Darker Moments - Eating Deteriorates

Up until this week eating may not have been easy but neither has it been a chore.

There has been a marked deterioration over the last few days culminating in me finding it difficult to eat sliced bread that had been dipped in soup.

Hopefully there is room for some creativity before resorting to pureed food, but the decline has been quite startling.

What I do know is that I have been lucky up until now because many with my condition have this problem even with fluids all the way through ,whereas I am now close to six months after diagnosis.

What is perhaps more worrying is not knowing whether this has been brought on by the radiotherapy (in which case it is easy to live with) or whether it is simply the cancer progressing.

My overall health being good has made it much easier to navigate the last few months but such an obvious problem of not being able to digest simple foods is a stark reminder that my body is diseased and ultimately that is what cancer of the oesophagus is all about.

It's a bit  like being squeezed by ethereal and sinister hands from the inside.  I appreciate that isn't an image to enjoy over a bowl of cornflakes on the weekend but it tells a story.

I guess there may be a fight to be the first to the fridge for the smoothies from now on.

Perspective Changes again

First off, a happy birthday to Lindylu.  I hope that you have a good one.

Yesterday's conversation with the head of radiotherapy changed a lot of things.

The most important was realising that this isn't a sprint through therapy over the next five weeks, rather it is a gradual process until I am reassessed in seventeen weeks time.

It might seem odd that I didn't already know this but there is a gap between what information you are given, which questions you think of asking and what the facts are.  I have accepted long ago that one has to be slightly relaxed and that the moment will present itself when information is ready to be taken on board.  Following this blog for any period of time makes it obvious that you have to be adaptable in this situation as it constantly changes, whether through design or through perception.

The new time frame means that it is time for me to keep doing the things that I am doing well and improve on the others and be grateful that the process has longer to work.

Someone said to me today that it must be easier said than done to remain relaxed in these circumstances but the truth is that you become relaxed in any situation given time.  The same can be said about the gambler in a casino. The first time that you gamble each bet is accompanied by an adrenaline rush and there is less cold logic but, as you become more proficient a cooler head takes over.

One of the things that I will be putting in place is some regular appointments with the Mad Canadian oesteopath.  I have learned that he is not back until next week but when he returns I will use the diversity of his skills as an added tool in my healing box.

It interests me that many people seek out alternative therapies when the end of their journey with cancer has already been marked out, whereas I view complementary therapies as exactly that i.e. complementary to the mainstream approach.  The Mad Canadian has a few of the more esoteric healing arts up his sleeve and they will complement not only my treatment but the other things that I am doing for myself.

Roots

I was born in South Wales and my roots were sown on a council estate between Cardiff and Bridgend.

The council estate was not the best (sorry Lindylu and Roxy) but neither was it in anyway bad by today's standards.  Whatever it was I had a happy few years there in the days when you just went around to someone's house, opened the back door and shouted "It's me. Are you in?"

The streets on the town were and are largely named after trees.  I lived in Oak Road and there is Sycamore Road, Birchgrove, Elm Road and Willow Road.

Well, I have definitely gone up the world because the Radiotherapy "suite" at the Marsden is also named after trees but I am in the Juniper suite.  How posh is that! It's almost like I should be handed a scone with jam and cream upon exit. "That's you treatment finished for today, Swordfish and don't forget your scone.  Single or double cream". Mmmmmmmmm.

Back in the real world the following video, plucked from You Tube captures the working class South Wales spirit, self-parody and also the ability to prick the pompous. Aside from that I think it is bloody hilarious.   Already widely viewed but no apologies from me for those who have already seen it.

********  Well I hope that you caught this video before it was removed by EMI for infringing the copyright of the original song.  I guess that it didn't make JayZ and Alicia Keys look too cool but it just goes to show how little humour these corporations have!! ********

Medical Update

Today was clinic day, so I got to chat to the doctor and my specialist nurse before my radiotherapy treatment.

I say "doctor" but I was lucky enough to see the head of radiotherapy  and therefore ask a lot of unanswered questions about my treatment programme as a whole.  I have taken a shine to the head of radiotherapy as she is quite a "forward" person and is very happy to engage you.  It makes a recipe for a clear and frank exchange.  All of staff are good and the other heads of departments are spot on too, but I find an easiness in getting my point across to this lady without having to choose my words.

My shift from standard trial process to more chemotherapy and radiotherapy means that I am now in another process that I have to learn about.

