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! :(

2 comments:

  1. Hi there! I will be looking forward to visit your page again and for your other posts as well. Thank you for sharing your thoughts about meningioma. I am glad to stop by your site and know more about meningioma. Keep it up! This is a good read. You have such an interesting and informative page.
    Ninety-two percent of meningiomas are benign, with 8% being either atypical or malignant.
    Approximately 96% of meningiomas occur within the skull, with the remaining 4% involving the spinal column. Meningiomas are the most common type of primary brain tumor, accounting for 34.4% of all such tumors. A primary brain tumor originates from the brain, spinal cord or associated tissues (called the central nervous system or CNS), while a secondary brain tumor arises from cancerous cells that have spread (metastasized) to the CNS from elsewhere in the body.

    meningioma

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    1. Mark,

      Thank you for your reply and the figures! Mine is growing up in the cerebellar pontine angle, has impacted the pons causing a 1.5 cm displacement and has also started to impact on the temporal lobe. The tumour itself if I remember rightly is about 2.5 cm and slowly expanding. I'm not sure why my NS said what I had was 'quite rare' or maybe I misheard what he said. I do know the location is very awkward to get at hence the reluctance to either perform radiotherapy and surgery. I have another MRI scan due in the early part of next yearso will see then.

      Heatherxx

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