No Sooner Than Normality Returns...
Bother. Bother bother bother. Bugger. Shit. FAAAAACK.
We're back, ladies and gentlemen, more or less at square one. New growths in the lungs and a new mark on the liver. And it has come as quite a blow to Bekky and me.
Superficially, we've had a very cancer-free and therefore blissfully normal couple of months. We've been away for weekends. We've had nights out. We've seen friends. We celebrated Bekky's (very insignificant) (honest) birthday. I've been back at work full time. Normality has been all-pervading and life has been remarkably unremarkable. Superficially, at least. It's been wonderful.
All the while, however, behind the scenes the cancer has been bubbling away with a seemingly renewed vigour.
Our first indication that all might not be well came in late January when my monthly blood test showed a bit of an increase in CEA levels - from about 2 to 3.5. Anything less than 5 is considered perfectly normal so while the news was a little unsettling, we tried not to dwell on it.
A month later, we were further unsettled. The late February blood test showed not just a bit of an increase, but a solid leap from 3.5 to 6.5. Despite some calming words from my oncologist's colorectal cancer nurse specialist, alarm bells started ringing. I had some scans booked in for early March but on the back of the news, I managed to bring these forward by ten days or so. Let the stress begin!
Initial results from the MRI scan of my pelvis were positive: news came through that I was all clear in that area which came as a great boost to our frayed nerves. No new bowel tumours. Perhaps the tumour markers were just being misleading. However, the boost was short lived. The big reveal came a couple of days later at a meeting with my oncologist last Friday.
In our post-match debrief, Bekky and I both agreed that we realised all was not well the moment we entered the small NHS consultation room at The Conquest Hospital where the wonderful Dr McKinna was waiting for us. We were joined by a matron from the chemo unit which in itself did not bode well, and the atmosphere in the room was noiceably dour. We breezed through the pleasantries and straight to business.
The CT results showed a new lump in my liver. "Oh shit" Bekky and I both said in unison. But that's not the main concern. "Fuck", we both chimed in. There are a number of new nodules in the lungs and not just in the right lung, but now both lungs. How many? Not sure, but at least eight. "EIGHT?!". Our faces must have been the very definition of shock and horror. Just when we thought we were heading towards a healthy period of normality, we were witnessing it being neatly folded up and stored away, well out of reach.
We were with the oncologist for less than half an hour, during which time the next steps were discussed and the overtly complicated nature of my disease was laid bare before us. In her words, she now doesn't think we will be able to eradicate the cancer. We cannot operate on the liver immediately because surgery would postpone chemotherapy and they might not be prepared to operate if the cancer is likely to return once again. We must first attack the cancer as a whole and see if we can bring it under control.
However, the chemo I was given previously (FOLFIRI) did me no favours at all so we needed to find an alternative route. We could go back to the first type of chemo I was on (FOLFOX) but that made my hands and feet go numb and there is a risk of permanent nerve damage if we were to try it again. On top of which, my DPD deficiency means I am still only allowed 25% strength chemo which really ties one hand behind our backs in the fight against the cancer. So it was decided that, in order to ascertain whether I could tolerate any chemo, we would start on a paired down version of FOLFOX (FOLF, in effect) and see how that goes before possibly adding in the missing ingredient, Oxaliplatin. Apparently this should still have an effect on the cancer and I'd rather be alive with some nerve damage to my extremities than not alive but with perfectly healthy feet. If you get my drift.
Then there are two biological "targeted" treatments - Cetuximab and Avastin. Cetuximab is available on the NHS but 75% (75!!) of patients do not respond to it. Avastin is only available privately and some insurers do not cover it. The news was just getting better and better. The plan was to combine one or other of these two drugs with the chemo and see how we get on.
Oh, and then there is immunotherapy, the much hyped, generally amazing, relatively new form of treatment, touted by some as the breakthrough in the fight against cancer. Wonderful, brilliant immunotherapy which, owing to the genetic make-up of my cancer, will not work on me.
We had gone into the meeting very upbeat, hopeful, prepared for some bad news but not expecting much frankly. The last few weeks had been too good for anything major to have gone wrong. Once again, we stumbled out of the meeting shell-shocked, completely numb, confused, upset, disappointed and with our heads spinning.
Since then, a great deal of thinking has gone on. Bekky and I have vacillated wildly between feelings of sadness, fear, disappointment, incomprehension, numbness, disbelief and confusion. The weekend went by as something of a blur.
Early this week, however, things have started to make fractionally more sense. Without doubt, I am in a very precarious position, that much we know. But when I spoke to the oncologist today, and I said that as far as I could tell I had not, as yet, been handed a death sentence, she agreed. A glimmer of light in an otherwise alarmingly dark world.
Chemo Season 4, Episode 1 (that would be round 18 then) will take place on 20th March. I am not suitable for Cetuximab but my insurer will cover Avastin (assuming it's administered in a chemo combination of which they approve). And I'm going to get a second opinion from another oncologist. Not because I don't have absolute faith in my oncologist - I do - but because why the hell not. In our eyes, my circumstance just became yet more serious and sadly, where previously we had many treatment options still open to us, these now appear to be running low. Not out, just low. A second, previously uninvolved oncologist, looking at things from a fresh perspective might just be able to suggest something that hadn't previously been considered. We can but hope.
So I'm afraid, folks, that's all we know for now. And that's part of the problem - to an extent we are feeling our way in the dark. We now need to wait patiently to see how the next phase of treatment goes. If I tolerate the paired down chemo, there's a fairly good chance it will help. If not, there's also a chance the Avastin will keep me going for a good few years yet. But there's also a chance that this won't be the case, in which case it'll be early lights out for this particular cancer patient. Bother.
But that's not a conclusion Bekky, myself or my family is prepared to accept. We now need all the love, luck and good vibes you can spare us. Please and thank you.