6 months for a child’s MRI?!

In June 2013, after three years of brilliant work, The Children’s MRI Scanner Appeal reached its £2 million fundraising target for the purchase of an MRI scanner for the Royal Belfast Hospital for Sick Children, as this is the ONLY specialist children’s hospital in the UK or Ireland without an MRI scanner.

We are now nearly a year later and despite the money being raised by charities (for some reason the local Health Minister – Edwin Poots -  obviously didn’t deem it worth paying for) it still hasn’t been ordered and it could be another year, at least, before it is in place.

In the meantime children can wait up to 26 weeks – that is 6 and 1/2 months – to use the adult MRI scanner at the Royal Victoria Hospital. Some children are even being sent privately (as there are two privately owned MRIs locally) which (according to NIPSA) cost £1million in the year 2011/2012.

Northern Ireland is definitely looking after it’s most vulnerable, ey?

Hulkamania lives on, brother!

The boys were introduced to wrestling (WWE) today. A long time ago I was completely an utterly addicted to wrestling; I started watching it around the time of Wrestlemania 2 – thought Wrestlemania 3 was the first one I was allowed to watch live, after I’d had a nap that afternoon – and never really stopped until about five years ago. Though I always watched Wrestlemania and, if I was in the house, I would catch the highlights of RAW and Smackdown.

I was so enamoured by wrestling that not only would I catch the local (at the time) shows, in and around London, Essex, and Kent, mostly but also trained a little with NWA Hammerlock and FWA. I was lucky enough to train with Doug Williams at one point. I also started writing during my wrestling phase, being part of a hobby called e-fedding which was where you wrote the life of a wrestler. Cool days.

Today, though, for the first time, my boys sat either side of me and watched some wrestling themselves. I explained that they couldn’t ever try it, and that the wrestlers were like actors (so not all bad/good/evil, etc), and that while they could (and did) get hurt they weren’t really trying to hurt/kill each other.
They both want to watch Wrestlemania 30 now, 30 years after I started watching it they are getting into it too. That is kinda cool.

Mackenzie liked Kofi Kingston and John Cena (DEFINITELY something about him that appeals to kids!), and Nathaniel liked El Toroito – a midget wrestler dressed like a bull :)

They both liked Hulk Hogan …the man that got me into wrestling too.

Hulkamania lives on, brother! :)

So many books!

There’s this thing going on over at Facebook, currently, where you have to list 10 books that have impacted you and stayed with you.  You aren’t meant to take more than a few minutes or think too hard – they don’t have to be the “right” or “great” works, just the ones that have touched you.  This is what came to mind:

1/ The Dark is Rising by Susan Cooper. This, more than any other book, has stayed with me all of my reading life, which was 6 (by that I mean first library card, and first book orders made by me, for me ). It is actually a series of five books, but as it is an omnibus edition I feel safe in choosing all five. If not then it would be the second book, actually called The Dark is Rising, which I read every year around Christmas.

2/ The Stand by Stephen King. Part of me wants to say The Shining, because I think that it may be a better book, but it is The Shining that stays with me the most. A wonderful tale of people and characters first and foremost, apocalypse, and post apocalypse, events second. Probably this one that got me into that sort of thing

3/ The Chronicles of Thomas Covenant, by Stephen Donaldson. I realise that I am cheating again as this is a ten-novel fantasy series so if I have to choose I will say the first one, Lord Foul’s Bane. This is portal fantasy at its finest, with a dis-likable character thrown from reality into a world of magic. I remember, while attending boarding school in Germany (as one does) running through the woods that surrounded the place shouting ‘Melenkurion abatha, duroc minas mill khabaal!’ the seven words of power as anyone who is anyone obviously knows.

4/ The Lord of the Rings by Tolkein. This is THE book that got me into fantasy and kept me there. I think that you have to be dead or in a vegetative state for all of time to not know what this book is

5/ To Kill a Mockingbird by Harper Lee. Considering the so very dark tones of this book (rape, violence, racism, etc) it is also a warm and funny story too. Atticus Finch is a legend!

6/ Battlefield Earth by L. Ron Hubbard. I don’t care that this man’s fiction spawned a religion that seemingly doesn’t know that the creator was a sci-fi author as I love this book. I’ve read it often and as it spawns tribal humanity right through to star spawning humanity it never gets old (the film though is dire!)

