Plain Sailing

It's been a plain sailing day today - perhaps a sure sign that I should rest up now - Any excuse eh!

I'm continuing to work from home and have got the infrastructure all sorted out.

The kids have finished up this afternoon for Easter, so things should get interesting work wise. Good job I have my bedroom / study / entertainment centre - It's not easy to word that and keep a straight face.

I suppose that I had better get in the Easter spirit and get down the local supermarket to get the kids easter eggs. Here goes...

The only thing of significance in my physical condition is that I am continuing to eat well and now have what I can only describe as a "ferocious appetite". Bring on the calories.  Maybe I won't look like Ghandi by the end of the summer after all

****** Strolls round in bedsheet / John Lennon sunglasses dreaming of passive resistance *********

I've made an effort to add the pages section on the right hand side of screen and the first full length article about how I came to be diagnosed.  One for when you want to feel depressed :-)

The "Huffty" is here with me listening to his favourite AC/DC song "Dirty Deeds Done Dirt Cheap".  A few weeks ago I put it on the i-pod and a few days later he found it himself and now keeps on playing it.

"Teach" - they are learning to read too quickly.

Kitten's off on another girls night out with the mums from school - should I be getting suspicious????  Ah well at least there's the massage parlour booking coming round at 9:00pm - Only joking!

Thinking of Others

Whilst this is a blog about my and my family's journey, nothing changes in how I feel about the people around me.  I have the luxury of becoming less self-absorbed as my situation stabilises and I know that there is a lot going on out there at the moment.

My thoughts are with Saucy Sue and Billy Fish on what is a difficult day for them.

I also think it worth mentioning that "Mr" Annestonefamily had a surprise party on Saturday to celebrate his cancer "all clear".   Well done "Mr" I hope that you had a superb journey into daylight.

Rather than just prattling on as usual I would just like to say hello to anyone who's reading.

I note a couple of "new" but familiar faces.  One "goes downhill" faster than anyone else I know :-)

The only "face" I don't recognise who is registered as a "public" follower of the blog is "Kitch".  Either I am thick or they are a man or lady of mystery - probably the former!

Think I could do with a cold beer, but it's time for dinner and chemotherapy tablets instead - doh.

Marching On

It's slightly odd taking a view on each day because there is usually so much going on that the days, weeks and months become a blur.   Only the truly wise don't rush and I have never been truly wise.

I'm working from a position of establishing myself in a new environment and framework.

I've been working from home again today and whilst I've had a good afternoon it was a frustating morning getting set up.  It is easy to take for granted how we have different enviroments tailor made for different roles.

That said, I am getting a lot more stability into the process at many different levels

• My home-working environment is now pretty much sorted - anything involving computers takes a little while to stabilise
• I am on top of eating with the chemotherapy and managing fine with it  (at least for the time being)
• I am establishing a new routine

Of course, I'm not inventing rocket science here but I am happy that I have been able to slip from one environment to another and accommodate my illness whilst still feeling that I am moving forward.  In many ways the whole process has been a valuable distraction as it could be easy to let your focus drift to places where it will not benefit you.

It is not just me who is adjusting to a slightly different daily reality but also Kitten and the kids; and that is a positive thing.  The shock of being ill has gone and a new pathway of normality is being unfolded.

A normal day

After the fun and frolics of the theme park it is back to business today.

It is perhaps no surprise that I crashed out early last night, but the rest also did me good.

I worked from home today but was able to do a full day's work.  I am not sure whether circumstances will allow me to continue to do so, but it's a footstep in the right direction.

Also a great boon and very uplifting (though normal for everyone else), I managed to each a crust of bread today without any water to take it down.  I haven't been able to do that for at least six months, as bread and meat are the most difficult.  This is a good sign for the chemotherapy, particularly as I was starting to struggle with much lighter foods.

Things are heading in the right direction; at least for the time being!

Still in good form

I can still rock with them down at the theme park. Must be watched WITH sound.

Feeling Positive

There is one immediately noticeable and not insignificant benefit of the chemotherapy - I am not feeling any pain from the tumour.

Whilst the pain I was experiencing was perfectly manageable, it was accelerating in the wrong direction.  I view the reversal as a postive sign not just for how I feel but also that the chemotherapy is going about its business.

My job is to balance my physical and mental condition.

I am going out shortly to the local theme park to join Sushi and Kitten and the kids.  Notoplip will be driving us there and there will be 3 cars for the two families, so I can quickly retreat if I need to.

I haven't been out in the day since I went to hospital on Thursday, so I will enjoy a bit of fresh air and seeing the kids having fun.

I have just finished my first Skype video call with "Cymraes and Grumpy",  so they will be happy!  It is good to be able to bridge the distance and be able to see your family as well as talk to them.  It also gives them confidence, being able to see your current state.

Kitten's Birthday

Lots of cards for Kitten this morning and there are flowers awaiting her return from the cinema with the children. She will be very pleased.

It is disappointing not to be more involved in the day, but there will be plenty of opportunity over the coming period to fill the void.

Kitten continues to be a superstar and it is a simple observation to say that love is the highest force that is available to us all.

Happy Birthday Kitten. 

Here's a rose from my soul xxx.

Settling in to Chemotherapy

I felt fine when I got up yesterday morning and the result was that I probably overdid it.

I am good at giving out advice but I can now hear the echo of my own words, that is when they are not been spoken or emailed to me. Relax and slowly, slowly catch the monkey seems to be the order of the day.

The net result of yesterday's early enterprise was waves of nausea such that I hadn't ever experienced anything like their violence before.  Thankfully though they had little end product, were dealt with, and lessons learned.

Finding the right things to eat is difficult because the appetite doesn't conform.  At the moment I am gravitating towards cold food and comfort food from my childhood.  When faced with being continually queasy it is difficult to think about food too much but you have to because there are so many tablets to take with and after it.  Although I have had intravenous chemotherapy I am taking tablet form chemotherapy twice a day through the whole period and there are also supporting drugs.

It's obvious to know that chemotherapy isn't a walk in the park but it is also a question of knowing when to relax and when to open up a little. For the first 3 days steriods form part of the medication. They are supposed to be an effective anti-sickness agent and also boost the system. They finish tomorrow and that may bring a truer sense of the way I will feel for the next period.

I am taking it much easier today and everyone's time effort and money invested in the bedroom is paying dividends already.  Needless to say I have been getting in touch with my inner nerd and connecting all my toys together: laptop to tv, laptop to main computer over network, laptop to work (Nice on BigG) - Every man needs a hobby, even when they are ill.

At the moment it feels like just finding the right rhythm for the occasion and hopefully the ride won't be too rough. Laying down in bed and calling "Nurse Kitten" seems a cool way of going about things but I will have to be sure not to overuse that particular ticket.

