Things are a little rough at the minute, part of which
resulted in my completely and utterly loosing it last Thursday, blowing
my top and marching out of the house, well as best as one could with a
walking stick, and heading north for a few days . Dave and I are both
stressed out, tired, frustrated not so much with each other but with the
demands made upon his time, and not enough on mine
because I can't *DO* anything due of 'health 'n safety', getting
fatigued easily etc.
What tipped the balance was some stupid
drunk/drugged up female we don't know from Adam, starting to kick our
back gate in last week. Dave and a friend of his were trying to stop her
and push her back out (she had some gormless boyfriend who seems to be
part of a bunch of idiots who like to gather in our back alley, looking
on). I heard the commotion, utterly and completely blew my top, shoved
Dave and his friend away so hard they fell over and almost punched the
said female out of the doorway. I lost the plot some more and bolted.
I've had 4 reasonable days up in Plymouth but am still feeling like I
want to kill someone and with Dave considering going back on anti
depressants. I'm considering getting some too. In any event what is needed is for Dave and myself to spend more *QUALITY* time together and try not to let the demands of other people/internet to get in the way.
Penzance can and is a lovely place to live in terms of community, we produce gold medal winners for a start, but I am oh SO fed up of the drunks/druggies who spend part of the time in stupid land and the other part kicking, stealing and destroying other people's properties and lives because they can and do get away with it. One thing is for sure, I have one helluva much shorter fuse than I used to and frustration is fast becoming my middle name!
Monday, 6 August 2012
Sunday, 22 July 2012
Fangirly Special: Meeting Ben Miller!
Now as some of you will know, the actor, comedian, musician and writer Ben Miller was once a fledgling graduate physicist, studying Coulomb blockades and quantum dots at St Catherine's College, Cambridge. During this time, he had to make a tough decision which would would change his life, and that was to leave the esteemed Cavendish Laboratories for the uncertain bright lights of comedy.
Nearly 20 years later he's written a book about his passion. Not yer usual 'sleb' tome, but that of a person who has never lost his love of science, being always keen to follow the discoveries and mysteries of the scientific world. The book is called 'It's Not Rocket Science' and looks at the bigger topics such as climate change, astronomy, Higgs Bosons etc. He seeks to explain concepts and ideas that most of us not blessed with a scientific and academic brain, would very likely avoid out of the idea it would be boring and too hard to understand.
I love what I have read so far, although having to do so slowly while really, really wishing that there was someone like Ben around when I was younger, to inspire and encourage me on further to achieve my dream of studying the oceans. That passion and enthusiasm came across very much during his interview and talk at the Royal Institute last night (19.7.2012 7pm - 8.30pm). This was to launch his book, the aim of which is to introduce the curious at the amateur level to the joy of science (I think that was a working title in the beginning!), to make it accessible. I agree with him when he says that science SHOULD be accessible to all. For example, it's not a good thing to stream children either to arts/humanities or science only, at such a young age and have the potential to enjoy both at any level denied them.
Reading about the Sagittarius A star black hole in the centre of our galaxy, or climate change has to be digested slowly, but is an eye opener for the likes of me, who could only fantasize about science without really being able to feel a part of it so to speak. Feeling a bit like the child who would be forced to watch a feast from a distance, but not be encouraged to be a part of because of my unworthy lack of scientific intelligence. What Ben has done is to open up that wonder again, not by handing science on a plate so to speak, but to encourage you on the journey where although sometimes a concept can seem too big (or small in the case of quantum mechanics) to grasp, he does demonstrate that if you have the admiration and desire to learn even only at the most basic level, you can and do have the intelligence to work things through and take delight in that.
Ben does this by a fantastic teaching method using humorous comparisons and analogies and I seriously think does a better job of it than Prof. Brian Cox! Anyway, rather than my continuing to gush about the book, why not go out and buy it for yourself. £12.99 for the paperback version and about £16.99 as a download via Audible, but you'll need their player. It'll be worth it!
What I found with Ben Miller is delightful! I had known about his role as James Lester in 'Primeval' and his being a comedy partner of Alexander Armstrong, who currently presents 'Pointless' on the BBC. I vaguely remember Ben's dyed blond hair when he was younger, although I must confess I prefer his natural brown locks. But in all, Ben has a great range of talents, including being also a musician, but we don't get to see that side of him as much, which is sad.
He's played everything so far from a being a comedian, to a scientist, pen pushing civil servant, psychotic National Trust ranger, evil wife killing doctor, a gay actor amongst many roles, and more recently a displaced disgruntled detective who is finding he does have a heart after all. He even produced and directed his first feature film, 'Huge' in 2009 and has directed and written for television in the past. He can be both funny and poignant on screen and his range no doubt, hasn't reached it's limits yet. All to be discovered I guess as time goes on. But what is very apparent is that he is an openly generous, friendly, enthusiastic, sensitive soul who appears to take great delight in new challenges and the world around him.
Anyway, I decided some time ago to make the effort to see Ben in person, as the best measure of a talent is to see them live. I have done this with actors Geraint Wyn Davies and William Gaunt, having seen both on stage and meeting them afterwards. Both of those gents were generous with their time and very sweet, one almost on 'friends' terms and hoping to meet up when I get the chance to head back over to Ontario. I think most actors are polite and enthusiastic, especially if you make an effort to thank them for their work. I had been too ill over the winter to see Ben in 'Ladykillers', so when I found out he would be giving a talk at the Royal Institute in London, I leaped at the chance to go.
I need to explain that now I have a huge amount of spare time on my hands, I have also become addicted to Twitter and on there have met some great gals, who are fans of Ben and we have given ourselves the hash tag of #BensBabes! I became all 'fangirly' about his work after I had 'clicked' with his character DI Richard Poole in Robert Thorogood's 'Death in Paradise' shown on BBC 1 in October of 2011. When an actor and their character 'click' with me, I get obsessed and research that person's previous work as far as possible to get a broader view of their talent, and I will confess also to sate my 'fangirly' thrill!
After a twitter session, one of us came up with the idea that if any of us should catch up with him, we should give him a gift as an appreciation and a 'thank you' from all of us for his work. So decided on a recipe book, as it is rumoured that Ben is quite the cook, although he would tell you differently. After much emailing, suggestions, trawling the internet as well as some of our own recipes, I got to work on compiling the booklet so one of us could hand it over to Ben, should one of us be lucky enough to meet him in person. So the RI talk was the perfect opportunity to do this.
I had arranged to meet up another 'BensBabe' called Claire for the day. I was supposed to have another friend with me but sadly she became ill at the last minute and could not attend. Claire is great company and was a reassuring companion in case Algy kicked off, which he nearly did once or twice! We met up, had lunch at the RI (I'm bloody well BUYING lunch next time Claire!) and had an initial look round the Faraday Museum, including the hilarious Periodic Table display, the idea of which is to hit the lighted elements, in time to an adaption of the Gilbert and Sullivan song 'Modern Major General', from of all things, 'The Pirates of Penzance' (I knew Cornwall would have to come in to this somewhere!)! However the music was using all of the periodic table as lyrics. I had heard this some time ago when we had the surviving members of the 'Bonzo Dog Doodah Band' - sans Neil Innes - play at a theatre in Penzance, that I am a trustee of*. It was great fun and we decided to come back later for more!
