December 2012 - Progression found

I had a quiet November, I wasn't strong enough to leave the house, plenty of well wishers came. My wife soon realised she didn't like popping into town in case she saw someone she knew, as invariably, people would stop her to inquire, this is obviously a natural thing to do and we know everyone wants to pass on their regards, however, for Emma, it was painful and upsetting for her to recall the story again and again. A lot of people who meant well would imply that I didn't have a chance (in so many words) which wasn't nice for Emma to hear, or they would regale a story of a dead relative who had Cancer.

Emma and my Christmas Do, larging it on sparkling water.

I had a district nurse who would come round to change my wound dressing but other than that we were left to our own devices. We didn't think of Macmillan and weren't sure what they could offer in my situation. We had been given leaflets, but it was one piece of information you are given among many.



I had started to develop lower back pain across the pelvis, which at times was very uncomfortable, I was also on Warfarin tablets to keep my blood from clotting. One of the procedures the surgeon had performed during the  Embolectomy was to put an umbrella device (it looked like a wire claw, the size of a wine cork) in my Vena Cava to stop big clots from travelling up to the heart, Warfarin was being used to dissolve the rest. The process for using Warfarin is blood is taken at the Warfarin clinic in Selby Hospital (amazingly busy waiting room) and the sample is sent to York Hospital for analysis. A dosage is then calculated for me to take daily, they will ring up to inform me. Every 3-4 days I go back to Selby Hospital for more blood to be taken and same process continues.  Over time the dosage amount stabilises and longer periods are allowed between blood taking.


We attended a follow up meeting with our surgeon Dr Prescott. They had previously performed a biopsy and the meeting was to inform me what grade of Cancer I had, using the Fuhrman rating. The scale is between 1-4. 1 being the slowest and 4 being the fastest growing cancers. I can't describe how it feels to travel to a hospital, sit in a waiting room for however long it takes, walk in and exchange greetings, knowing full well you were about to receive life or death news. You would acutely study the doctor's manner, analyse his words of greeting for any clue as to what he was about to say.
Unfortunately for me, my cancer was a 4, the fastest growing kind. Again, the worst news possible, my wife, by my side as always, taking in the news with me. Squeezing my hand. At that point I felt like a failure, Emma had married a dud, I was sub-standard. For the last 3 months we had received the worst news or the most horrible things had happened to us. The doctor, was very good and tried to encourage us for the future, recalling people who had survived a long time. We said all the right things, went through the motions and slide out into the chilly December day. I remember the sun was shining. slightly brighter than my eyes could take.

The next key event was for me to go back to Leeds St James for a simple procedure to take the umbrella out of my Vena Cava. It was booked for early December, the operation itself was similar to before, a camera and this time, a gripper would be inserted in my groin under local anaesthetic and the surgeon would push the instruments up my Vena Cava, grab the umbrella and pull it out, It was designed like an umbrella so that it can fold and open when necessary. This normally would be a day patient  procedure, because I was on Warfarin I had to go into hospital 3 days before so that they could gradually thicken my blood sufficiently so that I wouldn't over bleed. I would also need to stay in a couple of days after the op to thin my blood sufficiently back to its previous levels, to protect me from more clots.

I arrived in hospital complaining about my back pain that had gradually been aching more over the previous 2 weeks, It seemed to hurt in various places, the doctors decided to give me an MRI scan so they could work out what was going on. After another day they confirmed to me that there was a tumour on the L1 vertebrae of my spine. This mean't the kidney cancer had spread, or metastised. Many people had recovered completely from kidney cancer. However when kidney cancer spreads to other organs, there is no cure out there currently, only drugs to keep you alive as long as possible.
This was the worst news possible. I can't remember telling my wife and family, horrible nasty moments like these should not be something a 41 year old happy family man should have to endure. I felt like a failure.

A few panickey looking junior doctors came to my bed over the next day or so, none of them effectively spelled out my long term prospects, if they were told to do so they failed, it was as if I should know what all this meant. To be honest I had sort of switched off from it all, the body I loved so much and had served me so well through my life, which had got me through the kidney cancer removal (Nephrectomy) and had kicked hard to allow me to survive the Pulmonary Embolism had now, it seemed, given up and had allowed the spread of this disease. I know this isn't physiologically correct, but that is how I felt. Suddenly I had another visitor, in walked my Oncologist and yet another student doctor. I have nothing against student doctors and wish them all the luck in the world, its just when you have had news like I had, you do get fatigue from all the faces and introductions.
This encounter immediately became a sit up and listen meeting, This lady was straight to the point and in very fine detail spelled out what was going on and what that meant, I always remember the cold way in which it was delivered, I only rememberr a couple of quotes from the meeting...

"You need to get your papers in order..."

"When it comes, the end will come quick..."

"I can help complete a form if you have critical illness..."

Finally someone had told me exactly my fate, she hadn't specified how many weeks, months or years I had to live, but she had laid it all out for me. Statistics quoted months rather than years once kidney cancer spread and I was reminded that I had the aggressive strain. On my side was my age, Kidney cancer usually attacked 50-80 year olds. I was relatively fit and 41when I was diagnosed.
The shock of this meeting was made all the more startk due to the failure of the previous doctors to speak clearly enough about what spread of kidney cancer meant, they always preceded their words with "Im not an Oncologist and she will come later on to see you" but they failed in giving me a straight answer, pussyfooted around, you could tell by their eyes, what kind of an exchange I was going to have with them. I was discharged a few days later. I was given dates to return for radiotherapy, they wanted to give it one big blast to try to kill it or at least stem its growth. The danger with a spinal tumour is how it may impact the spinal chord, if it were to grow in the direction of the chord it could cause paralysis of the legs. This wasn't an immediate threat at this time.

