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Sunday, 30 May 2010

Quality Time

One of the key foci for the coming weeks has to be that after the operation I will be "inactive" for quite some time.

There will be no barrelling through like chemotherapy where I am able to function, albeit at a "lower frequency".  The inevitability of this change brings different aspects of my life more sharply into view. 

Perhaps the most significant aspect is the time I spend with my children, both as and individual and as a whole family with Kitten.

Our children understand as much as is reasonable for their age and like all children they will adjust and be resilient.  Regardless of that I have a need to get the most that I can out of them of in the coming weeks and I hope that they have good times with me "before the shit hits the fan".

This weekend I took Huffty out on his own for the Chelsea stadium tour that was postponed from his birthday last weekend.  It is good to do things as a family but when you have only one of the children you do not have to manage the dynamic between them, which is disruptive.

Today, I took Boogle ice-skating and that time is in someways more valuable.  Kicking a ball around the garden is easy to do with your son and it is engaging and interactive, whereas there are arguably less activities in which I can engage my daughter.  Whilst, I used to think nothing of joining in with her bouncing on the trampoline (one of her favoured activities) I am less inclined to at the moment.

As a dad it is easy for the imagination to be less rigourously applied to your family life than it is to be applied to your work and leisure, now is not the time for that.

At the Junction - back to the analysis

With my pre-operation course of chemotherapy due to end on Wednesday morning so my pre-operative stage will begin on the same day with a CT scan.  This article has an analytical slant towards my current postion and I will be writing on my emotional and mental state separately.  I feel that it is worth documenting my thoughts from both perspectives because I have come to a crossroads in my treatment where I will discover how far I have come since initial diagnosis.

The tone of the article is "back to business" because this week is one for me to take seriously but within my stride, regardless of what information comes my way.

Whilst I analysed many of the issues that were central to the diagnostic phase I did not delve deeply into the dynamics of surgery because I thought that it was an issue best left to a more appropriate time. There is only so much information that I think is good to take on both from an emotional and a mental stand point.

If we stick to basics, I was diagnosed as having  a "regional tumour" i.e. it has grown through the oesophageal wall and has infected the local lymph nodes but has not metastasised to other organs in the body (i.e. there is no secondary cancer).  The tumour has been staged as T3, N1, M0 - where T is the size from 0 to 4, N is the nodal infection gauged from N0 to N3 and M indicates the presence of metastasis either M0 or M1.

The following artical describes the classifications more fully (remember that I have the second type of cancer listed "adenocarcinoma"). Oesophageal Cancer Staging .  So my cancer was at an advanced stage when diagnosed though, critically not metastatic.

Spinning to the bottom of the linked page a harsh truth is articulated and that is that, for the statisical sample that was taken, people with my level of cancer have a 20% chance of surviving for more than five years.  I believe that these statistics were derived before the type of treatment I am having was in situ but, but whilst the reading still isn't pretty, I believe it to be closer to a 30% survival rate for 5 or more years.  It should also remember that I am having the "wonder drug" Avastin, so it remains to be seen what impact that has.

There is a another factor, which is termed as metabolic resoponse. Metabolic "responders" have a much higher survival rate than non-responders.  What I don't understand is whether I have been tested in this respect. From what I have read, metabolic response is determined by a PET scan a couple of weeks after the start of chemotherapy, but as my PET scan was performed before chemotherapy I assume that my metabolic response was not measured.  That is something that I will ask.
Now base line statistics are always good to absorb because they tell you the wider picture and let you know where you are "operating from".  However, it would also be a good argument to say that it is unwise to delve into this kind of information and just assume that you are going to be ok.

As I work as analyst my view point is to digest the statistics and information that is out there (and there is plenty of it) and then use it to your advantage.

There are many key factors to survival rates and these include how you respond to the initial phases or treatment, how much of the cancer can be removed at the time of operation, your general health, the quality of your care and your attitude are all good examples of factors that affect the equation.  Given that I have a leading oncologist, surgeon, good general health, I am relatively young and that I am focused on returning to health, I believe that I have a lot going for me in this current predicament.  The fact that blood counts related to the tumour were considered to be moving in my favour significantly is also a positive consideration.

The ability to remove all of the tumour is critical, as the following chart illustrates. R0 represents complete removal




The difference between R0 and R1 quite compelling. It should be recognised that the chart is not exclusively for my stage of cancer.

Regardless of any of the above the CT scan on Wednesday will present a picture of where I am now.  Whilst I was diagnosed as having a stage III tumour we will know how well I have responded to the chemotheraphy and the surgeon will presumably have an idea (though I would imagine not definitive) of how successful surgery will be.

The CT scan will provide some hard facts, so by Friday I expect to be able to reset my expectations in a pragmatic way, whilst retaining my belief that there is much I can do to influence the outcome of my own journey.

My simple take on my situation has always been that if my "inner battery" is beyond recharging then it will fail; nature will dictate that.  If it can be juiced up then I will succeed.

I don't need any motivation because my young family provides as much as I need and reservoir beyond that I can always dip into emotionally.

Saturday, 29 May 2010

Focus on Fitness

After visiting the gym on Tuesday, I decided to go for a run on Thursday lunchtime.  Nothing demanding, just gentle jog for just over a mile; or so I thought.

I ran the gentle incline up my road for about 300 yards and felt quite easy.  Then the shutters came down. Within 30 seconds I was breathless, so I slowed down and realised that I wasn't going anywhere far.  So, I walked for a few yards then jogged very gently back home.

The next day was another day, and I am not one to take defeat lightly, so I took the first train to work and went straight to the gym. 

I am not a fan of early morning training but by 7:30 I was on the treadmill, but this time a very gentle start and built it up.  I only aimed for a mile and by the last quarter of a mile "lap" was running at a good pace.  I did 10 minutes after on the elliptical trainer and was pleased with myself.  It was a good start.

I want to get myself to a good level of fitness within the next 6 or 7 week, but I realise that it won't come easily and I will have to be crafty.  I have started finding "little pockets" to do exercise like jogging when I go to the shop, so that I am taking small opportunities to build a bigger picture.

