So, my end of treatment CT scan was on 18 May, with results due to be presented to me on 27 May, my next scheduled call with the oncologist. There were 2 possible courses I could have taken in the intervening days: 1) dwell on the impending news, thinking of nothing else, and be consumed in stress or 2) block it out, on the basis that I can't do anything about it. For my own sanity, and for the same for those around me, I elected to take option 2. It's not easy to not not think about news that will possibly change your life, but I tried nonetheless, and made a pretty good fist of it. I got on with a work project that has been keeping me busy, tried to improve my guitar skills (skills being used in the loosest possible sense, I am an absolute beginner and am struggling), and generally enjoyed life in the sun with the dogs.
My gut feel was that it was not going to be the best news: I have developed a nasty (non-Coronavirus) cough, that made me wonder what sort of state my lungs were now in. As such, I had mentally prepared myself for the call. And was ready to hear news that might be anywhere on a scale from uplifting to horrific. I was ready to be told "sorry, we're stopping treatment, good luck and start putting your affairs in order." Having that sort of thought rattling about your head is not a great deal of fun, but, as I have tried to be over the past year and a bit, I had to be realistic about things.
Just in case any of you are wondering why there is a delay of 9 days between having a scan and getting told the outcome, it's down to the internal processing at the hospital: all such scans are presented to a multi-disciplinary team, comprising oncologists, specialist nurses, other clinical staff etc., and only once they have discussed and analysed does it get presented to the patient. The team meets once a week, on a Monday. As such, the 27th was the day.
And so, the 27th rolled around. I was sat working, awaiting the call. Another point for clarity, given the ongoing pandemic, the hospital have minimised patient visits, and in my case, I only attend on treatment days, everything else is now done by call, which is totally fine by me. The appointment was set for 10.20, but this is always fluid, so it was no surprise that it was knocking on for 11am when my phone lit up with "call incoming, private number". Batter up.
After a number of these calls, I am getting better at picking out clues as to how it is going to pan out. When I hear "positive in some areas", it is not rocket science to make the call that it's going to be negative in others. So, the results showed that the lesions in my lungs were stable compared to the pre-treatment scan in February, but not the liver was not such good news, and the various masses had increased (although one positive is that no new masses had been detected), with one benchmark mass having increased from a diameter of 33mm to 38mm.I think that mass had been down to 25mm or less previously. It has been a long time since I needed to use the formula for a volume of a sphere ( 4/3 * π * r³ in case any of you have forgotten) but it came in handy today to calculate that the masses were up to 50% bigger. Not great news. Oddly enough, after my worrying about the CEA marker in recent bloodwork, the CEA tracker had actually dropped in this week's testing. Just reinforces this is far from an exact science.
The discussion then turned to next steps. Thankfully we didn't have the Doomsday scenario conversation, rather the oncologist advised the plan was to give me a 2 week treatment break (great, we'll book a trip away somewhere nice...oh wait) and then resume with cycles of FOLFIRI (the drug protocol used in the cycles last summer) rather than FOLFOX (what I have just been pumped full of). There are 2 positives here: 1) FOLFIRI returned good results in both liver and lungs last time out (though, like the stock exchange, past performance is no indicator of future results), and 2) the side effects don't include hand neuropathy (meaning hopefully no pain when taking chilled cans of cider out of the fridge). The one downer is the return of the pre-cycle atropine shots and the stung-by-murder-hornet sensation. The plan is for 6 months of treatment, with a scan after 3, and then assess again. We did discuss longer term treatments, and there are a few options there, and also there may well be relevant drug trials at that point.
The conversation then turned gloomy (or should that be gloomier) as the oncologist had to bring up the subject of resuscitation if 1) things were to go South in a big way, 2) the hospital was dealing with an overwhelming 2nd spike of Covid-19 and 3) I needed ITU care, including access to a ventilator. To cut a long story short, I won't be getting a seat in the lifeboat. I have known this since lock-down, having read various articles on the triage processes likely to be in place if the NHS were to be put into a worst case scenario. Still, it is not great news to hear. And with that the call ended. As a summary, not the best news, but far from the worst news, and life just rolls on.
As a post script, it meant I had a lovely afternoon redrafting my Advanced Decision to Remove Treatment, and getting that executed by my lawyer, and then getting to work on my Lasting Power of Attorney. Neither document is something you ever want to think about, but both are good things to have in place to ease the burden on family and friends at a brutal point in their lives, so as a PSA, and in my best Charley voice, do the grown up thing, and get yours in place.
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