Differences :Pituitary Tumours and other brain tumours !
A fundamental difference between a pituitary brain tumour and a tumour in other parts of
the body is the effect it can have on the mind and interaction with other people.
This is the MAIN issue Tumour patients have when TRYING to explain to others the impact on our lives !
I am mainly trying to explain about Pituitary Tumours - but - Im guessing this can also be attributed to other Brain Tumours. ( I am NOT medically trained and just go by experience )
Pituitary Brain tumours frequently lead to the loss of the characteristics and faculties that
make us who we are as individuals: personality, memories, cognition and the ability
to communicate with others. Yet Non Medical - AND THE MEDICAL PROFESSION think and indicate frequently - that 'it's in our heads !! - Well - YES ! - it is all in our heads !! You are right there !! BUT - It is NOT PUT ON - or over emphasised !
Brain tumours are the only type of tumour that directly impacts on personality, behaviour, cognition and communication — ALL AT ONCE !
These are essential features of an individual's identity, and they get taken away. VERY QUICKLY.
People I have actually spoken with report experiencing personality changes, such as depression, chronic feelings of anger, extreme heightened emotions and disinhibition.
I have actually likened my own personality fluctuations to the Jekyll and Hyde character ; A friend has said she felt as though part of her brain had ‘been deleted’. Such experiences are not what might
be expected as a natural psychological reaction to the distress of a potentially life-threatening
illness; they arise from physical changes to the brain caused by the tumour and these don’t improve with emotional adjustment to the condition. How come I can understand this - and other Patients 'get it ' - while the medical field and CLOSE friends and family seem to be at a loss of understanding !
When we speak in terms of the loss of part of ourselves, we are NOT talking in the extreme or being overly dramatic - that loss is very real.
The palpability of the struggle to concentrate, and the cognitive problems are all too absolute.
Myself and other pituitary brain tumour patients have described difficulty remembering what we
are trying to say, actually during conversations, yet - we often are able to write the conversation down in full.
Another friend agrees it is so very irritating forgetting ‘even the simplest words’, undermining her motivation to speak at all.
Losing the ability to speak ( and I have been told many times by the medical profession )- Apparently my illness will not cause issues such as the speech slurring and the forgetting of words that frequently happens - yet - the only common denominator - the tumours !
Many people on forums and other chat rooms for Pituitary Tumours share the same symptoms - they report having speech problems as a result of their brain tumour. Differing People told me of the embarrassment and anxiety that comes from living with aphasia, or these speech disorders. Thankfully - I can see the funny side - and laugh - Laugh or otherwise you'd cry - at the moment - i seem to say 'FORWARD' and 'CASTLES' in place of many words - sometimes in context and sometimes not - !!! All very bizarre !!
I try so hard to explain to people that i can never say what i mean - : ‘I am never quick enough and can often throw in the wrong word, which is totally irrelevant in a sentence’ often this is funny - especially when the word is totally obscure - but sometimes i may throw in a swear word - Tourettes style - and this can sometimes raise eye brows ( Not that i'm a nun ! - I do swear - but - generally i wouldn't use words i can sometimes throw into a sentence when i'm ill ! ) ! . I often have the feeling that i'm stupid, and hate the thought that other would pity me, I DON'T WANT ANYONE'S PITY ! But - i really don't want people to think i am ‘thick’ or ‘drunk’. Research data shows that the impact of such difficulties is considerable, both in terms of the practicalities of communication and the confidence and self-esteem of any individual. At least i know i'm not alone there then !
Many Pituitary Patients take YEARS to be diagnosed, and after years of experiencing symptoms that were wrongly attributed to mental illness finally i got the correct conclusion. Many Pit Patients have the same experience, “My brain tumour completely changed my personality. I was misdiagnosed with mental health problems at a young age, and was given a diagnosis of everything from post-traumatic stress to postnatal depression. I also had a very long history of bipolar disorder. When I
was diagnosed with the tumour I was scared but relieved. I’m probably one of the only
people who was chuffed to learn there was a tumour in my head !! - i found this quote on the internet - but in fact - the entire sentence could have been written about me ! - and i'm guessing - many many patients are now thinking the same thing !
When i do a shout out on particular Pit Pages - the amount of people who report they experience EXTREME fatigue syndrome and over half state that they severely affected by it. The impact of
fatigue on a person’s capacity to cope with daily life can be devastating. Unlike an acute sleep deficit, the exhaustion caused by a brain tumour cannot be eliminated with an increase in sleep, and the depletion in energy levels can limit a person’s ability even to deal with basic, routine tasks. Sometimes i have no energy whatsoever, this is NOT being lazy or because of boredom or the need for motivation - I am the most motivated and positive person i can think of ! Some days i really just need to ‘stay in bed all day’ not because i cant be bothered = but because i cant move without searing pain and the Confusion under the extreme exhaustion, usually combined with a strong feeling of physical tiredness, becomes so bad that i can no longer think or speak properly - on top of not being able to think or speak properly ! . Feelings of irritability or inability to cope may also be experienced - heightened with the same !!!!