I am also still doing the Chi Kung but I am increasing the time.  You may be surprised to know that standing still can be quite demanding.  The slight bending of the legs creates a dynamic tension which build over time.  It is my version of "morning yoga", healthy for the mind and body and insistent on creating an aura of relaxation

Thursday, 27 May 2010

Taking Care of the Children

Yesterday we managed to catch the last hour of the local theme park after the children had finished school.  That is the benefit of having annual passes.

Doing it this way we were able to more or less "walk onto" rides and have multiple goes.  Huffty was especially pleased because he was adjudged to have just reached the required 1.2 metres to go on a very good rollercoaster.  Boogle has been going on it since she was just turned 5, because she is tall for age.  Anyway, I had to side on it twice on the trot and then three times on the spin (literally).

The point is that life is pretty normal and that is reflected by my coming work agenda looking pretty hectic.

This afternoon also revolved around the kids as we took them to see the child psychologist that Kitten and I have visited twice before at the Royal Marsden.

I feel that everything is operating well in the family.  Sure it is sometimes difficult and there are occasional flashpoints but we talk things through and keep learning and improving and are doing fine.

So why go?  Simply because we feel that we are getting benefit from the visits.  That can be said of today where the children were able to say how they feel to a sympathetic but impartial ear, whilst still being in a family situation. 

We have our next appointment scheduled for the 24th of June, so this is not an intrusive exercise and, for what it is worth, the psychologist said that she is very impressed with how we are doing.

Wednesday, 26 May 2010

What the "Fox" that about?

Entering the world of chemotherapy was unchartered territory and I decided to tackle it on a day by day basis.  The bedroom was spruced up with much good will from my friends and it has proved a good place for me to work from home in peace and quiet.  Fortunately it has not been called on much for enforced rest.  I guess that comes into place post operation.

No matter how much you read, or how much anecdotal input you have, the effects of chemotherapy are, at some level, unique to the individual and require an individual approach.

I gave myself a concrete structure to work in, broken down into day components and used that as a framework to relax into.

It has been of benefit in easing me through the phase.  The next cycles to commence around the end of September may be a completely different challenge.

The Poem is called "The Magus" or "The Magician"

The cunning fox knows not rules
Guilt is food only for fools
Do morals feed its hunger?
The wily fox must scavenge and plunder
Walking the tightrope everyday
The sleight of hand is its natural way

Mr Fox is a better narrator than me




The concept of the poem is simple and can be encapuslated in the phrase "Needs must when the devil rides".  The fox is opportunist because it does what it has to in order to get by.  It is mercurial and "fleet of foot" in its thinking, taking advantage of every opportunity that comes its way with its practised craft. It does so without discerning right from wrong; without the baggage of conscience.

That's a magical way and it's living a day at a time, a simple way to approach unchartered waters

Yesterday

"All my troubles seemed so far away"...da...da...da..

Yesterday, was a good day for me because I did get down to the gym for the first time since I began treatment.  Since treatment started I have been ice-skating a couple of times but I haven't had any regular exercise structure.

My trip to the gym will be the start of plenty of exercise between now and the operation and I came through it comfortably.  I only did 15 minutes aerobic exercise (on the elliptical trainer) and at levels that I would consider to be "warm up", but it was enough to test me.  I did a little weights too.

The main benefit was pyschological.

The other significant part of the day was the meeting the ex-MD for drinks.  It was good to catch up and it was also good to spend the evening in the pub.

Apart from the fact that we all had an enjoyable evening what is worth documenting is that when someone hasn't seen you for a while and they know you have cancer it is often the case that they expect you to look ravaged by the disease.  In my case that simply isn't so.  I say this before the trials and tribulations of the op.

I lost weight in the autumn / winter in a controlled fashion and then put on some in an advised (but uncontrolled fashion), so my shape isn't how I like it, but I look healthy but just with a damned short hair cut.  My eyes and demeanour are clear and have probably benefited from my near abstinence from alchohol.

Given that I had a two  of heavy nights out in December and a few glasses of wine over Christmas, I haven't drank regularly since I started training at the beginning of last September.  This year my entire consumption of alcohol is 3 glasses of wine and 2 bottles of beer and that despite not being diagnosed until February.  The point being that it won't have done my system any harm being away from it.

I was asked whether it was difficult to sit in the pub whilst not drinking but, I have detoxed before and have good discipline.  In 1999 I did a 3 month detox without any alcohol but also including many systematic dietary changes, in 2000I did it again and in 2000 I did six months, so I have no difficulty in applying myself.  Once I decide to do something I generally see it through.

In the current situation there is no "alcohol" ban either by me or even  suggested by the hospital, I just think it makes sense to let my liver and kidneys get on with what they should be doing, which is processing the chemotherapy drugs.  If someone asked me to have a single drink to celebrate something then I would join in, but I can't see myself drinking a session either pre or post op.

Whilst it has not been suggest that I have arrived at this place because of booze or bad habits  I think that I have done enough of that in my life and will have other priorities when I come through this.

On the other hand, did someone mention a party if and when I get the all clear :-)

Tuesday, 25 May 2010

Gym and Tonic

Last week I removed the temporary suspension of my gym membership and will be paying my first visit today.

Having lapsed a little on the Chi Kung I am also back doing that regularly and the idea is to get fit and "centered" before taking on the surgery and the ensuing lay up.

Talking of the Chi Kung, I was on my way out into the back garden today when I saw a squirrel on the fence by the back door.  If you recall my Close Encounters of the Squirrel Kind you will understand that I had a flashback at this point.  At this exact moment I felt something furry pass over my foot.  It was just the cat but the timing was immaculate and made me jump out of my skin.

The back garden was a hive of activity and because I am just standing still it invites nature to be closer. Today it was a wood pigeon perched not far from me and there also seems to be resident starling in the garden. Stalins also have a distinctive call.

Anyway, Kitten joined a gym last week and yesterday was her first visit.  She seems to have an enthusiasm for it, so we will both be regulars  She will be training at a gym close to home whereas  I will be training in London when I am in the office.

Speaking of the office, there are drinks with our ex Managing Director this evening so I will be popping out to see him.  He has just spent his second entire season skiing, so I am sure that he won't be short of a tale or two.

It will be good to be out of the house, in what is a local and homely pub.

