Reality Check…

Well, after another week of pestering and hounding the surgical secretaries I have some news!  It seems to have been incredibly challenging to get 2 surgical teams to communicate with any sort of clarity and, although I have some news, what I have heard today is still rather patchy.

The neurosurgeon has said that he is happy to proceed with the surgery.  This means that I now have an outpatients appointment on the 22nd Feb at 11.30 (which means I’ll probably see the doctor at around 1pm!).  At this appointment I hope to find out more details about things like how the N.S. will be involved in the surgery, where it will take place (St. James or LGI) and various other details.

In these past 3 weeks I have been so focussed the frustrations we have had with the NHS beastie that I now find myself re-facing the reality of surgery.  This is big stuff – I think that, with the distraction of incredibly poor communication on the behalf of the NHS, I forgot that this is all part of a potentially life changing situation.

The reality check has hit me again – I didn’t quite expect it to feel like this.

After the phone call informing me of the progress that had been made there was a sense of relief and a brief period of “lightness” that it was all over and done with.  However, my perspective has now widened out to see the bigger picture.

It’s a bit like being in a traffic jam, you want to just get going but there’s a hold up that you can’t really influence.  When the traffic starts to flow again, you feel a sense of relief before you set your mind to the journey you are on.

The destination is potentially life changing but the path I need to take is not going to be at all easy to navigate.  So tonight I feel the reality of it all again, the fact that things are moving again is really great now all I need to do is remember how to deal with it all.

Embracing the journey…?

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!

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.

Up to now…

Now, nearly 8 and a half years on, I sit on the potential precipice of the journey. Another diagnosis and another bout of surgery.

In all of this journey there have been highs and lows, it seems that, in my case, life has had to be cruel to be kind. The NHS with all its wonder and incredible technology has again thrown up a curve ball and I have another journey to undertake.

18 months ago I went to the GP as the pain in my back had noticeably worsened. I was referred to the Pain Specialist (not a Bond villain!) at the Bradford Royal Infirmary and after a few different interventions an MRI scan was done and last week I was told that there was something on the scan that needed looking at. I had been referred back to the surgeon who did my first surgery in 2003. After a nervous week of mainly lows, with some incredibly humbling support from friends and family, I have now had a meeting with the surgical staff at the hospital. I have been told that I need another major operation to remove whatever is there, it could be another tumour (probably benign with a small chance of it being malignant) or just scar tissue. However it’s complicated by the proximity of the tumour/tissue next to the spine and potentially in the spinal chord, so a neurosurgeon will need to be involved too.

The doctor I saw is hopeful that full recovery, without needing ongoing medication, is possible once the mass has been removed and I have recovered from the surgery. I have now been booked in for a CT scan and will await an outpatients appointment with the neurosurgeon followed by an operation in about 2 months time (i.e. Jan 2012).

This fills me with a mix of emotions, mainly scary ones but I choose to look at this without fear (in my opinion being scared is not the same as being fearful). I can’t say I’m looking forward to more surgery, I feel I have had my fair share of infirmity but nevertheless I must look for the positives. Being pain and drug free is the ultimate destination, I will try to get there whatever the road is I have to take. However when I get there I know that it isn’t the end of the journey, it has to be the beginning – a new beginning, a platform. We always carry the past with us wherever we go, I don’t want to forget it however much I didn’t enjoy the experience I know I am stronger and better for it.

If I had a pill to make it all have never happened I would probably (and only just) take it. We are all a sum of our experiences and I know that my identity is tied up in it all, I’m not defined by it rather, I am now at a place where my identity has given a shape to the experience. It was touch and go at times, but I stand now fully aware that who I am is not what I have experienced rather that experience is a new dimension or depth of me, fully shaped by my identity and that’s how it should and, hopefully always will, be.

More to follow as the journey unfolds. I’ll probably blog about the faith journey I’m on next, so feel free to pass that by if it’s of no interest to you!!!

The drugs don’t work… or do they…?

