tag:blogger.com,1999:blog-49420642475723936122024-03-06T02:56:40.746+00:00Living with leukaemiaAn attempt to capture my thoughts & feelings, provide progress updates & also links to support & information in case people want to follow-up or need help themselves. Also the occasional rant or update re. gadgets/gizmos & tech in general...Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.comBlogger46125tag:blogger.com,1999:blog-4942064247572393612.post-84462429089922755212010-07-25T22:07:00.001+01:002010-07-25T22:10:00.814+01:00Tech Update: Android apps & 3D TVThe only annoying thing about seeing Toy Story 3 today (which if you haven't guessed from my Tweets, is IMHO totally awesome; how Pixar can make such great hits that appeal to all audience ages time and time again amazes me), was seeing the Sony 3D TV advert.<br />
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Why was it annoying? Well seeing it on a non-3D TV as a regular TV advert in all its blurry "gory", I was very easily able to totally ignore it. Now though, having seen it in its 3D digital clarity it makes me want to have a new 3D TV :-( What is genuinely staggering is the improvement in 3D capability/quality, as much as a fad that I thought 3D TV was, having seen it (albeit in the cinema) I can see this becoming de rigeur within the next 2 years.<br />
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I think the major manufacturers (Sony, Panasonic,Samsung) though have missed a trick by flooding the market with non-3D TVs prior to 3D launch, I for one cannot afford nor physically place a brand new TV having only got one about 6 months ago. Their loss, well at least for now...<br />
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...Maybe I'll spend any money I have on the <a href="http://issue.igizmo.co.uk/1V4c3dc315835cf656.cde/page/4">dual-screen laptop coming from Toshiba</a>...<br />
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<b>Android Apps</b><br />
There's a tonne of useful/entertaining/fun apps out there. One distinct advantage of the Android Market over the Apple App store is that you can download a paid-for Android App and trial it for 24 hours. You need to provide payment details up-front but if within 24 hours you decide the app isn't for you, you can get it refunded.<br />
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The only thing I don't like about the Android Market is that hunting for that app you really want is a total pain. From the market app, you cannot filter on free apps for example but I have noticed that there does seem to be a search syntax that could be employed (to find apps from a certain publisher for example) that I haven't investigated yet.<br />
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A way around this is using websites such as <a href="http://www.androidzoom.com/">androidzoom</a> and <a href="http://uk.androlib.com/">AndroLib</a> that provide a search/filter facility. I believe with FroYo (Android 2.2) there will be some Market enhancements that incorporate this kind of capability directly into the handsets.<br />
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Anyways. I am, however, a *total* cheapskate when it comes to this sort of thing and have only ever downloaded free apps. Here is a list of the current ones I am using that may be of use to you, I'm assuming only Android users have made it this far :-)<br />
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First up - <a href="http://www.androidzoom.com/android_applications/shopping/barcode-scanner_clh.html">Barcode Scanner</a>. Essential to access many other services such as quick access to download other apps, shopping comparison etc.<br />
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Next most essential I would say is <a href="http://www.androidzoom.com/android_applications/communication/lookout-mobile-security-free_kuz.html">Lookout</a> which is pretty awesome. Virus protection, back-up (contacts, call logs & photos) plus a phone finder feature.<br />
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Although Android does well with Twitter/Facebook integration, the respective <a href="http://www.androidzoom.com/android_applications/social/twitter_gofh.html">Twitter</a> and <a href="http://www.androidzoom.com/android_applications/social/facebook-for-android_zst.html">Facebook</a> apps do provide a bit more functionality.<br />
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Again, the native Android browser is very good but <a href="http://www.androidzoom.com/android_applications/communication/dolphin-browser-hd_gskf.html">Dolphin Browser HD</a> is much superior with tab browsing & add-ins for things like Speed-Dial, Translate and saving bookmarks to the SD card.<br />
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<a href="http://www.androidzoom.com/android_applications/productivity/call-meter-ng_ebz.html">Call Meter NG</a> is key if you want to check you are still within your call/data plan.<br />
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Other really useful utilities:<br />
<a href="http://www.androidzoom.com/android_applications/productivity/printershare-droid-print_egw.html">PrinterShare</a> - allows you to print from your phone to registered printers. The free version will allow up to 20 prints (after which you can buy more). The $4.95 version allows free printing to WiFi printers, yet to try this out...<br />
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<a href="http://www.androidzoom.com/android_applications/multimedia/zumodrive_fnwo.html">ZumoDrive</a>. Cloud computing storage. Allows you to sync PC files up to 2Gb that can then be accessed through your phone, including streaming of your music.<br />
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There are a lot of File Manager apps, but <a href="http://www.androidzoom.com/android_applications/communication/estrongs-file-explorer_cc.html">EStrongs File Explorer</a> is my favourite, especially as it makes it a doddle to access files shared on your (WiFi) LAN.<br />
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Similarly there are a number of "torch" functions but <a href="http://www.androidzoom.com/android_applications/tools/led-desire-light_gzjm.html">LED Desire Light</a> is my favourite as it actually uses the camera flashlight (as opposed to just displaying a bright, blank white screen) with varying degress of brightness PLUS you can send morse code messages too! As the name suggests, it is really just for the HTC Desire.<br />
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For eCommerce, there's:<br />
<a href="http://www.androidzoom.com/android_applications/reference/kindle-for-android_iftu.html">Kindle</a> - Amazon's e-book reader<br />
<a href="http://www.androidzoom.com/android_applications/multimedia/amazon-mp3_efpc.html">Amazon MP3</a> - DRM free music downloads<br />
<a href="http://www.androidzoom.com/android_applications/shopping/shopper_fdnc.html">Shopper</a> - scan barcodes and find how much you can save shopping elsewhere. Note, you'll get funny looks using this app, I was confronted by a store manager the other day who thought I was taking (illegal) product photos in store. When I calmly told them I was scanning the barcode to do an internet price comparison, their jaw dropped and they walked off in disbelief :D<br />
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eBay via <a href="http://www.androidzoom.com/android_applications/shopping/pkt-auctions-ebay_mjt.html">Pkt Auctions eBay</a><br />
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And for the Waitrose shoppers, <a href="http://uk.androlib.com/android.application.com-ocado-mobile-android-Bxzn.aspx">Ocado</a> has an app which on top of standard Ocado functionality lets you scan barcodes too.<br />
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For travelling:<br />
SatNav - the built in Google Navigator is simply superb and I don't think can be topped. Caution though if using abroad because of the (roaming) data usage will not be likely covered in your talk plan.<br />
