The Lighthouse

I've been thinking about writing this for quite a while.  But final words are hard to find.

To sum up a life.  How can you do that? especially this life.  This life of the greatest of men.  I, as his wife of course would say that.  But I only speak the truth.  A man of honour and humour.  Of kindness and care.  Of interest. Intelligence. Pride.  A gentle giant. Warrior. Leader.  Entertainer.  Friend. Lover.  Strength - unrivalled mental and physical strength.

Father.  Most of all a Father.  A truly great Dad.  Compassionate, understanding, firm, fair, fun and loving. Full of knowledge of so many things - history, literature, sport, film, all sorts of interesting and sometimes obscure facts! an ability to talk to anyone about anything - and always hold his own.

Irreplaceable.

A man of love. Michael gave love to everyone and was loved in return by so many.

I write with joy, love and pride as I think of Michael Alexander Giles and this is the last entry in the Diary of a Fadman. But it is not the last chapter.  His story goes on because his is a light that will never go out.  He wasn't granted his wish.  He didn't get what he wanted.  But he did leave a giant, 6ft 4, size 13 imprint on this world.  And he has two fine young men following his lead.  His story will go on.  In me his widow.  In his two beautiful, courageous sons. His family.  His friends, his colleagues and friends of friends that heard his story and his character; boy did he have such a lot of that!

Michael died at around 11.20am on Monday 29th December 2014, at home, looking into my eyes as I spoke to him, holding his hand, stroking his head with his Mum holding his other hand.  The boys were out - the only day they were away from home over the entire Christmas period.  I think he must of known, he never wanted them to see him suffer, he never wanted them to suffer.  He protected me and the boys our entire life together. Always there with his big strong arms around us.  He always put us first, he made us feel so special.

I miss that.  I miss being special.  I miss my best friend.  My number one fan.  I miss him walking in the house, singing some ridiculous random song or a little ditty he'd obviously spent his entire car journey home from work composing.  I miss him making the house laugh with his gags - no matter how painful some of them were!

Michael's last moments of lucidity were on Christmas morning 2014.  The boys were opening their presents left by "Santa" in the room downstairs we'd made into a bedroom as we couldn't get Michael upstairs.  Michael had been bed bound since coming home from hospital in November and in fact the months preceding in hospital. We tried to get him in a chair; using a hoist but every attempt was too painful, even with copious amounts of morphine. During the present opening ceremony, I delivered a running commentary to Michael as he was in and out of awareness but he was there, he was experiencing the Christmas morning joy by proxy from the boys.

I can't possibly describe how absolutely painful and utterly heart breaking it is to watch the person you love be reduced to such poor quality of life.  To be in such pain and as he did in the last months of his life, lose the use of his lower body.  With no hope of improvement, only death and nothing at all you can do but shield him the best you can and fill him with love. So unjust, so so very wrong.

And despite all of this Michael maintained his valour, his humour and his consideration for others above himself.  We still laughed, we still loved, we still shared beautiful moments.  We got the most inappropriately sized Christmas tree - as we'd done every year previously - squeezed it into the room.  The carers catching their backsides on it every time they came to wash Michael.  Friends visited, I remember a particular sing a long one Saturday afternoon.  Family visited.  We had an unintentional mock Christmas Day earlier in December (in hindsight - glad we were for it). Michael's sister made a cracking dinner, we laughed, we messed about! there was fancy dress involved and games, music, dodgy TV and chocolates.  Hector (our dog) lapping it all up.  The kids all enjoying themselves.

In Michael's last moments I spoke to him. Heartfelt and honest words.  He wasn't able to speak back to me but I knew he was hearing me.  I told him what a great husband he had been, what a wonderful, joyful life we had together, the love he gave me and our wonderful boys, how much we dearly love him.  I told him what a great Dad he was. I promised to raise the boys as I know he hoped to - with respect, strength, decency and honour, a life of possibility, striving to live a full and happy life - as we'd always tried to do previously.  I told him he would be the brightest star in the sky, his light would shine on and from all of us.  I told him he would forever be with me, I told him he would walk in his sons for the rest of their days.  It may sound odd, but the last moments of Michael's life were the most beautiful moments I've ever experienced.  Profound. We shared something that nobody can ever take away and that few experience: the purest of moments.  We shared life, we shared his death and everything in between.

