From Kitten

As Swordfish snoozes through the latter hours of 2010, I would like to thank you all for the support and friendship you have given this year.

His journey continues into 2011 and knowing there are so many friends out there will be of great comfort.

Please take every opportunity to create beautiful memories with your family and friends as they can be carried with you everywhere you go - forever.

I really don't know many of you lovely Bloggers but you enter our lives daily and I thank you.

So here I raise my virtual glass to love and friendship xx

Let's See how I do

I was back from the hospital by 12:30pm and everything went smoothly.

I must admit to not feeling at my best today, which clouds things a little.  However, I have spent much of the afternoon in bed in an effort to see whether the rest will help me get into a festive mood.

Oddly, it is to within only one day a year ago that I was diagnosed with exactly the same haemoglobin levels and that explained why I was feeling so lousy then.  New Year's Eve was not much fun then, so it would be nice to think that we can raise the bar this year.

I will be doing my best and hope that everyone has a really great evening and is able to throw themselves into the spirit of the occasion.

Work Continues to be Generous

My work has looked after me all of the way through this process yesterday's meeting produced more of the same.  It is not often that you have your managing director turn up for a meeting at your house on his motorbike!

This isn't the place to discuss arrangements but it is suffice to say that they are being very generous towards me.

One of the best bits is that they are continuing to leave the door open for me to work as and when I feel like it.  This is good because it can provide me with a useful alternative focus and also because they and I recognise that I still have something useful to contribute.

Immediate Benefits

I arrived home yesterday at around 9pm.

The journey home was unpleasant because the rhythm of my system had been disturbed during the day.  The effect was that we had to stop the car every few hundred yards for me to be ill.  I prized the fact that I probably looked like a Christmas drunk.

The illness continued when I got home, so I did the sensible thing and took myself to bed.

Despite the difficulties there are immediate and noticeable benefits from receiving the blood.  I simply feel much more centred and comfortable in myself and much warmer too. I go in at 9am, or as soon as I get there to receive the last unit and should be home well before 1pm.

During the summer I struggled with the concept of having someone else's blood, but there were no such reservations this time and I wish that I could shake the hand of whoever donated it.

Blood Transfusion Underway

I am in hospital and we are finally up and running with the transfusion.

The plan is to give me two units tonight followed by one in the morning.

I will be allowed home overnight.

The conversation with the doctor was very productive. More on that when I am not "tip tapping" on on iPhone!

First Fact of the Day

The first fact of the day is that my haemoglobin level has come in at 8, which is life-threatening.

I am being admitted to hospital to receive three units of blood and will be staying overnight.

So that is that argument sorted, I am definitely anaemic!

There's a couple of bags for Kitten to pack and we are just waiting to hear which ward I will be admitted to before we shoot off.

A Big Day for Facts

At around 9:30am I will be meeting with my Managing Director to agree the way forward for work.

It is clear that I am not capable of working anywhere near full capacity, though there is still room for me to offer occasional guidance and help.  The conversation will be interesting because it will scope backwards over the last few months as well as forwards.

Then it is off to the Marsden.  At the centre of that conversation will be my haemoglobin levels (ability to retain oxygen in red blood cells, where deficiency causes anaemia).  However, because my conversation will be with one of the top doctors there is scope to open the conversation out to cover all recent events including the seeming appearance of new evidence of the disease near the top of the oesophagus.

After a physically tough day yesterday that will be enough for me!

My mother has just told me that Gandalf and Bee will be bringing her up to see me on Sunday, so I will look forward to that.  My sister Tricky Crow will go to Wales to look after my father Grumpy.

Yesterday

No, it isn't time for a wonderful but slightly melancholic Beatle's song.

Under normal circumstances I would not have gone to the Chelsea match yesterday because I just wasn't feeling good enough.  However, it was the Italian hairdresser's first visit to Stamford Bridge and I didn't want to let him down.

I am pleased that I went though it was tough and I didn't have a good day physically.

Sometimes it is good to push the boundaries back even though it is uncomfortable to do so.  Chelsea even obliged with what seems like a rare win!

As you can see I am awake early, though planning on going back to bed.

Chelsea Tonight?

We had a pleasant afternoon with the Notoplip clan yesterday afternoon.

I did very very little and the anaemia makes me very sleepy, so even attempts to watch the darts on Sky on our return home were clouded by big chunks of sleep in the early evening.

We are trying to be patient to wait for an appointment tomorrow to see one of the fellows at  the Marsden and ensure that I get a good consultation to discuss the anaemia,  whilst balancing this need against living with  the problem.  So, I will pop up today to get the blood tests done in readiness and will then be able to see one of our favourite doctors tomorrow.  The reason that she is one of our favourite doctors is because she is a very able communicator and is very patient.  No stone is left unturned and one leaves the consultation feeling that all questions have been answered.

In the meantime I have tickets to go with the Italian hairdresser to see the Chelsea v Bolton match tonight.  I will have to be sure not to fall asleep on my seat and, on current form, not just on account of the anaemia!

A little Better

I dosed up with oral morphine last night and its sedative effect has helped slow the whole system down.

I am taking it easy today, but we are likely to go to Notoplip and Sushi's this afternoon.

It will be nice to get out of the house and I know that I will be accommodated as needs must.

All in all a better day today, but nothing that I am taking for granted.

Just When You Think That it is Safe

Yesterday saw more activity and the eating of "heavier" foods.

I have been on the up since last Wednesday and just when you think that things are lightening a little that seems to be the point when the disease pulls the rug from under your feet.

I was very ill last night (physically) and then spent the rest of the day and night in bed.

Today I am trying to build the calories back slowly without taking risks and the good news is that I don't feel too bad, though I am not extending myself beyond the simplest of foods.

There was some other bad news over the Christmas period and that was that the scans show some nodal growths higher up the oesophagus (above the stent) and these are causing blockages when I am attempting to eat the heavier foods.  This does not bode well for the future.

All in all, I am just happy that I managed a few decent days with my family when I needed them most and, for that, I am very grateful.

Dusting off the Decks

I have been threatening to dust off the Technics 1210s for a while and mix some music.

Working with music is always therapeutic, but as the decks have not been used for a while there is a bit of energy to expend in getting the set up right first.  I've made the effort today and have been crawling around on my hands and knees getting rid of this CD burner and that tape recorder and generally rewiring everything.

With a simplified set up I am now ready to use my laptop as a recording device;  something that is essential if you are going to give your children lessons (something that I have been badgered for).  If only some X-Factor contestants listened to the themselves before going on stage!

I also have to sort out some of my most used records which are in a state of disarray from when they were most recently used.  Whilst I was doing all this I couldn't resist spinning a few tunes and it is very uplifting, especially when there has been a bit of distance between oneself and the music.

I'm not going to throw myself madly into anything, so it has also been good to get out with the family and take a walk in the local park.  It was like an ice-rink though, so it was very gentle and cautious walking.

Meanwhile the kids are playing much less feverishly today, which is a boon in itself.  The atmosphere is altogether calmer.

As for me, you wouldn't recognise me from the person who on Tuesday had been bedridden for four days.

Day After the Madness

Like everyone's, our Christmas day was a day of highs and lows.  Oddly though it was divided into pre and post dinner.

The children behaved beautifully up to and including dinner and then the tiredness and excitement got the better of them and the day tapered off.

All in all though it was everything that I wanted it to be in the circumstances and I am looking for 'real' not for 'perfect'.

My only sibling and sister "Tricky Crow" came around to visit in the morning with her husband "Professor Dumbledore".  That was an enjoyable couple of hours and as much contact with the outside world as we required.   Of course there were the usual family and friend calls and we extended this to video Skyping both mine and Kitten's parents so that they could see the children open the presents that they had given them.

Today, as always, is a very different day.  Boxing day often seems an easier day to enjoy and I have risen from the pit later having read the the Sunday Times and having gazed out into the clear blue skies with the birds circling in the distance and perching on telephone wires nearby.  The day feels like clarity itself and I feel that a walk may be on the cards through the trickiness of the ice-smattered pavements.

My parents are still very much housebound and it seems that their village, at the head of the valleys, is the worst affected by the snow and ice.   My mother has not been out for close to two weeks now!

It is the stillness and crispness of days like this that I enjoy most.  A time for absorbing and for feeling and for relaxing rather than for doing.   A day for clear minds and clear thinking.

Happy to Report

I am on the computer to do a Skype, so that my Mam and Dad can see the kids open their presents.

Whilst I am on I thought that I would say quickly that I am happy to report that I am in really good shape today.

That is a real boon for the Swordfish family.

I can't say any more before Mrs Swordfish gives me a right hook for tip tap typing on the computer on Christmas day!

MERRY CHRISTMAS

A Candle Lit Surprise!!!!!!!!

It's not often that I get caught completely unaware, but today was such a day!

I was expecting Notoplip, Sushi and kids around at about 4pm and a while after I asked Kitten if they were on their way.  I was also worried because the kids had gone up the shop and it was now dark and I felt that they had been gone too long.

