We are still in the middle of the global Covid 19 pandemic, complete with its various derivatives and variants. Many countries are overrun by the pandemic and thousands of people are dying every week.

The Olympic Games is the biggest event on the planet and will attract many millions of people from all over the world to Japan to watch the Games. Those people may be carriers of the disease and could infect millions in Japan and also, when those millions return home to their countries they could be taking the disease, and possible variants back to their own countries with devastating effects.

This would create yet another wave, a much bigger wave of the disease across the globe. To put it simply, to allow the Olympic Games to go ahead would be an act of gross irresponsibility and negligence on a scale never witnessed before.

The Games simply have to be cancelled and the sooner then better.

It would be an economic disaster for Japan if it was cancelled, of that there is little doubt, but i have a recommendation. The 2024 and 2028 Games have been awarded to Paris and Los Angeles respectively. The award process usually occurs around 7 years before the Games to allow the host city to build the necessary infrastructure, stadia and the like.

So, cancel the 2020 Games and award the next available Games, in this case, the 2032 Games unopposed to Tokyo. It is only fair to do that and then allow the normal process to follow on for future Games beyond 2032.

I know this will mean that some athletes may never get the chance to represent their country and perhaps win a gold medal. It may have taken them ten years or more of dedication and training, sacrifice and commitment to qualify and to have that taken from them is a travesty. But, what is the alternative? A bigger global pandemic, more thousands and potentially hundreds of thousands of people killed by this disease?

No, it simply cannot be allowed to happen, which is why, the IOC should come out now and state that the 2020 Olympic Games in Tokyo are cancelled.

It is the only decent and humane thing to do. It is the right thing to do for the benefit of mankind.

#Tokyo2020 #Olymicgames #covid19 #responsibility #IOC

Here is a post about what it is like doing a simple thing from the point of view of my Asperger’s Syndrome.

A day out with my Asperger’s

It was approaching two in the afternoon and I had washed up after dinner and made sure that my room was how I wanted it. I had an appointment later on and had to get the bus into Glasgow and as the time to depart approached, I became more nervous and twitchy about leaving the house and what would happen when I met Dave.

I checked my watch for the twentieth time in the last ten minutes and saw that I still had plenty of time, at least twenty minutes before I had to leave for the bus, but had a sudden impulse to change my shirt, maybe the polo I was wearing was too casual, what would he think? Maybe he would think I was not taking our meeting seriously enough. I rushed upstairs and changed both my jeans for trousers the polo for a smart casual shirt and rushed to check that it was smart enough.

Damn! Now that I was okay, I realised that I should have had a shave, a day of stubble would ruin how I would look. Too late, there wasn’t enough time, so it would have to do, but it played on my mind as I tidied up the pile of clothes on the bed.

You idiot! You should have had a shave this morning.

I went downstairs and checked my watch again, still ten minutes before I needed to leave. I checked my shoes were clean for the fifth time today and worried that if I wore my coat I would be too hot, but if I wore the jacket I would maybe look too smart. What if Dave turned up in jeans and a tee shirt? I would look over dressed. Damn it! So many decisions to make and so many possible outcomes that I couldn’t think straight, so realising I didn’t have the time to change anything, I checked the back door again, it was locked. Of course it was, it was locked the last five times I checked it today, but still, I had to check, just to be sure.

Patting myself down for my wallet, keys and bus pass I panicked. Yanking my wallet from the pocket in a fury I opened it to find the thirty pounds that I had put there earlier. Somehow it hadn’t miraculously disappeared. But, like the back door, I had to check to make sure.

I looked at my watch again and realised that I had to leave, so everything else would have to do as it was, including the kettle that I hadn’t filled for when I returned.

I opened the front door, took a last look at the house making a note of where everything was and headed out, locking the door on my way. Before I had got to the end of the road my head was filled with worry about the back door, the fridge door, it had a tendency to drift open if not shut fully and all of my cold meat would be ruined when I returned. I tried to reassure myself that everything was okay, that I had checked everything, but those demons were there, nipping away at the edges of my consciousness that something was wrong.