After that, Claire and I spent a little time wandering around the streets staring at and discussing the hugely expensive bling on offer in the shop windows. It was fun comparing said bling (some as cheap as £30k!) with our tastes. Most were lovely but the others a little too 'Katie Price' in design. But you would agree that a hair dresser and a knackered retired RGN would not be buying *any* of the bling soon! Mind you, if our other halves win the lottery, that would be a different matter altogether! Still we were brave enough to have a wander around Tiffany's as well, which was nice, but not nearly as big as their New York parent shop, from which I had purchased a present for my parents when they moved home some years before.
We returned to the RI, biding our time again by playing with the Periodic table and having a fit of the giggles, before returning upstairs to await curtain up, so to speak!
Right, on to the event itself before I lose the details.
The interior of the lecture hall has been refurbished. Gone are the wooden seats of my youth, and in their place are plush theatre type seats. The stairs though are as steep as ever! I had asked if it would be ok to go in ahead of time as I couldn't guarantee I could get up the steps so well. That was ok but the crowds came up early so we had to get in to the head of the queue quickly. We were able to get in the first row to the left of the staging area, tucking ourselves in the end of the row by an exit. I got comfortable and rummaged about with bags, sticks and what have you, securing them, or so I thought!
A brief introduction was give by the fabulously calm Olympia Brown, RI person who was Ben's assistant for the day, including helping him during an appearance on 'This Morning' earlier, where presenter Eamon Holmes was delivered of 50k volts, through a Van De Graff generator as part of some experiments Ben was showing at the time! With Ben was journalist Roger Highfield who would be 'interviewing' Ben as well as helping him keep on track.
Ben talked about his early days, from being extremely lucky to have a maths teacher who knew how to fire the enthusiasm of his pupils (something I never had. Lower stream idiots like me were often told to 'go away'.) which carried on throughout Ben's educational years. I think Ben tends to play down his abilities a bit because I know one usually cannot get anywhere NEAR a Cambridge college unless bordering on being gifted. His family were of great influence as well, encouraging a mix of arts and science appreciation through Ben's formative years. I think I am correct in saying Ben is the oldest of 3 children, with two younger sisters. Although raised in Nantwich, Cheshire, Ben was actually born at St. Bart's in London. Hell Ben, you might have even been delivered by one of my Midwifery tutors who would have been there at the time! :D
The only sad bit that did bring a lump to my throat was Ben telling the audience that his father had died the year before. One could only imagine what that must have been like for him, since it is well known Ben has been through some huge personal changes in his life over the previous couple of years, including having to work away from home for 6 months filming 'Death in Paradise' in Guadeloupe through 2011, and then with the birth of his youngest son in December 2011. I think my heart went out to all of them at that point.
It seems Ben's passion for science has never left him and he comes across as the sort of person who is interested in EVERYTHING! Despite the humour and hilarity, there were some serious points made, such as always trying to find the truth about what is happening in the world, that climate change IS something to be concerned about, plus the streaming of children between science and the arts as mentioned before, rather than blending the two disciplines, the fact science should be and is accessible to everyone. But I do have to point out that in my personal experience, I have found some of the scientific community to be as elitist as their arts/humanities counterparts, having been *very* much subjected to that kind of prejudice from both areas in the past.
I had wanted to be a Marine Biologist as a child and teen, but feel I was written off the maths approach too early by bad teaching which basically shut off the sciences to me. At the time, unless *really* smart, the assumption was that the only science little girls should be studying was 'domestic science'. I have never been really able to catch up with maths since, except when I went into nursing, two years as an 'auxiliary' then on to my training qualifying three years later as a 'Registered General Nurse' back in 1984, where I relearned arithmetic and calculus to a limited degree. Then again many years later while studying for a DipHE in Health Studies. I did that so I could bring myself up to speed with student nurse education at the time and graduated happily from the University of Plymouth back in 2006.
A DipHE might not sound much to anyone who has studied for and obtained a degree, but for someone like me who was basically written off as being 'thick' or not worth the educational effort at aged 6 onwards, it means so much as I had to find and fight my own way educationally in to nursing (after several resits to get the required 5 'O' levels, grade C or above at the time. I wasn't going to give up!) and then on in to adult education afterwards throughout my career, eventually becoming a clinical teacher, workshop leader for stress management, an NHS basic life support trainer and NVQ level 3 assessor in my own right. I hope I have always been encouraging to my students because unlike our dear Ben, I didn't get the support I felt I needed during my formative years. I know the bitter blow to one's self esteem and enthusiasm that can happen, after being told to 'try harder' and 'must be more confident', yet there was little encouragement from those around me to do so.
That was to be my pathway to a BSc in Nursing too, but sadly events overtook me health wise, so I never got the chance to finish the BSc. Ben gave up his Post grad studies because he felt he would not be able to 'lead' in anything, only be a follower. I have to disagree but then I do know what it is like when you have to wake up to the fact that your first love and ambition may not be your last, so to speak. However, I still find it a little sad that Ben felt he could not stay the course and get his doctorate, for all of his success and wonderful talent as an entertainer since then.
Getting back to the RI. It was a wonderful event, even if half way through it, jumping out of my skin and being mortified at the loud clatter of my stick slipping through the front panels we were sat behind, and landing on the floor followed by a SD card falling out of my handbag at the same time, which nearly caused me to have a seizure with poor Claire beside me having to stifle her hysterics! Despite that, Ben finished the session by that wonderful experiment of adding potassium iodide to hydrogen peroxide and causing a fountain of foamy mess! There followed a brief Q&A session afterwards which brought the session to a close. Then came the long, loud appreciative applause, well deserved in my opinion! After which all departed in to the reception area to queue to buy a copy of 'It's Not Rocket Science' and for autographs.
Ben had remained in the lecture theatre to chat to those around him for a bit. Claire and I joined in quietly as I thought that would be a better moment to quickly hand over our booklet of Caribbean based recipes to him. But I don't proof read so well, and will apologise for the numerous typos, inconsistencies in the thing, and discovering to my horror an hour or so before the event, that not all the pages are fully secured in to the comb bind! Never mind. Ben was really surprised and very pleased with his gift. Claire and I were delighted but happened next I did NOT expect! I had turned away to make our exit, when a Ben Miller shaped arm shot around my shoulders and two kisses were planted in quick succession on my left cheek! Wow! That totally threw me in a lovely way! I'll never wash my left cheek ever again! :D
I had blurted out, "did you get a picture of that!" but but poor Claire had frozen to the spot! Needless to say we were both in shock. but very, very happy that Ben liked our recipe book. I did recommend Chapter Two, the one with the cocktail recipes, plus since then Ben has stated he would be taking the booklet with him on his return to Guadeloupe, so there *might* be a bit of a party going on, who knows? Eventually it was time to move, so we went out and joined a *very* long queue of nearly everyone who attended wanting to buy the book and to have Ben's autograph. Luckily for us, a separate queue was formed for those only needing autographs. Since Claire and I had bought our copies of INRS in advance we quickly changed lanes so to speak! I asked her to take one of the four books I had on me as three other people wanted copies signing. That way the spoils could be divided up so as not to hog the man too much.
