Thursday, 19 November 2009

Tech Update: Office 2010 beta + Wii iPlayer

Office 10 public beta

Just downloaded & installed MS Office 2010 (public) beta 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…

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.

Wii iPlayer

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.

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.

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).

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.

Anyways, that's enough for now. Next up I want to play around with the new Excel 2010…

Thursday, 5 November 2009

Day +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!

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.

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.

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.

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.

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.


On the plus side, I learned though through talking to the hospital staff that:
  1. TBI causes extreme lethargy that can come back and haunt you
  2. Fatigue affects coping mechanisms you may have developed
  3. Steroids cause mood swings
Being the analytical/engineering type sort, this was actually great news for me to hear as it helped me understand my depression and the dark thoughts I was having during that period.

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:
  • Take time out & relax
  • Find time for yourself, re-focus and start again
  • Talk to people, be open & honest and rely on the support of friends & family you trust
  • The world will go on either without you for a day or two or with you working at a reduced pace
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:
  1. Visual under the microscope, crude but showed things looked quite good
  2. FISH test, 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
  3. Molecular test - this is the most in depth test and showed 0% leukaemia cells
Essentially it looks like the intense treatment and the prayers & positivity from you means I am now in remission!!!!

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).

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.

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!!

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...

Any please stay tuned if you can, thank-you again, love and peace to you, your families and all.


Wednesday, 30 September 2009

Day +75: September, an amazing month

So 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!!!

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.

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!!!

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!

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.

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.

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.

Wednesday, 12 August 2009

Day +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 meds to come.

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.

A brief recap then of things since my last update:
Day 0 - this was the last day of TBI (total body irradiation) and the introduction of the stem cells. Everyone was telling me that the stem cell transfusion 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.

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-biotics/anti-fungals. I had a naso-gastro tube for feeding which was quite uncomfortable but effective.

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-biotics soon to see if I can cope without them.

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.

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.

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.

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!

Tuesday, 14 July 2009

Get 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.

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 Ciclosporin and MMF (Mycophenolate Mofetil) 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 me as the enemy and start killing off my white blood cell capability and for them to take over so that the leuakeamia is cured.

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.

Oh - and the move to the Churchill went very smoothly, 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.

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 :-)

Friday, 10 July 2009

Introducing 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...

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...

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.

I have a new girlfriend, Dolly (the drip-stand). Here are some pictures of her dressed for the shower and "au naturel". 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...

I also have loads of fluids pumped into me currently to protect my bladder from the effects of the increased cyclophosphamide dose I am receiving as part of chemo (the other chemo is fludarabine), this will likely stop as of next week.

Putting on loads of weight because of all the fluids, I'm getting furosemide to make me go to the loo a lot to try and lose it and on that note, the call of nature beckons.

Dolly, time for walkies...

Tuesday, 7 July 2009

Who 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.

Order of play then:
  • Arrive JR Wednesday night
  • Thursday chemo & heparin starts
  • Saturday chemo finishes
  • Monday (13th) - radiotherapy starts, daily for 5 days
  • Friday (17th) - last day of radiotherapy and stem cells (from the US & the surviving French ones) transplanted in

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.

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...

Thursday, 2 July 2009

Puff Daddy

Voluntarily 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.

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 :-(

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 Philadelphia Chromosome ratio had dropped from 4.5% to 0.06% which is excellent news (when first diagnosed it was around 82%...)

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!

I've been prescribed Furosemide 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 M40 traffic jam I tweeted yesterday. Needless to say, plenty of country hedgerows were saved from drought on the drive back home along the back roads...

Monday, 29 June 2009

Umbilical Cord Blood - what & how

An under 3 minute video that gives some insight about umbilical cord blood and what a valuable resource it is.

Sincere thanks to Andy at from where

Saturday, 27 June 2009

Transplant & ANT Day updates

Firstly 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.

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!

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.

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.

Wednesday, 24 June 2009

Transplant postponed

Having 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.

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.

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.

Effectively everything has been postponed 2-3 weeks as radiotherapy will need to be rescheduled amongst other things.

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.

Tuesday, 16 June 2009

Anthony Nolan Trust day

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).

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.

If you are in the neighbourhood, please feel free to come along!

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Monday, 15 June 2009

"You've got gallons of stem cells..."

Today (Monday) was first of the harvest days, I've had 4 days of the GCSF 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.

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.

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.

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.

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.

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.

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).

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.

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 hoo!

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.

Vincent was asking more about the procedure, stem cells and my treatment - I'll explain as best I can...
  • The treatment today was to collect peripheral stem cells for my own use, the GCSF 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.
  • 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)
  • 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
Hope this answers the question!

Thursday, 11 June 2009

Harvest Festival

Not 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.

In order to get these stem cells, I need to take a course of injections of something called Granulocyte-colony stimulating factor or GCSF. 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 GCSF 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.

