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

Switch 30 years to my boys, 12 and 8. They rarely fight and rarely leave our sight. Its changed now, my oldest wants to play football but my youngest doesn't like sport. He would rather be inside playing Star Wars or Lego, he has to be coaxed out, sometimes, kicking and screaming, well almost. When they do go to the park, they are back in 30 minutes or so with some excuse for their early return.
We don't have too many kids of Fred and Logan's age up our street, so its usually texts swapped between mothers that allows the kids to go off (via a lift) and play somewhere. They don't do much 'cold' calling round for their friends. I used to bang on the door of any house that contained a kid about my age, whether I knew him or not . To the field was the cry and off we'd run.

In 1982 I got my first brand new bike, after years of cronks handed down from my brother or cousins. I got a Raleigh Bomber, the fore runner to today's mountain bike, my absolute pride and joy. Until one day when I passed some  BMXer's and they shouted Raleigh Bummer at me, I would ride home in tears.

Back to reality, the problem we had with planning the 2013 summer break was committing to holidays, we just didn't know from 1 day to the next what I would be like. We had already lost £800 in May after we booked a large cottage to cater for all of my immediate family (22 of us). I wanted to get everyone together for a long weekend. We chose a large remote cottage on the edge of a reservoir in the North York Moors.  I wasn't sure how many holidays I had left so I had offered to pay the majority of the money myself. Unfortunately I was rushed into hospital for my back operation (see previous post). I had taken out insurance, but having read the small print, it wasn't cut and dry as there were special exclusions for Cancer. The claim was taking a long time to be decided.

The kids, outdoor play dodging

We had the kids in Cricket club for one week, but that was all we had planned.

Sorting the holidays out depended on one thing, my health.

Our last meeting with my Oncology team in mid July had been a very difficult meeting for everyone.

The tumour in my spine had got larger, the big surprise was that multiple tumours in my lungs had appeared as well. My primary Kidney Cancer drug (Sunitinib) was failing. We argued that 'progression' of the cancer was because of the 6 week break we had gone without taking the primary drug due to my spine operation.  Since then however,  I had just finished a 4 week cycle on Sunitinib and the team thought despite the break, the cancer was progressing and Sunitinb was not protecting me as it once had. Which meant a new course of treatment would need to be found.

I was offered one of two secondary drugs. The Doctor talked about both drugs and we were given information sheets. I knew full well that once my primary drug was no longer working, my long term chances of survival, statistically at least,  were not very promising. All I was interested in was a survival time estimate. They ventured 4 to 6 months on average for both drugs. Some people last a lot longer and continue to stay alive on these drugs.

I argued again about another go with Sunitinib. The drug may be taking some time to reinstate its hold on the cancer, I suggested that another round of Sunitinib be taken and then a new CT scan be done to check progression. If indeed there was still signs of progression, then I would be satisfied we had given the primary drug every chance of working and we would need to switch to one of the secondary drugs on offer.
I was fighting for my life here. Over the last 8 months, I had become attached to Sunitinib and not in the addicted sense. Over the 8 months,  I had probably taken over 200 of these cancer fighting tablets, with water, at bedtime. Each time I would say a little prayer as I put the tablet into my mouth, "work ya bast*rd" might be one mantra I would use. I definitely had a moment each time, maybe by ruminating on the events of the day, foreseeing a bright future or just thinking about the precious halflings tucked up in beds down the landing. I depended soulfully and wholeheartedly on my cancer drugs because they were working and keeping me alive. Now there was a suggestion that they weren't performing, I felt it was purely down to the 6 weeks holiday I had off the drug while I had my spine stabilised. I also thought they had not given the Radiotherapy time to do its magic. I was desperate to impress on the Oncology team that given the circumstances,  I deserved one last shot.
Reluctantly at first and then more warmly as I poured my charm into the conversation (as if),  the Oncology team agreed and I was prescribed another month's course.

It was a bitter moment for us leaving the hospital. Progression to the lungs astonished us. I had no symptoms and it came totally out of the blue. My spine had not (yet) responded to the radiotherapy.
Maybe it would, however the pessimistic view I had about the chances from my Radiographer hardly inspired me.

The screw was being turned on me once again, was there anyway of putting the brakes on or better still, reversing the hideous situation I found myself in?

