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 all๐Ÿ˜Š


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 ๐Ÿ˜Š) 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 ๐Ÿ˜Š

Sunday, 1 September 2019

Running, Writing, Sleeping and Retreating

It starts today! No emailing, no social media, no screens (unless it’s *directly* related to that small matter of the full manuscript of my second novel going to its first Beta readers in eight tiny days’ time – that’s ok, right?!?) after 8pm and for the entire month of September.

I keep thinking this is a bad month for me to be switching off. I have a gaggle of birthdays, not least several ending in '0', a wedding, a hen night, a Great North Run, our very own Welly Wanging event (more to come on that one) and the nest emptying again after a quite precious three months of having a noisy house once more.  

But I also have a heap of preparation to do to get ready for teaching again in October, including my exciting new venture into writing retreatsediting contracts, the inevitable stack of revisions to be made to that book following its first read outside of my study walls (did I mention it’s going to my fabulous readers in eight tiny days’ time…?) not to mention the other to-do’s of the loosely called ‘Day Job’. 

If I’m going to be able to participate as fully as I hope in the above antics, and still go to bed the same day I got up, then I have to commit to the big Switch Off for Scroll Free September; September is exactly the right month to be Scroll Free, Screen Free after dark.

So I should probably put it out there now, that if you see me hanging around on social media after dusk, you have every right to ignore me, indeed you must.

And it’s not too late to join me, click here to find out more!

One last thing before I set my Do Not Disturb on my phone for 8pm (It’s already set for 10pm except, ahem, I override it oh, probably every other night) if you have emerged from the summer with any spare pennies lying around, could I ask you to consider the Haven as a fabulously necessary but non-government funded charity to take them off your hands? 
My daughter, not what you’d call the biggest fan of running, and I are embarking on the Great North Run on Sunday 8th and this link should explain why this is quite a big deal for me these days, for both physical and emotional reasons.

On a lighter note, I’m excited about introducing my daughter to the happy sounds and atmosphere of the wonderful supporters who line every step of the Great North Run route, not least the top quality buskers, the stirring steel bands and the home owners who buy in shed loads of oranges to hand out to needy runners as they trudge past because, well, just because they want to support the endeavour. There’s so much anger and disappointment in the country at the moment and events like these just remind me that beyond the rubbish of everyday trials and stresses, I fervently believe that human beings are really excruciatingly nice.

If you are able to sponsor me, please click here for the fundraising page for the Haven cancer charity.

Meanwhile, have a fabulous September and do let me know if you’re Scroll Free, too. 

We can be together in spirit, albeit not online.


Tuesday, 20 August 2019

Switching Off September


So here’s the plan I mentioned here. I can’t guarantee it will add years to our lives, but then, I can’t say it won’t, either.
What if we all decided to switch off our technology at the same time? What if we all had a pact: a realistic deadline where we stopped sending emails etc.at say, 8pm? And to make it easier, we stopped looking at them at 8pm, too. The whole correspondence shebang could start again next morning, of course. We could continue using travel time to answer and send emails perhaps, but with the frisson of excitement that after say, 12 hours of frenzied activity on the networks, it would all then stop. Freeze.
Ok, I realise in this global economy that one woman’s 8pm is another man’s breakfast but we have to start somewhere, huh?
I know it’s only a dream. Some people wouldn’t like it, and it wouldn’t work if everybody didn’t sign up, I suppose. But perhaps if there was a significant groundswell, those who didn’t like the idea might, nonetheless, be open to the concept and accepting of the fact that fewer emails would be landing at night. Hey, they might even start to enjoy it, too.

Enter: Scroll Free September!
#ScrollFreeSeptember, the brainchild of the Royal Society for Public Health (RSPH) is about to enter its second year of encouraging people to take a month off social media, or rather, to do less of it. 
The key is to sign up to the option that is most relevant to you, and then sit back and enjoy a time rich September, musing how much calmer life would be if we could keep up this healthier relationship with our phones going forward. I’ve signed up to Night Owl, no surprise there, but have added in my own, ‘Correspondence Curfew’. In short, my Scroll Free September commitment is: Scroll and Email Free Evenings, and I can't wait.   
Day light hours? I’m going to reply to all correspondence as quickly as possible whilst employing a monumental effort not to begin my missive with being sorry for the delay. I shall respond with friendliness and professionalism but I will not, I repeat, not apologise. You see, by apologising, we’re implying we’ve done something wrong. But looking after our health, and not putting (albeit unintentional) burden on other people’s health, is a good thing and should be rejoiced. What I’m hoping is that people will lower their expectations of me.  And in turn, I will lower my expectations of them.
We’ll still love each other.
In fact, maybe we’ll love each other just a tiny bit more now we’re liberated of brain fog and showered in sleep. Will you join me? Will you endeavour to be less responsive, to keep people waiting and smile while you do it? Will you vow not to apologise for a tardy response to communication?  
Oh, this is the most rebellious I've been for a long time.
Perhaps you’re streets ahead of me on this one, already living long and uninterrupted evenings, the phone switched off way more often than it's on? If so, I'd love to hear from you. Tell me how you do it! And how it’s received?
Or maybe late night to-do list ticking is not your particular tipple, but scrolling - and in bed (please, no. Just no!) - is something you know you do but with that slightly nauseous feeling of discomfort I spoke of in my first post. There’s a place for you in Scroll Free September, too๐Ÿ˜Š More info here.
I think Scroll Free September is a wonderful concept. It focuses much of its attention on the potential benefits to young people – and I know my children are on Instagram until late at night and try as I might, they show no signs of stopping – but I think all ages are guilty of an unhealthy dependence on our phones. 