Ben graciously received us, Claire went first and we got a lovely picture of the two together. Ben then received a pile of books from me to sign (He's a very patient man!) and we briefly chatted again. He asked if Claire and I had known each other before Twitter, which we hadn't. He was also impressed I think, I had traveled up from Penzance to see him. Normally I can get a train from there to London in under 5 hours, but the route has changed so it took ages the day before. I have done the journey so often, it doesn't seem that long, however as I said to him, it took longer to come up from Penzance the evening before than it has taken me to fly to New York from Heathrow on occasions! But what I SHOULD have also said (sorry Ben!) was to point out that he had traveled much further only 48 hours or so before from Guadeloupe, via France. So you have my admiration for that, Mr Miller.
After this, Claire and I floated out of the reception area, down to the bar for a drink and a chat before we went our separate ways. It was a fantastic day and well worth every inch and minute of the journey! I have now had the privilege to meet two wonderfully kind, patient and openly generous people, one of which I hope will become a lifelong friend and the other of whom I will always admire, and hope to see in person again one day.
Thank you Clare, and THANK YOU Ben!
For my #BensBabes,
Heather a.ka. @Braintumourlady. XXXXXXX
Nearly 20 years later he's written a book about his passion. Not yer usual 'sleb' tome, but that of a person who has never lost his love of science, being always keen to follow the discoveries and mysteries of the scientific world. The book is called 'It's Not Rocket Science' and looks at the bigger topics such as climate change, astronomy, Higgs Bosons etc. He seeks to explain concepts and ideas that most of us not blessed with a scientific and academic brain, would very likely avoid out of the idea it would be boring and too hard to understand.
I love what I have read so far, although having to do so slowly while really, really wishing that there was someone like Ben around when I was younger, to inspire and encourage me on further to achieve my dream of studying the oceans. That passion and enthusiasm came across very much during his interview and talk at the Royal Institute last night (19.7.2012 7pm - 8.30pm). This was to launch his book, the aim of which is to introduce the curious at the amateur level to the joy of science (I think that was a working title in the beginning!), to make it accessible. I agree with him when he says that science SHOULD be accessible to all. For example, it's not a good thing to stream children either to arts/humanities or science only, at such a young age and have the potential to enjoy both at any level denied them.
Reading about the Sagittarius A star black hole in the centre of our galaxy, or climate change has to be digested slowly, but is an eye opener for the likes of me, who could only fantasize about science without really being able to feel a part of it so to speak. Feeling a bit like the child who would be forced to watch a feast from a distance, but not be encouraged to be a part of because of my unworthy lack of scientific intelligence. What Ben has done is to open up that wonder again, not by handing science on a plate so to speak, but to encourage you on the journey where although sometimes a concept can seem too big (or small in the case of quantum mechanics) to grasp, he does demonstrate that if you have the admiration and desire to learn even only at the most basic level, you can and do have the intelligence to work things through and take delight in that.
Ben does this by a fantastic teaching method using humorous comparisons and analogies and I seriously think does a better job of it than Prof. Brian Cox! Anyway, rather than my continuing to gush about the book, why not go out and buy it for yourself. £12.99 for the paperback version and about £16.99 as a download via Audible, but you'll need their player. It'll be worth it!
What I found with Ben Miller is delightful! I had known about his role as James Lester in 'Primeval' and his being a comedy partner of Alexander Armstrong, who currently presents 'Pointless' on the BBC. I vaguely remember Ben's dyed blond hair when he was younger, although I must confess I prefer his natural brown locks. But in all, Ben has a great range of talents, including being also a musician, but we don't get to see that side of him as much, which is sad.
He's played everything so far from a being a comedian, to a scientist, pen pushing civil servant, psychotic National Trust ranger, evil wife killing doctor, a gay actor amongst many roles, and more recently a displaced disgruntled detective who is finding he does have a heart after all. He even produced and directed his first feature film, 'Huge' in 2009 and has directed and written for television in the past. He can be both funny and poignant on screen and his range no doubt, hasn't reached it's limits yet. All to be discovered I guess as time goes on. But what is very apparent is that he is an openly generous, friendly, enthusiastic, sensitive soul who appears to take great delight in new challenges and the world around him.
Anyway, I decided some time ago to make the effort to see Ben in person, as the best measure of a talent is to see them live. I have done this with actors Geraint Wyn Davies and William Gaunt, having seen both on stage and meeting them afterwards. Both of those gents were generous with their time and very sweet, one almost on 'friends' terms and hoping to meet up when I get the chance to head back over to Ontario. I think most actors are polite and enthusiastic, especially if you make an effort to thank them for their work. I had been too ill over the winter to see Ben in 'Ladykillers', so when I found out he would be giving a talk at the Royal Institute in London, I leaped at the chance to go.
I need to explain that now I have a huge amount of spare time on my hands, I have also become addicted to Twitter and on there have met some great gals, who are fans of Ben and we have given ourselves the hash tag of #BensBabes! I became all 'fangirly' about his work after I had 'clicked' with his character DI Richard Poole in Robert Thorogood's 'Death in Paradise' shown on BBC 1 in October of 2011. When an actor and their character 'click' with me, I get obsessed and research that person's previous work as far as possible to get a broader view of their talent, and I will confess also to sate my 'fangirly' thrill!
After a twitter session, one of us came up with the idea that if any of us should catch up with him, we should give him a gift as an appreciation and a 'thank you' from all of us for his work. So decided on a recipe book, as it is rumoured that Ben is quite the cook, although he would tell you differently. After much emailing, suggestions, trawling the internet as well as some of our own recipes, I got to work on compiling the booklet so one of us could hand it over to Ben, should one of us be lucky enough to meet him in person. So the RI talk was the perfect opportunity to do this.
I had arranged to meet up another 'BensBabe' called Claire for the day. I was supposed to have another friend with me but sadly she became ill at the last minute and could not attend. Claire is great company and was a reassuring companion in case Algy kicked off, which he nearly did once or twice! We met up, had lunch at the RI (I'm bloody well BUYING lunch next time Claire!) and had an initial look round the Faraday Museum, including the hilarious Periodic Table display, the idea of which is to hit the lighted elements, in time to an adaption of the Gilbert and Sullivan song 'Modern Major General', from of all things, 'The Pirates of Penzance' (I knew Cornwall would have to come in to this somewhere!)! However the music was using all of the periodic table as lyrics. I had heard this some time ago when we had the surviving members of the 'Bonzo Dog Doodah Band' - sans Neil Innes - play at a theatre in Penzance, that I am a trustee of*. It was great fun and we decided to come back later for more!
After that, Claire and I spent a little time wandering around the streets staring at and discussing the hugely expensive bling on offer in the shop windows. It was fun comparing said bling (some as cheap as £30k!) with our tastes. Most were lovely but the others a little too 'Katie Price' in design. But you would agree that a hair dresser and a knackered retired RGN would not be buying *any* of the bling soon! Mind you, if our other halves win the lottery, that would be a different matter altogether! Still we were brave enough to have a wander around Tiffany's as well, which was nice, but not nearly as big as their New York parent shop, from which I had purchased a present for my parents when they moved home some years before.
