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It’s 3.00 am Fri morning, I’m awake and feel like shit; I’ve just had a small anti-nausea tablet, which with a little water has managed to get by the tumour and feeding tube, so there’s definitely some shrinkage of tumour going on to in order to have an increase in clearance in the Oesophagus – this a very good thing.

Apart from the nausea; I’ve also got gurgling & bubbling in the stomach, flatulence, burping and hiccups; so there’s a lot going on down there.

On Nutrition
I basically had no food all last week due to fasting for morning procedures 3 days in a row which didn’t actually happen to mid/late afternoon. Late Wed last week I was finally give 2 x 80 ml lots of ‘nutrition’ via the nasal feeding tube, and this did not go well.

During the night I ended up with severe cramps (from full stretch to near foetal like position), and many bouts of diarrhoea – despite informing the dietician that I have been vegetarian for the 19 years (the past 16 as vegan – a personal choice I don’t carry on about) – I found in the morning that this food contained both Sodium Casseinate (milk protein) and Taurine (found in meat) – both of which my body had picked up on and reacted the same as if I had some food poisoning. The milk protein of course stimulated higher than normal levels of mucous, which in turn flared up my sinuses for a couple of days – non of this was fun.

Late Friday the ‘Fibresource’ (suitable for vegans) finally arrived. Although I only had a bit over 200 ml @ 100% before I asked the nurse to turn it off about 10.00pm, this produced a similar reaction with me losing around 2 litre of fluids through diarrhoea over the course of the night and Saturday morning – a counter productive effort. This reaction is called re-feeding syndrome (or something) and is common with those who have gone without food for extended periods of time.

On Monday we tried again, but went for a 50/50 mix with water, which reintroduced ‘nutrition’ in a softer way which I seem to have tolerated much better (my idea). The dietician was insisting I go back on 100%, but yesterday we settled for 75/25 mix with feeding off between 10.00pm and 6.00am which is where I’m at and seem to be tolerating ok with no adverse reactions. The Fibresource nutrition ingredients list reads like a chemical cocktail, goes in looking like coffee chill but comes out like Vegemite – ‘it isn’t food’ in the proper sense!

Anyhow, as I’ve I only just started the chemo late this Wednesday, last night I asked one of the nurses about what actually goes on physically with the tumour as it ’shrinks’. The chemo is killing it, and as it dies it just decays and gradually breaks away (but not in large chunks), and being in the Oesophagus naturally ends up in the stomach to be dissolved.

Now that I’ve been awake for a while, I’ve been wondering how my body reacts to this, because despite being made up of tissue and blood from my own body, it’s still intrinsically meat. Without using Pi to work out it’s approximate volume, the mass is somewhere around 4 – 5 cm in diameter, and about the same in length, so I’d say there’s at least 50 cubic cm + of ‘meat’ slowly being added to my stomach contents which is the point of the chemotherapy – but I’m wondering just how my body reacts to this ‘meat’ in the digestive system.

Myself and other vegetarians I know, who have been inadvertently been fed small quantities of meat occasionally over the years, have experienced food poisoning like reactions at the time, or the day after the event (nausea, vomiting, diarrhoea etc to varying degrees), apart from the chemo, this meat may be contributing to the gurgling, bubbling, flatulence, burping and hiccups.

There’s not much I can do about this ‘meat’ in the stomach, it’s just the way the chemo works, but it has made me wonder just how the body deals with it given my long term dietary choice … just some thoughts running through my head in the wee hours …

Johnno

For all that are interested;
I’ve had an hour of IV hydration, some more anti inflammatory and anti nausea drugs.

I’m on 50/50 Fibresource/water nasal feed till 2.00am, they’ll then go 100% Fibresource till 10.00am – the stuff is shit and has given me stomach cramps and diarrhoea before any treatments!

I’m halfway through the first hour of chemo CISplatin 60mg, then I’ll get another hour of IV Hydration and something else; then I’ll be on 24 hour doses of Flouruoracil 1400mg for 5 days straight, then I’ll have a couple of weeks off and can probably go home.