There is so much more to say about Michael's final days, weeks and indeed months - how it went from seemingly good to horrific so quickly. The suffering, the pain, the indignity, quite frankly the horror and maybe one day I will tell the whole story but I don't want Michael to be remembered for what cancer did to him, I want Michael to be remembered for the man he was.  The "Man Mountain" and a man mountain he truly was.

Michael taught us how to live.  To live with joy in our hearts.  To always see the bright side.  To smile through it all.  To be strong.  To be courageous.  Mind over matter.  To be positive even when there really is very little to be positive about - the eternal optimist.  He was right. The truth as we all know but sometimes live as to deny - we will all one day, no longer be here.  Guaranteed.

If you knew Michael, let his life teach you this - to live, show your best side,  shine your light on the universe. Be happy when happiness presents itself, laugh hard and love with an open heart.  These are my learnings too from the experience I have gained as the passenger in this journey and is what I carry as armour into our future. Of course it is not always easy to apply these principles but one must remember to try!  BE THE LIGHTHOUSE.

Michael Giles: Born on the 4th July 1971 Died 29th December 2014.

Thank you for showing us what true love is.

With love and pride Emma, Freddie and Logan.


"There is a light that never goes out"

The pleasure - the privilege was mine.

As Michael taught us - our life goes on.  In this spirit I hope to climb Kilimanjaro in Michael's memory in 2016.  If you wish to, please take a look at my just giving page for more information.

www.justgiving.com/EmmaEGiles


 

High, Low, Dolly, Pepper

Well the last month or so has certainly had highs, it has also had lows. I have had pepper on some meals but I can't claim to have had any contact with Dollies.

I hope you can remember the skipping game in the title. If you've never skipped on a rope with 2 people turning it for you, then you have not lived a full life. The exhilaration of jumping into a long skipping rope leaves me almost apoplectic just thinking back to those heady days in the back lane.
My older sisters, neighbours kids, friends would all be involved. The rope will have been about 15ft long and you would jump in with everyone singing..

High

Low

Dolly

Pepper

Hop

Skip

Jump

and Twistle

Each word was a command to either the turner or the skipper, for instance High meant the rope would  be lifted off the ground, Low meant the top of the rope would be lowered, Dolly was a freestyle trick.

You must be out of your brilliant mind

Well, it has been a while since I last posted. Since my last post where we received good news after our scan in January, little on the action front has happened. Since I started my blog I have been largely filling you lucky readers in with my back story from when it all went pear shaped. Now I am largely up to date.

My last blog brought me up to January 2014. Since then its sort of got normal. I think I am now in a routine, what with my treatment in London and my recuperation back at home.  There has been no problems with the trains or high dramas on the MRI table to share with you.
This blog focuses on the more subtle side effects of living with Cancer. The psychological, physiological and (whats the "ological' word for the study of painkilling?) the whatever that word is, impact.

Of course I could tell you that we got a new puppy (aren't all puppies new) in January, which has taken my mind off the nastiness in my life,  but I won't bore you. Although I'm very popular with the nurses in Chelsea if I bring new photographs to show them.

Hector the Protector who is now 8 times the size of me in this photo

I could mention that my wife and 12 family and friends raised about £2500 by walking 10 miles across Marsden Moor in support of Renal Cancer research at the Royal Marsden Hospital. The money is going directly to the Doctors who look after me, which is wonderful.

I could also mention that my fellow workers at TSYS  have been holding events to raise money to help with our travel expenses to London. They have held cake sales, bottle auctions and a man called Lewis who I hardly know biked 450 miles to work over a month and raised a ridiculous amount of money for us. The whole money raising drive by my co workers was a huge surprise. Ive not worked since September 2012 so I've not been able to wind anyone up at work for such a long time. 

