(See all posts related to Electra's ongoing treatment)
There's been one aspect of this whole affair which has really made things a lot easier, and it's something to which I feel I should give proper credit: my work. I'm not sure what company policy is in discussing the company by name in a public forum, so I'll leave it out for now; suffice to say that if you know me in person, you either know for whom I work or can ask me.
Overall, my job is pretty good. The people I work with are great and the environment is very welcoming. Although it's not what I would do with my free time were I a billionaire, as jobs go it's pretty decent, albeit underpaying. However, in response to this particular crisis, my workplace, and my line manager in particular, have really gone beyond what one could reasonably expect.
I called my line manager on January 1st, the day after Electra was diagnosed, and he was kind enough to answer; had I been in his place I probably would've ignored a work call on New Years Day, so he's already earning some brownie points. In my discussion with him, I explained the situation and prognosis, and my hope to be able to spend more time than usual with Electra while she underwent treatment, especially during the gaps between her parents' visits. His response, in so many words was "Don't worry about it. Focus on getting her well and let us know how we can support you and we will do so".
And this has been the case in practice. I spent the first week working remotely from Worcester, and met with my manager when I got back to Guildford (the city in which my office is located). I sat down with him to discuss a plan and he was again very supportive, indicating that I could take time off with shorter notice than normal, work remotely when necessary, etc.
The plan I've come up with is to spend roughly every other week in Birmingham (previously in Worcester), and to work remotely from Electra's flat. I'm fortunate in that much of the job that I do can be accomplished remotely, and others in my organisation work remotely with varying degrees of regularity, so the action isn't unprecedented. I've brought up a monitor and keyboard, bought a desk and chair, and have thus setup a little office in Electra's place. I work during the day (connected to the company's VPN), and visit Electra at night. During the other weeks, I work from the office in Guildford.
Being able to do this has truly been a boon to my sanity and Electra's comfort. Dealing with this situation is never fun, but would be so much worse, were I required to see her only on weekends and evenings; the latter is especially inconvenient and was untenable while she was in Worcester. I've observed this with one of my closest friends, whose boyfriend at the time had to undergo cancer treatment. She was told by her firm that she was to be at her desk during standard business hours and could visit only on her off time. Needless to say, this made things much more difficult.
During an ongoing treatment like this one, it is often the little victories that matter, and carry the most weight. This particular victory isn't really little, but obviously pales in comparison to any pending wins on the health front. But because my employer has been so understanding and so flexible, it has permitted me to spend more time with Electra when she needs it most, and that's a win for both of us, and I respect and commend them for that. They have earned quite a bit of loyalty from me for their actions.
Wednesday, May 25, 2011
Saturday, May 14, 2011
Electra & AML: Spring update-residence
(See all posts related to Electra's ongoing treatment)
As Kevin Smith would say, I'm not going to bury the lead here: Electra was kicked out of her house for having cancer. I'll just pause a second and let that sink in.
There is some more to the story of course, though not as much as one might hope to have it make any kind of sense. For the last year and a half or so, Electra has been living in Stourport, in the west Midlands. She was in a three-person house, renting a single room. Since her AML came to light, her parents have been renting one of the other rooms. This was a convenient arrangement, as it allowed her family to stay close to her; at any given point, there would usually be someone (Electra's mother, father or brother, generally) in their room, and I would be in Electra's (as would she when she was out of the hospital).
Then, in early April, Electra's landlord Keith sent her an email saying that he would "have to give notice" on Electra's room. He claimed to be very sorry, but his mortgage terms were changing, and he needed to rent the entire house out (i.e. all three rooms) starting in May in order to make payments. He further asserted that he was having trouble renting the third room (the master bedroom) because of Electra's "condition"; people would hear about the situation, and then back out.
Now, I understand that the house is a business, and Keith needs to protect his investment. That's fair enough. I can also understand why a potential tenant might be a little uneasy about moving into a house with one tenant who's rarely there, whose boyfriend is around half the time (and working from home all day during that time) and whose parents were sporadically there. But, there are a couple problems with this. First, Electra never told Keith she was OK with his divulging of her very personal medical info. Secondly, considered objectively, there were two rooms that were rented and for the majority of the time, two people there; sometimes myself and her mother, sometimes Electra and her father, etc. But both rooms were paid for fully and both were occupied.
In any event, what's strange is that Keith's claim that he'd ben unable to rent the third room out rather falls apart when it's revealed that the other tenant was informed that someone would move into that selfsame room on May 1st. The tenant was informed of this BEFORE Electra was asked to vacate. So it seems it wasn't that hard after all!
Finally, while I understand that such a decision has to be looked at from a business standpoint, asking someone to move out during the brief window between rounds of chemotherapy is-at best-cold or-at worst-downright heartless. Had Keith come to explain the situation and seek a resolution towards it, no harm would've been done. Instead, he simply stated that he'd have to give notice, but was really sorry. I'm not sure why he was so keen to empty the house by the end of April (the other housemate was also asked to vacate, though that had been planned for sometime and it was merely the date that was set as such). It really seems suspicious to me that he was pushing everyone out all at once.
