Developments…

Spoke with the thoracic surgeons secretary this morning and she has informed me that the Neuro-Surgeon is currently in India and his secretary is off till Monday. So there is nothing that can develop until after the weekend. I could be in the outpatients on Tuesday if the neurosurgeon can have a look at the CT scan over in India.

Still Waiting…

Written at 5.30pm (on my sofa!)

Well, that was disappointing…

Pretty much a waste of time.

Sometimes people say “no news is good news” well not today.  Essentially, after about an hour of waiting in a packed out waiting room, the registrar called me into his office.  He sat me down, asked how I was doing, then proceeded to tell me the the CT scan I had had not yet been viewed by the Neurosurgeon (N.S.) and without his opinion there can be no decision made regarding my surgery.

There are no words to describe how frustrated and let down we are.  This date had been a beacon, I thought I would be told some definite dates or timescales but rather than that I have been told that, until the N.S. comments on the scan (that his team arranged for on the 3rd Jan) there can be no further action taken.  We are again left in limbo-land with no clear date for anything.

I am left with an open appointment with the Thoracic surgical team so as soon as they get the green light I will be seen in the next clinic (which will be the following Tuesday) or I will need to see the N.S. team in an outpatients appointment.  From there, who knows – maybe they will have got their act together but I am no longer expecting anything to be straight forward.  I could be called in next Tuesday, I could be called in 3 weeks time, who knows…

What I do know is that there are, basically 3 options.

1. The N.S. sees the CT scan and decides that the surgery needs his input.  If this is the case then it will be either
   • The N.S. sitting in on the operation (scrubbed up and sipping coffee…?)and making sure that nothing goes wrong.  This would mean that the surgery will be held at St. James’
   • The N.S. leads the operation with assistance from the Thoracic team.  This would mean that the surgery will be at the LGI
2. The N.S. sees the CT scan and decides that he doesn’t need to be involved in the surgery and the surgery will be done without his support at St. James’s
3. The N.S. sees the CT scan and decides that surgery is not the best option going forward.  Yes, you read it correctly, there is now the (small) possibility that surgery is potentially not going to happen.

Now you know what I know.  The N.S. is holding all the cards and seems like he isn’t really looking at them.  His team asked for the CT scan in early Jan and now as yet has not seen this scan (although the Thoracic team have it on their system).

The registrar was pleasant enough, he said that if it were him he would “…not be happy…”  in fact he said;

I seem to have to say that quite a lot…

I have now got to Sit and Wait!  I will be contacting the thoracic secretary each week (or every other day!) to see if they have any further information, although they have said that the secretary should contact me as soon as she hears anything (through what faith I have in that promise is minimal).

The treadmill seems to be circular and I’m getting dizzy, confused and disorientated.  My stress levels are causing my back to be bad and there seems to be nothing I can do to get this process moving forward.  All I can do is hope that tomorrow something has shifted.

If you pray, then please pray that;

• The N.S. gets his arse into gear (yes, can you can say the word “arse” in a prayer) and looks at the CT scan and advises the thoracic team.
• My pain and stress levels lower.
• We find some level of peace in the process.

I’ll be heading off the the Driving range tomorrow with a friend and I’ll be taking my frustration out there.  Hopefully I will have cleared my head enough to be able to get back to work on Thursday, although my diary will need to stay empty for next week until Tuesday comes, as I could get a call on the Monday or Tuesday to call me in to possibly get the ball rolling again.

Good job my faith is in something other than the NHS Empire…

Sit and Wait

Written at 1.30pm 24/01/2012 (waiting for an outpatients appointment)

It’s a waiting game when you are a ‘non-emergency’ case, this time round the initial visit to the GP to complain of increased pain levels was in the early summer of 2010.  After that I waited for a referral to the Pain ‘Specialist’ for a few months.  Then I waited for another couple of months for some treatment.  6 months later I missed my appointment and it was rescheduled after another couple of months.  After the initial diagnosis of this doctor I had to pressure him into giving me an answer and a few months later I had an MRI scan.  A couple of months later a sudden increase in speed due to the ‘discovery’ and now after one out patients appointment and a CT scan, I find myself sitting and waiting.

I have lots of questions, some will probably not be answered, others better be!  However I can’t escape the feeling of being on a slow moving treadmill hoping for a sudden burst that will get this over and done with and some acceleration is well overdue.

It’s not just the appointments and visits to the doctor that seem painfully slow, it the fact that everything goes on hold.  My work diary is sparse and has been cleared as of next week, who knows I might be in hospital on Monday.  That’s the issue, the unknown, the inability to commit, the lack of understanding what is wrong, the waiting. Not just for work but for every aspect of my life.  I can’t book anything in, I feel, essentially, crippled.