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.

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.

Monday I'll be back at the John Radcliffe over at the National Blood Service 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. Unfortunately the line can't be used for extraction as it is too soft for that process.

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 have to finish at 14:30 as I then need to get over to the Churchill for my radiation test dose at 15:00.

I think Wednesday I will be largely in bed!

Dr. Bruce Banner...

Dr. Bruce Banner was the Incredible Hulk 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 The Incredible Hulk TV series from the late 70s. The consultant told me I was showing my age but it made light of the situation at any rate.

Next Tuesday (16th) 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.

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.

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).

Although the procedure is painless, side-effects will be tiredness, sensitive skin (not as bad as sunburn but more like 'sunblush'), 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...)

Turning green and getting really tall and muscular when I'm angry isn't on the list of side effects.

Time flies when you're not in hospital

Well if you didn't know already, I was discharged from hospital last Saturday (6th) - hooray! - and can't believe how quickly the time has flown.

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!

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...

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.

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.

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 :-(

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...

Also today, my GCSF 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 very tiring)!

Thursday, 4 June 2009

Heart & Lungs...

As mentioned yesterday, there is some work to be completed pre-transplant and some of that happened today.

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.

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 Mitral Valve but certainly nothing out of the ordinary or causing concern to the medical team.

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.

Had a long chat with the Transplant Co-ordinator (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).

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!!

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.

Pretty tired after all of this and hooked up with IVs for the night that should take me through to 3am :-(

Oh well, the garden was nice!

Wednesday, 3 June 2009

What happened to May???

May for me simply fell off the calendar thanks to numerous hospital trips both planned and unplanned totally knocking me out.

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.

I’ve 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.


Coinciding 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 ECG tests, lung tests etc. to ensure I’m physically fit enough for the procedure.

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.

Other joys coming up will be a test radiation dose ahead the transplant procedure.


You 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…
• 4th-11th May
• 20th-26th May
• And now, 31st May – still here, trying to get my temperature stabilised…

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!

Phase 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.

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.

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.

I don’t get away that easily though, it’s likely they’ll give me the intra-thecals during the transplant window.

Monday, 27 April 2009

Phase 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.

Treatment is notionally straightforward:
  • Cyclophosphamide - 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...
  • Cytosine arabinoside - intravenous, each day whilst at the hospital. On me seems to be causing a low-level nausea that anti-emetics like Ondansetron look to be controlling
  • Mercaptopurine - tablets I take every night, seem to be OK on these
  • Intra-thecal - every Wednesday :-(
Plus of course continuing with the tablets I was on before.

As mentioned, the Cyclophosphamide (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).

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.

Anyways - felt a bit better yesterday (Sunday) and today but not 100%. Hoping that this week is easier.

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!

As it all starts again tomorrow - I may not be online too much until the weekend again.

Okay - so where've you been???

Well, I wish I could say I've been living the high life on a sunny beach eating Sausage & Egg McMuffins but alas no.

Looking back on the blog I've realised that quite a lot looks to be missing from my final week before Phase 2, so in a nutshell - the transfusion went well (3 bags to increase haemoglobin counts), I stopped being neutropenic so was able to go out to Pizza Express for lunch with Sarah (which was wonderful) on the Thursday afterwards and spent the weekend helping out around the home, cooking etc.

I did have to take it easy though as I noticed my feet swelling up something awful and the hospital instructed me to literally put my feet up - the cause for the fluid retention still isn't known for sure but it could be a side effect of the Imatinib I'm taking.

Need to take a break now to help Sarah with some household computing/accounts but will blog later the joy of Phase 2 so far :-(

Thursday, 16 April 2009

A stitch in time...

God moves in mysterious ways...

Something I didn't mention in my update about Monday was that when they told me my blood count levels, I questioned how the haemoglobin could have gone down so much when the other numbers seemed stable. The doctor agreed and checked the system and suggested a re-check, requiring more blood to be taken.

At this point I had been transferred to the Medical Assessment ward.

She was not familiar with drawing blood from my Hickman line and I refused to let her draw blood using a needle (you know I hate them, I was tired and annoyed from all the waiting and frankly didn't see why I had to go through that when the central line was there for that very purpose).

Anyway, Sarah mentioned to the doctor that someone from A&E (where we were initially admitted) may be able to do it as they had done the initial blood drawing. The doctor must have misheard because we had a nurse from Ward 5E (the cancer ward where I was an in-patient previously) come down and do the procedure in a matter of minutes.

Where am I going with this??? We took the opportunity to ask the nurse to check the line as where the tube comes out of my chest was still a bit red and was causing some slight discomfort - she had a look and noticed/hypothesised that a stitch was actually still there...

Any hoo - when I had the transfusion yesterday we asked the nurse they to double check - lo & behold there were some stitch remnants still there.