I feel it necessary to point out, as well, that Electra paid her rent every month, promptly. She kept the house clean, didn't smoke (the only housemate who actually adhered to that rule!) and was basically an ideal tenant in every way. So there's no history of problems to justify such a drastic action. I should also point out that it's definitely illegal to kick someone out for having cancer, and certainly to do so without sufficient notice (though no move-out date was dictated, and end-of-the-month timeframe was certainly alluded to). I haven't decided exactly how i'm planning to respond yet, but I have a range of ideas from "ignore it" to "polite but diffident" to "ruinous". I'll update once we decide.
The upshot of this is that Electra has now moved to Birmingham. She's looked at a place fairly close to the city centre and had planned to buy it anyway, for a number of reasons. But now, instead of having a place in Stourport where she could stay until move-in date (her flat is still under construction), she was forced to move in the midst of her treatment. Luckily, her parents were able to rent a flat in the same development as her new place, but asking someone to do this during the most stressful time of their life is just wrong.
So, yeah. We're in Birmingham now. It's better in many ways-a more interesting city, close to the city centre, more accessible to the hospital, easier for me to come visit, easier for her family to fly into, etc. Birmingham is-in basically every way-a better choice. I just wish that it had been a choice, rather than being foisted upon us by someone else without the decency and compassion to allow a basic amount of leeway for extenuating circumstances.
As Kevin Smith would say, I'm not going to bury the lead here: Electra was kicked out of her house for having cancer. I'll just pause a second and let that sink in.
There is some more to the story of course, though not as much as one might hope to have it make any kind of sense. For the last year and a half or so, Electra has been living in Stourport, in the west Midlands. She was in a three-person house, renting a single room. Since her AML came to light, her parents have been renting one of the other rooms. This was a convenient arrangement, as it allowed her family to stay close to her; at any given point, there would usually be someone (Electra's mother, father or brother, generally) in their room, and I would be in Electra's (as would she when she was out of the hospital).
Then, in early April, Electra's landlord Keith sent her an email saying that he would "have to give notice" on Electra's room. He claimed to be very sorry, but his mortgage terms were changing, and he needed to rent the entire house out (i.e. all three rooms) starting in May in order to make payments. He further asserted that he was having trouble renting the third room (the master bedroom) because of Electra's "condition"; people would hear about the situation, and then back out.
Now, I understand that the house is a business, and Keith needs to protect his investment. That's fair enough. I can also understand why a potential tenant might be a little uneasy about moving into a house with one tenant who's rarely there, whose boyfriend is around half the time (and working from home all day during that time) and whose parents were sporadically there. But, there are a couple problems with this. First, Electra never told Keith she was OK with his divulging of her very personal medical info. Secondly, considered objectively, there were two rooms that were rented and for the majority of the time, two people there; sometimes myself and her mother, sometimes Electra and her father, etc. But both rooms were paid for fully and both were occupied.
In any event, what's strange is that Keith's claim that he'd ben unable to rent the third room out rather falls apart when it's revealed that the other tenant was informed that someone would move into that selfsame room on May 1st. The tenant was informed of this BEFORE Electra was asked to vacate. So it seems it wasn't that hard after all!
Finally, while I understand that such a decision has to be looked at from a business standpoint, asking someone to move out during the brief window between rounds of chemotherapy is-at best-cold or-at worst-downright heartless. Had Keith come to explain the situation and seek a resolution towards it, no harm would've been done. Instead, he simply stated that he'd have to give notice, but was really sorry. I'm not sure why he was so keen to empty the house by the end of April (the other housemate was also asked to vacate, though that had been planned for sometime and it was merely the date that was set as such). It really seems suspicious to me that he was pushing everyone out all at once.
I feel it necessary to point out, as well, that Electra paid her rent every month, promptly. She kept the house clean, didn't smoke (the only housemate who actually adhered to that rule!) and was basically an ideal tenant in every way. So there's no history of problems to justify such a drastic action. I should also point out that it's definitely illegal to kick someone out for having cancer, and certainly to do so without sufficient notice (though no move-out date was dictated, and end-of-the-month timeframe was certainly alluded to). I haven't decided exactly how i'm planning to respond yet, but I have a range of ideas from "ignore it" to "polite but diffident" to "ruinous". I'll update once we decide.
The upshot of this is that Electra has now moved to Birmingham. She's looked at a place fairly close to the city centre and had planned to buy it anyway, for a number of reasons. But now, instead of having a place in Stourport where she could stay until move-in date (her flat is still under construction), she was forced to move in the midst of her treatment. Luckily, her parents were able to rent a flat in the same development as her new place, but asking someone to do this during the most stressful time of their life is just wrong.
So, yeah. We're in Birmingham now. It's better in many ways-a more interesting city, close to the city centre, more accessible to the hospital, easier for me to come visit, easier for her family to fly into, etc. Birmingham is-in basically every way-a better choice. I just wish that it had been a choice, rather than being foisted upon us by someone else without the decency and compassion to allow a basic amount of leeway for extenuating circumstances.
Tuesday, May 03, 2011
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.
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.
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