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Check the traffic conditions before you set out with <a href="http://uk.androlib.com/android.application.com-orchardsoftware-android-jCCB.aspx">TrafficSync</a> or check when your next (and nearest) train will be using <a href="http://uk.androlib.com/android.application.com-dg83-dgtraintimes-BmBF.aspx">Train Times UK</a>. In the trilogy of Planes, Trains & Automobiles - for flight times, <a href="http://uk.androlib.com/android.application.com-conducivetech-android-lite-xjim.aspx">FlightStats Lite</a>is decent enough, the paid for version I believe integrates with TripIt.<br />
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If you're London bound <a href="http://uk.androlib.com/android.application.com-mxdata-tube-market-zniF.aspx">Tube Map</a> lets you plan a route and probably more essentially, get the status of the lines!<br />
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More fun than travel as such is of course <a href="http://www.androidzoom.com/android_applications/social/foursquare_ean.html">FourSquare</a>and the excellent <a href="http://www.androidzoom.com/android_applications/reference/google-sky-map_jkp.html">Google Sky</a> for browsing the heavens.<br />
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Recreationally, I won't bother as to each their own here I think. If you are into eBooks though, free ones can be obtained and read via <a href="http://uk.androlib.com/android.application.com-aldiko-android-qpiC.aspx">Aldiko</a><br />
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I've yet to find a *really* good RSS app,so if anyone knows of an (free!) ones, please add a comment.Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0tag:blogger.com,1999:blog-4942064247572393612.post-60126682555490909362010-05-31T12:10:00.007+01:002010-05-31T13:38:41.291+01:00Day +318: BP, Laws & Chores (oh - still in remission too!)Feeling good this morning, ahead of household tasks and so have some time to make a long overdue blog update. I'm already thinking that today is Sunday though so the rest of the week will therefore be a shock, more later...<br /><br />To kick-off with, a couple of things in the news that I've seen various tweets about and can hold my tongue no longer.<br /><br /><span style="font-weight:bold;">First BP</span>. Indisputably one of the worse environmental disasters instigated by man. Undoubtedly BP have a responsibility and much apologising to do especially after the somewhat <a href="http://www.guardian.co.uk/business/2010/may/13/bp-boss-admits-mistakes-gulf-oil-spill">blasé remarks</a> when the CEO first went public. A question though, is BP entirely culpable though?<br /><br />BP were renting the <a href="http://en.wikipedia.org/wiki/Deepwater_Horizon">Deepwater Horizon</a> rig so does some responsibility lay with Transocean (the renters) or Hyundai Heavy Industries (who built it). E.g. do these things have a "service life" whereby they are not safe for rental after so many drilling hours, are there regular "check-ups" of the equipment before re-renting?<br /><br />Who allowed drilling to happen there in the first place? Someone must have authorised it and given the highly risky nature of such an undertaking, what precautionary and insurance measures were stipulated ahead of authorisation?<br /><br />I heard on the radio (I think) that this is getting so much publicity because it is happening so close to the US. Don't get me wrong, it's a disaster and I feel for the people affected as well as being saddened to the huge environmental impact but if this happened off a 3rd world country coast or mid-ocean, would it be so reported?<br /><br />Maybe my questions are naive but I think there is more to this than just pointing the finger at one source and surely now more than ever, alternatives to oil dependency must be relentlessly pursued.<br /><br /><span style="font-weight:bold;">David Laws</span>. Hmmm. To start off with I was rather annoyed with the twittersphere for all the anti-Telegraph sentiment for breaking this story as it struck me as somewhat hypocritical (I don't think there would have been as much furore were the individual a Tory or Labour MP).<br /><br />However, having just seen the <a href="http://news.bbc.co.uk/1/hi/politics/10195707.stm">BBC News article</a> suggesting that the Telegraph are now pursuing Laws' replacement, I do wonder what the heck that paper is up to. Yes, they are Conservative supporting but wake-up you guys - we are at a new dawn of politics, a real coalition. Please let's give it a chance, we all know (or should know) that we are in for a rough ride - let's get some genuine talent therefore at the helm to steer the best path possible and stop sniping at the government so that they can get on with what needs doing.<br /><br />So back to David Laws. He was wrong. But he admitted it and did an honourable thing. IMHO though his resignation should have been refused by Cameron and Clegg. Based on his stupendous education and background, I think Laws is the sort of person we need at this time of economic crisis. As such, as painful as it probably is for him (he is a very private person AIUI and this is what lead to the whole fiasco) he (and Cameron/Clegg) should do what's best for the <span style="font-style:italic;">country</span> and get him re-involved, maybe not as a central "mouth-piece" figure, but certainly central to getting this country back on the right economic footing.<br /><br />As a regular Tory voter (no, I'm not sorry) in the spirit of coalition I find myself siding with those on <a href="http://twitter.com/#search?q=%23ISupportLaws">Twitter who are supporting David Laws</a>.<br /><br />Okay - enough of that but one more serious thing: I'm still in remission! I got the results from my 9 month <span style="font-weight:bold;">biopsy </span>back when I went to Oxford the other day. Blood counts are generally good and the BCR-ABL level was 0%, excellent news! My anniversary biopsy is scheduled in for 12th July, so fingers crossed for that too.<br /><br />Physically I'm seem to be doing well, I'm putting on the weight again (need to convert more to muscle though!), full head of hair and starting to look normal again. Problems seem to be dry skin and bloody painful feet. Makes it an issue walking big distances but I've been given the all-clear for swimming so am looking forward to not just watching my sons at the local pool but literally diving in and enjoying the fun!<br /><br /><span style="font-weight:bold;">Finally chores</span>...<br />Tomorrow will see me become a fully fledged house-husband. Sarah re-starts full-time 9-5 June 1st (congratulations again my love!) which means that I will take over the duties of cleaning, laundry, cooking, cleaning (there's a lot of it hence the double mention!) and school-runs/looking after Jake & Luke in the evenings. Oh yeah and looking for a job at the same time!<br /><br />If anyone has any tips to stop me from going nuts, it would be greatly appreciated!! Having got a stack of ironing out of the way this morning, I can safely say that it is essential to fold clothes after taking them off the line/out of the tumble dryer as it massively reduces the effort. Also, the best ironing music by far has to be "<a href="http://open.spotify.com/track/4Ibxu9kzAMZhvlIIf136ck">You Can't Stop The Beat</a>" from Hairspray, a surprisingly entertaining movie with a stellar performance by John Travolta. Boy can that man dance!<br /><br />Enjoy.Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0tag:blogger.com,1999:blog-4942064247572393612.post-26973837705761498092010-01-28T08:44:00.012+00:002010-01-31T16:39:59.015+00:00Day +198: First blog of the year...OK - so not the 1st of January and no "Happy New Year" except for that one of course ;-) but just making it by the skin of my teeth to provide an update in the first month of the new decade...<br /><br />Can't believe my last (progress) update was October '09 but as you may recall from that, things were looking good and I was starting to live a "normal" life. However, late November & early December I took a turn for the worse and was laid low with my temperature spiking all over the place and I was getting worried that I'd have to be re-admitted again. It was very stressful as clearly I didn't want to spend Christmas in hospital.<br /><br />Fortunately that passed - it could have been a combination of GvHD or the re-balance of medication we were trying but Christmas was at home with the family and was fantastic although tough. I managed to prepare much of the traditional lunch for Sarah, the boys and Sarah's parents.