At Logan's nativity play

The next week I returned and had my radiotherapy, It only took about 10 minutes, with 9 1/2 minutes of that aiming the machine. This was going to be a big dose of radiotherapy that could have immediate side effects of nausea and diarrhoea as the beam passed through my stomach and bowels.
I got back to the car and felt ok, however as soon as Emma started driving through Leeds I started vomitting, We had come prepared and had brought bags just in case, it lasted for about 25 minutes, poor  Emma drove home and said only caring words whilst trying to concentrate on the road.
I didn't regain my appetite for about a week, anything I tried didn't stay down for long, I was already thin, I was getting thinner through the week. We were told the back pain could get worse before it got better and would take 4-6 weeks to really tell if the treatment had been successful. My daily morphine levels were creeping up, anti nausea, anti diarrhoea, indigestion tablets were being introduced.

We met with my Oncologist, she recommended a course of drugs called Sunitinib (commercial name Sutent) which is the primary drug of choice for treating Kidney cancers that have metastised or spread. Sunitinib may help slow down and in some cases, stop the cancer's progression. It is not a cure and not all patients will respond at all to the drug. Eventually the cancer will find a way to breakdown Sunitinib's defences.
I remember being angry at being put on a drug that didn't have a chance of curing me, A human being's natural primal, instinct is to stay alive and if cornered, fight. Up until this moment in my life, whenever I had a problem, there was always someone on hand to go to who could help, Mum and Dad, friends, teachers, police and doctors to name but a few.  Now there was no one in the world who could help me get better. It didn't matter if I was a billionaire or a beggar, This was a very lonely, desolate time. Christmas 2012.

My oncologist explained to me what my new routine would be. I would take 1 Sunitinib tablet every night for 4 weeks, I would then have a 2 week holiday to give me a break from the harsh side effects. During the holiday I would have a check up with Oncology after each round of treatments. Over the  4 weeks, as the levels in my body grew, the side effects would grow and could be totally overpowering, each person reacts differently. some don't experience any adverse affect.

The list of side effects was enormous, there were possible adverse reactions from head to toe , such as

• hair turning white
• diarrhoea
• nausea
• fatigue
• constipation
• shortness of breath
• fever
• coughs
• Serious liver and heart problems
• High blood pressure

On the plus side, Sunitinib keeps thousands of people alive far longer than they would be prior to its release. People can lead relatively normal lives on Sutent. I have included a link to the Sutent website. My comments in this post are to try to describe my feelings at this point, going from a healthy man 3 months before to a Cancer patient who has no hope of a cure. 

Link to Sutent site http://www.sutent.com

I came away from the meeting not wanting to believe this was the only course of treatment. We discussed this with our close family, we wanted a second opinion, just in case Leeds Oncology had missed something. After all we were talking about a life. This led to my Mother in Law, Annette speaking to the Dean she worked for at York University Business school. The Dean used to work in the NHS and knew of a Doctor who was one of the leading lights in Renal Cancers. His name was Doctor James Larkin who was based at the Royal Marsden Hospital in Chelsea and Sutton in London.
We asked Leeds Oncology to send down my scans and history to the Royal Marsden and an appointment was made for the 28th December.

We travelled down to the Royal Marsden in Sutton, we decided to drive down the day before and stay at a local hotel so it would be less tiring for me.
The hotel had a pool and spa, I remember being very self conscious and kept my dressing gown on around the pool and read a book. I was painfully thin, being tall it extenuated my rapid weight loss and I could barely look at my reflection. I also had an angry 8 inch scar down the middle of my body.
I plucked up courage and did have a swim, people were polite enough not to point and stare at me which was what my imagination thought would happen. I quickly realised I couldn't bare the cold water. I went back to my lounger and Emma had to pile on towels and dressing gowns over me as I had a tendency to go into uncontrollable shivers.

The night before the meeting with Dr Larkin at a swanky hotel.

The next day we managed to find the hospital in Sutton easily enough. The meeting itself only lasted 45 minutes. Doctor Larkin had studied the case and unfortunately agreed with Leeds' diagnosis. Despite the bad news, Emma and I were both struck by his more positive style than what we were used to at Leeds, we got the impression he wanted to get stuck in. He did offer us an olive branch at the end of the meeting. He said he was starting a clinical trial next month that he was excited about, he couldn't elaborate as it wasn't a done deal. He urged us to contact him again when our primary treatment (Sunitinb) started to fail,

We came away dejected but at least we knew there was no other option available to us. It had been
3-4 weeks since the spread had been identified, it was important now to start on the Sutent as my body needed protection.
We ended the year seeing it out in a hotel in Chester, the lads love hotels with pools and we had a lovely trip to the zoo planned for New Years Day. I remember the Orangutang in the photo climbed up and stared at us all through a window. A very peaceful moment to share with the family.

At Chester Zoo

A nosey Orangutang, or was it us that were nosey?