So double good news from the Monday night debacle:
  1. A top-up has given me more energy for a great day today, hopefully for the boys return tomorrow and for Phase 2 next week
  2. My Hickman line should heal properly now and if the stitch had stayed any longer there was a risk the skin would have covered it completely and made life difficult later
So as my Dad commented on my previous update, there seemed to be a reason for Monday night after all!

Tuesday, 14 April 2009

37.5 and rising...

Because of my neutropenic condition, when I was discharged from Ward 5E I was told to get in touch with them if my temperature hits 37.5 Celsius.

Whilst 37.5 is normal for most, my reduced immune system makes this a trigger point temperature whereby precautionary measures are taken to ensure I don't go critical through infection.

Anyway, yesterday (Easter Monday) I noticed my temperature rising to the highest it's been for a while - taking my temperature at regular intervals in the day is second nature to me now - and I hit 37.52 around 18:30.

Phoning Ward 5E, despite me feeling fine, after they consulted they rang back and wanted me to come in. No beds so they said I had to go to John Radcliffe A&E.

By the time Sarah & I had packed (fortunately the boys had gone to their grandparents earlier in the day which was planned anyway) and got to JR, it was about 21:20.

It was all a bit of a disaster and in the end we effectively discharged ourselves at 5am this (Tuesday) morning as temperature came back down of its own accord and everything else seemed in order.

However, it did yield that my blood count was low (haemoglobin) so I need to go in for a transfusion at the Churchill tomorrow (Wednesday) - it will likely take the better part of the day.

So a bit frustrated as the Monday night thing was a stressful nightmare and my treatment free week now means a second trip to Oxford as well as missing a lot of today owing to catching up with sleep this morning - very lucky we didn't have to take care of the boys!!

Being positive about it though, the transfusion should make me feel a bit stronger for the remainder of the week and should stand me in better stead for Phase 2 Induction next week.

Well it's 23:57 (& 36.99 Celsius) & time for me to turn in before my eyes fall out of my head!

Thursday, 9 April 2009

Remission Accomplished...

Some great news ahead of the Easter break - yesterday I was over at The Churchill for bloods to be taken and also a bone marrow sample to check progress.

Blood numbers have been trending in the right direction for a while and a bit earlier today we got the call from the hospital indicating that under the microscope they cannot see the leukaemia cells and that I am in remission.

Naturally I'm not out of the woods yet, it will be a couple of weeks yet before we know whether the Philadelphia chromosome condition is under control.

Going forward, next week is a clear week but the week after that will be the start of Phase 2 Induction - quite intense as it's 4 days a week at the hospital for chemo, I'll blog more when I've looked into it!

In the meantime the quest for a bone marrow donor continues as does the investigation into other avenues now such as stem cells from umbilical cord blood.

Anyways that's a subject for another post, I'm still a little zoned out from yesterday's sedation & procedures but wishing you all a happy Easter!

Tuesday, 7 April 2009

12 minutes of fame...

Didn't quite make the Andy Warhol 15 minutes mark but certainly the past few days have seen quite a bit of media attention.

Firstly, I'd like to thank and acknowledge Catherine Osborn who has been absolutely brilliant in getting the bone marrow donor search story out there - the BBC, local paper and even the Mauritian Broadcasting Company amongst others have been contacted or have been in contact. Any and everything helps with trying to find that elusive match but even if I am not lucky hopefully the publicity has spurred more people to join their register which will prove life saving for someone else.

Catherine has been the main consistent driver throughout all of this but many many other people have been getting the word out too through their friend, family & work networks too and I am extraordinarily grateful for this too - thank-you as well!

So, last Thursday I had the Maidenhead Advertiser come round in the morning for some pictures for the paper (will be in the actual paper this Thursday I believe) and also to do an interview for the web. I look fab (not!) but the interview went well, allowed me to get some things off of my chest and was actually a bit emotional for me at the end with some quite incisive questions. Anyway, judge for yourself:
Yesterday, blimey feels longer than that, I did a live interview for BBC Radio Berkshire. For a while I was on the BBC Berkshire website front-page but no more however the web piece that was done can still be found as well as a "listen again" of the interview:

That was the week that was

So before it's too far a distant memory, an update on last week...

Treatment was meant to be pretty light with just Monday, Wednesday & Friday Caspofungin drips (Asparaginase jabs Monday too) planned and in theory should have been just "in & out".

Monday though proved to be quite a long day - had the jabs and the drip but a side effect of the Asparaginase is it reduces the clotting factor in the blood hence I had to have an infusion of FFP which took time as it requires ordering, thawing and of course administration. Coupled with a later than planned start anyway - it wasn't until about 18:00 that I was settled back at home and pretty tired. The upside was I was able to spend quite a bit of time with my Dad before he flew out to Mauritius.