Here are some relevant facts

My latest blood results are OK, so I still don't need a blood transfusion.  I am pleased about that though would feel if happier if my haemoglobin wasn't just marginally above the requirement.

I am being given a big dose of radiotherapy and so can only go through the process once.  Equally significantly, I will not be reviewed for operation until twelve weeks after the end of radiotherapy and chemotherapy treatment; that takes us into December.  The reason for this is that whereas the delay before surgery after chemotherapy is to allow the body to recover the delay after radiotherapy is to allow the radiotherapy to keep working.

So it is a time for calm, routine and just keep doing the things that I am doing.

On a downside note eating is now becoming difficult.  My ability to eat has deterioriated a lot in the last week or so and I am using fizzy drinks to get food down.  I say this whilst maintaining a fairly normal diet.  I will keep an eye on things but may have to compromise further soon.

All said and down, at the moment I am a "Swordfish" without any real vices.  It must be the first time in adulthood and it is just a little bit frightening.  Unlike Oscar Wilde, I can even resist temptation!

Swordfish and Ospreys - Another Ramble

A few people have asked me "Why the name Swordfish".

The truth is that I closed my eyes, cleared my mind and let the first thing swim in.  The aim was to choose something in a symbolic and archetypal manner rather than a logical manner.

I could explain the choice in many different ways but the validation of picking a good symbol is that it will easily morph its meaning as the circumstances change.

I could wax lyrical about the two elements of the name i.e. the Sword, which is symbolic of the mental faculty and the fish which, amongst other things,  is symbolic of death (change) and resurrection (Christians will identify with that as it is the symbol that early Christianity associated with Jesus).

I could go on forever about this subject but it is irrelevant.  Right now I am interested in the characteristic of the Swordfish that encourages it to dive deeply and quickly when under attack.  Sometimes it even spears its nose into the sea bed.

Last month was akin to that.  Bad news forced me to go deeper and took me down quickly and forcefully.  I have gained from the journey back up where there is time to reconcile events, learn from them and enjoy swimming in calmer waters for the time being.

Now I am not the family's great observer of nature.  That mantle is shared between my father and my sister.

As I have journeyed through this illness I have felt more affinity with simple aspects of nature even if it is just watching the wildlife whilst out in the back garden.  I have even found myself watching a few nature programmes recently.  Nature programmes are something that I will watch if they are on and they are well produced, but I even found myself recording one a few nights ago.

So there I was with Kitten last night watching a programme called "Wild Wales".  Ten years ago I might have been hoping that it was a programme about the underground party scene but here I was watching a programme about Chuffs in Angelsea, different types of moss (which I thought was stretching it a bit far) but then the beautiful osprey.

The osprey is a creature that I have admired since childhood.  Not that I have spent much time thinking about it, but I remember seeing footage of it catching fish in Scotland.  I had always associated this bird with Scotland;  I think that when I saw the original footage many years ago there were six pairs of the birds in Scotland and that efforts were being made to encourage a growth in the population.

Of course the closest I have been to Ospreys recently is watching the eponymous Welsh rugby team on the tele and I always wondered why a team would be named after a bird that isn't native to Wales.

The programme put me straight.  Ospreys started to "settle" (they are migratory) in Wales in around 2004 and have a growing presence.  The filming of the bird for the Wild Wales programme was on the estuary at Port Meirion, which is famous itself as the village in which the original cult 1960's series "The Prisoner" was filmed.  The village is now widely known beyond this particular slice of infamy, but again it has relevance to this blog because of a missed opportunity to go there.

I have thought many times about staying in Port Meirion but my one concrete opportunity to go there was missed, somewhat ironically, when I chose to walk up Cadair Idris instead.  Cadair Idris is the mountain that I have mentioned several times on this blog and on the day in question I chose to venture with Gandalf, Bee and Beard instead of my parents Cymraes, Grumpy my sister Tricky Crow and brother-in-law Dumbledore the four of whom were off to visit the "Prisoner Village".

Anyway back to Wild Wales and the osprey.   The footage of the osprey taught me something new, as all of the previous footage I had seen of the bird hunting was of it swooping in at an angle to the water and hooking the fish out of the water.  I did not know that they mostly hover and then plunge down into the water, a sort of attack form of the Swordfish's defence characteristic.

