her treatment, and every time she's gotten it (she's just completed day six now), she gets dizzy and nauseous, sometimes even weak and cold (like yesterday). When this happens, it can be scary. Because it's one thing to know that the numbers are on your side, it's quite another to see the one you love shaking from the cold in a very warm room as the walls spin around her.

It's like any other semi-irrational fear. For example, there are a great many people living in Canada or the UK who are afraid of snakes. Now, there are no poisonous snakes in either country, but that fear is imprinted on our brains and it can take hold, logic be damned. But the thing to do is accept that your body feels the fear but you control your reactions. I saw a World War Two show on TV once where a soldier who'd fought in D-Day said that courage isn't not being afraid, it's being afraid but doing what you have to do anyway.

So am I scared? Maybe a little. But the doctors aren't and that gives me hope. The trends back up my confidence-AML is beatable and she has a lot working for her. So when the bad times hit and she seems frail and weakened… well, that's just when it's time to steel my nerves and remember the reality: things are OK. There will be good days and bad, high energy and low. This is part of the process and she will get through it. We will get through it. Scared or not, we will push once more into that breech dear friends.

Electra & AML: Diagnosis and the start of treatment

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

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.