Kitten told me to come into back garden and when I looked up I saw that there were about 40 people all singing Christmas carols.  One by one through the candle lit darkness I recognised the people as being my friends and their children.  Not just friends that I see every week now but friends whom I haven't seen for a while and have been hoping to meet up with.

It was a deeply moving experience and one that I shall hold close to my heart.  I felt loved.

Notoplip, said that the expression on my face as I slowly recognised everyone was priceless.  Needless to say though, I was not lost for words!

A very big thank you to everyone for coming.  It was great to see friends from so many aspects of my life.  It is Christmas Eve and they have all taken time out from their own family time to share some joy with me.

I am truly humbled.

Merry Christmas

So, it is Christmas Eve.  We are all here and I am pleased to say that I am in reasonable shape and really looking forward to the next few days.

After the bad start to the week, Kitten's parents, Kitten and I decided it best that they don't come down.  This  was compounded by them having snow anyway.  So, it will be us four plus occasional visitors.

More than anything I am pleased that it looks like I will be in shape to interact with my kids.  This hasn't always been easy or possible over the last period but I hope that things hold firm for the next few days.

It has been a long and tough year and we have weathered it not least because of the support that we have had at every level.  Kitten and I would like to thank everyone from bottom of our hearts for the care, concern and love that has been showered in our direction, we have certainly benefited from it.

When we arrive at this point in Christmas it is just like having rehearsed for a show.  Now it is time to get on stage and just enjoy it.  I am ready and I hope that everyone else is too.  So, let you hair down, remember what it is all about "rinse it" for every drop of positive and uplifting energy.

Peace, love, harmony and best wishes to everybody.

If I thought that I could get away with a glass of Jack Daniels then I would raise one to you all.

The Wider Plan Revisited

A while ago I said that I had a wider plan to help maintain my quality and quantity of life.  I have revisited this topic as the comments of "Triple Witcher" in a another post made me feel that it was worth revisiting.

Sometimes though things are easier said than done.

In order to put such a plan into action the basics have to be right and they haven't been.  My situation has been very volatile.  Physically, I haven't been able to hold food down and scientifically there is hard evidence from CT scans that the disease is really behaving like a dog with a bone and is ratcheting up its activity.

Kitten and I have been working very hard to counteract these problems whether by resting, by consulting with the various teams of medics at my disposal or just working hard to keep my spirits up.

The set backs that I have had do not mean that I will not be pursuing my original thoughts though.

I am in conversation with the hospital as to whether we can still go ahead with trial drug.

I am also arranging to see a spiritual healer of some repute.  I know that this is an evocative subject but I will mention once again that I am not expecting miracles, rather I am looking to enable as much positivity in myself as possible and to focus myself on the body's constant self-healing process.  The healer I will be seeing has been involved with the scientific community (I can remember even fifteen years ago him performing laboratory controlled experiments with cancer cells in the States).   The main purpose of spiritual healing at this stage of the disease is to find one's centre.  To find peace.

There are many other things in my focus and these are in ensuring that my family is well set up.  Regardless of how long I am able to derive pleasure from the joy that is life, I have to talk with Kitten about what happens after it for the family and particularly the children.  These conversations are in many ways no different to the conversations that any husband and wife would have but under the normal assumption that both parties would be present.  Kitten is very keen for me to give as much input to my family's upbringing as possible and there is much pleasure to be had in us discussing our views, which are not always the same!

In a financial sense I am also changing my focus from Kitten being provided for to how to plan to use, protect and focus that provision.  This is important, especially with the family still being in its infancy.

Dad Goes home

The best bit of news today is that my dad has returned from hospital after his stroke.  He is out several weeks ahead of schedule, though clearly has a long road of rehabilitation ahead.

Things have not been easy for him or my mother.  My mother has had to contend with having a sick son in London and a sick husband in South Wales.  It is plenty to have on one's plate though her worries about not getting up to see me have been deeming inconsequential by the weather the last few days as she has been snowed in!

Many years ago I wrote a piece about my father and how I saw him from a childhood memory on the beach.

A Little More Improvement

I have managed to get a little more food in today and have been able to get out and about a little too.

I've been to the doctor's and Notoplip and I did an hour in town shopping for "our women folk".

Nothing too demanding, as that would be foolish considering the last few days I have had.  The focus today has still been on sorting out the medical side with the doctor's visit being part of a wider net of conversations.

I have been talking to the hospital about whether it is worth trying to proceed with the trial drug after Christmas and the feeling is that it depends whether I am having more good days than bad, otherwise it is counter-productive.

A lot of focus over the last few days has also been on the anit-sickness drug that I have been using.  That has now been switched to another "Haloperidol", which I am taking in liquid format.  If I am not able to keep this down and get it into my system then the next step is to have a pump fitted and have it subcutaneously (under the skin).  Obviously, I want to go the oral route first but the paperwork has all been done just in case we need to move with the other option over the holiday season.

The Joy of Christmas

Regardless of whether one is Christian, or indeed whether one subscribes to any recognised faith the festive period offers a chance for everyone to come into the moment through relaxation and a degree of reflection and forward thinking.

Of course, for many, much thought and planning goes into Christmas day itself and traditionally it is the time for exchanging gifts.  Whilst this is the overbearing focus I thought worth mentioning that it is also a good time to focus on things that we already have.

It is so easy to take for granted all the good things in our life or to place too much emphasis on the things that we want to have.  We are all guilty of "nit picking" at our partners or dreaming away our time thinking of our next holiday when often the best present we can have is the present.

There is much joy to be found in what is already there and we all have had our wake up calls, but perhaps mine has been the equivalent of someone shouting this message into my ear.

It is not my intention to preach though it is obvious that we all have love around us, which is often not expressed or which is taken for granted and it is love which binds us together.

Religion aside, the festive season is an opportunity to share and to feel that love between us all and I hope that feeling remains as special for you as it does for me.

After the Darkest Hour Comes Dawn

Yesterday was a very difficult day both physically and emotionally upon the news of the scan results.  In addition to the deterioration of the liver there also seems to be new nodes causing restriction of the oesophagus higher up.   There is little that can be done about the advance of the disease but I was at least hoping to get on the trial drug to at least try and slow it down.  It feels a bit like watching the arrows in the introduction to Dads' Army.

Yesterday's blog sounds all doom and gloom, but fairly so because I was so ill that I wasn't even able to keep my anti-sickness drug down.  The other thing that hit me really hard was that I have been trying to ensure that I get a good Christmas with the kids and yesterday that seemed a very distant prospect.

Kitten did a sterling job in looking after me yesterday (as always), but of course she was also affected by the news.  My spirits were lifted a little by a visit from Notoplip who had brought the Huffty back from their mid-season football party.  Notoplip had decided to treat the boys to a bowling party as thanks for all of the effort they have put in so far this season.   The Huffty returned £10 richer as there was a £5 prize for each of the bowling matches and he won both.  From what I hear though the clever clogs may need a new word introducing to his vocabulary; "magnanimous".  Notoplip found it funny that when he won the second match he said "Uncle Notoplip, if I give you the fiver back will you give me a tenner?"

Today things are a little brighter and I have had some medication and a small helping of soup.  I will be taking it very easy and just trying to pump in little amounts of soup often, so that I am not challenging my body whilst slowly building up my strength.  There is more pain today but that is simply because I did not manage to hold in any pain killer yesterday.

Hopefully, I can get a little traction again.

Difficult Times

The last few days have been very difficult.

The main problem has been the inability to keep food down.  My number one suspect for this is the progression of the cancer into the liver.

It is a double whammy really.  On the one hand I have the primary cancer of the oesophagus,which stops food going down.  We have circumvented that problem by putting a stent in but now the cancer in the liver means that the food is rejected when it gets into the system.

So, very little nutrition in my over the last few days I had to call time on the idea of having the trial drug today.  There is no way that I would have got through the administration of intravenous drugs.

Thoughts have turned to why I am so sick and the answers came when talking to the doctor at the Marsden.  As suspected, the disease is progressing in the liver and is described as "very aggressive".  So much so that thinking in terms of long months may prove to be ambitious in itself.  I hope that doesn't prove to be the case, but  it is quality time that is important and I am not even getting any of that at the moment.

The first gambit from here is a pump method of delivering anti-sickness drugs with the system being under the skin.  That is being looked into tomorrow.

I wish that I had better news to deliver at this festive time, but I don't.

Brighter Views

Whilst what we had here on the weekend was only a couple of snow flurries it deposited a few inches.  The kids have been enjoying it immensely and it is good to see them doing what they do best, which is simply being kids.

Mustard man lives opposite me and the children have been playing in the white stuff with his kids who are a few years older.  Mustard man also took Huffty to see some ice-hockey at the "local" rink last night which he thoroughly enjoyed.  Boogle didn't fancy it because she bumped her head on the wall during her earlier snow escapades (is there a song in there somewhere?)

Conversations continue with my dad via mobile phone despite the fact that  I never thought that I would experience the day that he had a mobile telephone conversation.  He was meant to be brought home for assessment today but the snow is still falling heavily day on day there, so the situation is not easing at all.