We are still receiving practical help at all levels. Today "Little Mellon" took my son to football and on Thursday we had more babysitting help whilst I was in hospital.

First Day of Healing Over

"35, 36, 37, 38, 39, 40"........That's enough 150kg bench press after the steroids. I will pick up tomorrow from where I left off; maybe a Zumba class (care to join me Sam the Eagle and the "Queen of Content Wizards").

I have been pumped full of drugs for nine hours, so it is time for some rest.

Thanks to Kitten and Notoplip for keeping me entertained.

I've also exacted revenge on D.A. Decorator with a dodgy text message.  I will spare you the details, but sometimes you have to give karma a nudge.

No More Thinking

It's all quiet on the Western Front.

It's time to relax, absorb the warmth that is around me and the drugs too!

It has been confirmed that I will receive the trial drug, bevacizumab, so I'll leave it and the rest of the therapy to get on with its business.

We've been for a meal with the children (boogle and huffty) tonight and they were on fine, entertaining form.

It's Kitten's birthday on Saturday and she deserves a good one.

The Fish Point The Way - The Mantra

Billy the Fish has introduced the fish to the aquarium this evening, heralding an era of calm.

Pre-Chemo Beer and Curry

It was a good night for the pre-chemo beer and curry.

I knew that I would come in for a bit of stick and I wasn't disappointed.

The evening was lit up by the rather disappointing Chicken Tikka Masala that a few of the boys ordered, which apparently tasted of cheese.

There's a school of thought that says "If you order a Chicken Tikka Masala at an Indian restaurant then you get what you deserve".  But, more importantly it was the cue for "D.A. decorator" to slip into entertainer mode. He's a law unto himself and the antics are probably best left in the curry house.  Suffice to say that I spent a fair portion of my time with my body hurting from laughter, which is a refreshing change.

Thanks to everyone for coming, to Notoplip for organising and I believe that I have to thank D.A. Decorator in advance for organising my memorial dinner next year.  I eventually escaped his clutches (he's a big old lump) as he cuddled me outside the restaurant saying "I'm really going to miss you man".

There's no room for a weak psyche around this lot.

Anything past 9:30pm is hard work for me so I'm "cream-crackered" today, but cheered by the delivery of my tele and laptop. I am geared up for the next few months and looking forward to getting on with it.

Chemotherapy Starts Thursday

Kitten and I have been for the pre-chemotherapy meeting at the hospital and it has been confirmed as starting Thursday (assuming no problems with admissions).

I've agreed to participate in the bevacizumab trial, so I will await the results of the randomisation to see whether I am in the control group or the bevacizumab group.

We had a lengthy conversation that helped to cover a lot of issues for us.  One of the things that surprised me was the opinion that the tumour is likely to have been growing for less than a year.  At 10-11 cms long it suggests that it is quite agressive, so all the more reason to get on with the chemotherapy.

The only other thing of note is that I rang about my television issue and a new one is being delivered tomorrow - I can't quibble about the service.

That 's the news - now off for the the pre-chemo beer and curry!

"Annstonefamily" please see my comment on the previous post.

Unwinding

There has been a visit from kitten's parents this week and my parents are visiting this weekend.

It is good to see everyone before the treatment begins.

Whilst I am holding up well since being on iron tablets, recently I am getting tired quicker, feeling more uncomfortable and the last few days seem to have been much more fractious.  My feeling is that I'm experiencing a similar situation that many of us recognise when we are working hard in the final days before going on holiday.  Just as we start to relax we seem to come down with a a cold to take on holiday with us.  This is what it always feels like but it's a moot point as to whether the cold is already bubbling underneath and being held in abeyance until we relax or whether it suddenly appears as we relax.

Wednesday will be my last day in the office, though the intention is to work from home and make occasional half-day journeys in, as and when I feel ok.  The plan is to "play it by ear" and everyone has been very accommodating in allowing this initial approach.

If I'm fit I will be able to hook the laptop up to the new TV to work from.  Laptops are ok for simple tasks but if you have anything more "meaty" then a bigger screen is useful.  I was doing a passable impression of "Edward Remote Control hands" with the TV for a while but there is no occasion to be stuck in the room for any length of time at the moment! That "little toy" will come into its own over the coming months but, for now at least, the gloss has come off it a little as there is a "humming" noise that shouldn't be there - looks like it will have to go back for a replacement.

On Monday night there will be a "Pre-Chemo Boys' Night" out, which translates into a beer and curry (though I hasten to add that there won't be any beer for me).  A pre-chemo night may seem a little odd but it doesn't challenge the "Dog Wake" that was held by 20 of us when one of Notoplip's two dogs sadly passed away a few years back.  The bar staff seemed most confused as to whether we were telling the truth and more so when someone started ordering a "One Dog" alcopop instead of the branded "Two Dogs"

From there on in it will be a change of gear.

TV heaven

'IT' has arrived!

'IT' is on the wall and fully functional!

I have been the first to use the remote, choose channels and lay watching 'IT' in the comfort of MY new bedroom (with half a wardrobe!)

Obviously, when Swordfish returns home from his hard day grafting, he will want, nay, need or even demand time to lay down, relax and enjoy the same pleasure as I have done.

He will have to find the remote first though!

Tee Hee!

End of Phase I - Thoughts, Thanks and Lessons

So the Phoney war is over.  All the pieces of the jigsaw are on the table and it justs requires the Marsden team to decide on the route through the labyrinth.

It's been an interesting journey to this point.  Naturally, not a journey I would have chosen but there are good and bad things that we all have to confront in all aspects of life.  There are lessons that we learn from events no matter how seemingly large or small.

"Phase 1", finding out exactly where I am physically, has largely been a journey of emotional adjustment not just for me but for everyone around me.

When one is at the centre there is no real choice but to accept the situation and I would liken it to getting into a cold swimming pool.  We have all sat by the pool and watched other people getting in.

There is Jack the Lad who may dive head first and take the shock, making light of it to exaggerate the image.

Then there is the Bikini clad lady who walks in up to her midriff drawing sharp inward breaths and hunching her shoulders forward whilst clenching her arms to her body and flapping her hands like penguin flippers.

The simplest way is to just accept that you are getting in the pool and walk down the steps one by one until you are up to your neck in water.  That is where you are going to be for the next while and your body and mind adjusts bit by bit.

Once you are in you have to swim and constantly adjust or just make sure that you keep your head above water.  Either way you have to make it to the other side.  There is no choice in the matter.

Of, I appreciate that there others who have had to get in the water with me. Kitten and I have made lots of "thank yous" along the way but we both want everyone to know how grateful we are for the help, support and generosity we have received.

I will make mention of the school this evening because Kitten and I went for a parents' meeting this afternoon.  Taking the children through this experience is the least desirable aspect of the whole thing and the children are in the school's care almost as much as they are in ours.  Everything possible has been done to accommodate them and the school has been supportive of us on a personal level as well as a professional one.  Kitten and I will continue to be creative in how we approach our childrens' needs and we appreciate everyone's help both in and out of the school.

