A Different Perspective

I have used the same picture of the Welsh mountain Cadair Idris many times on my blog to illustrate the concept of my journey, so it is time for a different one.

I have mentioned that I intend to walk the mountain when I am better (with anyone who cares to join me), my last and only prior visit being about 1980.

In 1980 I walked it with my uncle (mother's brother) Gandalf, his wife Bee and her brother "Beard" whilst on holiday in North Wales.  What I didn't know, but have since learned, is that the mountain has a special place in the hearts of another of my mother's brothers "The Butcher" and his wife "Mrs Butcher".

Click on the picture to see it in all its glory.  I am especially drawn to the reflective quality of the lake in this picture.

It seems that Mr and Mrs Butcher are regular visitors to the village at the foot of Cadair Idris and they have taken this picture whilst staying there last weekend for their Ruby wedding anniversary.  So, firstly I hope that you both had a lovely anniversary and  secondly, thanks for letting us share your view of the mountain.  Perhaps I should say "thanks for giving us a 'butcher's'" (cockney rhyming slang - google it, if you don't understand!).

Whilst there is a certain poetry about the picture there is a certain poetry about the fact that the butcher plied his trade for many years whilst 2 of his 3 siblings were vegetarians.  He also holds the honour on my mam's side of being the only one of the siblings who isn't coeliac and it is a good job too because he is mightly attached to the odd slice of cake and a bit of trifle.

I haven't really mentioned my family in Wales much but there is a strong relationship with all of my mother's side and also with some members of my father's side - my father's family is a large and sprawling family. 

Despite the fact that I have lived in London since I was six, we have always been regular vistors back.  Also the fact that and my mother and father are the eldest of both their families means that during my years in Wales my uncles and aunties felt like older brothers and sisters.

There has been a lot of support for me over this recent period emanating from the family and my thanks are expressed for it.

Lindylu, Yorkshire boy and Gandalf and Bee are marked with icons on the blog, but The butcher (who incidentally also likes to bake - I wonder if he makes candlesticks too?) is also keeping tabs on me, presumably sitting at his computer with a nice slice of fruit cake.  Of course, I speak with them too and my mother is a natural conduit.

Family has always been important to me and, whilst I have lived in London for a long time my roots are with my family.

Special mention to all their families and the magic coat and arctic fox clans too.

Weighty Issues

So, at the end of last summer I decided that I was looking "lardy" at about 12st 8lb and I set a target of 11st 2lb which I hit before Christmas.

I held the weight there but when I was diagnosed I was told that I had to put on weight for two reasons

1. Because I would not be able to eat properly immediately after the operation and would likely loose at least half a stone (possibly a stone)
2. Because my stomach would be much smaller after the operation and I would find it hard to put on weight

I was told to eat anything and not to worry about the quality of the food.  I assume that this was because they know that it is difficult to eat specific foods when you are on chemotherapy.

Personally, I thought this to be bad advice and took it with a "pinch of salt". So, I kept the base of my diet healthy but then ate what I liked. 

The end result was that I got up to 12st and then started to think I might quickly shoot up a lot more if I carried on. So, when I finished the chemo, I started to ease back and thought I would maintain the weight.  After all, loss of one stone would take me back to 11st..

Then they told me that I wouldn't be having the operation, which left me having put on a stone for no reason having deliberately taken it off in the autumn of last year.

I decided to lose weight and hit a median weight of 11 and a half stone when I restarted chemotherapy.

I've lost five pounds in the first week and so am almost on target, but today I was told to maintain my weight because the radiotherapy is now prepared around my current body shape.

What a load of bother.

More of the Medical

Whilst I was at the Marsden today for the preparatory radiotherapy scans they also organised my first radiotherapy appointment.

My first appointment will be on the same day as my next chemotherapy session, which is Wednesday 28th July.

They initially presented me with a 9:30am appointment, which is the same time as I start the chemotherapy.  Whilst that isn't possible they have still arranged for me to have the radiotherapy whilst I am having the chemotherapy, so that I don't have to go to the hospital twice in the same day.

What this means is that whilst I have the chemotherapy dripping into me, I will have to wheel my little "chemo trolley" through to radiotherapy and be smashed by both simultaneously.

Mmmmmmmmm nice.  I'm looking forward to that one!

Scanning Trial

Yesterday I visited the hospital to be invited to participate in a trial.

This time there are no drugs involved in the trial rather it is the pioneering of a a new type of scanner.

Radiotherapy involves delivering X-Rays to the tumour.  The process must be accurate to target the tumour but a margin must be left to ensure that the targe is hit allowing for the fact that the tumour moves as the patient breathes.

