Been a long time …

So it’s been ages since I put cursor to screen and blogged but there’s been a few good reasons for that, mainly this blasted disease I have inside me.

Having responded so well to the trial I was on, I found out at the beginning of December that it had finally failed after 14 cycles (each cycle is 4 weeks and the average patient manages 6 – so I can hardly complain) and a new tumour had sprung up in my lungs.  Now I know it was never supposed to be a cure but that doesn’t mean you stop hoping and feel any less disappointment  when they give you the news.

I was moved immediately onto another kind of treatment which was 4 infusions, one every 3 weeks, finished that and all was hunky dorey with the world.

Except it wasn’t.

On Thursday 14th March as part of my training for this years Challenge,  I ran 5 ½ miles in the evening and retired later that night to bed feeling as fine as I’d ever done.  The next morning I got up as normal, had a chat with wife Penny and went for a shower, still feeling great.  Then the strangest thing happened and I’m not sure I can adequately do it justice in words, but here goes….

My left arm started to twitch, only slightly to begin with but I was looking at it wondering what was going on as I was unable to control it.  Over the next minute or so the twitching became more frequent and violent, to the extent that my arm was literally flying around of it’s own accord, not in a small way but up and down, side to side, just about every which way you could think of.  I was helpless to stop it. It was as if the arm had become independent of me and I was watching something that had nothing to do with me.

I knew I was in trouble, big trouble but could do nothing about it.  As the fit grew in intensity my body was becoming more and more rigid and although I was screaming to Penny for help inside, I was unable to shout out as every muscle had frozen solid.

I guess I hit the deck as the next thing I was aware of was Pen standing over me asking if I was OK, as I led in the bath, everything strewn all over the place with water cascading down . I wasn’t OK as the whole of my left side had stopped working and I could only reply that we should pray it was a stroke – not often you hope you’ve had a stroke is it?

In truth we both knew what it was.

Off I went in the Ambulance and having reached A&E was quickly put through the CT scanner. Within minutes the Doc arrived and delivered the news that the cancer had spread to my brain….hardly a surprise diagnosis I must say.  He asked if I wanted to see a picture of what they’d found, which course I did.

Now, I’m no expert on these things but what I saw didn’t look too good to be honest.  About middle way back in my brain, on opposite sides of my head were two, what looked like very big dark areas – as it turns out I was correct – they are very big.  In fact so big, none of the medical people I see can believe I made it this far without any symptoms.

That though wasn’t the worse news I received that day.  The Doc returned with a solemn look on his fizzog, to duly inform me that I had to hand my driving license in as I was now banned for 6 months – talk about feeling as though they’d cut my legs off!

Within a day or so I was seen by the Consultant Radiologist at Southampton, who having chatted with me and looked me over, recommended 10 treatments of Radiotherapy at the highest dose.

However, in the interim I deteriorated quite badly.  I couldn’t talk properly, lost the ability to type and struggled to get from A to B without shuffling like an old man.

It was purgatory.

However my family around me were fantastic, stayed positive and helped me in every conceivable way they could, especially Penny, who quickly passed her driving test (first time) thereby ensuring we were still mobile and maintained our Independence.

Back to treatment…..

Radiotherapy, let me tell you, is without a doubt the strangest treatment I’ve had to date.

At the first visit they basically take a solid piece of plastic, melt it onto your face and then let it cool down so that it’s a perfect replica of your head.  This is then used on each visit to clamp your bonce in place, so that you are in the same position for each zapping.

At each consequent visit, you lay on the bed, have your head clamped in place and then this big dish thing delivers a blue ray to a set place on your head for a minute before moving to the other side and doing the same.  All over in two minutes, no pain, in fact no feeling at all.  They actually make the machine bleep to reassure you that something is happening, that’s how inane the process is.

I forgot to mention that the treatments take place every day for 10 days – working days, as they give you weekends off!!

I’ve now finished that and it obviously did something, as I can now talk again, type again (as you can see) and my physical state improved immensely.

For a while…..

On the Friday of the Bank Holiday at the beginning of May,  I did nothing more innocuous than kneel down and found I couldn’t then stand back up.  My left leg very quickly ballooned and looked like it belonged to an Elephant.  It was masshosive.

So off to A&E we went (again) in the morning and it must be said they were very good and having thoroughly checked me out, came to the conclusion that I had an Oedema, but as a precaution they would recommended  I had a scan on the Tuesday when everybody was back at work.

Tuesday came and once more to the Hospital we went.  Within 10 seconds of the scan starting the radiographer decreed I had a ‘big old clot in my groin’.  Thanks then A&E.  I’d only walked round with that for the three days!!

I was duly put onto Deltaparin which is a blood thinner.  Unfortunately it’s an injection and it is the most painful one I’ve ever had.  It has to be given in the thigh or stomach and stings like a mother trucker – whilst your having it and for ten minutes afterwards.

I have to have this every day for the next six months.  It wouldn’t be so bad, but Penny has a real look of relish as she does it and then I have to thank her afterwards.  Did I mention earlier how great she’s been? Hmmm……

This stuff was supposed to work within 3 or 4 days but I’ve found myself with a leg bigger than Nelly’s up until this week.  On Monday the leg started to get smaller and yesterday was the first time I’d actually been able to wear socks and shoes since the 3rd of May, which was just as well, as I had a free trip to watch the footie at Wembley (which incidentally was rubbish).

I am suffering a tad today with a bad knee but I’m hoping that’s down to the fact that for the past 4 weeks I’ve done nothing more than sit on my backside with my leg elevated.  We’ll see.

What then is the sum total of all that?

Firstly, I’m not going to be able to run the Challenge – I may have a go at Cycling some on the last day but in truth I’m struggling.  I have however ploughed on with the organising and we’re just about there.  New this year is our Raffle of Excellence which contains the most brilliant prizes.  You can view them all by visiting Youtube and viewing the promo film on this link: http://youtu.be/5NKIeMsVPL0  It’s all explained on there but basically for every pound you sponsor us we give you a ticket, yes for nowt, so therefore the more you donate the better your chances of winning.

So get yourself over to www.ssij.co.uk hit the donate button and keep your fingers crossed that you’re one of the lucky ones whose name comes out of the hat.  The prizes really are fantastic, don’t believe me? Go have a look now…..

The second consequence of all of the above and far more serious, is that I have been given a timespan of between no less than 12 weeks and 18 months before this disease beats me – now there is a Challenge.

I know the odds are stacked against me big time but that’s never bothered me in the past and I’m not going to change now.

Anyone want to bet against me?

That’s it for now then.  Won’t leave it so long next time, so in a bit people.

 

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