A Quick Update

Ok, 6 days since the last update and not much has happened regarding the upcoming surgery. Kirsty, the N.S. secretary has been off ill for a couple of days (meaning there was a further delay) but has told me that she will call me as soon as she has typed up the notes from the N.S. – so we’re still waiting, getting good at it now!

In other News, I’m not in work today due to increased pain overnight that hasn’t shifted. This is draining and I’m hopeful that it have shifted by tomorrow. Any positive thoughts/prayers welcome for this!

Thanks for following this blog – it means a huge amount to us that so many people are concerned enough to follow the journey we are on.

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!

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.