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!!!

Another Week and More Withdrawals

Well, if I thought that the Gabapentin withdrawal was rough Amitriptyline is another beast altogether.  This week has been rough, some incredible moments of clarity and feeling great but they seem only like fleeting moments.  The rest of the week has been tough.

My sleep has been disturbed by intense dreams, not really nightmares but some of them have been incredibly vivid and intense.  I have been waking 2 or 3 times in the night (usually between dreams) sweating and still feeling the dreams in my body and as a result at times Gill has been sleeping next door in the spare room.  I don’t blame her!!!

Most of the time and especially if I have just reduced my doses, I have been feeling really rough, my body has been aching and tender – sometimes it hurts to even move.  I still have that nagging cough, it usually comes to say hello once I do start to move or talk. All in all I have been assigned to watching films, television or the interweb, despite my desire to do other things (reading, playing guitar etc…) it has been too much of a challenge.

On better days I usually feel a bit more together by 2pm and I have been able to get into the garden and do some veggie planting and nurturing for an hour, or run the vacuum cleaner round or other little housework tasks.  I am still only able to do about 20 minutes of light exercise at a time, sometimes I can now do a couple of stints in a day.  I’m expecting to get a referral through for some physiotherapy to start in the next week or so, that will be really good as it will be another positive step towards building back my strength and stamina.

However, despite my grumbling, I am now at 50% doses on both Gabapentin and Amitriptyline – compared with the pre operative state of play.  So, when I think of that, it’s well worth the pain, discomfort and frustration.  If the brief moments of clarity are anything near what it will be like once I have reduced as far as I can then I will be incredibly happy.  I’m also losing weight (!) it seems to be dropping off I’ve lost nearly a kilogram in the last week with very little exercise being managed, so another plus side!Currently the day to day is pretty crap, but there is a purpose to it and I know I’m heading towards the incredible goal of no medication and no pain.  We’ve also just booked a holiday to France in July/August for 11 days so that’s another thing to look forward to.

Thanks for reading!!!

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.

Week 2 Recovery Update

Well, here I am again with another update and a fresh looking blog page!

My recovery seems to be going really well and, with regards to the operation, I feel stronger and better each day.  This is in stark contrast to 8 and a half years ago but the journey is only still in its early days, so I don’t want to get too ahead of myself as I know I am still in a vulnerable state.  However, I have developed an annoying cough over the last week that causes me quite a lot of pain in my chest which is very frustrating.

Medication…

I have begun to reduce my medication, which is proving to have its own challenges.  I am taking more medication now than before the operation but the main reasons for this is to help reduce swelling and control pain from the operation itself.  I am currently on the journey of reducing the original medications I take that deal specifically with neuropathic pain.  The big 2 drugs I am taking in this regard are called Gabapentin and Amitriptyline they are addictive drugs (one dr. said they were dirty drugs!) and, unfortunately, I’m hooked.

I have previously blogged about these medications and the side effects that I have suffered from them and, as you know, I really can’t wait to see how far I can reduce them.  Gapapentin is the drug that has caused me the most grief, the drug is designed to stop your nervous system from becoming overstimulated and essentially dampens down all of the signals that are being sent to your brain.  This is mainly used to help epileptics reduce their fits and, if they do have a fit it’s severity is reduced compared to what it should have been.  The drug also works well for pain management and as a result of my pain I was initially given a mild dose of the drug.  This was quickly increased to the maximum dose that a person can have and the side effects of this drug meant that I struggled to think clearly, join in with conversations and be “in the room!”

Now I am reducing the Gabapentin dose that I take.  When I was in hospital the doctors cut my morning dose of the drug by 50% with very little side effects felt.  I am now undertaking the reduction of the night time dose, which is a different kettle of fish altogether! Even reducing the dose by 1/6 (the smallest reduction I can make) causes a big reaction.  My sleep is disturbed and I wake in cold sweats, my dreams are extremely vivid and sometimes distressing. When I wake up my skin feels like it is crawling, I ache all over and I can feel quite disorientated.  Not the most pleasant of experiences, it is however an necessary evil if I am to come off these drugs.  This week I have been able to reduce the night time dose by a third and in a couple of days I will step it down again to half.  Then I will try and do the same with the Amitriptyline.