Losing control of your body
I have also been severely affected with mobility problems,
whilst 1 in 3 reported poor mobility and nearly
40% cited balance problems. People are
rendered bed-bound or wheelchair-dependent
by their tumour, at the moment i am FIGHTING - and i will carry on fighting - but i wont lie and say its not tough ; I try everything to 'look' normal - for myself as well as whomever i am with - BUT - Often i can only walk if using a trolley - or holding onto someone - thing - Many others have told me they use a walking aid require assistance to leave the house and get about in public.
I'm also always falling over - Mainly due to lack of concentration - or giddiness - i won't lie and say this does not hurt - but - thankfully I take this in my stride - I can still get up and i find myself funny - but - others i'm sure must be living in fear of falling, saying that, falls are unpredictable, many patients must be worried about people thinking they are drunk when they struggle, stumble or fall in public.
Feeling ‘imprisoned by pain’ - So many people think that a Brain Tumour Pain is limited to head aches - ohhhh - it goes so much further than that !
I, and most of the friends and 'pit sufferers' I have spoken too live with constant pain. The degree of pain and incapacity endured as a result of chronic headaches can be completely debilitating, confining people to bed to ‘sleep it off’ or to recover from drowsiness caused by strong pain relief. One friend described constant head pain: ‘I go to bed with a headache and wake with one’; another reported having migraine type symptoms ‘24/7’.
Losing sight
Sight is often affected as a result of the tumour. I have had a Loss of peripheral vision and my depth perception is causing me massive problems - Even though i am now no longer driving - Whom ever is driving has me jumping and swearing and commenting on EVERYTHING making THEM a jibbering wreak as well as me ! The loss of sight causes such anxiousness while in the car that just the mere fact of cars on the road is an issue for me !
OK - so falling is one thing - but there is also the added 'stress' of knocking things over and the impairment of the manual dexterity required to safely use kitchen implements or tools. Sight loss and my lack of concentration has also meant that I am unable to read - a past time that i used to love - I also have issues reading the 'tv' to put on a programme - and these days with all the different remotes - WOW - so many things to remember - and - what is the issue there .... Concentration and Thought Process !! so - Often i am found painting !!!!!
Becoming reliant on others
Most people with brain tumours experience
some degree of increased dependence on
others, this has been my BUG BEAR . I have massive Difficulty with domestic chores and as already stated - I have been advised not to drive - and as i can't walk anywhere - that makes me house bound ! - NOT THROUGH WANT ! Thankfully I love my home - but it does make me feel trapped
Losing your dignity
Lots of people on my forums have said that they have had or are having difficulty
with basic aspects of their personal care, such as washing themselves and getting dressed. For me this is a major issue and i often fall in the shower and the pain caused just by putting on trousers etc is excruciating - but - i'm stubborn - and i carry on !
One lady said she ‘hated the indignity’ of this and described assistance with washing as being ‘bathed like a baby’. I won't ask for help in this area - ... That's just a 'flat out refusal i have !! Thankfully - at the moment - I can cope ...
I often have the feeling that i am ‘a burden to others, and I am unloved - yet mainly unlovable'
I did not want a relationship as it was easier to be alone because ‘no-one else should be burdened with this’. But - Since meeting the gorgeous man i am now with - Maybe this has changed - Time will tell ...
I would say lastly that I feel my brain tumour has had a negative impact on my friendships, Before my lovely fella came alone - I felt severely socially isolated. I have my mother take me out but really that's it -
Yes i have LOTS of people say - " we'll take you out " - ... " When can you be free " - but - at the end of the day - the day never comes - so - everyone thinks everyone else is there for me - yet - in fact - there is no-one !! But - I Understand that everyone has there own lives to lead -
I have found that many friends cannot cope with my new circumstances, especially if they knew me before the Tumour came along - these people tend to behave differently around me now, or they withdraw entirely.
Thankfully i have made new friends who are very understanding - and only knew me when i was ill - so this is a good thing - but - this also requires the mobility, energy, and the cognitive and communicative dexterity that a brain tumour impairs. It also does not help that sometimes i feel awkward in social situations - and yet - i don't know when this feeling will come along !!
This is as far as i am going today with this blog - i'm a tad worn out and for some time scale for you - it has taken me 12 hours and 33 minutes to write this piece !!
Is that a lot -? - I don't know - but all i do know is i have written it while zoned out in 'another dimension' !!!! Is THAT weird ?? - I don't know that either !! lol .... Now off to feed the Unicorns ! xx
the body is the effect it can have on the mind and interaction with other people.