Monday, 24 May 2010

Nearly There with the Chemotherapy

It dawned on me today that there are only eight days left of the final chemotherapy cycle before surgery.

At this point it is always a doddle, but there is still need for care to be taken.  One of the good things is that I have finished the five blood boosting injections from days 8 to 12. This is an under the skin injection (subcutaneous) rather than intravenous but it is something that you have to get on with rather than enjoy.

I am restaged with a CT scan the day after the chemotherapy finishes and that is when I will find out how well the drugs have worked.

I was chatting it over with Kitten tonight and although I want the tumour to have shrunk the most important thing is that everything is still operable.

What nobody knows is what the rate of the tumour's growth was before treatment started, so it is unknown how much effort has been expended in reversing the situation.

Physically, there was a big improvement in my ability to swallow food after a few days of the first administration of chemotherapy but I cannot say that there has been an noticeable improvement from that point.

I am assuming that I won't know what the results of the CT scan are until two days after it is performed, as that is when  I have an appointment scheduled to meet the surgeon.

Both Kitten and I are relaxed about the outcome and we are looking forward to our week's break in the Isle of Wight, whch is less than three weeks away.

On Thursday we visit the Marsden's child psychologist with the children (they haven't been with us on our two previous visits) and that should wrap things up.  The kids are both back to their usual selves.

Huffty, is much more grown up than the beginning of the year as this has concided with him growing into his personality and Boogle is back to her feisty self but seems much more comfortable with my illness.

We undertook the visits to the psychologist simply because they were available and we wanted to do the best we could for the kids.  They have been helpful and we have managed well as a family so far. The fact that Kitten had an operation on her neck last year will be helpful in laying the path for my operation as the situation will not be unique from the childrens' persepective.

Because my hair is shaved really tightly, the scar from my haemangioma operation is clearly visible.  It is interesting that the kids have never commented on the scar before, given that even with hair covering the top part, the lower part of the scar runs below my ear along my neck in-line with my jaw. 

Boogle noticed the scar from the top of my head to my ear, whilst we were sitting at the dinner table a few days ago, but she still did not connect that it runs down below the ear.

It is funny what kids see.

Sunday, 23 May 2010

Mad Canadian and the Tinnitus

On Friday I paid another visit to the Canadian osteopath.  I refer to him as the Mad Canadian not because of any measure of his behaviour but for his perspective on things both exoteric and esoteric.  The fact that he queried the tag gave it the necessary "branding affirmation".

Before conisdering the merits of alternative approaches to a mainstream problem, or otherwise, it is worth acknowledging that I have been discussing the tinnitus with the Marsden and there is nothing that they can do about it.  Their only weapon is in the selection of chemotherapy drugs in order to try and avoid its escalation.

I have had one prior visit to the osteopath for this purpose (my initial visit was for a back problem), which was during the last cycle of chemotherapy.  I had limited expectations for treatment simply because the problem has been drug induced rather than of a physical root.  The solitary visit did not remove the problem but there was a 50% reduction within a day.

Anyone who has suffered with tinnitus will know that it can be an uncomfortable experience so any improvement is welcome and a 50% improvement is significant.

My current visit has yielded similar results  and I know have until the next cycle of chemotherapy starts to look for further improvements.  That cycle will not start for 17-18 weeks, given that the current cycle has one and a half weeks to run the 6 weeks until the operation and 10 weeks recovery.

Treatment of the tinnitus is via cranial osteopathy but I always receive some standard osteopathy on my visits, which is a boon given the back problems I suffered a few weeks ago.  I am now much more active than then so my back is in much better fettle generally.

The added benefit of my visits to the osteopath is that he has a wide range of experience of different treatment methods and there is substantial common ground outside the medical sphere.  He is able to discuss the situation from a perspective close to mine.  This offers a welcome and useful respite from the approach that I have adopted with my mainstream care, which is to educate and inform myself, so that I can have a decent conversation from their caring perspective. So, the visits have been useful in me consolidating my approach to the ever changing dynamics of situation.  The overall well-being is something that is helpful in maintaining an optimistic outlook.

Whilst there is a clear cut route for me through the chemotherapy and operation each day is different and should be treated as such.  My last two visits have coincided with the end of the first week of the cycle of treatment and have been of benefit in helping me out of the difficult period of the first seven days.

The Huffty's Birthday

So, my son is six today.  Thanks to everyone for his lovely presents and I hope that everyone who came to his football party yesterday had a great time.  The weather gods certainly smiled upon us with a glorious day and after the party we continued the jolly mood in Notoplip's and Sushi's back garden.

Today, he is in good spirits but it is unfortunate that he is not well.  He now has a sickness bug and has been ill a couple of times.  So, we have had to cancel his Chelsea stadium morning and we are trying to rearange it for next weekend.

From a selfish viewpoint it seems that I am being pinned in by the possibility of picking up an infection. First Boogle was ill mid-week and now Huffty.

All in all it has been an eventful morning (with my visit to A&E) but he is still pleased because we have got him a new high sleeping bed.

I guess that there is no excuse for me not to - I am going to have to join Kitten upstairs and help with its assembly. I hate DIY!!!!!!

My Ring and the KY Jelly

Firstly, my apologies for smutty amongst you (eh, Lance Corporal).  The story does not live up to the headline.

It seems that yesterday whilst at Huffty's Football birthday party I must have been bitten my an insect on my wedding ring finger.  Bites from insects don't normally trouble me, but last night I noticed that the finger was swollen.

Kitten suggested that I remove the ring before retiring but, foolishly I ignored her advice.  This morning the finger had swollen and soap and water proved inadequate for the task.

My concerns were two-fold.  Firstly, I didn't want the ring to cause further swelling but my main concern was the reacion of my finger as it was much worse than I have previously experienced.

I rang the Marsden and they advised A&E, so of I went.

Casualty was the quietest I have ever seen (8:30 am Sunday morning) but it seems that I queue jumped anyway - there have to be some perks to being ill! 

The nurse was poised and ready to cut the ring off, but at the last moment she suggested that we try some KY Jelly first.  It was quite a wrestle for a couple of minutes but I managed to prize my ring off in one piece, which I was pleased about from a symbolic viewpoint.