We returned to the RI, biding our time again by playing with the Periodic table and having a fit of the giggles, before returning upstairs to await curtain up, so to speak!
Right, on to the event itself before I lose the details.
The interior of the lecture hall has been refurbished. Gone are the wooden seats of my youth, and in their place are plush theatre type seats. The stairs though are as steep as ever! I had asked if it would be ok to go in ahead of time as I couldn't guarantee I could get up the steps so well. That was ok but the crowds came up early so we had to get in to the head of the queue quickly. We were able to get in the first row to the left of the staging area, tucking ourselves in the end of the row by an exit. I got comfortable and rummaged about with bags, sticks and what have you, securing them, or so I thought!
A brief introduction was give by the fabulously calm Olympia Brown, RI person who was Ben's assistant for the day, including helping him during an appearance on 'This Morning' earlier, where presenter Eamon Holmes was delivered of 50k volts, through a Van De Graff generator as part of some experiments Ben was showing at the time! With Ben was journalist Roger Highfield who would be 'interviewing' Ben as well as helping him keep on track.
Ben talked about his early days, from being extremely lucky to have a maths teacher who knew how to fire the enthusiasm of his pupils (something I never had. Lower stream idiots like me were often told to 'go away'.) which carried on throughout Ben's educational years. I think Ben tends to play down his abilities a bit because I know one usually cannot get anywhere NEAR a Cambridge college unless bordering on being gifted. His family were of great influence as well, encouraging a mix of arts and science appreciation through Ben's formative years. I think I am correct in saying Ben is the oldest of 3 children, with two younger sisters. Although raised in Nantwich, Cheshire, Ben was actually born at St. Bart's in London. Hell Ben, you might have even been delivered by one of my Midwifery tutors who would have been there at the time! :D
The only sad bit that did bring a lump to my throat was Ben telling the audience that his father had died the year before. One could only imagine what that must have been like for him, since it is well known Ben has been through some huge personal changes in his life over the previous couple of years, including having to work away from home for 6 months filming 'Death in Paradise' in Guadeloupe through 2011, and then with the birth of his youngest son in December 2011. I think my heart went out to all of them at that point.
It seems Ben's passion for science has never left him and he comes across as the sort of person who is interested in EVERYTHING! Despite the humour and hilarity, there were some serious points made, such as always trying to find the truth about what is happening in the world, that climate change IS something to be concerned about, plus the streaming of children between science and the arts as mentioned before, rather than blending the two disciplines, the fact science should be and is accessible to everyone. But I do have to point out that in my personal experience, I have found some of the scientific community to be as elitist as their arts/humanities counterparts, having been *very* much subjected to that kind of prejudice from both areas in the past.
I had wanted to be a Marine Biologist as a child and teen, but feel I was written off the maths approach too early by bad teaching which basically shut off the sciences to me. At the time, unless *really* smart, the assumption was that the only science little girls should be studying was 'domestic science'. I have never been really able to catch up with maths since, except when I went into nursing, two years as an 'auxiliary' then on to my training qualifying three years later as a 'Registered General Nurse' back in 1984, where I relearned arithmetic and calculus to a limited degree. Then again many years later while studying for a DipHE in Health Studies. I did that so I could bring myself up to speed with student nurse education at the time and graduated happily from the University of Plymouth back in 2006.
A DipHE might not sound much to anyone who has studied for and obtained a degree, but for someone like me who was basically written off as being 'thick' or not worth the educational effort at aged 6 onwards, it means so much as I had to find and fight my own way educationally in to nursing (after several resits to get the required 5 'O' levels, grade C or above at the time. I wasn't going to give up!) and then on in to adult education afterwards throughout my career, eventually becoming a clinical teacher, workshop leader for stress management, an NHS basic life support trainer and NVQ level 3 assessor in my own right. I hope I have always been encouraging to my students because unlike our dear Ben, I didn't get the support I felt I needed during my formative years. I know the bitter blow to one's self esteem and enthusiasm that can happen, after being told to 'try harder' and 'must be more confident', yet there was little encouragement from those around me to do so.
That was to be my pathway to a BSc in Nursing too, but sadly events overtook me health wise, so I never got the chance to finish the BSc. Ben gave up his Post grad studies because he felt he would not be able to 'lead' in anything, only be a follower. I have to disagree but then I do know what it is like when you have to wake up to the fact that your first love and ambition may not be your last, so to speak. However, I still find it a little sad that Ben felt he could not stay the course and get his doctorate, for all of his success and wonderful talent as an entertainer since then.
Getting back to the RI. It was a wonderful event, even if half way through it, jumping out of my skin and being mortified at the loud clatter of my stick slipping through the front panels we were sat behind, and landing on the floor followed by a SD card falling out of my handbag at the same time, which nearly caused me to have a seizure with poor Claire beside me having to stifle her hysterics! Despite that, Ben finished the session by that wonderful experiment of adding potassium iodide to hydrogen peroxide and causing a fountain of foamy mess! There followed a brief Q&A session afterwards which brought the session to a close. Then came the long, loud appreciative applause, well deserved in my opinion! After which all departed in to the reception area to queue to buy a copy of 'It's Not Rocket Science' and for autographs.
Ben had remained in the lecture theatre to chat to those around him for a bit. Claire and I joined in quietly as I thought that would be a better moment to quickly hand over our booklet of Caribbean based recipes to him. But I don't proof read so well, and will apologise for the numerous typos, inconsistencies in the thing, and discovering to my horror an hour or so before the event, that not all the pages are fully secured in to the comb bind! Never mind. Ben was really surprised and very pleased with his gift. Claire and I were delighted but happened next I did NOT expect! I had turned away to make our exit, when a Ben Miller shaped arm shot around my shoulders and two kisses were planted in quick succession on my left cheek! Wow! That totally threw me in a lovely way! I'll never wash my left cheek ever again! :D
I had blurted out, "did you get a picture of that!" but but poor Claire had frozen to the spot! Needless to say we were both in shock. but very, very happy that Ben liked our recipe book. I did recommend Chapter Two, the one with the cocktail recipes, plus since then Ben has stated he would be taking the booklet with him on his return to Guadeloupe, so there *might* be a bit of a party going on, who knows? Eventually it was time to move, so we went out and joined a *very* long queue of nearly everyone who attended wanting to buy the book and to have Ben's autograph. Luckily for us, a separate queue was formed for those only needing autographs. Since Claire and I had bought our copies of INRS in advance we quickly changed lanes so to speak! I asked her to take one of the four books I had on me as three other people wanted copies signing. That way the spoils could be divided up so as not to hog the man too much.
Ben graciously received us, Claire went first and we got a lovely picture of the two together. Ben then received a pile of books from me to sign (He's a very patient man!) and we briefly chatted again. He asked if Claire and I had known each other before Twitter, which we hadn't. He was also impressed I think, I had traveled up from Penzance to see him. Normally I can get a train from there to London in under 5 hours, but the route has changed so it took ages the day before. I have done the journey so often, it doesn't seem that long, however as I said to him, it took longer to come up from Penzance the evening before than it has taken me to fly to New York from Heathrow on occasions! But what I SHOULD have also said (sorry Ben!) was to point out that he had traveled much further only 48 hours or so before from Guadeloupe, via France. So you have my admiration for that, Mr Miller.
