May 2013 - Back to Black

May started quite nicely.  My lads had entered the "Leeds Run for All" event in order to raise money for a Cancer charity. 
We had chosen the James Whale Kidney Cancer charity http://www.jameswhalefund.org . James Whale provide specific Kidney Cancer support for patients and carers, they invest in training and research and make a real difference to the lives of all those affected with kidney cancer.
 Kidney Cancer is not one of the most common Cancers. Kidney Cancer amounts to only 4% of the most diagnosed Cancers in men and only 2% of Cancers in women, according to 2010 UK figures.

Fred entered the 2.5 KM run and Logan entered the 1.5 km run. The distance wasn't important, the fact that the idea had come from the lads was. They had set up a Just Giving page and we had used Facebook to let our friends know.  Incredibly their challenge had got a lot of attention. What also helped was the first couple of donators went big and set the tone for others to follow. More of that later.




We had also planned to watch our local Selby Rugby Union 1st team play in a national final! It gets better, the final was to be played at Twickenham in West London, a 90,000 seater stadium and the home of English Rugby.
We booked a hotel near Slough to stay after the game and then we would take the kids to Legoland on Sunday as a bit of a treat. If my youngest had a choice, he would prefer to be made of LEGO.

I had strong ties with the club, having played at Colts level (U19's, top try scoring forward may I add)  and had then played the first 10 games for the 1st team in my first and only year in men's rugby. I was a shy beanpole at the time and had a lonely time of it. I didn't know any of my team mates. At 18 I needed 5 pints of lager to communicate properly with grown ups, or so I thought. My other problem was I had no money, I was working on a Youth Training Scheme at the time which paid £28.50 per week. Of which,  £8.50 went to board. By Saturday I was penniless, so wasn't able to get to know my team mates very well. I ended up playing just the one season at Selby and then left to play football.
I did however continue to socialise at the club, I have a lot of friends there, each year I have entered the annual Stars in their Eyes competition, winning the first 2 competitions and completely bombing at the next 10.

Bee Gees winner 2001 - the tooth whitener won me the gig! God I loved that wig.

I was due for another scan of my chest and abdomen on the Thursday before the Twickenham weekend. My health was ok, I was getting used to the severe side effects of Sunitinib (my Cancer drug) and this weekend fell in a 2 week treatment holiday where my symptoms would usually lessen.
I still had a nagging pain in my hip area, which we believed to be radiated pain from my spine. The hip pain did seem worse during the 4 weeks taking the Cancer drug and did seem to ease in the 2 week holiday window. Someone mentioned that it may be the half life of the tablets that caused the hip pain. At the end of the day, without a scan, everyone was guessing. The scan results would be reviewed on the following Thursday with us, after this bank holiday.

The last 4 months had seen Emma and I continually trying to rationalise what an ache or pain might be. Over the 4 months, there were times where I thought I had Brain Cancer, Lung Cancer, Skin Cancer (from a black bruise on my stomach caused by the Tinziparin injections), Cancer of the Penis, Bone Cancer and the list goes on. Usually pains would slowly disappear, if they were persistent I would mention to my doctor. If they were alarming I would call the Oncology department.

The day of the final arrived. Emma drove me and the kids down to Twickenham armed with a Sat Nav to help us off the M25 and into West London.
The traffic was clear until we hit the M25, which is usual. I was feeling pain in my hip and pelvis area as I was cramped in a car for 4 hours. I reasoned that I would feel similar if I didn't have these dreadful problems so wasn't too concerned. We finally arrived, because of the traffic and issues with parking we were about 5 minutes late and the game had started.
It was just breathtaking to be there, what seemed the whole of one stand was full of supporters, Selby had a large proportion of fans and our colours, on flags and scarves, looked brilliant.

                                           

The game was thrilling, Selby played a positive running game, my youngest son, Logan was transfixed by the action, however it wasn't until early in the second half, after a converted penalty kick, that I noticed Logan was cheering for the wrong team, I quietly corrected him. The game finished with a Selby victory, a great achievement for the team and Richard Nicholson, the coach.
The Selby fans spilled out of the stadium and into the stadium surround area, It was a chance to meet up with friends who had sat elsewhere. I had to first, lay flat out on my back, to try to counter the pain I was in, no panic though,  the pain was explainable as I had driven 300 miles in the morning and then sat in cramped seats to watch the game.

