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.

After you have twistled you would jump out and the next skipper would jump in. The risks were high, the rope could tear into your ankles or attempt to scalp you, then there was the kudos of completing the song as an accomplished skipper should do. It was one of the only things that brought my brother and sisters together, plus my sisters friends, some of whom I would have a crush on so any mistakes would be devastating for me as I thought I would go down in there estimations.

It was a very rhythmical, hypnotic game which I look back upon with fondness.

So what have been the highs and lows since I last posted. Well it has been a pretty uneventful time mostly until the last 2 weeks. I have continued to receive my treatment at the Royal Marsden.  I have now travelled down 20 times with a further 58 trips to go, all going well.

High

We had stayed over at my brothers one Friday last month and returned Sunday afternoon. On the voicemail was a message from University College London Hospital (UCLH) about booking an urgent MRI.

This was news to me. My last trip to the Marsden was only last week and no one had mentioned anything about an MRI. My next 8 week scan on the trial when I would get a MRI was supposed to be in mid July. In this game you don't want surprises, they are usually shrouded by bad news. We rang the number back but as it was a weekend, there was no one answering. We had to wait till Monday to find out what all this was about.

UCLH specialises in a number of disciplines, the voicemail said it was the Neuro Surgery Dept in Queens Square. We looked the hospital up and the website said it specialised in Brain, Spinal Cord, Nervous System and Muscles. 

I must say this message really spoilt our weekend.  My imagination was running away with me, "they must have found something so bad on my spine that they had called the big boys at UCLH to sort me out" the voice in my head shouted.

Why else would they go to a specialist hospital? they have Oncologists at the Marsden who deal with spinal tumours everyday. I retired to my bedroom, I do this when Im knackered or when Im stressed. Underneath the butch front?! I am a frightened little mouse when it comes to it.

Emma rang on Monday morning , it wasn't bad news after all, the Marsden were happy with how I had responded to the drug that they thought it was a good time to seek expert opinion on surgical options for me. Why hadn't they said anything before? They apologised for the mis communication, they had asked UCLH for an opinion and UCLH then invited me down for a face to face meeting. The Doctor wanted to see me and have an upto date MRI to deliberate over. Happy days.

We managed to move my Marsden treatment day to the same Friday which meant a very early start.

We caught the 6 :18 from Doncaster so we could be at the hospital for 8am. They wanted to do a CT scan and an MRI scan before the doctor's appointment at 10am.

Happy with our lot

The MRI was notable as I noticed my technician had an accent I couldn't quite identify. Being a nosey b**tard I asked him where he was from. He looked sheepish and said he was from Germany and he then apologised to me. I told him he had nothing to apologise for,  that Germany was a fantastic country, what was the cause of his back foot behaviour? the war? surely not. Anyway he was a vey nice fellow, but I didn't in my position expect to have to deal with self esteem issues as I sat in a hospital gown awaiting his command.

We finally got to see the Neurosurgeon. He was a guy in his 50s.  He made us both feel very welcome and cracked straight on with the meeting, every now and then he would break into dictating a letter as and when required, sometimes mid conversation. I must say, I was very impressed with his knowledge and efficiency.

Since my back surgery in May last year, my surgeon at Leeds has always said the tumour on my back was too big to operate. Apparently kidney cancer tumours bleed very heavily and he was scared I would bleed to death on the operating table. Every 2 months at our appointments, his attitude hasn't changed about operating. In July last year, I had a course of radiotherapy to try and reduce the size of the tumour but it did not work. 

Now the Neurosurgeon in London was telling us that it was operable, he would also remove any damaged bones and finally would insert a carbon fibre cage to stabilise my spine.

This was great news indeed. Finally someone with an appetite to have a go and get this tumour out of my body.

What wasn't clear at the meeting was the reason for the Marsden's referral. He didn't know if it was a pain management request, to look at straightening me up as my last surgery had left me slightly stooped or if it was to remove the tumour.

Letters were sent to my oncology team, my GP and to the surgeon in Leeds for more information.

What a great meeting, there would be risks to the operation. I have an 8 inch scar down the centre of my stomach and a six inch scar down my spine. As I have said before I look like the product of a failed magic trick. The Neurosurgeon said he would go in from the side this time. A couple of pre ops would be needed. Firstly to embolise the tumour, which means they cauterise any veins that have grown from the tumour to my body, thus reducing the amount of blood that would be lost.  They would also put a filter in my Vena Cava to prevent large clots of blood reaching my heart and lungs and in doing so preventing a Pulmonary Embolism that I had when my kidney was removed.

We were thrilled when we walked out into the London sunshine that morning. At last, proactive, positive steps were being taken by my medical team. So long before we have had to push and argue ourselves to get anything done, mainly with previous teams.