8/ The Lion, The Witch, and the Wardrobe by CS Lewis. This was one of my earliest books and it spawned a love of reading and a love of fiction, fantasy in particular. I bought a boxset of these books even before my first child was born, simply so that I could pass on my love of it to them. I did so, recently, to Mackenzie (who is 6) and he loves them too …he even reads bits to his 4 year old brother

9/ The Dark Phoenix Saga by Chris Claremont, Dave Cockrum and John Byrne. If anyone wants to dare tell me that a graphic novel – especially one as brilliant and seminal as this one – doesn’t deserve to be called a book then they can go and delete themselves from my friends list. OK, so, that got rid of them then, moving on! This is a Greek tragedy and comedy in four colours (as it was back in the 80s ). It has an amazing narrative, awesome characters, and doesn’t dumb anything down for the audience (kids, mostly, at the time …though I don’t think that is all that read it). The fact that, even know, it is referenced in modern comics tells you a little about its impact and legacy. …also inspired my first tattoo

10/ Magician by Raymond E. Feist. I think that I read this back in 82 or 83, again while I was at boarding school. More so than any other book, or series, it has stayed with me because of the sheer amount of sequels that it spawned …I think it would be about 28 or so books. I’ve read them all and, next year, when the last book in the series comes out I will be a little sad.

…so many, many, many other books I could’ve listed!!!

Legacy in motion

Spent some time, this morning, taking Mackenzie through some kung fu drills in preparation for his first belt grading.

Was such an amazingly cool moment teaching my son something that I started so many years ago.

His goal now is to get to 7th degree black sash (the last graded belt) to beat my 5th. He’ll probably do it too, and may end up teaching my class when he’s older. As long as he enjoys it, and learns something from it, it is worth it.

A cock and balls story…

checkThis isn’t something that I was going to talk about; until last night, in fact, I wasn’t even going to tell my parents/in-laws.  The only person I had spoken to was my wife.

…and the doctors.

However for two reasons the decision to tell the family was made: the first being that if they found out after the fact they would probably kill me, and the second being that it was good news.

Really good news.

Then, after speaking to my father this afternoon, his words stayed with me.  He said that I was really lucky that I wasn’t like some guys who never checked themselves and, even if they did, didn’t go to the doctor either out of embarrassment, immortality complex, or sheer stupidity.

Well, I don’t embarrass easily, know that – while I am hard to kill – I’m probably not immortal (hasn’t been proven wither way, yet), and have an IQ of 132 so am normally not stupid.  So, here’s the thing…

You see a few weeks back I started feeling some discomfort in my low stomach/groin and, occasionally, a feeling of nausea.  At the start I put it down to being tired, possibly a stomach bug, or even something I had pulled/hurt at kung fu; then a few days ago I found the lump in a private pace where, really, a lump shouldn’t be.

— An aside: it’s weird but the doctor, and then the nurse, then finally the consultant, all referred to it as a ‘scrotal mass’ but I think that lump is much friendlier …I may even have to give it a name. —

So, yes during a regular check WHICH EVERY MALE SHOULD DO OFTEN AND PROPERLY (if you don’t know how to do it look online or ask your health practitioner) I found a small, marble-like lump on/near one testicle.  It was a bit of a shock, obviously, both because of what it was … or could be … but also because once found, and ‘squeezed’ it became obvious pretty damn fast that it was the cause of the discomfort.

I left it a day or so then got my wife to check it too; at the start I was going to keep it quiet until I got it checked but then I remembered who I was married too and if I feared that not telling my parents and in-laws might result in death I knew that not telling my wife would result in me wishing for death!

Anyway, she felt it too so the next day I went to the GP who asked if I wanted a male doctor then remembered that there wasn’t one available, or if I wanted a chaperone in the room when she examined me.  I didn’t care if it was male or female checking me out as both would have been qualified doctors (one would hope, I am not sure that I would just want a random person checking me out quite the same way …though if Sandra Bullock was said random person, perhaps) so the lack of embarrassment or just the fact that it NEEDS done should be something that every male again takes on board: if you find a lump get it checked; if you are embarrassed, tough, get it done anyway!

