Thursday 20 February 2020

Nothing Happened

Ten years ago today, I was kindly informed by Facebook, I posted my first blog post.

It was a timely notice as I’ve been all of a dither regarding my blog lately – do people still read this kind of blog, or have we moved on to other forms of communication? Have a I lost all of my fabulous readers through inactivity? I wouldn’t blame you. Is it worth putting up with the rampant spamming which never used to get through, and shouldn’t get through, but now does? But most of all, if this Menieres lark insists on continuing (over fifteen months now, very tired of the time sap, I’ll be honest) will I ever be able to create the time to write a blog post again?

I wondered if I should knock it on the head. It’s been fun. We’ve had a good innings, me and the blog, but maybe it’s time to move on for both of us. A definite split. No animosity, no bad blood, just time to call it a day and move on to new pastures green.

But then the unexpected happened. I needed to tell people and I didn’t know how.

It was actually late December and the further it has moved into the new year, and goodness, don’t tell me we’re half way though February already, the more stressed I’ve become about getting the message out. At first I wasn’t so worried. I kind of thought people had forgotten. Not in an uncaring way you understand, but in the way all our lives move on and other concerns squeeze the older ones out, particularly if everything seems to be ok, tickety boo, not a cause for concern. I knew that should things become a concern, all you lovely people would jump to my attention. I know this because you’ve done it before.

But I’ve learnt that just because people don’t speak about these things, doesn’t mean they don’t worry. And If I’m not worried, I feel incredibly guilty if you are.

Confused? It’s complicated.

The fact is, I woke up on 19th December 2019 with a two and three quarter year old secondary cancer diagnosis. On 20th December, with no miracle, no pioneering treatment, no magic spell, I woke up without secondary cancer. Gone. No more.

Those fabulous medical people had held a Multi-disciplinary Team Meeting (MDT) and decided I didn’t have secondary cancer.

I know!

But the diagnosis wasn’t a mistake all along, a cruel quirk of fate to make me appreciate life. I already did, honest. I do, I really do!

No, indeed, if you scanned my body tomorrow not knowing any of my history, the diagnosis would be the same as it was back in March 2017. You’d still say this was a body which had one noticeable area of bone metastases in the spine, and further spots in the pelvis. Just the same.

And that’s exactly the point.

Over the thirty-three months since diagnosis, evidenced in every scan and blood test taken since then, nothing happened. Nothing changed. 

It should have done. My treatment for secondary cancer has always been conservative. Let’s not go straight back in with chemo and radiotherapy, it was decided, because it all looks very calm and stable. So let’s tweak the existing maintenance hormone therapy I’d been taking following primary cancer, and introduce a pretty side effect free (zilch side effects for me, actually 😊) bone hardening treatment, and keep monitoring the situation.

Those clever people monitored. Each follow up scan appointment was the same: no change. The areas in question were the same as in the first scan. Nothing got bigger, but crucially, nothing got smaller, either. It didn’t mean the treatment wasn’t working; it didn’t mean it was working. It meant nothing: nothing was happening.

You have a funny body (!) I was told, more than once. Does this mean I might be a good stat? I asked. If my funny body was showing no new cancer and no ‘growing’ cancer, dare I think I might be one of the incredibly lucky ones who really could live for another twenty years post diagnosis of secondary cancer?

Nobody, understandably, wanted to go there. Cancer is a fickle, devious beast that learns and re-invents itself in its quest to beat our also incredibly clever body and treatments, and, faced with this, making such bold assertions based on a hunch and unusual scans really would be foolish. It could come back to haunt us.

But I clung on to it. I liked to believe that I could be a good stat. It helped me get up in the morning and get through the day. It helped me live a ‘normal’ life, have my ups and downs, get stressed even – to me, getting stressed on a small scale is to be rejoiced. If you can fret about the small stuff, then I think it’s a sign that you haven’t got too much of the big stuff to worry about. I recognised my secondary cancer diagnosis had quickly morphed into something that didn’t bother me too much for the moment – ironically the Menieres disease had more of an impact on my everyday life – even if the niggle was always there that one day this would probably change.

I held on to the dream that if I could live for years, I might still be around for the time when secondary cancer, whilst unlikely to be curable in the near future, could be managed indefinitely. Medication which is so mind-blowingly clever it can learn faster than cancer does, and thus always stays one step ahead of the mutations, is coming. It will happen, I believe, as long as we continue to fund its development of course, but that’s another story

I allowed myself to think I had a very good chance I would be the happy beneficiary of this new kind of treatment, whilst still very mindful that oh, so many people aren’t as lucky.

But I wasn’t expecting this.

All of a sudden there was talk of MDT meetings and consensus of opinion and having got enough evidence together to categorically agree that, Mrs Buxton, this is not, in fact, secondary cancer.

Not secondary cancer.

Nothing happened: nothing changed, nothing reacted. Cancer cells would have got bigger or smaller, they wouldn’t have stayed the same for so long. Everything still evident on the scan is benign. It’s just that funny body of mine. I shall repeat: I do not have secondary cancer - because I still have to keep telling myself. In fact, despite the initial euphoria and a good few glasses of fizz, it’s taken weeks for this new state of affairs to really sink in. I still get very jumpy when I receive letters from the hospital in those tell-tale envelopes, that they will open to reveal a letter of apology: it was Jackie Buckstone, not Jackie Buxton. Secondary cancer diagnosis reinstated. As you were.

I also don’t feel unbridled joy. I feel joy, happiness and relief for me and my loved ones, lots of that. And I know I am the luckiest girl alive. Alive! But I feel great sadness, and a certain amount of guilt, for those who aren’t in my position. I wish I really could wave that magic wand.

I also wish I could have told everyone who’s been such a massive support to me, in person. I am sorry I haven’t managed that. I’ve felt so guilty about it and that’s when I thought I would use my blog again. It’s very complicated to explain and not something you can suddenly drop into the conversation if you happen to bump into someone mid chores. Without explanation, people might have thought badly of the NHS. Please don’t do that. They did everything right.

Meanwhile, I hope my story may give hope. A reversed decision is not unheard of but very unusual and it would be irresponsible of me to pretend otherwise. However, I read more and more of people living longer and better quality lives with secondary cancer and there is much excitement about the pioneering new treatments which we can already almost touch. The best us ordinary mortals can do is support cancer charities (Breast Cancer Now and Cancer Research UK are two of my favourites) wherever we can. So much of the care for people with cancer, and of the research into improved care and treatments is funded through charitable giving. The Haven, a charity very close my heart, is entirely funded through fundraising, and this is not unusual.  

I’d like to finish with an enormous, heartfelt thank you to everyone who’s carried me through my ‘funny’ body’s latest chapter of life. To all intents and purposes, I lived with the knowledge that I had secondary cancer for almost three years and I wish I’d known before the diagnosis that I would still enjoy a life of so much love and laughter. I still believe that everything else is fluff and noise. I’ll finish this blog as I finished my first post after my primary diagnosis and the first post following my secondary diagnosis: love really is what makes the world go around, or should be, anyway.

Here’s to a happy - and as healthy as possible - next chapter for all of us 😊