<br /><br />We had friends come round to see in the New Year which was a real boost and on New Year's day we went to Sarah's parents and spent a few nights there; that seemed to "flick a switch" in me that revived me in so many ways and things have been going great guns since.<br /><br />Consequently blogging has taken a back seat but at least Twitter let's me send quick updates...<br /><br />Anyhow, looking back at my last progress blog coincidentally that was the time of my first biopsy post transplant, the 3 month baseline marker. Tomorrow (Mon 1st Feb) is my 6 month biopsy. I'm apprehensive because of the procedure/sedation etc.<br /><br />I should remain positive though, I saw the consultant last Wednesday - he's very happy with progress (as am I to be honest):<br /><ul><li>I'm finally starting to put on weight (rather than just maintaining a level)</li><li>Some muscle is coming back (I'm doing more stairs and slightly heavier lifting at home)</li><li>Still getting tired, but this is more to do with trying to get my sleep pattern back in order plus I'm doing loads more around the house now<br /></li><li>Skin, Hair, Nails - all seem to be growing more normally now<br /></li><li>Been to the office a few times to catch up with folks, fix a few remote access problems and discuss with HR & my manager about returning to work...</li></ul>All in all then, things really do seem to be returning to normal and I feel happier being able to spend quality time with the family playing games, helping with homework and doing a lot of the domestic chores.<br /><br />Blood counts etc. also mean that I'm able to eat out more often and generally "be ordinary" - it's great!<br /><br />However, if I'm truthful, with such good results from the last biopsy I'm a little scared that they won't be as good this time. I'm also due to have my Hickman line taken out (after nearly a year of having it in, how scary is that??) so with that, the number of colds going around and the side effects I seemed to have from last time, I'm nervous and know that this coming week is going to be tricky, so bear with me!Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0tag:blogger.com,1999:blog-4942064247572393612.post-44382199646225696402009-11-19T13:26:00.002+00:002009-11-19T13:30:23.305+00:00Tech Update: Office 2010 beta + Wii iPlayer<span xmlns=""><h2>Office 10 public beta<br /></h2><p>Just downloaded & installed <a href="http://officebeta.microsoft.com/en-gb/products/">MS Office 2010 (public) beta</a> and using it now for this quick blog update. Big file to download (700Mb), installation required me to close Firefox (might be just my computer) but seems OK so far but still plenty to explore…<br /></p><p>Quite a few professional reviews out there already based on the tech preview, but if you like tinkering around with this stuff, the link is above to download it.<br /></p><h2>Wii iPlayer<br /></h2><p>A while back Nintendo made the Internet Channel free (it cost 500 points previously) allowing you to surf the internet using your Wii (and therefore your TV in the lounge). This is pretty cool in itself but better was being able to access the BBC iPlayer.<br /></p><p>However, the last Wii system update updated the Flash player and made the whole thing incompatible with the iPlayer. Anyways, yesterday the BBC made the fix available in the form of a dedicated iPlayer channel on the Wii main page.<br /></p><p>You need to "purchase" this (it's free) from the Shopping Channel to get it. It's the same for the Internet Channel by the way in case you don't already have it (purchase it for free from the shopping channel).<br /></p><p>Hopefully iPlayer navigation will be improved over time (for finding specific programmes by name or category for example) but it works and I've been able to catch up on some TV shows (Top Gear!). Picture quality is pretty reasonable and the fact that I don't need to hook up the laptop or anything like that is a blessed relief. Clearly the limitation is the fact that the Wii uses 802.11b/g so high quality streaming is going to be unlikely and playback is badly affected by downloads that maybe going on elsewhere on your network.<br /></p><p>Anyways, that's enough for now. Next up I want to play around with the new Excel 2010…</p></span>Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0tag:blogger.com,1999:blog-4942064247572393612.post-53856914125197727792009-11-05T18:07:00.004+00:002009-11-05T19:07:33.466+00:00Day +111: Goodbye October, hello new life...Well it's been a while again since I've blogged a decent update but at least I've been tweeting!<br /><br />October was a mixed month in that the first 4weeks (long month) were great - being home helping out etc. but the back end was a nightmare.<br /><br />Fundamentally that was the reason for "going dark" both in terms of keeping in touch but also mood and general well being. Basically I spiked a temperature and that meant I had to go back in to hospital on to the ward, I think it may have been triggered from the hip biopsy I had on the 16th October.<br /><br />Frankly it was depressing after being back at home but the temperature came down quickly thanks to strong antibiotics and I was able to negotiate going home after just one night's observation so at least I was home Sunday evening.<br /><br />However, the antibiotics combined with suspected mild GvHD meant lots of diarrhoea. This lasted probably a week and a half in total and as you can imagine was incredibly debilitating, humiliating, tiring and depressing to be blunt.<br /><br />The depression was quite bad and really it was the patience of Sarah, kind words from my Dad plus various messages and calls from people that came in out of the blue and generally thinking about all the folks that have been routing for me that saw me through.<span style="font-weight: bold;"><br /><br /></span><div style="text-align: center;"><span style="font-size:130%;"><span style="font-weight: bold;">THANK-YOU ALL!</span></span><br /></div><br />On the plus side, I learned though through talking to the hospital staff that:<br /><ol><li>TBI causes extreme lethargy that can come back and haunt you</li><li>Fatigue affects coping mechanisms you may have developed</li><li>Steroids cause mood swings</li></ol>Being the analytical/engineering type sort, this was actually great news for me to hear as it helped me <span style="font-style: italic;">understand my depression </span>and the dark thoughts I was having during that period.<br /><br />Hopefully this information is of use to others then to help them when they're feeling blue, even if you are generally healthy - tiredness is a problem:<br /><ul><li>Take time out & relax</li><li>Find time for yourself, re-focus and start again</li><li><span style="font-style: italic;">Talk to people</span>, be open & honest and rely on the support of friends & family you trust</li><li>The world <span style="font-style: italic;">will</span> go on either without you for a day or two or with you working at a reduced pace</li></ul>Anyway, back to more positive matters. Things have settled somewhat and as mentioned, about 3 weeks ago I had a hip biopsy performed (under sedation as you might imagine!!). Yesterday I received the full results from the test. Essentially there are 3 levels of test:<br /><ol><li>Visual under the microscope, crude but showed things looked quite good</li><li><a href="http://en.wikipedia.org/wiki/Fluorescent_in_situ_hybridization" target="_blank">FISH test</a>, a genetic test that was looking for the Philadelphia +ve gene that added complications to my leukaemia. The result from that indicated that things look good</li><li>Molecular test - this is the most in depth test and showed <b>0%</b> leukaemia cells</li></ol>Essentially it looks like the intense treatment and the prayers & positivity from you means I am now in remission!!!!<br /><br />Obviously this still needs to be monitored, biopsies will be conducted every 3 months, I am still on a lot of meds etc. but this is clearly amazing news and hopefully gives comfort to others that all of the above can work if you keep the faith, follow the professionals' advice, take your meds etc. and generally try and get on with things as normally as possible (i.e. being positive).<br /><br />So I just wanted to let you know, thank-you all and obviously ask you to still keep me in your thoughts(!) so that this may continue and I can start real recuperation now.