If there had been a lot of pain during these last couple of months then there wouldn't have been so much time to think, but there hasn't.  In the last couple of weeks I have started to get a little pain and also get tired easily, but I look much healthier than I did at the beginning of the year.

The hair will be reduced to grade 1 on Saturday so that I don't have to watch it fall out lump by lump and the bedroom will be ready for me to work remotely from the office, if I am able.

Expect there to be a lot more BS emanating from these fingers in the next period.

Endoscopic Ultrasound Ok

Whilst there is nothing remarkable about an endoscopic procedure, electing to take the previous one without sedation was a mistake.  Remember that the medics weren't looking for tumours in the oesophagus and the experience was not one of which I have fond memories.

The ultrasound version is slightly different because there is a probe on the end of endoscope that is wider so sedation is a given. That's a good job because bad memories evoke fear and as I was waiting from my appointment time of 8:45am until well after 10:00 Mr Fear was moving closer and closer from the bedside chair until he was perched next to me.  The mind can play tricks on you because there isn't really anything to be afraid of.  So I got a grip, sent Mr Fear packing and got on with the import business of spending a couple of hours being smashed on Pethidine and Midazolam.

The ultrasound wasn't a pleasant experience but the sedatives made a huge difference, which was important as the procedure was much longer than a standard one.

The results analysed the tumour in detail and it seems to be longer than earlier thought (10cm).  It was already known that there were other local malignancies but the endoscopy provided greater detail.

Crucially, the tumour is still deemed to be operable.

The Fish are "Calming"

Just as I am getting a bit 'het up' along comes Billy the Fish with the fish tank.  Fish to follow next week after it has settled.

My front room is looking more serene already.  By next year not only will I look like Ghandi but I will also have his temperament.

Many thanks to Billy the Fish and Saucy Sue (collectively known as SandD).

I showed "Billy" how to get his icon up, so I will give you three guesses as to which one it is.

The Formalities

A bit of a frenetic day, but things are getting calmer.

The endoscopic ultrasound is tomorrow, so "nil by mouth" after bedtime tonight.  I believe that I will get something that is close to a full anaesthetic, but isn't, so I should be home shortly after lunchtime.

I've delivered a letter the hospital detailing the issues that I would like to discuss when I get together with Oncology next week.  Although that might seem a little formal, I think it important that I get the most out of my last consultation before I start chemotherapy and it will just act as a backdrop for what will ultimately be an informal conversation.

I have been told informally that chemotherapy will start next Thursday, 25th March.  The timing is slightly unfortunate because it is just before Kitten's birthday on the 27th.  Perhaps we' ll celebrate before.

So, assuming tomorrow goes ahead, it will be good to finally know what cards I have in my hand.  Monday's meeting will tell me that.  I'll know how many rounds of chemotherapy I am "in for" before the operation and I will also decide whether or not I will participate in the ST03 clinical trial.  However, assuming that I take part in the trial, I am not sure when I will find out whether I will be in the control group or the bevacizumab (Avastin) group.

Perhaps it will be when the needle goes in!

Temperance - I Kept my Cool (Just)

The postponment of Friday's endoscopy left me feeling furious.

I'm not he first person to suffer from a delayed appointment but the endoscopy has drifted away from the rest of the tests.  The revised date of 30th March represented a serious delay in fitting the jigsaw together. Remember that the last procedure was performed on 2nd March.

My anger, which I could only attempt to control rather than dissipate, was borne of worry that the condition could spread because of a delay to the start of chemotherapy.  I did my best to keep myself in check last night but, initially, found it hard to get to sleep.  I think that this is the first time that I have wrestled to keep myself in check since being diagnosed.  There have been moments where I have lost it over something unrelated, but the rest of the time it hasn't been too difficult. 

Even though I want to just take control of the situation I decided to stay calm and wait for my case nurse to get the message that I left with her colleague yesterday evening.

By 9:30am there still wasn't a call, so I picked up the phone.  No message had been passed, so that explained why I hadn't been contacted.  Neither had my case nurse been appraised of the postponement.  She promised to contact the doctors immediately to see if an alternative appointment could be made.  She also suggested that I keep my appointment with the Oncology team (next Monday) to voice my concerns.

As soon as I put the phone down there was a call from one of the registrars who had been working behind the scenes to reorganise the appointment with the same doctor but at a different hospital.  So, I am back on track, considerably calmer and pleased that I chose to keep calm (at least outwardly) and not let emotion get the better of me (some of you will know that was very restrained of me).

So, I am in hospital tomorrow morning to fit the last piece of the picture together before chemotherapy begins - an endoscopic ultrasound to determine the tumor's size and depth.

I can't say that I am looking forward to chemotherapy in a physical sense, but mentally and emotionally it's time to "Bring it On".

A Dampening of Mood

I received a call this afternoon to say that the endoscopic ultrasound procedure that was scheduled for Friday has been postponed.

This was seen as a pre-cursor to my meeting with the Head of Oncology on Monday, which in turn was a pre-cursor to me starting chemotherapy.

It was suggested that an alternative date of 30th March has been pencilled in, but this seems a long way away from the laparoscopy (which was the last event on the 2nd of March).

When you don't have secondary cancer you want to keep it that way!

Unfortunately, my case nurse is not available today.  I will have to wait until tomorrow to speak to her in order to get a handle on whether chemotherapy is likely to be delayed.   Another case nurse suggested it can't start before the endoscopy is peformed whereas the department that will perform ithe endoscopy contradicted that view.

There is always scope for arranging the procedure at an alternative venue, but I guess not by Friday.

These sort of blips are normal and its test one's ability to keep the feelings in check.

Patience is a virtue, but tenterhooks are a pain in the butt.

Goodbye to Belly Button Fluff

In a year's time or less I hope to be able to report news as welcome as yesterday's news for annestonefamily.

In the meantime all I can report is the end to the scourge that is belly button fluff.

Could it be that the midwife who delivered me didn't like the look of me, or was it just bad knot tying that made me susceptible to the gravition of fluff towards my belly button?  Whichever it was there must be some reason why a man can take a bath and an hour later be plagued by this scourge.  Perhaps there is a belly button fluff monster who creeps up behind you and chucks it in, making good his escape whilst you are focused on matters more important?

Whatever the truth behind its appearance the fact is that it doesn't discern when is appears and you only become aware of it at the most inconvenient moments.

If you are young and single (or mature and adventurous) then ensure that you remove any evidence of belly button fluff when out on a date.

Being a married man can lead to complacency.  Whilst belly button fluff is not attractive it is not generally considered as grounds for divorcce, so it can slip off the radar a little.  That is until you have to have regular hospital appointments where stomach inspections are "de rigeur".

