A blog to keep friends and others up to date with my chemotherapy for bowel cancer, along with anything else I think of :-) Newly updated to include bladder cancer
Thursday, 31 July 2008
Chemo dates
This is good news as we was a bit worried how I would get to and from the hospital - not actually the going to the hospital, but rather the getting home from the hospital after I have been pumped full of drugs.
St John's in Livingston is five minutes from home and if the worst comes to the worst I could get a taxi there and back (Helen was suggesting that I cycled, hmmmm).
One of the consultants at the Western has a clinic at St Johns every week, so this is the best of both worlds - same treatment as at the western, with full access to the specialist nursing team and oncologists, but five minutes from home.
The treatments will last for 8 cycles of 3 weeks each, back to back, giving a total of 24 weeks (23 actually). Each cycle starts with a day in hospital - a tuesday as it happens. This is followed by tablets for two weeks and then a week off, before starting again. So, eight 3 week cycles less the last week makes 23 weeks. That means, according to my calendar that the last treatment will be on 19th January, which is a bot earlier than I was expecting, so that is a bonus too.
that is enough from me now though so
bye
Monday, 28 July 2008
Google, whacking and cuilness
Google have just announced that they think the internet has 1 trillion unique URL's (Universal Resource locator) – that is 1,000,000,000,000 (1 million, million) web addresses. A URL is the bit that you type in the address bar in Internet Explorer like www.bbc.co.uk or www.microsoft.com.
So that is the number of 'websites' but how unique pages are there?
In 1998, in the first Google index there were 26,000,000 pages. By the year 2000 they were up to 1 billion pages. Today, the answer is that even Google don't know! And in fact the number of new pages every day runs into several billion, so even if they started counting new pages are appearing faster than they can reasonably be counted.
In theory the internet is infinite. If you take the example of a web calendar, then each 'day' page will have a link that leads to the next day and of course that would go on foreverJ. Pages like these are not meaningful to most people, so Google just ignores them.
Google has an Index of all (ok then, most) of the pages on the internet. They start from certain pages, each of which has loads of links to other pages. They have a 'spider', sometimes called a 'crawler' or a 'bot' that follows these links and when it finds unique content then it indexes it, reading the content and creating the search index of keywords that allows you to search for anything. Then it follows the links to all the pages linked from the newly indexed page and starts all over again. Eventually, after removing all the broken links and duplicate pages it has an index to everything – their stated goal is to "index all the world's data".
Google updates their index continually, updating information and re-processing the web-link graph several times every day. This graph consists of the 1 trillion URLs and Google likens this to exploring every junction of every road in the US – except 50,000 times bigger, and all this so that you can search for the latest gossip/pictures of Brad Pitt/Angelina Jolie/Big Brother housemates (take your pick).
So, now that we know the size if the internet, the next thing to do is to try to find a "Googlewhack" – a search for two words that returns a single result – i.e. the only page on the entire internet that contains your two chosen search objects. There is a website dedicated to these, along with the official rules and a page to allow you to post any Googlewhack you find (yes, I have found one and no, I can't remember what it was – it was about four years ago!). Of course, finding and posting a Googlewhack is self-defeating (as Google indexes the new page recording it as a Googlewhack).
The comedian Dave Gorman created a stage show that toured the UK, France, Australia, Canada and the US and has written a spin-off Sunday Times Best Selling book about googlewhacking and googlewhackers.
Finally, just when you thought it was safe (and/or impossible), a new search engine has popped up with the intention of knocking Google of their perch. Cuil claim to index 121,617,892,992 web pages and also that this is three times more than Google (who no longer tell how many pages they index). Their index method is (allegedly) better/stronger/faster than Google , their page is nicer and they are generally all-round nice guys, who will make you a cup of tea if you call in at their offices in California (ok I made that up about the tea). Have a look at www.cuil.com (from the Gaelic for knowledge or hazel and pronounced coolJ). As a comparison, if you search for "Googlewhack Adventure" (Dave Gorman's book title), Cuil returns 23,098 pages, while Google returns "about 26,600". I will leave you to decide which is better…..
Thursday, 24 July 2008
The Drugs Squad
We started off with the diagnosis of IBS, quickly moving on to this tumour, briefly visiting a twisted bowl along the way. Then we were told that it looked thike there was "lymph node involvement" - an odd turn of phrase, but one I ahve read in other places. Then there was the liver, which also seemed to look as it was infected.
This was the situation when I left hospital, about three weeks ago. Then, about two weeks ago the MDT meeting took place (see the last post for more details) and the news got better. Now while this was great - no liver problems and no lymph node involvement - the thing that stuck in the back of my mind, and Helen as well, was that if the diagnosis could change once, then it could change again....
So it was with a certain amount of trepidation that we turned up this morning at the Edinburgh Cancer Centre, part of the Western Infirmery. We got there in plenty of time, and sat in the waiting area. This was not too bad, although Helen did compare it to an old peoples home - certainly, we were the youngest there by a good twenty years.
After a while one of the nurses came and introduced himself to us and decided that I needed to be weighed. I have lost about a stone in the last month, but if pressed I would not recommend this as a weight loss plan.
After an hour and a half, getting more and more fidgety all the time, we were called though to see the registrar. She was very nice and almost imediatly put us as ease by confirming what he had been told earlier - after that I dont think we heard anything else!
It is not actually true about not listening, but it was a massive relief.
So, this is how it is. The medical staff are as confident that the cancer has been removed as they will ever say - they will never commit 100%, but as close as. Their recommendation is that I have chemo to wipe out any remaining rebels.
