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The only mountain I’ll ever climb is a metaphorical one, and yet some of the terms in the climbing glossary are very appealing. My favourite is Belaying, which is the use of an anchor for a rope so that a falling climber does not fall much further than the anchor point.

In CancerWorld, the rope is time. Every so often, it feels like you slip and fall. Instead of crashing all the way to your oblivion you are left dangling from some anchor point. It’s further down, but not the bottom. I compare what I considered my ‘normal health’, say back in November 2016, and it is not the same as today. I’ve often remarked previously on how absurd if felt to be suffering from a terminal illness and yet feel and look so healthy.

Now, I feel much more tired. My appetite has declined dramatically. I look at my body and see all the vanished muscle (still covered by some flabby fat, annoyingly). I’m not sure how severe the weight loss has to be before they call it Cachexia, but it must be close.

But in January I wanted desperately to start my chemotherapy drug, Lonsurf, and I pressed on. In February, when they said my blood counts were all normal, I asked to continue with cycle #2. This week, although I was expecting bad blood reports, in fact it was normal and I have been able to go on with cycle #3.

The side effects that would have led to abandonment (diarrhoea leading to dehydration then kidney damage, mostly) did not happen. I do feel enormous fatigue on many days, and occasional nausea. There is a tendency to under-estimate an oral drug compared to i/v, as it is four tiny tablets twice a day. But the 160mg daily dose soon builds up inside your system. In a given cycle you take the drug in the first half of the month, then abstain in the second half. It is during the second half that you feel it most.

The plan is to do a CT scan at the end of March, and review the results in early April. If the tumours have reduced, it will be motivation to carry on taking the drug. If they have increased, I will stop. If they are the same (“progression has been arrested”) then it will be a mighty dilemma.

Tomorrow, it’s back to Thoracic Park for the regular cryotherapy session. And, as always, again. They’ve worked on the same two lumps at most of the sessions so far. Trying to keep them in check and stop growth. They seem willing to carry on for the long-term.

My date at Addenbrookes on Jan 3 turned out to be a bit of a damp squib. The drug hadn’t been ordered (properly) and there was nothing waiting for me. Spend a fair few hours in Clinic and Pharmacy but the short of it is that it will be ordered and delivered to me.

A day out in a large hospital is a perfect way to sample the latest infections. I chose an especially virulent chest bacteria/virus, and spent the rest of the week in bed generating generous quantities of thick phlegm. It never quite got to fever stage, so just one step short of pneumonia.

Then, another day out in Thoracic Park for  a bit of freezing and frying. I should be so used to it by now, but I do rather play these things down. It starts with a bit of throat spray and then a large injection directly into the neck. I could feel a little panic coming on so asked for more sedative. Problem solved.

An hour ago. the courier arrived with the drug. The Lonsurf Diary can commence properly now. Tomorrow is a handy date to remember (11/1) so that will be Day #1. A bit of a slow start, but hopefully not quite in the realm of “While we ponder when to begin, it becomes too late”, as warned by Marcus Fabius Quintilianus.

Lonsurf is an oral drug, as I’ve mentioned before. That doesn’t make it less intense than an IV. Eight tablets a day for 5 days, two days off, and then on again for another five days. That will be Cycle 1.

Boys and girls, I fear we need an inspirational quote to get us going in 2017. I choose this one from William James: “Pessimism leads to weakness, optimism to power.”

Stay positive.

A lot has happened since my last post. Nothing has happened since my last post. I live in a Beckettian world now. I feel like I have a lot to say, but nothing at all to report.

So, I saw Oncology on November 21. The purpose of the meeting was to review the results of a CT scan done November 15 and agree next steps avec Mon OncDoc. The waiting area was the usual gloom-ridden pit of human despair and misery. You can always tell the newcomers because they clutch the shiny blue plastic wallet they give you for your little bits and pieces. After a few weeks you have enough paper to fill many over, so it gets dumped at home. There must be a lot of sweaty palms placed on those blue wallets, and you’d like to share some experience with the clutchers. But, think about starting a conversation about your life with your fellow passengers on the London Underground. Now, double the cringe. It’s a private, silent world in the Oncology waiting area.

They were running quite late, but nothing unusual in that and I budget many hours more than it should require anyway. It was about an hour late when I got the call to one of the little rooms backstage that they use for consultations. They asked if it was OK if this nurse and that nurse sat in to listen. Fine, I muttered, but where is me consultant? Ce n’est pas Mon OncDoc. It was the same doctor I met after my infection episode. They let me out on a Saturday provided I came back on the Monday to review my blood results. I got there on the Monday, but the blood results were not back from the lab. A wasted journey for a tired body.

Now, today here she is starting our little chat with the news that the CT scan results are not back yet. I felt sorry for her. She must be the doctor in sole charge of late and missing information, the fact of which has to be communicated to the patient. I’m sure her actual job title is snappier than that, but she needs to take a hard look at the delegated jobs she is getting from Mon OncDoc. She was willing to have a go, and we could have a little hypothetical talk about might be, and what could become. I explained that, after all these tests, I could probably guess the results within a reasonable degree of accuracy. This meeting, I said, is more about the continuation of my care plan review with one who knows the history, and to obtain answers to certain questions about treatment options. So, I asked to be returned to the waiting area and recalled when Mon OncDoc was available, no matter how long that took. Not the best thing they’d heard that day, but my request was granted. Quite stressful, nevertheless.