Side on sitting as my legs were too long for the Twickenham  seats

My friends were already into a drinking session and planned to celebrate into the night. It's something I would normally be doing with them, so it felt a bit weird not being able to join in.
In the bar,  I realised how much my life had been turned on its head. It was probably my first appearance out, especially in a busy bar. I felt a lot weaker than before, my body had taken a hell of a beating but so had my mind. Cancer had made me physically weaker, it had also made me vulnerable for the first time in my life. I relied on people for the simplest of things. Being 6ft 4, I never really worried about situations, now I was feeling frail and exposed in the pub. I was worried about people coming to say hello and slap me on my back or a fight breaking out. I wanted to tell everyone my recent medical history as I tried to push passed celebrating groups around the bar.

It was time to go, we walked to the car and I remember my back started to hurt on the walk back, we got in the car and we had a twenty minute ride to the hotel near Slough.

The hotel was adequate and we decided to eat in their restaurant rather than go out, the chairs had no arms, which meant I couldn't support my spine if I needed to, other than leaning on the table, this then makes it impossible to eat your food. This is the lottery of eating out we were finding, if the chair didn't have good arm supports and a cushioned back, then it meant I couldn't spend any time in that seat. Having a tumour on my spine means I can't lean back into a seat if it is wooden backed as it tends to be right on the site of the tumour, which means uncomfortable pain.

I remember going back to the room in pain and a bit grumpy, we had had a long day and we had Legoland to look forward to the next day. The kids were giddy, my wife however, was aware that I was in quite a lot of pain.

I lay awake that night, my back had started shooting waves of pain down into my leg, My left groin was particularly feeling it. A real raw nervy pain that no position in bed would relieve, I had a sleepless night rationalising that this was due to the drive down and the squashy stadium seats. I did have breakthrough pain to take. If I had known, I could have taken more breakthrough pain than I was actually taking, however I had not been in this amount of pain since being prescribed it so I never asked about the upper limits and the regularity if I had an emergency. Note to self, always discuss new drugs fully with your doctor.

The next morning I had at least snatched a few hours sleep and this had revitalised me for the time being. We had breakfast in the seats without arms and my problems started again. 

Emma drove to Legoland. The walking and the anticipation took my mind off the pain only for so long, soon it did become persistent, I managed to go on one ride and that was it for me, I was happy to follow my wife and kids around and let them go on anything they wanted to. A lot of the rides had queueing lanes with wooden rails to keep the queues orderly, I was able to take my weight off my back by leaning on these rails,

By mid afternoon, I just had to stay sat down as much as I could, my wife was fully in charge of the kids by this point and I was somewhere in the vicinity. Later, we had arranged to meet up with 2 couples who I have known since secondary school, this was starting to stress me out as no one seemed to realise that I needed rest.

It got to near the end of the day at Legoland, the kids still wanted to visit the shop and go on one more ride, always one more ride, I ended up telling my wife that I needed to go back, We walked the long walk back to the car, I was in tears at this point, the pain was unbearable, I was exhausted with the day and having to cope with the pain throughout, I thought the kids hated me as they wanted to buy Lego but weren't allowed. I felt awful that I wouldn't be able to meet my friends for tea which I was really looking forward to. I got Emma to call my friend as I couldn't bear speaking to him. They would already have set off.

We got back to the car, I had more breakthrough pain, no difference, back to the hotel, I collapsed on the bed, Emma took the kids into Slough and bought us all pizza. That evening the pain was worse.

We drove all the way home on Monday, we had decided to call the hospital when we got home.

Our answer machine had a couple of messages from the Orthopaedics department, I needed to call them as soon as I got this message.

I duly called and a Doctor informed me they were worried about what last Thursday's scan showed, Could I come into the hospital straight away.

My wife and I set off as soon as we could find a babysitter for our kids, We didn't have a clue as to what they had found but we knew it was serious, in a way, I was relieved as the last 2 days had been hell and it saved us going through the GP route to be seen by the relevant hospital dept.

We arrived at the Orthopaedics department and were shown to a bed and the curtain was pulled. Immediately we were plunged into what must be a daily crisis environment for NHS staff, Another patient was threatening to pull wires out of his arm and his friend was telling him it was in a major artery and he could die, his reply was "I don't care". They both sounded drunk or drugged or maybe both.

The doctor finally came to see me and surprisingly asked why I was here, I told him they had requested I turn up today, to bring an overnight bag as something had been detected on the scan. The doctor knew nothing about this and told me the doctor who rang had finished his shift.