Wednesday was quick but unfortunately accelerated owing to the news whilst we were in the hospital that Luke gashed his head at nursery and that they were taking him to hospital. Fortunately I had nearly finished with the Caspofungin, so whilst Sarah and I were both shaken up by the news we were at least able to call around for help and actually head back almost immediately. Fortunately things had sorted out by the time we got back without him having to go to Wycombe hospital (the original plan) however St. Marks did insist he got checked out at Wexham Park.
Sarah dropped me off at home as things didn't seem as drastic with Luke, plus it would be a long wait and more significantly we both thought it would be better to avoid another hospital (infection risk). Luke came home later - OK all things considered and fortunately they were able to use a bunch of steristrips rather than stitches. The strips will come off this Wednesday, we've been keeping his head dry in the interim...

Friday was a quick day thank goodness but the steroid tapering was really having an impact on me by then and to be honest it's only today that I've felt like "working" - the good news on Friday was that I was given this current week as a "week off". Except Wednesday (tomorrow) where it is planned to take a bone marrow sample to see where I am.

So that's last week - not much to blog for this week as it's supposed to be a quiet one but likely to be significant if the bone marrow analysis is finished ahead of the Easter weekend...

Monday, 6 April 2009

Apologies for the lack of updates

Just wanted to blog a quick update about the lack of updates - steroid withdrawal (I'm assuming it is this that's causing it) is really knocking me out. I'm not sleeping well at night and find it difficult to sleep during the day, consequently I'm pretty tired and feel spaced out a lot.

As well I'm feeling quite sick - either bloated sick, hungry sick, tired sick or some combination...

Have been feeling a bit low (physically) then and not really up to social networking duties! Plus to be honest when I have had sessions of feeling bright & with it, I've elected to spend time with family and/or sit outside to enjoy the time I have to myself.

Will definitely start catching up soon though - hope you understand!

Tuesday, 31 March 2009

Steroid withdrawal

I think I may have mentioned in a previous blog that last Friday was my last full dose of steroid treatment (105mg per day for the Ops types...).

Rather than go cold turkey on it, I am now on a week of "tapering" - 60/40/30/20/10/5mg doses that will end this Sunday (the 5mg dose).

It's playing merry havoc with my system at the moment, principally in the sleep department it would seem, the effects whilst on steroids were:
  • Increased appetite
  • Keeps you awake
  • Muscle loss(!) from biceps and quads
Now that I'm coming off of them I would expect things to change but still seem to have the appetite - talking with another Consultant yesterday, he mentioned that the fatigue I particularly felt yesterday could well have been due to the change in steroid regime.

Tomorrow I'm down to the 30mg level for a couple of days so we'll see how things go.

Sunday, 29 March 2009

Treatment Progress - Day 30

So pretty much a month in - unbelievable.

This last week I would say on the whole seems to have been a good one and certainly I'm feeling brighter than last weekend (which was the last of the first round of IV chemos).

On Wednesday was the "standard" Caspofungin drip, the lovely Asparaginase injections but also the intrathecal (lumbar puncture) - although the leukaemia shouldn't make it to the Central Nervous System, chemo is applied there anyway just to make sure.

Whilst an in-patient on the ward at John Radcliffe I had one done and was given sedative that totally relaxed me, however the Day Treatment Unit isn't set up for the same procedure and I was given an "happy pill" that didn't work.

Consequently the process was pretty uncomfortable to be honest and stressful - especially as it still wasn't happening after the first two attempts.

But like they say, 3rd times a charm and I consented for them to carry on (pointless not to after all of that) and success, the problem seemed to be a particularly tough tendon in my lower back that required more force than originally planned to get the needle in.

Anyway - 'tis done until the next time for which I shall run head-first into a wall to knock myself out if needed!

Sarah, as always, was my rock and salvation and helped me focus & breathe through it which is about as much as you can do I think to try and "relax" through the procedure.

Fortunately no side effects from any of this other than a sore back of course, Thursday quiet therefore just recovering and getting rest.

Friday was meant to be a quick day (and was to be fair despite some delay at the beginning) being just Caspofungin & Asparaginase. It has been 3 weeks though since the Hickman Line went in which meant that the last stitches could come out and that was duly done - I'm now waterproof again apparently!

As well, Friday was the last day of high dose steroids and as of yesterday I've started a reduced dosage to taper me off of them by next weekend.

With the last Asparaginase jabs tomorrow, I will also be able to stop taking the Allopurinol too so things are starting to lighten up a little and I hope to get some strength and energy back.

So where am I? Well, basically I'm at the point where they want to see the blood counts come back up and the numbers to indicate that I'm ready for Phase 2 Induction (section 8.5 of the UKALL XII protocol); it says that Phase 2 should start irrespective but I believe the current thinking is dependent on white cell count.

Thursday, 26 March 2009

Sausage & Egg McMuffin

OK - this is getting an obsession but hopefully it will ease pretty soon...