All in all the side effects of this medication reduction will pale into insignificance if there is no increase in the pain levels as the increase in my clarity of mind will be massively increased and my stamina levels should also increase, meaning I could work more hours (if I want to!).

Stiches Out…

This week I had my stitches taken out from where my chest drain had been and unfortunately the wound has opened up again.  I have had it packed and redressed by the nurse at the doctors surgery but this is not an ideal development.  Gill will need to redress the wound over this weekend as it is a bank holiday so the surgery isn’t open for the nurse to do it.  However there is no infection in the wound and the prognosis is hopeful for the wound to heal and knit back together.

Infection

Frustratingly I am now having to take some antibiotics as have an infection in a rather sensitive area!  During the operation I was catheterised and where the catheter was removed there must have been a small cut made that has now become infected.  As I’m sure you are aware this is not pleasant as it is tender and uncomfortable to say the least.  Hopefully the extra medication will deal with this over this weekend and it should clear up quickly.

Tooth

In the last 2 weeks I have also had trouble with one of my front teeth.  As a child I chipped one of my front teeth which was ‘”root filled” and had a cap put on.  About a month before the operation this cap came off and the dentist said I need it replacing.  I am currently in the middle of this process and as a result I have a temporary cap fitted.  This cap however has now come off 3 times since the surgery (twice in one day!), resulting in unplanned trips to the dentist to get it put back on.  Each trip the dentist uses a stronger adhesive and hopefully the latest trip will be the last visit until I have the final cap fitted.  This has meant that I have been out and about much more than planned which has been a challenge but also a good platform for building my stamina back up (always look on the bright side of life…)

So there it is, I am doing well all considering.  If you pray for me I would ask for 5 things to be the focus:

1. The reduction of my medication
2. The healing of the wound where my chat drain was
3. The infection from the catheter to clear up
4. My capped tooth to stay on until my next planned dental appointment
5. Continued recovery from the operation especially around stamina, strength and the reduction of my annoying cough

Thanks for reading this – your support is, as ever, incredibly precious to both me and Gill.  If you live locally and want to come and see me please get in touch and we can arrange a time for you to come and visit.

One Week On…

This time last week I was on the table with a team of doctors operating on me, I remember the moments just before I went under, the room was spinning as I was given a dose of Ketamine to knock me out. My next memory was coming round, I have vague recollections of being disorientated and panicked in the recovery suite and then felt the pain hit me hard.

The operation lasted for a total of 5 hours and the operation was largely successful. The doctors had to chisel away about half of my vertebrae and then do a bone graft from one of my ribs to stabilise the joint. They also cut out all of the scar tissue from the last operation. Unfortunately one of the nerves had become crumpled as the scar tissue had formed around it so they had to take the nerve away as well as the tissue. This might leave me with some numbness on my left side, not that I have noticed yet!

As far as success goes I don’t want to count my chickens but I have had very little stabbing pain and I am now reducing my medication and will see how this develops but early indications are positive. This does not mean I’m cured, far from it, but as the next few weeks unfold I expect that the swelling will reduce, the scars will heal and as my back regains strength I will be able to see a fuller picture and then I will be able to understand the impact of the operation.

After the surgery I was, quite incredibly, only in hospital for 4 nights and went back attend a clinic appointment on the ward yesterday. I have had my chest drain removed and now will not go back into the hospital until the 8th May when I will see the surgeons in the out patients clinic to get a fuller picture of the surgery and see an MRI scan that will show their handiwork.

All in all, apart from the expected tiredness and pain, I feel good – still vulnerable and weak – but good nonetheless.

I want to say a BIG thank you to all of you who have been following this journey and have prayed for and supported me. I’m lucky really as I know that many people will go through similar and far worse experiences with hardly anyone to support them, it’s those people to whom I take my hat off.