This is the MAIN issue Tumour patients have when TRYING to explain to others the impact on our lives !
Pituitary Brain tumours frequently lead to the loss of the characteristics and faculties that
make us who we are as individuals: personality, memories, cognition and the ability
to communicate with others. Yet Non Medical - AND THE MEDICAL PROFESSION think and indicate frequently - that 'it's in our heads !! - Well - YES ! - it is all in our heads !! You are right there !! BUT - It is NOT PUT ON - or over emphasised !
Brain tumours are the only type of tumour that directly impacts on personality, behaviour, cognition and communication — ALL AT ONCE !
These are essential features of an individual's identity, and they get taken away. VERY QUICKLY.
People I have actually spoken with report experiencing personality changes, such as depression, chronic feelings of anger, extreme heightened emotions and disinhibition.
I have actually likened my own personality fluctuations to the Jekyll and Hyde character ; A friend has said she felt as though part of her brain had ‘been deleted’. Such experiences are not what might
be expected as a natural psychological reaction to the distress of a potentially life-threatening
illness; they arise from physical changes to the brain caused by the tumour and these don’t improve with emotional adjustment to the condition. How come I can understand this - and other Patients 'get it ' - while the medical field and CLOSE friends and family seem to be at a loss of understanding !
When we speak in terms of the loss of part of ourselves, we are NOT talking in the extreme or being overly dramatic - that loss is very real.
The palpability of the struggle to concentrate, and the cognitive problems are all too absolute.
Myself and other pituitary brain tumour patients have described difficulty remembering what we
are trying to say, actually during conversations, yet - we often are able to write the conversation down in full.
Another friend agrees it is so very irritating forgetting ‘even the simplest words’, undermining her motivation to speak at all.
Poor concentration, an inability to multitask or process information quickly and memory problems all impact negatively on the ability to retain control of one’s own life. One male friend has told me - very begrudgingly - that he forgets his medication so often that his wife has had to take up the task of managing it - he is unable to manage his medication himself because he felt he could no longer trust himself with the task, I can totally understand that issue and frequently forget my meds - but - Being so stubborn - i wont give up control - even if it does mean i become ill.
Losing the ability to speak ( and I have been told many times by the medical profession )- Apparently my illness will not cause issues such as the speech slurring and the forgetting of words that frequently happens - yet - the only common denominator - the tumours !
Many people on forums and other chat rooms for Pituitary Tumours share the same symptoms - they report having speech problems as a result of their brain tumour. Differing People told me of the embarrassment and anxiety that comes from living with aphasia, or these speech disorders. Thankfully - I can see the funny side - and laugh - Laugh or otherwise you'd cry - at the moment - i seem to say 'FORWARD' and 'CASTLES' in place of many words - sometimes in context and sometimes not - !!! All very bizarre !!
I try so hard to explain to people that i can never say what i mean - : ‘I am never quick enough and can often throw in the wrong word, which is totally irrelevant in a sentence’ often this is funny - especially when the word is totally obscure - but sometimes i may throw in a swear word - Tourettes style - and this can sometimes raise eye brows ( Not that i'm a nun ! - I do swear - but - generally i wouldn't use words i can sometimes throw into a sentence when i'm ill ! ) ! . I often have the feeling that i'm stupid, and hate the thought that other would pity me, I DON'T WANT ANYONE'S PITY ! But - i really don't want people to think i am ‘thick’ or ‘drunk’. Research data shows that the impact of such difficulties is considerable, both in terms of the practicalities of communication and the confidence and self-esteem of any individual. At least i know i'm not alone there then !
Many Pituitary Patients take YEARS to be diagnosed, and after years of experiencing symptoms that were wrongly attributed to mental illness finally i got the correct conclusion. Many Pit Patients have the same experience, “My brain tumour completely changed my personality. I was misdiagnosed with mental health problems at a young age, and was given a diagnosis of everything from post-traumatic stress to postnatal depression. I also had a very long history of bipolar disorder. When I
was diagnosed with the tumour I was scared but relieved. I’m probably one of the only
people who was chuffed to learn there was a tumour in my head !! - i found this quote on the internet - but in fact - the entire sentence could have been written about me ! - and i'm guessing - many many patients are now thinking the same thing !
When i do a shout out on particular Pit Pages - the amount of people who report they experience EXTREME fatigue syndrome and over half state that they severely affected by it. The impact of
fatigue on a person’s capacity to cope with daily life can be devastating. Unlike an acute sleep deficit, the exhaustion caused by a brain tumour cannot be eliminated with an increase in sleep, and the depletion in energy levels can limit a person’s ability even to deal with basic, routine tasks. Sometimes i have no energy whatsoever, this is NOT being lazy or because of boredom or the need for motivation - I am the most motivated and positive person i can think of ! Some days i really just need to ‘stay in bed all day’ not because i cant be bothered = but because i cant move without searing pain and the Confusion under the extreme exhaustion, usually combined with a strong feeling of physical tiredness, becomes so bad that i can no longer think or speak properly - on top of not being able to think or speak properly ! . Feelings of irritability or inability to cope may also be experienced - heightened with the same !!!!