Somehow I am going to have to get out in this and do my Christmas shopping!

Positivity, Pragmatism and Illness

The personal messages I receive regarding my approach range from "You are so positive" to "Don't listen to dark thoughts" to "Try and be positive".

That seems to suggest that there is a scope of what people think that my approach and frame of mind is.

In the past I have described my approach as positive but pragmatic and I believe that is the best way that I can phrase it but, perhaps, it deserves a little more explanation.

Firstly, I have had a bad weekend just gone.  I have spent virtually all of it confined to my bedroom being ill whenever I try and get up.  In turn I have eaten very little  and so am feeling a little weak.  Given the symptoms and feelings I have had it seems likely that the problems that I have been experiencing have been caused by the cancer in the liver. Having had a busy day on Friday clearly won't have helped but I felt good throughout and it is good to live a little too.

I have now got my self onto extra anti-sickness drugs that I was prescribed last week and we will see how I go on them.  The main objective from here is to try and get myself into chemotherapy on the new trial drug tomorrow.  In order to do that I have to start eating and stop being sick.  Because I feel so weak at the moment that will take a little willpower and some help from Kitten too.  I should say though that with a couple of milkshakes and bowls of soup in me I think that I will be fine.

I've just had something to eat and have taken my anti-sickness drugs.  Also doing little things like the blog shift me up a gear from just being in bed.  It is all positive and in the right direction.

It is good to have a positive attitude but not a blind one.  If I danced my way through weekends like I have just had without thinking about what was going on then I would be in no position to talk to the people who are in a good position to give me guidance.  In other words what I am saying is that blind optimism in the light of hard negative evidence borders on the imbecilic.  That said, I am working hard to get into chemotherapy because I have feeling that the drug will be advantageous to me and that has to be a positive thing all round.

I will not know whether I receive the drug or not and the doctors will not know either.  The way that it works in a double blind study is that only one person in pharmacy knows what I am getting and the drug company that supplies the drug will know and analyse the results accordingly.  However, I am convincing myself that that the drug will be good for me and that I will definitely be getting it.  That way I am taking a positive frame of mind even if it is to a placebo.

Being positive but pragmatic means that you keep working through the negative.  To me it is no different to working through project at work that looks doomed to failure.  You keep on talking to the stake holders, keeping everybody informed and continually look for making things a success whilst also having a realistic appraisal of the situation.

Weekend Stuff

There's not much news from South Wales as everyone is snowed in.  My mother can't even get outside her house let alone up to see my dad in the heights of the Rhondda valleys.  How much an obstacle this proves to him coming home in a reasonable time frame remains to be seen.  I say this because first they must bring him to his house for an assessment of how suitable the living area is for his condition.

The biggest news out of South Wales is that my dad (an avid hater of mobile phones) has been given a phone by my mother and has actually used it to call me on.  Yesterday, I told him to let me ring him back, as he is pay as you go.  He has got the hang of ending the call but unfortunately he hadn't realised that you are not meant to switch the phone off completely.  I guess that there is a learning curve there for him.

Meanwhile Huffty, Sonic, Notoplip and I are disappointed that Chelsea's match with Manchester United has been called off as we were looking forward to going.

I have also been mentioning that I have been looking for an activity to indulge in with Boogle, given that I am not really up to ice-skating.  That moment has arrived since I met up with the Sound Man on Friday.  I now have a piece of kit that allows me to plug the decks rig into the laptop and record what we do on there.  Listening back to how good or bad you are is an essential part of learning to DJ.  I figure that if I am going to teach Boogle to DJ then I should at least endeavour to turn out a good one.

Maybe Boogle will play the Ibiza Space Terrace one day.  There's nothing like living your dreams through your kids, eh!

Good News on Dad - A Smile on My Face

Having been rushing around all day,  I was wondering why I am still grinning and still relatively full of energy.

It is because there was good news from my mam today.  My dad is making a good recovery and it looks like he will be coming home before Christmas.

This well in advance of the six weeks that they were thinking of keeping him in.  It has to be said that the "old man" is doggedly determined.

Happy Dayz.

A Strong End to a Volatile Week

It has been a week of ups and downs but it has finished on a positive note.

I was thrown into a bit of a maelstrom today with some work that needed to be finished, immediately followed by a trip to the bank manager, followed by a meet up with a friend, followed by a trip to pick the kids up from school.

The meeting with the friend (the Sound Man) was pre-planned and I have not seen him for quite some time.  When I DJed regularly he used to supply most of my work.  The trip to pick up the kids was unplanned but the snow forced us to go straight to school rather than dropping me off first.

The Sound Man has a festival planned next year for the 28th and 29th May, which should be a lot of fun.  It is 80's themed and so far includes

• Kool and the Gang
• Billy Ocean
• Jocelyn Brown and the Brand New Heavies
• Aswad
• Oddessey
• Heatwave
• Imagination
• Nick Kershaw
• ABC
• Tony Hadley (lead singer of Spandau Ballet)

He wanted me to DJ between acts and I would love to do it (nothing better than a big audience), but I cannot commit to being in shape.  It is a shame, but I still aim to be at the event and have my fair share of fun.

It was good to catch up.  We spent many and evening DJing together and have many tales.

Whilst all this went on Kitten managed to do a bit of Christmas shopping too.

So a busy end to the week and feeling good too.  It may seem just like a normal day but at the moment it is more than a man can ask for!

Another Visit to the Child Psychologist

Today included another trip to the hospital, but this time it was to see the child psychologist and with children in tow.

It was a very useful meeting as it was the first time that we have visited with everyone knowing that my condition is now terminal.  The depth of Boogle's anger was exposed and the children contributed much more than they have in the past.

The children both have sessions scheduled independently for themselves now and they both feel that they will be able to talk more openly on their own.  The psychologist is very good with them and has their trust.

Kitten and I have found the sessions useful in helping us to keep evaluating what the situation needs.  We are fairly adept on our own, but an external listening and guiding ear has also proved useful.

This is a free service that is provided courtesy of the NHS (though I believe that it relies on some kind of charitable trust donations)  and it is a valuable one, in my opinion.

Yo Yo - Check Mate?

After a bad day yesterday I have been fine again today.  I seem to be "yo yoing" a little, but have tried to make sure that I am not overdoing it today.

It isn't always simple to map the days because I have spent another three hours up the hospital again today having a CT scan and having an ECG for my heart.

I did a couple of hours work this morning but, feeling well, the whole experience has been much less stressful and much more tolerable.

With hospital experiences I normally am well prepared, stoical and organised and so I was today.

In the interests of the honesty that I try and permeate this blog with though, my hospital experience is starting to become slightly surreal.  This is my third time around the block for treatment at Royal Marsden.  The first was chemotherapy to get me to theatre for curative surgery.  The second was another throw of the die with added radiotherapy because the first did not work.  This, the third, is to try and prolong the end game.

It is surreal to look in on the Medical Day Unit room with everyone on the chemotherapy machines, drip dripping and most of them on earlier phases and still full of hope.

For me I have the friends of support and compassion that everyone gives me and the hope of recovery that would equate to the greatest escape since that of Lazarus.

The object of this is not an exercise in self-pity but just to give a window of the other side of how it feels.  I still have all the positive feelings that the drug (if I get it in a 50% placebo trial) will do me some good and improve both my quality and quantity of life.  I am still driven by that positivity, but I still feel the darker feelings too.  That is only natural.

Another Bad Day but Glimmers of Light

Yesterday was a tough day.

I was ill first thing in the morning at then tried to eat later in the morning and was ill again all before having to spend three hours at the hospital being scanned and undergoing medical checks as a precursor to embarking on the clinical trial.

These situations are not easy.  Obviously I was unwell yesterday but still having to function without sustenance.

The source was undoubtedly hepatatic but there were too many variables the previous day to be able to pin point what caused the set back.

The lesson learned is that I really do have to take it easy until we have this playing field firmly levelled.

It hasn't been all doom and gloom around here recently, though.  On Sunday Notoplip and Sushi came around to watch Chelsea vs Tottenham with us and they had children in tow.  The place was manic by normal standards with the youngest being two so it brough a lot of joy into the house and there was much shouting, singing and frivolity.  I was knackered by the end of it and spent the evening dozing, but it can't be all doom and gloom all of the time!  We normally go to their's because of the little one, so it was an interesting exercise trying to make the place two year old proof.

Boogle Shows Her Mettle

My daughter Boogle took it upon herself to announce to her entire class that daddy's disease has got worsened, that it has gone into his liver and that he isn't expected to get better.

Boogle shows elements of her daddy's character and it wouldn't be out of character for me to deliver news in such a way, but she is generally more reserved that I.

She says that she feels better for having got it over and done with in one go, as she had only intended to tell her best friend and teachers yesterday, so it is good that she has taken control.

Both Kitten and I were quite surprised by her method of delivery simply because of her character, but we are pleased that she is content in herself.

Platform to Fight From

If you have been following the blog over the last couple of weeks you will have seen that I Kitten and I have been struggling to get things onto an even keel.  We have been trying to establish a platform from which we can fight from.

