Where I’m Up To…

Hi there again, thanks for checking in with me.

Probably not got a lot to say other than another update with where I am up to and a brief taste of where I plan to be in the near future…

This week I am having a break from the reduction process, mainly because I want to enjoy the upcoming ‘Wed-Fest’ over this bank holiday weekend in Scotland.  So, as far as the reduction goes, I am currently at 50% with the Amitriptyline and at 33% with my Gabapentin reductions.  With no increase of pain and massive sense of my head space being cleared and having freedom from fogginess!  All I can say is how much I now value clarity of mind – I can’t really believe how I had been living and operating without the clarity I have now, and I still have a long way to go with my reductions.  I haven’t even thought about reducing the Tramadol yet so whatever effect hat is having on my body I will surley notice when that reduction process is underway.

My plan for the future is coming into view now.  I am looking to the end of August (9 years since the first operation) as the point where I hope to be clear of all medication and back to as close to ‘full strength’ as possible.  I start physiotherapy on Wednesday so that will help me with starting the journey of re-strengthening the muscles in my back and building my fitness levels back up.  I hope that this time frame is not too ambitious but I do believe that if you don’t set a target there’s nothing to aim for and that motivation is a challenging thing to find for a vague goal!!!

All in all, I have surpassed many of the goals I had set by a long way.  The only thing that has been more difficult than planned is the withdrawal process.  This massive challenge I have had to face has also halted my physical recovery somewhat as, when I am struggling through the symptoms, my energy levels are no where near enough to be up and about and building my stamina and fitness back up.

So the medication reduction journey will be continued as of next Tuesday, and the plan is that I will, hopefully, be off all my neuropathic medication by the end of May.  I can’t wait for that.  My doctor has given me a sick note for work that will run out on the 23rd May.  Hopefully that will be when I can restart work but that is not guaranteed, it’s all dependant on how I get on with the drug reduction process.

Fun times ahead!  I’ve got to say that joining Love Film was well worth it as the opportunity to watch movies when I’m feeling particularly rough is very much appreciated!

Till the next time – have fun and enjoy life, I will certainly be trying to that without any withdrawals!!!

Withdrawal City!

My last post was a little while ago so I thought another update was well overdue!  I have been struggling to keep my head focussed in the last few weeks, hence the lack of posts!

Since the last post I can report that…

1. My Medication reduction plan is in place (more below)
2. The wound from the chest drain is still healing and has made significant improvement.  I am having it checked and redressed by the district nurses every other day and Gill or I am able to change the dressing the days I don’t see the nurses.
3. The infection from the catheter has cleared up, thankfully!
4. My capped tooth has remained in place so I have had no more unplanned trips to the dentist!
5. My strength and stamina is improving (more below) and the cough has reduced although it still lingers on!

Medication

I am well on track with my drug reduction process.  So far I have reduced my Gabapentin dose by 50% to 300mg twice a day and I am now working on reducing my Amitriptyline dose to half of the pre operation dose.  All in all I have not noticed any increase in the pains I had before the operation, I have had a few sharp stabbing pains but these are mainly focussed in the operation site, so I think they are more to do with the healing process than anything else.  The fact that I have managed this reduction is great, I feel so much more alert and have improved clarity in my thinking processes – this is a massive improvement and one I welcome wholeheartedly.

However, it is not at all easy to reduce the medication.  Each time I reduce the doses I have disturbed nights sleep (waking in the night with cold sweats etc…), vivid and nasty dreams and noticeable withdrawal symptoms that last for about 3 to 4 days.  I have been working on a program that I have set up where I reduce my dose every 4 days, this means I try to get at least one day where I feel alright before I go through the motions once again.  This can be a gruelling regime but one I am committed to as once I can come off these tablets I will know the success level of the surgery.

This system I have set up will mean that I will have reduced my Gabapentin dose to 300mg ONCE a day by the 3rd May and I will finish the Amitriptyline altogether by the 11th May.  Of course if I begin to see any signs of excessive struggle or increased pain the reduction process will be amended but, as it stands, I am committed to this plan.

Strength and Stamina

I am now able to get out and about much more than the last time I posted.  I can do about 20 minutes walking the dog each day and I have started to pick up small household chores as I can.  I have a plan to try and increase my activity every week and I hope to get a referral for some Physiotherapy from my doctor today.  All in all I am doing so much better than expected.  Last Thursday, 3 weeks after the surgery, we went out for 40 minute walk with the dog.  This helped me to realise two things.

1. I have recovered really well and am ahead of my expected rate of recovery.
2. I have limits and at the moment 40 minutes of walking is too much to cope with!  I had “Jelly Legs” for the rest of the day and was still exhausted on the Friday!

Gill has, as expected, been incredible in looking after me, however she is still having to do much more round the house than me, which can be tiring for her alongside everything else she is doing.

All in all I feel very positive and excited about the next phase of my journey.  I have made some real commitments that I hope will help me take advantage of this and in some way I believe that I have come into a time of acceleration where the things I have missed out on in the past 8 and a half years will be caught up with and fully restored. What that will look like I am unsure but I know that it will be GOOD!

Thanks for following this blog, I will continue to update when I can.

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!

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.

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.