A lovely lady called Jayne Mooney rang me to tell me the news and I started blubbing over the phone. Bang goes the machismo, alpha male image at work. aah well.

Half a Person

So, how do you relax and not worry about the Big C?

I had recently been told that my lungs were clear, meaning multiple tumours had disappeared and that my spinal tumour had not got any bigger.
We left the hospital elated and stunned. What do we do now?. This was the first time we had received good news since I got this killer illness. We really didn't know what to do. The war wasn't over,  I was still to be scanned every 2 months for the next 3 years, anything could happen in any one of them. This last scan however, confirmed that this particular battle had been won by me. My body had miraculously taken to the new clinical trial drug and did what it was designed to do.  There had been no guarantee that the drug would work at all. This was a real fear of ours during October as my back continued to deteriorate.

There had come a time, deep into the first 2 months, after my fall in the bath, that my back started to strengthen, started to allow me to walk relatively normally. I still needed crutches or sticks, but the basic art of walking had improved dramatically since that fall about a week before the scan. We dared to dream that this slight improvement was an indication that something was working and indeed it turned out to be true.

I had put everything on hold, we had obviously talked about Christmas, however it was going to either be a Christmas with good news or a prospect we dare not even contemplate, off the trial and onto drugs with a 4 to 6 month average rate of survival. Thankfully it was good news and we could plan a family Christmas. How precious a gift is that to be given?


I had been slowly building up a massive stock of Star Wars vehicles and figures for my youngest son, I had started in late October and was picking up second hand toys for a good price. When I say 2nd hand, vintage Star Wars are still highly valued, there are websites out there devoted to every release of every Star Wars vehicle or figure down to the colour of its light sabre and number of articulating joints. As Christmas neared, the same stuff was going for double what I paid for it, so I take some solace from that. I do admit I probably over did it.

Logan would have a massive pile of presents, we are talking half a room of mainly 35 year old Star Wars based toys. He was expecting Lego. That was the gamble.
He had about 30 vehicles and around 150 figures to open.

I think I had a slight brain meltdown as I amassed probably the biggest Star Wars collection in Yorkshire. However it was good fun to be sending questions to grown men about the firing mechanism on General Grievous's Wheel bike. My most ridiculous purchase was for a pair of Chin Guns that were missing from an AT-AT Walker I had picked up. My son would be oblivious but, I knew... I knew they were missing and couldn't bear a future knowing the thing didn't have its premier weapon system.

Star Wars AT-AT Walker - Chin Guns protruding from under head of this cumbersome killing machine. That's me waving in the orange suit.

Royal Marsden Charity Walk

***Success! 13 brave women plus a phantom that appeared in one photograph, completed the Royal Marsden Charity walk across 10 miles of exposed rugged terrain. The wind blasted the girls all the way. It turned out to be a very difficult walk which asked big questions for each of the girls.

"Can I do it?",  

"Can I stand the wind buffeting me any longer?", 

"Can I eat a third double decker without anyone noticing?"

The walkers started at about 10:30 and they got to the Riverhead pub in Marsden at 4pm where food and beer was eagerly consumed. The fund raising didn't end there. A Royal  Marsden collection tin was passed around the large amount of locals in the pub who were enjoying the 6 nations rugby. A further £40 was collected from the generous locals.

Phantom walker

So far there is £1820 on the Just giving site. At least a further amount of £400 in pledges is due in, in the coming weeks. A great day, a day of personal and group achievements. A chance for new friendships and a slap up tea with local pint.

What could be finer 

than sat in the diner, 

having a jolly good meal.

More photos of the walk

************************************************

Each year, in March. Thousands of people get together to take on Cancer and raise money for the Royal Marsden Cancer Charity. They do this by walking 14 miles between the two Royal Marsden hospitals in Chelsea and Sutton.

There are people being treated at the Royal Marsden from all over the country, including me. regional events have been selected by the hospital, my wife,  Emma Giles and 11 friends have chosen to walk the appropriately named Marsden Moor in West Yorkshire. The walk is 10 miles long and the terrain has been described as very challenging.

Marsden Moor - A bleak but beautiful area that the girls "should" navigate successfully.