So ice and anti-histamine for me and I will give the my research nurse a ring tomorrow to see my team think that the issue can be closed.  I have come this far without getting any major problems during chemotherapy,  so I don't want to fall at the last hurdle before operation on something seemingly so innocuous.

Thursday, 20 May 2010

An Eventful Weekend to Come

As I haven't got a collective term for Lance Corporal's clan, I feel that they should be named "The En Suites".  My thanks again to them for putting me up at short notice and my apologies to Aladdin for "regaling" him with my tales of times past.

I went into the office from my overnight base and will be in again tomorrow so, having been in on Tuesday as well, that is probably the most I have commuted in a single week since starting treatment.  It might seem pragmatic to work from home tomorrow but I am killing two birds with one stone and visiting the Canadian osteopath for a bit of work on the tinnitus.  It has eased a little over the last couple of days, but it would be good to make it as easy as possible.

The main event this weekend is "The Huffty's" sixth birthday.  It feels quite strange that my youngest will be six.  He has a football party organised for Saturday and a tour of Chelsea's Stadium on his birthday on Sunday (not that I want to go myself of course!).

Everybody is proud of their kids and I am no exception but I can take extra pleasure from the fact that both Huffty's and Boogle's birthday will happen before my operation takes place.  Boogle's birthday is on 7th July, so that will appear on the horizon very quickly

Wednesday, 19 May 2010

Exit Stage Left

So there we go, Boogle has a stomach bug (assumed) so dad departs the house and now is firmly esconsed at chez Lance Corporal's.

It seems like an odd thing to do but coughs and colds can be dealt with, whilst I wouldn't fancy a stomach upset and the potential for it to hammer my immune system down with the prospect of further issues.

Thanks to Lance Corporal and her family for providing me lodgings at short notice and I hope that Boogle gets better soon.  I still haven't seen her properly since last Thursday.

Meanwhile, Virgin Broadband got installed today so now I have the internet on my tele too.  I'm so "tech'd  out" that, even though my mobile is due for renewal I can't be bothered.  There are other pleasures though.....

Generally, I have been staying away from spicy food and take aways but I fancied a spicy Chinese last night and demolished it.  I am not sure that I looked up from my plate whilst eating, but I'm am not sure that Kiiten did either.  I am still in one piece so, happy dayz.

Not quite the same as beer, curry and Jack Daniels but still some good respite

Raising the Spirits

Not just for me, but the turn in the weather must be a lift for everyone.

Having had mixed weather in Wales on the weekend I travelled back with my mother on Monday and it has improved tremendously.

It was good to get out from underneath everyone's feet yesterday and get back into the office.  The suggestion that the commute into London would be enjoyable might seem to be a bit of an oxymoron but with the sunshining and people feeling jolly it can be good just to get a change of environment.

The change in weather coincides with the end of the difficult period of the chemotherapy so it is a real boost and adds to the appreciation of all the good things there are.

On a slightly challenging note,  my daughter is having to be picked up from her school camp due to sickness.  This is not good on more than one front.  I haven't seen her since last Thursday and now I am going to have to leave the house so that I do not risk picking up infection.  I hope that she makes a quick recovery not only because I want her to be better, but because I miss her.

Whilst I was "in the smoke" yesterday I got my gym membership back on line.  I anticipate being in the office more over the coming weeks, especially after the cycle of chemo has finished and the immune system is getting back to normal.  The objective will be to get myself as a fit as possible before the operation, without overstreching myself.  There is a balance to be struck between looking after the immune system and preparing for a physical lay up and, as I get closer to the operation, the balance shifts further towards the respiritory.

Similar Patterns

The same patterns have prevailed during the early stages of the third cycle of chemotherapy.

I can't say that I have suffered in any way.  In many ways the last week has been no worse than having virus or working to a tough deadline.  It has also been less debilatating than the former.

What can be difficult is that in these first few days there is a tendency to be insular and to just drag oneself through it. In other words, I have been quite grumpy and intolerant.

It's difficult to put a finger on any solitary reason but as mitigaton it is fair to say that there have been a lot of drugs going in there including steriods.  The first few days it is a question of getting food in to the system.  I have been able to eat but food is not enjoyable. One of the things I disliked was water (which is none too helpful) and, whilst I haven't suffered too badly with smells, the smell of a new clothes' conditioner we have been using has been both rancid and ubiquitous.

All in all the first week of  chemotherapy has repeatedly been something that has been an uncomfortable but not an outright unpleasant experience.  Days six and seven usually see a surge of energy, but at this stage it is not held down well.  This makes me feel a little "hyper" and it was on day seven of the second cycle that I lost my temper (in a verbal sense).  Being aware of those patterns helps but it doesn't stop the same issues arising albeit in diluted form.  With this in mind I feel honestly that the first week of chemotherapy is probably worse for those that have to put up with me.

It is very difficult not to be moody because it feels like you are on a boat that, whilst not under any real duress, is pitching an rolling all over the place.  Your job is to focus solely on what you have to do and you don't really have the resources to consider others roles.  That sounds selfish and it is.

Barring the risk of infection and the now omnipresent and escalating tinnitus that seems to be it for the pre-operative phases of chemotherapy.  Of course, there are plenty more tablets to take in this twenty one day cycle and I also begin five days of filgrastim blood boosing injections today.  However, caution and due care can now supersede irritability and muddling through.

Hopefully, I won't be waking up at 4am tomorrow morning either.  Ah well, back to bed.

Monday, 17 May 2010

A Useful Weekend

Going away for the weekend isn't necessarily the best thing when your circumstance determines that routine plays a pivotal part.  I have had some interrupted sleep whilst I have been in South Wales but, conversely, I have been able to flow better with the rhythm and doze when I want to.  The normal distractions of family life (i.e. the children) have not dictated what I am doing.

Perhaps, more importantly, it gives you the opportunity to think about things from the outside and consider the pathway forward.  That has certainly been  a helpful aspect.

So thanks to my parents for putting up with a somewhat grumpy me this weekend (that's all part of the shifting sleep patterns!).  It has been good to catch up with them and a good few members of the family (including Magic Coat, The Serious Barman, Mr and Mrs Cake and the Yorkshire Enclave) some I have had to miss due to coughs and colds etc.

