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.

I could also mention that my blog and story featured in a double page spread in the York Press in March. The reporter asked me to write 800 words, I gave her 2000, we settled on 1200.  Emma and I  looked online and were the 8th most popular story on the York Press website for a fleeting moment but we soon drifted to number 12 then 14 behind a "Ladies bike for sale", then we were history.

It was much the same feeling when I used to get upset after The Smiths released a single. It would invariably debut at No.23 and I would be there in the bath next to my sister's bedroom as she played the top 40 loud on Sunday evenings. I would be so peeved when they went down after the 2nd week and then the week after not feature in the Top 40 countdown with Bruno Brookes at all.

I would be buoyed by the fact that Meat is Murder LP had got to No2 in America. All this loyalty for a band I never saw live. Indeed I saw Morrissey play at Old Trafford Cricket Ground in the early 2000's and he grumpily went through a set of half baked new stuff with some occasional Smiths songs that he seemed narky having to play. Talk about the boy with the thorn in his side.

Anyway back to our story, another scan passed with good news.

The train home, however was hardly party central. We weren't sat there with champagne, arms intertwined, looking deeply into each others arms, instead we were almost staring into space, trying to digest the news. If this scan was a one off , it would be great, however this was just my second scan with 16 to go. I had hardly beaten the thing.

The fact was, scan time left a profound effect on Emma and me. The build up was usually horrible.
The day itself was grimly undertaken, the results agonising to receive, then we were ushered out and off to Kings Cross again. Back to life, back to reality.  Two hours home on a crowded train. I would look at the commuters around me, living, what seemed to me, fast, energetic normal lives, I wondered what it would be like, travelling home when or if, we got bad news. Its hardly a private place. This was my thinking despite the good news.  I had sub-consciously slipped from an optimistic strong minded guy into some morbid, pessimistic fatalist.
It was like supporting a football club who were already relegated, despite games still to play in the season and suddenly we win a match. I would be happy for 90 minutes, then the bigger picture roars over you again like a tidal wave.

Our reality, travelling home was that we needed to sort out picking up the kids and tomorrow is schoolday. Life goes on, before, during and after our scan while we are in this bubble of hope, then  relief and then through the process of returning to normal.

I realised I was under a cloud, I wasn't doing anything between the next scan it seemed, 2 months of sitting with any visitor that came by, talking about the last scan, my cancer history, my bad back, inept professionals, my next scan. I knew full well I needed a positive mind to help me battle this disease. however it just wasn't happening.

Everything you read on cancer tells you to keep a positive mental attitude.  Upto 65% of cancer patients do report heightened feelings of anxiety and depression, me being one of them. Just how are you supposed to cope with an incurable disease and especially one that has caused permanent, painful damage to my spine? How do you cope when you have 2 extraordinary children?

Before Cancer I was assistant coach for my boy's team. Fred is No6. I hardly missed a game.

Mindfulness techniques claim to offer successful intervention for negative, psychological thought processes that cancer can cause.
Mindfulness is the awareness that happens when you consciously and open-heartedly pay attention in the moment, letting go of judgement and pre-conceived ideas.
This can be done through meditation or even just by slowing your life down, being aware and appreciative of your surroundings, for example while you eat a handful of raisins (bear with me), allow time to study the beautiful detail of its design, think about its life on the vine as a grape in the hot sun, part of a larger grapevine, surrounded by thousands of other vines and millions of grapes. An occasional Pacific sea breeze rushing through the well tended field, I could go on.  This process is allowing you to clear your mind on everything but the raisin, 21st century life encourages the wandering mind. If you watch TV you will be exposed to 4 minutes of adverts every 20 minutes or so. In those 4 minutes, there may be 7 or 8 products, a quirky new advert, one with a catchy tune and mostly adverts with annoying meerkats or robots saving us hundreds of pounds, you've also parked the questions and information from the programme you were watching until it starts again,  then there are the added thoughts which grow stronger as the evening grows later,  that there is the ironing to do tomorrow, have we enough pack up for the kids lunch?, then there are the thoughts regarding work tomorrow. Is Aunt Ethel ok in hospital, is the MOT due. The mind flits from one nano second of thought to the next, 24 hours a day. Just by thinking of the raisin you hold in your hand allows you to switch off temporarily and relax without the din of everyday flirty thought getting in.

Meditation can be done just be lying on the bed and listening to calming music. If you have a smart phone you can download apps that will help you meditate about Cancer. They gently help you use your imagination and suggest that your immune system is a shining strong army and you are going into battle against the evil cancer army, who are puny and pathetic and suggests that the cancer gets a good kicking from your strong resplendent immune system.