I am pleased to say that it looks like we are pretty much there.

I was at the GP's this morning and we have now got the balance of drugs about right.  That helps enormously in how I feel during the day.  Just over a week ago I was propped up in bed unable to do anything whereas now I am moving towards a semi-solid diet, I am doing some work during the day an am moving on to more aggressive types of treatment.  The only blip I had was on Saturday when I ended up back in bed for much of the day, but I am putting that down to the over-exhuberance of the previous days;  a gentle reminder from the disease about just how volatile and powerful it is.

The kids are on-board and, although upset, are coping well.  I am trying to encourage them that if they are going to tell people anything then to say that daddy isn't going to get better from the cancer rather than "daddy is going to die".  After all, we are all going to die!

From this place I can think about fighting my own corner.  There will be good times and there will be bad times but it is my firm intention to enjoy the good times whilst they are here and to do what I can to encourage their stay.

I also hope that I will be forgiven for not being wildly optimistic whilst in such a medically deficient position.   I remain optimistic that I can do my best to make the situation work for me, but I feel that it is equally important not waste the quality time I have at my disposal now.  That is why Kitten and I will be making plans to maximise the fun our little family can have sooner rather than later.

Poetry

Over the period there has been a number of comments about my poetry, which is woven into the fabric of the blog as I have used it to help articulate moments and events.

I thought it worth creating a separate page for it and will be doing so shortly.

I will also be creating a separate page for my "current status" which will provide an at the glance view of my state of health without sifting through many recent posts.

The Wider Plan

The last couple of weeks has been filled with illness and the need for adjustment.  I had a bad day yesterday, which revolved around grumblings from my liver and it put me back in bed for most of the day.

Added into all this has been conversation about preparation for the inevitable, which goes with the terrain of palliative care.   It is good to plan for the percentages but it should not be overlooked that my underlying way of thinking is simply to try and get good ship Swordfish back on track and then plan to get as much quality and quantity of life as possible.

I am planning for the more positive view point in a number of different ways and here are some of them:

• Through all of the tribulations of the last couple of weeks the overriding desire is to get the balance of drugs right to allow me to function in a way where I can get the best out of my day
• Once on an even keel my desire is to do the gentle healthy types of exercise that I did so regularly in earlier phases of treatment.  Chi-kung figures heavily in my thinking as it is scientifically acknowledged as being good for the well- being of cancer patients and, more importantly, recognised by me as being helpful.  Simple things such as regular walks also figure heavily
• Looking into supplements and / or herbal type support for boosting the weaker parts of my system and my general well-being
• Continuing with complementary medical support
• Working to create the most positive atmosphere for my children.  This obviously includes keeping myself in the best possible shape and things like mini-breaks.  The happier my family is the happier I will be
• I am working to release funds to open up opportunities for my little family
• Visits to spiritual healers.  This is an interesting topic and not everybodys' cup of tea.  It should be understood that this is an area that I am already conversant with and know of individuals that I believe will be able to boost me in many different ways.  It should be acknowledged that I am not in the business of chasing rainbows.   I have a particular person in mind who is internationally renowned and whom I have known about for fifteen years
• Exploring any drug opportunities that may be available.  It would be good to think that I would definitely get the the drug in the Marsden study in which I am participating, but there is only a 50% chance.  As we move down the line there may be an opportunity to pay for a drug but the situation is that there isn't a drug which is proven as being able to help, so there has to be a slightly observational approach at this moment.  Money isn't the issue here rather it is efficacy

In summary, the illness has forced me to take a big step back and look at the wider picture but it is my hope that we can move forward from here and that I can do my best to get the most out of life going forward in every way.  With  the level of support that I receive I am well positioned to do so.

Mash and Mince

My improvement of the last few days has been mirrored in my eating and I am very very pleased that last night I was able to eat some very creamy mashed potatoes and some lamb mince.

Yum.

An Aggressive New Line of Treatment?

The Marsden have been looking for methods of treatment that may be of benefit for me.

In my first phase of treatment I received the drug bevacizumab, which is better known under its trade name of Avastin.  This is one of the drugs that the government has banned the NHS from using because of cost.  It has been most prevalent in the treatment of metastatic breast cancer.  The drug is available via clinical trials, which is how I benefited from it.

When I received Avastin I received it with other chemotherapy drugs and  my eating improved immediately and considerably.  This is something that did not repeat itself when I later repeated some of the chemotherapy drugs without the Avastin.  Nothing about my case is conclusive but Avastin is known for tumour shrinkage.  In my case it was used to try and shrink the tumour in advance of surgery.

So, what have the Marsden come up with?  They have identified a drug trial in which they are yet to take part.  It is for the drug Ramucirumab, which is from the same family as the bevacizumab drug.  Strictly speaking these drugs are not chemotherapy drugs rather they are targeted drugs which work by attempting inhibit the tumour receptors that are responsible for getting the tumour's blood supply.

The aim of the treatment is curative rather it would be an attempt to slow or inhibit the tumour's growth.

The study that I will be participating in will be a "double blind" study.  Fifty percent of patients receive a placebo and fifty percent receive the drug.  It is called a double blind study because neither the patient nor the doctor knows who receives which whilst the study is in progress.

I will attend screening on Tuesday, 14th December.  I will then have a CT scan and MUGA (heart) scan on Wednesday 15th and will then receive treatment on Tuesday, 21st December. Treatment will then be every two weeks.

One of the benefits of taking part in the trial is that I will receive CT scans which will show the progression of the disease.  Of course, that could be considered to be a benefit or a hindrance depending on the view point.

The attached article from earlier in the blog shows how the "cousin" drug bevacizumab aims to work
http://thebookofsilence.blogspot.com/2010/03/trial-drug-bevacizumab-avastin.html

Children in the Loop

The children now know that daddy is not expected to get better.

It took them all of about one minute to get to the salient question, which is "So are you going to die, daddy?"

We did our best to paint an even picture about the whole scenario, but such an event opens their imaginations and is very distressing for them.

We now have the weekend to make a good start on this new phase of the journey for the family and to bring them firmly under our wings; where they belong.

Here's to preparing for and having a good Christmas.

I raise my glass to everyone.

Palliative Care - A Visit from the Community Nurse

Today was our first visit from the community nurse.  Most people will know this as  a visit from a "MacMillan" nurse.  Strictly speaking this lady was not a MacMillan nurse but it was the same role that she was addressing.

Being in the arena of palliative care is a new experience and it is a change of conversation and of focus.

Some may think that it is an area that should be researched as you go through the process, but it really isn't something that you would wish to think of until you are unfortunate enough to have to do so.

The fact is that my cancer is secondary in the liver and both scientifically and medically there is no way back from there.  One of the questions that I have not asked but which it was time to ask is "how am I most likely to die".  There are a number of ways in which I could go but the most obvious now is from liver failure.

We covered a whole raft of subjects including the role of the local hospice.  The local hospice has quiet a prominent place in the community not least because there is a particular road in the area which goes completely over the top with the Christmas lights every year and does so to collect for the hospice.

The other main area of conversation was the continued discussion on my recent blip and the necessary drug control to keep things on track.

The openness and frankness of the conversation was refreshing and helped allow me to continue to accept the zone that I am now in.

It is perhaps not understood by all or perhaps not accepted by all that once secondary there is no way back but that is hard science.  Of course, where there is breath there is hope and I will continue to breathe.

Billy the Fish

Billy the Fish, Notoplip and I have been somewhat of a triumvirate since my mid-twenties.

I have explained that I met Notoplip when my other mates (including Car Crash and Eddie Cruise) had either settled down or gone travelling.   Billy the Fish and Notoplip have been friends since childhood and it is no surprise that I met the at the same time together.

I socialised with both regularly through my twenties and early thirties and spent a lot of time outside of the pubs and nightclubs with Billy the Fish.  This because we spent our mid to late twenties as training partners down the gym.   We would train rigorous and long sessions 3-4 times a week and were very close during this period.

During this time all three of us were in relationships.  The difference being that whilst Billy the Fish's relationship was the first to break down (after several years) it also was the only one to recover.   We all established relationships in the summer / autumn of 1991 and Billy the Fish is still with his partner Saucy Sue.  Notoplip and I were with our partners for about five years or so but have since found the women of our dreams :-)

I am still very close to Billy but see less of him because we all move into our grown up spheres and his is more dominated by community circles such as his children's schools whereas I have always been happy to slip into Notoplip's circle revolving around the football club he has been involved in.  It is now the football club that Huffty plays for too.

Needless to say that, we all still get together for major occasions and sometimes just for a curry and a beer but the point that I am making is that whereas I now see less of Billy the Fish he is still there in the background and is the kind of mate where either of us would do anything for each other whenever required.  A good friend to have.

Billy is perhaps more reserved than Notoplip but that does not mean that he is not capable of being equally as foolish and as childish.