There is something to gain from the whole process.  I’m still looking for the real treasures that this process will unveil.  For now it’s developing patience (I hope), I could have just given up in November and quit, let the diagnosis win.  I refuse that option wholeheartedly.  The only way to face it all is with a smile on my face more often than a tear in my eye.  I have been through a tough 8 and a half years, with some really dark times, I have come through them now, yet I know that the road I’m on means there is more darkness on its way.  I keep telling myself, “I’ve come through it once, surely I can do it again” however that statement does have the slight suggestion of being a question!

For now, I wait. Wait for my name to be called, so that I can at least find an answer for some of the questions I have…?!

Update Blog

Hi guys, firstly I want to say a massive thank you to those of you who have been supporting and encouraging me me through reading and engaging with this Blog.  It’s a real source of strength for me.

We have made another Blog available with the main purpose being updating on what is happening with regards to various appointments, when I am in hospital and in my recovery.  If you want to subscribe or follow that blog the address is:

http://jonnysbackupdates.wordpress.com/

I will still Blog on this site when I can but this site will be dedicated more to personal perspectives rather than factual information.

Thanks again for your support and encouragement – it’s a source of life to both myself and Gill.

Love you all!

Head Spinning…

Just a quick update…

After going to the GP yesterday I have begun to increase some of my medication to counteract the increase in pain I have had in the past week or so.  This is a reluctant move but, I feel a necessary one as the pain has been difficult to bear in the past week.

The GP has told me to split my Gabapentin into 3 equal daily doses (of 300mg )and increase one of the doses by 100mg every 4 days.  However, after yesterday, I will not follow this advice to the letter.  After taking my first 4pm dose of 300mg I was physically and mentally all over the place.  Within an hour I was feeling completely spaced out and unable to think clearly.  My head was literally spinning and my speech was slow and slurred!

I was supposed to be going to the gym but, as I was unable to walk in a straight line, decided to stay in!   Over night I have had not great sleep and freaky dreams have kept me up.  I still feel a bit ‘woozy’ now at 11.45am the following day!  I have decided to keep my medication at the start and end of the day the same and add in 100mg (rather than 300mg) at about 4pm each day.  I will increase this to 300mg and see what difference this makes to my pain.

I can’t wait to be off these drugs and pain free, whether this is feasible or not I have to hope for it whilst living with and preparing for the fact that the upcoming operation may not be the answer I’m looking for.  One day I’ll be pain and drug free, I know this to be a fact.  But the cold hard facts remain the same!  The Stockdale Paradox gives me a healthy framework for my hope!

Walking in the wind

I am a dog owner (see picture below) and this particular dog brings many joys to my life.

Walking in the wind and rain isn’t one of them.

I’m sure you understand that.  Today was one of those walks, we put it off hoping the wind would ease and the rain clouds empty.  Alas they didn’t so we togged up in thermals, layers and waterproofs and took him.

As we walked round the park there was little point in trying to converse, we had to put our heads down and face the wind.  I regretted going to the gym for the first time in 3 weeks after about 3 minutes of leaving the car.  Rain lashed down, vicious and biting winds slowed us and we struggled round.

It reminded me of my life’s journey these last few years, particularly these past few weeks where I have struggled with much more serious pain in my back.  Sometimes there is little point trying to talk about it, I just have to put my head down and face it.

It’s not easy when pain dominates your life, I have learned in the past 8 years to diminish it’s effect on me and I got to a point where I could pretty well ignore it.  Even though I have pain every day I was able to not let it affect me, like the proverbial water on a ducks back.  The past week particularly has been the worst I have had for a long while, being woken in the night flinching with pain shockwaves in my back and having times throughout the day where I am effectively paralysed with pain are never good times but that’s the reality I’m currently living with.  Somedays are worse than others but this past week has been draining.

I have booked to see my GP on Friday as the pain has worsened so dramatically over the Christmas break, I’m hesitantly  considering increasing my medication.  This would feel like a backward step, maybe a necessary one but backward nonetheless.  I have worked so hard in the past 4 years to reduce my medication so to increase it goes against that flow.  This is not a decision I take lightly, side effects would reappear to some extent and my mind could become more clouded and dull, “…is it worth it?” is the million dollar question!

I’ll say it again, I don’t write posts like these to get any sort of pity or to impress anyone.  I write this to be honest with you.  All too often we don’t tell people how we really feel.

My stock response to the ‘how are you?’ question used to be “OK thanks, how are you?”