Yesterday we went to Cardiff Bay and took a walk around to the barrage at Penarth.  It's only about a two and a half mile round trip but it knackered me out.

Definitely time to step the exercise up now on the way to "operation city".  Slowly, slowly catch the monkey though.

I am also looking forward to the air of normality that should pervade in the coming weeks as I move out of chemotherapy mode.

Turning my attention back to the homeward journey the home will seem a little empty when I get back as "Boogle" will have gone off to school camp for a couple of days.

The children have not been short of entertainment though as Sushi and Kitten took theirs and ours to Legoland yesterday, whilst I was here and Notoplip was "enduring" his final mission on the lads weekend away.  The coach journey back from there will be one of silence and some deranged looking faces.  There are at least some bonuses to watching from the outside.

Saturday, 15 May 2010

A Special Day

Today, of course, was FA Cup Final day. 

Now the fact that Chelsea did the double is of great significance and had added value as I watched it with my Yorkshire Uncle in his Welsh house (whilst he is also a Manchester United supporter).  There is a certain irony in me mentioning that being a Chelsea supporting London based Welshman. The "Huffty" was also very excited when Kitten put him on the phone for me to talk to.

But it is not that I am referring to.

This weekend is also Notoplip's football club's end of season tour, which I go on annually (when fit and able to demonstrate my full range of stretching exercises).  It is scheduled to coincide with the FA Cup final and is a jolly old knees up requiring extreme stamina and a three day suspension of sanity.  Many good times have been had despite me not being a member of the Football Club and not having kicked a football in earnest (other than with Huffty) since I left junior school at the age of 10.

But it is not that I am referring to.

It also "The Eccentric Golfer's" birthday and I hope that he has had a fine one.

But it is not that I am referring to.

It is the anniversary of my first date with Kitten.

The 15th of May 1999 was the start of our journey.  Like any relationship it has been full of ups and downs with many joyous times and also more difficult times.  We have been growing together for eleven years and, like anything, the value of our relationship can be be determined by its silent quality or, expressed differently, its underlying and natural strength (the essence of that which flows through it with need, demand or question).  In this case...

Love.

Friday, 14 May 2010

Weighty Issues and Food for Chemo

In the months leading up to Christmas I lost a lot of weight but this was deliberate weight loss and took a considerable amount of effort in the gym.

Of course, when I started visiting the hospital I was asked about weight loss and the issue was then clouded somewhat.

When you lose a lot of weight it does keep falling even after you stop training and when I hit my target of 11st 2lb I didn't worry at all when I went to about 10st 12lb.  However, after diagnosis I was told to put on weight because of weight loss surrounding the forth coming operation.  I was worried after initial gains that my weight went back to 11st but I shouldn't have been bothered. 

I have had a good appetite throughout chemotherapy.  Generally only the first few days have been challenging whilst in this cycle it has been easy so far.  My weight is currently 11st 8 pounds and, if anything, I am getting podgy again.  At this point it is worth mentioning that I feel one of the reasons I have dealt with the chemo qute well is because I feel that if you are able to eat well on it then it "masks" the feeling of the chemo.  I base this on the simple fact that on days when I haven't eaten as well (to do with schedule rather that feeling) the chemo hits back; even late in the cycle.  A few people I have talked to share this same experience but, of course, it doesn't work for everyone as some find it really difficult to sustain an appetite.

The hospital tell you to put on weight but there is good weight and bad weight.  When I have the operation there won't be much opportunity for me to exercise until the physical is overcome.  When I lose weight it won't be from where I want it (around the gut) it will be from the shoulders arms and back.  So I risk looking like someone from the Anthill mob(reference to my oesophagus being chopped apart and tied back together) combined with a portly stomach and skinny arms.

So after I have felt my way into this cycle I intend to increase the exercise, lose a bit around the belly and build the upper body up a little.  Nothing too heavy but perhaps some "gentle" weights and and aerobic combined.

This is a continuation of my strategy of managing each cycle of the illness as I see fit whilst taking guidance from the professionals around me and using or dismissing it (with due consideration) as I see fit based upon my experience.

Thursday, 13 May 2010

It's looking Rosy in the garden

I've managed to combine day two of the chemotherapy cycle with a train journey to Wales.  Not the most arduous thing under normal circumstances but, of course, I like to make things a little more difficult for myself.

I decided to leave 15 minutes rather than my normal 10 to get to the train station as I was carrying a laptop and a bag (up a hill), but as usual it was 10.  Not easy at this stage of chemotherapy especially when you end up running for the train.

Yes I have an incredible capacity to be stupid.

Anyway, the rest of the journey was smooth and I am here, relaxed although naturally I am missing my little family.

The future from here looks like a bright landscape with the promise of 6 weeks without chemotherapy after this cycle finishes and there is also a holiday on the horizon.

We can't go far this year for obvious reasons but Notoplip, Sushi, Kitten, the children and I will be going to the Isle of Wight for the week.  We have found a lovely property, set in two acres with private ownership of part of the beach so we will not be short of space.  There are plenty of walks to be had and I might have to content with more than squirrels when practising Chi Kung in the mornings (eh, Big G?).

Barring any mishaps over the next period the next major event is the restaging of my tumour on second of June.  When we started the size of the tumour was gauged as T3 on a scale of T0 to T4, so I hope for some shrinkage.  Regardless of the result the only thing that is of significance is that the tumour is still operable any improvement from that position is a bonus

Wednesday, 12 May 2010

Kitten's First Video Update

I thought it more than about time that I did a video posting.

Swordfish is always hogging all the limelight.


Off to see the "Taffiosi"

No problems with the chemotherapy.  The white blood cells had shot up and the change from Cisplatin to Carboplatin made the process much shorter. I was back by 3:30pm despite not starting in earnest until gone 11:00am.

I have not been to visit my family in South Wales since The Wales v France match at the beginning of March and that was a flying visit with Notoplip.

There are a number of members of the family that I consider myself close to and it will be good to catch up with them if they are around at short notice.

I have been using Skype video to keep in contact with my parents and it has also been a lovely way for them to see their grandchildren more regularly.  The same can be said for Kitten's parents.