When I finally did see Mon OncDoc, I said I was disappointed that the results were late but no matter, here is my guess at what they were likely to be. We crossed swords on some of my terminology (he didn’t agree that the tumours in my pelvic area were “rampant”, for example). But I pressed on. What I really want, I said, are answers to three questions. One, should I be more concerned about the recurrence of tumours in my pelvis rather than the secondary metastases in my lungs? (Subtext: is primary cancer location more fearsome than secondary?). He told me that the lung tumours were the priority. I’m sad to say he resorted to the war metaphor to explain why :-). Two, if in 2009 the preferred plan was surgical removal of the colorectal tumours, why not do another resection down there now? He said no-one would ever agree to that. He didn’t spell it out, but I’m pretty sure the cost/risk of surgery is out-weighed by any benefits to a patient with multiple site malignancies.

So, question three, given your answer to question two. What about this drug “Lonsurf” that I’m reading about in the Bowel cancer forums? It’s a third line treatment. I tick all the boxes. Would you consider it for me? He cogitated, but said “yes” reasonably quickly. He expressed his doubts about the drug efficacy, but thought it worth trying. Now, a “yes” means that he will submit an application. This is one of those drugs that are not cheap, and NICE needs to approve each case. I would come back on December 12 to hear the outcome.

After the drama, it was time for a quiet expedition to Thoracic Park on November 28 for another round of cryotherapy. There is an especially worrying tumour in the left bronchus that could shut down the whole left airway, and that would be the end of the rest of my left lung function. They had a good old go at that, and it was fun to watch the monitor as they ‘looped’ the tumour with what I guess is a very thin wire. Tighten the loop, and whoosh! A proper horrorshow, my droogs, with plenty of the old krovvy on show, if you pony me.

There was still time too for a trip to the Piss Factory. My colorectal specialist nurse fixed me up an appointment with her counterpart in urology. She changed all the pipes for a fresh set. I asked her to tell me the part number for the bags so that I could get my GP to prescribe. But, she went one better and phoned the medical supplies company to register me and arrange it all for home delivery. What a champion!

She wasn’t long on the phone, but what struck me was that here was a medical professional talking *about* me. Usually, we’re talking to each other. In answer to one question, she replied “He has cancer”. This is the weird thing. I sat four feet away and thought: “Do I?” It’s only been eight years for me to get used to the idea. But I was still thinking “Is that true?”

Later the same day I was at a techie event to do with Virtual Reality. I was mainly there because they followed it with a showing of the movie “Notes on Blindness” that I have been desperately trying to see. One of the talks on VR said their big problem was creating and maintaining what they call “Presence”. This is where they design the software and headsets such that your brain accepts the experience as feeling real, even if you’re know you are actually inside a game. For a moment there, in that urology consulting room, I had lost my sense of cancer presence.

But, as Nick Cave says, the tree don’t care what the little bird sings. It’s there. This not The Matrix.

So, this drug Lonsurf, what’s that all about. It’s another of those ‘double whammy’ combinations of two compounds. The first, called TFD, gets into the DNA and kills the cells. The second, called TPI, stops cell re-growth. It’s not a trial drug. It passed all the Phase 3 tests and it proved to be “fairly well tolerated” and “elicited an immune response in some patients”. It’s an oral therapy, so no hanging around for hours hooked up to a drip.  I’ll probably start on 3 cycles of 28 days each.

Why did I ask to do it? Let me borrow the answer to that from another cancer blog: “I got very depressed by the idea that I had to choose between nothing and chemotherapy”. What do I expect from it? For all these ‘wonder drugs’ that ‘cure cancer’, I get the impression there is no impact whatsoever on 80% of the people who take the drug. Of the remainder, 18-19% might get a temporary pause in disease progression, as if the cancer was figuring out this new variable. That leaves 1-2% who are the ‘super achievers’. They get the headlines.

When I say there is no impact on 80% of people, I don’t mean the side effects. There is a 100% chance that everyone will get some of those. The most likely is rapid decline in white blood cell and/or platelet count. Ulcers and skin reactions are also possible. But I’m willing to accept that.

On the subject of miracle drugs, the DeathLit Cafe had a new customer, but unfortunately he was only able to linger for a short while. The journalist AA Gill died only three weeks after dropping off his first dispatch. It was good copy. He had the “full English” of cancers, he wrote, which invited a visceral imagining of tainted kidney and liver pushed across a breakfast plate of foul malignancy. In fact, he had lung cancer that spread to his neck and pancreas. It sounds like it was a pancreatic tumour that finally did for him.

It’s a shame such a talented polemicist had such a short time to hone his experience and get down his insightful views on our very pet topic, Living With Cancer. The more so, because his fame would provide a powerful platform for any opinions that he did get time to share. His opinion was that a drug called Nivolumab would be his life-saver, if only the bad old NHS was not withholding it from him. I’m afraid this is just the optimism of a neophyte. He did in fact get access to the drug, but it made no difference.

The death list from 2016 grew a bit longer. Not a popular year, 2016. And yet, it occurred to me (too late as usual) that it would have been an awfully handy year to die. For decades to come, people could say about me: “Yes I remember the year he went. Same year as Bowie and Leonard Cohen and a bunch of other greats. Not that he was in the same league, of course, but it was the same year”. Btw I put the last bit as a nod to modesty. You don’t have to use that bit if you think it makes the paragraph too long :-).

Still, no use crying over missed hearses.