I’m not preaching. I’m guilty. I just want to live a long and healthy life and I want other people to be alive to do that with me.

Wednesday, 14 August 2019

Trying to Sleep

I was writing a review of the fantastically fascinating, engaging and entertaining (I liked this book) Why We Sleep by Matthew Walker and realised that as I typed, I had that sludgy, slightly nauseous feeling of discomfort, commonly known as: someone is trying to tell me something.

I’m pushing it on that old sleep thing again. 

Again.

Maybe a sequel to Tea & Chemo should be the trials and tribulations of getting enough sleep? Although I fear the book would be very short and very repetitive, here's the blurb: she wants to sleep, she knows she should sleep but she finds it so very difficult to go to bed. And repeat.

The bottom line is, I want it all, but I just can’t squeeze it all in. And the truth is that when I skimp on the sleep, I can.

When I examine my work, it’s the wealth of correspondence which weighs me down. I am always in debt and never, ever get to the bottom of my RSVPs before the next deluge soaks my day.

I remember the headline a year ago about paying employees for correspondence outside of office hours because researchers had discovered that people were spending their travel time to and from work, and more time once they’d got through their own front door, catching up on emails.

No sh** Sherlock.

How many of us have a love/hate relationship with our phone? True, it makes me smile when a message comes in. It's useful always having my camera with me and iPlayer and books on Audible streamed into my hearing aids have accompanied me on many a hot-foot to an appointment. But what started out for all of us as a great use of time as the train transported us to our destination flying through emails, reports, links and 'pre-reading' for tomorrow's meeting just a few short hours away -  has only lengthened our working day. And I don’t like that part one single bit.

Worse, when in the news yesterday we hear that a group of MPs are urging the government to look into the effect of hands-free phoning on our driving, there’s an instant backlash of people saying they can’t manage their job without using the phone in the car. The fact is, we can’t work from the next life, either, and more’s the sobering point, work would seem much less of a priority if we were coping with having killed or injured somebody because we lost concentration at the wheel. 

Nonetheless, the truth is that in the world we live in, some jobs wouldn’t be viable without people being able to communicate from behind the wheel. End of. We have built a society which relies on people working at work, before work, after work and travelling to and from work. And unless this is forced to unilaterally shift, I can’t see that this state of affairs is going to change for the better any time soon, as we continue careering forward in this ever increasingly techno future.

The problem is the speed of it all, isn’t it. I remember the good old days of freelance copywriting, when I had to tootle off to the post office three days before my deadline, with a floppy disk and a hard copy of the writing in question, all packed up ready to trundle off to the destination of my assignment. For the following week, while I awaited its delivery and the typed letter in return, I could Do Something Else.

These days, ticking off the to-do list doesn’t shorten it, does it? Because once we respond, the reply comes back, and quickly, generally, because we’re all caught in the same trap: get it done before it builds up! And so the circle continues. If we are to break the circle, it is going to have to be a conscious decision to snap it.

And what if we did snap it?

I have a plan. A real plan. And it starts in September. It’s not just a plan for me but one for everybody. We have to sign up emotionally and physically, but it’s free.

Join me?

More information in my next post ๐Ÿ˜Š

Meanwhile, here’s that review. If you routinely go to bed after midnight and wake only a few small hours later, you need to read this book


Tuesday, 30 July 2019

Give It Some Welly

I’ve been very quiet of late. I’ve either been fastened to my desk in a writing/ editing/ teaching frenzy or struck down by a parade of menieres attacks which stop me so firmly in my tracks, I’m left having to unstick my feet, heave myself back into my chair and type like a second world war typing school graduate (I’m reading the fabulous,  Dear Mrs Bird, at the moment, which is where that image came from) to try to crawl back to where I’d been before the debilitating vertigo struck. Before I’d been practically carried out of the cafรฉ at Waitrose by the person with whom I’d been having the meeting before it struck, that is, with the help of three members of staff, as well as the store manager and health and safety officer greeting me at the exit because these things have to be documented. Still, the bijoux crew of touchingly compassionate helpers waved me off me with a rather beautiful and very expensive bouquet of flowers which went a long way to erasing the humiliation of a shop full of customers thinking I’d had ten-too-many by 3pm. I’m afraid this has been the general picture of my life since the beginning of the year and my blog and social media have taken a hit.