The doctor referred me to an urology consultant for tests but told me that it could take about six weeks.  Instead of waiting I contacted a local private clinic to ask if they could fit me in and was told if I could get the referral form to them that I could have an appointment that very same evening.  I could so I did.

I wasn’t planning, when I got up that morning, to have  a strange man bring me into a dimly lit room, smear cold jelly all over my nether regions, poke, prod and photograph said regions  and even, at one point, fondling a part that has not had many male hands on it in its lifetime, I’m sure, to move it to the side so that he could get better access to Lefty (the testicle with the issue, of course) …no dinner, no flowers, not even a ‘by your leave’ just finger and thumb, lift, and move!

Despite my lack of plans that is what happened though, in medical circles, I am told that it is called ‘diagnosis’ and ultrasound testing rather than fondling.

While the report has not been written up, and there is some more testing on the horizon, the consultant was very confident (999 out of 1000, in his words) that what I have isn’t ‘sinister’ – in other words … words, I am told, are very difficult to hear and say, which is the whole reason I am writing this post, in the hopes that those afraid to hear/say anything actually CAN … not malignant testicular cancer – but rather a benign epididymal adenomatoid tumour.

Like I said there is more testing on the horizon, potentially surgery to remove it if it changes/grows or causes more discomfort …however due to my peculiar genetic make-up surgery can be an issue so while they commonly remove these things as a precaution (and to remove the discomfort) the risk of anaesthetic outweighs this currently; there will be, I feel, discussions between the medical folks about what to do next.  And I, my friends, will simply listen to their advice.

I realise how lucky I am.  I not only knew how to check myself but I also didn’t hesitate to go to a doctor and let them check it out.  Was it, despite my bravado, a very bizarre situation to have different people looking at, poking, prodding, and generally handling my cock and balls?  Was it scary waiting to find out what was going on?

Of course it was!

…but not to do anything about it, through embarrassment or fear, would have been worse.  It would have been the height of stupidity and, potentially, very, very dangerous.

So, the reason for writing this rather private and sensitive post is simple:

I urge ALL males to check themselves regularly, to ensure that they know how to do so and what they are looking for and, ABOVE ALL ELSE to seek medical attention if they do find anything.

Like I said, I’ve been so VERY lucky.  Even if Lumpy (I think that I’ve decided on that name – not original, I know, but it definitely fits) hadn’t been of the benign variety I was told that if it had been worse, if it had been malignant, I’d probably caught it early enough to be in the 95% of people who can be cured and survive.

If YOU don’t’ check, if YOU don’t seek help, YOU may not be so lucky.

For more information on lumps/scrotal masses visit: http://www.nhs.uk/conditions/Testicular-lumps-benign/Pages/Introduction.aspx

For more information on testicular cancer visit: http://www.macmillan.org.uk/checkum

How to Assemble Your Zombie First Aid Kit

Braaaaiinnnnsss!! Grab the machete, board up the doors and windows because it’s time to prepare for the brain eating and bloodthirsty zombies that will scuffle into our communities at any time completely unannounced. The undead will rise again, so it’s essential to pack your first aid kit now! Keep them handy at all times because no one knows when those nasty zombies will come a knockin’! Don’t pack your basic first aid kit either with just gauze, bandages, and creams. No Red Cross first aid kit or military first aid kit will cut it when the dead walk the earth!

To prepare for the zombie apocalypse the right way, pack the best first aid kit possible with only the finest first aid kit supplies. Don’t forget to pack a baby first aid kit that is small enough to fit in your back pocket, because you never know where you’ll be when the apocalypse strikes and the walking dead are among us. Without this you’ll be a goner for sure! Check out the zombie apocalypse first aid kit checklist infographic below if you want to live! Be sure that the first aid kit contents you have are exactly what you need to survive the zombie apocalypse and, good luck.

Creating a zombie apocolypse first aid kit

Another year bites the dust.

So it looks like the Mayans were wrong – though, in actuality, I never thought they were ‘right’ – as we are going to continue on our merry way into 2013 so I thought that this was a great time to have a look back.

It has been another great year.

I am with my wonderful wife, best friend, and soul mate: Carole.

