Tuesday 16 June 2020

Behind The Mask

On a sun-kissed afternoon in our garden a few weeks ago, the four of us were toasting the hubby’s Big Birthday with three other screens - thanks to that technology which the world has embraced like a lo-alcohol beer. Zoom! A necessary and viable alternative to a hug and a coffee, but not our first choice of communication in normal circumstances. There were the siblings and families dressed up, with fizz and glasses in hand and the hubby’s parents, their faces we’d not seen for over eight weeks, squeezed around their iPad screen, communicating as easily as if it were a 70s rotary telephone. And yet prior to March of this year, the only ‘zoom’ any of us would recall was in an exclamation bubble on a page in the Beano.

Obviously, I couldn’t hear what anyone was saying but nonetheless, it was a touching moment and one of the many great ones from the madness of 2020 which will stay with me. We were celebrating together. We were all a bit giddy for many reasons, not least the bizarre nature of partying Covid-style. It was a moment.

It's funny how we adapt. Indeed, I find it heart-warming and emboldening how humans seem to be able to adapt to most things, given time. It gives me confidence in times of stress that we can get through the difficulties that present themselves to us all in their many and varied ways: we’ve been here before. We can do this.

And I remain optimistic that the world will reach the other side of this pandemic, dust itself down and even retain some of the positives of the experience. That said, I realise it’s easy for me to say this. I am fortunate, my experience of Covid-19 thus far, has been so much easier than it has been for many others. I am very conscious of that.

But there is one aspect of Covid-19 life which has been particularly troubling me, and seeking updates on the wearing of masks and other face coverings, has become my new obsession.

People have different views on the effectiveness of home-made and non-surgical grade face coverings, but that’s for another day, and certainly for somebody better briefed on the matter than I am. What is clear, is that from 15 June when the wearing of face coverings on public transport became mandatory in England (recommended in the rest of the UK) covering our mouth and nose is going to be part of our ‘new normal’ routine for at least the next few months.

There are inherent difficulties in communication when we cover our faces, not least for the 1 in 6 of us who are hard of hearing. For those of us who use lipreading either with, or instead of, poor hearing, communicating with someone whose mouth is covered becomes at best a one-way street. Fabulous as my hearing aids are, they don’t work on their own. I cannot begin to communicate when I can’t also see somebody’s lips, and to a lesser extent, their whole face.

I’m minded to tell you about the time I travelled from York to London instead of Newark on a fantastically crowded train, only becoming aware it was the wrong train when I found somebody sitting in my reserved seat. Oh no they weren’t. It wasn’t an enormous hardship once I’d sorted out onward travel and alerted those waiting for me, and had the assurance that I would receive a full refund. But the situation was solely down to the fact that the platform screen hadn’t updated, coupled with Tannoy announcements being as much use to me as someone talking with a sock in their mouth, from the next village.

Lipreading-friendly masks for sale.
Lots of different patterns
More seriously, if you are faced with that type of scenario every time you leave the house, it adds another layer of stress, at the very least. Add to that the terribly depressing feeling of being none the wiser after having a humiliating conversation with a friendly fellow passenger, or member of staff, or anybody with whom you come into contact who leaves the scene thinking you are either rude, or stupid, or both, and you’ll see how situations where you run the risk of not hearing are no fun at all. Sometimes staying home seems a lot easier. And this is one of the reasons why isolation and loneliness for people with hearing difficulties is a very real threat. None more so than now.

But read on, because this is a much more positive post than it started out a few weeks ago. There are solutions to the covered mouth predicament; we just have to know they are there and be encouraged to use them.  

Those wonderful people at Action on Hearing Loss have been successful in their campaign that face coverings should not be mandatory for anybody ‘travelling with or providing assistance to someone who relies on lipreading to communicate.’ 
This is great news on an individual communication level. You can read more about the legislation here.

Then there are the wider circles. I am so happy to report that some fabulous individuals and organisations have set themselves the task of inventing an alternative mask that shows the lips and mouth. Indeed, as one sign language interpreter described: so you can see the smile.

A transparent mask isn’t perfect. It will need demisting, for example (but cloth masks get hot and sticky, too). I’m also not sure whether the sensitive issue of, how shall we call this, the potential unsavoury display of what comes out of all our mouths – let’s just leave that one there – has been solved, but it’s enormous progress in the right direction and if nothing else, a transparent covering could be worn for short periods, when communication with others was imperative. And the more we embrace the early prototypes, the more time and investment will be put into more usable, long-term versions going forward.