<br /><br />I probably won't be be blogging anything significant from here on in, as to be honest I find that doing stuff around the home, helping Sarah with copious admin, staying on top of work/personal e-mails and of course helping with the boys is starting to turn full time again and quite tiring!!<br /><br />I will be tweeting the usual mundane stuff about hospital visits etc. :-) but will include general updates on status etc. as part of that. Plus geek boy that I am will likely start turning some attention to interesting (well to me anyway) technology & gadgets...<br /><br />Any please stay tuned if you can, thank-you again, love and peace to you, your families and all.<br /><br />Chris.Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0tag:blogger.com,1999:blog-4942064247572393612.post-53752494902140118072009-09-30T17:29:00.000+01:002009-09-30T17:30:19.180+01:00Day +75: September, an amazing monthSo main thing in case you hadn't heard - I'm home at last, discharged on the 25th Sept exactly 10 weeks from cell implantation and a total of 11 weeks hospital admission!!!<br /><br />The original (we thought agreed) plan was that Friday would be a weekend only trip (coming back Saturday night) with discharge later the following week to fit in with house logistics. However the hospital I think needed the bed (fair enough) as they started urging full discharge instead.<br /><br />Anyways, a lot of people bent over backwards (THANK-YOU!) and we left Friday afternoon. We hadn't told the boys, so when they came home and saw me there, they were *so* excited!!!<br /><br />The rest of Friday afternoon through to Sunday was a complete blur where I think I must have been living off of adrenaline, the boys energy and my delight at being home - basically The Joy Of Life!<br /><br />The flip-side unfortunately is that I most likely over did it and Monday was spent pretty much in bed sleeping. Tuesday pretty similar but since Friday I feel I have been able to help out a little at home too.<br /><br />Today, Wednesday, is my first day at the clinic so I am back over at The Churchill. I also needed magnesium (3 hours!) so visited the DTU (Day Treatment Unit). It's given me a chance to get some more sleep, the hospital transport arrived at 09:30 this morning which meant it's been a very tiring day already.<br /><br />It has however provided the opportunity to write this blog update at last - September has been an extraordinary month for me and of course a number of others, I owe it to capture something before the month ends.Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com1tag:blogger.com,1999:blog-4942064247572393612.post-86225049242637494242009-08-12T02:58:00.001+01:002009-08-12T02:59:50.252+01:00Day +26: Hello again!What a journey so far, I'll keep it brief - it's 2:30 in the morning and I can't sleep so hopefully this will help tire me out a little ahead of the morning of <span class="blsp-spelling-error" id="SPELLING_ERROR_0">meds</span> to come.<br /><br />This is obviously my first blog update for a while, not sure if I'll be updating on a regular basis but (as you may have guessed) my strength is coming back (otherwise I wouldn't be doing this!) so we'll see.<br /><br />A brief recap then of things since my last update:<br />Day 0 - this was the last day of <span class="blsp-spelling-error" id="SPELLING_ERROR_1">TBI</span> (total body irradiation) and the introduction of the stem cells. Everyone was telling me that the stem cell <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">transfusion</span> would be an anti-climax as it's just bags of blood going in. How wrong. The American cells were very thick and required real effort the French cells seemed better. However the steroids given beforehand had me climbing the walls and I reacted badly to the preservative used for the cells causing real problems over the following days.<br /><br />Eventually that sorted itself out and fundamentally the rest of the time has been just recovery. For a long time (as my blood was completely devoid of white cells) I was permanently fighting off high temperatures through a cocktail of tablets and IV anti-<span class="blsp-spelling-error" id="SPELLING_ERROR_3">biotics</span>/anti-fungals. I had a <span class="blsp-spelling-error" id="SPELLING_ERROR_4">naso</span>-<span class="blsp-spelling-error" id="SPELLING_ERROR_5">gastro</span> tube for feeding which was quite uncomfortable but effective.<br /><br />More recently my blood counts are starting to come up (no where near normal levels) but enough where it looks like the doctors are willing to withdraw some of the anti-<span class="blsp-spelling-error" id="SPELLING_ERROR_6">biotics</span> soon to see if I can cope without them.<br /><br />Also I've been feeling stronger in myself and have started doing some exercises in bed to try and get me ready to do things like sitting out of bed and going for short walks.<br /><br />I still tire relatively easily, especially after things like bed baths, so there's a long way to go still but I definitely feel I'm well on the road to recovery.<br /><br />Fairly soon too it looks like I'll be disconnected from the heparin which will be great as that will provide a level of freedom.<br /><br />Anyway, that's it for now - my sincere thanks and love to those who've been in touch one way or another with messages of support and best wishes, it's really appreciated knowing there's so many folks out there rooting for my recovery - thank-you!Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0tag:blogger.com,1999:blog-4942064247572393612.post-6135327735369832012009-07-14T19:21:00.008+01:002009-07-14T19:44:25.789+01:00Get ready the French...Quick update on Bastille Day seems appropriate given that one half of the stem cell infusion I'll get on Friday is from the remaining French bag.<br /><br />Today is Day -3, I've had 2 TBI sessions (Total Body Irradiation) - seems OK so far other than being quite tired directly afterwards. I've also started <a href="http://www.patient.co.uk/showdoc/30003285/">Ciclosporin</a> and MMF (<a href="http://en.wikipedia.org/wiki/Mycophenolic_acid">Mycophenolate Mofetil</a>) both immunosuppressants to help the cell infusion take when I have it on Friday (basically I need for the cord stem cells to come in and see <span style="font-weight: bold;">me</span> as the enemy and start killing off my white blood cell capability and for <span style="font-style: italic;">them</span> to take over so that the leuakeamia is cured.<br /><br />TBI and the two drugs haven't caused too much in the way of side-effects at the moment but that is very likely to change next week, hence I'm burning up my BT Openzone credits here at the hospital while I'm still in the mood to be online and blog and stuff.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPcme0ojIMZPL-8vn5pxPX80va1cy-F92EbJiNKbq9t5VW5qQ-RkZMuFPlLKy1PstAhR9lvRYUFUv9HmwmeAYgxkoQ0e-G-MMOjCfAlaFHwhtpOrGpCeF3zNy3OhH1WuqohGsa53Qp2Uuq/s1600-h/001.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 150px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPcme0ojIMZPL-8vn5pxPX80va1cy-F92EbJiNKbq9t5VW5qQ-RkZMuFPlLKy1PstAhR9lvRYUFUv9HmwmeAYgxkoQ0e-G-MMOjCfAlaFHwhtpOrGpCeF3zNy3OhH1WuqohGsa53Qp2Uuq/s200/001.jpg" alt="" id="BLOGGER_PHOTO_ID_5358387774624113202" border="0" /></a>Oh - and the move to the Churchill went very smoothly, <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0aT5cqsEw5bEkmD6Dq3znkdneutgR07lP_gng_dqfxtqWUUoOy_NCGl3tw-eL_hZz2Fix5P8tdMl9UJaKbZGHDpFxRLVbeadXxUakL98uPYqIDGrjNMuCeoCTJPmtwQ1zol9WPUaeXYU-/s1600-h/003.jpg"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 150px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj0aT5cqsEw5bEkmD6Dq3znkdneutgR07lP_gng_dqfxtqWUUoOy_NCGl3tw-eL_hZz2Fix5P8tdMl9UJaKbZGHDpFxRLVbeadXxUakL98uPYqIDGrjNMuCeoCTJPmtwQ1zol9WPUaeXYU-/s200/003.jpg" alt="" id="BLOGGER_PHOTO_ID_5358387856157326594" border="0" /></a>the new room is very nice but as might be expected there are teething problems, most noticeably for me is the mornings as my TBI is meant to be at 08:30 but so far I have been an hour late for both.