Our two boys – Mackenzie and Nathaniel – continue to be wonderful and while I can no longer call them babies, as they are five and three, they are – and always will be – my babies.

I started working with the Northern Ireland Rare Disease Partnership this year, and had a verbal sparring match with my Minister for Health on my birthday.  I became a Governor at my kids’ school and a Director for the Arts and Disability Forum for Ireland.  This is part of how I feel I can give back.

I saw another of my two students become black sashes in Kung Fu and realise that no matter how long I stay active in the school I have shaped a legacy that will go on as long as the school exists (and beyond).

I became a co-host on the Following The Nerd radio show, and contributing writer on the website, with the bonus of meeting the owner, Marc Savage who has become a really good friend.  Through that I have spoken to people like Chris Ryall, Declan Shalvey, Will Sliney and Todd McFarlane – yes, this nerd is living the dream.

If I get through the next twenty four hours I will have gone a full year without being in hospital or A&E (yes, I am counting down the minutes!).  I have had many a treatment and drug trialled and, disappointingly, still no mutant powers.

I attended a two day writing work shop with Colin Bateman and, from that, I have solidified not only my desire to write but also my intent to write better and professionally.

I have had a further seven stories published this year, sharing cover space with two people whose writing I adore: Wayne Simmons and David Moody.

I have plotted my first novel, the research stage is mostly finished, and the outlining complete; actual fingers to the keyboard recommences early in the New Year (the 2nd of January, to be exact).

I have published over 100 stories for With Painted Words and The WiFiles, and have read in excess of 1000 stories along the way to that.

…and now 2013 is about to commence, with 2012 coming to an end, I wonder just what the chapter of the story will bring?  Whatever it is I bet it will be interesting!


Marie Stopes opens in Northern Ireland

I feel a rant coming on; you have been warned.

Northern Ireland today sees the opening of a Marie Stopes clinic. To give you a brief idea of what Marie Stopes offer they do contraception guidance and supplies, health screening for men and women, STI testing, vasectomy counseling and procedures, female sterilization counseling and procedures, the morning after pill, and yes they give advice on abortions and carry them out too … ONLY if the fetus is under 9 weeks and there is a medical cause for the mother herself. That is the same as any NHS hospital in NI.

However the press, the politicians and the rabid public are only seeing one thing, which is evident in what they are calling the place: ‘ABORTION CLINIC’!!!

Now the Northern Ireland Attorney General has called for a Stormont investigation into the opening of the first private clinic in Belfast ‘to offer abortions.’ The thing is that Stormont has been very aware of this place opening for a loooooong time, in fact it is even being run by a former Stormon MLA, Dawn Purvis.

Yes, abortions are a very emotive topic but I wish that people would actually do two things: 1/ do the research and find out the factual information before they get all irate about something and 2/ leave the sensationalism out of things and report – or comment – on it openly and fairly.

The fact of the matter is that the Marie Stopes clinic has said it will carry out medical, not surgical, procedures only up to nine weeks gestation and only within the existing legal framework.

It said that the health professionals in the clinic will be from Northern Ireland and that they will make the assessments, although the views of the woman’s own GP will be taken into consideration.

They are doing the same thing that is ALREADY available, via the NHS, anywhere in Northern Ireland; all they are doing is giving a rounded service to do with sexual health, under one roof.

They are NOT offering a private abortion service, on demand, for any reason, up to 24 weeks … which is what the press and public seem to be implying.

So pro-choice or pro-life, it doesn’t actually make a difference at the moment – just get the facts right and stop making a sensitive issue into a hysterical witch-hunt that is only hurting and demonising the people that the clinic is trying to help.

Feel free to comment – however if it gets personal or stupidly over the top be aware that I will delete the comment.

Every silver lining…

Early last year – possibly about 15 or 16 months ago – I had a fall at work and injured my hand and arm.  It wasn’t anything too serious – my hand was strapped up and I was in a sling for a couple of weeks.  After that I noticed that I was having occasional aches in my arm – running down from the elbow to the hand – and that I was having a weird feeling, almost pins and needles, or a half-asleep sensation in my little and ring finger.

This kept going, on and off, over a number of months.