I have tried these methods and there is no doubt that meditation is a powerful tool. You can definitely achieve a deep relax, Your mind feels like its slept soundly for 12 hours, your muscles feel well rested. Its better to try this in an empty house. I have had to endure trying to drift off while my youngest has pushed his cars round the Brazilian Grand Prix, or through my older son using the back wall as target practice for his football. However the power of suggestion of an immune system army really helps you visualise the fight at a cellular level and helps you feel not only rested but it puts you directly in the fight against the Big C.

The issue I have, being a fad man,  is having the motivation to do this regularly enough.
Was Mindfulness all I could do to help me come to terms with my situation. What about a Psychiatrist?

All of my "let's get me sorted" thoughts were suddenly put on hold.  About a week after my January scan I had a bout of sickness and diarrhoea. I started with a very strong bout of vomiting on Sunday night and then in the early hours a horrendous bout of diarrhoea, so severe that I couldn't actually hold it in. Which had never happened to me before. I was having showers at 5 in the morning to clean myself up. This lasted for days before the drugs prescribed to me kicked in. I started eating normally about 5 days after my sickness had first begun. A couple of days later, just as I thought I had got over it I was  back to square one. I was being sick with the return of the diarrhoea. Once again I could offer no defence to the seeping, watery river. It was as if  someone had given it a 24x7 pass to leave my body without needing to ask me. A very rude lodger.

We rang the Royal Marsden as we were worried it might be complications with the trial drug. There was a chance that I could develop Colitis triggered by the immune system which could be a very serious condition. So much so that it is stated in the trial contract that if I did develop Colitis, I would have to leave the trial.

Thankfully this attack had all the hallmarks of the Novo virus which had not properly gone away and I finally recovered. I had lost about 4kgs all in all.

This had certainly shaken me up and put me back. It was no good for my increasingly foul mood.

There were other gaps in my care that needed addressing. I didn't have a case manager who oversaw all my care. I'm not sure they exist on the NHS.  We were left to keep all the support teams, now dotted across the country informed if necessary of my current state. Emma and I felt alone in this respect.

All I was regularly seeing was my Macmillan physiotherapist called Jan. She is great and had given me spinal exercises and provided kit to help me out. What I wanted however, was physiotherapy based on the information from my MRI and CT Scans.  Macmillan couldn't provide this information.

 I had heard about the Team Sky cyclist who had fallen off his bike and broken his back recently. The report then went on to say he would be back riding in a year. I wanted some of what he was getting. Why couldn't I have access to a team who could work out an action plan based on my upto date scans, what exercises would I benefit from and which might put me back a bit.?
We raised this with the Marsden and they did have a Cancer Physiotherapy team in the hospital and it would be easy to arrange sessions on the days I came down for my treatment. Perfect.
Again it was a case of if you don't ask you don't get. The very next visit I was told there was a slot open for me to see a physio that day.

The session started well as the physio had said she had looked at my recent scans, Brilliant, she then asked me if I minded her examining me to see what my manoeuvrability was like. Again, great.
The only problem was she wanted me to take my shirt and trousers off. There I lied in my white Y fronts, like a stunned rabbit,  performing a series of ever-growing elaborate stretches. All I will say is I will take a pair of shorts next time. I wouldn't wish the sights she would have seen on anyone.


I had also slipped with my pain killers. I wasn't living an on the move lifestyle. I was getting out of bed to go sit on a settee all day. I was doing this because my pain was stopping me doing close on anything, however I was ploughing on with the same amount of tablets, not thinking there was help at hand. I wasn't making the most of my time. I had become a couch potato, giving up on doing much in the day because of how my back would flare up.  I had been on strong doses of morphine painkillers since 2012. I was also on high doses of pain killers that dealt with nerve pain.
The odd time I had forgotten my pain killers, it had hit me like a sledge hammer the next day as my general mood plummeted.
Emma and I both felt an increase in pain killer as a negative step. What did it signify? Was it the Cancer on the march that meant I needed an increase? I took my Morphine tablets twice a day, at breakfast and at bedtime.  I also had some liquid morphine that I could take during the day if I needed it for instance before a walk or a long journey I could take some liquid morphine that might last me a few hours to smooth over any spike in pain.
Again I didn't tend to take much of this as I had got it in my head that it was a negative step and might be a sign that Cancer was returning. This of course is irrational thinking. However it didn't stop me putting up with pain that I didn't need to endure, both when I was outdoors or just sat down on my settee.

Long days at the Marsden between treatments - Yes it is the 1977 Man Utd away kit.

This is a product of not seeing my GP regularly, not having Macmillan support since September last year and my own slanted logic that has been allowed to flourish.

I finally decided to do something and made an appointment to see my GP. Sometimes it is difficult to see the same GP as practices can put forward the next available GP when you book. I would suggest you ask to see the same GP  if  you are unlucky enough to be diagnosed with cancer as your case could well get complex, so for continuity reasons alone its a good idea.