<br /><br />Pictures: old empty blue room of Ward 5e versus new empty neutral room of Churchill, there was no bed or furniture when I arrived but that's taken care of now :-)Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com2tag:blogger.com,1999:blog-4942064247572393612.post-58026425304118122332009-07-10T19:31:00.008+01:002009-07-10T20:04:07.736+01:00Introducing my new girlfriend Dolly...Second day (day -7 with day 0 being cell infusion day) in hospital and last one in Ward 5E at the John Radcliffe, tomorrow the move to the Churchill hospital is a go; not sure what time exactly I'll move over, the plan is to get at least one chemo into me before going and then have the last one upon arrival as a welcome gift...<br /><br />So far chemo has gone well, I think helped by being pretty "healthy" ahead of going in - ideal weight, reasonable stamina enough strength to lift up Luke...<br /><br />Tomorrow will be the last day of chemo, Sunday a "rest day" and then Monday will be the start of radiotherapy, now with the advantage of just popping downstairs for treatment as opposed to being shipped back and forth from the JR to the Churchill and back by ambulance.<br /><br />I have a new girlfriend, Dolly (the drip-stand). Here are some pictures of her dressed for the shower and "au nature<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb8ZTSLacZ2beC1GpFD-PamSskagirr8MJsvblTGBSHfaWwlMyvU2-2EsGqbOLiQiV4E0pRdz-7Z1bzFtm278r5IDPToaqXVPFvc6Won0P8Ktu0yxq_SzIIKNMDPULtCwOuQRtjQsE-VC3/s1600-h/001.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 178px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhb8ZTSLacZ2beC1GpFD-PamSskagirr8MJsvblTGBSHfaWwlMyvU2-2EsGqbOLiQiV4E0pRdz-7Z1bzFtm278r5IDPToaqXVPFvc6Won0P8Ktu0yxq_SzIIKNMDPULtCwOuQRtjQsE-VC3/s320/001.jpg" alt="" id="BLOGGER_PHOTO_ID_5356906042621702274" border="0" /></a>l". <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlQ_RrUTE7OBc4wwARdkRMYKf8b8kx6hb4W0q30fCJhCAN_FFXlDHEkaD4NRmR8O7wlFlGUfKqOjEHHrE0_DMPxeIWW8e1txsNZTLHZOLq5VgbMkQJyqD6qgp073lh5hf0Fhngokifdpwf/s1600-h/002.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 180px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhlQ_RrUTE7OBc4wwARdkRMYKf8b8kx6hb4W0q30fCJhCAN_FFXlDHEkaD4NRmR8O7wlFlGUfKqOjEHHrE0_DMPxeIWW8e1txsNZTLHZOLq5VgbMkQJyqD6qgp073lh5hf0Fhngokifdpwf/s320/002.jpg" alt="" id="BLOGGER_PHOTO_ID_5356906222049105858" border="0" /></a>The heparin I tweeted about is a blood thinner to help protect my liver from the radiotherapy (total body irradiation - TBI) as TBI thickens the blood. It's a slow push syringe that squirts in 1ml over the course of an hour, it's the wide pump below the blue pump. I will be hooked up (continually) to this until day +30 so I have had to get used to taking Dolly into the shower with me and everywhere else...<br /><br />I also have loads of fluids pumped into me currently to protect my bladder from the effects of the increased <a href="http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Cyclophosphamide">cyclophosphamide</a> dose I am receiving as part of chemo (the other chemo is <a href="http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Fludarabine">fludarabine</a>), this will likely stop as of next week.<br /><br />Putting on loads of weight because of all the fluids, I'm getting <a href="http://en.wikipedia.org/wiki/Furosemide">furosemide</a> to make me go to the loo a lot to try and lose it and on that note, the call of nature beckons.<br /><br />Dolly, time for walkies...Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0tag:blogger.com,1999:blog-4942064247572393612.post-43187731196497187852009-07-07T15:35:00.006+01:002009-07-07T16:09:20.983+01:00Who shut JR???Well it could be me - the hospital phoned have confirmed today that I should come in tomorrow (Wednesday) night to start treatment the following day (Thursday 9th July); the cord has arrived safely from the US and is being held by the National Blood Service over at the John Radcliffe.<br /><br />Order of play then:<br /><ul><li> Arrive JR Wednesday night</li><li>Thursday chemo & heparin starts</li><li> Saturday chemo finishes</li><li> Saturday/Sunday - <span style="color: rgb(255, 255, 0);">WARD 5E AT THE JR </span><span style="font-weight: bold; color: rgb(255, 255, 0);">CLOSES </span><span style="color: rgb(255, 255, 0);">AND TRANSFERS TO THE CHURCHILL</span></li><li> Monday (13th) - radiotherapy starts, daily for 5 days</li><li> Friday (17th) - last day of radiotherapy and stem cells (from the US & the surviving French ones) transplanted in</li></ul><br />Even though I'm going to be in for 6 weeks at least, I'm packing light so the transfer to The Churchill is less of an ordeal, the bulk of the stuff will come over with the family on Sunday when they visit.<br /><br />We had a look at the new ward at The Churchill last week when I had my line cleaned - the rooms look pretty good but mobile reception (for me at any rate) looks a bit dodgy...Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0tag:blogger.com,1999:blog-4942064247572393612.post-21545916478998290272009-07-02T08:02:00.002+01:002009-07-02T08:38:51.991+01:00Puff DaddyVoluntarily headed off to the Churchill Hospital yesterday, as my Hickman Line hasn't been used for over a week I needed to ensure that it was still OK (or patent as the medics say) and not blocked through things like blood drying up in it etc. from lack of use.<br /><br />Fortunately everything was fine as in the worse case scenario of the nurses not being able to get it working I would have to have had a new line :-(<br /><br />Whilst there though I was able to find out the results of my bone marrow test from the other week - it confirmed that I was still in remission and my <span class="zem_olink">Philadelphia Chromosome </span>ratio had dropped from 4.5% to 0.06% which is excellent news (when first diagnosed it was around 82%...)<br /><br />This is thanks to the Imatinib (Glivec) tablets I take daily, however there is one uncomfortable side effect that is exacerbated by the heatwave we are having, fluid retention that is causing my feet to look like bags of jelly at the end of my legs. My feet are too swollen for shoes and it's proving difficult to get into my sandals!<br /><br />I've been prescribed <a href="http://www.patient.co.uk/showdoc/30002364/">Furosemide</a> which seems to be working by making me pee like a cart horse to be blunt, which is fine when at home but caused some severe difficulties when we were stuck in the <a href="http://www.bucksfire.gov.uk/BucksFire/News/2009/Cartransporterfire-M40%28picture%29.htm">M40 traffic jam</a> <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="http://www.bucksfire.gov.uk/BucksFire/News/2009/Cartransporterfire-M40%28picture%29.htm"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 173px; height: 126px;" src="http://www.bucksfire.gov.uk/NR/rdonlyres/67051EA7-95E7-4BCE-8833-FF233ACD92CB/0/m40lorry_web.jpg" alt="" border="0" /></a>I tweeted yesterday. Needless to say, plenty of country hedgerows were saved from drought on the drive back home along the back roads...Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0tag:blogger.com,1999:blog-4942064247572393612.post-9824559358066258862009-06-29T19:36:00.003+01:002009-06-29T19:41:23.173+01:00Umbilical Cord Blood - what & howAn under 3 minute video that gives some insight about umbilical cord blood and what a valuable resource it is.<br /><br />Sincere thanks to Andy at <a href="http://scirocco2morocco.blogspot.com/">http://scirocco2morocco.blogspot.com/</a> from where<br /><br /><object width="425" height="344"><param name="movie" value="http://www.youtube.com/v/cCvUOuX8_V4&color1=0xb1b1b1&color2=0xcfcfcf&hl=en&feature=player_embedded&fs=1"><param name="allowFullScreen" value="true"><param name="allowScriptAccess" value="always"><embed src="http://www.youtube.com/v/cCvUOuX8_V4&color1=0xb1b1b1&color2=0xcfcfcf&hl=en&feature=player_embedded&fs=1" type="application/x-shockwave-flash" allowfullscreen="true" allowscriptaccess="always" width="425" height="344"></embed></object>Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com3tag:blogger.com,1999:blog-4942064247572393612.post-48178589636990479062009-06-27T10:25:00.003+01:002009-06-27T10:33:31.508+01:00Transplant & ANT Day updatesFirstly re. the Anthony Nolan Trust day event - many, many thanks for everyone that showed up. Although not everyone was eligible to be signed up, when Sarah left at about 19:00 (she left early to be at home with me because of the news about the cord) about 16 people had been actually signed up.