Aside from visiting there is also the motive that I will be able to get plenty of rest for a few days.  I will miss Kitten, Huffy and Boogle, but the first few days of chemo is a little tricky so the peace and quiet that stepping outside my own little family will afford me will be a good investment.

The journey down may prove interesting but should be "do-able".

The only thing that remains is to train Kitten up in "The Way of the Blue-Ray" before I go.

I can see that sign on the Severn Bridge right now.  To you it may say "Welcome to Wales" or "Croeso i Gymru" but to me it says "Home Sweet Home".

Tuesday, 11 May 2010

Pre-chemo Encouragement

I went for my pre-chemotherapy checks today.  First the ambiguous news then the good news.

One of the chemotherapy drugs is to be switched.  This is the cisplatin, which is being switched for carboplatin.

The cisplatin has been responsible for me having tinnitus which has been worse on the second chemotherapy cycle than it has been on the first.  It was explained to me that this is a pattern with cisplatin and the third cycle can lead to a drop off a cliff scenario rather than further degradation. There could be permanent and severe damage if the cisplatin is continued.  I took this on board as, before this information, I was keen to keep the cisplatin and change it after the operation.

In order to receive the carboplatin my neutrophil blood cells (a bone marrow produced white blood cell count) must be 1.5 and it is currently just shy of this mark at 1.45.  However my counts are up from last week and I may well make the target when I am retested tomorrow morning. In the event that I don't there will be a conversation with the professor to see whether I can go ahead regardless.

Now for the good news.  The doctor I saw today was the same chap as I saw last week when I went to the Marsden about my cough.  He showed me a couple of blood indicators today that showed the treatment is having a major impact on the tumour.  These tumour markers CEA and CA 19-9 were described to me as "tumbling" and the statistics show that between 19th of February and 14th April they have fallen about 70%.

What that means in real terms we shall find out when I am restaged with a CT scan on the 2nd of June.

My appointments post chemotherapy and pre-operation are beginning to roll in.  I will be pleased to see the surgeon on the 4th of June.  On our first meeting in February I elected to bypass a discussion on the detail of the operation as I felt it was more information that I needed at the time; there was a lot to take on at that point.  Now it is time to get down to the reality.

Monday, 10 May 2010

Thought for the day

"A surgeon's knife is a sharp tool but it is also a blunt instrument".

Sunday, 9 May 2010

Relaxing Weekend

Well it has been a relaxing weeked on the downward stroke to the next bout of chemo on Wednesday.

Friday saw the introduction of SKY HD multi-room to the Swordfish family to complement the blue ray home cinema and LED TV.  Even I am gadgeted out now.  I sort of won Kitten over to my entertainment infrastructure master plan when viewing Harry Potter in Surround Sound with the kids, though she finds it hard to admit.  iPod hooked in too and tele is internet capable so "Teach" will be drooling!

I popped out on Friday night to Notoplip's football club end of season do.  I usually go away for the end of season bash which takes place on FA Cup weekend (next weekend).  It's always a riotous affair but I will have to give it a skip this year.  The boys have had a good season.

Huffty moved up an age range group at football and was pleased with himself.  He's football crazy and we took him to a football trading cards swap session on Saturday, whilst Boogle went to Werthers17's daughter's birthday party.

So all normal and fun stuff.  The best was saved until last though.  After spending a couple of hours getting the video toolbar working at the top of the page (I got the feeling that Kitten would have preferred to see me do something more useful), we went to Lance Corporal and Big Boss's house for Sunday Roast and to watch Chelsea stamp all over Manchester United's dreams of a 4th consecutive Premiership title.  Well done the blues.

Chelsea's victory only just surpassed Lance Corporal's roasties (which were superb) and I demonstrated amply that chemotherapy need not dampen one's appetite; sorry there were no leftover roasties for you Big Boss.

It was good to catch up and the kids had fun too with their daughter who is the same age as Boogle.

Saturday, 8 May 2010

At the Peak - Time to Descend

In the analogy of the beast climbing up the mountain track, I am now at the second peak and it is time to descend and drink from the lake again (which gives me an excuse to use that nice German man's photo again).



I am of course referring to my third cycle of chemotherapy, which is scheduled to begin on Wednesday.

The image references the analogy as descending from the current peak (end of the second cycle) down to the lake to drink before continuing up the path to the next peak.

The beginning of the climb is always gruelling but then a rhythm sets in which masks the discomfort.  Right now, I am in a good place with only mild tinnitus and a slightly irritating cough.  I am in good shape and certainly better than Kitten who has a bad back to add to her list of ailments.

This week I have been a little apprehensive about the next cycle but now I feel good about it again.  It is the last cycle before the operation and my desire to get the best out of it overrides the fear of being uncomfortable again.

I expect this to be the hardest mountain to climb but the reality for me so far is that the treatment has not really been that difficult.  In terms of physical discomfort I would not say that I have suffered at any point in the process.  The chemotherapy does not hold any fears for me whereas the thought of the operation does.

In the last week thoughts of the operation have started to drift in.  That is what lays beyond the third peak and the dragon (tumour) must be slain.  Hopefully, he will will be sufficiently weakened by the four wizards (Bevacizumab, Cisplatin, Epirubcin and Capecitabine). Hopefully the fifth wizard on the journey will have done its bit too.  I refer of course to the wizard that everyone has at their disposal; their mind.

Outside the physical realm the mind is the most important tool that you have at your disposal and all I need for motivation is to look at my children and my family.  The overwhelming support that I have recieved from everyone has been a fantastic aid too.

At every step of the way it has been pointed out to me that I am very young to have this particular cancer and that includes the reaction of the top man oncologist upon enquiry from Mr Thatcher.  When Mr Thatcher asked about me whilst on a recent check up of his own the Professor shook his head and said "he is very young".

Being "very young" it is a "bit inconvenient" to be caught up in this malaise but it is also my best weapon in the process of healing which is absorbing the chemotherapy and in physical recovery from the operation.

I try and look only as far as the next obstacle but when the dragon is slain I think I will take a walk up the mountain that is Cadair Idris stand at the peak and then go for a pint afterwards.  If anyone fancies making the trek with me then you have plenty of time to let me know.