They want to do a full colonoscopy, but probably not until after the chemo - it is too soon just now, on account of being cut up the middle - and it is probably not a good idea to do it during the chemo. Having said that they are sure that there is nothing left. If there had been any more tumours or infection there would be some polyps, but there was no sign of anything.
We were given a bit more information aboout the drugs as well. The set of drugs I will have is given to most colon cancer patients up to the age of about eighty. It is (apparently) one of the mildest chemo diets, so I recon that if an eighty year old can survive this, then I as a fit(ish) forty-something should be able to cope. Maybe that is a bit optimistic - maybe it is just plain hopeful. I guess this is a journey that I am just starting - you are welcome to tag along via this blog.
Thanks you for all the comments to the first post - it is encouraging and humbling that so many prople are praying for myself and Helen. If you wouldn't mind praying that helen has peace about her new job that she starts in a few weeks - what with having to look after me all day, she needs a bit of TLC for herself.
I will post again when I have more to say (you may no think that is a good thing, but there you go)
god bless
Graham
(p.s. the title was inspired by Becky)
Tuesday, 22 July 2008
Beginnings
The reason behind this blog is to update friends and family (and anyone else interested) on my treatment for Colon Cancer.
Since this is the first post it will probably be longer than most of the others. Also, I should probably include a synopsis of how we got here, so here goes...
Early in 2008 I started suffering from stomach cramps and what I think I will call 'blockage' (I am trying to be polite here). After several visits to my GP and tests in hospital I was diagnosed with Irritable Bowl Syndrome or IBS.
Towards the end of June 2008 this suddenly got worse and I was rushed in to the Edinburgh Royal Infirmary. After several tests the surgeon told me I had a twisted bowel.
"OK", I thought, "that doesn't sound too bad", although it did involve keyhole surgery to sort it, but I should still be out in time to go on holiday.
During the surgery, the surgical team realised that it was not in fact a twisted bowl, got out the big knife and split me up the middle. They removed a tumour about the size of a satsuma, along with several inches of colon on either side and then proceeded to staple me back together.
This obviously knocked the holiday plans on the head and I have spent the time since recovering from the large and impressive scar up my stomach.
The day after the surgery, the consultant who performed the operation told me of his findings and sent me for a CT scan. The scan seemed to indicate some possible infection of the nearby lymph nodes - bad news.
After that I was sent home to recover (and kind of left hanging with this diagnosis).
After a week or so there was a (scheduled) Multi-disciplinary Team or MDT meeting of the medical staff (but not me!) with the surgeon, radiologist, oncologist and pathologist puting in their tuppance. During the meeting on further inspection of the pathology and scans they decided that the lymph nodes were not actually affected/infected - good news.
I have to say, at the time of this post this diagnosis is still second-hand from one of the specialist nurseing team and I have a consultation with the oncologist later this week - no doubt I will blog about that meeting later.
So much for the physical side of this.
I am a committed Christian and an active member of Kings Church Edinburgh. One of the first people we told - in fact we turned to him when I was admitted to the hospital in the first place - is the lead elder and our good friend, Matthew Clifton-Brown. He and the church have been an amazing strength for myself and family.
I want to thanks Errol and Raph, Errol for looking after us and Raph for organising the prayer and fasting rota.
This has been a roller coaster ride for both myself and Helen (my wife). I have gone from being sick (physically) to mainly relieved that it wasn't serious (twisted bowl) to very unhappy (tumour) to very, very unhappy (spreading) to overjoyed (not spreading) to slightly anxious (just about now, waiting for the consult on Thursday).
I will admit that I have had some dark thoughts at times. The first trip I made after escaping from hospital was to see some friends who had just had a baby (girl, if you are interested). I sat on their settee (exhausted) and watched my children cooing and cuddling this new life. Both of my older daughters (15 and 16) decided that they wanted one.
As I watched them I had the dreadful thought that I may not (indeed possibly/probably) would not see them holding their own children. This was horrible and I have not admitted this to my wife yet (I guess she knows now though). I sat on the chair not saying anything and feeling (just a bit) sorry for myself.
As the days have gone on, particularly after we got the news from the MDT meeting, my spirits and my faith have been rising. I have had several pictures given to me. The most encouraging one from my friend Errol (from above) who felt he had a picture of me playing with my grandchildren. Others have given me similar pictures and prophecies about complete healing from God (possibly using the work of the medical teams, I am not so super-spiritual that I don't admit they work miracles too).
Matthew and the church also have faith for complete healing. I guess if I was honest (and I suppose I should be or there is no point to this) I hope that they are right, but I don't have that level of faith myself. I am getting there, but I am not quite there yet.
I will confirm this later this week, after the consult, but I am expecting to be told that I will have to have chemo. In fact I have even been told which drugs they will use and how long it will last (the drugs have really long names that I can't remember and it will last 6 months).
I guess this is the current situation and that these are the salient points of this sorry tale so far.
I will try to keep this blog up to date as the chemo progresses, but I am not naive enough to think that I will be able to do this all the way though. If it gets to the point that I can't write I suggest that you check out Helen's Facebook site as I am sure she will update that as we go on.
There will be loads of people who help me though this, and I will try to mention them as I go along. I have mentioned some of them earlier (Matthew, Errol, Raph) but the most important person is my wife, Helen. She will face the worst of me and will have to mop up the bits (literally as well as metaphorically). She deserves your prayers as much as I do - in fact probably more.
thank you and god bless
Graham