<br /><br />Apparently some more people arrived after that so although I don't think the magic number of 30 (the sort of "break even" number for ANT for such events), 16+ people were added which hopefully means 16 or so lives potentially saved somewhere in the world - you are heroes all of you!<br /><br />News about the cord progress - I received a call from the hospital, if I'm understanding correctly it sounds like a couple of cords were found with the initial search that yielded the one that got damaged the other day.<br /><br />It seems then that the hospital are in the process of securing a cord from the United States to supplement the viable bag from France - this is obviously very positive news and will keep folks posted as to what this means re. new dates for going into hospital.Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com2tag:blogger.com,1999:blog-4942064247572393612.post-92165468258539960572009-06-24T20:58:00.002+01:002009-06-24T21:10:03.251+01:00Transplant postponedHaving geared myself up psychologically for going into hospital tomorrow and received some wonderful words of encouragement and warm wishes from folks (many thanks for those!) I got a call earlier this evening at about 18:40 from the hospital with some bad news.<br /><br />You probably recall that I was due to receive cells from a single umbilical cord (normally two cords are used owing to the size of cords and the number of cells they contain versus those required). It was received in Oxford today and apparently was transported in 2 halves; one bag split.<br /><br />Although half the cord is still usable it is not enough to carry out the procedure and a new cord needs to be found, the team in the hospital is searching for one again through the Anthony Nolan Trust.<br /><br />Effectively everything has been postponed 2-3 weeks as radiotherapy will need to be rescheduled amongst other things.<br /><br />All in all not the news I wanted to hear this afternoon but trying to be philosophical about it, I get more time with the family, more time to build up my strength ahead of chemo etc. and who knows, maybe an even better match may be found.Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com1tag:blogger.com,1999:blog-4942064247572393612.post-58585370069680357812009-06-16T21:14:00.003+01:002009-06-16T21:43:29.373+01:00Anthony Nolan Trust day<span style="font-size:100%;">Sarah, my amazing wife, has found the time in-between managing everything else to arrange an Anthony Nolan Trust day at Jake & Luke's school next Wednesday (24th June).</span><br /><br />The session is from 16:30 to 19:30 at St. Edmund Campion school and has been set up to promote awareness of the Anthony Nolan Trust (ANT) and get more people signed up, especially people with ethnic & mixed-ethnic backgrounds as this is where the ANT do not have many people on their register.<br /><br />If you are in the neighbourhood, please feel free to come along!<br /><iframe marginheight="0" marginwidth="0" src="http://maps.google.com/maps?oe=UTF-8&sourceid=navclient&ie=UTF8&q=st+edmund+campion+%2Bmaidenhead&fb=1&split=1&ei=0QE4SoXANsahjAexwsWlDQ&cid=3075231439753768960&li=lmd&ll=51.51583,-0.752341&spn=0.006295,0.006295&iwloc=A&output=embed" scrolling="no" width="425" frameborder="0" height="350"></iframe><br /><small><a href="http://maps.google.com/maps?oe=UTF-8&sourceid=navclient&ie=UTF8&q=st+edmund+campion+%2Bmaidenhead&fb=1&split=1&ei=0QE4SoXANsahjAexwsWlDQ&cid=3075231439753768960&li=lmd&ll=51.51583,-0.752341&spn=0.006295,0.006295&iwloc=A&source=embed" style="color: rgb(0, 0, 255); text-align: left;">View Larger Map</a></small>Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0tag:blogger.com,1999:blog-4942064247572393612.post-19987938156217234452009-06-15T19:35:00.003+01:002009-06-15T20:50:33.733+01:00"You've got gallons of stem cells..."Today (Monday) was first of the harvest days, I've had 4 days of the <span class="blsp-spelling-error" id="SPELLING_ERROR_0">GCSF</span> injections and my lower back and breast-bone/ribs were really painful, to the extent I couldn't pick things off of the floor and have had difficulty sleeping.<br /><br />In a way then I was looking forward to the harvest but also apprehensive about it too because of the general procedure (see previous post). Anyways, we arrived around 08:20 right on time for our 08:30 appointment.<br /><br />Things kicked off with a general tour and overview and then bloods taken to see if a harvest would be worthwhile (i.e. had I generated enough stem cells for collection), this is a quick test that says definite yes, definite no or maybe; I was a maybe and this prompted another longer test that took about an hour to complete.<br /><br />So at about 10:10 the result was announced, they were looking for a number in the area of 8 or better. I was 60!!! Goodness knows then why the first test was so lukewarm then but it meant that it wasn't a wasted trip and the machine was prepped.<br /><br />This took a fair while to hook up and once all was ready I had a local anaesthetic to my arm so that they could insert the needle that would draw the blood out of my body, the return blood was hooked up to my Hickman line as expected. However, the machine started complaining about the return line pressure and I ended up with a needle in the other arm for the return flow.<br /><br />I was told that this isn't that uncommon as Hickman lines are designed for chemo and not the pressure of the "blood extraction machine" (there was a technical term they used but I've forgotten), it just made things awkward as my mobility was vastly reduced.<br /><br />The procedure is 200 minutes and fortunately I was able to sleep for the first 103. When I woke up I discovered that the machine variables had been tweaked to eek out more cells from me given my high count (this had been discussed prior to me being hooked up so I was OK with that).<br /><br />Spending the rest of the time was the nurses taking more blood (they were worried that I had spiked another temperature) and feeding me calcium tablets and milkshakes, a side effect of the procedure is that one of the anti-coagulants causes a transient calcium loss that causes a tingling in the lips, fingers, toes hence the calcium replacement measures.<br /><br />Unhooking was uneventful - just a bit sore - and we set off home. Just before we got to Maidenhead I received a call from the hospital indicating that I "had gallons of stem cells", this is great news as it means that I don't need to go back tomorrow (Tuesday) and I don't need to have anymore injections - woo <span class="blsp-spelling-error" id="SPELLING_ERROR_1">hoo</span>!<br /><br />A trip to Oxford is still on the cards for Tuesday though as it's the radiation test dose, at least though that's in the afternoon so tomorrow will hopefully be a less exhausting day.<br /><br /><span style="font-style: italic;">Footnote:<br />Vincent was asking more about the procedure, stem cells and my treatment - I'll explain as best I can...<br /></span><ul><li><span style="font-style: italic;">The treatment today was to collect <span class="blsp-spelling-corrected" id="SPELLING_ERROR_2">peripheral</span> stem cells for my own use, the <span class="blsp-spelling-error" id="SPELLING_ERROR_3">GCSF</span> injections stimulate the bone marrow to over produce the white cells (hence the bone ache) and the blood collection machine extracts blood from me, spins out the cells and returns the rest.</span></li><li><span style="font-style: italic;">The stem cells are to be used only if the umbilical cord transplant fails, so the stimulation of white cells (although I believe in some instances this is used for some transplant patients)</span></li><li><span style="font-style: italic;">The cells taken from me today, should they be used, will return me to my current remission state with a likelihood of relapse so the umbilical cord is key as that is my chance for longer term survival</span></li></ul><span style="font-style: italic;">Hope this answers the question!<br /></span>Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com2tag:blogger.com,1999:blog-4942064247572393612.post-64018182826658477832009-06-11T20:21:00.003+01:002009-06-11T20:44:25.905+01:00Harvest FestivalNot that I'll need it because the transplant will be fine of course but in case things go wrong, the doctors will "re-boot" me by injecting my own white blood stem cells back into me, this will of course mean I'm back in the remission state but let's not go there.