After this, Claire and I floated out of the reception area, down to the bar for a drink and a chat before we went our separate ways. It was a fantastic day and well worth every inch and minute of the journey! I have now had the privilege to meet two wonderfully kind, patient and openly generous people, one of which I hope will become a lifelong friend and the other of whom I will always admire, and hope to see in person again one day.
Thank you Clare, and THANK YOU Ben!
For my #BensBabes,
Heather a.ka. @Braintumourlady. XXXXXXX
Ben being a 'proper job' scientist!
Going through the book.
Ben with his copy of my (somewhat hastily) produced 'D.I.P' themed
recipe book on behalf of the #BensBabes at Twitter.com
My smile is much better than that! I was probably mumbling at
the time! Ben and misself after the talk.
With partner in crime and fellow #BensBabe, Claire.
Lovely woman!
*The Ritz Arts Community Centre Charitable Trust - It's an old 1936 art deco cimena which became a bingo hall until closed in 2005. Five of us have taken on the HUGE onerous task of cleaning up the place so it can be used as an arts and community centre and to be restored to its former glory, hopefully, as well. However, there is the slight matter of finding £300,000 to buy the bloody thing and then get a fund going for major structural restoration work! So if anyone out there who wants to help out.....*begs*!
Tuesday, 3 July 2012
Patience is a Virtue
Well, been to see the dok. Blood sugars are ok, but my CSR is up a bit
(for those who do not speak medical - it's a way of checking for
inflammation/infection).
Now to the important topic. Being shoved in to a proton linear particle accelerator for radiotherapy to my head. Two big things that are against it by now *IS* the fact that there will be side effects (yeah, got that bit) but these could lead to more permanent damage to my intellect and I think I'm brain damaged enough thank you. I have had some slight memory problems and my concentration levels are definitely down. But that could be a product of age, not sure.
There's still the opinion that my balance and dizziness is incidental to the tumour. I can't quite accept that but never mind. The 'RxTx' can only be applied once in most cases and there is definitely a case for leaving things to the last minute as there's no point causing damage before it is needed. So that does make a logical point.
I'm still ambivalent about it all, because I *don't* want to get worse, but if my balance issues are not all to do with Algy the tumour, I certainly would not want to make things worse by treatment which could leave me more damaged in the balance area, and as a result further reduce the quality of life that I do have. So I think God is telling me that the answer is to be patient and not try to put the donkey before the horse so to speak.
Which brings me on to another matter.
Work!
I have got a small NHS pension coming in that does cover most of the bills but with nowt left over for luxuries such as food etc. The small amount I have left from my lump sum has been supplementing this for a while and I have managed to get low rate disability in everything. But that will run out. My ESA is not being paid while they try to decide if I have got a magic 3rd income or not! Apparently they think I am still being paid sick pay from work. So for the nth time DWP!! I.WAS.BLOODY.WELL.DISMISSED.ON
I stated that ok, I might have to wait a few years for treatment, but in any event, it still means that I am basically unemployable, still have symptoms which will get worse over time no matter what in terms of treatment. I have a small pension, but only on the grounds I can no longer do my current job, but can apply for a higher rate if I am unable to work at all.. She started to tell me about the NHS bean counters who will have to study every penny put out in an already cash starved NHS. My response to that was that I have contributed full time to my NHS pension, can have a little bit more BUT need support from various clinicians if I apply for the higher level. I think that could at least get my butt out of the 'having to crawl to get any benefits' angle. But then I also sound like some lazy scrounger as well!
Given the fact I could wait years for treatment that will leave me affected in some way and that this will be in my later 50's, I have to accept no one in their right mind would employ me, ever! But there are still bills to pay, life to live and the prospect that at some point, an expensive 6 week treatment with possible long lasting side effects in a centre that at this time, is over 100 miles away with no accommodation thrown in!
So I guess it's time to start living life the best I can, while I can.
Algy the Tumour will be growing for a while longer yet!
Now to the important topic. Being shoved in to a proton linear particle accelerator for radiotherapy to my head. Two big things that are against it by now *IS* the fact that there will be side effects (yeah, got that bit) but these could lead to more permanent damage to my intellect and I think I'm brain damaged enough thank you. I have had some slight memory problems and my concentration levels are definitely down. But that could be a product of age, not sure.
There's still the opinion that my balance and dizziness is incidental to the tumour. I can't quite accept that but never mind. The 'RxTx' can only be applied once in most cases and there is definitely a case for leaving things to the last minute as there's no point causing damage before it is needed. So that does make a logical point.
I'm still ambivalent about it all, because I *don't* want to get worse, but if my balance issues are not all to do with Algy the tumour, I certainly would not want to make things worse by treatment which could leave me more damaged in the balance area, and as a result further reduce the quality of life that I do have. So I think God is telling me that the answer is to be patient and not try to put the donkey before the horse so to speak.
Which brings me on to another matter.
Work!
I have got a small NHS pension coming in that does cover most of the bills but with nowt left over for luxuries such as food etc. The small amount I have left from my lump sum has been supplementing this for a while and I have managed to get low rate disability in everything. But that will run out. My ESA is not being paid while they try to decide if I have got a magic 3rd income or not! Apparently they think I am still being paid sick pay from work. So for the nth time DWP!! I.WAS.BLOODY.WELL.DISMISSED.ON
I stated that ok, I might have to wait a few years for treatment, but in any event, it still means that I am basically unemployable, still have symptoms which will get worse over time no matter what in terms of treatment. I have a small pension, but only on the grounds I can no longer do my current job, but can apply for a higher rate if I am unable to work at all.. She started to tell me about the NHS bean counters who will have to study every penny put out in an already cash starved NHS. My response to that was that I have contributed full time to my NHS pension, can have a little bit more BUT need support from various clinicians if I apply for the higher level. I think that could at least get my butt out of the 'having to crawl to get any benefits' angle. But then I also sound like some lazy scrounger as well!
Given the fact I could wait years for treatment that will leave me affected in some way and that this will be in my later 50's, I have to accept no one in their right mind would employ me, ever! But there are still bills to pay, life to live and the prospect that at some point, an expensive 6 week treatment with possible long lasting side effects in a centre that at this time, is over 100 miles away with no accommodation thrown in!
So I guess it's time to start living life the best I can, while I can.
Algy the Tumour will be growing for a while longer yet!
Thursday, 28 June 2012
Post Mazey Day Gig depression!
Just to update on the goings on of last Saturday evening/Sunday morning. I did spend the day in bed on Sunday, sleeping and then headed out to the doks Monday for more blood tests. A seagull decided to 'bless' my head on the way home, and the evening I reacted badly to the fact I had put on another 1/2 lb at Slimming World. I went on twitter later that evening, during which I began to lose it a little, head spinning, becoming a tad irrational which are the usual sign for me that I've overdone things. I've spent the last 2 days sleeping it off as it were which means feeling utterly miserable, disorientated and generally unwell. This time I have done what my body (and Algy I suspect) has forced me to do and that's recharge the batteries. Dave, my ever wonderful husband, has been his usual understanding self and has wisely not made too much of a fuss as I am a total grumpy drawers when I get ill, usually wanting to be just left alone. I did do a little writing and emailing so I wouldn't be totally bed bound (not good for chest or lungs) and feel much better now, although if I don't get to bed soon, it'll start all over again.