So what is the point of this ramble through Wild Wales?  Well it is simply that at this time I am digging and digging deeper and I guess that will be reflected in some of my posts over the next period. 

Unlike July though I am descending in attack and not in defence.

Boogle Takes a Trip to the Radiotherapy Unit

I went into the office early yesterday morning to have a number of conversations about current projects and my treatment programme.

I was out of there by 11:45am so that I could make a radiotherapy appointment which was "bang slap" in the middle of the day at 1:00pm.  Fortunately, as we get towards the end of this week my appointments are scheduled closer to where I would like them to be, which is at the end of day.  The first couple of weeks of appointments have to dovetail with the schedule that is already there for existing patients but then your preference can be accommodated, as others' programmes finish.

As I was getting to the hospital by train, Kitten arranged to pick me up and it was great to see not just her but also Boogle's smiling face when I came out of the treatment room.

I haven't said much about what the radiotherapy treatment entails as from a patient's perspective very little appears to happen.

I have mentioned that the radiotherapy suite is a dedicated new suite at the hospital.  The machine that I am treated by is very sophisticated and an its four elements are able to rotate 360 degrees around me, allowing it to deliver the X-Rays from above, below and the sides.  I have just scanned the web for a decent picture of the machine but I can't find one that seems to be as up to date as this impressive piece of machinery.

The bed I lay on is adjustable via handset electronics in three different dimensions allowing the radiographers to get my body positioned exactly where they want it.  The positioning is aided by laser markers and they make painstaking minor physical adjustments (in addition to the bed positioning), before leaving the room and leaving me to lay completely still for around 15-20 minutes whilst they deliver the treatment and produced scans from an adjacent room.

To be honest I find the whole experience quite relaxing and the communicative manner of the personnel removes the impressive but austere feel of the environment. When I came out yesterday, the senior radiographer said goodbye and, seeing my daughter, invited her to come and look at the treatment room.

I feel that this was a great move because it removed the mystique of "daddy's treatment" from young Boogle's mind and, I assume, some of the worry.

She was allowed to use the handset to rotate the "big machine" and this will have given her the feeling of just a little control over the situation.

Later in the day Boogle saw Kitten at the computer looking at this blog and she asked if she could leave a comment.   We try and include the children in the process as much as possible whilst sparing them from things that we believe that it isn't helpful for them to know, so Kitten was happy to help her.

Boogle is nearly three years older than Huffty and her awareness of the situation is much greater.  I hope that little things like yesterday will help her feel more comfortable in what is a difficult environment.

Hope

When I listen to the staff talk at the Marsden now, I hear the word "hope" recurring.

Rather than being on a straight through process they now "hope" that the radiotherapy and chemotherapy will work.

Whilst that is no doubt an accurate assessment of position, I always feel quite comfortable when those "in authority", and seemingly best placed to judge, don't.

It is just in my nature to be more resourcful when I feel more isolated and with the odds stacked against me.

Naturally, I would rather be secure in positive science than in "hope" but hope is not always a bad place to be as it places is the emphasis on the individual to act.

I have discussed the next period of treatment with work and, as ever, have had solid support.  This is much appreciated and now gives me the licence to switch my focus to the healing process whilst being able to continue to contribute, albeit at a reduced level.  In many ways there is not much change here, rather a difference in emphasis but I can feel relaxed and unworried going forward.

So things are very much down to me and isn't that where everyone should always be?

Some Encouraging Movement

The one aspect of my blood tests from last week that I did not know until today is that my "tumour marker" blood counts have shown improvement.

The tumours markers were part of the picture that was used to decide that my operation would not go ahead in July.

At the time the marker called CA19-9 had fallen from an initial 60000+ down to 10,000 at the end of the first three cycles of chemotherapy. However, when the chemotherapy stopped it was at 25,000 three weeks later.  A further two weeks on and it had seemingly stablised at 20,000.

These markers take a couple of days to come through from the blood tests and, as of last Wednesday, it stands at 11,000.

It is important to note that it is not so much the number that is important as the trend.  That indicates why it was seen as a negative thing when it bounced to 25,000 after coming off the chemotherapy in June.  The aim is to get the readings down but, just as importantly, to ensure they do not go back up when treatment finishes.  This will give some indication (though only an indication) that the tumour will not grow back straight away once an operation is performed.

The other indicator is the CEA, which as fallen from 85 to 75 having risen steadily since the initial chemotherapy stopped in June.