<br /><br />In order to get these stem cells, I need to take a course of injections of something called <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Granulocyte</span>-colony stimulating factor or <a href="http://www.cancerbackup.org.uk/treatments/supportivetherapies/haematopoieticgrowthfactors"><span class="blsp-spelling-error" id="SPELLING_ERROR_1">GCSF</span></a>. These started today (Thursday) and carry on tomorrow, over the weekend and the last one will be after the first day of harvest (Monday) and the point of the <span class="blsp-spelling-error" id="SPELLING_ERROR_2">GCSF</span> is to stimulate the excess production of white blood cells so that they can be harvested and given back to me should that be necessary.<br /><br />Of course there are side-effects but they aren't too bad just ironic that they will mirror to an extent what alerted to the whole problem back in February, namely bone ache as there will be excessive (good) white cells crowding out.<br /><br />At the hospital before being discharged, I was asked if I wanted to do the injections myself. After picking myself off of the floor after laughing so much (I am better with needles now but still hate it and can't see myself doing it to myself) the option of the local GP and/or district nurse came up and that's indeed what happened today and will be the case over the weekend.<br /><br />Monday I'll be back at the John Radcliffe over at the <a href="http://www.blood.co.uk/">National Blood Service</a> for the harvesting to take place. The procedure is identical to the bone marrow donation (not test) process - a needle is put in one arm, the blood extracted and put through a centrifuge that spins out the white cells and the rest of the blood is returned through a needle in the other arm; the exception in my case is that as I have a Hickman line the returned blood will go via that instead. <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">Unfortunately</span> the line can't be used for extraction as it is too soft for that process.<br /><br />It takes about 3-4 hours to do the extraction and quite a bit of time to set up too, Monday will be a long day then and I'll be back on Tuesday to finish the process. Tuesday I <span style="font-weight: bold;">have</span> to finish at 14:30 as I then need to get over to the Churchill for my radiation test dose at 15:00.<br /><br />I think Wednesday I will be largely in bed!Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com3tag:blogger.com,1999:blog-4942064247572393612.post-59767737196229095272009-06-11T19:56:00.005+01:002009-06-11T21:44:57.205+01:00Dr. Bruce Banner...Dr. Bruce Banner was the <a href="http://en.wikipedia.org/wiki/Hulk_%28comics%29">Incredible Hulk</a> in case you didn't know; not that I'm being glib about it but every time I think about radiotherapy I can't help but think of the the opening sequence of <a href="http://vids.myspace.com/index.cfm?fuseaction=vids.individual&videoid=1777175">The Incredible Hulk TV series</a> from the late 70s. The consultant told me I was showing my age but it made light of the situation at any rate.<br /><br />Next Tuesday (16<span class="blsp-spelling-error" id="SPELLING_ERROR_0">th</span>) I will have a radiation test dose, this will allow the medical team to extrapolate and determine what dosage they need to apply during the transplant procedure - the key thing of concern are the lungs and not "over-cooking" them, things like the brain and heart are apparently very resilient to radiation and the risk there isn't so bad.<br /><br />The test dose will also get me used to the procedure - the radiation is only applied for 20 minutes or so but the set-up takes a long time as I need to be positioned "just right" within a perspex box before the dose is administered, the reason for the box is that it helps disperse the radiation more evenly apparently over the body.<br /><br />Because of my age and they think I can take it, my proper treatment will be in 5 doses (as opposed to 7 or 8), the point of the radiotherapy isn't so much to kill remaining cancer cells (although that may happen but the chemo is meant to take care of that) but more to "sterilise" the bone marrow to reduce transplant rejection (Graft versus Host Disease).<br /><br />Although the procedure is painless, side-effects will be tiredness, sensitive skin (not as bad as sunburn but more like '<span class="blsp-spelling-error" id="SPELLING_ERROR_1">sunblush</span>'), nausea/vomiting, diarrhoea, sore mouth (ulcers and dried up salivary glands) and hair loss (I've been guaranteed that I will lose my hair with this...)<br /><br />Turning green and getting really tall and muscular when I'm angry isn't on the list of side effects.Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com2tag:blogger.com,1999:blog-4942064247572393612.post-91507420676122623082009-06-11T19:10:00.004+01:002009-06-11T20:08:38.318+01:00Time flies when you're not in hospitalWell if you didn't know already, I was discharged from hospital last Saturday (6<span class="blsp-spelling-error" id="SPELLING_ERROR_0"><span class="blsp-spelling-error" id="SPELLING_ERROR_0">th</span></span>) - hooray! - and can't believe how quickly the time has flown.<br /><br />Despite being ready to go in the morning, logistics at hospital and home meant that it wasn't until early evening that I got home, it was fantastic though to sit and watch Robin Hood as a family and make a "pizza night" of it!<br /><br />Sunday was a quiet day for us all and was just an opportunity to catch up with things in general and for me to start helping out around the house some; it gave me an opportunity to get to grips with some tasks I needed to get on with at home, breaking 2 computers wasn't on that list of things to do but somehow I accomplished it...<br /><br />Monday a lot more hectic with school of course and Luke's swimming. I stayed in and didn't see much of Sarah but did get one of the computers working again better than before, but I think that's more luck and perseverance than anything else.<br /><br />Tuesday was busy as it was a hospital visit to the Churchill for a discussion with the consultant about the radiotherapy treatment (more on that separately) and a follow-up on the discharge - no problems on that front but they did see that although my blood count is coming up, it's not coming up as quick as they would like for the harvest (more on that separately too!) so they have altered my tablet medication slightly to hopefully help.<br /><br />Wednesday, morbid but necessary, we reviewed our wills and actually had quite a few amendments to make since they were drawn up in 2000 that took most of the morning and the rest of the day was more household tasks and an opportunity to drive Sarah around for a change. Also a trip to the dentist to ensure no infections there (which might jeopardise the transplant - yes you've guessed, more on that later too) and an unfortunate parking ticket as I didn't realise that they had changed the parking rules since February :-(<br /><br />Today (Thursday) - PAPERWORK!!! Blimey, I don't know how Sarah's been able to cope with me generating all this additional medical & governmental paperwork! Anyway, I was able to help out a bit with that and with both of us on the phone in the study it was like we were running a little business! Oh, and we're having our boiler replaced too because otherwise we wouldn't be hectic enough...<br /><br />Also today, my <span class="blsp-spelling-error" id="SPELLING_ERROR_1"><span class="blsp-spelling-error" id="SPELLING_ERROR_1">GCSF</span></span> injections started - I'll cover this in the blog about harvesting - so having moved from a week of practically being bed-ridden and nothing to do it's all gone manic (and <span style="font-style: italic;">very</span> tiring)!Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0tag:blogger.com,1999:blog-4942064247572393612.post-57778995703473312812009-06-04T21:58:00.005+01:002009-06-04T23:25:04.396+01:00Heart & Lungs...As mentioned yesterday, there is some work to be completed <span class="blsp-spelling-error" id="SPELLING_ERROR_0">pre</span>-transplant and some of that happened today.<br /><br />This morning I popped downstairs to the Cardiac Unit and had an echo test of my heart done. This is like an ultrasound but for the heart and bar some electrodes attached to me the principle seemed exactly the same.