As you get up onto that "couch" you suddenly realise, "Sh1t, I haven't checked for belly button fluff".  You then have to quickly and effectively dispose of it without being spotted.

It's large, it's dark, it's hairy and fluffy

But it isn't partcularly smelly

It rushes to greet me from all over the world

And it nests in the heart of my belly

It is at this point that I report a change of circumstance.

When the sutures from my laproscopy came off I realised that the kind doctors had made my belly button an impossible target for the "belly "button fluff monster".

It's a small victory, but it feels good.

Good news for "annestonefamily"

I have just noticed a comment posted by "annestonefamily" and their news of Mr "annestonefamily" being given the all clear.

I can hear the champagne corks popping from here.

Enjoy the moment and I hope that you both stay happy and healthy for many years to come!!!

Regards

Trial Drug - Bevacizumab (Avastin)

Bevacizumab (which is also known as Avastin) is a drug that is already used in the treatment of other cancers. Oddly enough it is in the news today as one of the drugs that the NHS is allegedly "denying" cancer patients on cost grounds and also because it has failed a trial for colrectal cancer.  It was also recently in the news for failing an advanced stomach cancer trial.

It is usually involved in the treatment of advanced, often metastatic (secondary), cancers so the trial that I may be involved in represents a departure from that principle. 

It is a targeted therapy rather than a chemotherapy drug.  Cancers need to develop their own blood supply to grow and Avastin is thought to work by blocking its blood vessels.  Avastin  is thought to work by blocking a protein released by both normal cells and cancer cells.  The protein is called VEGF and is produced throughout the life of the tumour.  Avastin is a tumour starving therapy, aiming to starve the tumour of nutrients and oxygen that it needs to grow.

The tumour sends out VEGF to nearby blood vessels causing new blood vessels to grow towards the tumour (angiogenesis).

My documentation from the hospital states

"Adding bevacizumab to chemotherapy has been used to treat patients with bowel cancer, lung cancer and breast cancer and has been shown to improve the outcome of the disease.  We are now tring to find out whether this is also the case for patients with stomach cancers like yours".

This statement is perhaps a little economical with the truth as it makes no mention of the fact that current treatments are largely with advanced metastatic cancers and it also make no mention of cancers where it has not been effective. There are also a number of quite serious side effects some of which are fatal.  I'll mention those later.

Before continuing with any negative thought on the drug I want to accentuate the positive.  Remember that I have said that my primary aim is to reduce the tumour as much as possible before surgery, so as I am thinking of participating in the trial for some simple reasons

• Avastin is believed to help deliver chemotherapy to the cancerous tissue
• High levels of VEGF in my condition (gastric adenocarcinoma) has been shown to correlate with poor five year survival rates (so targeting VEGF would seem a reasonable strategy)
• I can pull out of the trial at any point
• Only 50% of those entering the trial receive Avastin - so I may not receive it even if I participate in the trial

When considering the negative aspects of the drug the following text is taken from Avastin's own website.  It should be remembered that as the data is taken from Avastin's current use it is largely from patients who have advanced cancers.  I've got strong vasculature, excellent blood pressure (on the low side if anything) and the only side effect that particularly worries me is the Gastrointestinal perforation (which can be fatal)

I am forming questions for the team based on much of this information.

Gastrointestinal (GI) perforation: Treatment with Avastin can result in the development of a potentially serious side effect called GI perforation, which is the development of a hole in the stomach, small intestine, or large intestine. In clinical trials, this event occurred in more people who received Avastin than in the comparison group (0.3% to 2.4%). In some cases, GI perforation resulted in fatality. Avastin therapy should be permanently stopped if GI perforation occurs.


Surgery and wound healing problems: Treatment with Avastin can lead to slow or incomplete wound healing (for example, when a surgical incision has trouble healing or staying closed). In some cases, this event resulted in fatality. Surgery and wound healing problems occurred more often in people who received Avastin than in the comparison group. Avastin therapy should not be started for at least 28 days after surgery and until the surgical wound is fully healed. The length of time between stopping Avastin and having voluntary surgery without the risk of having surgery and wound healing problems has not been determined. Treatment with Avastin should be stopped at least 28 days before voluntary surgery and in people with surgery and wound healing problems that require medical treatment.

Severe bleeding: Treatment with Avastin can result in serious bleeding, including coughing up blood, bleeding in the stomach, vomiting of blood, bleeding in the brain, nosebleeds, and vaginal bleeding. These events occurred up to 5 times more often in people who received Avastin. Across cancer types, 1.2% to 4.6% of people who received Avastin experienced severe to fatal bleeding. People who have recently coughed up blood (greater than or equal to a half teaspoon of red blood) or have serious bleeding should not receive Avastin. Treatment with Avastin should be permanently stopped if serious bleeding occurs (ie, requiring medical attention).

In clinical trials for different cancer types, there were additional serious, and sometimes fatal, side effects that occurred in more people who received Avastin than in those in the comparison group. The formation of an abnormal passage from parts of the body to another part (non-GI fistula formation) was seen in 0.3% or less of people. Severe to life-threatening stroke or heart problems were seen in 2.4% of people. Too much protein in the urine, which led to kidney problems, was seen in less than 1% of people. Additional serious side effects that occurred in more people who received Avastin than in those in the comparison group included severe to life-threatening high blood pressure, which was seen in 5% to 18% of people, and nervous system and vision disturbances (reversible posterior leukoencephalopathy syndrome), which was seen in less than 0.1% of people. Infusion reactions with the first dose of Avastin were uncommon and occurred in less than 3% of people, and severe reactions occurred in 0.2% of people.

Common side effects that occurred in more than 10% of people who received Avastin for different cancer types, and at least twice the rate of the comparison group, were nosebleeds, headache, high blood pressure, inflammation of the nose, too much protein in the urine, taste change, dry skin, rectal bleeding, tear production disorder, back pain, and inflammation of the skin (exfoliative dermatitis). Across all trials, treatment with Avastin was permanently stopped in 8.4% to 21% of people because of side effects.

Important Things (Gadgets)

Whilst I am continuing my researching into clinical trials (with the help of my GP and the family Professor), I have also been closing the deal on essential gadgets.

I am hoping to continue working at some level during chemotherapy and during the recuperation process.  I am assuming that I will not know whether this is feasible until I get there but I felt that the purchase of a laptop was essential.  If I work I will need to do so in peace so it will be from my office (the bedroom) and a desktop would be out of place there.

The television debate has also been ended with the purchase of a 32" Sony to be mounted on the bedroom wall.  Big enough for the room and a decent TV with all the inputs (including for a laptop).  More importantly big enough to watch the World Cup on (especially with the addition of a cantilever arm to ensure desirable positioning). Daytime TV is not an interest but there are plenty of decent box sets around.