With the designs available, the hard part is done. Now we need to encourage everyone to commit to this kind of face covering, even those with 20/20 hearing, please! After all, the wearing of any face covering during the pandemic is about helping the other person, not ourselves. If we all buy or make masks which show the mouth where remotely possible, this potential crisis for lipreaders will be largely averted.

Instructions are in sign language.
A bit more technical, but worth a look
You know, these transparent masks take a bit of getting used to. But then, the traditional cloth masks and scarves generally look a little odd to me at the moment. I can’t help thinking that once we get used to a partially transparent mask, that we might all prefer to see people’s mouths and more of their faces and the ‘music and the dance’ that shows the real meaning when we speak.

After all, if we can embrace birthday celebrations crowded around small screens with three generations hundreds of miles apart, I am pretty confident we can adapt to transparent face coverings.

Thanks for visiting the blog. Do let me know of any face covering creations or stellar purchases. Happy face coverings to you all😊

Click on the captions in the selection of pictures in this post for links to just a few of the to-purchase, home-made and more technical options already out there.

Update! Due to a fabulous response to the post - so much enthusiasm for transparent masks, thanks so much! - I've been looking for other places to buy transparent masks, and found loads at Etsy 

Don't forget Just Smile, the fabulous wife and husband team who make all their masks (currently - they've been inundated!) and as mentioned above. 

An enormous thank you to the very kind people who have listened to my fears and sent various articles and links. I, we, appreciate you, appreciating our plight!


Sunday 7 June 2020

Covid Stories

One of my students said that she was struggling to make any progress with her novel as it was set in the current day and everything had changed. I felt for her. My current story is set (slightly) in the past, so this wasn’t something I’d given much thought to, previously.

When you consider it, even describing a contemporary scene as ‘every day’ as walking down the street would bear no resemblance in a balmy summer scene of 2020 to one you may have written, or read, last year. The wearing of face coverings on public transport will be either mandatory or encouraged across the UK in a few days’ time and I see no reason why people will remove their masks before proceeding on foot to their destination. Once walking, whether people opt for the two metre dance, bouncing like leprechauns from pavement to kerb and even into the road to keep their distance from potential contamination, or the head down swagger of those confident that it would take more than a chance brush with a Covid-19 carrying stranger to become infected by it - and all those in between - it’s safe to say that moving from one place to another is going to look very different in this third decade of the new millennium. And for the foreseeable future at least.  

Add to that the lack of any physical contact - even some eye contact seems to have been tarnished with the brush of extreme caution - silent restaurants, well-spaced queues with no sniff of any barging, boarded up businesses that even furloughing couldn’t save and cinemas still advertising pre-Easter films, and it’s fair to say that without addressing the post-Covid-19 setting, the story could look oddly dated, even bizarre.

I was musing this when I came across a brilliant article in the Guardian where different authors give their views on how to deal with the Covid-19 In Fiction dilemma. They talk more of the plot itself and the challenges, for example, of the consequences of love at first sight, indeed a quickie down the side street, with masks and two metre distances in place. Hmmm. 

It’s a thought-provoking article and I certainly don’t have the answers.

But I do know I’m not ready, or willing, to jump into a covered faces, worried street of Covid-19 affected stories for my late-night reads. I tend to read fiction and although I do opt for gritty reality over fantasy, I also want to spend time in another world. In short, I won’t be opting to read a novel set in a pandemic any time soon, and the film of that name as far as I’m concerned, can safely be stored away until any grandchildren ask us what it was really like.

Does this mean that everything I read from here on in will need to be set in the past, or will writers decide their story can manage without this nod to reality? I mean, how interesting is a snapshot of a street full of people adhering to the rules? I don’t think there’s an awful lot you can do with a picture of people in masks, once it’s been duly noted for continuity purposes. It feels a bit like pointing out that the people walking down the road have skin on their faces, or need to open their mouths to eat. And yet not to embrace our current climate, would seem out of sorts, too - a whopping great elephant in the room.

Dear readers, writers, this question has me flummoxed!

How much reference to Covid-19 would you want, how much would you need, to be included in a story that took place post spring 2020? Is this something you’re currently addressing or even reading right now? Perhaps the wearing of masks and keeping of good social distance is already adding to the plot you’re writing or the story you’re reading. I’m really interested in your take on this. 

Please do share your thoughts!

Meanwhile, I hope this post reaches you all safe and well and managing to navigate the madness and sadness of the Covid-19 world.  

*Footnote! Interestingly, when I did my spellcheck, it didn’t recognise ‘Covid-19’ – I wonder how long it will take to get with the 2020 programme…?

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 😊