I had spent the last 2 months, post back operation, following all the advice, taking all my tablets, living as healthily as I could and yet none of this mattered. My cancer was spreading regardless.
Sometimes I would forget that this was an incurable disease. By following instructions I sometimes thought somehow that a doctor would one day say it was getting better. I was kidding myself, however it is hard to keep going with such a bleak prospect that I would ponder on miracle cures and positive outcomes occurring under our very noses.


This time last year I was wearing speedos on a French beach, having the time of my life with my wife and kids. Life, it seemed in those moments, standing up to my knees in the Atlantic Ocean, holding my wife's hand as we watched the boys laughing hysterically at the sheer power of the waves crashing down around them, couldn't get any better. 21 days after this photograph I had the first symptoms that told me I had cancer. Not a piddly little one but a 10 cm tumour, the size of a grapefruit on my kidney, that was eating its way up towards my heart. Unbelievable. Unbelievable.

We got home, I think we had got passed crying, Emma and I were good in these post meeting/cup of tea/ lets weigh up what was said meetings and we hurriedly threw one together. Over tea and digestive biscuits we poured over the facts given to us. Over and over again we tried to challenge what had been said and more and more we started to drum up the chances of the radiotherapy riding in like a conquistador and shrinking the back tumour. As for the lungs? a reinstated, re-invigorated course of Sunitinib would kick in and shrink the tumours. Happy days! yes!. except neither of us believed any of what was just said, would work.

Then we remembered our Doctor at the Royal Marsden in Chelsea. We had met him in December when I was first prescribed Sunitinib. Back then, we had sought a second opinion from him and although he had agreed with our Oncology team,  he did say if the primary drug started to fail, then we should contact him as he was doing a Clinical Trial down there that he called "exciting".
We emailed his secretary and arranged to go down to the Royal Marsden in Chelsea after I completed my 4 week dose of Sunitinib and I had my scan results.

We had a month to wait and see how well the drug responded.

If it had responded well, we would stay on the primary drug, if it had not, we would either stay with our Oncology team and move on to one of the secondary drugs or enrol on a clinical trial at the Royal Marsden.

We then had an appointment with the Orthopedic team that operated on my back.

After an X-Ray, the doctor confirmed the operation site looked strong. I told him about the pain I was in especially in my groin and legs and couldn't stand or walk without having to sit down after about 5 to 10 minutes.
 He told me I would be in considerable pain for a long time, nerve endings had been damaged and I would feel radiated pain through my groin and in my thighs. I would also suffer bone pain due to the damage to my L1 vertebrae and also I had steel rods drilled into good vertebrae. Finally I could expect cancer pain from my tumour which is a relentless dull ache.  Happy days indeed.

We decided to book a holiday at short notice, we stayed in a barn conversion on the edge of the Lake District and the Yorkshire Dales in the Eden Valley.
The barn was beautiful and was just what we needed.  A large slice of peace and quiet, fresh air and a bit of excitement for the kids.
We were able to get out a bit, the highlights were a visit to the Puzzle Place in Kendal which had some crazy optical illusions, so much so that I had to leave the family in there as one illusion bent my mind. The kids loved it.

I still can't work this one out, the kids were 10 ft apart

We also went on a boat trip around Lake Windermere, it was great to see the kids relax and enjoy the trip, smiles and laughs all round.
Largely though, my lack of mobility was turning me into an old grandad (no offence Grandads!).  We would go for a pub meal and I would have to leave before the end of the meal as the chair wasn't appropriate to support my spine. If it didn't have arm rests or if it wasn't padded then it gave me about  10 minutes tolerating the growing pain. It was difficult using a knife and fork at the same time as both hands and arms were off a supporting surface, therefore I would tend to lean on the table and use mostly a fork to eat.
I would find a comfy chair in the bar and sip water and wait for my wife to finish the meal they were half way through.

On a walk in the Eden Valley

Great shakes on the Lakes

This behaviour made us look like the odd family and it was very distressing for my wife. She deserved a peaceful break and every time we tried to do "normal", something would go wrong. There was also social embarrassment created as I would be sat in another part of the pub. I think there was a certain element of claustrophobia and aggrophobia creeping into my psyche as well. I didn't feel part of everyday life and would hit the escape button when I started feeling weird or my back was hurting.  I was almost waiting for the worst to happen. I had to abort 2 pubs and one puzzle place in 5 days.