The preparation process usually involves a CT Scan which provides a cross sectional image of the body; much like a sliced loaf of bread.

The new scanner gives a 4D image much like a video showing the movement.

I may benefit a little from the trial but, like all trials, the main beneficiaries will be those who a receive the treatment after the results of the trial are reviewed.

Today I  received both the standard scan and the 4D scan and I now have three pin-prick sized tattoos so that they know how to position me when I start radiotherapy treatment on the 28th.

Boogle Strikes a Chord

Kitten had a conversation with one of the teaching assistants at school yesterday afternoon.

Because it is nearing end of the year the children in Boogle's class were asked about their hopes and desires for the next year.

Many said what you would expect from 8 and 9 year old children e.g. a nice summer or a Xbox.

Boogle answered "for my dad to get better".

Like I say, I don't need any motivation, it is already there.  Overcoming this aggressive disease would make me the best role model for my children and allow me to return them to what they deserve;  a carefree childhood.

Sea Change

When you are diagnosed with cancer there is a lot to take in both emotionally and from the depth and breadth of the treatments and diagnostics that you have to go through.

However, there comes a time in any process where the "new world" starts to become the norm.  I feel that I am close to that point now.

There is value in being driven and in being passionate about recovery and it is important not to let that passion diminish.  It is also important to enjoy your life without your illness affecting your every moment.  It is my opinion that it is also healthy to be able to focus away from the illness and still live and breathe your life.

The illness is, of course, firmly established as part of each and every day because of the constant battery of appointments, medicines and changed working routine.  However, I have endeavoured from the very start to try and maintain normal life as much as is reasonably possible.

Although I am at the start of a critical few weeks I feel relaxed again; it should be remembered though that the last time I made such a claim was the very day my hope of immediate operation was withdrawn.  Incidentally, the operation was scheduled to have taken place today.

Being ill does not only present obstacles, it also presents opportunties.  Most notably in presents opportunties for personal growth as the emotional challenges can be harsh and demanding.

On several occasions I have made reference to the more esoteric pathway I have created for myself during this period.  I have continued to pursue avenues such as meditation, chi-kung and more simple fare like writing the blog (cathartic in its own right).  These activities have provided respite and growth through an evolving framework and help me in very real, practical and tangible ways.

I usually practice meditation as part of chi-kung and it is in invaluable in keeping me in a "go forward" frame of mind.  The mediations I perform are simple but are my own and have been evolved from my past and recent experience into dynamic frameworks that act as "drills".  The process of repetition is strengthening in its own right.

There are many parallels that can be drawn between working with meditation and working with music because the process is always evolving and there are tangible and measurable results.  When I was DJing I would experiment and then evolve what I liked into someting tangible and set. I would then perform and take those set pieces and experiment with them again in order to make them dynamic. The music would constantly change with new records the dynamics of the night and the audience and my own feelings, but always moving forward.  So it is with meditation.

The meditation acts as a bedrock for me and a reference point on the journey through the illness without needing to be directly linked.  It's primary benefit, like music is that it is a medium which does not need words but works on a different and deeper level, a soul level.

I am not drawn to phrases such as "positive thinking" but what I do falls into that sphere without being able to be considered as blind optimism.

My point is that we all wish to fulfil our dreams and aspirations but the most essential commodity is to grow and become better people.  The illness presents me with a passage through which to travel as well as immediate and sometimes harsh challenges.

Given the levels of treatment that I will now be subjected to, it is clear that there will be lasting damage to my body beyond that of a major operation and that I cannot guarantee my successful emergence from the disease.

What I can do is to remain confident about the outcome and, whilst I do that, I can continue to work to be a better man, husband and father.

Who knows; sometime in the future I may even be willing to put a duvet cover on!

Duvet duvet you're so groovey!

Many of you know that Swordfish has a great aversion to DIY, house work, gardening and general domestic duties but even I was was amazed - and that's an understatement - by his antics last night.

Perhaps I should say lack of antics.

With the weather being so good the bed linen was washed, dried and aired all in one day. No one likes to re-make the bed and the huge duvet cover is always a battle. I often find myself lost in the volumes of material.

Old Sworders had a long day at work and the first week of chemotherapy is always difficult, so he announced he was off to bed but asked me where was the duvet. 'In the bedroom as always' I replied knowing it had no cover on it and knowing he was prompting me subtly to put a cover on it.

I followed up a few minutes later and entered the room to be confronted by Swordfish, in his pants, laying on the bed without any covers and the quilt still folded on the floor.

He smiled, I smiled back - kind of!

I picked up the quilt and placed it on the bed. With him still on it you understand.

He didn't move. Actually, he did raise his arms.