I got to the bus stop in good time, checked my watch and looked at the time table on the lamppost. I was ten minutes early. Good. I had time to calm down and think about how busy the bus would be and if I would be able to get a double seat to myself before the steps to the back of the bus. That only gave me two or three rows to sit in, but it was mid-afternoon, surely the bus wouldn’t be jammed. It was also early enough not to be full of energetic school kids.

A thought flashed through my head, where’s my bus pass?

Panic!

Wait, take a few breaths and check your pockets and there it is. Now, with the bus due soon, do I keep it in my pocket or do I hold onto it?

Wait again, someone is approaching me. Are they coming for the bus and will stand beside me or are they just passing by to get further up the street or to the corner shop up there? What if they talk to me, what will they say? How should I respond? I try not to make eye contact and look away hoping that they will just ignore me and walk by.

Having this person, this stranger, so close is making me uncomfortable. I feel myself tense up and my breathing shallows. Please go away.

Phew! Thankfully they walk by and don’t say anything, result! I calm down a little and see the thing I want to see, the bus. It’s just down the road and will be here in under a minute. I start to count out the seconds in my head to see if I’m right. I stick out my hand, the bus pass firmly in my grasp and hope that the driver has seen me. He must have seen me, surely, but no, the indicator isn’t on yet, maybe he’s going to drive past and leave me stranded and I’ll be late for my meeting, Dave will tell everyone that I can’t be relied upon and am a waste of space.

Relief again, the indicator is on and the bus slows noticeably. I put my hand down and see someone waiting to get off and stand back a couple of paces to give them space. The rest of the process to get on the bus passes without incident and I’m in luck, the second row on the curb side is empty and I grab a paper and sit at the window seat, clutching my bag and the paper.

Now at the mercy of someone else’s work I try to relax and gaze out of the window wondering what the people I see are doing and thinking about. There’s a middle aged man in his garden, is he just going in or out of the house or is he waiting for someone or something to happen? I don’t know, but he quickly fades as the bus rolls on down the street. Up ahead, there’s a mother with a toddler and a buggy. I hope she doesn’t sit next to me, she’ll probably sit up ahead where the buggy area is. I wait, the tension rising in my bones as she gets on and the child does a runner for the back of the bus.

Horror!

Surprisingly, a quick rebuke from the mother brings the child back to within arms reach and she sets him down on the seat next to her. The bus calms again and I try to return to a peaceful state. No good, the inner workings of my brain don’t give me a moment’s respite and several images fill the space in front of me. Like being inside a sphere of a thousand video screens, at any moment any number of them can appear in my field of view, my mind’s eye. Sometimes they are the wonders of the universe and nature, sometimes sport, a football, rugby or cricket match or a favourite film. Other times I’m not so lucky and can get hideous images of crimes, abuse, violence and things that would make any neurotypical person sick to the stomach or insane.

One of the most common recurring images is of the Hindenburg disaster at the moment the blazing ship falls out of the sky onto the ground with people running for their lives like ants. As I type it the ship falls in a grotesque slow motion dance to its death.

I can’t stop the images, I can’t change what I see, all I can do is try to ignore them and hope that if I focus hard on something “nice” the other images will go away, for a moment. But, every time I connect to my inner head, the images return, 24/7.

I take stock of where we are, good, over half way there. I check my watch again, yes, I’m in good time and will probably be early. That suits me, I would rather be a hour early than a minute late. Lateness is tardy, the poor mark of a man, poor planning, and I hate it with a vengeance.

Eventually the bus swings around the final corner to my stop in George Square and I press the button, but not too early. There is a queue of people waiting to get on and there is nowhere for me to get onto the pavement. I can’t get off if they’re blocking my path. The bus stops, the doors open and a reluctant small path is cleared for me to get off and grasping my bag and paper, I alight.

I’m immediately struck by the noise. Of cars and busses and dozens of people in close proximity, my senses are on heightened alert. Bit parts of others’ conversations invade my ears and I try to block them out, there they’re too pervasive, too intense, too close.

I could scream, run back on the bus, jaunt to my room at home, my sanctuary where I have some level of control. This randomness and chaos are overwhelming.

Too many people coming at me from so many directions, many on their phones, elbows jutting out like sideways battering rams clearing their path. Bags bash my legs, people ignore their impact on others as they scurry around desperate to reach their destination without so much as a by your leave for anyone else.