However, I had the most perfect of motivating, energising blogging tonics last week when I was asked if I’d attend the Yorkshire Cancer Research’s Give It Some Welly event in Leeds town centre. This was to mark the 10-day countdown to Yorkshire Day on 1 August, a highly appropriate occasion to launch Give It Some WellyYorkshire Cancer Research’s (YCR) first ever region wide fundraising campaign.


I was more than happy to help in my small way, and very excited to throw miniature wellies at a target with Adil Rashid, the Yorkshire and England World Cup cricketing hero because yes, it’s not widely known, but I am a massive cricket fan. Of course I am. My Dad used to take me to Trent Bridge in the Derek Randall days when he would come out early on to the pitch and show off his fielding brilliance and his equally legendary sense of humour. What’s not to love!

I also got to meet another legend from my childhood: Harry Gration, a thoroughly down to earth, non-super-starry superstar who was as excited as I was to meet Adil Rashid and as interested as I was in Yorkshire Cancer Research’s campaign.

But then it got a bit more serious. I was shocked, really shocked to hear that Yorkshire has one of the highest incidence and mortality rates in the country. It slapped me around the face a bit, I’ll be honest. It made me even more grateful to be one of the lucky ones who survived an, ‘it’s very fast growing’ cancer. It was the type of breast cancer that had it been thirty years ago, I’d have been relying far too heavily on a welly-load of luck to have survived. Pre the wonder drug of Herceptin (Trastuzumab) which has been available on the NHS only since 2006, all the cards would have been in cancer’s hands.

Herceptin and the myriad of new drugs and pioneering treatments which have raised the odds of cancer survival significantly over the past few decades, are the result of research. Without research, they wouldn’t exist. And without funding, there is no research. If we want survival rates to keep on improving, research will need funding. And that is one of the aims of the Give It Some Welly campaign.

Awareness of the importance of taking up screening opportunities is another tool in the armoury to bring down cancer deaths. Take-up is disappointingly low in many parts of the region and yet it could alert us to a cancer forming way before a lump might have forced us to the doctor’s. Whilst early detection won’t stop us getting cancer, it might stop us dying from it. Generally, the earlier cancer is caught, the higher the chance of survival. As somebody who’s gone through cancer treatment and the mental turmoil of dicing with death, trust me, if I receive a letter to attend or make an appointment for screening, it’s done before it’s even made it to my to-do list.

This isn’t a competition, but the thing is, if higher survival rates are achievable elsewhere in the country, then of course they’re achievable here. YCR needs to raise 10 million pounds every year for the next ten to reach its £100 million target. Fundraising starts on Thursday 1 August and Yorkshire peeps, it needs us!

The wonderful thing about this campaign is that it’s so easy and cheap, if not, free, to take part. Anything goes, however loosely themed around a welly you want to make your fundraising event: decorate your wellies, arrange flowers in them, wear them to work or don’t wear them to work (if you’re a farmer) wang them, convert them, build a tower out of them, it really doesn’t matter.

I have to say, my heart is in wanging them but I think I’m going to struggle to sort my wellies out before 1 August. However, if you see me and hopefully a small but perfectly formed crowd in a field in our North Yorkshire village some time in August, hopelessly (in my case – discus and shot never were my forte) tossing wellies in a vague direction and cheering and laughing hysterically, it might just be part of the campaign. Come and join us! And/or why not set up your own fundraiser?? You can find all the information you need, here. 

Happy welly wanging!

And don’t forget, please donate when you can, and attend those screening appointments. You know it makes sense ๐Ÿ˜Š

Thursday, 4 April 2019

Dealing with Pain


Back in those terrifyingly warm days in February, I asked for your advice regarding pain remedies and what you found to work in your own pain management.

I was cheating preparing for a talk on pain management from the ‘customer’ angle and suspected that there was a lot I didn’t know. The talk was to take place in March as part of the 2019 Yorkshire Cancer Research conference: Let’s Talk About Cancer.

