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!
Thursday 28 June 2012
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! :(
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