Trolley Dolly (heh heh that fits with title)

We caught a taxi to the Marsden. At our meeting with my doctor and the trial nurse we were told more about their reasons for involving the UCLH.

There was 2 ways of looking at my situation at the moment, 

1) We could continue with the Clinical trial as it had been successful so far, let it run its course for the three years and in that time, hope the spinal tumour starts to reduce in size and eventually disappear.

2) The trial had been successful so far as it had got rid of the lung tumours which are the most dangerous to worry about. My spinal tumour had shrank slightly, but the last 2 scans showed the size had stabilised. What if in the future it were to start growing? It could grow into my spinal cord and paralyse me instantly. It is also in close proximity to all my major organs, terminal damage could be caused if left to grow. So why don't we look to remove the tumour completely, by surgery while I am relatively fit. It would leave me cancer free and I would continue to be on the trial once I recovered.

These were big questions. My life is at stake after all. We agreed that we needed to gather more information. For instance I should have a PET scan that would show how active my spinal tumour area was. It would show up any other signs of cancer in my body as well, which on one hand would be good to know as it would need treating, but on the other might jeopardise my trial.

The other thing that we needed to progress was an ok from the drugs trial company. Having an operation might breach the rules of the trial. This could be a stumbling block as trial rules have to be set in stone.

I will let you know how this progresses over the next few weeks and months. at this point there is no great hurry, a decision on whether to operate would be made once all the pieces of the jigsaw have been assembled. It would be great to have the tumour removed, however I don't know how risky it would be. What if it was a 50-50 chance of survival, would I risk it? would the hospital let me.? Only time will tell what is in store.

Low

Emma and I never watch TV together. We have a TV in our bedroom and access to Netflix and Sky Box Sets, loads to choose from, yet its never happened. Emma's tactic is usually to cuddle right into me so that I can't see her eyes and then its ZZZZ street all the way for her. I have tried Breaking Bad, The Wire, The Sopranos, Game of Thrones, The Borgias and none really have connected. Although Emma is always on  the move and can't settle to watch telly much.  I am desperate as I am sick and tired of couples telling me what a great shared experience they had watching back to back episodes of Sons of Anarchy for instance. I wanted a bit of that.

We had made progress on the box set experience as a family when we all started watching 24 Series 1. I thought as it was 12 years old, it might be tame enough for my 12 and 9 year old boys. Emma watched them all, we did squirm at some of the adult themes but I think we got away with it and crucially Emma was now up for watching more box sets.

Before cancer - team Giles

With the launch of ITV Encore we downloaded the whole 8 episodes of Broadchurch, I know its ITV drama, but it is a true masterpiece of suspense that keeps you guessing all the way.

We were shoeing the kids to bed for 9pm and got into a routine of watching 2 episodes in bed a night, which is what we were doing last Wednesday. We were into the second episode when I noticed I felt cold around my neck all of a sudden, the next thing I know my teeth started to chatter, then suddenly I am into a full blown shiver attack. The muscles in my torso were all tensed fighting this core coldness. My teeth were chattering so hard I was worried that it might cause dental damage. I could do nothing to stop the shaking and I couldn't stop tensing my body. I was freezing, I asked through a very tense jaw for Emma to put my track suit bottoms on and then my trackie top. She also lobbed a few more blankets on top of the bed. The excellent Broadchurch was a distant memory, all I could think of was trying to keep calm, try to take deep breaths and bring myself out of this attack. I couldn't. Soon I had a skiing wooly hat on, a scarf and more covers. Emma called 111, wasn't happy with their response so called the Royal Marsden who immediately told her to ring for an ambulance.

They mentioned it could be a condition called Neutropenic Sepsis which is when my white blood cells are low. People receiving Chemotherapy are more susceptible to this so Emma mentioned it straight away as the first responder arrived.

I must say what a good idea from the NHS to set up a first responder service. For those who don't know, when you call for an ambulance, you might be waiting 20-30 minutes depending on where the nearest free ambulance is. The first responder works alone in a car and is able to get to an incident very quickly and start what could be life saving treatment before the ambulance crew arrive.

That night the first responder walked into my bedroom and must have thought he was on the set of a Wallace and Gromit film. All he could see was a double bed with a mountain of blankets. Two feet stuck out of one end and a Wheres Wally wooly hat stuck out the other with a labrador looking on puzzled at his masters appearance.

