• Rich

"Blissful" Ignorance

I am aware it's been well over a couple of months since I last updated you, but I'm pleased to say that there has been a genuine and, dare I say it, moderately enjoyable case of "No News Is Good News" going on.

My last scan was in late January, an absolute aeon ago in cancer scanning terms, when it was revealed that the cancer within me had become fairly substantially worse - more growths in the lungs, enlarged lymph glands and dodgy-looking things in my liver. Ironically the only thing in the clear appeared to be my bowel.

At the time, Bekky and I fell into a bit of a dark hole - things suddenly appeared to be rather final - and the situation was compounded by my frailty (having not been able to eat for several weeks), and a disastrous post-surgical re-introduction to chemotherapy which scared the very be-Jesus out of us both.

Since then, however, and without wishing to sugar-coat, things have been...OK. Challenging, tiring, repetitive, occasionally arduous but mostly...OK.

For starters, there have been no more scans, hence the title of this post. On the surface, this may appear to be burying our heads in the sand, but I have been in close touch with my oncologist over the last few months, and it was decided a while ago that we wanted to get a good few rounds of chemo under the belt before seeing what effect it was having.

Now, having had 13 more rounds since March, the time approaches for a scan a bit later this month, but in the interim Bekky and I both feel that we have been able to enjoy a few weeks of near normality in a state of blissful ignorance.

I use the word blissful loosely, of course - having chemo every fortnight could never really be described as "blissful" - but my regime takes a fairly precise form of one week off, one week on. Almost exactly a week post-treatment, I begin to feel sufficiently human to make a return to normal life and that week of normal life is as close to blissful as we are currently likely to get!

Life is still hard, though, even during the so-called "good" weeks - I still feel as though I have gallons of poison sloshing about in my body, and I am fundamentally very weak because when I am just about on sufficient form to undertake a little light exercise, boom, it's chemo-time again. It's very frustrating.

There have been brighter moments though - a visit from cousins from Canada, a long overdue visit to my big bro and his wonderful family in Oxford, some car-based antics, regular Sunday morning breakfasts-in-bed, a little wedding anniversary, an awesome night at a local hotel with dear friends, two photoshoots (one for Bowel Cancer UK/The Sun and one for the Daily Mail), a 41st birthday, a couple of nights with my beloved wife in an amazing hotel in Suffolk, a fantastic party just up the hill from us, and a few days spent at a little gathering on a farm near the town of Glastonbury in late June.

But the scan looms large on the horizon and the outcome of scans is rarely good news these days. We had a meeting with my oncologist ten days ago and we discussed possible next steps, assuming the scan fails to show some sort of miraculous recovery. And the good news is that there are still options available to me.

I follow a number of fellow bowel cancer patients on Twitter, all of whom are in differing places as far as their prospects are concerned. Some, sadly, are down to their last treatment options but pushing on regardless; others have just been told they are in remission, and there's everything in between.

Patrick Wymer (https://twitter.com/bowelcancerman) is the former - he manages to maintain a wonderful, honest, humorous and insightful view of life despite knowing that his options are dwindling. It's obviously not a desperately happy place to be peering into, but it is very real, all the more so to me as it's where I see myself at some stage in the not too distant future. At the other end of the spectrum, there are those who are celebrating the fact that they have been given the all clear and are now officially in remission. A happy, wonderful place to be that deserves all the celebration it can get.

Unfortunately, on that front, I've also seen the number of people who find themselves in remission, only to have the carpet whipped out from beneath their feet all too quickly when the cancer makes an unwanted return. The Sun's Deborah James (https://twitter.com/bowelbabe) was one of these. Her remission celebrations were so short lived they barely existed at all, as she spells out here.

So to me, the word "remission" results in a serious degree of cynicism when I hear the good news. It kind of happened to me - I've had the privilege of "ringing the chemo bell" to signal the end of treatment (way back in 2017), only to find myself back in the chemo chair less than three months later - so I suppose a degree of cynicism is inevitable. Despite that, I sincerely hope and wish that those who find themselves in remission from this stinking, fetid disease bloody well stay there.

Anyway, I digress. Back to my options - first we (we being me, the onc and some clever medical bods) are going to obtain a complete picture of my genetic makeup, something we haven't managed to do yet. Having all the details will allow us to know if there are any trials, treatments or other clever things for which I may be suitable quickly, as and when they become available.

Then there is a possible return to a type of chemo I have had before - either FOLFIRI or may be Raltitrexed and Irinotecan (I can't remember which, to be honest, although Bekky is fairly sure it's the latter). Both worked quite well, but they also exacerbated my existing significant bum problems. Now that my bum is more or less normal again, the hope is that it will tolerate the treatment. There was also mention of Herceptin, a chemotherapy usually used for breast, oesophageal and stomach cancer but which, the onc tells us, can also work for bowel cancer. So, like I said, options remain. But as ever, we'll just have to wait and see what happens on that front.

The bad news is that, at the last glance, my CEA levels were up, despite fortnightly chemo for four months. This is possibly because the current regime is no longer effective, but CEA levels are very much indicative and not diagnostic, and can be influenced by all sorts of things including infection and even chemo itself so we're not paying it too much attention. It just prepares us a bit more for the fact that the scan results may not be quite what we are hoping for.

The good news is that the new regime of chemo will most likely be three weekly instead of fortnightly - it probably takes longer to get over but not having to go back to hospital every two weeks would be rather wonderful, and might allow Bekky and I to lead a fractionally more normal life without the need to squeeze every two weeks into one.

The scan is in just over a week, the results probably a week thereafter and then all will be revealed. Not a moment we are looking forward to, but given we've had five and a bit months of blissful ignorance, it's probably about time we faced reality.


#tumourmarkers #CEAlevels #scan #CTScan #remission #herceptin #raltitrexed #Tomudex #FOLFIRI #blissfulignorance #chemo #chemotherapy

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