My destination is a short walk away and I set off with that place as my focus, the place where I can get out of this maddening crowd and seek comfort in fewer people being quiet, having discrete conversations. I have to cross St. Vincent Street and there is no way across without waiting for the green man. Traffic lights turn to red and off I go trying to get ahead of the crowd in my own small piece of space away from the others who follow quickly behind. I swerve to avoid the war like battle line of people approaching me.

It is now a short walk maybe fifty metres and I dodge way through the crowd, grad the phosphor bronze handle and push. Within seconds, the quiet, peaceful atmosphere drops my state of alert from Defcon four to two and I fumble for my wallet to produce my guest members card. The lady smiles sweetly and I explain I’m meeting someone.

I head for the refreshment area and fix myself a mug of tea, take a look around at who is there, grab a few biscuits and find somewhere to sit on the ground floor as I wait for Dave. Do I take off my jacket now, or wait for Dave to arrive? I am between thoughts so I find a chair on the outside of the room, sit as I am and have a biscuit to help me relax.

Now calmer, I check my watch, I have twenty minutes before our scheduled meeting and this pleases me. No calamitous event en route has eaten into my emergency time and I have time to check my notes and the printed off emails that we had exchanged last week to set up the meeting.

I can feel my blood pressure falling and take a few deep breaths and fully take in who is in the room and feel their stories oozing from them into the ether.

A cold draft catches my legs, I look towards the door, it’s Dave, he is dressed similar to me and relief floods through me. I don’t look out of place, I am fitting in with others here and it feels like it is going to be a successful meeting. I stand to greet him.

#Aspergers #Aspergerssyndrome #sensory #feelings #alone #solo #outside #overwhelm #people #inclusion

Today on my purpleandrew blog I am delighted to be interviewing Mandy Brown about her new book, “Nipples to Kneecaps, to die or not to die with cancer.” This truly inspirational books tells the story of her husband Steve’s diagnosis with terminal cancer 30 years ago and how together, they beat the odds.

Question 1. Tell me a bit about you.

I love the sea, painting, singing, the colour purple and having family and friends visiting from UK and abroad!
Steve and I have three grown up children. One who will do anything for a Beano annual (he is deafblind and autistic): one who organises and loves LARP and one who is an amazing dog trainer!
After being qualified as a teacher (1984), I worked as a teacher of the deaf, an intervenor (for deafblind), a special needs teacher and became a fully qualified BSL sign language interpreter (1995).
To further my understanding of the body and mind I studied psychology, nutrition, iridology, herbalism, Swedish massage and epigenetics.

Question 2. What made you first go to the doctor when Steve became ill?

Steve collapsed in great pain several times. Each time he was rushed to hospital or doctors. The doctors simply did not even consider cancer being the cause until it was too late.

Question 3. During that time of Steve’s limited life expectancy, those 3 months, what was the one thing that made you not give up?

Belief he would not die and Steve and I were in this 100% together.

Question 4. Did you ever see the consultant again after Steve was healed and if so, what did he say or account for Steve’s new-found health?

Yes, still said it was a miracle and, “Whatever you are doing, just keep doing it.”

Question 5. How did you manage your family life during those three months, or however long it was before Steve became well?

Just got on with it. Tried to do ‘usual things’ and routine like playing squash, playing piano, having friends visit and attempted to make cancer related things like hospital visits, repacking wounds, vomiting the new norm and often joked about them. The only thing I could not do is go to work. We involved Alex and my parents in routine of sick bowls, physio, meditations, healing sessions etc.

Question 6. Your beliefs or faith is strong. Would you say that was a factor in helping Steve’s recovery?

You have to remember as a family we did not have a strong ’belief’ or ‘faith’ as such in the beginning. Yes, I had my inner unfaltering belief (which took root the night before it was confirmed he had terminal cancer) that Steve could beat this and yes it was a major factor in helping Steve’s recovery.

Question 7. It is a wonderful story, what made you want to share it now?