Neither purchase may seem prudent but there is a gruelling period to get through and they will keep me connected, whilst their siting will allow me to roll over and rest whenever I need to.

With the bedroom close to completion there are no more major purchases to be made.  When  facing a long period of illness it is important to be prudent and "Prudence" is now knocking at the door.

ECX - Standard Chemotherapy

ECX - Epirubicin, Cisplatin, Capecitabine (Xeloda)  - is the standard chemotherapy treatment being offered for this condition.  I will receive it if I stay outside the ST03 Clinical Trial.

In this post I will be explaining the outline of the administration and side effects.  It may well be of interest to the medics amongst you but is also useful to help me remember the information for use in conversation with my medical team.

Before going into detail it is worth mentioning that if you pick up a packet of paracetomol you will find a whole list of cautions and possible side effects so many of the things in this document are unlikely to happen.  The particular combinantion of drugs does make it likely that I will temporarily lose my hair, so that means that my mates who are receding will have one up on me for a while.  The only side effects that concern me are the possibility of hearing damage (particularly because I have suffered recurring ear infections and tinnitus) and the possibility of anaemia, because it was severe anaemia that led to my diagnosis.  Although my anaemia has easied by haemoglobin is still below regular levels.

In an earlier post I provided links to information about each of the three drugs.  Here is how they are administered.  Remember that I will undergo a minimum of 3 cycles of chemotherapy before surgery, each cycle lasting 3 weeks.

Epirubicin is given as an injection through a cannula (thin tube) in the arm.  The injection is repeated every three weeks.

Cisplatin  is given as an intravenous infusion (drip) through a cannula in the arm.  The process takes six hours, which include an hour of intravenous fluids before and after the drug to protect the kidneys.  It is administered once every three weeks.  There is an overnight stay (for at least the first application) to allow monitoring to take place.

Capecitabine is given in tablet form. The tablets are taken twice a day for 21 consecutive days following each epirubicin and cisplatin.

Likely Side Effects of the Combined Therapy

Sickness: For the first few days there may be nausea or vomiting.  This can be controlled with anti-emetics (anti sickness drugs). The anti sickness drugs could cause constipation.

Hair Loss: This type of chemotherapy usually causes loss of hair, but the hair grows back once the treatment stops.

Effects on blood counts: The blood contains three types of cells: red cells, white cells and platelets.  All of these can be temporarily lowered by chemotherapy.

Low white cells: can lead to an increased risk of infection.  Antibiotics may be needed to help fight the infection.  The white cell count is monitored before each cycle of treatment to ensure that it is safe to continue.

Low platelet count:  can lead to an increased risk of bruising or bleeding.

Low red cells: can cause anaemia and can cause tiredness and breathlessness.  A blood transfusion may be required.

I have already documented that my condition was discovered largely due to it causing me to be severely anaemic (at transfusion levels), so this is obviously something that I should keep an eye on.

Less common side effects

Rash: can cause a red rash on the skin while taking capecitabine, particularly on the hands and feet, or in areas where tight fitting clothing has been worn (e.g. belts).  In rare cases it can cause temporary difficulties in walking.  The rash stops once the drug is stopped.

Diarrhoea: caused in about 50% of patients.  It can be controlled with other drugs or by reducing the levels of chemotherapy.

Sore mouth: can be caused by capecitabine (including ulceration and gum shrinking)

Chest Pain: can cause chest pains and palpitations.  There can be a number of causes of the chest pain but it is possible that it is being caused by a temporary narrowing of the blood vessels supplying the heart (angina which may lead to a heart attack)

Hearing Loss:  cisplatin may cause damage to hearing or worsen any pre-existing hearing impairment.  Symptom include difficulty hearing and tinnitus.  This is something to watch out for as it was recurrent ear-infections that originally took me to the doctor last summer.  I have suffered temporary but fairly lengthy periods of tinnitus (up to 3 months).  On one occasion of about 2 months I suffered what I considered to be excruciating tinnitus.  At night time (i.e. when there was not any other noise distraction) it was the equivalent of someone standing over me and constantly screaming in my ear.

The Risk of Blood Clots Associated with Cancer and Chemotherapy
There's an increased risk of having blood clots and deep vein thrombosis when you have cancer.  The risk is increased by chemotherapy

Effect of chemotherapy on fertility and contraception
Chemotherapy can damage the ovaries and testes.  This can result in temporary of permanent infertility and can cause premature menopause (though I don't think it will affect me :-) )

It is important not to conceive during chemotherapy due to possible effects on the foetus.

Before Further Medical Discussion

I have found the full medical document on the clinical trial that I may particpate in (ST03), but before publishing the link and discussing the "whys and wherefores" I thought that I should put up a photo to show my current state of health.

I believe that it is important to do this so that we can monitor my appearance as I progress through chemotherapy.

Some have said that I still look vaguely anaemic (which I am).

Others have said that I still have a wicked smile on my face.

I would agree with those who suggest that I look a little gaunt.

See what you think.

I have also been suffering from a slight blurring of vision and am wondering whether I am becoming delusional.  I keep thinking that I am surrounded by super heroes.

Down to Business - Treatment Programme

We both enjoyed going out last night even though it was only an early one!

I treated myself to a glass of beer, but didn't even drink it.  I must be ill!  I haven't been told not to drink, though I just don't feel like it and am also keen to keep my immune system as "tip top" as it can be.  I've drunk 3 glasses of wine (and, after last night, half a glass of beer since my original visit to the doctor's on 30th December)

Anyway, now it is down to the serious stuff.  My appointment with the Chief Oncologist a week on Monday and the likely commencement of treatment soon after means that I have to consider the issues.

The clinical trial that is available to me is a randomised trial.  If I enter it then there is still a 50% chance that I will receive the standard treatement.  The standard treatment (ECX) is represented by the left hand side of the chart shown below.  The trialled drug approach is represented by the right hand side of the chart (ECX + B)

The key components and the flow of the chart are simple

• 3 cycles of 3 weeks of chemotherapy
• 5-6 week recovery
• Surgery
• 6-10 weeks recovery
• 3 cycles of 3 weeks of chemotherapy
• A further 6 applications of the additional drug at 3 week intervals

Click on the chart to see it in a separate window, as it is too small in this window.  Use your browser back button to return to the main page.




So, the first phase of treatment is chemotherapy.  The chart shows 3 cycles of 3 weeks of chemotherapy but this could be extended up to 6 cycles if it is felt that the size of the tumour requires it.  That decision will be based upon the results of the endoscopic ultrasound that I will be having on 19th March.

Before we take a look at chemotherapy let's be honest; nobody would choose to undergo chemotherapy unless there was another option.  However, given the choice between probable death and chemotherapy it doesn't seem so bad at all.  These things are relative.