We ended up eating back at the barn (Emma cooking) more in the holiday.
Emma would take the boys out for a walk round the immediate vicinity of the barn. There was still lots to do and things to see. As I couldn't walk far, everything seemed to be so limited, yet we had a good time, we brought board games like Risk, which nearly caused a riot. Fred is as competitive as me, which created an explosive clash. A quick headlock and scalp rub sorted him out.

A rare sunny day just outside the Barn. Kids kicking a rugby ball somewhere behind us.

It was time to leave the property, as usual the sun was blazing on the day we were to go home. We decided to split the journey by stopping off in Hawes on the way home, then Aysgarth Falls and finally fish and chips in Bedale. We also had to endure a traffic jam on the A1. All this made my back feel like a rusty accordion by the time I got home. I was in agony. That night I had shooting pains down my leg. I was getting worried about spinal cord compression again.

It was time to go back to our Oncologist.  We were told that the tumour had appeared to have stabilised in the spine, however the lung tumours were progressing. My doctor had also spoken with the Royal Marsden, they both agreed that my primary drug was not working, time to change.

So we set off for London to learn more about the clinical trial. Our alternative was drugs that statistically might give us 4 to 6 months of life.
We decided to drive down on the Sunday, stay in a swanky country hotel and then drive into London.

I booked Stoke Park where  they filmed the golf scene in Golfdfinger, it was a lovely place to stay, I wanted to treat my wife and arrive at the hospital as relaxed as we could be. We had forgotten about the drive into central London to get to the hospital the next day, Emma was driving, we were running close to the congestion zone on numerous occasions, one wrong turn and Ker Plunk.

We parked off Fulham Road, walked past Stamford Bridge, home of Chelsea FC, for a moment I was a boy of 10 chuffed to bits at spotting a football stadium, then I remembered where we were going and 10 minutes later we arrived at the Royal Marsden, I had been able to walk about a mile which was encouraging.

I am not sure what detail I can say about the trial other than it is a comparison study between a new trial drug and an existing on the market secondary drug.  There was a 50/50 chance of getting on the new drug. The decision was made randomly by computer at the study headquarters in America.  This was a worldwide study open in over 20 countries around the world.

Some trials are set up so the participants don't know which drug they are on. For this trial, I would know immediately which drug I would be on as the new trial drug was given by infusion to the patient every 2 weeks. If I selected the existing drug I would be given tablets to take every day.

First I would need to pass a medical to get on the trial.

The Royal Marsden recommended I try and get on the trial. If I selected the existing drug in the trial it would be the drug I would be offered by my oncology team anyway. Plus as it would be administered through a trial it means I would still have 1 remaining treatment to take if the drug failed to work. If I stayed on the NHS and didn't do the trial, I would not be eligible for an alternative treatment if this failed due to restrictions with the Yorkshire Cancer Fund. They only pay for one secondary drug treatment apparently. It's a postcode lottery. Some hospitals will offer further drugs, why it is not equal regardless of which hospital you attend is beyond me.

If I selected the new trial drug then it would be a voyage into the unknown, some phase 1 and 2 evidence showed promising results compared to existing drugs.  There are sadly no guarantees in this game.

I decided I had nothing to lose and signed up for the trial. My medical involved a brain scan, blood tests and general observations. They used the scans that I had recently to weigh up whether I was eligible. We went home, the evaluation would take upto a week they said.

Two more hurdles to get over. Passing the medical and then it came down to a 50/50 chance of getting the trial drug. This seemed such a perverse way to lead ones life. It was like some warped game show waiting for the wheel of fortune to turn and hit "New Trial Drug"

The first call came in - I passed the medical - two days later the second call came in, the tension in my voice when I heard it was the Marsden was palpable. She told me the result, I didn't understand, 3 times she had to re-phrase the result before it clicked - I had got on the trial! the relief was nearly too much for me. Emma and I were in the garden at the time and we both started laughing and crying at the same time, after a while I had to go to bed to calm down. I didn't know what was to come, whether my body would take to the new drug, whether it would work, I would have to go to London every 2 weeks,  There was a lot of ifs and how's and what's but it did feel like the best outcome I could hope for, Who knows what the future holds now...