Over the years, we have (as a family) shared Steve’s story and, I believe, given hope and inspiration to all those who have heard it. However, I waited thirty years to publish Nipples to Kneecaps for the following three reasons.
1. Steve had three seemingly impossible goals to fulfil, which all involved a time factor – he has now achieved them.
2. Some people with cancer go into remission only to have it reappear five, seven, or even twelve years later. I wanted to make sure that Steve wasn’t in ‘remission’ but cured. I think a thirty-year run is long enough, don’t you?
3. Last year, Steve finally chose to watch a film about cancer. Up until then he would always turn off any programmes related to hospitals, cancer wards or cancer patients.

Question 8. What would you say to others who may be in a similar situation at the moment.

It is your individual journey to embrace. However, please read Steve’s story and take from it what you think will help you on that journey. Don’t accept a doctor’s opinion that you have x months to live. if you feel that you can fight, want to fight and something inside you knows it’s not your time…then fight, ask for a second opinion, a third opinion even and start taking back control over your own body. You should decide what happens to it. You decide what and when things happen on your journey. Don’t be afraid to question, refuse and lay out what you feel is best for you. Remember Steve’s story and use that to give you strength.

Question 9. Why “Nipples to Kneecaps?” It seems an odd choice for an inspirational story?

You will have to read the book to find that out.

Question 10. Tell me about your writing, what else have you/are you writing?

I have written two short stories for competitions: ‘Skate For Love’ (Romance) and ‘Apple Cake From The Grave’ (Paranormal), both were selected for publication. This gave me the confidence that someone out there liked my writing style.
I have written lots of short children’s stories over the years for my students and my own children. I am now publishing some of them such as ‘Bonegirl’, a supernatural shamanic mystery for children suitable for 9- 10 age range. ‘Bonegirl’ is on pre order in Amazon. The next ones in line are ‘Chicken Spots’, ‘Spotty Nose Eleven’, ‘Magic Herbs’ (fantasy series).
I also want to polish up and get my other books out there: ‘He’ll Never Talk’ (a true, inspirational story about our deaf blind son) and ‘The Devil’s Daughter’ (adult paranormal romance) and many more…
Yet to be written: Book 2 of the Bonegirl series.
Ever since I wrote and put on my first play in Junior School – a puppet version of Beauty & the Beast, I have continued in my passion for writing. However, only now am I finally putting my stories into print! I do have a list of books ready to polish and write.

Question 11. How can people get the book and where can they find you/contact you?

Buy Direct Amazon

Amazon Author Page https://www.amazon.co.uk/Mandy-Brown/e/B076FWQCXY
My website and blog:
Nipples to Kneecaps
https://www.nipplestokneecaps.com (Can subscribe for new releases info) https://www.nipplestokneecaps.com/blog
Facebook Page:
Nipples to Kneecaps – to die or not to die with cancer https://www.facebook.com/mandybrownauthor/
Twitter:

Tweets by mandybrownautho

Instagram:
https://www.instagram.com/mandystevebrown/ and https://www.instagram.com/nipplestokneecaps/
LinkedIn:
https://www.linkedin.com/in/mandybrown1
Thank you Mandy for a wonderful insight into your story. A truly inspirational account of a family pulling together through the toughest of circumstances.

November is always an important month for us because it marks another year of remission for Leslie following her cancer surgery and chemotherapy. This is year 2 of remission and now 7 and a half years since the operation.

The word “Cancer” is a game changing word. I am sure all of us know someone in our family or friends who has had cancer and their story of that encounter will have all of its trials and tribulations. Some outcomes are successful, others, sadly are not.

Leslie and I have never thought of her “encounter with cancer” as anything other than an encounter. Neither of us felt any threat from it and we worked our way through it as best we could from day to day.

There were bad days, that is certain. You could set your watch by when the hit from chemo happened. Three in the afternoon, two days after the chemo. Bang, like being hit by a bus, Leslie was ill. Violently ill, but when you think about it, she was being poisoned, so it was bound to do something to her system. But it was necessary and she bore it amazingly well and bounced back every time.

We were in it together, we didn’t tell many people because we didn’t want their negativity to change our focus on getting better, being well and being around for a long time afterwards.

November, the milestone month, but one that we acknowledge without fuss. It is just a date on the wall, a number. Leslie is far greater than any number and we both know there is a future ahead of us.