Is this what is termed 'brain fatigue' by the way? Heard that expression a lot but do not entirely understand it.
Laters!
Is this what is termed 'brain fatigue' by the way? Heard that expression a lot but do not entirely understand it.
Laters!
Sunday, 24 June 2012
On Algy, Crowd Control and Bucket Lists.
"Who is Algy.." I hear you cry. Well, a few of us in the bt community often will personalise our tumours by giving them names. So let me introduce you to Algernon again as I did in my last post, or Algy for short, as the name of my benign tumour that does not act so benign at times. It's easier to call him Algy (why give a male personality to something growing inside a female skull? Dunno, I suppose the psyche boys will have an explanation for that) and not to keep saying 'brain tumour' all the time. It's shorthand and not so emotive.
Some are against this tactic as they feel that a tumour is a tumour and should stay that way and to personalise it is a bad thing. As far as I'm concerned it's my damned tumour and I'll do with it as I damn well please, including trying to have the bloody thing killed off if possible. But that will be down to bods at Derriford Plymouth NHS Trust who are trying to save cash left, right and centre, and as Algy isn't intent on killing me off *just* yet, they're not going to rush.
Learned another thing yesterday evening. I can no longer help out at my local passion (The Ritz, Penzance. A 1930's art deco cinema a few of us are trying to restore) with late night gigs. We have had a festival here in the last week called Golowan (Feast of St. John the Baptist) and had our main festival day yesterday called Mazey Day. Mazey Day is where we have parades and all sorts of shenanigans to cheer up the otherwise poor and oppressed people of Penzance. It's a great day actually with schools taking part in street parades with the most wonderful floats and props made entirely from bamboo and paper machè. This year's theme is of course The Olympics, and I suspect a little sympathy towards Greece who have found out the hard way of what it means to be part of a single European currency.
Anyway, I digress. At the Ritz we had an evening from a disco group called 'Love Riot' which went down very will with our local yoof, but sadly for me meant at about 2.50 am I collapsed while trying to sort out the crowd pressing at the counter where we have our cloak area. We were trying to get every one to step back so we could get the cloak area working more efficiently, but try saying that to sozzled young adults who are soley foccussed on getting their jackets back so they can pop out for a quick shag. It was getting hot and I was getting dizzy from yelling at everyone to back up. Algy had the perfect solution! My head started spinning, everything began to get very hot and weird, so down I went. I didn't lose consciousness as such, but as like the first time I collapsed, everything became very surreal and distant. Panic attack? No, just stress, tiredness and a brain tumour that is trying to get me to slow down a bit as I should definitely NOT be trying to deal with 600 pissed up yoof at 3am in the morning!
Sadly, I *am* disabled in the context of energy, clear thought, balance and have to recognise that I am putting myself at grave risk of falls etc by still allowing myself to be in situations such as the above. After all that's why I've had to stop work in the first place. But a part of me just doesn't want to let go yet. doesn't want to give in. A part of me still needs to be needed, to feel useful, to have a piece of the action, not to give in to 'Granny Disney' especially as a) I am not a grandmother, only the mad childless aunt to my brother's fabulous teen children and b) I'm only 51 for God's sake and if Algy isn't intent on killing me off just yet, what am I then to do? I love Facebook, Twitter (hi to anyone reading this!) but that cannot be the sole activity I do for the rest of my life, surely!
Look, I AM going up to London to see Ben Miller give a talk at the RI and I AM going to Canada in September to be with friends for a week, and I AM going to have my picture taken with the legendary William Shatner at an expensive Star Trek event in October, by then in some terms my life will be complete and can strike some stuff off my bucket list.
Yes, I DO have a bucket list, everyone should have one! All I have left to do is to be able to stand outside the Iolani Palace in Honolulu holding a sign over my head with 'Book 'em Danno' on it as a tribute to the original stars of Hawaii Five-O. To walk the tour of Hobbits in New Zealand, to get a Bachelor's degree in SOMETHING, to attend the temple in Salt Lake City and to give Richard Dawkins a smack upside the head and tell him to learn something called TOLERANCE. He's giving my atheist friends a bad name with his arrogant, bigoted, pompous idiocy! Well, I might not manage the last one, but the previous four I will find a way to do or die trying. But what I never want to do is GIVE UP.
I have seen it so many times, the most cruel agonizing death for those who have become so miserable, so depressed and for whom life no longer has meaning. They have no energy or will to live and who are just sitting waiting to die or withdraw in to a world of dependency and fear of the outside world because they can no longer function and have been so overwhelmed. I don't want to be like that. Ever. But I do have to realise, again, I can no longer do what I used or want to do. All because Algy and I suspect, other conditions which will make me slow up, to continue to depend on a walking stick for balance etc and to take care.
I want to be like the ping pong eyed guy who used to dispense his wisdom and experience to the young 'grasshopper' in the Kung Fu series years ago. I want to be the wise woman to will be there to lend a shoulder for others, to encourage those around me, to give support. I want to be a positive force for good. But how can I do that, if I still haven't learned to take care of myself first? It's the age old dilemma of the terminally work afflicted.
We'll see how things come along over this next little while. Oh, by the way I'm off to the dok's in the morning as my blood glucose levels are too high and need a fasting blood sugar check, which may also not be helping.
Joy. >:(
Update. Found this article via FB bt community. I should take more notice of this! http://tinyurl.com/6ve9u5b
Some are against this tactic as they feel that a tumour is a tumour and should stay that way and to personalise it is a bad thing. As far as I'm concerned it's my damned tumour and I'll do with it as I damn well please, including trying to have the bloody thing killed off if possible. But that will be down to bods at Derriford Plymouth NHS Trust who are trying to save cash left, right and centre, and as Algy isn't intent on killing me off *just* yet, they're not going to rush.
Learned another thing yesterday evening. I can no longer help out at my local passion (The Ritz, Penzance. A 1930's art deco cinema a few of us are trying to restore) with late night gigs. We have had a festival here in the last week called Golowan (Feast of St. John the Baptist) and had our main festival day yesterday called Mazey Day. Mazey Day is where we have parades and all sorts of shenanigans to cheer up the otherwise poor and oppressed people of Penzance. It's a great day actually with schools taking part in street parades with the most wonderful floats and props made entirely from bamboo and paper machè. This year's theme is of course The Olympics, and I suspect a little sympathy towards Greece who have found out the hard way of what it means to be part of a single European currency.