The list of potential and severe side effects seems endless but I have spoken to people who have experienced it and for them it has been a tolerable experience.

Chemotherapy is a single word that describes a number of different treatments for a number of different cancers.  It is typically a combination of different drugs.  The ECX referred to in the chart is a combination of 3 different drugs Epirubicin, Cisplatin and Capecitabine (also known as Xeloda).  This is the "Gold Standard" treatment of my condition (adenocarcinoma at the junction of the oesophagus and stomach).

Note that you do have to be careful when gleening information from the internet.  The Wikipedia article seems to suggest that large ardenocarcinoma tumours of the oesophagus are not operable.  It does state that they can become operable after chemotherapy and radiotherapy but the suggestion is that it is palliative care rather that a direct healing path that is the treatment route and I now know tha t to be misleading and the outlook brighter.

The bottom line is that I would benefit enormously from a reduction in tumour size.  The way I see it is simple - the less tumour there is after chemotherapy the less of my oesophagus and stomach has to be removed and the better my chance of a successful operation and of "shaking off" the cancer.  This viewpoint is influential in forming my view of the trial.

If I have the standard treatment then the diagram shows that the span is likely to be 34 weeks whereas the treatment involving the administration of the trial drug takes a full year.

Ready for the Weekend

I'm off soon to meet Kitten for a night in South West London.

Our babysitter is ill, so I wish her a speedy recovery.  The kids will be spending time with Lance Corporal and her clan instead - Attttennnnnsshhhhhun, kids.

It's looking like chemotherapy will start within the couple of weeks.  I might try and juggle with the dates a little, as Kitten's birthday is the 27th March.

I have started my research on the chemotherapy options.  I am researching both the standard option as well as the Clinical Trial option and shall be posting my thoughts as well as some of the details as to what chemotherapy entails.  I may even attempt to scan the documents in!

I was working at a customer site today and had the pleasure of meeting "annstonefamily".  We had another useful chat and I wish her husband all the best for Monday.  He should get the all clear.

Time for some tapas...........Mmmmmmmmmmmm

Time for a Night Out

It is easy for the situation to become all consuming and forget that you have to make time to spend together outside the home as a couple.  Most of my recent free time has been spent with the kids. So my thanks to our friendly neighbourhood babysitter for making it possible for Kitten and I to go out tomrorrow night.

As I am not drinking it will mean that Kitten can let her hair down and have a few drinks if she likes.  Saucer of milk, anyone?

Nothing fancy going on, probably just tapas, but a chance for us to relax.

Kitten is pushing to get her new bedroom layout complete, so I feel sure that will be high on her agenda.  I'm not sure that I have ever seen anyone get so excited about cupboards, wallpaper and carpet!

Planning for the Next Phase (attn Lance Corporal)

The way I see things there are 7 distinct phases to a successful journey through this illness

1. Diagnostic - Understanding
2. Chemotherapy - Collective Corrective
3. Recuperation - Healing and Preparation
4. Operation - Faith
5. Recuperation - Hope and Healing
6. Chemotherapy - Obduration
7. Happy Dayz

During the first diagnostic phase I have talked about not seeing the journey as a "battle" or a "war".  My reasons are simple

• I do not have a virus.  The illness is self-propagated
• I have no intention of going to war with myself (although some might argue that I frequently do)

As I see it the key to phase I is about understanding one's position and coming to terms with it.  Phase 2 is a completely different scenario.

Phase 2 "Chemotherapy" represents an opportunity to apply a degree of correction before any operation takes place.  The more benefit I can derive from the chemotherapy the less damaging the operation is likely to be, as the primary objective is to shrink the tumour and restage it.  I have termed it as "Collective Corrective" because I feel that my approach to chemotherapy will have some bearing upon its success.

I feel that Phase 2 requires an approach that is heavily structured.  Effort from Kitten and all our generous helpers has already gone into providing me with a retreat space (the bedroom).  It's a shame that I didn't take a "before" photo because the difference now is startling. Uncluttered, clear lines and bright is both how it is shaping up and howI feel it should be.

The approach I want to adopt falls short of being military like, but it falls into that sphere - "Lance Corporal this is your time!".

I am not stupid enough to think that I can dictate how I will feel during the chemotherapy, but devising a structure to approach it with will give me something to measure myself against as I detach from everyday activities such as catching the train to work. I see rest and a healthy approach to the application of chemotherapy as being the key factors.  However, you can expect things to get a little esoteric around here as I attempt to complement the established healing powers of science with whatever I can throw forward from my "bag of philosophy"

Esoteric thinking may not heal my illness but it will keep me sane (in my minority of 1) whilst the chemotherapy does its work. I am also aware that I am recieving postive thoughts from a diverse cross-section of people. The spectrum is as wide as from Christian prayer to remote Reike healing.

Naturally, I extend my thanks to anyone who is taking the time and effort to focus on helping me get better including all the blog readers and participants.

Time for a sarnie!

Absorbing the News

I've had a heart-warming reaction to today's news from many people.  Many thanks to everyone for your thoughts.

In some ways it is a funny thing but I was quite stoical about it.  Of course I am happy, given the alternative, but it is a significant step on a longer path.

What is pleasing is that the pathway is unfolding and some of the doubts are being removed.

I am in a content frame of mind and Kitten is overjoyed with her new bedroom cupboard.  There is still one to go (but I will let her explain that to you).  Many thanks to  to Fred and Barney for their efforts.

So, "soulful" best describes how I am feeling.  For me this is a journey; a marathon not a sprint and a time to reflect after clearing the first hurdle.

The whole experience, is extremely humbling and accepting it is the biggest part of starting the recovery process.

Here's an old ditty of mine that sums it up.

Moments of Reflection

The water's edge caressed my feet
I asked it why our "souls" should meet
It jigged its own suggestive dance
And threw the sun unto my glance

There was no need to ask again
It took away my heart-felt pain
It said
      "Relax and play like me
       My light is there for all to see"

No Secondaries Found

It has been confirmed today that I do not have secondary cancer. The biopsy of the abdomen did not show anything malignant.

Just to re-iterate; secondary cancer is technically referred to as a Metastasis and refers to a cancer spreading from one organ to another.  The transport happens via the body's lymph.

The key issue is that surgery was not an option had the biopsy shown evidence of secondary cancer.  The outlook would have been bleak, but now that both of the doubtful sites (liver and abdomen) are clear it's likely to be no worse than a fortnight in the chalets at Butlins.
 
The route from here seems as follows:

I will have an endoscopic ultrasound (EUS) procedure at the Royal Marsden Fulham on 19th March (I was advised today).  This procedure will confirm not just the length but the depth of the tumour - the length of the tumour has been known since the original endoscopy to test for ulcers and coeliac disease.