Wednesday this week was a very understated but significant day for Leslie and I. With little fuss and a whole bucket of professionalism and love, Leslie was discharged by the oncologist after 5 years clear after her chemotherapy.

It was just a normal everyday day here in Glasgow, but one that we knew would come and pass us by in the manner it did, just another day. That feels fantastic.

So, as I sit here and type I ask myself just one question, where on earth did those 5 years go? It feels like a short few weeks, maybe a month or two, but not five years. But it has been and in that time we have moved house twice and been through all that we have with my circumstances and ridden the wave, to land on the sandy shore with only a bruise or two to show for it.

Well done Leslie!

How time flies!

I was just looking back through my blog spread sheet when I realised that it has been some time since I posted an update on Leslie here. So here it is.

Leslie is doing just fine, really good and she is now on 6 monthly check ups with the oncologist as it is now 3.5 years since the chemo finished and 4 years since the operation.

We are looking forward rather than looking over our shoulders and making brighter plans about where our next 5 years will take us.

There are still the sleepless nights and irregular sleep patterns that see us like ships in the night, the varying and sporadic appetite yet there is definitely a sense of being well in the air rather than still being considered or labelled “a patient.” Mind-set is a very powerful tool, and Leslie has that in abundance.

So, we look forward to what the summer will  bring and what new challenges and changes can be manifest to make it better for both of us.

Thanks for popping by and until next time, be well.

 

 

Well, after 3 years or so it is time to introduce Leslie to you all. Leslie about whom this blog is and our journey with her encounter with cancer back in 2010, just after we were married.

This is Leslie’s post about recovery,

One thing about this ‘recovery’ business is just that – the recovery. Over the past three years I have been recovering not just from things but to things. I have recovered my curiosity, my creativity and my drive. Though in fact I have to re – cover all of that and sleep for copious hours in order to recover my energy.
Recovery: – noun – the act of returning to normal, the process of regaining health, improvement, the act of regaining possession.
Wow that is a lot to be getting on with just for starters. Within all that though is the being aware and awake to all that has happened, is happening and could yet happen.
That last part is the most interesting piece of the puzzle because the largest proportion of that is within my remit.
Yes I have the final say in how that goes.
Right in the middle of all this convalescing was the connection – the perspective of all the dots being joined.
As a youngster I loved those join the dot puzzles, did you? They are a good pointer for life though we don’t recognise it at the time and some of us not until we are way down the road we should have turned off of.
All the things I have experienced and learned, all the situations that seemed random at the time, all the people who came into or left my life, the who, the how, the when, even the why is clearer with perspective.
If we are too close to the puzzle we may miss the whole picture.
All of these conspired (?) to bring me to this space and time with these life experiences.
All have allowed me to take this challenge on without the burden of fear, and that has made all the difference.
In the wee small hours when fear lurks in the shadows of your mind and you seek out the memories of times gone by and begin the wishful thinking, ‘I wish I had done that, said that, seen that, etc.’
That is the time to say, ‘ah I am so glad I did that, met them, understood that, was there for that, ‘how strong was that person how would they deal with this?’
Trace the map of your dots back in time and be grateful for ALL OF THAT because in there is the picture of how to get through THIS!
Sometimes is seems like it is taking forever, and time is such a precious commodity, now – when we are late in the day and suddenly there is still so much to do – but wait…there is no waste of time when you are in recovery because you are taking your time to re-connect with yourself and to learn the new rhythm, learn to dance to the drum of this new dance…and the beat goes on.

Hi folks
Just thought I let you all know that I have 5 blogs here on wordpress and although you may be aware of one or two, you may not know of all of them.
Then are 2 for writing, firstly http://www.thrillingwriting.wordpress.com
it contains information for writers and writing, but has snippets and teasers for my forthcoming adult crime thriller The Truth
There is my other bog for writing, http://www.fendrelstale.wordpress.com.
It contains information for writers and writing as well as some snippets and teasers for my forthcoming fantasy faery story trilogy Fendrel’s Tale. Volume 1 – The One Who Will Come
Away from writing, I have a blog for my random musings and thoughts on life and so on, http://www.purpleandblues.wordpress.com.
My oldest blog is http://www.purpleandrew.wordpress.com. This tells the tale off my wife’s encounter with cancer back in 2009 and our journey with that, the chemotherapy and the near 3 year long recovery.
Finally, there is http://www.fodmapandus.wordpress.com. I have IBS and have been on the Low FODMAP diet for several months now. It is being a big help and on this blog I enclose my experiences with the various phases the diet and recipes for foods that are non gluten and non lactose. This includes, biscuits, shortbread, a great loaf of bread and other handy recipes and tips for those on a gluten free or lactose free diet.
Why not cross over and check out my other blogs, who knows, there may just be something there for everyone.