After the surgery I was put on various different medications.  I was popping pills like nobodies business!  It seemed that every time I saw the doctor he prescribed either more tablets of higher dosages.  When I was referred to the pain clinic the dosages went up even higher.  At the peak I was taking:

• Gabapentin (2400mg a day)
• Tramadol (400mg a day)
• Diclofenac Sodium (150mg a day)
• Amitriptyline (100mg a day)
• And good old faithful Paracetamol(!) (4000mg a day)

At it’s height, the level of pain relief I was on received acclaim from medical professionals whenever I told them the drugs and the dosage it was met with (firstly) disbelief and then, when they realised I wasn’t joking, shock.  I’m no medic but at first when I swallowed the tablets I was kind of worried about it.  At some times when the drugs were going up I had to take up to 18 tablets at a time, I prided myself on doing this all in one go…

…I’m a man, I have to make it a challenge!

All joking aside this level of pain management came at a cost.  The side effects were unreal, when I read the side effect info in the tablet boxes I was able to say “…got that; got that; got that…” It was not unlike collecting the football cards I used to trade on the playground at school – although I wasn’t saying “…need that; need that; need that…”!  The effects of the drugs helped manage the pain, although I would still have pain every day (and still do) but the side effects were shutting me down.  The biggest culprit was and, to a lesser extent now, is the Gabapentin.  The drug was formulated to treat Epilepsy and does it by suppressing all the nerves in your body, including the brain – which is why it is so effective for treating Epileptics.  However this meant that I was unable to interact fully when things were going on.  I would forget what I was saying when mid sentence and when in group conversation by the time I had processed what someone was saying and thought about a response the conversation had moved on and I had missed my opportunity.  This was utterly frustrating and meant that I gave up trying to be involved in conversations.  It felt like I was mentally walking through tar, it was hard work and I wasn’t getting anywhere quickly.  Added to this the effects from the tablets were unreal, some of the side effects I had included;

…drowsiness, tiredness, dizziness, headache, anxiety, memory problems, diarrhoea, constipation (!), dry mouth, weight gain and (get this) back or joint pain – unbelievable, I was taking the bloody things to get rid of back pain not to have more! (I don’t say this to impress, I’m putting this info here to help tell the story).

One of the biggest issues I had with the tablets was memory loss.  When the doses change I have the tendency to completely forget something that is said or that happens.  It’s quite useful if I don’t want to do the washing up, more challenging when I miss appointments for important scans or when in the workplace.

There is also a massive issue if I ever forget to take a dose or run out completely.  Withdrawal from some of these tablets is incredible, i ache all over, my lungs feel like lead weights, my head spins and I am unable to concentrate on anything.

The struggle with drugs is one that I have done battle with over the years. 4 years ago I decided that enough was enough, my quality of life was poor and I still had pain.  I spoke to my GP and we decided that I would try to reduce the medication I was taking.  I was scared at this prospect, I depended on these pills to keep pain at bay and choosing to reduce the medication filled me with anxiety.  However, I had made up my mind so I started to reduce the tablets.  I started with the Gabapentin, slowly we reduced the drugs, over the course of a month I had reduced the medication by 100mg, and I noticed a difference straight away.  2 days after beginning the process someone commented that it was like Jonny was back in the room.  This was all the encouragement I needed, so I persevered and reduced the tablets.  The side effects came to challenge but I wasn’t backing down.  I had become a slave to these little white pills and I was determined to reduce them as far as I possibly could.

Now, 4 years on, I have reduced the medication by over half. My daily doses are;

• Gabapentin (900mg a day)
• Tramadol (200mg a day)
• Diclofenac Sodium (0mg a day)
• Amitriptyline (100mg a day)
• Paracetamol (2000mg a day)

I have more pain but I’d have that rather than live the half-life I lived for nearly 4 years.  It’s a battle and I have to deal with pain daily but I don’t want people thinking that I am anything special for dealing with it, after all, it’s all relative.  Yesterday I had pain and today I have pain and this is how it has been for the past 8 years.  Some people deal with different shit each day they have no food, shelter, love and they are on my doorstep as well as in other parts of this world. I’m fortunate compared to them and I want to love and support them in the same way I have been helped.  I am also lucky because I have amazing, positive and generous people all around me, the support and love I have had and still have humbles me every day.