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.

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!!!

“Hi Ho – off to work I go…”

Well the first paid job I undertook, after 3 years of wilderness, was working as a learning mentor for a FE college in Leeds.  There were a number of young people who were coming to the college on placement from schools as they were behaviourally challenged and the schools were after babysitters for them.

I could only do part time work, 25 hours a week, and this hasn’t changed to this day, however I only did this job for one school term and then an opportunity I couldn’t resist came along…

Before I was signed off work I had started working for one of 3 or 4 multi-agency teams, based in school clusters.  The teams worked in one local high school and their cluster of ‘feeder’ primaries.  The one I was working for before the kerfuffle of pain and tumour was in the south of Leeds and now an opportunity presented itself and I was able to join the team in the west.  I started working alongside the sorts of young people that had been sent to the college placements with some incredibly talented, resourceful and caring colleagues.  At that time on the team we had a; Social Worker, Mental Health Professional (CAMHS), Youth Worker, School Exclusion Cover Team for both Primary and Secondary schools), Learning Mentor and others I have forgotten.  The work we were able to do ranged from case to case and we were able to support vulnerable young people and their families as they went through the struggle of schooling when facing incredible social and domestic challenges.

We worked with the kids that teachers understandably wanted out of their class as they lacked some the basic social and academic skills required to engage with learning.  A common student case we worked with would have been;

Jimmy – Year 10 (14/15 years old).

Reading age:

7 years

Domestic life:

• No father (in jail for domestic violence which Jimmy witnessed)
• Mother is a drug addict
• 4 siblings (from different fathers)
• older sister (16 years old) pregnant
• older brother permanently excluded from school
• 2 younger siblings.

School Life;

Excluded for fighting with other students, verbally abusing teachers, over sexualised and inappropriate behaviour, says he doesn’t care what happens to him.

Aspirations:

Either non-existent or Drug Dealer

Agencies involved:

• Social Care
• Youth Offending Team involved

This really isn’t an exaggeration, yes this might have been one of the more complex cases but we would regularly be working with children living in these situations.

Completely challenging but a real privilege to be able to support in some small way.

Within the first week of this job I was put on a training course telling me how to deliver a Parenting Course!

“…me, teaching Parenting? I don’t even have kids, how could I do that…?”

Nevertheless I did the training and started to deliver within the first month of being there. Flip this was a challenge! The closest thing to parenting I had ever done was looking after a dog and babysitting my niece and nephew for one weekend!  However the beauty of this course was that I didn’t teach parenting, we structured discussion and activities to either draw parenting principles out or look at psychological evidence for particular approaches and the look at how they could be applied in the context of the families we were working with.  Unbelievably it worked!  The parents would mostly come back week after week telling stories of success and, unless there had been external influences, barriers that could be overcome through brainstorming strategies to help achieve the next small step to success.

This was incredible, an amazing privilege and I was able to apply the same basic principles to the way I worked with young people.  For example Jimmy (described above) would come to a group of about 8 other challenging students in his year group and me and an incredible Youth Worker called Jane and do some work for us when they would refuse in any other setting.  By using simple things like specific praise when he did anything right, ignoring some of his unwanted behaviours that other teachers couldn’t ignore (e.g. one kid would come any lesson and ‘eff’ and ‘jeff’  about not doing any work and, as soon as he looked like he was going to engage with some work, we would praise his positive behaviour massively.

“Jimmy, I really appreciate that you have picked your pen up, you’re the first person ready to start and that shows me that you respect me and that makes me happy!” (believe it or not this was also coupled with a ‘Sponge Bob Square Pants’ sticker!)

After a while I noticed that my outlook on life had changed, I forgot that my pain controlled who I was and made sure that the pain and the drugs were controlled by my decisions and, as tough as it was, I was back, maybe I was 60% back, but that was 59% better than it was.  Working , with all the challenges I had to overcome, had made me remember who I was and my identity was now defined by the positive things in my life and that was the start of looking for a better future!

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.