Part of my treatment is to take a pretty substantial amount of steroids everyday, many side-effects (my thighs and biceps have really shrunk) but biggest thing is HUNGER!!!

You may have noticed a couple of references to McDonalds in previous posts, I wouldn't say I'm obsessed but I do like it once in a while but one of the biggest things that has driven me to distraction is that on hospital days we get up early, I have enough breakfast to take some of my meds - the stronger stuff I wait until I get to the hospital as there is usually a wait from us arriving to the Day Treatment Unit opening - but every time to the hospital we drive past a McDonalds on the London Road:

View Larger Map

just as I get ready for "second breakfast" (yes, I know this officially makes me some kind of Hobbit) and because of how my taste buds are (again from the tablets), a massive urge for a Sausage & Egg McMuffin takes over.

Unfortunately, it's not allowed as I'm supposed to be off fast-food and takeaways because of the neutropenia - there is an excellent document that people should be aware of as to how to protect themselves, whilst at the hospital I was surprised seeing people eating salads which although are obviously healthy for a normal person, contain bacterial risk for those with no/low immune system.

Anyways - at the hospital there is a canteen where I can get something that helps stave off until lunch time and allows me to take the rest of the medication.

Tomorrow (Friday) is my last day of full blow steroids, after that I will be tapered off of them to allow my body to adjust to the withdrawal - it will be interesting to see how that affects things.

Tuesday, 24 March 2009

A "cancer free weekend"

So following on from the General Progress update, I'd get it off of my chest the more personal side to this last weekend.

Firstly, I want to make it clear that I am extraordinarily grateful to everyone for their love and support - I do not take it for granted and indeed draw on it as my reserve for when things are low; I just don't want the following to be taken out of context or misconstrued.

With the physical effects of the chemo (nausea, fatigue) came a general depression and a whole feeling of being thoroughly fed up with this whole thing - stuck in the house and mainly the bedroom, not being able to help out, missing the lovely weather & going out as a family, not popping into a cafe or McDonalds for a little treat, even washing the car, DIY or grocery shopping.

Also, for 4 weeks now, so much focus has been on me and people asking how I'm doing it all got too much and it just made me want to scream!

Like I say, I don't want to sound selfish/ungrateful but ordinarily being quite a private person I just felt so overwhelmed and wanted to get away from it all to the point where I just didn't want to talk about it to anyone and tried to deflect questions back to the other person as to how they were doing and what's new in their life.

I wouldn't call it denial of the situation but I think it was just my general coping strategy to try and take more control and be "normal" again.

The other thing I tried to do was set myself some little goals to aim for - as Sunday was Mothering Sunday in the UK, I made an effort to get up early with the boys and bring Sarah breakfast in bed and the cards/presents they had made. It gave me a great deal of satisfaction to do that one small gesture but again helped make things feel normal.

It seemed to work for me as well as talking about how I was feeling to my Dad and to Sarah, the worse part was trying to explain to the boys why I was feeling the way I was but they are resilient and seemed happy to go off and play and be boys that it wasn't so bad (I hope).

Anyways, that's that off of my chest - physically I feel better today, yesterday I learned that what I experienced was to be expected and so feel brighter again.

Bottom line I guess is that we all have a dark moments of doubt, depression, despair - everyone is different but for me figuring a coping strategy as quick as possible, sticking to it and being open & honest with those that you love and trust to share your feelings and concerns seemed to work for me.

Of course, knowing so many people are rooting for you and doing what they can too is always in the back of my mind and helps enormously - thank-you!

Treatment Progress - end of Phase 1

Ugggh, awful set of days since Friday and to be honest I've only really just got myself round to being able to write about it.

Friday (20th) was the 4th and last of my Phase 1 induction IV chemo, more chemo is to come but that's for a little later. It also happened to be the last day of the outpatient ward being open at the John Radcliffe ahead of moving to the brand new building/ward at the Churchill (still in Oxford, only about 2 miles away but it is a little easier for us to get to as we now miss the major roadworks).

Because of the move, the ward was shut except for one bed as it was a marshaling area for crates & equipment and myself and the other 2 people booked in for the day had our chemo in a little office - very cosy :-)

It was over pretty quickly and we were home early but right from being home, I started to feel really low very quickly - mainly in the form of extreme fatigue and nausea. To cut a long story short, although the anti-nausea medication helped stave it off physically, it was a rubbish weekend of feeling very low and depressed.

On the "plus" side - I had an opportunity to talk about this with one of the wonderful nurses yesterday about the weekend and I feel somewhat "normal" in that what I described matches a lot of other people's experiences.

Today, physically I feel OK but just really, really tired - I probably ought to sleep more during the day but I don't want to be waking people up in the night by altering my sleep pattern too much; plus when I wake up I'm usually hungry so that's a pain finding something easy and quick to stave off until breakfast!