Technical and boring but something positive.

The Right Balance

So, I've got through the first few days of chemotherapy and am also a few days into my radiotherapy treatment.

It is time to lift the struggle and get focused on what is really important.

This course of treatment is designed as another throw of dice in getting me into operation and cure and is likely to be the last from that perspective.  The important thing is to do my utmost to make it work.

It is impossible to know exactly what is the best way to approach things, but there has to be a sensible balance.

Radiotherapy everyday rules out some of the potential for commuting to and from work and work will have to take a lighter load anyway.  Working has been useful in giving a focus away from the other issues and it has more often than not still been priority number one in the same way as it is for everyone in a normal situation.  However, that is not sustainable over the next month.  It is still a factor in the mix and discussions over my level are input have already started.

There is no opportunity to create some kind of sterile, restful healing environment.  Try and do that with two young and enthusiastic and happy children who will be returning from South Wales today.  What is important is to create an environment where I can be happy, whilst living a normal life.

It would be good to get out for more walks in the park, strolls by the river and just generally keeping the spirit high whilst also getting a good easy level of exercise.

What I intend to do from a pyschological perspective is to believe that I can still make a big difference to the process.  The cancer will do its own thing in conjunction with the treatment.  I cannot control that, but I can put myself in the best frame of mind and the best condition to create an arena for the treatment to work in and that is exactly what I intend to do.

A Social Week

Despite the madness on the medical front this week Kitten and I have been able to find some time to enjoy ourselves.

On Tuesday, I went out for a bite with Big John.  We have been saying that we will touch base for a while and apart from being Big John starring as himself, he is one of the dads from school and football and husband to 15 - Love (the tennis coach who I mentioned meeting whilst ice-skating a while back).

Kitten got off to the gym as there were no sleeping children to worry about and Big John and I set off for a pizza.  Neither of us were drinking and I took a discount voucher for the meal.  Nevertheless, we elected to leave our handbags and "lippy" at home and indulged in old fashioned conversation rather than banter.  All very strange for two grown men but entertaining.  Big John was at the same school as me though five years younger and I never knew of him whilst I was there but it was interesting comparing to the backgrounds of how we emerged from the place.  Cheers, for a good night out Big John.

It may not seem significant that Kitten and I have enjoyed some time to ourselves this week but it is an oasis within a difficult period both as individuals and in managing our little family.

Aside from our stroll in town on Friday, we went out last night for a quick bite to eat.  On the way there I showed that I have lost none of my magic charm and neither have I lost the immediate ability to negate it.

As we were walking down the street towards the restaurant the sun was hanging low but above the roof-line and straight into our eyes.  Kitten purred that she loved sunny evenings but I countered by saying that I hated the sun so low because I could not see anything.  I paused and said

"But I can see you clearly and you are beautiful". 

Kitten smiled at me and melted a little, so I followed on with

"Perhaps you are all I need to see".

I saw the "Home Run" lights flash in the stadium before adding "I'm doing well aren't I" and was promptly judged to have been caught at the boundary.

Today we even managed to catch up with  "Car Crash" and his long-suffering "Mrs Forgiving".  

Car Cash and I have been friends since we met in a pub when we were eighteen.  He is also a Welsh lad and had been living in England for a couple of years when I met him.  I was very proud to be his best man when he and Mrs Forgiving married some five years later.

Car Crash is named as such simply because he has had no less than twenty two car crashes and yet is still able to get insurance and drive on a public road.  Not only that but he owns a chain of shops and spends his time going up and down our motorways. Perhaps I should put his number plate on here as a gesture of care to anyone who is reading.

All banter aside, we have not had the opportunity to catch up (other than by the occasional snatched telephone conversation), so it was good to go to theirs for lunch and have a chat and a laugh too.

We were due over at Notoplip's and Sushi's this evening but, whilst we are chilling, they are suffering the joys of having two kids to look after including a two year old who is, apparently, in full flight this afternoon. Good luck to them.

Special mention to SandD who have had another tough week.  Our thoughts are with you.

I have spend the last few days getting through the chemotherapy and adjusting to the radiotherapy.  As this treatment is "last chance saloon", I will be picking up the good vibes over the coming weeks and doing my best to get myself out of this unholy mess that I am in.

Being happy and hopeful are the best weapons that I have to offer at this stage of the game.  The rest is in the lap of the gods.