Even though he is more prone to be inviting all the mums and dads back from a school social event he is on record as entertaining them all until four in the morning with his extensive wine cellar before kicking them out and then retiring to swim around his ample sized pond in his full evening wear.  Indeed I recall seeing him the following morning at a children's party where Notoplip and I looked as fresh as daisies and Billy looked "slightly worse for wear".

Billy the Fish is so called because of his love of fishing, though he has less time to practice the art these days.  He was also somewhat unflatteringly referred to as "Cod Face" during his twenties though the resemblance is there for all to see.

He can also give Car Crash a run for his money.  Whilst I cannot recall him having a car accident in recent years I believe that he wrote off an incredible number of cars in his teens through the sort of irresponsible and juvenile driving that we would all frown on if we saw it from teenage boys these days  :-)

I am reminded of the European Championship Quarter Finals in 1996 when England where hosts.   Only Billy and I (of the quintessence) were attending the wedding of our good friend "Baldy Ian" in a very plush four or five star Midlands hotel.   England were playing Spain that day and it goes without saying that all of the male guests were doing their best to keep in touch with the progress of the game.  Billy was in fine spirits.  He was with Saucy Sue and I was with my then partner but it was him that was taking the lead on our table to entertain every one and doing a fine job too. 

Whilst all the male guests had resigned themselves to not knowing what was happening at the end of extra-time it transpired that Billy the Fish had set himself up in the Kitchen, which was adjacent to our table.  He had befriended all of the waiters and was sitting with them listening to the penalty shoot out whilst helping himself to as many roast potatoes as he desired.  We only discovered when he started popping out to give as a goal by goal resume of the penalty shoot out score with roast potato in one hand and vino tinto in the other.

His mood continued into the night.  There was a band playing and when they took a break they asked that no-one touch their musical instruments.  That was no warning for Billy who immediately set himself behind the drum kit and started banging his pots and pans whilst singing "Three Lions on a Shirt" in front of the whole wedding.  It went on for quite some time too.  The only person who look uncomfortable was the band's drummer.

I can still see it now  "Three Lions on a Shirt.  Jules Rimet still gleaming.  Thirty years of hurt.  Never stopped me dreaming".

A Good Visit

So the delegation from South Wales came and went yesterday afternoon.

It was quite unusual to see my mother and all her siblings without any of their partners.  They are an eclectic bunch as can be seen from their occupational backgrounds.  Gandalf is a professor, Mr Butcher is ....erm ....a butcher, Lindylu has an accounts background and my mother is an alternative therapist.

It was very uplifting to see them all.  The fact that I was in the best shape that I have been in for weeks meant that the mood was very jolly and it was great for everyone to see me like that, especially when considering the bad news that we have had recently regarding my dad.

A delegation from South Wales is not the quietest thing that can happen in your life so it is a good job that I was on form.   As you can imagine a lot of their day was spent travelling but they still managed to spend the whole of the afternoon here and I am very grateful to everyone for making the effort.  That includes Kitten who was on the go all day making sure that everyone was looked after and was fed and watered.

Because I am in good shape there was talk about the possibility of us making an appearance in Wales over Christmas and that remains a possibility.  Gandalf even offered to run us up and down the motorway but, if I am in this shape, either Kitten or I could drive.

The kids were pleased to see everyone too.

Feeling Very Good

The blog has been gloomy recently but, of course, it just reflects the reality of my situation.

When I started the blog I had hoped that it would be an uplifting tale but full of the highs and lows that one would expect to occur on such a journey.

Although things from here don't look the best overall I still intended to keep a balanced perspective and, with that in mind, I thought that I would just report that I am feeling very good today. I am working as a continuation of yesterday's endeavours until my family arrive at lunchtime.  I feel good physically, clear headed and most of all I feel happy.

Several people have said that they don't know how I can stay positive given my recent news, but that kind of misses the point.  The point is that life is for living as long as I can feel in reasonable shape I will be trying to squeeze every drop of joy out of it that I can.

A Little Delay and More Visitors and My Dad

It had been our intention to tell the kids about the bad news this evening and we had made special arrangements with the schedule of an event that Boogle was attending after school.  However, her insistence that she wanted to take part in all elements of the event combined with my mother's visit tomorrow means that there is yet more delay.

My mam is coming up from South Wales with her brothers and sister Gandalf, Mr Butcher and Lindylu tomorrow, so it will be good to see them.   The kids will be happy to see some familiar faces after school.

Given this evening's events and tomorrow's visit it makes sense to save the conversation with the children until Friday then we can manage them through the weekend without packing them off to school the next day and without other people being here.  There is a lot of opportunity to provide the emotional support they need over the weekend period.

There is no wish to delay this, I really would like to get on with it as soon as possible as we can then all move on as a unit.  At the same time I don't want to force the event.  Suffice to say though that even if a moutain were to get in the way of the conversation on the weekend the mountain will have to move.

Meanwhile, my dad is now in a stroke rehabilitation unit in the Rhondda valleys.  He has his good privacy with his own room, shower and television and is being well looked after.  Unfortunately the physical impact of the stroke seems to be quite heavy and there is a long road ahead for him.  My thoughts are with him and my mam.

Back to a Normal Day

As I was seemingly picking up yesterday I arranged for a couple of the chaps from work (Sam The Eagle and Super Frank) to pay me a visit to help out on our latest project.  This was on the understanding that we would have to cancel if I was poorly.  I am happy that we were able to shift some work and continue with my handover of the project.

Today has been much much brighter for me, feeling and eating better.  In between the work I managed to get to the school to watch the Huffty's Christmas play.  This is all a far cry from just laying in my bed only a few days ago.

Hopefully there will be more food tonight and plenty of rest to ensure that I do not overdo it.

A Number of Visitors

Over the last few months I have been much less socially active because of the demands of the treatment and the disease.  The blog has been worth its weight in gold as a central point for those I know to keep appraised of the situation and it has shielded me from repeating myself when I could better use the energy.

Because all of my family except my sister live in Wales it is not as though my front door is like a revolving door and it is good to see the occasional smiling face pop in whether neighbour or on of my mates.  This weekend things were a little different because it was clear from the blog (both in content and in lack of it) that things have been a little tougher.  With visits from Notoplip, Billy the Fish and Car Crash (that's my best man and two ushers) plus my sister Tricky Crow and my mother on the phone saying that she was desperate to visit it felt like I was about to get the last rites!

All put in welcomed and mostly unannounced apearances and the surprise element provided an extra lift.

"Rope a Dope"

Some may be old enough to remember Muhammad Ali and George Foreman's famous "Rumble in the Jungle" fight in Zaire.

For the first several rounds Ali just lent back on the ropes and let George throw everything he had at him.  According to the media there was likely to be only one winner of this fight as George had swept all before him on his way to the meeting including old adversaries of Ali (such as Joe Frazier) with consummate ease.

Ali was a wily fox and limited the damage of Foreman's efforts until he had exhausted him and then struck like a cobra to take a tiring Foreman out of the ring.

To the uninitiated it looked like Foreman had been destroying Ali because he was the one scoring the points by throwing punches and Ali had been passive. Clearly, Ali's strategy was a risk because he was losing a lot of rounds and relying on a well conditioned Foreman tiring and becoming vulnerable.

Last week was not at the same level as that because it was the only strategy that I was able to enact i.e. laying in bed and trying to work out what drugs were having what effect and what was the best way to get out of the situation whilst this beast of a disease had a free rein to attack me from all angles.  Conserving my energy was the only way of combating the situation especially with the effects of the nausea.

The strategy seems to be working and I have a run of consultations that may help me get the balance of the drugs and the approach to the current status of the condition right.  Yesterday, I was at the Marsden and today I was at my G.P.'s.

My G.P. is very thorough and we reflected on yesterday's discussion whilst dishing out the prescriptions that I did not have an opportunity to get yesterday due to time constraints.  We also discussed how we move forward because I have my first visit from the MacMillan community nurses on Friday and this is an area in which they excel.  I am then due back at the G.P.'s next Monday and I hope to be in a stable place by that time.

Today, I have been more active and am also about to take on my third meal of the day, which is a marked improvement.  If anything I am mindful of doing too much too soon and there is a balance to be struck but signs are encouraging that the blip that I have had may not be wholly representative of what I will facing every day going forward.

The next job on the list is telling the children.  We had intended to do this over a week ago but were not able to because of my condition.  It is not just about telling them but also about dealing with fall out.  That process will start tomorrow.

Kitten just needs to say...

I love you x

A Worthwhile Trip to the Marsden

During a telephone conversation with my GP earlier this week we realised that my relaxed approach to taking my gastric tablets may at least be partially to blame for my sudden dip.

There was a simple reason why I was being a bit lax and that was because they were making me sick every time that I took them.  I have been taking the tablets, or similar, all the way through the process but they are now more important with the stent in place.  This because there is isn't anything to control the reflux of stomach acids out of the stomach.  The stent effectively removes the controlling sphincter at the top of the stomach.

We got around the problem by using dissolvable tablets and I have been rigorous in taking them since last Thursday and the pain has improved considerably and the tablets are no longer making me ill.