Any further chemo may then be home based if the shrinkage will allow the feeding tube to be removed, and that will mean I can get full into other more natural/alternative cancer treatments, ones that work with the body and its immune system, rather than against it.

Radiation is due to start on 16 June, and that will be daily 2 minute sessions as an out patient.

I feel a long night ahead …
Johnno

Update 11.00pm Perth time

from my notes …

Both the chemo treatments are refrigerated.

The first CISPlatin was a fast rate delivery over an hour, main side effect I experienced was being cold, despite climate controlled room and 2 blankets.

The second Flourouracil is a slow delivery over 24 hours (x 5 days), main side effects I experienced over the past few hours in order;

• sudden itchy beard and scalp (5 – 10 minutes)
• queezy stomach (ongoing)
• dull ache in groin (about 15 minutes)
• dull ache across chest – not sure if it is in lungs ,rib cage – more to left than right (might be oesophagus and/tumour). pump stopped for ECG test, Doctor reviewed results, all ok, restarted pump (continuing)
• feel very lethargic, dozy but not sleepy (continuing)
• just had a Troponin blood test to double check if there had been a heart incident, nurse hasn’t returned yet with result – have to wait for pathology – will post when known

This morning the doctor saw me early and he has come around to my way of thinking a bit on a few things, and also depending on chemo schedules, I have permanent ‘day pass’. I spent 6 hours at home on Sunday with family, and it did my soul/spirit the world of good; knowing that is available over the coming weeks really made my morning. Apparently I’ll be heading to Oncology some time today, get a PICC inserted and commence the treatments tomorrow.

I certainly never expected to post on this subject, but I’m posting this simply as a warning to others to not dismiss indigestion as just a bit of gas resulting from eating too much, or too spicy. If you have indigestion for more than a couple of days, get to a doctor and get tests done, it may just save your life.

My story probably goes back about about 18 months ago when I felt something wasn’t right in the stomach region. I had a little indigestion, but nothing major, anyhow I had blood tests etc, but nothing was shown, and it seemed to clear. However I continued with ongoing blood tests and had a Colonoscopy Oct ‘09 which found a 3mm sessile polyp which was removed on the spot and everything else was fine; it’s a pity they didn’t do an Endoscope at the same time, cause they might have found this shit earlier.

Anyhow a bit over 2 months ago I started getting some bad indigestion again, so off to the doctor, more blood tests. while waiting for results he put me on Nexium 40 which was supposed to reduce bile production, but a week and a half later I was still suffering and taking a pack of Quikeze each day as well as Nexium. The blood test came in and showed the presence of H. Pylori bacteria, but to see if it was active or not, an Endoscope was required. Unfortunately I had to go on the public waiting list; 6 weeks have passed and there’s still 3 to 4 months to go … but we’ve bypassed that now.

I went to my Naturopath, and without telling him anything, took one look in my eyes said ‘bacteria’ and preceded to open a book on the gastric section; I said H. Pylori, he nodded. So after a brief discussion he advised gluten free, sugar free, and yeast free for a month to allow the bacteria to go back to it’s proper levels. Within 3 days my stomach settled and it was then I became aware that the indigestion had been masking something else.

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Friday WA time was when I was able to download the latest Ubuntu 10.04 LTS (Lucid Lynx), I then decided to perform an upgrade of my existing 9.10 (Karmic Koala) rather than a clean install – that was a big mistake.

Apart from taking over 3 hours to perform, once it was complete I found that my desktop effects wouldn’t work – Lucid had broken the ATI/fglrx graphics drivers, and it wasn’t possible to uninstall all components in order to re-install and fix the problem (major bug there). And on Ubuntu’s forums I wasn’t the only one having that problem. After a day of stuffing around, I had it fixed … sort of.

But it wasn’t good enough, so I bought a new WD 500 GB ‘black’ hard drive, replaced the 640 GB (Ubuntu 8.04 LTS) drive, and performed a clean install of 10.04 which it only took about half an hour – next was installing my usual applications and then migrating my data across to the new OS. Once done everything worked as it should, the new desktop ‘dark’ scheme looks great, and does it boot fast – from POST to a ready desktop in just 35 seconds, damn that is fast!