This week is a relatively easy week I think for treatment - "just" Asparaginase jabs & Caspofungin IV (Mon/Wed/Fri) but tomorrow (Wed) I will also have an Intra-Thecal (spine) jab - I will be taking the sedative option to try and knock me out!

I'm still in the Induction Phase but between Phase 1 & Phase 2 - start of Phase 2 will be determined from my blood counts reaching a certain level again before more blasts of IV chemo, hopefully I will be getting some strength up at the same time as hospital visits will increase to 4 times a week for 3 weeks :-(

Main risks at the moment - the neutropenia, so keeping myself to myself as much as possible to avoid infection risks...

On the peripheral neuropathy front - tips of toes are starting to be affected I think but it's not something I'm usually focused on so difficult to tell. Fingers though are a nightmare, dull numbness about half-way up each finger and thumb - doesn't stop me from doing things but it's just a generally unpleasant sensation and makes delicate tasks a little fiddly.

Finally for this post - hair. I think after a long battle to hold on to it, it's starting to go. Not sure if it's all coming out or just thinning. Jake is excited about the prospect of me going bald, I'm not sure I share his enthusiasm but will post a picture if I do as I'm kinda curious myself now!

Thursday, 19 March 2009

Neuropathy & Neutropenia

There are some classic and/or well known side-effects of chemotherapy such as nausea (for which there are several excellent medications to help control this e.g. I'm taking Cyclizine & Ondansetron) and hair-loss (alopecia). So far my hair hasn't started coming out yet although I've had it shaved pretty close to make it less of a thing if/when it does (both for me and Sarah & the boys).

Two things I'm experiencing that are possibly not so well known are Neuropathy and Neutropenia.
  • Neuropathy - specifically Peripheral Neuropathy. Basically as a result of the chemo, there is a constant numbness/dull "pins and needles" in my thumb and fingertips.
    It's really more of an annoyance than anything else but I do need to watch that it doesn't extend further into the hand. From a practical perspective, obviously I'm still able to type but using my phone is getting a little harder because the buttons are obviously smaller, especially on the slide out keyboard.
  • Neutropenia. This one is harder as basically it means my immune defences are really low. I have to be careful what I eat (I'll blog something about that some point soon as it is very important and could be useful to others) and avoid crowded places (like hospitals I guess!) as catching and dying from infection is a genuine risk.
    This of course limits the number of people I can see currently, going out, having a curry or McDonalds(!)
    My last blood count puts me severely neutropenic but the medication I'm on is looking to stave of viral, bacterial and fungal infection and coupled with taking regular temperature checks to make sure all seems normal.
Tech Alert - OK the "gadget-boy" in me cannot control itself anymore. I really like my phone, it's an HTC S710, Windows Mobile device. I've been a huge fan of Windows Mobile right from the days when it was known as Windows CE (unfortunately shortened to WinCE).

Back in what must have been around very late 90's, I was very lucky to win a HP Jornada 540 in a competition and very quickly got introduced to a device that carried my photos, music, Outlook, e-books and notepad in a very compact and actually quite reliable form. It's interesting to see how other companies are only now at last catching up with what Microsoft was able to commercialise way back then. It would be remiss of me though not to mention the Apple Newton at this point which more than likely got the Redmond brigade on the right road.

The phone was from BT - I didn't like their customisation of Windows Mobile so burned in an upgrade that has proved ultra reliable and stable but more importantly allows me to keep in touch through SMS & mobile internet when at the hospital.

You've got a what in your chest?!?!

A tube - or more accurately a Hickman Line...

Most people probably know that I am awful with things medical (injections, having blood taken etc.) - not just having the procedures done but people talking about on themselves or sometimes in general as I have a completely irrational thing of imagining it happening to me as they speak, I know weird.

If you are a bit prone to this yourself, you may want to skip this posting.

True story - the height of my infamy on this front was probably when Alien 3 opened back in 1992. There is a scene where an autopsy is carried out on a little girl, you don't see anything but you see the prep, the tools and you hear it when the chest is being cracked open. First time I saw it no problem as I didn't know it was coming, however I ended up seeing it again with my housemates at the time and seriously, I quietly passed out in the cinema - what a nightmare!!!

So, with the amount of blood that needs to be taken to check levels, chemo going in etc. this whole thing is a bit of a nightmare and this is where the Hickman Line comes into it. Essentially it's a main line to the heart, the picture gives an idea as to how...

The procedure takes a while and a specialist team of nurses (certainly at the John Radcliffe, not sure for other hospitals) performs it in the ward.

Some people have it done with just with local anaesthetic but I know that would be beyond me to as there was an option to be sedated that 's what I did and so slept through the most of it but was awake for the final bit.