 My GP asked me what pain I was in now as I sat in front of her from 1-10. She called it "background pain", one being no pain and 10 being eye boggling pain. I replied "2-3" thinking that was pretty good.

Generally I was in immense pain on the move, it would grow and grow as I walked and I could manage 50 yards on one day and a half a mile the next. I could never call it. If there was a park bench then it would relieve me somewhat if I sat in a certain position. I have also developed a specific lean on my walking stick that relieves the pain a little too. Also, I would be in great pain after a shower and also after a 10 minute sit down on the lavatory. I still to this day have to lay out on my bed exhausted after a shower or toilet stop. Generally however, if I had a comfy seat with an arm rest and a cushion to provide lumbar support then I was relatively happy.

My GP then said something that seems obvious but hadn't occurred to me. She said that tackling my background pain was very important as this was the pain I was feeling most of the day. I  should be feeling a 0-1 pain level.  If I am sat around with 2-3 pain then I am likely to turn down a request to go for a walk as I am already feeling in pain.  If I have no pain then I am more likely to want to do something and get my proverbial arse of the proverbial settee. She recommended I up my morning and evening morphine pain killers to achieve this.
That made great sense to me and I was a little surprised that I hadn't thought about it. However I have learnt that talking to the right people does harvest new angles on what you think is an unsolvable issue.

My GP next tackled my daytime pain which I experienced walking or travelling.
Again it was not rocket science. She recommended I take the liquid morphine 20 minutes before I was to do something energetic.Regardless of if I eventually developed pain or not. This would take the edge off the pain on movement. This was exactly how it had been prescribed in the first place, however I had tended to use it when I was already in pain and not as a preventative measure. I could also use it again a few hours later if need be as long as there wasn't any side effects like drowsiness or nausea. As long as my wife and I were aware to look out for these things then we could get through the day and be able to do more things.

I now looked at taking the liquid morphine as a normal part of my day if we were going out. There was no big deal in taking it that way. Just a gentle switch in perspective on what I thought was a problem made me a lot calmer taking more drugs.

I was soon able to walk longer distances with my wife as long as I gave myself time to recover. I could still have bad days where everything hurt despite the liquid morphine. It did have a tendency to aggravate my oesophagus and unsettle my stomach so I had to be mindful of that. Its not all roses in the garden, however it does mean I can approach quality time more confidently than I did.

The boys ran the Sport Relief Mile, Emma and I had entered the event in case I felt up to it. I took some liquid morphine before we set off and soon enough the race started. The course was twice around Selby Rugby Club. We were the only 2 walking so we decided to walk 1 lap as there was a large crowd waiting to do the 6 mile run which was to start after the mile. I mentioned to the steward that we were only doing one lap and he insisted I carry on and to not worry about the bigger race. Most had finished as we started the second lap. My lads came to join us with there medals as we became the only people still walking the race. As we neared the last 100 metres, a large crowd in the Grandstand started cheering us on and applauding. It was my local club and so I think people recognised me. It was such a powerful way to complete the mile. So many well wishers urging us on. Just to make it more dramatic, it actually started hail stoning before we finished. What a fantastic afternoon that turned out to be. So many well wishers and strength of public thinking on show. Its a great club.

Sport Relief Mile mefal. A real surprise that I could finish. I was last in a photo finish with my wife.

I had mentioned requiring a Psychiatrist earlier. It was Jan, my Macmillan Physiopherapist who first mentioned that there was a team in York called Psycho Oncology set up to deal with all the issues Cancer raises with you.

I asked my GP to refer me and was soon able to see a Doctor. What is more, I could see her at Selby Hospital which was really handy for me. Its 600 yards from my house.

I can talk through all the issues and stress points cancer has raised with my Doctor. I am doing all the talking, its a good way of purging yourself of all the crap that's happened to me. Its surprising what comes out and  I am happy with the input from my Psycho Oncologist. At times I felt I was reading from the blog.

I felt I finally had all that I needed from the NHS with regards services and best advice.

Pain Management
Physiotherapy
Psycho Oncology

All sorted out this year. We could be proud of where we had got to. In November I couldn't walk and had none of the above. It goes to show that if you want something, you need to ask or you won't get. Some services haven't really been offered to us but were available almost immediately when we asked.

In late March it was time for my next scan. No dramas this time. The results were not as good as we'd hoped.. There had been no spread again which was great. My spinal tumour was the same size as January. In January it had reduced. My Doctors were positive about the results however. The tumour had stabilised. I looked and walked a lot better than I had done since before the cancer started. There were plenty of positives and I was still on the trial.

The glass was half full.