Hopefully the sun will shine on that particular day.

Friday, 7 May 2010

An Internet First - and Humility part II

There's a possible internet first at the foot of this message (a poetry recital by a lion), but first....

Earlier this week I waffled on about Humility and talked about it generally being assumed as being a manner that an individual conveys as opposed to as a feeling that one holds, which is how I see it.

Whilst I used the analogy of the sun and the lion being both arrogant and humble at the same time implicit in this is that humility involves the indvidual's acceptane of their own nature.

You wouldn't expect a lion to behave like a shrew or a meerkat to act like a cobra, so being humble doesn't necessarily imply being "quiet and unassuming", it means acceptane of your role and your current reality.

Acceptance of your nature is important but I oftentthink of the current reality as "the cards that you are holding in your hand at the moment".  They are the magic you have at your disposal whether Aces and court cards or fours and fives.

The poem I published about "Lazy Leonine Ways" was  in written form, but I thought a poem about leonine behaviour would be voiced better by a lion. So, here is an internet first

Thursday, 6 May 2010

Back and Forth

I mentioned yesterday that after a trip to the doctor's I called the Marsden to keep them in the loop.  They wanted to see me so my day was spent going back and forth.  Once for blood tests, back later to see the doctor, back for a prescription.

The blood levels were fine, which was the main reason for the check i.e. so that I don't delay my next tranche of chemotherapy.

The doctor agreed with my GP that my chest is clear, but elected to put me on antibiotics for seven days (as usual the Marsden leave nothing to chance). He described the Ciprofloxacin as having a "Domestos effect" (you know the slogan by now).  The only problem I have is a cough that is keeping me (and Kitten) awake at night.  There's no temperature and no loss of energy but the problem with chemotherapy is that something you would normally shake off easily just hangs around.

So, as usual with the Marsden, they leave nothing to chance.

Before I go to these appointments I draft a letter to the doctor I am seeing describing the issues and the positives that I have experienced since the last visit.  It might seem a bit anal, but it focuses me so that I get the best out of their time. Also, because there is gap between having the blood tests and and meeting the doctor the information allows them to get a clear picture before we start talking.

This where the blog comes in handy for me. All the major issues are there in print and I can quickly build a picture of where I have come from. It is easy to forget what happened when so the blog acts as a good reference point for me as well as being a mechanism to reconcile my thoughts and feelings.

If it is ever assumed that I take my position lightly then perhaps it is clearer that I don't.  I try and keep life as normal as possible and focus hard on the time I have with the professionals. I keep myself informed so that I can talk in their language. During the period of diagnosis I read up on the subject as I went through the process and that knowledge has proved to be very helpful. I have had to add little to that base of knowledge and have been able to relax and just get on with it. 

Today the conversation was very informal.  It was refereshing for me that the doctor made a point of saying thatt he was impressed with my approach and that he thought I was the right material to come through with flying colours.  That sort of thing is confidence boosting because those sort of things are not normally vocalised.

The conversation also produced a little nugget regarding the forthcoming operation.  I expressed my fear that the tumour, being long,  might not shrink lengthwise leaving the operation a tricky one.  His view was different. Whist he agreed that a long tumour means that more of the oesophagus might be taken out he voiced the opinion that short and stubby tumours in the area are more likely to spread across and make it difficult to find  a "clean" approach to the surgery.

Meanwhile back at chez Kitten and Swordfish, Kitten is still unwell and still harbouring a bit of a temperature.  An easy weekend should help sort her out, so will have to make sure that the diary stays light

Dr Swordfish is in the house, but has not been as helpful as he might have been due to the urgent and necessary construction of the surround sound system for front room. Sky HD arrives tomorrow and then, finally, we will be set up for the World Cup finals and my post operative slumber.

Did someone say that there was an election going on?  It will be interesting to see whether the Lib Dems convert good poll showings into seats rather than gallant seconds.  Whoever, gets the nod I have the feeling that they might wish they hadn't.  Europe is collapsing around our ears, Greece, Portugal, Spain.  Italy next?

Wednesday, 5 May 2010

Back to the Mundane

At the end of last week I developed a tickly throat and a slight chest cough.

Unfortunately, I seem to have passed it on to Kitten and she is now suffering with a chest infection.

Dr. Swordfish's thermometer gives her a reading 37.9 celsius, so nurse Kitten is now under orders to rest and she had to take the day off and go to the Doctor's.

Although my condition is mild by comparison I also paid a visit to the doctor and phoned the Marsden to keep them informed of both the current situation and my on-going, though much reduced, tinnitus.  The doctor was happy that my situation was ok and I relayed this to the Marsden but they called me back to say that they would like me to go in for a check up.

So, it's off to the medical day unit again tomorrow for an 11 am blood test and check up.

I am only one week away from my final cycle of chemotherapy before the operation and I hope that it will commence on time and with me in good health.  If I said that I was looking forward to it then I would be telling porkies as I expect it to be a little more gruelling than what I have encountered thus far.

Far more important though is the fact that it is the last opportunity for my body to continue the healing process before being subjected to the surgeon's knife.

"Shrink, you naughty little tumour. Shrink".

Tuesday, 4 May 2010

Humility

An elder friend of mine once said "Swordfish there is nothing that you can teach me".

As he is well travelled and and experienced man, it took me a while to find an answer.  Now, I have often heard it said about me (and from a young age) that I "have an answer for everything", so I do not like to disappoint.  My answer on this occasion was

"Humility".

Humility is a funny thing because most seem to understand it as a manner that an individual conveys.  I have never subscribed to that viewpoint and believe it to be a feeling that one holds.

If an individual does not feel humility then life is adept in bringing it forth by the bucket load.

Anyone who has been seriously ill, or even who has thought that they might be seriously ill can tell you that Mr Humility comes to knock on your door very quickly.  He brings with him a freshly baked pie and a big spoon with which to eat it and strides past you to your table as soon as you open the door.

"It's time to eat", proclaims Mr Humility and eat, you do.  Why, because it is nourishing and healthy and also because it is a fait accomplit.

It is difficult not to be humbled by your dependency on others and upon good fortune but the point about feeling humble is that it awakens you once more to what is real and important.