I had to regurgitate my story all the way back from last November. He asked me a load of questions about my back. The main worry was Spinal Cord Compression. If the tumour grows and touches the Spinal Cord then I could lose the use of my legs. They asked if I had lost bladder control, or had experienced pins and needles in my legs, I was comforted to answer no to all of their questions, he then checked the strength of my legs by asking me to push and pull in certain directions as he held my leg in resistance.

All clear, the Roger Moore test was next, he needed to put 2 fingers up my bum (left eyebrow raised 007 style)  and I had to squeeze hard, if I couldn't do this sufficiently he said I only would have 5-6 hours before I lost the use of my legs. I was able to squeeze sufficiently.

He then left me and went to look at the scan results and read the other doctors notes.

I was admitted for the evening and moved up to a ward. My wife left me when I was settled and I was to call her in the morning for an update, Emma was going to come and see me the next day at visiting time.

That night at about 1am I was awoken by the registrar doctor. He performed exactly the same checks  as the guy before, including the Roger Moore test!, He was satisfied there was nothing to worry about, he had looked at the scan results and he couldn't see much difference between the recent scan and my previous scan a couple of months before. He thought the pain was just a flare up from the weekend's exertions and would die down with rest.  He told me I would most probably be discharged tomorrow by the daytime orthopaedic surgeon as part of his rounds. With cases like mine, I may well be in hospital a number of times to check the cord vs tumour positioning and the same checks would be administered before surgery would be necessary. "Look at them, like you would an MOT" he said.
It was great news to go to sleep with, although it was late, I texted Emma the good news, not really thinking that the pain I was in, remained unresolved.

The next morning I was awoken for observations as per usual, had breakfast cheerily and waited for the Doctor to come and discharge me, soon enough, the Doctor arrived, he was a large friendly enough Doctor, with a soft Edinburgh accent. His accent reminded me of the broadcaster Kirsty Young who presents Crimewatch UK.

But wait!, what's this? I must have drifted off as I'm sure we were still exchanging pleasantries and suddenly the doctor is talking about a spinal operation. I ask him to start again.
It looks like the Registrar had made an error with his review of the scan, I know the registrar's are busy especially on a night shift, however he got my case horribly wrong, my hopes of a scot free visit to hospital dashed.

My spinal tumour had eaten most of my L1 Vertebrae, I had been walking around with a broken back, or at least a vertebral fracture for x amount of days / weeks. The spine was in a perilous position with a real chance of collapsing on itself. Structural failure!

Showing L1 vertebrae at the top of the Lumbar section. T12 and L2 vertebrae either side.

The only real option was to operate on the spine and stabilise it. This could be achieved by attaching metal stabilising rods to the good vertebrae either side of L1.  There was a view that the tumour could be removed during the operation, it was dependent on how big it was. Kidney Cancer tumours, or at least mine are prone to bleed heavily, if it was too large then removing the tumour would not be an option. They didn't want to "lose me on the operating table".  Unfortunately the tumour was too big, we would have to think of another plan of action for the tumour at another time, the surgeon would take a look at his options during the operation.

So on the 9th May I went down for my operation. The operation was successful, however as the scan showed the tumour had to be left in.

Intensive care after Spine Stabilisation

My "leggings" inflated every few seconds to help blood flow and reduce clot risk

On the 12th May it was the "Leeds Run for All" event in Leeds City Centre, I could see the crowd from my hospital window. The boys did very well, Logan finished 7th overall in his age group and Freddie too ran very well. The donations just kept coming in. There may have been a swell of good will as word got round that I was in hospital, I'm not sure but the final figure reached was an incredible £4700. An astonishing amount, our local paper, the Selby Times covered the story as well.

We were very proud of the boys and it was a great boost for me post operation.

I was finally allowed home on the 14th May. The main issue around the surgery was I had to stop taking my Cancer tablet (Sunitinib). This was because the drug prevented the healing process around the operation site. I had to go without taking any Cancer prevention drugs from the beginning of May to the middle of June.
What lay ahead was a course of Radiotherapy to hopefully reduce the size of the tumour so that we could operate, there would be less blood with a smaller tumour. If the Radiotherapy didn't shrink the tumour then there wouldn't be any other way of treating it.

A nervy few weeks awaited me as I recuperated from my operation.

I now had a 6 inch scar in the middle of my back to match the 8 inch scar in my stomach. I looked like a Magician's assistant after the "Sawing a man in half trick"  had gone sadly wrong.