The following week (beginning the 22nd) I will meet with the team to discuss the results.  The size of the tumour is important because it will determine the number of chemotherapy cycles I will have before the operation.  The initial suggestion was 3 cycles, but this could be increased to as many as 6 cycles.  The point is to reduce the tumour as much as possible to reduce the severity of the operation.

I have been advised that chemotherapy is likely to start at the end of the week commencing 22nd March or the beginning of the week commencing 29th March.

Naturally, I am happy that I don't have secondary cancer.  I am, however, nervous about the length of time until the endoscopic ultrasound as I would rather we got on with the healing rather than the diagnostic process.  When discussing the situation this morning with my case nurse she pointed out that if the cancer was able to metastasise in the meantime then they would probably not be able to contain the disease anyway.

Before today's news I was intending to post an article about the changes I am making and about getting the best out of the chemotherapy.  I will post my thoughts this evening as this really is the next stage.  There is research for me to do on the clinical trial but it is now time to focus on how I get my body to the operating table in the best possible frame.  I feel that to be the primary factor in how my recovery shapes up.

Most importantly, assuming that I make it through this process I want to come out with the best opportunity of avoiding any future relapse. Right now I, and my close circle, are living in a shadow.  I want there to be sunlight at the end of the journey.

Time to wind down

I guess that later this week I will have a definite answer as to whether or not the surgeon will be polishing his scalpel in readiness for me this summer.  As many of you know, I have always treated my body as a holy place of worship so I will expect any instrument placed therein to give a "Colgate 'ting' and shine" before being expertly applied.

After another busy weekend it is time for me to start winding down.  I've got plenty of work to do to make sure my role is covered at the office. I also want to do enough research on the chemotherapy options to have an informed discussion with the oncology team.

The most important thing though is to ready myself for the changes that are creeping up over the horizon.

On that note "Danny the Carpet Man" has been and gone this evening (good job Danny!).  Kitten is either taking a restful bath (as she suggested)  or she is upstairs stroking and nuzzling her newly acquired flooring.

The bedroom is coming together, so just the cupboards and the all important "World Cup TV" to go.  How will I have any of my mates visit in the summer unless there is something decent to watch the footie on?

Mmmmmm, a Budweiser mini-fridge may be a negative though given the current circumstances.

Kitten Let Loose

Ah ha! Swordfish has invited moi to be on his blog team. This allows me to write my own interpretation of events - the truth!

He is standing behind me as I write, correcting my punctuation, spellings, grammar and also trying to dictate what I should write.

I will wait my turn!

Standards of Care

The first thing to say is that

"If the NHS is a post code lottery then I have won it".

Living in the same borough as The Royal Marsden is a positive boon.

I should start by saying that I have never received poor health care from the National Health Service.  In the main, I can impart good experiences.  Where I have had gripes it is with how places are run rather than lack of care by medical staff.  Having said that I can't say that my wife has always been as fortunate as I have.

Regardless of past experiences what I can say is that the care provided by the Marsden seems to be on a different level to anything that I have encountered before. It is clear that they receive a healthy sized chunk of the pie from the NHS but there is also clear evidence of investment in the process and that the investment is being appropriated responsibly and thoughtfully to make the patient experience better.  There are many things that I can talk about regarding structure, processes and facilities but the overriding sense of the place is well run and, whilst "happy" would be an inappropriate word to use, in the context of the illnesses that the patients are suffreing, "contented" might not seem out of place.

In any organisation of such size I am sure that there are lots of problems behind the scenes, and my experience is not without its flaws, but here is a bullet point list of some of the good things that I have encountered.  Some of the points are quite general but others are little things that I believe improve the patient's experience.  Some of the points (such as pastoral care) are not as relevant in other aspects of medicine

• The hospitals are clean
• Cleanliness procedures seem to be followed as you would expect (no slapdash behaviour)
• You can see that an effort has been made to keep areas uncluttered (it helps them look physically sterile)
• Your case is handled by a team (all of whom seem to be well briefed)
• You have a case nurse who acts as a coordinator and reference point
• Staff are polite, well, informed, direct, honest in their appraisal and they LISTEN
• Care across different departments is coordinated removing duplication where possible
• Pastoral care is available as an integral part of your care should you feel that you would benefit
• You are advised if clinics are running late ( a large notice board in outpatients is a simple but very useful tool for keeping you at ease)

When you have cancer the psychological difficulties are as great as the medical process that you have to go through.  As a patient you soon get past the word because you are thrown in to an arena of rapidly progressing treatment.  Each case is individual and each cancer is unique, so the technology, medical and palliative care that you receive plays a huge part in whether or not you make it through.  However, it is a much easier journey with good support and understanding around you.  I am lucky to receive good support not only on a medical, family friends and work basis.  The removal of worries outside the medical arena makes it much easier to focus on the journey ahead.

Since I have been back to my GP I have also had great support from the head of the practice who has provided me with an "ear" outside the Marsden an has also done some research into the clinical trial that has been offered.  She has suggested some incisive questions for me to pose.  The area of clinical trials is perhaps the one aspect of my consultations which has left me less satisfied.  There is a need to perform trials to advance care for all patients but, after the initial consultation I was left with feeling that a more vulnerable patient might have subscribed immediately without thought.  I also feel that some relevant information wasn't provided.  I will be discussing the issues with the team before making any decisions and will post my thoughts here later.

I have spoke with "annstonefamily" today and it is encouraging to get advice from people who are coming out of the other end of the "sausage machine".  I have had a chance to ask about some of the challenges of the chemotherapy and the surgery from someone who has experienced it.  I very much hope that they get the "all clear" in a few weeks time.

The Power of Music

I've recently acquire an iPod (nice one BigG).  I haven't bought into the MP3 player phenomenom up until now because years of constant exposure to music whilst DJing left me disinterested in listening during my spare time.  Instead I've spent "downtime" like on the train to and from work reading or just relaxing.

I've realised that there will be periods where I am not going to be able to do much so I feel that music will help to fill this gap especially as I believe that it has an ability to touch the emotions and lift the spirit in a way that other media cannot.  I consider music to be the "food of the heart and the word of the soul".  It is not restricted by the linear format of words and, personally, I feel it also has a more direct and deeper connection to the emotions than visuals do.

I was brought up on rock music and this seems to form the bulk of my iPod selection rather than the dance music that I partied to and DJed for years.  This is partly because the analogue (vinyl) based dance music I own doesn't make the transition to MP3 player so well, but also because I am enjoying taking "fresh ears" to the music of my youth.

That said, AC/DC and Led Zeppelin have been on hold during this last week or so, as  I have been continously listening to a CD called the "Eternal OM", which contains exactly what it says on the tin.  Sixty minutes of  "Om" or "Aum" ing.  Now whatever your opinion on the subject of meditation, tuning into the repetitive but resonant sound, whether as foreground or background music, has had a deeply grounding affect and has helped me adjust to what seemed to be a slightly surreal reality.  It has helped me to concentrate my thoughts and stay focused.  It has also provided a source of amusement for the kids who love it.