I say, ‘was’. Alas, due – thankfully – to nothing to do with cancer, but the return of Mรฉniรจres disease which I thought I’d booted into touch in those heady days of my thirties, I had to cancel my talk. The disease isn’t very pleasant but isn’t life threatening and I find the unpredictably of the attacks of vertigo and sickness it brings, as painful as the attacks themselves because I am forced to become unreliable. I can’t commit to public events knowing that I might be crawling along the floor, or sitting bolt upright staring at the wall with a bowl under my chin, when an audience is waiting for me to speak - or worse, as I'm speaking. Can you imagine!
The good news is that the very lovely, understanding people at Yorkshire Cancer Research (YCR) quickly managed to fill my slot and I have heard from many sources that the conference was a massive success.

Meanwhile, I thought the least I could do would be to cobble together the responses you kind people had bothered to send via the blog, FaceBook and Twitter and post them here. Some I’d forgotten about, and others were new to me, so I hope that this might serve as useful resource if you sadly find yourself in need of something bigger and more enduring than a paracetamol – not that I’m dissing the lonely paracetamol, you understand, paracetamol has saved the day for me on many occasions. I have to say this because I have this slightly disturbing imagination which throws my mind headlong into the family medical box and sees a box of paracetamol sombre, rejected and wondering why on earth it bothers.

I know, it’s a worry.

Before we really start, I’d like to add a note of positivity for anybody with the misfortune to have been recently diagnosed with Menieres disease. It isn’t curable (although does tend to peter out, hopefully never to return) but is often treatable. I am now on a fairly innocuous medication that hasn’t stopped the attacks but has made them much less severe and less frequent. I’m hoping that with continued tweaking I will have enough control over the disease going forward to return to normal life including full attendance at public and social gatherings ๐Ÿ˜Š

And this means that I secretly hope that I will manage to attend the next YCR conference and be able to babble on about pain management without incident, not least because I’d already prepared the talk before I’d cancelled – typical!

Obviously the below isn’t an exhaustive list (and please do let me know your additions) but it is the word - summarised or as a direct quote - from the ground, from the coal face, of making pain slightly easier to bear. Even though there is a bias towards cancer in the responses, much will be relevant whatever the cause of discomfort.

Acupuncture: for mental well-being, aches and pains and hot sweats, and other complementary and alternative therapies.

Distractions: anything with friends and family; colouring, crafting, reading and writing (for mild pain – I knew it was bad when I couldn’t blot out the pain well enough to read or write) and oh, so many other hobbies.

Endorphins: warm, soapy baths (lots of people mentioned hot baths!); Epsom salt baths (with the added bonus of nice, soft skin afterwards) singing and playing instruments; walking, running, swimming and other (gentle) exercising; just being outside - preferably in the sun; dancing on the spot to alleviate restless legs (but it also made me laugh); being active.

Heat pads and hot compresses to soothe sore and tired limbs and muscles, can also help with restless legs.

Infrared sauna: ‘it’s like a sauna that you sit in, but there is no heat. You are baked in infrared light. It heats the blood rather than the skin and improves circulation.'

Mindfulness, meditation and other cognitive therapies.

Reflexology: for general aches and pains and mental well-being.

Reiki: ‘as a Reiki therapist, I’ve helped treat many people undergoing cancer treatments. On a superficial level, it helps to calm their minds from what is such an emotional part of their lives, but does also provide (on many occasions) pain relief as well.’

Soft Toothbrush (!): this had to go in as my pitifully sore mouth is a strong memory of my chemo days. For the ulcers there are stronger topical medicines available on prescription so do visit your doctor, and if the idea of navigating the sores as you clean your teeth is terrifying, try a really soft toothbrush soaked first in hot water. 

Stretching: particularly after Aqua Fit, a hot bath and general exercise.

Steroid cream: for pain in the veins. Also, please note: ‘…I went back to good old fashioned nature - pure aromatherapy lavender oil and hot compresses- working a treat- I'd say take the drugs for sure but don't forget about the healing powers of nature and a good old fashioned positive mental attitude.’

One last thought on pain management.
As a daughter of a nurse, I knew that I’d have to collapse in a heap on the floor and be unable to answer what day of the week it was before I’d be granted a day off school sick. I think this is why I spent my early adulthood with the box of paracetamol – there I go again – being out of date before I opened it, and drinking my body weight in water before I’d even approach the medical box.

But since cancer and a few operations over the years, I've had to retrain my psyche on this. I've had it explained that pain stresses the body with the result that it doesn't function and thus recover as quickly as it might if it were in less pain. I’ve decided that alongside natural boosts of our endorphins, medicines can be our friend and some of the medications to combat the side effects of cancer treatments can be the best buddy ever. Whatever your strategy: medicine, holistic, alternative or a combination, be kind to yourself and use it! Life is too short to stoically suffer in silence...


I wish you a happy and pain-free or pain-eased week ๐Ÿ˜™