Being absolutely honest - I am still a bit freaked out about it even after a couple of weeks now and I try not to look at it, however the benefits are immense as blood is taken and drugs administered without you feeling a thing saves your arm veins getting shot to pieces.

So, I'll stop at this point as I was hoping that writing about it would make me come to terms with it a bit more but unfortunately not that much :-(

If any one has ideas as to how to get over this nonsense - leave a comment!

Wednesday, 18 March 2009

Told you I wasn't feeling well...

I was listening to the radio the other day and it dawned on me that I haven't really indicated the symptoms that lead to the diagnosis.

Given the amount of exercise I do, I would say that I'm reasonably fit and fundamentally know when something "isn't quite right" - the non-disappearance of what I thought were muscular pains after a strenuous gym session prompted the sessions to the doctor but looking back on this all:
  • Deep "muscular" pain (it was actually pain in the bones because of the blast cells)
  • Nose bleeds that didn't stop quickly (because platelet count is affected by the blast cells)
  • Weight loss that people were commenting on (and I thought it was because of more activity and better diet :-( )
  • General tiredness/fatigue (haemoglobin levels dropping meaning less oxygen being carried around)
This came on very quickly, I was told that had I have had a blood test in November 2008, everything would likely have checked out fine.

Bottom line - don't be a hypochondriac but do listen to your body, if multple things start occurring get a proper check out to include a Full Blood Count.

Phase 1 Day 20

So from the "Ph pos" flow chart in the UKALL XII posting, today is Day 20 of Induction Phase 1 and I've been over at the John Radcliffe as an out-patient last Monday & today.

We're leaving early for the hospital to beat motorway & Oxford traffic (there are major roadworks near the hospital) plus getting to the hospital car parks early because they fill up so quickly. Journey time isn't bad actually and probably comparable going to Wexham all things considered!

Monday was a "short" day as it was just taking blood for the blood counts, a reaction test to the new medication being introduced (Asparaginase) and, as there was no hypersensitivity detected, the Asparaginase shots themselves which is a delightfully stinging injection in each buttock...

Moving swiftly on to Tuesday - quiet day at home. Actually felt pretty good and broke out of the confines of the bedroom to be able to have lunch and tea downstairs - it's not all peace and quiet at home though, major building is underway for the new Holyport Manor School, below a picture from our bedroom window...

Today though was a longer as in preparation for the IV treatment on Friday, 3 units of haemoglobin plus the Caspofungin & Asparaginase. All went well though and hopefully Friday will be relatively quick - it needs to be as they start packing up that day ready for the weekend move to the new specialist cancer unit at the Churchill Hospital, more on that when I go for spikes in the bottom on Monday...

Tuesday, 17 March 2009

The Anthony Nolan Trust

For those who don't know about it, The Anthony Nolan Trust was founded back in the 1970's and through the pioneering and visionary drive of the founder, now operates one of the largest register of donors in the world and through connectivity with other national registers now offers access to over 11 million donors worldwide.

Getting down to brass tacks, Bone Marrow Transplant is the only viable option for long(er) term survival, so I've been doing a little research myself tonight and working with some fantastic friends to try and drum up support for getting a slighltly better chance on tissue typing.

If you are interested in joining The Anthony Nolan Trust Register, more details can be found here.

Monday, 16 March 2009


Protocol 12 (XII in Roman numerals) is the current treatment regime in the UK for Acute Lymphoblastic Leukaemia (ALL), hence UKALL XII.

There are variations in UKALL XII protocol depending on being Philadelphia positive or negative, a lot of information is available at the Oxford University Clinical Trial Service Unit. Specifics around UKALL XII protocol can be found below:
NB: I am not a medical professional, these are links I found when informed that the treatment regime was probably available on the web as hard copies were not to hand at the hospital. As with anything, these documents may get obsoleted and should be treated for informational purposes only - speak to a professional if you want the latest!

Taking the news...

I'm not a deeply religious person (I'm a lapsed Catholic I guess) so I'm not intending this particular post to be profound or anything like that - in fact those who know me will probably see this as part of my general pragmatism! Here goes...

To be honest, I knew something wasn't right when I was asked to go to Wexham Park - having to go to hospital for a follow-up on the blood test made me suspect something was coming and when I arrived at the Eden Day Unit, I knew something BIG was coming owing to the number of posters around the place indicating support groups for things like Lymphoma.

Mentally/sub-consciously then I think I was gearing myself up for significant news and so when the diagnosis was confirmed I actually felt huge relief that the ailment was at last identified as it completely explained all of my symptoms and made me feel "normal" in that the weird nose-bleeds, feeling tired and achy were not necessarily down to stress, over-exercise or me being an idiot but there was actually something really wrong!

In all honesty I didn't find the news difficult to take - partly because of the above, partly because the medical staff were extremely professional and didn't beat around the bush in presenting the news and partially, I feel, owing to my "let's get on with it" nature; as far as I'm concerned, we know what the problem is so how do we go about fixing it?