Anyway, I digress. At the Ritz we had an evening from a disco group called 'Love Riot' which went down very will with our local yoof, but sadly for me meant at about 2.50 am I collapsed while trying to sort out the crowd pressing at the counter where we have our cloak area. We were trying to get every one to step back so we could get the cloak area working more efficiently, but try saying that to sozzled young adults who are soley foccussed on getting their jackets back so they can pop out for a quick shag. It was getting hot and I was getting dizzy from yelling at everyone to back up. Algy had the perfect solution! My head started spinning, everything began to get very hot and weird, so down I went. I didn't lose consciousness as such, but as like the first time I collapsed, everything became very surreal and distant. Panic attack? No, just stress, tiredness and a brain tumour that is trying to get me to slow down a bit as I should definitely NOT be trying to deal with 600 pissed up yoof at 3am in the morning!
Sadly, I *am* disabled in the context of energy, clear thought, balance and have to recognise that I am putting myself at grave risk of falls etc by still allowing myself to be in situations such as the above. After all that's why I've had to stop work in the first place. But a part of me just doesn't want to let go yet. doesn't want to give in. A part of me still needs to be needed, to feel useful, to have a piece of the action, not to give in to 'Granny Disney' especially as a) I am not a grandmother, only the mad childless aunt to my brother's fabulous teen children and b) I'm only 51 for God's sake and if Algy isn't intent on killing me off just yet, what am I then to do? I love Facebook, Twitter (hi to anyone reading this!) but that cannot be the sole activity I do for the rest of my life, surely!
Look, I AM going up to London to see Ben Miller give a talk at the RI and I AM going to Canada in September to be with friends for a week, and I AM going to have my picture taken with the legendary William Shatner at an expensive Star Trek event in October, by then in some terms my life will be complete and can strike some stuff off my bucket list.
Yes, I DO have a bucket list, everyone should have one! All I have left to do is to be able to stand outside the Iolani Palace in Honolulu holding a sign over my head with 'Book 'em Danno' on it as a tribute to the original stars of Hawaii Five-O. To walk the tour of Hobbits in New Zealand, to get a Bachelor's degree in SOMETHING, to attend the temple in Salt Lake City and to give Richard Dawkins a smack upside the head and tell him to learn something called TOLERANCE. He's giving my atheist friends a bad name with his arrogant, bigoted, pompous idiocy! Well, I might not manage the last one, but the previous four I will find a way to do or die trying. But what I never want to do is GIVE UP.
I have seen it so many times, the most cruel agonizing death for those who have become so miserable, so depressed and for whom life no longer has meaning. They have no energy or will to live and who are just sitting waiting to die or withdraw in to a world of dependency and fear of the outside world because they can no longer function and have been so overwhelmed. I don't want to be like that. Ever. But I do have to realise, again, I can no longer do what I used or want to do. All because Algy and I suspect, other conditions which will make me slow up, to continue to depend on a walking stick for balance etc and to take care.
I want to be like the ping pong eyed guy who used to dispense his wisdom and experience to the young 'grasshopper' in the Kung Fu series years ago. I want to be the wise woman to will be there to lend a shoulder for others, to encourage those around me, to give support. I want to be a positive force for good. But how can I do that, if I still haven't learned to take care of myself first? It's the age old dilemma of the terminally work afflicted.
We'll see how things come along over this next little while. Oh, by the way I'm off to the dok's in the morning as my blood glucose levels are too high and need a fasting blood sugar check, which may also not be helping.
Joy. >:(
Update. Found this article via FB bt community. I should take more notice of this! http://tinyurl.com/6ve9u5b
Thursday, 7 June 2012
Misery, Oh Misery! :(
The slightest thing is setting me off of late. Not sure if its being post menopausal or Algernon (I've decided to call my meningioma that!) a.k.a 'Algy' is having an effect. Sad to hear that Sheryl Crowe has been diagnosed with a meningioma but even sadder that, I guess in order to reassure her public, the seriousness of which is being played down. Yes, meningiomas are usually benign but NO they are not something to be ignored! Some will be symptomless and kept under surveillance, not requiring immediate treatment as they are either very small or not causing too much damage. But most do grow and often it will depend on WHERE in the brain they expand as well as the very fact you have one. Now ok, we don't want to go around giving the impression that as soon as the word 'brain tumour' is mentioned we should be booking our plot in the local cemetery, or looking to invest in a floral tribute, but the sad fact is many have their lives altered or cut short by the presence of a brain tumour, especially if of a higher grade. At best, most can be quite disabling, having a terrible impact on people's lives until treated or otherwise.
I learned in nursing school that the skull is not expandable, that there is NO ROOM for extras, indeed I have seen many a time when the brain has been compressed by bleeds, bruising etc the damage, some of it permanent/potentially fatal if prompt treatment is not applied. Ok, that's a dire emergency I know and have been present when bore holes have been drilled into someone's skull to release the pressure of a bleeding artery so the cerebrum wouldn't be squished in to grey jelly, but have also seen what happens when an undiagnosed or untreated brain tumour can suddenly have a spurt, crush a very sensitive part of the brain or worse!
Most brain tumours are secondary to other cancers - about 60%, where the cells have metastasized from other areas of the body but about 40% are primary tumours. Meningiomas are the most common although I was told that in one sense mine was fairly rare for some reason - possibly due to it's location? I personally think brain tumours are more common than people realise or maybe it's because I have gotten so many in the 'BT Community' it seems more. Most are survivors but nearly all have paid a dear price in one way or another for their tumours. Jobs have been lost through long term illness as bt's especially in the UK can take a long time to diagnose, treat and recover from fully, if you're lucky. Damage can be permanent, not everyone recovers to full health and usually have to adapt their lives. But in part what I am upset about today is that there are those, who because they don't crawl about on 1 finger and who look 'normal' are being vilified, their children being bullied because there's the perception they are scroungers, when they are not.
Basically I am scared. I am scared of becoming an object of derision because I don't look 'ill enough' although I do use a walking stick so do not have to crawl. I am sick and tired of having to jump through so many hoops to PROVE that I am ill and have lost my job and will never be employed again, to JobCentrePlus and the DWP, of whom you dare not show any positive effort in your life or else they suddenly decide you can work down a coal mine or something. I am SICK TO DEATH of the money spinning contracts between Govt and private companies which have produced such gems as ATOS, whose mandate is NOT to properly assess the needs of applicants for benefits but to work at ny angle to avoid payouts etc.
I am sick to death of trying to be positive in a world that will only examine those who are ill with suspicion and an indifferent government who will ignore the fact I and so many others have worked hard, paid their taxes and NI's over the years only to be slapped in the face when sadly, their turn has come to need help. Luckily, in Penzance where I live, I have had nothing but wonderful support, but then I am not shy about Algy and indeed as you will find in the previous posts here, have written some articles for our local newspaper 'The Cornishman'. Yet I do not want this to turn in to a 'pity party' either. But sadly for a lot of bt sufferers and the chronically sick/disabled in general that's what has to be done, to crawl, beg and grovel so one can be awarded an amount per month that would not get an average family a day pass in to Alton Towers!
Another big beef of mine. Brain tumours are not glamorous, not trendy and seem to be ignored by the wider celebrity world, unless you're Tom Daley the European and World champion diver whose father died of a Glioblastoma Multiform at aged 40, Russell Watson who survived a pituitary tumour TWICE and both of whom have been very supportive. No one seems to want to know which is sad. Brain cancer and tumours are no respecter of age and needs to be highlighted so much. The technology IS there to diagnose and hopefully treat quickly, but the willingness to alert the public to the symptoms, options, facts etc is missing and its not for the lack of effort from bt sufferers to spread the word either. Mary Tyler-Moore and Sheryl Crowe are faced with a condition which is pretty serious but luckily in both cases is and has been treatable, but although the message needs to be positive at times, what it does NOT need is be played down for the sake of 'reassurance'.
