Around half of those diagnosed with stage 4 bowel cancer end up dead within a year. But you can take today’s blog as proof that I’m not – isn’t that wonderful! And it gets better because, in the words of my oncologist, I’m responding ‘spectacularly’ well to chemotherapy to the point that two sites of cancer have melted away to leave one more on my liver that may well be burnt off with needles – I’ll find out if this is going ahead after a meeting on Wednesday.
Everyone who I’ve told about all this is, quite naturally, delighted on my behalf. It’s been wonderful to share the good news and it feels like I’m making some kind of amends for the procession of bleak updates that have spoiled the day of friends and broken the hearts of my family. Having seen faces crumble into shock, disbelief and floods of tears right in front of me, I’m now revelling in seeing beaming smiles spontaneously appear.
With an election coming up, it was to be expected that the Labour Party would be in touch and continue to take an interest in my story – indeed, I’ll be featured briefly in tonight’s party political broadcast (6:25 ITV, 6:55 BBC). A few twitter trolls/robots have suggested that my sob story is being exploited for political gain and that I’m being shamelessly used. Please let me unequivocally state for the record that this isn’t the case. This is evidenced by the fact that – well I volunteered! I genuinely believe that putting my support and ‘powerful’ story of altruistic hope behind (what I consider to be) the government in waiting will lead to real change. For example, with quicker appointments and scans, we’re talking about the kind of change that could see people in my position catch cancer early enough to look forward to better prospects. Change that could see private schools taxed fairly to fund teachers, therapists and breakfast clubs in the state sector, where these resources are desperately needed.
On the face of it, my association with Labour is quite transactional: I share a story that they amplify and the arrangement is mutually beneficial. But I wasn’t prepared for the reaction I received when I sent my recent PET scan results video with my Labour contacts. Not for the first time, I appear to have moved a load of people to tears, but these were tears of joy and hope, with promises that everyone was with me. One staffer, who’s busy standing for election, took the time to call and express how great it was to hear that things were looking up. Even Shadow Health Secretary Wes Streeting, who I’ve met just a handful of times, declared how happy he is for me. Wes, who has done his time on the cancer wards, has stated publicly that he feels a kind of survivor’s guilt when he meets people in my situation as he has a very low chance of recurrence. So it’s not surprising that Wes told me he wasn’t emotionally ready to hear my news.
He’s not the only one. Over the past couple of months, I’ve been repeatedly told that chemotherapy was working very well. That in itself is brilliant, and not, by any means, to be taken for granted. But it’s been something else to hear that I no longer have neck or lung cancer. Maybe a year ago, an advert for Macmillan was doing the rounds where someone is told the same and struggles to take in the best of scan images. This is essentially what happened to me – the only difference being that I forgot to bring a film crew to my last appointment and didn’t even get the whole scan into my picture of the doctor’s computer screen. A couple of weeks later, when the PET confirmed that these cancers were definitely gone, this was enough for it to really sink in and my emotional reaction at the time has now been widely shared.
You’d think I’d be ecstatic and deliriously happy – three down, one to go! After all, if this next procedure goes ahead, I could be cancer free. Imagine that! This is something I’ve dreamed about and idealised ringing that bell to the point I’ve written a song about it. Until very recently, that prospect was completely closed to me – for others more fortunate than me. I don’t really mind it existing (as some do) but I’ve felt a pang of emotion every time I’ve walked past that bell in hospital – believing I’d never ‘deserve’ to touch it. Well now that bell is far more tangible – just out of reach, but not necessarily forever so. You could make a feature film about me and that bell – an extended metaphor for chasing the impossible dream, and despite impossible odds, emerging victorious.
But unfortunately, my story is set in cancer riddled reality, not Hollywood. And here’s the kicker: the house always wins. Believe me – with every tentative piece of positive news, I’ve asked. Again and again. But no. Make no mistake, cancer will kill me. I may last years. I even hear about the very occasional hardy soul who makes it a decade or more. But this is stage 4 metastatic bowel cancer and it always comes back. This is why I can’t bring myself to be as happy as everyone else. Because even the very best news is tainted by the reality of my situation. Cancer free – so what? It would be a nice thing to say, but it’s essentially meaningless because even if there is ‘no evidence of disease’ it’s still there at the molecular level regrouping and finding the next major organ to cling to.
It’s enough for any instance of positive news to emotionally perplex me. This will sound crazy but I sometimes long to be given a definite number of months left to live. The uncertainty is just so hard and with every reset of the ticking clock, I’m again left wondering how to live out whatever time I have left. The big decisions are again even more up in the air from financial security to how I can do good now, to the legacy I’ll leave behind.
I really do wish I could take the positives at face value and settle into the healthy summer that I longed for over the past winter of misery. But every smile of delight will inevitably be countered by the fresh letdown that I’ll have to deliver sooner or later. Sure – I’ll do my best to live well in the meantime, but the better things get, the greater the futile hope and it’s hard enough right now to manage people’s expectations when I say that chemo is working, let alone break those hearts all over again.
Cancer has provided me with one peculiar gift. People have told me in no uncertain terms how much they care about me. I’ve received the eulogies and epitaphs that are normally reserved for people who are long since dead. It’s overwhelmingly touching and meaningful to hear these words from friends, family and complete strangers. But at the same time, these words weigh heavy on me. Because the more people care, the more it hurts to know that they’ll share in the tragedy of what lies ahead. It’s enough to consider keeping the good news to myself. The higher I rise, the further I’ll fall and I’m just so painfully aware that it’s not just me who’ll feel the impact.
So, I’m not happy, delighted or overjoyed.
Oh how I wish it were that simple!
1 Comment
We are utterly delighted. Hope op is success. Will keep reading blog.