Often that was’t the truth and I didn’t really want you to answer honestly as that would have been awkward, especially if you’d said

“…life’s a bit shitty at the moment, thanks for asking!”

I write these posts for myself, just to vent a little and get it out of my system.  Honesty can be a tough experience but can be incredibly valuable.  A bit like walking in the wind.  One of our best friends recently went out and enjoyed some stormy weather in Malham and found it incredibly liberating.  That’s just such a prophetic image to me, letting the storm batter and beat you and just being able to stand there and enjoy it.  There’s a lot of treasure to be found when we face the storm and push through the different barriers it presents.

2012

This is a blog post that outlines some of the thoughts and insights I believe are key for this next year (and beyond).

Here is a post from a guy called Paul Leader regarding 2012 http://3generations.eu/blog/posts this has been really helpful to read through as I have processed what is to come in 2012.  I’m sure that there is lots more good stuff out there!

2011 was a year of massive transition (Egypt, Syria, Lybia, Riots, The Occupy Movements to name a few) where people found a voice and, in some cases, toppled dictators and 2012 is now the beginning of something new.  Not that all transitioning is over but that there has been a shifting throughout 2011 that has created space for something new to emerge.

2012 will bring something new, something to fill the spaces made in 2011, something that we cannot see yet beginning to emerge.  As Paul Leader says

…a joining of the dots… a shape emerging… something being forged…

This means that we need to look to see something become established, this establishing will take longer that this year (maybe even up to 7 years…) and will not be easy, there will need to be a putting down of our own agendas and finding where there is agreement without compromise, for the sake of seeing something new emerge.

Whatever emerges will need to flex, no longer do we need rigid structures that offer immovable barriers that pen us into bureaucratically and deeply flawed systems where there is little room for creativity.  What I am looking for are structures and systems that compliment each other rather than compete, we must stay away from the victim/predator way of thinking and find structures that will enhance what is already there.

On personal levels I believe that we are now entering a time where drifting ends.  Hopes and dreams becoming reality and momentum being ignited where we have felt static.  The beginnings of this will be painful (like childbirth) and dangerous to navigate through but the result beautiful and life giving. People who have been repositioned in 2011 will see the first 2 months of this year  to be key in what they have been repositioned for – thanks to Sally Ann Dyer for this foresight!

Personally, for me, this year is so pregnant with possibility.  An operation (pain and danger) looms in the next few months bringing the possibility of ending the 8 and a half  years I have been reliant on medication.  Surgery is never something i will look forward to but I can see hope within it so I look at it with no fear.  Clarity of mind and senses being released into their fullness is what I look for – something spiritual as well as physical – that’s my hope.

I hope you enjoy the year to come! Something new is being established.

Feelings

There are many and complex feelings I have so here is a description of two that have become well acquainted in these last few years. (It seems I have written in more poetic language today.)
Fear
Some days are clouded by fear, like a fog that blocks the light out. You try to put the full beam on and it just makes it worse. That’s scary. When the pain won’t subside, when it clings on throughout the day, when it wears down and burdens the soul. It’s easy to be fearful on those days.
It’s not just fear of pain. It’s fear of living up to the story, fear that I can’t deal with what is thrown at me and fear that I could crumble beneath it all. The days that make me despair and question if what I have to offer is worth the flesh and bone I live in.

How much pain can I bear before I crumble an fail?

That’s the question that fear asks and sometimes it’s a difficult question to find an answer for.
Hope.
Maybe it’s a fools hope, but it’s hope nonetheless. Looking at the story of the last 8 years gives hope each day. Many a marker has been placed on this journey and at key times what seemed foolish has proven wise.
My faith has changed, the God I know today is not the God I knew yesterday, and this is so linked to my journey that it would be impossible to separate one from the other. What some would call coincidence, I’m increasingly see as divinity breaking through.

How many coincidences do you need to have to start to believe its something else, something other – maybe even something Godly?

The journey ultimately gives me hope.

Hope can cancel out Fear with ease only if I can summon up the courage to look for it.