The problem that I have had though is that there has been an underlying nausea which has made me ill after I have eaten.

Today we arrived at the conclusion that this is likely to be caused my liver problems resulting from the cancer being metastatic (secondary in my liver).  So, we are upping the dose of the anti-sickness drug that I take and moving to a new one if that does not work.

It is good to know that the considerable effort that I have been making over the last few days, whilst not completely successful, has taken mein the right direction.  You would think that there is not a lot of effort in sitting in bed, but the last few days have been very difficult.

There were further changes regarding pain relief and also discussion of a drug trial to see if my quality of life can be improved.  I have to read through the information and make a decision in the next few days if I want to take part in the trial.

Hopefully, I am heading in the right direction for stability central and in good time for Christmas.

Meanwhile news from South Wales suggest that my father's need for rehabilitation is substantial but that there is promise.

Boogle has a Spring in Her Step

Much of my recent talk on the blog about childrens' activities has been about the Huffty's football.  We all try and go to his football matches and we have several friends and their children who are also involved.

It was a different focus last year and early this year when I was spending a lot of "daddy time" with Boogle on the ice-skating rink helping get her and myself get to a good standard.  Of course, my physical condition has meant that I have had to let go of that activity and so Kitten takes her to her lessons but is not keen to dance on ice herself.

Perhaps Boogle's favourite regular activity though is that of cheer leading.

When it was first mooted that she might like to do cheer leading I wasn't keen because my image was one of teenage girls and young women acting as some kind of pom pom support act for male sporting teams.  I was unaware that this activity is somewhat different to what I thought, being a kind of fixed routine troupe dance activity with the focus on regular competition.

Boogle is no slouch in the classroom, but perhaps that is more her brother's domain where as her's is in the broad spectrum of creativity.   I am keen for her to develop her creativity and also am happy when it is in a structured environment.  That explains why the ice-skating and also why I would also take her out onto the streets for the more free-from rollerblading.

Boogle is tall and light for her age and she has been put into a troupe of older girls where she is the "flyer".  in other words she is the one that gets chucked in the air.

She has been in a few competitions and they have always come second and I believe that it has been to the same team.  Yesterday she was competing at Crystal Palace and her team came first.  It would have been good if I could have been there, and I know that she was keen to attend, but I am very pleased that she won.

For me it is not that winning is so important in its own right but I know that whilst Boogle can be feisty, independent and determined she is not as confident as she makes out.  Something like this will give her an inner boost and pride that she can take with her.  That will help her to a build a self-confidence that is less fragile.

The Mood Brightens a Little

Once again, thanks for all the messages of encouragement.  Today has been a little better all round.

The news regarding my dad has all been fairly positive and they are letting the physios loose on him tomorrow.  My mam seems in reasonable spirits and I have been in regular contact as well as taking advantage of the miracle that is Skype video calling.

There  have been several visits in the last few days.  Firstly, from Notoplip then Billy the Fish, Car Crash and Tricky Crow.  More on those later.

My main personal aim has just been to get some stability going.  What I mean by that is to get myself into a situation where I can spend some decent time with at least Kitten and the kids.

The main obstacle to that is to get food in and keep it down.  I have been rigorous with my drug regime and with resting in an attempt to make that happen, but also fighting a battle with nausea.  Today has been better than yesterday because I have had two shakes (so about a 1000 calories) and kept them down.  I will be attempting another 500 calorie meal before retiring and, if I can manage and hold that then I will be in a better  place.

I am not setting my goal high, rather I am trying to rebuild a platform that I can operate from and continue to build on.

The Dealer Shows His Hand

A number of months ago I found myself in a dimly lit room with a dark, hooded and unwanted figure sitting at a table.  He beckoned me to sit with him and since then we have been playing cards with the cards of his choice and with him dealing.

I have always subscribed to the adage that in life you can only play with the cards that you have in your hand at any given moment.  There is no point in hoping for you situation to be different or better because it won't help to extract you from or capitalise on your position.

This week I have been struggling to sit at the table and continue the game, so the dealer has decided that it is time to up the ante.

Today, he stretched out his scraggy little hand from his cloak and delivered the news that my father has been in hospital since Thursday having suffered a stroke or series of mini-strokes.  He suffered a number of mini-strokes a few years ago but has been stable since then, but I have remarked to my mother on the last few times that we have met that he is looking poorly, so there is no great surprise. Nevertheless it is not the sort of event that anyone wants to happen and I feel especially for my mother who now has a poorly son and a poorly husband.

He is in a good place and the physiotherapists are optimistic, so we will have to be patient and see what miracles that they can work.

My concern is foremost for my parents, my sister and other close family, but it is difficult to find myself in a position where I am in no condition to help.  My own condition has coloured the deliberate delay in me receiving the news, which I know was intended to be with my interests at heart.

Through all this it feels like the dealer is playing a rigged game and has me firmly strapped to the table.
Right now there is a part of me that wants to get off my chair, deck him kick the doors down and stride out of the room but the truth is that there is nothing there to grasp at other than my own discomfort and imagination.

Sometimes life can be harsh and we just have to live with it.

A Week of Withdrawal

Thanks for your well wishes last night.

This week has been the only time that I have parked myself in my bedroom in an effort to get back on an even keel during the whole duration of my illness.

It hasn't been a great week and today hasn't been any better.  I have been nauseas on the new drug but have taken the stance that I have to give it the chance to "bed in".  At the same time I have been trying to get a least a few calories down.  I have been resting as much as possible in an attempt to store as many of those calories as possible.  In a sense I am trying to swing the pendulum of this week slowly into my favour until I am in a better place.

I have hardly seen the kids, conversations with Kitten have been brief and I have even refused calls from dignitaries such as my mother as I expend my energy trying to stay comfortable.  Although untimely, I have also been doing a bare minimum of work to help pass over my responsibilities and ensure a successful start and finish to certain projects.

The new drug has acted to quell the acidic gastric problems that I was having.  It was clearly a mistake to be using the oral morphine to quell the pain rather than wondering what was causing it, but I thought that the pain  was just the stent settling down.  It is often difficult to pinpoint the issues when there is more than one thing going on.

My skirmish with Notoplip last night was typical of our humour and reminds me of when we shared a house in our twenties.   It was somewhat ironic that we rented it as a bachelor pad and we both settled into relationships within a few months of being there.  Our first night there was about as "lads" as it gets.  It was a Thursday, so we went out clubbing and got hammered coming home at three a.m.  Before we went out we started on booze that we had ready for Friday evening, which included a crate of Becks, home made vodka jellies and a bottle of brandy and we continued after we got home

Some time later Notoplip decided it would be a good idea to tell me that I couldn't hurt him if I tried and invited me to fight him.  He wanted me to throw punches at him whilst his weapon of choice was to disarm me and then squash me by throwing me on the floor, laying on top of me and saying "you can't move little man can you?" (that's the link to last night's humour).

In those days I weighed about 11st and him about 14st, both fit and both healthy despite our social activities as I was a regular gym goer and him a footballer.

The evening ended with him holding me up against the wall saying "you can't hurt me little man - throw your best punch", so he put me down and I did.  You have to realise that this was friends being drunk and probably a bit of our animal sides coming out in territory marking.

I threw the punch and knocked one of his teeth out.  It was some kind of denture.  The ones that sit on a peg.  We spent some time finding it before deciding that it was time to retire to the privacy of our own rooms with him congratulating me on the punch.

The next morning my hand was swelled up like a balloon and I paid a visit to Barts Accident and Emergency in central London.  In the evening a group of us went clubbing, me with my arm in a sling whilst the group of us spent a lot of time on our hands and knees looking for Notoplip's tooth which kept on falling out.

I guess that story will resonate with the chaps more than the lasses who will be shaking their heads.  It was twenty years ago though.

Resurfacing

In case you haven't guessed, I have had a tough week being under the weather.

The whole country has been under a big snowy blanket and I have been under a big white duvet.

It is likely that my problems have been largely caused by medication and it would be good to think that is the case.

There is one drug that I have overlooked taking regularly because it makes me sick and, in combination with the stent, it may be at the root of my ills.  After discussions with the Marsden and my GP we have changed the drug, so I will find out over the next couple of days whether things improve. I hope that they do because I have been pretty useless since Monday afternoon.  Eating has been a very nervous affair and it has been difficult to keep anything down, hence I have been very weak.

Even my mother has been notable by the lack of phone calls as she opts to give me space to recover, but not so Notoplip.  He has been ringing me on his drive home through the snow every evening culminating in this evening when there was a loud bang on my bedroom window.

I knew that the kids were over at neighbours and assumed that they were being a bit naughty in trying to get my attention.  Then there was the second, third and fourth snowballs and I got up and shouted out of the window like a fish wife.  Of course, it was him and the kids.

He came up to see me and lay down on the bed next to me (all 6'1" and 17st) and said to me "You are feeling really weak and tired, aren't you".  I nodded whilst looking as poorly as possible.  "I could shag you now was his reply".  "I could lay on top of you and you wouldn't be able to move".

