This is a strange period to write about. It's a kind of no man's land punctuated by one very strange procedure, patches of broken sleep, lots of pacing and enough painkillers to get Motley Crüe through an entire North American tour.
For the first few days District Nurses visited to hook me up to IV antibiotics. For those whiners who say the NHS is underfunded, let me tell you this- I had to find a coat hanger to hang from my curtain rods so they could hook up a drip. So I guess you're right. But I enjoyed the Heath Robinson nature of it all.
After the final day of antibiotics it was time to meet my specialist surgeon in Basingstoke. The thought of being able to petition these guys to operate on me was my primary motivator for the last few months of chemotherapy. Chemo would, at best, keep my disease at bay, it was a finger in a dam that could have burst at any time. I had no idea what I'd do if they refused to operate, and had tried very hard to push that option out of my mind - it could do me no good to think that way. I knew Kerry was incredibly concerned about what it would do to my mental state if they refused to operate.
Dirty lying SatNavs claim that it takes about 90 minutes to get to Basingstoke from our house - but the law of the universe is that if one of your symptoms is an irresistible urge to shit yourself it will take at least 2 hours. My appetite was waning too so when we did arrive, cross-legged and sweating, at a service station, all I could force down was a chocolate brownie. Which, interestingly enough, was what I pretty much forced out in the toilets too.
We made it to the clinic in good time and It was a good chance for me to play my favourite game which I'd honed over 6 months - it's called 'what the hell is wrong with them'. Unfortunately, considering the kind of clinics I frequented, it could get a bit boring. You know - cancer, cancer, cancer, broken leg, cancer, cancer, probably the clap by the looks of them, you get the idea. They also had lovely toilets, so I took the chance to defile them twice before my appointment and also necked some paracetamol.
Then it was time to meet the man who could slay Clarkson, along with the clinics Specialist Colorectal Nurse. We warmed to him immediately. In fact, Kerry has a strange professional crush on him because of how well he communicates with his patients. To be honest, if I had to choose a medic to be the one to tell me they were going to remove half my insides, I'd choose him every time. He listened to my history attentively and told us he'd carefully gone through my scans. He felt my tummy. Then he stated, quite matter of factly, that the team were almost certain it was appendix cancer. Everything made sense. The source of my pain, the fact that nothing showed up on any of my scopes, my gradual weight gain over the last few years. 'Pan Colitis' my arse. I liked this fella.
Then he said the thing that made me realise I'd been holding my breath most of the day. Because I was inexplicably still upright and active, and based on my response to Chemotherapy, they were willing to operate. I'd have to wait at least 6 weeks from my last round of Chemo (the chemicals can seriously impact the ability of the body to heal) but then they'd be good to go. He then explained the surgery, but made it clear it was slightly different for every patient. There was some things that were pretty certain, though. Obviously the tumour would be removed, but they'd do much more. The Omentum would be removed (the 'duvet' hanging in front of the stomach). The Peritoneum (the fine organ delicately lining the abdomen) would be stripped like wallpaper and then, whilst my abdomen is open on the operating table, they would pass superheated Chemotherapy chemicals through my abdomen, at a temperature that would kill me if administered through my veins. It would be like steam cleaning my guts on the inside. Some organs may be operated on too, most notably the spleen, so I'd need injections to protect me from illness in the absence of my spleen. The operation should last around 8 hours and I'd have a few weeks in hospital to recover. Crucially, with my condition, this surgery was the only option that offered more than a handful of patients a 10 year plus survival rate. I think you're meant to go away to consider things and discuss with your partner whether you want to go ahead with such a major procedure. Kerry and I glanced at each other. There was no need for debate. 'When do we start?' I asked....
We set the date there and then. Because of the size of the procedure and the necessary 6 week wait they only performed 1-2 a week. The next slot was January 20th. My goal was set. The marathon began.
As the days and weeks wore on my condition worsened, there were no drugs fighting off the inexorable march of my disease. My pain increased and I became more and more housebound. I was exhausted and in constant, grinding pain around my right pelvis, the small of my back and my groin. The pain was strong enough that I couldn't sit still, I'd pace the house for hours on end trying to walk off the pain. I couldn't sleep for the pain, but the thing about pain is it's debilitating - sleep was a distant friend I so desperately needed. I'd taken so much Tramadol to deal with the pain that it no longer even put a dent in the agony the tumour was causing. The only thing that helped was taking Paracetamol like clockwork. For the entire 7 weeks or so I religiously took 2 Paracetamol every 4 hours, 24/7. It would take 45 minutes to kick in, last until the 3 hour mark and then the grinding pain would hit again.
People suggested trying Morphine. There are limits to how much you could take in a 24 hour period and the suggested 10ml at a time did nothing. In desperation I'd swig a good 30ml from the bottle right before bed and hope I could sleep. That normally bought me 4 hours before the pain woke me up. I'd then pace the house in darkness at 3am until the next round of drugs. My discomfort and wriggling meant Kerry had to decamp to our spare bedroom to get a decent amount of sleep. I missed having her beside me, but this disease hurt her as much as me, she had to watch her husband deteriorate and pick up my slack. She had to keep the household running, look after Ethan and me, and hold down a job. She rose to the challenge. It's bullshit when people call me an inspiration. I'm a coward afraid to die. My wonderful wife inspires and motivates me every day.