That is my reality anyway. We need more help from the celebrity world, corporations etc but are just not getting it.
That's one of the many reasons I feel so depressed today. So for those reading this, please be willing to spread the word! :We need your help badly! :(
I learned in nursing school that the skull is not expandable, that there is NO ROOM for extras, indeed I have seen many a time when the brain has been compressed by bleeds, bruising etc the damage, some of it permanent/potentially fatal if prompt treatment is not applied. Ok, that's a dire emergency I know and have been present when bore holes have been drilled into someone's skull to release the pressure of a bleeding artery so the cerebrum wouldn't be squished in to grey jelly, but have also seen what happens when an undiagnosed or untreated brain tumour can suddenly have a spurt, crush a very sensitive part of the brain or worse!
Most brain tumours are secondary to other cancers - about 60%, where the cells have metastasized from other areas of the body but about 40% are primary tumours. Meningiomas are the most common although I was told that in one sense mine was fairly rare for some reason - possibly due to it's location? I personally think brain tumours are more common than people realise or maybe it's because I have gotten so many in the 'BT Community' it seems more. Most are survivors but nearly all have paid a dear price in one way or another for their tumours. Jobs have been lost through long term illness as bt's especially in the UK can take a long time to diagnose, treat and recover from fully, if you're lucky. Damage can be permanent, not everyone recovers to full health and usually have to adapt their lives. But in part what I am upset about today is that there are those, who because they don't crawl about on 1 finger and who look 'normal' are being vilified, their children being bullied because there's the perception they are scroungers, when they are not.
Basically I am scared. I am scared of becoming an object of derision because I don't look 'ill enough' although I do use a walking stick so do not have to crawl. I am sick and tired of having to jump through so many hoops to PROVE that I am ill and have lost my job and will never be employed again, to JobCentrePlus and the DWP, of whom you dare not show any positive effort in your life or else they suddenly decide you can work down a coal mine or something. I am SICK TO DEATH of the money spinning contracts between Govt and private companies which have produced such gems as ATOS, whose mandate is NOT to properly assess the needs of applicants for benefits but to work at ny angle to avoid payouts etc.
I am sick to death of trying to be positive in a world that will only examine those who are ill with suspicion and an indifferent government who will ignore the fact I and so many others have worked hard, paid their taxes and NI's over the years only to be slapped in the face when sadly, their turn has come to need help. Luckily, in Penzance where I live, I have had nothing but wonderful support, but then I am not shy about Algy and indeed as you will find in the previous posts here, have written some articles for our local newspaper 'The Cornishman'. Yet I do not want this to turn in to a 'pity party' either. But sadly for a lot of bt sufferers and the chronically sick/disabled in general that's what has to be done, to crawl, beg and grovel so one can be awarded an amount per month that would not get an average family a day pass in to Alton Towers!
Another big beef of mine. Brain tumours are not glamorous, not trendy and seem to be ignored by the wider celebrity world, unless you're Tom Daley the European and World champion diver whose father died of a Glioblastoma Multiform at aged 40, Russell Watson who survived a pituitary tumour TWICE and both of whom have been very supportive. No one seems to want to know which is sad. Brain cancer and tumours are no respecter of age and needs to be highlighted so much. The technology IS there to diagnose and hopefully treat quickly, but the willingness to alert the public to the symptoms, options, facts etc is missing and its not for the lack of effort from bt sufferers to spread the word either. Mary Tyler-Moore and Sheryl Crowe are faced with a condition which is pretty serious but luckily in both cases is and has been treatable, but although the message needs to be positive at times, what it does NOT need is be played down for the sake of 'reassurance'.
That is my reality anyway. We need more help from the celebrity world, corporations etc but are just not getting it.
That's one of the many reasons I feel so depressed today. So for those reading this, please be willing to spread the word! :We need your help badly! :(
Friday, 11 May 2012
Bloody DWP and HM Revenue and Customs!
MAJOR gripe - our old friend, the DWP! Got a call from my advocate this morning that the DWP is bringing my contributions ESA to an end (no surprise there then), and that they had already assessed me as not eligible to receive Income related ESA. Well, this is news to me as I haven't seen or been assessed by ANYONE! She's given them a blasting stating I will NOT be attending any ATOS medicals due to their incompetence as well as it would be too traumatic. Either they do a home assessment or scrap the idea all together! She's waiting for a call back. BTW, the advocate is a friend and is helping me as a favour NOT because I am so loaded I could afford to pay for one!*
But my biggest gripe is with the tax office on why it is they've decided to drop my tax allowance down to 436T (T meaning they're not sure of my 'status') from the personal allowance of £8105 to £4360! I receive a works related pension on the grounds of ill health, but am not sure if they would also deduct the tax payable on my ESA, which I thought would have been taken at source. Either way, I'll be stuffed by about £400 a month. We'll still have our house as my pension pays the mortgage, and we can have running water. But that's about it. Looks like we'll have to forgo little luxuries such as lighting, heat, food etc. Hubby earns less than £5000 a year which also helps to pay the bills such as insurances etc but between us we'll be barely able to scrape through I think. 32 years full time hard graft then the loss of a career through no fault of my own and now this. I wonder if they are taking my pension as being an 'employment wage'? Did try to get through this morning but of course everyone is either on strike or going slow due to the public sector row over yes you've guessed it, pensions!
...anyone out there want to employ a doddery old thing with vertigo, chronic fatigue, seizures and mobility problems and an actively (albeit slowly) growing tumour?
Let me know....!
*Since this was written I have my ESA still at contributions as I know have a small NHS pension, but in the support group until 2015. Now having to apply again for DLA of which I was getting low rate with both mobility and care.
But my biggest gripe is with the tax office on why it is they've decided to drop my tax allowance down to 436T (T meaning they're not sure of my 'status') from the personal allowance of £8105 to £4360! I receive a works related pension on the grounds of ill health, but am not sure if they would also deduct the tax payable on my ESA, which I thought would have been taken at source. Either way, I'll be stuffed by about £400 a month. We'll still have our house as my pension pays the mortgage, and we can have running water. But that's about it. Looks like we'll have to forgo little luxuries such as lighting, heat, food etc. Hubby earns less than £5000 a year which also helps to pay the bills such as insurances etc but between us we'll be barely able to scrape through I think. 32 years full time hard graft then the loss of a career through no fault of my own and now this. I wonder if they are taking my pension as being an 'employment wage'? Did try to get through this morning but of course everyone is either on strike or going slow due to the public sector row over yes you've guessed it, pensions!
...anyone out there want to employ a doddery old thing with vertigo, chronic fatigue, seizures and mobility problems and an actively (albeit slowly) growing tumour?
Let me know....!
*Since this was written I have my ESA still at contributions as I know have a small NHS pension, but in the support group until 2015. Now having to apply again for DLA of which I was getting low rate with both mobility and care.
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