That's about all I needed and it made me laugh (hurting my beaten up ribs), so we just sat there talking the usual unprintable rubbish for the next hour.

I've got some of the new medication down and eaten a little and am hoping for a better day tomorrow and also hoping to avoid coming into contact with any more sexual deviants.  It's bad enough keeping my own company.

No-Top-Lip

A number of people who read the blog can't get their head around the name "Notoplip" because they are reading it as "Not-op-lip".  Well I have now spelled it out and it is self-explanatory that his he is lacking in the upper lip department.  As I have mentioned on a number of occasions, I am not particularly gifted in this area either hence my suggestion that I might get two for one collagen implants for his birthday.

I have know Notoplip since 1991.  It was at this time that the last of my single friends  "Eddie Cruise" decided to go on an around the world trip.  I was invited to go with him, but travelling has never really interested me.  It's not something that I dislike and I enjoy holidays and different environments but I have never really had the urge to go on voyages of exploration.  I suppose that I have always believed that there is plenty that you can discover right under you nose.  One of my greatest discoveries took place when looking at my feet and a paving stone in my favourite Ibiza night club.  I pondered for moment whilst on my five month visit and decided that I missed Kitten and needed to be with her and that was the precursor to marriage and two children.  Of course, I didn't go home to her but simply conducted a weekend trip to old blighty and exported her to Ibiza

Continuing with the Eddie Cruise" theme;  Eddie Cruise" is so called because when we were in our twenties women regularly said to him "you look like Eddie Kidd" or "you look like Tom Cruise".  Naturally, he was extremely humble and never thought to mention this to anyone else.

So, Eddie Cruise was the last of the line of friends such as Ibanez Man, Car Crash, Mark the Shark and Lights On who had travelled from my school days or my late teenage days of drinking by the Kingston Riverside and had settled down or had moved on.

Eddie Cruise suggested that I take his job working in a night club bar when he left and that is when I met Notoplip and co.  Notoplip had been lodging at Taggot's (Flying Squad) and Eddie Cruise had been there too.  The common bond with these chaps was football, all being players.

It was through meeting Notoplip and Taggot that I developed a circle of friends that I would socialise with for many years and all bar one of who I still see regularly.  There were five of us who used to cause mayhem wherever we went and Kitten described us as being like "a circus coming to town".  She, like many others who had made similar observations, was describing us from the vantage point of being behind a bar in which we were drinking.

There is Notoplip, Billy The Fish,  DA Decorator and Bum Nose as well as myself Swordfish.

I could write realms (as could the News of the World) on our exploits, but it is suffice to say that these friends have proved to be worth their weight in gold to me throughout my 20's and 30's up until and including these difficult days.

I am still in touch with my old friends and I have met many other great friends along the way.  The bulk of my socialising though revolves around the friends I met in my twenties and Notoplip and Sushi have obviously been particularly close at hand during recent times.

It is always reassuring that when you have had a very difficult day like I have today that there is someone who is going to ring you up and take the piss out of you whilst also understanding your position.  It is not a role that a mother or a wife can assume.

A Difficult Twenty Four Hours

Apart from having a very disappointed Mrs Swordfish (aka Kitten), who was all glammed up and ready for the Strictly Christmas special it has also been a physically difficult twenty four hours.

The milkshake compounds that I have been using for two months are suddenly not agreeing with me and the last day has not been nice. Unsurprisingly I have stopped using them and am now consuming a few gentle calories.

It is like going back to square one.  I have gradually improved due to the stent over the last couple of weeks but now I barely feel better than when I was in hospital.  I was due in work today to talk with my Managing Director, Sam the Eagle and the Chief Executive Officer about the route forward work wise, but I had to cancel. In my condition and with the snow there was no way of making it in and these conversations are best held in person rather than conference call.  I was also due to meet with the ex-managing director before he resumes his "life of Reilly" as a ski instructor in Europe later this week.

At these times it is important to take it as easy as possible and I have retired to my specially kitted out bedroom with TV on and iPhone at hand.  I remember when my grandfather was bedridden and my nan had intercoms for him to communicate his needs.  My sister and I used to wait all day for the opportunity to use the intercoms and also to take his food through to him.  Just substitute mobile phones for intercoms!

The Empire Strikes Back

I was busy getting ready for the Strictly Come Dancing trip when this disease demonstrated capably why it is called the "Big C".

It is a gastric cancer that I have at the junction of the stomach at the oesophagus and the stomach.  Problems at the upper end with food are common place, but not worth describing in detail everyday because it would make the blog unreadable.

Today, the disease mounted a double pronged attack on me a quarter of an hour before I was due to leave and that was that.  I spent the next two hours recovering through sleep and I missed both the opportunity to greet Brucie with a "Good game, good game" and also the opportunity to tell Gavin Henson to stop being a "big Jessie" and concentrate on working to getting the Wales rugby jersey on again.

My thanks to Mr and Mrs Paul the Banker for the opportunity and I am just sorry that I wasn't able to take it.

Living with this disease is a day by day existence where you are constantly striving to keep your balance on a tightrope.  You never know when an injudicious hand will reach out and shake you off and you don't know what the damage will be each time you fall.

Strictly Come Dancing Christmas Special and the Barclays Board

"Paul the Banker" and his good lady wife were due to attend the recording of the Strictly Come Dancing Christmas special this evening, but the inclement weather has deterred them from making the journey.

Paul has very generously offered the tickets mine and Kitten's way and so Kitten is in for a treat this evening.

I have attended a few television recording sessions before but never with Kitten.  We will be making our way up to White City for about 5:00pm.

It has been very noticeable over the last couple of weeks that there have been more people on the blog and especially that they are not shy in using the comments facility. That is because I chose to widen the circulation of the blog beyond my immediate family and friends to the sole Internet forum that I participate in.

The Internet forum is the Interactive Investor forum and is a financial website.  Although, I have not met these people in the flesh, I have been posting on the forum for three and a half years and so have built up a good understanding with many of them over this time.  A few have even been aware of and have been following the blog since close to its inception, Barcap, Tas Devil is Back and Secret Squirrel being amongst them.

Many thanks to Mr and Mrs Paul the Banker for this evening (there will be a full match report to come) and many thanks to all the board members for their kind messages and words of support.

The Italian Hairdresser

It is certainly good to have a lie in today with both of the children on sleepovers.  A good dose of oramorph before bed time ensured that I only woke once and did not fully awake from the morning misty haze that morphine invokes from the pool of dreams.

So, I have a short novel to start reading (recommended by RigelBB) and the Sunday times before settling down to the Newcastle vs Chelsea match on the box.

I will be joined by the Italian Hairdresser who is one of my few friends to be substantially my junior.

I met the Italian Hairdresser when he was 16 and sweeping floors and making cups fo coffee in Toni and Guy Kingston-upon-Thames.  He is 10 years (less a couple of weeks) younger than me.  We share similar extrovert personalites; for those who like their astrology we are both Leo sun signs.  Over the years we have also had a common bond through house music.

For many years we were acquaintances who got on well whenever we bumped into each other, but there became an extra dimension to our relationship when I went to Ibiza for the summer in 2000.  I knew that the hairdresser loved his clubbing and partying.  At the time I would have been 35 and him 25.  The big night / day in Ibiza for me would be to go to the Manumission party on the Monday night / Tuesday morning and then onto the Space Terrace for the after party all day Tuesday and then onto the party at Bora Bora beach before retiring to my good friend ("HehHehHeh's") bar into the early hours of Wednesday morning.

As I was getting ready at about 11pm on the Monday night I would always ring the hairdresser.  He didn't work Monday's (most hairdressers work Saturdays) so I would always catch him as he was preparing to go to bed knowing that his weekend was coming to an end.  In other words I would stick the sounds on in my Ibicencan flat and start whooping on about how I was well rested and getting ready to go and party for the next thirty or so hours.

You can imagine that this was like sticking a stake through a vampire's heart.  Not much fun for him but superb banter from me.  Of course, I could always ring him from Ses Salinas beach on the Wednesday when I was recovering in 35 degree Celsius heat with Sangria and Calamari if I felt like reopening the wound.

On one particular week I rang his phone and a stranger answered.  He told me that he had the hairdresser's phone and the hairdresser had his and that the Hairdresser was in Ibiza with girlfriend in tow.  To this day I do not know what the phone thing was all about, but I rang the number he gave me and sure enough Italian hairdresser 1 and Italian hairdresser 2 were both staying close by.

It was one of those occasions when all roads lead to Ibiza because this time overlapped with a week that my parents had come out to see me and the "Boxer" was also out with his stag party.  The stag party had the full complement of mates including "Notoplip", "Sound Man" and "Big Boss", so it really was a full on week.

Unfortunately most of the best tales from the next few days are unprintable in a public forum without being self-incriminating but it is enough to say that we had an excellent few days and the Hairdresser and I lay down bonds that have bridged the age gap from now until this day.

Whilst I cannot share most of the humour, I was able to look after him and his now wife to make sure that they had a great holiday.  This was made easier by the fact that I had my convertible BMW with me out there so I went with them to my favourite beaches and clubs.