He continued to smile as I struggled with the cover and the subsequent shaking, fluffing and puffing of the quilt.

The process took a good 3 minutes and he just lay there and smiled, well, smirked I think.

I grimaced back.

To be honest, it was quite funny and mildly entertaining and I almost laughed but couldn't.

Wouldn't!
Never!

Terra Firma

After the malaise of an unwanted early morning start I had some breakfast, went back to bed and managed to regain all the sleep that I had "lost".

The effect was dramatic as it now feels like I am more or less through those first few nasty days.

It's not like returning to "normal" but everything feels easier and much more in control.

I have just done half an hour chi-kung in the garden and the ability to stay still, relaxed, focused and controlled for that length of time gives a confidence of me being back in charge rather than the drugs.

In reality not a lot has changed but the world looks like a completely different place to the one at 6:30 this morning. I've experienced similar moments in all of the cycles of chemotherapy that I have been through and they have all led to feeling progressively better.

I assume that is just the way it works for me.

Simple Example of the Effect of Chemotherapy

Before explaining what I am doing blogging at 6:30am on a Sunday morning I thought that I would relate an experience that defines how disorienting the first few days of chemotherapy can be.

Because of the hot weather Kitten has stocked up on some ices for the kids.

In the heat of yesterday she offered me a Magnum lolly and my first thought was "mmmmmm...cold", my second was accompanied by a shift of the head to side, a squirming of the face and the taste of synthetic chemotherapy and a picture of the intravenous drip bag from whence it came.

Kitten perserved.  "What about a Fruit Pastilles lolly".  Now we are talking, I thought.  I could see it in my mind's eye, suspended in mid-air with its layers of different colour and the sight of frosty ice defying the heat. 

I could taste the green and the purple and the orange and then, like a battering ram, the synthetic taste of chemo.  The two perspectives slogged it out with one another for a few seconds and the chemo battering ram smashed the illusion.

Unless the kids get there first then the lolly still has my name on it and, in another moment, the lolly would have won but it gives a feeling of what the first few days of a cycle can be like.  The example of something that is so desirable in the situation being overrun by the effect of the chemotherapy gives a window into what can happen to simple feelings and choices and how difficult it can be to have any direction.

So, what on earth am I doing blogging at 6:30am on Sunday morning?

Well hopefully I will be going back to bed to sleep in a moment but I have been awake since 4:00am and got fed up of laying in bed wide awake.

I know that for many people waking in the night is a regular occurrence, but I am generally a good and heavy sleeper.

Part of the problem is intravenous steriod injection and subsequent oral intake (for the first few days).  The effect seems to kick in a few days later.

Things to Do

Chemotherapy or no chemotherapy, there are always things to do.

I have been busy working during the latter part of the week but had to call the shifts a bit short due to the heat and its effect.  Concentration is fairly limited until after the first few days too!

I did get out with the Boogle this morning, to get her back into ice-skating lessons.  Our regular rink in North London is opening again in a week or so but I believe that there aren't any lessons available until the autumn.  So, I have got Boogle a series of six lessons booked at our closest rink.

I had a skate with her this morning and the mother-in-law came along, as a spectator too.  All this whilst Kitten took Huffty to football.

As the in-laws have only previously been referred to collectively as "The Outlaws" (a pun on the film "The Outlaw Josey Wales" and "The in-laws from North Wales"), Kitten's mum should be given a singular term of address.  I will call her  "Kitey" but the explanation for that term is beyond the scope of the blog; as is the enigma, herself.

Of course, I do Kitey a great disservice whislt she has been doing wonders for our little family over the last week.  Kitey has flighted a weight off Kitten's shoulders this week, making the house run smoothly, entertaining the kids and helping in all departments.  I hope that she has enjoyed her stay.

At least I didn't hospitalise her this morning on our walk to the train station.  It is a ten minute walk for me in the morning, but I allowed an extra five minutes to allow for the heat and the company.  With Boogle complaining and stopping for everything on the way I had to go ahead an buy tickets and Kitey looked particularly wacked by the time we got on the train.  Maybe, I should give it twenty minutes if there is a next time!

I have had better sessions with Boogle ice-skating because a dad a few days into chemo and a daughter who is exhausted from staying up for an awards ceremony she attended the previous night is not a great combination.

Sometimes you just have to make the effort and the reward was seeing her confidence flow back when we got around to her lesson at midday.

I also bumped into a chap ("Tigger" - due to his continual jumping style) who we saw regularly at our central London winter venue.  Thanks for Boogle's sunglasses, Tigger!

Breathing a little confidence into her makes the world of difference.  On reflection, not much different to her dad or, I guess, most people.