It is now just over 3 years since the start of Leslie’s chemotherapy and if you had said to us back then, or a month before when we waited for the operation that this is where we would be right now, I don’t think either of us would have done anything other than bite you hand off and take it.

I am not saying it has been easy, no Sir, it hasn’t, but, and I hope Leslie will forgive this one, it has not been really really bad. Oh I know when the chemo hit it was awful, she was in a lot of pain and discomfort, the side effects of vomiting and diarrhea were not something that either of us would wish again, but when you consider the alternative, I for one would have taken our lot and said it was not a bad experience.

We wouldn’t volunteer for it again, but if, heaven forbid, either of us needed it again, I don’t think there would be much negative thought before we said, okay. The one proviso to that is the oncologists prediction of like outcome.

Now, we are in a better place, but far from ideal, we are still skint and reliant on the State and in the current climate, that is a full time job and enough of a worry as it is. But, we are hear, together, still able to get cross with each other without it being personal or vindictive and hopes rise for what lies ahead.

Leslie is looking at going to University and I am writing books like I was shelling peas. I have been looking back at the posts on this blog today and one thing struck me. I did a post on 7 July 2010 entitled “Eyes Opened At The Beatson” where we saw a baby in arms being taken in for chemo by a young couple who looked as though their world had ended. In truth, although I do not know, I suspect that their baby, their precious child did not make it. I could be wrong, but part of me hopes, (that is the wrong word, I can’t find the right one, it probably doesn’t exist in English) that the child didn’t make it and it was quick and as painless as it could be.

If the child had made it, as a parent myself, I do not know if I could have stood the worry for twenty years, maybe even a lifetime, that one day, a normal childhood illness or fever wasn’t normal at all and “IT” had come back. It is tough enough worrying about them crossing the road, going to school, playing in the garden without that burden hanging over you day after day.

I do now know if i could have coped with that, so, as I said earlier, we would have taken where we are now and snapped your hand off to have it.

Such is life and it is not easy, even when things are going well, but when there is adversity, the strength of human courage and will really shows us what we are made of.

Perspective, it is all about perspective.

Well folks, here we are three years since the diagnosis with the Big C and nearly 2.5 years since the last of 6 chemo sessions.
How are we doing? you ask.
Well i shall tell you.
Health wise, Leslie has had done fantastically through all of this. The only “thing” that we have to manage as a result of the chemo is the peripheral neuropathy (lack of sensation in feet and hands).
All the check-up’s with oncologist have been positive and good and Leslie is now on 6 monthly check ups and we have every reason to think that after the next one, this will go to 9 or 12 months.
The medical problems before remain, the ME being a biggy, but we try to manage that as best we can.
So, why the blog?
The news these days is full of doom and gloom, and to be fair, there can be a lot of it, especially for those struggling on low incomes and benefit.
This is a good news post, but it does come with a hint of sadness. My aunt died of the same thing that Leslie had about 6 weeks ago. In Leslie’s case, we caught the C before it erupted out of the womb, sadly, for my aunt, it had spread too far and was in all her soft tissue. It was not a pleasant experience for her or the family.
So, the message is, be aware of your body and if something doesn’t feel right, it probably isn’t, go get it checked out. Don’t accept standard doctor answers, like “it’s your age, it’s the menopause, it’s your weight etc etc.” Understand that you have the right to answers and properly done you can get them.
If you find something you don’t expect, go get it checked out.
This applies to men as well as women, get it checked out and check your body yourself. What is that lump?, why is this sore? and so on. Don’t think it will go away.
We shall let you know more sometime soon.