We had one particularly afternoon on a beach, which goes down in folklore and not for all the right reasons.  We pitched up on Ses Salinas beach at the swankiest of the four beach bars "Malibu".  Getting your footwear right in a hot climate is very important even though I do not generally suffer from smelly feet.  I had taken to wearing plastic soled beach shoes and had been unware of their odour despite having been warned on an earlier visit by Kitten.  The hairdressers had been enquiring about a bad smell for quite a while before pin-pointing my shoes as the culprits.  We were in fits of laughter because they really were bad and it was quite amazing that I had not noticed that I had been walking around in smelly shoes for quite some time.  No amount of rinsing them in the sea would cure them and we resorted to burying them in the sand until we left.

Perhaps the most unusual event of our chilled out day (apparently the hairdressers' last before returning home) was one of those coincidences that you wonder where they come from.  The hairdresser and I had been sharing some of our favourite meditteranean "rolled up cigarettes" and were engaging our imaginations.  The Malibu beach bar is not the best beach bar on the beach because it veers towards the pretentious whereas the Jockey Club further down captures the vibe better.

You see waiters coming down onto the beach and delivery drinks to the punters with their tea-towels over their upstretched arms that are carrying the drinks.  The sea is littered power boats, yachts and some of them extremely grandiose.  Consider the Lady Moura that was a frequent visitor to the beach whilst I was out there.

As Italian hairdresser and I were engaging our imaginations we noticed a motorised dingy at the water's edge and we speculated that it would be amazing if one of the waiter's came down from the Malibu resplendent with drinks and tea-towel, started the motor and hot-footed it out ot one of the nearby power-boats or yachts.  No sooner had we finished our sentence than a waiter came out of the bar, down to the water's edge, started the motor and hot-footed it out to a nearby powerboat. 

I had been to the beach several times and had not seen this happen before, probably because it was early season.  It came to be a common sight in the height of the summer but, at the time, Italian Hairdresser and I were quite taken aback.  So much so that we both gazed intently at our "rolled up cigarette", simultaneously threw our gaze to the waiter in the dinghy, back to the "rolled up cigaretted" then back to each others incredulous faces and then burst out laughing.  "Good sheeeeet, huh".

Of course this was Italian Hairdressers' penultimate day, or so he claimed.  Suffice to say that hairdresser's must have scissors because they are not the sharpest tools in the box themselves (I jest).  It had turned out that their apartments were only a couple of hundred metres from where I was staying and, no sooner had I dropped them off than Italian Hairdresser was ringing me and showing his tender years by his blind panic.

"Swordfish" they have chucked all of our stuff out of the apartment in black bags.  It took me a couple of minutes to calm him down and a couple of minutes to work out that he was returning to London that day and had not checked out of his room.  He had simply assumed a date based on number of nights and had not counted the first, nor checked his tickets.  He was still trying to justify his position despite the weight of evidence being obvious to the most supportive of bystanders.

A bit more cool headedness and I worked out that there was still and hour plus until his flight.  I mulle dhtis over whilst he panicked that the airport transport had already left.  So, hood down and plastic bags unpacked into suitcases we headed over the San Jose hills to Eivissa airport where a 30 minute pre-flight arrival is good enough for those in the know.

As, I said the best stories I cannot print here but that gives some insight into how I know Italian man and his good lady wife.

Mash Up

The wonderful soup of the Crazy Frog has delayed me in attempting something more solid, but tonight was the night.

I had a small plate of very creamy mash before we went out and it travelled fine.

Next stop "mash and mince" again.

The more variety that I get get the better, but it must be said that I already feel much much better physically than a couple of weeks ago.

London Boulevard

It will be nice to do something normal tonight, so I am taking Kitten out on a date to the pictures.

We are going to see the gangster flick London Boulevard starring Ray Winstone at Wimbledon and I hasten to add that the choice of film is hers;  I am not complaining though.

Chances to go out without the children are few and far between so we will be sure to make the most of it.

Feeling Good

I was able to get myself ready to go to watch Huffty play football this morning, such are the benefits of the stent and eating being so much easier.  He was pleased to win 4-2 and also to receive man of the match.

Boogle is out of the frame this weekend as she has not one but two sleepovers.  One last night and another tonight at Lance Corporal's house with her daughter Pocahontas.  My daughter is growing up!  I have not been able to be as involved as I would like with Boogle recently because our shared activity was ice-skating.  I will have to wait for further improvement or think of another channel in which to spend real quality time with my daughter.  The obvious one is to get her busy on my DJ decks as she is always hankering after some time on them.

Huffty, also has a sleepover at the Crazy Frog's house tonight  with her son Frog Leg 1.  This means that Kitten and I have the evening to ourselves.  I am not sure what we will doing yet, but I guess we cannot do anything until after the Wales vs New Zealand rugby match :-)

It will be lovely to have a free evening together though, so I will see what floats Kitten's boat.

Meanwhile it is time to turn our thoughts to Christmas.  We haven't done so far for obvious reasons but there isn't any reason why this one can't be a really good one.  Something tells me that the children are going to be spoilt rotten!

Love is the Chosen Currency

Apart from coming to terms with the physical challenges of the last week the most important item on the agenda has been to determine how we move forward.

What is so difficult is that although I know that my disease has progressed substantially over the last short period I do not know how long I will be here for and what degree of physical deterioriation there will be and over what time period.

I have to be optimistic but I also have to get my house in order and front load everything because one has to assume that my I will be physically better at the beginning of the journey.

Many people have asked me about things that I would like to do and I am being perfectly honest when I say that there isn't really much that I want to do.  The reason for this is that the things that have always been special to me are shared and often spontaneous moments rather than planned experiences.  However, as I am feeling better each day I realise that planning and sharing experiences will be very worthwhile.

I have always been a loving and caring person, but that isn't necessarily immediately noticeable.  Anger and perceived injustice have always been huge driving forces for me and without them I would be completely bone idle. Of course, I have worked to smooth my personality as I have got older but I have always been someone who reflects and listens but also someone who appears to be very opinionated and preferring to talk when in the moment.

The point of this ramble is that I somehow feel released from my life-long personality challenges.  I know that everyone is on my side and the generosity of spirit is palpable.  The comments on the blog (from those  not frightened of computers), the phone calls, text messages, emails and visits all make me feel warm and keep my spirit high.  The currency that I am dealing in is no longer the struggle of the provider and striver it now becomes the gift of being able to share my love.

I have been busying myself all week getting my head around the logistics of the future and there will be both work and financial conversations taking place next week.  If you told me for definite that I had three months to live then  I would only consider working in a capacity to help hand over my responsibilities, but otherwise there needs to be a balance struck.  After all we have young children who benefit from the routine of going to school each day and the general stability that family life affords them.

If there are things that I would like to do for myself then they are simple things like going to a concert or show at the Albert Hall.  I view places like the Albert Hall as places of great spirit and I like the fact that it is circular.  To witness something in the round there would be the ultimate.  Similarly, I have not been to the Globe theatre, but that will have to wait until April as it is now closed for the winter.  When considering other more exotic things then my physical condition must also be brought into consideration.  I am still in reasonable nick but heavy physical exercise is out of the question.
 
Then it comes to the main agenda, which is family and friends.  The focus must start with children, Kitten and the parents and then my close family and close friends.  As my children are still young it is less important to me to focus on events than it is to leave them with a feeling of who I am.   Whilst I say that events are less important they are still pivotal and a holiday would be top of most peoples' agenda.  There is perhaps a limit to what I can do because being abroad and being caught by the condition would be a bad place to be.  The travelling would be very difficult too, especially as we are now in the winter months which narrows the options if looking for sun.  There are other options to consider though.

What I would really like to do is to live a relaxed but active life and it is far easier to be relaxed when the veil of hope provided by medical treatment has been removed.  In fact I wish that I had been able to live with such a mindset throughout my adult life.  I guess that we all struggle and some level though and that must be considered healthy, otherwise we are not motivated to move forward.

My personality will not change substantially, it is the  skin which I have grown into.  The humour will be as dark and acerbic as usual, but the love that I feel for life and for people can now take a more prominent position on the stage.  I fail to see any negatives in that.

Autumnal Walk With Kitten

Today is a crisp but beautifully sunny day, so I suggested to Kitten that we take a walk in Richmond Park.

The Pen Ponds is my favourite area for walking and it brings the best out of the autumn gold.

There was ice on the ponds today and you can see the birds standing upon it.

At this point my attitude is very much subject to a paradigm shift.  When I went on this walk a few months earlier I was totally wrapped up in the mindset of getting myself better.  Now I feel more relaxed and able to enjoy the walk, the day and Kitten's company for what it is.  Only the pain from the stent throws a bit of a shadow over the light but that is all manageable.

There was lots to watch today including a charge of deer across the park the speed at which I don't think I have witnessed before.  My camera is not good enough to the capture the detail, so I didn't even bother trying.  However, the view is worth showing for its own sake as you look to the Sheen gate of the park from the Pen Ponds.