<br /><br />I didn't get to see anything as I had to lay on my side, but with my track record of things medical that was probably a good thing! Anyway, my heart showed up fine with a very very minor observation about my <a href="http://en.wikipedia.org/wiki/Mitral_valve"><span class="blsp-spelling-error" id="SPELLING_ERROR_1">Mitral</span> Valve</a> but certainly nothing out of the ordinary or causing concern to the medical team.<br /><br />Next up was an ECG - loads of electrodes attached all over legs, arms and chest that took several minutes to set up. All for a 15 second trace and then they were whipped off! No problems on that front either.<br /><br />Had a long chat with the Transplant Co-<span class="blsp-spelling-error" id="SPELLING_ERROR_2">ordinator</span> (she is absolutely brilliant) and got more details about dates and other stuff which I shall capture in another blog later (still waiting on some more details).<br /><br />In the afternoon headed over to the Churchill for my lung test - it was a breeze (ho ho), all fine there too. In fact the only problem as I understood it that with my low blood count, I didn't have enough haemoglobin to absorb all the oxygen I was able to inhale!!<br /><br />Didn't rush back to the JR, beautiful afternoon here so Sarah (she was with me all day) and I managed to spend some time in a lovely garden over at the Churchill which was wonderful.<br /><br />Pretty tired after all of this and hooked up with IVs for the night that should take me through to 3am :-(<br /><br />Oh well, the garden was nice!Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0tag:blogger.com,1999:blog-4942064247572393612.post-637651945339438622009-06-03T14:26:00.003+01:002009-06-03T14:57:23.281+01:00What happened to May???May for me simply fell off the calendar thanks to numerous hospital trips both planned and unplanned totally knocking me out.<br /><br />Thanks again particularly to Sarah and my Dad for standing by me so much through this with countless trips and visits but also thanks to Sarah's parents and the many wonderful friends back in Maidenhead who've helped look after the boys at a moment's notice.<br /><br />I’<span class="blsp-spelling-error" id="SPELLING_ERROR_0">ve</span> provided some updates as to what’s happened since the last blog update back at the end of April and will provide a view of what's coming up when things have solidified a bit more.Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com1tag:blogger.com,1999:blog-4942064247572393612.post-46163799936355137332009-06-03T14:22:00.000+01:002009-06-03T14:24:29.116+01:00Pre-TransplantCoinciding with my current stay at the “Hotel Radcliffe” is my ‘Work Up’ day – I am due for transplant in July but before that tomorrow (Thursday 4th June) I need to do some <a href="http://www.netdoctor.co.uk/health_advice/examinations/ecg.htm">ECG</a> tests, lung tests etc. to ensure I’m physically fit enough for the procedure.<br /><br />There is talk too of doing a bone marrow sample but I don’t think my blood counts are enough currently to warrant that and that will probably happen next week now.<br /><br />Other joys coming up will be a test radiation dose ahead the transplant procedure.Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0tag:blogger.com,1999:blog-4942064247572393612.post-72145104076609424142009-06-03T14:21:00.002+01:002009-06-03T14:25:00.056+01:00InfectionYou may recall from earlier postings that infection is one of the critical things to guard against during treatment due to low-to-zero immune system. Remarkably I seemed to have protected myself against it since March but in May it all came crashing down…<br />• 4th-11th May<br />• 20th-26th May<br />• And now, 31st May – still here, trying to get my temperature stabilised…<br /><br />All in all quite frustrating and in some instances alarming when my temperature kept climbing and I couldn’t stop shivering and shaking, but one thing that came out of it – for ages I’ve been (through my old doctor) under the misapprehension that I was allergic to Penicillin. I never used to be and it turns out that I never was! That at least makes things more manageable!Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0tag:blogger.com,1999:blog-4942064247572393612.post-8638415835131287432009-06-03T14:15:00.001+01:002009-06-03T14:20:42.504+01:00Phase 2 complete, sort of…So where I left off was 27th April (Sarah’s birthday for which I was able to organise a present and card – thank-you Internet!!) when I was 2 weeks into Phase 2.<br /><br />Basically Phase 2 seemed relatively uneventful and I seemed to be able to tolerate the awful Cyclophosphamide better for the last 2 doses. In so saying, the constant driving (and I was just the passenger!), chemo, blood & platelet transfusions really took it out of me and even the days where I didn’t feel too bad, by the time I got home I’d had enough and just wanted to spend time with Sarah and then the boys when they got home.<br /><br />The last full week of treatment was 12th-15th May (just after Jake’s birthday) but the last dose of Cyclophosphamide was 18th May and that wrapped up Phase 2, the only thing is that I’ve missed a couple of lumbar punctures mainly down to unfortunately hospital problems.<br /><br />I don’t get away that easily though, it’s likely they’ll give me the intra-thecals during the transplant window.Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0tag:blogger.com,1999:blog-4942064247572393612.post-44869129725888445622009-04-27T21:15:00.003+01:002009-06-03T14:25:31.672+01:00Phase 2 - hmmm...Phase 2 induction started last Tuesday. It's 4 days a week (Tuesday - Friday) over at the Churchill for 4 weeks and the main reason for it is to try and reduce further the presence of the leukaemia; remission doesn't mean it's gone "just" that normal cell production has resumed but the leukaemia has to be kept in check and that's the point of this consolidation.<br /><br />Treatment is notionally straightforward:<br /><ul><li><span id="mypaymentdetails"><div class="mypaymentcontent"><a href="http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Cyclophosphamide"><span class="blsp-spelling-error" id="SPELLING_ERROR_0">Cyclophosphamide</span></a> - intravenous, fortunately only 3 times (every other week) as this one seems to really make me sick. Oh yeah and it's trying to knock out the remaining strands of hair I have...<br /></div></span></li><li><span id="mypaymentdetails"><a href="http://www.cancerhelp.org.uk/help/default.asp?page=4023">Cytosine <span class="blsp-spelling-error" id="SPELLING_ERROR_1">arabinoside</span></a> - intravenous, each day whilst at the hospital. On me seems to be causing a low-level nausea that anti-emetics like <span class="blsp-spelling-error" id="SPELLING_ERROR_2">Ondansetron</span> look to be controlling<br /></span></li><li><span id="mypaymentdetails"><a href="http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Mercaptopurine"><span class="blsp-spelling-error" id="SPELLING_ERROR_3">Mercaptopurine</span></a> - tablets I take every night, seem to be OK on these</span></li><li><span id="mypaymentdetails"><span class="blsp-spelling-error" id="SPELLING_ERROR_4">Intra</span>-<span class="blsp-spelling-error" id="SPELLING_ERROR_5">thecal</span> - every Wednesday :-(<br /></span></li></ul>Plus of course continuing with the tablets I was on before.<br /><br />As mentioned, the <span id="mypaymentdetails"><span class="blsp-spelling-error" id="SPELLING_ERROR_6">Cyclophosphamide</span> (at least I think it's that) seems to be really affecting me - not just nausea but vomiting and vertigo too (I learned that vertigo isn't actually anything specifically to do with heights but the general sensation of dizziness and head spins).<br /><br />We're not quite sure what's causing it - I'm still suffering even tonight but far more manageable than when I was literally falling over from it.<br /><br />Anyways - felt a bit better yesterday (Sunday) and today but not 100%. Hoping that this week is easier.<br /><br />Apologies then that I've been out of touch but it was only yesterday that I fired up any form of computer as to be honest I've been lying down and sleeping as much as possible which I'm sure you understand!<br /><br />As it all starts again tomorrow - I may not be online too much until the weekend again.<br /></span>Chris Mauryhttp://www.blogger.com/profile/01869975423246785696noreply@blogger.com0