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…

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.

THANK-YOU ALL!

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.

Chris.

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.

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!

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 :-)

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...

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
• Saturday/Sunday - WARD 5E AT THE JR CLOSES AND TRANSFERS TO THE CHURCHILL
• 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...