My wife nudged me last night and reminded me I had not updated this blog for some time. To be honest, I thought it was a couple of weeks tops, I was surprised to see this morning it was almost 3. Still, for those readers who have stuck with this ongoing word salad for 18 months, the good news is I am not dead yet.
Cycle 6 began, as always, with a trip to the doctors' surgery to give blood, and then the pre-assessment call the day before treatment. On the call, the oncologist noted that generally all blood markers were looking OK (and yes, there was a huge BUT in this case), but I was still showing a tad anaemic. The "but" was the pesky CEA marker. For the second cycle in a row, the marker had risen again, back to the heady heights last recorded in spring/summer. As had been previously discussed on these calls, the absolute number returned is less important than the direction of change. In simple terms, down = good, up = bad. So this was bad. The caveat is that my CEA marker seems to jump around like a lunatic rabbit, and so the only true test of the state of things would the next CT scan.
The next scan is going to be pivotal. Whilst the oncologist plans to chuck me into another cycle of 6 treatments right after this 6th one of the current set, this is contingent on a good, or at least stable, result from the scan. If the results are adverse, and there is progression of the disease, then the conclusion is that the current drug cocktail is ineffective, and an alternate course of action needs to be taken. To describe this outcome as a bummer is to rather understate the significance. The current cocktail (FOLFIRI) is the same one as I started on last year, that did show good results. The next treatment line would be LONSURF (I have not yet investigated that one), and if that fails, things after that start getting a bit darker, since I am then into the realms of drug trials and the like. Presently there are no trials ongoing at the hospital I am being treated at, but my oncologist trained at, and retains contacts with, the Royal Marsden in London, which is one of the leading cancer centres in the world, let alone the UK. I know various friends who have been treated there, and the unanimous view is they are excellent. The key is that multiple trials are ongoing at the Marsden at all times, so the hope is that I would be eligible for one or more. Clearly there are logistical issues attending appointments 100+ miles away, but I am blessed with a support network that includes various places to stay in and around the capital.
So, after that rather gloomy conversation with the oncologist I was signed off for another stint in the saddle in the day unit, and the following day I was back there. A consistent theme of my treatment visits is the interest various nurses take in my chemoport. It is not a common sight within the NHS, due more to cost grounds than practicality, and it remains a source of amusement to me when the nurses almost fight over being assigned to me and thus get a chance to tinker with my port. This time I got a nurse who was pretty much the departmental authority on all things port-ish, and resulted in a very interesting conversation of her times in Bermuda and the Middle East as part of a team dealing with paediatric cancer patients. Also, as an aside, we got talking about diving, and it turned out her partner owns the local SCUBA training centre.
So, with another treatment completed I headed home. As with the previous 2 cycles, nausea kicked in almost right away, and I faced the joys of puking on an empty stomach. That never gets old. I crashed out for the rest of the afternoon, and then gambled I would be able to keep my tea down. It should not be taken as evidence of my MIL being a bad cook (she is far from it), but after a few mouthfuls of my meal I was legging it to the bathroom. It gets to an extreme case when you are trying to keep down the anti-sickness medication. But, as noted before, if this is the new normal, then I have to accept it, since the alternative is unacceptable.
Thankfully, in line with last few cycles, by the next day the nausea had passed, and I could get on with life. We had one of our nieces visiting for a few days, so had a number of lovely walks with the dogs, and generally enjoying life. I had been allocated a disconnection slot on the Saturday not the Monday (constant bane of my life), so was able to get unhooked and try and enjoy the weekend as best I could. Bristol City even managed to win a game of football, so things were looking up.
The "off" treatment week passed with little incident. I was busy at work, and was generally feeling OK. I had been prescribed some sleeping pills to combat the effects of the steroids, and used those a couple of nights, with generally positive results. And so, it came back around to this week, a treatment week. As sure as night follows day, bloods were taken at the start of the week, and today I had the pre-assessment call. It was generally good news (without even a BUT attached): the blood markers were all looking good, my haemoglobin levels have shot up, taking away the anaemia, and best of all, the steady rise of my CEA count has been stopped, with a fractional decline this time. Now, I have not dug out the bunting and planned a street party based on this, since I have been bitten before, but you have to embrace the non-shitty news when you can, however small. Treatment was greenlit for tomorrow, but more importantly, a CT scan has been booked for the following day. We should get the results of that scan 2 weeks from today, on the next pre-assessment call, and that conversation will be a major point in this whole journey.