My new desktop 2560 x 1024 (spanning 2 x 19″ monitors @ 1280 x 1024 each)

more later …

Some may have heard of this, but I suspect many wouldn’t have, and I didn’t know about it until I found that I could login to my YouTube account with my Google ID.

Put simply, you register for an Open ID account , and then you can access sites like Google, Yahoo, MySpace, Facebook, Flickr, Live and many more with just the one username and password – much easier than having separate account access at each site.

You can get an Open ID from any provider listed here http://openid.net/get-an-openid , and with a central Open ID profile you can also link all your sites, as well as search friends/contacts from all your Social Networking sites and much more *.

As for security, I don’t think all the ‘big guns’ of the Internet would use it unless they knew it was a secure service; in fact many of them are sponsors of the Open ID Foundation, as well as having representatives on the Board of Directors; so it seems relatively secure in maintaining some of your personal information.

* the above is purely my summation of the Open ID service, please check with individual Open ID providers for exact usage,  features and benefits available.

Well, I’ve had the N97 a couple of weeks now, and I’m reasonably impressed with it. Getting use to a ‘Touch Screen’ phone/PC is a bit of a pain, but not so much that I’d replace it with an ordinary ‘keypad’ type phone.

Battery life is good considering the applications it can run and the screen graphics it supports; not as good as my previous Nokia 6233 for Standby Time, but far better than the Samsung Ultra Touch. I’m getting about 3 days Standby with reasonable phone use; even when using the GPS drive function, it consumes very little battery capacity, and that impresses me.

Although the text size is relatively small (even on maximum setting), it’s very handy having a ‘micro PC’ in my pocket; I can hit the Web, check emails, lookup phone numbers, get directions, do banking, check eBay and social networks etc etc

I’m eagerly awaiting the new Ubuntu release 10.04; I can then upgrade my recently installed 9.10 ‘Karmic Koala’ to an LTS* version which should see me through the next couple of years. I certainly like the new ‘darker’ theme that comes with it, far more appealing than the current & previous ‘brown’ theme.

But from all reports the following version 10.10 ‘Maverick Meerkat’ is going to be a ‘Windows’ breaker, and will be using the new Gnome 3 desktop environment which unfortunately wasn’t available in time for inclusion in 10.04 ‘Lucid Lynx’ (which uses the latest version of Gnome 2); and if 10.10 ‘Maverick’ is as ground breaking as it is intended to be, then I may upgrade to that when it’s released in October this year … I’ll wait n see on that though.

*LTS = Long Term Support – these releases use more stable versions of  applications, and are released every 2 years (in April) with support for 3 years on Desktop PCs, and 5 years on Servers. Other versions are released every 6 months (in April & October) with 18 months support, but use more ‘bleeding edge’ applications etc -  see here for more info.

The 2010 Ulysses Club AGM ran from 8th to 14th March and was held in Albany, Western Australia – each year it is held in a different Australian town or city. As I’ve only been a member for a little over a year, and this AGM was being held in our ‘own backyard’ as such, it was a perfect opportunity to checkout what a Ulysses AGM was all about. It was my first AGM, as well as my brother’s, and we both thoroughly enjoyed it.

Ulysses AGM Site - Centennial Oval Albany

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Well after a further couple of weeks persevering with the Samsung after buying a new ‘aftermarket’ battery, I phoned 3 (Three – Vodafone Hutchison Australia) and informed them the 700 ma battery time was better than the factory 880ma battery, but only just and I still couldn’t get more than a day and a half from it on Standby, and only with minimal use.

In the intervening weeks since my last contact with 3, the new Nokia N97 mini had been released and 3 could let me have it ‘free’ on the $49/mth cap plan; all I had to do was send the Samsung back and all cancellation fees would be waived – ok, give me the N97 and I’ll see how things go from there.

The N97 is definitely a better phone in so many ways, but mainly in ‘Standby’ battery life; I’m getting 3 days + with average use. (continue reading…)