LED televisions and Blu-Ray Home Cinema systems clearly are important whereas family and friends, errr....well, yes, they are important too.

Joking aside, it is my opinion that the most important things that you have are bonds.  Not the ones in your financial portfolio but the emotional, mental and physical bonds that you have.  Hopefully these are primarily with living things (whether, human, animal or land) and I say that without humour because so many are attached to inanimate trappings of life.

Understanding your relationships with the world around is the key to understanding yourself and what your own nature is.

The following poem was written in relation to the Astrological star sign of Leo which is symbolised by the Sun and by the Lion.  I have always been intrigued by the seemingly paradoxical behave of a lion, which can seem indolently restful but is able to break its inertia at a moment's notice whenever the opportunity arises for the kill.

The Lion and the sun strike me as being both arrogant and humble at the same time.  The sun's brilliance portrays arrogance and yet it is the servant of the solar system.

The following poem was written to describe those things about all thngs leonine.


Monday, 3 May 2010

Weekend of Normality

It has been good to enjoy a relatively normal weekend.   Everything went to plan except yesterday's BBQ which was downsized due to the weather.  We were still able to catch up with the "Koobies" though.

The kids have had a great time and illness is not top of the agenda.  I'll be enjoying myself this week and will not entertain the next session of chemo until it looms large at the beginning of next week.

A visit to the "Thatchers" is always a treat and it gets the kids into the open.  The Thatchers have children slightly older but in the same age band as ours so they can be left largely to their own devices to enjoy the wide open spaces.






Mr Thatcher is the only person in our circle of friends to have been diagnosed with cancer.  He was unfortunate to be put through the mill a few years ago but came through with flying colours.  He was also treated by the same oncologist as me.

He was able to offer me a few pointers not least an honest appraisal of what to expect from the third session of chemo (which was pretty much in-line with my expectations).  His general take on my situation was also the same as mine and those close to me i.e. that although there are risks ahead the likelihood is that this a bad year rather than life-challenging.  He expressed his feeling of relief when I was given the all-clear from any secondaries, which is the reason for our shared optimism.  However, I think that you can only fully feel the significance if you have experienced the raising of that big flag during the initial investigations.  Of course, I refuse to be presumptuous as the future hasn't been written yet.

It was refreshing to see Mr T as he always is, itching to do something.  This time it was to try out his new contraption (a mower attached to the back of his tractor).  He had permission to try it out on one of his friends fields so of he went whilst the rest of us went for a walk across the fields, in the rain, with my family unsuitable attired.  Kitten was in open toed shoes!

The Thatchers are friends of Kittens from before I knew her but I have always enjoyed their company.  Kitten's bond with Mrs Thatcher originates from their nannying backgrounds and days spent in the bars of Chelsea.

Anyway our thanks to the Thatchers for a relaxing Saturday afternoon and an enjoyable BBQ.

Unfortunately the Koobies had to abandon their hopes of a BBQ on Sunday due to the inclement weather.  The hard fact was that there were 23 children due to attend and that is not manageable indoors!  We popped along for a few hours on Sunday evening as we have not really got together with them since my diagnosis despite them only being a few doors away.  Yesterday was assigned as a day of chilling for me so I wasn't the most energetic but we had a very enjoyable afternoon.  Again the children were in their element and the Sky Sports theme continued from the Liverpool v Chelsea match that was viewed earlier in the afternoon. Many thanks to the Koobies

So off we went to meet the Italian Clan for some ice-skating on Monday.  It should be noted that there is no chance of getting Kitten on the ice.  In fairness, she has tried it once with the family and the look of fear is yet to leave her.  She entertained herself in conversation with "Mrs Tirimasu" (one of her many culinary delicacies) whilst we all skated.  Boogle has lost nothing by her absence for a couple of months and the fact that the Italians are good skaters immediately puts her in a position of aspiration.  Our regular rink will be open again soon, so I will be making Sunday morning efforts to get her back into regular lessons.

A good appetite is always built with a couple of hours on the ice so the party continued the food theme of the weekend with an American Diner style lunch.

So despite the odd precaution not to overdo it the weekend was as if I were not ill at all.  That is good for the spirit.  I even sipped away at a bottle of nicely chilled Peroni beer on Saturday afternoon.  Although moderate alcoholic consumption is perfectly acceptable, that was my first full bottle of beer this year.

Yum.

Saturday, 1 May 2010

Video Update - Keeping on Top of The Game

Time for a video update

Knowing Your Body

A few days ago I had a return of energy and a certain feeling of europhoria as I emerged from the leg-work element of the chemo cycle.

If I am lucky enough to have the same experience in the next cycle then I will reign it in a little.

No major issues to report, but when I awoke yesterday I knew that I had overdone it a little in the last couple of days. My benign facial tumour is vascular and when my body is tired or a bit run down it feels "pumped".  Not like it has been doing dumbell curls with Arnold Schwarzenegger but enough that I am aware.

It is good to be aware of the early warning signs that your body can give you and I factored it in as I made my way in on the early train to work. Sam the Eagle and I were going for a meeting in the City with "Marmot" and the "Latin Scholar" to move a project forward, so it was worth making the effort.  The meeting was convivial and constructive so that made things easier.

By mid-morning "The Dragon" was surfacing in my back, ribs and chest (he only awakes when I am tired) so I decided that I would leave work as soon as  I had covered my tasks and try and get some rest before heading out for a meal with Notoplip, Sushi SandD and Kitten.

The end result was that I took a bit of a back seat last night as  I was pretty tired the whole evening.  It was still a good night out and it was good to catch up with SandD as I haven't seend them for a few weeks.

When we left the restaurant shortly after 11pm SandD looked like they had just performed their stretching exercises and were ready to run the marathon.  The truth is that, although I am not drinking, the others only mustered a few drinks between them.  Five years ago the table would have been saturated with Veuve Clicquot, Barolo and Jack Daniels and we would have been on somewhere else afterwards.  This time though I was happy to crawl under my duvet and rest my little body.  I think that Notoplip and Sushi were happy for the early lift home too and we had a relatively short but enjoyable night out.

Today, I feel better for it.