I put the iPod on "Shuffle" (random play) for the first time when walking from the station to work this morning.  The two tracks it threw up before I arrived??

Gimme All Your Lovin' - ZZ TOP
Sick Again - Led Zeppelin

What price on that - perhaps the Aum has got further into my subconscious than I thought?

Rather than having a religion or set of beliefs I tend to adopt what I feel fits the occasion.  I use whatever I feel stimulates my imagination to help me achieve my goals and I anticipate that there will be plenty of space for the esoteric on my journey as well as for the oncologists and the surgeon's knife.  I am happy to use anything that I feel will be to my advantage.

Back to Life - Back to Reality

In order to ram-raid through the amount of tests I have just been through you have to be self-absorbed.

I have still been keeping an eye on everything and everyone around me and there comes a time when you have to reconnect and come to the surface and breath.

I've got work to ship and there are also plenty of events happening amongst my family and friends.  "Roxy's" (my cousin's) pregnancy was announced about the same time as my illness was discovered (I hope that you are in fine fettle, Roxy) and another cousin (who I shall refer to as "Swelly Belly" - in reference to the affect of gluten upon her system) got married a couple of weeks ago and since discovered she is pregnant!  Congratulations to her and her partner.

I spoke to Swelly Belly on the morning of her wedding and it was an emotionally charged conversation.  One of the few times that I could feel myself "cracking".  I couldn't make it to Wales because I wasn't feeling great and my daughter had only just arrived back from my parents.  But Swelly Belly grabbed a drink and gave me a call from outside the evening venue whilst over-looking the River Taff, which was a nice touch and made me feel like I was there.  The conversation was as relaxed as the morning's was not.

With only the endoscopy outstanding I am looking forward to a period of normality before, hopefully, starting route A of chemo / operation / chemo / return to good health.

Now I know what it feels like to be "drunk" again

When I was coming around from the anaesthetic in the recovery room yesterday I remember trying to say something to one of the theatre nurses.

I think it was just a wisecrack but, whilst I was forming the words beautifully in my mind, things were going wrong somewhere between the picture I had in my head and the message reaching the nurse's ears.

Whatever I was saying was coming out as "bbbblllllbbbbllbllblblbbl". 

I'm not one to give up easily, but I could see that by about the fifth time she was getting a bit sick of saying "I'm really sorry, but I can't understand what you are saying".

I just gave up, opting for a thumbs up sign and a gurning grin and I went back to snooze.

I was on the level where, had I been holding a kebab in hand, I could have had a meaningful conversation with the chaps in Chip Pan Alley last Friday night ( http://thebookofsilence.blogspot.com/2010/02/notoplip-shogun-and-kebab-frenzy.html )

"Good Dope - It's a Gas"

Kitten and "The Huffty" (my son) collected me from the Fulham Royal Marsden at about 4:30pm and we arrived home a little over an hour later.  I've been dozing since, courtesy of the general anaesthetic.

I hadn't done my homework on exactly what a laparoscopy entails as I understood it to be a fairly minor procedure and was more concerned about preparing myself for any news that might emanate from it.

The news was encouraging but not conclusive.  Whilst the consultant did take biopsies of the abdominal nodes for further analysis he said that they did not give him cause for concern.  He did not commit to saying that any growths were benign but the inference was that it was his expection that they would be.

It takes seven to ten days to confirm the analysis of a biopsy and the Marsden "gastro" team meet every Friday, so I imagine that I will find out what my treatment program will be after Friday, 12th March.

Meanwhile I am quite sore and a little drowsy.  I knew that a laparoscopy involved having "a camera through the belly" but I chose not to do any homework as I was more focused on staying relaxed around news of the results.  What I didn't realise was that "the abdomen is usually insufflated, or essentially blown up like a balloon, with carbon dioxide gas".

For those interested in the gory details, here is a useful Wikipedia explanation http://en.wikipedia.org/wiki/Laparoscopic_surgery

Time for another snooze.

The Spirit of Change

Today is St. David's day so it seems appropriate to take a take a poetic, philosophical and musical slant to recent events.

The current period is obviously a period of great change for me and those close to me.  Change can manifest in many different ways. I always liked the analogy of riding a bicycle where as you ride you constantly adjust. The constant adjustment is what keeps the bike in a straight line. This kind of change is snake like; a slow undulating transition. If you don't constantly adjust when riding a bike then you will carry on a straight line for a while but then the front wheel will start to wobble and you'll end up in a sticky heap on the floor. This kind of change is frog like. It appears to present itself in a quantum (just like a frog leaping) but in fact the energy has been accumulating over a period of time.

The moral is that if you do not go to change then it will come to you.

When change comes to you it can be difficult to deal with because it already has great momentum. I wrote the poem "The Spirit of Change" years ago to articulate this point. The poem was written on the night of a total eclipse of the full moon, an occasion which is viewed by many to be symbolic of great change. I was watching a football match on television when I had the central image of a stallion jumping through a wall and bricks flying everywhere. Football fans will remember the match because it was a hugely entertaining encounter between Liverpool and Newcastle (in 1996) which Liverpool won 4-3. Their victory effectively ended Kevin Keegan's attempt to win the Premiership with Newcastle.

When I wrote the poem I developed the image in my mind as if the horse had been frightened by a fire in the stable and had reared and kicked before bursting through the door and into the fields, galloping against the backdrop of a full moon.

If you find it difficult to read the text then click on it and it will appear in a larger window.

When I read the poem now it seems to me that my illness is somewhat like the "Spirit of Change" and that is why I don't view the situation as a fight.  The horse has already bolted and it requires craft to bring it under control.

Bringing the cancer under control is my "The Horse Whisperer's" job.  I have to keep myself happy and focused, to narrow the angles for the horse and bring it to heel.  If I have to use some brute force then I will, but I also have the medics to handle the gory stuff!

Tomorrow's the big day

The scheduling of an endoscopic ultrasound is being delayed for a simple reason. That is because it is not worth doing one if there isn't going to be any major surgery.

Tomorrow the laparoscopy will be performed and the surgeon will know immediately whether I have secondary cancer. If he finds something then a biopsy will confirm the situation but, as I understand it, he will know pretty much straight away.

Either I am clear in the abdomen and we can deal with the already diagnosed tumour at the junction of the oesophagus and stomach or I have secondary cancer and there will not be an operation.

I don't know when I will learn of the surgeon's findings but it is the nature of this game with everything moving so quickly. Until this test is done I don't know whether the odds are stacked with me or against me. That is the plain truth of the situation.

Regardless of what the surgeon finds he is only discovering what is already there, so I will do my best to relax and hope for Lady Luck to shine on me once more.