Losing control of your body
I have also been severely affected with mobility problems,
whilst 1 in 3 reported poor mobility and nearly
40% cited balance problems. People are
rendered bed-bound or wheelchair-dependent
by their tumour, at the moment i am FIGHTING - and i will carry on fighting - but i wont lie and say its not tough ; I try everything to 'look' normal - for myself as well as whomever i am with - BUT - Often i can only walk if using a trolley - or holding onto someone - thing - Many others have told me they use a walking aid require assistance to leave the house and get about in public.
I'm also always falling over - Mainly due to lack of concentration - or giddiness - i won't lie and say this does not hurt - but - thankfully I take this in my stride - I can still get up and i find myself funny - but - others i'm sure must be living in fear of falling, saying that, falls are unpredictable, many patients must be worried about people thinking they are drunk when they struggle, stumble or fall in public.
Feeling ‘imprisoned by pain’ - So many people think that a Brain Tumour Pain is limited to head aches - ohhhh - it goes so much further than that !
I, and most of the friends and 'pit sufferers' I have spoken too live with constant pain. The degree of pain and incapacity endured as a result of chronic headaches can be completely debilitating, confining people to bed to ‘sleep it off’ or to recover from drowsiness caused by strong pain relief. One friend described constant head pain: ‘I go to bed with a headache and wake with one’; another reported having migraine type symptoms ‘24/7’.
Losing sight
Sight is often affected as a result of the tumour. I have had a Loss of peripheral vision and my depth perception is causing me massive problems - Even though i am now no longer driving - Whom ever is driving has me jumping and swearing and commenting on EVERYTHING making THEM a jibbering wreak as well as me ! The loss of sight causes such anxiousness while in the car that just the mere fact of cars on the road is an issue for me !
OK - so falling is one thing - but there is also the added 'stress' of knocking things over and the impairment of the manual dexterity required to safely use kitchen implements or tools. Sight loss and my lack of concentration has also meant that I am unable to read - a past time that i used to love - I also have issues reading the 'tv' to put on a programme - and these days with all the different remotes - WOW - so many things to remember - and - what is the issue there .... Concentration and Thought Process !! so - Often i am found painting !!!!!
Becoming reliant on others
Most people with brain tumours experience
some degree of increased dependence on
others, this has been my BUG BEAR . I have massive Difficulty with domestic chores and as already stated - I have been advised not to drive - and as i can't walk anywhere - that makes me house bound ! - NOT THROUGH WANT ! Thankfully I love my home - but it does make me feel trapped
Losing your dignity
Lots of people on my forums have said that they have had or are having difficulty
with basic aspects of their personal care, such as washing themselves and getting dressed. For me this is a major issue and i often fall in the shower and the pain caused just by putting on trousers etc is excruciating - but - i'm stubborn - and i carry on !
One lady said she ‘hated the indignity’ of this and described assistance with washing as being ‘bathed like a baby’. I won't ask for help in this area - ... That's just a 'flat out refusal i have !! Thankfully - at the moment - I can cope ...
I often have the feeling that i am ‘a burden to others, and I am unloved - yet mainly unlovable'
I did not want a relationship as it was easier to be alone because ‘no-one else should be burdened with this’. But - Since meeting the gorgeous man i am now with - Maybe this has changed - Time will tell ...
I would say lastly that I feel my brain tumour has had a negative impact on my friendships, Before my lovely fella came alone - I felt severely socially isolated. I have my mother take me out but really that's it -
Yes i have LOTS of people say - " we'll take you out " - ... " When can you be free " - but - at the end of the day - the day never comes - so - everyone thinks everyone else is there for me - yet - in fact - there is no-one !! But - I Understand that everyone has there own lives to lead -
I have found that many friends cannot cope with my new circumstances, especially if they knew me before the Tumour came along - these people tend to behave differently around me now, or they withdraw entirely.
Thankfully i have made new friends who are very understanding - and only knew me when i was ill - so this is a good thing - but - this also requires the mobility, energy, and the cognitive and communicative dexterity that a brain tumour impairs. It also does not help that sometimes i feel awkward in social situations - and yet - i don't know when this feeling will come along !!
This is as far as i am going today with this blog - i'm a tad worn out and for some time scale for you - it has taken me 12 hours and 33 minutes to write this piece !!
Is that a lot -? - I don't know - but all i do know is i have written it while zoned out in 'another dimension' !!!! Is THAT weird ?? - I don't know that either !! lol .... Now off to feed the Unicorns ! xx
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