Eventually – when the numbness became more pronounced and more pervasive, with a dulling of sensation in the fingers at all times and aches/pains becoming more frequent (especially when touching anything cold … OUCH!) I went back to the GP.  Her first port of call (quelle surprise) was that it was probably related to my ‘condition’ so would send a letter to my neurologist to ask him to look into it.

A couple of weeks back I realised that nothing had ever happened and that the issue was becoming more pronounced and more annoying (affecting my writing, martial arts, etc) so went back, seeing a different GP this time.  I found out that while a letter was to be written there, somehow, didn’t seem to be a trace of that actually happening.  So, we started again … he was actually more thorough (he booked me in for two appointments, bless him – one to read through my copious notes in advance of actually meeting me :) – the second for the actual consultation) and stated that while it could be related to my genetics it could also be many, many other things so wanted to cover all the bases before moving to the neurology answer.  This included mobility tests there and then, sensitivity tests with needles and tissue (to see if I could tell the difference … I couldn’t), a normal check-up, and blood tests.  Many, many blood tests.

So, last week the results of the tests came back and when I phoned for them on the Monday afternoon I was told they were all clear.  Then yesterday I got a call from the GP asking if I could make an appointment to see him … I said yes, and mentioned next week, he said no and said then and there.  As I was over an hour’s drive away, and it was 6pm, we compromised on first thing in the morning instead.

It seems that while I was told everything was clear there were a few things that weren’t.  Namely my lack of B12 and Folic Acid.  Between Monday evening and Wednesday the GP had contacted my neurologist (who is actually out of the country on vacation but upon getting a message it was about me phoned the GP) and together they decided there was some urgency involved here.

Why, you ask?

Well, I can answer that now, as it was made VERY clear to me this morning: low B12 and Folic (or Folate) levels can affect the body’s ability to produce fully functioning red blood cells … cells that carry oxygen around the body … oxygen that, due to the genetic condition, is already hard to come by for me. Folic acid deficiency may cause fatigue … and due to the genetic condition I am already prone to fatigue which (as it did last year) can lead to complications like respiratory failure.  Both low B12 and Folic Acid also help with nerve related things … and my genetic condition is caused by poor communication between nerves and already weak muscles.

As I said it was made VERY clear why this was more serious than ‘just a vitamin deficiency’ … yes, I said that to the GP :)  He pointed out that you wouldn’t normally get a world class neurologist and a GP talking across continents to discuss immediate treatment for ‘just’ a vitamin deficiency (I have a feeling he may have mocked my ‘just’, you know!).

So, anyway, I was immediately given a barrage of more blood tests to see what else is going on – they’d like to know WHY my body is no longer absorbing B12 and Folic Acid as my diet hasn’t changed so should be giving me enough (he said I’m getting enough just not keeping it / using it correctly).  Eleven vials of my precious red liquid later and I was then given two injections, and have to go for a top up every other day for the next few weeks and then (hopefully) they’ll stretch this to every three months.  The things is that when I asked when this would stopped he seemed to imply it may not … could be this injection for ever :/

My neurologist has already phoned a colleague of his and arranged for me to be seen immediately (they’re contacting me tomorrow or Monday (which I think will be Tuesday as it is a bank holiday) to arrange date next week or early week after to get muscles and nerve conduction checked too … there is a chance that the arm/hand trouble is linked to genetic condition, or to B12/Folic Acid lack leading to nerve damage, or muscle contraction trapping/damaging a nerve.  Basically they don’t know but don’t want to take any chances.

My frequent flyer, platinum loyalty card for all things health related seems to have been used again.

In the meantime I am to turn up every other day to get injected with huge doses of hydroxocobalamin (B12 replacement), I’m to take huge daily doses Folic Acid and I’m to monitor myself for signs/symptoms that are unusual, that are worse than normal, or that come on fast … why is this?  Well, you see, by giving me the huge doses of B12 and Folate they are going to reduce my potassium even more as a side-effect.

And, guess what?

Yes – that’s right … low levels of potassium cause muscle aches, cramps and weakness. Low potassium levels also won’t allow neuromuscular cells to recharge, which prevents them from firing repeatedly.   So, in other words, they are going to make my already wonky muscles, and neuromuscular junctions, even worse! :)

I think that my motto, from now on, should be this: every silver lining has a cloud!!!