He quickly told me to remove all blankets, the hat , the scarf, track suit etc so that I could cool down. I was running a temperature of 39 and needed to chill. This seemed counter intuitive as I was fricking freezing, nevertheless I did what he asked and within 5 minutes my chattering had stopped, leaving me with a massive headache. The ambulance team arrived. We had a slight problem as it was gone midnight at this point with 2 sleeping boys in their bedrooms and an agitated dog. Luckily Emma's Dad answered the call and came round straight away. He stayed while Emma and I went by ambulance.
At A&E, blood and urine samples were taken, Emma relayed the message from the Marsden to check for Neutropenic Sepsis in the blood, it came back negative, as did the urine sample. I obviously had an infection of some sort as my blood pressure was very low and my temperature remained ridiculously high. They gave me a chest X-Ray which was thankfully clear. They just couldn't find a reason for my attack so they gave me a general antibiotic through IV which would fight most infections.
They put me in a side room which is always a good start to hospital life as you have a bit of privacy and you can get on with recovering. My blood pressure kept low which was a worry, if it stayed under 90 I would have to be moved to a high dependency unit where medicines could be administered that would raise my blood pressure but I would need to be monitored closely. I didn't fancy that at all.

Between treatments , relaxing in Hyde Park

By day 2 I was making slow progress with my BP, that night at about 2am a nurse came into the room to tell me I was being moved onto a general ward  (aaaarrrggghhhhh) as someone else needed isolation. It seemed my luck was out, I was moved next to an old gentleman who sadly was in a very confused state and didn't realise it was the middle of the night. He proceeded to ask if I was Margaret for the next 6 hours. Margaret was his wife and despite curtains drawn between us and the fact that it was pitch black outside, he kept talking to me. Mostly I was Margaret, then I was Susan who I think was his daughter and finally "is that you Roger?" He was getting himself into a right state, asking me if they had had an accident or if they were all dead. I had to keep telling him I wasn't who he said I was. That he was in a hospital and that his wife wouldn't be visiting him as it was 4:45 am.
The next morning he kept trying to climb out of his bed as he thought his relatives were wandering about in the corridor. It was quite touching to hear how much he cared for his wife and finally he was moved to another ward. Soon enough I was too. I was moved to the Oncology ward which is a real step up in quality from the general wards. It had air conditioning, each bed had free TV which was handy for the world cup. The ward was new, clean and well looked after and the nurses were very nice. I wanted to be at home but at least I was comfortable here and could look forward to a good nights sleep. There were 2 guys already on the ward and they kept themselves to themselves. I got talking to one guy who was in for a biopsy. We swapped our stories and instantly developed a kinship with each other. We are in a club that both of us don't want to be in. We have similar struggles, hopes and fears. When you meet another cancer sufferer, I tend to have an instant respect for them,
It turns out the two guys both worked for different funeral directors so we laughed at the omens at work.

My stay in hospital was dependent on my blood cultures. When they took my blood on arrival, they let them grow for 72 hours and then test them to see if there was a specific infection at the time of my arrival. If there was, I could be given specific antibiotics to fight that infection rather than the general one. By Saturday morning my obs had settled back to normal including my blood pressure. The doctor was aware that I wanted to go home. He let me go even though the blood culture was only up to 48 hours. He had checked the culture and nothing was showing. He said he would let me go home on the proviso that if there was anything wrong at 72 hours, I was to come back in. Deal.

Rest assured - Hector is here to protect us

So thats about it folks. You are well and truly upto date. I have taken the last few days very easy and do feel weak, but every day I feel stronger.

This is the week I hear of a colleague at work who has sadly passed away with Cancer. A lovely warm man with a young family.

There is no logic to who gets Cancer and how you get it, I guess you have to keep listening to the advice given, go to the doctors as soon as you suspect anything or have persistent symptoms, however mild you may think it is.

Cancer needn't be the end of the world. More and more people are getting cured of the disease. Breakthroughs are happening in a lot of cancers now.
Of course there are too many good people taken by the disease. You can't escape some celebrity or famous person who has died of Cancer on the news these days.
However you must never stop believing, Stephen Sutton showed us such a unique quality in his fight with cancer. He refused to let it get in the way. He was such a brave fighter. He always had a smile on his face. He had a burning defiance to never give in to the disease right up to his death. An incredible man.
In cancer wards right now there are incredible people who just carry on trying to lead as normal a life as possible despite the disease. The other guy on my ward was seriously disabled with his mobility. He was in a bed furthest from the ward toilet. You would first hear him grunting as he slowly and gradually sat up and then would swing his legs down to the floor, then, with the aid of his zimmer, slowly and painfully pick himself up into a standing position. He would then start a very slow shuffle to the toilet, breathing very hard. The whole thing took about 10 minutes from start to finish. Now this guy could quite easily ring for a nurse and she could pass him a urine bowl and he needn't leave his bed. Instead he decided to put himself through what sounded like one hell of a painful ordeal to get to the toilet and to then do his business.
That is a man who is determined to stay in a routine, who refuses to let Cancer beat him, who is saying Fu*k you to Cancer. No pain no gain. That man and so many more men, women and children are my heroes. I am in a club with them and we are all trying to beat this thing, along with our families, friends, our medical teams etc. One day it will happen. We need to keep believing, keep raising money for cancer research and we all need to think big.