This was my life for those months. Ruled by the next dose of drugs and ripped apart by pain that drove me to distraction and sometimes tears. I'd take naps twice a day in painless periods and be a pacing zombie, wincing and moaning, the rest of the time. Drugs, pain, pace, sleep, repeat. Drugs, pain, pace, sleep, repeat. Drugs, pain, pace, sleep, repeat. My diarrhoea got worse and my appetite waned. I found there was less and less food I could digest until I existed on stews and beans on toast. This thing was killing me. I couldn't really go out with Kerry and Ethan and Christmas was me gingerly eating bits and pieces of food and falling asleep at my families houses. I started to worry I couldn't make it.
Time moved slowly and 2013 became 2014. The pain got worse and my sleeping patterns even more erratic. My discomfort was driving me to tears. There was one last procedure to face before surgery and that was the insertion of an IVC filter. Hurrah, another procedure I hadn't heard of! As none of these things (especially my crazy HIPEC surgery) were covered under the NHS (well, I could go on a long waiting list and keel over in the meantime), I called my health insurance company to authorise both procedures. 'Oh, your covered ended December 31st 2013'. That noise was my sphincter tightening so hard and so quick it could have turned a lump of coal into a diamond. After several frantic hours of harassing the HR team at work, getting the details of the new company (phew!), explaining my complex history several times and peeling Kerry off the curtains, I got my insurance cover agreed.
So in early January we headed off to the private wing if North Hampshire hospital to have a filter inserted. Because of my history of clotting a filter was necessary. I already had nightly injections of Clexane to keep my blood thinned (I believe without them the blood would solidify in my body overnight. Or something) but to cope with my surgery a tiny thing looking like an egg whisk would have to be inserted into a major vein just outside my heart, y'know, to catch blood clots. As you do.
As an extra nipple cripple to supplement the beating I'd taken for the last 9 months, we discovered on arrival that my new insurance company had got the wrong end of the stick regarding my cover and I wasn't insured for my stay. So while Kerry frantically tried to co-ordinate cover I got to explain my story to three different people who couldn't understand why I was there. Oh, and have the pleasure of 15 different attempts at taking my blood, including one aborted attempt on my foot. Brill-o.
Because my procedure was due at 11am we had an early start, with me nil by mouth (including painkillers) since the day before. This was OK until they decided that because I was from outside of the county it was like a Martian visiting and I'd have to be last on the list (3pm) lest my filthy foreign blood contaminate the theatre. Thanks a bunch. The shit show then continued when no-one could actually work out where the newly built private patient wing was so I then spent 45 minutes hunting down said wing, hungry, thirsty, full of needle pricks and hobbling with pain. By the time I got to the snazzy private wing I half expected my consultant to turn up with a bright red nose and a plastic flower that squirted water from his lapel.
Eventually I was taken down to theatre ready for 3pm. 45 minutes later I shuffled down to the X-Ray room trembling in pain and suspecting that I was more than likely going to shit myself very soon. The procedure was similar to my PICC line going in. With an X-Ray hovering over me a Radiologist would use it to guide the flattened whisk into a juicy vein, and when satisfied it's close enough to my heart, open it up. There it would stay for the rest of time, hooked into my vein, catching crud. For reasons of, I assume, perversion, they insert it via the groin. Which meant a very nice lady shaved my goolies with a sheep shearer. Lucky me, part 88.
I was obviously anaesthetised so other than my trembling bum hole it was a very easy thing to go through. But other than the intense need to defecate I was beginning to seriously suffer with the lack of painkillers. It was over a year since I'd gone that long without any drugs and I was suffering. Then they told me I had to stay lying down for an hour. After an aborted and embarrassing attempt at using a bedpan something well and truly snapped and I'm ashamed to admit it but I lost it completely for about thirty minutes. Poor Kerry had to witness it and to this day I don't know what caused it but the threads holding my sanity together gave up. I burst into tears and began screaming that I was going to die. I shook uncontrollably and nothing Kerry said would help. I just kept repeating that I wasn't going to make it and I'd failed. Control eventually came back and I'm glad to say I haven't had to put Kerry through that again, but I'd well and truly had enough.
And Lo, I had yet another night in hospital. The only benefit was that I could then follow up my stay with my final checks at the clinic down the road the next day. I had my standard blood tests and was given a tour of the ward. The colorectal nurse hooked me up via lots of sticky pads to a heart monitor. All was good. Then she talked me through the operation - it was a bit of a blur but I'd read up everything I could online already. She also talked me through the prospect of having a stoma - 40% of their patients end up with a stoma because of the amount of bowel that had to be removed. What's a stoma? Essentially a bag you poo into. I made light of it - chuckling about how much money I'd save on loo roll and how nice it would be not having to run around trying to urgently find a toilet out and about. What a douchebag. What a smart-arsed dick. What a smug bastard I was. You'll see why soon.
And then, that was it. I headed home with just under 2 weeks left. The home straight. But unbelievably the pain intensified. I grew more and more tired and had to pace more frequently. I no longer knew what to do with myself. This thing was killing me, literally. I had to make it.
Then, with less than a week to go, Ethan was hospitalised. It was only an infection but it was a serious one. If I caught it, the operation was off. Dr. Kerry stepped in and Kerry quarantined me from her and Ethan. I was home alone with my thoughts and my pain. I cried a lot. I thought I might never see Ethan again. I could die on the operating table. I cried because I missed my family. I cried because of the pain. To ease the pain I was taking 4 baths a day. Nothing got rid of it - I'd pace the empty house in the middle of the night for hours on end. It was unbearable.
My little buddy was discharged and was incredibly brave, and finally they both came home less than 24 hours before I was due to go into clinic. I'd made it. I was hours away from what those who have been through it called 'The Mother of All Surgeries'. The time had come.....
Coming Soon - Chapter 15 - Clarkson's Last Day.
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