The route, what route the ladies will actually take may be dramatically different to this.

                          Emma and the Nee sisters, now known as Tricia Abbott and Ursula Price

If you would like to donate and help lift the girls spirits as they prepare for the walk, here is a link to the donation page.

http://www.justgiving.com/Emma-Giles2

I will post photos of the preparation and the event itself on this blog as we get nearer.

*****************Update 12th March 2014****************

As of Wednesday 12th March, the girls have reached their initial target of £1000. This is a fantastic effort from the team and you supporters, who, without you, would mean their efforts would go unrewarded.
Thanks for getting what we are trying to do here. Money is tight these days, more and more good causes need your money and I am well aware that household budgets can only go so far.
Having said that, raising £1170, 3 days before the actual event is truly amazing. 

Professor Gore and his team at the Royal Marsden can put this toward cutting edge research into Renal Cancers. The hospital is in London, however I am there every 2 weeks. You never know where the best treatment will be if you ever do, God forbid, get Cancer. Some people get great treatment at York and at Leeds, others may go to Manchester at Christies. It depends on where the expertise is for the specific cancer. Everyone is different.

To London And Back - What Could Be Easier!

The trial started at the end of September,  the agreement was that I travel to the hospital in Chelsea every 2 weeks for the next 3 years. I would receive the new trial drug that would be administered through veinous infusion. This process would continue to the end of the trial if I remained clear of new tumours and my existing tumours did not progress. I would be scanned every 2 months to check for progression. If progression was found I would be off the trial.

The travelling was a bit of a daunting task. I felt at my most vulnerable with cancer. London, was a busy place for busy people, pushing and shoving. Not for a man with a tumour on his spine who couldn't walk for more than 5 minutes without having to sit down to recover.

The trial paid for my travel expenses and crucially my taxi fare from Kings Cross to the hospital which kept me out of the Underground and the hustle and bustle of the city. I wasn't well enough to travel on my own and Emma would accompany me each trip, which we had to fund.  This was to cost us a lot of money but we had no choice. This could keep me alive!

I had travelled to London a few times with work and 9 years before I had chosen Central London for my stag do. I had peaked too early on the trip and was whisked back to the hotel, bizarrely on a cycle Rickshaw, quite early in the evening, completely inebriated. My best man, Ashley had dutifully got me to my room before I was sick. He made sure I was safely in bed and all cleaned up before he left me to join the others. Unfortunately, being sick had made me relatively sober so after a very short snooze, I was quite alert, I didn't have my mobile with me at the time so I ended up settling down to Match of the Day in my hotel room with room service as my friends partied the night away.

New - Cruel Summer on my Raleigh Bomber

The Summer holidays were finally here,  I remember the exhilaration I would feel as a boy of 10, sprinting out of school, knowing you had what seemed like an age till September came along again,  playing out from dawn till dusk, no TV, it was straight across to the local playing field to play football or cricket. I can't remember going home for lunch. There would be upto 12 of us. In the summer we would bring whatever cricket kit we might have. One of us would have a proper cricket ball and a bat. A lad called Ady had the stumps, bails, gloves and pads. He was the majority shareholder, when he went home, that was it, game over, the football would then come out.
We all listened to Botham's Ashes at Ady's as we were picking the kit up to go play. What an afternoon that was, his older brother would shout up the road that another Aussie wicket had gone down. A great days cricket ensued at Westbourne field after Messrs Botham and Willis had destroyed the Aussies.
A couple of the older boys would commentate on the game as it was being played. Any fall outs would involve a quick fight, the younger ones would eventually be pinned down, I was little Gilesy, my older brother was big Gilesy and it was his knees that would pin me down by my arms as various taunts and slaps were dished out - all part of the game.
One boy ended up with dog poo on his York City scarf one day and his dad came round and told us all off.
On hot days we would jump into the canal at Brayton. There was an old lock that gave you a 10 ft jump into the water, it would be straight out, check for leaches and jump in again, absolutely marvellous boys own stuff.

Raleigh Bomber, what a great bike, the geriatric mudguards let it down