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.

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.

Quick Update…

Just a quick update to ask for some prayer/positive thinking!

The last few days I have been struggling with some flu like symptoms. This is a big worry with surgery less than 2 weeks away. It might be man flu and be gone in the morning but it could also be something more sinister. I need to go for a pre-op appointment on Tuesday, so if I am unable to shift this before the weekend I will be concerned that I will not be fit enough to attend. I will, hopefully, be seeing the doctor in the morning and hope that there will have been an improvement by then.

This is another barrier to get over but I know the power of prayer/positivity – and if I ever need it, now is one of those times!

Thanks, in anticipation of your prayers/positivity and I’ll keep you posted!

By the way, as far as I’m concerned, prayer and positive thinking are essentially the same thing. If the base line reason for doing it is out of Love for me, without any selfish ambition, the source is the same. I might call it “God” and you might not but if Love is the cornerstone, then it’s is just semantics.

This might be a little bit controversial, for some people reading this.

“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!