At the same time though I'm not pretending that I was unemotional about it, being faced with your own mortality brings things into acute perspective and there were tears especially when I saw how the news was affecting my wife who was able to come back from work by that time - it is easy to forget how the news impacts others in a situation like this.

My main breakdown though was the thought that this was something I was going to pass on to my children - the thought of me tainting their lives preyed heavy on my mind and it was an enormous emotional relief when I was told that this is not hereditary (in either direction) - that helped me open up, from that point on it was "right, what's next?"

So all in all, in a very strange way, this seemingly total random event has actually been good for me; strangely I feel happy again - it has slowed me down and brought me closer to family, friends and even my faith. It has helped me realise what's really important in life - little things like making and hearing your children laugh and having the genuine love & support from amazing friends and family.

I feel blessed therefore that this will ultimately be a genuine life-changing event.

There are numerous examples/models of dealing with change management (as people I've had the fortune and pleasure to be their manager or mentor/coach well know!), but one I've just found seems to be the root research the The K├╝bler-Ross grief cycle

I think throughout my life/career I've been very fortunate to move on to the acceptance phase pretty quickly, maybe I'm daft in not spending more time on the other phases but as far as I'm concerned, things are what they are and you have to make best of the situation - I'm sure others have differing opinions, please feel free to comment!

Everyone is different though and people will of course react differently. However from my perspective though, I just want people (especially immediate family) to know that I have never felt angry about this or that someone or something was to blame - my philosophy is that energy is far better spent on looking to the positives and focusing on how to move things forward.

I believe Positive Mental Attitude is key and I want to thank friends, family & professionals for the awesome support being shown to help maintain this.

Sunday, 15 March 2009

Two and a half weeks in...

So blogging has been slower than expected (sorry) - mainly down to fatigue and actually finding the time between sleeping(!) and hospital.

First intravenous chemo was in hospital 28th Feb and I've had 2 more since (6th & 13th March), I'm also on oral chemo to handle the complication of the Philadelphia chromosome too.

Left the John Radcliffe as an an in-patient on the 7th March and was over at Wexham Park on Mon 9th & Wed 11th for treatment (Caspofungin) and was in Oxford again (as an out-patient) Friday 13th for IV chemo (Vincristine & Daunorubicin).

Had to go back Saturday 14th for haemoglobin transfusion (3 units) which literally took all day. I was over at the new West Wing ward (still at the John Radcliffe) for this - amazing how modern the new ward is it's actually part of Neurosciences but haematology have some beds there.

Recovering today ahead of Oxford next week (Monday, Wednesday & Friday) to supplement on some new treatment - this is all part of the UKALL XII protocol which I'll look to blog later.

Wednesday, 11 March 2009

Hello world!!!

First time blogging, so forgive stylistic errors and the such.

Thought a while about this and in the end decided "why not?" - it's clearly a very personal thing but at the same time I figure it will be cathartic for me to capture mad ramblings but also may provide useful information for others as I intend to capture useful links (somehow, probably a "Resources" label) to share and as I intend to get over this, it could be useful/interesting to read back on.

So, my name's Chris - coming up to my 38th birthday and until 3 weeks ago in pretty reasonable physical fitness, non-smoker, very light drinker and eating as healthily as you can as an office worker when all of a sudden an ailment strikes that eventually (but very quickly) gets diagnosed as Acute Lymphoblastic Leukaemia (ALL - and you can probably tell by now from my spelling that I'm British ;-) )

Starting this blog and looking back on events to date, it's all been a bit of a whirlwind.

What started off with what I thought was muscular pain from over exertion at the gym but when initial pain killers didn't work and the pain was getting worse I had to take myself off to the local A&E one weekend for some help, that was 14th Feb.

The doctor there gave me something else and a diagnostic based on the best of his ability and the equipment to hand but the key thing he said was to follow up with GP on 17th who critically scheduled blood tests for the 24th Feb.

Reflecting at this point, I guess diagnosis had been pretty slow (considering the seriousness of the underlying ailment - but hey, who suspects leukaemia in an otherwise healthy bloke as an initial diagnosis?!) but from that point on I have been stunned and awed by the efficiency of our beloved NHS.

Something must have "red-flagged" me in the system as I heard the next morning that I had to get over to the local major hospital (Wexham Park in Slough) - I am eternally grateful to the unknown skilled analyst behind the scenes who spotted the problem and obviously made the appropriate notifications.

More tests were conducted there in the afternoon, sent over to Oxford (John Radcliffe) and by about 19:00 that same day (25th) my condition was confirmed and presented.

Thursday we started organising ourselves and Friday 27th February I was admitted to John Radcliffe!

I've since been discharged as an in-patient and am on sick-leave at home but treatment is intensive and frequent hospital visits are required, this is the start of a long journey...