I’m nothing special, feel free to remind me of that if I ever forget!

8 Years ago…

So here goes, I’m about to start blogging on the challenging and wonderful story I seem to be living through, not because I’m anything special but because all stories need to be shared and my story is the one I know best!

Firstly, I am now blogging on this subject as I have been diagnosed with a second Tumour in my back.  I remain hopeful that this is not as serious as my first tumour however, I feel the need to reflect on my journey this far.  Not to glorify past days or seek pity (that last thing I’m asking for is pity!) but as I try and make sense of the present and the future I must remind myself of the journey I have been on up to now.

Approximately 8 and a half years ago I went to my GP as I was having increasingly sharp shooting pains in my back.  It was something I had been living with since the age of about 10 or 11, that had always been put down to growing pains or bad posture, but it had become so bad I was unable to concentrate at work so I went to the doctor.

It’s the small details that stay with you in these moments – I remember in the waiting room there was a song on the radio that caught my at attention as it was  I Believe in a Thing Called Love by The Darkness it’s pure and simple cheesetastic rock music but, to the guitar player in me, it was simply  brilliant.  I went in and told the Dr. my story and he said that he thought it was a slipped disk but, because I had been feeling the pains since I was 10 or 11, he decided that an x-ray would be worthwhile just to rule anything more sinister out.

7 days later I received a call from the surgery asking me to go and see the Dr. regarding my x-ray results.  The Dr. showed me the x-ray and pointed to a shadow that had shown up and said that it needed further investigation.  He put a referral into the Chest Clinic and said that I should have an appointment in about 2 to 3 weeks.  This was scary, my head full of questions that had no answer;

Is it Cancer?

What will be needed; surgery, chemotherapy, radiography, medication?

Am I going to survive?

The wait for a chest clinic appointment was not 2 to 3 weeks, the next morning I had a call as I arrived in work;

Mr. Viner, the Dr has seen your referral and wants to see you this morning.  Can you come in?

This was much faster than I had ever thought and those questions were racing round my mind ten times louder and ten times scarier.  I called my parents and my girlfriend (now my wife!) and shared what was going on and went to the clinic.  The Dr. saw me and decided to refer me to a Thoracic Surgeon who saw me the next week and this was where the “Tumour” word was first used. He decided to take a Biopsy to determine what the Tumour was, I was not expecting the pain from the Biopsy being taken but it was like being shot twice in the back and from that moment forward I have suffered with pain in my back every day.

I remember having scan after scan; x-ray, MRI & CT, needle after needle in my veins and 6 weeks after the Dr’s appointment I went into hospital for Thoracic Surgery to remove the tumour.

When I came round, post surgery, I was not expecting to be on an Intensive Care Unit with; a tube down my throat breathing for me, machines all around me bleeping away and all manner of wires and needles going in and out of my veins.

“Scary.com”

The surgery had not gone well.

Because of the location of the tumour (which I had named ‘Gary’ for some reason) the surgery required the medical staff to collapse my left lung.  However, in theatre fluid in my body started to land on my right lung and start to drown me.  The skilled surgeons took 30 minutes to locate and deal with this and meant the surgery took 3 hours rather than 2 and a half.  However, after being stitched up and whilst in recovery my blood pressure was worryingly low, indicating that I was bleeding internally.  So I was rushed back into theatre and after a further 2 and a half hours the bleed was found and dealt with, because of this I was put on the Intensive Care Ward as a matter of course.

I was on the Intensive Care Ward for 3 days before being moved to the High Dependancy Unit for a further 3 or 4 days before being moved onto the ‘normal’ ward I was expecting to be on.  Slowly the various wires became less and less and after 11 days I was released from the hospital to convalesce at home.

Not a pleasant experience, and dark days followed.  I will blog on those days as this week unfolds.