Planning ahead…

It’s hard to know what the future will look like, or feel like to that matter. Being pain free and off the medication would be incredible but I find it difficult to imagine what that would be like. 8 and a half years is a long time, every day since the initial biopsy I have been on pain killers, as I mentioned in my post the other day the level of pain killing medication went from co-codomol to a list of medications that would knock a horse out!
What will be, will be! If I have to partake of some more pain to fix the problem I have, then so be it. Not that it will be easy. The first time through surgery was tough but I had no concept of what it would be like however now I only have horrific memories to guide me and that is not at all easy to deal with.  It’s easy for people to say things like;

That was the worst case scenario Jonny, it won’t be that bad again…

As well meaning as those comments are they honestly mean very little.  I want to be able to believe them but I don’t think that is a very healthy thing to do.  You see if I don’t prepare for a difficult path then when I get there it will be all the harder to traverse however if I plan for it, then I will be able to cope much better and on the bright side if it’s not as bad as planned for then it will be all the easier to deal with.  I absolutely want the operation to be as successful as possible, with no complications followed by a swift recovery and I don’t think that preparing for the worst is in any way willing that to not be the case. Any sensible person prepares for the worst with the plan being to never engage those plans, that’s all I want to do.

The goal is for me to be off pain killers, pain free and back leading a full life – that’s it plain and simple.  I need to walk down a path to get there, one that has not been easy before.  However, I now know how hard that path can be so I will walk down it knowing full well that, with the help of my amazing family and friends, I managed before and I will manage again.

Bring it on…

A good little christian?

I have always believed in God.  Maybe that was a childhood non-negotiable as my parents were Christians, my dad even became a minister for a while when I was a teenager – not the coolest things your dad can do when you are in the midst of battling through the brutality of school!

I turned out alright, I believed (or thought I believed) all the right things and had become a regular know it all and was climbing the ladder of success in the church realm.  I was on the leadership team of a church congregation in Leeds and played my guitar at the services (like a humble little rock star…?).  I felt I had made it, the ultimate expression of Christianity, on the stage and wowing the crowds.  Becoming a christian celebrity in my own right, or trying to anyway.

You see the thing is, I said all the right things and stood up and sat down at the right times, but my life was not really a reflection of what I projected.  Dogged by this thing called sin, which was like a noose young my neck, I was sure that I would be found out at any moment and be thrown out to the dogs.  The church can be as brutal as the playground and sometimes as childish.  There were times I really thought that I was in a primary school playground and some of the things I saw and heard were so un-church like that it makes me shudder to this day.

I still believe in Jesus, he was (and is) a very radical man.  However I can’t be bothered with those same old meetings anymore, they don’t make sense to me now and probably never will do again.  That doesn’t mean that I was wrong to be there.  At the time it was all I knew.  A bit like we used to think the earth was flat but once we realised it wasn’t, our whole understanding of the world was changed.  Lots of people would probably say I’m not a Christian anymore (and so might I!), it’s their choice to label me in that way and it doesn’t really bother me if they do.  Church has become a dirty word, demonised by human misunderstanding and abuse of power.

When I hear about churches raising funds to save the roof, I shudder, what about the people just down the road who can’t afford to heat their home (if they have one), cook a meal, buy clothes for their children etc… That’s what the church should be raising money for, not a ‘poxy’ roof that needs £150K spending on it to keep the rain out.  When I saw church meetings become slanging matches between traditionalists and innovators that led to hate mail being sent and people having their whole identity tarnished by gossip and slander, it broke my heart that they missed the point of what the Church really is.

The Church has become a big institution and with big things come big issues.  Some ‘churches’ publish how much people have given (or is it tithed?) on the notice board for all to see, as if it’s a competition you need to win.  Other ‘churches’ would not allow a person up the front if they were wearing jeans and a t-shirt!  As for prayer in the ‘House of God’ if it’s not done right you may well be stoned to death.  Isn’t this what Jesus came to challenge, the very thing he came to say was that the

“Kingdom of Heaven is at Hand” Easy to find, easy to touch and easy to grasp…?

Church, for me, clouds that very thing.  Yes, some churches do good things and love the poor and set up good projects.  Some churches work together and put the agenda of the poor first which is great.  However, some church leaders are still a law unto themselves.  Power can corrupt, and church leaders are not exempt from that.

About 7 years ago I decided that I needed to leave ‘church’ in the hope that I might find church, although I refuse call it church because it has become a word that carries too much baggage.  I have been surprised in some of the revelations I have had about God in all of this and I will try to expand on this in the next few days.

I might be labelled as a “Heretic” but a little bit of heresy can be just what is needed, especially if we are to find new ways to understand God.

On Sunday evening a few friends came over to pray for me and Gill and the current situation we are in.  A group of people coming together and supporting their friends when they are in need.  It has been incredibly humbling that so many people have sent messages and commented that they are praying for me (even though some of them don’t carry the label of ‘Christian’).  This last week or so, that has been what I have been looking for.  It’s what I left ‘church’ to find and it was all done by 7.30pm so I could watch a film with my family!  Perfect!